Winning the RLS war one battle (or food) at a time:

Something pretty incredible has happened to me. I may be jumping the gun but I'm hopeful that it's not just a circumstantial or biological coincidence. I’m 65 years old and since adolescence I've had severe RLS every night of my life. Incredibly, for about a month now my symptoms have been steadily subsiding. I have gone over three weeks without medication - a quite expensive medication that I've taken for many, many years - a medication that I absolutely hate because it has so many nasty side effects. But without it RLS prevents a peaceful sleep - bluntly, sleeping is torture and even with medication it’s never restful.

I've also had recurring vertigo - this as a result of a brain tumor that was removed in 2000. Severe vertigo occurs several times a year, but I’ve always been able to evoke dizziness with extreme or sudden movements. Suddenly I can't do that anymore. And then there's the ever-present threat of MS-like symptoms that make my legs weaker with each flare. You probably already guessed it. My legs are stronger - no doubt about it. I can pull my boots on without having to put my hands on my legs in order to position them.

So ... What's happening to my body? I think something profound!!! About two months ago my daughter and I decided to try and live organically as much as possible and without meat, with the exception of eggs and seafood. Our diet has been largely organic for several years now, but I often ate non-organic foods when I was away from home. And because I’ve always gained weight with too many carbohydrates, even complex carbs, I had never given any serious thought to cutting meat from my diet. But several months ago, after watching the four-part series, "Cooked," my daughter and I decided to get serious and do it right - consume foods that our bodies were designed to eat; access, buy or harvest our foods from environmentally and biologically safe sources. Only recently have we come to realize the magnitude of that commitment.

A little more about my health. I've been wearing a back brace because an old injury had flared. When I noticed my RLS symptoms were disappearing, I thought that perhaps it was because I was wearing the brace while sleeping. I found no evidence that this was an effective solution - indeed there was no information on the internet, at least that I could find, that anyone had ever even tried it. But I kept on wearing it to bed, just in case. My symptoms returned, but not as bad as before. And the brace was uncomfortable so I stopped wearing it to bed. To my surprise, the RLS symptoms continued to get better. So I did some more research, this time concentrating on the other thing that was new and different - the way I was eating. I looked up the nutritional values of the foods I had eliminated as well as the foods I was eating. That research led me to the subject of inflammation.

The foods that I had eliminated from my diet were known to cause inflammation; and the foods that I was eating were known to prevent inflammation. That motivated me to see if there was anything on the internet that studied the possible impact of inflammation on RLS - a subject, I discovered, about which there has been a lot of study and much discussion. In layman's terms (because this research was so technical that I had to read it over and over - even drawing flow charts to help me understand), I learned that there is a neurotransmitter, glutamine, that produces an amino acid, glutamate, which acts on nerve cells to excite them - keeping us active and alert. The neurotransmitter, glutamine also works on glutamate to convert to another amino acid, GABA (no, I'm not even going to try and convey what that acronym stands for). But GABA inhibits excitement - reduces anxiety, helps us get a good night's rest.

You've probably already put two and two together. The foods that I've been eating since adolescence inhibit the conversion of glutamate to GABA. Prior to adolescence I didn't eat a lot of meat because of religious reasons - I ate seafood and veggies, and most of that was caught, farmed and harvested naturally because that was our lifestyle. I slept well and deeply, got up without an alarm clock before sunrise and fell asleep naturally at sunset.

More research. I also discovered that you can't buy a reliable supplement or pharmaceutical that acts to increase or decrease either glutamate or GABA. You can buy addictive pharmaceuticals that interrupt the process and either wake you up or put you to sleep or help you to feel less anxious. You can buy supplements that likely can't cross the blood/brain barrier - at least not if you have a healthy brain. What I did, when I changed my diet, was to support the neurotransmitter glutamine to do its job, maintain a balance of glutamate and GABA. Wow!!!!! Really, this realization just blows me away!!!

Now we’re getting to the bottom line. The brain fog, the weakness and so many other symptoms that have challenged me to the point that I took an early retirement have been replaced with clarity and strength. This is no joke folks! I think that my suffering has ended – all because of my diet. In summary, quite by accident I discovered that Glutamine, a neurotransmitter, is necessary to make glutamate (an amino acid that stimulates nerve cell action) which then converts to GABA (an amino acid that inhibits nerve cell action). One wakes you up and the other relaxes you. Inflammation interrupts that cycle, which leads to restless sleep and in some people, like me, causes restless legs syndrome. Diets high in vitamin b-6, magnesium, calcium, vitamin k, taurine and l-theanine support the glutamate to GABA conversion.

So now I’m consuming all-organic foods, specifically so that my body can balance Glutamate/GABA levels. The following list is not exhaustive. But if these staples reduce or eliminate your RLS to give you a baseline, then trial and error will help you personalize your list – I’m thinking that what causes inflammation in one person, may not cause it in others. Consider also that even if it doesn’t kick off RLS symptoms, you may want to think twice before consuming some foods. For instance, although sugar isn't on my list, I do eat limited quantities. For me, processed sugar and even artificial sweeteners are addictive, not necessarily inflammatory, but definitely addictive. That may not be the case for you. I can eat organic honey without evoking carb cravings. So I've just about eliminated processed sugar. When I do eat processed sugar, it's organic and mixed with something like 70% cocoa. I haven't gained weight so that's a plus!!! With the renewal of energy that I'm experiencing as a result of restful sleep, I imagine that I'll lose weight simply because my metabolism will kick calorie butt, lol ... I'm hopeful anyway!!!

Food and Beverage Suggestions Based on My Experience: Begin your morning with 1/2 cup of carrot juice mixed with 1 Tbsp protein powder, 1 Tbsp almond meal and 1 Tbsp ground flax seed. Replace the rice, bread, and white potatoes with sweet potatoes, butternut squash and all things orange. Salmon, shrimp, mackerel, sardines and anchovies should be major staples – the lower on the food chain, the better. Non-herbal decaf teas that contain theanin, which easily crosses the blood/brain barrier: This includes Oolong, Green, and Black teas. Note that the theanin is water soluble. Just use a tea infuser or drop your tea bag in a cup of hot water. From there you can either drink it hot/warm or make iced tea with it. I drink it without sugar, but every once in a while I’ll add a bit of honey. Spinach, Green Onions, Cherry tomatoes, Bananas, Olive Oils, Kefir, Tofu, Eggs, Chickpeas (I’m currently experimenting with beans – but chickpeas haven’t caused RLS symptoms), Hazelnuts (make a yummy spread by blending hazelnuts with honey and cocoa powder to taste). Coffee, early in the morning - anymore than that and my symptoms return. I drink it hot or iced, sometimes with a little honey but no cream. For me, with the exception of kefir, dairy products kick off RLS symptoms. I have it on my "to-do" list to experiment with soy-based and almond-based milk-like products.

16 Replies

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  • I've recently made tremendous improvements to my RLS through a diet called Low fodmap diet. It's amazing what happens when you really commit to eating good, organic foods. For the first time in my life I'm actually learning about the foods I eat all the time. I'm hoping to go vegetarian soon and vegan eventually. You are right, when we eat the foods our bodies are supposed to, it's amazing how light and energetic you feel. Happy for you

  • Been vegan and vegetarian all organic. Low fodmop too. Did not help me. Wishing you the best

  • I found that FODMAP was a huge benefit but not 100% I then tried the Low Chemical Diet developed by the Royal Prince Alfred Hospital in Australia and it has given me just about 100% relief. I am now trying to make my diet more humane by adding foods.

    NOTE that the chemicals they are talking about include some man-made chemicals but are mostly chemicals that occur naturally in the food. There are some oddities such as: Bananas develop a chemical as they ripen so I eat slightly green bananas. Steak is fine until you overcook it. You have to order it rare. I doubted that until I cooked a steak while answering emails and the resulting blackish steak kept me awake until 4am!

    I realise you are vegan and I wonder what you will eat on a low chem diet. Eggs are a great source of food and I eat some form of meat everyday. Its going to be hard work. I support your noble principles and respect for other species but I think my body evolved to process a different diet. I worry that my body might fall apart under the stress of such restraint.

    Good Luck

    Graham

  • I tried lowfodmop. Nada. Zilch. Ughhh

    Just tried raw. Again. Nada...

    Just going back to vegetarian and yes eggs are on the menu today ☺

  • I was worried about the number of allowable foods on a vegan diet but eggs are allowed?

  • Vegan no

    Vegetarian if you're ovo

    Lacto-ovo is dairy and eggs

    No meat or fish at all

  • This is really interesting. I came off meds for a year by stopping alcohol and caffeine and taking turmeric supplements. But then the RLS started again. I drink a lot of ginger tea and decaf coffee - what do you think re those ? Recently experimenting with stopping E numbers and artificial coloured foods but maybe I need to go further.

  • Thank you for your post. It was extremely interesting. I enjoyed the detail. I have not found that changing my diet has had a huge impact on my rls, but I have no doubt that our food intake does make a difference to our general health.

  • Thank you for that detailed information. Like you, I have been changing my diet drastically over the past 8 months and take all the supplements you mention. I'm really pleased it has made such a difference to you. My new diet hasn't improved my RLS.

    I'm sure other people will benefit from the helpful post as diet and certain supplements seem to make a huge difference for a lot of people with RLS

  • My wife did something very similar and it helped massively with her endmetriosis pain (also inflammation), taking her from a prisoner of the sofa to back working 3 days a week and living an almost normal life. Look up Deliciously Ella recipes. Two years ago I would have said this was hokum, but the difference in her is amazing.

  • Thanks for the detailed description of what you are doing and how its helped your several problems. I am very happy to hear its helping.

    I will try to absorb your information and blend what I can into my low Chem diet to try to help me with expanding my food choices.

    My good news is that I have found that if I break my diet and have a lousy night then I can easily restore myself to good again by sticking to the diet for two days. Not that I am deliberately breaking the diet but I have been scared that I would spoil the good and not be able to recover.

    From my experience with milk-like products I would start with lactose free milk as I have found it much better than soy or almond. When out and about I ask for lactose free first, almond second and soy as the third choice. I try to limit myself to two cups of soy coffee per day because I think it hurts to have much more. It probably depends on what else I have during the day.

    I have tried to reintroduce normal milk on two occasions The recommended method is 125ml on day one, 250ml on day 2 and 375ml on day three. I got to day three the first time and then lost a whole night's sleep. The second time I lost a night on day two. I have been scared off but plan a third attempt soon. If it fails then I will accept that I can have about two cups of coffee with real milk per day. Not a bad outcome. Incidentally in Australia we have Xymil lactose free milk and if I drink it "straight" I can't tell the difference from real milk.

    It works fine on my Uncle Toby's Oats that I use as a filler to make up for food.

  • Very interesting reading ,I am keen to have a go as I don't get many good night,cold you please tell me what you eat and what tabs you take ,please tell me thank you very much x

  • Hi Beady I recommend that you speak to a dietician, and perhaps to your doctor, about this because the diets are pretty restrictive and probably not very healthy I say diets because I was following the FODMAP diet and now I am following a low Chemical diet. The Low Chem diet is very restrictive and many people have had success with the less restrictive FODMAP diet. If you search the web for FODMAP you will find lots. It all originated at Monash University in Melbourne Australia and their website is a good place to start. You can buy a Monash App for your phone from your App store Those who have it tell me its good value.

    Also search this forum for FODMAP and you will find many bits of information.

    The low chemical diet is similar to the FODMAP diet in that it is an exclusion diet. You start with a diet that excludes just about everything. See if your symptoms go away. If thet do go away then reintroduce foods into your diet in some sort of methodical manner until you have a decent choice of foods to build your lifetime diet.

    I eat one slightly green banana per day, eggs poached or fried, meat (medium rare) and fish. Uncle Toby's quick oats with Maple syrup for sweetening and a bit of flavour) (for breakfast and often as "desert" for evening meal), Steamed or boiled rice usually with a can of salmon. I keep a bowl of rice ready to heat with something for flavour like the salmon or chicken. (I used to eat tuna but I was told that Tuna is not a good idea. Some veges - potatoes, pumpkin, carrot, green beans and I drink decaf coffee and tea plus about one litre of water per day. ( I have been told to drink more water but I can't) I use lactose free milk around the house and Soy or almond if I am away from home. This is my basic diet, I could add a few things to this diet but I don't have time to spend experimenting much

    At night I take an iron diglysinate tablet, 45mg, and frequently 2 x 500mg of paracetamol for sciatica.

    Any questions let me know.

    Graham

  • Thanks Graham for being so helpfull,I. Used to have a wieght prob so I have always had to be carful with food I have goats milk don't eat meat at all lots of fish , with plenty of veg and fresh fruit with yog . I don't think I do to bad but the rls is just a pain in the BUT I just wish there was an answer xx

  • Fresh fruit and veges sounds good but it might not be helping. I am being a bit extreme but I am trying to conform to both diets so bananas are about the limit of my fruit. The veges are also limited but a bit better than fruit. But, we hope, only very limited until we identify what's good for us.

    Writing here has made me think about paying a bit more attention to the real limits on the diet. I think there are a few more foods that are allowable that I haven't tried yet. I will report soon.

  • Good advice actually, on speaking to a doctor or dietician before going down the diet route. And that advice should be for all what people say works for them on here. :)

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