Weird muscle weakness with CFS?

Posted , 3 users are following.

Hi All-

I’ve been having a strange symptom lately and wondered if any of you could tell me if this is a familiar thing with your CFS. 

About two months ago,  started waking up in the mornings feeling my legs were weak and shaky on the inside...nothing I could physically feel outside. It would usually last all day, but at times would randomly go away for a few hours or half a day. That has been consistent for two months. Then, about 2 weeks ago, I started getting numbness and tingling in my left leg and my right forearm and hand (first my leg for 4h, then my arm a couple days later for an hour or two). After that, my leg numbness and tingling has returned once for a couple hours...but my hand and forearm has remained feeling weak and different. It feels like after your hand falls asleep and starts to wake up...kind of slow and harder to move. I’m able to move it and use it fine, but the feeling is very odd. As a side note, my arm continues to fall asleep several times a night when I sleep with my usual hand under my pillow position  (which has never happened before). So, I don’t know if my hand feeling is reacting to having that happen all night. 🤷🏼??? Anyone had this with CFS? Especially, located to one or two extremities?

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6 Replies

  • Posted

    I don't know if this is exactly like what you're experiencing but with my CFS flare-ups I often get the sensation that my limbs are extremely heavy and hard to move. It's not like numbness or pins and needles though, I think it's just weakness. It feels like I'm trying to move through mud when I lift my arm for example. It's very unsettling!

    I also know exactly what you mean about feeling like you're weak and shaky "on the inside". I definitely get this in my legs, and it makes me feel like I can't safely walk. I've never fallen over but I feel safest if I can hang onto something or walk close to a wall just in case.

    My arms have always fallen asleep if I lie on them during the night so I can't really comment on that but numbness and tingling sounds like it might be a nerve issue, which seems common with CFS (nerve pain especially). Maybe try sleeping in a different position where your hand isn't under the pillow, and see if it makes any difference?

    • Posted

      Thank you, grailmoth. I have tried that. Unfortunately, unless I completely have my hands down at my side (can’t sleep like that), it still occurs. ??

      Totally understand your description. That was happening with me a few months ago, it still happens...especially when it’s hot or I’ve exerted myself. 

      The muscle shakiness is unsettling...and some days I feel it everywhere. 🤦🏼???

    • Posted

      You just reminded me of something that might be relevant...or it might not...but I'll mention it anyway just in case!

      I have chronic shoulder pain in my left shoulder (near where the shoulder joins the neck) due to extremely tight muscles on that side of my body. I've noticed if I raise my left arm even halfway, I soon get tingling and pins and needles spreading all the way down the arm. I first noticed this during yoga trying to do poses like cactus arms or shavasana. I think it's due to nerve compression because my muscles are so tight  on that side. I wonder if something similar could be happening to you when your arm is bent for sleeping? I kind of imagine it being raised about the same amount that would start to cause tingling for me. Just a thought

    • Posted

      Hmm...interesting thought. I do have chronic pain in my scapula area...but it’s on my left and my N/T is in my right. Though, I suppose if one side is tight...it’s quite possible. 🤔

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