Maybe the "recumbent position" is the cause of my spasms and jerking in my low back and legs when I am in bed. But it I stretch ( a lot) before bedtime, this happens less, much less, I must say.
I used to have more parathesias after exercise, but since I have become more active lately, the parathesias (tingling, burning) are less, much less. What happened to cause me to be more active is this. I am having tooth trouble and this has caused eating to be less of a good time for me, therefore I automatically cut back on portions. I lost 11 pounds in the past two months, gradually. My ankle swelling ceased. I feel lighter and easier to move. So I have been more active. Only my erythromelalgia in my feet holds me back from exercising more. But I realize there is a limit to this spurt. If I had no foot pain and walked for miles, well, I'd be in the same situation some of you are, weak and then stiff and then in spasm. So it's all a matter of building up and knowing how far you can push it. I was a dancer in my youth, very athletic, so what I am doing now is nothing compared to that.

I edited this post to re-emphasize how important stretching is. I got my stretches from several sources, several PT's over the years and several chiropractors. I have increased my arm and hand strength by self-massaging the stubborn knots in my legs, a never-ending task.

At our age Mariel, if we don't stretch it and use it, we lose it.
Thanks for the tip.

Doydie,

A couple weeks ago I went for a walk on my lunch at work, it was a 20 minute walk across the highway over to a store to pick something up then back to work. That night I had the worst ever leg spasms when resting and they woke me up all night. Then the MS symptoms started to flare up each day.

I used to be able to take a 30 minute walk almost every day. One thing that was always essential for me was starting out very slow and building up speed gradually, then stretching afterward. Each stretch should be held for 45 seconds to get the full benefit, according to my past MS neurologist. So maybe if you do this it will decrease the ill effects for your next workout.

I am very proud of you for losing weight and getting in shape. You're an inspiration to me.

I've been researching online for like an hour now, idk why I never did it before (i was a mere 18 year-old then i suppose...).

I know the feeling having ppl doubt your condition (this is basically the story of my life :/). I've met countless doctors over the years, some of the most informative and influential docs I've met with are Dr. Lee at Seattle Children's (for pain management), Dr Elliot Krane is a pure genius about EM too. I went to this pain management program at LPCH (Lucille Packard Children's Hospital) a little over a year ago, and they did a lot to help. It was pretty intense: all day every week day, PT, OT, Psych, and of course school at the hospital. You learn a lot about PT you can do once you get home, how to go about life (cooking, cleaning, etc), and everything else you can think of. It really helped, I just need to make sure I keep up with the PT exercises on my own... .

But aaanyways, I've been having really bad, sporadic spasms recently. Some days I wont have any, then for hours another day, they're practically endless, It makes it so I can't focus on a thing! Idk if it's muscle spasms, nerve spasms, or some other thing. I just know it hurts like a *****. I have noticed they stat if one of my feet (in my toes usually) are really cold; i wrap it in a sock or a warm towel to help, but i usually son't catch it before it escalates. Hopefully I'm not alone in this. After reading all of your guys' posts, I'm gonna give Magnesium a shot.

I find it really hard to do exercise normally. I'm limited to non weight-bearing things like lifting weights while seated, crunch/planks; that sort of thing, and mainly swimming. I can do this cause the water feel good on my feet, and it's non weight bearing.

Oh! and one more thing: On here some people mentioned how they have a mix of EM pain and nerve numbness. There's a crazy place in Bellevue, WA called Bellevue Health Center I think or something like that, where they use these red lights to help with the redness and numbness of you have any. It's pretty expensive so I could go for very long, but I WAS slowly seeing results over the maybe month and a half I was there (twice a week).

~Kelsey

Hello larson_kelseym and welcome to NeuroTalk

You have mentioned ME several time in your post, are you referencing Erythromelalgia? Or ME/CFS?

This forum is the Multiple Sclerosis(MS) forum. If you have Multiple Sclerosis this is the forum you want.

If you have Chronic Fatigue Syndrome (CFS/ME) this is the link to that forum
http://neurotalk.psychcentral.com/forum12.html

There is also a General Health Conditions & Rare Disorders forum:
http://neurotalk.psychcentral.com/forum2.html

Best wishes!