Restless Legs Syndrome (RLS) is a common disorder that disrupts sleep and runs in families.
Uncovering the Mysteries of Restless Legs Syndrome
Creepy crawlies. Heebie jeebies. The jitters. Ants in the pants. Jimmy legs.
The feeling evoked by Restless Legs Syndrome (RLS) has been described in many ways by those who suffer from the surprisingly common, yet frequently misdiagnosed, disorder.
“So many people say their doctors have laughed at them or told them it’s all in their heads, that they’ve given up,” says the Reverend Ed Murfin 60T, who has had RLS since he was a child. “Left undiagnosed and untreated, RLS destroys your quality of life.”
As much as 10 percent of the population is estimated to have RLS, which is characterized by an inability to sit still, a tingling or creeping sensation in the legs while lying down, or a compulsion to move one or both legs even while resting. Preliminary research has shown that RLS is a neurologic movement disorder with genetic underpinnings, but much about the syndrome remains unknown.
Associate Professor of Neurology David Rye, medical director of Emory’s Sleep Disorders Center, has conducted groundbreaking research on RLS’s genetic link and intimately understands the devastating nature of the disorder.
“People with symptoms of RLS often suffer for years, without even the language descriptors to make family, friends, or physicians understand what they are going through and how it negatively impacts their sleep, mood and quality of life,” Rye says. “As someone who is both an RLS sufferer and a physician who sees patients with the condition, I understand firsthand the need to empower people with basic knowledge about RLS.”
Murfin may be one of millions, but his experience with RLS has been one of isolation and frustration. “At school, I was always fussed at for fidgeting and sent to stand in the corner. I was told it was ‘growing pains,’ and that I’d grow out of it,” says Murfin, who instead found that his symptoms increased with age.
So he developed coping mechanisms: As a pastor, he was able to be on his feet a lot, giving sermons, visiting church members, and working around the church. He avoided plays, movies, and lectures. On airplanes, he would walk the aisle. Nighttime, though, was torture. Murfin tossed and turned in bed, often getting up to pace around the living room. His wife, Beverly, eventually moved to a separate bed and then to a different bedroom.
“When our family would go camping, the kids would kick me out of the camper because I was keeping them up. I would walk around the campground at 2 a.m.,” he says. “It was miserable.”
Doctors told Murfin he was running on “nervous energy” and needed to quit taking his parishioners’ problems home.
In the early 1990s, after going to a sleep clinic near his home in Jacksonville, Florida, Murfin was finally diagnosed with Restless Legs Syndrome. But his doctors didn’t know how to treat it effectively. He was prescribed a variety of drugs, including antidepressants and antipsychotics, but his symptoms only got worse, and his mental health suffered.
Desperate, he researched the disorder and discovered there was a national support group, the RLS Foundation (www.rls.org). He attended the national conference and became the North Florida/South Georgia group leader., and was recently appointed to the national advisory board. Through the foundation, Murfin met Rye and neurologists who specialize in RLS.
Rye is investigating the genetic contributions to RLS via a unique collaboration between Emory and a biotech company in Iceland—deCODE Genetics. He has found that RLS tends to cluster in families. “Leads found in Iceland are being confirmed and further explored in more than three hundred RLS subjects seen in my clinic, which draws from the greater Southeast,” he says.
Dopamine-altering drugs used to treat other movement disorders, such as Parkinson’s disease, can be helpful in treatment. Ropinirole (Requip) is the only medicine approved specifically for the syndrome. Mild narcotics, anticonvulsants, and sleep aids also are used.
Murfin, now seventy-one and retired from the Florida Conference of the United Methodist Church, has found a combination of treatments that lessen the severity of his RLS. “Awareness is spreading. It’s getting easier to say you have Restless Legs Syndrome and be taken seriously.”—M.J.L.