Reflex Sympathetic Dystrophy Syndrome (RSD) – also known as Complex Regional Pain Syndrome (CRPS) – is a chronic neurological syndrome that may be characterized by:
severe burning pain
pathological changes in bone and skin
excessive sweating
tissue swelling
extreme sensitivity to touch
These symptoms usually starts after an injury or surgery, even fairly minor injuries to a limb. Over time the pain and syndrome can involve the whole limb. Some are unfortunate to have their pain spread to other limbs either through injury or no injury.
However not all of these symptoms are present at any one time and some patients may not have all those symptoms listed. This is why CRPS is classified as a Syndrome and not a disease. Disease’s have exact symptoms, whereas syndromes can vary in symptoms.
There are a lot of GPs that have either not heard of CRPS, or don’t believe it exists or know of CRPS but have poor knowledge of the condition. That is not the doctors fault, some who are new to this condition make the best doctors as they are learning with you. But this may also mean it takes a long time to get diagnosed and receive treatment. The sad thing is timely treatment is crucial to stop the nerve pathways that are over firing, before it becomes entrenched in the brains memory and also becomes more persistent. Treatment in the first 3 months preferably is critical to a higher chance of full remission. However some have had success in the first 6 months and a small percentage after 6 months. It is common to have a patient who doesn’t get diagnosed for 5 to 10 years and then go into remission with treatment, however due to the length of time the nerve pathways have been altered and these people can relapse with a very minor injury or have a full blown relapse up to a few years later.
It is important also to attend a clinic that recognises CRPS/RSD as high priority. They must know your diagnosis or potential diagnosis at the time of booking, usually mentioned in the faxed referral letter. This is important because all clinics have waiting lists and it can take months to get in with other conditions.
Hope this helps with some understanding.
Melanie,
Read about your blog on the Coffeehouse list… I need to get back there and post, but it seems I joined, got behind and then got discouraged… But I will go in today and let everyone know what I’ve been up to.
I think your blog looks great. I wish I had time for blogging. I did start one, but haven’t kept it up. It is hard to do that, as well as keep up with my forum and deal with the consuming pain of RSD.
I commend you for blogging about RSD. The more we all do towards getting the word out there, the more information there is for those who suffer, their physicians, families, etc. Also, the more it is out there, the more hope we have of keeping it in the news, which may in turn lead to a cure!
Keep up the good work, Mel!
Marie (aka MemeMarie)
http://www.rsdsupport.com
Hi Marie,
I am proud to do this and take part in helping others with my condition. i think we suffer enough without having to put with non believers or ignorant people.
Time to educate and create an understanding.
Melanie