- Oct 20, 2019
- Los Angeles
I empathize with you Kim, though my own pain has not been at the level you describe. I wish you could find a solution. I am surprised and discouraged that you have pain even in the pool - I know you like being in the pool and so do I. I have had intermittent arm and leg pain -- I don't know if this is nerve pain or muscle pain or some other kind of pain -- all I know is that it usually happens after I've used those limbs for a little while (using a mouse for hours, or walking up the stairs a lot) which leads me to think this is pain from overcompensating for weak muscles. Frankly I think the conventional wisdom that this is not a painful disease is simply WRONG, and I wish this stereotype was removed from motor neuron disease discourse. I would imagine that painless journeys are few and far between.