I have CRPS 1, and experienced spread rather quickly after being diagnosed in June of 2008. Mine started in my rt shoulder after repeat shoulder surgeries for rotator cuff repair (50 weeks apart), and then moved quickly up to my cervical spine and occipital area. Within months my upper legs were painful to sit on and my feet hurt when I walked a lot. By the end of the first year I had been definitively diagnosed with spread to my right leg - it is larger than the left, has numerous knotted, painful varicose veins, is often discolored and just burns and throbs. Lidocaine infusions (I've had 7) calmed the pain down quite a bit for a while, until just recently. I have "cold" RSD - my extremities - hands and feet - are always freezing cold. Some people with RSD sweat a lot, I only did that for a month or two. I do get severe facial flushing sometimes.
My worst symptom is that I suffer from excrutiating headaches if I use my arms, especially the right one, for anything strenuous. So I tend not to use them. My right shoulder has become atrophied and is visibly smaller than the left, and my right arm is an inch and a half smaller around than the left.
Good luck to you. There are a lot of treatments, but no cure. The verry best thing you can do is to keep moving. use it or lose it. I know that when I am feeling lousy a brisk walk with my friends or my dog is usually the best medicine. Try to find a PT that has experience with RSD.
XOXOX Sandy
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Originally Posted by schappell
thank you the nice welcome. i am glad i have finally found a doctor that knows what he is doing. i have to wait another week to make an appoinment with the other two doctors i am going to see. i do have a question though, does anybody know what other things i will have to worry about since i already have degenerative disk disease in my lower back and some other problems. will this problem make the rsd worse. and is it normal to have pain spread to my other leg and hips within 4 months.
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