Did someone previously say something about the Keto diet helping RLS??

[RLSBecca]

Hello 👋,

Sorry for being dippy but did someone say a while ago that going on the keto diet stopped their RLS? Or was that a dream? I am so tired I spread margarine on my tupperware boxes the other day 😴.

Thank you allllll so much x.

[Accipiter]

It gets mentioned here and there, I don't think there are any real enthusiasts for keto here so I will have a go.

Keto is a transition diet. I've eaten low carbs, high fat for 10 years so my body burns fat as efficiently as possible anytime it can get it. At first your body will adapt to produce ketones in the absence of carbohydrates, and over time less so.

It is a horrible diet, with lots of problems and resulted in me developing RLS; that’s a long story. But being fat adapted is the healthiest and most flexible thing you can do. Just don't get fanatical about the keto diet or demonise carbs.

The idea for keto helping RLS is that certain things trigger RLS, with sugar and inflammation being popular among some. There are a variety of diets that people claim to help them. However, in my opinion the research is so poor and in some cases actually wrong for RLS, and this is highlighted by diet being ignored in the published papers, so it is not of interest or as big as the current cult of brain iron deficiency.

As I posted somewhere else, diet is tricky with RLS because symptoms can take a while to resolve if there is improvement so you may be on a winner but give up too early. If you have the lifestyle flexibility, it is worth trying for at least a week or two low oxalate, carb free, FODMAP and maybe dairy free. You are looking for things getting better or worse. If so, this is a good sign and then you can finesse the details.

[RLSBecca in reply to Accipiter]

Thank you so much for your reply. It's just all so exhausting isn't it, well absolutely everything is but trying to remember all the bits and pieces, because if I don't write things down straight away then that's it gone. Really appreciate your email though, helpful, thank you 😊.

[Joolsg]

Diet seems to help some people but you won’t know until you try it. I followed a strict paleo diet for 12 months in a desperate attempt to get relief. Didn’t help at all. I then modified it to make it low FODMAPS for a further 4 months. Still no improvement.

I came to the conclusion that diet definitely helps some people but makes no difference to others.

Give it a go for a month or two and if it helps, brilliant. If not, at least you’ve tried.

Good luck.

[RLSBecca in reply to Joolsg]

Thank you so much for your reply. I think I might be a goldfish, notepads and scribbles everywhere. So frustrating when you are willing to do pretty much whatever is required, either changes to diet or the like but if only it was that easy 🤷‍♀️🤦. Thank you so very much for everyone's advice and support as always.

[Joolsg in reply to RLSBecca]

I know exactly how you feel. I have a room full of devices/supplements that have worked for people on here that I’ve rushed out to buy but which did absolutely nothing for me.

Pandora’s box.

Take care.

[ro203bgau]

Couple of things that help me a lot: Don't eat ANYTHING after 7pm. A small bowl of cooked frozen spinach every night around 7 makes a huge difference for me. Also only water with supper. Then there's all of those offending foods to avoid as well.

[RLSBecca]

Ahh, good to know. Thank you very muchly. Water is a huge part of RLS I definitely notice a big difference if I am not adequately hydrated. Unfortunately my RLS isn't a bed time thing, it's a 24 hours a day situation. I am just taking an hour at a time because there's so much information. I too have that room full of "yes this is definitely going to be the answer" stuff. Fun times 🤪.

[Eryl]

Yes keto is just an extremely low carb diet. I've been on low carb for 2-3 years, and am also avoiding refined vegetable oils which can be very inflammatory. It's rid me of rls, and improved my breathing which to a cyclist is very important.

I've added a lot more leafy green veg to my diet as it's a good source of calcium, vitamin c and vitamin k2. Also I take a weekly supplement of kelp for the iodine (which is supposed to be an essential for the nerves). And I also take omega3 capsules an eat oily fish one a week (nerves are made of fat so feeding them keeps them healthy).

p.s. going low carb or keto all in one go may have side effects (keto 'flu') which last a week or two while your body adapts, but it's worth it in the long run.

[wantokporo]

Keto diets are used by children with intractable epilepsy, and appears to be successful. I was interested in the diet because it is low glutamate which is a trigger for my PLMD. As you may know, our troubles are often treated with therapies that those with epilepsy use. I found the diet very difficult and gave up. Lyrica acts on glutamate and has been very helpful with the PLMD. Yesterday, because of the Crohn's flare up I am dealing with, I was led to caprylic acid and MCT oil (MCT oil seems to contain caprylic acid and other things). Turns out that if you look at the epilepsy websites, they recommend supplementing with MCT oil as part of the keto diet at every meal. It seems that MCT oil assists somehow in keeping the body in ketosis. I am going to try and find a nutritionist who knows something about MCT oil for both Crohn's and movement disorders and see if I can learn anything as I begin supplementing with MCT oil. Side effects seem to be minimal if you build up slowly.

[RLSBecca]

You guys!!! 😊 🙏

Thanks for all the information, I seriously appreciate all the replies and it gives me more avenues to go down, and consider.

🤔

[NicoleMil]

Can I recommend start keto diet for my friend(over 50 y.o.) I found this review cronicasportiva.com/ds-keto...

[Graham3196]

I am sure that for some people diet is very important but strangely it seems that going on any diet is better than eating random foods. I have been helped by first a gluten free diet and then more by a FODMAP diet. Others have reported relief by following a vegan diet, sugar free diet, the Keto diet. For many RLS people there is some sort of relationship between diet and their RLS.

The FODMAP diet has given me about 8 years of relief but seems to be wearing out. Perhaps I am developing intolerance to rice cakes. I am still much better off than I was 10 years ago. More likely I am getting older and the RLS gets worse with age (generally) Perhaps living stress is higher with worries about the virus?

I am about to try the Royal Prince Alfred Hospital low chemical diet to see if that helps.

I am trying to build my expectations for the lochem diet so that I should get a placebo effect even if the diet doesn't work so it might bring artificial relief for the next year. I will even accept that as a good victory over our monster.

[AceVen]

I had RLS for years which has now completely gone since being on Keto. I relapsed one day recently and had high carbs meal and funnily enough my RLS came straight back. I also have much more stable levels of energy throughout the day and have lost weight on Keto which is a bonus. I only have good things to say of Keto from my personal experience. Also, there's some pretty interesting stuff out there linking sugar to disease, if your interested. I found the doc by Proffesor Lustig called "sugar the bitter truth" on YouTube very interesting.

[CeHardy]

Hi I’ve done One Meal a Day with Keto and my RLS is completely gone. I’m on Day 28 of this lifestyle. RLS was so uncomfortable plus I’m overweight that I had to do something drastic. I feel great most days. Blood pressure and blood glucose are normal to great.

[Hidden]

So much good news on here today. Congratulations! As I mentioned in a recent post, we with RLS have small (and few) D2 dopamine receptors as compared to the non-RLS world. “Severe calorie restriction” is a way to “up-regulate” people’s dopamine receptors supposedly - see below article. I always felt that since our receptors are genetically small to begin with that things that would help normal people who had “down-regulated” their receptors through, for example, addictions wouldn’t work for us. You are proof that it can work for us. The below article deals with calorie restriction and dopamine receptors. researchgate.net/publicatio...

[Hidden in reply to Hidden]

Btw, this article, and a few others I just read, state that it doesn’t matter what your weight is, severe calorie restriction or intermittent fasting, will up-regulate your receptors.