The faces of R.L.S. (Photos: Chris Machian, Jessica McGowan, Kevin Moloney, Janie Osborne, Ben Sklar and Allison V. Smith for The New York Times)When I first heard the term “restless leg syndrome” years ago, I thought it was a joke. It’s not an uncommon reaction. Over at the Freakonomics blog, Stephen J. Dubner saw a commercial about the disorder and thought it was a “Saturday Night Live” spoof.
But the people who have the problem aren’t laughing. Restless leg syndrome is a neurological disorder characterized by unpleasant sensations in the legs — often described by people as burning or creeping or like insects crawling inside the legs. The condition, which appears to have a genetic basis, creates an uncontrollable urge to move around. The biggest problem with the condition is that lying down and trying to relax makes it worse.
The National Institute of Neurological Disorders and Stroke estimates that restless leg syndrome, or R.L.S., affects as many as 12 million Americans. But the number is a source of debate. Some doctors believe the condition is often misdiagnosed as nervousness or insomnia or under-diagnosed, because sufferers don’t seek medical attention.
However, two Dartmouth Medical School researchers have questioned whether “disease mongering” by drug companies has led to an increase in R.L.S. diagnoses. They acknowledge that symptoms can be severe enough to be disabling, but wonder if ad campaigns for drugs to treat the condition have convinced otherwise healthy people that they are sick.
People with restless leg syndrome have grown accustomed to skepticism about their condition. In the latest Patient Voices series, my colleague Karen Barrow speaks with seven people affected by R.L.S., including a husband who copes with his wife’s disorder, a R.L.S. sufferer training for a marathon, an 18-year-old who has had the problem since childhood and a doctor who became an R.L.S. patient. Click on Patient Voices to listen to their stories and view photos and excerpts.
Healthy living doesn't happen at the doctor's office. The road to better health is paved with the small decisions we make every day. It's about the choices we make when we buy groceries, drive our cars and hang out with our kids. Join columnist Tara Parker-Pope as she sifts through medical research and expert opinions for practical advice to help readers take control of their health and live well every day. You can reach Ms. Parker-Pope at 
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Part of the difficulties patients with such maladies face are outright hostility from the medical community and the denial of any medical benefits or disability due to the doubters.
Walk a mile in my shoes…
— Richard PosnerI have restless leg and there’s no doubt - just ask my husband who is kept up by my kicking if i don’t take my potassium.
Speaking of, I do not want to take manufactured drugs - so I did research and found that if I take 550mg to 1100mg of Potassium Gluconate a day, I don’t have any problems with it at night. I still sometimes get the jumpy legs on long car rides, but otherwise, I’ve no issues!
— melissaa better name for the disorder may help to calm the giggles it provokes…but as it stands (ha) now it sounds like “twitchy eye syndrome” or “everything looks delicious disorder”…
— TomMy mother (60) had restless leg syndrome. We used to have to stop the car so she could get out and move and arrange for flights with deliberately paced layovers so she could walk. Then there were urinary infections which she’d never had in her life and the doctor sort of blew off. Then she was having a hard time lifting her leg and kept being sent to physical therapists for about a year. Finally after no improvement (and very restricted diets to try and control the RLS) she saw a neurologist who instantly identified that there was something wrong with her upper back from the way she walked.
They found a huge tumor compressing her spinal cord. Removal of it not only alleviated the problems she was having walking and standing immediately, but it also eliminated the infections AND the RLS, two symptoms that we had never even considered related. It turned out that the RLS was likely an early symptom of that tumor pressing on her spinal cord.
We try to share this information with other RLS sufferers we meet, since the whole ordeal taught us how a nerve being pinched, squeezed, or compressed can affect you in ways you would never have considered — and becuase it took a LONG time for any doctor to finally identify the need for an MRI of her upper back which discovered the tumor. I’m sure most RLS cases aren’t caused by this, but if we’d know of the possibility we would have known to ask for an MRI a lot sooner.
— TalyssaI have two friends who were both diagnosed with Restless Leg Syndrome (they do not know each other and are not connected in any way that I am aware of) and both were healed of the Syndrome through regular acupuncture over the course of a year or two. For anyone who is suffering and who wishes for respite, try acupuncture and chinese medicine - it works!
— AnnaI didn’t hear any voices in this post.
— ReasonI incur RLS interrmittently. Ive noticed that when i do get it, it is usually after I have laid down to sleep at night for a few minutes and feel like I can’t sleep. Then I begin to get urges to move my leg usually in the upper ankle in the calf. Wiggling my foot or leg seems to calm it momentarily. Its not painful at all, just an urge like my calf in the ankle refuses to go into rest mode. I am dominately right handed/footed. I’m also a lifelong under the table leg mover. I am also a ‘night owl’. Taking a small dose (250mg) of Tylenol or Ibuprofen seems to help (again the urge is not painful at all) -Paul
— Paul Jaeger - Studio City Ca.I have suffered for years with RLS to the point where air travel and even going to the movies became difficult. And my RLS was also affecting my husband’s sleep. I recently began taking 565mg of Hawthorn Berries twice a day, and am now able to sit through a two-hour movie and ride in the car for hours. It’s worth a try and doesn’t have the litany of side affects that the RLS drugs have.
— Paula WheelerRestless leg syndrome is also a symptom of iron deficiency anemia - a not uncommon problem (the deficiency) in various populations.
— kenThe other term is “spilkes”.
— NurseTerryhttp://www.caringisnotenough.net
I had pregnancy related RLS. I later learned that it is a not uncommon side effect of pregnancy. It was awful, I wouldn’t wish it on my worst enemy. It was worse than the morning sickness, the stretch marks, the bloating, and even non-medicated labor. I think what people don’t understand is that, for me at least, the restless legs aren’t the problem. It is the severe sleep deprivation that occurs when you are unable to lay still enough to fall asleep.
— JenniferI had horribly insomnia for years and never knew it was Restless Leg until I did a sleep clinic expecting to find Apnea. Just knowing that I was getting sleep, and not just awake the whole time, helped stop the cycle of keeping myself up with worry.
Also, I prefer “Jimmy Legs”
— DaveI also used to laugh when I heard about this…many years ago. It does sound like a joke, that is, if you don’t get it.
Then I too couldn’t stop this terrible urge to move my legs, not pain…just this interminable “sensation” that wouldn’t go away.
After suffering with this for about a decade, I finally had it diagnosed and am successfully taking mirapex (also used for Parkinson’s) to treat it. Recently, I found out that my brother has this, my father too, and also his sister, my aunt. I’m even told that a few of my distant cousins (on my father’s side) suffer from this as well.
It is definitely genetic, at least in part, and is most definitely real. I hope no one else who finds themselves laughing about this ever has to deal with the sleepless nights and difficult days I have had to endure with this terrible condition. The medication helps…but it’s still there.
— DBSI has RLS but only when I was pregnant.
I tried increasing my iron, but it never seemed to help.
After I gave birth both times, it completely went away.
— jenniferMy father has had RLS forever, and now I have developed it over the last ten years or so. My case is not so bad, yet, but it’s very annoying. There are times when it drives me crazy. I find that lying on my back makes it worse, and lying on my side is better. But if my case gets to be as bad as my father’s, all bets are off. His legs jump around like you wouldn’t believe, and he always talks of how difficlt the problem is for him. Oh well…
— BklynGirlBoth of my parents had RLS and I have it intermitttently. When my mother became elderly, she was unable to sleep and was never rested. She died before an effective remedy could be found. I have found a homeopathic remedy called “Restful Legs” by Hylands that calms my legs in minutes and allows me to sleep. I wish she could have tried it.
— MarionThis may be a clue. Before I had ever heard of RLS, I frequently experienced this problem, but only during business visits to the US. I live in the UK, and have never had the problem before, or since returning. I have not idea if there is any connection, but it first occurred in California. I also spend time in Ohio, and did not have the problem there.
— John HayfordI am very into healthy food, so doubt there was any deficiencies, unless the necessary minerals etc. are missing from the food in California.
I have never seen any references to this problem in Europe, so maybe it’s regional.
I have had RLS for years. When I announced at a family dinner party that I had the condition, two of my three sisters broke out in hysterical laughter, one giggling and asking me if I diagnosed the RLS before or after seeing the commercials…..nothing like support! It makes sleeping terribly difficult and contributed to terribly damaging nighttime eating. I also, related or not, was awakening during the night with a jolt, biting my tongue….okay, I am strange! But now I take a very small dose of mirapex and only ocassionally have RLS symptoms that typically do not keep keep me awake. And no more tongue biting. I am lucky.
— Joan JohnsonWhy don’t people try to walk around more!!!!!! It’s not normal to sit as much as we do in our culture and maybe we need to listen to our bodies more — like they’re saying — MOVE AROUND! I’ve had these symptoms before and for many people it’s likely just antsiness from an insufficiently active lifestyle.
Our ancestors didn’t have movies and transatlantic flights.
— BBRLS runs in my family. My mother has the worst case I have ever seen. She has tried many many different treatments, and traveled around the country trying to find a solution. She finally got it under control when her Dr. suggested that she try taking a Tylenol with her Mirapex at night. She passed the info on to me and it worked!
— KathyThe disorder gets its name from its most common and primary symptom (restless legs), but is by no means limited to the legs.
I realize now that I have had RLS for most of my life. It was diagnosed a few years ago and since then, symptoms, while still starting at the feet and ankles, have begun to creep upward, affecting the legs, lower, middle and upper back, arms and neck. (yes, I flop around like a fish out of water.) It is truly torturouos to live with.
My mom’s doctor thinks that several heart episodes that she has had over the years (nobody could figure out what was happening at the time) were actually RLS episodes.
I too went for a sleep study, suspecting apnea and that is how my RLS was finally diagnosed. I wouldn’t wish it on my worst enemy, but I am not above wishing it on people who assume that it is not real because it is not happening to them.
I wonder how many people have been driven to suicide by it with or without knowing that they had it.
I remember being a teenager and going to sleepovers and the other girls teasing me about my ‘wiggly feet’. I’ve had it all my life it seems, but generally I cope with it pretty well.
It’s a small thing - but wearing socks seems to help, and getting regular exercise.
Jennifer is correct in her post - it is not the feet moving itself that is so bothersome, it is the loss of sleep or very poor quality of sleep that you get - some days you wake up and your legs ache as if you ran a marathon and you are exhausted even though you have been in bed for 8 hours. (And yes - pregnacy can bring on RLS for women who have never experienced it before.)
— Shannon R.I would suggest trying magnesium. Often a deficiency will cause this problem as well as heart problems. Its worth checking out. Certainly the first step is to see if there are any vitamin deficiencies and try to get to the cause, not a drug to stop the sypmtoms
— jfI have suffered with, what I consider, mild RLS for years. The only real problem it has caused me is interfering with my sleep. I have been an avid rocker (as in rocking in a rocking chair) all my life and on those nights when I’m kept awake, I go into my dark family room, climb into my rocker recliner, and rock myself to sleep. I usually wake up in an hour or so and go back to bed where I fall right back to sleep.
— DanMy RLS was horrific for years. When I dropped Prozac and avoided all anti-depressants, it became noticeably better. Now I experience RLS at about 20% the intensity as while on those meds. I too find RLS to be much worse while laying on my back. And there appears to be a noticeable positive correlation between sinus and inner ear congestion and RLS intensity and frequency. There is a nearly 100% effective cure but that benign medication remains illegal. Too bad.
Oregon Guy
— Carl AxelsenAnti-depressant medications increase RLS symptoms. It feels like you need to continuously stretch your joints. I get it in my legs, and a wierd “bubbling” sensation in my wrists where I have to keep moving and stretching my wrists. It feels like little pockets of air bubbles going through the wrists.
— Michael C