RSDnet.org graphic

Reflex Sympathetic Dystrophy
Frequently Asked Questions

Last updated: October 24, 1997.

The latest copy of this FAQ can always be found at http://www.rsdnet.org/rsdnet-faq.html. It is updated as necessary.

  1. What is RSD?
  2. What are some terms used to describe RSD?
  3. Who gets RSD?
  4. How do you get RSD?
  5. How is RSD diagnosed?
  6. What are the symptoms?
  7. What are the common treatments for RSD?
  8. Is there a cure?
  9. What is the history of RSD? What are sympathetic blocks?
  10. What is a TENS?
  11. Where can I find a glossary explaining RSD terms?
  12. What is the Americans With Disabilities Act?
  13. How does the ADA apply to someone with RSD?
  14. Where can I get a copy of the ADA?
  15. Is there an RSD mailing list on the Internet?
  16. Where can I find out more about RSD?
  17. What is RSDnet.org?

Answers

  1. What is RSD?

    "RSD is a descriptive term meaning a complex disorder or group of disorders that may develop as a consequence of trauma affecting the limbs, with or without an obvious nerve lesion. RSD may also develop after visceral diseases, and central nervous system lesions, or, rarely, without an obvious antecedent event. It consists of pain and related sensory abnormalities, abnormal blood flow and sweating, abnormalities in the motor system and changes in structure of both superficial and deep tissues ("trophic" changes). It is not necessary that all components are present. It is agreed that the name "reflex sympathetic dystrophy" is used in a descriptive sense and does not imply specific underlying mechanisms."
    Janig W, Blumberg H, Boas RA, et.al: The Reflex Sympathetic Dystrophy Syndrome: consensus statement and general recommendations for diagnosis and clinical research. In Bond MR, Charleton JE and Woolf CJ (eds): Proceedings of the VIth World Congress on Pain. Elsevier, Amsterdam, 1991, pp 373-376.

    Reflex Sympathetic Dystrophy is a syndrome of diffuse limb pain often burning in character and usually occurring after an injury or noxious stimulus. RSD is most often found in the hand and shoulder or in the knee and ankle but can be present in any limb. The affected area undergoes various sensory, motor, autonomic or trophic changes.

    RSD is thought of as prolonging the normal sympathetic response to injury. In other words, the sympathetic nervous system over fires. RSD is more likely to occur after relatively minor injuries, than after major injuries. In fact, most people with RSD have suffered from some kind of localized tissue damage, which causes a reflex response from the sympathetic nervous system (that is pain or other sensations). So RSD can occur from an accident, from a response to surgery, from diseases such as visceral diseases, neurologic diseases, infections, vascular diseases, musculoskeletal disorders and tumors, and it can also occur from unknown origins.

    RSD is believed to occur in three stages, each with a distinct set of symptoms and characteristics. While there is some debate about when each stage engages, most evidence indicates that the earlier RSD is diagnosed and treated, the higher the chances are for reversal.

  2. What are some terms used to describe RSD?
    This is just a small sampling of terms that are used to describe this disorder. A more comprehensive list can be found at http://www.rsdnet.org/RSDTerms.html

    Acute Atrophy of the Bone Causalgia Neurodystrophy Post-Traumatic Pain Syndrome Sudeck's Atrophy
    Algodystrophy Mineures Chronic Traumatic Edema Pain-Dysfunction Syndrome Reflex Neurovascular Dystrophy Sympathalgia
    Algodystrophy Reflexes Complex Regional Pain Syndrome I (CRPS I) Post-Traumatic Dystrophy Reflex Sympathetic Dystrophy
    RSD    		 Sympathetic Overdrive Syndrome
    Algodystrophy Minor Causalgia Post-Traumatic Osteoporosis Shoulder Hand Syndrome Traumatic Vasospasm

  3. Who gets RSD?

    Anyone. RSD can affect anyone at any age at any time.

  4. How do you get RSD?

    RSD is thought of as prolonging the normal sympathetic response to injury. In other words, the sympathetic nervous system over fires. RSD is more likely to occur after relatively minor injuries, than after major injuries. In fact, most people with RSD have suffered from some kind of localized tissue damage, which causes a reflex response from the sympathetic nervous system (that is pain or other sensations). So RSD can occur from an accident, from a response to surgery, from diseases such as visceral diseases, neurologic diseases, infections, vascular diseases, musculoskeletal disorders and tumors, and it can also occur from unknown origins.

    To get even more specific, here is a list of some of the known causes of RSD. If you have RSD from something other than on this list, let me know and I will update it.

  5. How is RSD Diagnosed?

    There is not one single test that definitively says that a patient has RSD. Instead doctors rely upon an examination of the patient's history for recent or remote trauma, infection or disease, reports from the patient of symptoms, clinical observation of the patient, thermography, sweat tests, bone scans and diagnostic blocks.

    Symptoms: All RSD is accompanied by pain in the affected extremity. The pain may be spontaneous or evoked and is usually reported as diffuse burning. Pain may also be reported as aching or throbbing and may be intermittent or continuous, exacerbated by physical or emotional stress. Sensory changes are reported at some stage and include hyperesthesia and allodynia in the region of pain. Allodynia may occur to light touch, thermal stimulation (cold, warm), deep pressure or joint movement. Patient may also report that the extremity is warm and red or cold and blue/purple or mottled. Sweating may be reported as unchanged, increased or decreased. There may also be periods of apparently normal sympathetic function. Swelling may be reported at any stage of the condition, and this edema is typically peripheral and may be intermittent or permanent. This edema may be improved by elevation of the affected limb. Changes in nails, hair growth and skin texture may be reported. And motor dysfunction may include tremor, dystronia, and loss of strength and endurance of the affected muscle groups. Joint stiffness and swelling may be reported, particularly of the digits.

    Signs: Hyperalgesia may be evaluated by comparing sensory reports from nonpainful stimulation between the painful area and the symmetrical area on the opposite limb. Allodynia may be evaluated by applying nonnoxious stimulation to the affected limb and comparing it to a normal limb. This stimulation can include warm, cold, light pressure, deep pressure and joint movement. Skin color can be measured visually or through pulse oximetry. Sweat output can be estimated or quantitative measurements can be made through the quantitative sudomotor reflex test (see more on the QSART below in the section on lab tests). Edema can be determined through clinical impressions or more accurately through volume displacement measurement. Hair, skin and nails of the affected side should be compared with the unaffected side. Tremor, dystonia and changes in strength are measure clinically and objective measurements should be made for grip, apposition and opposition, pinch strength and weight bearing on lower extremity. There are no psychometric instruments that have been validated for RSD or CRPS and a psychiatrist or psychologist should use standard techniques for the initial assessment. The McGill Pain Questionnaire is often used for quantitative analysis. In all cases, clinical photography can be used to keep track of progress and make a record of skin discoloration, swelling, and hair and nail changes.

    Lab Tests:
    Thermography. Temperature of the affected limb should be measured with noncontact thermometry or thermography (usually with infrared thermometers or infrared film). Simultaneous measurements should be made on both limbs and several measurements should be taken over time since temperature fluctuates widely. A surface temperature difference of greater than or equal to 1°C must be recorded, either spontaneous or evoked.
    Three-phase bone scan. Technetium bone scanning is useful in diagnosing RSD because it shows an asymmetry of technetium uptake in the bones in the extremity involved with RSD. In the early stages this test may point to RSD on the wrong side. This test is considered nonspecific for RSD because other conditions, such as arthritis, gout, and infection can show the same results.
    QSART. Resting sweat output is determined by cholinergic sympathetic activity. The quantitative sudomotor axon reflex test, also known as the quantitative sweat response test (QSART), measures both resting sweat output and evoked sweat output. High sympathetic activity is indicated by a high resting sweat output and sympathetic overactivity is associated with an increased evoked sweat output. Increased sweating is common in RSD patients.
    Sympathetic Blockade. Sympathetic blockade is often used to diagnose sympathetically maintained pain. A positive response to an appropriately controlled sympathetic block is often believed to be an indicator of RSD. A successful block can only be assumed if signs of sympathetic activity in the affected area are absent. Skin temperature must be near core temperature and sweating must be absent.

  6. What are the symptoms?

    Not all people with RSD have all of these symptoms, and not all symptoms necessarily appear at the same time.

    Characterized by constant, spontaneous, severe burning pain, known as causalgia.

    Usually associated with

    RSD can also prolong the normal sympathetic response to an injury, such as stubbing a toe or getting a paper cut.

  7. What are the common treatments for RSD?

    This section is very much a work in progress.

    Methods for treating RSD vary widely and are the subject of much controversy and debate. Further, response to therapy is variable and few forms of treatment have been examined in properly managed clinical trials. The problem is further compounded by the fact that diagnosis criteria for RSD are not uniform.

    Treatments can be broken down by modalities, which include pharmacologic, nerve blocks, surgical or chemical sympathectomy, physical therapy and psychology.

    This list is by no means complete or comprehensive. It also lacks detail -- something we hope to remedy as soon as possible. This document is a work in progress, but it has always been our desire to make as much information available on this Web site as possible.

    1. Is there a cure?

      There is no one shot cure, though when caught in its early stages, RSD can often be completely reversed through sympathetic blocks, physical therapy, TENS and even medication. After RSD reaches more advanced stages, treatment is more difficult.

    2. What is the history of RSD?

      Despite it's relative anonymity, RSD has been around for a long time. In the 17th century, the famous surgeon Ambroise Paré wrote descriptions of burning pain following a peripheral nerve injury after King Charles IV, ill with smallpox, was subjected to bleeding (in vogue treatment of the day) induced by lancet wound to the arm. After this treatment, Charles suffered from persistent pain, muscle contracture, and inability to flex or extend his arm. The symptoms eventually disappeared. 1

      In 1864 S.W. Mitchell et. al. described severe burning pain in an extremity after nerve injuries in soldiers suffering from gunshot wounds in the Civil War. He eventually coined the term causalgia to describe this phenomenon.2

      References:
      1Raj, P.Prithvi, Pain Medicine: A Comprehensive Review. St. Louis: Mosby, 1996, p. 466.
      2Mitchell, SW, Morehouse, GR, and Keen, WW, Gunshot Wounds and Other Injuries of the Nerves. Philadelphia: KB Lippincott, 1864.

    3. What are sympathetic blocks?

    4. What is a TENS?

      Transcutaneous Electrical Nerve Stimulation.

      This is handled though a small battery operated device, about the size of a pager, that connects to the affected area via electrodes The TENS creates electrical pulses that are supposed to interrupt the pain generation and create serotonin and stimulate the release of endorphins. In some cases the use to the TENS alone is enough to arrest the RSD. In other patients the TENS is used in conjunction with blocks and physical therapy. There is some indication that the TENS will work even when sympathetic blocks are ineffective. We will soon have more information about TENS available on the RSDnet.org Web site.

    5. Where can I find a glossary explaining RSD terms?

      There a Glossary on the RSDnet server that contains most of the terms used when discussing RSD and its related symptoms, treatments, and causes.

    6. What is the Americans With Disabilities Act?

      The Americans with Disabilities Act was passed by Congress in 1990 and is now fully in effect. The idea behind this Act was to protect the rights of people with disabilities - both physical and mental - to work, travel, and so on. The ADA specifies that an employer must make reasonable accommodations for your disability. What reasonable means is rather subjective, unfortunately, and I've encountered instances where I would define reasonable one way, and they patently insisted on another. Generally reasonable accommodations include time to go to the doctor (including time for sympathetic blocks), special ergonomic chairs, desks, computer keyboards, perhaps even flexible hours. In any case, the ADA makes for good reading. RSDNet.org keeps several copies around in different formats - two different Web versions - a frames version if you are using Netscape 3.0 or Internet Explorer 3.01, a non-frames version and for people without good Web access, there is a text-only version on our ftp server.

    7. How does the ADA apply to someone with RSD?

      The ADA applies equally to anyone with a disability.

    8. Where can I get a copy of the ADA?

      RSDNet.org keeps several copies around in different formats - two different Web versions - a frames version if you are using Netscape 3.0 or Internet Explorer 3.01, a non-frames version and for people without good Web access, there is a text-only version on our ftp server.

    9. Research centers.

    10. Treatment centers.

    11. Is there an RSD mailing list on the Internet?

      The Reflex Sympathetic Dystrophy Network maintains a listserv for discussions of all things RSD. This is a very active mailing list. To subscribe, send an email message to listserv@listserv.rsdnet.org and as the text of the message write sub RSDNet-L your full name where you replace your full name with the name you want to use on the list. You can get more information about RSDNet-L on our Web site.

    12. Where can I find out more about RSD?

      The Reflex Sympathetic Dystrophy Network Web site is a good place to start. Here you will find documents on many aspects of RSD as well as references on where to find additional information. Abstracts of the current year's medical journal articles on RSD is available as well as a medical glossary.

      Unfortunately there are no books on RSD written for the patient. There, however, some excellent books and journal articles that have been written for the medical profession. While you will probably need a medical library to find these books and journals, they do contain information that is useful for patients who want to delve deeper in the details of this syndrome and its treatment. [We will soon have these books available in our new online bookstore, opening soon.]

      • Abram, S.E. and Boas, R.A., Sympathetic and visceral nerve blocks. In: J.L. Benumot (ed.), Procedures in Anesthesia and Intensive Care. Philadelphia: J.B. Lippincott, 1992, pp 787-806.
      • Abram, S.E. and Haddox, J.D., Chronic pain management. In: P.G. Barash, B.F. Cullen and R.K. Stoelting (eds.). Clinical Anesthesia, 2nd ed. Philadelphia: J.B. Lippincott, 1992, pp 1579-1607.
      • American Pain Society, Principles of Analgesic Use in the Treatment of Acute and Chronic Cancer Pain, 3rd. ed. Skokie, IL: American Pain Society, 1992.
      • Bonica, John J. (ed), The Management of Pain, 2nd. ed. Philadelphia: Lea & Febiger, 1990. [editor's note: this is one of the best general references on pain.]
      • Bonica, J.J. Causalgia and other reflex sympathetic dystrophies. Postgrad Med 53:143-148, 1973.
      • Blumberg, H. and Jänig, W. Clinical Manifestations of reflex sympathetic dystrophy and sympathetically maintained pain. In: P.D. Wall and R. Melzack (eds), Textbook of Pain, 3rd ed. Edinburgh, Churchill Livingstone, 1994, pp 685-698.
      • Cousins, M.J. and Bridenbaugh, P.O. (eds), Neural Blockade in Clinical Anesthesia and Pain Management, 2nd ed. Philadelphia: Lippincott, 1988.
      • Cousins, M.J. and Mather, L.E., Intrathecal and epidural administration of opioids. Anesthesiology, 61 (1984), 276.
      • Cousins, M.J. and Bromage, P.R., Epidural neural blockade. In: M.J. Cousins and P.O. Bridenbaugh (eds), Neural Blockade in Clinical Anesthesia and Pain Management, 2nd ed. Philadelphia: Lippincott, 1988.
      • Fields, Howard L., Core Curriculum For Professional Education in Pain. (A Report of the Task Force on Professional Education of the International Association for the Study of Pain.) Seattle: IASP Press, 1995.
      • Fields, Howard L. and Liebeskind, J.C. (eds.) Pharmacological Approaches to the Treatment of Chronic Pain: New Concepts and Critical Issues. Progress in Pain Research and Management, vol. 1. Seattle: IASP Press, 1994.
      • Gebhart, G.F., Hammond, D.L., and Jensen, T.S. (eds.), Proceedings of the 7th World Congress on Pain. Progress in Pain Research and Management, vol. 2. Seattle: IASP Press, 1994.
      • Hooshmand, Hooshang, Chronic Pain: Reflex Sympathetic Dystrophy Prevention and Management. Boca Raton: CRC Press, 1993. ISBN: 0-8493-8667-5
      • Jänig, Wilfrid and Stanton-Hicks, Michael (eds), Reflex Sympathetic Dystrophy: A Reappraisal (Progress in Pain Research and Management, vol. 6). Seattle: IASP, 1996. ISBN: 0-931092-13-2.
      • Jänig, Wilfrid and Schmidt, RF (eds), Pathophysiology and Mechanisms of Reflex Sympathetic Dystrophy, Weinheim: VCH, 1992.
      • Merskey, H. and Bogduk, N. (eds.), Classification of Chronic Pain: Descriptions of Chronic Pain Syndromes and Definitions of Pain Terms, 2nd ed. Seattle: IASP Press, 1994.
      • Mitchell, S.W., On the diseases of nerves resulting from injuries. In: A. Flint (ed.), Contributions Relating to the Causation and Prevention of Disease, and to Camp Disease. United States Sanitary Commission Memoirs. New York: The Commission, 1867.
      • Paré, A. Of the cure of wounds of the nervous parts. In: The Collected Words of Ambroise Paré. Pound Ridge: Milford House, Book 10: 400-402, 1634 (translated by T. Johnson.)
      • Portenoy, Russell K. and Kanner, Ronald M. (eds), Pain Management: Theory and Practice. Philadelphia: F.A. Davis, 1996. ISBN: 0-8036-0171-9
      • Payne, R. Neuropathic pain syndromes, with a special reference to causalgia and reflex sympathetic dystrophy. Clin. J. Pain, 2 (1986), pp 59-73.
      • Raj, P. Prithvi (ed.), Pain Medicine: A Comprehensive Review. St. Louis: Mosby, 1996.
      • Schwartzman, Robert J., Reflex Sympathetic Dystrophy. Current Opinion in Neurology and Neurosurgery, 1993, 6:531-536. ISSN:0951-7383; ISBN: 1-85922-008-8.
      • Schwartzman, Robert J., Reflex Sympathetic Dystrophy and Causalgia. Neurologic Clinics, 10:4 (Nov 1992), 953-973. ISSN:0733-8619.
      • Schwartzman, R.J. and McLellan, J. Reflex Sympathetic Dystrophy, a review. Arch. Neurol, 44 (1987), pp 555-561.
      • Stanton-Hicks, Michael (ed.), Sympathetic Pain. Boston: Kluwer Academic Publishers, 1989.
      • Tollison, C. David, Satterthwaite, John R., Tollison, Joseph W., Handbook of Pain Management, 2nd ed. Baltimore: Williams & Wilkins, 1989. ISBN: 0-683-08332-5.
      • Wall, P.D. and Melzack, R. (eds.), Textbook of Pain, 3rd ed.. Edinburgh, Churchill Livingstone, 1994. [editor's note: this is one of the best general references on pain.]
      • Warfield, Carol A. (ed.), Principles and Practice of Pain Management. New York: McGraw-Hill, 1993. ISBN: 0-07-068291-7.

    13. What is RSDnet.org?

      When I first was diagnosed with RSD in early 1991, there was very little information on this disorder to be found. I was lucky that my orthopedist had even heard of RSD and was able to send me to people who were able to get me started on treatment for the pain. Most medical professionals had not encountered even the name Reflex Sympathetic Dystrophy at that point. Finding information on the disorder for a non-medical person was difficult to impossible.

      This FAQ is intended to make that easier for anyone with RSD or who knows someone with RSD.

      This FAQ is not written by a doctor or medical professional. It is written by someone who has had RSD for five years and who has read extensively on the disorder. It is only intended as a source of preliminary information. At the end of this FAQ you will find a number of excellent resources on RSD written by medical professionals. Doctors specializing in pain management are also usually a very good source of information.

      This FAQ may be freely distributed as long as you do so in its original format, complete with this copyright information. This FAQ is © Copyright 1997 Karen Strauss.

      Direct all questions, comments and additions to this FAQ to Webster.

    This page was last updated on October 24, 1997.

    Please feel free to mail us any comments.