If you’re part of the 10% of the population with restless legs syndrome, you’re probably used to snide reactions to your condition. You may also find yourself countering a host of misconceptions surrounding the neurological disorder. The Medical Detective checked in with experts who debunk the top myths associated with this debilitating condition. Read on…
Mention “restless legs syndrome” and giggles and guffaws often follow.
The disorder, characterized by painful, crawling sensations in one or both legs combined with an irresistible urge to move the limbs, is common – and widely misunderstood, doctors say.
“A significant portion of the public doesn’t consider restless legs syndrome a real medical condition,” says neurologist Daniel Picchietti, M.D., clinical associate professor at the University of Illinois School of Medicine and a sleep medicine specialist.
Moderate to severe restless legs syndrome (RLS) symptoms are present in about 3% of the adult population (5 million), and a milder form affects 5%, according to several studies.
Symptoms occur while sitting for long periods, and are felt more often during evening hours.
But we’re not talking mere daytime fidgeting, says Theodore Omachi, M.D., assistant professor of medicine at the University of California, San Francisco School of Medicine.
“Patients with RLS meet a distinct set of criteria,” he says. “Symptoms have to occur during evening hours too, and feel worse at that time to be considered RLS.”
Despite scientific evidence, misconceptions about RLS abound, including that it affects only adults and pregnant women.
Medical Detective consulted with experts to bust the 8 common myths about RLS and get a reality check about the disorder.
Restless legs syndrome myth #1: The condition was concocted by the pharmaceutical industry to sell drugs
Not so, experts say.
RLS was first described by an English physician in 1672, according to established research. It was later suggested to be a neurological disorder and dubbed “restless legs syndrome” by Swedish neurologist Karl Ekbom in 1945.
Ekbom also reported a familial tendency toward RLS, an association with pregnancy, a connection to iron deficiency and other factors, according to 100 Questions and Answers about Restless Legs Syndrome, by Sudhansu Chokroverty, M.D. (Jones & Bartlett Learning).
RLS was established as a neurological condition at a 2003 National Institutes of Health conference, says Suresh Kotagal, M.D., a professor in the department of neurology and a consultant in the division of sleep medicine at Mayo Clinic. A drug specifically to treat RLS emerged in 2005.
Progress is underway to create a laboratory test to confirm a patient’s diagnosis, according to experts.
“Drug-company advertising may have raised the awareness of RLS,” Picchietti says, “but it’s been well-established for a long time. Part of the problem is the syndrome’s silly-sounding name. There is a movement to give it a more appropriate one.”
In fact, the Restless Legs Syndrome Foundation is in the process of changing the name to Willis-Ekbom disease.
Restless legs syndrome myth #2: Symptoms are always mild
Contrary to popular opinion, restless legs syndrome symptoms are deeply unpleasant in some patients, according to a study by Richard P. Allen, Ph.D., founder of the John Hopkins Sleep Disorder Center and others published in the Archives of Internal Medicine in 2005.
A health survey of 15,000 RLS patients revealed that their quality of life was similar to that of patients with other chronic disorders, such as type 2 diabetes and clinical depression.
They often experience insomnia, fatigue, agitation and loss of energy.
Restless legs syndrome may not appear serious to others, but “it drives patients nuts,” Picchietti says. “They get despondent and depressed.”
Restless legs syndrome myth #3: It affects only pregnant women
Although there is a “huge connection” between pregnancy and RLS – pregnant women have about five times the risk of getting the disorder compared with the general population, according to Picchietti - the syndrome also affects men, children and women who aren’t pregnant.
About 20% of pregnant women get RLS. For most of them, the condition is transient and disappears post-pregnancy.
Picchietti cautions women not to confuse common muscle cramps during pregnancy with RLS.
“They're not the same thing,” he adds.
About half of all pregnant women get muscle spasms in their legs, according to the American Pregnancy Association. They may be caused by extra weight gain during pregnancy and changes in circulation.
A growing baby also may place pressure on the legs’ blood vessels, causing cramping.
Such cramps are characterized by painful, long-lasting contractions and a hardening of the muscle, according to the RLS Foundation.
RLS in pregnant women, however, is believed to be caused by a combination of low iron levels and hormonal changes, Omachi says.
RLS patients experience a creeping, pulling sensation anywhere from thighs to ankles, accompanied by a strong urge to move their legs.
Iron deficiency is strongly associated with RLS. Reduced iron in central brain neurons is believed to disrupt the brain’s dopamine system. Dopamine transmits brain messages and helps control body movements. It alters the central nervous system function.
“Some of [the onset of RLS] depends on the nutritional health of the mother,” Kotagal says.
Pregnant women with RLS should discuss symptoms with their doctors, experts say. Don't take iron supplements without consulting your doctor because too much iron can affect your and your baby's health.
Also tell your physician about other medications you’re taking. Some – such as antihistamines, anti-depressants and anti-nausea drugs – may aggravate RLS symptoms, according to the RLS Foundation.
Restless legs syndrome myth #4: RLS is an autoimmune disorder
RLS is not an autoimmune disease, but some autoimmune diseases are associated with it and may aggravate the condition, Picchietti says.
That's because many autoimmune disorders restrict iron absorption and use in the body, he says. So when iron levels dip, RLS sometimes rears its head.
“You have to have the [autoimmune] disease first,” Picchietti adds. “RLS doesn’t cause the other diseases.”
Autoimmune diseases commonly associated with RLS are Sjogren’s syndrome (a disorder in which a person’s white blood cells attack moisture-producing glands, resulting in dry eyes and dry mouth); celiac disease (a chronic disorder characterized by diarrhea and fatigue); and rheumatoid arthritis (an inflammatory disorder).
Restless legs syndrome myth #5: It runs in families
RLS is genetic in up to two-thirds of patients, meaning a parent, sibling, grandparent, aunt or uncle may have it too, according to a paper by Paul E. Cotter and Shaun T. O’Keefe, of the Department of Geriatric Medicine, Galway University Hospitals, Galway, Ireland, published in 2006 by Dovepress.
The “Family Study of Restless Legs Syndrome in Quebec, Canada,” published in Archives of Neurology in 2010, reported that 192 out of 249 RLS subjects interviewed as part of a 15-year RLS study had first-degree relatives with RLS.
The researchers also concluded that those who develop familial RLS did so at a much younger age (before 40) than those who had sporadic RLS. Patients with familial RLS also had the disease longer and experienced more severe symptoms.
A familial trait is one in which one or more cases show up among relatives. Researchers aren’t certain about how much of a familial trait is caused by genes.
And some researchers aren’t sure about the familial connection at all.
“Although some literature claims RLS is dominant in some families, not all studies have verified that,” Kotagal says.
Restless legs syndrome myth #6: The condition affects only adults
Although more common in adults, RLS affects about 2% of children 8-17 years old, according to a study published in the journal Pediatrics in 2007. Many experience moderate to severe symptoms.
“It’s more common than epilepsy and diabetes in children,” says Picchietti, lead investigator of the study. His team collected data from more than 10,000 families in the United States and the United Kingdom.
Attention-deficit hyperactivity disorder and depression are more common in children diagnosed with RLS, due to sleep deprivation caused by RLS.
About 75% of children with RLS had iron deficiency, Kotagal found in his current study characterizing the clinical features of childhood-onset RLS.
One possible connection is that milk, popularly consumed in childhood, has lactic acid, which interferes with iron absorption, Kotagal says.
Medications with alkaline, used to treat acid reflux, also interfere with iron absorption. Children being treated for that ailment may also be at risk.
Restless legs syndrome myth #7: All fibromyalgia patients get RLS
“Just because you have fibromyalgia doesn’t mean you’ll get RLS,” Kotagal says.
Still, 20%-40% of fibromyalgia patients do get it, according to fibromyalgia-symptoms.org, a nonprofit resource for women with fibromyalgia.
Pain, a key symptom of fibromyalgia, may aggravate RLS, Picchietti says, but that connection is uncertain.
On the flip side, most people with RLS do not have fibromyalgia, he says.
“It can be difficult to distinguish fibromyalgia symptoms from RLS symptoms,” Omachi says.
A careful medical history assessed by a physician can “help make the distinction,” he adds.
Restless legs syndrome myth #8: Athletes are more prone toward RLS
Not true, according to experts. Athletes may experience a muscle pull, sprain or tendonitis that hurts more in the evening hours, causing a jock to think the problem is RLS.
How to tell the difference?
“RLS symptoms are relieved by movement,” Kotagal says. “The opposite is true with other conditions. Musculoskeletal movement makes them worse.”
For more information about RLS, visit our Restless Legs Syndrome Health Center.
What’s Your Restless Legs Syndrome IQ?
Restless legs syndrome (RLS) might sound like a simple case of someone feeling on edge. After all, many people shake their legs when they’re antsy, bored or nervous. But there’s more to RLS than restless legs.
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