Rocking and Rolling: A Story of a Childhood With RLS

My story will probably sound familiar to others that have had restless legs syndrome (RLS) since childhood, though I think each of us has probably been affected in different ways.

When RLS presents at a very young age it is often hereditary, as it was in my case. Even so, as not much was known about RLS back then, I was diagnosed with growing pains.

RLS is hard for children to describe

I can understand why it is still so difficult to diagnose children with RLS. Other than my legs bothering me, I cannot remember what sensations I had as a child and I'm sure I wouldn't have been able to articulate what I was feeling. It wasn't until I was a teenager that I can distinctly remember a creepy-crawly urge to move.

How I found comfort as a child

I like to say I rocked and rolled my way through childhood. Rolling back and forth in my bed every night for what seemed like hours, I can remember my father checking in on me through the night and then hearing him tell my mother, "She's still rolling." If they were exasperated, they didn't show it.

During the day I did what my parents referred to as "bumping." While sitting in the car or watching TV, I would rock back and forth, banging against the back of the seat. You wouldn't think that all of this thrashing about would soothe and comfort me, but that is exactly what it did.

I realize now that in my own little way, I was finding some inner peace.

Difficulty coping with triggers at school

Leaving the safety of my own home and not being able to self soothe was very difficult for me. School was a big challenge, especially in my elementary years.

Prolonged sitting

Things were much more strict then and some of the rules seem so archaic now. There was no getting out of your desk without permission and certainly no reading corners or work done other than at our desks, which were in a long wooden row, all attached.

Dress codes

At the time, girls also had to wear dresses to school, no matter the weather, and unfortunately having cold legs is one of my biggest RLS triggers.

Concentration

Trying to concentrate while having to sit still was nearly impossible for me and my grades reflected that. I couldn't keep up in class and was often reprimanded for not paying attention. Looking back, it all makes perfect sense.

Now, if I try to sit through a movie or lecture when my RLS is acting up, I will remember very little of what I heard or saw. My brain is busy trying to cope with what my legs are feeling. As a child, I just thought I wasn't very bright.

Change is a good thing

Thankfully, in many ways, the world has become tolerant and respectful of all of our differences. Doctors are becoming more aware of restless legs syndrome and everyone has much more access to information.

Schools have become more accommodating to the needs of each student and allow for more movement around the classroom. And rarely do you ever hear "children are to be seen and not heard" anymore.

Did you have similar childhood experiences? What did you do to find comfort? Share your story in the comments below!