RLS and FODMAP

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
graham3196
Posts: 5
Joined: Wed Jan 15, 2014 7:47 pm

RLS and FODMAP

Postby graham3196 » Fri Jun 12, 2015 9:54 pm

I have had RLS for 50 years. Ten years ago it became serious.
The Monash University in Australia developed a treatment that has now been applied around the world with considerable success.
I dont want to hear from anyone who wants to tell me its irrelevant or nonsense. It has helped every RLS victim I know of who has tried it. I don't expect it will work for everyone but it worked for me and some others so its got to be worth 8 weeks to see if it will help you. I have reacted badly to the medicines I have been prescribed so now I take no medicines, just a few supplements like iron which used to help but I may not need anymore.
It's only for people who have serious RLS because others wont bother to apply it thoroughly and it will fail so they will complain that it doesn't work.

The process is called the FODMAP diet and it was developed to relieve the symptoms of irritable bowel syndrome. For some reason the diet seems to work for RLS. I have found a long time ago that there was some relationship between food and RLS but I didn't know what it was. This diet is designed to avoid four sugars - not ordinary sucrose but other sugars found in a wide variety of foods. The idea is that you go on the diet for a period of about 8 weeks so that you can verify that something in those four sugars are the cause of your problem. Then you re-introduce foods one at the time and see what happens. If you are lucky you will find that just one sugar is causing your problems. If you are less lucky you might find that you have to avoid all four sugars. Whatever happens it seems you are stuck with that result and from then on you have to modify your diet. It is probable that you will find that you can tolerate a small amount of the sugars you are intolerant to. For example I can drink one cup of coffee per day with ordinary milk and have to use lactose free milk for any other tea or coffee.
I hear many people say that they can't do without onions or garlic or something. If that's you then don't bother starting this diet because it won't work and you will have to waste time writing in and complaining. I have said that it probably doesn't work for everyone.
The diet was developed by Monash university in Australia but in the US I think Stanford is the appropriate authority. See their web site by typing Stanford FODMAP into google. You can get some free information at Stanford. You can buy a good book and a phone App online from Monash.
You might also go to the UK forum of patient.co.uk and read the conversation "RLS and Diet"
Be aware that many doctors will dismiss this as a useless exercise but you should insist insist that you want to give it a go. Its only 8 weeks and its harmless and cheap. You really need to visit a dietician because the diet is not easy. Just keep reminding yourself what its like to have bad RLS and how undesirable most of the drugs are.
I have heard many people complain about their RLS and then say that they couldn't stick to this diet because they can't live without onions or garlic or something. If this is you, dont bother to start the diet because it wont work. If you have bad RLS you will gladly trade onions apples pears avocado for 8 hours of sleep every night and the delight of being able to use planes trains automobiles and theatres without problems
Please let me know if you try the diet, If you have any questions please feel free to ask.
Good Luck
Graham

ViewsAskew
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Location: Los Angeles

Re: RLS and FODMAP

Postby ViewsAskew » Fri Jun 12, 2015 10:07 pm

There are posts here about others using diets similar to FODMAP - and FODMAP has been discussed. The results are mixed. SO glad it is helping you and hope it continues to.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

graham3196
Posts: 5
Joined: Wed Jan 15, 2014 7:47 pm

Re: RLS and FODMAP

Postby graham3196 » Fri Jun 12, 2015 10:31 pm

Thanks
What do you mean by similar to FODMAP? Do they eliminate the four sugars and something extra?

ViewsAskew
Moderator
Posts: 15817
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: RLS and FODMAP

Postby ViewsAskew » Sat Jun 13, 2015 6:04 pm

There are several diets similar to FODMAP. Different doctors and scientists have differing ideas about these sugars and how to approach this, so there are different diets. I posted a link recently where a doctor discusses them and his take on which diet is most effective and why. If you read some recent posts in this section about diet, you'll likely find more info. Hope that helps.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

graham3196
Posts: 5
Joined: Wed Jan 15, 2014 7:47 pm

Re: RLS and FODMAP

Postby graham3196 » Sun Jun 14, 2015 12:31 am

Thanks I will look into it.
I'm in Australia so I found the Monash diet by personal contact when following up on gluten free diets. The gluten free diet was a half way help, though it seemed like heaven at the time. I am surprised that other work has been done relating RLS to FODMAP like diets. I have been soundly abused for suggesting that diet is important to RLS by medical experts. When I have said "I'm an example" I am accused of not having "real" RLS despite that they have just agreed to the diagnosis. In Australia there is little knowledge of anything that helps in bad cases and they just prescribe the latest drugs and sleeping pills even though they know it probably wont work. I had bad reactions to the drugs so I had to find my own cure. Sounds like I might have been lucky to have stumbled on the most suitable (for me) FODMAP diet in the Monash version.
I would recommend anyone who has tried a different version of this diet without success to invest 8 weeks in the Monash version. You might get lucky. And the opposite applies if Monash doesn't work for you. Somewhere in there our medical researchers should be able to find a solution. There is probably one or two more food ingredients that can upset RLS.
I think the problem is that there is not much money in finding a diet that cures compared to a tablet.

Thanks again for your help

ViewsAskew
Moderator
Posts: 15817
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: RLS and FODMAP

Postby ViewsAskew » Sun Jun 14, 2015 6:17 am

I don't know of any medical folks suggesting such diets! Maybe functional MDs, but not regular MDs. I've had some other issues and as such have been gluten, dairy, corn, soy, sugar, nut, and egg free at various times along with other diets. My husband has celiac, so I'm GF at home at all times. It's never helped me at all to be GF - or any other free! But, my main issue was always PLMs - since a toddler. RLS/WED was not a big deal for me - even though I've had it since I was a teen - until more recently.

Several people here have had mild to moderate success with Wahl's and other diets. I think one person was able to reduce meds by about 50%. Another person swears that it's all about inflammation and following/using a diet and supplements that reduces inflammation is the only option and will help everyone. I've tried that, too...without any success. I continue to use anti-inflammatory supplements for other reasons, however.

Diet is one of the harder things for people to try, I think. It's more than the money involved _ though that is likely part of it. We get bombarded in so many ways and we often feel we've given up so much that we just can't give up our favorite foods, too. When I spent a couple years sugar free (I mean no sugar except naturally occurring in fresh fruit - no catsup, no sauces, no honey, etc), at first I thought I'd never make it! It is hard to give up things that can make you feel happy, safe, even loved!

We don't know what causes RLS/WED or PLMs yet - I'm definitely not sure that diet will help everyone. That's another thing that makes it hard for a regular doctor to suggest anything except meds - there is no research, so they can't prove anything, and since we don't have a cause, they can't even draw an anecdotal relationship. We know there are at least 5 or 6 genes involved and that there are definite changes in the brain, and a few other bits and pieces, but that's about it! From people's reports here, there are enough fairly different variations for me to think it's highly unlikely one thing will work for everyone.

I am relatively sure that we all just all aren't able - for various reasons - to try the same things. If someone feels medication is best, I'm all for it. If they believe no medication is the answer - that's great, too. We all have to be happy and live with our decisions - and few of us see or experience the world the same way. Some of us use one thing for awhile, only to switch later on.

Here's hoping we all have what we need when we need it and can find a way to get some sleep.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

graham3196
Posts: 5
Joined: Wed Jan 15, 2014 7:47 pm

Re: RLS and FODMAP

Postby graham3196 » Sun Jun 14, 2015 10:36 am

Hi Viewsaskew.
I'm not selling anything and I can understand that you feel you've tried everything. If you have looked at the FODMAP diet you will not see anything expensive in it.
I totally agree that there is unlikely to be one cure for every RLS. The only experience I have to offer is me and three other people from another forum who tried it with success. One lady from Australia had immediate relief the day she started the diet and 5 weeks later wrote that she had zero RLS since that day. The others were doing well quite soon but I haven't heard any longer term reports. I have been 99% fixed for about 6 months. I have also read and been told that many IBS victims suffer from RLS and in many cases they lose the RLS when they go on the FODMAP diet. Even for IBS sufferers the benefit of the diet is far from perfect I think something like 60% of IBS sufferers have no symptoms, 20% partial cure and 20% no improvement so why would we expect the RLS to be any better. But if it works for you its fantastic. Likewise if medical science produces something that works for you with tolerable side effects thats also fantastic.
Good Luck
Graham


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