Limb spontaneously jumping

A question to my fellow CMTs, starting a few months ago if I laid down for a nap I would have any one of my hands or feet, or all four just “jump”. you know the sensation like you just wake from a dream of falling and your body does that “startle jump”?

This happens before I have fallen asleep and it kinda freaks me out. I used to have what I called “zaps” in my feet if I was sitting too long, like someone scuffed across a carpet and touched my foot somewhere, and obviously i would jerk my foot in response.

This new thing has absolutely no warning, no sensation, no pain, just one second lying peacefully in bed and my hand will jump into the air, and drop. It’s happened to both hands, both feet, or all at once.

I was diagnosed last year at 47 years old, so I’ve done well, living with the weird symptoms that slow onset CMT can do. But the last 6 months it feels like somebody kicked over the first domino and I’ve been on a roller coaster ever since.

So after all my blabbing, has anyone else had this happen to them?

Thanks and have a great day despite it all!

Yes. My legs jump quite often when they’re relaxed. I don’t really think about it, because it’s been happening for so long. But yes, I suppose it has something to do with CMT.


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Yes yes yes I have jumping an tremors. I notice it mostly when lying down. I will be laying in bed an all of a sudden my body will jerk an I’m looking like ive been shocked an my body is jerking around for just a couple sec. It is very scary an please know your not alone. Wish we knew why an if it will continue or get worse as time progresses. Hang in there sorry your experiencing this,sincerely Kelly

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Mine has backed off a bit, not happening as often. Not sure if it’s the sleep meds are kicking in before the “jumping” starts but glad it’s eased off.

Does anyone else take sleeping meds because of the constant nerve pain to get to sleep?