Story Board (personal RSD stories) No.18

Deborah - Jacksonville, Florida

I suffered frostbite to my left hand on a business trip in Detroit, Michigan. I went to my GP who sent me to an Orthopedic doctor who diagnosed Carpal Tunnel Syndrome and made me wear a hand brace for 9 days. I told both these doctors that I suspected frostbite but they wouldn't listen. When the hand got worse through wearing the CTS brace I went back to my GP and made him phone a Rheumatologist, who diagnosed Raynaud's Phenonmenon over the phone. I then went to a Neurologist who diagnosed Carpal Tunnel Syndrome again. Yet again I went back to my GP who had me have several tests and again I was diagnosed with Raynaud's Phenonmenon. Next, a vascular surgeon gave the same diagnosis and told me to take Tylenol and come back in 2 months. Two months later I found a vascular surgeon who recognised the seriousness of my condition. He sent me to a pain institute for stellate ganglion blocks where the Anesthesiologist finally diagnosed me with RSD (three months after the problem began). In all I saw 5 doctors, who all refused to listen to what I had to say. It was my research on the internet that finally got the ball moving. Reading Pam Lockwood's story is like living my life all over again.

Anonymous correspondent

I was hit in the right elbow with a falling 5 pound motor at work 2½ years ago. I didn't receive the proper medical treatment because my supervisor said I was "just old". I am now 44 years old and have been out of work for almost 2 years. When I finally did get treatment it was a joke and I carried on working. At night I would come home crying with the pain. Finally an orthopaedic doctor took me completely off work for at least 6 weeks back in June 1999. Physical therapy only made the pain worse. Another doctor did a nerve conduction test and told me the pain was all in my mind and I was exaggerating it. I was sent to a Neurologist, who in turn put me on neurotonin, somas and a lot of other things, but none of them helped. The only result was that I gained 40 pounds weight. My Neurologist started talking about RSD and I was sent to a pain management Doctor who confirmed the diagnosis. I started taking Oxicontin, which didn't do anything for my pain, Viox and Celebrex only caused me more problems.

Due to all the different medications I was given I started having stomach bleeding. I have an attorney helping me fight Workers Compensation. I send him everything I can find to help my case. He knew of RSD but not how debilitating it really is. I was an independent, always-on-the-go person. My husband and other family are really helpful but I was used to doing things on my own and found it hard to let anyone help me. I can't write anymore, I can't do repetitive work, most days I can't even stand unsupported. My case is coming up for settlement and I want to find a case similar to mine to show to my lawyer so he can see how RSD changes your life and identify the possible costs for medical treatment. I am now receiving Social Security, but that isn't a lot, and I do not receive the medical coverage for 2 years. I now belong to a RSD Support Group who help me. Joining this group showed my husband and I how debilitating this condition can be. Actually, it scared us to death.

It's up to us to inform our Doctors, lawyers and anyone about RSD.

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