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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hello all,

I was finally diagnosed with RSD about 4 years ago. From reading some of the postings here I know that it was "normal" that I was misdiagnosed for several years before that.

After an injury and treatment, a specialist told me what I had was RSD and gave me a little information about it. The primary doctor I had at that time agreed, even though he had never brought up RSD before. Beforehand he had told me my pain was all in my head, since MRI tests, X-Rays, blood tests and everything else he could think of came back negative for a definite cause.

I applied for disability with Social Security and received my benefits. Now they have sent me an update form. It looks standard but what has me concerned is that I have a different primary doctor now and on the form Social Security wants to list whether or not I have discussed going back to work with my doctor (I have not), and any most recent treatments or hospitalizations.

My current doctor is one of those that doesn't believe in prescribing narcotic painkillers unless you have just been run over by a car and have broken bones protruding. So I treat my pain with ice and heat. It doesn't help much, but in my area the pickings are slim for doctors (I'm in a small town and can't drive far), and most seem to share this attitude of not prescribing narcotics for RSD pain. I don't ask for narcotics because I figure that will label me as a drug seeker. So I am not sure what my doctor will tell the SSA.

As for the hospitalization description Social Security wants, that was not related to my RSD, and I am afraid they will look at that and think I am "cured" or relapsed, if that even happens.

What I want to know is what to expect. Is this SSA update just routine, or should I expect them to look at me as a case they can just dispose of, since many people think RSD is not even a real syndrome or debilitating?

If I could work, I would. It would be welcome instead of the pain and irritation and constant soreness of RSD.

Does anyone have experience dealing with Social Security disability updates? I know some people have had to get a lawyer just to get their benefits. Do I need to get a lawyer for this update?

Thanks in advance for any help.

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