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 01-30-2012, 06:10 PM #25
msjanice12 msjanice12 is offline
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Join Date: Jan 2012
Location: Pittsburgh PA
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10 yr Member
msjanice12 msjanice12 is offline
Junior Member
 
Join Date: Jan 2012
Location: Pittsburgh PA
Posts: 18
10 yr Member
Smile Daniella, wait until you hear this ....

I am actually going to the neurologists and pain management doctors in Pittsburgh PA at the University of Pittsburgh Medical Center and these doctors are also on the faculty in the neurology department at the University. But these aren't the doctors who mistreated me ... the first neurologist I went to was independent and wasn't in the UPMC system. The only problem I've had with the neurosurgeon, neurologist and two pain management doctors at UPMC is that I mentioned RSD and they gave me no response when I mentioned it. So my plan is to keep my 6 month appointments with the neurologist I am now seeing and as time goes on ... and I get stabilized on my meds ... if there is such a thing ... I may mention it to him again later on ... I think you have to build up a relationship with the doctors first? Actually, I discussed this with my general practitioner (been going to her for 15 years) and she at least listened to me ... I'm sure, as all of these results come back to the new neurologist, he may be more receptive to me ... since he is now ruling out everything else with all of these tests. Gee, I hope I don't gain weight with the neurontin. I've seen many people mention on the internet that that was a big side effect of neurontin but the listed side effects says that it is only 2% ... so hopefully I'll by pass that side effect. I raised my dosage last night again and so far just feel a little off balance but that happens with each increase for a few days ... my fear is that in years to come I could have a flare up of the RSD in another part of my body and again no one would believe me. I noticed that only people who have had RSD understand how debilitating the pain can be. I am usually very stoic but when I had it in my elbow and I couldn't stand to have anyone touch it and after I had my teeth pulled and the pain was so bad for about a week ... rhose were the two times in my life when I thought ... wow, I am REALLY in trouble here ... but then the pain subsides and the health care professionals are sort of like ... see it wasn't that bad ... but we know that it WAS that bad. But life's good ... and will be better if the pain lessens some more .... looking forward to a day when I can eat something and enjoy it without pain! (What did they finally do to help the pain in your eyes?) Actually, for now I am thinking like you ... I'm not going to worry so much about what my condition is called as I am going to do what I can to get some of this pain relieved.
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