The Official Patient's Sourcebook on Reflex Sympathetic Dystrophy Syndrome

THE OFFICIAL PATIENT’S SOURCEBOOK

on

REFLEX

SYMPATHETIC DYSTROPHY SYNDROME J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS

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ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2002 by ICON Group International, Inc. Copyright Ó2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1

Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher’s note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your physician. All matters regarding your health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before taking any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The Official Patient’s Sourcebook on Reflex Sympathetic Dystrophy Syndrome: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-83099-1 1. Reflex Sympathetic Dystrophy Syndrome-Popular works. I. Title.

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Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication.

Copyright Notice If a physician wishes to copy limited passages from this sourcebook for patient use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail: [email protected]). ICON Group often grants permission for very limited reproduction of our publications for internal use, press releases, and academic research. Such reproduction requires confirmed permission from ICON Group International Inc. The disclaimer above must accompany all reproductions, in whole or in part, of this sourcebook.

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Dedication To the healthcare professionals dedicating their time and efforts to the study of reflex sympathetic dystrophy syndrome.

Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to reflex sympathetic dystrophy syndrome. All of the Official Patient’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support.

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About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Patient’s Sourcebook series published by ICON Health Publications.

Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Patient’s Sourcebook series published by ICON Health Publications.

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About ICON Health Publications In addition to reflex sympathetic dystrophy syndrome, Official Patient’s Sourcebooks are available for the following related topics: ·

The Official Patient's Sourcebook on Amyotrophic Lateral Sclerosis

·

The Official Patient's Sourcebook on Brachial Plexus Injuries

·

The Official Patient's Sourcebook on Brown Sequard

·

The Official Patient's Sourcebook on Chronic Inflammatory Demyelinating Polyneuropathy

·

The Official Patient's Sourcebook on Orthostatic Hypotension

·

The Official Patient's Sourcebook on Paresthesia

·

The Official Patient's Sourcebook on Peripheral Neuropathy

·

The Official Patient's Sourcebook on Primary Lateral Sclerosis

·

The Official Patient's Sourcebook on Shy Drager

·

The Official Patient's Sourcebook on Spinal Cord Injury

·

The Official Patient's Sourcebook on Syringomyelia

·

The Official Patient's Sourcebook on Tethered Spinal Cord Syndrome

·

The Official Patient's Sourcebook on Thoracic Outlet Syndrome

·

The Official Patient's Sourcebook on Transverse Myelitis

·

The Official Patient's Sourcebook on Trigeminal Neuralgia

·

The Official Patient's Sourcebook on Whiplash

To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health

Contents vii

Table of Contents INTRODUCTION...................................................................................... 1

Overview............................................................................................................... 1 Organization......................................................................................................... 3 Scope ..................................................................................................................... 3 Moving Forward................................................................................................... 5

PART I: THE ESSENTIALS ................................................. 7 CHAPTER 1. THE ESSENTIALS ON REFLEX SYMPATHETIC DYSTROPHY SYNDROME: GUIDELINES ...................................................................... 9

Overview............................................................................................................... 9 What Is Reflex Sympathetic Dystrophy Syndrome?.......................................... 10 What Are the Symptoms of RSDS? ................................................................... 11 What Causes RSDS? .......................................................................................... 12 Who Gets It?....................................................................................................... 12 How Is RSDS Diagnosed? ................................................................................. 12 What Is the Prognosis?....................................................................................... 13 What Is the Treatment?...................................................................................... 13 Are There Any Other Disorders Like RSDS? .................................................... 14 What Research Is Being Done? .......................................................................... 14 Is Help Available?............................................................................................... 15 More Guideline Sources ..................................................................................... 16 Vocabulary Builder............................................................................................. 19

CHAPTER 2. SEEKING GUIDANCE ....................................................... 21

Overview............................................................................................................. 21 Associations and Reflex Sympathetic Dystrophy Syndrome ............................. 21 Finding More Associations................................................................................. 28 Finding Doctors.................................................................................................. 30 Finding a Neurologist......................................................................................... 31 Selecting Your Doctor ........................................................................................ 32 Working with Your Doctor ................................................................................ 32 Broader Health-Related Resources ..................................................................... 34 Vocabulary Builder............................................................................................. 34

CHAPTER 3. CLINICAL TRIALS AND REFLEX SYMPATHETIC DYSTROPHY SYNDROME ...................................................................... 35

Overview............................................................................................................. 35 Recent Trials on Reflex Sympathetic Dystrophy Syndrome .............................. 38 Benefits and Risks............................................................................................... 41 Keeping Current on Clinical Trials.................................................................... 44 General References.............................................................................................. 45 Vocabulary Builder............................................................................................. 46

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PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL.................................................. 47 CHAPTER 4. STUDIES ON REFLEX SYMPATHETIC DYSTROPHY SYNDROME........................................................................................... 49

Overview............................................................................................................. 49 The Combined Health Information Database ..................................................... 49 Federally-Funded Research on Reflex Sympathetic Dystrophy Syndrome........ 51 The National Library of Medicine: PubMed ...................................................... 51 Vocabulary Builder............................................................................................. 52

CHAPTER 5. BOOKS ON REFLEX SYMPATHETIC DYSTROPHY SYNDROME........................................................................................... 55

Overview............................................................................................................. 55 Book Summaries: Federal Agencies .................................................................... 55 Book Summaries: Online Booksellers ................................................................. 56 The National Library of Medicine Book Index ................................................... 57 Chapters on Reflex Sympathetic Dystrophy Syndrome ..................................... 60 General Home References ................................................................................... 62 Vocabulary Builder............................................................................................. 63

CHAPTER 6. MULTIMEDIA ON REFLEX SYMPATHETIC DYSTROPHY SYNDROME........................................................................................... 65

Overview............................................................................................................. 65 Bibliography: Multimedia on Reflex Sympathetic Dystrophy Syndrome.......... 65 Vocabulary Builder............................................................................................. 67

CHAPTER 7. PERIODICALS AND NEWS ON REFLEX SYMPATHETIC DYSTROPHY SYNDROME ...................................................................... 69

Overview............................................................................................................. 69 News Services & Press Releases ......................................................................... 69 Newsletters on Reflex Sympathetic Dystrophy Syndrome ................................ 71 Academic Periodicals covering Reflex Sympathetic Dystrophy Syndrome ....... 72

CHAPTER 8. PHYSICIAN GUIDELINES AND DATABASES ..................... 75

Overview............................................................................................................. 75 NIH Guidelines................................................................................................... 75 NIH Databases.................................................................................................... 76 Other Commercial Databases ............................................................................. 80 Specialized References......................................................................................... 80 Vocabulary Builder............................................................................................. 82

PART III. APPENDICES .................................................... 83 APPENDIX A. RESEARCHING YOUR MEDICATIONS............................ 85

Overview............................................................................................................. 85 Your Medications: The Basics ............................................................................ 86

Contents

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Learning More about Your Medications ............................................................ 88 Commercial Databases........................................................................................ 88 Contraindications and Interactions (Hidden Dangers) ..................................... 89 A Final Warning ................................................................................................ 91 General References.............................................................................................. 91 Vocabulary Builder............................................................................................. 92

APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ..................... 93

Overview............................................................................................................. 93 What Is CAM? ................................................................................................... 93 What Are the Domains of Alternative Medicine?.............................................. 94 Can Alternatives Affect My Treatment? ........................................................... 97 Finding CAM References on Reflex Sympathetic Dystrophy Syndrome .......... 98 Additional Web Resources................................................................................ 102 General References............................................................................................ 103

APPENDIX C. RESEARCHING NUTRITION ......................................... 105

Overview........................................................................................................... 105 Food and Nutrition: General Principles........................................................... 105 Finding Studies on Reflex Sympathetic Dystrophy Syndrome........................ 110 Federal Resources on Nutrition........................................................................ 112 Additional Web Resources................................................................................ 113 Vocabulary Builder........................................................................................... 113

APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 117

Overview........................................................................................................... 117 Preparation ....................................................................................................... 117 Finding a Local Medical Library ...................................................................... 118 Medical Libraries Open to the Public............................................................... 118

APPENDIX E. YOUR RIGHTS AND INSURANCE ................................. 125

Overview........................................................................................................... 125 Your Rights as a Patient................................................................................... 125 Patient Responsibilities .................................................................................... 129 Choosing an Insurance Plan............................................................................. 130 Medicare and Medicaid .................................................................................... 133 NORD’s Medication Assistance Programs ..................................................... 136 Additional Resources ........................................................................................ 136

APPENDIX F. MORE ON PAIN............................................................ 139

Overview........................................................................................................... 139 A Brief History of Pain..................................................................................... 139 The Two Faces of Pain: Acute and Chronic...................................................... 140 The A to Z of Pain ............................................................................................ 141 How Is Pain Diagnosed? .................................................................................. 147 How Is Pain Treated? ....................................................................................... 148 What Are the Roles of Age and Gender in Pain?............................................. 154 A Pain Primer: What Do We Know about Pain? ............................................ 155 What Is the Future of Pain Research?.............................................................. 159

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Contents

Hope for the Future........................................................................................... 162 Spine Basics: The Vertebrae, Discs, and Spinal Cord ...................................... 162 The Nervous Systems ....................................................................................... 163 Information Resources ...................................................................................... 167

ONLINE GLOSSARIES.................................................... 169 Online Dictionary Directories.......................................................................... 170

REFLEX SYMPATHETIC DYSTROPHY SYNDROME GLOSSARY ......................................................................... 171 General Dictionaries and Glossaries ................................................................ 184

INDEX................................................................................... 186

Introduction

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INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ: Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don’t know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3

Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2

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Reflex Sympathetic Dystrophy Syndrome

Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor’s offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. The Official Patient’s Sourcebook on Reflex Sympathetic Dystrophy Syndrome has been created for patients who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to reflex sympathetic dystrophy syndrome, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on reflex sympathetic dystrophy syndrome. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on reflex sympathetic dystrophy syndrome should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your best option. This sourcebook is no exception. Each patient is unique.

Introduction

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Deciding on appropriate options is always up to the patient in consultation with their physician and healthcare providers.

Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching reflex sympathetic dystrophy syndrome (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to reflex sympathetic dystrophy syndrome. It also gives you sources of information that can help you find a doctor in your local area specializing in treating reflex sympathetic dystrophy syndrome. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with reflex sympathetic dystrophy syndrome. Part II moves on to advanced research dedicated to reflex sympathetic dystrophy syndrome. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on reflex sympathetic dystrophy syndrome. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options. Part III provides appendices of useful background reading for all patients with reflex sympathetic dystrophy syndrome or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with reflex sympathetic dystrophy syndrome. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with reflex sympathetic dystrophy syndrome.

Scope While this sourcebook covers reflex sympathetic dystrophy syndrome, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that reflex

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Reflex Sympathetic Dystrophy Syndrome

sympathetic dystrophy syndrome is often considered a synonym or a condition closely related to the following: ·

Algodystrophy

·

Algoneurodystrophy

·

Causalgia

·

Causalgia Syndrome (major)

·

Complex Regional Pain Syndrome

·

Coronary-scapular Syndrome

·

Postinfarction Sclerodactylia

·

Posttraumatic Pain Syndrome

·

Reflex Neurovascular Dystrophy

·

Reflex Sympathetic Dystrophy Syndrome

·

Shoulder-hand Syndrome

·

Steinbrocker Syndrome

·

Sudeck's Atrophy

In addition to synonyms and related conditions, physicians may refer to reflex sympathetic dystrophy syndrome using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world’s illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for reflex sympathetic dystrophy syndrome:4 ·

337.20 dystrophy sympathetic (post-traumatic) (reflex)

·

337.9 shoulder-hand syndrome

For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to reflex sympathetic dystrophy syndrome. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.

4 This list is based on the official version of the World Health Organization’s 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized. Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.”

Introduction

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Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by patients or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? All too often, patients diagnosed with reflex sympathetic dystrophy syndrome will log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. These patients are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with reflex sympathetic dystrophy syndrome is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of reflex sympathetic dystrophy syndrome, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find peer groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you the most options available in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your treatment plan. The Editors

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PART I: THE ESSENTIALS

ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on reflex sympathetic dystrophy syndrome. The essentials of a disease typically include the definition or description of the disease, a discussion of who it affects, the signs or symptoms associated with the disease, tests or diagnostic procedures that might be specific to the disease, and treatments for the disease. Your doctor or healthcare provider may have already explained the essentials of reflex sympathetic dystrophy syndrome to you or even given you a pamphlet or brochure describing reflex sympathetic dystrophy syndrome. Now you are searching for more in-depth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what your doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding.

Guidelines

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CHAPTER 1. THE ESSENTIALS ON REFLEX SYMPATHETIC DYSTROPHY SYNDROME: GUIDELINES Overview Official agencies, as well as federally-funded institutions supported by national grants, frequently publish a variety of guidelines on reflex sympathetic dystrophy syndrome. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the patient in mind. Since new guidelines on reflex sympathetic dystrophy syndrome can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internet-based services that post them.

The National Institutes of Health (NIH)5 The National Institutes of Health (NIH) is the first place to search for relatively current patient guidelines and fact sheets on reflex sympathetic dystrophy syndrome. Originally founded in 1887, the NIH is one of the world’s foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world’s most illustrious scientists and

5

Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html.

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physicians. Among them are 97 scientists who have won the Nobel Prize for achievement in medicine. There is no guarantee that any one Institute will have a guideline on a specific disease, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare diseases. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with reflex sympathetic dystrophy syndrome and associated conditions: ·

Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm

·

National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html

·

National Institute of Neurological Disorders and Stroke (NINDS); http://www.ninds.nih.gov/health_and_medical/disorder_index.htm

Among the above, the National Institute of Neurological Disorders and Stroke (NINDS) is particularly noteworthy. The mission of the NINDS is to reduce the burden of neurological disease—a burden borne by every age group, by every segment of society, by people all over the world.6 To support this mission, the NINDS conducts, fosters, coordinates, and guides research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke, and supports basic research in related scientific areas. The following patient guideline was recently published by the NINDS on reflex sympathetic dystrophy syndrome.

What Is Reflex Sympathetic Dystrophy Syndrome?7 Reflex sympathetic dystrophy syndrome (RSDS) — also known as complex regional pain syndrome — is a chronic condition characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch. The syndrome, which is a 6 This paragraph has been adapted from the NINDS: http://www.ninds.nih.gov/about_ninds/mission.htm. “Adapted” signifies that a passage has been reproduced exactly or slightly edited for this book. 7 Adapted from The National Institute of Neurological Disorders and Stroke (NINDS): http://www.ninds.nih.gov/health_and_medical/pubs/rsds_fact_sheet.htm.

Guidelines 11

variant of a condition known as causalgia, is a nerve disorder that occurs at the site of an injury (most often to the arms or legs). It occurs especially after injuries from high-velocity impacts such as those from bullets or shrapnel. However, it may occur without apparent injury. Causalgia was first documented in the 19th century by physicians concerned about pain Civil War veterans continued to experience after their wounds had healed. Doctors often called it “hot pain,” after its primary symptom. Over the years, the syndrome was classified as one of the peripheral neuropathies, and later, as a chronic pain syndrome. RSDS is currently classified as a variant of causalgia, not necessarily caused by trauma.

What Are the Symptoms of RSDS? The symptoms of RSDS usually occur near the site of an injury, either major or minor, and include: burning pain, muscle spasms, local swelling, increased sweating, softening of bones, joint tenderness or stiffness, restricted or painful movement, and changes in the nails and skin. One visible sign of RSDS near the site of injury is warm, shiny red skin that later becomes cool and bluish. The pain that patients report is out of proportion to the severity of the injury and gets worse, rather than better, over time. It is frequently characterized as a burning, aching, searing pain, which may initially be localized to the site of injury or the area covered by an injured nerve but spreads over time, often involving an entire limb. It can sometimes even involve the opposite extremity. Pain is continuous and may be heightened by emotional stress. Moving or touching the limb is often intolerable. Eventually the joints become stiff from disuse, and the skin, muscles, and bone atrophy. The symptoms of RSDS vary in severity and duration. However, there are usually three stages associated with RSDS, and each stage is marked by progressive changes in the skin, nails, muscles, joints, ligaments, and bones. Stage one lasts from 1 to 3 months and is characterized by severe, burning pain at the site of the injury. Muscle spasm, joint stiffness, restricted mobility, rapid hair and nail growth, and vasospasm (a constriction of the blood vessels) that affects color and temperature of the skin can also occur. In stage two, which lasts from 3 to 6 months, the pain intensifies. Swelling spreads, hair growth diminishes, nails become cracked, brittle, grooved, and

12 Reflex Sympathetic Dystrophy Syndrome

spotty, osteoporosis becomes severe and diffuse, joints thicken, and muscles atrophy. As the patient reaches stage three, changes in the skin and bones become irreversible, and pain becomes unyielding and may now involve the entire limb. There is marked muscle atrophy, severely limited mobility of the affected area, and flexor tendon contractions (contractions of the muscles and tendons that flex the joints). Occasionally the limb is displaced from its normal position, and marked bone softening is more dispersed.

What Causes RSDS? The cause of RSDS is unknown. The syndrome is thought to be the result of damaged nerves of the sympathetic nervous system — the part of the nervous system responsible for controlling the diameter of blood vessels. These damaged nerves send inappropriate signals to the brain, interfering with normal information about sensations, temperature, and blood flow. Since RSDS is most often caused by trauma to the extremities, other conditions that can bring about RSDS include sprains, fractures, surgery, damage to blood vessels or nerves, and cerebral lesions. The disorder is unique in that it simultaneously affects the nerves, skin, muscles, blood vessels, and bones.

Who Gets It? RSDS can strike at any age, but is more common between the ages of 40 and 60. It affects both men and women, but is most frequently seen in women. Although it can occur at any age, the number of RSDS cases among adolescents and young adults is increasing. Investigators estimate that two to five percent of those with peripheral nerve injury and 12 to 21 percent of those with hemiplegia (paralysis of one side of the body) will suffer from RSDS.

How Is RSDS Diagnosed? RSDS is often misdiagnosed because it remains poorly understood. Diagnosis is complicated by the fact that some patients improve without treatment. A delay in diagnosis and/or treatment for this syndrome can

Guidelines 13

result in severe physical and psychological problems. Early recognition and prompt treatment provide the greatest opportunity for recovery. RSDS is diagnosed primarily through observation of the symptoms. However, some physicians use thermography — a diagnostic technique for measuring blood flow by determining the variations in heat emitted from the body — to detect changes in body temperature that are common in RSDS. A color-coded “thermogram” of a person in pain often shows an altered blood supply to the painful area, appearing as a different shade (abnormally pale or violet) than the surrounding areas of the corresponding part on the other side of the body. An abnormal thermogram in a patient who complains of pain may lead to a diagnosis of RSDS. X-rays may also show changes in the bone.

What Is the Prognosis? Good progress can be made in treating RSDS if treatment is begun early, ideally within 3 months of the first symptoms. Early treatment often results in remission. If treatment is delayed, however, the disorder can quickly spread to the entire limb and changes in bone and muscle may become irreversible. In 50 percent of RSDS cases, pain persists longer than 6 months and sometimes for years.

What Is the Treatment? Physicians use a variety of drugs to treat RSDS, including corticosteroids, vasodilators, and alpha- or beta-adrenergic-blocking compounds. Elevation of the extremity and physical therapy are also used to treat RSDS. Injection of a local anesthetic, such as lidocaine, is usually the first step in treatment. Injections are repeated as needed. TENS (transcutaneous electrical stimulation), a procedure in which brief pulses of electricity are applied to nerve endings under the skin, has helped some patients in relieving chronic pain. In some cases, surgical or chemical sympathectomy — interruption of the affected portion of the sympathetic nervous system — is necessary to relieve pain. Surgical sympathectomy involves cutting the nerve or nerves, destroying the pain almost instantly. But surgery may also destroy other sensations as well.

14 Reflex Sympathetic Dystrophy Syndrome

Are There Any Other Disorders Like RSDS? RSDS has many of the same features as causalgia, such as severe burning pain that is aggravated by physical or emotional stimuli. However, causalgia usually affects the lower limbs, the palm of the hand or the sole of the foot; RSDS may strike any part of the body. RSDS also has characteristics similar to those of other disorders, such as shoulder-hand syndrome, which sometimes occurs after a heart attack and is marked by pain and stiffness in the arm and shoulder; Sudeck’s syndrome, which is prevalent in older people and in women and is characterized by bone changes and muscular atrophy, but is not always associated with trauma; and Steinbrocker’s syndrome, which affects both sexes but is slightly more prevalent in females, and includes such symptoms as gradual stiffness, discomfort, and weakness in the shoulder and hand.

What Research Is Being Done? The National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH), supports and conducts research on the brain and central nervous system, including research relevant to RSDS, through grants to major medical institutions across the country. NINDS-supported scientists are working to develop effective treatments for neurological conditions and, ultimately, to find ways of preventing them. Investigators are studying new approaches to treat RSDS and intervene more aggressively after traumatic injury to lower the patient’s chances of developing the disorder. In addition, NINDS-supported scientists are studying how signals of the sympathetic nervous system cause pain in RSDS patients. Using a technique called microneurography, these investigators are able to record and measure neural activity in single nerve fibers of affected patients. By testing various hypotheses, these researchers hope to discover the unique mechanism that causes the spontaneous pain of RSDS and that discovery may lead to new ways of blocking pain. Other studies to overcome chronic pain syndromes are discussed in the pamphlet “Chronic Pain: Hope Through Research,” published by the NINDS.

Guidelines 15

Is Help Available? The unrelenting pain from RSDS has caused many patients much physical and emotional misery. Family, friends, coworkers, and, regrettably, physicians themselves, may regard the patient as a complainer, thereby increasing the patient’s distress. To meet the needs of individuals with RSDS and other conditions causing chronic pain, the following voluntary health agencies promote research, provide information, and may offer advice on coping. For information, write or call: RSDS Association 116 Haddon Avenue Suite D Haddonfield, New Jersey 08033 (856) 795-8845 www.rsds.org American Chronic Pain Association P.O. Box 850 Rocklin, California 95677 (916) 632-0922 www.theacpa.org National Chronic Pain Outreach Association, Inc. P.O. Box 274 Millboro, Virginia 24460 (540) 862-9437 RSDHope / Maine RSDS Patient Advocacy Group P.O. Box 875 Harrison, ME 04040-0875 207-583-4589 www.rsdhope.org For information on other neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute’s Brain Resources and Information Network (BRAIN) at: BRAIN P.O. Box 5801

16 Reflex Sympathetic Dystrophy Syndrome

Bethesda, Maryland 20824 800-352-9424

More Guideline Sources The guideline above on reflex sympathetic dystrophy syndrome is only one example of the kind of material that you can find online and free of charge. The remainder of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to reflex sympathetic dystrophy syndrome. Many of the guidelines listed below address topics that may be of particular relevance to your specific situation or of special interest to only some patients with reflex sympathetic dystrophy syndrome. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly.

Topic Pages: MEDLINEplus For patients wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and patientoriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly patient-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search.

The Combined Health Information Database (CHID) CHID Online is a reference tool that maintains a database directory of thousands of journal articles and patient education guidelines on reflex sympathetic dystrophy syndrome and related conditions. One of the

Guidelines 17

advantages of CHID over other sources is that it offers summaries that describe the guidelines available, including contact information and pricing. CHID’s general Web site is http://chid.nih.gov/. To search this database, go to http://chid.nih.gov/detail/detail.html. In particular, you can use the advanced search options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive: ·

Reflex Sympathetic Dystrophy Syndrome (RSDS) Source: Haddonfield, NJ: Reflex Sympathetic Dystrophy Syndrome Association of America. 199x. 18 p. Contact: Available from Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA). 116 Haddon Avenue, Suite D, Haddonfield, NJ 08033-2306. (609) 795-8845. Website: rsds.org. Price: Single copy free. Summary: This booklet provides people who have reflex sympathetic dystrophy syndrome (RSDS) with information on this disabling multisymptom syndrome that usually affects one or more extremities. RSDS is characterized by pain and simultaneous involvement of nerves, skin, muscles, blood vessels, and bones. The booklet presents the clinical features and symptoms of RSDS, outlines the features of its three stages, identifies precipitating factors associated with it, highlights past and present hypotheses regarding its pathogenesis, and provides information on diagnosis and treatment. Therapies include drugs, blocks, physical therapy, transcutaneous electrical nerve stimulation, sympathectomy, and implantable devices. The booklet concludes with a list of the problems and effects of RSDS, and a glossary of medical terms, facts about RSDS, and information on the RSDS Association of America are included as well. 27 references.

·

Reflex Sympathetic Dystrophy Syndrome (RSDS): Help Us Stop the Pain Source: Haddonfield, NJ: Reflex Sympathetic Dystrophy Association of America. 16 p. Contact: Available from Reflex Sympathetic Dystrophy Association of America. P.O. Box 821, Haddonfield, NJ 08033. (609) 795-8845. Price: Free. Summary: This brochure offers information about Reflex Sympathetic Dystrophy Syndrome (RSDS) in an outline format. Topics covered include signs and symptoms, stages, incidence, etiology, diagnosis, and treatment. A glossary of medical terms and 'facts and fiction about RSDS' are also included. 27 references.

18 Reflex Sympathetic Dystrophy Syndrome

·

RSDS: The Pain that Doesn't Stop Source: Haddonfield, NJ: Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). 6 p. Contact: Available from Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). P.O. Box 821, Haddonfield, NJ 08033. (609) 7958845. Price: Free. Summary: This brochure briefly discusses the symptoms of reflex sympathetic dystrophy syndrome, a disease with involvement of nerves, skin, muscles, blood vessels, and bones. The most common symptom is constant pain.

The National Guideline Clearinghouse™ The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search their site located at http://www.guideline.gov by using the keyword “reflex sympathetic dystrophy syndrome” or synonyms. The following was recently posted: ·

Complex regional pain syndrome (CRPS). Source: Washington State Medical Association/Washington State Department of Labor and Industries/Washington State Physical Therapy Association/Washington State Occupational Therapy Association.; 1999; 9 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1131&sSearch_string=Reflex+Sympathetic+Dystrophy+Syndrome

The NIH Search Utility After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to reflex sympathetic dystrophy syndrome. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and patients. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches.

Guidelines 19

To use the NIH search utility, http://search.nih.gov/index.html.

visit

the

following

Web

page:

Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: ·

AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats

·

drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html

·

Family Village: http://www.familyvillage.wisc.edu/specific.htm

·

Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/

·

Med Help International: http://www.medhelp.org/HealthTopics/A.html

·

Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/

·

Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/

·

WebMDÒHealth: http://my.webmd.com/health_topics

Vocabulary Builder The material in this chapter may have contained a number of unfamiliar words. The following Vocabulary Builder introduces you to terms used in this chapter that have not been covered in the previous chapter: Adrenergic: Activated by, characteristic of, or secreting epinephrine or substances with similar activity; the term is applied to those nerve fibres that liberate norepinephrine at a synapse when a nerve impulse passes, i.e., the sympathetic fibres. [EU] Atrophy: A wasting away; a diminution in the size of a cell, tissue, organ, or part. [EU] Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Chronic: Persisting over a long period of time. [EU] Constriction: The act of constricting. [NIH] Dystrophy: Any disorder arising from defective or faulty nutrition, especially the muscular dystrophies. [EU]

20 Reflex Sympathetic Dystrophy Syndrome

Extremity: A limb; an arm or leg (membrum); sometimes applied specifically to a hand or foot. [EU] Hemiplegia: Paralysis of one side of the body. [EU] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Lidocaine: A local anesthetic and cardiac depressant used as an antiarrhythmia agent. Its actions are more intense and its effects more prolonged than those of procaine but its duration of action is shorter than that of bupivacaine or prilocaine. [NIH] Ligament: A band of fibrous tissue that connects bones or cartilages, serving to support and strengthen joints. [EU] Mobility: Capability of movement, of being moved, or of flowing freely. [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Osteoporosis: Reduction in the amount of bone mass, leading to fractures after minimal trauma. [EU] Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Pulse: The rhythmical expansion and contraction of an artery produced by waves of pressure caused by the ejection of blood from the left ventricle of the heart as it contracts. [NIH] Reflex: 1; reflected. 2. a reflected action or movement; the sum total of any particular involuntary activity. [EU] Remission: A diminution or abatement of the symptoms of a disease; also the period during which such diminution occurs. [EU] Sympathectomy: The removal or interruption of some part of the sympathetic nervous system for therapeutic or research purposes. [NIH] Thermography: Measurement of the regional temperature of the body or an organ by infrared sensing devices, based on self-emanating infrared radiation. [NIH] Transcutaneous: Transdermal. [EU]

Seeking Guidance 21

CHAPTER 2. SEEKING GUIDANCE Overview Some patients are comforted by the knowledge that a number of organizations dedicate their resources to helping people with reflex sympathetic dystrophy syndrome. These associations can become invaluable sources of information and advice. Many associations offer aftercare support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.8 In addition to support groups, your physician can be a valuable source of guidance and support. Therefore, finding a physician that can work with your unique situation is a very important aspect of your care. In this chapter, we direct you to resources that can help you find patient organizations and medical specialists. We begin by describing how to find associations and peer groups that can help you better understand and cope with reflex sympathetic dystrophy syndrome. The chapter ends with a discussion on how to find a doctor that is right for you.

Associations and Reflex Sympathetic Dystrophy Syndrome As mentioned by the Agency for Healthcare Research and Quality, sometimes the emotional side of an illness can be as taxing as the physical side.9 You may have fears or feel overwhelmed by your situation. Everyone has different ways of dealing with disease or physical injury. Your attitude, your expectations, and how well you cope with your condition can all Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need. 9 This section has been adapted from http://www.ahcpr.gov/consumer/diaginf5.htm. 8

22 Reflex Sympathetic Dystrophy Syndrome

influence your well-being. This is true for both minor conditions and serious illnesses. For example, a study on female breast cancer survivors revealed that women who participated in support groups lived longer and experienced better quality of life when compared with women who did not participate. In the support group, women learned coping skills and had the opportunity to share their feelings with other women in the same situation. In addition to associations or groups that your doctor might recommend, we suggest that you consider the following list (if there is a fee for an association, you may want to check with your insurance provider to find out if the cost will be covered): ·

American Chronic Pain Association Address: American Chronic Pain Association P.O. Box 850, Rocklin, CA 95677 Telephone: (916) 632-0922 Fax: (916) 632-3208 Email: [email protected] Web Site: http://www.theacpa.org Background: The American Chronic Pain Association is a nonprofit selfhelp organization that provides assistance and hope to individuals with chronic pain. Established in 1980, the American Chronic Pain Association operates support groups throughout the United States and offers its members positive and constructive methods for dealing with chronic pain. Groups usually consist of approximately 10 members who learn useful techniques for pain management through discussion, mutual support, and informational exchanges. Educational materials produced by the American Chronic Pain Association include 'Help and Hope' pamphlets and brochures, guidelines for the selection of a pain unit, the 'American Chronic Pain Association Member Workbook,' tapes, and the 'American Chronic Pain Association Chronicle.'. Relevant area(s) of interest: Reflex Sympathetic Dystrophy Syndrome

·

American Pain Society Address: American Pain Society 4700 West Lake Avenue, Glenview, IL 60025-1485 Telephone: (847) 375-4715 Toll-free: (800) 616-7246 Fax: (847) 375-4777 Email: [email protected] Web Site: http://www.ampainsoc.org

Seeking Guidance 23

Background: The American Pain Society (APS) is a not-for-profit organization dedicated to serving people in pain by advancing research, education, treatment, and professional practice. Established in 1978, APS recognizes that its goals can best be accomplished by a joint and interactive effort among basic scientists and health care professionals. APS consists of 3,200 members and six chapters in the United States. Educational materials include a quarterly journal called 'Pain Forum,' a pamphlet entitled 'American Pain Society,' and a directory entitled 'Pain Facilities Directory.' The Society also conducts an annual Scientific Meeting. APS maintains a web site at http://www.ampainsoc.org. Relevant area(s) of interest: Reflex Sympathetic Dystrophy Syndrome, Trigeminal Neuralgia ·

Back Pain Association of America, Inc Address: Back Pain Association of America, Inc. P.O. Box 135, Pasadena, MD 21123-0135 Telephone: (410) 255-3633 Fax: (410) 255- 7338 Email: [email protected] Background: The Back Pain Association of America, Inc. (BPAA) is a national nonprofit organization dedicated to providing information and support to people who are affected by back and neck pain, their family members, friends, and health care professionals. Established in 1991 and consisting of nearly 4,000 members, BPAA offers programs and information to help affected individuals learn more about their spinal disorders and ways to cope with them. The organization also has a program to help individuals prevent back injuries. BPAA publishes a self-titled quarterly newsletter that helps readers stay informed of updated information and new forms of treatment. The organization's 'Friends Across America' networking program enables affected individuals to exchange information and support via telephone. BPAA also has a physician referral service as well as an information service for physicians who treat back and neck pain. In addition, the Association also promotes research and offers a variety of fact sheets including 'The Relationship Between Nerve Damage and Leg Pain,' 'Urinary Problems and Diseases of the Spine,' 'Arachnoiditis, Questions and Answers,' and 'A Guide to Abdominal and Stretching Exercises.'. Relevant area(s) of interest: Reflex Sympathetic Dystrophy Syndrome, Spinal Cord Injury, Syringomyelia, Whiplash

24 Reflex Sympathetic Dystrophy Syndrome

·

Canadian Reflex Sympathetic Dystrophy Network Address: Canadian Reflex Sympathetic Dystrophy Network 107-60 Anderton Avenue, Courtenay, British Columbia, V9N 2G8, Canada Telephone: (250) 338-5835 Toll-free: (800) 616-7246 Fax: (250) 338-5835 Email: [email protected] Web Site: http://mars.ark.com/~mcmartin/ Background: The Canadian Reflex Sympathetic Dystrophy (CRSD) Network is a nonprofit support organization dedicated to offering support and information to individuals affected by reflex sympathetic dystrophy syndrome (RSDS) and those who care for them. Reflex sympathetic dystrophy syndrome is a rare disorder of the sympathetic nervous system characterized by chronic, severe pain. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary, bodily functions such as heart rate, blood vessel constriction, and blood pressure changes. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with reflex sympathetic dystrophy syndrome. CRSD Network's mission is to provide information about RSDS and enhance public awareness of RSDS; offer support to individuals and families living with RSDS, including pain and stress management; engage in programs of public advocacy; and provide referrals to health care professionals who have expertise in treating RSDS. The Network answers inquiries from all over the world. Available information includes an extensive library of reprints of medical articles, brochures, and a newsletter. CRSD Network is also actively engaged in establishing support groups throughout Canada. The Network maintains a site on the World Wide Web at http://mars.ark.com/~mcmartin. Relevant area(s) of interest: Algodystrophy, Algoneurodystrophy, Causalgia Syndrome (Major), Complex Regional Pain Syndrome, Reflex Neurovascular Dystrophy, Reflex Sympathetic Dystrophy Syndrome, Sudeck's Atrophy

·

New England Reflex Sympathetic Dystrophy Coalition, Inc Address: New England Reflex Sympathetic Dystrophy Coalition, Inc. 295 Clark Street, Suite 303, Worcester, MA 01606 Telephone: (508) 852-0525 Fax: (508) 793-7800 Email: [email protected]

Seeking Guidance 25

Web Site: http://www.RSDcoalition.com Background: The New England Reflex Sympathetic Dystrophy Coalition is a voluntary organization that is dedicated to providing medical, social, and therapeutic information on reflex sympathetic dystrophy (RSD). RSD is a condition that is thought to result from abnormal or excessive responses of the sympathetic nervous system, the part of the autonomic nervous system that regulates involuntary functions such as constricting blood vessels and increasing blood pressure. Individuals with RSD may experience burning pain in the upper and lower extremities or other areas of the body. Affected areas may also perspire excessively and become swollen, inflamed, and abnormally sensitive to the touch and to hot or cold temperatures. The New England Reflex Sympathetic Dystrophy Coalition was established in 1997 and currently consists of approximately 100 members. The Coalition is committed to promoting unity and cohesiveness among local, state, national, and international RSD organizations; promoting research toward a cure for reflex sympathetic dystrophy; and increasing professional and public awareness of the condition. The Coalition works to fulfill its mission and goals by engaging in advocacy and lobbying efforts, offering workshops and seminars, and promoting funding for fellowship grants. In addition, the Coalition offers support group assistance, provides physician referrals, and publishes a quarterly newsletter. The New England Reflex Sympathetic Dystrophy Coalition also has a web site on the Internet that discusses the organization's mission, goals, and services; provides understandable information on RSD; offers updates on seminars and workshops; and provides a directory of links to additional sources of information and support. Relevant area(s) of interest: Causalgia, Reflex Sympathetic Dystrophy Syndrome ·

North American Chronic Pain Association of Canada Address: North American Chronic Pain Association of Canada 150 Central Park Drive, Unit 105, Brampton, Ontario, L6T 2T9, Canada Telephone: 905 793-5230 Toll-free: (800) 616-7246 Fax: (905) 793-8781 Email: [email protected] Web Site: http://www3.sympatico.ca/nacpac Background: The North American Chronic Pain Association of Canada (NACPAC) is a nonprofit self-help organization dedicated to providing assistance and hope to individuals with chronic pain. NACPAC defines

26 Reflex Sympathetic Dystrophy Syndrome

chronic pain as any frequent or continuous pain that has lasted more than a few months. This includes, but is not limited to, lower back pain, fibromyalgia, arthritis, headaches and migraines, and neck and shoulder pain. NACPAC was established in 1986 and currently consists of approximately 1,000 members. NACPAC brings together affected individuals through mutual support groups operating throughout Canada. Where no group exists, NACPAC provides materials and guidance on how to establish a support group. Members are encouraged by their peers to share ways of coping with chronic pain and to live full, productive lives. Group leaders are individuals who have themselves learned to function well despite their pain. NACPAC also empowers people to make informed choices; supports education and research in the field of chronic pain; and networks with organizations of similar purpose. The Association provides education about pain related problems through a series of brochures, pamphlets, and a quarterly newsletter entitled 'NACPAC Track.' In addition, speakers, videotapes, and books are available to assist members to learn about their pain problems in layperson's language. NACPAC also provides referrals to other organizations and maintains a web site at http://www3.sympatico.ca/nacpac. Relevant area(s) of interest: Reflex Sympathetic Dystrophy Syndrome ·

Reflex Sympathetic Dystrophy Network Address: Reflex Sympathetic Dystrophy Network Web Site on the Internet, Telephone: (847) 375-4715 Toll-free: (800) 616-7246 Email: [email protected] Web Site: http://www.rsdnet.org Background: The Reflex Sympathetic Dystrophy Network is a web site on the Internet dedicated to providing information, support, resources, and online networking opportunities to individuals with Reflex Sympathetic Dystrophy (RSD). RSD is a rare disorder or group of disorders of the sympathetic nervous system characterized by chronic, severe pain and related sensory abnormalities, abnormal blood flow, sweating, and other symptoms following bone fracture, muscle sprain, or injury to blood vessels or nerves. The RSD Network site provides information concerning current research on RSD; a Frequently Asked Questions (FAQ) and answers area that provides understandable information on the disorder; and current medical journal references and abstracts on RSD. The site also offers a listing of suggested readings on the disorder; dynamic linkage to additional sources of information on the Internet; and

Seeking Guidance 27

the 'RSDNet-L,' an online discussion list (ListServ) for people with RSD, individuals who care about someone with the disorder, and health care professionals who treat those with RSD. The ListServ also offers current subscribers archives of past mailing list correspondence. (Those interested in joining the online discussion list may locate simple instructions within the RSD Network's web site.). Relevant area(s) of interest: Causalgia, Reflex Neurovascular Dystrophy, Reflex Sympathetic Dystrophy Syndrome ·

Reflex Sympathetic Dystrophy Syndrome Association of America Address: Reflex Sympathetic Dystrophy Syndrome Association of America 116 Haddon Avenue, Suite D, Haddonfield, NJ 08033 Telephone: (609) 795-8845 Fax: (609) 795-8845 Email: [email protected] Web Site: http://www.rsds.org Background: The Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA) is a not-for-profit organization founded to promote and support research into the causes and cure of Reflex Sympathetic Dystrophy Syndrome (RSDS). The Association's mission also includes the establishment of a national data bank for coordination of research and treatment information; establishment and organization of support groups for affected individuals and their families; and promotion of awareness of Reflex Sympathetic Dystrophy Syndrome among health care professionals and the general public. Founded in 1984, the Association provides a referral service to physicians, offers a pen pal service, and promotes patient advocacy. The Reflex Sympathetic Dystrophy Syndrome Association offers a variety of educational materials and services including an information packet, a quarterly newsletter, a statistical report on Reflex Sympathetic Dystrophy Syndrome derived from member questionnaires, reference articles, brochures, booklets, and videos. The Association also provides several special services to health care professionals, including an annual professional membership directory, an annual digest of current articles on Reflex Sympathetic Dystrophy Syndrome, and educational in-service conferences. Relevant area(s) of interest: Causalgia, Reflex Neurovascular Dystrophy, Reflex Sympathetic Dystrophy Syndrome

·

RSDHope Group Address: RSDHope Group P.O. Box 875, Harrison, ME 04040- 0875

28 Reflex Sympathetic Dystrophy Syndrome

Telephone: (207) 583-4589 Email: [email protected] Web Site: http://www.rsdhope.org Background: The RSDHope Group is a national not-for-profit organization dedicated to increasing awareness of Reflex Sympathetic Dystrophy Syndrome (RSDS) among affected individuals, their family members, health professionals, and the general public. RSDS is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain following a simple trauma, break or fracture, sharp force injury, or surgery. The sympathetic nervous system is that part of the autonomic nervous system which regulates involuntary, bodily functions such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with Reflex Sympathetic Dystrophy Syndrome. The symptoms of RSDS typically begin with burning pain, especially in an arm, finger(s), palm of the hand(s), and/or shoulder(s). In some individuals, RSDS may occur in one or both legs or it may be localized to one knee or hip. Established in 1995, the RSDHope Group consists of 750 members. The organization produces educational materials including a quarterly newsletter, seminars, videotapes, information packets, and computer and postal pen pals. RSDHope Group can be reached at its email address rsdhopeatmail.org or roomblueatmegalink.net or on the world wide web at http://www.rsdhope.org. Relevant area(s) of interest: Reflex Sympathetic Dystrophy Syndrome

Finding More Associations There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information than what is listed above, by consulting all of them, you will have nearly exhausted all sources for patient associations.

The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about reflex sympathetic dystrophy syndrome. For more information, see the NHIC’s

Seeking Guidance 29

Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797.

DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov/. Simply type in “reflex sympathetic dystrophy syndrome” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations.

The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “reflex sympathetic dystrophy syndrome”. Type the following hyperlink into your Web browser: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making these selections and typing in “reflex sympathetic dystrophy syndrome” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with reflex sympathetic dystrophy syndrome. You should check back periodically with this database since it is updated every 3 months. The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific diseases. You can access this database at the following Web site: http://www.rarediseases.org/cgi-bin/nord/searchpage. Select the option called “Organizational Database (ODB)” and type “reflex sympathetic dystrophy syndrome” (or a synonym) in the search box.

30 Reflex Sympathetic Dystrophy Syndrome

Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site: http://boards.webmd.com/roundtable. These online self-help communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective.

Finding Doctors One of the most important aspects of your treatment will be the relationship between you and your doctor or specialist. All patients with reflex sympathetic dystrophy syndrome must go through the process of selecting a physician. While this process will vary from person to person, the Agency for Healthcare Research and Quality makes a number of suggestions, including the following:10 ·

If you are in a managed care plan, check the plan’s list of doctors first.

·

Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.

·

Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide.

·

Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide.

Additional steps you can take to locate doctors include the following: ·

Check with the associations listed earlier in this chapter.

·

Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors.

10

This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.

Seeking Guidance 31

·

The American Board of Medical Specialties can tell you if your doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at 11 http://www.abms.org/newsearch.asp. You can also contact the ABMS by phone at 1-866-ASK-ABMS.

·

You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many licensed doctors in the United States. This information also can be found in “Physician Select” at the AMA’s Web site: http://www.amaassn.org/aps/amahg.htm.

Finding a Neurologist The American Academy of Neurology allows you to search for member neurologists by name or location. To use this service, go to http://www.aan.com/, select “Find a Neurologist” from the toolbar. Enter your search criteria, and click “Search.” To find out more information on a particular neurologist, click on the physician’s name. If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.

While board certification is a good measure of a doctor’s knowledge, it is possible to receive quality care from doctors who are not board certified. 11

32 Reflex Sympathetic Dystrophy Syndrome

Selecting Your Doctor12 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your health insurance plan and if he or she is taking new patients. If the doctor is not covered by your plan, ask yourself if you are prepared to pay the extra costs. The next step is to schedule a visit with your chosen physician. During the first visit you will have the opportunity to evaluate your doctor and to find out if you feel comfortable with him or her. Ask yourself, did the doctor: ·

Give me a chance to ask questions about reflex sympathetic dystrophy syndrome?

·

Really listen to my questions?

·

Answer in terms I understood?

·

Show respect for me?

·

Ask me questions?

·

Make me feel comfortable?

·

Address the health problem(s) I came with?

·

Ask me my preferences about different kinds of treatments for reflex sympathetic dystrophy syndrome?

·

Spend enough time with me?

Trust your instincts when deciding if the doctor is right for you. But remember, it might take time for the relationship to develop. It takes more than one visit for you and your doctor to get to know each other.

Working with Your Doctor13 Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care and have better results. Here are some tips to help you and your doctor become partners: ·

You know important things about your symptoms and your health history. Tell your doctor what you think he or she needs to know.

12 This

section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. 13 This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.

Seeking Guidance 33

·

It is important to tell your doctor personal information, even if it makes you feel embarrassed or uncomfortable.

·

Bring a “health history” list with you (and keep it up to date).

·

Always bring any medications you are currently taking with you to the appointment, or you can bring a list of your medications including dosage and frequency information. Talk about any allergies or reactions you have had to your medications.

·

Tell your doctor about any natural or alternative medicines you are taking.

·

Bring other medical information, such as x-ray films, test results, and medical records.

·

Ask questions. If you don’t, your doctor will assume that you understood everything that was said.

·

Write down your questions before your visit. List the most important ones first to make sure that they are addressed.

·

Consider bringing a friend with you to the appointment to help you ask questions. This person can also help you understand and/or remember the answers.

·

Ask your doctor to draw pictures if you think that this would help you understand.

·

Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first.

·

Let your doctor know if you need more time. If there is not time that day, perhaps you can speak to a nurse or physician assistant on staff or schedule a telephone appointment.

·

Take information home. Ask for written instructions. Your doctor may also have brochures and audio and videotapes that can help you.

·

After leaving the doctor’s office, take responsibility for your care. If you have questions, call. If your symptoms get worse or if you have problems with your medication, call. If you had tests and do not hear from your doctor, call for your test results. If your doctor recommended that you have certain tests, schedule an appointment to get them done. If your doctor said you should see an additional specialist, make an appointment.

By following these steps, you will enhance the relationship you will have with your physician.

34 Reflex Sympathetic Dystrophy Syndrome

Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help patients find healthcare professionals. These include:14 ·

Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html

·

Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html

·

Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html

Vocabulary Builder The following vocabulary builder provides definitions of words used in this chapter that have not been defined in previous chapters: Abdominal: Pertaining to the abdomen. [EU] Autonomic: Self-controlling; functionally independent. [EU] Neuralgia: Paroxysmal pain which extends along the course of one or more nerves. Many varieties of neuralgia are distinguished according to the part affected or to the cause, as brachial, facial, occipital, supraorbital, etc., or anaemic, diabetic, gouty, malarial, syphilitic, etc. [EU] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH]

You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.

14

Clinical Trials 35

CHAPTER 3. CLINICAL TRIALS AND REFLEX SYMPATHETIC DYSTROPHY SYNDROME Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning reflex sympathetic dystrophy syndrome.

What Is a Clinical Trial?15 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for reflex sympathetic dystrophy syndrome is to try it on patients in a clinical trial.

The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm.

15

36 Reflex Sympathetic Dystrophy Syndrome

What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: ·

Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely.

·

Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on reflex sympathetic dystrophy syndrome.

·

Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for reflex sympathetic dystrophy syndrome compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment.

How Is a Clinical Trial Conducted? Various organizations support clinical trials at medical centers, hospitals, universities, and doctors’ offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your visits. All doctors and researchers who take part in the study on reflex sympathetic dystrophy syndrome carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat you in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on reflex sympathetic dystrophy syndrome. In other clinical trials, where a new

Clinical Trials 37

surgery or device (not a medicine) is being tested, patients in the control group may receive a “sham treatment.” This treatment, like a placebo, has no effect on reflex sympathetic dystrophy syndrome and does not harm patients. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to participate in a clinical trial, you will not know which group you will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request to receive the new treatment instead of the placebo or sham treatment. Often, you will not know until the study is over whether you have been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the patients or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how reflex sympathetic dystrophy syndrome develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for reflex sympathetic dystrophy syndrome. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a disease or disorder develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a disease or disorder usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Patients in a Clinical Trial? Not everyone can take part in a clinical trial for a specific disease or disorder. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of disease or disorder, as well as, the age and previous treatment history of the patient. You or your doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you are interested in joining a clinical trial, your doctor must contact one of the trial’s investigators and provide details about your diagnosis and medical history.

38 Reflex Sympathetic Dystrophy Syndrome

If you participate in a clinical trial, you may be required to have a number of medical tests. You may also need to take medications and/or undergo surgery. Depending upon the treatment and the examination procedure, you may be required to receive inpatient hospital care. Or, you may have to return to the medical facility for follow-up examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.

Recent Trials on Reflex Sympathetic Dystrophy Syndrome The National Institutes of Health and other organizations sponsor trials on various diseases and disorders. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every disease and disorder at all times. The following lists recent trials dedicated to reflex sympathetic dystrophy syndrome.16 If the trial listed by the NIH is still recruiting, you may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your physician who can help you determine if you might benefit from participation. ·

Neurotropin to Treat Acute Dental and Chronic Neural Pain Condition(s): Causalgia; Facial Pain; Reflex Sympathetic Dystrophy Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Dental and Craniofacial Research (NIDCR) Purpose - Excerpt: This study will examine the effectiveness of the drug neurotropin in treating acute pain after tooth extraction and chronic pain after injury to a limb or a large nerve. Three groups of patients will participate in this study: 1) dental patients undergoing removal of impacted third molars (wisdom teeth); 2) patients with chronic regional pain syndrome type 1, or CRPS-I (also called reflex sympathetic dystrophy); and 3) patients with chronic regional pain syndrome type 2, or CRPS-II. CRPS-I is pain that develops after relatively minor injury to

16

These are listed at www.ClinicalTrials.gov.

Clinical Trials 39

an arm or leg, but lasts much longer and is much more severe than would normally be expected. CRPS-II is pain resulting from injury to a large nerve. Candidates will have a history and physical examination, blood tests, electrocardiogram and, for dental patients, oral examination and dental X-rays to confirm the need for third molar extraction. Participants will undergo the following tests and procedures: Dental patients will have oral surgery to remove their upper and lower third molars on one side. Before surgery, they will be given two injections: a local anesthetic (lidocaine) and a sedative (midazolam). They will also receive neurotropin tablets or placebo-look-alike tablets with no active medicine1 hour before surgery, several hours after surgery and every 6 hours for the next 2 days. If needed, patients may also take a standard painkiller that will be supplied to them. After 2 days they will be given a different painkiller to use for the rest of the recovery period. After at least one week, patients will return for removal of the third molars on the other side and will repeat the drug regimen described above, except patients who received placebo for the first surgery will receive neutropin for the second surgery, and vice versa. Neither the patients nor the doctors will know who received placebo and who received neutropin for each surgery until the study is over. Patients with CRPS I and II will receive an individualized regimen of physical therapy and standard treatment to control their pain. In addition, they will receive neutropin or placebo tablets for 5 weeks, then no trial medicine for at least 1 week, and then the other trial drug for the next 5 weeks. That is, patients who took placebo the first 5 weeks will take neutropin the second 5 weeks and vice versa. Neither the patients nor the doctors will know who received which drug during the two intervals until the study is over. Patients will complete questionnaires about their pain, quality of life, and ability to perform daily living activities. They will have various tests to measure pain (such as sensitivity to heat and cold, to an electric current, to a mild pin prick, etc.); to provide information about changes in their condition (such as tests of range of motion of joints and limb size); to measure blood circulation and sweating in the arm or leg (such as measurements of blood flow to the limb, skin temperature, and sweat production), and other procedures. Phase(s): Phase II Study Type: Interventional Contact(s): Maryland; National Institute of Dental And Craniofacial Research (NIDCR), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222 [email protected]; TTY 1-866-411-1010

40 Reflex Sympathetic Dystrophy Syndrome

Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00006289;jsessionid=B06B9E 548DFCF5ABB24564425B4A2F66 ·

Study of Proteins Associated with Complex Regional Pain Syndrome Condition(s): Complex Regional Pain Syndromes; Healthy Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Dental and Craniofacial Research (NIDCR) Purpose - Excerpt: This study will try to learn more about complex regional pain syndrome, or CRPS (previously known as reflex sympathetic dystrophy, spreading neuralgia, and sympathalgia), by examining the release of small proteins in the blood of patients with this condition. Patients with CRPS usually have three types of symptoms: Sensory abnormalities - increased sensitivity to pain or a painful reaction to a harmless stimulus - Perfusion abnormalities - alterations in blood flow, temperature abnormality, swelling, decrease or increased nail growth, and hair and skin changes - Motor abnormalities - weakness, guarding (Holding the limb in such a fashion that it minimizes accidental or intentional contact from possible sources of pain), and atrophy (wasting) The cause of CRPS is unknown, and there are no definitive diagnostic tests for the condition. Because early treatment improves the prognosis of CRPS, a test that enables early diagnosis would be important for optimal medical management. The findings of this study may contribute to the development of such a test and possibly new drug treatments. Normal healthy volunteers and patients of any age with complex regional pain syndrome who are in otherwise good general health may be eligible for this study. Participants will have a medical history, physical examination and collection of a blood sample. They will fill out several questionnaires, providing information on their health, personality, mood, pain levels, and symptoms. Participation in the study requires one outpatient clinic visit. Study Type: Observational Contact(s): Maryland; National Institute of Dental And Craniofacial Research (NIDCR), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222 [email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00033969;jsessionid=B06B9E 548DFCF5ABB24564425B4A2F66

Clinical Trials 41

Benefits and Risks17 What Are the Benefits of Participating in a Clinical Trial? If you are interested in a clinical trial, it is important to realize that your participation can bring many benefits to you and society at large: ·

A new treatment could be more effective than the current treatment for reflex sympathetic dystrophy syndrome. Although only half of the participants in a clinical trial receive the experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over.

·

If the treatment is effective, then it may improve health or prevent diseases or disorders.

·

Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over.

·

People who take part in trials contribute to scientific discoveries that may help other people with reflex sympathetic dystrophy syndrome. In cases where certain diseases or disorders run in families, your participation may lead to better care or prevention for your family members. The Informed Consent

Once you agree to take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial’s risks and benefits, the researcher’s expectations of you, and your rights as a patient.

What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment you

This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f291. 17

42 Reflex Sympathetic Dystrophy Syndrome

receive may cause side effects that are serious enough to require medical attention.

How Is Patient Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect patients can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital’s Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect patient safety. During a clinical trial, doctors will closely watch you to see if the treatment is working and if you are experiencing any side effects. All the results are carefully recorded and reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully monitor each clinical trial and can recommend that a study be stopped at any time. You will only be asked to take part in a clinical trial as a volunteer giving informed consent. What Are a Patient’s Rights in a Clinical Trial? If you are eligible for a clinical trial, you will be given information to help you decide whether or not you want to participate. As a patient, you have the right to: ·

Information on all known risks and benefits of the treatments in the study.

·

Know how the researchers plan to carry out the study, for how long, and where.

·

Know what is expected of you.

·

Know any costs involved for you or your insurance provider.

·

Know before any of your medical or personal information is shared with other researchers involved in the clinical trial.

·

Talk openly with doctors and ask any questions.

After you join a clinical trial, you have the right to: ·

Leave the study at any time. Participation is strictly voluntary. However, you should not enroll if you do not plan to complete the study.

·

Receive any new information about the new treatment.

·

Continue to ask questions and get answers.

Clinical Trials 43

·

Maintain your privacy. Your name will not appear in any reports based on the study.

·

Know whether you participated in the treatment group or the control group (once the study has been completed).

What about Costs? In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should find out about costs before committing to participation in the trial. If you have health insurance, find out exactly what it will cover. If you don’t have health insurance, or if your insurance company will not cover your costs, talk to the clinic staff about other options for covering the cost of your care. What Should You Ask before Deciding to Join a Clinical Trial? Questions you should ask when thinking about joining a clinical trial include the following: ·

What is the purpose of the clinical trial?

·

What are the standard treatments for reflex sympathetic dystrophy syndrome? Why do researchers think the new treatment may be better? What is likely to happen to me with or without the new treatment?

·

What tests and treatments will I need? Will I need surgery? Medication? Hospitalization?

·

How long will the treatment last? How often will I have to come back for follow-up exams?

·

What are the treatment’s possible benefits to my condition? What are the short- and long-term risks? What are the possible side effects?

·

Will the treatment be uncomfortable? Will it make me feel sick? If so, for how long?

·

How will my health be monitored?

·

Where will I need to go for the clinical trial? How will I get there?

·

How much will it cost to be in the study? What costs are covered by the study? How much will my health insurance cover?

44 Reflex Sympathetic Dystrophy Syndrome

·

Will I be able to see my own doctor? Who will be in charge of my care?

·

Will taking part in the study affect my daily life? Do I have time to participate?

·

How do I feel about taking part in a clinical trial? Are there family members or friends who may benefit from my contributions to new medical knowledge?

Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members, and physicians with current information about clinical research across the broadest number of diseases and conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with most studies being conducted in the United States. ClinicalTrials.gov receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “reflex sympathetic dystrophy syndrome” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: ·

For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/

·

For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html

·

For trials on neurological disorders and stroke, visit and search the Web site sponsored by the National Institute of Neurological Disorders and Stroke of the NIH: http://www.ninds.nih.gov/funding/funding_opportunities.htm#Clinica l_Trials

Clinical Trials 45

General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library. These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·

A Guide to Patient Recruitment : Today’s Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001), CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna

·

A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna

·

The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna

·

The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna

·

Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna

·

Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna

·

Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna

46 Reflex Sympathetic Dystrophy Syndrome

Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Extraction: The process or act of pulling or drawing out. [EU] Facial: Of or pertaining to the face. [EU] Midazolam: A short-acting compound, water-soluble at pH less than 4 and lipid-soluble at physiological pH. It is a hypnotic-sedative drug with anxiolytic and amnestic properties. It is used for sedation in dentistry, cardiac surgery, endoscopic procedures, as preanesthetic medication, and as an adjunct to local anesthesia. Because of its short duration and cardiorespiratory stability, it is particularly useful in poor-risk, elderly, and cardiac patients. [NIH] Oral: Pertaining to the mouth, taken through or applied in the mouth, as an oral medication or an oral thermometer. [EU] Perfusion: 1. the act of pouring over or through, especially the passage of a fluid through the vessels of a specific organ. 2. a liquid poured over or through an organ or tissue. [EU] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]

Sedative: 1. allaying activity and excitement. 2. an agent that allays excitement. [EU]

47

PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL

ABOUT PART II In Part II, we introduce you to additional resources and advanced research on reflex sympathetic dystrophy syndrome. All too often, patients who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on reflex sympathetic dystrophy syndrome. In Part II, as in Part I, our objective is not to interpret the latest advances on reflex sympathetic dystrophy syndrome or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with reflex sympathetic dystrophy syndrome is suggested.

Studies 49

CHAPTER 4. STUDIES DYSTROPHY SYNDROME

ON

REFLEX

SYMPATHETIC

Overview Every year, academic studies are published on reflex sympathetic dystrophy syndrome or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on reflex sympathetic dystrophy syndrome. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on reflex sympathetic dystrophy syndrome and teach you how to keep current on new studies as they are published or undertaken by the scientific community.

The Combined Health Information Database The Combined Health Information Database summarizes studies across numerous federal agencies. To limit your investigation to research studies and reflex sympathetic dystrophy syndrome, you will need to use the advanced search options. First, go to http://chid.nih.gov/index.html. From there, select the “Detailed Search” option (or go directly to that page with the following hyperlink: http://chid.nih.gov/detail/detail.html). The trick in

50 Reflex Sympathetic Dystrophy Syndrome

extracting studies is found in the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Journal Article.” At the top of the search form, select the number of records you would like to see (we recommend 100) and check the box to display “whole records.” We recommend that you type in “reflex sympathetic dystrophy syndrome” (or synonyms) into the “For these words:” box. Consider using the option “anywhere in record” to make your search as broad as possible. If you want to limit the search to only a particular field, such as the title of the journal, then select this option in the “Search in these fields” drop box. The following is a sample of what you can expect from this type of search: ·

Short-and Long-term Outcomes of Children With Complex Regional Pain Syndrome Type I Treated With Exercise Therapy Source: Clinical Journal of Pain. 15(3): 218-223. September 1999. Summary: This journal article provides health professionals with information on a prospective followup study that investigated short term and long term outcomes in children who had complex regional pain syndrome (CRPS) type I and were treated with exercise therapy. The study population consisted of 103 children with CRPS. Forty-nine of these children were followed for more than 2 years. Most participants received a daily program of 4 hours of aerobic, functionally directed exercises, 1 to 2 hours of hydrotherapy, and desensitization. No medications or modalities were used. All the children had a screening psychological evaluation, and 79 were referred for psychological counseling. Outcomes included pain, presence of physical dysfunction, or recurrent episodes of CRPS or other disproportional musculoskeletal pain. The study found that complete resolution of pain and return to full function occurred in 95 patients. Of those followed for more than 2 years, 43 were symptom free, 5 were fully functional but had some continued pain, and 1 had functional limitations. The median time to recurrence was 2 months. The second episode occurred within the first 6 months after initial resolution in 79 percent of these patients. The article concludes that intense exercise therapy is effective in initially treating childhood CRPS and is associated with low rate of long term symptoms or dysfunction. 3 tables and 24 references. (AA-M).

Studies 51

Federally-Funded Research on Reflex Sympathetic Dystrophy Syndrome The U.S. Government supports a variety of research studies relating to reflex sympathetic dystrophy syndrome and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of Health.18 CRISP (Computerized Retrieval of Information on Scientific Projects) is a searchable database of federally-funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit the site at http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket. You can perform targeted searches by various criteria including geography, date, as well as topics related to reflex sympathetic dystrophy syndrome and related conditions. For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally-funded studies use animals or simulated models to explore reflex sympathetic dystrophy syndrome and related conditions. In some cases, therefore, it may be difficult to understand how some basic or fundamental research could eventually translate into medical practice.

The National Library of Medicine: PubMed One of the quickest and most comprehensive ways to find academic studies in both English and other languages is to use PubMed, maintained by the National Library of Medicine. The advantage of PubMed over previously mentioned sources is that it covers a greater number of domestic and foreign references. It is also free to the public.19 If the publisher has a Web site that offers full text of its journals, PubMed will provide links to that site, as well as to sites offering other related data. User registration, a subscription fee, or

Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH). 19 PubMed was developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) at the National Institutes of Health (NIH). The PubMed database was developed in conjunction with publishers of biomedical literature as a search tool for accessing literature citations and linking to full-text journal articles at Web sites of participating publishers. Publishers that participate in PubMed supply NLM with their citations electronically prior to or at the time of publication. 18

52 Reflex Sympathetic Dystrophy Syndrome

some other type of fee may be required to access the full text of articles in some journals. To generate your own bibliography of studies dealing with reflex sympathetic dystrophy syndrome, simply go to the PubMed Web site at www.ncbi.nlm.nih.gov/pubmed. Type “reflex sympathetic dystrophy syndrome” (or synonyms) into the search box, and click “Go.” The following is the type of output you can expect from PubMed for “reflex sympathetic dystrophy syndrome” (hyperlinks lead to article summaries): ·

Autogenic training as an effective treatment for reflex neurovascular dystrophy: a case report. Author(s): Kawano M, Matsuoka M, Kurokawa T, Tomita S, Mizuno Y, Ueda K. Source: Acta Paediatr Jpn. 1989 August; 31(4): 500-3. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2514577&dopt=Abstract

·

Effects of qigong on late-stage complex regional pain syndrome. Author(s): Wu WH, Bandilla E, Ciccone DS, Yang J, Cheng SC, Carner N, Wu Y, Shen R. Source: Alternative Therapies in Health and Medicine. 1999 January; 5(1): 45-54. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9893315&dopt=Abstract

Vocabulary Builder Aerobic: 1. having molecular oxygen present. 2. growing, living, or occurring in the presence of molecular oxygen. 3. requiring oxygen for respiration. [EU] Anaesthesia: Loss of feeling or sensation. Although the term is used for loss of tactile sensibility, or of any of the other senses, it is applied especially to loss of the sensation of pain, as it is induced to permit performance of surgery or other painful procedures. [EU] Cardiovascular: Pertaining to the heart and blood vessels. [EU] Desensitization: The prevention or reduction of immediate hypersensitivity reactions by administration of graded doses of allergen; called also hyposensitization and immunotherapy. [EU] Orthopaedic:

Pertaining to the correction of deformities of the

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musculoskeletal system; pertaining to orthopaedics. [EU] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Rheumatology: A subspecialty of internal medicine concerned with the study of inflammatory or degenerative processes and metabolic derangement of connective tissue structures which pertain to a variety of musculoskeletal disorders, such as arthritis. [NIH]

Books 55

CHAPTER 5. BOOKS ON REFLEX SYMPATHETIC DYSTROPHY SYNDROME Overview This chapter provides bibliographic book references relating to reflex sympathetic dystrophy syndrome. You have many options to locate books on reflex sympathetic dystrophy syndrome. The simplest method is to go to your local bookseller and inquire about titles that they have in stock or can special order for you. Some patients, however, feel uncomfortable approaching their local booksellers and prefer online sources (e.g. www.amazon.com and www.bn.com). In addition to online booksellers, excellent sources for book titles on reflex sympathetic dystrophy syndrome include the Combined Health Information Database and the National Library of Medicine. Once you have found a title that interests you, visit your local public or medical library to see if it is available for loan.

Book Summaries: Federal Agencies The Combined Health Information Database collects various book abstracts from a variety of healthcare institutions and federal agencies. To access these summaries, go to http://chid.nih.gov/detail/detail.html. You will need to use the “Detailed Search” option. To find book summaries, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer. For the format option, select “Monograph/Book.” Now type “reflex sympathetic dystrophy syndrome” (or synonyms) into the “For these words:” box. You will only receive results on books. You should check back periodically with this database which is updated every 3 months. The following is a typical result when searching for books on reflex sympathetic dystrophy syndrome:

56 Reflex Sympathetic Dystrophy Syndrome

·

Essentials of Musculoskeletal Care. 2nd ed Source: Rosemont, IL: American Academy of Orthopaedic Surgeons (AAOS). 2001. 756 p. Contact: Available from American Academy of Orthopaedic Surgeons (AAOS). 6300 North River Road, Rosemont, IL 60018-4262. (800) 626-6726 (toll-free) or (847) 823-7186. Fax (800) 823-8025 (toll-free) or (847) 8238025. E-mail: [email protected]. Website: www.aaos.org. Price: $105.00 for nonmembers; $90.00 AAOS members; $80.00 for residents; plus shipping and handling. ISBN 0892032170. Summary: This book serves as a guide and easy reference to provide health professionals with information on the diagnosis and management of common musculoskeletal conditions. The book begins with a section on general orthopedics. This section presents information on the principles of evaluating and examining a patient with musculoskeletal complaints and discusses pharmacological and nonpharmacological modes of treatment. In addition, the section describes various musculoskeletal conditions, including amputations, rheumatoid arthritis, osteoarthritis, septic arthritis, compartment syndrome, crystalline deposition diseases, diffuse idiopathic skeletal hyperostosis, falls and other injuries, fibromyalgia syndrome, fractures, Lyme disease, osteomyelitis, osteoporosis, overuse syndromes, reflex sympathetic dystrophy and complex regional pain syndromes, seronegative spondyloarthropathies, sprains and strains, soft tissue and bone tumors, and venous thrombosis. This is followed by sections that deal with common conditions affecting the shoulder girdle, elbow and forearm, hand and wrist, hip and thigh, knee and lower leg, foot and ankle, and spine, including acute and chronic or repetitive injuries and degenerative, inflammatory, or idiopathic conditions. Information in these sections includes synonyms for and red flags associated with each condition; the definition, clinical symptoms, diagnosis, differential diagnosis, adverse outcomes, and treatment of the condition; diagnostic tests; and adverse treatment outcomes. The final section focuses on pediatric orthopedics. The book includes a glossary of ICD-9 codes, a list of common orthopedic terms and their definitions, and a subject index. Numerous figures and 36 tables.

Book Summaries: Online Booksellers Commercial Internet-based booksellers, such as Amazon.com and Barnes & Noble.com, offer summaries which have been supplied by each title’s

Books 57

publisher. Some summaries also include customer reviews. Your local bookseller may have access to in-house and commercial databases that index all published books (e.g. Books in PrintÒ).

The National Library of Medicine Book Index The National Library of Medicine at the National Institutes of Health has a massive database of books published on healthcare and biomedicine. Go to the following Internet site, http://locatorplus.gov/, and then select “Search LOCATORplus.” Once you are in the search area, simply type “reflex sympathetic dystrophy syndrome” (or synonyms) into the search box, and select “books only.” From there, results can be sorted by publication date, author, or relevance. The following was recently catalogued by the National Library of Medicine:20 ·

Abdominal brain [microform]. Author: by Leila G. Bedell; Year: 1885; Chicaog: Gross ; Delbridge, 1885

·

Algodystrophy, diagnosis and therapy of a frequent disease of the locomotor apparatus. Author: P. Doury, Y. Dirheimer, S. Pattin; translated by M.-Th. Wackenheim; Year: 1981; Berlin; New York: Springer-Verlag, 1981; ISBN: 0387106243 (U.S.) http://www.amazon.com/exec/obidos/ASIN/0387106243/icongroupin terna

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Autonomic nervous system testing: an AAEM workshop. Author: John M. Ravits; Year: 1990; Rochester, MN (21 Second St. S.W., Suite 306, Rochester 55902): American Association of Electrodiagnostic Medicine, 1990

·

Bone and mineral manual: a practical guide. Author: editors, Michael Kleerekoper, Ethel Siris, Michael McClung; Year: 1999; San Diego: Academic Press, c1999; ISBN: 0124126502 (alk. paper)

In addition to LOCATORPlus, in collaboration with authors and publishers, the National Center for Biotechnology Information (NCBI) is adapting biomedical books for the Web. The books may be accessed in two ways: (1) by searching directly using any search term or phrase (in the same way as the bibliographic database PubMed), or (2) by following the links to PubMed abstracts. Each PubMed abstract has a “Books” button that displays a facsimile of the abstract in which some phrases are hypertext links. These phrases are also found in the books available at NCBI. Click on hyperlinked results in the list of books in which the phrase is found. Currently, the majority of the links are between the books and PubMed. In the future, more links will be created between the books and other types of information, such as gene and protein sequences and macromolecular structures. See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books.

20

58 Reflex Sympathetic Dystrophy Syndrome

http://www.amazon.com/exec/obidos/ASIN/0124126502/icongroupin terna ·

Catecholamines and heart disease. Author: editor, Pallab K. Ganguly; Year: 1991; Boca Raton: CRC Press, c1991; ISBN: 0849358108 http://www.amazon.com/exec/obidos/ASIN/0849358108/icongroupin terna

·

Central neural mechanisms in cardiovascular regulation. Author: George Kunos, John Ciriello, editors; Year: 1991; Boston: Birkhaüser, c1991; ISBN: 0817635459 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0817635459/icongroupin terna

·

Chronic pain: reflex sympathetic dystrophy, prevention and management. Author: Hooshang Hooshmand; Year: 1993; Boca Raton: CRC Press, c1993; ISBN: 0849386675 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0849386675/icongroupin terna

·

Dystrophia myotonica and related disorders, by J. E. Caughey and N. C. Myrianthopoulos. Author: Caughey, J. E; Year: 1963; Springfield, Ill., Thomas [c1963]

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Experimental muscular dystrophies in animals; a comparative study, by Ira Rockwood Telford, in collaboration with Larus Einarson. Author: Telford, Ira Rockwood, 1907-; Year: 1971; Springfield, Ill., Thomas [c1971]

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Family screening and molecular diagnosis of myotonic dystrophy . Author: Harper, Peter S; Year: 1998; Montréal: Conseil d'évaluation des technologies de la santé du Québec, [1998]; ISBN: 2550339231

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Genetic counselling: practice and principles. Author: edited by Angus Clarke; Year: 1994; London; New York: Routledge, 1994; ISBN: 0415082577 (hbk.: alk. paper)

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Genetic testing of children. Author: [edited by] Angus Clarke; Year: 1998; Oxford; Washington, D.C.: BIOS Scientific, 1998; ISBN: 1859961460 http://www.amazon.com/exec/obidos/ASIN/1859961460/icongroupin terna

·

Intractable Neurological Disorders, Human Genome Research and Society: Proceedings of the Third International Bioethics Seminar in Fukui, Japan, 19-21 Nov 1993. Author: [edited by] Norio Fujiki, Darryl R.J. Macer; Year: 1994; Christchurch, New Zealand: Eubios Ethics Institute, 1994; ISBN: 0908897065 http://www.amazon.com/exec/obidos/ASIN/0908897065/icongroupin terna

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·

Muscular dystrophy and other inherited diseases of skeletal muscle in animals. Author: edited by John B. Harris; Year: 1979; New York: New York Academy of Sciences, 1979; ISBN: 0897660056 http://www.amazon.com/exec/obidos/ASIN/0897660056/icongroupin terna

·

Myotonic dystrophy. Author: Peter Harper; with a chapter on Molecular and cell biology by J. David Brook and Emma Newman; Year: 2001; London; New York: W. B. Saunders, 2001; ISBN: 0702021520 http://www.amazon.com/exec/obidos/ASIN/0702021520/icongroupin terna

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Observations on life as the cause of the vital phenomena. Author: Malliani, Alberto; Year: 1842; [London]: Printed by J.L. Cox ; Sons, 75, Great Queen Street, Lincoln's-Inn Fields, [1842]

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Pain in the shoulder and arm: an integrated view. Author: edited by J. M. Greep ... [et al.]; Year: 1979; The Hague; Boston: Martinus Nihhoff, 1979; ISBN: 9024721466 http://www.amazon.com/exec/obidos/ASIN/9024721466/icongroupin terna

·

Principles of cardiovascular neural regulation in health and disease. Author: by Alberto Malliani; Year: 2000; Boston : Kluwer Academic, c2000; ISBN: 0792377753 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0792377753/icongroupin terna

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Reflex sympathetic dystrophy: a reappraisal. Author: editors, Wilfred Jänig, Michael Stanton-Hicks; Year: 1996; Seattle: IASP Press, c1996; ISBN: 0931092132 http://www.amazon.com/exec/obidos/ASIN/0931092132/icongroupin terna

·

Reflex sympathetic dystrophy: pathophysiological mechanisms and clinical implications. Author: edited by Wilfrid Jänig and Robert F. Schmidt; with contributions by N. Attal ... [et al.]; Year: 1992; Weinheim, Federal Republic of Germany; New York, NY, USA: VCH, c1992; ISBN: 3527154965 (VCH, Weinheim: alk. paper) http://www.amazon.com/exec/obidos/ASIN/3527154965/icongroupin terna

·

Reflex sympathetic dystrophy. Author: edited by Michael StantonHicks, Wilfrid Jänig, Robert A. Boas; Year: 1990; Boston: Kluwer Academic Publishers, c1990; ISBN: 0792305272 http://www.amazon.com/exec/obidos/ASIN/0792305272/icongroupin terna

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·

RSD: reflex sympathetic dystrophy. Author: by Roger Williams; Year: 1995; Bethesda, MD: American Occupational Therapy Association, c1995

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Studies on the metabolism of histamine in dystrophia myotonica. Author: by Ottar Sjaastad; Year: 1967; Oslo: Universitetsforlaget, c1967

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Sympathetic innervation of skeletal muscles, organs of sense, and of the central nervous system: address delivered on April 19th, 1932 at a meeting of the Sechenov Society of Physiologists in Leningrad. Author: L.A. Orbeli; Year: 1935; Leningrad: State Publishing House for Biological and Medical Literature, Leningrad Branch, 1935

·

Sympathoadrenal response to resistance exercise in men, women and pubescent boys: with special reference to interaction with other hormones and neuromuscular performance. Author: Teemu Pullinen; Year: 2001; Jyväskylä: University of Jyväskylä, 2001; ISBN: 9513909743

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Time bombs in the human genome: exploding triplets that cause disease. Author: Michal S. Brown; Year: 1993; [Dallas: University of Texas Southwestern Medical Center, 1993]

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Treatise on emotional disorders of the sympathetic system of nerves. Author: by William Murray ..; Year: 1872; New York: William Wood ; Company, 1872

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Trinucleotide diseases and instability. Author: Ben A. Oostra, ed; Year: 1998; Berlin; New York: Springer, c1998; ISBN: 3540639934 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/3540639934/icongroupin terna

·

Validation of spectral analysis as a noninvasive tool to assess autonomic regulation of cardiovascular function. Final report, May 15, 1993 to December 31, 1996. Author: C.F. Knapp, J.M. Evans; Year: 1996; Washington, DC: NASA Headquarters, 1996

Chapters on Reflex Sympathetic Dystrophy Syndrome Frequently, reflex sympathetic dystrophy syndrome will be discussed within a book, perhaps within a specific chapter. In order to find chapters that are specifically dealing with reflex sympathetic dystrophy syndrome, an excellent source of abstracts is the Combined Health Information Database. You will need to limit your search to book chapters and reflex sympathetic dystrophy syndrome using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find book chapters, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Book Chapter.” By making these selections and typing in

Books 61

“reflex sympathetic dystrophy syndrome” (or synonyms) into the “For these words:” box, you will only receive results on chapters in books. The following is a typical result when searching for book chapters on reflex sympathetic dystrophy syndrome: ·

Algodystrophy (Reflex Sympathetic Dystrophy) Source: in Maddison, P.J.; et al., Eds. Oxford Textbook of Rheumatology. Volume 2. New York, NY: Oxford University Press, Inc. 1993. p. 10821088. Contact: Available from Oxford University Press, Inc., New York, NY. Summary: This chapter for health professionals presents an overview of a pain syndrome known as algodystrophy. Data on the prevalence of algodystrophy are provided. Factors that trigger algodystrophy are identified, including injuries, surgical procedures, and disorders of the nervous system. The clinical features of algodystrophy are described, including pain and swelling. The involvement of the arm, the leg, and the hip in algodystrophy is discussed. Techniques used in the diagnosis of algodystrophy are identified. The pathophysiology of algodystrophy is described. The principles of managing patients with algodystrophy are presented, and guidelines for managing patients of various ages with different levels of severity of algodystrophy are provided. 45 references, 1 figure, and 6 tables.

·

Section One: General Orthopaedics Source: in Greene, W.B., Ed. Essentials of Musculoskeletal Care. 2nd ed. Rosemont, IL: American Academy of Orthopaedic Surgeons (AAOS). 2001. p. 1-102. Contact: Available from American Academy of Orthopaedic Surgeons (AAOS). 6300 North River Road, Rosemont, IL 60018-4262. (800) 626-6726 (toll-free) or (847) 823-7186. Fax (800) 823-8025 (toll-free) or (847) 8238025. E-mail: [email protected]. Website: www.aaos.org. Price: $105.00 for nonmembers; $90.00 AAOS members; $80.00 for residents; plus shipping and handling. ISBN 0892032170. Summary: This section of a book on musculoskeletal care provides health professionals with an overview of general orthopedics. The section presents information on the principles of evaluating and examining a patient presenting with musculoskeletal problems, focusing on inspection, palpation, range of motion, muscle testing, and motor and sensory evaluation. This is followed by a description of types of lower extremity amputations and a discussion of the use of canes, crutches, and walkers. In addition, the section provides an overview of conditions that

62 Reflex Sympathetic Dystrophy Syndrome

affect multiple joints or multiple regions and conditions that have systemic effects, including rheumatoid arthritis, osteoarthritis (OA), septic arthritis, compartment syndrome, crystalline deposition diseases, diffuse idiopathic skeletal hyperostosis, falls and other injuries, fibromyalgia syndrome, fractures, Lyme disease, osteomyelitis, osteoporosis, overuse syndromes, reflex sympathetic dystrophy and complex regional pain syndromes, seronegative spondyloarthropathies, sprains and strains, soft tissue and bone tumors, and venous thrombosis. Information includes synonyms for and red flags associated with each condition; the definition, clinical symptoms, diagnosis, differential diagnosis, adverse outcomes, and treatment of the condition; diagnostic tests; and adverse treatment outcomes. Other topics include corticosteroid injections, imaging principles and techniques, nonorganic symptoms and signs, nonsteroidal antiinflammatory drugs, alternative therapies for OA, rehabilitation principles and therapeutic modalities, splinting techniques, and sports medicine principles. 27 figures and 16 tables.

General Home References In addition to references for reflex sympathetic dystrophy syndrome, you may want a general home medical guide that spans all aspects of home healthcare. The following list is a recent sample of such guides (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Adams & Victor’s Principles Of Neurology by Maurice Victor, et al; Hardcover - 1692 pages; 7th edition (December 19, 2000), McGraw-Hill Professional Publishing; ISBN: 0070674973; http://www.amazon.com/exec/obidos/ASIN/0070674973/icongroupinterna · Clinical Neuroanatomy Made Ridiculously Simple (MedMaster Series, 2000 Edition) by Stephen Goldberg; Paperback: 97 pages; 2nd edition (February 15, 2000), Medmaster; ISBN: 0940780461; http://www.amazon.com/exec/obidos/ASIN/0940780461/icongroupinterna · It’s Not a Tumor!: The Patient’s Guide to Common Neurological Problems by Robert Wiedemeyer; Paperback: (January 1996), Boxweed Pub; ISBN: 0964740796; http://www.amazon.com/exec/obidos/ASIN/0964740796/icongroupinterna · Neurology for the Non-Neurologist by William J. Weiner (Editor), Christopher G. Goetz (Editor); Paperback (May 1999), Lippincott, Williams

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& Wilkins Publishers; ISBN: 0781717078; http://www.amazon.com/exec/obidos/ASIN/0781717078/icongroupinterna

Vocabulary Builder Ankle: That part of the lower limb directly above the foot. [NIH] Degenerative: Undergoing degeneration: tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Histamine: 1H-Imidazole-4-ethanamine. A depressor amine derived by enzymatic decarboxylation of histidine. It is a powerful stimulant of gastric secretion, a constrictor of bronchial smooth muscle, a vasodilator, and also a centrally acting neurotransmitter. [NIH] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH] Hyperostosis: Hypertrophy of bone; exostosis. [EU] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Innervation: 1. the distribution or supply of nerves to a part. 2. the supply of nervous energy or of nerve stimulus sent to a part. [EU] Locomotor: Of or pertaining to locomotion; pertaining to or affecting the locomotive apparatus of the body. [EU] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Neuroanatomy: Study of the anatomy of the nervous system as a specialty or discipline. [NIH] Neuromuscular: Pertaining to muscles and nerves. [EU] Orthopedics: A surgical specialty which utilizes medical, surgical, and physical methods to treat and correct deformities, diseases, and injuries to the skeletal system, its articulations, and associated structures. [NIH] Osteoarthritis: Noninflammatory degenerative joint disease occurring chiefly in older persons, characterized by degeneration of the articular cartilage, hypertrophy of bone at the margins, and changes in the synovial membrane. It is accompanied by pain and stiffness, particularly after

64 Reflex Sympathetic Dystrophy Syndrome

prolonged activity. [EU] Osteomyelitis: Inflammation of bone caused by a pyogenic organism. It may remain localized or may spread through the bone to involve the marrow, cortex, cancellous tissue, and periosteum. [EU] Palpation: Application of fingers with light pressure to the surface of the body to determine consistence of parts beneath in physical diagnosis; includes palpation for determining the outlines of organs. [NIH] Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from incidence, which refers to the number of new cases in the population at a given time. [NIH] Rheumatoid: Resembling rheumatism. [EU] Septic: Produced by or due to decomposition by microorganisms; putrefactive. [EU] Systemic: Pertaining to or affecting the body as a whole. [EU] Thrombosis: The formation, development, or presence of a thrombus. [EU] Venous: Of or pertaining to the veins. [EU]

Multimedia 65

CHAPTER 6. MULTIMEDIA ON REFLEX SYMPATHETIC DYSTROPHY SYNDROME Overview Information on reflex sympathetic dystrophy syndrome can come in a variety of formats. Among multimedia sources, video productions, slides, audiotapes, and computer databases are often available. In this chapter, we show you how to keep current on multimedia sources of information on reflex sympathetic dystrophy syndrome. We start with sources that have been summarized by federal agencies, and then show you how to find bibliographic information catalogued by the National Library of Medicine. If you see an interesting item, visit your local medical library to check on the availability of the title.

Bibliography: Multimedia on Reflex Sympathetic Dystrophy Syndrome The National Library of Medicine is a rich source of information on healthcare-related multimedia productions including slides, computer software, and databases. To access the multimedia database, go to the following Web site: http://locatorplus.gov/. Select “Search LOCATORplus.” Once in the search area, simply type in reflex sympathetic dystrophy syndrome (or synonyms). Then, in the option box provided below the search box, select “Audiovisuals and Computer Files.” From there, you can choose to sort results by publication date, author, or relevance. The following multimedia has been indexed on reflex sympathetic dystrophy syndrome. For more information, follow the hyperlink indicated:

66 Reflex Sympathetic Dystrophy Syndrome

·

Adrenergic control of metabolism with specific reference to physical exercise. Source: Department of Medicine, Emory University, School of Medicine; Year: 1980; Format: Videorecording; Atlanta: Emory Medical Television Network: [for loan or sale by A. W. Calhoun Medical Library], 1980

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Clinical aspects of reflex sympathetic dystrophy. Source: American Academy of Orthopaedic Surgeons, American Society for Surgery of the Hand; Year: 1973; Format: Slide; [Chicago, Ill.]: The Academy, [1973]

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Management of chronic pain. Source: with members of the Pain Treatment Service, Columbia University College of Physicians and Surgeons--Presbyterian Medical Center, New York; Leonard Brand, Howard L. Rosner, Robert H. Dworkin; Year: 1986; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, 1986

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Motor system and reflexes. Source: [presented by] W.B. Saunders Company; Year: 1998; Format: Videorecording; [Philadelphia]: W.B. Saunders Co., c1998

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Motor systems and reflexes: normal and abnormal signs. Source: Wayne State University College of Medicine and Ciba Pharmaceutical: produced by Rex Fleming; Year: 1962; Format: Motion picture; Summit, N.J.: Ciba: [for loan and sale by Wayne State Univ., Detroit, 1962]

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MRI of the musculoskeletal system. Source: the Radiological Society of North America; Year: 1989; Format: Videorecording; Oak Brook, Ill.: RSNA, c1989

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Myocardial pharmacological stress testing and myocardial sympathetic imaging with PET. Source: the Society of Nuclear Medicine; Year: 1990; Format: Slide; Oak Brook, Ill.: The Society, [1990]

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Normal infant reflexes and development. Source: [presented by] Therapy Skill Builders; Year: 1988; Format: Videorecording; Toronto, Ont.: Dept. of Occupational Therapy, Hospital of Sick Children, c1988

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Reflex sympathetic dystrophy: diagnosis and treatment. Source: Richard C. Belatti, Jr; Year: 1991; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, c1991

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Reflexes: their principles and changes in nervous diseases. Source: from the Department of Neurology, College of Physicians and Surgeons, Columbia University and the Neurological Institute; prepared by E. Herz and T.J. Putnam; Year: 1946; Format: Motion picture; [New York]: King's Crown Press, 1946

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Sympathetic pain syndromes ; Pain can kill. Source: Nineteenth Annual Scientific Meeting on Orofacial Pain and Temporomandibular Disorders;

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produced on location by Teach'em; Year: 1994; Format: Videorecording; [Chicago, IL: Teach'em, 1994] ·

Thoracoscopic transthoracic dorsal sympathectomy. Source: from the Film Library and Clinical Congress of ACS, American College of Surgeons; Year: 1993; Format: Videorecording; [Kingston, Ont.?]: R.F. Pace, c1993

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Treatment of reflex sympathetic dystrophy. Source: an AREN production; produced at the facilities of WQED/Pittsburgh by QED Enterprises; Year: 1990; Format: Videorecording; Pittsburgh, Pa.: Executive Communications, c1990

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Understanding shoulder. Source: hand syndrome / a Sacred Heart Medical Center production; Year: 1989; Format: Videorecording; Spokane, Wash.: The Center, c1989

·

Vasospastic disorders. Source: American College of Cardiology; produced by Heart House Learning Center and Heart House Television; Year: 1998; Format: Videorecording; [Bethesda, Md.]: The College, c1998

Vocabulary Builder Cardiology: The study of the heart, its physiology, and its functions. [NIH] Dorsal: 1. pertaining to the back or to any dorsum. 2. denoting a position more toward the back surface than some other object of reference; same as posterior in human anatomy; superior in the anatomy of quadrupeds. [EU] Ganglia: Clusters of multipolar neurons surrounded by a capsule of loosely organized connective tissue located outside the central nervous system. [NIH] Mobilization: The process of making a fixed part or stored substance mobile, as by separating a part from surrounding structures to make it accessible for an operative procedure or by causing release into the circulation for body use of a substance stored in the body. [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the nervous system. [NIH] Orofacial: Of or relating to the mouth and face. [EU] Prolapse: 1. the falling down, or sinking, of a part or viscus; procidentia. 2. to undergo such displacement. [EU]

Periodicals and News 69

CHAPTER 7. PERIODICALS AND NEWS ON REFLEX SYMPATHETIC DYSTROPHY SYNDROME Overview Keeping up on the news relating to reflex sympathetic dystrophy syndrome can be challenging. Subscribing to targeted periodicals can be an effective way to stay abreast of recent developments on reflex sympathetic dystrophy syndrome. Periodicals include newsletters, magazines, and academic journals. In this chapter, we suggest a number of news sources and present various periodicals that cover reflex sympathetic dystrophy syndrome beyond and including those which are published by patient associations mentioned earlier. We will first focus on news services, and then on periodicals. News services, press releases, and newsletters generally use more accessible language, so if you do chose to subscribe to one of the more technical periodicals, make sure that it uses language you can easily follow.

News Services & Press Releases Well before articles show up in newsletters or the popular press, they may appear in the form of a press release or a public relations announcement. One of the simplest ways of tracking press releases on reflex sympathetic dystrophy syndrome is to search the news wires. News wires are used by professional journalists, and have existed since the invention of the telegraph. Today, there are several major “wires” that are used by companies, universities, and other organizations to announce new medical breakthroughs. In the following sample of sources, we will briefly describe

70 Reflex Sympathetic Dystrophy Syndrome

how to access each service. These services only post recent news intended for public viewing.

PR Newswire Perhaps the broadest of the wires is PR Newswire Association, Inc. To access this archive, simply go to http://www.prnewswire.com. Below the search box, select the option “The last 30 days.” In the search box, type “reflex sympathetic dystrophy syndrome” or synonyms. The search results are shown by order of relevance. When reading these press releases, do not forget that the sponsor of the release may be a company or organization that is trying to sell a particular product or therapy. Their views, therefore, may be biased.

Reuters The Reuters’ Medical News database can be very useful in exploring news archives relating to reflex sympathetic dystrophy syndrome. While some of the listed articles are free to view, others can be purchased for a nominal fee. G to http://www.reutershealth.com/frame2/arch.html and search by “reflex sympathetic dystrophy syndrome” (or synonyms).

The NIH Within MEDLINEplus, the NIH has made an agreement with the New York Times Syndicate, the AP News Service, and Reuters to deliver news that can be browsed by the public. Search news releases at http://www.nlm.nih.gov/medlineplus/alphanews_a.html. MEDLINEplus allows you to browse across an alphabetical index. Or you can search by date at http://www.nlm.nih.gov/medlineplus/newsbydate.html. Often, news items are indexed by MEDLINEplus within their search engine.

Business Wire Business Wire is similar to PR Newswire. To access this archive, simply go to http://www.businesswire.com. You can scan the news by industry category or company name.

Periodicals and News 71

Internet Wire Internet Wire is more focused on technology than the other wires. To access this site, go to http://www.internetwire.com and use the “Search Archive” option. Type in “reflex sympathetic dystrophy syndrome” (or synonyms). As this service is oriented to technology, you may wish to search for press releases covering diagnostic procedures or tests that you may have read about.

Search Engines Free-to-view news can also be found in the news section of your favorite search engines (see the health news page at Yahoo: http://dir.yahoo.com/Health/News_and_Media/, or use this Web site’s general news search page http://news.yahoo.com/. Type in “reflex sympathetic dystrophy syndrome” (or synonyms). If you know the name of a company that is relevant to reflex sympathetic dystrophy syndrome, you can go to any stock trading Web site (such as www.etrade.com) and search for the company name there. News items across various news sources are reported on indicated hyperlinks.

BBC Covering news from a more European perspective, the British Broadcasting Corporation (BBC) allows the public free access to their news archive located at http://www.bbc.co.uk/. Search by “reflex sympathetic dystrophy syndrome” (or synonyms).

Newsletters on Reflex Sympathetic Dystrophy Syndrome Given their focus on current and relevant developments, newsletters are often more useful to patients than academic articles. You can find newsletters using the Combined Health Information Database (CHID). You will need to use the “Detailed Search” option. To access CHID, go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. Your investigation must limit the search to “Newsletter” and “reflex sympathetic dystrophy syndrome.” Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter.” By making these selections and typing in “reflex sympathetic dystrophy syndrome” or synonyms into the “For these

72 Reflex Sympathetic Dystrophy Syndrome

words:” box, you will only receive results on newsletters. The following list was generated using the options described above: ·

RSDSA Review Source: Haddonfield, NJ: Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA). 1994. 15 p. (average). Contact: Available from Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA). 116 Haddon Avenue, Suite D, Haddonfield, NJ 08033. (609) 795-8845; FAX (609) 795-8845. Price: Free with membership. Summary: This newsletter is intended for members and associates of the Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA). A typical issue includes articles on medical and social aspects of pain, coping with reflex sympathetic dystrophy, conference updates, address corrections and additions for support groups, a pen pal list, a question-and-answer section, news and announcements, personal interest stories, letters, and poetry written by patients.

Academic Periodicals covering Reflex Sympathetic Dystrophy Syndrome Academic periodicals can be a highly technical yet valuable source of information on reflex sympathetic dystrophy syndrome. We have compiled the following list of periodicals known to publish articles relating to reflex sympathetic dystrophy syndrome and which are currently indexed within the National Library of Medicine’s PubMed database (follow hyperlinks to view more information, summaries, etc., for each). In addition to these sources, to keep current on articles written on reflex sympathetic dystrophy syndrome published by any of the periodicals listed below, you can simply follow the hyperlink indicated or go to the following Web site: www.ncbi.nlm.nih.gov/pubmed. Type the periodical’s name into the search box to find the latest studies published. If you want complete details about the historical contents of a periodical, you can also the Web site: http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi. Here, type in the name of the journal or its abbreviation, and you will receive an index of published articles. At http://locatorplus.gov/ you can retrieve more indexing information on medical periodicals (e.g. the name of the publisher). Select the button “Search LOCATORplus.” Then type in the name of the journal and select the advanced search option “Journal Title Search.”

Periodicals and News 73

The following is a sample of periodicals which publish articles on reflex sympathetic dystrophy syndrome: ·

Alternative Therapies in Health and Medicine. (Altern Ther Health Med) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Al ternative+Therapies+in+Health+and+Medicine&dispmax=20&dispstart= 0

·

British Journal of Anaesthesia. (Br J Anaesth) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Bri tish+Journal+of+Anaesthesia&dispmax=20&dispstart=0

·

Clinical Rheumatology. (Clin Rheumatol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Cli nical+Rheumatology&dispmax=20&dispstart=0

·

Jama : the Journal of the American Medical Association. (JAMA) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ja ma+:+the+Journal+of+the+American+Medical+Association&dispmax=2 0&dispstart=0

·

Journal of Advanced Nursing. (J Adv Nurs) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Advanced+Nursing&dispmax=20&dispstart=0

·

Journal of Vascular Surgery : Official Publication, the Society for Vascular Surgery [and] International Society for Cardiovascular Surgery, North American Chapter. (J Vasc Surg) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Vascular+Surgery+:+Official+Publication,+the+Society+for+Va scular+Surgery+[and]+International+Society+for+Cardiovascular+Surge ry,+North+American+Chapter&dispmax=20&dispstart=0

·

Pediatric Neurology. (Pediatr Neurol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Pe diatric+Neurology&dispmax=20&dispstart=0

74 Reflex Sympathetic Dystrophy Syndrome

·

Physical Therapy. (Phys Ther) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ph ysical+Therapy&dispmax=20&dispstart=0

·

The Clinical Journal of Pain. (Clin J Pain) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+Clinical+Journal+of+Pain&dispmax=20&dispstart=0

·

The Journal of Bone and Joint Surgery. American Volume. (J Bone Joint Surg Am) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+Journal+of+Bone+and+Joint+Surgery.+American+Volume&dispmax= 20&dispstart=0

·

The Journal of Hand Surgery. (J Hand Surg [Am]) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+Journal+of+Hand+Surgery&dispmax=20&dispstart=0

·

The Journal of Orthopaedic and Sports Physical Therapy. (J Orthop Sports Phys Ther) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+Journal+of+Orthopaedic+and+Sports+Physical+Therapy&dispmax=20 &dispstart=0

Physician Guidelines and Databases 75

CHAPTER 8. PHYSICIAN GUIDELINES AND DATABASES Overview Doctors and medical researchers rely on a number of information sources to help patients with their conditions. Many will subscribe to journals or newsletters published by their professional associations or refer to specialized textbooks or clinical guides published for the medical profession. In this chapter, we focus on databases and Internet-based guidelines created or written for this professional audience.

NIH Guidelines For the more common diseases, The National Institutes of Health publish guidelines that are frequently consulted by physicians. Publications are typically written by one or more of the various NIH Institutes. For physician guidelines, commonly referred to as “clinical” or “professional” guidelines, you can visit the following Institutes: ·

Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm

·

National Institute of General Medical Sciences (NIGMS); fact sheets available at http://www.nigms.nih.gov/news/facts/

·

National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines: http://www.nlm.nih.gov/medlineplus/healthtopics.html

·

National Institute of Neurological Disorders and Stroke (NINDS); neurological disorder information pages available at http://www.ninds.nih.gov/health_and_medical/disorder_index.htm

76 Reflex Sympathetic Dystrophy Syndrome

NIH Databases In addition to the various Institutes of Health that publish professional guidelines, the NIH has designed a number of databases for professionals.21 Physician-oriented resources provide a wide variety of information related to the biomedical and health sciences, both past and present. The format of these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available. The following are referenced by the National Library of Medicine:22 ·

Bioethics: Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This information is provided in conjunction with the Kennedy Institute of Ethics located at Georgetown University, Washington, D.C.: http://www.nlm.nih.gov/databases/databases_bioethics.html

·

HIV/AIDS Resources: Describes various links and databases dedicated to HIV/AIDS research: http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html

·

NLM Online Exhibitions: Describes “Exhibitions in the History of Medicine”: http://www.nlm.nih.gov/exhibition/exhibition.html. Additional resources for historical scholarship in medicine: http://www.nlm.nih.gov/hmd/hmd.html

·

Biotechnology Information: Access to public databases. The National Center for Biotechnology Information conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information for the better understanding of molecular processes affecting human health and disease: http://www.ncbi.nlm.nih.gov/

·

Population Information: The National Library of Medicine provides access to worldwide coverage of population, family planning, and related health issues, including family planning technology and programs, fertility, and population law and policy: http://www.nlm.nih.gov/databases/databases_population.html

·

Cancer Information: Access to caner-oriented databases: http://www.nlm.nih.gov/databases/databases_cancer.html

Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINEplus (http://medlineplus.gov/ or http://www.nlm.nih.gov/medlineplus/databases.html). 22 See http://www.nlm.nih.gov/databases/databases.html. 21

Physician Guidelines and Databases 77

·

Profiles in Science: Offering the archival collections of prominent twentieth-century biomedical scientists to the public through modern digital technology: http://www.profiles.nlm.nih.gov/

·

Chemical Information: Provides links to various chemical databases and references: http://sis.nlm.nih.gov/Chem/ChemMain.html

·

Clinical Alerts: Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and mortality: http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html

·

Space Life Sciences: Provides links and information to space-based research (including NASA): http://www.nlm.nih.gov/databases/databases_space.html

·

MEDLINE: Bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the healthcare system, and the pre-clinical sciences: http://www.nlm.nih.gov/databases/databases_medline.html

·

Toxicology and Environmental Health Information (TOXNET): Databases covering toxicology and environmental health: http://sis.nlm.nih.gov/Tox/ToxMain.html

·

Visible Human Interface: Anatomically detailed, three-dimensional representations of normal male and female human bodies: http://www.nlm.nih.gov/research/visible/visible_human.html

While all of the above references may be of interest to physicians who study and treat reflex sympathetic dystrophy syndrome, the following are particularly noteworthy.

The Combined Health Information Database A comprehensive source of information on clinical guidelines written for professionals is the Combined Health Information Database. You will need to limit your search to “Brochure/Pamphlet,” “Fact Sheet,” or “Information Package” and reflex sympathetic dystrophy syndrome using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For the publication date, select “All Years,” select your preferred language, and the format option “Fact Sheet.” By making these selections and typing “reflex sympathetic dystrophy syndrome” (or synonyms) into

78 Reflex Sympathetic Dystrophy Syndrome

the “For these words:” box above, you will only receive results on fact sheets dealing with reflex sympathetic dystrophy syndrome.

The NLM Gateway23 The NLM (National Library of Medicine) Gateway is a Web-based system that lets users search simultaneously in multiple retrieval systems at the U.S. National Library of Medicine (NLM). It allows users of NLM services to initiate searches from one Web interface, providing “one-stop searching” for many of NLM’s information resources or databases.24 One target audience for the Gateway is the Internet user who is new to NLM’s online resources and does not know what information is available or how best to search for it. This audience may include physicians and other healthcare providers, researchers, librarians, students, and, increasingly, patients, their families, and the public.25 To use the NLM Gateway, simply go to the search site at http://gateway.nlm.nih.gov/gw/Cmd. Type “reflex sympathetic dystrophy syndrome” (or synonyms) into the search box and click “Search.” The results will be presented in a tabular form, indicating the number of references in each database category. Results Summary Category Items Found Journal Articles 348687 Books / Periodicals / Audio Visual 2576 Consumer Health 294 Meeting Abstracts 2575 Other Collections 87 Total 354219

Adapted from NLM: http://gateway.nlm.nih.gov/gw/Cmd?Overview.x. The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH). 25 Other users may find the Gateway useful for an overall search of NLM’s information resources. Some searchers may locate what they need immediately, while others will utilize the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases. 23 24

Physician Guidelines and Databases 79

HSTAT26 HSTAT is a free, Web-based resource that provides access to full-text documents used in healthcare decision-making.27 HSTAT’s audience includes healthcare providers, health service researchers, policy makers, insurance companies, consumers, and the information professionals who serve these groups. HSTAT provides access to a wide variety of publications, including clinical practice guidelines, quick-reference guides for clinicians, consumer health brochures, evidence reports and technology assessments from the Agency for Healthcare Research and Quality (AHRQ), as well as AHRQ’s Put Prevention Into Practice.28 Simply search by “reflex sympathetic dystrophy syndrome” (or synonyms) at the following Web site: http://text.nlm.nih.gov. Coffee Break: Tutorials for Biologists29 Some patients may wish to have access to a general healthcare site that takes a scientific view of the news and covers recent breakthroughs in biology that may one day assist physicians in developing treatments. To this end, we recommend “Coffee Break,” a collection of short reports on recent biological discoveries. Each report incorporates interactive tutorials that demonstrate how bioinformatics tools are used as a part of the research process. Currently, all Coffee Breaks are written by NCBI staff.30 Each report is about 400 words and is usually based on a discovery reported in one or more articles from recently published, peer-reviewed literature.31 This site has new Adapted from HSTAT: http://www.nlm.nih.gov/pubs/factsheets/hstat.html. The HSTAT URL is http://hstat.nlm.nih.gov/. 28 Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment (SAMHSA/CSAT) Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force’s Guide to Clinical Preventive Services; the independent, nonfederal Task Force on Community Services Guide to Community Preventive Services; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations. 29 Adapted from http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html. 30 The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story. 31 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext 26 27

80 Reflex Sympathetic Dystrophy Syndrome

articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. You can access the Coffee Break Web site at http://www.ncbi.nlm.nih.gov/Coffeebreak/.

Other Commercial Databases In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a few examples that may interest you: ·

CliniWeb International: Index and table of contents to selected clinical information on the Internet; see http://www.ohsu.edu/cliniweb/.

·

Image Engine: Multimedia electronic medical record system that integrates a wide range of digitized clinical images with textual data stored in the University of Pittsburgh Medical Center’s MARS electronic medical record system; see the following Web site: http://www.cml.upmc.edu/cml/imageengine/imageEngine.html.

·

Medical World Search: Searches full text from thousands of selected medical sites on the Internet; see http://www.mwsearch.com/.

·

MedWeaver: Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical literature, and to explore relevant Web sites; see http://www.med.virginia.edu/~wmd4n/medweaver.html.

·

Metaphrase: Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language generally used by caregivers into terms from formal, controlled vocabularies; see the following Web site: http://www.lexical.com/Metaphrase.html.

Specialized References The following books are specialized references written for professionals interested in reflex sympathetic dystrophy syndrome (sorted alphabetically by title, hyperlinks provide rankings, information, and reviews at Amazon.com): · The Behavioral Neurology of White Matter by Christopher M. Filley; Paperback - 279 pages; 1st edition (September 15, 2001), Oxford University links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process.

Physician Guidelines and Databases 81

Press; ISBN: 019513561X; http://www.amazon.com/exec/obidos/ASIN/019513561X/icongroupintern a · The Cerebellum and Its Disorders by Mario-Ubaldo Manto, Massimo Pandolfo; Hardcover - 1st edition (January 2002), Cambridge University Press; ISBN: 0521771560; http://www.amazon.com/exec/obidos/ASIN/0521771560/icongroupinterna · Clinical Neurology by David A. Greenberg, et al; Paperback - 390 pages; 5th edition (February 9, 2002), Appleton & Lange; ISBN: 0071375430; http://www.amazon.com/exec/obidos/ASIN/0071375430/icongroupinterna · Clinical Neurology for Psychiatrists by David M. Kaufman; Hardcover 670 pages, 5th edition (January 15, 2001), W. B. Saunders Co.; ISBN: 0721689957; http://www.amazon.com/exec/obidos/ASIN/0721689957/icongroupinterna · Comprehensive Neurology by Roger N. Rosenberg (Editor), David E. Pleasure (Editor); 1280 pages, 2nd edition (April 1998), Wiley-Liss; ISBN: 0471169587; http://www.amazon.com/exec/obidos/ASIN/0471169587/icongroupinterna · Emergent and Urgent Neurology by William J. Weiner (Editor), Lisa M. Shulman (Editor); Hardcover - 571 pages; 2nd edition (January 15, 1999), Lippincott, Williams & Wilkins Publishers; ISBN: 0397518579; http://www.amazon.com/exec/obidos/ASIN/0397518579/icongroupinterna · Neurology in Clinical Practice: Volume I: Principles of Diagnosis and Management, Volume II: The Neurological Disorders (2-Volume Set, Includes a 12-Month Subscription to the Online Edition) by W. G. Bradley, et al; Hardcover - 2413 pages, 3rd edition, Vol 1-2 (January 15, 2000), Butterworth-Heinemann; ISBN: 0750699736; http://www.amazon.com/exec/obidos/ASIN/0750699736/icongroupinterna · Neuroscience: Exploring the Brain by Mark F. Bear, et al; Hardcover - 855 pages, 2nd edition (January 15, 2001), Lippincott, Williams & Wilkins Publishers; ISBN: 0683305964; http://www.amazon.com/exec/obidos/ASIN/0683305964/icongroupinterna · Office Practice of Neurology by Martain A. Samuels, Steven F. Feske; Hardcover, Churchill Livingstone; ISBN: 0443065578; http://www.amazon.com/exec/obidos/ASIN/0443065578/icongroupinterna · Patient-Based Approaches to Cognitive Neuroscience by Martha J. Farah (Editor), Todd E. Feinberg (Editor); Paperback - 425 pages (April 3, 2000), MIT Press; ISBN: 0262561239; http://www.amazon.com/exec/obidos/ASIN/0262561239/icongroupinterna

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· Principles of Neural Science by Eric R. Kandel (Editor), et al; Hardcover 1414 pages, 4th edition (January 5, 2000), McGraw-Hill Professional Publishing; ISBN: 0838577016; http://www.amazon.com/exec/obidos/ASIN/0838577016/icongroupinterna · Review Manual for Neurology in Clinical Practice by Karl E. Misulis, et al; Paperback, Butterworth-Heinemann Medical; ISBN: 0750671920; http://www.amazon.com/exec/obidos/ASIN/0750671920/icongroupinterna

Vocabulary Builder Cerebellum: Part of the metencephalon that lies in the posterior cranial fossa behind the brain stem. It is concerned with the coordination of movement. [NIH]

83

PART III. APPENDICES

ABOUT PART III Part III is a collection of appendices on general medical topics which may be of interest to patients with reflex sympathetic dystrophy syndrome and related conditions.

Researching Your Medications 85

APPENDIX A. RESEARCHING YOUR MEDICATIONS Overview There are a number of sources available on new or existing medications which could be prescribed to patients with reflex sympathetic dystrophy syndrome. While a number of hard copy or CD-Rom resources are available to patients and physicians for research purposes, a more flexible method is to use Internet-based databases. In this chapter, we will begin with a general overview of medications. We will then proceed to outline official recommendations on how you should view your medications. You may also want to research medications that you are currently taking for other conditions as they may interact with medications for reflex sympathetic dystrophy syndrome. Research can give you information on the side effects, interactions, and limitations of prescription drugs used in the treatment of reflex sympathetic dystrophy syndrome. Broadly speaking, there are two sources of information on approved medications: public sources and private sources. We will emphasize free-to-use public sources.

86 Reflex Sympathetic Dystrophy Syndrome

Your Medications: The Basics32 The Agency for Health Care Research and Quality has published extremely useful guidelines on how you can best participate in the medication aspects of reflex sympathetic dystrophy syndrome. Taking medicines is not always as simple as swallowing a pill. It can involve many steps and decisions each day. The AHCRQ recommends that patients with reflex sympathetic dystrophy syndrome take part in treatment decisions. Do not be afraid to ask questions and talk about your concerns. By taking a moment to ask questions early, you may avoid problems later. Here are some points to cover each time a new medicine is prescribed: ·

Ask about all parts of your treatment, including diet changes, exercise, and medicines.

·

Ask about the risks and benefits of each medicine or other treatment you might receive.

·

Ask how often you or your doctor will check for side effects from a given medication.

Do not hesitate to ask what is important to you about your medicines. You may want a medicine with the fewest side effects, or the fewest doses to take each day. You may care most about cost, or how the medicine might affect how you live or work. Or, you may want the medicine your doctor believes will work the best. Telling your doctor will help him or her select the best treatment for you. Do not be afraid to “bother” your doctor with your concerns and questions about medications for reflex sympathetic dystrophy syndrome. You can also talk to a nurse or a pharmacist. They can help you better understand your treatment plan. Feel free to bring a friend or family member with you when you visit your doctor. Talking over your options with someone you trust can help you make better choices, especially if you are not feeling well. Specifically, ask your doctor the following: ·

The name of the medicine and what it is supposed to do.

·

How and when to take the medicine, how much to take, and for how long.

·

What food, drinks, other medicines, or activities you should avoid while taking the medicine.

·

What side effects the medicine may have, and what to do if they occur.

32

This section is adapted from AHCRQ: http://www.ahcpr.gov/consumer/ncpiebro.htm.

Researching Your Medications 87

·

If you can get a refill, and how often.

·

About any terms or directions you do not understand.

·

What to do if you miss a dose.

·

If there is written information you can take home (most pharmacies have information sheets on your prescription medicines; some even offer large-print or Spanish versions).

Do not forget to tell your doctor about all the medicines you are currently taking (not just those for reflex sympathetic dystrophy syndrome). This includes prescription medicines and the medicines that you buy over the counter. Then your doctor can avoid giving you a new medicine that may not work well with the medications you take now. When talking to your doctor, you may wish to prepare a list of medicines you currently take, the reason you take them, and how you take them. Be sure to include the following information for each: ·

Name of medicine

·

Reason taken

·

Dosage

·

Time(s) of day

Also include any over-the-counter medicines, such as: ·

Laxatives

·

Diet pills

·

Vitamins

·

Cold medicine

·

Aspirin or other pain, headache, or fever medicine

·

Cough medicine

·

Allergy relief medicine

·

Antacids

·

Sleeping pills

·

Others (include names)

88 Reflex Sympathetic Dystrophy Syndrome

Learning More about Your Medications Because of historical investments by various organizations and the emergence of the Internet, it has become rather simple to learn about the medications your doctor has recommended for reflex sympathetic dystrophy syndrome. One such source is the United States Pharmacopeia. In 1820, eleven physicians met in Washington, D.C. to establish the first compendium of standard drugs for the United States. They called this compendium the “U.S. Pharmacopeia (USP).” Today, the USP is a non-profit organization consisting of 800 volunteer scientists, eleven elected officials, and 400 representatives of state associations and colleges of medicine and pharmacy. The USP is located in Rockville, Maryland, and its home page is located at www.usp.org. The USP currently provides standards for over 3,700 medications. The resulting USP DIÒ Advice for the PatientÒ can be accessed through the National Library of Medicine of the National Institutes of Health. The database is partially derived from lists of federally approved medications in the Food and Drug Administration’s (FDA) Drug Approvals database.33 While the FDA database is rather large and difficult to navigate, the Phamacopeia is both user-friendly and free to use. It covers more than 9,000 prescription and over-the-counter medications. To access this database, simply type the following hyperlink into your Web browser: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication (brand names, category, description, preparation, proper use, precautions, side effects, etc.), simply follow the hyperlinks indicated within the United States Pharmacopoeia (USP). It is important to read the disclaimer by the USP (http://www.nlm.nih.gov/medlineplus/drugdisclaimer.html) before using the information provided.

Commercial Databases In addition to the medications listed in the USP above, a number of commercial sites are available by subscription to physicians and their institutions. You may be able to access these sources from your local medical library or your doctor’s office.

Though cumbersome, the FDA database can be freely browsed at the following site: www.fda.gov/cder/da/da.htm.

33

Researching Your Medications 89

Reuters Health Drug Database The Reuters Health Drug Database can be searched by keyword at the hyperlink: http://www.reutershealth.com/frame2/drug.html.34

Mosby’s GenRx Mosby’s GenRx database (also available on CD-Rom and book format) covers 45,000 drug products including generics and international brands. It provides prescribing information, drug interactions, and patient information. Information can be obtained at the following hyperlink: http://www.genrx.com/Mosby/PhyGenRx/group.html.

Physicians Desk Reference The Physicians Desk Reference database (also available in CD-Rom and book format) is a full-text drug database. The database is searchable by brand name, generic name or by indication. It features multiple drug interactions reports. Information can be obtained at the following hyperlink: http://physician.pdr.net/physician/templates/en/acl/psuser_t.htm.

Other Web Sites A number of additional Web sites discuss drug information. As an example, you may like to look at www.drugs.com which reproduces the information in the Pharmacopeia as well as commercial information. You may also want to consider the Web site of the Medical Letter, Inc. which allows users to download articles on various drugs and therapeutics for a nominal fee: http://www.medletter.com/.

Contraindications and Interactions (Hidden Dangers) Some of the medications mentioned in the previous discussions can be problematic for patients with reflex sympathetic dystrophy syndrome--not because they are used in the treatment process, but because of contraindications, or side effects. Medications with contraindications are those that could react with drugs used to treat reflex sympathetic dystrophy 34

Adapted from A to Z Drug Facts by Facts and Comparisons.

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syndrome or potentially create deleterious side effects in patients with reflex sympathetic dystrophy syndrome. You should ask your physician about any contraindications, especially as these might apply to other medications that you may be taking for common ailments. Drug-drug interactions occur when two or more drugs react with each other. This drug-drug interaction may cause you to experience an unexpected side effect. Drug interactions may make your medications less effective, cause unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to you. Be sure to read the label every time you use a nonprescription or prescription drug, and take the time to learn about drug interactions. These precautions may be critical to your health. You can reduce the risk of potentially harmful drug interactions and side effects with a little bit of knowledge and common sense. Drug labels contain important information about ingredients, uses, warnings, and directions which you should take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes available. This is why it’s especially important to read the label every time you use a medication. When your doctor prescribes a new drug, discuss all over-thecounter and prescription medications, dietary supplements, vitamins, botanicals, minerals and herbals you take as well as the foods you eat. Ask your pharmacist for the package insert for each prescription drug you take. The package insert provides more information about potential drug interactions.

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A Final Warning At some point, you may hear of alternative medications from friends, relatives, or in the news media. Advertisements may suggest that certain alternative drugs can produce positive results for patients with reflex sympathetic dystrophy syndrome. Exercise caution--some of these drugs may have fraudulent claims, and others may actually hurt you. The Food and Drug Administration (FDA) is the official U.S. agency charged with discovering which medications are likely to improve the health of patients with reflex sympathetic dystrophy syndrome. The FDA warns patients to watch out for35: ·

Secret formulas (real scientists share what they know)

·

Amazing breakthroughs or miracle cures (real breakthroughs don’t happen very often; when they do, real scientists do not call them amazing or miracles)

·

Quick, painless, or guaranteed cures

·

If it sounds too good to be true, it probably isn’t true.

If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the blue pages of the phone book. You can also contact the FDA through its toll-free number, 1888-INFO-FDA (1-888-463-6332), or on the World Wide Web at www.fda.gov.

General References In addition to the resources provided earlier in this chapter, the following general references describe medications (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): · Current Therapy in Neurologic Disease by Richard T. Johnson, et al; Hardcover - 457 pages, 6th edition (January 15, 2002), Mosby-Year Book; ISBN: 0323014720; http://www.amazon.com/exec/obidos/ASIN/0323014720/icongroupinterna · Emerging Pharmacological Tools in Clinical Neurology by MedPanel Inc. (Author); Digital - 66 pages, MarketResearch.com; ISBN: B00005RBN8; http://www.amazon.com/exec/obidos/ASIN/B00005RBN8/icongroupinter na 35

This section has been adapted from http://www.fda.gov/opacom/lowlit/medfraud.html.

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· Goodman & Gilman’s The Pharmacological Basis of Therapeutics by Joel G. Hardman (Editor), Lee E. Limbird; Hardcover - 1825 pages, 10th edition (August 13, 2001), McGraw-Hill Professional Publishing; ISBN: 0071354697; http://www.amazon.com/exec/obidos/ASIN/0071354697/icongroupinterna · Neurology and General Medicine by Michael J. Aminoff (Editor), Hardcover - 992 pages, 3rd edition (March 15, 2001), Churchill Livingstone; ISBN: 0443065713; http://www.amazon.com/exec/obidos/ASIN/0443065713/icongroupinterna · Neurology and Medicine by Hughes Perkins; Hardcover - 415 pages, 1st edition (December 15, 1999), B. M. J. Books; ISBN: 0727912240; http://www.amazon.com/exec/obidos/ASIN/0727912240/icongroupinterna · Pharmacological Management of Neurological and Psychiatric Disorders by S. J. Enna (Editor), et al; Hardcover - 736 pages, 1st edition, McGrawHill Professional Publishing; ISBN: 0070217645; http://www.amazon.com/exec/obidos/ASIN/0070217645/icongroupinterna

Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Psychiatric: Pertaining to or within the purview of psychiatry. [EU]

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APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE Overview Complementary and alternative medicine (CAM) is one of the most contentious aspects of modern medical practice. You may have heard of these treatments on the radio or on television. Maybe you have seen articles written about these treatments in magazines, newspapers, or books. Perhaps your friends or doctor have mentioned alternatives. In this chapter, we will begin by giving you a broad perspective on complementary and alternative therapies. Next, we will introduce you to official information sources on CAM relating to reflex sympathetic dystrophy syndrome. Finally, at the conclusion of this chapter, we will provide a list of readings on reflex sympathetic dystrophy syndrome from various authors. We will begin, however, with the National Center for Complementary and Alternative Medicine’s (NCCAM) overview of complementary and alternative medicine.

What Is CAM?36 Complementary and alternative medicine (CAM) covers a broad range of healing philosophies, approaches, and therapies. Generally, it is defined as those treatments and healthcare practices which are not taught in medical schools, used in hospitals, or reimbursed by medical insurance companies. Many CAM therapies are termed “holistic,” which generally means that the healthcare practitioner considers the whole person, including physical, mental, emotional, and spiritual health. Some of these therapies are also 36

Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/faq/index.html#what-is.

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known as “preventive,” which means that the practitioner educates and treats the person to prevent health problems from arising, rather than treating symptoms after problems have occurred. People use CAM treatments and therapies in a variety of ways. Therapies are used alone (often referred to as alternative), in combination with other alternative therapies, or in addition to conventional treatment (sometimes referred to as complementary). Complementary and alternative medicine, or “integrative medicine,” includes a broad range of healing philosophies, approaches, and therapies. Some approaches are consistent with physiological principles of Western medicine, while others constitute healing systems with non-Western origins. While some therapies are far outside the realm of accepted Western medical theory and practice, others are becoming established in mainstream medicine. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. Some commonly used methods of complementary or alternative therapy include mind/body control interventions such as visualization and relaxation, manual healing including acupressure and massage, homeopathy, vitamins or herbal products, and acupuncture.

What Are the Domains of Alternative Medicine?37 The list of CAM practices changes continually. The reason being is that these new practices and therapies are often proved to be safe and effective, and therefore become generally accepted as “mainstream” healthcare practices. Today, CAM practices may be grouped within five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologicallybased treatments, (4) manipulative and body-based methods, and (5) energy therapies. The individual systems and treatments comprising these categories are too numerous to list in this sourcebook. Thus, only limited examples are provided within each.

Alternative Medical Systems Alternative medical systems involve complete systems of theory and practice that have evolved independent of, and often prior to, conventional biomedical approaches. Many are traditional systems of medicine that are 37

Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/classify/index.html.

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practiced by individual cultures throughout the world, including a number of venerable Asian approaches. Traditional oriental medicine emphasizes the balance or disturbances of qi (pronounced chi) or vital energy in health and disease, respectively. Traditional oriental medicine consists of a group of techniques and methods including acupuncture, herbal medicine, oriental massage, and qi gong (a form of energy therapy). Acupuncture involves stimulating specific anatomic points in the body for therapeutic purposes, usually by puncturing the skin with a thin needle. Ayurveda is India’s traditional system of medicine. Ayurvedic medicine (meaning “science of life”) is a comprehensive system of medicine that places equal emphasis on body, mind, and spirit. Ayurveda strives to restore the innate harmony of the individual. Some of the primary Ayurvedic treatments include diet, exercise, meditation, herbs, massage, exposure to sunlight, and controlled breathing. Other traditional healing systems have been developed by the world’s indigenous populations. These populations include Native American, Aboriginal, African, Middle Eastern, Tibetan, and Central and South American cultures. Homeopathy and naturopathy are also examples of complete alternative medicine systems. Homeopathic medicine is an unconventional Western system that is based on the principle that “like cures like,” i.e., that the same substance that in large doses produces the symptoms of an illness, in very minute doses cures it. Homeopathic health practitioners believe that the more dilute the remedy, the greater its potency. Therefore, they use small doses of specially prepared plant extracts and minerals to stimulate the body’s defense mechanisms and healing processes in order to treat illness. Naturopathic medicine is based on the theory that disease is a manifestation of alterations in the processes by which the body naturally heals itself and emphasizes health restoration rather than disease treatment. Naturopathic physicians employ an array of healing practices, including the following: diet and clinical nutrition, homeopathy, acupuncture, herbal medicine, hydrotherapy (the use of water in a range of temperatures and methods of applications), spinal and soft-tissue manipulation, physical therapies (such as those involving electrical currents, ultrasound, and light), therapeutic counseling, and pharmacology.

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Mind-Body Interventions Mind-body interventions employ a variety of techniques designed to facilitate the mind’s capacity to affect bodily function and symptoms. Only a select group of mind-body interventions having well-documented theoretical foundations are considered CAM. For example, patient education and cognitive-behavioral approaches are now considered “mainstream.” On the other hand, complementary and alternative medicine includes meditation, certain uses of hypnosis, dance, music, and art therapy, as well as prayer and mental healing.

Biological-Based Therapies This category of CAM includes natural and biological-based practices, interventions, and products, many of which overlap with conventional medicine’s use of dietary supplements. This category includes herbal, special dietary, orthomolecular, and individual biological therapies. Herbal therapy employs an individual herb or a mixture of herbs for healing purposes. An herb is a plant or plant part that produces and contains chemical substances that act upon the body. Special diet therapies, such as those proposed by Drs. Atkins, Ornish, Pritikin, and Weil, are believed to prevent and/or control illness as well as promote health. Orthomolecular therapies aim to treat disease with varying concentrations of chemicals such as magnesium, melatonin, and mega-doses of vitamins. Biological therapies include, for example, the use of laetrile and shark cartilage to treat cancer and the use of bee pollen to treat autoimmune and inflammatory diseases.

Manipulative and Body-Based Methods This category includes methods that are based on manipulation and/or movement of the body. For example, chiropractors focus on the relationship between structure and function, primarily pertaining to the spine, and how that relationship affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool. In contrast, osteopaths place particular emphasis on the musculoskeletal system and practice osteopathic manipulation. Osteopaths believe that all of the body’s systems work together and that disturbances in one system may have an impact upon function elsewhere in the body. Massage therapists manipulate the soft tissues of the body to normalize those tissues.

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Energy Therapies Energy therapies focus on energy fields originating within the body (biofields) or those from other sources (electromagnetic fields). Biofield therapies are intended to affect energy fields (the existence of which is not yet experimentally proven) that surround and penetrate the human body. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in or through these fields. Examples include Qi gong, Reiki and Therapeutic Touch. Qi gong is a component of traditional oriental medicine that combines movement, meditation, and regulation of breathing to enhance the flow of vital energy (qi) in the body, improve blood circulation, and enhance immune function. Reiki, the Japanese word representing Universal Life Energy, is based on the belief that, by channeling spiritual energy through the practitioner, the spirit is healed and, in turn, heals the physical body. Therapeutic Touch is derived from the ancient technique of “laying-on of hands.” It is based on the premises that the therapist’s healing force affects the patient’s recovery and that healing is promoted when the body’s energies are in balance. By passing their hands over the patient, these healers identify energy imbalances. Bioelectromagnetic-based therapies involve the unconventional use of electromagnetic fields to treat illnesses or manage pain. These therapies are often used to treat asthma, cancer, and migraine headaches. Types of electromagnetic fields which are manipulated in these therapies include pulsed fields, magnetic fields, and alternating current or direct current fields.

Can Alternatives Affect My Treatment? A critical issue in pursuing complementary alternatives mentioned thus far is the risk that these might have undesirable interactions with your medical treatment. It becomes all the more important to speak with your doctor who can offer advice on the use of alternatives. Official sources confirm this view. Though written for women, we find that the National Women’s Health Information Center’s advice on pursuing alternative medicine is appropriate for patients of both genders and all ages.38

38

Adapted from http://www.4woman.gov/faq/alternative.htm.

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Is It Okay to Want Both Traditional and Alternative or Complementary Medicine? Should you wish to explore non-traditional types of treatment, be sure to discuss all issues concerning treatments and therapies with your healthcare provider, whether a physician or practitioner of complementary and alternative medicine. Competent healthcare management requires knowledge of both conventional and alternative therapies you are taking for the practitioner to have a complete picture of your treatment plan. The decision to use complementary and alternative treatments is an important one. Consider before selecting an alternative therapy, the safety and effectiveness of the therapy or treatment, the expertise and qualifications of the healthcare practitioner, and the quality of delivery. These topics should be considered when selecting any practitioner or therapy.

Finding CAM References on Reflex Sympathetic Dystrophy Syndrome Having read the previous discussion, you may be wondering which complementary or alternative treatments might be appropriate for reflex sympathetic dystrophy syndrome. For the remainder of this chapter, we will direct you to a number of official sources which can assist you in researching studies and publications. Some of these articles are rather technical, so some patience may be required.

National Center for Complementary and Alternative Medicine The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (http://nccam.nih.gov) has created a link to the National Library of Medicine’s databases to allow patients to search for articles that specifically relate to reflex sympathetic dystrophy syndrome and complementary medicine. To search the database, go to www.nlm.nih.gov/nccam/camonpubmed.html. Select “CAM on PubMed.” Enter “reflex sympathetic dystrophy syndrome” (or synonyms) into the search box. Click “Go.” The following references provide information on particular aspects of complementary and alternative medicine (CAM) that are related to reflex sympathetic dystrophy syndrome: ·

A hypothesis on the physiological basis for causalgia and related pains. Author(s): Roberts WJ.

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Source: Pain. 1986 March; 24(3): 297-311. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3515292&dopt=Abstract ·

Acupuncture in the treatment of posttraumatic pain syndrome. Author(s): Korpan MI, Dezu Y, Schneider B, Leitha T, Fialka-Moser V. Source: Acta Orthop Belg. 1999 June; 65(2): 197-201. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10427802&dopt=Abstract

·

Algodystrophy: treatment. Author(s): Bossi L, Conoscente F, Pellerin I, Foresio R. Source: Funct Neurol. 1989 April-June; 4(2): 157-60. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2661344&dopt=Abstract

·

Autogenic training as an effective treatment for reflex neurovascular dystrophy: a case report. Author(s): Kawano M, Matsuoka M, Kurokawa T, Tomita S, Mizuno Y, Ueda K. Source: Acta Paediatr Jpn. 1989 August; 31(4): 500-3. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2514577&dopt=Abstract

·

Calcitonin and reflex sympathetic dystrophy syndrome. Author(s): Gobelet C, Meier JL, Schaffner W, Bischof-Delaloye A, Gerster JC, Burckhardt P. Source: Clinical Rheumatology. 1986 September; 5(3): 382-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3536262&dopt=Abstract

·

Effects of qigong on late-stage complex regional pain syndrome. Author(s): Wu WH, Bandilla E, Ciccone DS, Yang J, Cheng SC, Carner N, Wu Y, Shen R. Source: Alternative Therapies in Health and Medicine. 1999 January; 5(1): 45-54. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9893315&dopt=Abstract

·

Electroacupuncture in the treatment of post-traumatic sympathetic dystrophy (Sudeck's atrophy). Author(s): Chan CS, Chow SP.

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Source: British Journal of Anaesthesia. 1981 August; 53(8): 899-902. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6168275&dopt=Abstract ·

Historical perspective of causalgia. Management of sympathetically maintained pain. Author(s): Headley B. Source: Physical Therapy. 1987 September; 67(9): 1370-4. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3498173&dopt=Abstract

·

Hyperbaric oxygen and the reflex sympathetic dystrophy syndrome: a case report. Author(s): Peach G. Source: Undersea Hyperb Med. 1995 December; 22(4): 407-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8574129&dopt=Abstract

·

Management of shoulder-hand syndrome. Author(s): Johnson EW, Pannozzo AN. Source: Jama : the Journal of the American Medical Association. 1966 January 10; 195(2): 108-10. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4179757&dopt=Abstract

·

Neuroaugmentation in the treatment of complex regional pain syndrome of the upper extremity. Author(s): Calvillo O, Racz G, Didie J, Smith K. Source: Acta Orthop Belg. 1998 March; 64(1): 57-63. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9586252&dopt=Abstract

·

New thoughts on reflex sympathetic dystrophy syndrome. Author(s): Ray AL, Hoover M. Source: J Neurosci Nurs. 1992 April; 24(2): 64. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1602173&dopt=Abstract

·

Reflex sympathetic dystrophy syndrome in children. Author(s): Ashwal S, Tomasi L, Neumann M, Schneider S.

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Source: Pediatric Neurology. 1988 January-February; 4(1): 38-42. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3266073&dopt=Abstract ·

Reflex sympathetic dystrophy syndrome. Author(s): Carlson T, Jacobs AM. Source: J Foot Surg. 1986 March-April; 25(2): 149-53. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3519741&dopt=Abstract

·

Reflex sympathetic dystrophy syndrome: a retrospective pain study. Author(s): Greipp ME. Source: Journal of Advanced Nursing. 1990 December; 15(12): 1452-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2283458&dopt=Abstract

·

Reversal of a Sudeck's atrophy by the adjunctive use of transcutaneous electrical nerve stimulation. A case report. Author(s): Bodenheim R, Bennett JH. Source: Physical Therapy. 1983 August; 63(8): 1287-8. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6192454&dopt=Abstract

·

Short- and long-term outcomes of children with complex regional pain syndrome type I treated with exercise therapy. Author(s): Sherry DD, Wallace CA, Kelley C, Kidder M, Sapp L. Source: The Clinical Journal of Pain. 1999 September; 15(3): 218-23. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10524475&dopt=Abstract

·

Surgical sympathectomy for reflex sympathetic dystrophy syndromes. Author(s): Bandyk DF, Johnson BL, Kirkpatrick AF, Novotney ML, Back MR, Schmacht DC. Source: Journal of Vascular Surgery : Official Publication, the Society for Vascular Surgery [and] International Society for Cardiovascular Surgery, North American Chapter. 2002 February; 35(2): 269-77. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11854724&dopt=Abstract

·

The treatment of reflex sympathetic dystrophy syndrome. Author(s): Schutzer SF, Gossling HR.

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Source: The Journal of Bone and Joint Surgery. American Volume. 1984 April; 66(4): 625-9. Review. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6368562&dopt=Abstract ·

The use of temperature biofeedback in the treatment of chronic pain due to causalgia. Author(s): Blanchard EB. Source: Biofeedback Self Regul. 1979 June; 4(2): 183-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=476193&dopt=Abstract

·

Thermal self-regulation for pain control in reflex sympathetic dystrophy syndrome. Author(s): Grunert BK, Devine CA, Sanger JR, Matloub HS, Green D. Source: The Journal of Hand Surgery. 1990 July; 15(4): 615-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2199569&dopt=Abstract

·

Thoracic spine dysfunction in upper extremity complex regional pain syndrome type I. Author(s): Menck JY, Requejo SM, Kulig K. Source: The Journal of Orthopaedic and Sports Physical Therapy. 2000 July; 30(7): 401-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10907896&dopt=Abstract

Additional Web Resources A number of additional Web sites offer encyclopedic information covering CAM and related topics. The following is a representative sample: ·

Alternative Medicine Foundation, Inc.: http://www.herbmed.org/

·

AOL: http://search.aol.com/cat.adp?id=169&layer=&from=subcats

·

Chinese Medicine: http://www.newcenturynutrition.com/

·

drkoop.comÒ: http://www.drkoop.com/InteractiveMedicine/IndexC.html

·

Family Village: http://www.familyvillage.wisc.edu/med_altn.htm

·

Google: http://directory.google.com/Top/Health/Alternative/

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·

Healthnotes: http://www.thedacare.org/healthnotes/

·

Open Directory Project: http://dmoz.org/Health/Alternative/

·

TPN.com: http://www.tnp.com/

·

Yahoo.com: http://dir.yahoo.com/Health/Alternative_Medicine/

·

WebMDÒHealth: http://my.webmd.com/drugs_and_herbs

·

WellNet: http://www.wellnet.ca/herbsa-c.htm

·

WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html

General References A good place to find general background information on CAM is the National Library of Medicine. It has prepared within the MEDLINEplus system an information topic page dedicated to complementary and alternative medicine. To access this page, go to the MEDLINEplus site at: www.nlm.nih.gov/medlineplus/alternativemedicine.html. This Web site provides a general overview of various topics and can lead to a number of general sources. The following additional references describe, in broad terms, alternative and complementary medicine (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Alternative and Complementary Treatment in Neurologic Illness by Michael I. Weintraub (Editor); Paperback - 288 pages (March 23, 2001), Churchill Livingstone; ISBN: 0443065586; http://www.amazon.com/exec/obidos/ASIN/0443065586/icongroupinterna · Radical Healing: Integrating the World’s Great Therapeutic Traditions to Create a New Transformative Medicine by Rudolph Ballentine, M.D., Linda Funk (Illustrator); Paperback - 612 pages; Reprint edition (March 14, 2000), Three Rivers Press; ISBN: 0609804847; http://www.amazon.com/exec/obidos/ASIN/0609804847/icongroupinterna · The Review of Natural Products by Facts and Comparisons (Editor); CdRom edition (January 2002), Facts & Comparisons; ISBN: 1574391453; http://www.amazon.com/exec/obidos/ASIN/1574391453/icongroupinterna

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For additional information on complementary and alternative medicine, ask your doctor or write to: National Institutes of Health National Center for Complementary and Alternative Medicine Clearinghouse P. O. Box 8218 Silver Spring, MD 20907-8218

The following is a specific Web site relting to Reflex Sympathetic Dystrophy Syndrome; please note that the particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation: ·

Food and Diet Pain Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Pain.htm

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APPENDIX C. RESEARCHING NUTRITION Overview Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to patients’ health and well-being. Since then, they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements to patients with reflex sympathetic dystrophy syndrome. Any dietary recommendation is based on a patient’s age, body mass, gender, lifestyle, eating habits, food preferences, and health condition. It is therefore likely that different patients with reflex sympathetic dystrophy syndrome may be given different recommendations. Some recommendations may be directly related to reflex sympathetic dystrophy syndrome, while others may be more related to the patient’s general health. These recommendations, themselves, may differ from what official sources recommend for the average person. In this chapter we will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of reflex sympathetic dystrophy syndrome. We will then show you how to find studies dedicated specifically to nutrition and reflex sympathetic dystrophy syndrome.

Food and Nutrition: General Principles What Are Essential Foods? Food is generally viewed by official sources as consisting of six basic elements: (1) fluids, (2) carbohydrates, (3) protein, (4) fats, (5) vitamins, and

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(6) minerals. Consuming a combination of these elements is considered to be a healthy diet: ·

Fluids are essential to human life as 80-percent of the body is composed of water. Water is lost via urination, sweating, diarrhea, vomiting, diuretics (drugs that increase urination), caffeine, and physical exertion.

·

Carbohydrates are the main source for human energy (thermoregulation) and the bulk of typical diets. They are mostly classified as being either simple or complex. Simple carbohydrates include sugars which are often consumed in the form of cookies, candies, or cakes. Complex carbohydrates consist of starches and dietary fibers. Starches are consumed in the form of pastas, breads, potatoes, rice, and other foods. Soluble fibers can be eaten in the form of certain vegetables, fruits, oats, and legumes. Insoluble fibers include brown rice, whole grains, certain fruits, wheat bran and legumes.

·

Proteins are eaten to build and repair human tissues. Some foods that are high in protein are also high in fat and calories. Food sources for protein include nuts, meat, fish, cheese, and other dairy products.

·

Fats are consumed for both energy and the absorption of certain vitamins. There are many types of fats, with many general publications recommending the intake of unsaturated fats or those low in cholesterol.

Vitamins and minerals are fundamental to human health, growth, and, in some cases, disease prevention. Most are consumed in your diet (exceptions being vitamins K and D which are produced by intestinal bacteria and sunlight on the skin, respectively). Each vitamin and mineral plays a different role in health. The following outlines essential vitamins: ·

Vitamin A is important to the health of your eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe.

·

Vitamin B1, also known as thiamine, is important for your nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains.

·

Vitamin B2, also known as riboflavin, is important for your nervous system and muscles, but is also involved in the release of proteins from nutrients; food sources for riboflavin include dairy products, leafy vegetables, meat, and eggs.

·

Vitamin B3, also known as niacin, is important for healthy skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains

Researching Nutrition 107

·

Vitamin B6, also known as pyridoxine, is important for the regulation of cells in the nervous system and is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish.

·

Vitamin B12 is vital for a healthy nervous system and for the growth of red blood cells in bone marrow; food sources for vitamin B12 include yeast, milk, fish, eggs, and meat.

·

Vitamin C allows the body’s immune system to fight various diseases, strengthens body tissue, and improves the body’s use of iron; food sources for vitamin C include a wide variety of fruits and vegetables.

·

Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products.

·

Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish.

·

Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables.

·

Folic Acid maintains healthy cells and blood and, when taken by a pregnant woman, can prevent her fetus from developing neural tube defects; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains.

It should be noted that one can overdose on certain vitamins which become toxic if consumed in excess (e.g. vitamin A, D, E and K). Like vitamins, minerals are chemicals that are required by the body to remain in good health. Because the human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources. The more important minerals include: ·

Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products.

·

Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat.

·

Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste.

108 Reflex Sympathetic Dystrophy Syndrome

·

Iodine helps regulate the body’s use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat.

·

Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables.

·

Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources for magnesium include dried fruit, dark green vegetables, nuts, and seafood.

·

Phosphorous is used by the body to work with calcium to form bones and teeth; food sources for phosphorous include eggs, meat, cereals, and dairy products.

·

Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products.

·

Zinc helps wounds heal, the formation of sperm, and encourage rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts.

The United States government periodically publishes recommended diets and consumption levels of the various elements of food. Again, your doctor may encourage deviations from the average official recommendation based on your specific condition. To learn more about basic dietary guidelines, visit the Web site: http://www.health.gov/dietaryguidelines/. Based on these guidelines, many foods are required to list the nutrition levels on the food’s packaging. Labeling Requirements are listed at the following site maintained by the Food and Drug Administration: http://www.cfsan.fda.gov/~dms/labcons.html. When interpreting these requirements, the government recommends that consumers become familiar with the following abbreviations before reading FDA literature:39 ·

DVs (Daily Values): A new dietary reference term that will appear on the food label. It is made up of two sets of references, DRVs and RDIs.

·

DRVs (Daily Reference Values): A set of dietary references that applies to fat, saturated fat, cholesterol, carbohydrate, protein, fiber, sodium, and potassium.

·

RDIs (Reference Daily Intakes): A set of dietary references based on the Recommended Dietary Allowances for essential vitamins and minerals

39

Adapted from the FDA: http://www.fda.gov/fdac/special/foodlabel/dvs.html.

Researching Nutrition 109

and, in selected groups, protein. The name “RDI” replaces the term “U.S. RDA.” ·

RDAs (Recommended Dietary Allowances): A set of estimated nutrient allowances established by the National Academy of Sciences. It is updated periodically to reflect current scientific knowledge. What Are Dietary Supplements?40

Dietary supplements are widely available through many commercial sources, including health food stores, grocery stores, pharmacies, and by mail. Dietary supplements are provided in many forms including tablets, capsules, powders, gel-tabs, extracts, and liquids. Historically in the United States, the most prevalent type of dietary supplement was a multivitamin/mineral tablet or capsule that was available in pharmacies, either by prescription or “over the counter.” Supplements containing strictly herbal preparations were less widely available. Currently in the United States, a wide array of supplement products are available, including vitamin, mineral, other nutrients, and botanical supplements as well as ingredients and extracts of animal and plant origin. The Office of Dietary Supplements (ODS) of the National Institutes of Health is the official agency of the United States which has the expressed goal of acquiring “new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.”41 According to the ODS, dietary supplements can have an important impact on the prevention and management of disease and on the maintenance of health.42 The ODS notes that considerable research on the effects of dietary supplements has been conducted in Asia and Europe where the use of plant products, in particular, has a long tradition. However, the overwhelming majority of supplements have not been studied scientifically. This discussion has been adapted from the NIH: http://ods.od.nih.gov/whatare/whatare.html. 41 Contact: The Office of Dietary Supplements, National Institutes of Health, Building 31, Room 1B29, 31 Center Drive, MSC 2086, Bethesda, Maryland 20892-2086, Tel: (301) 435-2920, Fax: (301) 480-1845, E-mail: [email protected]. 42 Adapted from http://ods.od.nih.gov/about/about.html. The Dietary Supplement Health and Education Act defines dietary supplements as “a product (other than tobacco) intended to supplement the diet that bears or contains one or more of the following dietary ingredients: a vitamin, mineral, amino acid, herb or other botanical; or a dietary substance for use to supplement the diet by increasing the total dietary intake; or a concentrate, metabolite, constituent, extract, or combination of any ingredient described above; and intended for ingestion in the form of a capsule, powder, softgel, or gelcap, and not represented as a conventional food or as a sole item of a meal or the diet.” 40

110 Reflex Sympathetic Dystrophy Syndrome

To explore the role of dietary supplements in the improvement of health care, the ODS plans, organizes, and supports conferences, workshops, and symposia on scientific topics related to dietary supplements. The ODS often works in conjunction with other NIH Institutes and Centers, other government agencies, professional organizations, and public advocacy groups. To learn more about official information on dietary supplements, visit the ODS site at http://ods.od.nih.gov/whatare/whatare.html. Or contact: The Office of Dietary Supplements National Institutes of Health Building 31, Room 1B29 31 Center Drive, MSC 2086 Bethesda, Maryland 20892-2086 Tel: (301) 435-2920 Fax: (301) 480-1845 E-mail: [email protected]

Finding Studies on Reflex Sympathetic Dystrophy Syndrome The NIH maintains an office dedicated to patient nutrition and diet. The National Institutes of Health’s Office of Dietary Supplements (ODS) offers a searchable bibliographic database called the IBIDS (International Bibliographic Information on Dietary Supplements). The IBIDS contains over 460,000 scientific citations and summaries about dietary supplements and nutrition as well as references to published international, scientific literature on dietary supplements such as vitamins, minerals, and botanicals.43 IBIDS is available to the public free of charge through the ODS Internet page: http://ods.od.nih.gov/databases/ibids.html. After entering the search area, you have three choices: (1) IBIDS Consumer Database, (2) Full IBIDS Database, or (3) Peer Reviewed Citations Only. We recommend that you start with the Consumer Database. While you may not find references for the topics that are of most interest to you, check back periodically as this database is frequently updated. More studies can be found by searching the Full IBIDS Database. Healthcare professionals and Adapted from http://ods.od.nih.gov. IBIDS is produced by the Office of Dietary Supplements (ODS) at the National Institutes of Health to assist the public, healthcare providers, educators, and researchers in locating credible, scientific information on dietary supplements. IBIDS was developed and will be maintained through an interagency partnership with the Food and Nutrition Information Center of the National Agricultural Library, U.S. Department of Agriculture.

43

Researching Nutrition 111

researchers generally use the third option, which lists peer-reviewed citations. In all cases, we suggest that you take advantage of the “Advanced Search” option that allows you to retrieve up to 100 fully explained references in a comprehensive format. Type “reflex sympathetic dystrophy syndrome” (or synonyms) into the search box. To narrow the search, you can also select the “Title” field. The following information is typical of that found when using the “Full IBIDS Database” when searching using “reflex sympathetic dystrophy syndrome” (or a synonym): ·

Burning and pain after injury. Is it causalgia or reflex sympathetic dystrophy? Author(s): University of Kansas. Source: Hodges, D L McGuire, T J Postgrad-Med. 1988 February 1; 83(2): 185-92 0032-5481

·

Complex regional pain syndrome (CRPS) with resistance to local anesthetic block: a case report. Author(s): Department of Anesthesiology, Health Sciences Center, State University of New York at Stony Brook, NY 11794-8480, USA. Source: Maneksha, F R Mirza, H Poppers, P J J-Clin-Anesth. 2000 February; 12(1): 67-71 0952-8180

·

Complex regional pain syndrome type I treated with topical capsaicin: a case report. Author(s): Rehabilitation Center Rijndam, Rotterdam, the Netherlands. [email protected] Source: Ribbers, G M Stam, H J Arch-Phys-Med-Rehabil. 2001 June; 82(6): 851-2 0003-9993

·

Continuous axillary brachial plexus analgesia with low dose morphine in patients with complex regional pain syndromes. Author(s): Clinic for Anaesthesiology, Pain Management Unit and Clinic for Physical Medicine and Rehabilitation, Klinikum Grosshadern, Ludwig-Maximilians-University, Munich, Germany. Source: Azad, S C Beyer, A Romer, A W Galle Rod, A Peter, K Schops, P Eur-J-Anaesthesiol. 2000 March; 17(3): 185-8 0265-0215

·

Eating disorders and reflex sympathetic dystrophy syndrome: is there a common pathway? Author(s): Department of Adolescent and Young Adult Medicine, George Washington University School of Medicine and Health Sciences, Washington, DC, USA. Source: Silber, T J Med-Hypotheses. 1997 March; 48(3): 197-200 0306-9877

112 Reflex Sympathetic Dystrophy Syndrome

·

Reflex sympathetic dystrophy syndrome following herpes zoster. Author(s): Departments of Dermatology and Rehabilitation, Hospital Reina Sofia de Tudela, Tudela, Spain. [email protected] Source: Querol, I Cisneros, T Cutis. 2001 September; 68(3): 179-82 00114162

·

Reflex sympathetic dystrophy syndrome. Diagnosis and management. Source: Smith, D L Campbell, S M West-J-Med. 1987 September; 147(3): 342-5 0093-0415

·

Relief of causalgia with prostaglandin E1 ointment. Author(s): Department of Anesthesiology, Osaka University Medical School, Japan. Source: Mashimo, T Tomi, K Pak, M Demizu, A Yoshiya, I Anesth-Analg. 1991 May; 72(5): 700-1 0003-2999

·

The shoulder-hand syndrome after stroke: a prospective clinical trial. Author(s): Department of Neuropathology, Albert-Ludwigs University, Freiburg, Germany. Source: Braus, D F Krauss, J K Strobel, J Ann-Neurol. 1994 November; 36(5): 728-33 0364-5134

·

X-ray bone densitometry in the diagnosis and followup of reflex sympathetic dystrophy syndrome. Author(s): Clinica de Reumatologia y Rehabilitacion, Santiago, Chile. Source: Arriagada, M Arinoviche, R J-Rheumatol. 1994 March; 21(3): 498500 0315-162X

Federal Resources on Nutrition In addition to the IBIDS, the United States Department of Health and Human Services (HHS) and the United States Department of Agriculture (USDA) provide many sources of information on general nutrition and health. Recommended resources include: ·

healthfinder®, HHS’s gateway to health information, including diet and nutrition: http://www.healthfinder.gov/scripts/SearchContext.asp?topic=238&page=0

·

The United States Department of Agriculture’s Web site dedicated to nutrition information: www.nutrition.gov

·

The Food and Drug Administration’s Web site for federal food safety information: www.foodsafety.gov

Researching Nutrition 113

·

The National Action Plan on Overweight and Obesity sponsored by the United States Surgeon General: http://www.surgeongeneral.gov/topics/obesity/

·

The Center for Food Safety and Applied Nutrition has an Internet site sponsored by the Food and Drug Administration and the Department of Health and Human Services: http://vm.cfsan.fda.gov/

·

Center for Nutrition Policy and Promotion sponsored by the United States Department of Agriculture: http://www.usda.gov/cnpp/

·

Food and Nutrition Information Center, National Agricultural Library sponsored by the United States Department of Agriculture: http://www.nal.usda.gov/fnic/

·

Food and Nutrition Service sponsored by the United States Department of Agriculture: http://www.fns.usda.gov/fns/

Additional Web Resources A number of additional Web sites offer encyclopedic information covering food and nutrition. The following is a representative sample: ·

AOL: http://search.aol.com/cat.adp?id=174&layer=&from=subcats

·

Family Village: http://www.familyvillage.wisc.edu/med_nutrition.html

·

Google: http://directory.google.com/Top/Health/Nutrition/

·

Healthnotes: http://www.thedacare.org/healthnotes/

·

Open Directory Project: http://dmoz.org/Health/Nutrition/

·

Yahoo.com: http://dir.yahoo.com/Health/Nutrition/

·

WebMDÒHealth: http://my.webmd.com/nutrition

·

WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html

Vocabulary Builder The following vocabulary builder defines words used in the references in this chapter that have not been defined in previous chapters: Anesthesiology: A specialty concerned with the study of anesthetics and anesthesia. [NIH]

114 Reflex Sympathetic Dystrophy Syndrome

Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Herpes: Any inflammatory skin disease caused by a herpesvirus and characterized by the formation of clusters of small vesicles. When used alone, the term may refer to herpes simplex or to herpes zoster. [EU] Intestinal: Pertaining to the intestine. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]

Morphine: The principal alkaloid in opium and the prototype opiate analgesic and narcotic. Morphine has widespread effects in the central nervous system and on smooth muscle. [NIH] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Plexus: A network or tangle; a general term for a network of lymphatic vessels, nerves, or veins. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH]

Researching Nutrition 115

Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Thermoregulation: Heat regulation. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU]

Finding Medical Libraries 117

APPENDIX D. FINDING MEDICAL LIBRARIES Overview At a medical library you can find medical texts and reference books, consumer health publications, specialty newspapers and magazines, as well as medical journals. In this Appendix, we show you how to quickly find a medical library in your area.

Preparation Before going to the library, highlight the references mentioned in this sourcebook that you find interesting. Focus on those items that are not available via the Internet, and ask the reference librarian for help with your search. He or she may know of additional resources that could be helpful to you. Most importantly, your local public library and medical libraries have Interlibrary Loan programs with the National Library of Medicine (NLM), one of the largest medical collections in the world. According to the NLM, most of the literature in the general and historical collections of the National Library of Medicine is available on interlibrary loan to any library. NLM’s interlibrary loan services are only available to libraries. If you would like to access NLM medical literature, then visit a library in your area that can request the publications for you.44

44

Adapted from the NLM: http://www.nlm.nih.gov/psd/cas/interlibrary.html.

118 Reflex Sympathetic Dystrophy Syndrome

Finding a Local Medical Library The quickest method to locate medical libraries is to use the Internet-based directory published by the National Network of Libraries of Medicine (NN/LM). This network includes 4626 members and affiliates that provide many services to librarians, health professionals, and the public. To find a library in your area, simply visit http://nnlm.gov/members/adv.html or call 1-800-338-7657.

Medical Libraries Open to the Public In addition to the NN/LM, the National Library of Medicine (NLM) lists a number of libraries that are generally open to the public and have reference facilities. The following is the NLM’s list plus hyperlinks to each library Web site. These Web pages can provide information on hours of operation and other restrictions. The list below is a small sample of libraries recommended by the National Library of Medicine (sorted alphabetically by name of the U.S. state or Canadian province where the library is located):45 ·

Alabama: Health InfoNet of Jefferson County (Jefferson County Library Cooperative, Lister Hill Library of the Health Sciences), http://www.uab.edu/infonet/

·

Alabama: Richard M. Scrushy Library (American Sports Medicine Institute), http://www.asmi.org/LIBRARY.HTM

·

Arizona: Samaritan Regional Medical Center: The Learning Center (Samaritan Health System, Phoenix, Arizona), http://www.samaritan.edu/library/bannerlibs.htm

·

California: Kris Kelly Health Information Center (St. Joseph Health System), http://www.humboldt1.com/~kkhic/index.html

·

California: Community Health Library of Los Gatos (Community Health Library of Los Gatos), http://www.healthlib.org/orgresources.html

·

California: Consumer Health Program and Services (CHIPS) (County of Los Angeles Public Library, Los Angeles County Harbor-UCLA Medical Center Library) - Carson, CA, http://www.colapublib.org/services/chips.html

·

California: Gateway Health Library (Sutter Gould Medical Foundation)

·

California: Health Library (Stanford University Medical Center), http://www-med.stanford.edu/healthlibrary/

45

Abstracted from http://www.nlm.nih.gov/medlineplus/libraries.html.

Finding Medical Libraries 119

·

California: Patient Education Resource Center - Health Information and Resources (University of California, San Francisco), http://sfghdean.ucsf.edu/barnett/PERC/default.asp

·

California: Redwood Health Library (Petaluma Health Care District), http://www.phcd.org/rdwdlib.html

·

California: San José PlaneTree Health Library, http://planetreesanjose.org/

·

California: Sutter Resource Library (Sutter Hospitals Foundation), http://go.sutterhealth.org/comm/resc-library/sac-resources.html

·

California: University of California, Davis. Health Sciences Libraries

·

California: ValleyCare Health Library & Ryan Comer Cancer Resource Center (ValleyCare Health System), http://www.valleycare.com/library.html

·

California: Washington Community Health Resource Library (Washington Community Health Resource Library), http://www.healthlibrary.org/

·

Colorado: William V. Gervasini Memorial Library (Exempla Healthcare), http://www.exempla.org/conslib.htm

·

Connecticut: Hartford Hospital Health Science Libraries (Hartford Hospital), http://www.harthosp.org/library/

·

Connecticut: Healthnet: Connecticut Consumer Health Information Center (University of Connecticut Health Center, Lyman Maynard Stowe Library), http://library.uchc.edu/departm/hnet/

·

Connecticut: Waterbury Hospital Health Center Library (Waterbury Hospital), http://www.waterburyhospital.com/library/consumer.shtml

·

Delaware: Consumer Health Library (Christiana Care Health System, Eugene du Pont Preventive Medicine & Rehabilitation Institute), http://www.christianacare.org/health_guide/health_guide_pmri_health _info.cfm

·

Delaware: Lewis B. Flinn Library (Delaware Academy of Medicine), http://www.delamed.org/chls.html

·

Georgia: Family Resource Library (Medical College of Georgia), http://cmc.mcg.edu/kids_families/fam_resources/fam_res_lib/frl.htm

·

Georgia: Health Resource Center (Medical Center of Central Georgia), http://www.mccg.org/hrc/hrchome.asp

·

Hawaii: Hawaii Medical Library: Consumer Health Information Service (Hawaii Medical Library), http://hml.org/CHIS/

120 Reflex Sympathetic Dystrophy Syndrome

·

Idaho: DeArmond Consumer Health Library (Kootenai Medical Center), http://www.nicon.org/DeArmond/index.htm

·

Illinois: Health Learning Center of Northwestern Memorial Hospital (Northwestern Memorial Hospital, Health Learning Center), http://www.nmh.org/health_info/hlc.html

·

Illinois: Medical Library (OSF Saint Francis Medical Center), http://www.osfsaintfrancis.org/general/library/

·

Kentucky: Medical Library - Services for Patients, Families, Students & the Public (Central Baptist Hospital), http://www.centralbap.com/education/community/library.htm

·

Kentucky: University of Kentucky - Health Information Library (University of Kentucky, Chandler Medical Center, Health Information Library), http://www.mc.uky.edu/PatientEd/

·

Louisiana: Alton Ochsner Medical Foundation Library (Alton Ochsner Medical Foundation), http://www.ochsner.org/library/

·

Louisiana: Louisiana State University Health Sciences Center Medical Library-Shreveport, http://lib-sh.lsuhsc.edu/

·

Maine: Franklin Memorial Hospital Medical Library (Franklin Memorial Hospital), http://www.fchn.org/fmh/lib.htm

·

Maine: Gerrish-True Health Sciences Library (Central Maine Medical Center), http://www.cmmc.org/library/library.html

·

Maine: Hadley Parrot Health Science Library (Eastern Maine Healthcare), http://www.emh.org/hll/hpl/guide.htm

·

Maine: Maine Medical Center Library (Maine Medical Center), http://www.mmc.org/library/

·

Maine: Parkview Hospital, http://www.parkviewhospital.org/communit.htm#Library

·

Maine: Southern Maine Medical Center Health Sciences Library (Southern Maine Medical Center), http://www.smmc.org/services/service.php3?choice=10

·

Maine: Stephens Memorial Hospital Health Information Library (Western Maine Health), http://www.wmhcc.com/hil_frame.html

·

Manitoba, Canada: Consumer & Patient Health Information Service (University of Manitoba Libraries), http://www.umanitoba.ca/libraries/units/health/reference/chis.html

·

Manitoba, Canada: J.W. Crane Memorial Library (Deer Lodge Centre), http://www.deerlodge.mb.ca/library/libraryservices.shtml

Finding Medical Libraries 121

·

Maryland: Health Information Center at the Wheaton Regional Library (Montgomery County, Md., Dept. of Public Libraries, Wheaton Regional Library), http://www.mont.lib.md.us/healthinfo/hic.asp

·

Massachusetts: Baystate Medical Center Library (Baystate Health System), http://www.baystatehealth.com/1024/

·

Massachusetts: Boston University Medical Center Alumni Medical Library (Boston University Medical Center), http://medlibwww.bu.edu/library/lib.html

·

Massachusetts: Lowell General Hospital Health Sciences Library (Lowell General Hospital), http://www.lowellgeneral.org/library/HomePageLinks/WWW.htm

·

Massachusetts: Paul E. Woodard Health Sciences Library (New England Baptist Hospital), http://www.nebh.org/health_lib.asp

·

Massachusetts: St. Luke’s Hospital Health Sciences Library (St. Luke’s Hospital), http://www.southcoast.org/library/

·

Massachusetts: Treadwell Library Consumer Health Reference Center (Massachusetts General Hospital), http://www.mgh.harvard.edu/library/chrcindex.html

·

Massachusetts: UMass HealthNet (University of Massachusetts Medical School), http://healthnet.umassmed.edu/

·

Michigan: Botsford General Hospital Library - Consumer Health (Botsford General Hospital, Library & Internet Services), http://www.botsfordlibrary.org/consumer.htm

·

Michigan: Helen DeRoy Medical Library (Providence Hospital and Medical Centers), http://www.providence-hospital.org/library/

·

Michigan: Marquette General Hospital - Consumer Health Library (Marquette General Hospital, Health Information Center), http://www.mgh.org/center.html

·

Michigan: Patient Education Resouce Center - University of Michigan Cancer Center (University of Michigan Comprehensive Cancer Center), http://www.cancer.med.umich.edu/learn/leares.htm

·

Michigan: Sladen Library & Center for Health Information Resources Consumer Health Information, http://www.sladen.hfhs.org/library/consumer/index.html

·

Montana: Center for Health Information (St. Patrick Hospital and Health Sciences Center), http://www.saintpatrick.org/chi/librarydetail.php3?ID=41

122 Reflex Sympathetic Dystrophy Syndrome

·

National: Consumer Health Library Directory (Medical Library Association, Consumer and Patient Health Information Section), http://caphis.mlanet.org/directory/index.html

·

National: National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the United States who do not have access to a medical library, http://nnlm.gov/

·

National: NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine), http://nnlm.gov/members/

·

Nevada: Health Science Library, West Charleston Library (Las Vegas Clark County Library District), http://www.lvccld.org/special_collections/medical/index.htm

·

New Hampshire: Dartmouth Biomedical Libraries (Dartmouth College Library), http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld/

·

New Jersey: Consumer Health Library (Rahway Hospital), http://www.rahwayhospital.com/library.htm

·

New Jersey: Dr. Walter Phillips Health Sciences Library (Englewood Hospital and Medical Center), http://www.englewoodhospital.com/links/index.htm

·

New Jersey: Meland Foundation (Englewood Hospital and Medical Center), http://www.geocities.com/ResearchTriangle/9360/

·

New York: Choices in Health Information (New York Public Library) NLM Consumer Pilot Project participant, http://www.nypl.org/branch/health/links.html

·

New York: Health Information Center (Upstate Medical University, State University of New York), http://www.upstate.edu/library/hic/

·

New York: Health Sciences Library (Long Island Jewish Medical Center), http://www.lij.edu/library/library.html

·

New York: ViaHealth Medical Library (Rochester General Hospital), http://www.nyam.org/library/

·

Ohio: Consumer Health Library (Akron General Medical Center, Medical & Consumer Health Library), http://www.akrongeneral.org/hwlibrary.htm

·

Oklahoma: Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System), http://www.sfhtulsa.com/patientfamilycenter/default.asp

Finding Medical Libraries 123

·

Oregon: Planetree Health Resource Center (Mid-Columbia Medical Center), http://www.mcmc.net/phrc/

·

Pennsylvania: Community Health Information Library (Milton S. Hershey Medical Center), http://www.hmc.psu.edu/commhealth/

·

Pennsylvania: Community Health Resource Library (Geisinger Medical Center), http://www.geisinger.edu/education/commlib.shtml

·

Pennsylvania: HealthInfo Library (Moses Taylor Hospital), http://www.mth.org/healthwellness.html

·

Pennsylvania: Hopwood Library (University of Pittsburgh, Health Sciences Library System), http://www.hsls.pitt.edu/chi/hhrcinfo.html

·

Pennsylvania: Koop Community Health Information Center (College of Physicians of Philadelphia), http://www.collphyphil.org/kooppg1.shtml

·

Pennsylvania: Learning Resources Center - Medical Library (Susquehanna Health System), http://www.shscares.org/services/lrc/index.asp

·

Pennsylvania: Medical Library (UPMC Health System), http://www.upmc.edu/passavant/library.htm

·

Quebec, Canada: Medical Library (Montreal General Hospital), http://ww2.mcgill.ca/mghlib/

·

South Dakota: Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center), http://www.rcrh.org/education/LibraryResourcesConsumers.htm

·

Texas: Houston HealthWays (Houston Academy of Medicine-Texas Medical Center Library), http://hhw.library.tmc.edu/

·

Texas: Matustik Family Resource Center (Cook Children’s Health Care System), http://www.cookchildrens.com/Matustik_Library.html

·

Washington: Community Health Library (Kittitas Valley Community Hospital), http://www.kvch.com/

·

Washington: Southwest Washington Medical Center Library (Southwest Washington Medical Center), http://www.swmedctr.com/Home/

Your Rights and Insurance 125

APPENDIX E. YOUR RIGHTS AND INSURANCE Overview Any patient with reflex sympathetic dystrophy syndrome faces a series of issues related more to the healthcare industry than to the medical condition itself. This appendix covers two important topics in this regard: your rights and responsibilities as a patient, and how to get the most out of your medical insurance plan.

Your Rights as a Patient The President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has created the following summary of your rights as a patient.46

Information Disclosure Consumers have the right to receive accurate, easily understood information. Some consumers require assistance in making informed decisions about health plans, health professionals, and healthcare facilities. Such information includes: ·

Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status, comparable measures of quality and consumer satisfaction, provider

46Adapted

from Consumer Bill of Rights and Responsibilities: http://www.hcqualitycommission.gov/press/cbor.html#head1.

126 Reflex Sympathetic Dystrophy Syndrome

network composition, the procedures that govern access to specialists and emergency services, and care management information. ·

Health professionals. Education, board certification, and recertification, years of practice, experience performing certain procedures, and comparable measures of quality and consumer satisfaction.

·

Healthcare facilities. Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker, and consumer satisfaction, and procedures for resolving complaints.

·

Consumer assistance programs. Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Desirable characteristics of such programs are sponsorship that ensures accountability to the interests of consumers and stable, adequate funding. Choice of Providers and Plans

Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality healthcare. To ensure such choice, the Commission recommends the following: ·

Provider network adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers.

·

Women’s health services. Women should be able to choose a qualified provider offered by a plan -- such as gynecologists, certified nurse midwives, and other qualified healthcare providers -- for the provision of covered care necessary to provide routine and preventative women’s healthcare services.

·

Access to specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access to a qualified specialist of their choice within a plan’s network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan.

Your Rights and Insurance 127

·

Transitional care. Consumers who are undergoing a course of treatment for a chronic or disabling condition (or who are in the second or third trimester of a pregnancy) at the time they involuntarily change health plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days (or through completion of postpartum care) to allow for transition of care.

·

Choice of health plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans.

Access to Emergency Services Consumers have the right to access emergency healthcare services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing that consumer’s health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part. Participation in Treatment Decisions Consumers have the right and responsibility to fully participate in all decisions related to their healthcare. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Physicians and other health professionals should: ·

Provide patients with sufficient information and opportunity to decide among treatment options consistent with the informed consent process.

·

Discuss all treatment options with a patient in a culturally competent manner, including the option of no treatment at all.

·

Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.

·

Discuss all current treatments a consumer may be undergoing.

·

Discuss all risks, nontreatment.

benefits,

and

consequences

to

treatment

or

128 Reflex Sympathetic Dystrophy Syndrome

·

Give patients the opportunity to refuse treatment and to express preferences about future treatment decisions.

·

Discuss the use of advance directives -- both living wills and durable powers of attorney for healthcare -- with patients and their designated family members.

·

Abide by the decisions made by their patients and/or their designated representatives consistent with the informed consent process.

Health plans, health providers, and healthcare facilities should: ·

Disclose to consumers factors -- such as methods of compensation, ownership of or interest in healthcare facilities, or matters of conscience -that could influence advice or treatment decisions.

·

Assure that provider contracts do not contain any so-called “gag clauses” or other contractual mechanisms that restrict healthcare providers’ ability to communicate with and advise patients about medically necessary treatment options.

·

Be prohibited from penalizing or seeking retribution against healthcare professionals or other health workers for advocating on behalf of their patients.

Respect and Nondiscrimination Consumers have the right to considerate, respectful care from all members of the healthcare industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system. To assure that right, the Commission recommends the following: ·

Consumers must not be discriminated against in the delivery of healthcare services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.

·

Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.

Your Rights and Insurance 129

Confidentiality of Health Information Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records.

Complaints and Appeals Consumers have the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. A free copy of the Patient’s Bill of Rights is available from the American Hospital Association.47

Patient Responsibilities Treatment is a two-way street between you and your healthcare providers. To underscore the importance of finance in modern healthcare as well as your responsibility for the financial aspects of your care, the President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has proposed that patients understand the following “Consumer Responsibilities.”48 In a healthcare system that protects consumers’ rights, it is reasonable to expect and encourage consumers to assume certain responsibilities. Greater individual involvement by the consumer in his or her care increases the likelihood of achieving the best outcome and helps support a quality-oriented, cost-conscious environment. Such responsibilities include: ·

Take responsibility for maximizing healthy habits such as exercising, not smoking, and eating a healthy diet.

·

Work collaboratively with healthcare providers in developing and carrying out agreed-upon treatment plans.

·

Disclose relevant information and clearly communicate wants and needs.

To order your free copy of the Patient’s Bill of Rights, telephone 312-422-3000 or visit the American Hospital Association’s Web site: http://www.aha.org. Click on “Resource Center,” go to “Search” at bottom of page, and then type in “Patient’s Bill of Rights.” The Patient’s Bill of Rights is also available from Fax on Demand, at 312-422-2020, document number 471124. 48 Adapted from http://www.hcqualitycommission.gov/press/cbor.html#head1. 47

130 Reflex Sympathetic Dystrophy Syndrome

·

Use your health insurance plan’s internal complaint and appeal processes to address your concerns.

·

Avoid knowingly spreading disease.

·

Recognize the reality of risks, the limits of the medical science, and the human fallibility of the healthcare professional.

·

Be aware of a healthcare provider’s obligation to be reasonably efficient and equitable in providing care to other patients and the community.

·

Become knowledgeable about your health plan’s coverage and options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules, appropriate processes to secure additional information, and the process to appeal coverage decisions.

·

Show respect for other patients and health workers.

·

Make a good-faith effort to meet financial obligations.

·

Abide by administrative and operational procedures of health plans, healthcare providers, and Government health benefit programs.

Choosing an Insurance Plan There are a number of official government agencies that help consumers understand their healthcare insurance choices.49 The U.S. Department of Labor, in particular, recommends ten ways to make your health benefits choices work best for you.50 1. Your options are important. There are many different types of health benefit plans. Find out which one your employer offers, then check out the plan, or plans, offered. Your employer’s human resource office, the health plan administrator, or your union can provide information to help you match your needs and preferences with the available plans. The more information you have, the better your healthcare decisions will be. 2. Reviewing the benefits available. Do the plans offered cover preventive care, well-baby care, vision or dental care? Are there deductibles? Answers to these questions can help determine the out-of-pocket expenses you may More information about quality across programs is provided at the following AHRQ Web site: http://www.ahrq.gov/consumer/qntascii/qnthplan.htm. 50 Adapted from the Department of Labor: http://www.dol.gov/dol/pwba/public/pubs/health/top10-text.html. 49

Your Rights and Insurance 131

face. Matching your needs and those of your family members will result in the best possible benefits. Cheapest may not always be best. Your goal is high quality health benefits. 3. Look for quality. The quality of healthcare services varies, but quality can be measured. You should consider the quality of healthcare in deciding among the healthcare plans or options available to you. Not all health plans, doctors, hospitals and other providers give the highest quality care. Fortunately, there is quality information you can use right now to help you compare your healthcare choices. Find out how you can measure quality. Consult the U.S. Department of Health and Human Services publication “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer. 4. Your plan’s summary plan description (SPD) provides a wealth of information. Your health plan administrator can provide you with a copy of your plan’s SPD. It outlines your benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your health benefits. It should contain information about the coverage of dependents, what services will require a co-pay, and the circumstances under which your employer can change or terminate a health benefits plan. Save the SPD and all other health plan brochures and documents, along with memos or correspondence from your employer relating to health benefits. 5. Assess your benefit coverage as your family status changes. Marriage, divorce, childbirth or adoption, and the death of a spouse are all life events that may signal a need to change your health benefits. You, your spouse and dependent children may be eligible for a special enrollment period under provisions of the Health Insurance Portability and Accountability Act (HIPAA). Even without life-changing events, the information provided by your employer should tell you how you can change benefits or switch plans, if more than one plan is offered. If your spouse’s employer also offers a health benefits package, consider coordinating both plans for maximum coverage. 6. Changing jobs and other life events can affect your health benefits. Under the Consolidated Omnibus Budget Reconciliation Act (COBRA), you, your covered spouse, and your dependent children may be eligible to purchase extended health coverage under your employer’s plan if you lose your job, change employers, get divorced, or upon occurrence of certain other events. Coverage can range from 18 to 36 months depending on your situation. COBRA applies to most employers with 20 or more workers and

132 Reflex Sympathetic Dystrophy Syndrome

requires your plan to notify you of your rights. Most plans require eligible individuals to make their COBRA election within 60 days of the plan’s notice. Be sure to follow up with your plan sponsor if you don’t receive notice, and make sure you respond within the allotted time. 7. HIPAA can also help if you are changing jobs, particularly if you have a medical condition. HIPAA generally limits pre-existing condition exclusions to a maximum of 12 months (18 months for late enrollees). HIPAA also requires this maximum period to be reduced by the length of time you had prior “creditable coverage.” You should receive a certificate documenting your prior creditable coverage from your old plan when coverage ends. 8. Plan for retirement. Before you retire, find out what health benefits, if any, extend to you and your spouse during your retirement years. Consult with your employer’s human resources office, your union, the plan administrator, and check your SPD. Make sure there is no conflicting information among these sources about the benefits you will receive or the circumstances under which they can change or be eliminated. With this information in hand, you can make other important choices, like finding out if you are eligible for Medicare and Medigap insurance coverage. 9. Know how to file an appeal if your health benefits claim is denied. Understand how your plan handles grievances and where to make appeals of the plan’s decisions. Keep records and copies of correspondence. Check your health benefits package and your SPD to determine who is responsible for handling problems with benefit claims. Contact PWBA for customer service assistance if you are unable to obtain a response to your complaint. 10. You can take steps to improve the quality of the healthcare and the health benefits you receive. Look for and use things like Quality Reports and Accreditation Reports whenever you can. Quality reports may contain consumer ratings -- how satisfied consumers are with the doctors in their plan, for instance-- and clinical performance measures -- how well a healthcare organization prevents and treats illness. Accreditation reports provide information on how accredited organizations meet national standards, and often include clinical performance measures. Look for these quality measures whenever possible. Consult “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.

Your Rights and Insurance 133

Medicare and Medicaid Illness strikes both rich and poor families. For low-income families, Medicaid is available to defer the costs of treatment. The Health Care Financing Administration (HCFA) administers Medicare, the nation’s largest health insurance program, which covers 39 million Americans. In the following pages, you will learn the basics about Medicare insurance as well as useful contact information on how to find more in-depth information about Medicaid.51 Who is Eligible for Medicare? Generally, you are eligible for Medicare if you or your spouse worked for at least 10 years in Medicare-covered employment and you are 65 years old and a citizen or permanent resident of the United States. You might also qualify for coverage if you are under age 65 but have a disability or EndStage Renal disease (permanent kidney failure requiring dialysis or transplant). Here are some simple guidelines: You can get Part A at age 65 without having to pay premiums if: ·

You are already receiving retirement benefits from Social Security or the Railroad Retirement Board.

·

You are eligible to receive Social Security or Railroad benefits but have not yet filed for them.

·

You or your spouse had Medicare-covered government employment.

If you are under 65, you can get Part A without having to pay premiums if: ·

You have received Social Security or Railroad Retirement Board disability benefit for 24 months.

·

You are a kidney dialysis or kidney transplant patient.

Medicare has two parts: ·

Part A (Hospital Insurance). Most people do not have to pay for Part A.

·

Part B (Medical Insurance). Most people pay monthly for Part B.

This section has been adapted from the Official U.S. Site for Medicare Information: http://www.medicare.gov/Basics/Overview.asp.

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134 Reflex Sympathetic Dystrophy Syndrome

Part A (Hospital Insurance) Helps Pay For: Inpatient hospital care, care in critical access hospitals (small facilities that give limited outpatient and inpatient services to people in rural areas) and skilled nursing facilities, hospice care, and some home healthcare. Cost: Most people get Part A automatically when they turn age 65. You do not have to pay a monthly payment called a premium for Part A because you or a spouse paid Medicare taxes while you were working. If you (or your spouse) did not pay Medicare taxes while you were working and you are age 65 or older, you still may be able to buy Part A. If you are not sure you have Part A, look on your red, white, and blue Medicare card. It will show “Hospital Part A” on the lower left corner of the card. You can also call the Social Security Administration toll free at 1-800-772-1213 or call your local Social Security office for more information about buying Part A. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Fiscal Intermediary about Part A bills and services. The phone number for the Fiscal Intermediary office in your area can be obtained from the following Web site: http://www.medicare.gov/Contacts/home.asp. Part B (Medical Insurance) Helps Pay For: Doctors, services, outpatient hospital care, and some other medical services that Part A does not cover, such as the services of physical and occupational therapists, and some home healthcare. Part B helps pay for covered services and supplies when they are medically necessary. Cost: As of 2001, you pay the Medicare Part B premium of $50.00 per month. In some cases this amount may be higher if you did not choose Part B when you first became eligible at age 65. The cost of Part B may go up 10% for each 12-month period that you were eligible for Part B but declined coverage, except in special cases. You will have to pay the extra 10% cost for the rest of your life. Enrolling in Part B is your choice. You can sign up for Part B anytime during a 7-month period that begins 3 months before you turn 65. Visit your local Social Security office, or call the Social Security Administration at 1-800-7721213 to sign up. If you choose to enroll in Part B, the premium is usually taken out of your monthly Social Security, Railroad Retirement, or Civil Service Retirement payment. If you do not receive any of the above

Your Rights and Insurance 135

payments, Medicare sends you a bill for your part B premium every 3 months. You should receive your Medicare premium bill in the mail by the 10th of the month. If you do not, call the Social Security Administration at 1800-772-1213, or your local Social Security office. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Medicare carrier about bills and services. The phone number for the Medicare carrier in your area can be found at the following Web site: http://www.medicare.gov/Contacts/home.asp. You may have choices in how you get your healthcare including the Original Medicare Plan, Medicare Managed Care Plans (like HMOs), and Medicare Private Fee-for-Service Plans. Medicaid Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs vary from state to state. People on Medicaid may also get coverage for nursing home care and outpatient prescription drugs which are not covered by Medicare. You can find more information about Medicaid on the HCFA.gov Web site at http://www.hcfa.gov/medicaid/medicaid.htm. States also have programs that pay some or all of Medicare’s premiums and may also pay Medicare deductibles and coinsurance for certain people who have Medicare and a low income. To qualify, you must have: ·

Part A (Hospital Insurance),

·

Assets, such as bank accounts, stocks, and bonds that are not more than $4,000 for a single person, or $6,000 for a couple, and

·

A monthly income that is below certain limits.

For more information on these programs, look at the Medicare Savings Programs brochure, http://www.medicare.gov/Library/PDFNavigation/PDFInterim.asp?Langua ge=English&Type=Pub&PubID=10126. There are also Prescription Drug Assistance Programs available. Find information on these programs which offer discounts or free medications to individuals in need at http://www.medicare.gov/Prescription/Home.asp.

136 Reflex Sympathetic Dystrophy Syndrome

NORD’s Medication Assistance Programs Finally, the National Organization for Rare Disorders, Inc. (NORD) administers medication programs sponsored by humanitarian-minded pharmaceutical and biotechnology companies to help uninsured or underinsured individuals secure life-saving or life-sustaining drugs.52 NORD programs ensure that certain vital drugs are available “to those individuals whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA). In these programs, a limited number of individuals can receive investigational drugs that have yet to be approved by the FDA. These programs are generally designed for rare diseases or disorders. For more information, visit www.rarediseases.org.

Additional Resources In addition to the references already listed in this chapter, you may need more information on health insurance, hospitals, or the healthcare system in general. The NIH has set up an excellent guidance Web site that addresses these and other issues. Topics include:53 ·

Health Insurance: http://www.nlm.nih.gov/medlineplus/healthinsurance.html

·

Health Statistics: http://www.nlm.nih.gov/medlineplus/healthstatistics.html

·

HMO and Managed Care: http://www.nlm.nih.gov/medlineplus/managedcare.html

·

Hospice Care: http://www.nlm.nih.gov/medlineplus/hospicecare.html

·

Medicaid: http://www.nlm.nih.gov/medlineplus/medicaid.html

·

Medicare: http://www.nlm.nih.gov/medlineplus/medicare.html

·

Nursing Homes and Long-term Care: http://www.nlm.nih.gov/medlineplus/nursinghomes.html

Adapted from NORD: http://www.rarediseases.org/cgibin/nord/progserv#patient?id=rPIzL9oD&mv_pc=30. 53 You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html. 52

Your Rights and Insurance 137

·

Patient’s Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues: http://www.nlm.nih.gov/medlineplus/patientissues.html

·

Veteran’s Health, Persian Gulf War, Gulf War Syndrome, Agent Orange: http://www.nlm.nih.gov/medlineplus/veteranshealth.html

More on Pain 139

APPENDIX F. MORE ON PAIN Overview54 You know it at once. It may be the fiery sensation of a burn moments after your finger touches the stove. Or it’s a dull ache above your brow after a day of stress and tension. Or you may recognize it as a sharp pierce in your back after you lift something heavy. It is pain. In its most benign form, it warns us that something isn’t quite right, that we should take medicine or see a doctor. At its worst, however, pain robs us of our productivity, our well-being, and, for many of us suffering from extended illness, our very lives. Pain is a complex perception that differs enormously among individual patients, even those who appear to have identical injuries or illnesses. In 1931, the French medical missionary Dr. Albert Schweitzer wrote, “Pain is a more terrible lord of mankind than even death itself.” Today, pain has become the universal disorder, a serious and costly public health issue, and a challenge for family, friends, and health care providers who must give support to the individual suffering from the physical as well as the emotional consequences of pain.

A Brief History of Pain Ancient civilizations recorded on stone tablets accounts of pain and the treatments used: pressure, heat, water, and sun. Early humans related pain Adapted from The National Institute of Neurological Disorders and Stroke (NINDS): http://www.ninds.nih.gov/health_and_medical/pubs/pain.htm.

54

140 Reflex Sympathetic Dystrophy Syndrome

to evil, magic, and demons. Relief of pain was the responsibility of sorcerers, shamans, priests, and priestesses, who used herbs, rites, and ceremonies as their treatments. The Greeks and Romans were the first to advance a theory of sensation, the idea that the brain and nervous system have a role in producing the perception of pain. But it was not until the Middle Ages and well into the Renaissance-the 1400s and 1500s-that evidence began to accumulate in support of these theories. Leonardo da Vinci and his contemporaries came to believe that the brain was the central organ responsible for sensation. Da Vinci also developed the idea that the spinal cord transmits sensations to the brain. In the 17th and 18th centuries, the study of the body-and the sensescontinued to be a source of wonder for the world’s philosophers. In 1664, the French philosopher René Descartes described what to this day is still called a “pain pathway.” Descartes illustrated how particles of fire, in contact with the foot, travel to the brain and he compared pain sensation to the ringing of a bell. In the 19th century, pain came to dwell under a new domain-science-paving the way for advances in pain therapy. Physician-scientists discovered that opium, morphine, codeine, and cocaine could be used to treat pain. These drugs led to the development of aspirin, to this day the most commonly used pain reliever. Before long, anesthesia-both general and regional-was refined and applied during surgery. “It has no future but itself,” wrote the 19th century American poet Emily Dickinson, speaking about pain. As the 21st century unfolds, however, advances in pain research are creating a less grim future than that portrayed in Dickinson’s verse, a future that includes a better understanding of pain, along with greatly improved treatments to keep it in check.

The Two Faces of Pain: Acute and Chronic What is pain? The International Association for the Study of Pain defines it as: An unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage.

More on Pain 141

It is useful to distinguish between two basic types of pain, acute and chronic, and they differ greatly: ·

Acute pain, for the most part, results from disease, inflammation, or injury to tissues. This type of pain generally comes on suddenly, for example, after trauma or surgery, and may be accompanied by anxiety or emotional distress. The cause of acute pain can usually be diagnosed and treated, and the pain is self-limiting, that is, it is confined to a given period of time and severity. In some rare instances, it can become chronic.

·

Chronic pain is widely believed to represent disease itself. It can be made much worse by environmental and psychological factors. Chronic pain persists over a longer period of time than acute pain and is resistant to most medical treatments. It can—and often does—cause severe problems for patients.

The A to Z of Pain Hundreds of pain syndromes or disorders make up the spectrum of pain. There are the most benign, fleeting sensations of pain, such as a pin prick. There is the pain of childbirth, the pain of a heart attack, and the pain that sometimes follows amputation of a limb. There is also pain accompanying cancer and the pain that follows severe trauma, such as that associated with head and spinal cord injuries. A sampling of common pain syndromes follows, listed alphabetically.

Arachnoiditis Arachnoiditis is a condition in which one of the three membranes covering the brain and spinal cord, called the arachnoid membrane, becomes inflamed. A number of causes, including infection or trauma, can result in inflammation of this membrane. Arachnoiditis can produce disabling, progressive, and even permanent pain.

Arthritis Millions of Americans suffer from arthritic conditions such as osteoarthritis, rheumatoid arthritis, ankylosing spondylitis, and gout. These disorders are characterized by joint pain in the extremities. Many other inflammatory diseases affect the body’s soft tissues, including tendonitis and bursitis.

142 Reflex Sympathetic Dystrophy Syndrome

Back Pain Back pain has become the high price paid by our modern lifestyle and is a startlingly common cause of disability for many Americans, including both active and inactive people. Back pain that spreads to the leg is called sciatica and is a very common condition (see below). Another common type of back pain is associated with the discs of the spine, the soft, spongy padding between the vertebrae (bones) that form the spine. Discs protect the spine by absorbing shock, but they tend to degenerate over time and may sometimes rupture. Spondylolisthesis is a back condition that occurs when one vertebra extends over another, causing pressure on nerves and therefore pain. Also, damage to nerve roots is a serious condition, called radiculopathy, that can be extremely painful. Treatment for a damaged disc includes drugs such as painkillers, muscle relaxants, and steroids; exercise or rest, depending on the patient’s condition; adequate support, such as a brace or better mattress and physical therapy. In some cases, surgery may be required to remove the damaged portion of the disc and return it to its previous condition, especially when it is pressing a nerve root. Surgical procedures include discectomy, laminectomy, or spinal fusion (see section on surgery in How is Pain Treated? for more information on these treatments).

Burn Pain Burn pain can be profound and poses an extreme challenge to the medical community. First-degree burns are the least severe; with third-degree burns, the skin is lost. Depending on the injury, pain accompanying burns can be excruciating, and even after the wound has healed patients may have chronic pain at the burn site.

Cancer Pain Cancer pain can accompany the growth of a tumor, the treatment of cancer, or chronic problems related to cancer’s permanent effects on the body. Fortunately, most cancer pain can be treated to help minimize discomfort and stress to the patient.

More on Pain 143

Headaches Headaches affect millions of Americans. The three most common types of chronic headache are migraines, cluster headaches, and tension headaches. Each comes with its own telltale brand of pain. ·

Migraines are characterized by throbbing pain and sometimes by other symptoms, such as nausea and visual disturbances. Migraines are more frequent in women than men. Stress can trigger a migraine headache, and migraines can also put the sufferer at risk for stroke.

·

Cluster headaches are characterized by excruciating, piercing pain on one side of the head; they occur more frequently in men than women.

·

Tension headaches are often described as a tight band around the head.

Head and Facial Pain Head and facial pain can be agonizing, whether it results from dental problems or from disorders such as cranial neuralgia, in which one of the nerves in the face, head, or neck is inflamed. Another condition, trigeminal neuralgia (also called tic douloureux), affects the largest of the cranial nerves and is characterized by a stabbing, shooting pain.

Muscle Pain Muscle pain can range from an aching muscle, spasm, or strain, to the severe spasticity that accompanies paralysis. Another disabling syndrome is fibromyalgia, a disorder characterized by fatigue, stiffness, joint tenderness, and widespread muscle pain. Polymyositis, dermatomyositis, and inclusion body myositis are painful disorders characterized by muscle inflammation. They may be caused by infection or autoimmune dysfunction and are sometimes associated with connective tissue disorders, such as lupus and rheumatoid arthritis.

Myofascial Pain Myofascial pain syndromes affect sensitive areas known as trigger points, located within the body’s muscles. Myofascial pain syndromes are sometimes misdiagnosed and can be debilitating. Fibromyalgia is a type of myofascial pain syndrome.

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Neuropathic Pain Neuropathic pain is a type of pain that can result from injury to nerves, either in the peripheral or central nervous system. Neuropathic pain can occur in any part of the body and is frequently described as a hot, burning sensation, which can be devastating to the affected individual. It can result from diseases that affect nerves (such as diabetes) or from trauma, or, because chemotherapy drugs can affect nerves, it can be a consequence of cancer treatment. Among the many neuropathic pain conditions are diabetic neuropathy (which results from nerve damage secondary to vascular problems that occur with diabetes); reflex sympathetic dystrophy syndrome, which can follow injury; phantom limb and post-amputation pain, which can result from the surgical removal of a limb; postherpetic neuralgia, which can occur after an outbreak of shingles; and central pain syndrome, which can result from trauma to the brain or spinal cord.

Reflex Sympathetic Dystrophy Syndrome Reflex sympathetic dystrophy syndrome, or RSDS, is accompanied by burning pain and hypersensitivity to temperature. Often triggered by trauma or nerve damage, RSDS causes the skin of the affected area to become characteristically shiny. In recent years, RSDS has come to be called complex regional pain syndrome (CRPS); in the past it was often called causalgia.

Repetitive Stress Injuries Repetitive stress injuries are muscular conditions that result from repeated motions performed in the course of normal work or other daily activities. They include: ·

Writer’s cramp, which affects musicians and writers and others

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Compression or entrapment neuropathies, including carpal tunnel syndrome, caused by chronic overextension of the wrist

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Tendonitis or tenosynovitis, affecting one or more tendons.

Sciatica Sciatica is a painful condition caused by pressure on the sciatic nerve, the main nerve that branches off the spinal cord and continues down into the

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thighs, legs, ankles, and feet. Sciatica is characterized by pain in the buttocks and can be caused by a number of factors. Exertion, obesity, and poor posture can all cause pressure on the sciatic nerve. One common cause of sciatica is a herniated disc.

Shingles Shingles and other painful disorders affect the skin. Pain is a common symptom of many skin disorders, even the most common rashes. One of the most vexing neurological disorders is shingles or herpes zoster, an infection that often causes agonizing pain resistant to treatment. Prompt treatment with antiviral agents is important to arrest the infection, which if prolonged can result in an associated condition known as postherpetic neuralgia. Other painful disorders affecting the skin include: ·

Vasculitis, or inflammation of blood vessels

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Other infections, including herpes simplex

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Skin tumors and cysts

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Tumors associated with neurofibromatosis, a neurogenetic disorder

Sports Injuries Sports injuries are common. Sprains, strains, bruises, dislocations, and fractures are all well-known words in the language of sports. Pain is another. In extreme cases, sports injuries can take the form of costly and painful spinal cord and head injuries, which cause severe suffering and disability. Spinal Stenosis Spinal stenosis refers to a narrowing of the canal surrounding the spinal cord. The condition occurs naturally with aging. Spinal stenosis causes weakness in the legs and leg pain usually felt while the person is standing up and often relieved by sitting down.

Surgical Pain Surgical pain may require regional or general anesthesia during the procedure and medications to control discomfort following the operation.

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Control of pain associated with surgery includes presurgical preparation and careful monitoring of the patient during and after the procedure.

Temporomandibular Disorders Temporomandibular disorders are conditions in which the temporomandibular joint (the jaw) is damaged and/or the muscles used for chewing and talking become stressed, causing pain. The condition may be the result of a number of factors, such as an injury to the jaw or joint misalignment, and may give rise to a variety of symptoms, most commonly pain in the jaw, face, and/or neck muscles. Physicians reach a diagnosis by listening to the patient’s description of the symptoms and by performing a simple examination of the facial muscles and the temporomandibular joint.

Trauma Trauma can occur after injuries in the home, at the workplace, during sports activities, or on the road. Any of these injuries can result in severe disability and pain. Some patients who have had an injury to the spinal cord experience intense pain ranging from tingling to burning and, commonly, both. Such patients are sensitive to hot and cold temperatures and touch. For these individuals, a touch can be perceived as intense burning, indicating abnormal signals relayed to and from the brain. This condition is called central pain syndrome or, if the damage is in the thalamus (the brain’s center for processing bodily sensations), thalamic pain syndrome. It affects as many as 100,000 Americans with multiple sclerosis, Parkinson’s disease, amputated limbs, spinal cord injuries, and stroke. Their pain is severe and is extremely difficult to treat effectively. A variety of medications, including analgesics, antidepressants, anticonvulsants, and electrical stimulation, are options available to central pain patients.

Vascular Disease or Injury Vascular disease or injury-such as vasculitis or inflammation of blood vessels, coronary artery disease, and circulatory problems-all have the potential to cause pain. Vascular pain affects millions of Americans and occurs when communication between blood vessels and nerves is interrupted. Ruptures, spasms, constriction, or obstruction of blood vessels, as well as a condition called ischemia in which blood supply to organs, tissues, or limbs is cut off, can also result in pain.

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How Is Pain Diagnosed? There is no way to tell how much pain a person has. No test can measure the intensity of pain, no imaging device can show pain, and no instrument can locate pain precisely. Sometimes, as in the case of headaches, physicians find that the best aid to diagnosis is the patient’s own description of the type, duration, and location of pain. Defining pain as sharp or dull, constant or intermittent, burning or aching may give the best clues to the cause of pain. These descriptions are part of what is called the pain history, taken by the physician during the preliminary examination of a patient with pain. Physicians, however, do have a number of technologies they use to find the cause of pain. Primarily these include: ·

Electrodiagnostic procedures include electromyography (EMG), nerve conduction studies, and evoked potential (EP) studies. Information from EMG can help physicians tell precisely which muscles or nerves are affected by weakness or pain. Thin needles are inserted in muscles and a physician can see or listen to electrical signals displayed on an EMG machine. With nerve conduction studies the doctor uses two sets of electrodes (similar to those used during an electrocardiogram) that are placed on the skin over the muscles. The first set gives the patient a mild shock that stimulates the nerve that runs to that muscle. The second set of electrodes is used to make a recording of the nerve’s electrical signals, and from this information the doctor can determine if there is nerve damage. EP tests also involve two sets of electrodes-one set for stimulating a nerve (these electrodes are attached to a limb) and another set on the scalp for recording the speed of nerve signal transmission to the brain.

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Imaging, especially magnetic resonance imaging or MRI, provides physicians with pictures of the body’s structures and tissues. MRI uses magnetic fields and radio waves to differentiate between healthy and diseased tissue.

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A neurological examination in which the physician tests movement, reflexes, sensation, balance, and coordination.

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X-rays produce pictures of the body’s structures, such as bones and joints.

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How Is Pain Treated? The goal of pain management is to improve function, enabling individuals to work, attend school, or participate in other day-to-day activities. Patients and their physicians have a number of options for the treatment of pain; some are more effective than others. Sometimes, relaxation and the use of imagery as a distraction provide relief. These methods can be powerful and effective, according to those who advocate their use. Whatever the treatment regime, it is important to remember that pain is treatable. The following treatments are among the most common. ·

Acetaminophen is the basic ingredient found in Tylenol® and its many generic equivalents. It is sold over the counter, in a prescription-strength preparation, and in combination with codeine (also by prescription).

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Acupuncture dates back 2,500 years and involves the application of needles to precise points on the body. It is part of a general category of healing called traditional Chinese or Oriental medicine. Acupuncture remains controversial but is quite popular and may one day prove to be useful for a variety of conditions as it continues to be explored by practitioners, patients, and investigators.

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Analgesic refers to the class of drugs that includes most painkillers, such as aspirin, acetaminophen, and ibuprofen. The word analgesic is derived from ancient Greek and means to reduce or stop pain. Nonprescription or over-the-counter pain relievers are generally used for mild to moderate pain. Prescription pain relievers, sold through a pharmacy under the direction of a physician, are used for more moderate to severe pain.

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Anticonvulsants are used for the treatment of seizure disorders but are also sometimes prescribed for the treatment of pain. Carbamazepine in particular is used to treat a number of painful conditions, including trigeminal neuralgia. Another antiepileptic drug, gabapentin, is being studied for its pain-relieving properties, especially as a treatment for neuropathic pain.

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Antidepressants are sometimes used for the treatment of pain and, along with neuroleptics and lithium, belong to a category of drugs called psychotropic drugs. In addition, anti-anxiety drugs called benzodiazepines also act as muscle relaxants and are sometimes used as pain relievers. Physicians usually try to treat the condition with analgesics before prescribing these drugs.

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Antimigraine drugs include the triptans- sumatriptan (Imitrex®), naratriptan (Amerge®), and zolmitriptan (Zomig®)-and are used specifically for migraine headaches. They can have serious side effects in

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some people and therefore, as with all prescription medicines, should be used only under a doctor’s care. ·

Aspirin may be the most widely used pain-relief agent and has been sold over the counter since 1905 as a treatment for fever, headache, and muscle soreness.

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Biofeedback is used for the treatment of many common pain problems, most notably headache and back pain. Using a special electronic machine, the patient is trained to become aware of, to follow, and to gain control over certain bodily functions, including muscle tension, heart rate, and skin temperature. The individual can then learn to effect a change in his or her responses to pain, for example, by using relaxation techniques. Biofeedback is often used in combination with other treatment methods, generally without side effects. Similarly, the use of relaxation techniques in the treatment of pain can increase the patient’s feeling of well-being.

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Capsaicin is a chemical found in chili peppers that is also a primary ingredient in pain-relieving creams.

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Chemonucleolysis is a treatment in which an enzyme, chymopapain, is injected directly into a herniated lumbar disc in an effort to dissolve material around the disc, thus reducing pressure and pain. The procedure’s use is extremely limited, in part because some patients may have a life-threatening allergic reaction to chymopapain.

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Chiropractic refers to hand manipulation of the spine, usually for relief of back pain, and is a treatment option that continues to grow in popularity among many people who simply seek relief from back disorders. It has never been without controversy, however. Chiropractic’s usefulness as a treatment for back pain is, for the most part, restricted to a select group of individuals with uncomplicated acute low back pain who may derive relief from the massage component of the therapy.

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Cognitive-behavioral therapy involves a wide variety of coping skills and relaxation methods to help prepare for and cope with pain. It is used for postoperative pain, cancer pain, and the pain of childbirth.

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Counseling can give a patient suffering from pain much needed support, whether it is derived from family, group, or individual counseling. Support groups can provide an important adjunct to drug or surgical treatment. Psychological treatment can also help patients learn about the physiological changes produced by pain.

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COX-2 inhibitors (“superaspirins”) may be particularly effective for individuals with arthritis. For many years scientists have wanted to

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develop the ultimate drug-a drug that works as well as morphine but without its negative side effects. Nonsteroidal anti-inflammatory drugs (NSAIDs) work by blocking two enzymes, cyclooxygenase-1 and cyclooxygenase-2, both of which promote production of hormones called prostaglandins, which in turn cause inflammation, fever, and pain. Newer drugs, called COX-2 inhibitors, primarily block cyclooxygenase-2 and are less likely to have the gastrointestinal side effects sometimes produced by NSAIDs. On 1999, the Food and Drug Administration approved two COX-2 inhibitors-rofecoxib (Vioxx®) and celecoxib (Celebrex®). Although the long-term effects of COX-2 inhibitors are still being evaluated, they appear to be safe. In addition, patients may be able to take COX-2 inhibitors in larger doses than aspirin and other drugs that have irritating side effects, earning them the nickname “superaspirins.” ·

Electrical stimulation, including transcutaneous electrical stimulation (TENS), implanted electric nerve stimulation, and deep brain or spinal cord stimulation, is the modern-day extension of age-old practices in which the nerves of muscles are subjected to a variety of stimuli, including heat or massage. Electrical stimulation, no matter what form, involves a major surgical procedure and is not for everyone, nor is it 100 percent effective. The following techniques each require specialized equipment and personnel trained in the specific procedure being used: -

TENS uses tiny electrical pulses, delivered through the skin to nerve fibers, to cause changes in muscles, such as numbness or contractions. This in turn produces temporary pain relief. There is also evidence that TENS can activate subsets of peripheral nerve fibers that can block pain transmission at the spinal cord level, in much the same way that shaking your hand can reduce pain.

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Peripheral nerve stimulation uses electrodes placed surgically on a carefully selected area of the body. The patient is then able to deliver an electrical current as needed to the affected area, using an antenna and transmitter.

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Spinal cord stimulation uses electrodes surgically inserted within the epidural space of the spinal cord. The patient is able to deliver a pulse of electricity to the spinal cord using a small box-like receiver and an antenna taped to the skin.

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Deep brain or intracerebral stimulation is considered an extreme treatment and involves surgical stimulation of the brain, usually the thalamus. It is used for a limited number of conditions, including severe pain, central pain syndrome, cancer pain, phantom limb pain, and other neuropathic pains.

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Exercise has come to be a prescribed part of some doctors’ treatment regimes for patients with pain. Because there is a known link between many types of chronic pain and tense, weak muscles, exercise-even light to moderate exercise such as walking or swimming-can contribute to an overall sense of well-being by improving blood and oxygen flow to muscles. Just as we know that stress contributes to pain, we also know that exercise, sleep, and relaxation can all help reduce stress, thereby helping to alleviate pain. Exercise has been proven to help many people with low back pain. It is important, however, that patients carefully follow the routine laid out by their physicians.

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Hypnosis, first approved for medical use by the American Medical Association in 1958, continues to grow in popularity, especially as an adjunct to pain medication. In general, hypnosis is used to control physical function or response, that is, the amount of pain an individual can withstand. How hypnosis works is not fully understood. Some believe that hypnosis delivers the patient into a trance-like state, while others feel that the individual is simply better able to concentrate and relax or is more responsive to suggestion. Hypnosis may result in relief of pain by acting on chemicals in the nervous system, slowing impulses. Whether and how hypnosis works involves greater insight-and researchinto the mechanisms underlying human consciousness.

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Ibuprofen is a member of the aspirin family of analgesics, the so-called nonsteroidal anti-inflammatory drugs. It is sold over the counter and also comes in prescription-strength preparations.

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Low-power lasers have been used occasionally by some physical therapists as a treatment for pain, but like many other treatments, this method is not without controversy.

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Magnets are increasingly popular with athletes who swear by their effectiveness for the control of sports-related pain and other painful conditions. Usually worn as a collar or wristwatch, the use of magnets as a treatment dates back to the ancient Egyptians and Greeks. While it is often dismissed as quackery and pseudoscience by skeptics, proponents offer the theory that magnets may effect changes in cells or body chemistry, thus producing pain relief.

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Nerve blocks employ the use of drugs, chemical agents, or surgical techniques to interrupt the relay of pain messages between specific areas of the body and the brain. There are many different names for the procedure, depending on the technique or agent used. Types of surgical nerve blocks include neurectomy; spinal dorsal, cranial, and trigeminal rhizotomy; and sympathectomy, also called sympathetic blockade.

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·

Nonsteroidal anti-inflammatory drugs (NSAIDs) (including aspirin and ibuprofen) are widely prescribed and sometimes called non-narcotic or non-opioid analgesics. They work by reducing inflammatory responses in tissues. Many of these drugs irritate the stomach and for that reason are usually taken with food. Although acetaminophen may have some antiinflammatory effects, it is generally distinguished from the traditional NSAIDs.

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Opioids are derived from the poppy plant and are among the oldest drugs known to humankind. They include codeine and perhaps the most well-known narcotic of all, morphine. Morphine can be administered in a variety of forms, including a pump for patient self-administration. Opioids have a narcotic effect, that is, they induce sedation as well as pain relief, and some patients may become physically dependent upon them. For these reasons, patients given opioids should be monitored carefully; in some cases stimulants may be prescribed to counteract the sedative side effects. In addition to drowsiness, other common side effects include constipation, nausea, and vomiting.

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Physical therapy and rehabilitation date back to the ancient practice of using physical techniques and methods, such as heat, cold, exercise, massage, and manipulation, in the treatment of certain conditions. These may be applied to increase function, control pain, and speed the patient toward full recovery.

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Placebos offer some individuals pain relief although whether and how they have an effect is mysterious and somewhat controversial. Placebos are inactive substances, such as sugar pills, or harmless procedures, such as saline injections or sham surgeries, generally used in clinical studies as control factors to help determine the efficacy of active treatments. Although placebos have no direct effect on the underlying causes of pain, evidence from clinical studies suggests that many pain conditions such as migraine headache, back pain, post-surgical pain, rheumatoid arthritis, angina, and depression sometimes respond well to them. This positive response is known as the placebo effect, which is defined as the observable or measurable change that can occur in patients after administration of a placebo. Some experts believe the effect is psychological and that placebos work because the patients believe or expect them to work. Others say placebos relieve pain by stimulating the brain’s own analgesics and setting the body’s self-healing forces in motion. A third theory suggests that the act of taking placebos relieves stress and anxiety-which are known to aggravate some painful conditions-and, thus, cause the patients to feel better. Still, placebos are considered controversial because by definition they are inactive and have no actual curative value.

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R.I.C.E.-Rest, Ice, Compression, and Elevation-are four components prescribed by many orthopedists, coaches, trainers, nurses, and other professionals for temporary muscle or joint conditions, such as sprains or strains. While many common orthopedic problems can be controlled with these four simple steps, especially when combined with over-the-counter pain relievers, more serious conditions may require surgery or physical therapy, including exercise, joint movement or manipulation, and stimulation of muscles.

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Surgery, although not always an option, may be required to relieve pain, especially pain caused by back problems or serious musculoskeletal injuries. Surgery may take the form of a nerve block or it may involve an operation to relieve pain from a ruptured disc. Surgical procedures for back problems include discectomy or, when microsurgical techniques are used, microdiscectomy, in which the entire disc is removed; laminectomy, a procedure in which a surgeon removes only a disc fragment, gaining access by entering through the arched portion of a vertebra; and spinal fusion, a procedure where the entire disc is removed and replaced with a bone graft. In a spinal fusion, the two vertebrae are then fused together. Although the operation can cause the spine to stiffen, resulting in lost flexibility, the procedure serves one critical purpose: protection of the spinal cord. Other operations for pain include rhizotomy, in which a nerve close to the spinal cord is cut, and cordotomy, where bundles of nerves within the spinal cord are severed. Cordotomy is generally used only for the pain of terminal cancer that does not respond to other therapies. Another operation for pain is the dorsal root entry zone operation, or DREZ, in which spinal neurons corresponding to the patient’s pain are destroyed surgically. Because surgery can result in scar tissue formation that may cause additional problems, patients are well advised to seek a second opinion before proceeding. Occasionally, surgery is carried out with electrodes that selectively damage neurons in a targeted area of the brain. These procedures rarely result in long-term pain relief, but both physician and patient may decide that the surgical procedure will be effective enough that it justifies the expense and risk. In some cases, the results of an operation are remarkable. For example, many individuals suffering from trigeminal neuralgia who are not responsive to drug treatment have had great success with a procedure called microvascular decompression, in which tiny blood vessels are surgically separated from surrounding nerves.

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What Are the Roles of Age and Gender in Pain? Gender and Pain It is now widely believed that pain affects men and women differently. While the sex hormones estrogen and testosterone certainly play a role in this phenomenon, psychology and culture, too, may account at least in part for differences in how men and women receive pain signals. For example, young children may learn to respond to pain based on how they are treated when they experience pain. Some children may be cuddled and comforted, while others may be encouraged to tough it out and to dismiss their pain. Many investigators are turning their attention to the study of gender differences and pain. Women, many experts now agree, recover more quickly from pain, seek help more quickly for their pain, and are less likely to allow pain to control their lives. They also are more likely to marshal a variety of resources-coping skills, support, and distraction-with which to deal with their pain. Research in this area is yielding fascinating results. For example, male experimental animals injected with estrogen, a female sex hormone, appear to have a lower tolerance for pain-that is, the addition of estrogen appears to lower the pain threshold. Similarly, the presence of testosterone, a male hormone, appears to elevate tolerance for pain in female mice: the animals are simply able to withstand pain better. Female mice deprived of estrogen during experiments react to stress similarly to male animals. Estrogen, therefore, may act as a sort of pain switch, turning on the ability to recognize pain. Investigators know that males and females both have strong natural painkilling systems, but these systems operate differently. For example, a class of painkillers called kappa-opioids is named after one of several opioid receptors to which they bind, the kappa-opioid receptor, and they include the compounds nalbuphine (Nubain®) and butorphanol (Stadol®). Research suggests that kappa-opioids provide better pain relief in women. Though not prescribed widely, kappa-opioids are currently used for relief of labor pain and in general work best for short-term pain. Investigators are not certain why kappa-opioids work better in women than men. Is it because a woman’s estrogen makes them work, or because a man’s testosterone prevents them from working? Or is there another explanation, such as differences between men and women in their perception of pain? Continued research may result in a better understanding of how pain affects women

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differently from men, enabling new and better pain medications to be designed with gender in mind.

Pain in Aging and Pediatric Populations: Special Needs and Concerns Pain is the number one complaint of older Americans, and one in five older Americans takes a painkiller regularly. In 1998, the American Geriatrics Society (AGS) issued guidelines for the management of pain in older people. The AGS panel addressed the incorporation of several non-drug approaches in patients’ treatment plans, including exercise.55 AGS panel members recommend that, whenever possible, patients use alternatives to aspirin, ibuprofen, and other NSAIDs because of the drugs’ side effects, including stomach irritation and gastrointestinal bleeding. For older adults, acetaminophen is the first-line treatment for mild-to-moderate pain, according to the guidelines. More serious chronic pain conditions may require opioid drugs (narcotics), including codeine or morphine, for relief of pain. Pain in younger patients also requires special attention, particularly because young children are not always able to describe the degree of pain they are experiencing. Although treating pain in pediatric patients poses a special challenge to physicians and parents alike, pediatric patients should never be undertreated. Recently, special tools for measuring pain in children have been developed that, when combined with cues used by parents, help physicians select the most effective treatments. Nonsteroidal agents, and especially acetaminophen, are most often prescribed for control of pain in children. In the case of severe pain or pain following surgery, acetaminophen may be combined with codeine.

A Pain Primer: What Do We Know about Pain? We may experience pain as a prick, tingle, sting, burn, or ache. Receptors on the skin trigger a series of events, beginning with an electrical impulse that travels from the skin to the spinal cord. The spinal cord acts as a sort of relay center where the pain signal can be blocked, enhanced, or otherwise modified before it is relayed to the brain. One area of the spinal cord in

55

Journal of the American Geriatrics Society (1998; 46:635-651).

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particular, called the dorsal horn, is important in the reception of pain signals. The most common destination in the brain for pain signals is the thalamus and from there to the cortex, the headquarters for complex thoughts. The thalamus also serves as the brain’s storage area for images of the body and plays a key role in relaying messages between the brain and various parts of the body. In people who undergo an amputation, the representation of the amputated limb is stored in the thalamus. Pain is a complicated process that involves an intricate interplay between a number of important chemicals found naturally in the brain and spinal cord. In general, these chemicals, called neurotransmitters, transmit nerve impulses from one cell to another. There are many different neurotransmitters in the human body; some play a role in human disease and, in the case of pain, act in various combinations to produce painful sensations in the body. Some chemicals govern mild pain sensations; others control intense or severe pain. The body’s chemicals act in the transmission of pain messages by stimulating neurotransmitter receptors found on the surface of cells; each receptor has a corresponding neurotransmitter. Receptors function much like gates or ports and enable pain messages to pass through and on to neighboring cells. One brain chemical of special interest to neuroscientists is glutamate. During experiments, mice with blocked glutamate receptors show a reduction in their responses to pain. Other important receptors in pain transmission are opiate-like receptors. Morphine and other opioid drugs work by locking on to these opioid receptors, switching on paininhibiting pathways or circuits, and thereby blocking pain. Another type of receptor that responds to painful stimuli is called a nociceptor. Nociceptors are thin nerve fibers in the skin, muscle, and other body tissues, that, when stimulated, carry pain signals to the spinal cord and brain. Normally, nociceptors only respond to strong stimuli such as a pinch. However, when tissues become injured or inflamed, as with a sunburn or infection, they release chemicals that make nociceptors much more sensitive and cause them to transmit pain signals in response to even gentle stimuli such as breeze or a caress. This condition is called allodynia -a state in which pain is produced by innocuous stimuli. The body’s natural painkillers may yet prove to be the most promising pain relievers, pointing to one of the most important new avenues in drug

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development. The brain may signal the release of painkillers found in the spinal cord, including serotonin, norepinephrine, and opioid-like chemicals. Many pharmaceutical companies are working to synthesize these substances in laboratories as future medications. Endorphins and enkephalins are other natural painkillers. Endorphins may be responsible for the “feel good” effects experienced by many people after rigorous exercise; they are also implicated in the pleasurable effects of smoking. Similarly, peptides, compounds that make up proteins in the body, play a role in pain responses. Mice bred experimentally to lack a gene for two peptides called tachykinins-neurokinin A and substance P-have a reduced response to severe pain. When exposed to mild pain, these mice react in the same way as mice that carry the missing gene. But when exposed to more severe pain, the mice exhibit a reduced pain response. This suggests that the two peptides are involved in the production of pain sensations, especially moderate-to-severe pain. Continued research on tachykinins, conducted with support from the NINDS, may pave the way for drugs tailored to treat different severities of pain. Scientists are working to develop potent pain-killing drugs that act on receptors for the chemical acetylcholine. For example, a type of frog native to Ecuador has been found to have a chemical in its skin called epibatidine, derived from the frog’s scientific name, Epipedobates tricolor. Although highly toxic, epibatidine is a potent analgesic and, surprisingly, resembles the chemical nicotine found in cigarettes. Also under development are other less toxic compounds that act on acetylcholine receptors and may prove to be more potent than morphine but without its addictive properties. The idea of using receptors as gateways for pain drugs is a novel idea, supported by experiments involving substance P. Investigators have been able to isolate a tiny population of neurons, located in the spinal cord, that together form a major portion of the pathway responsible for carrying persistent pain signals to the brain. When animals were given injections of a lethal cocktail containing substance P linked to the chemical saporin, this group of cells, whose sole function is to communicate pain, were killed. Receptors for substance P served as a portal or point of entry for the compound. Within days of the injections, the targeted neurons, located in the outer layer of the spinal cord along its entire length, absorbed the compound and were neutralized. The animals’ behavior was completely normal; they no longer exhibited signs of pain following injury or had an exaggerated pain response. Importantly, the animals still responded to acute, that is,

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normal, pain. This is a critical finding as it is important to retain the body’s ability to detect potentially injurious stimuli. The protective, early warning signal that pain provides is essential for normal functioning. If this work can be translated clinically, humans might be able to benefit from similar compounds introduced, for example, through lumbar (spinal) puncture. Another promising area of research using the body’s natural pain-killing abilities is the transplantation of chromaffin cells into the spinal cords of animals bred experimentally to develop arthritis. Chromaffin cells produce several of the body’s pain-killing substances and are part of the adrenal medulla, which sits on top of the kidney. Within a week or so, rats receiving these transplants cease to exhibit telltale signs of pain. Scientists, working with support from the NINDS, believe the transplants help the animals recover from pain-related cellular damage. Extensive animal studies will be required to learn if this technique might be of value to humans with severe pain. One way to control pain outside of the brain, that is, peripherally, is by inhibiting hormones called prostaglandins. Prostaglandins stimulate nerves at the site of injury and cause inflammation and fever. Certain drugs, including NSAIDs, act against such hormones by blocking the enzyme that is required for their synthesis. Blood vessel walls stretch or dilate during a migraine attack and it is thought that serotonin plays a complicated role in this process. For example, before a migraine headache, serotonin levels fall. Drugs for migraine include the triptans: sumatriptan (Imitrix®), naratriptan (Amerge®), and zolmitriptan (Zomig®). They are called serotonin agonists because they mimic the action of endogenous (natural) serotonin and bind to specific subtypes of serotonin receptors. Ongoing pain research, much of it supported by the NINDS, continues to reveal at an unprecedented pace fascinating insights into how genetics, the immune system, and the skin contribute to pain responses. The explosion of knowledge about human genetics is helping scientists who work in the field of drug development. We know, for example, that the painkilling properties of codeine rely heavily on a liver enzyme, CYP2D6, which helps convert codeine into morphine. A small number of people genetically lack the enzyme CYP2D6; when given codeine, these individuals do not get pain relief. CYP2D6 also helps break down certain other drugs. People who genetically lack CYP2D6 may not be able to cleanse their systems of these

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drugs and may be vulnerable to drug toxicity. CYP2D6 is currently under investigation for its role in pain. In his research, the late John C. Liebeskind, a renowned pain expert and a professor of psychology at UCLA, found that pain can kill by delaying healing and causing cancer to spread. In his pioneering research on the immune system and pain, Dr. Liebeskind studied the effects of stress-such as surgery-on the immune system and in particular on cells called natural killer or NK cells. These cells are thought to help protect the body against tumors. In one study conducted with rats, Dr. Liebeskind found that, following experimental surgery, NK cell activity was suppressed, causing the cancer to spread more rapidly. When the animals were treated with morphine, however, they were able to avoid this reaction to stress. The link between the nervous and immune systems is an important one. Cytokines, a type of protein found in the nervous system, are also part of the body’s immune system, the body’s shield for fighting off disease. Cytokines can trigger pain by promoting inflammation, even in the absence of injury or damage. Certain types of cytokines have been linked to nervous system injury. After trauma, cytokine levels rise in the brain and spinal cord and at the site in the peripheral nervous system where the injury occurred. Improvements in our understanding of the precise role of cytokines in producing pain, especially pain resulting from injury, may lead to new classes of drugs that can block the action of these substances.

What Is the Future of Pain Research? In the forefront of pain research are scientists supported by the National Institutes of Health (NIH), including the NINDS. Other institutes at NIH that support pain research include the National Institute of Dental and Craniofacial Research, the National Cancer Institute, the National Institute of Nursing Research, the National Institute on Drug Abuse, and the National Institute of Mental Health. Developing better pain treatments is the primary goal of all pain research being conducted by these institutes. Some pain medications dull the patient’s perception of pain. Morphine is one such drug. It works through the body’s natural pain-killing machinery, preventing pain messages from reaching the brain. Scientists are working toward the development of a morphine-like drug that will have the paindeadening qualities of morphine but without the drug’s negative side effects, such as sedation and the potential for addiction. Patients receiving morphine also face the problem of morphine tolerance, meaning that over time they

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require higher doses of the drug to achieve the same pain relief. Studies have identified factors that contribute to the development of tolerance; continued progress in this line of research should eventually allow patients to take lower doses of morphine. One objective of investigators working to develop the future generation of pain medications is to take full advantage of the body’s pain “switching center” by formulating compounds that will prevent pain signals from being amplified or stop them altogether. Blocking or interrupting pain signals, especially when there is no injury or trauma to tissue, is an important goal in the development of pain medications. An increased understanding of the basic mechanisms of pain will have profound implications for the development of future medicines. The following areas of research are bringing us closer to an ideal pain drug.

Systems and Imaging The idea of mapping cognitive functions to precise areas of the brain dates back to phrenology, the now archaic practice of studying bumps on the head. Positron emission tomography (PET), functional magnetic resonance imaging (fMRI), and other imaging technologies offer a vivid picture of what is happening in the brain as it processes pain. Using imaging, investigators can now see that pain activates at least three or four key areas of the brain’s cortex-the layer of tissue that covers the brain. Interestingly, when patients undergo hypnosis so that the unpleasantness of a painful stimulus is not experienced, activity in some, but not all, brain areas is reduced. This emphasizes that the experience of pain involves a strong emotional component as well as the sensory experience, namely the intensity of the stimulus.

Channels The frontier in the search for new drug targets is represented by channels. Channels are gate-like passages found along the membranes of cells that allow electrically charged chemical particles called ions to pass into the cells. Ion channels are important for transmitting signals through the nerve’s membrane. The possibility now exists for developing new classes of drugs, including pain cocktails that would act at the site of channel activity.

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Trophic Factors A class of “rescuer” or “restorer” drugs may emerge from our growing knowledge of trophic factors, natural chemical substances found in the human body that affect the survival and function of cells. Trophic factors also promote cell death, but little is known about how something beneficial can become harmful. Investigators have observed that an over-accumulation of certain trophic factors in the nerve cells of animals results in heightened pain sensitivity, and that some receptors found on cells respond to trophic factors and interact with each other. These receptors may provide targets for new pain therapies.

Molecular Genetics Certain genetic mutations can change pain sensitivity and behavioral responses to pain. People born genetically insensate to pain-that is, individuals who cannot feel pain-have a mutation in part of a gene that plays a role in cell survival. Using “knockout” animal models-animals genetically engineered to lack a certain gene-scientists are able to visualize how mutations in genes cause animals to become anxious, make noise, rear, freeze, or become hypervigilant. These genetic mutations cause a disruption or alteration in the processing of pain information as it leaves the spinal cord and travels to the brain. Knockout animals can be used to complement efforts aimed at developing new drugs.

Plasticity Following injury, the nervous system undergoes a tremendous reorganization. This phenomenon is known as plasticity. For example, the spinal cord is “rewired” following trauma as nerve cell axons make new contacts, a phenomenon known as “sprouting.” This in turn disrupts the cells’ supply of trophic factors. Scientists can now identify and study the changes that occur during the processing of pain. For example, using a technique called polymerase chain reaction, abbreviated PCR, scientists can study the genes that are induced by injury and persistent pain. There is evidence that the proteins that are ultimately synthesized by these genes may be targets for new therapies. The dramatic changes that occur with injury and persistent pain underscore that chronic pain should be considered a disease of the nervous system, not just prolonged acute pain or a symptom of an injury. Thus, scientists hope that therapies directed at preventing the

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long-term changes that occur in the nervous system will prevent the development of chronic pain conditions.

Neurotransmitters Just as mutations in genes may affect behavior, they may also affect a number of neurotransmitters involved in the control of pain. Using sophisticated imaging technologies, investigators can now visualize what is happening chemically in the spinal cord. From this work, new therapies may emerge, therapies that can help reduce or obliterate severe or chronic pain.

Hope for the Future Thousands of years ago, ancient peoples attributed pain to spirits and treated it with mysticism and incantations. Over the centuries, science has provided us with a remarkable ability to understand and control pain with medications, surgery, and other treatments. Today, scientists understand a great deal about the causes and mechanisms of pain, and research has produced dramatic improvements in the diagnosis and treatment of a number of painful disorders. For people who fight every day against the limitations imposed by pain, the work of NINDS-supported scientists holds the promise of an even greater understanding of pain in the coming years. Their research offers a powerful weapon in the battle to prolong and improve the lives of people with pain: hope.

Spine Basics: The Vertebrae, Discs, and Spinal Cord Stacked on top of one another in the spine are more than 30 bones, the vertebrae, which together form the spine. They are divided into four regions: ·

7 cervical or neck vertebrae (labeled C1-C7),

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12 thoracic or upper back vertebrae (labeled T1-T12),

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5 lumbar vertebrae (labeled L1-L5), which we know as the lower back, and

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Sacrum and coccyx, a group of bones fused together at the base of the spine.

The vertebrae are linked by ligaments, tendons, and muscles. Back pain can occur when, for example, someone lifts something too heavy, causing a

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sprain, pull, strain, or spasm in one of these muscles or ligaments in the back. Between the vertebrae are round, spongy pads of cartilage called discs that act much like shock absorbers. In many cases, degeneration or pressure from overexertion can cause a disc to shift or protrude and bulge, causing pressure on a nerve and resultant pain. When this happens, the condition is called a slipped, bulging, herniated, or ruptured disc, and it sometimes results in permanent nerve damage. The column-like spinal cord is divided into segments similar to the corresponding vertebrae: cervical, thoracic, lumbar, sacral, and coccygeal. The cord also has nerve roots and rootlets which form branch-like appendages leading from its ventral side (that is, the front of the body) and from its dorsal side (that is, the back of the body). Along the dorsal root are the cells of the dorsal root ganglia, which are critical in the transmission of “pain” messages from the cord to the brain. It is here where injury, damage, and trauma become pain.

The Nervous Systems The central nervous system (CNS) refers to the brain and spinal cord together. The peripheral nervous system refers to the cervical, thoracic, lumbar, and sacral nerve trunks leading away from the spine to the limbs. Messages related to function (such as movement) or dysfunction (such as pain) travel from the brain to the spinal cord and from there to other regions in the body and back to the brain again. The autonomic nervous system controls involuntary functions in the body, like perspiration, blood pressure, heart rate, or heart beat. It is divided into the sympathetic and parasympathetic nervous systems. The sympathetic and parasympathetic nervous systems have links to important organs and systems in the body; for example, the sympathetic nervous system controls the heart, blood vessels, and respiratory system, while the parasympathetic nervous system controls our ability to sleep, eat, and digest food. The peripheral nervous system also includes 12 pairs of cranial nerves located on the underside of the brain. Most relay messages of a sensory nature. They include the olfactory (I), optic (II), oculomotor (III), trochlear (IV), trigeminal (V), abducens (VI), facial (VII), vestibulocochlear (VIII), glossopharyngeal (IX), vagus (X), accessory (XI), and hypoglossal (XII) nerves. Neuralgia, as in trigeminal neuralgia, is a term that refers to pain that

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arises from abnormal activity of a nerve trunk or its branches. The type and severity of pain associated with neuralgia vary widely.

Phantom Pain: How Does the Brain Feel? Sometimes, when a limb is removed during an amputation, an individual will continue to have an internal sense of the lost limb. This phenomenon is known as phantom limb and accounts describing it date back to the 1800s. Similarly, many amputees are frequently aware of severe pain in the absent limb. Their pain is real and is often accompanied by other health problems, such as depression. What causes this phenomenon? Scientists believe that following amputation, nerve cells “rewire” themselves and continue to receive messages, resulting in a remapping of the brain’s circuitry. The brain’s ability to restructure itself, to change and adapt following injury, is called plasticity. Our understanding of phantom pain has improved tremendously in recent years. Investigators previously believed that brain cells affected by amputation simply died off. They attributed sensations of pain at the site of the amputation to irritation of nerves located near the limb stump. Now, using imaging techniques such as positron emission tomography (PET) and magnetic resonance imaging (MRI), scientists can actually visualize increased activity in the brain’s cortex when an individual feels phantom pain. When study participants move the stump of an amputated limb, neurons in the brain remain dynamic and excitable. Surprisingly, the brain’s cells can be stimulated by other body parts, often those located closest to the missing limb. Treatments for phantom pain may include analgesics, anticonvulsants, and other types of drugs; nerve blocks; electrical stimulation; psychological counseling, biofeedback, hypnosis, and acupuncture; and, in rare instances, surgery.

Chili Peppers, Capsaicin, and Pain The hot feeling, red face, and watery eyes you experience when you bite into a red chili pepper may make you reach for a cold drink, but that reaction has also given scientists important information about pain. The chemical found in chili peppers that causes those feelings is capsaicin (pronounced cap-SAY-

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sin), and it works its unique magic by grabbing onto receptors scattered along the surface of sensitive nerve cells in the mouth. In 1997, scientists at the University of California at San Francisco discovered a gene for a capsaicin receptor, called the vanilloid receptor. Once in contact with capsaicin, vanilloid receptors open and pain signals are sent from the peripheral nociceptor and through central nervous system circuits to the brain. Investigators have also learned that this receptor plays a role in the burning type of pain commonly associated with heat, such as the kind you experience when you touch your finger to a hot stove. The vanilloid receptor functions as a sort of “ouch gateway,” enabling us to detect burning hot pain, whether it originates from a 3-alarm habanera chili or from a stove burner. Capsaicin is currently available as a prescription or over-the-counter cream for the treatment of a number of pain conditions, such as shingles. It works by reducing the amount of substance P found in nerve endings and interferes with the transmission of pain signals to the brain. Individuals can become desensitized to the compound, however, perhaps because of longterm damage to nerve tissue. Some individuals find the burning sensation they experience when using capsaicin cream to be intolerable, especially when they are already suffering from a painful condition, such as postherpetic neuralgia. Soon, however, better treatments that relieve pain by blocking vanilloid receptors may arrive in drugstores.

Marijuana As a painkiller, marijuana or, by its Latin name, cannabis, continues to remain highly controversial. In the eyes of many individuals campaigning on its behalf, marijuana rightfully belongs with other pain remedies. In fact, for many years, it was sold under highly controlled conditions in cigarette form by the Federal government for just that purpose. In 1997, the National Institutes of Health held a workshop to discuss research on the possible therapeutic uses for smoked marijuana. Panel members from a number of fields reviewed published research and heard presentations from pain experts. The panel members concluded that, because there are too few scientific studies to prove marijuana’s therapeutic utility for certain conditions, additional research is needed. There is evidence, however, that receptors to which marijuana binds are found in many brain regions that process information that can produce pain.

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Nerve Blocks Nerve blocks may involve local anesthesia, regional anesthesia or analgesia, or surgery; dentists routinely use them for traditional dental procedures. Nerve blocks can also be used to prevent or even diagnose pain. In the case of a local nerve block, any one of a number of local anesthetics may be used; the names of these compounds, such as lidocaine or novocaine, usually have an aine ending. Regional blocks affect a larger area of the body. Nerve blocks may also take the form of what is commonly called an epidural, in which a drug is administered into the space between the spine’s protective covering (the dura) and the spinal column. This procedure is most well known for its use during childbirth. Morphine and methadone are opioid narcotics (such drugs end in ine or one) that are sometimes used for regional analgesia and are administered as an injection. Neurolytic blocks employ injection of chemical agents such as alcohol, phenol, or glycerol to block pain messages and are most often used to treat cancer pain or to block pain in the cranial nerves. In some cases, a drug called guanethidine is administered intravenously in order to accomplish the block. Surgical blocks are performed on cranial, peripheral, or sympathetic nerves. They are most often done to relieve the pain of cancer and extreme facial pain, such as that experienced with trigeminal neuralgia. There are several different types of surgical nerve blocks and they are not without problems and complications. Nerve blocks can cause muscle paralysis and, in many cases, result in at least partial numbness. For that reason, the procedure should be reserved for a select group of patients and should only be performed by skilled surgeons. Types of surgical nerve blocks include: ·

Neurectomy (including peripheral neurectomy) in which a damaged peripheral nerve is destroyed.

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Spinal dorsal rhizotomy in which the surgeon cuts the root or rootlets of one or more of the nerves radiating from the spine. Other rhizotomy procedures include cranial rhizotomy and trigeminal rhizotomy, performed as a treatment for extreme facial pain or for the pain of cancer.

·

Sympathectomy, also called sympathetic blockade, in which a drug or an agent such as guanethidine is used to eliminate pain in a specific area (a limb, for example). The procedure is also done for cardiac pain, vascular disease pain, the pain of reflex sympathetic dystrophy syndrome, and other conditions. The term takes its name from the sympathetic nervous

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system and may involve, for example, cutting a nerve that controls contraction of one or more arteries.

Information Resources The National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health, is the leading federal supporter of research on brain and nervous system disorders. The Institute also sponsors an active public information program that offers information about diagnosis, treatment, and research on painful neurological disorders. For information on pain research supported by the Institute, or information on other neurological disorders, write to the Institute’s Brain Resources and Information Network (BRAIN) at: BRAIN P.O. Box 5801 Bethesda, MD 20824 301-496-5751 800-352-9424 http://www.ninds.nih.gov Additional information about pain research supported by the NIH may be obtained from: Public Information and Liaison Branch National Institute of Dental and Craniofacial Research National Institutes of Health Building 45, Room 4AS19 Bethesda, MD 20892-6400 301-496-4261 http://www.nidcr.nih.gov A number of private organizations offer a variety of services and information that can help those affected by pain. They include: American Chronic Pain Association P.O. Box 850 Rocklin, CA 95677-0850 916-632-0922 http://www.theacpa.org Self-help organization that offers educational materials and peer support groups. They emphasize positive approaches to coping with chronic pain. They will be launching a national pain awareness campaign in 2002.

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American Pain Foundation 201 North Charles Street, Suite 710 Baltimore, MD 21201 410-783-7292 888-615-PAIN (7246) http://www.painfoundation.org Independent non-profit information, education and advocacy organization serving people with pain. Raises public awareness, provides practical information, promotes research, and works to remove barriers and increase access to effective pain management. Arthritis Foundation 1330 West Peachtree Street P.O. Box 7669 Atlanta, GA 30309 404-965-7100 800-283-7800 http://www.arthritis.org Volunteer-driven organization that works to improve lives through leadership in the prevention, control, and cure of arthritis and related diseases. Offers free brochures on various types of arthritis, treatment options, and management of daily activities when affected. National Chronic Pain Outreach Association P.O. Box 274 Millboro, VA 24460 540-862-9437 [email protected] Non-profit organization which serves as a clearinghouse of information about chronic pain for pain sufferers, their physicians, other health care professionals, and the public. National Foundation for the Treatment of Pain 1330 Skyline Drive, Suite #21 Monterey, CA 93940 831-655-8812 http://www.paincare.org Not-for-profit organization dedicated to providing support for patients who are suffering from intractable pain, their families, friends, and the physicians who treat them. Offers a patient forum, advocacy programs, information, support resources, and direct medical intervention.

Online Glossaries 169

ONLINE GLOSSARIES The Internet provides access to a number of free-to-use medical dictionaries and glossaries. The National Library of Medicine has compiled the following list of online dictionaries: ·

ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference: http://www.nlm.nih.gov/medlineplus/encyclopedia.html

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MedicineNet.com Medical Dictionary (MedicineNet, Inc.): http://www.medterms.com/Script/Main/hp.asp

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Merriam-Webster Medical Dictionary (Inteli-Health, Inc.): http://www.intelihealth.com/IH/

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Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish: http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html

·

On-line Medical Dictionary (CancerWEB): http://www.graylab.ac.uk/omd/

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Technology Glossary (National Library of Medicine) - Health Care Technology: http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm

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Terms and Definitions (Office of Rare Diseases): http://rarediseases.info.nih.gov/ord/glossary_a-e.html

Beyond these, MEDLINEplus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.). The ADAM Medical Encyclopedia Web site address is http://www.nlm.nih.gov/medlineplus/encyclopedia.html. ADAM is also available on commercial Web sites such as drkoop.com (http://www.drkoop.com/) and Web MD (http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions and concepts will be useful in more advanced areas of research. You may choose to print various pages specifically relating to reflex sympathetic dystrophy syndrome and keep them on file.

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Online Dictionary Directories The following are additional online directories compiled by the National Library of Medicine, including a number of specialized medical dictionaries and glossaries: ·

Medical Dictionaries: Medical & Biological (World Health Organization): http://www.who.int/hlt/virtuallibrary/English/diction.htm#Medical

·

MEL-Michigan Electronic Library List of Online Health and Medical Dictionaries (Michigan Electronic Library): http://mel.lib.mi.us/health/health-dictionaries.html

·

Patient Education: Glossaries (DMOZ Open Directory Project): http://dmoz.org/Health/Education/Patient_Education/Glossaries/

·

Web of Online Dictionaries (Bucknell University): http://www.yourdictionary.com/diction5.html#medicine

Glossary 171

REFLEX SYMPATHETIC DYSTROPHY SYNDROME GLOSSARY The following is a complete glossary of terms used in this sourcebook. The definitions are derived from official public sources including the National Institutes of Health [NIH] and the European Union [EU]. After this glossary, we list a number of additional hardbound and electronic glossaries and dictionaries that you may wish to consult. Acetaminophen: Analgesic antipyretic derivative of acetanilide. It has weak anti-inflammatory properties and is used as a common analgesic, but may cause liver, blood cell, and kidney damage. [NIH] Acetylcholine: A neurotransmitter. Acetylcholine in vertebrates is the major transmitter at neuromuscular junctions, autonomic ganglia, parasympathetic effector junctions, a subset of sympathetic effector junctions, and at many sites in the central nervous system. It is generally not used as an administered drug because it is broken down very rapidly by cholinesterases, but it is useful in some ophthalmological applications. [NIH] Adrenergic: Activated by, characteristic of, or secreting epinephrine or substances with similar activity; the term is applied to those nerve fibres that liberate norepinephrine at a synapse when a nerve impulse passes, i.e., the sympathetic fibres. [EU] Aerobic: 1. having molecular oxygen present. 2. growing, living, or occurring in the presence of molecular oxygen. 3. requiring oxygen for respiration. [EU] Agonist: In anatomy, a prime mover. In pharmacology, a drug that has affinity for and stimulates physiologic activity at cell receptors normally stimulated by naturally occurring substances. [EU] Anaesthesia: Loss of feeling or sensation. Although the term is used for loss of tactile sensibility, or of any of the other senses, it is applied especially to loss of the sensation of pain, as it is induced to permit performance of surgery or other painful procedures. [EU] Analgesic: An agent that alleviates pain without causing loss of consciousness. [EU] Anesthesia: A state characterized by loss of feeling or sensation. This depression of nerve function is usually the result of pharmacologic action and is induced to allow performance of surgery or other painful procedures. [NIH]

Anesthesiology: A specialty concerned with the study of anesthetics and

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anesthesia. [NIH] Anesthetics: Agents that are capable of inducing a total or partial loss of sensation, especially tactile sensation and pain. They may act to induce general anesthesia, in which an unconscious state is achieved, or may act locally to induce numbness or lack of sensation at a targeted site. [NIH] Ankle: That part of the lower limb directly above the foot. [NIH] Anticonvulsant: An agent that prevents or relieves convulsions. [EU] Antidepressant: An agent that stimulates the mood of a depressed patient, including tricyclic antidepressants and monoamine oxidase inhibitors. [EU] Antiepileptic: An agent that combats epilepsy. [EU] Antiviral: Destroying viruses or suppressing their replication. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Arteries: The vessels carrying blood away from the heart. [NIH] Atrophy: A wasting away; a diminution in the size of a cell, tissue, organ, or part. [EU] Autonomic: Self-controlling; functionally independent. [EU] Axons: Nerve fibers that are capable of rapidly conducting impulses away from the neuron cell body. [NIH] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Benign: Not malignant; not recurrent; favourable for recovery. [EU] Benzodiazepines: A two-ring heterocyclic compound consisting of a benzene ring fused to a diazepine ring. Permitted is any degree of hydrogenation, any substituents and any H-isomer. [NIH] Bursitis: Inflammation of a bursa, occasionally accompanied by a calcific deposit in the underlying supraspinatus tendon; the most common site is the subdeltoid bursa. [EU] Butorphanol: A synthetic morphinan analgesic with narcotic antagonist action. It is used in the management of severe pain. [NIH] Cannabis: The hemp plant Cannabis sativa. Products prepared from the dried flowering tops of the plant include marijuana, hashish, bhang, and ganja. [NIH]

Glossary 173

Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbamazepine: An anticonvulsant used to control grand mal and psychomotor or focal seizures. Its mode of action is not fully understood, but some of its actions resemble those of phenytoin; although there is little chemical resemblance between the two compounds, their three-dimensional structure is similar. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cardiac: Pertaining to the heart. [EU] Cardiology: The study of the heart, its physiology, and its functions. [NIH] Cardiovascular: Pertaining to the heart and blood vessels. [EU] Cerebellum: Part of the metencephalon that lies in the posterior cranial fossa behind the brain stem. It is concerned with the coordination of movement. [NIH] Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Cervical: Pertaining to the neck, or to the neck of any organ or structure. [EU] Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Chronic: Persisting over a long period of time. [EU] Chymopapain: A cysteine endopeptidase isolated from papaya latex. Preferential cleavage at glutamic and aspartic acid residues. EC 3.4.22.6. [NIH] Civilization: The distinctly human attributes and attainments of a particular society. [NIH] Cocaine: An alkaloid ester extracted from the leaves of plants including coca. It is a local anesthetic and vasoconstrictor and is clinically used for that purpose, particularly in the eye, ear, nose, and throat. It also has powerful central nervous system effects similar to the amphetamines and is a drug of abuse. Cocaine, like amphetamines, acts by multiple mechanisms on brain catecholaminergic neurons; the mechanism of its reinforcing effects is thought to involve inhibition of dopamine uptake. [NIH] Codeine: An opioid analgesic related to morphine but with less potent

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analgesic properties and mild sedative effects. It also acts centrally to suppress cough. [NIH] Conduction: The transfer of sound waves, heat, nervous impulses, or electricity. [EU] Consciousness: Sense of awareness of self and of the environment. [NIH] Constipation: Infrequent or difficult evacuation of the faeces. [EU] Constriction: The act of constricting. [NIH] Coronary: Encircling in the manner of a crown; a term applied to vessels; nerves, ligaments, etc. The term usually denotes the arteries that supply the heart muscle and, by extension, a pathologic involvement of them. [EU] Cortex: The outer layer of an organ or other body structure, as distinguished from the internal substance. [EU] Cranial: Pertaining to the cranium, or to the anterior (in animals) or superior (in humans) end of the body. [EU] Curative: Tending to overcome disease and promote recovery. [EU] Cyst: Any closed cavity or sac; normal or abnormal, lined by epithelium, and especially one that contains a liquid or semisolid material. [EU] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Desensitization: The prevention or reduction of immediate hypersensitivity reactions by administration of graded doses of allergen; called also hyposensitization and immunotherapy. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Dislocation: The displacement of any part, more especially of a bone. Called also luxation. [EU] Dorsal: 1. pertaining to the back or to any dorsum. 2. denoting a position more toward the back surface than some other object of reference; same as posterior in human anatomy; superior in the anatomy of quadrupeds. [EU] Dystrophy: Any disorder arising from defective or faulty nutrition, especially the muscular dystrophies. [EU]

Glossary 175

Electromyography: Recording of the changes in electric potential of muscle by means of surface or needle electrodes. [NIH] Endogenous: Developing or originating within the organisms or arising from causes within the organism. [EU] Endorphins: One of the three major groups of endogenous opioid peptides. They are large peptides derived from the pro-opiomelanocortin precursor. The known members of this group are alpha-, beta-, and gamma-endorphin. The term endorphin is also sometimes used to refer to all opioid peptides, but the narrower sense is used here; opioid peptides is used for the broader group. [NIH] Enkephalins: One of the three major families of endogenous opioid peptides. The enkephalins are pentapeptides that are widespread in the central and peripheral nervous systems and in the adrenal medulla. [NIH] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Epidural: Situated upon or outside the dura mater. [EU] Extraction: The process or act of pulling or drawing out. [EU] Extremity: A limb; an arm or leg (membrum); sometimes applied specifically to a hand or foot. [EU] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Ganglia: Clusters of multipolar neurons surrounded by a capsule of loosely organized connective tissue located outside the central nervous system. [NIH] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Glycerol: A trihydroxy sugar alcohol that is an intermediate in carbohydrate and lipid metabolism. It is used as a solvent, emollient, pharmaceutical agent, and sweetening agent. [NIH] Gout: Hereditary metabolic disorder characterized by recurrent acute arthritis, hyperuricemia and deposition of sodium urate in and around the joints, sometimes with formation of uric acid calculi. [NIH] Guanethidine: An antihypertensive agent that acts by inhibiting selectively transmission in post-ganglionic adrenergic nerves. It is believed to act

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mainly by preventing the release of norepinephrine at nerve endings and causes depletion of norepinephrine in peripheral sympathetic nerve terminals as well as in tissues. [NIH] Hemiplegia: Paralysis of one side of the body. [EU] Herpes: Any inflammatory skin disease caused by a herpesvirus and characterized by the formation of clusters of small vesicles. When used alone, the term may refer to herpes simplex or to herpes zoster. [EU] Histamine: 1H-Imidazole-4-ethanamine. A depressor amine derived by enzymatic decarboxylation of histidine. It is a powerful stimulant of gastric secretion, a constrictor of bronchial smooth muscle, a vasodilator, and also a centrally acting neurotransmitter. [NIH] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH] Hyperostosis: Hypertrophy of bone; exostosis. [EU] Hypersensitivity: A state of altered reactivity in which the body reacts with an exaggerated immune response to a foreign substance. Hypersensitivity reactions are classified as immediate or delayed, types I and IV, respectively, in the Gell and Coombs classification (q.v.) of immune responses. [EU] Ibuprofen: A nonsteroidal anti-inflammatory agent with analgesic properties used in the therapy of rheumatism and arthritis. [NIH] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Innervation: 1. the distribution or supply of nerves to a part. 2. the supply of nervous energy or of nerve stimulus sent to a part. [EU] Intermittent: Occurring at separated intervals; having periods of cessation of activity. [EU] Intestinal: Pertaining to the intestine. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]

Glossary 177

Ischemia: Deficiency of blood in a part, due to functional constriction or actual obstruction of a blood vessel. [EU] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Lethal: Deadly, fatal. [EU] Lidocaine: A local anesthetic and cardiac depressant used as an antiarrhythmia agent. Its actions are more intense and its effects more prolonged than those of procaine but its duration of action is shorter than that of bupivacaine or prilocaine. [NIH] Ligament: A band of fibrous tissue that connects bones or cartilages, serving to support and strengthen joints. [EU] Lithium: Lithium. An element in the alkali metals family. It has the atomic symbol Li, atomic number 3, and atomic weight 6.94. Salts of lithium are used in treating manic-depressive disorders. [NIH] Locomotor: Of or pertaining to locomotion; pertaining to or affecting the locomotive apparatus of the body. [EU] Lumbar: Pertaining to the loins, the part of the back between the thorax and the pelvis. [EU] Lupus: A form of cutaneous tuberculosis. It is seen predominantly in women and typically involves the nasal, buccal, and conjunctival mucosa. [NIH]

Membrane: A thin layer of tissue which covers a surface, lines a cavity or divides a space or organ. [EU] Midazolam: A short-acting compound, water-soluble at pH less than 4 and lipid-soluble at physiological pH. It is a hypnotic-sedative drug with anxiolytic and amnestic properties. It is used for sedation in dentistry, cardiac surgery, endoscopic procedures, as preanesthetic medication, and as an adjunct to local anesthesia. Because of its short duration and cardiorespiratory stability, it is particularly useful in poor-risk, elderly, and cardiac patients. [NIH] Mobility: Capability of movement, of being moved, or of flowing freely. [EU] Mobilization: The process of making a fixed part or stored substance mobile, as by separating a part from surrounding structures to make it accessible for an operative procedure or by causing release into the circulation for body use of a substance stored in the body. [EU] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Morphine: The principal alkaloid in opium and the prototype opiate analgesic and narcotic. Morphine has widespread effects in the central nervous system and on smooth muscle. [NIH]

178 Reflex Sympathetic Dystrophy Syndrome

Mysticism: A philosophy based upon spiritual intuition that is believed to transcend ordinary sensory experiences or understanding. [NIH] Nalbuphine: A narcotic used as a pain medication. It appears to be an agonist at kappa opioid receptors and an antagonist or partial agonist at mu opioid receptors. [NIH] Narcotic: 1. pertaining to or producing narcosis. 2. an agent that produces insensibility or stupor, applied especially to the opioids, i.e. to any natural or synthetic drug that has morphine-like actions. [EU] Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Neuralgia: Paroxysmal pain which extends along the course of one or more nerves. Many varieties of neuralgia are distinguished according to the part affected or to the cause, as brachial, facial, occipital, supraorbital, etc., or anaemic, diabetic, gouty, malarial, syphilitic, etc. [EU] Neuroanatomy: Study of the anatomy of the nervous system as a specialty or discipline. [NIH] Neuroleptic: A term coined to refer to the effects on cognition and behaviour of antipsychotic drugs, which produce a state of apathy, lack of initiative, and limited range of emotion and in psychotic patients cause a reduction in confusion and agitation and normalization of psychomotor activity. [EU] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neuromuscular: Pertaining to muscles and nerves. [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the nervous system. [NIH] Neuropathy: A general term denoting functional disturbances and/or pathological changes in the peripheral nervous system. The etiology may be known e.g. arsenical n., diabetic n., ischemic n., traumatic n.) or unknown. Encephalopathy and myelopathy are corresponding terms relating to involvement of the brain and spinal cord, respectively. The term is also used to designate noninflammatory lesions in the peripheral nervous system, in contrast to inflammatory lesions (neuritis). [EU] Neurotransmitter: Any of a group of substances that are released on excitation from the axon terminal of a presynaptic neuron of the central or peripheral nervous system and travel across the synaptic cleft to either excite or inhibit the target cell. Among the many substances that have the

Glossary 179

properties of a neurotransmitter are acetylcholine, norepinephrine, epinephrine, dopamine, glycine, y-aminobutyrate, glutamic acid, substance P, enkephalins, endorphins, and serotonin. [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Nicotine: Nicotine is highly toxic alkaloid. It is the prototypical agonist at nicotinic cholinergic receptors where it dramatically stimulates neurons and ultimately blocks synaptic transmission. Nicotine is also important medically because of its presence in tobacco smoke. [NIH] Nociceptors: Peripheral receptors for pain. Nociceptors include receptors which are sensitive to painful mechanical stimuli, extreme heat or cold, and chemical stimuli. All nociceptors are free nerve endings. [NIH] Norepinephrine: Precursor of epinephrine that is secreted by the adrenal medulla and is a widespread central and autonomic neurotransmitter. Norepinephrine is the principal transmitter of most postganglionic sympathetic fibers and of the diffuse projection system in the brain arising from the locus ceruleus. It is also found in plants and is used pharmacologically as a sympathomimetic. [NIH] Opiate: A remedy containing or derived from opium; also any drug that induces sleep. [EU] Opium: The air-dried exudate from the unripe seed capsule of the opium poppy, Papaver somniferum, or its variant, P. album. It contains a number of alkaloids, but only a few - morphine, codeine, and papaverine - have clinical significance. Opium has been used as an analgesic, antitussive, antidiarrheal, and antispasmodic. [NIH] Oral: Pertaining to the mouth, taken through or applied in the mouth, as an oral medication or an oral thermometer. [EU] Orthopaedic: Pertaining to the correction of deformities of the musculoskeletal system; pertaining to orthopaedics. [EU] Orthopedics: A surgical specialty which utilizes medical, surgical, and physical methods to treat and correct deformities, diseases, and injuries to the skeletal system, its articulations, and associated structures. [NIH] Osteoarthritis: Noninflammatory degenerative joint disease occurring chiefly in older persons, characterized by degeneration of the articular cartilage, hypertrophy of bone at the margins, and changes in the synovial membrane. It is accompanied by pain and stiffness, particularly after prolonged activity. [EU] Osteomyelitis: Inflammation of bone caused by a pyogenic organism. It

180 Reflex Sympathetic Dystrophy Syndrome

may remain localized or may spread through the bone to involve the marrow, cortex, cancellous tissue, and periosteum. [EU] Osteoporosis: Reduction in the amount of bone mass, leading to fractures after minimal trauma. [EU] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Palpation: Application of fingers with light pressure to the surface of the body to determine consistence of parts beneath in physical diagnosis; includes palpation for determining the outlines of organs. [NIH] Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU] Particle: A tiny mass of material. [EU] Perfusion: 1. the act of pouring over or through, especially the passage of a fluid through the vessels of a specific organ. 2. a liquid poured over or through an organ or tissue. [EU] Perspiration: Sweating; the functional secretion of sweat. [EU] Placebos: Any dummy medication or treatment. Although placebos originally were medicinal preparations having no specific pharmacological activity against a targeted condition, the concept has been extended to include treatments or procedures, especially those administered to control groups in clinical trials in order to provide baseline measurements for the experimental protocol. [NIH] Plexus: A network or tangle; a general term for a network of lymphatic vessels, nerves, or veins. [EU] Postoperative: Occurring after a surgical operation. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from incidence, which refers to the number of new cases in the population at a given time. [NIH] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Prolapse: 1. the falling down, or sinking, of a part or viscus; procidentia. 2.

Glossary 181

to undergo such displacement. [EU] Prostaglandins: A group of compounds derived from unsaturated 20carbon fatty acids, primarily arachidonic acid, via the cyclooxygenase pathway. They are extremely potent mediators of a diverse group of physiological processes. [NIH] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]

Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Psychology: The science dealing with the study of mental processes and behavior in man and animals. [NIH] Psychotropic: Exerting an effect upon the mind; capable of modifying mental activity; usually applied to drugs that effect the mental state. [EU] Pulse: The rhythmical expansion and contraction of an artery produced by waves of pressure caused by the ejection of blood from the left ventricle of the heart as it contracts. [NIH] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Reflex: 1; reflected. 2. a reflected action or movement; the sum total of any particular involuntary activity. [EU] Relaxant: 1. lessening or reducing tension. 2. an agent that lessens tension. [EU]

Remission: A diminution or abatement of the symptoms of a disease; also the period during which such diminution occurs. [EU] Rheumatoid: Resembling rheumatism. [EU] Rheumatology: A subspecialty of internal medicine concerned with the study of inflammatory or degenerative processes and metabolic derangement of connective tissue structures which pertain to a variety of musculoskeletal disorders, such as arthritis. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Saline: Salty; of the nature of a salt; containing a salt or salts. [EU]

182 Reflex Sympathetic Dystrophy Syndrome

Sciatica: A syndrome characterized by pain radiating from the back into the buttock and into the lower extremity along its posterior or lateral aspect, and most commonly caused by prolapse of the intervertebral disk; the term is also used to refer to pain anywhere along the course of the sciatic nerve. [EU] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Sedative: 1. allaying activity and excitement. 2. an agent that allays excitement. [EU] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Septic: Produced by or due to decomposition by microorganisms; putrefactive. [EU] Spasticity: A state of hypertonicity, or increase over the normal tone of a muscle, with heightened deep tendon reflexes. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Spondylitis: Inflammation of the vertebrae. [EU] Spondylolisthesis: Forward displacement of one vertebra over another. [NIH] Stenosis: Narrowing or stricture of a duct or canal. [EU] Stimulant: 1. producing stimulation; especially producing stimulation by causing tension on muscle fibre through the nervous tissue. 2. an agent or remedy that produces stimulation. [EU] Stomach: An organ of digestion situated in the left upper quadrant of the abdomen between the termination of the esophagus and the beginning of the duodenum. [NIH] Sumatriptan: A serotonin agonist that acts selectively at 5HT1 receptors. It is used in the treatment of migraines. [NIH] Sunburn: An injury to the skin causing erythema, tenderness, and sometimes blistering and resulting from excessive exposure to the sun. The reaction is produced by the ultraviolet radiation in sunlight. [NIH] Sympathectomy: The removal or interruption of some part of the sympathetic nervous system for therapeutic or research purposes. [NIH]

Glossary 183

Systemic: Pertaining to or affecting the body as a whole. [EU] Tachykinins: A family of biologically active peptides sharing a common conserved C-terminal sequence, -Phe-X-Gly-Leu-Met-NH2, where X is either an aromatic or a branched aliphatic amino acid. Members of this family have been found in mammals, amphibians, and mollusks. Tachykinins have diverse pharmacological actions in the central nervous system and the cardiovascular, genitourinary, respiratory, and gastrointestinal systems, as well as in glandular tissues. This diversity of activity is due to the existence of three or more subtypes of tachykinin receptors. [NIH] Tenosynovitis: Inflammation of a tendon sheath. [EU] Thalamus: Either of two large, ovoid masses, consisting chiefly of grey substance, situated one on each side of and forming part of the lateral wall of the third ventricle. It is divided into two major parts : dorsal and ventral, each of which contains many nuclei. [EU] Thermography: Measurement of the regional temperature of the body or an organ by infrared sensing devices, based on self-emanating infrared radiation. [NIH] Thermoregulation: Heat regulation. [EU] Thrombosis: The formation, development, or presence of a thrombus. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU]

Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU] Toxicity: The quality of being poisonous, especially the degree of virulence of a toxic microbe or of a poison. [EU] Transcutaneous: Transdermal. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Trophic: Of or pertaining to nutrition. [EU] Vasculitis: Inflammation of a vessel, angiitis. [EU] Ventral: 1. pertaining to the belly or to any venter. 2. denoting a position more toward the belly surface than some other object of reference; same as anterior in human anatomy. [EU]

184 Reflex Sympathetic Dystrophy Syndrome

General Dictionaries and Glossaries While the above glossary is essentially complete, the dictionaries listed here cover virtually all aspects of medicine, from basic words and phrases to more advanced terms (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·

Dictionary of Medical Acronymns & Abbreviations by Stanley Jablonski (Editor), Paperback, 4th edition (2001), Lippincott Williams & Wilkins Publishers, ISBN: 1560534605, http://www.amazon.com/exec/obidos/ASIN/1560534605/icongroupinterna

·

Dictionary of Medical Terms : For the Nonmedical Person (Dictionary of Medical Terms for the Nonmedical Person, Ed 4) by Mikel A. Rothenberg, M.D, et al, Paperback - 544 pages, 4th edition (2000), Barrons Educational Series, ISBN: 0764112015, http://www.amazon.com/exec/obidos/ASIN/0764112015/icongroupinterna

·

A Dictionary of the History of Medicine by A. Sebastian, CD-Rom edition (2001), CRC Press-Parthenon Publishers, ISBN: 185070368X, http://www.amazon.com/exec/obidos/ASIN/185070368X/icongroupinterna

·

Dorland’s Illustrated Medical Dictionary (Standard Version) by Dorland, et al, Hardcover - 2088 pages, 29th edition (2000), W B Saunders Co, ISBN: 0721662544, http://www.amazon.com/exec/obidos/ASIN/0721662544/icongroupinterna

·

Dorland’s Electronic Medical Dictionary by Dorland, et al, Software, 29th Book & CD-Rom edition (2000), Harcourt Health Sciences, ISBN: 0721694934, http://www.amazon.com/exec/obidos/ASIN/0721694934/icongroupinterna

·

Dorland’s Pocket Medical Dictionary (Dorland’s Pocket Medical Dictionary, 26th Ed) Hardcover - 912 pages, 26th edition (2001), W B Saunders Co, ISBN: 0721682812, http://www.amazon.com/exec/obidos/ASIN/0721682812/icongroupinterna /103-4193558-7304618

·

Melloni’s Illustrated Medical Dictionary (Melloni’s Illustrated Medical Dictionary, 4th Ed) by Melloni, Hardcover, 4th edition (2001), CRC PressParthenon Publishers, ISBN: 85070094X, http://www.amazon.com/exec/obidos/ASIN/85070094X/icongroupinterna

·

Stedman’s Electronic Medical Dictionary Version 5.0 (CD-ROM for Windows and Macintosh, Individual) by Stedmans, CD-ROM edition (2000), Lippincott Williams & Wilkins Publishers, ISBN: 0781726328, http://www.amazon.com/exec/obidos/ASIN/0781726328/icongroupinterna

Glossary 185

·

Stedman’s Medical Dictionary by Thomas Lathrop Stedman, Hardcover 2098 pages, 27th edition (2000), Lippincott, Williams & Wilkins, ISBN: 068340007X, http://www.amazon.com/exec/obidos/ASIN/068340007X/icongroupinterna

·

Tabers Cyclopedic Medical Dictionary (Thumb Index) by Donald Venes (Editor), et al, Hardcover - 2439 pages, 19th edition (2001), F A Davis Co, ISBN: 0803606540, http://www.amazon.com/exec/obidos/ASIN/0803606540/icongroupinterna

186 Reflex Sympathetic Dystrophy Syndrome

INDEX A Acetaminophen....................148, 152, 155 Acetylcholine ...............................157, 179 Adrenergic .....................................13, 175 Aerobic ..................................................50 Agonist.................................178, 179, 182 Analgesic ....114, 148, 157, 171, 172, 173, 176, 177, 179 Anesthesia....46, 113, 140, 145, 166, 172, 177 Anesthetics ..........................113, 166, 171 Ankle......................................................56 Anticonvulsant .....................................173 Antiepileptic .........................................148 Antiviral ................................................145 Anxiety.................................141, 148, 152 Arteries ........................................167, 174 Atrophy ..................11, 12, 14, 40, 99, 101 Autonomic....24, 25, 28, 60, 163, 171, 179 Axons...................................................161 B Bacteria .......................................106, 182 Benign .........................................139, 141 Benzodiazepines .................................148 Bursitis .................................................141 Butorphanol .........................................154 C Cannabis .............................................165 Capsules..............................................109 Carbohydrate...............................108, 175 Cardiac ............................20, 46, 166, 177 Cardiovascular...................58, 59, 60, 183 Cerebral.................................................12 Cervical........................................162, 163 Cholesterol ..................................106, 108 Chronic .....10, 11, 13, 14, 15, 22, 24, 25, 26, 28, 38, 56, 66, 102, 127, 141, 142, 143, 144, 151, 155, 161, 162, 167, 168 Chymopapain ......................................149 Cocaine ...............................................140 Codeine ...............140, 148, 152, 155, 158 Conduction ..........................................147 Consciousness ............................151, 171 Constipation.........................................152 Constriction......................11, 24, 146, 177 Coronary..............................................146 Cortex ....................64, 156, 160, 164, 180 Cranial ...........82, 143, 151, 163, 166, 173 Cues ....................................................155 Curative ...............................114, 152, 179 Cytokines .............................................159

D Degenerative .... 53, 56, 63, 107, 179, 181 Dentists ............................................... 166 Desensitization ..................................... 50 Diarrhea .............................................. 106 Dorsal.... 67, 151, 153, 156, 163, 166, 183 E Electromyography............................... 147 Endogenous................................ 158, 175 Endorphins.......................................... 179 Enkephalins ........................ 157, 175, 179 Enzyme ............................... 149, 158, 175 Epidural....................................... 150, 166 Extraction .............................................. 38 Extremity ........... 11, 13, 61, 100, 102, 182 F Facial ............ 34, 143, 146, 163, 166, 178 Fatigue ........................................ 143, 172 G Gastrointestinal ........... 150, 155, 175, 183 Glycerol............................................... 166 Gout .................................................... 141 Guanethidine ...................................... 166 H Hemiplegia ............................................ 12 Herpes ........................ 112, 114, 145, 176 Histamine .............................................. 60 Hormones ..... 60, 150, 154, 158, 174, 181 Hyperostosis ................................... 56, 62 Hypersensitivity..................... 52, 144, 174 I Ibuprofen............................. 148, 152, 155 Idiopathic......................................... 56, 62 Inflammation ...... 141, 143, 145, 146, 150, 158, 159, 182 Innervation ............................................ 60 Intermittent .......................................... 147 Intestinal.............................................. 106 Ischemia.............................................. 146 L Lesion ........................................... 20, 180 Lethal .................................................. 157 Lidocaine................................. 13, 39, 166 Lithium ........................................ 148, 177 Locomotor ............................................. 57 Lumbar........................ 149, 158, 162, 163 Lupus .................................................. 143 M Membrane..................... 63, 141, 160, 179 Midazolam............................................. 39 Mobility............................................ 11, 12

Index 187

Molecular .............52, 58, 76, 79, 171, 181 Morphine.....111, 140, 150, 152, 155, 157, 158, 159, 178 Mysticism.............................................162 N Nalbuphine ..........................................154 Narcotic ...............114, 152, 172, 177, 178 Neural ..................14, 20, 58, 59, 107, 180 Neuralgia .......34, 40, 143, 144, 145, 148, 153, 163, 165, 166, 178 Neuromuscular ..............................60, 171 Neurons ......67, 153, 157, 164, 173, 175, 179 Neuropathy ..........................................144 Neurotransmitter....63, 156, 171, 176, 179 Niacin...................................................106 Nicotine................................................157 Nociceptors..................................156, 179 Norepinephrine ......19, 157, 171, 176, 179 O Opiate ..................................114, 156, 177 Opium ..........................114, 140, 177, 179 Oral ..........................39, 46, 114, 173, 179 Orthopedics .....................................56, 61 Osteoarthritis ...........................56, 62, 141 Osteomyelitis ...................................56, 62 Osteoporosis .............................12, 56, 62 Overdose .............................................107 P Palpation..................................61, 64, 180 Paralysis ..................12, 20, 143, 166, 180 Perspiration .........................................163 Placebos ......................................152, 180 Plexus ..................................................111 Postoperative.......................................149 Potassium............................................108 Prevalence.............................................61 Progressive....................................11, 141 Prolapse ..............................................182 Proteins .........40, 106, 108, 157, 161, 174 Psychology ..................................154, 159 Psychotropic ........................................148 Pulse....................................................150 Q Quackery .............................................151

R Receptor ............................. 154, 156, 165 Recurrence ........................................... 50 Remission ............................... 13, 53, 181 Rheumatoid............. 56, 62, 141, 143, 152 Riboflavin ............................................ 106 S Saline .................................................. 152 Sciatica ....................................... 142, 145 Sclerosis ............................................. 146 Sedative .................. 39, 46, 152, 174, 177 Selenium ............................................. 108 Septic .............................................. 56, 62 Spasticity............................................. 143 Spectrum............................................. 141 Spondylitis........................................... 141 Stenosis .............................................. 145 Stimulant ....................................... 63, 176 Stomach.............................. 152, 155, 175 Sumatriptan................................. 148, 158 Sunburn .............................................. 156 Sympathectomy ........ 13, 17, 67, 101, 151 Systemic ............................................... 62 T Tachykinins ......................................... 157 Tenosynovitis ...................................... 144 Thalamus ............................ 146, 150, 156 Thermography ...................................... 13 Thrombosis ..................................... 56, 62 Thyroxine ............................................ 108 Tolerance .................................... 154, 159 Tomography................................ 160, 164 Topical ................................ 111, 115, 183 Toxicity................................................ 159 Transcutaneous .............. 13, 17, 101, 150 Transplantation ................................... 158 Trophic ................................................ 161 V Vasculitis............................................. 146 Venous............................................ 56, 62 Ventral......................................... 163, 183 W Walkers ................................................. 61

188 Reflex Sympathetic Dystrophy Syndrome

Index 189

190 Reflex Sympathetic Dystrophy Syndrome