What Does Restless Leg Syndrome Feel Like?
Key takeaways:
Restless leg syndrome (RLS) can range from being mildly annoying to severely debilitating.
RLS is not a mental health condition. It is a nervous system condition.
There are medications available that can help manage and alleviate RLS symptoms.
Feeling antsy or feeling the need to fidget is a common experience. Restless leg syndrome (RLS), however, is more than just being antsy.
Many people with RLS feel an irresistible urge to move their legs. It can also happen in the arms and other parts of the body. But it’s not the same as feeling the need to fidget.
RLS, also known as Willis-Ekbom disease, is not a mental health condition. It is a nervous system condition. It can affect your sleep, mood, and ability to concentrate.
Common symptoms include:
An irresistible urge to move the legs, especially while sleeping or trying to fall asleep
Leg twitches
Worsening symptoms at night
A crawling sensation in the legs
Aching, itching, or electrical sensations in the legs
But how does it feel? Here’s how three people with the condition describe the experience.
It’s not all in your head
Kelly Beasley, a 49-year-old entrepreneur in Tucson, Arizona, has had RLS since around 1997. Her symptoms started with an all-consuming sensation that would happen at night.
“I felt like I had adrenaline running just through my legs,” she says. “It’s like there are ants crawling around inside my legs.”
When she would talk to people about her experience, she says she felt like people would dismiss her concerns. That left her frustrated.
“So many people acted like I was making it up or like I was exaggerating about it,” she says.
The crawling sensation used to keep Kelly awake at night. Now, she says, she’s mostly able to ignore it.
Don’t be afraid to seek medical attention
LaTrenda Ross, a 57-year-old social services worker from Jersey City, New Jersey, was diagnosed with RLS 11 years ago.
“I had been struggling with symptoms for a while before reaching out for assistance,” she says. LaTrenda had seen commercials about the condition. And she read things about RLS that she felt matched her experience.
Her biggest concern was not being able to sleep — something she hadn’t experienced before.
“I would go to sleep, and then my legs would just start moving kind of on their own,” she says. She was having a hard time making it through the day because she was so tired. This was out of character for her, so she went to the doctor.
Her doctor prescribed Ropinerole to treat her restless leg symptoms. LaTrenda says the medication is not perfect, but it does help.
“I know it works because I take it 7 days a week,” she says. “I have tried to skip it, and it doesn’t work out for me. I can’t sleep without it.”
The most important thing LaTrenda would like others to know is that it is important to seek medical attention.
“I needed to sleep, and I couldn’t. I couldn’t function,” she says. “I knew I needed to seek attention.”
Restless leg syndrome can severely affect your daily life
Shannyn McCauley, a 34-year-old health coach, lives in Maryland, near Washington D.C. She was diagnosed with RLS more than a decade ago. She knew about RLS because her dad had it.
Shannyn says her symptoms were a mild inconvenience at first, but they started to get worse.
“When I would lay down to go to sleep, it would be a little tough,” she says. “It feels like my veins are like worms and they are wiggling. It feels like there is just something moving around inside of my legs.”
It started to affect her ability to stay asleep.
“A couple of years ago, I didn’t sleep for 3 days in a row,” she says. “I had a breakdown and couldn’t function.”
For Shannyn, the condition affects her daily life.
“Going up and down stairs is difficult,” she says. “It feels like my legs are really tired. When I try to work out, things like leg presses and squats are difficult because my legs feel overly fatigued. I feel like the constant sensations make it difficult to enjoy life sometimes. Car rides and plane travel are also difficult.”
As far as finding relief, Shannyn says her providers have recommended everything from over-the-counter Motrin to dopaminergic medications. She didn’t like the dopamine agonist because it made her extremely nauseous, she says. She has also been prescribed Lyrica, an anti-seizure medication she liked better.
Lyrica “helped a little,” she says. “If I was at a 10 with suffering from symptoms, it brought it down to like a 7,” she says.
Shannyn now finds relief by using medical marijuana.
What does the doctor say?
Patricia Pinto-Garcia, MD, MPH
Medical Editor
It’s not clear why some people develop RLS. Studies show that people with RLS have changes in their central and peripheral nervous systems. They also have low iron levels in their brain, even if these levels are normal in their blood.
Scientists aren’t sure how these changes lead to RLS, which makes finding the right treatment more difficult.
There are many options for RLS treatment. And like the stories above show, you may need to try a few different options before finding something that works best for you.
Why trust our experts?
