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Story Board
personal stories and notes from our correspondents |
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Kathy - North Carolina, USA I love the info you have in your site. I too have RSD/CRPS and have had it for 10 years now. I have a long story of doctors that gave me the run around till it was too late. It took seven years for me to find a doctor that would treat me and tell me what I had. Mine is in my left side and is now moving to my right. It started in my left hip then moved down my leg to my foot. Now it's up my whole left side. I have a new problem that has come up recently - shaking all over inside. It's like being on a vibrating bed. My doctor said it is a hyperactive nervous system due to the RSD/CRPS. It happens some times with RSD, but most of the time it is MS patients who get this problem. The doctor told me to get the word out that the treatment for this is TOPAMAX, but it takes awhile to get working. Believe me it works so please let the folks know about this. Another correspondent writes - Hello! I have had RSD/CRPS whatever they deem to call it for the past two years. I bent down in work to reach something from under a worktop and heard an almighty crack in my knee. It turned out to be a badly torn cartilage. I suffered a lot of pain but thought that once I had an Arthroscopy everything would be fine. How wrong I was! I couldn't understand why I was still in so much pain, neither could my Consultant at that time. After another MRI scan I was told that I would have to have another Arthroscopy as some irregularities had shown up. It was only after this second op that the words RSD were mentioned as I was still having excruciating pain. I receive treatment from the pain clinic which has had varying results, at the moment I take Gabapentin 300mg Amitryptiline 20mg and I apply Lignocaine 5% patches on my knee overnight which numbs the area so at least I get some sleep. During the daytime I also use a TENS machine. The most difficult thing to accept is the loss of my mobility. I do exercises every day to strengthen my leg muscles. I'm supposed to learn to pace myself which is extremely hard as I've always been an active person. My life has totally changed. I've had to retire from my job which I loved and I now rely on my wonderful husband to take me out as I can no longer drive. However, I am determined to be in control of this condition and not the other way round. You could say it's my BURNING ambition! |
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