It’s not your imagination. Your tingling legs, numb legs or that creepy-crawly sensation in your limbs is real. You constantly need to move to get some relief. You may have restless legs syndrome, a neurological condition. In this exclusive Lifescript interview, a top RLS expert and researcher discusses restless legs and treatment for the syndrome...
If you’re one of about 10% of Americans struggling with restless legs syndrome, a neurological disorder, don’t despair.
Medications can help – and more may be on the horizon, says Roger Kurlan, M.D., director of the Movement Disorders Program, Atlantic Neuroscience Institute at Overlook Medical Center in Summit, N.J. He’s conducting one of several clinical trials for medications to combat the effects of RLS, also called periodic limb movement disorder. The two-plus-year double-blind study began at the University of Virginia and is about a year along.
“We have a lot of excellent treatments, and most people’s symptoms are well controlled,” he says. “We’re just trying to find medicines that are better than the ones that exist right now.”
In an exclusive Lifescript interview, Kurlan shares his thoughts and 30-plus years of experience on diagnosing RLS, its causes and treatments as well as details of his clinical study.
What causes restless legs syndrome?
It looks like abnormal signals in the brain are developing and causing the [tingling legs and urge to move the limbs].
There is some evidence that it leads to an abnormal balance of a [brain] chemical called dopamine. It may also relate to chemicals called opioids, which resemble opiate medications we take. There are natural opiates in the brain and they appear to be disordered.
For many cases, it’s hereditary, so people seem to inherit these chemical imbalances.
Does RLS affect a lot of people?
This appears to be very common. It’s been estimated that 10% of all people have restless legs syndrome.
Many people suffer from it without knowing it or what it is. They just think they’re restless sleepers or bad sleepers and don’t realize that it’s a recognized medical disorder. So, they miss out on effective treatments.
How tough is RLS to diagnose?
It’s very easy for physicians who are knowledgeable about the condition to diagnose. The main problem is that many primary care physicians who are initially approached about symptoms aren’t very informed about it.
Most specialists who deal with neurological movement disorders are fairly experienced in it, and once you hear the story, it’s a fairly straightforward diagnosis.
What are the stories or symptoms you hear?
The usual symptoms are that someone lies down to go to sleep at night and then usually 20 or 30 minutes later, they develop an uncomfortable feeling in their legs, which forces them to move their legs around. It’s usually described as a restless feeling.
How disturbing are the symptoms of restless legs syndrome?
It becomes so uncomfortable that people have to get up and walk around. Many people find if they take a hot bath or shower or if they walk on cold floors, they get a little relief.
The symptoms can persist for a long time and interfere with sleep.
Is it painful?
It’s usually not described as painful, but there is discomfort.
It’s often hard for people to put the right words to [the feelings]. They come up with a variety of descriptions, like “jumpy legs” or “my legs are drying” and “I just can’t get them comfortable.”
Straight pain would be pretty atypical.
Does a cool floor ease the uncomfortable feelings?
It seems to. We don’t really know what the feedback to the brain is with coldness, though it seems to have a positive effect.
What problems can current medications cause?
One of the biggest problems that occur with the medicines most commonly prescribed for restless legs syndrome is that they often cause “tolerance.”
You get a good response at first, but over months or years, you need increasing doses of the medicine. You get a [decreasing] response.
They also cause augmentation, meaning that if you stay on the medicine, the symptoms get worse and worse. The solution is you have to get them off the medication.
Unfortunately, those are problems that many doctors aren’t aware of, so they just keep raising the dose, which is the wrong thing to do.
How can a doctor avoid a tolerance problem?
It’s a matter of monitoring and adjusting things over time. You can’t just write a prescription for RLS and leave someone on the medicine for the rest of their life.
Are there effective alternative therapies or diet, such as vitamins, veggies, etc.?
Not that we know of. But a variety of medicines are effective. They just have to be used properly.
Probably the best advice is for patients to see someone who is experienced and specializes in this problem. Generally, it would be a movement disorders neurologist.
Can other medications relieve symptoms?
Other medications can be helpful, for example neurontin and clonazepam.
Pain medications, analgesic medications, mild narcotic analgesic medications can relieve the symptoms of RLS.
Can an iron deficiency or other medical condition can cause RLS?
Some secondary causes [such as an iron deficiency] can produce the same symptoms as restless leg syndrome. Many times, people have underlying restless legs syndrome, but then develop other medical issues, which makes their symptoms worse.
Spinal stenosis is another condition that often brings out such symptoms. Then the treatment would be correcting the underlying problem rather than giving medicines for restless legs syndrome.
If it’s brought on by iron deficiency, you want to just correct the iron deficiency. But most patients don’t have a specific underlying cause like that.
How do people get involved with a clinical trial if they’re suffering from restless legs syndrome? See a neurologist who specializes in movement disorders. Most of them are aware of these trials. They can also just use the Internet to search for clinical trials.
If they’d like to join your study, what should RLS patients do?
Probably the best way to contact us is by calling my study coordinator, Sandy Wrigley, at (908) 598-7991. We would be able to give them information.
For more information, visit our Restless Legs 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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