“RLS is like a light electric current going down your leg—uncomfortable enough to make me move my legs to try to get rid of it. I’ve had it occasionally since my 40s. Sometimes walking helps; other times I feel like it’s mind over matter and I try to not move my legs when the feeling starts. However, that does not always work either.”
“For me, it’s like worms crawling in my legs. I have it 24/7, so I have to be on my feet most of the time. I get about 3 hours of various kinds ofexercise a day, even if it’s mostly stretching, which, at 72, has helped me stay ahead of old-age stiffness.”
“I’ve had RLS for about 25 years. It feels like you must move your legs. If I don’t get up from sitting or lying down, I’ll be in absolute misery with the tingling, electric-like impulses. Those of us who suffer from restless legs know there can be no thought of sleep when the symptoms appear. Some people, myself included, considered suicide before finding a physician and treatment that helps.”
“My symptoms are aching and burning with an incredible urge to moveimmediately. It began insidiously and wasn’t identified until I saw a TV ad for RLS medication and suddenly realized they were talking about me. With drugs, I can get to sleep—but not for long. The 3 to 5 hours of nighttime sleep make me foggy and often irritable. I do not sit during the day; I cannot attend a movie or theater event without having to get up. The burning and urge to thrash affects my arms and trunk as well. I am an ambitious traveler. On planes, I walk the aisles, stand whenever I can, and restrain the urge to ask the pilot to let me off—now. Realizing that I am not alone in my suffering is validating.”
“I’ve had RLS about 20 years, so bad that sometimes my legs will jerk and tighten up. I have to move around to try to help it. It’s so bad sometimes I think pain would be better.”
“I have probably had RLS all my life, but I first remember symptoms in my 20s. I dismissed those as a nervous habit I must have picked up from my mother, who, in retrospect, likely also had RLS. It was a weird, hard-to-explain crawly feeling in the bottom of my feet, making them unable to stay still. If I tried to ignore them, it was like hundreds of tiny electrical shocks on the soles of my feet, making them automatically jump and move. I could not control this, just as your hand automatically jumps back when you get a tiny electric shock. It could wake me up from a sound sleep.”
“It’s an urge from deep within. It’s hard to describe. I went to a movie last night. The urge to move was so overwhelming. It’s like a seizure coming on from the waist down. I used to call it the heebie-jeebies when I was a child. If you don’t move, it takes over on its own volition and you start kicking, thrashing, squirming. It plays havoc with one’s mental status: Is there hope it will ever end? If it’s severe, there’s nothing for me that will calm things down. It’s kind of like a panic attack is coming on, but instead of heart palpitations it’s the need to move my legs and kick and thrash.”
Interviews have been edited and condensed.