RLS

[Valrob47]

Hi everybody i have just been told about the soap under the sheet and been reading everyone's comments . I have not taken my medication tonight and i am going to give it a try . So fingers crossed x

[beady3]

The best thing for soap is in the wash basin x

[Madlegs1 in reply to beady3]

Spoil sport!

Raffs and I were all agog and breath baited awaiting the mornings' news.😎

[martino]

I wonder whether the type of soap is important. I wouldn’t want to waste my money!

[Hidden]

Don't forget to get the 'special' RLS soap that is aerodynamically designed to fit better in your bed, (I sh1t you not) with lavender!!!!

Personally speaking I find a delicate blend of Head and Shoulders and Fairy Liquid with just a smidgeon of Swarfega is just as effective.

Hope it works for you, I really do, but I leave with one question - I have had RLS my entire life, the fist twenty odd years of which I used soap to wash not just my legs but my whole body and still suffered with RLS. Why would soap work better in your bed than directly on your skin considering one of the snake oil merchants selling special RLS soap claimed it worked because the scent molecules got on your legs by having it in the bed?

I would link to the site for people to see the ludicrous claims however I would be afraid I would be encouraging people to try it so wont, but if people do go down this route, (and lets face it there are few atheists in fox holes), please don't get suckered into buying expensive soap that is no different, (other than being flatter), from regular soap.

[Hidden]

I f soap works for anyone its a placebo effect and that is all, no other reason it can work.

[Graham3196 in reply to Hidden]

Just a few points.

Doesn't saying its a placebo effect imply that RLS is all in the mind? If I cut my finger off there are not many placebos that will make it better.

If it is a placebo effect and you get a few nights sleep wasn't it worth the cost of a bar of soap which is still available for its original purpose?

In reality, we know so little about RLS that just perhaps 8 hours exposure to the gases given off by a bar of ordinary soap might work?

Some people say it helped them. Unless they are known to be fraudulent we need a test of a reasonable number of RLS victims to participate in a comparative study. Say 100 people get a bar of soap and 100 people get a piece of plastic that looks like a bar of soap. It might even be that its not the soap that matters but just having something for your feet to play with.

I have been told by a specialist who worked in a sleep clinic as an expert on RLS that diet cannot cause or be related to RLS. Therefore, he said, I dont suffer from RLS but some other unknown condition. Of course I meet the standard diagnostic criteria but that counted less to him than his "knowledge" of possible causes of RLS.

Like everything we need to base our decisions on evidence rather than opinion but this is limited by available resources so we have to apply some expert judgement to decide on what seems to be a possibility.

It appears that we are about to conduct a preliminary trial of the hypothesis that a bar of soap can offer some people relief from RLS. If we get 100 people to try it and 10 of them report that they had 3 nights relief from RLS then is that enough to ask some research lab to do a properly controlled study of the virtue of soap? A masters or PhD student might find it worthwhile.

[FLAME43 in reply to Graham3196]

I like this post, your points are so worthwhile. Thank you for this intelligent synopsis

[Retren in reply to FLAME43]

Rafts as to soap I use a soap in the bath which purports to contain magnesium the substance so many swear by. other than being very difficult to lather I have still RLS every day and often night as well so do not place much credence on the efficacy of soap.besides which surely the mattress box spring and so forth block any vapors or what ever is supposed to help?

[Hidden in reply to Graham3196]

I claim I washed in soap for over 20 years and had RLS during that time, not just lying it in my bed - topical application!

Might be worth a punt if we got ourselves organised - all getting the same bar of cheap soap out of the supermarket and see how it goes using the soap en masse to see how many get benefit. I've never used the soap but if we had a large test group I would.

But I wont be throwing out me Trarginact!

[FLAME43 in reply to Hidden]

maybe so, and i have thought of that, but i get relief in my soap filled bed (not a cure) I just think we should care about what RLS sufferers do, and not mock us a stupid and gullible, but stick together, It works for me many a time, you should all be pleased with that.some of us are desperate enough to try most things. BE KIND

[Graham3196 in reply to FLAME43]

How many forum members would join us in a small experiment? I wouldn't recommend anyone neglecting their medication for the duration of the experiment so I think we are looking for people who are suffering some symptoms whether or not they are medicating.

If we proceed I suggest we would overkill it and put two bars of soap in the bed, use ordinary supermarket soap as Raffs suggests and report back after one week. Come on folks lets test it with one hundred subjects.

We need to be careful because I think some "soaps" are not traditional soap but some other chemical mix.

If it shows promise after say two weeks I can just drink a glass and a half of milk for a couple of days and that should induce symptoms. Maybe I will even eat some raisin toast with too much butter. What an excuse to find out what life used to be like!

Cheers

Graham

[FLAME43 in reply to Graham3196]

does milk induce RLS, and you mentioned butter, both of which i like, should i be avoiding them

[Graham3196 in reply to FLAME43]

One thing we really believe in about RLS is that there is a huge variation in what helps and what doesn't between different victims.

For some people there are foods that trigger RLS. For me most of those foods contain FODMAPs hence I am on a low FODMAP diet. There are other chemicals that some people dont tolerate. The rigorous way to determine what turns your RLS on is to try an elimination diet where you eat a very small variety of foods which are chosen because few people have intolerances. Rice, water, bananas. If your RLS is triggered by a food intolerance there is a good chance that you will not experience the symptoms after you have been on the diet for some time. Now if you have no symptoms for several weeks you can start re-introducing some food groups, one group at the time, into your diet and begin designing a diet that suits your RLS and hopefully is healthy. The elimination diet is not healthy because of the lack of variation and range of foods.

In my case one of the triggers is lactose. I now drink lactose free milk and ice cream but I normally avoid other dairy products. Since Christmas, I have accidently allowed myself to have a bit too much butter on my low FODMAP bread and I have also allowed myself more than my usual two slices of low fodmap bread. I have now had a couple of nights of mild RLS (lost about an hour's sleep) so I am on a warning.

So the answer to your question is that Lactose can cause RLS to trigger in some people but there could be lots of other things you are eating that cause it. Or you might not be triggered by food at all.

One way to find out is to eat according to the FODMAP diet for three months and if you have no RLS you are among the lucky ones who have found your problem. If you get a measurable improvement then you can hope that food triggers it but you haven't eliminated all of your personal triggers so you can tighten things up even further with an other diet variation.

If you need further information about the low Fodmap diet let me know and I will send it. I can also provide information about the Royal Prince Alfred Hospital's low chemical diet if you need it.

By the way, FODMAPS are sensitive to the dose you have so a half cup of milk is ok for me but a cup and a half is not. Somewhere in between, there is a threshold but I try to avoid the whole problem by drinking lactose-free milk or almond milk if you can stand the taste.

[involuntarydancer in reply to Graham3196]

It sounds like fun. Maybe you should start a specific thread? You might attract more people for the experiment.

Would be very interesting to see what happened to your rls if you abandoned your rigorous regime also!

[Graham3196 in reply to involuntarydancer]

I am not that brave!!!! What if I abandoned the diet and the RLS returned and then I could not get it back under control? As it is I have little lapses - some accidental and some by deliberate decision- and then suffer. Right now I am suffering a little bit but I dont know what I have done wrong. I find I get a bit complacent after a few weeks of no problem and then add a bit of butter to my toast and perhaps add an extra slice of low FODMAP bread. They all add up and I have to snap back to lots of rice and fish, Uncle Toby's Oats and mountains of rice cakes with cheese. On the good side lots of steak and fish as well.

[DicCarlson]

It will work if you burn a frog on a moonless night!

[Hidden in reply to DicCarlson]

I thought it was a toad at the full moon?

[Graham3196 in reply to Hidden]

at the full moon but it has to be in a grave yard.

[involuntarydancer in reply to Graham3196]

Sorry, just to be clear: frog, moonless, non-graveyard (pref); toad, full moon graveyard only?

[Suabbott]

Really hope the soap works for you, it has for many people, didn't work for me but good luck.

[camcorn]

Nope!!! didn't work for me. left it in the bed for about a week too! xxxx

[FLAME43]

Hi. i have put 3 bars under my sheet at the top by the pillows, i find when my RLS does not abate, i lay flat on my stomach and spread my legs apart and it really does help................I know it is hard to believe, but believing is the power of treatments we want to try. I know it helps so i don't care what people think

[John_naylor]

Sorry, to but when people suggest magnets and soap in the bed it rather annoys me as it trivialises a serious disease. Perhaps I should lighten up but at times when I am getting only 2 hours sleep and really suffering I can be rather intolerant with such ideas.

[Hidden in reply to John_naylor]

Take a walk into an oncology ward and suggest soap as a treatment, see what happens!

[FLAME43 in reply to John_naylor]

MY DESPERATION FOR RELIEF IS NOT TRIVIAL, MY RLS IS AS SERIOUS AS ANY ONES AND THAT IS WHY I WILL TRY WHAT COMES MY WAY, AND AS IS COMMENTED BELOW IT WORKS FOR ME AND NOT MANY OTHER PEOPLE AT ALL,

[Hidden]

This isnt the only place for people who have RLS, there are many RLS groups on FB, one of those groups has 7,000 members i have not seen more than a handful of people who say it worked for them, and more who said they tried it and it didnt work. There is NOTHING about soap that has any scientific reason why it would work for RLS. unless its a placebo effect. I have nothing against a placebo effect.

[gingerf21]

I tried leaving Irish Spring soap in my bed. It worked for me for a while, then it didn't. It was never enough. Maybe you have to swap it out every few days or so, I don't know, but I understand it does work for some. I certainly don't understand the reason it works when it actually does work.

[Valrob47]

Hi was ok first night but i think i still had medication in my system 2nd night didnt work but was worth a try

[Fredanderson]

Never works, an old wives tale