a woman sitting in her bed with a pillow over her face and flames around her legs

Those Restless Legs of Mine - When Did It Really Begin?

When did it all really begin for me?

I was diagnosed with restless legs syndrome when I was in my 30s. I'd had issues with sleeping since my 20s and had been prescribed sleeping pills by my doctors after a few lectures about dealing with anxiety appropriately.

I knew enough about my body to know the 2 things had nothing to do with each other. I did not sleep because I was anxious. In fact, I slept better when stress hit.

The ability to sleep was not my problem

Certainly, upon diagnosis, I knew that the problem all along had not been an inability to sleep, but a crazy pulsing going throughout my body that made me feel as though my insides wanted to come to the outside. The muscles in my legs wanted to fire. For some reason, my body fought against that happening.

So it wasn't me not dealing with anxiety well, and it wasn't simply being a "bad sleeper." I sleep very well when not having issues with those unrelenting restless legs.

I actually sleep quite well

In fact, I sleep so hard that I joke that someone could come into my house and steal everything I own, including my bed with me in it, and I would not wake up.

I slept through the eye of a hurricane once. I was in a hotel, and when I finally woke up and mentioned it to someone in the badly damaged lobby the next morning, they looked at me in disbelief.

My childhood bedtime ritual

I've been thinking lately, though, back to my childhood. My family remembers my bedtime ritual back then and how I reacted when I couldn't sleep; occasionally, someone will still joke about it. I hit my head against my pillow, over and over again, until I fell asleep.

My parents joked that it was almost to the level where they wondered if I knocked myself out in the process. Never fear – that truly was a joke. They were a bit on the overprotective side and would never knowingly let me injure myself. But it was a rather frenzied level of activity, and it happened almost every night.

Everyone in my family knew I did this. No one else did anything like it. Funnily enough, out of 5 children, I am the only one who had weird sleeping behavior, and I am also the only one who has been diagnosed with restless legs.

Were there early signs of RLS?

Why is this important? As much as we can learn about this condition, more people can be helped sooner. Maybe there were signs in our past that it existed that we never related back to the condition.

I’ve mentioned before that I am not someone whose limbs move much when I sleep. I have the opposite problem of many who suffer from this condition. I don’t believe my legs (or the rest of my body) move enough.

What frustration feels like

What led to my diagnosis was my annoyance with that internal feeling of frustration. It wasn’t anxiety; it was as though my body was turning on me and my inside wanted to come to the outside.

Doesn’t it make sense that a feeling of internal frustration could make a kid hit their head on their pillow over and over again?

I want to take less medication, not more

Many of us went through a period of years before we got a diagnosis for our condition and countless medications. As an adult, I know that medication is not enough. I need to make sure I am moving my legs on a regular basis.

I have chosen medication as a part of my treatment, but I want to find other ways to help manage the condition. The idea of taking more and more medication as it loses its effectiveness for my body does not appeal to me.

My behaviors in childhood are part of my RLS story

So let’s think back. Before you noticed you had symptoms that led to restless legs syndrome. Were there any other odd nighttime behaviors that may have given your parents or your doctors the ability to diagnose you sooner rather than later?

I truly believe hitting my head against my pillow is a part of my restless legs story, even though I had never connected it until recently. It’s good to know.

If I hear parents talk about their child’s weird sleep habits, I can ask questions and tell my own story. As I talk to doctors about my own condition, I can mention it to them. It’s certainly worth paying attention to. And studying.

Knowledge is power

Restless legs didn’t wake me up at night as a child, but it probably was a reason I found it difficult to go to sleep. Knowledge is power. I wish my parents would have been aware and known what was going on with my body.

It would have helped in later years when I felt as though my insides were being pulled outside in my own version of the Invasion of the Body Snatchers.

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