I am almost three years into this disease, without seeing any change for the better. The doctors say they have never seen such skin tightening, but I am lucky to not have had any organ involvement yet.
The pain in my arms is so bad that I have to take large doses of pain killers, and this barely helps. I do not know how much tighter my skin can get. It is crushing the blood vessels and my arms and hands are just about frozen. I am still able to write and use the computer, but I am slowly losing that ability.
I have tried chemo, cytoxan, and cellcept. Nothing has helped. I have been to pain clinics and therapy, but nothing has worked. I have a lot of bowel trouble (bleeding, nausea, vomiting, stomach pain and diarrhea). I also have trouble with swallowing and have lost a total of seventy pounds in two years. I am all bent over at the waist and have to use a walker or a wheelchair to get around. All the bones in my face are very painful to the touch, and my mouth is very sensitive to spicy or carbonated beverages.
To say I live in misery is putting it mildly. If the weather is lousy, it is a good bet that I will have to stay in bed for the day. I would love to hear from someone that is as sick as I am. Just to know that I am not alone would help. This disease has many faces, so I hope to hear from others who are going through the same thing.
New email address needed 08-06-09 SLE
Old Email Prefix: mak3812
Story edited 12-09-05 JTD
Story posted 01-10-06 SLE
Email address added 01-26-06 SLE
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Dysphagia (Difficulty Swallowing)
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