February 29, 2016

No one knows for sure why restless legs syndrome (RLS) acts up at night (although doctors do have theories), but sufferers know that it does. For many RLS patients, the main motivation to seek treatment is their inability to sleep well. Here, three patients discuss how the condition has affected their slumber—and how well their medication therapies have worked.

Molly used whirlpool jets to calm her restless legs.(MOLLY MCGARVEY)"I slept in the bathtub"
Molly McGarvey, 62, has suffered from severe RLS and sleep deprivation for most of her adult life. "During my early 40s, I could not sleep through the night for about four years," says the real estate agent in Morgan Hill, Calif. "I still wonder how I managed to make it to work and function. I'd come home from work, fall asleep on the couch, get up to go to bed, and then would be up all night."

"Most nights, I slept in the bathtub: Sometimes having the whirlpool jets going the entire night helped, and it was the only way I could make it through the night without going insane. There was nights I wanted to end my life, it was that bad."

Finally, after her marriage dissolved because of her constant moodiness and irritability, McGarvey says, she went to a sleep clinic and was diagnosed with RLS. She was given Dopamine agonists medication, which began to work almost immediately. "I remember waking up in the morning, having slept an entire night and couldn't believe I actually rested."

McGarvey's medication usually helps her sleep at night, but when her RLS is at its peak, even a pill can't calm her legs. "I function, but sometimes I am very tired because my RLS acted up the night before. Once it kicks in, it's in and out of the bathtub, walking around the house, anything to relax me and get my mind off the creepy feelings in my legs."

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Julie's "back problem" turned out to be RLS caused by iron deficiency.

Julie's "back problem" turned out to be RLS caused by iron deficiency.(JULIE VAUGHN)"I'd rather give birth again than relive what I went through"
About two years ago Julie Vaughn began to notice that she couldn't sit still for long periods of time. Soon, she was tossing and turning in bed all night long.

"Sleep was awful," says Vaughn, 49, an executive assistant in North Fort Myers, Fla. "No matter how tired I was, I woke up every few minutes with an unrelenting urge to move. I could only find one position that would give me relief, but it took up my husband's space. I was so grateful when he got up in the morning so I could sleep for just an hour."

More about restless legs syndrome

Vaughn had been diagnosed with type 2 diabetes about nine years earlier (a condition often associated with RLS), but has kept her blood sugar under control and hadn't experienced any complications from the disease. Instead she was convinced that her symptoms stemmed from a back injury she'd sustained a few months earlier.

After three weeks with very little sleep, Vaughn ran to her family physician, but he wasn't sure how to help her. Three doctors later, she finally got answers. "After listening to me jibbering about my back problem, a neurologist performed a blood test that detected extremely low levels of B12 and iron: the most common cause of RLS," Vaughn says. "When we started treatment to get those back to normal, my symptoms became much more manageable."

Vaughn now takes a dopamine agonist medication, but expects to decrease her dosage as her iron and B12 gradually rise to normal levels. "I am extremely grateful I finally found someone who knew how to treat this condition," she says. "I'd rather give birth again than relive what I went through."

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Donna chats with her online support group when she can't sleep.(DONNA MCLELLAN)"I rode my exercise bike at 3 a.m."
Afraid that people would think she was crazy, Donna McLellan kept her RLS symptoms to herself for more than 20 years. She didn't know it at the time, but some of the medications she took for other health conditions—like her chronic migraines, for example—actually made her RLS much worse, keeping her up for days at a time.

"That's when I was up at three in the morning, riding my exercise bike, running up and down the stairs, or outside walking up and down the road," says McLellan, 52, of Brattleboro, Vt. "It's one of the most lonely feelings in the world at three o'clock in the morning when you're trying calm your legs down and there's nothing to do."

McLellan's RLS has improved since she and her doctors started experimenting with different medications; dopamine agonists don't work for her, but she has found some relief with more traditional painkillers. No matter what medication she takes, however, she has yet to get a full night's sleep.

"The dog sleeps with me, but I usually hear him yelp and jump off the bed as I'm waking up, so I know I've been kicking him," she says. "So then I jump out of bed immediately and start walking around, because I know it's time to get up before it gets too bad."

Often McLellan takes her laptop out to the dining room table when she can't sleep; she doesn't like to type in bed because she knows that's bad sleep hygiene. She moderates an online RLS support group and often finds other members online to chat with at all hours of the night.

"Anything that distracts me from my legs will usually help me relax," she says. "But I have no idea what a good night's sleep is. I can't remember."