RLS started on ropinirole. Does it help??

There is a diswcussion on this forum called "'RLS and diet"' that has some details but briefly the FODMAP diet has been developed by Monash university in Melbourne Australia and is supported at London Bridge Hospital.   Google ""FODMAP Monash Melbourne""  and ""FODMAP London hospital"" to get lots of links.

Fodmaps are types of sugars that some people have problems digesting properly.   The diets were developed for people with irritable bowel syndrome.

I have RLS and I noticed a connection between indigestion and RLS.  I tried a gluten free diet and I had a significant improvement but many lapses when I couldn't see that I had eaten gluten but I still had bad times.   I then found out from Monash that it was probable that gluten intolerance had been misunderstood.    It suggested that there is no midpoint in gluten intolerance - you are either celiac or your problem is not with gluten specifically.    There is this group of sugars that mess people up and many of the foods that contain these sugars also contain gluten.  Hence the confusion.

So I have been experimenting with the FODMAP diet and found it has been a great improvement.  I still have bad nights and some RLS but its nothing lkike what it was 12 months ago.   Unfortunately I am not a good test subject as I have some other problems with my legs that produce similar symptoms.  I sometimes find it hard to be sure if the feeling in my legs is arthritus, sciatica or RLS.    This is a remarkable improvement from the old days when my legs were thrashing around and I had to keep walking until 5 or 6 am.   

I would encourage anyone with RLS to read the other post and try the FODMAP diet.   There is no downside to trying it out except that your choice of foods is limited for a month or so.  The idea is that you go on a strict FODMAP diet and then if your problem is alleviated you start to introduce each sugar group and see if it affects you.     I think you need to get help from a dietician so you are sure you have it right.  I haven't been able to do this reintroduction yet partly because I haven't had a really involved dietician and every time I've tried its made it worse.   I think you need to ask the dietician if they have experience with irritable bowel syndrome and FODMAP diets before you make an appointment.    That might just mean that I have reactions to every sugar group so I have to avoid them all.   I hope not.  

You will make mistakes and be pounished for them but don't give up.   For example a week ago I had a salad that was made with rocket rather than iceberg lettuce,   I had a bad night and then realised that I am only allowed a limited types of lettuce.   Another night I ate a gluten free pizza forgetting that the mozarella cheese was not allowed and I was punished.   Sometimes I think I deliberately forget because everyone else is eating food I'd like but I know its not worth it.    Of course sometimes the resturant doesn't know what's in their food but they tell you its wheat free or whatever you want to hear.

I also cut out caffiene and that helped when the RLS was quite bad.  I am also taking extra iron (100mg per day) in the hope that will encourage extra dopamine generation in my brain.   Before I was on the diet I found that the iron made a definite improvement for a month or so.   I didn't have a measured iron deficiency before taking the supplement but I have been told it wont hurt me.

I have seen a neurologist who told me there was nothing that could be done except drugs that made me nauseus or too sleepy during the day.   He was sarcastic at the suggestion that diet might help.  So this theory is not based on medical advice.   

I need some expert advice on the amount of allowable food you can eat.   My curretn understanding is that almost everything contains some FODMAPS so you can eat reasonable amounts of low FODMAP foods but you can overeat them as well.   For example I started eating 4 or 5 bababas per day becaus ethey are easy.   teh RLS returned and I think I was just overdoing one food type.   Now I try to eat a bit of many things and it seems to be better..Some foods, like grapes, you are only allowed a small quantity (three cherries) and I would rather just take that as zero.

I am also part of an trial group for an experiment run by Monash to investigate the possible benefit of some excercises on RLS.   It shows some promise but I'll report to the forum when the trial is complete.

Good luck

If yoiu have more questions please ask.

I have replied but its gone for moderation.   If its deleted I will send another

I can't put links here so I suggest you search for ""Fodmaps monash melbourne"" and you should get a good explanation from the original researchers..

That's great news.    Be careful of the type of alcohol because beer has gluten and I'm not sure about whiskey.    Rum seems to be OK but I dont drink more than i rum and coke.

If your in Melbourne then there is a brand of bread Alpine that is marked FODMAO friendly.   I have tried it and at first got a bit carried away but a siongle slice might be allowable.   They have a few varieties and I think their Spelt upsets me.

Please let us know if you get a week with no bad nights!

Good Luck

Cheers

Graham

When you know that you are only having one drink you can let your head go and buy up-market.

I look forward to hearing from you

Graham

We all have our fingers crossed for you

Cheers

Graham

Its cheap and only takes 8 weeks or so to see if it solves your problem.