Have any of you who have permanent disabilities due to RSD/CRPS had problems with disability check-ups and with doctors who aren't knowledgeable about the condition?

In my country it's like a lottery. It depends on which doctor you end up with at those check-ups, and it doesn't seem at all fair that they can present you with a doctor who isn't knowledgeable about RSD/CRPS.

I am from Europe, have RSD/CRPS since September 21, 1995 due to a car accident (almost 14 years) and I am disabled because of late diagnosis (almost 3 years into the RSD) and late stage RSD in both legs. I also have chondromalacia patellae due to the accident (both knees). Since 2008 arms/hands have started giving me problems as well. So I have this in 4 limbs now.

I was granted disability for 8 years (knowledgeable doctor), and then saw a few doctors at those check-ups who didn't know RSD/CRPS at all, consequently my disability payments were abruptly taken away from me last year. I have had to go on wellfare because of it.

Professionally, I am a multilingual secretary and haven't been able to work since 1997. Back then I wasn't on disability yet, but on a different system for about three years that occupies itself with temporary disabilty (depended on the doctor there as well). I wasn't diagnosed until 1998.

Anyone recognize this? Is my country the only one with this problem?

I know someone who has 1 RSD affected hand and was granted permanent (for the rest of her life) disability payments by the same government that suspended my disability payments (and I have 4 affected limbs). It all depends on which doctor you end up with and I'm not the only one with that problem. It isn't fair, is it?

CRPSbe, Is there no way to hire a lawyer in your country & fight for your permanent disablity? Because it seems completly unfair. Here in the US we can hire companies or attorneys to help us fight for either private or Social Security disabilty. Your situation just seems so wrong. I hope you find a way to get what is rightfully yours.
Hugs, Denny

What they usually do here is to go over peoples records every so often and make a decision on wheather they can stay on disability.

For a few years I had to fill out forms telling what I was diagnosed with and send them in. They finally sent me a letter that they wouldn't bother me anymore.

What I have found here with SS is that a person needs to go to the Dr. often and keep records. They want to know that you aren't well enough that you can quit going to Drs.

I agree with Denny, if you can hire a lawyer that would be helpful.

I do know to that the SS Drs here aren't any help at getting SS for people most of the time. They are hired by the SS so they aren't going to go against them very often.

I saw 3 SS Drs. and the 4th one sent in info saying she felt I was diabled and they lost her paperwork. Anything to keep from paying people.

It's important to keep up on what is going on with your case if you can because my lawyer was a joke. SS lost my papers, they sent them to the wrong state, I went through a lot of crap with them.

I don't know how Europe is though but I am sorry for what you are going through and I do hope you can get the disablity back. It's very hard to work with RSD.

Feel better soon.
Ada

We did hire a lawyer, because what they did was outrageous.

I have permanent stage 3 RSD, it's not ever getting better or going away. So yes, it is hard. The same year they canceled my disability payments was the year I started having problems with my arms/hands also, so it was in fact getting worse.

The first doctor immediately asked (I wasn't even wheeled in fully), "What psychologist are you seeing?" So she didn't know about RSD at all.

The second one was an orthopedist who immediately wanted to examine my legs. How? By putting hard pressure on both upper legs. Hadn't he read the reports from my doctors that I had RSD? Why do they do that? It's worse than torture! No, he didn't know how to handle an RSD patient at all, and things like that shouldn't even be allowed to happen!

I have a thick file over there, filled with doctor's reports that express the finality of the condition. It doesn't seem to be enough.

I agree, the doctor's visits are in function of SS, not in your best interest (as it should be). You need a lawyer.

I still think they need a common denominator for RSD, they shouldn't leave it to the individual competency of each and every doctor that works for social security. It's what makes it a lottery! They need to find knowledgeable doctors, or doctors who at least know what RSD is!