Too many sleepless nights caused by a “pins and needles kind of feeling” in her lower legs had Merideth Hartman so unhinged that she wondered if she’d be better off having her legs cut off below the knee.
The 49-year-old wife of a retired firefighter sits in an examination room at the University of Nevada School of Medicine Patient Care Center and discusses how the condition known as restless legs syndrome has affected her life.
Dr. Eric Farbman, the director of the medical school’s movement disorders center and the neurologist who found a way to finally bring Hartman’s lifelong condition under control with medication, listens to the mother of four children.
“I started getting panic attacks just before bed because I knew what was coming,” she says. “It was terrible. It got worse as I got older. … You get to the point where you think you’d be better if your legs were cut off. … I was always so tired from lack of sleep. … When I first went to the doctor for it, they acted like I was crazy.”
A neurological disorder, restless legs syndrome is often characterized by patients in different ways, such as a throbbing, pulling, burning, “bugs crawling” or “pins and needles” sensation combined with an overwhelming urge to move the legs.
“It’s often very difficult for them to describe,” says Farbman as Hartman nods in agreement.
Because moving the legs relieves the discomfort, and symptoms occur primarily at night when a person is relaxing or at rest, someone suffering with the condition frequently spends at least part of the night pacing the floor.
“Most people have a misimpression of the disorder,” Farbman says. “They think the legs are moving involuntarily, but moving them just helps the patient feel better. And while most people with the condition have it affect their legs, some people have the sensations affecting their arms, trunk or head.”
It wasn’t until 2005, when the Food and Drug Administration approved the first medication for the condition and TV ads soon flooded the airwaves about a drug touted to keep the disorder under control, that most Americans had ever heard of restless legs syndrome.
At first, Hartman, whose primary care doctors never diagnosed the condition, thought the ads and subsquent media stories about the syndrome would be of some comfort to her, that people would better understand the strange symptoms she described and appreciate what she had long gone through.
But it wasn’t long before the ads became a staple for the nation’s comedians, particularly when some doctors critical of TV advertisements for drugs cited restless legs syndrome as a prime example of “disease mongering,” where drug companies deliberately enlarge the market for a product by convincing people that they’re sick and need treatment.
Within a year of FDA approval of Requip for treatment of the syndrome, sales of the drug, originally used to treat Parkinson’s disease, had doubled, from $165 million in 2005 to $330 million in 2006. Two Dartmouth Medical School researchers wondered aloud if a “normal condition” had suddenly become a “disease to be treated,” one that clinicians “overtreated with powerful brain-altering drugs.”
Despite the fact that neurologists and officials with the Restless Legs Syndrome Foundation said the condition was dangerously underdiagnosed and unrecognized — Farbman notes that people who regularly aren’t getting sleep are a danger on the roadways and at work — Hartman decided to largely keep quiet about her condition.
“I would not talk about it to many people because of how they were reacting to it,” Hartman says. “It was just hush-hush between my husband and me. … Some people thought it was all in my head.”
Concerned that her daughters may also have the condition, Hartman no longer wants to be secretive about the disorder. People need to get help from doctors who understand the syndrome, she says.
Although TV advertising of drugs for the condition largely stopped five years ago after the medications became generic, Farbman says he still sees “his share of patients” for the disorder and points out that publicity about the syndrome was helpful to primary care physicians, who frequently would misdiagnose patients and treat them incorrectly.
“More people are getting the help they need now,” Farbman says.
It was in 1672 that Sir Thomas Willis, considered to be the founder of clinical neuroscience, first described restless legs syndrome. But it wasn’t until 1945 that researcher Karl-Axel Ekborn provided a comprehensive report on what he called an “overlooked disease.” Subsequent studies in the 1980s, 1995 and 2003 updated the diagnostic criteria.
About 80 percent of people with restless legs syndrome also experience a condition known as periodic movement of sleep — involuntary leg twitching or jerking movements during sleep that typically occur every 15 to 40 seconds. Although many people with restless legs syndrome also develop periodic movement of sleep, including Hartman, most people who have the sleeping twitching and jerking disorder do not suffer with restless legs syndrome.
Researchers say restless legs syndrome may affect as much as 5 percent of the American population. The cause of the disorder remains unknown, although Farbman says it tends to run in families. Hartman says both her grandmother and father have had less severe cases of restless legs syndrome.
Studies have indicated that low levels of iron in the brain are related to the disorder, as is a dysfunction in the brain’s basal ganglia circuits that use the neurotransmitter dopamine, a compound needed to produce smooth muscle activity and movement. Men and women with Parkinson’s disease, another disorder of the basal ganglia’s dopamine pathways, frequently have restless legs syndrome as well.
Farbman says there is no evidence that people with restless legs syndrome are at higher risk of developing Parkinson’s disease. He notes that early research showing a link between the syndrome and a higher tendency toward cardiovascular disease and hypertension needs further study.
Although there is no specific test for the conditiion, Farbman says symptoms are used to confirm the diagnosis. If a patient complains about the symptoms associated with the disease occuring far more at night, along with an irresistable urge to move the legs and/or arms, it is highly likely that the individual has the syndrome — particularly if the patient says symptoms are relieved by movement.
Clinicians use several medications to relieve symptoms, including drugs that act on the neurotransmitter dopamine as well as sedatives to help with sleep, and narcotics for pain.
After about six years of seeing movement specialist Farbman — she’s grateful that he took her symptoms seriously — Hartman says he found a drug, Neupro, that positively acts on her neurotransmitter dopamine by delivering medication 24 hours a day through a patch. It’s likely, Farbman says, that she will have to take the drug for the rest of her life.
Nothing else ever worked as well.
“It’s just wonderful,” she says. “I feel like I have a whole new life now.”
Paul Harasim is a health reporter at the Las Vegas Review-Journal. Contact him firstname.lastname@example.org.