Anyone out there similar to me? - Restless Legs Syn...

Restless Legs Syndrome
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Anyone out there similar to me?


Hi, I'm new to this website. I'm a 44yr old female sufferer of RLS. I have had it for about 5 yrs I think! I take 3 Pramipexole tabs on a night. But lately it seems to have got worse. I was reading things on the Internet tonight about things that are meant to help, two of which I am trying for the first time - a bar of soap under the sheet! and a hot water bottle. No joy so far as I'm still awake and can't get any ease. Has anyone else tried this?

Is anyone out there still awake ?

46 Replies

Hello, I'm still awake!

I've never heard of a bar of soap under the sheet, I can't see how it would make any difference. But if it does, let us know!

One thing that does help me is a cold water bottle, keeping my feet cold. I use an old Coke bottle. There is something comforting in the cold smoothness.

You've been taking Pramipexole for a long time now, it's probably time to change your meds.,but I'm too sleepy to explain why.

I hope you get some sleep. If you're still awake in half an hour, make yourself go downstairs and prepare all the veg for tomorrow's lunch, and any other job you can think of. Then you won't have wasted your time tonight, and you'll have less to do tomorrow..

Hidden in reply to patchworker

the soap thing is a load of codswallop sean it on various wedsite and its a load of rubbish, same as the compression socks, and quinine, waste of time, and more to the point, waste of money

Hi RottieMam! The soap thing must be an old wives tale; how could it have any basis in fact? The hot/cold water bottle idea seems to work, or, at least, relieve the RLS; interesting! Your pramipexole may not be working because you simply need to up the dose (I've gone from three tabs to five over the last two years). Either that or you've got augmentation, where the meds have stopped working and started making the condition worse. Go see your GP and get them to help. All the best, Tpebop, Kent, Britain.

I had my worst night ever last night!

But, what I forgot to mention, is that I'm currently undergoing Chemotherapy, and I had a session yesterday!

Hence, the hot water bottle or the soap failed to work!

Never mind I think I'm going to have to see if my legs will let me have an afternoon nap - lol!

Thanks for your comments, I think I am going to also give the cold water bottle a try aswell.

TEAH35 in reply to RottieMam

Yes that certainly was a major omission. I gather that if you're having chemo, that you are suffering from some for what cancer. You poor dear, as if you didn't have enough to cope with.

I find if you leave your legs uncovered and let them cool right down to almost freezing it really helps. I am on Ropinirole 4 mg slow release at midday and another 2 mg slow release at 4pm it generally works for me. Some days for some unknown reason it doesn't but generally it helps a lot.

The soap bar theory is that it releases negative ions. Tried it and it didn't work. As Gonzo 123 jut said leaving your legs uncovered and getting them really cold does help a bit. The last 2 nights i have taken ZMA its a zinc, Magnesium and B6 supplement i bought in Holland and Barrett. I had great sleep with little RLS. Could be coincidence?

Hidden in reply to HaideeJane

Don't know about the soap but I read somewhere that magnesium oil works a treat. Just bought it but will let you know how I get on

Hi RottieMam ,I am on pramipexole , i take 4 round about 6 pm but found i was still up through the night with rsl , the doc suggested 2 co codamol 30 / 500 at night and it is unbelievable the difference it has made to me, worth a try Rottiemam

I cannot believe how many people have suggested the soap thing! I even read about it in a newspaper article. I suspect if we thought sleeping with a hyena would help we'd all be trying it. I tried the soap thing out of desperation but alas, had no success either. It probably is an old wives tale, and since I'm an old wife, I had hope :-) I use the Neupro patch and have a great deal of success with that. Tonite it's just thunderstorms and a panicky dog that are keeping me up. I suggest trying something else if what you're doing isn't working & wish you luck!

Hidden in reply to CathyS

i so wish we could tick "like" on these comments :)


The soap thing has been around for years, people say they try a certain brand and it works. I suspect its the placebo effect... when we are desperate i think we will try almost anything. I belong to several forums, and i hear the most outrageous remedies that people reckon works for them... a certain potato chip, (thats crisps for us in the UK) one man said "cured" his RLS.

Hidden in reply to Hidden

ha ha yes i saw this one to, think it was on the foundation wed site, i laughed so much, how guilable do they think we are, hope they are walkers, my favorite :)

patchworker in reply to Hidden

Maybe the salt on the crisps helps some people.

CathyS in reply to Hidden

OMG POTATO CHIPS!!!! That's one I've never heard. My husband thinks sex is the answer. And while it IS true I have never had RLS in the process, AND he falls asleep easily after, HE DOESN'T HAVE RLS!! So, while he sleeps I'll eat potato chips, Maybe while walking around the house. Or soaking in the tub....

Sweet dreams :-)

Hidden in reply to CathyS

Now dont got stuffing bags and bags of potato chips..!! And it had to be a certain brand according to what the man was saying, cant remember the name, but it would have been one your side of the pond... Also, what about this remedy, i read on the the foundation fb page. Pickle juice...!!!

So, with the soap, potato chips, and pickle juice...we should all be sorted....!!! LOL.

Hidden in reply to Hidden

sorted and stinky Elisse :D :D

Hidden in reply to Hidden

Good job we keep our sense of humour. :)

Hidden in reply to Hidden

good morning Elisse, it certainly is :) hope you slept

Hidden in reply to CathyS

no crisps in the bathtub, makes them go soggy :)

Hidden in reply to Hidden

No crisps in the bathtub, but the soap can be used...LOL.

I have always found a warm bath helps, especially when I am jumpy at night. What mg.'s are your pramapexole? I take .25mg of mirapex around the supper hour and then another .25mg around 9:00or 10:00 p.m. Then 2 zopiclone about half-hour before bed and right now that is working.

Good luck to you. Like the rest of us, it is a continuum of trial and error and frustrating to boot. Be warned that dopamine agonist drugs like pramapexole, mirapex, requip, Sinnimet can cause Obsessive compulsive disorder that leads in some cases to gambling. If you feel yourself feeling any urgency to drink more alcohol, party more, shop excessively or gamble compulsively get off the drug ASAP! THis is factual. To be aware of this side-affect can protect you. I am involved in a Canada Wide class action lawsuit because of what it did to my life.

If you google mirapex which is the generic for pramapexole or vise

versa and gambling you will find lot of info on it.

TEAH35 in reply to Rubylane25

Ohh what I would give to be able to have a warm bath! ! could probably get in, but I doubt that getting out would be much of a picnic.

Welcome to the forum!

To reiterate what everyone else said, the bar of soap thing is a myth. There's all kinds of crazy "natural" remedies out there that don't actually work (rubbing oatmeal on your feet, putting magnets in your pillow case, etc.).

As for your RLS getting worse lately, that seems to be the foregone conclusion with the meds you're on. Sooner or later, the dopamine agonists (requip, ropinirole, mirapex, pramapexole, sinnimet, etc.) cause augmentation and you'll need a narcotic (tramadol, vicodin, oxycodone, etc.) to reverse the effects. Good luck!

you might like to try Magnesium Sulphate (2 tabs dissolve under tongue 3 times a day with cocodamol at last dose). I found this worked magically for me and no other meds. I discovered this remedy when surfing for advice during my last and worst round of RLS. (after back op). I am now free (virtually) of RLS. I pray it doesn't return like the sworst sufferers on this site - mine is intermittent and months or years go by with no RLS, so I'm one of the luckier ones. Good Luck.

Thanks again everyone for all your help! I think a trip back to the doctors to discuss it further is wot I need. Like people have suggested, maybe a change of tablet!

I've come to bed now for a rest cos I'm shattered!

I had a great sleep last night at last.

I took my usual leg tablets, but I also took 2 x Dihydracodeine tabs, & I left my legs out of the covers. It seemed to have worked, so I'm trying the same tonight - fingers crossed!

TEAH35 in reply to RottieMam

Do you guys just have drugs like Dihydracodeine (which sounds pretty heavy to me) on hand at home?

Iron Deficiency as a cause of RLS (

The significance of low iron in causing RLS is outlined in the segment on Causes of Restless Legs Syndrome. Since the 1950, it has been known that iron therapy even without the presence of anemia has benefits for RLS symptoms. Studies have shown a strong relation between body iron stores as determined by serum ferritin and the severity of the RLS symptoms. A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy (325 mg ferrous sulphate twice a day on an empty stomach) on average improved RLS symptom after 3 months. A randomized, double-blind study of the effects of giving a 1000 mg of iron in a pint of fluid through a vein in the arm (intravenously) versus no iron, found that nearly 50% of patients had moderate or greater improvement in their symptoms. A little over 20% of those in the study had a near complete resolution of their RLS symptoms with the iron infusion. All of the patients in this study had normal hemoglobins (i.e., not anemic) and had a range of serum ferritin that were mostly in the normal range.

Hidden in reply to ldq1997

Iron deficiency it not the cause of RLS for all of us. Many of us have taken iron to get our ferritin levels up and it hasnt made a darn bit of difference.

I think in the old days lavender was a common soap. Lavender has ingrediants in it that are soothing. My grandma always carried a lavender handkerchief in the pocket of her dress. So that is probably the tale behind that. I find a warm not hot bath can calm my legs for awhile. A friend of mine swears by her electric blanket helping but really for most of us who have it bad....and I hate to say this....drugs is the only answer.

Chemotherapy is well known as a cause for aggravation of various conditions. A bar of soap will not make an iota of difference ;-). Talking to your Consultant will! I had RLS really badly following appendiscetomy in 1991 - awful. For months. Nothing relieved it apart from trying to sleep with legs elevated. Then I found that eating bananas daily relieved it within a week. PHEW!

Some herbs do assist health. Lavender - brought over when the Romans paid the UK a visit ;-) along with rosemary and other garden herbs have various uses. Lavender is supposedly soothing though I don't find it so. Both that and rosemary were spread across kitchen floors in the Middle Ages to help alleviate smells ..........

A doctor who has a column, Dr. Gott,who is published in several papers, actually suggested the soap for leg cramps, though, not RLS. He has changed that from "leg cramps and RLS" to just "leg cramps "over the years ;) (long time ago) Like Elisse said, maybe it is the placebo effect. I have a chemist friend that has severe RLS, and he explained (tongue in cheek) that there is no way the "molecules of the soap are going to jump onto your legs, and if they could they would not know what to do anyway." :) First long ago, it was Ivory Soap, the Irish Spring, then Dial, the kind to use changes every few years. ;) Yes, an old wives' tale that started out as a "cure" for leg cramps, not RLS. I know some people who swear by it, and while there is nothing wrong with a placebo effect., soap is not going help a neurological disease, in my humble opinion. ;) Someone from a company that was doing an RLS survey and promised "gift" after we did it, so I said what the heck? ;) I did the survey and the gift was an actual box of lavender Bed Soap, that is the name, and it is long and flat to fit in your bed better. Aroma therapy, yes, but treatment for RLS, no. I cannot believe someone is making money off of flatter soap. ;) But, I have seen stranger things. good luck to all, soap or not. lol

Gabapentin 600mg I take 3 about an hour before bedtime works as well as anything I have tried except for Opiates

Been there and done that with the soap! I think if it helps anyone, it has to be a placebo effect. A chemist friend of mine, who used to work in a soap factory,and says there is no way the "the little molecules will jump from the soap to your legs! ;) Let's just say that many people I know have tried it, and maybe 5 or 6 of them said the soap trick worked for them. Nothing wrong with placebo effects, but a bar of soap is not going to take care of severe RLS in any way. Mild RLS, maybe, and the placebo effect can be very strong for some people. RLS is neurological, and soap does not fix neurons. One thing is your sheets will smell nice! ;) The hot water bottle ( I use heating pads) should help relax you a bit.

Hiya ive tried hot water bottles,tens machine etc even t 2 tramadol I take at nite not helping my rls anymore I hardly sleep n had this for 7 years n gettin worse wish my doctor would help me more bout it

Pippins2 in reply to cazchalmers

Hi cazchalmers,If your Tramadol is no longer helping you there are lots more meds available to try.Maybe you could change doctors ,is there another one you could see? If not you could print off some information about restless legs and take it in to show your doctor as many don't know much about this condition.RLS-Uk has a good website with reputable information. Another idea would be to ask your doctor to refer you to a Neurologist. Try to make your doctor understand how this is affecting your life and how little sleep you are getting.Good luck let us know how you go on.Check on that website to make sure you are not on any medication that could make your RLS worse .Ask your doctor to check your ferratin iron as it needs to be around 70 for RLS sufferers which is way higher than what is considered normal

I've read a lot about using a corned beef sandwich instead of soap! Seems to work, and you get a late night snack.

TEAH35 in reply to Toofartoot

A rather smelly corned beef sandwich I should imagine.

My dad is having good luck with Calcium magnesium an hour before bedtime takes a few days to get in your system but works after a few doses!

TEAH35 in reply to Annie601

Just wondering .... how severe a case of RLS does your father have? Because when I was first diagnosed, magnesium and calcium was the very first treatment that I had. it only worked for about 4 months I think, and then it was straight into the heavy stuff eg Madopar was the first cab off the rank.

I tried the soap under my sheets it didn't work. I got so frustrated I ended up shoving the soap up my ass. Forgot about the RLS for a few minutes but it came back.

hi RLSufferer am sorry about this but hope you didnt get to much lather and blow to many bubbles lol

I read that sleeping with your knees slightly bent stops the leg cramps. It seems to work for me.

Yes RottieMam, I am still up, but only just. I'm not sure where you're from but I live down under and the time zone is very different to the rest of the world ... to be more accurate I think it's the opposite. The time here is 4am on Saturday morning.

As I have been affected with this torturous disease since childhood (I am now 64 years old), I don't think it would be too facetious for me to assume that I have had more experience in dealing with restless legs than you have.

It has been mentioned previously about having the soap under your blankets with you, but as I have never tried it I cannot give you any opinion.

I was diagnosed at age 48 and until that day I seriously thought I was the only person on this earth that suffered from this horrific afliction. And I have no hesitation or shame in advising you that my immediate reaction to this contradictive, albeit welcomed news, was indeed anger. I was so furious I wanted to hit someone, which is a statement and 1/2, considering I'm definitely not an aggressive person. I was so mad to the degree of furious. I simply could not fathom how I could've been allowed to suffer for so many years and not one clinician, anytime, ever mentioned the words Restless Legs Syndrome.

It is definitely a progressive disease, and I can bare witness to the fact that that is 100% true.

I take many drugs to help with combatting this disease, and I do realise and definitely do not (and never will, take the peace these drugs afford me for granted).

I cannot, will not, and have no intentions of ever going off the current, (miracle drugs ... in my opinion), that I am currently taking now.

And for your information I have no hesitation in advising you of the names of these drugs

For the unbearable pain that I experience in my legs, (which BTW is not only in my legs .... my entire body, from my toes to the top of my head is affected). I take a drug called Madopar which is also used by Parkinson's patients. And to control the hideous symptoms of RLS I take the miracle drug called Sifrol. (In your part of the world I believe it is known as Mirapex). This drug controls my symptoms 100% without fail, but please heed my warning, the side effects are extremely weird and also quite dangerous and are very difficult to keep under control. I've always said on this site that I can control the side effects but there is no way on God's green Earth that I would have any chance of controlling the symptoms of restless legs

I believe you have a very long road ahead of you my dear. Please pay attention to the advice, that is freely given, in a completely non- judgemental way, an understanding and caring manner, by those who have gone before you. They are the highly experienced many other sufferers of restless legs on this wonderful site.

Welcome and good luck

I apologise for the length of my reply, but am of the opinion that it indeed all had to be said.

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