five people tell their stories about restless legs syndrome

Community Views: What Restless Legs Syndrome Feels Like

Living with restless legs syndrome (RLS) is not easy. To make matters worse, many people with RLS do not feel understood when describing their symptoms to others. People who have never experienced these painful feelings do not immediately grasp what it all means. This only adds to the frustration of symptoms that often wreak havoc both night and day.

To learn more about how you describe your symptoms and how they impact you, we reached out to our Facebook community and asked: “What does RLS feel like?”

More than 130 of you commented, and here is what you shared.

“Uncontrollable urge to move your legs.”

The most common response to this prompt was that restless legs syndrome is a never-ending feeling that you must move your legs. This sensation causes most people to keep moving their legs. Unfortunately, this also means that many of you feel like your body is never able to fully relax.

“An urge to move your legs.”

“Uncontrollable urge to move your legs.”

“That I am on a marathon around the world that takes all night.”

“Like your legs are marching but you are not moving.”

“Every night, you know that you will never sleep.”

Many of you shared that your RLS symptoms make it impossible for you to get a full night of sleep. In addition to the discomfort of RLS, many of you dread going to bed each night. The ongoing fatigue leaves most people with untreated RLS feeling unable to get through a day of work, school, or other duties.

“Every night, you know that you will never sleep no matter how tired you are.”

“I kick for hours while trying to fall asleep.”

“I have this so bad I rarely sleep more than 3 hours in a whole night. My arms do it, too. I have found nothing that helps.”

“A nightmare. You cannot sleep nor get comfortable. It is hell.”

“Like electricity shooting up your legs.”

Others of you described RLS as a tingling or itching feeling. You might explain it to others as a throbbing, aching, or sense of electricity shooting through the legs. It can be hard for people who do not have RLS to understand these types of sensations that affect you both night and day.

“Creepy, crawling, achy feeling that starts in the feet and goes all the way up the legs.”

“Aching and throbbing that never quits.”

“Like electricity shooting up your legs.”

“Never-ending torture!”

It is no wonder that several of you described RLS as torture. We all need to relax, sleep, and let the body repair itself. Sleep is one of the basic needs for physical and mental wellness. However, nearly every person with RLS has symptoms that cause them to lose sleep night after night. To not have control over your own body can also feel like a unique form of slow torture. As tough as these symptoms are to live with, there are some ways to find relief. These include exercising, baths, massages, and ice or heat packs on the legs.

“Never-ending torture!”

“Pure torture 24/7 with no breaks at all.”

Thank you to everyone who shared their experiences for this story. We appreciate your honest answers.

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