Story Board (personal RSD stories) No.39

Peggy - Oroville, California

I have been an RSD patient since I was 18, I am currently 36. I contacted this disease from an ankle injury my last year of high school. Back then (1982) everyone thought I was crazy and I sometimes thought I was also. It was very hard trying to understand what was happening to me. I had years of physical therapy and doctors with no relief. I had learned to live with this monster for years and knew my limitations. Then in 1999 I picked a piece of paper up at work and my back went out for the third time in a few months. Finally in July 1999 I was taken off work because things had gotten so bad. I was sent to numerous doctors and the only answer I got was that they thought I had a herniated disk. I was then sent to a spine specialist who guaranteed me a 75% success rate if I had surgery. I informed him about my RSD past because I did not know a lot about it but thought it might cause problems, but I was told not to worry because no harm would come of it. After I finally had surgery in 2000 I came round from the anaesthetic and immediately knew that something was wrong. My upper thigh was numb and the smallest touch hurt it badly. They told me this was normal and relief may take a few weeks, but not only did my leg get worse but my back wasn't any better either.

Now in 2001 I have RSD in my right ankle (original site) plus my left leg and hip and my back is worse then it was before I had the surgery, I thought my life had changed before that operation but it does not compare to the change it has taken on now. I am no longer able to work I am receiving Workers Comp and have had to retire from my job. I do not want to sound like a pity person because I am not. I am grateful for my family whose love has helped me a lot and I thank God everyday that no one else in my family has this horrible disease. It breaks my heart to see how many other people are suffering. I did not have a computer when I first had RSD, so was not able to research the condition.

A specialist at a pain clinic told me that people with RSD should not have surgery because the risk is high that the symptoms will travel. I just hope by sending this someone else will get lots of opinions before undergoing surgery.

Thanks for the warning, Peggy, and we all hope your condition improves.

Philip Machin - UK

Hi my name is Philip Machin. I'm disabled from RSD in my left leg and I have now been like this for 4 years. They say they cant do any thing for me, though I've had cortisone and nerve block injections and loads off pain killers, anti-inflammatory tablets and antidepressants. I've spent a lot of time in hospitals and now I am taking morphine but still not getting anywhere with the pain, which is constant day and night. It is a nightmare and I don't know how much more pain I can take. I also use a TENS machine a heat blanket and ice packs, and I bath in E45 oil and put E45 cream on when I can because I can hardly touch it. For the last 6 months I've been suffering pins and needles and numbness on the side of my face and I get a lot of pain in my eye left eye and have nose bleeds as well. I cant go on like this. Can anybody help me please? I cant put my foot to the floor, I've got trouble in the bottom of back and my leg is getting worse and worse; I've got bad circulation and blisters and the skin on my leg peels off. Also, my nails don't grow and I've got osteoporosis.
Philip's problems read like a casebook of RSD symptoms, though some of these problems relate to lack of use of the affected part, rather than the RSD itself (Osteoporosis, for instance, because an unused limb will eventually lose bone density). However much it hurts, it is necessary to maintain some level of exercise to prevent worse damage. Pain is usually unavoidable with RSD, but that doesn't mean we have to lose mobility altogether. Derrick - RSD Alert Editor.

www.rsdalert.co.uk