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When RLS Moves to Other Parts of the Body

Last updated: September 2022

On Facebook forums, I see people asking if restless legs syndrome (RLS) can affect other areas of the body — their arms, hands, torso, or even face. Most of them are concerned about it, worried it isn’t RLS and is something else. Or that if it is RLS, why is it getting so much worse? And is that normal? I can relate to this experience, and I remember being in that position.

It was hard to believe it could be RLS

I had no idea what was going on when I went from having symptoms in my legs to having it in my arms, hands, and torso, and then at the painful intensity that I had it. It was pretty hard to believe it was RLS. The only reason I suspected it was was that a) I still had it in the legs, and the sensations all matched, and b) it still had the really distinctive creepy, crawly, want-to-just-peel-off-my-skin sensation that seriously drives you to move. And you hope that moving and shaking will give you some sort of relief, but with the extreme sensations, not so much. But you still feel driven to do so.

I thought there had to be something wrong with my nerves

I have no idea why it begins in the legs and can move to other areas over time, as it did with me, but then it clearly doesn’t with others. I have no idea why it got so much more intense to the point of painful, but it doesn’t with other people.

When it did with me, I didn’t know that all of the intensity in my arms, hands, and torso was restless legs syndrome. It seemed too severe. The fact that it caused pain threw me as well. However, even though it was painful, the sensations themselves still reminded me of RLS — just RLS that had gone completely wild, to the point I thought there had to be something wrong with my nerves.

What do you do when you find out it's RLS?

It might occur to you when you experience these symptoms in other areas and higher intensities that it could be something else entirely. You might wonder if this is something to really worry about.

If it even occurs to you that this is an RLS-related thing, you might go asking about it in forums or searching online for information about how people get RLS in other body parts. I certainly didn’t know you could get it anywhere else. Or that painfully. You might want to find something to blame for the situation — some sort of medication you’re on, some other condition, some circumstances you can change.

My neurologist finally confirmed it for me. I just wasn’t entirely sure before that. Surely RLS alone can’t be like that? Right?

RLS symptoms can pose more questions than answers

The thing was, before my neurologist said it was RLS and began to treat it, I just couldn’t believe RLS could be that intense or so painful, or even in that many places. It doesn't just disrupt sleep; it makes it utterly impossible.

And, man, that still makes me have questions: Why did it progress like that? Why do some people start getting it in other body parts? Why does it start increasing in intensity?

Why do some people have painful symptoms? How is that normal? Will the symptoms ever decrease again? How did it just get worse like that for some people and not other people?

I was left with more questions than answers, and yet another medication to take.

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