Hi all, I have been off line for a bit and just came back on and and heard some news, has anyone heard that there is a new name designation for CRPS? I heard this from a member of my site, has anyone here heard this information? I am looking for the source of it, Neuro Inflammation Disease or Neuro Inflammatory Disease... NID... or something to that effect...

Any info would be apreciated thanks.
hugs _ Sandra

They are looking to call it Neuro Inflammatory Disease. No wonder no one can keep up with it, this will be about the 5th or 6th name change.

Ada

I wonder why they keep changing the name of this disease/syndrome. It makes it more confusing for doctors, patients, and their families and caregivers. Personally, I prefer the name RSD, the first name I heard my syndrome was called. I continue using the name RSD because I am used to it. I noticed that a lot of medical professionals also continue using the name RSD.

I looked up Neuro Inflammatory Disease. Google suggested right away that I was searching for Neuroinflammatory as one word. It seems there are many diseases under this category - such as Parkinson's, MS, Alzehimer's. My search turned up a book on Amazon called "Migraine: A Neuroinflammatory Disease?"
Here is a link to where this term was mentioned back in 1997. "The Blood-Brain Barrier in Neuroinflammatory Diseases"
http://goo.gl/FhKiE

Perhaps when you saw it, they were saying RSD is a form of Neuroinflammatory Disease, not that they would replace the name RSD or CRPS with Neuroinflammatory Disease.

Although I use "RSD" - I don't like that it has the word sympathetic in it. Makes me wonder if when hearing that, people think we are folks who fake a disease to get sympathy. I had RSD before "CRPS" became popular - and it is hard for me to change. My doctors have all called it RSD - unless they made a written report or letter for me, and then they called it CRPS.

Hi, daililyfan:

Quote: "Although I use "RSD" - I don't like that it has the word sympathetic in it. Makes me wonder if when hearing that, people think we are folks who fake a disease to get sympathy. I had RSD before "CRPS" became popular - and it is hard for me to change. My doctors have all called it RSD - unless they made a written report or letter for me, and then they called it CRPS."

What I like best in the term RSD (Reflex Sympathetic Dystrophy) is when it is called RSDS (Reflex Sympathetic Dystrophy Syndrome). The two problems I have with the term CRPS (Chronic Regional Pain Syndrome) are:
1) I keep being confused between CRPS Type 1 and CRPS Type 2. I can only hope it is not my memory problems causing this confusion.
2) I have the feeling that with the trem CRPS, the emphasis is placed on the pain. You will see why later. Even if we, as RSD or CRPS patients, know chronic pain is our main RSD or CRPS symptom, I would prefer a term that also includes other important symptoms. I am saying this because, with the term CRPS, a lot of medical professionals place emphasis on the pain. I have heard remarks like: "It is just pain. It is not a big deal. It is not like you have cancer..." Grrr... I hate hearing this, especially from medical professionals, who are supposed to know what CRPS is.

To say the truth, my favorite term is neither RSD nor CRPS, but a term used a lot in France, and maybe in other European countries. I do not know if this term is used in the U.S. It is algoneurodystrophy, shortened as AND (A stands for algo, N stands for neuro, and D stands for dystrophy. I think that each individual has its favorite term, depending on his/her feelings and experiences with them.

Because they still don't know how it is caused to the extent of keeping a name. SO, as they "learn" more they decide to "refine" the name

The only name I knew of before hand was RSD to CRPS. I had no idea it changed so many times XD

I mostly refer to it as RSDS in writing, but I usually just say "Reflex Sympathetic Dystrophy" to medical professionals, because most don't know what RSDS is, or even worse, they pretend to know but haven't a clue and end up hurting you by handling you improperly.

I read it was first called "causalgia" when first presented during the Civil War. Not sure what after that until I was diagnosed in 1992 with RSD (Reflex Sympathetic Dystrophy), now CRPS (Complex Regional Pain Syndrome). My doctors (and I) mostly refer to it as RSD. But most paperwork has RSD/CRPS on it.

I wish they would stop changing the name of it, or just decide on one and stay with it. So many healthcare professionals do not know anything about it, and with another name change it just confuses them even more!

I have CRPS...what?? you know RSD...oh ok! That is how most conversations go with a new dr.

EXACTLY. Or even worse, you say, RSD... what? You know, Reflex Sympathetic Dystrophy... ah, okay!

(And I won't even mention that blank look.)