Sunday, March 16, 2014

RSD or CRPS? I still want to call it Reflex Sympathetic Dystrophy!

I want to continue calling our disease RSD or Reflex Sympathetic Dystrophy, not CRPS or Complex Regional Pain Syndrome. Do I have to make the change????

I thought I would post this short answer here because we are still getting this question here at American RSDHope and not only from patients but also from family members, some medical professionals, and even from some patients who run support groups.

Some people are still clinging to the old designation "RSD" with the last few ounces of strength in their body and refuse to make the change. Well, guess what? You just don't have a choice.

But I don't wannu

It's kind of like when you work with children in the school system and it is time to read. They will invariably tell you, "But I don't want to read."

"Well guess what? You don't have a choice here. kiddo ;-)"

Actually we try to explain to them how important it is to read, how much it will help them in 2nd., 3rd. and 4th. grade, etc. but you get the idea. We try very hard to never say what your parents did growing up, you all know what I am referring to.

But just because you don't want to do something, doesn't mean that is the way it's going to be.

Unfortunately we can't throw the "Because I said so!" at everyone in the CRPS Community who asks "WHY do I have to call it CRPS?". It just won't work.

The same holds true for deciding what to call our disease.

But It’s what I am used to and I prefer that name to CRPS! 

I can understand wanting to stick to the old name. We all got used to saying “RSD”, we started to get some traction with the public with that name, it also sounded a lot better than CRPS sounds. That sounds like, “Hey I have craps!”  Who wants to say they have craps? Yuck! 

But because any of us, you, me, anyone who deals with CRPS patients, must help them, we must use the correct and current terminology. 

The current and correct terminology says the name of the disease is COMPLEX REGIONAL PAIN SYNDROME, TYPES I AND II, so that is what we must call it. Period. End of story. We don’t get to pick and choose which parts of this disease we want to follow and which we want to ignore. If that were the case I don't think there would be ANY patients who would check off the box "most severe form of chronic pain know to man".

Two Distinct Types 

In fact though it is two very distinct types, Types I and II. CRPS Type I, formerly RSDS, and Type II, formerly Causalgia. They have very different and distinct etiologies, are diagnosed differently, and need to be treated very differently and obviously have very different outcomes. There are some methods of treatment that will never work on Type II for instance that will many times work for Type I , because of the severe nerve damage that Type II involves. 

For more information on the difference between the two types of CRPS please visit our website by clicking on American RSDHope or visit our main page HERE , click on the link above.

For these, and other reasons, the name change was made back in 1985. It did take longer for some parts of the medical community to make the switch, especially the Physical Therapy community, but the switch was vital in order to better diagnose, treat, and care for CRPS patients. So while it may seem like the same old illness the name change was necessary and the distinction was much needed, and not only has the medical community made the change but so has SSD, WC, and all of the coding. 

There are still some out there in the medical community who have not made the change and it is one way to determine who is current in their medical reading, research, and treatment and thinking of our disease. Help us help them get current. Refer them to American RSDHope's website or the RSDSA's website so they can learn what you now know.

New Medication Coming specifically for CRPS Type I soon!

Now we even have a brand new medication coming out that has been developed for CRPS,  neridronate, that has a 100% success rate of placing CRPS Type I patients into remission. It does not work on Type II patients. If you research “new RSD medication” you may not find it but it will pop up in many different locations with a search of “new CRPS medication".  Imagine missing this news because you stuck to your guns and only dealt with this disease on an RSD basis? Or if you wanted to make sure you got the latest news on your disease but only searched for "RSD Information" instead of "CRPS information"?

We all fought it in the beginning. We ALL did, myself included. But that battle ended many years ago and we lost. The name change was a done deal, we need to move on. 

Please understand it isn’t simply me being obstinate or ornery. It is a necessary thing we must deal with every day and anyone who deals with, instruct, assists patients must make the switch in their heads for the reasons stated above. 

Only a few weeks ago Jim Broatch (of the RSDSA) and I had this very discussion with some of the leaders of other medical organizations from around the country at a meeting that our two organizations co-hosted in Philadelphia, so you aren’t alone if you still want to hold on to the old “RSD” designation, but you need to jump on the CRPS train quickly. It has left the station and will soon be rounding the bend and out of sight! 

I hope that clears things up?


American RSDHope

Nat'l CRPS Awareness

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