Bar of soap?: I recently read that a... - Restless Legs Syn...

Restless Legs Syndrome
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Bar of soap?

Manerva
Manerva

I recently read that a neurologist suggests placing a bar of soap under a fitted sheet as a remedy for RLS.

Her reason for this is that some soaps contain magnesium and magnesium is a natural muscle relaxant.

On the amusing side (i.e. if you find it amusing), I'm not sure what the signficance of the fitted sheet is. Maybe it's something to do with how the magnesium manages to get from the soap onto your legs. In which case it might be more effective for PLMD.

Another reason she gives is that anything is worth trying.

I note her"patient ratings" are at best "fair" only.

On the serious side, I've discovered there are various products advertised as "magnesium" soap.

However, it might be a good idea to wash with it rather than put it under a "fitted" sheet.

47 Replies
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OH FOR GOODNESS SAKE!!!!! How did someone like that get a qualification as a neurologist?..🙄

Legsandmore
Legsandmore in reply to Gmc54

Won it in a raffle maybe?

If soap worked, it would work applied DIRECT to skin and not in a sock in the bottom of the bed where the magic toe fairies use the love of the risen lord to waft the magnesium onto your legs!

I washed with soap for the majority of my childhood and had RLS and that was using soap all over my body, That neurologist should spell her name quack.

Please name & shame so we can avoid her.

Manerva
Manerva in reply to Joolsg

All I remember is Dr Ellen - - something. Cleveland clinic. I clicked "close all tabs" so fast it didn't really register.

Joolsg
Joolsg in reply to Manerva

Well there’s no chance of my coming across her thankfully- an ocean between us literally & figuratively. 😁

Manerva
Manerva in reply to Joolsg

It seems she's a bit of a washout.

Manerva
Manerva in reply to Joolsg

I got the name wrong, it's not Ellen but it is Cleveland, Ohio

raffs
raffs in reply to Manerva

Press and hold CTRL + H keys and that will open your browsing history, scroll down and find the link.

If you just open and look for the feathers you'll likely find her!!!

Manerva
Manerva in reply to raffs

Thanks for that it doesn't work on a Kindle which is what I usually use for this forum (hence all the typos)

Luckily I read the offending material on my laptop.

Here's a link

health.clevelandclinic.org/...

restlessstoz
restlessstoz in reply to Manerva

I cannot believe that!!! It's incredible that a neurologist would foster such rubbish! Mind you, I shouldn't be surprised! Experience has taught me that neurologists are not all they're quacked up to be. :)

I don’t like fitted sheets!

I take it then that said Neurologist doesn’t have RLS!

She needs to take her bar of soap and stick it .............

and l don’t mean under her bedsheet. On a serious note, it’s complete nonsense like this that only serves to further trivialise this debilitating condition.

The only thing l would agree with, is the point that people affected by this condition will get so desperate for relief that they will do and try anything, including quackery.

Sounds like a mail-order medical diploma.

I was told you put a bar of soap into a sock and wear the sock all night while in bed...

Manerva
Manerva in reply to kelirock

Wouldn't that hurt?

Gives meaning to the term soapamine agonist!

Raffs and I discussed this subject exhaustively a while back. I'm sure it can be retrieved in the archives.

For the record-- I had success for one night, many years ago. Then - zilch !

That raises the question of whether rls is all, or mostly, in the mind?? I was sceptical at the time, and was absolutely delighted it worked, and equally devastated the next night when it failed.😩

So ,there ye have it.

Manerva
Manerva in reply to Madlegs1

I'm clean out of any further ideas on this.

Perhaps if any ideas bubble up, I'll let you know.

TheDoDahMan
TheDoDahMan in reply to Manerva

Manerva, Please! (Haha)

On the basis that "I'll try anything", I did it. I bought the best, most natural soap I could find but of course it didn't work. Luckily, soap is a useful item and I used it in the shower.

A raw potato in the bed was also suggested but I called a halt on that one!

Manerva
Manerva in reply to lorrinet

When I was young and penniless but a smoker, I was so desperate that I used to collect fag ends and because the tobacco was dried out, I put it in a tin with pieces of potato peel to rehydrate it.

See how desperate nicotine addiction can make you!

lorrinet
lorrinet in reply to Manerva

Ha. I confess that I (and my friends) used to pick up dog-ends from the street and public transport, collect all the bits of tobacco left inside and make one or two cigarettes using papers from the tobacconist. How disgusting we are when we're young!

Manerva
Manerva in reply to lorrinet

I remember! We used to have one bath a week, Sunday, whether we needed it or not. I was lucky, being the smallest I was last in 🤔

TheDoDahMan
TheDoDahMan in reply to lorrinet

Hence the signs in Men's Rooms: "Please Don't Throw Cigarette Butts In The Urinals -- It Makes Them Hard To Light"!

Manerva
Manerva in reply to TheDoDahMan

arrrrrgh!

The soap thing has been around for years, (its raffs favourite subject ha ha ha ) There is no scientific evidence to why soap would work under your sheet. IF it did work and some swear by it, then its a placebo effect. The fact that a neuro was saying it, is worrying to say the least. Steer clear of that one.

Manerva
Manerva in reply to Elisse2

I'm steering!

Apologies if I gave the wrong impression

Elisse2
Elisse2 in reply to Manerva

No you were not giving the wrong impression Manera, i would have been most surprised if you were taking it seriously. I was just saying what i knew and thought of that flipping soap. :) :)

That sounds bizzare to me Manerva -where did you see that?-I cant see any neurologist subscribing to that. Im under a neurologist regularly for my epilepsy - bu I can pretty much guarantee that if I put that too her she ll say no to it-My suggestion t you is dont believe it -bear in mind thats only my suggestion -of course its entitely up to you ho you proceed going forward

Manerva
Manerva in reply to Sara_2611

Thanks.

I posted it because it amused me, I have no belief in it whatsover.

There are lots if people who do. It's a common myth.

Sorry if I gave the wrong impression.

Sara_2611
Sara_2611 in reply to Manerva

no problem dont apologise -i wasnt to know

Magnesium reason is really wrong. But the bar itself may work as any other object that you can feel and it thus draws off your attention from pure RLS madness of feeling nothing on your comfortable matress. I recently wrote about it. Since then I sleep on my Thera cane every night, helps tremendously.

Manerva
Manerva in reply to Alex2308

I made a mistake, this post wasn't intended to be taken seriously. For regular users of the forum, bar of soap is a joke.

There is some evidence that correcting a magnesium deficiency can reduce RLS symptoms and that it has some muscle relaxant properties. However, in that case it has to be ingested or applied, merely being in the vicinity is of no value.

I take your point about distraction, but in that case I can think of many ways of distraction more preferrable than soap.

Alex2308
Alex2308 in reply to Manerva

Yeah, exactly, almost any suitable object will do. I know about magnesium and I take it, seriously lol

It was quite clear to me you didn't support the soap idea Manerva. It was a quack idea we all enjoyed kicking into the long grass, which was better than kicking the dog in frustration. I previously assumed the soap was meant to be above the sheet, that it would fall out of the bed during the night, so when you got up you slipped on the soap, broke your leg, and then had much more pain to think about than your RLS. That's the only possible purpose I can think of with the stupid idea.

Manerva
Manerva in reply to sudokufan

Thanks.

I'm still trying to think of a suitable rejoinder to raffs "the magic toe fairies use the love of the risen lord to waft the magnesium onto your legs!"

I seem to recall there's something called "soap spirit ".

In what context did she say this?

Often professionals will discuss ‘old wives tales’ especially if one of their patients insist it works but; will usually tell you it is an old wives tale and there is no Clinical evidence but that anecdotal evidence suggests it works for some.

Or if they are asked about any alternative remedies.

Hidden
Hidden

Perhaps it has to be under a fitted sheet in case ‘one’ swallows it during the restless night?!

Manerva
Manerva in reply to Hidden

Good point, you have to keep these slippery bars of soap under control.

It can be dangerous.

Maybe the US and Russia need to develop soap as a weapon of mass destruction. Get rid of the A bombs.

It might be a better detergent to starting a mutually anihilating war than nuclear arms.

Furthermore, no radiactive fallout, just suds.

I get so angry when people who dont suffer tell me things like that, one friend suggested tying string around my legs. At the moment because I can work from home I am doing double shifts so I dont have to even try and get to sleep. I fell down stairs because I fell asleep stood up, and when people start telling me stupid things it angers me so much.

Manerva
Manerva in reply to WC13

Your anger is understandable.

It's the conduct of some doctors that angers me.

I have a new doctor that joined the surgery and within 3 months of seeing him he had me referred to a neurologist. I nearly cried. I dont think that you can understand it unless you have suffered with it. Ive been told its in my head and am imagining it by a doctor in the past. I very nearly hit him because at that point I was getting 15 minutes sleep in around every hour and a half approximately. Im hoping after speaking to this neurologist that they are going to try different things, she was lovely and I think this new doctor I have is the key for me as he seems to understand it.

That's great, your new doctor sounds significantly better than your previous one. Even if they;re not particularly knowledgeable about RLS, they will be very helpful and presumably willing to learn.

I hope you get to see the neurologist soon and find them helpful.

The advanatage of seeing a neurologist may be that he/she may be willing to prescribe an opiate for your RLS, if they're convinced that all first line medications have failed. and/or if they belive you will need an opoiate to heklp wirth ropinirole withdrawal. Otherwise, your GP could help you sort things out.

At the moment it seems likely that you're suffering augmentation due to the high dose of ropinirole you're taking.

If you;ve been prescribed an effective dose of pregabalin i,e, at least 150mg and up to 400mg and given it at least 3 - 4 weeks to start fully working, then you could start to reduce the ropinirole. In addition, it's not going to completely effective if you're suffering augmentation. The augmentatioin will have to subside first, as you reduce the ropinirole. There's no point switching to gabapentin, especially prematurely, it's not as potent.

Whatever your doctor says or what any neurologist may say, withdrawing from ropinirole needs to be done very slowly, that's very slowly. Unfortunately you will not get the full benefit of the pregabalin until you have compleyely withdrawn because of withdrawal effects.

An opiate would help with withdrawal effects, a sleeping aid e.g. zopiclone should help with sleeplessness. Your GP won;t prescfribe an ooiate, but can prescibe zopiclone or a benzodiazepine.

I guess you are now putting a lot of hope on seeing a neurologist and expecting a solution to your RLS issues. I hope this works out OK, but I have to warn you that you may be disappointed and wouldn;t want you to feel let down.

I expect to be listened to by a doctor and shown compassion and sympathy. I expect a doctor to consider both any information I give them and my preferences. I also expect them to give me all the information I need, everything that's important to me, and not just what they think is important.

I don't expect them to know everything about RLS or in fact everything about anything. I have taught specialists things they didn't previously know and consider that knowing about any health issue you have for yourself along with ideas in how to manage it are important for a good outcome and think not wirth telling.

If a doctor tells me I'm imagining something or, as I have been told, "that cannot be possibly be" or "there's no such thing" I consider that abusive and morally unacceptable, even if it were true.

I will be honest he is the first doctor that takes me seriously and has taken action to help me. I have had doctors in the past that have been lovely but simply know nothing about the condition. In regards to the Ropinerol I am currently working from home and have had to get into a routine where I am working for 2 full days, meaning working through the night because I cannot get to sleep properly even with the Ropinerol on some nights. So in order to get work done and earn enough money Ive had to get into that routine for the moment. Currently I am having to stand at my breakfast bar in the kitchen as its the right height for me to type at lol. So Im going twice a week without taking the Ropinerol at the moment, so hopefully that should help me ween off them. I should add that it makes me feel so physically sick that I cannot take it if im staying awake. I should also add that since ive had my iron regulated and also been on the correct diabetes medication the edge has been taken off the rls. I mean when I say edge I mean that at one point it got so bad not even 5mg of ropinerol was working so high sugars were making it worse for me. I will let you know what happens when I start takin the Pregablin. Im so excited that a doctor is actually taking me seriously, but that may change if they cant do anything lol

Manerva
Manerva in reply to WC13

You must be very careful weaning off ropinirole, the way you seem to be doing it is NOT recommended. If you miss a dose, you are in danger of suffering severe withdrawal effects within 24 hours. I'm surprised you get away with this.

It's probably at least making your situation worse, rather than better.

When I was taking a DA and missed a dose I had severe symptoms within a few hours and NO sleep at all.

I suggest the following -

Establish the doseage of pregabalin first.

Then -

Continue to take the ropinirole every day but reduce the dose in steps of 0.5mg and reduce once every 3 - 4 weeks. You'll have to cut the tabllets up to do this.

It's highly likely that at each cut, your symptoms get worse, this is withdrawal effects.

If withdrawal effects lessen j less than 3 - 4 weeks then you can cut the dose after 2 weeks. I wouldn't suggest any less than this.

If after cutting by 0.5 symptoms get considerably worse, then cut in steps of 0.25mg.

As the dose gets lower e.g around 1 to 1.5 mg it may get harder to reduce as withdrawal effects may get worse.

Withdrawal effects may be at their worst 24 - 48 hours after taking the final dose.

In the final stages poeple find taking an opiate and/or a sleeping tablet help with the withdrawal. Some people take a holiday from work.

I was very very lucky, I foujd as I decerased the dose of the DA I was taking, symptoms subsided, I slept better and had little or no withdrawal effects. However, I weaned off over ten months.

A lot of people seem to give up weaning off a dopamine agonist becasue they find their symptoms get worse. They either don't realise that this is temporary withdrawal effects which will fade or they try too fast and the effects are too severe.

It doesnt have that effect on me at all. I had problems getting it at one point and all that happens is my rls appears at night and im on and off with it from then on. What I have discovered is now my diabetes is almost under control that it has really taken the edge off it. I have to work in the way I am or I would not be able to pay my bills. When I try and sleep in a regular every night way I just cant and get so little sleep I cannot get up in a morning, so staying up all night is how I work and skip the day of ropinerol and it really doesnt affect me any more than before I started taking it. for me high sugar affects me massively and nothing works at all. The doctor I was seeing before wanted to try me on something else but cant remember what it was.... although we have established most doctors dont understand it.... she just told me to stop taking the ropinerol completely. I only take it at nights I dont have it during the day as the side effects are too bad, but those side effects I have had right from the beginning. So I have to wait and take it before Im going to bed :( Anyway, will let you know how I get on when I get my hands on this other medication. The neurologist told me to take them alongside each other and she did say to wean off them. But will let you know how I get on

My suggestion still applies, if you withdraw from ropinirole in the way you suggest then you may suffer severe withdrawal at some point

One possible explanation for what currently happens when you miss a dose is that because the amount you're taking is so high it stays in your system longer.

Sleeplessness is a withdrawal symptom.

Missing a dose a couple of times a week isn't really a withdrawal plan, you have to reduce the dose, not just spread it out.

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