Good evening fellow RLS folk.
I hace recently changed my diet to Paleo/Keto. I am following Sarah Mahills protocol, (broadly) - to help my ME/CFS.
Brazil nuts, pecan and I think almond, (need to double check on those) feature in the food list. I have been happily eating those with my coconut yoghurt and ground linseed.
I saw mention fleetingly on line that nuts can exasperate restless legs.
Have any of you out there any personal experience of this being the case?
Jane 😊
I've eaten a variety of nuts over the years and have never experienced exacerbated RLS as a result. I can only suggest to try eating them and see if it affects you. Everyone's experience tends to differ.
Thanks rls-insomniac.I have a feeling, must have read somwhere and forgotton that it's maybe something to do with a low histamine or oxilate diet.
Will research.
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I eat a fairly high nut diet- but at breakfast- in a home made meusli- cashew, Brazil, walnuts, pecans and whatever Aldi have on offer. But not peanuts.
Never a problem.
I certainly haven't come across that idea.
Maybe someone monkeying around??😝
Ha! Thanks Madlegs.
I did a quich research and apparantly oxalate in food can apparantly for some or maybe even one exasperate RL.
I will carry on but with a few less than I'm having. (Which is a fair few atm with my somewhat restricted diet!).
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Yes, you can see from the other replies that they've done some research about it. The thing with this wretched condition is that what works for one person doesn't necessarily work for another. It's a case of trial and error! Good luck and I hope you find some relief.
Thanks rls-insomniac
It is indeed a case of trial and error.
Just checked your bio, and see you were trialing Temgesic 2 years ago.
Wondering are you still on that and hows it going?
It has been agreed by my neuro that I can trial Buorenorphine. My GP says no to prescribing - even though I currently take Oxycodone. So it will have to be private script. At least for now.
600 mcgs have been agreed. Although I have been told to spread this over 24 hours. Bup, as I understand it is supposed to cover 24 hours? How do you find it?
I am esoecially concerned about 3 doses over the day because my neuro mentioned negative effect on teeth. Have you found this an issue?
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I hadn't heard of the negative effect on teeth of Buprenorphine. I have been using a patch for several years now and have just had to have 4 teeth removed because they are crumbling. The dentist said I am not producing enough saliva.
Maybe thats it. Bup reduces saliva and so effecting teeth?Or maybe holding the pill under your tongue has a different effect from using a patch?
I am sorry you have had 4 teeth removed. I has 2 removed a couple of years ago and found it quite traumatic!
It was traumatic! I have decided to stop using the patch. I'm still in pain even when I'm using the patch. I also have moderate to severe sleep apnoea, so I probably shouldn't be using the patch anyway. I would imagine using the pill not to be so invasive. I hope it works for you.
anglereign
I am sorry to hear you are still pain. Are you currently taking anything for the pain? And restless legs?
That is terrible. I feel so sorry for you. Have you had your ferritin checked?
Hi, yes, I'm still using buprenorphine/Temgesic to control my symptoms. It has been life changing for me! On average I take between 400-600mcgs depending on my symptoms. There are days when I don't have any symptoms at all which is miraculous for me. I don't take any during the daytime but tend to take it in the evenings. My first dose usually 200mcgs around 9.30pm and the second around 10.00/10.30pm. If I do start to get symptoms earlier in the evening, I then take 200mcgs and for the most part that does the trick.
I started off on 400mcgs but found that sometimes I didn't get the cover i needed so my consultant agreed for me to take an additional 200mcgs as and when I needed it.
The slight downside is that I can sometimes feel tired in the afternoons, but if I keep active it doesn't bother me. (Maybe it's partly an age thing!!). I've also found that I sometimes experience hot flushes, which again is a side effect. Again, this could also partly be due to my age! I'd rather put up with these than be jumping around all day/evening with RLS!
With regards teeth, I think that is a side effect for some. I'm pretty vigilant about looking after my teeth because of the potential side effect and haven't experienced any particular problems with them.
Hope this helps.
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Thank you! yes that does help.Its interesting that you can miss doses.
Thats not an option with Oxy as mini withdrawal causes restless legs.
I am looking forward to the switch. Incidently, did you have any withdrawal from Oxy when you switched?
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No, no withdrawals that I was aware of. I was taking oxy and tramadol and my consultant told me to stop taking them immediately when starting on Temgesic. It did take a wee while for me to adjust, but I think that was to do with experimenting with timings of when I took Temgesic. So far so good! I hope it works for you, but there may be a period of adjustment.
Hi there. I wanted to throw in on the buprenorphine question. My doc originally said to take in the early day and then evening too and/or look to taking it at least twice a day. I too notice some fatigue in general from it and the idea of taking it in the morning AND evening just kicks me in the arse as I’ve already had to adjust my day accordingly. Surprisingly, I take a 2mg sublingual in the eve and go to bed - all fine. I used to take it right before bed but keep pushing it back to earlier evening hoping to get some relief from the tired part but can’t say I’ve noticed much difference. I don’t take anything else for RLS - I do have a klonipin script for break through but haven’t used it in 6 months. I hope that helps with your change over. I came to bup with a pretty severe bout of RLS with pramipexole and it is now very well managed. I also was off for two knee replacements taking opiates and was able to switch back over to buprenorphine pretty easily. I hope the transition goes well for you!!!
Thanks for the input Erinjee. Your dose is a fair bit more than mine. I don't know that 600 mcgs will surfice for me. Will soon see. I didn't realise it would produce tiredness. My current Oxycodone is the opposite, it slightly enlivens 🙄 Not what you need at 2am!
Hi Jane, may I ask - does the nut diet actually help the ME/CFS?
Hello Anglesreign
It's not a nut diet as such. It's the Paleo/Keto.
Sarah Mahill has done a lot of study re the imortance of micronutrients (meat and fish, bone broth etc) in reversing chronic ill health. Mostly ME/CFS .
One of her receips is cocunut yoghurt with nuts, ground linseed, berries and lemon juice.
I have this twice a day after a meal of fish and 'light' veg, ie not root. No potatoes because of starch. It is a low carb and no sugar regime. Paleo, no rice. legumes. etc.
I find it is helping. Very good for the gut microbe.
Have you read any of Sarahs books? She has an excellent one on recovering from ME/CFS and another one on Ecological medicine as opposed to Big Pharma.
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I read a few things a while ago that said nuts and walnuts especially contain a lot of glutamate which can be a problem for some people’s RLS. However I’ve experimented with abstaining from nuts and then eating them normally and haven’t noticed a difference to my RLS.
webmd.com/diet/high-glutama...
Thank you for ataching the link Munroist and for your experience😊
Hi MunroistJust checked the link, v. intetesting, thank you.
The only thing I have on the list are somtimes a few baby toms and occassionally anchovies. I have stopped the walnuts.
I don't have anything processed except my coconut yoghurt and supplements!
And you may not be affected by glutamate at all. The problem is people seem to be very different in what sets them off and what makes one person have a terrible night May big affect others. Until someone works out the actual chemistry or neurology of what’s going on there will be a lot of trial and error and guesswork.
No, I am.I cannot eat any takeaway type sauces or anything off the shelf with msg.
So def worth looking into.
Thanks again for your input.
I have found a big difference since stopping processed foods.
Everything I eat is cooked very simply from scratch.
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I eat a lot of pistachios and I don’t notice a worsening of RLS.
Thank you Birdland. I read last night that pistachios are 'good' nuts to eat re RLS.
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That’s good to know because I eat a LOT of them!
great 😉
I periodically eat a ton of nuts (I like them raw and eat walnuts, pecans, pistachios, pine, cashews, almonds, peanuts, and lots of seeds-mostly sunflower, chia, and pumpkin). I have never noticed any correlation with RLS symptoms when I binge on nuts and/or seeds. But like everyone else is saying, we’re all different.
Thank you Guitarpickin 😊
I am not familiar with the Sarah Mahills protocol but am familiar with the Terry Wahls protocol which is paleo/keto. I have eliminated my RLS by adopting a low inflamatory diet which is basically lowish carb (especially avoiding processed food) and avoiding refined seed oils.I believe the one of the causes of RLS to be systemic inflammation and systemic inflammation might also have a role in all neurological conditions. Refined seeed oils cause oxidative stress and most have Glyphosate residues so I only use cold pressed olive oil or coconut oil (there are a few others suitable like avocado oil). You may find that lowering your systemic inflammation may help with your condition
Nuts do contain a small amount of carbohydrate so I try not to binge on them because that gives me very mild RLS but I eat nuts regularly but not many at a time. You may be able to do the same. Oxylate can be a cause of inflammation for some poeple and if the Sarah Mahills protocol recommends eating a lot of dark leafy greens try to make sure that they are not the high oxylate ones to see if that affects your rls.
Thank you Eryl
I haven't heard of Terry Whales. Will research. Sounds very much like Sarah Myhill and Terry are of the same mindset.
I will cut down on eating so many nuts. Need some carbs though. Ground linseed is good to add for carbs and more. I only use cold pressed oil and coconut.
My only deviation from Myhill is meat. I know its the major important part of her revovery. I have a variety of different fish instead. I may try the liver capsules however.
Yes, inflamaion awareness is key.
Thanks again
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The body needs very few carbs because it can make blood sugar from protein but that's not always a good thing because if there's not enough protein in the diet it could lead to sarcopenia. I'm not a doctor but It would make sense to me not to worry about eating carbohydrates but to make sure that you're eating plenty of meat, especially the nutrient dense organ meats. Oily fish is great as (as long as it's wild and not farmed) it contains a lot of omega 3 oils essential for building nerves. Other nutrients essential for nerve building are iodine (get it from seaweed or a kelp supplement) and selenium (a good source is brasil nuts and fish)
Thanks for that ErylI have 2 different portions of fish a day. I know I should be eating organ meat etc. I am finding it tricky to do. Do you think the liver capsules would compensate.
I did start to eat meat daily for 2 months after never eating it before. I am 64. Stopped cause find it tricky.
I have hemp oil daily for the 3 Omegas.
I have selenium sups too.
I need to research more the iodine as I don't have a thyroid gland.
Thanks fot the heads up on carbs and sarcopenia. I have a fair few tbsps of ground flaxseed daily too.
I don't eat farmed fish.
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Gosh ErylI have just researched sarcopenia. I have been diognosed with loss of muscle mass. My endo advised that I eat steaks etc daily. He was very insistant. Looks like I had better go back to meat.
Thanks for mentioning that
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It doesn't have to be steak but animal protein is more bioavailable than plant based protein. Eggs are a good source of protein. If you can't stomach organ meat on its own try serching for a Western Brtish recipie called 'faggots' which are a spicy meatball made with about 1/2 pork with 1/2 pork liver sometimes with bacon and onnions added in. The liver is hardly noticeable.If you're exersising then short bursts of resistance work like press ups or weight lifting is better than walking for hours as it build up muscle.
Thanks Eryl
I will have a go with organic free range meat.
Thing is with faggots they probs have preservatives? I will check them out though.
Thanks for excercise advice. I have ME/CFS so starting short spells of yoga but not much more poss atm
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Just realised, you mean make my own!
Hi jane…my journey is way too long to describe here. RLS since 1979, and severe by 2006. I am happy to say that i am free at last. Free of symptoms, and free of medication. I have gotten myself off pramepexol twice, and gabapenten once…i am FREE…i credit a low oxalate diet and one cannot do this over night. Another person on this site steered me clear of bone broth, and non-stick cookware…both were very helpful. It’s been a long journey. But i can tell you for SURE, keto is going to make everything worse…you can DM me for more info.
Thanks for that Spunk 52. I have read some more online last night re the low oxalate diet. Its all interesting.
I don't quite see how following a pre industrial diet can make everything worse.
Its all pretty natural. No processed food, sugar and starch. plenty protein, veg and good fat.
I will continue to research as more information comes to light.
Thanks again
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Well if you decide to investigate oxalates, the most informative, and consistent information is from sally k norton…we all have to decide for ourselves what is best.
Thanks for that, I will investigate😊
I have a small amount of brazil nuts and almonds for breakfast everyday. It was suggested to me that they were actually good for RLS. After some testing I found exactly how many I need to eat each day and these along with a banana mean I very rarely have any problems with RLS now.
Thats intetesting Samara.Do you mind me asking how long you had rls for and was it a nightly issue?
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Hi. RLS came on very suddenly at menopause, it took me a while to even find out what I was suffering from. I was at that time suffering every night, usually being woke by it early morning and then unable to get back to sleep. I've now had it for about three years.
Oh dear what with the menapause as well .....And do you still have it every night/morning? Do you have any medication for it?
No I don't take any medication and never have. I find as long as I have the right amount of nuts and a banana by mid morning I am fine. If however I can't for some reason I will usually get an attack of RLS 2-3 days later. It's happened several times to me now so it's more than a coincidence. I have nuts and a banana for breakfast every day which I am really fed up of but it works for me. It took me a long time to work out exactly how many nuts I needed to eat though if I eat too many it will bring on RLS too.
That is really interesting.Do you mind me asking how many and what kind of nuts you have. I realise we are all diferent.
Well done for finding your cure.
I have 2 large brazil nuts (or the equivalent) and 8 almonds each morning.
Thank you SamarasI am going to try that too 😊
I suspect selenium is helping here too 😉
MY TEN STEPS TO ACHIEVE COMPLETE RELIEF FROM RLS
(AND A NEW LEVEL OF GOOD HEALTH)
1) Eat a low oxalate diet.
2) Take magnesium supplements but not magnesium glycinate. Excess glycine seems to stimulate the liver to produce oxalic acid inappropriately.
3) Avoid gelatin and gelatinous soups and stews because of their high glycine. Be mindful of animal protein that may be especially high in glycine. Collagen supplements probably should be avoided.
4) Eat organic vegetables and fruits. Non-organic are typically sprayed with oxalic acid solution post harvest to preserve freshness and nutrients.
5) Avoid eating asparagus. Apparently asparagusic acid operates similarly to oxalic acid.
6) Avoid refined, bleached and deodorized cooking oils made from seeds. I believe these oils have made me especially susceptible to fluoride poisoning. (I mostly use unrefined, virgin coconut oil and cold pressed olive oil. I also enjoy butter and ghee.)
7) Limit wheat products to those made with unenriched, unbleached, unbromated flour. Eat unenriched, organic pasta. When using commercial yeast instead of the natural leavening of sourdough starter, allow the dough to rise unrefrigerated for 12 to 18 hours, or more. (I typically buy King Arthur flour.)
8) AVOID CONSUMING FLUORIDE! Drink properly filtered or purified water. Avoid non-stick cookware that isn’t PTFE and PFOA free. Avoid canned foods unless the can liners are free of fluorocarbons. Don’t drink bottled or canned beverages made with fluoridated water. Wine, especially from California, is typically high in fluoride. Many pesticides are high in fluoride, so eat organic. (If you drink water purified by reverse osmosis you probably should add back appropriate minerals.)
9) You may need to take a break from goitrogenic foods. RLS and oxalate intolerance may be evidence of unusual susceptibility to fluoride and you may have a significantly impaired thyroid. In addition to damaging the gut lining, impairing iron absorption, causing magnesium deficiency and suppressing melatonin production, fluoride has traditionally been used as a medicine to suppress thyroid function. I experimented with avoiding all goitrogenic foods and my thyroid function greatly improved. After avoiding fluoride for more than a year I am slowly reintroducing cruciferous vegetables and the many wonderful fruits of the rosacea family. (I had been wary of eating fruit because of wide swings in my blood sugar. Eventually I realized that, for me, it was the goitrogens of certain fruits, rather than the fructose, which was causing my energy swings.)
10) Whenever possible avoid medicines that stress the liver’s detoxification function. I suspect the RLS augmentation from Pramipexole and similar drugs is due to liver impairment. Oxalic acid is a normal byproduct of liver function and it must be properly disposed of. When liver function is impaired, overproduction of oxalic acid may occur, especially in the presence of high glycine.
Since following these protocols I have returned to my college age weight without trying to lose weight; I feel like I have a new, youthful pair of legs; I experience a vitality I haven’t known in decades; and my severe allergies to dust mites, chiggers and springtime pollens have vanished. Because I’m feeling so much better I am hopeful that I may recover my ability to tolerate oxalates sometime soon. I wish you all the best. Jim Hejl
Hi JimThat is indeed a comprehensive response.
Thank you indeed.
I will need to print this out and research further. I am unaware of some of theses terms and concepts.
Lots to think about.
Thank you again
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Wondering why not glycinate for magnesium?😊
The short answer is that it caused me to have a recurrence of RLS discomforts. It took me a long time to put together an understanding that my liver was making excess oxalic acid and that glycine supplements and gelatin and gelatinous soups and stews exacerbate the problem. The issue here is that standard advice for people following a low oxalate diet is that you don't have to worry about meat and meat products because there is no oxalate in them. Some years after I became convinced that gelatin (which has lots of glycine) was triggering my RLS, some of the low oxalate websites started mentioning that researchers were finding that eating gelatin raises urinary oxalate levels. This confirmed what I had concluded based on my experience. The problem is that, when you have too much oxalate/oxalic acid in your body, the iron being transported to where it is needed inside your body gets "locked up" and can't be delivered. Sometimes doctors can help people by giving the extra iron. I think avoiding oxalate is a better place to start. I haven't proved it yet, but I have a very strong belief that over exposure to fluoride is what caused to be lose my ability to tolerate normal amounts of oxalate in my diet. The fluoride probably did something bad to my liver. And I think problem was partly due to the standard cooking oils made from seeds (soy, corn, canola, etc.) being co-toxic with the fluoride. Right now all I am sure of is that I have had extraordinary improvements in my RLS and general health while following the ten rules.
Thank you Notnowdad.You have researched a lot. I sm going to try and go with your 10 rules. Out of interest, which water filter do you use for flouride?
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Clearly Filtered now. I used to use Aqua Gear but theirs changed and stopped doing fluoride. I live alone and prepare all my meals and beverages at home. I keep two pitchers on the counter. I use a lot of water boiling vegetables, making pasta and washing lettuce, etc. I don't know my daily use but, because my dust mite allergy manifests when I'm exposed to fluoride, I know when I need to change the filters. I have doing it at about 6 or 7 weeks.
Right! I will go for clearly filtered!Thank you for all your advice
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I have found that all foods high in histamine worsen my RLS. Most nuts are high or medium in histamine.
Thanks Seaux, I had a feeling 
Restless legs
Restless Legs Syndrome
restless legs
Restless Legs
Restless legs.
