I had horrific & i mean HORRIFIC RLS for months twice .... both times cured by raising my ferritin levels.
Most rls is caused by low ferritin ... which is cause by not enough iron in diet .
What caused my low iron situation ? ... My misguided Vegetarian diet :((
The 1st time i used supplements & it took me 8 gruesome months to fix it .
The next time i had multiple Iron Infusions and it took less than a month .
I raised my ferritin from 30 to 80 and that did the trick .
I've read some people need to get up as much as 500 or 600 .
------
So no more RLS ... buuuut ...
For decades despite being fit and eating a super "healthy" Vegetarian diet i have had eight severe chronic gut issues , plus some other weird neuro/dopamine issues .
I saw specialists and nutritionists and Function Med. doctors . More fiber less fiber, different fiber .... nada :(((
Then i heard about this insane sounding Carnivore diet doing miracles .
Six months ago i started eating ONLY meat , eggs, and dairy ... Specifically... Grassfed local raised meat , eggs, and dairy.
Within a month 80% improvement , within 6 months 98% !
Now back to Ferritin ... my level is now 280 !
If you want help finding local Grassfed farms let me know .
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Svengolly
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It's really great to hear that someone's found a successful regime for keeping their RLS at bay.
Anybody with RLS, especially idiopathic RLS, should be encouraged to increase their ferritin levels.
There are many reasons however why somebody may have low ferritin, only one of these may be a lack of iron in the diet.
Some people may have sufficient iron in their diet, but fail to absorb it effectively for various reasons.
For those with idiopathic RLS, the majority, neither dietary lack nor a failure to absorb it are the problems, there is a problem with iron metabolism and specifically the transfer of iron across the blood brain barrier.
Thus even people who have no serum iron deficiency can still have RLS.
For a person who has RLS to have the same brain iron levels as somebody who doesn't have RLS, their ferritin needs to be about 200. The non-RLS person can have a ferritin level as low as 15.
Whatever means you use to raise your ferritin level, diet, supplements or infusions are all possibilities.
I can't criticise anbody who wishes to try to raise ferrritin by eating meat, but it's probably not the best way.
As somebody who's been a vegetarian for 45 years and never suffered any serum iron deficiency, I can think of good reasons for not changing.
For most people with RLS, the problem is a dysfunction in transferring iron across the blood brain barrier, not necessarily a lack of serum iron.
Obviously, if there is an extreme lack of iron in the diet you will have iron deficiency. So, I recognise that sufficient iron in the diet is necessary.
However, no matter how high the iron content of your diet, there is always going to be a limit to how much of it you will absorb. This controlled by a hormone called hepcidin which inhibits the absorption of iron. If it wasn't for hepcidin, you would suffer iron overload. Some people suffer this, a condition called haemochromatosis. Which can be fatal.
So although dietary iron is important, it only needs to be sufficient. A great increase in dietary iron doesn't necessarily mean you'll absorb more.
This is particularly true if on top of this you have gut problems which suggests you may have had malabsorption - a failure to absorb nutrients. It's also possible that you have some sensitivity, e.g. gluten or lactose causing inflammation.
A slightly better way to increase ferritin is oral iron supplements. However these too are of limited effect because of hepcidin.
This leaves the best way of increasing ferritin as an IV infusion because this completely bypasses the absorption limitation.
If people want to eat meat to increase their iron intake that's a personal choice. It remains however the least likely way to increase ferritin.
I'm guessing there are many people who eat meat yet suffer RLS. There are many vegetarians who don't have RLS.
The main difference between people who have idiopathic RLS and those that don't is not dietary iron.
I believe you are really lucky. Your GP sounds knowledgeable about RLS which is rare. Great that he/she recognises the importance of ferritin levels.
If the brain blood barrier is the problem why do a majority of people Respond to higher Ferririn levels and why on earth would Synthetic iron pills That constipate and give another gut Problems Be superior to the natural Ancestral Way we have been Getting iron for 99.99% of our existence?
my husband (with pretty extreme RLS) has Haemochromatosis gene picture, too. This leaves me puzzled what- if anything- to do regarding extra iron for him. His iron is usually at the upper end of the range anyway.
He must NOT take any extra iron and it's not advisable to try to increase dietary intake of iron.
This is an example of why people need to be careful of anybody claiming to have found a "cure" for RLS. There is no cure for idiopathic RLS. There are only treatments that relieve the symptoms.
In addition, a treatment that might work for one person, might not work for another and for others may even be dangerous.
I imagine that your husband has regular blood tests. This may include a test for ferritin, but also should include a test for transferrin saturation. If this is over 45% then taking extra iron could worsen iron overload.
Does he take any medications for RLS and are they working?
He takes Sifrol. He eventually sleeps but often after numerous attempts to do so --continuously grabbed back from sleep by the restless legs (and arms etc when bad patch). One of the few things that ever gave him a really good run (no symptoms at all) was nine months of sour cherries everynight. Then, like so many strategies you all explore here, it just stopped working. Appalling complaint.
If he has been taking pramipexole (Sifrol) for years, he may be suffering from loss of efficacy or even augmentation.
Loss of efficacy is a common complication of taking a dopamine agonist [DA} (such as pramipexole, ropinirole or rotigotine). It means the drug simply stops working.
Augmentation is a also a very common complication and often occurs after the dose is increased because of loss of efficacy. Augmentation is a significant worsening of symptoms due to the DA.
Yes that's correct. Ascorbic acid (vitamin C) helps the absoprtion of iron. Taking a vitamin C tablet or drinking a glass of orange at the same time increases absoprtion.
Conterintuitively, you can increase the amount of iron absorbed by only taking a supplement every other day not daily.
This is because of the hepcidin I mentioned earlier.
If you think about it, logically or intuitively, it would seem to make sense that the more iron you take and the more often you take it, then the more you should absorb from your intestines.
However, this is not the case.
When you take in some iron a hormone is released called hepcidin. This hepcidin then prevents any further iron being absorbed. It can carry on doing this for up to 24 hours.
In that case once you have taken some iron, there is no point in taking any more iron that same day, nor even the next day, it will not get absorbed. Most of it, 98% or more will pass straight through.
In effect then, if you take iron every 24 hours (daily) it will not be much use.
More can be absorbed by taking it every 48 hours, (every other day).
I agree with you, grass fed meat is probably the best if you are a meat eater but not for people that dont eat meat. I don't eat meat or fish, havent for over 39 years now. My husband of 47 years eats both. I cook meat and fish for him and would prefer him to eat grass fed meat. I'm the one with the RLS and I would rather look for another kind of cure. I'll never change.
There are unhealthy vegetarian diets. Like potato chips and coke. A whole food all plant-based diet that includes beans, starches, greens and fruit supplies all necessary nutrients except vitamin B12. Latest research (see nutritionfacts.org) indicated all people over 65 , vegetarian or not, need to take a B12 supplement. Mammals get B12 from bacteria on the grass and greens they eat. We wash the bacteria off our produce. Low B12 is dangerous and can mimick RLS. Take a dailt supplement or grow your own produce and dont rinse off all the dirt :-). I have eaten a plant-based diet for 40 years. Raising serum ferritin from 50 to 100 taking ferrous gualconate with 50 mg iron, every other day with orange juice or vitamin C, improved RLS markedly. A diet of animal products--meat, eggs, dairy--has been shown to be a risk factor for heart disease, diabetes, obesity, and several cancers. These are all comorbidities that increase the risk of hospitalization and death from Covid-19. Gut bacteria, our microbiome,moderate our immune system. Meat and dairy destroy good bacteria and support a toxic microbiome and leaky gut syndrome. A healthy plant-based diet encourages bacteria growth that enhances nutrient absorption. Check Physicians for Responsible Medicine website, nutritionfacts.org, International Journal of Disease Reversal and Prevention, drmcdougall.com, for more info.
My 50 years of veg diet was clean clean clean. I did all the supplements . I had gone to dr./nutritionist and functional medicine docs . I have read all the vegetarian stuff... i even sent dr.Gregor a gift ..it is almost all wrong . For 99.9% of our human existence we have a eaten mostly meat. And btw it cured my leaky gut along with a score of other debilitating gut and neurological issues as it has for countless other people... search meatrx on YouTube. Take the Red Pill .
Stemed from childhood, living in the far east and seeing the wet markets. My husband children and grandchildren all eat meat and fish. Its just my personal choice.I've never had any iron deficiency, and apart from suffering from restless legs and arms, I'm pretty healthy. 🤞
good for you, Manerva! I've been a vegetarian for 34 years and am not going to stop now at age 77. I don't mean to judge any meat eaters, my husband is one and I love him after 60 years of marriage. to each his own!
There are numerous studies about the effectiveness of IV iron for RLS published by Dr Buchfuhrer, Dr Earley & Dr Winkleman in the USA.
There are papers about the role of diet in RLS, but these appear mainly to be about dietary elements that make RLS worse, not better. This is particularly relevant for people who have "gut problems".
Delighted it’s worked for you. Dr Buchfuhrer & Dr Winkleman in the USA both confirm that raising serum ferritin dramatically improves RLS in 60% of sufferers, helps 20% but sadly does nothing for the remaining 20%.
Doubt it. There are people on here who ‘cure’ their RLS with magnesium supplements. But that only works for a minority.
You said yourself that iron infusions were what helped you initially.
Several people have had iron infusions (including me) & it hasn’t helped. My serum ferritin went up to 785 after my injectafer infusion but I still have severe RLS.
However, if it helps 60% that’s fantastic. The rest of us are still looking for our miracle.
I followed a strict paleo, Dr Wahls diet for 12 months. Nada, niente, rien de tout.
You’ll see there are many of us on here with severe RLS who have tried all the diets ( low FODMAPS, low oxolate, paleo, keto, vegan) & all the supplements ( magnesium Threonate, magnesium citrate, potassium,etc), bought all the gadgets- Revitive, restiffic, hammer massagers, shiatsu mats, etc and have even spent months/years on different medications & we still have severe RLS.
I know from evidence & scientific research papers that iron is the missing link for a majority of RLS sufferers but sadly, I fall in the 20%. If you read my posts over the last 4 years you’ll see I have ‘ventured’ & gained nothing.
There is a minority who have refractory RLS & we spend hours of our day researching this condition trying to find 80-90% coverage.
You’ll see many people post about their ‘cures’ but they don’t work for everyone.
guess i'll have to read this when im with it lol nearly 6am here i know when my ferritin lever was 2 (even neuro dr couldnt understand why i wasn't having any affect as it was low other than my RLS was going crazy) now im at 24 my neuro dr says that's fine and normal lol he doesn't listen to me that it needs to be wayyyyyyyyyyyyyy higher . anyway i'll come back later and read about meat is it more expensive? this grass fed meat ? interested to know . later......
Manerva why oh why wouldTaking pills and/or massive infusions Be safer or healthier or better than getting nutrition the way that we have been getting it for 99.99% of our human existence?
So glad to here that your symptoms have subsided by 98%. While reading responses to your post, I couldn’t help But Notice how many people responded that they are vegetarian. I too am a vegetarian. I’m curious if lack of animal protein is a valid factor in the development of this tormenting disease.
Well I too had a dramatic lessening of RLS from iron supplementation. Ferretin level went from 49 to 105. Raging RLS went to an occasional episode in 3 months. There is also possibly a connection with SIBO (Small Intestinal Bacterial Overgrowth) and malabsorbtion of iron. I assumed I had SIBO (horrible bloating, GERD, etc) and treated it with an herbal protocol - which I still use when the GERD comes back.
There are plenty of people on here with very high iron panel levels, including Ferretin over 300 and they present with severe RLS. Brain Iron is the key, and no one is sure how to raise that.
I did read a curious post on a bodybuilding forum - users who took Testosterone supplements - increased their hemoglobin which depleted their iron stores and caused "out of the blue" RLS. They had never had it before.
Glad you found success. Many people don’t react well to iron supplements. But why take supplements when you can get it naturally From our ancestral diet?
I would love to follow that diet! BUT at age 74 I am on stage 3a CKD which means that my kidneys are unable to filter efficiently the special acid produced from such a diet which causes Gout!! A ver painful condition. With RLS and stage 3a CKD life is a batch!
looks like that is the only way for me tried some veg last night BP went to 95/62 then shot up to. 160 /80. I cannot tolerate any fruit or veg too well
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