Sherry
I have RSD as well. I have had it for 3 and a half years now. It started in my right lower calf and is now in my foot, thigh, and for the past six months - in my right forearm. Along with the RSD, when the pain is at it's worst or I'm under a lot of stress, I get a large, ulcerative blister that is very painful and leaves a terrible scar. It is usually on my right hip or right back. Now that the RSD is in my arm, I just had a blister appear on the knuckle of my right index finger. The worst blisters are even paiful in that area after the skin has healed. I would like to know if anyone else has experienced this. Also, I've been turned down twice by SSI and I have a patient advocate rep that is going to represent me in the hearing that is coming up soon. I also will have a "review" done on me by my disability carrier in six months and that worries me. I have 9 well known doctors that have declared me "disabled" but still I worry that they will take the benefits from me and I will have no income. It is so hard to make people understand the devastation that chronic pain causes in ones life. That is why I would appreciate any hints you may be able to give me for the hearing with SSI and disability. I do not sleep now, I cannot sit, walk, lie down or stand for more than a few minutes at a time. I'm constantly in motion trying to take my mind off of the pain. I feel as if thousands of ants are stinging me at once. My leg swells so much that the bone aches. My ankle and foot "fall inward" when I walk. I feel like I am walking on the bones of the foot rather than the sole of my foot. I've tried arch supports, I've tried doctor after doctor and no one seems to want to see a RSD patient much less attempt to treat you. The major sensory nerve in my leg was cut during a surgery and I have had a nerve graft to try to repair this nerve. But, I am told even if the graft "takes" it may be years before I have any relief from this pain and I know it is spreading, because as I said, it is now in my arm and hand. I've lost my job, my lifestyle and along with all of this I've lost me. I see a wonderful chronic pain psychiatrist and I would not be here today were it not for him. I would recommend all RSD patients have this type specialist to help them cope. And, I would recommend that RSD patients beware of pain clinics that give you very little or no relief and yet want to do block after block needlessly. It was a very expensive lesson for me. I was on a merry -go- round of needles and medication all to no avail. And, the doctor was charging $1100.00 per week! I too have had the tens machine and it did nothing. I write now in hope that someone might have some hints for me with the legal, personal, and medical problems that arise secondary to this disabiling disorder. (other than nerve blocks!)I would also like to know if anyone has had success with a spinal cord stimulator and if so - where their body was affected by the RSD. Thank you.