NeuroTalk Support Groups

I wanted to introduce myself. I am new here but not to the pain of RSD. I was originally diagnosed with rsd in the earlt 1990's. It all started with a WC injury, and a horrible nightmare that followed. I originally hurt my knww crawling around on the floor filing at work. I was sent to a WalkIn clinic, who put me in an immobilizer and referred me to an orthopaedic. I saw one, who said I don't know what is wrong, go to PT it will settle down. I said no, called WC and asked for a 2nd opinion to find out what was wrong, well they took their time making an appointment and before I was able to keep the appointment they made I had DVT and the valves were destoryed in the lower part of leg. I ended up in the hospital for 15 days! All due to the wrong type of immobilizer. The pain started after this, all the muscles atrophied in my leg, I had foot drop, I had to learn how to walk all over again, and I had the WC nightmare to deal with that a lot of us know of not authorizing, cutting off checks, etc. What a nightmare. I took me 3 years to get SSDI. After several years I was one of the lucky ones.....the rsd went into remission for about 8 years, that is until last summer when it came roaring back, it has now spread into my hip and spine. I went back to work 8 years ago when it went into remission and now I am stuck working, whether I really an or not. Thank God for my primary care doctor, otherwise, I don't know what I would do. I now work for SSA in a sedentary job, so the chances of getting SSDI again are nil. I struggle everyday to stand, walk and sit, I come home every night and go to bed. The quality of my life has declined drastically, I used to enjoy shopping, antiquing and shooting weddings. Now it's all I can do to make it through the grocery store.

I have tried just about every medication over the years and had 4 years of PT and aqua therapy, tried acupuncture, TENS unit set me off, it was horrible, blocks. I'm not sure what I am going to do this time, the past year has been awful. I did see a Pain doc, he didn't want to listen to me when I told him I didn't want to try Lyrica because I had had a bad reaction to Neurontin, his respoonse was to call me when I decided I wanted to try it. Well I haven't called. One doctor I saw told me to do whatever it was last time that put it into remission, well if i knew what that was do you honestly think I would been there to see him. I wouldv'e been telling everyone how to get it into remission! It's bad when we know more than the doctors, which is what I am finding now. Thank God my primary isn't afraid to prescribe pain meds and knows enough to understand the difference between addiction and dependence!

I am looking forward to meeting more peopke with rsd and I am wondering if anyone else has experienced rsd going into remission then coming back worse than before?