Big toe moving uncontrollably!?

[Moonwalker1967]

I have another new symptom together with my RLS and PLM.

All of a sudden my big left toe moves. Like a twitching movement. Uncontrollably and cannot stop it. Has anyone got the same symptoms and are they part of RLS or something else? By the way this only happens when tired or I wake up from my sleep.

[Floordefleur]

I have it sometimes. I think it comes from my Tr@m@dol. But after a very good deep massage from my groin and butt it's getting better.

[Merny5]

I have experienced the same but not sure that it is related to RLS

[Moonwalker1967 in reply to Merny5]

Thanks for your response. That's what I am concerned about. Is it some other disease? Parkinson or epilepsy or so? I am not on medication at the moment. Only on iron and vitamin C in the evening and magnesium in the morning.

[Merny5 in reply to Moonwalker1967]

I started thinking Parkinson’s. My toe was twitching for about 6 months and has recently stopped. So….????

[UncleFester]

Sounds like benign Fasiculation Syndrome (BFS). Muscle twitching for no reason. Harmless but scary when it 1st happens. My toes move and twitch as well as my calve muscles.

[Jimbo77 in reply to UncleFester]

Same here. It comes and goes for me.

[Moonwalker1967 in reply to Jimbo77]

Glad, I am not the only one. Do you think it's something to do with the RLS? Have you got any other diseases?

[Jimbo77 in reply to Moonwalker1967]

Hey there. Sorry for the delayed response. Yes, I do think it has to do with RLS. I notice it primarily when my RLS is bad for a few days. Strange for sure.

[Guitarpickin]

I get this too. When I first found this site, it was happening all the time, every time I was at rest. And would last minutes to hours. The big toe would sort of “snap”, as if someone had wrapped a rubber band around it and pulled it taught…I don’t know, I can’t put the sensation/movement into words. And my other toes move/moved too, more gently, in ways I could never consciously, purposefully move them. I had tons of studies and numerous MRIs and nothing definitive was determined. My neurologist settled on spinal myelopathy causing all my weird neurological symptoms. I don’t know if I agree with that, but I do believe those toe movements, the RLS, the PLMD and PLMS, and all the other weird, inexplicable sensations and unintentional movements in my body are related. But who knows. It’s nice to learn other people have the toe thing…though I wish none of us did.