RLS and Lactose?

[Red81]

Hello Everyone,

It's been so good to discover this forum and read about everyone's struggle with RLS. I've had RLS since childhood (my parents remember me having to stand up in the car, or pulling over to let me walk around). But until now, it has been manageable to just get up and watch the movie standing up in the back of the theater or dealing with the long flights. However, staring in January of this year it became wickedly intense and I often tossed about in bed until I gave up and walked around the house. Many nights, I fell asleep exhausted at 4am and slept until 7am when I got up and went to work. With two kids (8 and 10) it quickly became unbearable to get through many consecutive days sleep deprived. My visit to the neurologist was disappointing- he prescribed Madopar which originally took care of the RLS until the augmentation came on. Then it was a complete nightmare with cork screw coiling like RLS and it moved into my arms and even the back of my head. I have since found a new GP who "gets" RLS at least to the extent that he said "I'm so sorry," when I explained the past months. My blood work shows that all is well EXCEPT for a Lactose intolerance. So I have had a Lactose free day and had a good night's sleep. I have those periodically and am ever so thankful when I do. Perhaps this will help. I will keep everyone posted. Also my doctor said that augmentations happen when the drugs contain dopamine. I will stay far, fat away from any medication involving dopamine! Good luck to everyone. If anyone else has made a connection between Lactose and RLS , please let me know. Thank you for this community.

[Red81]

Madopar is the name here in Switzerland/ Europe:

It is used in the management of Parkinson's disease in combination with L-DOPA (levodopa) as co-beneldopa (BAN), under the brand names Madopar in the UK and Prolopa in Canada, both made by Roche. Benserazide is not approved for use in the US; carbidopa is used instead for the same purpose. These combinations are also used for the treatment of restless legs syndrome.[2] (Wiki)

[Hidden]

Hi Red81, I have a similar story to yours - RLS in childhood, managing it by standing in the cinema, augmentation, etc. Been there done that and the T-shirt is now thread bare!

I developed a lactose intolerance due to ME but unfortunately haven't noticed it change my RLS - that is not to say it wont work for you, if I learned one thing in this journey is that we are all very different and what can work for one might not work for another. I'll keep my fingers crossed for you.

There are plenty of treatment options and DA's are not necessarily forbidden to you. I augmented on Mirapexin and had to stop. After going through a long period of hell I now use the Neupro patch along with Targinact. I learned on here that a good break away from them and they can be used again....but if you can manage without them it is better not to use them.

Plenty of options for drugs available at rlshelp.org and rls-help.co.uk.

Glad that things are going good for you, take care.

[Red81 in reply to Hidden]

Dear raffs,

Thank you! My doctor has ordered the patches and I am meant to pick those up this afternoon. I will keep them on hand just in case, but as you said I am really interested in beating this without this kind of heavy duty medication. Thank you for your feedback. What is ME?

[Hidden in reply to Red81]

ME is a real pain in the ass!

It is Myalgic Encephalomyelitis:

hfme.org/methemedicalfacts.htm

[Red81 in reply to Hidden]

Wow. I had never heard of it. I'm so sorry you have to deal with ME AND RLS! I hope it gets better for you.

[Hidden in reply to Red81]

Yeah its a pain. In the past I could distract myself or keep moving to ease the RLS, now I sort of lie there and roll about. My ability to cope has been hit hard and life is tough.

HOWEVER, I may be down but I'm not out. Still hoping for a miracle cure for both....fingers crossed.

[Graham3196]

I have also had RLS since childhood and it worsened with age. I have found that I am also lactose intolerant so I now use only lactose free milk.

I have experimented and I can accept about a half cup (125ml) per day without it causing RLS.

My dietician was surprised because she says that a very small fraction of people are lactose intolerant. I think she said 2% of the people with sleep problems but I might be wrong.

My body is also intolerant of a few other things but it sounds like you might have struck the jackpot. If your RLS is caused only by lactose it is a very easy substance to avoid if you are in Australia.

May you sleep soundly for many nights.

Cheers Graham

[Red81 in reply to Graham3196]

Thanks, Graham. You do have a connection then! I can't imagine that just one day of lactose free could be the miracle but I am most definitely keeping fingers crossed. My doctor said six weeks of NO LACTOSE including Lactose Free Products which have strains. Which explains why you are limited to 125ml. I am in Switzerland. There is cheese everywhere. And chocolate. I slept like a baby last night. I am so thankful!

[Graham3196 in reply to Red81]

That's wonderful There are some cheeses that are lactose free. These are aged but I don't know how long or anything about the necessary maturing process. Brie and Camembert are two that I was told are safe and experiments on me confirm that. When you have had five nights sleep in a row you can then try a little bit of one of these and then a bigger dose the next night and an even bigger dose on the third night. If you still sleep you can include these as part of your diet. The other cheese I can eat is a described as "strong and bitey" by the manufacturer. I think its chedder. Its just a normal commercial cheese. I haven't asked a manufacturer about lactose content.

Recently on the market here is lactose free sour cream for your potatoes and soup.

[Red81 in reply to Graham3196]

Thank you. I will keep you posted.

[Cathy12345 in reply to Graham3196]

This list very helpful. I shall try brie and camembert. Having given up lactose due to RLS, I only eat a lactofree cheddar cheese available in the UK, and really miss all the other cheeses I used to enjoy.

[Cathy12345]

I discovered the lactose connection through reading online, tried giving up milk and found it changed my life. I then discovered that one of my brothers was lactose intolerant but he does not have RLS, though other family members do. My lactose intolerance has got worse so that I cannot have any lactose at all because it brings on RLS. There are different degrees of lactose intolerance and some people can manage to have a small amount. My son has lactose intolerance mildly and at 20 he has time to develop RLS, which I did not get until I was over 50.

I also have an intolerance to barley, which brings on RLS.

I still get RLS occasionally and take medication when I do. Changes in temperature can bring it on as well as other things but cutting milk and barley from my diet has brought so much relief and it's worth reading all the labels as well as the inconvenience when eating out.

I have written about this on this forum before but was vilified with one man being so insulting, telling me that milk had nothing to do with RLS and that I didn't have RLS at all, that I stopped commenting or reading posts and when I came back decided to keep quiet about it.

I have related only my experiences and those of my family and know that I can't have lactose or barley because then I really suffer.

I hope this helps.

[MikeGpe]

Hi Red81,Today I didn’t have any RLS after waking up and it started after drinking a cup of milk and eating 2 sugared cookies. An hour ago RLS started to decrease. Not sure if this was caused by the milk or the cookies.