Sleep specialist Dr. Richard Bogan offers insight on Restless Leg Syndrome and what people with this condition can do to achieve better rest.
Restless leg syndrome is a condition in which people experience an irresistible urge to move their legs, often accompanied by sensations like tingling, burning, or jitteriness. It isn’t as widely talked about as other conditions like insomnia, but it’s estimated that one-tenth of the U.S. population experiences it to some degree.
Because it seems to increase in the evening hours and when resting or lying down, it can dramatically affect sleep for those who have it. And when sleep is impaired, everything from cognition and memory to energy and weight can suffer.
To increase awareness and understanding of restless leg syndrome, we turned to Dr. Richard K. Bogan, MD, FCCP. Dr. Bogan is an associate clinical professor at the University of South Carolina School of Medicine as well as the co-founder and Chief Medical Officer of SleepMed Inc., the largest sleep diagnostic company in the United States.
Dr. Bogan is board certified in sleep medicine, pulmonary medicine, and internal medicine. He serves on the National Sleep Foundation’s board of directors, has published numerous articles on sleep medicine, and also runs SleepMed’s flagship sleep center.
Read on to learn more about RLS and how those with it can work toward better rest.
Rosie: Can you describe what Restless Leg Syndrome is and who it affects?
Dr. Bogan: Restless leg syndrome is characterized by the urge to move, oftentimes associated with what we call paresthesia (or funny feelings) typically in the legs, but it can affect other parts of the body. And oftentimes it’s associated with a kind of vague pain that’s very difficult to describe, called dysesthesia. It’s biggest complaint is the effect on the quality of sleep, which can have a significant impact on individuals.
It’s actually fairly prevalent — about 10% of the population has some symptoms of restless leg syndrome. It’s more common in women than in men and it tends to be more severe in middle age, but children can be affected as well. The good news is that oftentimes it can be intermittent and not too severe, but in the US, we think close to 3% of the population has moderate to severe restless leg syndrome that really needs to be addressed.
RLS has five specific characteristics to it: the urge to move, typically worse in the evening hours, it comes on with rest, and if the individual moves around, they get at least temporary improvement, but it comes back when they stop. The fifth requirement for a diagnosis is that it’s not obviously caused by something else.
There are a lot of reasons for individuals to have leg discomfort or pain, whether it be a charlie horse, cramps, arthritis, injury, varicose veins, or poor circulation — but if those are not obviously causing the problem then it’s most likely Restless Leg Syndrome.
Rosie: What are some of the common causes and risk factors of RLS?
Dr. Bogan: In terms of what actually causes it, we still don’t know for sure but we have a lot of clues as to what’s going on. The way I like to think about and they way I explain it to my patients is that when you are preparing for sleep and you actually sleep, the brain is inhibiting motor activity and it’s relaxing the muscles.
When we are asleep our muscles our relaxed, we have low oxygen consumption, and the brain is turning things off. With Restless Leg Syndrome, it appears that there is some problem with doing this in the motor control centers in the brain and neurotransmitters.
We tend to break restless leg syndrome into primary and secondary. Many of the individuals we see have primary restless leg syndrome and over half have a familial or hereditary component. It appears that there is some genetic abnormality in the muscle relaxation process. The other half are spontaneous and they tend to come on in the middle years.
Many individuals that have a family history of it can tell you that they remember back when they were growing up they had some problem with their legs like growing pains, and many of the young children tend to have some Attention Deficit Disorder or Hyperactivity disorder and some sleep disturbance. They can remember that they had problems, but by the time they get to middle age the symptoms gradually get worse.
It’s really not anything that they do per say, though certainly iron is very important. We make sure that everyone with Restless Leg Syndrome has their iron stores checked and make sure they are good because iron is very important for the brain to help with this muscle relaxation process.
There is also secondary restless leg syndrome. We can see that 25% of women during pregnancy develop it, it can be associated with iron deficiency, and it also tends to occur in individuals with chronic renal failure who are in dialysis.
In secondary restless leg syndrome, something goes wrong with the signaling. For example, there may be nerve damage in the lower extremities from diabetic neuropathy, anemia or iron deficiency, or sometimes there’s a B-complex vitamin deficiency.
If people with restless leg syndrome have high caffeine intake or have sleep deprivation and fatigue, it can make it worse. Even injury, if your sprain your ankle or if you exercise too hard and your muscles are sore, seems to aggravate restless legs.
We also know that there are certain medications that will interfere with brain signaling or seem to have some effect on it, and some of those are common over-the-counter medications like antihistamines (Benadryl or diphenhydramine), commonly prescribed medicines used for dizziness or nausea and other categories of drugs we call neuroleptics. Some of the folks may also have insomnia and actually feel depressed, then get put on an antidepressant and actually get worse, at least from the restless legs perspective.
Rosie: It may surprise many people to know that RLS is considered a sleep disorder. In what ways does RLS affect sleep quality for those who have it?
Dr. Bogan: The symptoms typically come on in the evenings, when individuals are trying to rest and the brain is trying to relax the muscles. And it’s worse right when individuals are trying to lie down and go to sleep. Oftentimes they’ll have some localized pain, discomfort, or “funny feelings” that delay sleep onset.
Interestingly, the majority of individuals with restless leg syndrome also have periodic leg movements during the night. That sometimes will fragment sleep as it causes tiny awakenings or more prominent awakenings. When the individuals wake up, they have trouble going back to sleep because their legs are restless; a lot of times, they have to get up and walk around.
So, it delays sleep onset, causes multiple awakenings, decreases total sleep time, and it even affects the quality of sleep. Sleep occurs in different stages and patterns, and that distribution is disrupted. The individuals end up having non-restorative sleep, so the majority of patients with Restless Leg Syndrome complain about their sleep — they have trouble getting to sleep or nonrestorative sleep and that affects them the next day.
If you don’t get enough sleep you can have fatigue and executive cognitive changes — you can’t think and remember or focus and concentrate. Everyone responds differently but poor sleep affects your next day function considerably.
Rosie: Many people may not be aware of RLS and the National Sleep Foundation estimates that many cases are also misdiagnosed as insomnia. What are a few of the signs that people should be aware of, and what distinguishes RLS from other sleep problems?
Dr. Bogan: The most common problem with Restless Leg Syndrome is difficulty getting to sleep, so it sounds like insomnia, where in fact what’s happening is the restless legs are causing problems with getting to sleep.
Most of the patients actually present not to the doctor with “I have Restless Leg Syndrome”, but most of them present “I can’t sleep,” or “I’m having trouble with my sleep.” If someone comes into you and says, “Doc, I can’t get to sleep,” then you have to ask the critical questions. “Do your legs bother you?” is kind of a way to introduce it, then if they say yes you go to the four critical questions:
- Do you have this urge to move?
- Is it worse in the evening?
- Does it come on with rest?
- Do you get at least temporary improvement with movement?
The other tip off is when they wake up in the night (typically in the first third), they can’t get back to sleep because their legs are bothering them. Sometimes we ask about these periodic leg movements in the night. Their bed partner might say they’re riding a bicycle all night and their legs are moving, so that’s another tip-off.
Rosie: How is RLS managed or treated?
Dr. Bogan: There are behavioral treatments and there are medications available.
For the behavioral treatments, we know that moderate exercise and resistance training seems to help symptoms. The individuals can also give sort of surrogate signals to the legs that seem to produce some relief, which basically means massage, cold compresses or soaking in the tub.
We tell patients to protect their sleep, have good sleep hygiene and don’t be exhausted because that seems to bother it. We tell them to avoid caffeine.
Of course, we want to make sure their iron levels are okay, because some of the individuals can get improvement when we push their iron levels up to normal or to a high-normal range as well. There are some prescription medications available; they fall into two classes (dopamine agonists or alpha-2 delta ligands) and they seem to appear to help the brain relax the muscles and help with the sensation of the urge to move. There are some FDA-approved medications which healthcare providers utilize as well.
Rosie: What behaviors and habits can people with RLS integrate into their routines for better nights?
Dr. Bogan: We call it “sleep hygiene”, and the point of it is that the human brain likes stability — it wants to be awake at a certain time and it wants to sleep at a certain time. Some of that is personal routine and preference, but I tell patients you want to be comfortable and cool – the comfort of the environment is the most important thing – and the next is light.
When the campfires burned out, we used to go to sleep and replicating that is not a bad idea. Engaging in a lot of activity and stimulus right before bedtime, which many of us do, is not conducive to good sleep. We have too much light and a lot of electronics late at night right now, and a wind-down period with blue-white light is not good.
Winding down without that light is better, a lamp with a shade on it is not too bad. I like to tell people to stay out of the bed with a lamp for at least thirty minutes to an hour of winding down, and then when the brain gets sleepy, go to bed. If we can practice these habits of generally winding down without a lot of light late at night, that helps the brain start relaxing and get to sleep.
People with restless leg syndrome are kind of special because when they rest and are relatively inactive, sometimes that will bring out the restless leg symptoms. That’s where you might use massage, warm soaks in a tub, or even cool compresses. The patients sort of figure out what helps.
Looking at the medications, staying healthy, staying well-nourished, moderate exercise, all of those things help, as well as the lifestyle changes in terms of avoiding caffeine after 6 PM.
Rosie: What do you think everyone should know about RLS?
Dr. Bogan: RLS is very real. It’s a disorder that exists; the science identifies that this particular syndrome has features that greatly impact sleep.
Any time a patient has problems with non-restorative sleep or difficulty getting to sleep and it’s affecting their next day function, then they need to talk with a healthcare practitioner. Being aware that restless leg syndrome is a feature, and knowing of the cognitive aspect is important: If my legs are bothering me, I need to ask about restless leg syndrome; I need to make sure that my iron level is okay and I need to look my medicines that I’m taking to see what’s happening.
It’s not an uncommon disorder; a lot of people are affected by it and don’t know it. These maneuvers and these activities, if you can identify them, can greatly improve the quality of life in these individuals. We all want to be smarter and feel better and have more energy, so identifying this can make a huge impact in terms of quality of life.
Rosie: When should someone who suspects a condition like RLS or insomnia see a sleep professional?
Dr. Bogan: If your legs are bothering you or you can’t sleep, talk to your primary care physician. If it’s really bad and affecting function, even if it’s secondary or associated with stress or something like that, talk to your doc about it.
At any one time, 30% of us is having some trouble with our sleep, either getting to sleep or staying asleep. Insomnia is fairly common; 10% of the population have primary insomnia — they have trouble getting to sleep and it’s just hard to turn the brain off. And, sometimes it’s not insomnia but restless leg syndrome.
If someone is having chronic problems (we think of chronic as being 3 months) and it’s beginning to interfere with quality of life, then certainly they should see their healthcare practitioner because there are behavioral and medication treatments, lifestyle changes, and other things we can do to improve the quality of life in those individuals.
Many primary care physicians are knowledgeable about restless leg syndrome and can treat it; you don’t necessarily have to go to a sleep specialist or have a sleep study done. But, in some people, it’s so severe that it’s all day long, so that kind of individual may need to go see a specialist who has treated severe refractory cases for further assessment.
To learn more about Dr. Bogan’s work and SleepMed, visit their website for information on sleep disorders and treatments as well as their current research and publications. SleepMed has a network of physicians and sleep labs throughout the country, making it a great resource for identifying local physicians with expertise in sleep medicine.
For more on RLS, Dr. Bogan also recommends visiting the National Sleep Foundation or the Restless Leg Syndrome Foundation website for information on the condition, research and current trials being done.
If you feel you may have RLS, we recommend talking to your doctor about possible treatments. On top of talking with a trusted medical professional, we also suggest upgrading your bedding and bed set with the best mattress for your needs to facilitate more restful sleep and cease disturbances that can be caused by this disorder.
If you have RLS, what helps you relax and get to sleep? How does it affect your day-to-day routines?
This article is for informational purposes and should not replace advice from your doctor or other medical professional.