Wednesday, September 10, 2008
CRPS, RSDS, WHICH IS IT?
so, as another day passes.
What do I feel?
It's always something.
Apparently I pulled a muscle in my left side a couple of weeks ago. For any of you guys who played football it feels like I was on the bottom of a pile and I got sucker-punched in the kidneys a few times after the whistle was blown.
It only hurts when I move.
Other than that, It isn't a problem.
When you have CRPS, every little injury, every little pain, gets exaggerated. Because of your everyday pain, the "normal" pain of your CRPS that you deal with 24/7, when you get an additional source of pain, however small, it gets exaggerated tenfold.
Ok. I have a question for all you patients out there with CRPS/RSDS. Now, if you have kept up with the medical information in the last few years know that the definitions in our community have changed. (see CRPS or RSDS, WHICH IS IT? )
What used to be called Reflex Sympathetic Dystrophy Syndrome, RSDS, is now known as Complex Regional Pain Syndrome, CRPS, Type I.
What used to be known as Causalgia is now known as CRPS Type II.
So slowly over the last decade the medical community has truly made a concerted effort to make that changeover on medical charts and forms to the CRPS terminology and away from the RSD term. It is a slow process to be sure and the medical professionals who see the disease less often are more likely to use the old "RSD" rather than "CRPS". Understandable.
The problem though is that patients, especially the newer ones, are getting extremely confused. Quite a few are getting multiple diagnoses; one with RSD and another with CRPS. They then write to us at American RSDHope (and probably the folks at the RSDSA) and ask us which is they have? Or they write to us and say, "No, I don't have RSD, I have CRPS", or vice versa.
Now of course it is possible to have CRPS and not have RSD. Those people are the ones who have CRPS Type II.
But nearly every time people are told this it is because they have gotten conflicting opinions on the name but in the end, the same diagnosis. It leads to a lot of confusion for the patient.
So here is my question for all of you.
How many of you has this happened to? How many of you were unaware of the name change, here many years later? Any medical professionals out there unaware of it? (anonymity promised, I just am curious)
So if you would like to send in your comments here that is fine or email them to firstname.lastname@example.org
thanks, I appreciate it.
I hope you have a great night,