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Complex Regional Pain Syndrome (CRPS) Also known as: Reflex Sympathetic Dystrophy Syndrome (RSDS) or Causalgia

Complex regional pain syndrome (CRPS) is an uncommon nerve disorder. It causes intense pain, usually in the arms, hands, legs or feet. It happens after an injury, either to a nerve or to tissue in the affected area. Rest and time may only make it worse. Doctors are not sure what causes it.
Symptoms in the affected area are
• Dramatic changes in temperature and color

• Intense burning pain

• Extreme skin sensitivity

The cause of CRPS is unknown, and there is no cure. It can get worse over time, and may spread to other parts of the body. Occasionally it goes away, either temporarily or for good.

Treatment focuses on relieving the pain, and can include medicines, physical therapy and nerve blocks.

Source: NIH: National Institute of Neurological Disorders and Stroke http://www.nlm.nih.gov/medlineplus/complexregionalpainsyndrome.html

Websites

http://www.aapainmanage.org American Academy of Pain Management 13947 Mono Way #A Sonora, CA 95370 Phone: (209) 533-9744 The Academy is a nonprofit professional organization serving clinicians, representing a broad number of disciplines, who treat people with pain. The Patients tab includes a pain management specialist locator and links to other resources.

http://www.rsdhope.org/
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American RSDHope E-mail: rsdhope@roadrunner.com American RSDHope is a national non-profit organization dedicated to increasing awareness of Complex Regional Pain Syndrome, or CRPS, formerly known as Reflex Sympathetic Dystrophy Syndrome, RSDS. The site includes information on CRPS stages and symptoms, treatments, physical therapy, research, and support groups.

http://www.arthritis.org/disease-center.php?disease_id=36 Arthritis Foundation: Reflex Sympathetic Dystrophy Syndrome Phone: 800-283-7800 (Toll-free)

http://www.familyvillage.wisc.edu/lib_rsds.htm Family Village: Reflex Sympathetic Dystrophy Syndrome This page provides links to resources for learning more about RSDS, including discussion groups.

http://www.forgrace.org/ For Grace PO Box 1724 Studio City, CA 91614 E-mail: wipaware@forgrace.org For Grace works with media, healthcare professionals and policy makers to ensure ethical and equal treatment of all women in pain and to increase awareness of gender disparities in pain assessment and treatment. The organization dedicated its first five years to raising awareness about Complex Regional Pain Syndrome.

http://www.inthefaceofpain.com/content/uploads/2011/09/factsheet_RSDS.pdf In the Face of Pain: Reflex Sympathetic Dystrophy Syndrome (RSDS)/Complex Regional Pain Syndrome (CRPS) Pain Fact sheet produced by Purdue Pharma

http://www.rsdfoundation.org International Research Foundation for RSD/CRPS c/o Mary Davis, Executive Director 1910 East Busch Boulevard Tampa, FL 33612 Phone: 813-907-2312 E-mail: info@rsdfoundation.org The International Research Foundation for RSD/CRPS is a not-for-profit organization dedicated to education and research. The website provides clinical practice guidelines, study reports, and educational videos and DVDs. Information is available in the following languages: English, Spanish, French, German, Italian, Japanese and Chinese.
http://www.medfriendly.com/causalgia.php5 MedFriendly: Causalgia

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http://www.merckmanuals.com/professional/neurologic_disorders/pain/neuropathic_pain. html#v1033831 Merck Manual for Health Care Professionals: Neuropathic Pain This overview of neuropathic pain includes a section on Complex Regional Pain Syndrome, including discussion of symptoms, diagnosis and treatment.

http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympath etic_dystrophy.htm National Institute of Neurological Disorders and Stroke (NINDS): Complex Regional Pain Syndrome Fact Sheet NINDS provides information about CRPS: symptoms, causes, diagnoses, prognosis, treatments, links to studies, and research literature.

http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/reflex_sympathetic_d ystrophy.htm National Institute of Neurological Disorders and Stroke (NINDS): Complex Regional Pain Syndrome Information Page Condensed version of the fact sheet

http://www.ninds.nih.gov/news_and_events/proceedings/reflex_sympathetic_dystrophy_ 2001.htm National Institute of Neurological Disorders and Stroke (NINDS): Reflex Sympathetic Dystrophy/ Complex Regional Pain Syndromes (CRPS) – State-of-theScience Summary of meeting held December 15, 2001.

http://www.rarediseases.org National Organization for Rare Disorders (NORD) 55 Kenosia Avenue PO Box 1968 Danbury, CT 06813-1968 Phone: 203-744-0100, 800-999-6673 (Toll-free) NORD offers patients information through a Patient Information Center which people can call for information. Questions can also be submitted online through Ask the Nurse and Ask the Genetic Counselor. The Patient Networking Program links members to other patients and families dealing with the same disease.

NORDS’s Rare Disease Database allows access to topics covered in the database and some associated abstracts. Full reports are available to database subscribers. Some public libraries, hospitals, and universities subscribe to NORD’s Rare Disease Database for patients and families.

http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Reflex%20Sy mpathetic%20Dystrophy%20Syndrome NORD: Reflex Sympathetic Dystrophy Syndrome abstract

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http://www.rsds.org/ Reflexive Sympathetic Dystrophy Syndrome Association (RSDSA) P.O. Box 502 Milford, CT 06460 Phone: 203-877-3790, 877-662-7737 (Toll-free) Email: info@rsds.org RSDSA promotes awareness and education about CRPS to patients, their families and friends, and insurance and healthcare providers. The organization also raises money for research. The website has information for patients and medical providers and includes patient stories, newsletters, and a youth section.

http://neurosurgery.ucla.edu/body.cfm?id=122 UCLA Neurosurgery: Causalgia

http://www.webmd.com/hw/brain_nervous_system/nord184.asp WebMD: Reflex Sympathetic Dystrophy Syndrome This site provides general information on RSDS as well as a list of resources.

Discussion Forums

http://neurotalk.psychcentral.com/forum21.html NeuroTalk Communities—Reflex Sympathetic Dystrophy (RSD and CRPS)

The following books are available for free loan from the PRC library. For more information, please see http://www.paralysis.org and click Borrow from Our Lending Library under PRC Quick Links.

Books

• CRPS: Current Diagnosis and Therapy. Progress in Pain Research and Management. Volume 32. Peter R. Wilson, Michael Stanton-Hicks, R. Norman Harden, editors. Seattle: IASP Press, 2005. For clinicians.

• Elster, Elizabeth. Power Through Pain: Living with Reflex Neurovascular Dystrophy. New York: iUniverse, 2007.

• Frame, Kathy. Reflex Sympathetic Dystrophy. Bloomington, IN: Xlibris, 2008.

• Hemmenway, Nicole. No, It Is Not in My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon. Garden City, NY: Morgan James Publishing, 2010.

• Hooshmand, Hooshang. Chronic Pain: Reflex Sympathetic Dystrophy
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• Prevention and Management. New York: CRC Press, 1993.

• Ingle, Barby. RSD in Me! A Patient and Caregiver Guide to Reflex Sympathetic Dystrophy and Other Chronic Pain Conditions. c2006, 2009.

• Juris, Elena. Positive Options for Reflex Sympathetic Dystrophy: Self-Help and Treatment. Alameda, CA: Hunter House Inc., Publishers, 2005.

• Lang, Linda and Peter Moskovitz. Living with RSDS. Oakland, CA: New Harbinger Publications, 2003.

• Miller, Ruth L. S. Lessons From the Washing Machine: Living with Reflex Sympathetic Dystrophy (RSD) – Chronic Pain. Enumclaw, WA: Pleasant Word, 2004.

• The Official Patient’s Sourcebook on: Reflex Sympathetic Dystrophy Syndrome. Parker, James. N. and Philip M. Parker, editors. San Diego, CA: ICON Health Publications, 2002.

• Reflex Sympathetic Dystrophy: A 3-in-1 Medical Reference. Parker, James. N. and Philip M. Parker, Editors. San Diego, CA: ICON Group International, Inc., 2004.

The information contained in this message is presented for the purpose of educating and informing you about paralysis and its effects. Nothing contained in this message should be construed nor is intended to be used for medical diagnosis or treatment. It should not be used in place of the advice of your physician or other qualified health care provider. Should you have any health care related questions, please call or see your physician or other qualified health care provider promptly. Always consult with your physician or other qualified health care provider before embarking on a new treatment, diet or fitness program. You should never disregard medical advice or delay in seeking it because of something you have read in this message.

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