RLS: The Beginning of an End?

Content Note: This article discusses suicide. If you or a loved one are experiencing suicidal thoughts, there are resources available for support, including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat.

A few weeks ago, someone in my RLS circle died. Restless legs syndrome killed him! I know the question on your mind. Can restless legs syndrome cause death?

He went from a complete stranger to being like a brother to me

Let me circle back to the beginning. For the purposes of this article, we’ll call my beloved friend Jerry (not his actual name).

I met Jerry in 2015 when I ran a now-defunct Facebook group for people with restless legs syndrome. We would exchange messages frequently, and over time, we became real-life friends.

We would discuss our health often, what we were currently trying, what our doctors were currently doing to help, etc. Over time, Jerry went from being a complete stranger on Facebook to being like a brother to me.

His was one of the worst cases of RLS I've seen

Jerry had had RLS since age 13. It had started at the same time puberty hit and had progressively gotten worse. His was one of the worst cases of RLS I’ve seen to date.

He could hardly sit still for more than a minute. He found it difficult to hold down any job for more than 2 months at a time. Couldn’t get his diploma as he couldn’t sit long enough to complete it, which is terribly sad, as he was one of the smartest people I’ve had the good fortune of meeting. He never drove, either.

RLS took over every part of his body. He was one of the few who, like me, also had restless genital syndrome. His hands were also affected and were almost as bad as his legs.

Daily life and family challenges led to anxiety and depression

It was so bad, he almost dropped his newborn the day she was born! He was so scared that he never had the courage to pick her up again. His wife kicked him out of the bedroom because not only was he not helping her with the baby, she couldn’t sleep as he was constantly moving on the bed.

Eventually, his wife couldn’t take it anymore, and she filed for divorce. I could go on and on, but you get the picture.

Anxiety and depression set in, and my friend couldn’t take it anymore and ended his pain. According to him, RLS had taken everything from him.

This is why I get upset when people dismiss RLS

I am deeply sad; I miss him, and I wish there was something I could have done. I want to scream and shout. I want to be mad at him — matter of fact, deep down, if I let myself dwell on it, I might actually be mad at him.

However, I totally understand. Restless legs syndrome has dealt me such a very difficult hand that sometimes I'm not quite sure how I've managed to stay relatively sane. So, in some ways, I get it. It is also why I get really upset when people casually dismiss RLS or people who have it; because until you've walked a mile in our shoes, you will never truly understand. Even within the RLS community, some have it worse than others, I've come to realize.

So no, restless legs syndrome may not be life-threatening, but severe cases can disrupt one’s life, causing insomnia and triggering anxiety and deep depression.

Check on your friends and above all else, please be kind.

Have you faced social, emotional, or mental health challenges as a result of living with RLS? You are not alone. Talk to your doctor, reach out to supportive friends and family, and reach out to your community for support when you need it. We are here for you.