Natural remedies and food supplements

[Elffindoe]

This is mainly a personal view of the usefulness of these for RLS, but is based on some reading. I hope it is a balanced view.

Hopefully it offers some guidance for when you're choosing remedies.

The 3 main things you should find out about when choosing a remedy.

1) EFFECTIVENESS : does it actually work?

2) SAFETY : can it do any harm, side effects or the risk of physical or psychological damage.

3) COST : the monetary consideration is relative to how much you can afford in comparison to how much the remedy costs.

If you're rich and expense is not an issue then the true value of a potential remedy is its effectiveness and safety.

It seems to me there are three classes of substances which may help with RLS.

1) What I think of as NATURAL remedies. By this I mean things that are NOT man made. They may not have any legal classification and they are usually found in plants, fungi and moulds or in naturally occurring minerals.

2) FOOD SUPPLEMENTS. By this I mean nutritional substances which are intended to be additional or adjunctive to a normal diet. They may be legally classified as such.

3) PHARMACOLOGICAL agents. These are developed in laboratories and may be synthetic or very often derived from natural substances, e.g. opioids, ergot-derived dopamine agonists. They are legally regulated as controlled drugs, prescribable drugs or as (approved) over the counter medicines.

NATURAL remedies : The effectiveness of any of these is generally not known. There is usually no scientific evidence that they work so it's difficult to judge whether they might or not.

There may be anecdotal evidence that a particular remedy works, meaning a lot of people might claim it does. However this may not be a reliable source of information.

The reason for this is what's known as confounding variables. This means that when you use a particular remedy it may appear to work, BUT it may be that it isn't the actual remedy that's working it's really some other some other factor.

Most people have heard of the placebo effect. This is perhaps the main confounding variable, but it's not the only one. For example, suggestibility can be quite a strong factor.

The safety of natural remedies is not guaranteed! It is often assumed that natural remedies are automatically safe or can be taken without harm.

In some cases it is known that natural substances are dangerous up to the point of fatality.

In some cases, it may not simply NOT be known whether they're safe or not in either the short term or more significantly in the long term.

Safety might also rest in the quantity of a remedy you may take. A lower quantity being safer than a higher quantity.

CONCLUSIAN : find out as much as you can about the effectiveness and safety as you can before trying it. This is especially significant if it's expensive and you have a limited budget.

Trying it may be the only way you'll know it works for you, but be aware of possible confounding variables.

FOOD SUPPLEMENTS :

Recently published, (July 2021) recommendations for the management of RLS state that there is no evidence that any supplement, (apart from iron), can benefit RLS. This includes magnesium.

It doesn't necessarily follow that there aren't supplements that can help, it's just that it hasn't been proven statistically.

I do NOT include PROBIOTICS.

However, look at this way -

If you can manage to get a complete nutritional diet then you're already getting ALL the nutrients you need.

The only exception to this, I'm aware of is vitamin D.

There doesn't appear to be any evidence that taking any nutrient in excess of what you need is of any benefit.

If that's so, then benefit can only be gained if for some reason you have a deficiency of a particular nutrient.

In other words, you can only really judge if a food supplement is going to be effective is if you know you have a particular deficiency.

Before trying any food supplement then it might be worth considering if you have a deficiency or not.

It is known that iron deficiency is a cause of RLS.

It is known that vitamin B12/folate deficiency is a cause of RLS

It is known that correcting a vitamin D deficiency can benefit RLS

It is known that anti-oxidants/free radical scavengers or supplements having a known anti-inflammatory effect might help.

If you eat sufficient protein, then you will get all the essential amino acids you need. There is no apparent evidence that taking EXTRA amino acids has any effect on RLS.

If you eat sufficient minerals and vitamins then you will get all of those you need, (except vitamin D). There is no apparent evidence that taking EXTRA will help with RLS.

There are possibly three reasons why you have a deficiency.

1) Dietary deficiency. This isn't always a matter of choice, but where it is then correcting the dietary deficiency may be sufficient. If not, a food supplement is needed.

2) Poor absorption. There are specific and more general "malabsorption" issues.

Some medicines can cause malabsorption e.g. antacids and magnesium can inhibit iron absorption.

Some conditions can cause malabsorption e.g. any condition which limits the secretion of "intrinsic factor" in the stomach can cause B12 deficiency. This includes pernicious anaemia, long term excess alcohol consumption, post gastrectomy etc.

Inflammatory bowel conditions can cause general malbsorption including the absorption of protein and fat.

SAFETY : don't assume that food supplements are all necessarily safe. Some are only dangerous in excess. The safety of others you might want to try depends on your health overall, e.g. iron supplementation is considered unsafe for anybody with a transferrin saturation level over 45%. Potassium can be dangerous if you have kidney failure.

Some food supplements are contraindicated for some medicines.

CONCLUSION :

Ascertain if you have a dietary deficiency first.

There may be no point in taking a food supplement unless you know or suspect a deficiency. Blood test or certain symptoms.

If you know malabsorption is due to an avoidable agent, then avoid the agent, e.g. don't take antacids or magnesium less than 1 hour before eating or 2 hours after.

If you have a general or specific malabsorption condition then there is no point taking an oral food supplement. In which case you may need an oral spray, sublingual absorption tablet, skin patch or injectable food supplement. That is, if any exist.

For safety's sake consider discussing your intention with a doctor before trying it.

OVERALL

If you're sure something might work and you're sure it's safe and you can afford it, then give it a go!

Be careful of not being over influenced by other peoples' opinions, product adverts and unsubstantiated claims made in popular health magazines.

I have taken and am taking some food supplements, but not just for RLS. I took saw palmetto with good effect for 8 years, (anti-inflammatory). Iron. Probiotics, ginseng and vitamin D. Amongst others.

I stopped taking B12 since a blood test said it was well above normal.

[Dina1234]

Thank you Elffindoe!!

[LotteM]

Well and clearly written Elffindoe. And Thanks for doing the hard work. May I give a suggestion? You have added some examples, but I think your aim could benefit from a few more. Especially about what you mean with natural remedies, as I think you give it a different meaning than most people do.

[Elffindoe in reply to LotteM]

Thanks Lotte I'll try to add more examples of what I consider natural.

My view is that what many people call "natural" is misleading,

Natural, by definition means "not man made"

e.g. Cambridge English Dictionary.

"as found in nature and not involving anything made or done by people:"

Some people take it to mean all "alternative" or "complementary" remedies, which to be semantically correct is what they should be called, NOT natural. They aren't synonymous.

This is because not all of these are actually natural according to the strict definition.

There are alternative/complementary remedies that I would say are NOT natural because their production involves a lot of processiing or manipulating which is "done by people".

If a cannabis leaf is picked off the bush, dried and then smoked, that's natural. Cannabis oil isn't natural, it's processed "by people".

The reason I think the distinction is important is because of the common myth that "natural" is somehow better and producers of food supplements use this to promote their products which isn't entirely moral.

Whether the natural version of a substance is more or less effective than the processed vesrion, I guess depends on what the process is.

The answer is to judge each product on its own merits not just simply becasue it's claimed to be £natural".

Using the same example is cannabis as sold in the street or home grown any more or less effective than any CBD oil? Unfortunately, whereas, again, many people might think CBD oil is a thing, in fact there is no such thing. There are a myriad of CBD oils all with different contents.

The consensus seems to be that THC is important for cannabis to be effective for RLS and yet most CBD oils have some or all of this removed.

The problem is that many people are duped into thing that CBD oil is the answer rto everything, yet anothe fad. Such fads used to be called snake oil.

en.wikipedia.org/wiki/Snake...

THE OTHER THING you might ask is what's the difference between a "natural" substance and a food supplement. I believe this is a matter of legality. Food supplments have to be "approved" although not necessarily by medical licensing autborities.

Natural subsatnces may not be have any approval at all.

You unwittingly gave me the opportunity to also distinguish between "alternative" and "complementary" therapists which is this.

A true alternative therapist will advise taking a particular remedy INSTEAD of a standard allopathic remedy.

A complemtary therapist will advise taking particular remedies that can work ALONGSIDE standard treatments.

These are two terms which people also commonly think synonymous. yet their implications are profoundly different.

[Elffindoe in reply to LotteM]

PS, I imagine you can't get Lincolnshire potatoes in the Netherlands. They have to be grown in Lincolnshire soil, that's where they get the selenium from, the soil in Lincolnshire.

I suppose you could import some Lincolnshire soil (if this is legally allowed) for your garden and grow potatoes in it, but why would you. They probably wouldn't make good chips!

When I was twenty odd, I thought I'd discovered the best recipe for perfect chips.

First you crinkle cut them, not just slice them. This increases the surface area of the chip.

Next you heat the oil to the highest possible temperature without it self igniting or boiling its way out of the pan.

Here's what I thought was the real secret. You put them in the oil until they're going soft then remove them and let them go cold.

Yoy then fry them again thus "double frying" them.

However, I've recently discovered that perfect chips have to be "triple" fried.

Like many things in the UK, I think chip frying is over-regulated. If you go into a chip shop, they are constantly checking the temperature and checking how long they're frying. I think chip frying is an art not a science.

The result is very variable despite the regulations.

It largely comes down to the potatoes they use.

My local chippy informs you what potatoes they're using. It also informs you who caught the fish, down to the name of the fishing boat and where it comes from. I was surprised that most fish they use comes from Russian fishing boats. This delights my wife!

All to let you know I'm not just interested in RLS.

[MumofSam]

Thanks for all that, very useful.

What do you personally find helps with your RLS? I don’t think you’ve ever mentioned your own struggles before - or leastways I’ve never seen it - and I’d be interested to know.

[Elffindoe in reply to MumofSam]

Therein lies a tale

When it comes to self discipline, I confess, I have none.

Hence if you told me that some remedy for something involved daily effort in carrying out some major change in my lifestyle, sacrificing the things I most value or it taking so long you can't see any progress, then I am useless.

I no longer drink any alcohol, that has been easy. I also don't have great hunger for sugar, which has also helped. Coffee and tea I limit, (caffeine). I have been trying to quit smoking since 1982 and I'm doing quite well with this. I haven't smoked anything since 1982. So far!

I don't take any stimulants apart from mint.

I have been lucky that it hasn't cost me greatly in terms of effort or sacrifice at all. Three years ago I was profoundly ignorant about RLS and was at the height of suffering severe augmentation. I was then prescribed gabapentin for nerve pain around about the same time I learned about augmentation and how to deal with it. So I weaned off the pramipexole and since then have continued taking gabapentin.

I have found this more or less eradicates my RLS symptoms to such a degree, at least, that I am satisfied with the benefit without suffering any great side effect and without feeling the need to find a more "natural" remedy.

I take iron, at one time my ferritin was 43. I find the iron makes little difference. However I hardly have any symptoms anyway.

I have tried B12 until a blood test showed my levels were twice the maximum normal range.

I take vitamin D during the winter months, which reminds me, it's nearly November!

I have, with hindsight, personal experience of aggravating factors for RLS which I now avoid.

I was first prescribed pramipexole for RLS, after decades of mild RLS follwoing a course of the antidepressant citalopram and a course of the antidpressant mirtazepine. I think the latter was the final straw! I ended up being referred to a neurologist whose judgement I trusted. How wrong I was!

I don't now trust urologists either, for similar reasons, but not because urologists are neurologists with no "ne" or because they rhyme

I recently needed an anti-emetic for nausea and had to consider it very carefully. I was first offered metoclopramide which is a dopamine antagonist NO! I was then offered cyclizine, which is a sedating antihistamine NO! I managed to get a prescription for zofran which is OK for RLS. Ideally I'd like to get medical cannabis which could have several benefits for me.

I am overall, very wary about doing anything that might mean a return to suffering daily RLS symptoms, I have enough problems as it is. I was thinking of reducing the gabapentin at ome point, but in view of my current health, I decided against it. It's the easy option.

I do take supplements for other reasons.

I have learned a lot about RLS in the last few years and like to pass on what I know in a useful way. Sometimes I may suggest doing what I say, not what I do, but it's not without some foundation.

I'm glad for myself that I've learned so much because it seems to be a general thing that you can't rely on health professionlas to help manage RLS. I found the same with some aspects of my urological history and wouldn't be the same man I am today if I'd totally relied on a urologist.

[MumofSam in reply to Elffindoe]

I’m glad you’ve found Gabapentin works for you. Is your RLS primary or secondary?

[Elffindoe in reply to MumofSam]

Primary. I was told it was idiopathic originally. This is what I believe primary RLS was called before it was known what the causes were.

However, it is now suspected that even secondary RLS requires a genetic predisposition.

This may explain why some people with anaemia, for example, get RLS and others don't.

[Felicity21 in reply to Elffindoe]

Hi Elffindoe, There is a sense that your posts are based not only on extensive research but also on your own personal experience. So I too am interested in your RLS history. Please could you tell us a bit more. It sounds like you started suffering from RLS after being put on anti-depressants. A typical trigger! Please could you tell us what dose of Pramiprexole you were put on and by how much you increased it before becoming aware of Augmentation and coming off the Prami. How long did it take you to come off? Also interested when exactly in this process you came off the anti-depressants and when you were prescribed Gabapentin. Did your RLS get better as a result of coming off anti-depresssants or starting Gabapentin? Also fascinated which are on hindsight the aggravating factors for RLS which you now avoid. Sorry many questions.

[Elffindoe in reply to Felicity21]

Hi, some answers.

In the mid 1980's my (first) wife brought it to my attention that I was kicking her in my sleep. I had no idea I was and I'd never heard of PLMS.

I have had no signs of PLMS since.

By the mid 1990's, I started experiencing odd sensations which I now know to be RLS, but didn't at the time.

I think I first realised I had mild RLS about 2005.

The symptoms never bothered me.

In 2008 I had six months off work with acute anxiety disorder and took Citalopram for about 6 months. I did notice the RLS getting worse. Afeer the 6 months I weaned off the Citalopram, but my (second) wife, unbeknownst to me, conspired with a GP to persuade me to take Mirtazepine .

As a consequence my RLS became severe.

I saw a neurologist in late 2009. My GP said he was second rate, but had a shorter waiting list.

I weaned off mirtazepine about the same time.

The neurologist started me on 0.088mg pramipexole and gave me instructions on how I could increase it up to 0.54mg, the maximum. I did this within a few months and was never warned of the consequences nor told of any alternatives.

I wasn't told about iron and I wasn't told about aggravating factors.

I can't exactly recall how long it was before I started experiencing augmentation. It creeps up on you and I'd never heard of augmentation.

I recall that in 2012 I saw two different neurologists who prescribed clonazepam, but never mentioned augmentation.

My GP once or twice mentioned "other" medicines, but never said what they were. I suspect ropinirole or rotigotine.

By mid 2018 the augmentation was really severe, but I resigned myself to being able to do nothing about it. My poor (third) wife luckily adapted to my insomnia and twitching.

Also at that time my GP prescribed me gabapentin for nerve pain. He made no mention of it also being a treatment for RLS. He was actually a great GP, but hadn't a clue about RLS.

Shortly after that I found this forum, learned about pramipexole, augmentation and gabapentin and started reducing the pramipexole.

I weaned off by reducing by 0.044mg every 4 weeks. It took me about 8 months overall.

I saw another GP early in 2019. In preparation for having withdrawal effects I asked about an opioid, but she refused. She did give me a prescription for 10 zopiclone tabs. I had a ferritin test. She thought it was perfectly OK at 43.

She was actually a lovely GP, but ignorant. When I said ferritin should be at least 100, she asked me to send her some information on this.

Shortly after that I started sleeping better and daytime symptoms were disappearing.

I can't recall experiencing withdrawals so never needed an opioid and only ever took 2 zopiclone.

Since June 2019, I've only taken gabapentin for RLS and have been satisfied with it.

I also learned from this forum how antidepressants worsen RLS.

I sometimes wonder, if I'd waited longer before seeing the neurologist in 2019, or if he'd said about antidepressants I may never have started on pramipexole and all the suffering it caused me - for years!

On occasion, I have wondered what would happen if I were to stop the gabapentin, but have been too scared to do it.

I also suspect however that the augmentation left permanent damage. Strangely, although I only occasionally have mild symptoms and they don't last long, they can happen anytime and in my arms as well as legs, (right arm and leg to be exact).

I have had a course of citalopram since. Lowest dose. I started about September 2020 and luckily worsening RLS didn't start happening for about 6 months, at which point I weaned off it. Against advice.

Despite having RLS for decades, I feel I've been relatively lucky compared to many. However, bad luck that none of the GPs I've seen, nor the 3 neurologists knew a hoot about it.

My recovery from augmentation was entirely due to my own efforts.

It's good for me to know so much. My health has deteriorated in the last year and I'm currently taking about six different medicines. I day about because it varies.

As an example, I was recently advised to start a dopamine antagonist, but I asked for an alternative. I was offered a sedating antihistamine, but refused that too.

[Felicity21 in reply to Elffindoe]

Dear Elffindoe,

I wonder whether you have had any Counselling for your anxiety. Because weekly sessions with someone you trust who can genuinely empathise and try to feel and understand what you are going through or have been through might help. Pills are often just a plaster on a wound but Counselling might help finding the underlying causes and increasing awareness of one’s pattern of relating. In this case I am talking about a counsellor who would help you look at the past (such as a psychodynamic Counsellor) rather than a CBT counsellor.

It is a shame we will never know whether your RLS got better because of coming off the Mirtazepine or because of starting the Gabapentin. You said you were prescribed the Gabapentin for nerve pain. I wonder whether you are still suffering from that because you said you have contemplated coming off the Gabapentin to see whether you would still suffer from RLS.

As for the Pramiprexole, I too am amazed how GP’s can advise increasing the dose so quickly and by so much. No wonder it took you a long time to come off this DA. I myself believe in the Prolonged Release Mirapex which I would never dream of increasing.

You are saying you are on 6 different medications. I feel for you.

RLS is such a complicated condition. And everyone seems to have different triggers.

Thank you for all you do. And look after yourself.

[Elffindoe in reply to Felicity21]

HI and thank you very much for your kind concern about my anxiety.

I have suffered spells of anxiety/depression throughout my life and they have always been associated with specific events/situations and when the coping strategies I've learned have been overwhelmed.

I have always been lucky to access appropriate psychological help.

I've spent a lot of the time looking at the past and at one point decided this no longer served any purpose. I now favour behavioural therapies and the most successful for me has been Mindfulness CBT,

I've never taken antidepressants for longer than 6 months and only on 4 occasions.

The mirtazepine had the worst consequences!

Take care

[Bluebboat]

Thank you Elffindoe for yet another informative and judicious post. It is a good base line to remind ourselves of all the weaknesses of anecdotal stories and recommendations regarding this disease. The trouble is, as I have said elsewhere, that many medical advances start with unconstrained anecdotes and ‘old wives tales’. If enough people say, for example, that high dose magnesium (way beyond any so called ‘deficiency’) is effective for them in managing the symptoms of rls then sooner or later research will inevitably catch up. The current ‘scientific’ view is that it doesn’t will be reappraised or rethought. I am a rational person and reasonably scientific but to have personal experiments and sharing of seemingly way out solutions dismissed as unproven or unscientific is to me foolhardy. This forum exists in part to give voice and weight to a wide range of non medical experiences that contribute to a richer and more nuanced understanding of the disease. Here it is important to appreciate the patchy individualistic history of science where advances in theory often spring from common experiences or way out solutions. (Think of scurvy and lime juice in ships for example, or cobwebs and wound healing).

Already on this forum an interesting and productive division seems to be opening up between those who believe the disease originates in a failure of the leg muscles and ligaments and those who seem to hold that it is purely a genetic disorder of the central nervous system. The first leads to exercises and supplements including amino acids, the other to a search for the best drug. Both positions are being explored here through anecdote and maybe some halfway house might be the answer. Hence your vitamin and amino ‘sufficiency’ argument simply does not expand enough to increase our understanding.

Hope you will accept this rather argumentative post in the spirit of generosity you usually display!

[Elffindoe in reply to Bluebboat]

I profoundly agree with what you've written in your first paragraph.

My intentiion is only to give individuals a basis for choosing whether they wish to try an "out of the box" remedy for their RLS.

I never say that anybody should NOT try something only that they should be ablke to make an "informed" decision about it. and they're aware of possible consequences. This is a fundamental medical ethic, the right to informed consent.

Anecdotal evidence serves another function. It can also tell you what doesn't work!

Just to clarify, my personal view, I only say there's no apparent evidence for taking anything EXTRA nutrient to what we basically need is largely based on the idea that RLS is a disease of the sensory-motor areas of central (and possibly peripheral) nervous system.

For other parts of the nervous system or other systems, it may be a different matter.

I hope you accept the following in the same spirit I recognise you've written in.

I hadn't realised that was any division on whether RLS is a neurological condition or a musculo-skeletal (M-S) condition!

The evidence for primary RLS being associated with the central nervous system I'd say is incontravertible. I don't see on what grounds anybody could question it.

It being PURELY a M-S condition, I've never actually heard of. Nor does there seem to be any evidence for this.

There is an interaction between the nervous sytem and the M-S systems and also the circulatory system.

When it was first discovered that dopamine or dopamine agonists could reduce RLS symptoms it wasn't know WHY they worked, just that they did. It was only after research that the connection was discovered.

I suppose you could say that since exercises may help reduce RLS then this may explain why RLS occurs, (rather than the current accepted theory). However, I don't believe that any research has ever demonstrated such a relationshiop between the M-S system and RLS.

I don't know the reality of this, but one explanation may be that aerobic exercise does alter chemicals in the muscles which can affect nerves and hence reproduce a calming effect. More centrally exercise promotes the release of endorphins who 's effect can be calming, on the nervous system.

Another explanation is that exercise can increase blood flow.

Hypoxia, (lack of oxygen) has been shown to be associated with RLS, (possibly die to poor blood flow) and such things as venous insufficency has also been shown to be associated with RLS. That's why for exampole. compression stockings will help some people. Hypoxia will first affect those tissues which ,most need it i.e. nervous tissue.

A further thing you may note is that some authoritative recommendations for the management of RLS do mentions such things as exercise. It is known to be helpful for intermittent or mild RLS, but not for severe RLS.

I am less knowledgeable about the effect of amino acids on the musculo-skeletal system, but imagine it's a similar situation. A lack of amino cids can lead to muscle wasting, which doesn't casue RLS. I'm not sure how extra amino acids can have any effect on the M-S system generally. But I don't claim to know really.

There are many factors that can contribute to RLS symptoms which could also include the gastrointestinal system. It isn't hence all SOLELY due to a genetic brain condition, but even in cases of "secondary" RLS there is evidence that it only occurs if there is a genetic "predisposition".

OVERALL : I'm sure that there are things involving the M-S system that can indirectly affect RLS by way of the nervous system. Just because exercise can relieve RLS symptoms doesn't mean RLS is due to a lack of exercise.

I may have missed something, but the only division I can see in this forum, is between those who prefer trying to control their RLS without using medications and those that are totally dependent on medications. Neither is desirable!

Thanks for your debate

I wish RLS would just go away!!!!!

[Bluebboat in reply to Elffindoe]

Thanks for your generous reply. It is so helpful to be able to debate ideas without rancour. I am still not quite sure that we agree though. The difference between a muscular skeletal approach and a central nervous system approach is quite stark and ‘research’ does not really provide answers.I was very struck by Silvia10’s post a few weeks ago where she claimed she had finally cured her rls through fairly arduous yin yoga leg stretches. I have kept trying this and it does help. But most importantly she said that two distinguished German physiotherapists claim that rls symptoms arise from having too tight fascia muscles in the legs and that over time these need to be stretched and loosened. When this happens (over a period of months) the symptoms will disappear. She said she could feel it getting better and is now rls free. ( I hope I haven’t misunderstood her please check her post).Now where does this leave the role of the central nervous system? I mean, if I damage my finger and I only really feel the pain at night, is this a problem with my finger or is it a problem with my nervous system because it’s through it that I feel the pain? Pain killers will help but it’s my finger that needs to heal. Perhaps this is the case with rls, that is that it’s in the legs (or spine) where the damage lies? So much on this forum seems to point to direct bodily injury or damage being a lead or originating cause of rls.

Now another puzzler. In her book The Mood Cure Julia Ross recommends taurine for insomnia. I have recently started taking this and it makes a huge difference to my previous feeling of hyper arousal and lack of sleepiness, that was probably due to excess glutamate in my system. Would you call this a ‘deficiency’ of taurine. I don’t think I would.

On your brain/nervous system side of the argument however is that excess glutamate does seem to be a feature of rls and it’s hard to imagine that damaged legs would cause it.

Sorry to go on so but I am genuinely puzzled. Please keep up your great posts!

[Elffindoe in reply to Bluebboat]

Hi, thanks again.

A couple of points, or more.

If you did accept that M-S problems can lead to RLS, particularly primary RLS it cannot explain why people with no M-S problems and do exercise can still have RLS.

It may be a "factor", but that doesn't make it a cause. Similarly inflammation has been shown to be a mediating factor in primary RLS, but it isn't a cause.

The evidence that primary RLS is due to Brain Iron Defiency leading to low adenosine function and consequently to high dopamine levels and high glutamate levels is overwhelming and incontravertible.

If you were to deny this then, you'd need to explain why iron therapy. dipyridamole, (raises adenosine levels), dopamine, dopamine agonists and alpha 2 delta ligands (block glutamate) can relieve RLS symptoms.

If you insist then you'd have to connect these phenomenon to the M-S system.

In addition if you deny the research, (without good reason), then you are denying all scientific discoveries, consequent theories and subsequent medical/technological developments.

This would roughly take us back to the 16th-17th century.

Which might not be a bad thing. No light pollution and no global warming.

No criticism of Sylvia, it may well be that her exercises help relieve her RLS symptoms. They are recommended. However if she has primary RLS, then it isn't a cure, it's just symptomatic relief. This what the main RLS drugs do, they control symptoms. No "cure' for RLS has yet been proven.

Stop taking the drug, the symptoms return, hence, no cure.

It's important to distinguish between "symptom control" and "cure".

It's possible, I accept that 2 (TWO) physiotherapists may have found that some of their clients get relief in the way they suggest. This doesn't prove that this is the fundamental or sole cause of RLS. It only supports the recommendation to try exercise for mild RLS.

I would have to see what evidence they have for their claim.

Note also that you will come across many claims that some remedy or other can cure RLS. I think the most ridiculous you could come across is a bar of soap.

It would be very hard to prove that this can possibly even relieve RLS symptoms. If there were proof, how would you explain it?

Compare these individual claims or claims made by a few to the results of trials carried out on thousands on the efficacy of medicines whose therapeutic action is clearly explained by current accepted theory.

I previously I wrote I recall that there's no evidence (based on research) that EXTRA amino acids can help with RLS symptoms.

The confusion here is that some people think that if something relieves a symptom associated with RLS, then it also relieves all RLS symptoms. The most common ones are insomnia and pain.

Just because something relieves insomnia doesn't mean it treats RLS. The same for pain. This is overgeneralising.

People with RLS are not the only people to experience insomnia or pain. In fact I think that the prevalence of both is higher than the prevalence.

Again Julia Ross is just one person and not having read the Mood Cure I can't say on what this claim is based.

Accepting that taurine works for insomnia, the question is HOW does it do this. The evidence is that sleep is regulated in the brain. An inconsistency, if RLS is caused solely by the M-S system, how does this explain any effect may have on RLS.

I don't want to devalue anything you write, it's interesting. One reason for me not saying more.

You may find this article helpful. I'll add the link later.

[grassgree in reply to Bluebboat]

Thanks to Elffindoe and Blueboat for these helpful posts. Bluebboat, would you expound more on the differences between the two camps of thought--primarily musculo-skeletal vs. primarily neurological? Over the years, exercise has clearly and definitively increased my symptoms.

[Elffindoe in reply to grassgree]

As I wrote before, I'm not aware that there is any musculo-skeletal theory of RLS.

It is known that aerobic exercise and stretches especially can help relieve RLS symptoms.

Conversely, it's also known that excessive exercise can worsen it.

The latter is a "trigger", which means it can worsen your symptoms. It does not mean however that excessive exercise "causes" RLS.

you may find this a helpful guide to the latest evidence of the causes of RLS

sciencedirect.com/science/a...

[Joolsg]

Thanks Elffindoe, very useful & informative for those wishing to try a med free way of dealing with their RLS.

[goosiegander in reply to Joolsg]

I concurr Jules 👍

[Madlegs1]

Great discussion!

[Elffindoe]

Some examples of common"natural" substances

Cannabis leaves, flowers and seeds. Possibly resin too, but this has been partly processed.

Kratom : This is taken from the leaves of the bush which can be chewed or made into a tea. Kratom products are crushed or powdered dried leaves.

Most "natural" vitamins and minerals can be found in foods.

e.g. Natural Vitamin B12 is found mostly in meat and dairy products.

Heme iron is found in meat and non-heme iron in some vegetables.

All essential amino acids can be found in foods.

A good spource of natural selenium, an anti-oxidant is Lincolnshire potatoes. Sadly, they don't make very good chips. A good all round potato is Maris Pipers. Great chips, mash, and roasts. Not much selenium however.

But I digress.

Celery is a good natural source of antioxidants. Celery contains high levels of several types of antioxidants, including flavonoids.

NOTE The majority of vitamins found in food supplements are made artificially. They are neither natural nor taken from natural sources.

Any substance taken from a natural source and used to manifacture a food supplement will have been processed in some way. This commonly means that the substance is extracted from the source by some process. It is then contained in a base consisting of water, alcohol or oil (liquids) or other chemicals known as excipients, (solids).

This does NOT mean that it won't be effective. It may be more effective, because it contains more of the active substance per volume.

[WideBody]

Thank you another beautifully written post. I don't know how you manage it.

A frustrating part of RLS is that everyone is different. Iron definitely helps me. Maintaining iron at consistent levels is quite difficult. Iron does not help everyone. Magnesium never helped me and I have tried it a lot.

I noticed that you skipped Probiotics above? Did you plan to address it later?

I say that in jest, because I have completely changed my diet since dealing with my RLS. Covid restrictions certainly changed my diet for the better, no eating out, etc. I am still a sugar/carb junkie, especially at night, cookies, muffins, it's a busy household around here with lots of cooks.

What I really think has helped my RLS overtime is Homemade Kefir. I am not talking the store bought variety. I am talking the thick, clumpy and fizzy kind of Kefir. It is loaded with probiotics. Investigation into Kefir shows that it is anti-inflammatory. I believe inflammation plays a part in my RLS even though I still don't understand what inflammation is! Again, everyone is different.

The effect of kever is certainly not immediate in that a glass of kefir will not help my RLS tonight. I do think that over several months time I have noticed a significant reduction in my RLS symptoms. One area I do think it has helped is in my insomnia area. I use a sleep tracker. Most nights I sleep over 6 hours now. That would have been a record for me a year ago.

Another approach is behavioral. Although, I have tried yoga, message and I am a compulsive bike rider and gym rat. None of that helped my RLS and some may have aggravated my RLS, but I will never admit it.

What has helped is, I am better able to handle that anxiety attack that comes with RLS. For me that involves relaxation techniques such as focused slow breathing and meditating. Meditating for me is putting my mind elsewhere like bike riding, hiking or on the beach, just not in my bed.

Thank you again for you well written and thoughtful post. I so happy I found this forum.

[Elffindoe in reply to WideBody]

I didn't actually plan anything I wrote it was almost a stream of consciousness thing, which, depending on how you see it, can also be known as verbal diarrhea.

Thats why I missed out probiotics because this particular stream didn't flow that way.

What you're doing sounds good.

The connection between probiotics and RLS is natural intestinal flora (bacteria) inflammation and bowel "leakiness".

I can't recall the exact details, but I read that two things are needed, certain substances and other substances to help the first substances be utilised.

I therefore use pomegranate and cultures complex tablets.

This doesn't aid my memeory becasue I can't remember the exact details of why I do it.

[ToJa2 in reply to Elffindoe]

Great post and very informative.

Has anyone ever researched the link between RLS and hormone levels?

I ask this because mine started when I was pregnant with my children some 17 years ago. It eased after having them but never fully went away and now I am approaching the menopause it has been significantly worse over the years. I just wonder if there is a connection with this?

[Elffindoe in reply to ToJa2]

I believe there has been some research into this, but can't recall what it is.

[WideBody in reply to ToJa2]

RLS during pregnancy is common! The baby makes a huge (IIRC 20-30%) draw on the mother's iron reserves. Low folic acid can also cause RLS symptoms. My wife took maternal supplements which included both of these.

Have you done your morning fasted full iron panel?

[Birdland in reply to ToJa2]

You make a good point about hormones. My RLS went crazy when I took HRT. My feeling is that hormones do effect RLS but exactly how? So many unanswered questions.

[Elffindoe in reply to Birdland]

Hormones and neurotransmitters (chemicals known to be involved in RLS) are closely related substances and work in more or less the same way.

I always think of hormones as "long distance" neurotransmitters.

In fact, for example adrenaline and noradrenaline are BOTH neurotransmitters AND hormones. It just depends where they are. If they're in neurons they act as transmitters and if they're in the blood they act as hormones.

Since many transmitters and hormones are interdependent then it's no big surpise that hormones affect RLS. This may be also supported by the notion that, like in other things, the prevalence of RLS is higher in women than men.

The only real fundamental difference between men and women is hormones. All the other differences arise from that.

[goosiegander]

Thank you Elffindoe,

Very well written, considered and informative.

Jackie

[Memmy]

Very useful info. Thanks

[Graham3196]

Just a comment. When I was experimenting with potassium I spoke to some experts and apparently potassium is quite capable of ruining kidneys and other useful organs even if the organs start out in good condition. Make sure your doctor is aware of what you are doing with potassium.

One medical researcher reported very good results with Potassium Citrate so I followed his advice for a while until I was scared off. It didn't do my RLS any good and he stopped replying to my letters so I don't know what to think except to be cautious when increasing potassium intake.

[Elffindoe]

Thanks Graham. Personally, my kidney functions OK. Even though my potassiums normal I wouldn't consider it anyway.

Earlier this year, I think it was, one or two members were "aggressively", I'd say trying to persuade people to take potassium citrate based on a single methodologically weak study some years ago.

It has been found that folks with end stage renal failure on dialysis can get RLS through low potassium. Other than that, and the one weak study, thete's no real evidence that taking EXTRA potassium is of any value.

At best, potassium levels are strictly controlled and should you take extra, extra will shortly be eliminated.

Having too much, e.g. by an IV infusion that goes in too quickly, is potentially fatal.

So NO I say there's no evidence to support the use of potassium for RLS.

If anybody has a potassium problem, they let a Dr tell them what to do.

[Eryl]

It is important to note that no ammount of any dort of supplement will make up for the harm that bad diets with large ammounts of processed food causes, and if you don't think that your diet contains processed food remember that fruit juice and most bread are procesed foods.

[Elffindoe in reply to Eryl]

Thanks Eryl