Changing the name again
 

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.

Name change
 

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 ?

Block and acupuncture points in ears
 

Find out who the best RSD versed anesthologist is around you.
Ask him/her to teach you to do a Sphenoid sinus block with 4% liquid lidocaine, and a long 1sided cutip.
You go down the sinus cavity and the cutip rests on the Vegas nerve. You let it rest there for about 10 minutes. It interrupts the sympathetic firing.

So if you get a bad blood draw or whatever, you can start treating it immediately morning and evening.

The acupuncture study was is Europe. However the Acupuncturist College in Gainsville Florida knows about this. I have been unable to find any written information about it. Maybe someone has good research capabilities.

My doc said the regional means that it doesn't stay in one nerve region. Mine started with a tarsal tunnel problem, but the pain etc is not limited to the area that the tarsal nerve injury would normally hurt. And they took sympathetic out of the name because the role of the sympathetic system versus brain etc is uncertain.

Yeah, it seems like both names have problems, doesn't it?!

I'm ticked off, and anxious! I've had this bad fellow for almost 30 years. Now, My neuro has retired, and I'm out here with my finger well, you know where. So I gotta find a new doc, in a couple weeks, the PM docs here in Philly, seem to want to shoot ya up. I was comfy, with my methadone, cymbalta, diazepam, and some other things. NOW WHAT? I'm so nerved out! And afraid! I was comfy! sort of. well, turn a new page....
So, here I go.

Anyone else here go to an anesthesiologist? I've had nerve blocks under Dr Schwartxman before, but, all they did was make me numb, didn't do anything for the pain! And, he agreed! He just touched me and I jumped! So, what do I expect now? Are these people gonna give me my methadone? (Wonderful medication, no Buzz), and, I'm diabetic now! My family doc, ( a board certified internist, is absolutely AFRAID of me!) yea! So, if any of you have any advice, or clues, let me know? I'd preciate it! Thanks!

Pete
ASB

To whom do we send our concerns about this? I have no clue. This is for the U.S. I really have no clue for the U.K. or Canada.
A government agency, the A.M.A., The surgeon general?
We all need help here! This Name-code thing affects so many aspects of our lives, work, future medical care, social security, awareness by family & friends etc.
I even have a ribbon on my car from RSDHope.org that says "CRPS/RSD help put out the flame". If I wasn't aware I would probably think it just looks to complicated to be memorable.

Ugh !

It's been 9 years for me, and I'm still waiting for that sympathy to come (from anyone but fellow forum members) !

:grouphug:

I'm with KathyUK on this one, when I saw the thread title, I thought the poster was saying the name was being changed from CRPS to something new. The change was made a fair few years ago, but I completely understand that if you've been living with this thing for 10 or 15 years under one name, it must be frustrating to have had it changed.

Personally CRPS makes a lot more sense to me as a name for this than RSD.
.....

CHRONIC
Crumbs yes it is. Chronic means constant or long-term.

REGIONAL
The point here is that it starts in one area. If it spreads, it moves to another area. It doesn't start in your whole body (as far as we know), although some poor folk end up with it everywhere. For most of us, it will be in one or more areas of our body, not all over.

PAIN
Yes. A lot. The most pain possible on the McGill pain scale. Nuff said.

SYNDROME
Wikipedia says: "...a syndrome is the association of several clinically recognizable features, signs (observed by someone other than the patient), symptoms (reported by the patient), phenomena or characteristics that often occur together..." That seems a pretty fair assessment of CRPS - it can vary a lot from person to person.

Ok. Now for the old name. And I'm honestly NOT trying to be flippant with any of this.

REFLEX
Well that's weird - I thought reflexes were what you had tested by a doc tapping below your knee, elbow, ankle etc. What's that got to do with it?

SYMPATHETIC
Well very few doctors or nurses are sympathetic, even IF they understand what this thing is. Society as a whole knows nothing of it, so they definitely aren't. Family and friends struggle with this one as well.
Medically, it is now recognised that although the sympathetic nerves are involved, they are not responsible for the condition - there's a lot involved, the brain, CNS, sympathetic nerves, genetics even. Concentrating on the sympathetic bit is misleading.

DYSTROPHY
I had to look this one up. Wikipedia says dystrophy is the degeneration of tissue. Which is one possible part of the condition, but there's a lot more involved - the pain being the main thing, along with many other symptoms. Some people have the pain and weakness with very little obvious tissue damage, so highlighting it in the name again gives a bias to visual diagnosis, which is massively unhelpful as the picture is much more complicated.
........

I've only had this for 2 years (only :rolleyes:) but although I understand people not liking the name change, I don't think it's helpful NOT to accept and embrace the new one. In my experience the name RSD now seems to be mostly used now by the community who have suffered for years with not just the condition, but the ignorance of the medical and general population. They've bravely fought to try and raise awareness, and of course resented the name change.

But personally I don't think it's helpful to criticise the name of CRPS. We would all agree that the PAIN is the worst and main thing. Everything else that comes with it is inconvenient and distressing, but the pain is what cripples, depresses and immobilises us.

Just my point of view on this. Hope I haven't offended anyone - I respect every single person fighting this thing, whether it's been for five minutes or five decades...

Bram :grouphug: