RLS and diet

[Graham3196]

Many people find a relationshp between RLS and diet. I have found that my RLS symptoms are greatly relieved by following a strict diet. There are several other people who have followed a diet and found relief. The big advantage is that there are no drugs and almost no expense.

I have had RLS for 55 years that I can remember. It was always a nuisance but it became really bad and life threatening about 20 years ago. I had a sympathetic doctor who helped with some drugs. I found that all the drugs I tried caused unacceptable side effects so I had to find something else. I finished up with a group at Monash University in Melbourne, Australia that had developed a diet for irritable bowel syndrome sufferers. This seemed like a good start so I tried it and my RLS symptoms improved immensely. I had been sleeping from about 5am to 7am but suddenly i was waking up during the night and walking around for 20 to 40 minutes and going back to sleep for another couple of hours. Other people have said they just slept all night. This is called the FODMAP diet and is mentioned in many posts on this and some other forums.

Very recently I spoke to another dietician who suggested a low chemical diet. The local experts on this diet are called Shepard Works and the original knowledge was developed in Sydney, Australia by the Royal Prince Alfred Hospital. They haven't promoted it widely because it hasnt been properly tested. I decided to try this about three weeks ago with some support from a dietician at Shepard Works. I should explain that the chemicals you are avoiding are not necessarily man-made but generated within the food. For example a green banana is good but a ripe banana has developed some chemical that you might not tolerate. Rare beef is fine but well done may not be. Its all very confusing but there is science in the design of the diet and in its application.

So two days of low-chem and nothing happened, two more days and I had vigorous RLS and zero sleep and then ..... 16 consecutive nights of uninterrupted sleep. (other than trips to the toilet of course) I then "challenged" my body with a half tin of pears and it failed so I lost some sleep the next three nights and now all is well again and I slept last three nights.

Both diets are described as exclusion diets. This means that you exclude as much as you can from your diet and see if you get better. If you are better then you try to re-introduce food again by taking a small amount one day and increasing the amount regularly. Some things will work - I am now able to drink cows milk with lactose still in it. Somethings dont work like my pears so you cross them off your future diet and look for the next victory. You hope that the eventual outcome will be that there are just a few foods or foodgroups that you can't eat and a banquet of foods that dont worry you so you can sleep fat and comfortable until morning every night.

I'm sure this wont work for everyone with RLS because nothing seems universal with this disease but you might be one of the lucky ones like me.

One very important thing is NO CHEATING Not even one thin wafer or just a spoonful of this or that. Coffee and tea are decaf. Coffee is apparently better than tea.

Its apparently normal for the low chem diet to work in a couple of weeks but the FODMAP diet took about 10 or 12 weeks to work for me.

Discuss this with your doctor to make sure your body can take the strain of this rigorous diet. If your doctor says a diet can't help RLS then find a better doctor. I paid a large amount of money to a neurosurgeon so he could tell me that RLS was not related to diet.

If you need any more information or links please feel free to communicate with me here and I will share anything I know.

Good Luck

[Madlegs1]

Hi Graham- thanks for rhe post.

You might be interested in my reply to Lois Tonya above re oxalate foods.

I would be interested in whether they match foods that people find bothersome when reintroduced in that diet regime.

Keep up the good work.

The more I read about this affliction, the more incredible and entangled it becomes. Food , iron , medications and psychology all intertwined.

I love it! 😈

[Hidden in reply to Madlegs1]

Madlegs did your doc ever decide whether you have high ferritin levels in the face of low iron?

[Madlegs1 in reply to Hidden]

Not quite sure what you mean?

But in general my blood irons have tended to be on the low side of normal ( only marginally) while the ferritin has been sky high since the operation.

My next step , when I get back , is fo do a few phlebs and see if I become really anaemic. That would tend to confirm that inflammation is the driving factor.

Not sure if that's what you are looking for ?😶

Thanks for the interest.

[Hidden in reply to Madlegs1]

Since blood irons are low does that mean you can try the ferrous bisglycinate?

[Madlegs1 in reply to Hidden]

Sounds right.. Theres a Hepcidin fella in there somewhere who regulates the iron transference within the body. I am careful not to do anything that might upset him- and they don't seem to know too much about his habits or even to test for him.

I'll do the phlebs first and see how things go.

Keep you posted!

[Hidden in reply to Madlegs1]

So true. Hepcidin can be a pain but the "cool" factor is so high that I too try to give it due respect. The iron really knocks me out and I would love to take it every night but I hold off for When RLS pays a visit.

[apbnab]

Hi, I have suffered with RLS for years and have just been taken off my medication as it was causing liver problems. I am very interested in learning about the FODMAP det if you have any info.

[Graham3196 in reply to apbnab]

I can tell you good websites to learn from which is better than me trying to tell you what to do. I suggest that you talk to your doctor before embarking on either diet because they might be unsuitable for you if you have any other health conditions.

I mentioned two diets above that I have been using. Initially I started with the FODMAP diet which worked well but left a bit to be desired. Just recently I changed to the "Low Chemical Diet" The FODMAP diet is a bit less strenuous and has been known to work for RLS. The Low Chemical diet is like a restricted version of the FODMAP diet and is hard work but so far I have had a few weeks of zero RLS for the first time since I was about 15 years old.

Note that both diets are not specifically for RLS, The FODMAP diet is for irritable bowel syndrome (IBS) The low chemical diet is for people with intolerance to some chemicals. A lot of people automatically think of man-made chemicals but some of the chemicals are just natural, For example green bananas are OK but when they ripen they develop some chemicals.

There are several sources of information about the FODMAP diet on the internet. Please note that there are a few sources that that seem more generous than the official sites and some of them seem to apply the name FODMAP without justification. The original site was Monash university but they now sell an App for you phone. I haven't used that because I had an old phone but a friend told me it was very good. I think it costs about 10 Australian dollars. ( med.monash.edu/cecs/gastro/... )

These sites refer to the FODMAP diet as a means of controlling the symptoms of IBS but several people have found that it benefits their RLS. The people responsible for the low chem diet say they were aware that it helped some people with RLS but they couldn't publish anything about that because they hadn't done sufficient testing.

I have just visited the Kings College London web site and it they are now also selling an App so I expect the really free information might be getting scarcer than when I started.

Its important to know that FODMAP testing of foods is expensive so many foods are excluded simply because no one has tested them. This makes it very desirable to have the latest information so your choice of food is as wide as possible. This means the App from Monash or Kings College is probably good value. I apologise if I misled anyone by saying it was free but we are only talking about a few pounds per year if you already have a phone. It used to be free. If this is a problem let me know and I will see if I can do something. So I recommend you buy the App. See Kings College web site kcl.ac.uk/lsm/research/divi...

I took a very careful approach to the foods that I ate. For example I was allowed 5cm of celery (from memory) so I decided I couldn't be bothered with anything that was so close to a limit and ignored celery altogether. In the big picture it was a trivial sacrifice along with a few other marginal things. I also went wrong the other way, Bananas were allowed so whacko! I had 5 bananas per day and found that I was supposed to be sensible. Bananas are such a handy food but even some allowed foods can be taken in excess. Of course I now know that eating ripe bananas might not have been a good idea but because of chemicals and nothing to do with FODMAPs. So I cut my bananas to one a day and it was better.

The Kings College London site refers to Guy’s and St Thomas’ NHS Trust in London. I think they provide a consulting service of dieticians at a price.

The more I look now the more I find people are wanting to make a dollar out of this which is a change over the last two years. However here is a site that you can get a free list of preferred foods and some other information. ibsfree.net/high-or-low

Again I recomend a dietician to help if you can find a good one. Always ask if they are qualified in FODMAP diets and see if their reply indicates that they know something about the FODMAP

The only other thing I would say is that if you are going to put up with a FODMAP diet then make sure you follow it exactly and dont allow your self any liberties. If you are like me if I cheat today I feel the effects tomorrow and the day after and it gets really hard to associate the effects and the cause so its easy to get lost.

It took me about 12 weeks before the FODMAP diet really worked although I noticed some improvement earlier. Others ave said they had no more RLS after the first day. Unfortunately I am sure there are some who have tried it and it did nothing for them.

I haven't said much about the low chem diet. This is partly because the FODMAP diet is less strenuous and so far has worked 100% for the few RLS people I know who have tried it. I have only been on the Low Chem diet for a few weeks and so its a bit hard to recommend it too much until I am sure I have not found any problems. It has been spectacularly successful for me. I am working with a dietician in Melbourne Australia. See her again on 3Mar17. If you are interested see friendlierfood.com.au/rpah-... and of course, they have a few books for sale. Research has to be paid for by someone I guess. Unlike FODMAP the low chem diet has not been exported much from Australia. You might be able to arrange a cyber consultation over Skype or similar with either my dietician or a dietician at the Royal Prince Alfred Hospital in Sydney. If you want to try this I will make some inquiries if you like. Depending on where you are in the world the timing might not be very good but if you have RLS you are probably only walking around and around at 3 am anyway.

Good Luck

Graham

[slickchipster]

Glad you found the answer for you...It is encouraging--will try anything....thanks!

[Graham3196 in reply to slickchipster]

Let me know if you need any help or further information.

[Wendy1]

I think I might give this a try. I am not happy with being on Ropinirole although only 1 mg daily. Eventually I may suffer augmentation and will have nothing else to control the RLS. Medication may have diluted the RLS I suppose although it has certainly not 'cured' it! I suffered IBS some years ago and got it under control by diet. The food list I was given then is quite different to the Fodmap diet so I am going to have to make lots of changes.

Fingers crossed!

[Graham3196 in reply to Wendy1]

Go for it I hope it helps you as it has me. I have mentioned elsewhere in the forum that the FODMAP diet gave me about 70 to 80% improvement and I have achieved the remaining improvement by going to a low chemical diet developed by the Royal Prince Alfred Hospital in Sydney Australia. A lot of people report success with FODMAP but I mention the other as a next resort in case you need it. Again its cheap and sort of easy to do provided your general health is good enough to stand the diet. Its really worth asking your doctor if it's safe and then getting support from a dietician. Remember that both diets are supposed to be temporary and once you are clear of the symptoms then you start to re-introduce foods in a well planned way The ultimate hope is that you find there are only a few foods that you have to avoid.

Good luck If there is anything I can do to help just let me know.

[Wendy1 in reply to Graham3196]

Thanks for the info and wishes! When I have recovered from a current chest infection I will be able to start.

[Graham3196 in reply to Wendy1]

I look forward to hearing about your success!