Keith McCarthy - Essex

My name is Keith and I am 24 years of age. One day in November 2000 I woke up with extreme pain in both my shins. Initially I thought the problem might be shin splints and would quickly die down, but four days later I had had enough and took myself along to the local hospital. That's is when my horror story started.

A doctor examined me and sent me for an x-ray. When the results came back she told me I had fluid on my knee needed it extracted. That all sounded routine and I agreed to the treatment, so she injected me with local anaesthetic and tried several times to extract the fluid from my knee. It was a very, very painful procedure and no wonder... The diagnosis was wrong and there was no fluid to extract!

Next, they suggested I might have a blood clot in my leg, so they put me on a heparin drip to thin the blood then came back a couple of hours later to tell me I must stay in for tests. At about midnight I was taken up to a ward, feeling terrible pain. Then, lying in bed, I suddenly felt my leg deflate like a punctured balloon. I was worried but I didn't make a fuss because I thought the problem might have been the anaesthetic wearing off but, since that night, my leg has never woken up again. They kept me in hospital for two weeks and, by the time I left they diagnosed RSD (or CRPS) in my right leg. Additionally, I had to take warfarin because of the blood clot.

I have had barely any support with the RSD. My consultant sent me for intensive physiotherapy and I pushed for hydrotherapy as well - though neither treatment has yet produced an improvement. During this time I became quite depressed, having lost mobility and fitness in the prime of my life. I used to do a lot of cycling, swimming and running but now I am in a wheelchair and can't stand unaided for more than two minutes. Typically of RSD, my pain is endless and burning.

Before the 2001 RSDS conference at Eastbourne I couldn't see an end to my problem but now I am seeing the other side of the tunnel. Although there is no complete cure I was encourage to see your case and meet other people who are managing to pull themselves through. It has given me even more determination than ever before. I am due to have a lumbar sympathetic block soon and hope that will help with the pain. But, whatever happens, there is one statement I heard at the conference and will keep reminding myself about… "Don't let the pain control your life, you need to control the pain".

Brave words, Keith. When it gets tough, remember lots of people are standing with you.