It starts at night when I’m watching TV or right after I get in bed. This uncontrollable need to move my feet or my legs. It’s a kind of creepy, crawly sensation that’s really hard to describe, and I know there’s only one thing that will make it better — I have to get up. And that isn’t always want I want to do when it’s midnight. I just want to fall asleep, but falling asleep isn’t easy.
So I lie in bed and I shake my legs repeatedly, but that usually doesn’t work very well. If I stand up, it’s gone. If I read a book, even while sitting, it’s gone. My mind is actively engaged in something, forcing myself to be more awake, and that’s what seems to make a difference.
If this happens one night, then I’m even more tired the next night. And the more tired you are, the worse it is. So it can turn into a pretty vicious cycle, night after night, tossing and turning for hours.
What is this urge to move? As I found out about a decade ago, it’s a condition called restless legs syndrome, also known as RLS, and it’s classified as a movement disorder. About 10 percent of the population has it. Doctors aren’t sure exactly what causes restless legs syndrome, but they believe the pathways in the brain are somehow altered.
I spoke with Cindy Brown, MD, a pulmonary and critical care medicine doctor at UVA’s Sleep Disorders Center, to find out more about RLS and how it’s treated.
What is RLS? Overview and Symptoms
“Restless legs is a sensation in your legs that’s difficult to describe,” says Brown. “It’s usually not pain in the leg.” Brown describes my nighttime situation perfectly when she says:
“It comes over an individual during periods when they’re very quiet, usually at night when a person first gets into bed and they start to notice that their legs just don’t quite feel right. Some people describe it as ants in their veins. When they get up and move, it goes away. But when you get quiet again, it comes back.”
Usually, after patients fall asleep and stay sleep for several hours, the symptoms go away and don’t come back until the next evening, Brown says. More severe cases can occur in the early morning and other times of day, though.
According to Brown, certain medications (antidepressants, antipsychotics and anti-nausea drugs) can worsen RLS symptoms. Pregnancy also can make RLS worse (and up to 1/3 of pregnant women experience RLS).
Do You Need a Sleep Study?
Diagnosis can be based on symptoms. Often, though, Brown will do a sleep study to make sure patients don’t have other sleep problems. “If you’re sleep deprived and have poor sleep quality, those patients tend to have more symptoms with their restless legs.”
Periodic Limb Movements: Not RLS It’s important to note that kicking your legs at while you’re sleeping or during a sleep study doesn’t mean you have RLS. That’s called periodic limb movements.
Most people with RLS have periodic limb movements, but most people with periodic limb movements do not have RLS, Brown says. Periodic limb movements are very common, especially in older people. These movements are only important if they disturb a person’s sleep, Brown says.
Treatment depends on the severity of the symptoms and how much RLS disrupts a person’s life.
Treatment for Mild RLS Symptoms
Patients may find some relief with distractions like:
- Hot baths
Mild symptoms also can be treated with medication on an as-needed basis, says Brown.
Treatment for Daily RLS Symptoms
Patients who have symptoms every night usually need daily medications.
The first choice is a family of drugs called dopaminergic agents. Requip and Mirapex are the most common brand names. “They’re relatively recent and were originally marketed as Parkinson’s drugs,” Brown says. Now, they’re FDA-approved for RLS.
Why do these drugs work for RLS patients?
“The pathways in the brain that use dopamine are somehow altered in RLS patients,” says Brown. Dopamine helps regulate movement, among other things, and a shortage of dopamine seems to result in RLS. “The drugs help regulate that. They stimulate the dopamine pathway in the brain, and it suppresses the symptoms.”
Stronger Interventions for Restlessness
When dopamine agents don’t work, doctors will try other drugs like:
- Anti-seizure medications: These slow or block pain signals from nerves in the legs.
- Anti-pain medications: These are useful for patients with neuropathy, like diabetic patients, that contributes to restless legs.
- Narcotics: These don’t operate on dopamine receptors, but they usually cause the symptoms to go away.
In the most severe cases, methadone can be used, but that is a treatment of last resort, according to Brown.
Find Help for Your RLS Symptoms
Most RLS patients are treated successfully by their primary care doctors, says Brown. Only people with severe problems need to see a sleep specialist. Find a UVA primary care doctor.
“It’s a problem most people live with and it’s an intermittent annoyance in their lives, but it usually doesn’t cause any significant long-term problems,” Brown says.
But if whatever your primary care doctor is doing isn’t working, you should see a sleep specialist. “It should be a disease that it is something you live with that is a minor annoyance in your life. If you’re finding that it’s a severe problem, you should probably seek a specialty evaluation with a sleep center or a neurologist,” says Brown.