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January 11th, 2011
11:30 AM ET
Get Some Sleep: Is restless legs syndrome real?One question that I am often asked is whether restless legs syndrome is a disorder made up by the pharmaceutical companies. I can see why people might think that; few people, including doctors, had heard of it 20 years ago, but media reports and ads for medications have put the term into common use. But as someone who has treated hundreds of patients with this disorder, I can attest to its existence as well as its ability to seriously affect patients’ quality of life. Restless legs syndrome (RLS) is not the same as foot tapping, nor is it the same as leg cramps. Patients complain of strange and disturbing feelings usually in their lower legs that usually happen only in the evening when they are sitting or lying down. They move their legs voluntarily in an attempt to find relief. Unfortunately, the minute they stop moving or rubbing their legs, the feeling returns, hence the repeated movement. In severe cases, the symptoms can begin earlier in the day and can involve the arms or other body parts. However, when people first develop this problem, it almost always starts in the evening and ends up preventing them from sleeping, which is why it's considered a sleep disorder. This is a clinical diagnosis, meaning that there is no test that uncovers it. Rather it is diagnosed based on the constellation of signs and symptoms that patients present. However, we often do an overnight sleep test because there is a disorder that can go along with RLS which is called Periodic Limb Movement Disorder (PLMD) and this entails rhythmic kicking while asleep. Sometimes people have PLMD without having RLS, and not all people with RLS will have significant limb movements during their sleep test. There are population studies that show varying prevalence rates of 5-15%, but only about 3% of adults and 0.5% of children have it often enough or severe enough to warrant treatment. There appears to be a genetic component because 40% adults and 70% of children who have primary RLS report that at least one first-degree relative also suffers with this condition. In most studies, it is approximately twice as common in women as compared to men. One study found that 27% of pregnant women complained of RLS symptoms. We do not understand what causes RLS but there seems to be a dysregulation of dopamine, a naturally occurring neurotransmitter. RLS is greatly increased in patients with Parkinson’s disease, which involves a depletion of dopamine. It should be noted that people with RLS do not have a depletion of dopamine, just a dysregulation, and there is no evidence that they are at increased risk of developing Parkinson’s disease. Iron deficiency can also be involved because in order to synthesize dopamine it is necessary to have sufficient amounts of stored iron in the central nervous system. Therefore, we do see an increase in prevalence of RLS in people with anemia, end stage kidney disease and in pregnant women, all conditions that involve low levels of the storage form of iron, which is known as ferritin. There is a simple blood test that can be checked in people with RLS symptoms and if the level is below 50 ng/ml, then oral iron replacement is indicated. In fact, it is now recommended that all patients with RLS take extra iron each day. We also know that certain medications can cause or aggravate RLS, medications such as antidepressants, over-the-counter antihistamines and nausea medications such as metoclopramide. Substances such as caffeine, nicotine and alcohol can also worsen the symptoms of RLS. If symptoms are very mild or infrequent, then people can try stretching exercises before the time that the symptoms typically start or they can try doing mentally stimulating tasks such as crossword puzzles, which can help distract them. However, if RLS symptoms occur more than twice a week, most patients want treatment. Besides adding more iron to the diet, there are several classes of prescription medications that can be used, the most common being dopamine agonists (i.e. synthetic dopamine replacement). It is important that physicians have experience treating RLS because older dopamine agonists such as carbidopa/levodopa must be used with caution as they can actually worsen the RLS symptoms. Lisa Shives, M.D., is the founder of Northshore Sleep Medicine in Evanston, Illinois. She’ll blog on Tuesdays on The Chart. Read more from her at Dr. Lisa Shives’ Sleep Better Blog. The information contained on this page does not and is not intended to convey medical advice. CNN is not responsible for any actions or inaction on your part based on the information that is presented here. Please consult a physician or medical professional for personal medical advice or treatment.
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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love. Recent Comments
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scsc2010 I really wish I could help. I hope someone can give you some advice. Some of your symptoms sound like restless leg, but I don't know about the others. They could be caused BY some of the meds you take. Do you drink a lot of tea,soda or coffee? Caffeine can aggravate this I think. And it does sound like stress aggravates it for you. Ever tried any kind of exercise that would work/stretch your legs? I'm grasping at straws. I'm not a doctor and I hope you get some relief as I know this can drive you nuts. Good luck to you.
Sherri mentioned stretch exercise and I now remember that when I get RLS while watching TV or reading, when I ride on my stationary bicycle for about 10 minutes, the RLS symptoms go away. I often find myself stretching my legs to unusual positions to get relief when I'm in bed. I do believe, now that Sherri mentioned it and I remembered it, that STRETCHNG is key. Thank you, Sherri.
Have had it for years, everyone in Mom's family had it. Benadryl will set it off, although it will come and go even if I don't take it. Like others have stated, I have found that magnesium citrate will stop an attack, especially if I get on the elliptical trainer for 15 minutes or so an hour after I take the mag citrate. I can feel it in the sole of my left foot, my left ankle, my left calf – it feels like my foot being tickled, only it's in the bones. It builds up until my foot jerks, then stops, and starts building up again.
I have had RLS/PLMD since I was in my twenties, I now have a 30 yr old son, do the math. @Mark I also have had back surgery with 8 vertebrea fused together. I asked my Dr. if this would help my RLS/PLMD, he said sorry but no. So that wasn't the cause of mine. @ all who believe it's not real, are you willing to go to a sleep Dr. and ask him about it, and maybe see some films or graph of people with this problem. Then come back on this blog and state your opinons? I have tried everything suggested through the yrs. for help and will continue to, natural or medication. I did find that having an orga#m did help for a few yrs. but then stopped being effective. But alway's worth a try! I found the soap thing to be useless for me. I will try some of the things I learned on this blog. And I wish you all good luck.
I have had RLS every since i went to work as a nurse ...Concrete floors ? walking a lot ? Standing a lot? What ever , but when you can't sleep its terrible . half a sleep and your legs want let you sleep or rest. I was told to ask my pharmacy ( kept behind counter ) for Quinine . I got it and it worked , then the Drug Co. Got involved And came up with their magic pill . they stated Quinine did not work . So you can no longer get it , of course their med didn't work either/with lots of side effects. I drink TONIC water Which contains quinine about oz. when my legs start. In 30 min. i can get some sleep
I have always been an active person but then stopped for a few years. My legs would hurt every night when I went to bed. Then I started working out again and now I feel fine. I do believe RLS is real. Your legs are restless because they are born to move. Get off the lazyboy and move! There are so many people who feel like medication will solve everything but hardly any of these comments are mentioning that people should get off their a** and exercise. Stupid pharmaceutical companies have everyone tricked into believing medicine is the answer. Take care of your bodies by exercising and eating better and you won't have half as many problems. It's like everyone is a hypochondriac now.
NIsa, I see you say that you are taking 100 mgs of Amitryptilene at bedtime. Did you know that one of the worst classes of drugs that can make RLS worse is the tricyclic antidepressants?? That is almost truly universal. Of course, talk to your sdoctor, but any doctor that specializes in RLS knows not to prescibe those or SSRI's like Lexapro and Prozac to someone with RLS. It really is soemthing you should look into. http://www.rlshelp.org has a great treatment page, which is maintained by an RLS expert, who is a neurologist. It is always a red flag when I se someone is using one of these classes of meds. I have had RLS since I was 14 and maintain and moderate several online support groups since 1998. Please look into that. You may find that could be your worse problem. Good luck!
replied to the wrong person about the antidepressants. Sorry. People with severe RLS could never get that comfortable in a recliner to be told to get up and move. If only it were that easy for all of us. There are definitely different levels of severity for RLS. I cannot spend more than a few minutes sitting down.Yes, our legs were born to move, but not 24/7. Remember that when you make a blanket statement like that. RLS was discovered and named in the 40's and I am quite sure that there were no drug ads back then. I know people from 16 different countries and only the ones from the US have ever even seen a drug ad. If only we could sit long enough for someone to tell us to get up and move. RLS is also genetic in some cases. Both of my sisters and nieces have RLS and PLMD and we are all severly sleep deprived. My niece who gets the least sleep is the one who bgets the most the exercise. hmmm, go figure. She is an athlete, plays softball, runs, etc.
Nisa, that is just such a horrible and unnecessary comment – I don't even understand why you read the story. You are implying everyone with RLS is lazy and that is ignorant. You clearly do not have RLS and therefore no idea what it is like and how it affects sleep. I have been a dancer and runner my entire life and I have RLS. I am NOT lazy. Get off your high horse. I do not take medication for it, but my mother does. Don't be rude.
It seems you have a very closed mind. hmmmm where have I seen these exact words beofre. Oh, I know, "Dr. Carolyn Dean, the self professed "Doctor of the Future" said the same exact thing on her web site before she got so many comments for people with REAL RLS, that she took the artcile off her web site. "RLS, Don;t Believe the Media Hype" is still available on some other web sites that are unlucky enough to be connected with her. Her exact words , in her article, said "Get your lazy a**es out of your recliners and get some exercise". We (my groups) were very hapy to explain to her that if you truly have RLS, relaxing in a recliner is but a dream or a fantasy, because we CANNOT sit still. Everyone is NOT a hypchondriac, and sleep deprivation kills. You are probably Carolyn that wrote the above "lazy" comment, in the first place, or someone stole it off your article which still haunts the internet in a couple of places.
I've had RLS since childhood. Worse as an adult. I tried everything under the sun. Good diet, multivitamin, iron, vitamin D and Requip needed. I finally sleep well. And from half marathons to forced bed rest after surgery, underweight from travelers revenge to overweight after baby, stretching before bed, hot bath, neither excercise nor weight or other behavioral things had anything to do with it.
I had RLS for years before I knew it was something other than some sort of weird nerve problem caused by my back troubles.
I drink Tonic Water with Quinine, the symptoms stop within minutes and I can sleep. Easy, no drugs. Quinine is taken by people with leg cramping problems.
Leg CRAMPS are NOT RLS, as it says in the article. Anyone who has RLS should know that leg cramps are NOT the same as RLS, taking Quinine is now not even recommended by the FDA any more for leg cramps, only malaria. Leg cramos are muscular. RLS is neurological.
I have had RLS for close to 10 years and unless I take medication, I will not be able to sleep (current dose 100mg Amitriptyline 2 hours prior to bedtime). It is very real and am at a loss as to why anyone would question it. For me, tonic water/quinine sulfate, heavy blanket on my legs, pot, iron, etc. have never been effective.
MIchelle, did you know that Amitryptilene is in one of the worst classes of meds that we RLSer's can take? Tricyclic antidepressants will make RLS worse in most people who take it. The other bad class of meds are SSRI's like Prozac.
http://www.rlshelp.org has a great treatment page, with a list of foods and drugs to avoid. I highly sugest that you read this. Amitryptilene was the drug that really sent me over the edge when my doctor thought it would help my migraines and help me sleep. Do you have PLMD ( leg movements in your sleep)? I highly suggest that you talk to your doctor about this, hoping that he knows something about RLS. Most rLS experts would never give an RLSer any tricyclic. There is always an exception to every rule, but it is truly one of the worst meds you could take with RLS.
I have fibromyalgia with constant migraine that never goes away–i also have cold feet and hands and have to wear 2 pairs of sock with down filled slippers and gloves in my own house when the temp is 75 inside. I have something that the doctors refer to as "myoclonic jerks" as it is very similar to RLS but it involves my arms as well as my legs–RLS meds have not worked and neither did quinine, or stretching, or doing crossword puzzles to distract me–it used to be that i would just flail about in bed – arms and legs-sometimes one side only or both side-now: i'm not flailing but i flop back and forth from my right to left sides every 1-2 minutes-i try to lay on my back (which i'm usually about 50% side sleeper and 50% back sleeper) and i am unable to lay still–but its not JUST my legs! anyone else like this? as everything else with fibro–every day is a crap shoot–what, where and how will i hurt today?
RLS can spread to the arms, shoulder baldes, trunk, back, etc. I moderate several online support groups for RLS, and at least half of us have full body RLS at times. Mine is the worst between my shoulder blades. My groups would love it to be called bRestless Body Syndrome, just not "legs". I really do know what you are going thru!
Firstly, doctors that say RLS isn't real are simply showing their stupidity/arrogance. To those who suffer with it, these doctors are just a waste of time. I have had RLS for the past 10 years. The best I can manage these days, even with medication is about 4-5 hours of sleep. I can't sleep with my wife as my tthashing around stops her from sleeping. It is so insidious. I hear people call it 'Restless' Leg Syndrome and have to laugh. That label sounds so benign and trite compared to the damage it does to you on so many fronts. I think it should be called 'DLS',... Demonic Leg Syndrome.
I like that, Mike! My dog will not even sleep with me any more! DLS sounds better. lol I have had RLS since I was 14 and developed it after I broke my back.
I had bad leg cramps and the only thing that really helped me was privic. You can try them too, http://www.privic.com, hope it can help you too!
Leg cramps are NOT RLS.
I was diagnosed with Morton’s Bilateral Neuromas whose symptoms include RLS. Morton's neuroma is a swollen, inflamed nerve located between the bones at the ball of the foot (usually either the second or the third spacing from the base of the great toe). A Morton's neuroma is caused by compression of the nerve of sensation between the ends of the metatarsal bones at the base of the toes.
I assure you RLS is very real and threatens health through sleep disruption. Immune deficiency, low body temperature, memory problems, neurological issues, and high blood pressure are just some the potential illnesses induced by this problem. I was included in a study evaluating different treatments including shots directly into the affected nerves and surgery. The shots worked wonders for me but unfortunately I was unable to complete the program. It’s worth checking out even if you do not have foot pain- I was not aware of foot pain.
Has anyone tried either chamomile tea, or working out for relief?
Anything that helps you relax is good, whatever it may be for you personally. I love tea, any tea without caffeine, of course. Too much exercise can set off RLS, as well as too little. You have to find the right level for you. The idea that some people have that you can"exercise your way out of an RLS attack" certainly does NOT work for everyone.
I have fibromyalgia and severe RLS at nite (can't keep still for even a few seconds) I take approx 750mg magnesium approx. 30 minutes befor bed. No RLS. Please check with your doctor before you take 750 of mag. Got my doc's approval. If i take more than 750 of mag I get serious headache
Drugs can seriously impact your male fertility. It can also harm your unborn baby. Remember, the first thing to do while figuring out how you are trying to conceive fast is to stop consuming alcohol before getting pregnant
Alcohol does not mix well with RLS, in the first place, or the approved RLS meds.
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I have the answer what you need to do to get instant relief. If interested, e-mail me at: computerlady@live.com (I am an author, teacher and therapist in San Jose, CA) I found a cure for me and others and will be happy to give you the recipe. It is what you eat after 5 o'clock that causes your nervious system to react. I couldn't enjoy a movie or go to the threater as I'd have to leave. Let me give you my recipe. The problem is caused by the additives/perservatives you eat at night – anything that has a shelf life has these additives/perservatives in it. They seem to attack one's nervious system and cause legs to become numb and aggitative to the point where you can't sleep. A Margarita Mix is the worst – vinegar, beer, anything that has those things added to it. Be a label reader. The very first night you watch and are careful what you eat before you get ready for bed (4 to 5 hours before!!!), you will have relief. Keep trying till you locate the food source of this problem and you will have a good night's sleep – believe me. Will be happy to discuss further. Maggi F E-mail: computerlady@live.com
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