Research on diet & RLS: I joined a... - Restless Legs Syn...

Restless Legs Syndrome

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Research on diet & RLS

26 Replies

I joined a couple of months back and the posts about diet are interesting and appear promising. I find its fluctuation of caffeine and alcohol, rather than consumption, which affects me. Wonder if the same is true of sugar (had a couple of christenings and kids parties where I did the dog on cake and felt it in the legs for a week).

My question - Does anyone know of any scientific studies on the link between diet and RLS? I’ve searched GoogleScholar, but cannot find anything.

26 Replies
Madlegs1 profile image
Madlegs1

Most evidence is anecdotal- but strongly so.

There is a certain amount of confusion between rls and plain insomnia.

The difference obviously is the need to continually move preventing sleep. Insomnia involves just not being able to sleep without any restless legs.

There are loads of insomniac triggers- caffeine being the most common.

Cochrane review is a good place to look for scientifically based research.

I must have a dekko myself.

Just on the caffeine - I have taken strong fresh brewed coffee often- without it causing rls- keeps me awake ok- but not restlessness. Apparently that fact ( coffee causing rls ) is based on a discredited Japanese study involving one response. Funny how "bad science" can infiltrate everywhere. 😬

Cheers.

in reply to Madlegs1

Thanks for that. I've had a quick skim through Cochrane, no luck. Caffeine seems to be my main trigger (of RLS not insomnia) and limiting to two cups in the morning has helped a lot. If I go over or under I start to feel it the pain to varying degrees. The impact of diet seems to be such a strong theme in many threads that it’s a shame no one’s researching the link. Wouldn’t necessarily be an expensive piece of research either.

Cheers

Madlegs1 profile image
Madlegs1 in reply to

Gerrard JW et al. Neuropharmacological evaluation of movement disorders that are adverse reactions to specific foods. Intern J Neuroscience 1994; 76:61-69.

Gerrard JW and Richardson JS. Periodic limb movement disorders and spells of profound muscle weakness due to airborne and dietary factors in humans. Intern J Neuroscience 2004; 114:1483-1492.

My quick look threw these two up. Plenty more in there. 👓

FLAME43 profile image
FLAME43 in reply to Madlegs1

fantastic post, thank you

in reply to Madlegs1

I agree totally! I cut caffeine out years ago for other reasons and it made no difference and have never been a big coffee drinker ( Decalf Espresso in the a.m and that's it) also the sugar thing...totally agree it can make things worse, for everyone not just RLS suffer's but I only eat it once a week and sometimes sleep better "Carbed up" :) haaa

Pippins2 profile image
Pippins2

James 14, Anything which blocks the Dopamine receptors will cause an increase in RLS for most sufferers. Alcohol blocks Dopamine receptors so that is generally accepted as why alcohol increases symptoms. Same for lots of meds which interfere with the Dopamine system eg antidepressants, antihistamines and anti nausea.

LuckilyI don't have any food triggers but one tiny glass of wine will have me pacing all night long so it's just not worth it for me

Pippins2

Twitcher profile image
Twitcher in reply to Pippins2

I too have read somewhere recently that dopamine receptors are a factor in RLS - I have just started the Dopamine diet (Tom Kerridge's) and will be happy to report back on whether or not I notice a difference in my RLS (and hopefully weight loss too)

Twitcher

involuntarydancer profile image
involuntarydancer in reply to Twitcher

Brilliant. Please do report back. I am very interested in the diet link but so far haven't found much of a correlation - except for wine - that is a certain trigger for me.

mylegsnme profile image
mylegsnme in reply to Twitcher

Any update Twitcher?

CMACH profile image
CMACH in reply to Pippins2

MSG is a big trigger for me and some sugary foods too. I also noticed if I stop eating anything processed even fruit sugar will trigger RLS.

Graham3196 profile image
Graham3196

I know of one research establishment that has been investigating this but the necessary controlled human trials is very expensive and they can't publish anything worthwhile without the statistical evidence to support it.

Ther other problem that many medical developers have is that it is not easy to get volunteers to test products for the human trials. Many new drugs never see the light of day because the scientists can't get enough subjects for proper trials. Many potential subjects argue that what the get might make them worse and that's fair.

If you think about it can you imagine testing a diet? How would you guarantee that your groups didn't cheat "just a little bit". You might have to jail them for 6 months!! Or have an independent auditor follow them around and video every thing they eat.

In the meantime we can conduct our very poor quality experiments on FODMAP and Low Chem diets. If you prove that they work for you then that might be all we have proved but that's the most important thing. If neither works for you then I am really sorry.

Bazzaar profile image
Bazzaar

Like others have mentioned, dietary triggers have poor evidence to back up claims.

Personally I find alcohol a very potent trigger. Not so caffeine. I think coffee has a reputation that mistakenly drags it into the group of triggers. Yes coffee abuse, like a dozen cups a day is bad. One or to can actually add to the effectiveness of treatments for rls.

Graham3196 profile image
Graham3196 in reply to Bazzaar

Hi I disagree that there is poor evidence to back up claims that diet doesn't affect RLS I dont know how much peer reviewed research there is on this As I mentioned above there is research that tends to support a positive relationship that in some cases diet promotes RLS but to convert that to published results is an expensive and a very difficult experiment to conduct.

A few people have experimented on themselves and report a reasonably high success rate. Do you have any evidence that there is no relationship between diet and RLS because this would be valuable to know so we could see how valid the experiments were.

Unfortunately a lot of negative reports are based on "I eat a healthy diet" which has nothing to do with a diet that promotes the symptoms of RLS. Are apples healthy? Is milk unhealthy?

There seems to be general agreement that RLS is a set of symptoms that are similar but have multiple causes. This suggests that there is only a portion of the RLS population that can eliminate symptoms by diet. This portion might be as high as 50% from my very poorly informed observations. I hope there is another group that can be relieved by Vitamin B1 and some other supplement ( I forget was it Folate?) because that's much easier than a diet. There are others who seem to be fixed forever by a simple medicine. Then there are tough nuts for whom nothing seems to work. These groups probably overlap and this all points to the need for a big budget attack on the problem. Perhaps these groups all have different causes.

Again, even with a big budget, how do you conduct verifiable diet tests where the results are invalid if the subjects chooses to eat outside the diet just a couple of times per week. Think about how many volunteers it would require to try just one diet

How can we promote that attack? If it was infectious then we could infect 50% of politicians and then we'd see some action. I cant understand why it seems that 5% of the population suffers yet 5% of doctors and researchers aren't all calling for funding for research??? If your doctor nods off to sleep during a consultation ask him if he has RLS

in reply to Graham3196

Could run an online survey of RLS sufferers, ask them if they have any triggers and what they are, and if they found any diets helpful. Wouldn’t cost a penny (just a lot of time). You could then use the results to fund a project where suffers keep a diary, a little more expensive as you would need research assistants to input the data, but still relatively cheap. Could publish both results. You could then, based on the two pilot studies, try and secure funding for an experimental study following sufferers on different diets. The results won’t be perfect because you are dealing with people who may, as Graham319 says, not tell the truth. However, no study is perfect in itself, but the larger the samples the greater the chance of approaching something like the truth. The final stage would be to triangulate the three studies – if we see similar results then we are onto something. Even if not perfect it will add to the slender evidence base and could lead onto more research.

Graham3196 profile image
Graham3196 in reply to

Interesting idea James. But "just a lot of time" equals a lot of money. I have been encouraging everyone in this forum and other places "to give a diet a go". (Sounds like a political slogan) So far, and from memory, on this forum and other forums I have seen feedback from 5 people plus me who have said they have tried the FODMAP diet and it worked for them. Quite a few others have said they modified their diet or eliminated some foods like high sugar foods to no avail.

A few tried the FODMAP diet or a similar and it didn't work. Perhaps many others tried the diet and it didn't work but they didnt tell anyone. So this approach doesn't guarantee compliance with even the diet they say they are following. The result is that the evidence that the diet was followed is that it worked but then it would be suspected that if the diet didn't work then the subject must have deviated from the diet. This is obviously not a valid nor a useful result. I guess the various nutrition labs have agreed to some protocols that time has proved to give an acceptable result.

If you have any influence over the direction of some finance then I know a research organisation that might be interested. The big problem is that there is no profit in confirming that someone else's diet works. Research is directed toward diseases that affect a large population and the cure you develop can be controlled and sold.

Invent a packet of pills for a million people who will vote for the government that will pay for the medicine, there's the way to keep the shareholders happy! But don't cure them - just control the symptoms while they keep paying.

This is the problem with repurposing existing medicines. There can be no profit. Only the Cubans do silly things like that and the rest of the world calls them crazy communists and hates them. As an aside I read recently that very early in the revolution Castro planned to make Cuba a leader in medical research and set up schools and universities that were directed to producing the scientists to make this happen. There are now fields where the Cubans are considered to be among the leaders. Pity RLS is not among them!!! Of course Hola is the extent of my Spanish so if there are any Spanish speaking medical experts out there please do your homework and tell us that they have solved RLS years ago.

One more whinge. Our governments follow a zero risk approach to the introduction of a new drug. The consequence of this is that it takes ten years and a billion dollars to bring a lifesaving drug to the market. In the meantime thousands of people die or have their lives ruined because of the disease. If I had some diseases I would beg to be allowed to sign a waiver to try a drug with a 20% chance of curing me and a 50% chance of making me worse. In the end the community would be better off and I might have a 20% chance of being cured whereas if I wait 10 years for the drug it will probably be too late. Many good drugs just don't see the light of day because no-one want to front up the billion dollars so some wonderful inventions remain as notes in someone's diary and never cure anyone. That my rant for this month. If you read this far thankyou.

in reply to Graham3196

I'm a social science researcher and its a lot of time, but academics have the time. But they need the interest. Government funding is also likely to be directed at higher profile issues. Thats why you need to start with small scale pilot studies to identify the problem and potential causal factors.

I'm gearing myself up for the FODMAP diet, will let you know how I get on when I eventually start! Looking into the diet, however, gives me hope. Its a diet developed by academics!

in reply to Bazzaar

True! I never drink..if I even have wine I'm up all night but my Hubby who's not RLS inflicted :) is the same, we never drink.

jane221288 profile image
jane221288

I had. Laser on my legs and improved alot. Once in awhile I get it back a little.

Graham3196 profile image
Graham3196 in reply to jane221288

What does "laser on my legs" involve? I have heard of lasers being used to remove hairs but I bet that doesn't cure RLS LOL

Eryl profile image
Eryl

I am convinced. I have eliminated my rls by avoiding sugar and E202. See my post today and check out siboinfo.com where rls is mentioned as an associated condition,

in reply to Eryl

I only eat sugar once a week and still have RLS all week, but agree those who eat a lot of sugar and carbs are setting them selves up for a restless day and night :) . I am interested in you supplementing Potassium as it's not recommended to do so, did you need special testing for this?

Eryl profile image
Eryl in reply to

Potassium is recommended for reducing hypertension, but where did I say that I supplement potassium? The only supplementation I take is that I have a daily banana, but I had rls before I started to eat bananas regularly.

in reply to Eryl

You said E202.

in reply to Eryl

banana has a very small percentage of the daily required Potassium in it, about 35o + mg when we need close to 3000. I eat over 2000 mg and still find no relief and is why I was asking when you said you use E202 - which is E202 Potassium Sorbate

in reply to

oh I see you avoid it..well that's confusing - hahaha!

Wonko_TheSane profile image
Wonko_TheSane

Digging out this thread super late - there is a researcher who found a connection between IBS and RLS. Name might have been Weinstein, if you are interested still I could search in my archives.

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