Twitching toes: I've had RLS for many... - Restless Legs Syn...

Restless Legs Syndrome

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Twitching toes

patchworker profile image
10 Replies

I've had RLS for many years, but now my friend says she has it too. But her symptoms are

toes that "stand up and dance" and she can't stop them. That doesn't sound like RLS to me. Has anyone else had that? She says they twitch and keep her awake at night.

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patchworker profile image
patchworker
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10 Replies

I suppose one of the questions to ask her is, does she get relief from the twitching toes when she gets up and walks, as we know by moving we get some relief from RLS. Staying in bed isnt usually a choice when having RLS. It could be a nerve thing that is making her toes twitch.....

Kaarina profile image
KaarinaAdministrator

My toes do that since having had a spinal op - neck end. It is involuntary, very annoying keeps me awake or wakes me up and only happens when at rest. If I stand or move around it goes. My feeling is this is to do with the spine/nerves in spine and nothing to do with RLS which I do suffer with but I get very long periods of time with no RLS symptoms for which I am HUGELY grateful.

Niatz profile image
Niatz in reply to Kaarina

I have the same problem that you have my neurologist told me it comes with the spine,have you find a solution?

Kaarina profile image
KaarinaAdministrator in reply to Niatz

Niatz, No, unfortunately not.

RobinBeltrami1 profile image
RobinBeltrami1 in reply to Niatz

I have it all day long from rising to bedtime. It only stops when I fall asleep. I wish I knew why. I do have peripheral neuropathy.

Joyserafin profile image
Joyserafin in reply to RobinBeltrami1

My toes twitch all day long as well. It only stops when I go to sleep. It has been this way for years except now the top of my foot feels like it has arthiritis and I think it from my toes moving so much

Kaarina profile image
KaarinaAdministrator

With me it is either one foot or the other where the toes start to dance, never both feet at the same time so I am thankful for small mercies! ;) It is not every time I am at rest which again I am most grateful.

Wendy1 profile image
Wendy1

I have twitchy toes that drive me mad sometimes! The neurologist said that this was a sympton of the rls I suffer from, along with the 'dancing' legs! The ropinirole works some of the time. The rest of the time I just have to keep moving whatever the time of day or night!

amyfleurBT profile image
amyfleurBT

I have twitching toes for about 10 years. I had an operation on one big toe, that seemed to be the starting point. I have since had 4 operations on various toes, and 6 fractures altogether. Anyone else had twitchy toes? Except when I am walking, it goes on all day long. nb. I am on Amitriptyline for headaches and Prednisilone (since 1992) and until recently Metoclopramide for IBS.

OldWrestler profile image
OldWrestler

I have had creepy crawlys(my description) between toes since I was ten. It runs in the family Mother, Nieces, and Son. It normally starts after falling asleep for 1-2 hours and wakes me up. My doctor says its part of rem sleep. I'm currently trying Ropinirole my doctor suggested. Its used for Parkinsons. I don't think its helping much. I have found that certain foods containing high salt and spices seem the make it worse. It normally affects either foot, some times right or left foot. When it comes my feet feel warmer than normal and I want to cool them to make it stop. What I find is the most effect relief is icing my toes, including putting ice cubes between my toes. When I return to bed it subsides and I'm good for the rest of the night. Recently I've taken 3 Advil and that seems to work too. You don't want to do that everynight. I from time to time do not have the problem and that's when I believe it's what I ate. In severe cases its affects my hands also. I hope I provided some ideas to try. Good luck.

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