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Thread: Restless Leg Syndrome: Is This Real Or Fake?

  1. #1 Restless Leg Syndrome: Is This Real Or Fake? 
    Forum Senior MoonCanvas's Avatar
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    I was never diagnosed, so I have no input on this. I've watched a few commercials and apparently it's irritability in the legs? And no, this is not turning into a 2000 page thread of why I think it doesn't exist. My perspective is neutral so please enlighten me.


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    When I was a kid, I couldn't keep my legs still. Always jiggling.
    It drove my grandmother crazy. One day, while watching T.V., my legs jiggling like Bill Cosby's jello bowl, she threatened to hit my with the iron (Like for ironing shirts) if I kept jiggling my legs.

    I took many whacks from that iron, I kid you not. But from age 16 onward, my legs never jiggle nor wiggle when I'm sitting down.


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    It's an indicator "sometimes" of ADHD. I jiggle my legs constantly due to high volumes of caffeine intake.
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    Approximately one in six people suffer from restless legs syndrome, especially those over 50.[1] Restless legs syndrome (also known as restless leg syndrome or RLS) causes unpleasant feelings in the legs, including crawling sensations, prickling, aching, tickling sensations, and a feeling of tiredness or heaviness of the legs, as well as an urge to move the legs when sitting down or lying in bed.[2] Even when asleep, the legs can move at any time in response to the syndrome's effects, sometimes causing the sleeper to have poor sleep. Sometimes it can be difficult to walk for sufferers of restless legs syndrome.

    Prevention of it focuses on the risk factors that might impact it; although the precise cause is still not known, there are some factors that seem to predispose a person to it, including genetics, gender and age.[3][4] This article will explore ways to help prevent restless leg syndrome.

    http://www.google.com/url?sa=t&rct=j...NtXH1jkSPBnDVQ
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  6. #5  
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    Quote Originally Posted by shlunka View Post
    It's an indicator "sometimes" of ADHD. I jiggle my legs constantly due to high volumes of caffeine intake.
    You know, the link above specifically states high caffeine intake is one of the causes of Restless Leg Syndrome. Coincidentally enough.
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  7. #6  
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    As a sometimes sufferer of it, I can attest to it being very real. I've lost many an hour of sleep to it. I'd be laying there and I'd start getting a growing sensation in my leg that made me want to move it, it was uncomfortable and impossible to ignore.
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    My understanding is that it is more than just restless jiggling, it can result in quite violent spasms and kicks.
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    Quote Originally Posted by Strange View Post
    My understanding is that it is more than just restless jiggling, it can result in quite violent spasms and kicks.
    Yep. My father suffers from it. If he doesn't take his medication, he'd be up all night. I have had glimpses of it myself from time to time.

    I think it is the type of syndrome that could possibly be treated quite well with placebos though.
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  10. #9  
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    I happen to think it's 'real.' After longer runs or bike rides, this can happen to me. It's such a weird feeling. I have found that the natural product 'Restful Legs' has helped me. Whether that's in my head or not, I don't know. lol But, it seems to help, anyways.
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  11. #10  
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    Quote Originally Posted by Janus View Post
    As a sometimes sufferer of it, I can attest to it being very real.
    Ditto. And it's a shame that some people think that it's an "invented" disease so companies can sell "cures".

    Some describe it as a crawling "worms" or "insects" sensation in the leg muscles, but mine is just itching. Mine almost always occur around bedtime, and always occur in the "fronts" of my thighs, that is, the rectus femoris (part of what's called the "quads"), that extend the lower leg. I have the idea that it's related to "carbo loading" because eating before bedtime tends to induce it, and because exercising the affected muscles (walking strenuously, deep knee bends, etc) seems to relieve it.

    Also, striking these muscles (which causes them to spasm or charlie horse) seems to relieve it, although usually only temporarily. (It's odd to think of charlie horses as providing relief.) And rubbing the affected muscles or rolling objects (such as hand weights) across them also gives them some, although temporary, relief.
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  12. #11  
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    Low potassium can contribute too. I get restless legs often and last time i was in the hospital they told me my potassium was extremely low. Gave me horrible suppliments that made me throw up. I prefer to try to get potassium through food but my kids eat all the bananas before I get a chance.
    Speaking badly about people after they are gone and jumping on the bash the band wagon must do very well for a low self-esteem.
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    I also suffer from RLS. It makes it very difficult to fall asleep. There's just no way to really get comfortable. I find Tylenol helps, but that's just me.
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  14. #13  
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    Quote Originally Posted by AlexG View Post
    I also suffer from RLS. It makes it very difficult to fall asleep. There's just no way to really get comfortable. I find Tylenol helps, but that's just me.
    google 'restful legs.' it's an excellent product. and it's natural.
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    Quote Originally Posted by MoonCanvas View Post
    I was never diagnosed, so I have no input on this. I've watched a few commercials and apparently it's irritability in the legs? And no, this is not turning into a 2000 page thread of why I think it doesn't exist. My perspective is neutral so please enlighten me.
    I have a relative who has distonia of the foot and the syptoms for this condition are remarkedly similar, with her it started in the big toe and progressed to the whole foot. The problem was she just couldn't keep it still, but also the tendons kept pulling here toes up. She had to see several doctors including a specialist neurologist. They tried her on all sorts of pain killers to take the pain away but also parkinson's disease drugs to supress the nerve signals but nothing worked. After even morphine failed to alleviate the pain the only thing left was hypnosis. This is the only that's worked, but it really does work.
    So perhaps a lot of these types of conditions can be very real physically for the patient yet possibly also have a strong psychological component to them.
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    Seeing as it's a physical disorder, I can find it believable. Those commercials were pretty shitty though, they didn't explain anything to me and just showed some woman laying on a bed. I guess I was supposed to just automatically know that Restless Leg Syndrome meant restless legs...
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  17. #16  
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    Quote Originally Posted by MoonCanvas View Post
    Seeing as it's a physical disorder, I can find it believable. Those commercials were pretty shitty though, they didn't explain anything to me and just showed some woman laying on a bed. I guess I was supposed to just automatically know that Restless Leg Syndrome meant restless legs...
    The commercials are supposed to make you worry that maybe you have it so they keep it general. You are expected to get worried and ask your doctor to test you for it. If you don't mention symptoms or concerns to a doctor they may not know to test you for something. So the more paranoid,hypochondriatic, er, aware patients are about possible symptoms the more likely they are to ask their doctor for pills to make it better. Whiny patients mean higher pharmaceutical sales.

    This is not to imply that I think it is fake but many people are like me and will ignore symptoms like minor pain, assuming it is just a normal part of aging and no big deal. But if they find out they don't have to live with it they will jump at the chance to rid themselves of it.

    It is a little known fact also, that restless leg syndrome in married women is the leading cause of early morning bruised testicle syndrome in men. Just ask Neverfly.
    Speaking badly about people after they are gone and jumping on the bash the band wagon must do very well for a low self-esteem.
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    If you go to a gym work out on the leg machines and work the calve muscles along with walking or jogging. If you spend a lot of time on your feet or sitting with your feet on the floor your blood in the legs doesn't circulate as well as it should, because of gravity. Once you get the blood circulating better in your leg muscles during the active part of your day, you will experience less ALS when you lay down for sleep. This has been my personal experience, and if it's worked for me, it's a good bet it will work for others.

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    Quote Originally Posted by Neverfly View Post
    When I was a kid, I couldn't keep my legs still. Always jiggling.
    It drove my grandmother crazy. One day, while watching T.V., my legs jiggling like Bill Cosby's jello bowl, she threatened to hit my with the iron (Like for ironing shirts) if I kept jiggling my legs.

    I took many whacks from that iron, I kid you not. But from age 16 onward, my legs never jiggle nor wiggle when I'm sitting down.
    But, restless leg syndrome has been the bane of the aged; you are a young person. Wait a couple decades and re-evaluate! joc
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  20. #19  
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    Quote Originally Posted by shlunka View Post
    It's an indicator "sometimes" of ADHD. I jiggle my legs constantly due to high volumes of caffeine intake.
    Therefore, it follows that you enjoy flailing your legs about? joc
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    Quote Originally Posted by cosmictraveler View Post
    Approximately one in six people suffer from restless legs syndrome, especially those over 50.[1] Restless legs syndrome (also known as restless leg syndrome or RLS) causes unpleasant feelings in the legs, including crawling sensations, prickling, aching, tickling sensations, and a feeling of tiredness or heaviness of the legs, as well as an urge to move the legs when sitting down or lying in bed.[2] Even when asleep, the legs can move at any time in response to the syndrome's effects, sometimes causing the sleeper to have poor sleep. Sometimes it can be difficult to walk for sufferers of restless legs syndrome.

    Prevention of it focuses on the risk factors that might impact it; although the precise cause is still not known, there are some factors that seem to predispose a person to it, including genetics, gender and age.[3][4] This article will explore ways to help prevent restless leg syndrome.

    http://www.google.com/url?sa=t&rct=j...NtXH1jkSPBnDVQ
    MIGHT impact it, cause unknown? Take down the old carpet beater off the wall, brandish it forth, while implying it's use over the RLS victim's back will be forthcoming, and voila, the problem dissipates! My grandpa was right. joc
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  22. #21  
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    Quote Originally Posted by KALSTER View Post
    Quote Originally Posted by Strange View Post
    My understanding is that it is more than just restless jiggling, it can result in quite violent spasms and kicks.
    Yep. My father suffers from it. If he doesn't take his medication, he'd be up all night. I have had glimpses of it myself from time to time.

    I think it is the type of syndrome that could possibly be treated quite well with placebos though.
    What, exactly, does this mean? That my grandpa's cure likely would work? (inflict counter-irritation of a greater magnitude, making the victim completely oblivious to the RLS). jocular
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    RLS has recently been renamed to Willis Ekbom Disease - for several reasons. But, I'll get to that later.

    The OP asked if this was a real condition. Since this is a science forum, I won't bore you with my 40 year history of it (since I was a child), rather with the science.

    To date, five genes have been found related to WED/RLS. Significant brain differences exist in people with it vs people without it. These include brain cells in the substania nigra working incorrectly to the misregulation of dopamine to having 5 times the amount of glutamate compared to controls who do not have it. Anyone with it will have certain odd things happening in their body that do not happen in people who do not have it. Unfortunately, for all we do know, there is much we do not. We know iron is involved, but not why or how to get iron to the brain where it's needed. We know dopamine, GABA, and endogenous opioids are likely involved - but not why or what to do about it. We know that pregnant women have a 30% chance of having it in the third trimester and that people with kidney failure have it 80% of the time. We still don't know the exact cause or how to treat it. We treat symptoms and use drugs that appear to make it better, without yet being able to develop drugs that target the cause - because we don't know what it is.

    Yep - it's real.

    Most people get the wrong idea because of the name, in my opinion. The legs aren't restless, really. This is a movement disorder that usually starts with a weird, nasty, uncomfortable, icky and sometimes painful sensation. When the sensation starts, you feel as if you MUST move. You just must. If you were in a straighjacket, you'd roll around to stop it. So, the movement comes because you have to get rid of the sensation. Oddly enough, a small minority of sufferers never get the sensation, just the urge. Other than that, it's identical. The urge to move and the sensations are worse in the evening and when at rest - so, at the movies, at dinner, watching TV, at the opera, in bed. For people with severe symptoms, they can occur much of the day, too.

    While it absolutely occurs at higher rates as we age, children can and do have it - I don't know the percentage. It is often more severe in those who have an obvious genetic link (parents with it, for example) and for those who exhibited symptoms when young.

    Per things making it worse, that's a mixed bag. There isn't really any definitive study that I know that proves caffiene makes it worse, for example. But, there is a lot of anecdotal evidence that caffiene and alcohol make it worse. There is proof that antipsychotic drugs and old school antihistamines (think dipenhydramine) make it worse for almost all people who have it. Other drugs, such as anti-depressants, can cause increased symptoms in up to 20% of sufferers.

    In terms of making it better, again, not a lot of research supporting vitamins and minerals unless the person is deficient. A person deficient in iron, vitamin D, someof the B vitamins definitely can reduce symptoms by taking these. There is one study showing magnesium helps, but it's not been replicated and is from the 90's. Moderate aerobic exercise is proven to reduce symptoms in one small study that I am aware of. Many sufferers agree - if you are not used to exercising, it's often worse initially, but then improves in a few weeks and the symptoms decrease.

    As noted by someone above, it is highly suggestible, as pain is. There are few problems that we have a lot of control over. Cut your finger and stare at it, it likely hurts. Get sidetracked by something and you might forget about it. WED/RLS is also like that - not sure why, but likely it's related to what is called attending. When you concentrate on something that is interesting, you are stimulated and awake. This likely reversese the quiet resting state that induced the sensations/urge to move in the first place. So, one great way to keep it at bay is to stay interested and immersed in fascinating stuff - but hard to do when it's time for sleep.

    So, why rename it? As I noted, the legs aren't really restless. The urge to move and the sensation are what drives the whole thing. Also, it's not just in the legs. As I type this, mine is in my arms. Lightly, but there. There are cases of it being in just about every body part. Fortunately, that is much more rare. Also, we know enough now to call it a disease, not a syndrome. Last, the name was a huge target for people to make fun of and minimize. The name change will hopefully generate more research dollars.

    Per the legs moving on their own - that is periodic limb movements, or PLMs. 80 percent of people with WED/RLS also have PLMs and some people with WED/RLS may not realize the legs moving on their own isn't really the WED/RLS, but rather the PLMs. People who don't have WED/RLS also can have PLMs, though. So, it's not just a WED/RLS thing.

    PLMs can occur when asleep - then they are called PLMS - Periodic Limb Movements during Sleep. They can occur when waking - PLMW - Periodic Limb Movement during Wakefullness. These are actual jerks of the body part (and they can happen in the arms, too). The jerk is from the big toe, the ankle, the knee, or the hip (or wrist, elbow or shoulder). The affected body part moves up, tightens, then relaxes. These are different from hypnic jerks that people feel when falling asleep. PLMs are very strange in the sense that they cause no problems for most of us who have them, but in some of us, they are significant cause of sleep disruption. For what it's worth, many with sleep apnea have PLMS that is greatly reduced when the apnea is treated.
    Last edited by viewsaskew; August 17th, 2013 at 12:43 AM.
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    Quote Originally Posted by AlexG View Post
    I also suffer from RLS. It makes it very difficult to fall asleep. There's just no way to really get comfortable. I find Tylenol helps, but that's just me.
    I would prescribe two glasses of delicious home-made Blueberry Wine, consumed slowly before retiring, instead of any NSAID medication. Additional benefits accrue due to the anti-oxidant flavonoids abundently present in blueberries. Trouble is, blueberries being among the best, commercial wine-makers rarely mess with them. Homemade is better, anyway! jocular
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    Quote Originally Posted by Bad Robot View Post
    If you go to a gym work out on the leg machines and work the calve muscles along with walking or jogging. If you spend a lot of time on your feet or sitting with your feet on the floor your blood in the legs doesn't circulate as well as it should, because of gravity. Once you get the blood circulating better in your leg muscles during the active part of your day, you will experience less ALS when you lay down for sleep. This has been my personal experience, and if it's worked for me, it's a good bet it will work for others.

    I get cramping in my legs and feet. Funny thing is everyone says something different. I just drink 8 ounces of tonic water a day and it relieves it. (quinine) GF has RLS, and it can be miserable.

    I power walk the beach (barefoot and in about ankle to calf water...depending on the surf that day) 3 days a week and work out at the gym other three and Mainland walk 18 holes!
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    I followed all the links on the Restful Legs product. There's a fine print disclaimer at the bottom of the not-very-informative page on the product. http://www.restfullegs.com/

    Hyland's Restful Legs is not intended to treat Restless Legs Syndrome (RLS), a diagnosis which requires professional medical attention. Restful Legs relieves symptoms of agitated legs, leg jerks and tingling, and does not treat the overall condition of RLS. Hyland's recommends that you see a physician at the onset of your symptoms to receive a proper diagnosis.
    In fact, it's a homeopathic preparation, so it's likely to be useful only to people whose problem will respond to 'feeling better' about it.

    I might add that restless legs, of a sort, not the specific genetic condition, are a not very nice additional bonus to various neuropathies and to some deficiencies of minerals or vitamins. So even if you're not part of a family with such a history, it might be worth talking to a doctor about it.
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    Welcome to the forum. It never ceases to amaze me what will bring someone in to post their first post, but it's obvious you have a passion for this topic. Thanks for your post, and I hope it will not be your last post.
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    I suffered from this dreadfully as my liver disease progressed to cirrhosis. Also the treatment for Hep C didn't help much. It used to occur during the evening when I would start to feel the need to tense up my leg muscles really hard and then release them again because they felt so irritable. There was no ignoring it. I think its a result of systemic inflammation - I don't suffer from it any more thankfully.

    Of course people will doubt its an illness and so do I - I think its a symptom of metabolic disorder and part of pre-diabetic insulin resistance.
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    Quote Originally Posted by adelady View Post
    I followed all the links on the Restful Legs product. There's a fine print disclaimer at the bottom of the not-very-informative page on the product. Restless Legs | Hyland's Homeopathic
    Hyland's Restful Legs is not intended to treat Restless Legs Syndrome (RLS), a diagnosis which requires professional medical attention. Restful Legs relieves symptoms of agitated legs, leg jerks and tingling, and does not treat the overall condition of RLS. Hyland's recommends that you see a physician at the onset of your symptoms to receive a proper diagnosis.
    In fact, it's a homeopathic preparation, so it's likely to be useful only to people whose problem will respond to 'feeling better' about it. I might add that restless legs, of a sort, not the specific genetic condition, are a not very nice additional bonus to various neuropathies and to some deficiencies of minerals or vitamins. So even if you're not part of a family with such a history, it might be worth talking to a doctor about it.
    It has been a helpful product for me in terms of alleviating some of the symptoms associated with what could be viewed as restless leg syndrome. I've never been professionally diagnosed.
    Last edited by wegs; August 17th, 2013 at 11:05 AM.
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    Quote Originally Posted by LuciDreaming View Post
    I suffered from this dreadfully as my liver disease progressed to cirrhosis. Also the treatment for Hep C didn't help much. It used to occur during the evening when I would start to feel the need to tense up my leg muscles really hard and then release them again because they felt so irritable. There was no ignoring it. I think its a result of systemic inflammation - I don't suffer from it any more thankfully.

    Of course people will doubt its an illness and so do I - I think its a symptom of metabolic disorder and part of pre-diabetic insulin resistance.
    You could be right. My condition was never painful and until somebody pointed it out to me, I rarely gave it a second thought. However I do know that it has lessened considerably since I started daily exercise. Maybe the supplements helped, but I have to say I didn't notice any improvement until I had been on the exercise program for a couple of months.
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    Hey - Tried to quote reply and was told I couldn't - (url or forbidden words - there was no URL). So, this is a shorter post. Thanks for the welcome.
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    Quote Originally Posted by Bad Robot View Post
    Quote Originally Posted by LuciDreaming View Post
    I suffered from this dreadfully as my liver disease progressed to cirrhosis. Also the treatment for Hep C didn't help much. It used to occur during the evening when I would start to feel the need to tense up my leg muscles really hard and then release them again because they felt so irritable. There was no ignoring it. I think its a result of systemic inflammation - I don't suffer from it any more thankfully.

    Of course people will doubt its an illness and so do I - I think its a symptom of metabolic disorder and part of pre-diabetic insulin resistance.
    You could be right. My condition was never painful and until somebody pointed it out to me, I rarely gave it a second thought. However I do know that it has lessened considerably since I started daily exercise. Maybe the supplements helped, but I have to say I didn't notice any improvement until I had been on the exercise program for a couple of months.
    There is only one study, but it does show that the majority in the study did benefit from regular moderate exercise. Excessively hard exercise can make it worse, however. The study looked at walking and other moderate forms of aerobic exercise.

    Whatever it is, I'm sure you're very grateful for the reduction in symptoms.
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    Quote Originally Posted by LuciDreaming View Post
    I suffered from this dreadfully as my liver disease progressed to cirrhosis. Also the treatment for Hep C didn't help much. It used to occur during the evening when I would start to feel the need to tense up my leg muscles really hard and then release them again because they felt so irritable. There was no ignoring it. I think its a result of systemic inflammation - I don't suffer from it any more thankfully.

    Of course people will doubt its an illness and so do I - I think its a symptom of metabolic disorder and part of pre-diabetic insulin resistance.
    There is a potential link to inflammation, but the science behind what we do know makes it pretty clear that the primary cause is not inflammation, nor insulin resistance, at least in the genetic variety. Many people who have WED/RLS have had have no inflammation markers and have it long before any other health conditions. My grandmother, who rarely slept more than 2-3 hours a night from the time she was 25 until she died at 82, was never diabetic and had no inflammation issues until she was close to 70.

    That's what we call primary WED/RLS - it has a clear genetic cause. There isn't anything else kicking it off. I was a pre-teen when mine started, but I know a neurologist who only treats childhood cases of WED - and has patients as young as 1 or 2. It's hard to diagnose until they are older and can talk, but the parents identify the fussiness, the touching of the legs, the lack of sleep at night, and so on. Primary WED accounts for 30-50% of all cases.

    That leaves secondary. It's extraordinarily common with diabetes, celiac, pregnancy, MS, fibro, kidney disease, and many others. The rate for these patients usually increases to 30 percent or more - having WED, that is. When the underlying condition is treated, the WED usually disappears, but not always.

    Since there are 5 different genes implicated, it's possible that in secondary WED that inflammation may be one of the keys that kick-starts it in some cases. It could be that if you have some gene or gene combination, that you only trigger it with certain things and then when those are gone, it disappears. It could be that with another gene combination, once you trigger it, it's there forever. And, with primary, you get it no matter what and it's not triggered by anything - all of these are just possibilities, though. There is still much research to be done to detangle all of the bits of information we know and find the cohesive thread that ties it all together.
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    That's really interesting viewaskew - I didn't realise there was a genetic component to it. Nearly all sufferers of chronic liver disease complain of this varying from mild to severe and for those that manage to regain their health, its a symptom that disappears as the liver recovers. I haven't got the studies to hand but I think it was a British Liver Trust study showed this symptom to be attenuated if the insulin resistance was dealt with (IR seems to always accompany chronic liver disease).

    Have you ever considered adopting a sugar free (ketogenic) diet to see if it attenuates the symptoms?
    "And we should consider every day lost on which we have not danced at least once. And we should call every truth false which was not accompanied by at least one laugh" Nietzsche.
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    Quote Originally Posted by viewsaskew View Post
    Hey - Tried to quote reply and was told I couldn't - (url or forbidden words - there was no URL). So, this is a shorter post. Thanks for the welcome.
    I get those type messages too. But if you hit the back button then copy the link, then click on forum and paste the link back and find it you should be back and okay to post quotes. I think this happens when you leave open forum tabs over night and put your system to sleep.

    But I've never found anybody else that has had an explanation for this troublesome quark in the system. Basically you need a new screen and if you save your email notifications you can open a fresh tab and be okay again.
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    Quote Originally Posted by viewsaskew View Post
    There is only one study, but it does show that the majority in the study did benefit from regular moderate exercise. Excessively hard exercise can make it worse, however. The study looked at walking and other moderate forms of aerobic exercise.

    Whatever it is, I'm sure you're very grateful for the reduction in symptoms.
    I'm also working on my diet and cutting down on sugars and hard carbs is the main theme of it. So maybe it's every thing I'm now doing that's had a positive effect on the problem. But to tell you the truth until they started airing those commercials I never wondered or thought about it at all, and I've been exercising and changing my diet for other reasons. I just noticed that the RLS hasn't been as pronounced or as active as it was.
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    I used to use drink guarana occasionally when I was feeling sluggish and lacking energy - it's high in caffeine. It seems to affect me more strongly than even lots of strong coffee, so maybe it's not caffeine alone - but restless legs often followed. I get RLS without it too, but less often and less pronounced. Interesting about "attention"; if I take a walk around or do something to distract that attention it often doesn't return when I settle back down. It's never been debilitating but it's often irritating. And I seem to be one of those that doesn't experience pain or weird sensations - just an irresistable urge to clench my leg muscles. A little bit like the urge to stretch only it's unpleasant.
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    Quote Originally Posted by Bad Robot View Post
    Quote Originally Posted by LuciDreaming View Post
    I suffered from this dreadfully as my liver disease progressed to cirrhosis. Also the treatment for Hep C didn't help much. It used to occur during the evening when I would start to feel the need to tense up my leg muscles really hard and then release them again because they felt so irritable. There was no ignoring it. I think its a result of systemic inflammation - I don't suffer from it any more thankfully.

    Of course people will doubt its an illness and so do I - I think its a symptom of metabolic disorder and part of pre-diabetic insulin resistance.
    You could be right. My condition was never painful and until somebody pointed it out to me, I rarely gave it a second thought. However I do know that it has lessened considerably since I started daily exercise. Maybe the supplements helped, but I have to say I didn't notice any improvement until I had been on the exercise program for a couple of months.
    I believe exercise is really important. I cut out all pain meds about 8 years ago. Didn't like them, wouldn't take them 4 times a day but just when way miserable (due to a major car accident). I have used massage therapy and exercise (along with music, a sense of humor and doses of occasional performing) to keep me more level. DO I have much less pain.....well not really, but I think I have learned to channel it to other endeavors, and I do think that exercise will enhance the ability of my body to function.
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    I have cut out all sugar. I've been gluten, sugar, soy, corn, nut, dairy, egg, and more free, lol. I was having unidentified gut issues, so elimiated the top culprits. Turns out it wasn't my diet, but because I'd had surgery that changed my gut and the surgeon forgot to explain that transit times would change and I could have issues.

    But, the WED wasn't different for me. I think people who have a strong genetic link find that fewer of these things affect us compared to those who have secondary RLS/WED. That's not to say none of them do, but that we seem to get less bang for the buck when we try to change these things.
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    Quote Originally Posted by Ken Fabos View Post
    I used to use drink guarana occasionally when I was feeling sluggish and lacking energy - it's high in caffeine. It seems to affect me more strongly than even lots of strong coffee, so maybe it's not caffeine alone - but restless legs often followed. I get RLS without it too, but less often and less pronounced. Interesting about "attention"; if I take a walk around or do something to distract that attention it often doesn't return when I settle back down. It's never been debilitating but it's often irritating. And I seem to be one of those that doesn't experience pain or weird sensations - just an irresistable urge to clench my leg muscles. A little bit like the urge to stretch only it's unpleasant.
    It's fascinating how often once you distract it, it's just gone.

    The vast majority of people with it have it as you do - mildly. At least 60-70%. Another 20% or so have it 2-3 times a week and it gets more difficult to stop. Only a few % of all the people who have it suffer daily and for several hours at a time.

    That's a very good thing. And, I'm very envious!
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    I also believe that inflammation is the culprit. By eliminating inflamatory foods from my diet, I have become symptom free.

    Scientists have a variety of bio-markers that they use to detect various forms of inflammation, but not all forms. The science is still in its infancy.

    C-reactive protein is the most common, but is mostly an indicator of the type of inflammation that can lead to heart disease.

    Maybe someday, far into the future, restless legs will be a bio marker for whatever type of inflammation it is that causes the restlessness?
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    has lost interest seagypsy's Avatar
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    Quote Originally Posted by manny27 View Post
    I also believe that inflammation is the culprit. By eliminating inflamatory foods from my diet, I have become symptom free.

    Scientists have a variety of bio-markers that they use to detect various forms of inflammation, but not all forms. The science is still in its infancy.

    C-reactive protein is the most common, but is mostly an indicator of the type of inflammation that can lead to heart disease.

    Maybe someday, far into the future, restless legs will be a bio marker for whatever type of inflammation it is that causes the restlessness?
    Welcome to the forum.

    Which foods are inflammatory? I do hope you don't mean hot spicy buffalo sauce.
    Speaking badly about people after they are gone and jumping on the bash the band wagon must do very well for a low self-esteem.
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    Quote Originally Posted by manny27 View Post
    I also believe that inflammation is the culprit. By eliminating inflamatory foods from my diet, I have become symptom free.

    Scientists have a variety of bio-markers that they use to detect various forms of inflammation, but not all forms. The science is still in its infancy.

    C-reactive protein is the most common, but is mostly an indicator of the type of inflammation that can lead to heart disease.

    Maybe someday, far into the future, restless legs will be a bio marker for whatever type of inflammation it is that causes the restlessness?
    It's a possibility with secondary, but I don't think it is with primary. It may exacerbate for some, but I don't think it will be the primary cause. Of course, that's just an educated guess. There is much to learn about it, so it could be that we learn something that makes it possible.

    Of course, as you pointed out, there may be some inflammation marker associated with this that we don't yet know of or test for, but I have been tested for inflammation and my results are negative. I've actually followed an anti-inflammatory diet - at the time I did it for other reasons, but that is what it was - for over a year. I used supplements that I later learned are also used to reduce inflammation (I still take some of them). It was actually at the end of that year that I finally broke down and went to a sleep specialist - my symptoms had never been worse. And, while I don't follow that strict of a diet these days, because my husband has celiac disease and does have signs of inflammation, we eat a primarily plant-based, low in sugar, gluten-free, corn-free, healthy fats, whole foods diet. An occasional processed item pops into our cart, but I make most things - from bread to pasta sauce - and freeze or can it. While we don't eat a lot of meat, if we eat sausage, I buy organic meat and grind it myself. I grow as many veggies as I can on a deck in a high rise, too.

    I'm not sure that inflammation can count for some of the things we do know about WED/RLS, either. I was recently talking with the WED Foundation staff - as of now, they believe that inflammation is involved, but they feel the other research is as important and isn't accounted for if you pin it all in inflammation. One thing to consider is that missing out on sleep is one contributor to inflammation, as is extra weight. People with sleep disorders tend to have little sleep and have reduced leptin, which may contribute to the extra pounds. From this perspective, disorder itself may cause the inflammation, not the other way around.

    What I hope most is that they figure it out very soon. My grandmother was miserable most of her adult life, but her later years were awful. I do not want mine to be that way if at all possible. And I really want my niece, who now makes the 4th generation of sufferers in my family, to never have to go through what grandma and I have.
    Last edited by viewsaskew; August 19th, 2013 at 03:06 AM.
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    Frankly, I sometimes wish my husband had restless leg sydnrome and I am being facetious
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    Quote Originally Posted by seagypsy View Post
    Quote Originally Posted by manny27 View Post
    I also believe that inflammation is the culprit. By eliminating inflamatory foods from my diet, I have become symptom free.

    Scientists have a variety of bio-markers that they use to detect various forms of inflammation, but not all forms. The science is still in its infancy.

    C-reactive protein is the most common, but is mostly an indicator of the type of inflammation that can lead to heart disease.

    Maybe someday, far into the future, restless legs will be a bio marker for whatever type of inflammation it is that causes the restlessness?
    Welcome to the forum.

    Which foods are inflammatory? I do hope you don't mean hot spicy buffalo sauce.
    I don't know who has the science-based approach to an anti-inflammatory diet. I've read many conflicting things. There is a book out that rates food, but I don't know how the author decided to rank the foods - science, based on preliminary research, pseudo-science, of claptrap.

    Most lists have some things in common. Whole foods, plant-based, no sugar, low or no saturated fats, limit/avoid meat-based proteins and increase plant-based ones, avoid refined/processed foods, choose good fats (omega 3) and remove bad fats (including all the omega 6 ones), and add curcumin, cinnamon, ginger, and other similar spices (the science agrees with this last part - studies do confirm that these are very helpful). On some lists, it says to eat brown rice, on another list is says brown rice is very inflammatory. Some lists say all nightshades (tomatoes, peppers, potatoes) should be removed, others say that peppers are excellent.

    If you go to Amazon and put in inflammation, you will find scores of books on the topic. Same if you search on anti-inflammatory or inflammation diet in a search engine. When you go to a search engine and type in inflammation research, you don't get as many hits. The idea has been around for awhile, but a lot more needs to be learned, from what I can tell.

    So, it's 3 AM and my WED is not under control....another late night on forums :-).
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    Quote Originally Posted by seagypsy View Post
    Quote Originally Posted by manny27 View Post
    I also believe that inflammation is the culprit. By eliminating inflamatory foods from my diet, I have become symptom free.

    Scientists have a variety of bio-markers that they use to detect various forms of inflammation, but not all forms. The science is still in its infancy.

    C-reactive protein is the most common, but is mostly an indicator of the type of inflammation that can lead to heart disease.

    Maybe someday, far into the future, restless legs will be a bio marker for whatever type of inflammation it is that causes the restlessness?
    Welcome to the forum.

    Which foods are inflammatory? I do hope you don't mean hot spicy buffalo sauce.
    I found a list of inflammatory foods and have to say some of them will be vary hard to give up.

    Dr. Perricone's List of Pro-Inflammatory Foods - Oprah.com
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    I never had RLS when I lived with someone, but now I wonder how it might affect relationships. Do people sleep in separate beds because of it?
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    Quote Originally Posted by seagypsy View Post
    Quote Originally Posted by manny27 View Post
    I also believe that inflammation is the culprit. By eliminating inflamatory foods from my diet, I have become symptom free.

    Scientists have a variety of bio-markers that they use to detect various forms of inflammation, but not all forms. The science is still in its infancy.

    C-reactive protein is the most common, but is mostly an indicator of the type of inflammation that can lead to heart disease.

    Maybe someday, far into the future, restless legs will be a bio marker for whatever type of inflammation it is that causes the restlessness?
    Welcome to the forum.

    Which foods are inflammatory? I do hope you don't mean hot spicy buffalo sauce.

    seagypsy

    Unfortunately you can put the hot spicy wings at or near the top of the list.

    Other top triggers are sugar, red meat, starchy foods (potatoes, rice, pasta), alcohol, fats and dairy.

    Secondary triggers are msg, gluten, aspartame, excessive salt, nicotine and caffeine.

    It's all about experimenting. Reactions varies from person to person because we all tolerate food a little differently.

    The top triggers are consistent. If you're not sure, have a bowl of potato chips before bed, or a plate of wings. Your RLS will be intensified.

    More and more people are also finding out about food tolerances they have and didn't know about.

    I found that after I switched to an anti-inflammatory diet that I was reacting to soy (one of my replacement foods and beverages) so I had to drop that too. I now put almond milk in my cereal.

    It's not easy, but it's definitely worth the effort.
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    Ironically i tend to treat heart burn with hot sauce. it works well for me. But it has to have cayenne in it to work. I don't eat potato chips or french fries. I'll eat french fries if they are baked in the oven but I don't like fried ones. Potato chips I can only stand to eat in small quantities because the salt irritates my gums. But I can eat a teaspoon of just salt without problems. It doesn't really seem to follow any pattern for me.

    I don't fry food because I am lazy and it requires me to stand in front of the stove and actually watch the food cook and turn it. I prefer baking because I can shove it in the oven and come back in 20 minutes to eat.I don't eat red meat often because it is rather expensive these days. For me the restless leg thing seems to happen more when I have spent a long day sitting on my ass. On days where i get a lot of exercise I pass out as soon as I am at a 45 degree angle.
    Speaking badly about people after they are gone and jumping on the bash the band wagon must do very well for a low self-esteem.
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    Quote Originally Posted by Janus View Post
    I'd be laying there and I'd start getting a growing sensation in my leg that made me want to move it, it was uncomfortable and impossible to ignore.
    This reminds me of the sensation I got when my sciatica was very mild.
    Not so much a diagnosis as a possible cause to investigate.
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    I visited a male friend yesterday, and we had not had occasion to really chat in several years. During this time he has had a knee replacement and two shoulder replecements. The second knee is due to be replaced shortly. Needless to say, he has been on some pretty serious meds for a number of years now.

    He says that he has developed Restless Leg Syndrome in response to all of the surgeries and medications and will be seeing his physician to see if there may be a change of medication possible because the RLS is a serious drawback to his quality of life.

    My mother also has had RLS for most of her life. It may be a complication of the autoimmune disorder she suffers from, the CREST form of scleroderma.

    RLS is definitely REAL, based on the people I know who are dealing with it.
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    Quote Originally Posted by Bad Robot View Post
    I never had RLS when I lived with someone, but now I wonder how it might affect relationships. Do people sleep in separate beds because of it?
    Why would they? *L*
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    Why would they?

    My parents finished up getting twin beds when my father started physically thrashing about in his sleep. Mum had put up with his constant, loud, nightmare-induced groans for 50 years - but couldn't tolerate getting woken up, with bruises, from being thumped by the still-sleeping man beside her.
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    Quote Originally Posted by adelady View Post
    Why would they?

    My parents finished up getting twin beds when my father started physically thrashing about in his sleep. Mum had put up with his constant, loud, nightmare-induced groans for 50 years - but couldn't tolerate getting woken up, with bruises, from being thumped by the still-sleeping man beside her.
    That sounds a bit extreme to be called RLS, but one partner moving around a lot could be disturbing enough to prevent sleep. Personally I like the idea of seperate bedrooms. I sometimes like to watch TV when a partner might want to sleep. Besides where is it written that a couple has to sleep in the same bed to have a good relationship?
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    We sleep together when we are together.......if I slept somewhere else in the house it's cause I am utterly so mad I don't want him near me and that has happened a couple of times in 39 years.....besdies, he has sleep apnea.....which is sleep disturbing to say the least......television doesn't bother me....there are earphones for that anyhow....however, if he is major snoring...I am very guilty of kicking his ass....literally
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    Yeah, it's definitely real. I've had RLS for as long as I can remember (3 y/o). So many times when I want to sleep my legs don't, so I end up kicking them up and down until I can get them tired enough so that I can get to sleep. Sometimes this can go on for hours. I am also an insomniac...it's no wonder what with the RLS...lol. Speaking of which...I slept a couple hours last night, woke up around 1am, and have not been able to go back to sleep since. It is now 12:30pm and I'm beat!
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