What I Know Now About RLS

Restless legs syndrome (RLS) is a neurological condition that causes uncomfortable sensations that are only relieved by moving. Most commonly it is felt in the legs, but people feel it in all sorts of places.

I didn’t know about that when I was growing up. I just thought I was weird.

A flurry of activity under my skin

My bed sheets were always a god-awful mess by morning. I kicked and tapped my toes every night. And every day. And every moment that I was supposed to sit still. I was always massaging and stretching out the muscles in my back and legs, pushing my knuckles in as hard as I could.
I was asked repeatedly, by a lot of different people, to keep still.

There was a lot of activity happening just below the surface of my skin. I could stare and see nothing, but I would swear there was a swarm of tiger beetles just marching down my leg. I couldn’t see them, but I could feel them. Crawling away under my skin. Burrowing through to my bones.

And I had to move. I had to shake my leg and jiggle it up and down. I would love nothing better than to do a set of stretches on the floor. I always walked really fast to try and outpace the swarm of beetles in my legs. If I was forced to walk slowly I would feel on edge — it drove me batty.

Was this happening to anyone else, or just me?

All this happened for decades, and the marching beetles got stronger and more prevalent. Was nobody else like this? How did people sit still? I could see other people just enjoying movies without having to jump up and down in their seats. I would sit on airplanes and marvel that the person next to me just read a book without moving. How do they do that? It was all a complete mystery to me.

Then, out of the blue in my 40s, I mentioned my symptoms to a doctor, and voilà! I heard the name restless legs syndrome, and I stopped berating myself. I had a condition. That was the problem.

What I would give to my younger self

I wish I had been able to tell my younger self that I wasn’t just being difficult and annoying. I would have reassured little me that some things are out of our control.

I could have taught younger me about the importance of avoiding stimulants like caffeine and alcohol, and how some medications like antihistamines just made everything worse.

I would buy younger me a foam roller and a spiky massage ball because they feel great when the restlessness sets in.

I would teach younger me patience and acceptance – there are some things we can control in life and some things that can only be managed. Learning to manage RLS has been a part of my life.

I would encourage my younger self to keep pursuing knowledge of the condition and to talk to medical professionals – pharmaceutical support and has made a world of difference in my life.

Everything will work out okay in the end

Most of all, I would reassure young me that it’s okay.

RLS is not a choice, and the irrepressible need to move is something I have learned to live with. I manage my days around RLS – it doesn’t control me. I still go to the movies and travel – I just take medication when necessary. I have modified my diet and checked my iron and magnesium levels.

If there was one thing I would say to younger me about RLS, it’s that everything will work out okay in the end.