I am frustrated that nothing consistently keeps my RLS symptoms down despite being under care of one of the top RLS neurologists in the U.S. I also have tried every non pharmacological suggestion. Many things help but not consistently.
It seems to me we are missing some fundamental cause of RLS. So I kept researching. I came across rlcure.com. it is a different approach claiming that our gut biome influences our neurochemistry. I am a scientist and I found that there is more and more research about the effect of the gut on many of our body systems. I don't see any of their recommendations that would be harmful so I decided to give it a try. I am five Days in and I am already experiencing less symptoms and better sleep. It may be placebo. Has anyone else tried the recommendations from this site or similar ones? Did you have long-term success?
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Qalba
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There is clearly a link with many diseases and the gut microbiome. I even considered a faecal transplant at one stage! Diet and supplements help many and the link to SIBO has been shown.However, for many on here, diet and pre and probiotics don't seem to help.
Many take iron supplements which can feed bad bacteria in the gut so we have to tread a fine line in trying to help the RLS without inadvertently making it worse.
But finding the cause of RLS would definitely help. I suspect there are seve different causes. Mine is spinal cord damage from MS. For others it's low brain iron. Many find that following a restricted diet helps enormously.
I try to follow a healthy diet with lots of green leafy vegetables and take a very good probiotic daily.
The importance of the gut microbiome to wellbeing is becoming well known both sides of the Atlantic. And the fact that diet can be a major factor in the management of various conditions, including RLS, has also become clear. Just avoiding some specific (types of) food has helped some; a stricter anti-inflammatory diet has helped others. But for others different additional treatments are necessary: iron supplementation is a major factor; in a smaller number magnesium is a factor; medications can trigger RLS and in some cases cause permanent damage; there can be a physical reason, etc. Hopefully you will be one of those where diet will resolve your RLS completely and permanently: good luck, and let us know how you get on!
RLCure was one of the first websites I found after I figured out that I had RLS. I went for quite a while before I figured out just what I had - docs initially gave me muscle relaxants - no help. The great awakening for me was the Johns Hopkins Neurology website: "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy (325 mg ferrous sulfate twice a day on an empty stomach) on average improved RLS symptom after 3 months." My ferritin was 49 and I raised it to 105 in 3 months with Ferrous Bisglycinate 17mg, daily, then every other day. RLS was severe and the horrible urge to move went away almost immediately - sleep issues remain. This was all years ago now (2017), and I haven't taken iron in many months (current levels Ferritin 97). I continue to wonder why was I iron deficient then and not now?
Basically RLCure has good information, most is footnoted with studies. RLS is a mystery wrapper in an enigma!
That's interesting because here they say the opposite hopkinsmedicine.org/neurolo... "giving oral iron more than once a day or at a dose greater than 85 mg per day does not necessary lead to a greater increase in absorbable iron."
Keep in mind anyone that is reading this, that the foundation of the website is DIET but there are many more protocols that can be implemented into one's life to booster the healing process (which the website goes into great detail is really lessening ones inflammation).
Diet, supplements, vitamins/minerals, herbs, emotional freedom technique (EFT), yoga, stretching, red light therapy, meditation etc. are all helpful in a team effort to become healthy.
The website goes into the emotional part of the condition quite a bit as well.
Like anything else, RLS has a emotional/habitual aspect to it that has to be addressed.
A drug addict or alcoholic in recovery still has using thoughts even after they stop using. That comes from years of thinking a thought over and over again. Even though the person has been through Hell and is glad to be sober, the habitual thoughts still pop up. It's unavoidable.
If you've had Restless Legs for 20 years and you change your diet and take a lot of supplements and meditate etc. .... thoughts are still going to pop up about your legs twitching.
And in most cases, it's going to set your legs off.
Universal law, energy follows thought.
It takes practice to not anticipate.
I know for me, I'd be sitting watching TV and thinking "wow, are my legs ever calm." Within 2 minutes my legs would be twitching.
Qalba: In case you see this, how are you doing now? I hope you're doing better. If you're not familiar with Stasha Gominak, you may wish to check her website.
I have had nosuccess with dietary change and gut biome. I tried for nearly a year. Looking at him severe RLS is for at least three generations, I think.my rls is simply b genetic. My poor grandmother was declared insane and ititutionalized for walking the floor all night! I will check this out further. I am now on methadone and it has been a game changer for me!
Except it's not simply a case of gut microbiome OR heredity. There's a very complex interplay between the two. A mother's microbiome is largely passed to her child. Beyond that, environmental factors come into play. I recall reading something along the lines of one's grandparents' diet/ microbiome being the most significant predictor of one's health.
I love watching medical mysteries unfold! There is such an interplay between many factors! We all look forward to more research and more answers about RLS. The sooner the better!
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