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What does muscle weakness feel like for you?
As LEMS patients, most of us deal with muscle weakness on a daily basis.
I’ve always had a hard time explaining to others what this feels like and how it affects me day to day.
Recently, I came across an article that I thought explained it pretty well. The article is about muscle weakness with MG, but I still think it fits.
“For me it feels like I’ve run out of power. In general, I feel it’s a huge effort to move when I’m very weak. When my legs are weak, they feel heavy and unsteady. I feel like I can’t move them or trust them to hold me up. The weaker I get, the closer and closer my steps get to each other, until I have to stop and lean against something or sit down.”(What Does Myasthenia Gravis Muscle Weakness Feel Like? )
Arm muscle weakness is something that’s not often talked about with LEMS, but for me sometimes that can be worse than the leg weakness.
The article also sums up that well, “When my shoulders are weak, I feel like I just can’t lift my arms. Like there are heavy weights holding them down. I get T. rex arms – I can use my arms from the elbow down, but can’t lift them away from my body.”
I also experience neck weakness on occasion where it feels like it’s very hard to hold my head up.
What kind of muscle weakness do you experience? If multiple, which one feels the hardest for you to cope with?
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2 Replies
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Hi. I feel fortunate that most of the time I have minimal upper body weakness. My proximal leg muscles are the most affected. I can feel like I have an extra 40 pounds attached to each thigh. There can be a lot of muscle resistance. Especially any uphill. Some days are better than others. I try to exercise as much as I can to be muscle tone strong. When I’m feeling tired and muscle fatigue, I just take it easy. Best wishes
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Hey @carol Oliver ! It’s so good to hear from you! 🙂
I rarely have arm weakness these days, but it is definitely more noticeable when IVIG begins to wear down!
I think most of us experience the proximal leg weakness the most! Uphills are a struggle for me as well! Another odd one I’ve noticed is that I have problems walking backwards.
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My legs feel and are weak, causing me to drag my shoes. Every day feels like you just left the gym after a heavy workout. IVIG and Firdpase help, but nothing so far cures or fixes it and makes it go away.
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