What 4 experts who treat people with restless legs syndrome want you to know about the common disorder

Up to 10% of Americans suffer from restless legs syndrome (RLS), a neurological disorder that causes uncomfortable sensations in the legs and an irresistible urge to move them. But despite how common the condition is, it’s often misdiagnosed — and misunderstood.

Sept. 23 is Restless Legs Syndrome Awareness Day, which is meant to raise public awareness and understanding of the condition. Doctors who treat RLS say this heightened awareness is desperately needed. “Many people are not aware of the disorder,” Jennifer Goldschmied, assistant professor of psychiatry at the Hospital of the University of Pennsylvania, tells Yahoo Life. “What I do often hear is people mistaking restless legs syndrome for nervous or habitual shaking of the leg.”

But restless legs syndrome is much more than that. Here’s what four experts who treat people with restless legs syndrome want you to know about the disorder.

Restless legs syndrome is a real condition

Doctors say they regularly need to educate people that restless legs syndrome is, in fact, a real thing. “I’ve heard people say that they thought restless legs syndrome was made up by pharmaceutical companies to sell more drugs,” Dr. Roneil Malkani, a sleep medicine physician at Northwestern Medicine, tells Yahoo Life. “That’s definitely not the case.”

Dr. W. Christopher Winter, a neurologist and sleep medicine physician with Charlottesville Neurology and Sleep Medicine and host of the Sleep Unplugged podcast, tells Yahoo Life that he also often has to correct misconceptions that restless legs syndrome is made up or that it’s “harmless.”

The perceived severity of the condition is also a sticking point. “When we call it ‘restless legs syndrome,’ it sounds like it isn’t that serious,” Malkani says. “But it actually is a serious thing. For some people, it can be so severe that they can’t sleep. That impacts their quality of life and their mood.” Because of this, Malkani says there’s a push in the medical community to call restless legs syndrome by its other name, Willis-Ekbom Disease.

Iron deficiency is a major cause

People with restless legs syndrome often have low levels of iron in their blood. As a result, they can end up getting better when they take iron supplements, Dr. Andrew R. Spector tells Yahoo Life. He is an associate professor of neurology and sleep medicine specialist at Duke University School of Medicine and author of the book Navigating Life with Restless Legs Syndrome. But even people whose blood iron levels fall within a normal range can sometimes benefit from iron supplements. “People think that because their blood iron levels are OK that their brain iron levels are OK,” Spector says. “But sometimes we still treat them with iron and they get better.”

Still, iron supplements and iron-rich foods won’t clear symptoms up for everyone. “There are limits to that treatment,” Spector says. “Some people require really high levels of iron and it’s hard to get there with diet or supplements alone. In those cases, we may do iron infusions.”

It can be triggered by certain medications

Certain medications can trigger or exacerbate restless legs syndrome, including antidepressants, thyroid medications, antipsychotics and pain medications, Winter says. Some of these interactions seem to revolve around the balance of dopamine in the body, Goldschmied says. “Dopamine dysfunction is one of the key mechanisms currently believed to underlie restless legs syndrome, although work in this area is still ongoing,” she says.

Antihistamines can also alter the balance of dopamine, she points out. If you rely on an antihistamine for allergy relief, Spector recommends choosing one that’s nonsedating. “It’s tougher when it comes to an antidepressant,” he says. “If you find your antidepressant to be very helpful and you don’t want to make a change, then don’t make a change — depression is a trickier condition to treat. But if your restless legs syndrome has been under control, you start on a new antidepressant and that triggers it, that may not be the best medication for you.”

Women are more likely to deal with restless legs syndrome than men

Research has found that women are more prone to developing restless legs syndrome than men. But the reason why is “largely unknown,” Winter says. There are some theories, though.

One theory is that the sex hormone estrogen influences the transmission of dopamine and glutamate (a neurotransmitter involved in brain function), sparking restless legs syndrome in some women. Blood loss from menstruation may also play a role, Spector says. “That can cause iron loss each month,” he says. “Even postmenopausal women may never have recovered from the years of menstruation.”

Restless legs syndrome is more common as people get older

Restless legs syndrome is more common in people 45 or older, with patients who are diagnosed before 45 considered to have an early-onset form of the condition. However, people can be diagnosed as early as childhood.

As for why restless legs syndrome is more common as people get older, Spector says it may be linked to other health conditions that people can develop as they age. “Restless legs syndrome is more common in people with neuropathy, spinal disease, kidney disease … you’re accumulating medical problems associated with restless legs syndrome as you age,” Spector says.

Weighted blankets may help — but they’re not a cure

Weighted blankets can help some people, “but it’s really anecdotal,” Spector says. Meaning, there isn’t research to support this right now. “But mechanical stimulation — tough massage and weighted blankets — helps disrupt the abnormal feeling in many patients,” Winter says. Spector adds: “Is it going to solve restless legs syndrome in all people? Not necessarily, but it’s a simple thing that people can try.”

Other options for treatment include avoiding caffeine, alcohol, tobacco and sugar after bedtime, Spector says. “Those are classic dietary triggers and, for some people, that’s enough,” he says.

If that doesn’t help, he recommends visiting a doctor. They’ll check your blood iron levels as well as levels of transferrin, a protein in the blood that carries iron throughout the body, Winter says. “If they’re low and it’s appropriate, consider an iron transfusion,” Winter says. Doctors may also recommend taking a medication like dopamine agonists or gabapentin/gabapentin-like drugs. “These are typically used first,” Winter says.

Ultimately, doctors stress that restless legs syndrome is real and that it’s important to seek help if you’re struggling with symptoms. “So many people have been suffering so long that they think they have to keep suffering forever,” Spector says. “That’s not true. We can often treat it and relieve all of their symptoms.”