Shelley,

This sounds like a real TOS typical sneak attack.

If I do my recumbent bike which doesn't move my upper at all, at 6 minutes my upper turns red, swells, and feels like I'm going to burst. I have to stop, and how much longer I go equals how much more pain I will have in 6 to 12 hours, and may last as long as 5 days in bed.

When I feel up to a two block walk, (every week or so), I make myself do it, and then that same thing happens 6 to 12 hours later.

It is very frustrating to try to exercise, when you get the swelling, pain, muscle jerks, and NOW I can get actual paralysis (not pain that stops me, but actual paralysis) of the arms and legs that can last up to 4 hours. After the walk, my legs / arms will feel "ropey", and then, within a few minutes, paralyzed. Both of my docs said it IS TOS for sure, and explained something about damaged nerves.

But I'm not quitting. Lately, I've been able to do it almost every day. I've had TOS 4 1/2 years, with my surgery just over a year ago, so it's really WEIRD to be getting these new abilities - however small and slight.

Don't give up sweetheart, but also, don't hurt yourself too much. Only you know what that point is. Go along to that point, suffer "a little" only if possible, and keep at it.

TOSers need to try to exercise to fight for our general health, but not so much that we're in a constant high pain flare. What a dilemma. What a condition, huh?

At least we do not have Hodgkins - for that, we can be so grateful...Yes, this is horrible, but there are worse illnesses, so I say, "thank you God for not giving me more than I can handle." I do not know how the Hodgkins patients face their disease.

So let's stick together and keep talking!!!

PS Lyrica caused me to gain 50 lbs. and my blood sugar to go from under 100 to 400 - diabetes II. I couldn't see. Beware of Lyrica. It didn't do anything for me, either. I prefer Topamax at ONLY 50 mgs., as well as Cymbalta. Just FYI, please talk to your doc and make your own decisions. Research Lyrica here - it's got a pretty bad rap here.