Reflex Sympathetic Dystrophy or RSD has been the name of this disease since 1985. Prior to that it was Sydudack Dystrophy.
Now CRPS ? Really ?

The name change excuse is supposedly because people do not have dystrophy.
Well, I don't know anyone with long time RSD that doesn't have the dystrophy part...

So the only "progress" is to change the name again, so now we have to say we have RSD/CRPS.

RSD has the name recognition. Doctors have heard of RSD even if they are not sure what it really is. Changing the name again is a huge step backwards.

Once it spreads down your spinal column it is no longer regional. So complex yes, but regional no. A pain syndrome, but a neurological one, so not just a pain syndrome. So CRPS does not cut it. RSD does.

It's like MS getting changed now to MSDA (mylian sheath disappearing act)

I have voiced my opinion to the so called association. The association was started by parents of 2children that had RSD. They did more for us then this group of people. Now that it is a bigger group with a board, it is not much help at all...

Did you know there was a successful study done in Europe for people under 10 years. 3needle points in the ears, everyday for 3 years. Most were cured of their RSD symptoms. I have not been able to find the study, but know of a person being treated from this study.

Did you know an anesthologist can teach you to do your own nerve block using a liquid lidocaine solution. No needle involved.

Anyway, my 2cents for 28 years of RSD

Wow, you're right! I never thought about it that way.
I've only had it for 6 months but yes, I had the dystrophy part almost right away. It should more accurately go by RSD.

It took less than 6 months for my foot to dystrophy. 25 years later, my entire left side has dystrophy.

kathie

In 2010 the definition of what is neurological pain was changed and RSD/CRPS is outside that definition and no longer regarded as neurologicla. You are wrong 95% of the medical profession have never heard of RSD/CRPS in fact a much better name for it was coined in the UK
FIIKS F'ed if I know syndrome

Okay. I want to know more about the anesthologist who can teach us to do our own liquid lidocain nerve block. I also want to know more about the 3 needle points in the ears.

I am game! If I can do either of these procedures myself and improve the symptoms from CRPS, I'm there! I'll do it. I don't have a whole lot to lose and I do have a lot to gain.

When my daughter was diagnosed, the doctor said CRPS was the newest name, and pronounced it "crips", but said either name was OK. We went with the newest name for 8 months, then my sister said she hated the sound of CRPS, because it sounds like "crypts", and she used RSD. This is completely unscientific and probably kinda silly, but we've switched back to saying RSD now because it doesn't sound as awful, and the disease is so awful that anything we can do to make it even a teensy bit better, we do.

When I was still able to work, and my employer wanted to know "what is wrong with you" and I told him Reflex Sympathethic Dystrophy -- he said "so, it's some sort of mental issue where you want sympathy?"

I still say RSD because I had it before they thought up CRPS.

And, I truly believe I have this crud in my spine - it's been bright red along my spine for more than 3 years and no one can figure out why... and has the same burning, pain etc. as my foot and arms do.

Not so "regional"

My family doc actually said to me - how can it spread to your spine? the name even says "regional" because it stays in one limb.

It's all so confusing. For us and the doctors.

I still refer to it as RSD since that is what I was diagnosed with 22 years ago. Regional?? Definitely not when I have it in all four extremities, trunk, face and head...and internally. Some drs have heard of RSD and some CRPS. I call it CRPS when they look at me crazy when I say RSD...which happens a lot

CRPS isn't that new - when I clicked on this thread I thought we were getting a new name for this lol! Over here CRPS is more widely accepted I think. I prefer the term CRPS as it describes the condition clearer to me personally and so I identify with it better. The "regional" part is a good descriptor as for most it starts that way and spreads that way. When I've used the term Reflex Sympathetic Dystrophy, people have needed more of an explanation and wanted to know what's wrong with my reflexes and why I want sympathy for it (har dee har har). I read however that some docs call it "craps" and that bothers me, crap as this disease is lol! I don't like the term RSD, I think it's vague and I don't identify with it. It also bothers me that most printoff info is American and therefore often labelled RSD and I have to then explain that it's the old name for CRPS.

Changing the name over and over, and calling it progress - there is just something wrong with the whole thing to me.
I got the RSD in 1985. At that time there was Syduack's Dystrophy and Causalgia. Then there was RSd and Causalgia. Then RSD.
Now CRPS.

Other serious diseases don't change their name and call it progress...
We need 1 name for this for name recognition, and stick with it.

The etiology is unknown, like MS our mylian sheath that covers our nerves goes away. But MS is understood by most even if they aren't sure what it is.
So this is my gripe and concern. I used to wear a Medic Alert bracelet, but having to put RSD/CRPS was crazy. I used to spell out RSD.

I just would like actual progress to be made and to leave the name alone.
They have been able to give rats/mice RSD for about 20 years now.
So they never have been able to figure out why they can give it to mice ?
Then they can't figure out how to reverse it ?