Carolyn,

I have had issues with my back since well before diagnosis. In fact, I went to the ER once when we lived in the midwest for chest pains that turned out to be due to para-spinal muscle spasms. And like you, I also cannot be on my feet very long without experiencing pain that affects walking.

Mine is due to a combination of things: Dystonia of large muscles in the torso that pull me to the left, rigid muscles around my spine, and a slight spinal curvature.

Sometimes one false move will create torso spasms. If I stand (doing housework, shopping, cooking) or sit at the computer for too long, I am pulled to the left, and my weak spine goes with it so that my back "goes out." IF I don't wait too long and am not too rigid, a well-placed hug from Bill sometimes pops it back in place and offers some relief, or I can get on my back on the floor and get it to go back. But the muscle rigidity remains and sometimes the muscles are just too tight for that to happen.

I have been taking one Tylenol with Codeine every morning now for about 5 years and that seems to prevent the pain from escalating. I rarely take another during the day and try to cope by changing what I am doing. I find that bi-weekly massage, yoga, and some careful torso stretches help.

Good luck!

Judith