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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Welcome to the board Tigerlily 11,
I just passed my 1 year of having RSD. I was up to 3600 of neurontin a day but now I'm on Lyrica and Cymbalta instead. Yes, you will probably gain weight, but it helps lessen the RSD pain so give it a try. My Lyrica plays with my head and makes me forgetful. Like other people here say, there's all kinds of stuff to try. I believe the most important thing to have is a good doctor who really knows about RSD. I'm amazed at what I read here on the boards sometimes about the docs not diagnosing and not even being knowledgeable about RSD. When I first got diagnosed, I was truly scared to death but with time, my fear lessened. I've not had any blocks (the thought scares me, plus I wonder about the block possibly making the RSD worse because of the procedure iItself) I've only had meds and I'm working 3 hours each day. I've been doing this job for 9 years and I'm very hopeful to be able to continue to work. Mine is in my feet and ankles after a foot surgery with bad outcome. I don't see a PM doctor either. I see a RSD specialist (he's also a rheumatologist) every 6 weeks now. When I was first diagnosed, it was every 2 weeks or more often if I was hurting. I also take an occasional Vicodin. I do alot of walking (I'm at Middle school) so I can get re-assigned to another job with less walking if necessary.
I'm sorry to hear you have RSD but there's some really great people here and we are here to help you through the good days and the bad days.
Take good care, Deb
Hello newly diagnosed,
Please give it a try. Like others have said, we're all very different with how we react to 1 med or another so what works for one, might not work for the other. I was diagnosed in Sep of 07 and began with steroids in very high doses, then neurontin. It increased up to 3600 mg daily at which point I had to change meds because it no longer helped me with my burning feet. I had surgery on my left foot (my plantar plate was ruptured and needed repair) but it had a bad outcome. I wasn't able to do medical malpractice. I'm now on Cymbalta 120 mg daily, and Lyrica 650 mg daily. If I have to walk alot, I can hurt pretty badly so I take an occasional Vicodin. I'm able to continue my job of working 3 hours a day, but holy cow -- Sometimes it's very very hard and sometimes I just want to go onto SSD but I'm really afraid of being denied because many RSD'rs get denied. So, I'm working as long as I can because my husband and I have 2 daughters and we need the $$$$$. We live in Southern California and it's pretty expensive. I'm hopeful that my pain level never worsens. I'm fortunate because I have an RSD doctor who is a rheumatologist but did RSD research for many many years so he's familiar with it. My foot surgery was in late July, then I went up to UCLA in August, and had a few tests, continued having bad pain, then UCLA ordered the 3 phase bone scan and then came the bummer news. It was on a Friday afternoon and they called at 3:30 to tell me I had RSD. Lately, I have really been peeved with my foot surgeon because it's my opinion (and some of my docs opinions) that I wouldn't have RSD if he would have done it properly. I would do anything to get rid of this crappy stuff but it's my reality now. I haven't had good days for the past few, so I guess I'm on the pity pot. Please forgive, but I know someone out there will understand because everyone seems very understanding and stuff --
Gotta run, it's late. I'm hopeful you're able to make a decision about your medication and treatment. We're all here to help you and to listen to you, whatever the issue.
Deb





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