I just don't understand why RSD is considered a RARE Mysterious disease. I live on Long Island NY and personally know 4 RSDers within 2 miles of my house. I have heard and read that about 1/2-1 million people have RSD. I just also heard that only about 30,000 people in the US have Huntingtons Chorea which is much more well known. Why isn't the word getting out there. There is a big fund raiser in Central Park (Manhatten) and there were only about 125 people there supporting RSD last year.

Any thoughts- this is driving me nuts!

i have to say i was a registered nurse for years before the rsd curse hit me and i had never heard of rsd. i never once heard a patient give it in a history that we would do on every admission. so, it is not well known at all. i know of no one in my area who has it. and that is what most people with rsd say. they thought they were the only ones .... joan

Hi Deb,

I have been totally frustrated at times over or exact words. I have alot of thoughts on this personally. But it is just my opinion, and I do not feel comfortable posting what I think. I've often wonder why the name was changed from RSD to CRPS as well. Hugs, Roz

Hi Deb, Like Joan I was an RN as well and had never heard of this condition prior to getting it myself. I know that many rsd sites mention there are many of us with this problem but I only know of 1 other in my area that has it. Most doctors I went to hadn't heard of it either. Could it be that only a minority of us don't get better? I would imagine that the ones that do recover simply go on with their life and don't mention it. That might explain why we don't hear of it so often. Just a thought. Like you it does tend to get on my nerves. I'm always having to explain to people what it is because none of them have heard of it either. Hope you are having an OK day..Jeannie

Yes, an sometimes i don't even know how to explain it!! a nerve disorder? a pain disorder?? how does one make it short and sweet and yet try to get the intensity of it across???? beats me. joan

It's the worse having to explain it to doctors! I have had them stare at me like I made it up, or heard it on a fictional program on the Sci-Fi channel

There have been some that, I swear, leave the exam room and go to their office to look it up. Sigh!

Mike