For Walt Kowalski of Jackson, Mich., bedtime isn't the relaxing end to the day, but the beginning of another nerve-jangling night with restless legs syndrome.
Soon after lying down, unpleasant electricity-like sensations creep into Kowalski's legs. An urge to move grows and becomes irresistible. The feelings force him to kick, move, or get up and walk. The unpleasant symptoms return and often keep him walking in the night, robbing him of sleep.
Restless legs syndrome (RLS) is an often misunderstood neurological condition. Although it affects up to 10% of Americans, RLS has its skeptics. New research, though, is bringing new understanding and treatment to this sometimes debilitating disorder.
Restless Legs Syndrome: New Kid on the Block
Until recently, most people had never heard of RLS. Even most physicians were in the dark.
Many people learned about restless legs syndrome from watching TV advertisements for medicines that treat RLS. So, is restless legs syndrome just a "made-up" disease?
"Despite the trivial-sounding name, this is a very real disorder," says Mark Buchfuhrer, MD, a nationally known expert on restless legs syndrome, who has treated hundreds of people with the condition over the past 15 years.
RLS first appeared in the medical literature in 1945. Recent publicity has raised its profile, but "restless legs syndrome has been around for centuries,", says Georgianna Bell, executive director of the Restless Legs Syndrome Foundation (www.rls.org). Descriptions of the disorder date as far back as the late 1600s in writings by the physician Sir Thomas Willis.
While 8% to 10% of Americans have some symptoms of RLS, "about 3% of adults have restless legs syndrome that impacts their quality of life enough to seek treatment," says Bell.
Restless Legs Syndrome: Sometimes, Sneaky Symptoms
The symptoms of restless legs syndrome vary widely. Often, sufferers of RLS have difficulty describing their symptoms. Some phrases people use to explain the strange feelings in their legs are:
- Electrical shock
- Ants marching in my legs
- Soda water in the veins
One thing all people with restless legs syndrome share: a discomfort in the legs that begins at rest and gets better with movement. Physicians diagnose restless legs syndrome when the following symptoms are present:
- An urge to move the limbs (with or without "crawly"-type sensations)
- Worsening at rest
- Improvement with activity
- Worsening in the evening or night
These symptoms of restless legs syndrome can range from "barely noticeable to almost incapacitating," according to Buchfuhrer. Some people have minor symptoms and no sleep problems. The most severely affected suffer almost constant discomfort or pain for years, if untreated.
People with restless legs syndrome typically come to the doctor complaining of insomnia or fatigue. Often, "their sleep is quite disrupted," says Buchfuhrer. The chronic fatigue caused by restless legs syndrome can create other problems:
- Reduced concentration and memory
- Decreased motivation and drive
"People with moderate-to-severe restless legs syndrome can become totally disabled," says Buchfuhrer. In the most severe cases, he adds, "They can't sit down to work. They eat breakfast walking around the room." Many avoid movies, car trips, or plane rides, knowing their symptoms might make the activity intolerable.
Fortunately, restless legs syndrome does not lead to other neurological conditions, such as Parkinson's disease or neuropathy. However, "this is a progressive disorder that -- in most people -- gets worse over time," says Buchfuhrer.
Most people with restless legs syndrome also have periodic limb movement disorder. In this condition, involuntary twitching of the arms and legs disrupts sleep. Periodic limb movement disorder can contribute to the chronic fatigue of RLS.
Restless Legs Syndrome: What Causes It?
Experts aren't sure what causes restless legs syndrome. According to James Connor, PhD, distinguished professor and vice chairman in the Department of Neurosurgery at Penn State University, however, new research shows that iron plays a key role.
Magnetic resonance imaging (MRI) scans and brain tissue studies from deceased restless legs syndrome patients demonstrate reduced amounts of iron in their brains compared with non-RLS patients' brains. This occurs even when the level of iron in the blood is okay.
"Many people with restless legs syndrome are 'brain-iron-deficient,' even if their whole-body iron levels are normal," says Connor.
Researchers also know that dopamine is a key player in restless legs syndrome. Dopamine, a neurotransmitter, relays messages between nerve cells in the brain.
In those with RLS, "there appears to be compromised uptake of iron into the [nerve] cells in the brain that make dopamine," says Connor. This could lead to decreased function of these nerve cells, including the ability to make dopamine, he adds.
The disorder runs in families, with about half of restless legs syndrome sufferers having family members affected as well.
Most cases of restless legs syndrome are unexplained, or "idiopathic." Sometimes RLS is associated with other medical conditions:
- Iron deficiency
- Kidney disease requiring dialysis
- Parkinson's disease
Treating these conditions, if present, can improve restless legs syndrome symptoms.
Restless Legs Syndrome: New Treatments Bring Relief
In 2005, the FDA approved Requip (ropinirole) for the treatment of moderate-to-severe restless legs syndrome. Requip is the first FDA-approved medication for RLS. In 2006, Mirapex (pramipexole) was also approved. Neupro (rotigotine) was approved in 2012.
These drugs act like dopamine. They attach to nerves and change the way they "talk" to each other. In clinical trials, these medicines relieved symptoms of restless legs syndrome in about 75% of people. Both drugs also prevented relapses during long-term use.
Many other medicines have been shown to help people with restless legs syndrome. Physicians often use combinations of medicines to get RLS under control.
These medicines act like dopamine, similar to those mentioned above. Dopamine-like medicines in general work the best in reducing restless legs syndrome symptoms. They include:
Nausea is the most common side effect of dopamine-like medicines. Another potential problem: taken frequently, these drugs can actually worsen symptoms of restless legs syndrome. Called "augmentation," this problem is more common with levodopa than with newer medicines.
Other Medicines for Restless Legs Syndrome
Several other kinds of medicines have shown benefit for RLS. They act in different ways to "calm down" nerve activity:
- Anti-seizure medicines, such as gabapentin (Neurontin, Horizant)
- Opiate pain medicines, such as hydrocodone, propoxyphene, or tramadol
- "Sedative-hypnotics," such as clonazepam or zolpidem.
Restless legs syndrome often relapses, even after an effective treatment is started. "What's very interesting and strange about treating [RLS] is it's a constantly changing landscape," says Bell. "What works for you may not work for someone else, and what works for you now may not work for you a year from now."
Walt Kolakowski, 60, understands this well. Over 30 years, he tried multiple treatments for his restless legs syndrome. For Walt, dopamine-like medicines worked -- but caused too many side effects. He experienced the classic symptoms and progression of severe restless legs syndrome. Today, his symptoms are "somewhat controlled" with gabapentin and hydrocodone.
Fortunately, most people with restless legs syndrome do very well, says Buchfuhrer. For many, he says, the new dopamine-like drugs are "a godsend." In his experience, "95% of people can get free of restless legs symptoms 95% of the time" using some combination of treatments. Goodbye night walking, goodbye "creepy-crawlies." After finding a regimen that works, he adds, "they're the happiest patients -- it's my favorite disease to treat."