Few things are more frustrating than lying in bed at night exhausted, but not being able to fall asleep because of an uncontrollable urge to move your legs. This phenomenon, known as restless legs syndrome (RLS), affects between 4% and 29% of adults in Western populations, and is a major contributor to sleep loss. (1, 2)
Pinpointing the cause of RLS has been an active research topic for years, but the condition is still not fully understood. The symptoms have been convincingly linked to impaired dopamine function in the brain, but the cause of this dysfunction is still being explored.
In this article, I’ll review four factors that could contribute to RLS, as well as steps you can take for improving your symptoms.
1. Systemic Inflammation and Immune Dysregulation
Restless legs syndrome has been associated with numerous conditions involving systemic inflammation and immune dysregulation. (3) One review paper published in 2012 investigated health conditions that were reported to cause or exacerbate RLS symptoms, and found that 95% of the 38 different health conditions that were strongly associated with RLS have an inflammation or immune component. (4) These conditions include Parkinson’s disease, multiple sclerosis, ADHD, Alzheimer’s disease, Celiac disease, Crohn’s disease, rheumatoid arthritis, sleep apnea, diabetes, and depression.
As further evidence, an elevated blood level of C-reactive protein (a marker of systemic inflammation) has been associated with increased RLS severity. (5) A small crossover trial found that a hydrocortisone infusion, which reduces systemic inflammation, reduced RLS symptoms. (6)
What to do: If your RLS is a symptom of underlying systemic inflammation or immune dysregulation, the goal should be to find and treat the root cause. As I’ve mentioned many times in the past, gut infections are often the culprit—even if you don’t have noticeable digestive symptoms—so get your gut tested.
If you already have a diagnosed inflammatory or immune condition such as those I mentioned above, the best first step you can take is to adopt a “low-inflammatory” diet and lifestyle. This means eating a nutrient-rich, low-toxin diet based on whole foods; getting enough sleep every night; prioritizing stress management; and incorporating regular movement into your day.
You can also check out the bonus chapter about autoimmune disease from my book, as well as explore other information on my site about reversing autoimmune disease, the autoimmune protocol, the role of the microbiome, and alternative therapies such as LDN.
Do you have restless legs syndrome? Find out what might be causing it, and what to do.
2. Small Intestinal Bacterial Overgrowth (SIBO) and IBS
Some of the more recent research on restless legs syndrome has focused on a connection with small intestinal bacterial overgrowth (SIBO) and IBS, which is often caused by SIBO. One study found that 69% of RLS patients also had SIBO, compared with only 28% of controls. (7) They also found that 28% of RLS patients had IBS, compared to only 4% of controls. And according to the 2012 review I mentioned in the previous section, 32% of the 38 conditions associated with RLS are also associated with SIBO. (8)
For example, one double-blind, placebo-controlled study reported that treatment with the antibiotic rifaximin—the standard treatment for SIBO—significantly improved RLS symptoms in patients with both conditions. (10) This, of course, does suggest a causal link between SIBO and RLS.
What to do: If you have both RLS and SIBO, the best option would be to find a functional medicine practitioner who has experience dealing with SIBO and get treated. That said, two steps you can try on your own are a low-FODMAP diet and probiotics. Low-FODMAP diets reduce the amount of fermentable carbohydrates that “feed” bacteria in the small intestine, and a couple studies have shown that probiotics can be as effective as antibiotics for treating SIBO. (11, 12) I’ve found the probiotics S. boulardii (a beneficial yeast), and MegaSporeBiotic to be helpful.
One important note about low-FODMAP diets, however, is that it’s generally not a good idea to stay on one indefinitely. Low-FODMAP diets eliminate sources of prebiotics, which can improve symptoms by starving pathogenic bacteria, but can also starve your beneficial bacteria. The best approach is to follow a low-FODMAP diet until symptoms subside (and your SIBO breath test is normal), and then gradually re-introduce prebiotic foods (or supplements) to support your gut microbiome.
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3. Vitamin D Deficiency
As I mentioned in the introduction, one of the most-researched theories about the cause of restless legs syndrome is impaired dopamine signaling, which has led to the conventional treatment of RLS by dopamine agonists (i.e. chemicals that can bind to and activate dopamine receptors). Unfortunately, these treatments can become less effective over time, and can even result in a worsening of symptoms.
And while replacing neurotransmitters might be an effective way to manage symptoms in the short term, the goal should be to figure out why dopamine signaling is impaired in the first place.
This is where vitamin D comes into play.
The role of vitamin D in dopamine signaling is only beginning to be investigated, but some evidence indicates that vitamin D could play an important role by increasing levels of dopamine and its metabolites in the brain, as well as protecting dopamine-associated neurons from toxins. (13)
RLS has been associated with vitamin D deficiency in several studies, and disease severity has been inversely correlated with vitamin D levels. (14, 15, 16) One study has also found that vitamin D supplementation improved the severity of RLS symptoms. (17)
What to do: If you have RLS, one of the easiest first steps you can take is to get your vitamin D levels tested. A good range to shoot for is typically between 25-50 ng/mL, but if you have an autoimmune disease or another chronic health condition, I prefer to bring vitamin D levels up to 35-60 ng/mL. One way to supplement vitamin D is cod liver oil; I recommend extra-virgin cod liver oil. You can also take a D3 supplement. And of course, you should get regular sun exposure to bring your vitamin D levels up naturally.
4. Iron Deficiency
Iron deficiency isn’t exactly a “little-known” cause of restless legs syndrome; in fact, it’s probably one of the most well-researched areas relating to RLS. Iron is required for proper dopamine signaling, but its role is much better established than that of vitamin D, and it’s pretty clear that iron deficiency in the CNS can cause RLS symptoms by impairing dopamine function. (18)
Several studies have found that low iron levels in the cerebrospinal fluid and in the brain occur more frequently in patients with RLS compared with matched controls. (19, 20) And this difference isn’t always reflected in serum ferritin levels.
Other abnormalities in iron metabolism have also been observed in RLS patients, and many conditions that increase the risk of RLS (including pregnancy and end-stage kidney disease) are known to cause iron insufficiency. (21, 22)
Further, iron supplementation significantly improves or even eliminates the symptoms of RLS in many patients. For example, RLS patients with low-normal serum ferritin experienced significant improvements in their RLS symptoms after 12 weeks of iron supplementation. (23) And oral iron was as effective for treating RLS as pramiprexole, a dopamine agonist, although the response rate for both treatments was relatively low (46.7%). (24)
The tricky thing about iron deficiency is that the solution is often not as simple as taking an iron supplement. Iron deficiency is frequently secondary to SIBO, gut infections, or other inflammatory states, which explains at least in part the association between RLS and these conditions. Iron deficiency caused by infection or inflammation is mediated primarily by the hormone hepcidin, which at high levels can decrease serum iron and reduce iron absorption from the GI tract. (25)
One cause of increased hepcidin levels is the production of IL-6, an inflammatory cytokine present in most inflammatory diseases. Another cause of increased hepcidin levels is the presence of lipopolysaccharides (LPS), which are components of gram-negative bacteria that can enter circulation as a result of SIBO or other gut infections. Thus, increased levels of circulating IL-6 or LPS can result in iron deficiency, and subsequently, RLS.
What to do: If you have RLS and iron deficiency, the first step is to identify why you’re iron deficient. If the cause is blood loss (such as from heavy menstruation in women) or dietary insufficiency (such as in vegetarian or vegan diets), increase your consumption of iron-rich foods such as liver and red meat. You can also consider an iron supplement; I recommend Proferrin ES and bovine ferritin, because they are better absorbed and better tolerated than plant-based iron supplements.
However, if the cause is SIBO or a gut infection, increasing iron intake can often make matters worse by creating an environment that promotes pathogen growth and inflammation. (26, 27, 28) For this reason, it’s best to address the gut before (or at least concurrently with) adding iron supplements.
As you can see, restless legs syndrome is complex, and several factors could come into play when trying to figure out the cause. As with many other health conditions, RLS is best seen as a symptom which signals that something else is amiss, and it’s necessary to dig deeper to find out the root cause, and how to treat it.
If you suffer from restless legs syndrome, I hope this article helped clarify what might be causing it.
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I really need your guys advice because i don’t know what to do. I have had a sudden onset of RLS and i don’t why. I haven’t been able to sleep for 3 days and I am in college and need the sleep really badly. I am a 20 yo female, fairly active ( i exercise for an hour every day in the gym) and as far as I know very healthy. This has also accompanied an onset of sudden bad GERD symptoms that have really flared up lately. I don’t know if this is related. I went out and bought some Calcium, Vitamin D, and B12 supplements today and i hope they work. I am desperate for a remedy because I need to be functioning, especially since I have a big Test coming up here soon. I was up at 4 this morning pacing and crying because i couldn’t get comfortable and i need sleep so badly. Please help
First of all, if you are not already, I’d add magnesium and vitamin K2 (MK-7 form) to the regimen you just started. The magnesium may be the primary solution to your problem – you may not be getting enough in your diet and you’re losing magnesium with your daily workouts.
Most conventionally-grown food today is very low in magnesium because the soils are becoming depleted. Conventional farming practices do nothing to replenish the magnesium in the soil where our food crops are grown.
If you eat sugar, I would suggest cutting way back on that as it will deplete your magnesium, especially if you binge on sugar [or sweets]. Your body needs magnesium to process the sugar into energy.
For magnesium supplementation, I would suggest both a topical form [like magnesium chloride hexahydrate] that is readily absorbed through the skin, and an oral form such magnesium glycinate, magnesium taurate or magnesium malate. Amino acid chelated magnesium is very well-tolerated in the gut and also well-absorbed. And you body uses the aminos too.
Using both topical and oral will help to compensate for any absorption issues in the gut. And this will help ensure an adequate amount gets into your body.
People like to say, you are what you eat. But that’s not true. You are what you absorb. If you eat it but don’t absorb it, it never becomes part of you and can’t help in healing.
Other forms of magnesium such as magnesium citrate can irritate the bowels leading to loose stools and diarrhea. A common form, magnesium oxide is so poorly absorbed that you will only get 10 mg from a 250 mg tablet! Don’t waste your money on this one.
These may or may not help your RLS. They have worked for a lot of people and certainly won’t harm you, so it is a good place to start.
You might want to reconsider the calcium you just started taking, unless you don’t think you are getting enough from your diet. Too much calcium can upset the mineral balance in your body and cause magnesium deficiency symptoms.
The K2 works with vitamin D3 to help your body direct the calcium and magnesium to the proper tissues in the body. Without it, you are at risk for soft tissue calcifications in the brain, aorta and other soft tissues in the body.
Michael, thanks for the explanation and insight on the vitamins and minerals to take. My question is are or is there a particular brand for magnesium/iron/ vitamin d to purchase? I just purchased nature’s made brand. Thank you so much
I have had great success by alkalising my system. Use PH test paper and test urine throughout the day. Drink bicarb water on an empty stomahe late at night when the body temp drops and rls starts ….. has been working a treat for me
Hi there, not sure if you got relief from supplementation, but it’d recommend looking at your caffeine intake. This has been very strongly correlated to RLS symptoms for me. No tea, soda, coffee (even decaf) allows me to have a good night’s sleep.
There is a doctor who specializes in treating the cause (whatever yours happens to be) of RLS in Southern California. I’ve seen him once so far and I am just starting treatment but I am hopeful. His name is Dr Mark Buchfuher in Downey, CA. Just wanted to let everyone know.
Kate, was Dr. Buchfuher able to help you? I’m in Los Angeles and would happily go to Downey if I thought it would help. Please let us know!
Hi to everyone,
I am writing as someone who had RLS as a child and later during my pregnancy. The RLS has remained with me. My symptoms are intense and I cannot sleep unless I take Mirapex. I worked with a naturopathic doctor to find alternative approaches during my pregnancy. Basically, the conclusion I have reached is that medication is the only solution. If you have severe RLS, you will send thank you cards to the pharmaceutical companies. If your symptoms are minor or moderate then iron and other treatments may be appropriate. RLS is a neurological problem and therefore you should see a neurologist (it is also inherited). I honestly don’t want people to suffer needlessly when there are products available to improve your quality of life. Best.
Thanks for your post, Anna. Different strokes for different folks. I avoid medication whenever possible — for extreme situations such as emergencies or when natural alternatives are not available.
My RLS was terrible, and I have been able so far to eliminate it by staying hydrated, taking an iron supplement, and avoiding certain foods that seem to bring it on such as carbonated beverages and foods with high fructose corn syrup or artificial sweeteners. No idea why but it works.
My daughter has this very badly. I’m going to cut out the soda and keep giving her flintstone vitamins. She also has gut issues since birth. She can’t drink milk or she will get extremely constipated. I feel so bad for my baby.
THANK YOU for your RLS comment, it immediately resonated with me! Your story sounds like my story, I too had not been able to sleep through the night until MIRAPEX! RLS has been a way of life since I was 6 years old. Therefore, I am ever so GRATEFUL to the pharmaceutical companies for MIRAPEX, and for a great night’s sleep. -Debbie
Sounds like the Big Pharma shills are out and about in these parts.
You don’t have to do that! If this is helping peoples lives then butt out! Who are you to say what they should or shouldn’t do or take. I’m thankful there’s people writing solutions that has helped them. How do you know they haven’t tried anything else? You don’t.
I completely agree. I have changed supplements many time and have changed meds as well. Severe RLS is a DEMON! It is hell!
My dad suffers from it as well. He is a type 1 diabetic which doesn’t make it easier, but we all have our ways to deal with diseases. I WISH all it took was a magnesium supplement! 🙂
I just joined and couldn’t agree more. I am on oxycodone, mirapex and oxyneo and am still not getting full relief. I am 71 and it has been an uphill battle, but have tried everything through the years. People who have simple solutions do not have severe rls.
“People who have simple solutions do not have severe rls.”
I agree. And to add to that, it seems to me that due to the varying degrees and symptoms that I’ve read about, there may be more than a single kind of RLS and well as more than a single cause. For me it equates to an irresistible urge to stretch my lower legs, always in the evening, and worse when I eat low carb (which makes me feel better in every other single way). For others, it’s a crawly sensation or uncontrollable movement, etc.
I had severe RLS, every night for hours.
Dumping gluten and going low carb pretty much solved it. It also reversed my years of IBS, hiatus hernia, acid reflux, palpitations, high blood pressure, and eventually also the Candida and fungal issues I had been trying unsuccessfully to eradicate for well over 30 years.
Whilst I can eat wheatgerm – the part of the grain that contains most of the nutrition and is removed during milling to extend shelf life, and I can now cope with a little ‘slow-rise bread (proofed overnight in the fridge for at least 10 hours and kept scrupulously clean of loose flour – slow rising not only predigests the gluten, but also makes the dough far more nutritious), anything else containing wheat is a big no-no. It robs the body of far more than it gives, and does not even give the body the nutrients it needs to process it with.
Most modern staples, wheat, pasteurised dairy, sugar, etc., are all devoid of essential nutrients. Empty and incomplete calories do not make healthy bodies…..
I’ve had RLS for about 30 years. What makes it worse: late nights, poor sleep, summertime, sitting or inactivity. Mostly legs and buttocks, but can creep up the back too. At times I have taken medications for it when I can’t stand it anymore. (low dose Parkinsons drug – can’t remember the name). I had tried Calcium-Magnesium and Magnesium on it’s own in the past with no or little success. Dcotors could offer me no other help.
I thought I ate healthy foods and a lot of vegetarian fare. (But that meant high carbs, beans). I have also suffered from IBS for the same length of time. Last 8 years I take medication for secondary hypothryroidism.
Two months ago I switched my diet to Primal approaching Keto as a desperate measure to get the IBS under control. Surprise, surprise when I was without pain, gas, and bloating almost immediately, continuing to this day. Now my goal is to work on the RLS. I’m using cronometer.com to enter my foods into and find that I’m consistently low in B vitamins and also Potassium. I’m exploring their relationship with RLS now.
Hi there I’ve just started taking drug called ROPINIROLE both 0.5mg and 2mg
Dopamine agonist. Oh beware! Side effects are hideous and down the road a thing called Augmentation. I certainly realize how horrible this is. I would be in the same boat – except for reading one sentence at Johns Hopkins website “Since the 1950s, it has been known that iron therapy, even without the presence of anemia has benefits for RLS symptoms.” Read more on their website… http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/treatment.html
I just wanted to express my thanks for your comments, Mr. Carlson.
I am sure you are on the right track. Whilst wheat/gluten used to give me raging restless legs when I ate it, dumping it pretty much stopped it.
Weirdly though, I can eat wheatgerm without any issues, plus some ‘slow-rise’ bread (proofed for at least 10 hours in the fridge in a scrupulously clean bowl free of any loose flour), and that is because both the wheatgerm and SR bread are rich in B vitamins and potassium. Slow rising generates as much as 50% more nutrients, especially Bs.
I now eat a VERY plant-heavy diet which is rich in potassium, and add wheatgerm and nutritional yeast flakes to my food most days. RLS is now consigned to history…..
Am reluctant to post without reading all the comments, which I hope to do. At the risk of being repetitive or having missed something relevant to the hydration and RLS, I will go ahead.
I have been experiencing RLS for decades with long periods of no symptoms– then it’s back.
Maybe it is my imagination,
but I am prone to RLS when dehydrated. The more water I drink, the less I experience the symptoms. And if I drink what I should–8 glasses or more, they virtually disappear.
There may be other factors of which I am unaware, but it has seemed that making this conscious change to drink more water reduces the symptoms with 24-48 hours.
I would love to find some evidence (research/other persons’ experiences) for this beyond my own experience.
Hi. I would like to share my experience with RLS or identical condition to it. I will call it RLS.
I developed RLS in early pregnancy roughly 18 months ago. RLS was day and night when ever I would sit or lay down and try to relax. I had serious need to stretch and move my legs constantly. Then as time passed I started to develop pain in my knees, hips, lover back, ribs and so one- the pain was really dull and chronic. I could not understand if the pain is in muscle or bones. Then recently I started to have a terrible pain in my right upper arm and shoulder- I was not able to sleep or carry my baby anymore. The RLS was through out all the time since I got pregnant.
Then I remembered that long ago my mom had some issues with gold and she removed all the jewelry from her body and never wore it again. That night I took off all my jewelry and other metals touching my body to see what would happen.
I was shocked, I could feel as if there was little electric impulses rushing around my body. The pain in my right arm started to improve immediately (I had wedding ring on this arm). On next day my overall wellbeing improved a lot. It’s been a week without metal in my life and RLS like symptoms and all the body pain have disappeared! I feel great now!
I have made conclusion that Metal Hypersensitivity have caused my body to inflame and acted as a trigger to cause really bad RLS and pain!
I hope this helps someone to find their trigger
I just started getting Rls in the last several weeks. The odd thing is it coincides with starting a Paleo style diet. I started the diet about 8 weeks ago. The rls and calf cramps began about 3 weeks ago. I never had any problems before. I am actively during the day at work and have no underlying health issues that I know of.
Most docs know little about this. Best info on the internet is here… http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/treatment.html
It is indeed probably a cascade of inflammation – somewhere – vascular, gut, alcohol, obesity, etc. Somewhere, somehow you upped the ante and went over the cliff! That said – you can manage the symptoms – I did it with Iron supplements (get your iron level checked before supplementing) Ferritin below 50 and % saturation below 25 – you’re a good candidate for iron sups. This is the version you want ferrous bis-glycinate chelate. More info, http://www.rlcure.com/
This article is really helpful. I will get my serum iron and vitamin d levels checked.
Also, if this is of any help to anyone: I can directly attribute my RLS to consuming carbonated beverages (water or soda), drinking water from a soda fountain, water from a filter/water softener, and some non-carbonated beverages like “Smart Water” and “Vitamin Water”. Mild episodes can be precipitated by chewing gum, chocolate bars with PGPR, and a few other items I don’t remember because I don’t eat any junk food at all anymore…
I started treating my RLS with iron supplements just out of desperation. It felt like I needed a mineral. Tried Calcium/Magnesium supplements first… but these actually trigger RLS. I had an iron supplement for my husband, and tried that. It worked! I take just a half pill with a large glass of water… so I have been doing that for years, but now I’m lazy and just take a full pill because I’m usually too exhausted to split it and just want to sleep.
Last night I had a pretty bad one (water from a soda fountain, yeah I’m always hoping it won’t happen this time) and an iron pill didn’t do the trick. Maybe I needed two. But I hear it irritates the stomach lining… Anyway, once the water I had with the supplement reached my bladder– I could literally feel it moving to my bladder– the RLS symptoms were done and I could finally sleep. It took about 2 hours :(. I made a mental note to go online to see what the heck was going on…
Lastly… RLS is not confined to my legs. A severe episode will also affect my arms, from elbows or biceps to hands or shoulders, even triceps to hands (if it’s really bad), and at those times I experience dizziness, an elevated heart rate and difficulty relaxing my mind.
I have never heard anyone link diet to RLS. Maybe my Iron (and Vitamin D?) levels are borderline and easy to tip over from foods that deplete these from my system…
Oh, regarding the reference to autoimmune disorders… very interesting. I have Celiac Disease and Graves’ Disease (Graves’ was brought under control by going on a gluten free diet). I have been on a strict gluten and grain free diet for about 16 years, but have experienced RLS for most of my life. It did seem to get worse when I became less active. I take no medications beyond an occasional ibuprofen.
I have developed severe sciatica, thus inflammation. The RLS at night has become unbearable. Spine specialist has put me on high doses of ibuprofen and Tylenol. Giving up bread would be hard fir me as I grind my own hard red wheat and make bread. But I’ll do anything to get relief from this torment. Wondering about Almond and Cicomut milk instead of cow’s milk. I could easily make that switch. Thanks for the info. Gives me hope. Rosie Johnston
You can still make your own bread. Gluten free bread will make a difference.
Rosie, I would fire your doctor.
The high doses of ibuprofen and tylenol block the production of prostaglandins, which are chemicals made by the body to help the healing of broken bones! The drugs are just making things worse!
And vitamin D could be one of the things that will help you.
As for almond or coconut milk, I’d avoid them as well. Both contain carrageenan, which is hard on the gut.
Chris or staff, I have had IBS for years and I read the part about SIBO in your article. I need to be tested for this SO badly! I have restless leg and back pain. Please please tell me where I can be tested for this. I am from Alabama. Can u connect me with someone who can help me get tested?
Hey Tanya, any gastroenterologist can do this. I went ahead and took the SIBO test and it came back negative. Oddly enough getting on the low-fodmap diet has still made a world of difference. I would highly recommend getting on the low-fodmap diet because it really has worked miracles for me. The question is: Are you willing to give up milk and bread?
Yes I guess any gastroenterologist could do this, but no one has! Why not?
I discovered I was anaemic mid last year. After a couple of iron infusions and my iron levels were back to normal, my RLS basically disappeared : )
I had horrid pins and electrical shocks on my legs. Tried to find a cure for two years. I was anemic, took iron supplement for a year 325mg….helped tiny bit with legs but hugly with depression. Then i figured out i didnt eat enough dairy. I packed calcium+magnesium+vit D3 +vit K and after two solid months all symptoms disappeared.
When i had the symptoms I thought i was going crazy, wanted to cry my eyes, doctors didnt understand what i was talking about.
Amazing that deficiency in vitamins, minerals, aminoacids can have such huge effect but i now know its so real and true!!
Give it a go and I hope it will help you too xx
Great article. I get Restless arms and legs after taking any supplements and certain foods, Mainly sweet potato and herbs and spices. This started after I took a supplement to support my throyid. I could tolerate foods and supplements fine before this. I suffer with chronic fatigue syndrome and could really do with taking supplements to support my system, namely mag, vit c etc. Any ideas why a reaction to one supplement now stops me from reacting to all others with rls?
I’ve been on a low-fodmap diet for about a month and this resolved my rls almost completely. In trying to get to the bottom of this I was able to convince my gastro to prescribe Xifaxan AND Neomycin together even after a negative breath test. Even on these, if I eat any fodmaps my rls is noticeable that evening. I’m going to begin taking the Prescript-assist Probiotic as soon as I’m done with the antibiotics because now I’m concerned about any damage done to the healthy bacteria. I’m also looking into getting tested for leaky gut. Am I on the right track??
I have been troubled by RLS for a while, but the severity of the symptoms increased considerably some months ago. Restless Body Syndrome would seem a more appropriate name, as the symptoms began to resemble those of Parkinson’s. However, a blood test showed a very low vitamin D and calcium count, and my doctor recommended Unikalk ‘Forte’ (to give it its Danish name) before trying anthing else, and the results after nearly three months have been quite remarkable. I’m rising 76, and, though I’m a retired profession classical musician and my concert giving activities are much reduced now, I still practice 3 hours each day. Now I can do this without fear of losing control of my hands. Long may it last! I find this site a great help and inspiration. It is great to know that one is not alone.
I have a both CMT and RLS, CMT is not considered an autoimmune disease, should I still try the fod map diet?
Absolutely. The effects are remarkable and you have nothing to lose. Honestly for me it’s worked wonders but at the same time opened a new set of questions regarding the relation between diet and this nightmare. It’s working wonders so I’m not stopping the diet but at the same time, I’m looking at what’s going on in my gut. Please let me know how it goes.
Hi Chris, could you please, *please* recommend an iron supplement from a bovine source or something similar like you mentioned in your article?
Hi Kate – the standard treatment is 325 mg ferrous sulphate twice a day. It’s probably constipating and has other side effects. I have found Ferrous Bisglycinate Chelate made by this company (many retail brands) http://www.albionferrochel.com/ I had RLS as bad as ever and since this discovery it has almost gone away. Daily dose is now every other day. Original Ferritin Level 49, now 105. I also found a study that ascribed a role to this probiotic (LP299V) as helping move iron across the blood brain barrier. http://probi.se/sites/all/files/attachment_files/hoppe_et_al._2015._probiotic_strain_lactobacillus_plantarum_299v_increases_iron.pdf
Much more here http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/treatment.html
I have recovered from pancreatic cancer after the Whipples operation but since then I have had unbearable RLS. I take SIFROL for it, but it is so bad now, that I am unable to sleep. Please can someone help….I have an idea that because I had organs removed that I need supplements to help. Magnesium perhaps? I have to take Creon three times a day to help digest my food.
I recommend magnesium oil by Ancient Minerals. It is FANTASTIC. all you have to do is rub a small amount of it on your legs (behind the knee works best) for roughly 5 minutes. Then let it stay there for about 20 minutes before washing it off. Do this twice a day if you can. You can buy it online easily but I would definitely go to a local health food store because I know what it’s like with RLS, we all want a solution NOW so we can sleep tonight. My email is [email protected]
Let me know how it goes for you
Hello, after having a total knee replacement I have had severe restless legs I have tryed sooo many drugs even an iron infusion yet the only thing I have found to stop it in its tracks for me is 5mg of Oxycodone I’ve been on this for about 8 years now. Good luck I know the hell your going thru.
My severe RLS was about 6 weeks in i switched from norco to tramadol. The rls was immediate even though the tramadol was onlt for one night. Ferritan keeps going down to 30′ s or so. I have IBD and am Hypo thyroid. I take rapinerole wcich helps but not enough. I am exhausted. Help….what next?
Seems like your Ferritin is painfully low. This is the supplement I used to eliminate my RLS symptoms. Daily for awhile – now just 1 x week. http://www.albionferrochel.com/
You might want to join this group – it’s in the UK, but they’re extremely knowledgeable and helpful. https://healthunlocked.com/rlsuk
I’ve been vaporizing cannabis every night for the past week. Wow it absolutely works. Went to my doctor to talk about medical cannabis (where I live it was recently legalised), and he said although it’s been legalised, the actual product won’t be available until december 2017. So I’ll have to make ends meet with regular, more expensive street stuff for now. For anyone reading this who is interested in trying it out, making edibles is much better for RLS. Vaporizing brings instant relief but it only lasts 5-6 hours. Edibles give 8-10 hours of relief if you make it the right way.
Also, I have been taking cod liver oil for about a week now to increase vitamin a and d. I have noticed that I can stay in the sun longer without getting burnt. I don’t know if this will help my RLS but I’ve just started taking 10 minute walks outside every afternoon, just to soak up some free vitamin d. I usually put on a tiny bit of sunscreen about 20 mins beforehand just to be safe.
Good luck to all
If you are using sunscreen for a 10 min walk then you probably aren’t getting any vitamin D form your walk.
LOL, just what I was thinking. Fearmongering that ANY amount of sunlight is BAD is still steeped in most people’s consciousness. The guidelines (as I recall) is to get your dose of sunlight on unprotected skin, THEN apply sunscreen if continuing to be in sun.
Hi Linda, my underactive thyroid is helped greatly by tyrosine. The naturopath tells me I need iodine. Haven’t tried that for long. I believe my RLS is triggered by low body temp and so trying to fix the thyroid. The worse my RLS the lower my temp. Last night was bad and I had to put the electric blanket on even tho I had 5 blankets! It’s summer and 28 degrees last night.
so far nobody has viewed the cause of this syndrome from this angle: chronic masturbation. that causes it hugely than anything else. chronic masturbation depletes dopamine and it’s already been stated low dopamine levels trigger RLS. why hasn’t anyone thought of that.???!!! Interestingly those suffering from effects of chronic masturbation are directed to Cod liver oil for vitamin D. The same case with victims of RLS.. I’m not a doctor. I’m just applying commonsense. Indeed of late I’ve come to realise doctors hardly think outside the box.
Send me links to evidence of that and I’ll stop masturbating today
Here is my experience: I’ve had RLS for years, and during my first pregnancy it almost killed me because I couldn’t sleep for days.
I’m pregnant again and it came back. I’ve been doing everything, but it’s been just 4 nights that I’ve been sleeping with now RL anymore 🙂 I just stopped eating and specially drinking about 4 hours before I go to bed, and IT’S GONE! 🙂
I can’t believe the solution was so simple and I was suffering for that many years.
RLS is such a miserable condition and causes suffering that people without this condition cannot begin to understand. Appreciate the great insights from many people. It’s clear from comments that deficiencies of many different nutrients can cause RLS symptoms, so there is no “one size fits all” treatment, although it seems there are several fairly common triggers (low iron, low folate, low minerals, etc) to troubleshoot first.
I have had RLS symptoms as long as I can remember. As a youngster, when I would sleepover with a school friend, the complaint was always “why are you wiggling your legs so much, can you lay still? ”
I have never been diagnosed as low iron.
In my case, in spite of having develped SIBO / IBS-C in the last year (long story I won’t go into here), my trigger is most definitely low folate levels.
I am MTHFR (C677T heterozygous).so in addition to making sure to eat cooked greens regularly (Trader Joes Palak Paneer with chili seasoning is a staple in my freezer), I have experimented with supplements that contain low doses (400 mcg) of Quatrefolic, Metafolin and/or calcium folinate. I don’t even have to take these supplements every day, only about 4 days out of 7. I can always tell if my folate levels have dropped because the RLS symptoms start coming back.
Each person has to experiment to find the specific nutritional deficiencies that relieve their symptoms. Here’s hoping you all have success.
Forgot to mention: I have always been puzzled that after a miserable night of tossing and turning, with little sleep, many times (but not always) the restlessness would diminish or stop around 5 am and I could finally fall asleep. However, since I get up at 6 am to go to work, I couldn’t sleep long enough to make up for a night of insomnia.
Perhaps related somehow to circadian rhythm?
I have wondered about the Circadian rhythm connection. My RLS comes on even if I am getting heavy eyelids. I have had severe RLS for decades. I had a radiofrequency ablation test for a recent car accident and the RLS seems to have (at least temporarily) vanished. Now I have been asking people if they have had cervical spine injuries or whiplash.
Hi I had RLS for quite a few months. It turned out I was low on iron. I also started taking magnesium supplements and iron tablets. Magnesium also helps in the sleep department. Have never slept very well. So the combination of iron and magnesium have improved my situation to great effect! Thank God! Also epsom salts can really help with exema so I believe. Hope this all helps. This service is so valuable. Thankyou.
Have had RLS constantly since about 1986 and I find it is worse when the borometer is dropping and can completely disappear when it’s rising. Many bacteria, yeasts etc increase when body temp lowers and some organisms can produce enzymes that lower body temp. RLS is worse for me between 11 pm and 3 am. Yes Iron helps, although supplements bring on my migrains, yes anti inflamitory anything helps, if I check my body temp there is an exact correlation between lowering temp and severity of RLS. I am now researching body PH and Total alkalinity and find Dr Sircus very interesting. One study I read spoke about enzymes found to be stripping protein from the most used muscles…. I can now get RLS anywhere in my body and especially after gardening or hard work. If PH is out, Dr Sircus has found that the body robs minerals etc from muscles when at rest….. I must add that whenever I have been on antibiotics, my RLS disappears.
I hope you find this helpful coming from 20 years dealing with RLS;
I have had RLS since my late teen years. Also ear infections and eczema very badly when I was little. I was 40 when a doctor said I had low iron. Told me to take iron but didn’t make a big deal. 5 years later another doctor said “….and you are still anemic.” STILL? Now I take 75mg of iron to get to ferritin of 32. Still working on the cause.
It wasn’t until I was 40 that RSL was taken seriously and studies done. I found a full page ad in my local paper for study subjects for RLS symptoms. My reaction, ‘OMG, it is real but doctors have been dismissed it saying I was just a stressed young person.’ I really gave up until I came upon the doctor that knew about RLS and didn’t look at me like I wanted sympathy or I was making it up.
I have been taking Miripex (generic form) for almost 10 years. I also had very bad swelling in my ankles ( I was told I had arthritis ) NOT. So you listen to your doctor ( they are not always correct ) I was given two serious drugs for the swelling. They did not help and the doctor would not listen to me when I told her that I have not other symptoms other than swelling. I stopped the meds and stopped seeing this doctor.
Last year I finally I had a 100 panel reactive test done. Food/drug additives (food coloring, Sodium Benzoate etc…) and certain foods allergies. To my biggest surprise, white potato was the highest level toxin for me.
If I am strong willed and stay away from all 20 items that were red flags as reactive, my RLS is gone. BUT, I mean staying away from it all. This includes all the hidden additives in meds, foods, drinks. Two months ago I had Smoked Salmon (on my list of ‘stay away from’ ) My husband was perfectly fine. I had the worse gut/intestinal pain ever in my life which lasted over a month. Everyday I hoped to get better. There was no miracle drug or herb to make me feel better. Only time and help from Sena tea. If I had only followed my list.
My advise from my 30 year experience, get tested for possible irritants, chemical and natural and do your best to stay away from them….and yes it is not easy. Corn for example on the list? Corn is in 90% of our food in one form or another. It is now listed as the 15th allergen in the US. Artificial food coloring ( i have witnessed this in children and turns them in to little monsters, it is not the sugar). In my case RLS. Sodium Benzoate is in almost every liquid cold medicine and soda. I also can not take any night time meds ( Tylenol PM ) not only do I have RLS in my legs but also my arms and torso. Very opposite reaction to what it is suppose to do. I had taken this three times over two years to make sure. They were terrible nights and will never take PM meds again.
To sum this up, in my experience, I believe RLS is worsened by what I put in my body. My ear infections and eczema have been gone for decades to be replaced by ankle swelling, sore muscles and RLS. These three seem to correlate to the chemical additives and foods that I consume but I should stay away from.
So parents, try to find a doctor that will listen to you about your child so they do not have to go on a 50 year hunt for good health.
I can second this 100%
I’ll never forget the first time I tried Neo-Citron… worst night of RLS my life. Tried it again a couple months later – same thing.
More recently, I had giving into my cravings, and had gotten into a bag of Twizzlers before bed. RLS was on full force. I had a feeling it was the Twizzlers, so a couple weeks later I did it again (self experiment / torture lol) and same thing.
I have now been able to pinpoint that anything with it seems red dyes specifically has a very strong effect on triggering the RLS.
I hope this can help some people pinpoint what causes their RLS as well!!
ANY sort of antihistamine (which is one of the drugs in NeoCitran) will worsen RLS, because they constrict blood vessels.