After hearing a lot of good comments for low oxalate diet, I decided to give it a try. I figured it was worth trying since I'm normally a vegetarian and I eat some of the worst offenders of the low oxalate diet in great quantities (a lot of almonds & peanuts as well as cocoa in my morning smoothie).
I was on a strict low oxalate diet for 2 weeks. My meals were essentially made up of: morning greek yogurt smoothy with a banana or blueberries, 2 spoonful of flax seeds and 3 spoonful of hemp seeds. Lunch & supper of 3 eggs or a chicken breast with cucumbers, cauliflower and zucchinis cooked either in coconut (high-temp) or olive oil (low-temp). Sometimes fish. No added sugars, no foods with additives. A very bland and low caloric diet.
Result: absolutely no effect on my RLS. I even had two of my worst nights in a year with RLS in my back and one of my arms after eating organic free range chicken tournedos with zucchinis. And that's with 5 mg of Methadone and 225 mg of Pregabalin.
I am glad that some diets work for some of us. Finding relief of RLS is worth trying everything. It's good that we share information about what works for ourselves.
However, it’s important to say that this little test of mine proves nothing. Same goes for another individual experience with a diet. I'm saying this because I am very tired of reading claims about the dietary "cause" of RLS. Apart from general good eating habits pertaining to sleep (not eating too much too late in the day, no added sugars too late in the day, no alcohol) and for Iron supplementation, there is absolutely no evidence of a causality between diets and RLS.
Some of us might have secondary RLS due to an allergy to certain foods. However, as someone suffering primary RLS, which is genetic, runs in the family, and has no correlation with diet, it's just very tiring to hear again and again those same narratives of someone who found the cause of RLS through his or her individual experience with a diet.
Again, to be clear, I appreciate that we try to help each other out by suggesting we try a specific diet. I’m just very tired of reading “RLS is caused by this and this”. It’s not. If it was, everybody who tried low oxalate diet or gluten free or dairy free or FODMAP, or paleo, or keto, or whatever, would have eliminated his or her RLS. It’s misguiding to say so and it’s very frustrating to read this kind of statement when you tried every possible diet to no avail.
Again, keep up the suggestions! But please just take care about the way you frame things.
Thanks,
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Yes, as mentioned in passing in the post, during that whole period I took 5 mg of Methadone, 225 mg of Pregabalin. Also 2 Iron+ Bisglycinate 28mg capsules every other day.
I gather your RLS is not under control. You might want to increase your pregabalin dose. It is equivalent to 1350 mg of gabapentin and according to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." I assume since you mention you take iron that you had your ferritin checked.
Thanks, I tried that avenue and it didn't work out. The issue is that I'm in my early 30s and working in academia. So I need my mind sharp enough to work. I maxed out at 400 mg of Pregabalin, I think that was 4 years ago. The side effect were too intense for little to no benefit on my symptoms and sleep quality compared to 200-250mg. Same goes for Methadone, I went up to 12mg and the nausea and sleepiness were too much with little to no benefit compared to 5mg. I also tried a combination of high doses on both meds for 2 months with 12mg Methadone + 350mg Pregabalin. Still no significant benefit compared to the side effects.
Also, in my 5 years of trying different dosage I noticed that no amount of med has proven enough to prevent the very bad RLS bouts that seem to come randomly in cycles.
Finally, I decided to lower both meds to the present levels since I'm able to get enough sleep to function without too much side effects. On a good night, I'll fall asleep around 9-10:30 after a mild RLS outburst, wake 1 or 2 times during the night to stretch and wake around 7 to 8. From what I wrote in my sleep journal, I probably get from 7 to 9 hours of sleep excluding the odd RLS bouts.
I think its it's true that when RLS decides it wants to be heard there is no stopping it at times. It's to bad that the opiate you take causes you the sleepies. For alot of us it has more of an "upper" effect which is great if you are trying something for daytime RLS but not so much at night.
Yes, I concur with your general theme, I have long since confirmed that diet generally and specifically consumption of Sugar, Caffeine and Alcohol (or lack there of) makes not the slightest difference to my, like you, Primary inherited RLS. I well remember my Mother rocking backwards and forwards in her chair complaining of something she called " the fidgets" little then did I know of what lay in store
I agree with you. Diet doesn't help everyone. I spent 12 months on strict paleo anti inflammatory diet, 9 months on low fomaps and 6 months on a vegan diet.Made no difference at all.
If it doesn't work within a few weeks, it's not going to work.
I tried EVERYTHING. Every supplement. Every gadget, acupuncture, osteopathy, brain retraining exercises.
At last I now have relief on low dose Buprenorphine.
Did you ever get your your insomnia under control? If I remember correctly buprenorphine was still contributing to that issue. Or, I could have you completely confused with someone else.
I have opioid 'alertness' not actually insomnia. I'm very happy to say, in the hope that someone else may be helped too, that I've started on gabapentin to calm my brain and enable me to sleep better. I've even been dreaming for the last three weeks since starting on it. That was unknown for the previous two years when I was borderline awake or actually awake, for much of the night. I'm on buprenorphine patches which control my RL about 85-100%.
Guillaume, I hear you and I agree with you. I also want to say I am sorry that you already have to revert to such strong meds at such a young age. I can only hope that give time new insights and new meds will come. If we only knew what causes brain iron deficiency in people with rls...
I hope you ur current cocktail will continue to work well enough until then.
I started getting really annoyed with this trend after listening to "Maintenance phase" Podcast. They take a critical look at a lot of nutrition/diet fads that claim to cure everything and anything, from weight lost to cancer. There's a clear pattern. Most diets are eventually touted at THE key to solving everything in your life. And if it doesn't work, it's because of you, because you weren't strict enough: your vegetables weren't organic, or were not from a local farmer, or because your beef was not grass fed and because you ate a spoonful of chocolate ice cream that one time three months ago. It's never the fault of the diet, it's always your fault.
Considering that RLS is a lifelong disease on which I have no control (after trying every diet and every damn supplement, treatment and exercise and all that while being a young healthy person who makes all his meals, exercises, took no drugs/alcohol before RLS and has been practicing mindfulness meditation for years), thinking of RLS as my fault is really really bad for my mental health. It assumes that if only I found the thing that I'm doing wrong, I'd be cured.
Accepting that RLS is a serious lifelong disease, same as Parkinson, multiple-sclerosis and epilepsy is the only way forward for me. It's part of my life. I have to build my life around it, there's no other way. That doesn't mean I'm not consistently trying new fads. After all, I just admitted that I did. It's very hard to admit that you don't control your disease. But, it also means it's not your fault. And that's a tremendous balm on my restless legs.
Man you triggered my sore spot. Totally agree with the percieved notion that the patient is at fault, not the treatment. I have that same issue with psychotherapy and mental health. It's a terrible stigma. Same with sleep therapy advice. They all imply you have been given the holy grail of answers and anything less than success is patient failure.Rant over.
I agree with you. I have MS and severe RLS and get so sick of people telling me both diseases can be cured by diet. I eat healthily and I have tried all the diets strictly to prove to myself that they make no difference. There will be some people who have a poor gut microbiome and that is why drastically changing diet may help their RLS. But otherwise, diet and supplements will make no difference. I actually believe RLS is triggered/ caused in several ways. Certainly low brain iron is the most common. Spinal scarring or damage is another.
We need so much more money spent on research.
In the 1970s and 80s there were no treatments at all for MS. Then money was raised and spent on research and there are now lots of highly effective treatments.
And it's a big thank you from me too! Well said and I absolutely agree with everything you say. My RLS is also inherited. Even if I did cartwheels up and down my road 10 times a day, my RLS wouldn't be controlled with anything other than medication.
I understand your frustration when something which works for one person or even many people is presented as “the” answer. One very obvious aspect of RLS is that we know many things can affect it (iron levels, dopamine agonists, alpha2delta ligands, opiates, cannabis, diet, but these have wildly varying effects depending on the person so it’s clear we are still tinkering around the edges with crude mechanisms which aren’t hitting the real root cause. Until we understand the full pathophysiology it’s important we keep listening because we need to identify what the cause is and understanding secondary or other forms RLS could give an insight into primary.
This is a tricky one as I totally agree that diet alone cannot cure or even relieve idiopathic rls. But I do believe that eating a low inflammatory diet can be part of a kind of programmed approach that helps get it under control (see previous post). This means also taking iron and all sorts of vitamins, amino acids, fish oil, antioxidants etc. in the hope of having some good nights. I also think there is a good chance that the microbiome that we hear so much about is involved, so that home fermented foods, particularly yoghurt with added probiotics are vital. I tried these after reading Super Gut by William Davis and they did make a difference. I thought I had a pretty good microbiome but I was wrong. Taking codeine (or any other drugs) certainly must affect it. I understand that you eat an amazingly healthy diet but your microbiome might not be as good as you would expect.
I do hope this hypothesis gets tested. I read a few papers about the correlation and it seems a promising yet understudied area.
On a side note, I do make my own fruit kefir. Essentially kefir grains to which I feed sugar and organic fruits or tea resulting in a sparkling probiotic beverage. Delicious, no sugar, replaces alcohol for me in every social occasion. A treat on a hot day
This drink sounds delicious and healthy. So your microbiome should be in good shape. My thesis is getting a bit narrowed down here, but have you thought that the extra calcium plus the particular probiotics in home made yoghurt might be differently beneficial ? The Easiyo system does seem to help me as I can add the contents of different probiotic capsules and it all ferments together into a thick Greek style yoghurt.
Diet and microbiome (or the other way around) is a very interesting subject. I know about an Israelian study in Israel and the US about microbiome and what way of eating would give a specific person with an equally specific microbiome the most energy. It clearly showed that what works for one is mot necessarily or even outright harmful for someone else. Shall try to hint down a link (edit: succeeded, see below). Very interesting. But only data and thus applicable for people in Israel and the US so far.
Hi GuillaumeL, I am one of those who shared my experience with a low oxalate/salicylate eating plan. My plan is very strict and the things you eat would trigger RLS in me. Especially bananas which are low oxalate. My RLS is idiopathic meaning that the cause is unknown. I have inherited RLS from a long line of family sufferers and I passed it on to my son. I only shared my experience with my eating plan in hopes that it would help someone else and so that others might share their experiences with me in hopes I might find more information that would help me. I don't promote my eating plan as a cure. As far as I know, there is no cure. I'm not cured, just under control with a strict eating plan. I love when people share their experiences and I just hope that people continue to share because I'm convinced that we are missing something and sharing what works and doesn't might help us figure some things out.
Hi Guillaumel - I so agree with you. Those of us who have lifelong RLS know that nothing we do regarding diet, etc. helps. We have already tried everything and I speak with much experience. I first realised I had this when I was 14 (now 80) so I have tried everything (including the soap in the bed lol).Also if I anyone tries to tell me about "sleep hygiene" once more I will definitely scream! And you are also right about blaming yourself if your "new diet" does not seem to work. We don't need this on top of what we already suffer.
Sleep hygiene! That's my bugbear too. Worst possible advice for severe RLS. As RLS follows the dopamine cycle severe RLS patients will get RLS between sundown and dawn. So sleep whenever & wherever you can.
I wonder how many people have assumed that something cured their RLS, only to find out later that it was back again. A researcher would have to track each subject for months or years in order to rule out coincidence. I'm happy for anyone that has found the trigger, but there are too many missing pieces in this puzzle.
I hear you, but I also appreciate the contributions from what has helped others. I am 57 and my RLS started around your age. I used to take Tylenol p.m. and melatonin and Benadryl, never knowing that was making it worse. Through this forum I have picked up two things which have been very helpful to me.
One was to get my iron tested and to take iron supplements before bed. That’s not the cure for everyone but it was 90% for me.
The other thing I learned was not to eat big meals, to limit sugar, and not to eat late at night. I try never to eat after 3 PM. I also know I must be asleep before around 11 PM or the symptoms will very lightly kick in.
These are all lessons I have learned from this forum. I understand your frustration because this is a frustrating disease. But all the sharing people do with good intentions may just help someone out there.
What time of night did you have that chicken tournedos? Timing is everything. RLS is a disease of time…the night—time. Why? Why don’t I get RLS during the day when I’m sitting at my desk?
Really though, isn’t RLS just another way of saying we have small and few D2/D3 receptors, as well as a lack of brain iron stores, in certain crucial areas such as the striatum. Yet a lot of us manage most of the time and often for a good portion of our lives not even knowing what a lousy dopamine transport system we have. Time waits for no man and age is not D3 receptor friendly. Everyone’s receptors age, only we with RLS really feel it. The non-RLS world not so much.
The non-RLS world can do a lot of things we just can’t afford to. The non-RLS world can take SSRIs and even though it antagonizes their dopamine receptors or competes with their dopamine output, just as it does us, they can afford this antagonism. We can’t. We need every last drop of that dopamine that our pathetic receptors manage to cough out. In the long run this antagonism might actually be great for our receptors, it might actually up-regulate them, albeit temporarily, but it’s just so darn painful while we’re taking these substances.. The non-RLS world can afford to eat late at night, we can’t. I think it has something to do with serotonin and other chemicals that are released when we eat that competes with that tiny amount of dopamine that is put out at night, even tinier than during the day
So what happens at night that brings the RLS out like some kind of vampire? I think it has to do with the fact that our serum iron (not ferritin) drops precipitously at night. That drop doesn’t bother the non-RLS world because not only do they have beautiful receptors but they also have brain iron stores. I believe with all my heart and soul that we rely so heavily on that serum iron that when it drops at night it’s like someone pulled the plug on our receptors. And that’s why for some people taking ferrous bisglycinate before bed provides relief for the night. If your receptors are beaten down by the DAs or if you’re taking Statins or SSRIs then that 25mg of iron is like whistling in the wind. pubmed.ncbi.nlm.nih.gov/613...
I feel like we don’t talk near enough about this night time phenomena on here or about ways to up-regulate, even temporarily, our oh so tiny and few D3 receptors. Heck, there are porn addicts, sex addicts, food addicts and drug addicts that have severely down-regulated their receptors (probably no where near as bad as ours) and have seemingly found ways to up-regulate them while not giving up their chosen recreation. I have heard (and read studies) that show that severe calorie restriction will up-regulate receptors. Supposedly anaerobic exercise as well. These addicts just want to get their receptors back to their great and normal baseline. Then they can stop. I think I hate them. Our baseline stinks so I feel like these things would have to be a near constant for us. Ok, maybe it’s worth it? I know many people on here who swear that nightly fasts provide a good amount of relief.
Lastly, a while back I figured if dopamine agonists can down-regulate our receptors, albeit temporarily, then there’s gotta be a somewhat safe dopamine antagonist with a short half life that we can take in the morning that will up-regulate our receptors, albeit temporarily. Well my research showed that berberine is a possibility. A member by the name of RKM7 was quite brave, gave it a shot and after three months feels that it has helped her enough where she’s gonna try reducing the Gabapentin. There’s gotta be other substances besides berberine. The problem is not so much finding dopamine antagonists - most of us on here can name a dozen…melatonin, SSRIs, Benedryl, statins, antipsychotics - it’s a matter of finding ones that are somewhat natural and have a short half life.
Any ideas? Here’s some people desperately trying to figure out ways to up-regulate their receptors. And they probably have no idea what truly pathetic dopamine receptors feel like. We talk about diets, triggers, baths, massage guns, inflammation…how about ways to Up-regulate our receptors: theoptimizingblog.com/repai...
And even that article is not what I’m looking for. I’m looking more for this: : “Berberine can also inhibit the release of NE via activation of adrenergic α2 autoreceptors21 and can affect DA in a manner that antagonizes D2 and agonizes D1 receptors.” If I had googled RLS and supplements I would never have found this, or the above article. I know that we need to up-regulate our D2/D3 receptors and we can most likely do this by “antagonizing” them which is just the opposite of what the dopamine agonists like Prami do. Then we also need to downregulate or “agonize” our oversized and excitatory D1 receptors, especially if we were ever on Prami. If we antagonize the D1 receptors, as the much touted Ecopipam does, then I believe all is lost. We will feel good for a little while, but whenever you antagonize/block a receptor it grows bigger and stronger and that is the last thing we want with our D1 receptors. So I must be missing something with the Ecopipam. We need to shrink our D1 receptors by agonizing them. The point is you can’t Google RLS you have to use search words like D2 receptor upregulation
What this all shows, I believe, is that we stand a chance of altering the course of our disease. Maybe one day scientists will find a substance, much like berberine, that we take everyday and it keeps our receptors up-regulated enough such that we don’t get restless legs. Instead of a dopamine agonist at night, we take a dopamine antagonist in the morning? Do we really want to wait for the day when some scientist finds just such a substance or do we want to find it ourselves?
No pain, no gain. I’m particularly interested in the B6. I remember taking a whole capsule at night one time, which is about 3500% of the RDA. Not only did it worsen my RLS, but I was wide awake. Nothing some extra iron and a tiny amount of trazodone couldn’t handle, but that tells me it likely is a dopamine antagonist and possibly something we can take in the morning to help our night time RLS.
Thanks for sharing your inquiries and hypothesis! As soon as you start delving into RLS scientific research you see the mess we're in. A health problem which was treated with a focus on symptoms without a basic understanding of the underlying mechanisms.
Have you seen the study about the genetic markers affecting RLS (see reference below)? There are a lot of them. Which can explain why there can be different causes and different things that exacerbate individual RLS.
When looking at current knowledge in pathophysiology and neurobiology of RLS (see references below), it's still informed by the treatment of symptoms (Iron supplementation, DA med and Alpha2Delta ligants). We're still waiting for a breakthrough in understanding what's actually happening. Just like MS research, a lot of research money and a decade or two will be needed for that to happen.
- Ferré, Sergi, Diego García-Borreguero, Richard P. Allen, and Christopher J. Earley. 2019. “New Insights into the Neurobiology of Restless Legs Syndrome.” The Neuroscientist 25 (2): 113–25. doi.org/10.1177/10738584187....
- Jiménez-Jiménez, Félix J., Hortensia Alonso-Navarro, Elena García-Martín, and José A. G. Agúndez. 2018. “Genetics of Restless Legs Syndrome: An Update.” Sleep Medicine Reviews 39 (June): 108–21. doi.org/10.1016/j.smrv.2017....
- Romero-Peralta, Sofía, Irene Cano-Pumarega, and Diego García-Borreguero. 2020. “Emerging Concepts of the Pathophysiology and Adverse Outcomes of Restless Legs Syndrome.” Chest 158 (3): 1218–29. doi.org/10.1016/j.chest.202....
I’m not waiting around. We sort of, kind of, know what’s going on. A pristine diet is good for just about any condition. For RLS, anecdotal evidence points to not eating past dinner time. Nothing! There’s also a good deal of anecdotal evidence pointing toward taking ferrous bisglycinate before bed - not to raise ferritin so much as to sneak your brain some extra iron when it needs it most. Has to be repeated every night.
These are two things that people can try immediately. And in the long run that calorie restriction and extra iron may build up our receptors, but I’m not counting on that.
As mentioned above, I've been taking 2 Iron+ Bisglycinate 28mg capsules every other day. As I understand it, our body won't absorb it every day. Without supplementing for three months before the blood test (because the sleep specialist asked it), my Ferritine level was at 108 µg/L, Iron at 13 µmol/L. Since then I've kept on supplementing to keep it high.
Also I always eat dinner between 4:30 and 5:30pm, nothing afterward. Generally speaking, a low calorie diner low on carbs and fats. I've been following these diet guidelines for close to 10 years. My experience is that eating too much and too late will make falling asleep more difficult and will cause disturbed sleep. However, I don't see a correlation with my RLS. I'll have random RLS bouts whatever I do. Still, every little bit helps, so I adhere to the early dinner.
Again, these are good practices, but without meds, I'd be a non-functional, depressed, sleep deprived zombie.
What time of day do you take the iron? If I took the iron in the morning or afternoon it would do nothing for my night time RLS. It knocks the RLS out within one hour. On the rare occasion I wake up with RLS I take another 25mg of the ferrous bisglycinate.
You “have been misinformed” in regards to how often you can take iron to get max absorption. That being not sooner than 24 hours apart and it says so in the Mayo Clinic algorithm. I’ll see if I can attach the relevant section. The article says 24 hours apart OR every other day.
I’ve asked people on here to explain to new members about this IMMEDIATE effect that iron can have for some people. Some people are more interested in being right than helping. If if some/several members come on here and indicate that an aspirin or coffee or cream of tartar immediately stops their RLS, guess what? When I give someone advice I toss that in there that it’s a possibility. There are regulars on here, who regularly give advice. They will never throw the iron at night phenomena out there as a possibility. NEVER. So sad. Aspirin, caffeine, tartar, and iron are innocuous substances and the important point is you just have to try one time when you have RLS. If any of these substances don’t work for you then you don’t try again. Except with iron. You should probably continue to take iron (on an empty) once every 24 hours in an effort to see if raising your ferritin will help in the long run
I have tried several 'diets' over the years for various conditions and found that nothing helped in the slightest but each to their own. In regards to RLS, Ferrous Fumarate is the only thing that seemed to stop mine in it's tracks. Not saying it's a miracle cure or anything like that, and in all fairness, despite trying all the 'natural' remedies and other supplements for RLS, nothing else has ever worked (and we're talking in over 20 odd years). Whether or not the fact that I've never taken any prescription medication for my RLS (take too much medication for my comorbidities so didn't want to add to the rattling sound I make when I walk!) had any bearing on the iron working so well and so quickly, I don't know.
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More About My “Overall Body” RLS
Feeling excited about finding a cure for my RLS without meds!!
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I have found that going Dairy Free helps my RLS meds work effectively
