Friday, July 20, 2007
Is Restless Leg Syndrome Real?
Imagine being stung by 20 mosquitoes and having that burning need to scratch, but your hands are tied behind your back.

That's how some people describe the irresistible urge to move, or kick associated with restless leg syndrome, or RLS, a condition so odd that some within the medical community think the pharmaceutical industry made it up just to sell us drugs.

But for the estimated 20 million Americans suffering with it, compelling new research suggests it's not in your head, but rather in your genes.

Two studies published this week, one in the New England Journal of Medicine, identify specific genes responsible for RLS. And it may affect many more of us than we think: As many as 65 percent of adults carry the gene variation that can lead to symptoms, says Dr. David Rye, co-author of the NEJM study, and an Emory University neurologist who himself suffers from this "riot of the foot," as some of his patients describe it.

So who has this gene?

Study participants were monitored in their sleep; they wore ankle bracelets to record the number of kicks. Interestingly, those who kicked 21 or more times per hour were twice as likely to have the variant gene, Rye's research found. Those with two copies --- one inherited from each parent --- kicked most.

Another revelation: The link between RLS and iron. In fact pregnant women, whose iron levels can drop during pregnancy, are at greater risk of developing the disorder. The good news is, experts say that for women who develop RLS during pregnancy, it often disappears weeks after you give birth.

This research could signal hope for treatment for people living with this annoying, sometimes debilitating disorder. Not only does RLS often hit at night, preventing patients from sleeping. Researchers say it can also contribute to depression, and put sufferers at greater risk of high blood pressure.

The next step, using the gene knowledge to help diagnose and treat RLS.

Do you have RLS, or know somebody who does? Or remain unconvinced it's real?

By Amy Burkholder, CNN Medical Producer

I once had akisthesia in my legs for two months as a side effect of a medication I had been taking. I thought I was going to go insane. If that's what RLS feels like, then I feel extremely sorry for those that have it. I think it's real, of course! If it weren't real, those people wouldn't have manifested it in their sleep, right?

I am actually surprised, though, that it seems to be genetically based and not from eating, say, way too much pepperoni on that jumbo pizza. That is fortunate, though, because now they can work on how to fix it. Now if they can genetically find the gene that causes cravings for saturated fat...

It's great the scientific community was able to identify the cause, however restless leg syndrome can be easily taken care by taking iron and calcium pills. I know that worked for me. It will be interesting to see what else the scientific community comes up with that is as inexpensive as the current solution...
Oh, yes I know someone with RLS. I have been sleeping with this kicker for 24 years.

At first we thought it was related to his sleep apnea because of lack of oxygen or poor circulation; but after he received his CPAP machine,the kicking continued. I also notice when my husband is under alot of stress at work the RLS is even worse.

His RLS is really bizarre sometimes. It is like his legs are levitating and then he kicks. He also sleeps through all the kicking. Guess what? I don't. I have found bruises all over my legs where he has kicked me.

He has tried everything from medication to sleep studies. For myself, the next step is either purchasing a double-king sized bed or tying him down every night.

I have talked to my sister-in-laws about his brothers having similar problems with RLS. They each had a story about how their husbands ride a bike all night long in their sleep. He has five brothers. We don't know if one of his parents has the same problem.

It would be great if gene research could help this problem! But in the meantime, the spouses continue to be kicked at night or resort to moving to a different bed or the couch frequently.
My husband has this. It's hard for me to imagine what it feels like, but he just gets completely antsy and has to move his legs quickly to make the feeling go away. Needless to say it's especially difficult on long car rides, international flights or at the theater.
I can totally relate because I have had RLS for a long time and never knew what it was or what caused it. It sure keeps me awake at night and some nights I dread going to bed knowing what I will have to put up with until I finally fall asleep.
I definately have RLS I just never knew it had a name or what it was. Some nights I toss and turn for hours and cannot get to sleep. I can relate to anyone out there with RLS and feel sorry for them as I do myself some nights. I wish it would go away but apparently it has not yet and I've had it for a very long time.

Sincerely, a sleepless RLS patient
I have RLS. I find it funny that some people think it's not real. I thought it was so common it didn't even have a name.
I have been diagnosed with RLS. I have had this for years and years, and FINALLY someone diagnosed it. It was a dream come true for me. Finally I could lye down at night and not kick my husband all night long. Finally I could fall asleep and not be wakened by my jumping legs. If you have never had this, you have no idea how frustrating it can be. The only way I could make it stop was to get up and walk. No matter what time of the night it was, that was the only thing that would help.
I have a friend with RLS, and I can assure you it is a real medical condition. It tends to act up the most when she is trying to relax. I've seen it nearly throw her out of her chair. It makes it difficult for her to sit through a movie, and when she's trying to fall asleep it will startle her awake over, and over, and over again. It leaves her exhausted and frustrated. The condition has worsened as she's gotten older.

My friend is not prone to using drugs, but she has discovered the use of marijuana will settle the symptoms down enough that she can usually get to sleep.
I have suffered from RLS since before there was a well-known name for it. My Doctor seemed puzzled when I described it to him 20 years ago. I remember him asking me if my legs hurt. I responded, "No, not at all. I just have this intense need to move my legs for hours." My poor husband would often have to move to another bed in another room. Twenty years ago,my co-workers thought it was weird and even humorous when I would describe it. Now, about half of them have it themselves and are miserable.
I feel a bit better that it is a real malady....that it is NOT just in my head! Not much consolation for sure, but I feel a certain amount of validation that it is REAL.
I had this about 40 years ago and it drove me crazy. Then I read about adding more calcium to my diet to stop it. And, voila, it worked and I haven't had it since.
I have a severe case. My legs don't twitch at night 21 or more times per hour; it's more like about 2-3 per SECOND. It happens during the day, too... Always has done it, all my life. Some relief is so welcome when I get it, usually after complete exhaustion, but there has to be a non-allopathic solution out there as I don't respond well to chemicals of any nature. There is a possibility that the apraxia I had as a kid (side effect of spinal meningitis) screwed up the motor functions, as it did require speech therapy for stuttering, but otherwise I am perfectly normal in my body motions (I was even a 4-year letterman in baseball in HS). Believe it or not, music tends to rhythmicize it a little, and I don't know why...
I have rls and it is worse since knee replacment.My mother suffered from rls and named the condition jumpy leg.
Dr. Gupta,

You should do some research on the BP drug "Catapres" in accordance to RLS. I was on several different drugs, including narcotics (!!!) to ease my restless legs, and when I decided to stop the narcotics, I used Catapres to help with the narcotic withdrawal... and lo and behold, it not only helped with what it was prescribed for, but it eased the RLS! My doctor just shrugged and told me to stay on it if it works!
It stinks - combine insomnia with that and you're practically a vampire.
This weird phenomenon is definitely real... I'm thankful I only experience it on occasion. Late evening, usually -- and most often when I'm still, like trying to sleep on an overnight flight. For me, seems localized to my right leg -- so I spend 10-15 minutes flexing and rotating my ankle and trying to think of something else!

Surely a non-pharma solution lies out there...
My first episode/awareness, of RLS was at age "13"! It was sporadic throughout my life, until the last 3 years when it became constant. As long as I stayed on my feet & kept walking, I was in a comfort zone, but as soon as I went to bed it was uncontrollable & maddening. Sleep was impossible! My Dr. prescribed MIRAPEX, a drug used in the treatment of Parkinson's disease & the RELIEF was blessed! I AM finding though, that about once a year the doseage must be increased. Where one pill worked, it then became two & now, I'm noticing it's moving toward three on occasions.It amost impossible to describe these sensations, but trust me, they ARE REAL!!!!
I kind of thought it was funny when my husband recently complained that his legs "had anxiety". Really though, I know it's no laughing matter, and I'll show this article to him.
This is about my mother. I dont know if she feels anything within her leg but as I used to sleep with her, I know very well that she used to give jerks to her foot even when she was deep asleep. It used to wake me up. She still has this strange habit of shaking her foot when she sleeps. Do you think this could be also because of genes ???
I have had RLS my whole life. I just learned what it was only a few years ago. I am now 28. It quite bothersome and was most intense when I was pregnant (both times). It's a daily thing I have to deal with and it generally increases at night while I'm trying to sleep.

Bless my dear husband for never kicking me out of bed, because I'm sure it's quite annoying.
I have a question. What is the difference between Restless Leg Syndrome and Periodic Limb Movement? I live with Multiple Sclerosis. According to my neurologist, my leg jerks and sudden muscle twitches, are the result of PLM and not RLS.

I do not have an urge to move my legs. They do not buzz or sting or feel like they need to be scratched. They simply jump of their own accord, most often when I am trying to go to sleep, but sometimes when I am wide awake and at a desk for example. Not too long ago, I was at my computer and BAM! - my right knee suddenly jumped straight up and hit the desk. My right leg is usually the one that does the jerking or "jumping," but not always.

Thanks -- Natalie in Alaska
Hi Ann,
OMG! did I have RLS when I was pregnant! It was horrible! ( sorry sharla, another story). I had no idea it was triggered by low iron! My physician never told me that, only that RLS was normal in pregnant mothers!
Anyway, I rarely get it now however; I have a strange claustrophobic feet syndrome as a result. I have a hard time wearing closed toed shoes! I do it when I have to but I don't like it! I find myself kicking my shoes off under tables and such! It really can be embarrassing. You should see the look on people's faces when I tell them I have claustrophobic feet! They think I am nuts! Have you heard of this after effect before?
Thanks for the VERY interesting blog!
Yes, I have RLS and have since childhood. If you've ever wondered what was wrong with that idiot in the airplane seat next to you, it was probably me, twitching to try and relive the discomfort.

I always suspected a genetic cause for RLS. I have tried so many "cures" = including diet changes that had no effect. I am so relieved that someone has made some progress on this.
Mosquitoes don't "sting", they bite.
I have RLS. It usually occurs more often when I haven't had as much sleep as usual. This creates a "downward spiral" since the RLS makes it harder to get to sleep, thus another night of less sleep than I need. After a few days though, I'm so tired that nothing prevents me from getting to sleep. It's a bothersome quirk.
Since when does the correlation of a gene to the incidence of leg "kicks" = CAUSATION? Scientists these days are so quick to jump to conclusions when this very well could be merely a gene that is represented more in people who have a tendency to have more neuronal activity etc... Seems to me this is a ploy to increase sales of this ridiculous "RLS" syndrome. I thought it was enough when they started giving kids amphetamine-like drugs to "cure" ADD/ADHD. Would Mark Twain recommend Huck Finn be given Ritalin? All my buddies who took it tell me the same thing, it's like Meth but slightly less intense, which is why they snort the stuff. Legal drugs! Let's make MJ legal too. Sry, it's a rant but a well thought out one...
I suffer from RLS, and yes, it is worse while pregnant! I can not describe the weird feeling I get in my legs when I am trying to sleep, but there are times I have to get out of bed and walk around just to relive it. I remember in my first pregnancy walking up and down the stairs several times hoping that it would help stop the urge to move my legs and I could sleep. I have discovered that, for me, if I try to keep my feet cold it helps. If my feet are hot, as they often are while pregnant, the RLS gets really bad.
it's not real, i've been often told i use profanity in my sleep that doesn't mean it's genetic, it's because i cuss during the day too
For years I thought I was crazy. I constantly twirl my ankles, wiggle my toes, kick my legs, massage, anything to keep my legs from being still. When they are still it feels as if a very low watt electrical pulse is constantly running from my knees to my ankles. Of course I never told many people because who would believe me? Then I saw an ad in the paper for a study of RLS! I couldn't believe it. Ironically according to your research of iron count, I was unable to participate in the study because I am anemic. Maybe the two are closely related. Thanks for sharing this information.
My calves constantly twitch so much that I can see my pants move with the twitching. At night it's much worse with the twitching causing severe cramping. I have an uncontrollable urge to stretch my legs which also causes cramps. This is definitely a real affliction causing sleep deprivation which causes my legs to ache so deeply that it's difficult just to keep walking all day and being a nurse I'm on my feet a lot.
I sure wish there was a cure for RLS.
Amy, I have RLS...and yes, it runs in my family...I think.
The first episode happened during a bus ride from CA to WA...almost unbearable...not pain...hard to describe...sort of like restless grasshoppers inside my legs trying to get out and tensing up my whole body. About 1963..

It didn't happen again that I remember until about five years ago...2002.
RLS for me happens at odd times during the day or night... if I sit too long.
It is being treated with a low dosage of Mirapex. It works, but if I fly I have to take it just before flight time...otherwise...
I had restless legs when I was taking Paxil, but after I stopped the drug, the restless legs stopped. So what does THAT mean?

I am interested in knowing whether this gene research has been applied to Fibromyalgia/Myofacial Pain Syndrome. I have suffered from both these conditions for most of my 42 yrs. I am excited at the prospect of this kind of research as restless leg sydrome is also one that a lot of FMS/MPS patients also suffer from. Unfortunately at the present time there is no treatment available that works for me. The way you quoted someone saying that it felt like 20 mosquitoes bites is almost what I go through with my arms. The sensation I feel is extreme aggitation, and the inability to get comfortable. There are times when I punch my arms to bring about relief. Also the night is the worst because it is almost impossible to sleep. I describe this here not for sympathy, but in hopes some doctor might see this described, and start research into the similarities, and hopefully bring about gene research into FMS/MPS (if it is not already being done).
Obviously this is only one of many, many symptoms of these two conditions, and I also know that MPS causes the myofacial tissue to harden increasing the pain and discomfort. However, there appears, to me, to be a link that I hope will be looked at in further research.
Sincerely... a hopeful patient in Nanaimo, BC, Canada. C. Hannah
My RLS started right after my third pregnancy in 1957. My doctor at that time ignored my request for some help. So, I ignored it, too, and just suffered through it. About 20 years later, I quit drinking ANY coffee at all and surprise of surprises, my RLS became almost non-existent. It now rears "its ugly head" every so often when I have some caffeine in a coke, but never as bad as it was when I drank coffee.

Barbara Finnie, Gold Hill, OR
I've got it. Had it all my life.
Before I knew what it was, I called it "floaty feet".
When I was a child I used to hang one foot or the other over my bed at night and tuck as much of it as possible under the mattress. Pressure always seemed to help.
As I grew up, sometimes I'd sit on the edge of the tub and hold my feet and legs under hot running water for a couple minutes.
Now, I wrap my feet and calves in ace bandages every night.

After my doc diagnosed it as RLS, I tried a couple of drugs, but have returned to the ace bandages. They seem to work best.
MY husband has RLS and it seems to have gotten worse with age. He is a really heavy sleeper and it doesnt seem to keep him awake (though it keeps me up often enough!)

However, I see signs of it developing in our 4-year-old now. He has a hard time sleeping through the night lately and often gets in bed with us and "kicks" me out of bed ;-)

I have RLS. I didn't know what it was (and thought, as others have said, that everyone must have it), until I read about pregnant women experiencing it in "What to Expect When You're Expecting". Ironically, I did not have as much trouble during my 2 pregnancies as I normally do. I did have major "attacks" while feeding my 2 children, though, especially the late night feedings.
I have found a definite link (for me) between how tired I am and how likely I am to have it. But, I also have problems sitting still in a theater (movie or play) or any other long even. I definitely wiggle - cross the legs, uncross, tense the muscles, relax the muscles, etc.
I asked my daughters pediatrician (shortly before this report came out) if the could tell yet if she has it - my grandmother and mother both had/have it. The pediatrician clearly does NOT have it. (After a slightly pained expression crossed her face - meaning "oh, God, do I have to try to answer this - who knows?), she explained how babies kick a lot at night, etc. But what I've noticed is just BEFORE she goes to sleep, she seems to get restless. I bet she's got the gene.
RLS is real, I've always called it 'twitchy legs', my mom had it too. It has gotten worse as I've gotten older. I would give nearly anything for a full night's sleep. Maybe the medical community will actually try to help patients with it now!
I first experienced my "antsy legs" when I was 21 and pregnant with my first child. It drove my husband crazy. It subsided after I had the baby, but eventually re-entered my life periodically. As I got older, it seemed to get worse. After 20 years of suffering sleepless nights, a neurologist told me that it actually had a name, and at that time, they would put patients on a drug that was meant for parkinson's disease patients. Wow, what a miracle. I could actually take a nap in the middle of the day! I did notice that the longer you were on the drug, the more you had to increase the dosage. My body also seemed to "save up" it's restlessness, so when the drug wore off, if I weren't up and around, it was 10 times worse. Then about a year and a half ago, Requip came out and I tried it. It is awesome and does the trick. I only take it at night, so I still have trouble taking a nap now and then, plus, if I am extra tired during the day, the "saved" up restlessness is pretty bad. At least I can sleep well at night, which I am so greatful for.
what an awful HEADLINE. unless you have this neurological condition (my own legs jerked many times per night when measured in the Sleep Lab), it is easy to dismiss this disorder.

Headlines like this breed misunderstanding and prejudice by suggesting the disorder is Fake.

I have had RLS for the past 8 years or so - my father(he's a neurologist!) has it and my paternal aunt has it....I've found several of my friends have it too. For me it is worse when I'm tired or under stress - plane rides are very tough - movies a challenge - I'm constantly shifting positions. I'm always felxing my legs and feet. When I've taken Zoloft it's worse as well. My Dad doesn't want me to take the anti-Parkinson's drugs as he says they will only work for a year or so then teh RLS will get worse! It's a very real condition and I hope a drug company comes up with a solution.
I also have RLS and I take Requip and it is a wonder drug. I recommend anyone who is not taking it to ask their Doctor about it. Also they just came out with a new drug for RLS MIRAPEX, so there are 2 drugs now.
Visit the Restless Legs Syndrome Foundation ( for more informatino on living with RLS.
You bet it's real! And, I'm not at all surprised that it's a genetic thing, since my father was also a sufferer, as am I.

For many of us who don't respond to increases in calcium/magnesium/iron, Mirapex and Requip are "better sleeping through chemistry." But it would be wonderful to have some sort of breakthrough that would end the need for "drugs."

To those scientists who are working on RLS, keep up the fight. We with RLS will bless you in our dreams!
The first time I heard someone describe the symptoms of RLS (during an interview on the radio)I almost cried, because I knew then that I wasn't crazy. My symptoms didn't appear as a result of anything like pregnancy or diet. I wasn't pregnant, and I've always taken calcium and vitamins with iron. They just suddenly appeared one night. I spent about an hour doing bicycle exercises on the bed, until I was able to fall asleep. My husband, fortunately, worked midnights, and I never told him about the problem, because it's so hard to describe. I tell people that it feels like my legs are going to explode unless I move them to get rid of the "energy."
I have had RLS since I was a child.It started as kicking feet during sleep. It then went to jerking mostly while I sat for periods of time, like movies, flights, long drives. Now it is pretty unbearable. It was given a name by my doctor about 5 years ago and I was prescibed Quinine, whick works. I mentioned to my Mom and she has had it for decades and now I have discovered several of my 9 siblings have it also.
I am interested in reading about the low iron and needing more calcium. As a child I was dianosed with low iron and had to go on iron pills. I would like to hear more of this.
As a sideline, the restlessness seems to have moved into my right hip, causing me pain. The syndrome is more severe in my right leg.
My family also has problems with RLS. I also have Fibromyalgia. I find relief from restless legs by soaking in a very warm bath when it first starts and then I can relax enough to sleep. Tylenol also seem to help.
Where does the figure of 20 Million come from?
I agree with the below poster that iron pills cure RLS. I only had it for a few weeks, during my sixh pregnancy. When I started taking iron pills, it went away. Also, my moderate-to-severe cravings to eat ice and drink pepsi that occured during ALL of my 6 pregnancies went away. I wish I had taken them earlier.

My 8 y/o son has, for some time now, had trouble sleeping. He has also described a feeling in his legs which I suspect to be RLS. I plan to try boosting his iron intake, through food and/or suplements.
THERE IS HOPE: I have finally found relief after suffering with severe RLS for the past 16 years. I am a 41 year old married mother of four. I first began having symptoms of RLS when I was pregnant with my first child. Over the years my symptoms became more severe with increased frequency. Over the past three years (with the exception of the last 3 months) a full night's sleep had become non-existent. Like many of you suffering with this debilitating disorder- All I wanted was a full night's rest, the kind of rest I could only vaguely remember.

I know my suggestion may seem elementary, silly and perhaps not complicated enough to actually work, but after three months of consistently using these products I am completely convinced they work.

Here is my revelation...My Husband talked me into trying Breatherite nose strips. I was complaining about having difficulty breathing through my nose (the inside of my nasal passages often swell making breathing through my nose more difficult). This was not a new condition, and during the day I barely notice it but at night I would have to lie on my back for 10-15 minutes and allow my nasal passages time to open before I rolled over and fell asleep. On this particular night my husband insisted I try the Breathright nose strips, I finally conceded and placed the rather unattractive nose strip on and off to bed I went. I slept like a baby. Fluke? So the next night I wore the strips again, and I had the same peaceful results. I have worn the strips every night since the first night and my RLS has only interrupted my sleep twice in three months.

You have to understand I was up every single night for 16 years from 2-4am with my legs aching, throbbing and every other indescribable word to define this annoying syndrome.

I do not know why the strips work for me? Could it be I am getting a better oxygen supply to my muscles? Or am I able to establish a deeper sleep and therefore able to stay asleep during my leg episodes? I don't know, I don't care- I am sleeping for the first time in 16 years and loving it.

If you have tried every thing else and are as exhausted as I was please just try the nose strips- they just might help and they certainly won't hurt. Good Luck and sweet dreams.

Well Rested in Kentucky
I've been suffering with RLS for a while now. Just getting a good nights sleep is a blessing. Although its not like mosquitos biting me, its more of a pulling sensation in my knees and elbows! Although I was worried about talking about my symptoms to family, once I let it out, I was surprised to find my sibling also suffering from the same condition. I hope to research more about it and hopefully there will be a cure without the side-effects many other prescribed medicine has.
One thing I see over and over here is the assumption that restless leg syndrome (RLS) and Periodic limb movement disorder (PLMD) are one and the same problem. While they often work in tandem, they are quite different and should be looked at separately for more complete treatment options. They are not the same thing. I suffer from severe RLS, and thankfully am aware enough (from being awake) enough not to kick anyone, though the constant rythmic movements to help ease the awful sensation crawling up my feet and calves, into my thighs and pelvis, and in the worst cases my shoulders, neck and head..Certainly don't help my bed partners find any sleep of their own. Before it got to this point, some calcium and a little aleve were beautiful things in my life. If you can use it, it works, and you can keep using it..GOOD FOR YOU!!
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