15 Questions With an RLS Expert


"Once you start to accumulate sleep deprivation, it's possible that your RLS symptoms will act up."(CHARLENE GAMALDO)

Charlene Gamaldo, MD, is an assistant professor of neurology at Johns Hopkins Hospital in Baltimore and assistant director of the Johns Hopkins Sleep Disorders Center.

Q: I was diagnosed with restless legs syndrome two years ago. Now my teenage daughter says she thinks she has it too. Is she old enough to have it or is it just in her mind?

A: Restless legs syndrome (RLS) is known to run in families and there's something called early onset RLS, which is when the symptoms manifest before age 40. If you developed RLS early on, it's more likely to have a hereditary component. Even if you didn't develop RLS until later in life, it's still likely that your daughter could have it too. Unfortunately people who get RLS when they're young typically see it get worse as they age.

Q: I wake up sometimes with shooting pains in my calves and it hurts to move them. Could I have RLS?

A: There are four criteria used to determine if you have RLS: You must suffer from uncomfortable leg sensations associated with an overwhelming urge to move, they come on with rest, they are improved with movement, and they are worse at night. Based solely on that one criterion you described, it would be hard to say. RLS is a possibility but you could also suffer from nocturnal cramps and the only way to find out for sure is to probe deeper and answer those four questions.

Q: I've been taking dopamine agonists for my RLS for a few months now, but I'm starting to feel my symptoms coming back. Do I need to up my dosage?

A: You never want to up your medication without talking to your doctor first; treatment always needs to be individualized to fit the patient. When talking to your doctor, you'll find out if it's really your RLS acting up again or if you have developed something else on top of the RLS, like nocturnal cramps.

Some patients will experience something called augmentation after taking RLS drugs for a few months or years. Augmentation is when a certain medication type stops working and your symptoms may come back even worse than before. If this happens, your doctor may recommend you come off of that medication and try a different one.

[ pagebreak ] Q: After seeing a decent amount of success from my dopamine prescription, I stopped taking it every night and now only take it when I feel my symptoms coming on. Do I need to take it every night?

A: Absolutely not. Dopamine agonists don't have a protective value—they merely relieve the symptoms when you have them. Some data has actually shown that taking it more than necessary could cause you to develop a tolerance to the medicine.

Finding a medication schedule that works for you will require some trial and error. It takes approximately two hours from the time of administration for dopamine agonists to be fully effective, so waiting to take your pill right at the peak of your nighttime symptoms is often too late for it to start working. If you find that you have frequent episodes when you dont take your medication, try to anticipate the usual time that symptoms may begin in order to time administration of your medication optimally. Of course, these strategies are best discussed with your sleep care provider.

Q: My RLS is normally under control when I've had a fair amount of exercise or movement during the day, but worse on days when I move too much or too little. Is there anything I can do to curb the symptoms on more sedentary or very active days?

A: The onset of RLS symptoms has not been clinically linked to daytime activities—but some patients feel that exercise during the day or stretching before bed helps keep their symptoms under control. Other patients have actually reported that extreme exercise during the day seems to make their RLS worse at night. It may help to keep a log of your activities and symptoms, to see if any daytime habits seem to have a consistent effect on your legs. And, if you engage in a fair amount of exercise, you should talk to your doctor and try to set limits to avoid overexertion.

Q: I kick so much in my sleep that my husband refuses to sleep in the same bed as me. But I fall asleep right away, and never have problems while I'm awake. Is this RLS? Is there any way to stop it, for the sake of our marriage?

A: If you don't fill the four criteria, then you do not have RLS. Just kicking alone is not RLS. It's possible that you've developed something else like periodic limb movements, which is a normal phenomenon that occurs with age or as a side effect of certain medications or other medical conditions. If the kicking is really disrupting your husband, you should discuss it with your doctor.

Q: My legs seem more restless during the day than at night. Could my problem be something more serious than RLS?

A: If your symptoms are worse during the day than at night it does not fit the criteria for RLS. You and your doctor should consider other causes like neurological conditions, back conditions, and arthritis.

[ pagebreak ] Q: Since I became pregnant, I've developed this strange urge to get up and move around when I try to sleep. Could it be RLS? Will it go away?

A: It's very common for pregnant women to develop RLS and studies show it may be related to an iron deficiency that develops during pregnancy. You can talk to your doctor about taking iron supplements or B12 vitamins to curb your symptoms. In most cases, you can expect the RLS to disappear as you get closer to the time of delivery.

Q: I fit all four criteria for RLS but my symptoms only come out a few times a month. Could it be RLS, and should I take drugs for it?

A: It could certainly be RLS. There is no measure of frequency or intensity that qualifies RLS—all that matters is if you fit the four main criteria. If your symptoms are not affecting your ability to function during the day it's probably not worth getting on prescription medicine, and considering home treatment options instead. However, you can still discuss the pros and cons with your doctor.

Q: If I can help it, I'd rather take vitamins than prescription drugs to treat my RLS. Is this a feasible option? How long should it take for the vitamins to start working?

A: Of primary RLS patients, about 20% to 30% of them suffer because of an iron-related problem such as anemia. About 10% of those get relief simply by taking iron supplements. The amount of time it takes to see effects varies on an individual basis. For patients who don't respond fast enough, though, we can suggest as much as three doses of iron supplements a day as well as vitamin C pills, which will help with the iron absorption.

Q: I've been getting great results by taking Requip. Is this drug safe to take for the rest of my life?

A: Dopamine agonists have been on the market for about 15 years and were originally used as Parkinson's medication before they had FDA approval for RLS use. That said, it's been known to be safe for 15 years of consistent use and doctors see nothing that could contradict that.

[ pagebreak ] Q: I saw an ad on TV and diagnosed myself with RLS. I called my doctor, who took my word for it and phoned in a prescription. Shouldn't he have done some tests first or at least asked some questions?

A: It's usually not a good idea to diagnose a person over the phone, especially when it comes to RLS. It's such a clinical diagnosis; you'd want your doctor to know the nuances of your symptoms. A physical exam would also help him rule out other conditions such as neuropathy or spinal problems. I wouldn't recommend taking the meds until you've been examined in person.

Q: If I nap during the day to make up for lost sleep the night before, will I have even worse RLS symptoms that night in bed?

A: The circadian pattern of RLS has nothing to do to with the time you went to bed or when you got your hours of sleep. It is, however, dependent on total number of hours. Once you start to accumulate sleep deprivation, it's possible that your RLS symptoms will act up. So if you nap during the day, just be sure you'll be able to fall asleep that night. If not, those lost hours will effect you the next night.

Q: I get painful pins and needles in my legs a lot when I'm resting. Could I have RLS?

A: Maybe, but there could be other explanations, as well. Some people say their RLS is just a feeling of discomfort yet some say it's extremely painful. Painful or not, we get the gamut of descriptions. RLS is less about the type of pain you feel than it is about whether or not you fit all four criteria of the syndrome.

Q: I'm on Prozac for depression. Will that make my RLS worse?

A: Prozac is an SSRI antidepressant, which for unknown reasons are commonly associated with increased leg kicks at night as well as the four symptom criteria needed for an RLS diagnosis. The only antidepressant that is not known to have these side effects is Wellbutrin. Should you switch? That's up to you and your doctor to find the right antidepressant for you. The good news is that Prozac and dopamine agonist medications are fine to mix if you need to.