by Erica Heilman
Just as you are falling off to sleep, you feel a creepy-crawly sensation in your legs and a strong urge to relieve it by moving. You move and it's better and you're glad. There's just one problem. You're still awake.
Millions of Americans suffer from restless legs syndrome, a neurological disorder that causes strange sensations in the legs that are relieved temporarily with movement. The syndrome is actually a sleeping disorder, as it happens most often at night in bed, and can cause serious sleep deprivation.
Below, Dr. Elizabeth Bouldin, director of the Division of Sleep Medicine at Ochsner Clinic Foundation, introduces this strange phenomenon, and discusses treatment options for people who are in bad need of some good sleep.
What is restless legs syndrome?
The distinguishing characteristic of restless leg syndrome, or RLS, is an unpleasant feeling in the legs, which is relieved by movement. That's a very general definition.
What makes it a sleep disorder?
It can prevent people from getting to sleep or getting back to sleep if they wake up, and it tends to come on in the afternoon and evening, right when people are trying to go to sleep. It's also very commonly associated with something called periodic limb movement disorder, or movement of the legs during sleep, which can also cause "bad sleep" after the patient finally gets to sleep.
It's possible to have the limb movements for other reasons, but there's a pretty good association between people who have restless leg syndrome and periodic limb movement disorder.
How do people describe the feeling of RLS?
The description varies a lot. Some describe itching or crawling or pain. But I actually think that word "pain" is probably a default word for folks. When you ask, "What kind of pain?" they often start talking about other, more difficult-to-describe sensations.
Some are very graphic when they describe how it feels. They say, "It's like ants crawling along my bones," or "The nerves in my legs are exposed," or "I have water rushing inside my legs." It's tough to explain, and because it's difficult to put into words it doesn't get talked about much. If you say to the wrong person, "I feel like I have ants running along my bones," they'll think you're nuts.
Do we understand what causes RLS?
Not exactly. There is a genetically transmitted variant, so it can run in families. RLS can also be seen in people who have anemias of various kinds, B12 deficiency, iron deficiency, or thyroid disease. A lot of women find that it gets worse after they get pregnant.
It also probably increases with age. But that makes sense, because general medical disease, like anemias and thyroid disease, also increases with age.
Does any of this information offer clues about what may cause RLS?
RLS does not appear to involve the nerves in the legs. In other words, even though that's where you feel the symptoms, it doesn't look as if that's the source of the problem. It looks more like a brain-spinal cord issue, and for a lot of patients there is definitely a regular time of day when it strikes. It's very common to have onset just when people get ready to go to bed.
What sort of impact can this condition have on people's lives?
The same kind that anything that causes chronic sleep deprivation can, and chronic sleep deprivation in one family member can become a family-wide issue.
Exercise or moment relieves the symptoms, so one of the things that people with RLS tend to do is they'll get up and walk at night, or get on the treadmill, or just be up at all hours of the day and night, because as soon as they start moving, the symptoms go away. I had one 80-year-old lady who was out walking on the state highway at three in the morning. They finally decided that that was not safe, so they bought her a treadmill.
Does exercise generally make it better in the short term so that you can go to sleep?
The amount of time that people get relief with exercise varies a lot, but most of the time the answer is no.
Does RLS ever go away?
I have very rarely seen it "burn itself out". It is sometimes associated with other types of nerve disease, and in cases where the related condition improves, RLS will sometimes improve. For instance, I've seen a patients with RLS who have diabetes, and on those occasions when the nerve disease associated with the diabetes improves, RLS can get better.
How do you screen for RLS?
Descriptions of bad feelings in your legs in the afternoon or evening, which are relieved by movement, represent a fairly good indication of RLS. Other diseases of the nerves involving the legs usually do not improve, or are not relieved with movement.
I also ask patients, "Do your legs jerk automatically in the evening when you're lying down?" Repetitive jerking is another symptom. I ask them about family history. I ask them about times of day that they don't have the problem, which may indicate the cyclical aspect of RLS.
How is it treated?
Once it has been established that the RLS is not linked to some other medical problem that could be addressed, like thyroid disease or anemia, then we can treat the RLS directly. There are several different classes of medicines which may make it more manageable.
The two medicines that I use most often come from a class of medications that were initially indicated for Parkinson's disease. They are medications that mimic the action of dopamine and they seem to have some usefulness in this area. These medications are still not approved for this use but are used off-label. The studies are underway now to demonstrate what practitioners across the country already know, which is, these medicines are pretty good for restless leg.
Do these medications have side effects?
A lot of my patients do exceptionally well with very low doses, and that's exciting. You always want to give the least amount of medication that you can. So the side effects are usually quite minimal. Occasionally I see people who don't tolerate it because it doesn't agree with their system. But about 75% or 80% of the time, we do very well with low doses of those medications.
There are also sedating medications and pain relievers that can provide relief.
Are there substances that make RLS worse, that people should look out for?
Caffeine, nicotine, and alcohol seem to make it worse in many people, so cutting back or cutting out these substances may help. Some medications can make RLS worse too. Certain antidepressants, antipsychotics, even antihistamines can worsen RLS in some patients.
Do you have any advice for people who think they might have restless legs syndrome?
First I would say this is not a mental disorder, and it's not a moral failing, and it's extremely difficult to put in words what's wrong. If you're having unpleasant feelings in your legs which are interrupting your ability to go asleep or stay asleep, then you really should seek help.
And who should they seek the help from, particularly?
You can start with a general physician, and then go to a sleep specialist. The Web site of the American Academy of Sleep Medicine (http://www.aasmnet.org) lists board-certified sleep disorder specialists, so that you can find someone in your area.
Dr. Elizabeth Bouldin is the Director of the Division of Sleep Medicine at Ochsner Clinic Foundation.
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