I've dealt with symptoms of RLS for 20yrs & it's the worst torture I've ever endured. I got tired of masking my symptoms and never finding the underlying cause or a cure. After years or research I came across an article that gave me all the answers I'd been seeking and my life hasnt been the same. It provides the actual cause of RLS which led me to finding an effective cure. I wanted to share my experience for anyone thats still looking for their own answers. For whatever reason our medical community seems clueless on this topic. I'm providing the link to the article below. The article was written to sell an RLS product but I never bought this product!! I simply learned from the information provided then employed my own techniques similar to those laid out by purchasing the recommended supplements separately and they worked for me starting on day 1 with no negative side effects or risk of augmentation. Anyone suffering from RLS needs to read this!!!! If your taking a prescription for a dopamine antagonist, do yourself a favor and stop taking it ASAP. This will help!
If you're suffering from RLS, ead th... - Restless Legs Syn...
If you're suffering from RLS, ead this. I suffered for 20 yrs before finding a solution.
First of all, I am very happy for you and hope it continues to provide relief.
Always interesting when people claim a cure, but as always I am also sceptical. Especially as you just provide a link and don't explain what it is that you found and what you have taken to get relief from day one. Would you mind to do so?
Very interesting article that backs up most of what is advised on this site.
The real test is " does it do what it says on the tin?"
I fully agree with the antiinflammatory idea-- we have been imploring people to eat healthy and avoid all processed foods, especially those with sulphates and artificial additives. Basically a form of Paleo diet.
Curcumin is tricky-- from my research it seems difficult to get sufficient amounts into the body to be really effective.
The brain/ blood barrier and iron infiltration is the really interesting factor. I would have to run that past Cochrane for a review.
Bottom line-- does this pill or its constituents actually work??
Hopefully we have some volunteers!😝
Thank again for posting.
That's what this site is all about.💚
Since I had never heard of Cochrane not living in the UK, I went out to it and searched on ropinirole - it said it was the first line treatment for RLS (NOT) and searched on gabapentin, which really is the first line treatment and found nothing on it and RLS.
Cochrane review is a meta review site of all medical reviews. It makes no recommendations as such. It is mainly to sort out spurious claims and theses.It is not backed by any pharma or such.
So - if it says something, as you point out, then that is merely a collation of theses by scholars. The dates of such reviews is obviously extremely important.
It is interesting that there are no medical reviews of gabapentin and RLS when it says it is a " collection of high-quality, independent evidence to inform healthcare decision-making." No wonder doctors prescribe dopamine agonists.
Curcumin (tumeric) can help, but interestingly it also can reduce the absorption of iron by 20 to 90%. so if taken, it should be taken in the morning if taking iron at night.
Yes, my research indicates the same thing.
Delighted you've found something that helps.There are a few people who respond well to supplements or diet.I take a good probiotic, magnesium glycinate, turmeric & D3. I have done so for years for my MS. Sadly, it's never made any difference to my severe RLS.
It's always worth trying vitamins and supplements before starting heavy medications, but I have a cupboard full of vitamins and supplements recommended by others ( pine bark, tyrosine, theanine, Q10 etc).
Usually supplements will help a small number of people but not the majority.
Thanks for sharing what has worked for you.
where do you buy your MAGNESIUM GLYCINATE ,PROBIOTIC, TURMERIC AND D3 FROM A CHEMIST OR DO TOU GET THEM ON PRESCRIPTION. I HAVE READ THE ARTICLE ABOUT SERATAME BUT WOULD LIKE TO KNOW IF IT HAS BEEN SUCCESSFUL FOR ANYONE IN THIS COUNTRY. YOUR ADVICE WOULD BE APPRECIATED
I buy my D3 10000iu & mag glycinate from BigVitsUK. I buy Symprove probiotics from Symprove and turmeric I buy from the Indian food section at my local supermarket, although some prefer to buy capsules from online vitamin shops.All these vitamins and supplements are available online.
The NHS does not prescribe vitamins & supplements.
Thank you for the recommendation . Sounds interesting and I will certainly consider Seratame or buying ingredients separately...I have never taken prescribed meds for RLS but already take gentle iron, magnesium and Vit D. Will look at this and report back.
Have you had your ferritin tested?
No I haven't...not sure if it can be tested in UK?? But my RLS started when I was 25, pregnant and very anaemic...had to have iron injections.
It can definitely be tested.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45%. If your transferrin saturation is OK, then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
Thanks....still can't believe UK doctors will do this.....
Where it says search HealthUnlocked at the top right, put in ferritin.
That's the first article that I've read that makes some sort of sense and agrees with what I've discovered myself, i.e. that rls is an inflammation issue. I have addressed the issue mainly by avoiding inflammatory foods, after all you're not going to put out a fire while you're still feeding it. I do supplement vitD in winter because it's essential for the immune system ( in Summer I cycle a lot with bare legs and arms so get plenty of Sun) and I supplement vit K2 because it regulates calcium and helps to keep calcium out of the vascular system and in the bones. I also take magnesium before I go to bed because it settles down my heart. I have curry weekly so I imagine hat I must get enough circumin from that. I never knew that these contributed towards curing the rls.
I have been free of rls for three to four years now apart from when I let the diet slip.
Your solution sounds interesting. Did you take vitamins K2 and D3 in pill form?
Are you taking any medicines for your RLS?
Yes, low dose codeine. This works but conscription is a problem.
Have you considered taking gabapentin which can completely control your symptoms with much less chance of constipation?
I tried gabapentine first off when RLs first started seriously bothering me and it had no impact. Sifrol worked well for a couple of years but I had ICD and eventually augmentation. Codeine is a life saver as far as I’m concerned.
Many people think gabapentin doesn't work because they don't take enough or take it in the wrong way. How much did you take?
The supplement Seratame costs $40 per month (60 tablets). My prescription for methadone costs $15 per month (60 tablets). Hmm. I know that methadone works, as I've been taking it for 4 years. Should I switch, not knowing whether Seratame will work?
Methadone just hides the symptoms, it does not address the cause.
As I was searching for RLS answers, I ran across Seratame. I bought it and tried it. DID NOT WORK FOR ME!! But they give a money back guarantee, so got my money back.
I noticed on your profile that you were going to try lyrica. What happened with that?
Hi sue and others on here, worth a try to try that Seratame , nothing ventured nothing gained, I have tried some different supplements, not sure if they are working yet, as they have a sedative portion to them, I fall off to sleep , but I know I still have the RLS as upon awakening feel that I didnt have a deep rested sleep. The supplement I have tried is called" rested Legs" maybe others have tried it, it contains " folate, Iron, Potassium Chloride, Valerian (sedative), Chamonmile and magnesium. The other thing I have done is I am trying the Iron angle by stil taking Ferrous Bi-glycinate 28mg every morning and also eating 2 Pacific Oyster Baked every day to boost additional Iron and Zinc, its definaitley given me more energy as I didnt have that any before, Going to get a follow up Ferritin test as the first one only showed a small improvement , from 37 to 43 and I think everyone on here says 100 is considered the min it should be, so after 4 full months I hope to have a better result, so weird all of this . One positive improvement I have run all my life and before I talked to all of you I had a no energy to really do that. Since being on the iron and adjusting my diet with oysters I can once again run 5 miles and do some interval work on the track which I definitely couldnt before. I might try that Seratame and see if it does anything, Please anyone share your experiences and thanks to all
Ross
from Canada
I advised you to try gabapentin previously. Have you?
Hi Sue, no I did not I felt too scared to use it as I know it is one of those big pharma type drugs and don't trust it Also I had a friend who used it as he was an epilepsy sufferer and he said it wasnt good for him, not saying it wouldnt work for some people , I just think the potency of that drug is a bit scary for me, I still dont understand how RLS comes about, Does low iron trigger it? was it my gene pool,? or is it because my body doesnt not have the capability of absorbing the iron into my own brain? Thanks for all you do on this forum Sue !
RLS789 ( ross )
It's up to you of course. But for many people it completely controls their symptoms as it does mine.
P.S. I forgot to mention on the iron to take it at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. Again you may already know this but just in case thought I would mention it.
You are better off taking the Ferrous Bi-glycinate at night as iron is absorbed more at night. I assume you are taking it with 100 mg of Vitamin C or orange juice since that also helps its absorption and take the rested legs at least 2 hours apart since the magnesium in it also interferes with the absorption. You can take 2 tablets of the Ferrous Bi-glycinate and take it every 24 hours, just no sooner than 24 hours to help increase your ferritin faster.
Yes, I'm trying Lyrica and it seems to be working although I can't tell for sure because I'm still weaning off Klonopin. I'm on the lowest dose of lyrica and it still gives me brain fog and dizziness (had a bad fall from it). Got the lyrica from a recent neurologist visit. She won't prescribe Klonopin even though it works for me. Did not like her attitude. I've been on requip and mirapex, hated them both with bad side effects, and she wanted to put me on neupro. I said no and she copped an attitude. Also have to be drug tested because Lyrica is a narcotic (Michigan,USA, is so bad about giving opioids, narcotics and benzos). My ferritin is 32 which she says is normal. Waiting to hear back from her about taking an iron supplement and what she thinks about iron infusion. I'm sure I'll be looking for a new neurologist, and she's supposed to be a RLS specialist. So frustrated like everyone else. Also tried gabapentin, severe dizziness.
Doctors !!! Yes you sure need a new neurologist. On the opioids, print out the relevant section from the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... to show to your neurologist. Another one to try is dipyridamole. It has helped some people on this forum and another one I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...
Iron Normal - NOT! Mine was 49 raging RLS - Ahhhh, iron supplements completely eliminated the Severe RLS. Doctors waved Requip at me on multiple occasions - I declined because of this forum! Geeze Louize - read the Johns Hopkins info...
hopkinsmedicine.org/neurolo...
I hear ya!! Doctors don't care about Mayo Clinic or Hopkins. That's why we find our own answers like on this website!!
32 only normal for someone WITHOUT rls. i had to provide that info to my doctor years ago after also said normal. im on infusions to keep ferritin above 100. and i work with both neuro and hematology. hematology is one who started looking into ferritin and b12 and folic which i was severally low in both.
If you're still eating the same inflammatory diet a supplement has no chance of working.
Hi Caruso1us Thanks for posting. As with others, I am often skeptical when information ends with “buy this supplement.” So often people site real sources in articles to help support their unproven theories in order to profit off of people who will literally try anything to relieve their symptoms from RLS. In the case of this article, I happen to agree with many of their underlying causes of RLS (iron not passing the BBB, inflammation, etc.)
My question to you…if you have found success using this information without buying their supplement, would you please share exactly what you are taking, including amount and frequency? I have been taking most, if not all of the supplements, vitamins and minerals the article mentions. I would LOVE to control my symptoms without the use of prescription medications. Also, if there are foods you completely avoid, please share that too.
RLS has no cure. That is a widely accepted fact. I am so happy that WE are sharing information that may help one of our fellow sufferers.
#RLSsucks
I found the article good and helpful - I won’t buy the product but in taking most of those things and absolutely believe that an anti inflammatory diet is essential. I have kept my RLS under control this way for 50 years without drugs apart from medical cannabis. I will give the probiotic a try as well - why not if something could give relief
Yes, I agree that an anti inflammatory diet is essential. I have eliminated my rls without drug by rigorously controling my diet. If anyone has a tummy they're suffering from systemic inflammation.
Hi can you post a photo link? I tried to click on it several times and it says it’s a bad link. Thanks.
Hi can you post a photo link? I tried to click on it several times and it says it’s a bad link. Thanks.
Funny and sad how we always find this narrative of "Doctor don't know about this..." while it seems their blog post is actually made up of a fairly decent RLS scientific literature review. There is always a gap between the most recent knowledge in the scientific literature versus what general practitioners (GP) know. That's why printing the "RLS algorithm" before going to a GP is always a good idea.
Generally speaking, I'm very critical of companies which sell supplements and of claims about solving RLS at large. From the study of demographics of RLS, it seems clear there are multiple pathways to RLS since it can be a secondary condition and has numerous genetic markers. Furthermore, as many have pointed out here speaking from their own experience with RLS, supplementation and diets, sadly, it doesn't work for everybody.
That being said, it's worth sharing because it might work for some!
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