CRPS / RSD Sites

Sunset treeResearch on CRPS / RSD is limited and gravely in need of new blood and perspectives. Sites dedicated to education and public awareness are a work-in-progress; many are starving for funds. Astonishingly, even Neurological Health Charities Canada has yet to list a CRPS / RSD site on its web site. We have a long way to go.

I try to list here some of the more reputable organizations I have found but readers should use discretion and exercise careful thought when considering what they find here; a listing does not necessarily imply endorsement. Opinions on RSD / CRPS vary widely and often conflict, as do the approaches for treating it. That said, many of the practitioners I spoke to all agreed on one thing: that the people most likely to recover or reverse this condition are those who are proactive, willing to persist for as long as they have to in order to discover the course best suited to their needs, because CRPS affects everyone a little bit differently.

For this reason I hope anyone suffering from RSD / CRPS will take the time to explore other resources offered here on Pain Maps, as many of them are being applied for this condition. (I recommend the pages on Neuroplasticity and Graded Motor Imagery, both under Brain Rehab; BodyMind under Perspectives on Pain, and Alternative Treatments under the Link tab to start).

 

 

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
International nonprofit organization in Connecticut formed in 1984 with a mission to support and education those with CRPS / RSD
Conducting conferences, promoting research, offering hope
http://rsds.org/

RSD Canada
A mission to support, educate and inform pain sufferers, the community and medical professionals treating RSD
http://www.rsdcanada.org/parc/english/parc/aboutus.html

International Research Foundation for RSD / CRPS
Not-for-profit organization dedicated to education & research.
Establishing an international research network
http://www.rsdfoundation.org/

The Burning Truth About Complex Regional Pain Syndrome
Wendy Weckstein – great resource, articles by informed & critical thinker
http://www.wendyweckstein.com/

International Pain Foundation (iPain)
iPain offers community-based support services for chronic pain patients with neuropathy conditions including RSD/CRPS, Diabetic Neuropathy, Lupus, Multiple Sclerosis & more
Education, awareness & access to care – fabulous group of people
http://www.internationalpain.org

RSD Awareness
Spreading the word through books, fundraisers, blogs, support groups & more
http://www.rsdawareness.com/

Complex Regional Syndrome Fact Sheet
National Institute of Neurological Disorders and Stroke
Informative overview for those who don’t know what it is, but important to supplement research from other sources
http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

Complex Regional Pain Syndrome (CRPS)
Also known as Reflex Sympathetic Dystrophy (RSD)
An overview by Dr. David Lincoln Nelson (Surgeon)
http://www.davidlnelson.md/articles/RSD.htm

CRPS/UK Living With Pain
Information, events, resources & more
https://crps-uk.org/

Burning Nights CRPS
UK Charity dedicated to support & raising awareness of this life changing condition amongst public & healthcare professionals
http://www.burningnightscrps.org/