Hi there,
My name is Jean, I live in Australia, and I have had rsd for 22 years.
It started in the right arm and hand, travelled to the left arm, down both sides of torso and up into my neck, left ear and left side of the face. I have also developed fibromyalgia in the rest of my body. Great. This has ruined my life and dreams also. I have trouble typing as well, my arms feel heavy and like they are not mine. I get burning in the backs of my hands and pins and needles as well. I am on a few meds which have helped but of course all this has caused nerve damage (not the meds). I have a lot of pain in my legs and hips ((fibro).
I am on Lexapro and Lyrica. They have helped me a lot and I have no side effects, the pain I still have I can cope with. The pain in my face and ear have disappeared, and so my legs. My rheumatologist is great.
I put up with the pain without meds for years, trying all sorts of things. Back in the 80's I feel I was a guinea pig. Back then too it was called RSI. Going to physios who stretched my neck, manipulated my shoulder blades which spasmed violently, put me on light duties...hah...repititive duties which only made it worse. I don't think they knew what to do with me. I went to a chiropractor but to no avail. Had acupuncture which helped the headaches. I finally joined a support group cried for 2 hours because I finally found other people who were going through the same thing. The topic of the day was "My frightened arms". That really scared me, because I couldn't do anything with my arms. Workcover sent me to there doctors who said it was in my head, or because I got divorced...after a while you begin to believe them. Went to a pain specialist who used to hynotise me...which worked to a certain degree...but most times she hynotised herself.
I left work in 1996 after fighting for a payout which I finally got on Jan 3 1996. I was immediately marched out of the office, not being allowed to speak to anyone and it was all very humiliating.
I didn't go to another rheumatologist until 2003 because I found it so tiresome of trying to justify my pain. How surprised I was when he was very sympathetic and very helpful and understanding. It wasn't a workcover doctor. He changed all my meds and changed my life. I was seeing light at the end of the tunnel.
I will have to stop now...I'm seizing up....
It's great to be here and I look forward to getting to know you all.
Jean.
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