three polaroid photographs of legs and an arm with electric ants crawling on them

Hey, What Does Your Restless Legs Syndrome Feel Like?

I was asked recently what my restless legs syndrome feels like.

I haven’t actually been asked this before, mostly because no one really knows I have RLS. They know more so about my chronic migraine disease and fibromyalgia, and I’m not about to list my medical history. (“And... so here is my medical resume you may want to reference if you want to be my friend... Please make note of Addendum A and B.”)

Someone asked, "Does it feel like you have to move your legs?" And I was like, "Yes and no." Yes, because you do feel like you have to move. Definitely. But it may or may not help. And no, because it isn’t just your legs.

Restless legs syndrome isn't always just in the legs

I told her that it may be called restless legs syndrome, but that name was poorly chosen — because it can be restless arms. Restless hands. Restless torso. Restless body. I added that sometimes, lately, I get it intensely in my hands, and I just shake them like nuts. As if by doing so, I might just 'shake it like a Polaroid picture.'

It isn’t that you just feel like doing a midnight tap dance, but rather, it is the sensations that drive you to move to get some sense of relief. It is in the very particular nature of those specific sensations, the ones that just drive me up the wall.

I described the sensation as 'electrified ants'

Then it came to actually describing the specific sensations.

Well, we don’t all have the same sensation, I don’t think, or even the same intensities. Even so, I was sort of at a loss with describing even the average sensations I get, let alone the painful level of them.

So I said it was like electrified ants crawling under my skin, driving me to move my legs. I said it was like a crawling nerve sensation.

I forgot to mention that 'pulling' sensation that definitely comes when I resist moving and try to hold still for too long — it almost drags my muscles, like toes up. It drives you insane, I said, so that you have to move to try and relieve it, and that is where the 'restless' comes in.

Sometimes we have to just use metaphors

I have a lot of nerve sensations and chronic pain, and none of them make me want to do the Hokey Pokey. More the opposite, actually.

I found there was a distinct lack of words to describe the sensations. And I found myself sort of seeking out metaphors. I once described it as "jangled, jumbled nerves dancing under my skin." Sometimes, with things like this — painful, aggravating, intense sensations — words just escape us, and we have to just use metaphors and try to grasp at them.

Shaking out the 'lightning bugs'

I am going to have to come up with something for these scenarios. "So, it’s like if you had a thousand lightning bugs under your skin, but they’re on fire and they have to get out fast. So you need to really, really help them out by shaking like crazy, because that doesn’t feel cool at all. You know? That feeling."

Something like that.

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