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 ?

37 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..

  • 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.

  • 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?

  • 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!

  • 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.

  • 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 :)

  • Maybe the salt on the crisps helps some people.

  • 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 :-)

  • 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.

  • sorted and stinky Elisse :D :D

  • Good job we keep our sense of humour. :)

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

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

  • 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.

  • 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!

  • 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.

  • 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

  • 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.

  • 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!

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