Donna,

My onset was traumatic, but from a vaccine reaction, so different in most ways than yours as my immune system actually attacked my nerves as well as the "foreign" toxin. However, I have learned a bit from the numerous Drs I've seen, maybe it will be of help to you as well.

The vaccine reaction caused a brachial neuritis, a severe inflammation of the brachial plexus. Because the pain was very high and constant for 3 weeks or so, (it didn't respond to any meds), the spinal cord changed, became sensitized. As a result, I have RSD, but it has slowly become body-wide, because the entire central nervous system is affected. The RSD began and is still worst in the original injured arm with TOS, but burning feet and pain to deep touch all over were also early signs. If all the nerve damage and nerve compression were magically fixed tomorrow I would still experience pain because the brain would still be receiving pain messages from the CNS.

That is I think why it is important not to ignore the pain and keep pushing, because you can overload the "pain gates", like the vaccine response did in my case. And undoing that is almost impossible, unless you're extremely lucky. I've tried everything there is, short of a coma treatment or thalidomide, both of which scare the pants off me. I had a spinal cord stimulator implanted 6 weeks ago and am the most comfortable I have been since Feb 2003, except for a few weeks after my rib resection when it seemed like the RSD had gone into remission.

Dr Togut talks about getting your disease to plateau - he's mostly talking about TOS, but RSD will do so as well. If you learn to accept what your capabilities are, for now, and not push back, things can quiet down, and you may find yourself in a much better position in a year or two, able to do more than you'd thought. But if you keep pushing you will keep things active and inflamed and never allow things to quiet down, to heal as much as possible, and rest what isn't. Then I think you do run a risk of nerve damage, especially if there is a scalene that rubs or scissors a nerve or nerve bundle each time you move your arm a certain way.

I could see atrophy happening in my right hand. First the mound at the base of the thumb grew flat, and became "mushy" as the muscle there shrank. The side of the thumb thinned out and between the thumb and first finger on the back became thin and stretchy. A furrow developed between the little finger and the ring finger also on the back of the hand, and the side of the hand there lost all curve. I was right-hand dominant, so it has been very difficult to lose strength and function.

I hope this helps a little, by no means will most be as affected as I have been, but wanted to help answer your questions best I could.

beth