March , 2023

Restless Legs Syndrome: More Than a Sleep Disorder

By Richard R. Mahaffey, RLS Foundation Member

For decades, restless legs syndrome (RLS) has been referred to as a “sleep disorder.” Does RLS cause sleep issues? Absolutely yes. But to think that RLS is simply a sleep disorder is like thinking that a Boeing 747 wide-body jet airliner is simply an airplane. I feel obliged to spell it out: RLS is not just a sleep disorder for individuals with advanced or severe symptoms.

For many people like me who suffer from RLS, symptoms are not just a sleep disturbance that affects us at night. Without effective treatment, we would battle symptoms 24 hours a day, seven days a week. In the beginning, my symptoms started at night in my legs, when I was tired and trying to sleep. Then, over time, the intensity of the symptoms increased, and now they affect not only my legs but my arms, back, hips and neck.

An accurate description of how advanced symptoms really feel can only be described by someone who has RLS. I feel like I have to move my legs. And I do … I have to move my legs. When I do move my legs, I feel immediate, total relief for about three seconds. Then I have to move again. The feeling caused by severe RLS symptoms is misery and pain, and no amount of willpower can overcome the driving need to move. For me, the more tired I am, the worse the symptoms become. Sometimes I have to move my legs, arms and hips, and even bend my back to find a mere few seconds of relief.

Severe RLS symptoms have been described to me as a feeling of nerves moving under the skin … a “creepy- crawly” sensation that is overwhelming, all-consuming and miserable. You can’t keep from moving. You can’t be still. You can’t sleep. You can’t relax. You have to move. You feel it all over your body and it hurts.

For many individuals suffering from RLS (including me), symptoms are so severe that without effective treatment we would not be able to function. Without treatment, we would not be able to hold jobs, raise families and contribute to society in a positive way. We would not be able to sleep, use a computer, read a book or watch TV.

For others like me who have debilitating RLS symptoms, to characterize this suffering as a “sleep disorder” doesn’t begin to tell the whole story.

Richard R. Mahaffey received a Bachelor of Science in chemistry from the University of Virginia at Wise in 1973. He worked from 1973 to 2019 as a chemist, IT professional, author, editor and project manager. He was diagnosed with RLS in the 1980s and was a member of the Northeast Tennessee RLS Support Group from 2015 to 2018.