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

i would bet that there are some who go look it up! probably more than we realize.
sometimes i think the rsd is something from the sci fi channel! i wish i could turn it off!

I went to my Dr. who gives me my xanax and EffexorXR and when he asked me today how I was, I said I was diagnoised in April with RSD. he said; "what is that"?? when I told him, he said, I never heard of that and to get a second opioion! LOL I then TRIED to tell him what it was, and he just said, "oh" and shrugged his shoulders! Made me feel like an alian from outterspace. LOL Love, Desi

Strange, Debbie, that you have so many people around you with RSD! I had never heard of it, neither did any of my family, neighbors, church family, friends... and some of my drs./ physical therapists didn't know what it was either! Oh, one exception- a friend had it, but he has been in remission for 12 years, after battling it for 13 months!

I had the opposite question: how do so many Americans have RSD, and so many people that I know have no clue about it, and they've never heard of anyone with it?!

Hi!

No, I'd never heard of it either and don't know anyone who has, or who has it. Medics here, though, have certainly encountered it; I'm told the incidence in SE Asia is fairly high.

Deb, get your water tested! ( only kidding..) Ada said she has a couple of neighbours with it too.

But the problem lies as much in the names themselves. Someone here (sorry, can't remember who off the top of my head) has a sig that goes something like "the more names they give to a disease, the less they know about it" - and, as Plato said, "They certainly give very strange names to diseases".

Try these on for size:
"'Stocking and Glove' Syndrome, Reflex Sympathetic Dystrophy Syndrome;, Shoulder-hand Syndrome, Steinbrocker Syndrome, Sudeck's Atrophy, causalgia, Sudeck's osteodystrophy, posttraumatic osteoporosis, algodystrophy, peripheral trophoneurosis, algoneurodystrophy, reflex sympathetic dystrophy, RSD, causalgia, Sudeck's, Sudeck-Leriche syndrome, minor traumatic dystrophy, major traumatic dystrophy, Reflex Neurovascular Dystrophy, neurovascular dystrophy, reflex neurovascular dystrophy, post-traumatic vasomotor disorder, sympathetic neurovascular dystrophy, post-traumatic vasospasm, complex regional pain syndrome, CRPS.

And I don't think that's a complete list.

Both RSD and CRPS are completely forgettable acronyms. RSD is marginally easier than CRPS, which is ridiculously hard to remember, and as for both Reflex Sympathetic Dystrophy and Complex Regional Pain Syndrome...... need I say more??!

We remember medical diseases with only 2 words in the title much more easily, and specially if there's someone's name in it, or it's elegantly foreign. We just need a Dr. Huntington, Parkinson, or Addison to come up with a breakthrough, oh yes! Or possibly a Dr. Epstein-Barr or Alzheimer. Of course, I jest, we'd also need a couple of celebrities to develop it too, and go public with it.

BTW, I usually don't bother with the name, if I say it people (including friends) instantly lose interest - I am *so* familiar with that glazed look in the listener's eyes - I just say "it's a nerve disorder that fires pain signals 24/7" and leave it at that. Then they glaze over and lose interest anyway .

all the best!

PS -Just wanted to add, the way it is now, you could find a whole street, one person has RSD, nextdoor neighbour has Sudecks', person opposite has CRPS, across from him is the guy with causalgia, just down the road is the lady with algodystrophy, her neighbour's daughter has RND - and none of them realize it's all the same condition, because their doc has called it one thing only and hey, why ever should you be looking for even a second name??