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personal stories and notes from our correspondents
Laura - Phoenix, Arizona
Yesterday I was diagnosed with RSD. I have it in both my feet, ankles, hands and wrists. Instead of trauma as the cause they believe that it was caused by Parvovirus B19 (commonly known as Fifth's disease). I came home and surfed the net to find out about the virus because I didn't understand how a human can get a dog virus (apparently it's the human form). Today I decided to check on RSD for fun mostly. After reading your article I was shocked. The doctor did not impress upon me the seriousness of the condition. She also said I would make a full recovery. When I asked how long it would take with physical therapy she did say months. I have been desperately ill and in hideous pain for five months. How much of that time is actually RSD I don't know and she can't tell.
Since the onset of my illness I have seen seven doctors and I spent a week in the hospital. One of the first four doctors I saw was a rheumatologist who poked me and stated with some authority that I had fibromyalgia and I would just have to deal with it. From what I've now learned, if I had accepted that diagnosis I could be permanently crippled.
Parvovirus B19 is normally a childhood and so mild that a child can get over it without anyone realising they had a virus at all. When adults get it, it often attacks the joints causing swelling, pain and stiffness. From what I understand, the attack on my joints, would be what triggered the RSD.
NB "Yesterday" refers
to early April 2001
Have any other readers experienced RSD/CRPS
in response to a viral infection? Let us know via FEEDBACK.
Carol - Wisconsin
In January 2001, I had a skiing accident that caused a colles fracture of the left wrist. I had never had a cast before and wondered aloud how such barbarous medical treatment as the painful cast could be silently tolerated by so many people. Why hadn't someone done something to find a gentler way of immobilising a limb? I asked the orthopaedic surgeon on each visit, "why aren't my nails growing?", "Why did you make an incision on the bottom of my wrist?" (surmising he must have cut it to be as "stinging" as it was). Eventually it was his nurse who mentioned Reflex Sympathetic Dystrophy, later corroborated by the neurosurgeon she put me in touch with. I am grateful to the orthopaedic surgeon for one thing: he did not send me off with addicting drugs. The neurosurgeon told me that by the time most people get to him they have seen five doctors and are addicted to painkillers.
Just like Derrick, I believe that early pain certainly beats long term disability if that can possibly be avoided. I was spending six hours a day doing hand, wrist, arm exercises. Both the orthopaedic surgeon and the neurosurgeon said, "Stop working so hard. Just use your hand naturally. If you do so much exercising, you'll be concentrating on the disease instead of living your life." They are missing some important facts: my hand isn't 'natural' yet (though it is better than it was!) and the pain of the exercises is under my control because I am imposing it. If I don't do the exercises, I have uncontrollable pain, which is much worse. Exercising makes the pain tolerable.
In addition to the hand/finger, wrist, arm exercises, I am doing Tai chi, stretching, weight lifting (modest) and aerobics. I'm also following what my body says I should be eating. I was happy to see it is along the lines that Dr. Hooshmand advocates on his website.
It's all producing results slowly - maddeningly slowly. I'm still worried about spread and final outcome. But it's okay. I'm managing and I'm seeing results.
UPDATE September 2001 - Carol is delighted to report that she is now "officially" in remission