Successful treatment of RLS

[helsom]

I want to share my story, because I have had success in treating RLS, and I am hoping, that the supplements I am taking, also can help others. RLS started for me about 10 years ago - I am 50 now - and it was getting worse and worse to a point where I almost did not get any sleep. I read a book called The Mood Cure, where some supplements where recommended.

In addition to a daily strong multivitamin, I started taking 600 mg Magnesium, 2500 mcg B12 (5000 mcg the first month) and 400 mcg Folic Acid. This healed the RLS ( I got my sleep back!). I am still taking these supplements and will continue to do so.

But then a year ago I started having (mild) RLS again. I did not understand why, but then I remembered, that Iron might also be the issue, so I started taking Iron daily. This helped, and I can now sleep again. Once in a while I get very mild RLS, when I go to bed - then I know, that I have forgotten to take my Iron (or simply need more) and I use a spray, which helps immediately. I have read, by the way, that you might be in need of iron, even if a test shows otherwise.

I use a spray for the Iron, because this does not upset your stomach, and for the same reason I take Magnesium as Taurate and pure Bisclycinate.

I hope, that those of you that suffer from RLS can find help in these supplements - like I did!!!! Good luck

[Joolsg]

Thanks for sharing. Raising iron levels dramatically improves RLS for the majority- often an IV infusion of Injectafer is needed.

[helsom in reply to Joolsg]

This should be the first approach, in my opinion, because it is dealing with the underlying causes and not the symptom. I would like to know: what is an IV infusion of Injectafer?

[Joolsg in reply to helsom]

It’s intravenous iron infusion at a hospital- (ferric carboxymaltose) given once. It has fewer adverse reactions than other iron formulations & works best for getting iron to the brain.

Many of us have had the infusion as it raises levels faster than oral supplements.

However- it doesn’t help 20% pf sufferers (I’m one of them) but dramatically improves RLS for 60% & moderately improves RLS for 20%.

The new NICE guidelines does mention checking iron levels first before considering meds & it’s what many of us advocate on here.

Doctors don’t bother researching the condition or reading the NICE guidelines so we have to be prepared to push for appropriate tests ourselves.

[helsom in reply to Joolsg]

Thanks for info

It sounds good with the new guidelines, but it is also my experience, that we as patients have to do a lot of the "work" ourselves. I live in Denmark and here the doctors are certainly not firstmovers (I dont think we even have any guidelines regarding RLS).

I come to think of something, when you tell, that iron does not help everybody. Maybe these people lack Magnesium and/or B12 and/or Folic Acid and not (only) iron. These supplements healed RLS for me for many years - long before iron became a problem for me.

[Joolsg in reply to helsom]

I don’t think that is the case. I’ve been taking magnesium Threonate & citrate & B12 & folic acid for years but it’s made no difference. I suspect there are many different causes of RLS ( kidney disease, spinal scars etc) & that’s why some of us don’t respond to mineral supplements.

I’m delighted it’s working for you.

[Hidden in reply to helsom]

Iron is the first mineral that ought to be considered for somebody with RLS. It is a major causative factor.

It's correct that if somebody had a deficiency in magnesium, vitamin B12 or vitamin D, then supplements to correct the deficiency can help. I don't believe there is any evidence that if there is NO deficiency that they can help.

As you say iron can be factor in RLS even if there is no iron deficiency anaemia. The RLS is due to brain iron deficiency. In particular this is associated with ferritin levels. It's also known that what's considered to be a "normal" level of ferritin (anything over 15ug/L) may not sufficient for somebody with RLS. It's better if it's at least 100 and ideally over 200.

If ferritin is below 75 then an iron supplement can help.

Iron supplements aren't that effective if ferritin is over 75 and that's when IV infusions may be needed.

Here's a link to some information about this.

sciencedirect.com/science/a...

You could ask your doctor for blood tests for ferritin and haemoglobin. If both are low then you need iron to raise the haemoglobin. If your haemoglobin is OK but your ferritin is below 75 then it is advisable to take iron.

It takes a while to raise ferritin levels, even with as infusion and if the level falls again, it takes a while for that to happen. An iron supplement then, doesn't act like a medicine. Symptoms don't immediately appear again when you miss one dose and they won't immediately go again when you take one dose.

Nonetheless, it's great that your having success with what you're doing.

[helsom in reply to Hidden]

Thank you for sharing your knowledge about iron. It is nice to learn more. I will take a test to see how my numbers are!

I am not an expert in any way - I have just tried the supplements, that were recommended in The Mood Cure - and it has worked for me.

[Hidden in reply to helsom]

I truly believe that our "bodily" iron "stores" have almost nothing to do with RLS. If they did we would have all day, every day RLS. There's a reason the vast majority of RLS sufferers only get it at night. Autopsies of people claiming to have had RLS during their lifetime have shown that we have pathetically small dopamine receptors in a part of the brain called the substania nigra as well as next to no iron stores in our brains. And in general, an all around lousy dopamine transport system. And the cruelest part is that the dopamine transport system (everyone's) needs a nice supply of iron to run smoothly. Btw, it's that system that takes dopamine in our brains and hurls it down our spine (aka central nervous system) from where it quiets our limbs (known as the peripheral nervous system). If you think about it logically, something must happen within our bodies such that our lousy dopamine transport system becomes even lousier at night? That's not to say we can't get RLS during the day, especially if we take dopamine antagonists like H2 blockers. We're all dancing on the head of a pin, so I think. Anything we do that antagonizes our pathetically small dopamine receptors will knock us off that pin. And, anything we can do to build up those dopamine receptors (supposedly like intermittent fasting or severe calorie restriction), will help us stay on that pin. I truly believe that the answer for our night time RLS lies in science. Science says that our "blood" levels of iron (not our stores) drops precipitously at night. The non-RLS world, that doesn't live on the head of a pin, isn't bothered by that night time drop, but we with RLS are terribly bothered. I believe our brains desperately rely on that free-floating iron in the blood because our brains are incapable of storing some and because our transport system is so lousy. So what I do (and have done for the past 15 years) is take a highly bio-available form of iron, just like you do, only I take it an hour before bed and only at that time. If I take iron in the morning, or if I take iron every other day, it will do nothing for my RLS. The effects only last that night, but that's all any of us need. I know there's a point of no return. If I'm taking 5mg of melatonin at night (which antagonizes dopamine) I don't know that there is any amount of iron that will relieve my RLS. I know this from experience. I also know from experience that ferrous sulfate just doesn't cut it for me, even with Vitamin C. Good luck!

[spygirl96 in reply to Hidden]

Hi Eitheror - I want to thank you for your post yesterday, 12/23/20. I have the kind of iron you referenced in my vitamin stash and I would take it in the morning and every other day. Last night I took it at bedtime as you recommended along with a .25 mg of Ropinirole and had the best sleep I've had in a very long time!!! I was taking up to .75 mg of Ropinirole and was trying to cut down to no avail... I would wake up in the night and have to take 1/2 of a ropinirole and wait an hour for it to kick in to get back to sleep for 1 hr. Then it would repeat the circle. So I just want to thank you for your post yesterday and I hope the iron continues to work for me.

[spygirl96 in reply to spygirl96]

This is what you said you used: Ferrous Bisglycinate (25mg) by any manufacturer is probably fine.

[Hidden in reply to spygirl96]

Yessss!!! I truly believe that’s what our brains are crying out for at night and whenever we have RLS. It has never failed me. Not to say you can’t wake up with some mild RLS, but it’s always momentary...with me. Please keep us posted. 🎉

[Hidden in reply to spygirl96]

One more thing, there is now a transdermal iron patch by PatchMD. I personally prefer the capsule. However, when my stomach is not empty I use the patch. The patch puts iron into your bloodstream more slowly, over a period of 8 hours. I like the pop of iron that happens about an hour after taking the pill form. It really knocks me out.

[Hidden in reply to spygirl96]

Hi Spygirl, just checking in to see how you are doing?

[oldfidgetlegs in reply to Hidden]

Can you enlarge on the 'intermittent fasting and severe calorie restriction' reference and how this affects our dopamine receptors? Have you tried this? I'm game to have a go at anything, and will try taking iron before bedtime. Thanks for your input - as usual this forum comes up with helpful suggestions. I know they don't work for everyone, but even if one person benefits then it's a real success! I wrote to my GP and Consultant about 3 weeks ago describing the severity of my symptoms and that my current medication was no longer having an effect, but have had no reply as yet, so thank you again.

[Hidden in reply to oldfidgetlegs]

Howdy, first off I would scroll down on the RLS page here till you find a discussion heading that talks about the "KETO Diet curing RLS." Severe calorie restriction generally means less than 1100 calories a day and can pose health risks if you don't know what you're doing and most people don't know...even these so-called health gurus. So be aware of this fact. With that said, I think it can be done safely. People have food sensitivities and allergies and then there's that whole Eat Right For Your Blood Type Thing. It's worth a read if nothing else than for a good laugh. Strange thing is they're finding that people with Blood Type A don't fare as well with Covid so there is something to this blood type thing. Do you have any sensitivities? You gotta try to avoid those foods. I try to avoid dairy, nuts gluten and soy and sugar (kind of). The first four are hard proteins to digest, for everyone. You should eat most of your calories between sun-up and sun-down as the cavemen did and eat nutrient dense foods in small portions whenever you're really hungry- by doing this you will be severely restricting your intake. So breakfast might be an apple and a gluten-free granola bar (for me) or a piece of smoked salmon or an egg yolk. Then I get so busy I mostly skip lunch and then I get really hungry. That's the type of thing that makes your dopamine receptors angry and has just the opposite effect of a dopamine agonist. Hunger (supposedly) will up-regulate your receptors while the agonist drugs will down-regulate them and make your RLS worse in the long run. Anything that gives us feelings of euphoria like food, alcohol, sex, recreational drugs will down-regulate our receptors if done to excess. Anyways, if I can't stand my mid-day hunger I will pop an Amy's frozen vegan meal into the microwave. It's 300 to 400 calories with a decent amount of nutritional value & no chemicals. Dinner is usually a great protein like wild-caught fish or grass-fed meat & tons of veggies, especially raw. We tend to eat late, so shame on me. That is so bad for the RLS and I'm not even sure why. So please don't eat late. Oh and beverages are water or white tea, maybe green too. I think you get the point. Try thinking of food as for survival and nutrition, not for pleasure. If you eat only things like crackers and black tea or turkey sandwiches and baked chips or pasta with Marinara sauce and diet pop or sugar free, fat free cookies you may still have low caloric intake but so will your nutritional intake be and that's where people can get into trouble, or if they get dehydrated. Diet is the tough part and I'm not convinced it's sustainable or that it can increase our genetically small receptors that much. The easy part is taking one or two capsules of ferrous bisglycinate on an empty stomach about an hour before bed, or as soon as you feel the RLS coming on. If the iron is going to work for you, as it does for me and a few others on here, your RLS will be gone after an hour and you will be asleep. If your RLS is not gone then go to Plan B which is to take whatever it is that you normally take to ease the RLS-only maybe a little less. There's no point in taking more than 2 iron capsules which each have 25mg. If it's going to work for you this should do it. Remember, iron first then your usual RLS meds, but only if you are not fast asleep from the iron. Let me know how it goes. Here's a weird article to help you sleep nytimes.com/2019/11/07/styl...

[Hidden in reply to Hidden]

Btw, according to some very confusing articles, calorie restriction, even without weight loss, will still up-regulate your receptors.

[oldfidgetlegs in reply to Hidden]

Thanks for the comprehensive reply. My diet's pretty good - no convenience food, no pop, fish but no meat, masses of veg, limited fruit because of sugar etc. Eating twice a day and no later than 6pm means I can try iron (ferrous bisglycinate) at bedtime on a reasonably empty stomach. I'll report back if I have any success. Thanks again.

[Hidden in reply to oldfidgetlegs]

I assume it did not do much for you. 😕

[oldfidgetlegs in reply to Hidden]

I tried 20mg ferrous bisglycinate last night an hour before bedtime on empty stomach and slept from 1am to 7am. Bingo! I'm going to try again tonight .... always optimistic.

[Hidden in reply to oldfidgetlegs]

Wow, and that is one low dose of iron you took there. Supposedly we only absorb about 50% of the bisglycinate. 20% for sulfate. Compare that to an infusion which is about 1000mg (?) and supposedly can take up to a month to work...if at all. All I can say is WOW, just wow. Congrats

[oldfidgetlegs in reply to Hidden]

Am trying again tonight - watch this space!

[oldfidgetlegs in reply to oldfidgetlegs]

Sleep from 2am to 7am - that's a real result. Day time wasn't so good as I went out in the car with my partner and had to stop, get out and walk about, then go home again. Still - sleep is priceless and I'm keeping my fingers crossed that the 'iron before bedtime' strategy continues to be effective.

[Hidden in reply to oldfidgetlegs]

Do you have to wake up at 7am?

[oldfidgetlegs in reply to Hidden]

7am trumps 2am or 3am - even thinking back to teenage years (and that's a bit of a stretch!) I was never one to stay in bed even at weekends. Always up and out, places to go, people to see. 7 is great.

[Hidden in reply to oldfidgetlegs]

Noon is better :). Well Fidget, welcome to a small club of people who only need iron right before bed to stop their RLS. I have a feeling that as time goes on and you get off any drugs that were down-regulating your dopamine receptors you will find some nights where your RLS doesn't kick in at all.

[Hidden in reply to oldfidgetlegs]

As far as daytime RLS goes I personally wouldn't take iron for that especially since as you know walking about relieves it. I always wondered why RLS is relieved upon standing and/or walking. Many years ago I researched what goes on in the brain when we go from laying/sitting to standing. Our brain releases dopamine, from one or two regions of the brain. That dopamine is what balances us as we stand and coordinates movement as we walk. I noticed that leaning does not completely relieve RLS. Strange feeling to be standing, but leaning, and not be relieved of RLS. I guess my brain did not sense much imbalance and hence did not release much dopamine. The odd thing with the RLS brain (unlike Parkinson's patients) is that we have plenty of dopamine. Maybe more than the average bear even - per autopsies. It's really our D2 receptors that stink. So when I say that substances like H2 and H1 blockers "antagonize" dopamine I really mean they antagonize the release of dopamine. To make a long story short, next time you have to jump out of the car, try balancing on one foot

[oldfidgetlegs in reply to Hidden]

The immediate relief going from sitting to standing/walking is remarkable - standing on one foot I'll try, prepared to give anything a go. You must be a medic to know what goes on in the brain, I'll challenge anyone to find much activity in mine!

[Hidden in reply to oldfidgetlegs]

You are a wild woman!!! And based on your happy tone, you are still getting good sleep. Here's to 2021-happy healthy

[oldfidgetlegs in reply to Hidden]

Sadly not such good sleep the past few nights even after a little smoke last night, but you have to roll with the punches and keep getting up! Stay safe, and have a happy and healthy 2021

[Hidden in reply to oldfidgetlegs]

Well wait, not so fast, have you thought about taking two 20mg capsules of iron? I will sometimes open the capsule up, pour into water then add vitamin c powder as well. A little orange juice would probably do as well.

[Guitarpickin in reply to oldfidgetlegs]

My doctor recommended intermittent fasting. Meaning not to eat anything two days a week (and the fast days could not be consecutive). When I told him I didn’t think I could do that, and mentioned the 5:2 diet (eating normally for 5 days out of the week with 2 days (non-consecutive) of eating 500 calories or less, he said that would suffice because 500 calories was basically nothing. I found it too difficult to do (food is my favorite thing), but after reading this thread, I think I going to give it another try. And I now plan to add bioavailable iron and hour before bedtime. Fingers crossed! Thanks everyone!

[oldfidgetlegs in reply to Guitarpickin]

I'm with you when it comes to food. I've just had a hot cross berry bun (telling myself it's breakfast) but it's the first day or two that are difficult and once you've made a start it's easier to carry on, and now you've brought up the subject of fasting again I'm going to give it another try. I guess you've been up a while - I didn't go to bed 'till 3am and up at 5.30. It's become the norm and I'm worried about the effect on my general health of such little sleep on a long term basis. Anyway, good luck and keep us posted!

[Guitarpickin in reply to oldfidgetlegs]

Thanks for starting my morning with a laugh. This is my first “fast” day in years and I am happily imagining your hot cross berry bun this morning. I’m sorry to hear the bedtime iron isn’t working consistently. My ferrous bisglycinate should arrive today and I will try taking it every other night (particularly on fast days) and see if, over time, it helps. It I notice that only eating 500 calories helps (or worsened) my RLS symptoms tonight, I’ll report back. If you try intermittent fast days and notice a difference either way, please check back in. Thanks.

[Zurp111 in reply to Hidden]

Be careful with melatonin as it does increase RLS, as it did for me after a while, I was taking 3mg every night. Check on its side effects, its generally written that it might cause RLS....

[brit1 in reply to Hidden]

Hi, just found this forum and if I read your post correctly, melatonin at night is not a good idea if we have RLS? Just checking as I do take it at night (altho it doesn't seem to help my sleep, with or without RLS)

[Ranjits]

Thanks very good information definitely will try all this

[Robynasmith]

I have tried all of these in different ways and strengths to no avail I’m glad it works for you

[helsom in reply to Robynasmith]

I hope that you will find, what works for you! It seems tht RLS can have different causes.

[bobse in reply to helsom]

I believe so too

[Rwall]

Hello! Can you recommend a particular iron supplement? The iron I have is the slow fe, and I don't believe it is working. Also, are you saying the melatonin is NOT good for RLS, because I've been taking that for a few years now. Could it be making everything worse at night?

[Hidden in reply to Rwall]

The melatonin gave me whole body RLS. It is on the no-no list. It raises serotonin (just like antidepressants) and thus the "release" of dopamine from our brains. Ferrous Bisglycinate (25mg) by any manufacturer is probably fine.

[Hidden in reply to Rwall]

Should also be taken on an empty stomach for maximum benefit.

[Stdorn in reply to Rwall]

Melatonin made my rls go crazy I had rls everywhere and was more miserable than ive ever been untill it wore off.

[helsom]

Hi there. Just want to let you know, that I am taking 1 mg of Melatonin for sleep, and it does not affect my RLS.

[Hidden in reply to helsom]

That is good to hear.

[bobse in reply to helsom]

Take care using melatonin every day can cause depression. I really messed me up for a year or so before i realized it. Depression seeps up on you slowly.

[phineas_007 in reply to bobse]

I prefer taking the supplement tryptophan instead of melatonin.

The processing chain for that in the body is tryptophan -> 5-HTP -> serotonin -> melatonin.

Several years ago tryptophan and 5-HTP were mild medications against depressions.

[Marlayna]

Hello! I read months ago on this forum to take iron and began experimenting on my own. At first I was taking 40ish Milligrams before bed with a probiotic. My RLS went away immediately after 20 years of increasing symptoms. Then we started traveling and I could only find 65 mg iron pills at the health food store and I started taking that at night. I started having increasing joint pain and fatigue. It got to be so bad that I went to an acupuncturist and was thinking that I had developed something very serious like MS.

I happened to mention the amount of iron I was taking, and he became very concerned and told me to stop taking it immediately. It’s now been five days without taking iron, and the joint pain and fatigue have lessened, but the RLS, burning, and heavy feet at night is creeping back. The acupuncturist thinks I was taking too much iron so I have an appointment with a functional doctor next Week and will begin lab testing and officially examining all of my vitamins stores.

I just wanted to warn others, because I thought if a little iron worked then more iron would be even better. I am 55 and live in the states, so like many of you I have to do my research and then push for what I want in the medical field. This thread is very helpful and I thank you all.

[Hidden in reply to Marlayna]

Interesting! The only form of iron I've ever seen come in 65mg tablets is ferrous sulfate. My body could not absorb it and thus it did not help with the RLS. They say substances our bodies can't break down and absorb can have bad side effects. No matter what you should wait to see what your iron levels are at before resuming.

[Marlayna in reply to Hidden]

I’m waiting. I could barely get off the couch and when I did walk it felt like I was made of glass. Just horrendous. Went on for about three months.

[Hidden in reply to Marlayna]

Marylayna, I am not a doctor, but I must say your symptoms are very similar to a cousin of mine who had whole body Gout. People think of Gout as a big toe thing, but it is not. Her whole body hurt, but mostly every joint in her body. Knuckles, wrists, ankles. She too could barely walk without being in terrible pain. There were some wonderful medicines that fixed her right up. Praying you will be fixed right up too.

[Marlayna67 in reply to Hidden]

Thank you! I'm now a week off iron and the horrible pain was almost absent this morning. I am really looking forward to the blood tests in a week to see about balancing all the stuff we must pay attention to: iron, magnesium, B12, folic acid, etc.!

[Joolsg in reply to Marlayna]

Just to let you know that I have highly aggressive Relapsing, remitting MS and I can say that it is absolutely nothing compared to my severe RLS.

Multiple Sclerosis is a severe, serious disease but, honestly, it’s not anything like as serious as my RLS.

I try to explain that to all my doctors to make them aware that RLS affects people far more severely than MS- lack of sleep & nightly torture.

The advice you’ve received is good- don’t supplement with iron until you have full blood test results.

Interesting that you also took a probiotic- perhaps take the probiotic on its own & monitor the results.

When you get your full panel blood tests back, if serum ferritin is below 200- you could take ferrous bisglycinate every other night to increase levels.

There’s a possibility that the iron you bought in the health food store may have contained something that triggered pain & fatigue or you may have caught a virus & it may not have been a reaction to the tablets.

If your doctors confirm you can take iron supplements again, take them every other night to fool Hepcedin blocking absorption into the brain and it raises levels faster. There are also fewer side effects.

Research articles attached.

pubmed.ncbi.nlm.nih.gov/319...

nogelorganics.com/should-yo...

[Marlayna in reply to Joolsg]

This higher dose that I took is called ultra iron by GNC. It’s 65 mg of iron as Ferrous sulfate. I did not have problems when I was taking a lower dose of what I believe was some other kind of iron. I take it with what was recommended on the forum which is a probiotic called LP299V.

[Joolsg in reply to Marlayna]

Wait for your blood results & if low on ferritin ( below 100) or iron ( below 60) take ferrous bisglycinate which is more easily absorbed and has fewer side effects or go back to the lower dose that stopped your RLS.

[Hidden in reply to Marlayna]

Yes, I thought it had to be ferrous sulfate. Supposedly the drug companies have it all figured out. So for example, 65mg of ferrous sulfate is really equal to only say 13mg because most people can only absorb about 20% of it. With ferrous bisglycinate it's about 50%. So 25mg x 50% is about 12mg as well. If you use an iron patch it's closer to 100%. I've known doctors to tell their patients to take those 65mg tablets of ferrous sulfate 2 - 3x a day. I, for one, don't believe older people can even absorb 20%. I hope you feel much better very soon.

[bobse in reply to Joolsg]

I have rls and femoral nerve pain in my legs as well as ankle tendonitis that gets worse on bad rls days. My mother has MS. I think maybe these things are related, or maybe are a spectrum.

[Joolsg in reply to bobse]

Very probable. Think spinal & brain scars from the MS cause mine but definitely any fault/ interference to the nervous system seems to trigger RLS.

[Katherine74]

Thanks for sharing! Did you find you developed any side effects of taking these large doses of supplements?

[atwitsendd]

Thanks for this info. How much iron, tablet and spray?