Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 07-13-2008, 04:36 PM #21
sherimac sherimac is offline
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Join Date: Jul 2008
Location: Orlando, FL
Posts: 17
15 yr Member
sherimac sherimac is offline
Junior Member
 
Join Date: Jul 2008
Location: Orlando, FL
Posts: 17
15 yr Member
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I am new here, but wanted to respond to this. I was diagnosed w/ rsd approximately 17 years ago. I was one of the lucky ones and it went into remission fro about 8 years, that is until last summer, when it came roaring back. The rsd is in my right leg, since returning it has spread to my hip and is starting in my spine. When I was first dx I couldn't find a neurologist to even see me, whent hey found out the dx they didn't want to touch me. The Pain Clinic I went to was behavior based and wanted to desensitize the rsd areas, personally I found this barbaric, almost as bad as being told by numerous doctors it was all in my head and referring me to pschiatrists, because I was imagining all of this. Well fast forward things have changed, but I still haven't found a Neurologist to see me. The Pain doc I went to put me throug an EMG, which we know usually doesn't show anything, then wanted me to take Lyrica. I tried Neurontin years ago, had a very bad reaction to it and didn't want to try Lyrica, not to mention the weight gain from it. His response to me was well call when you decide you want to take this. I haven't called him again. The bottom line I have researched and I know a lot about this, I've been dealing with it for years. The sad thing is we know more about this disease then most doctors. We shouldn't have to educate them ut sometimes we do. I have found most ER doctors don't know much about rsd and act llike it is all in our heads. Don't let them get to you, find a doctor you trust and good luck.
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