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Desperate for advice

Posted , 14 users are following.

rob58951
rob58951

Hi guys, I'm hoping someone on here can help me, I started having RLS about 7 or 8 years ago, it was mild to begin with, I would have bouts that lasted for a few weeks at a time, then it would calm down and i would have a few weeks off, then it would start again. I was given Quinine Sulphate by my Doctor and this worked at first. Gradually over the years my RLS has got worse, I now have it every night and recently I've started having the symptoms during the day, It's only in my legs at the moment, I am on Roprinole which does work as long as I take it an hour before I sleep and it lasts for about 5 hours, but I still have to get up in the night and do leg stretching exercises.

One of the problems I have is side effects, the sickness and drowsiness. I work shifts as a Firefighter it's a sleeping shift, but I can't take the tablets at night as I would not be able to respond to "shouts" so I tend to walk around all night,

one thing that helps for me is sleeping with a very light duvet, or no duvet at all, in a cold room.

I don't know how everyone else feels, but I'm at my wits end, I haven't slept in the same bed as my wife for over a year, it's unfair on her to have me fidgeting around all night. I've never felt so depressed.

Does anyone know if there's likely to be a cure in the near future ? or if there are any effective treatments other than roprinole that don't have side effects ? 

Any help would be greatly appreciated.

Rob.

 

1 like, 23 replies

23 Replies

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  • sharon_17397
    sharon_17397 rob58951

    Posted

    I use to suffer from RLS but now I rarely ever experience it. I'm not a medical professional - nor do I play one on TV - but for what's it worth - this is what has works for me . . . 

    Diet - low carb, high fat, medium protein. keto diet basiscally.  I do not consume refined sugar. Well, very rarely and if I do, I try not to have it in the afternoon or evening.

    Exercise:  I walk a lot!

    Supplements: A high quality magnesium supplement early evening

    Homeopathic Remedy:  Not needed most nights but if I have had sugar I use this remedy.  _____

    Stretch: I stretch out my calf muscles for 2 minutes each leg right before bed. This works really well. If I wake up in the night with restless legs, I just stretch and restless legs are gone! 

    I also take a tylenol if I feel RLS coming on. It seems to help even though there is no pain attached to my RLS. It just seems to control the restless feeling. Strange.

    My quality of sleep is also substantially better if I refrain from TV or using any device for an hour before bed.

    Good luck everyone! 

     

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  • Indya
    Indya rob58951

    Posted

    Hi Rob,

    I hope you have found some relief since your last post 3 months ago. I suffered from RLS for years, and much like you I was at my wits end. I have only one kidney so the medications doctors wanted to put me on was not an option. I went to an acupuncturist who told me that in most cases, RLS is just a fancy word for "magnesium deficiency." Many people are magnesium deficient, although it is difficult to test for because our body does not store it for longer than 24 hours. He recommended I take a high quality Magnesium supplement, and if you are a tea drinker, you can drink Magnesium tea. I take Magnesium-Potasium Chelates by Krebs. I feel the difference immediately (within the hour) and I have not had a bout of RLS since (it has been 3 years). Sleep Minerals II is also great for taking before bed and there are some medical articles written on it for its effectiveness. However, I think you may find that you will get relief with just a really high quality magnesium supplement 250 mg - 500 mg, but make sure to ask your doctor to ensure that it will not interact with any other medications you may be on. To my knowledge, Magnesium is not known to interact with any medications and is completely safe. 

  • Lindieloo
    Lindieloo rob58951

    Posted

    Hi Rob, you sound like I feel!!Im on ropinirole as well, now on 3m like u I'm in spare room most of the time!! I get it in arms as well! I'm outside through the night trying to push feet into hard steps, driving me mad! I was at doc the other day and was told no cure! Getting blood done next week to check thyroid as I'm on meds for that!

    i know how you feel!! I'm looking at clock waiting to take ripinirole, does help for a few hours!

     

  • mary47679
    mary47679 rob58951

    Posted

    Well, what works for me is tramadol.  As one reader said, there's no pain attached to RLS but for some reason a painkiller (not NSAID) works.  You can go to work even though you've taken it (try it first though).  Cold water on the legs before bed works too.  I found sleeping on my side or stomach, with feet hanging over the end of the bed, also works.  There are some leg compression boots that inflate sequentially, and those work too but are cumbersome to put on and take off.  You can get them from a medical supplier or look online.  Wearing support hose during the day can help also.
  • Dimity67
    Dimity67 rob58951

    Posted

    Have you tried ice packs on your feet when going to bed.?I have had rls for most of my life, it runs in the family, I have taken sleeping tab Zolpidem for years. Have just had a knee replacement and the rls has gone through the roof! I find sugar, heat, and too much exercise make it worse. I feel for you, until you suffer from it it's impossible to explain. There are periods of remission so don't despair.
  • rose44372
    rose44372 rob58951

    Posted

    Hi Rob

    The best solution for me was Blackstrap Molases without the sugar.Dissolve a tablespoon in a cup of boiling water and  drink.Sometimes one tablespoon not enough then take another one. It stops the legs within 15 minutes.I take befor I go to bed at 11pm sometimes I wake up at 3am or 2h30 and just take another tablespoon , brush my teeth and back to bed to sleep. According to a certain website by a Dr , he wrote that restless legs are caused by inflammation of the body. So you should try and curb coffe intake.I do  not take coffee after twopm and limit myself to 2 cups of coffee a day.So caffiene also plays a role.The other super help is Vitamin E , that must be tha natural D  alpha tocopherol /vitamin E this takes a bout 30 min to work.I think it will differ from person to person.a nd then there is the Radical CAL MAG  and D3 , but you must also take the K2 without the K2 the calcium will only be absorbed in the arteries, while K2 transfers it out of the arteries to the Bone where it is needed.Not using K2 can cause blocked arteries and strokes and heart attacks which the GP's dont tell us.

    HOpe this helps.

    blessings

    Rose44372

    • Udon
      Udon rose44372

      Posted

      Everyone on here should try both.  I wish I had some right now.  I will have some tomorrow.  I rarely get RLS anymore.  I only get it when I take a trigger medication or if I eat too much refined foods.  But sometimes I just have to take an antihistamine or an antacid and that will set off the RLS.  I take an iron tablet and that takes care of it within an hour but the molasses sounds amazing.  I had no idea how nutritious it is.  It has all of the substances that are supposed to be good for RLS.  In addition to iron, it has b6, choline, potassium, and magnesium and calcium.  And I assume it enters the bloodstream almost immediately thus giving almost immediate, albeit temporary relief.   

      So I bought something called citi-choline because I read it helps to shore up dopamine receptors.  And RLSers have shoddy receptors.  I was convinced it would work the way the iron does but it did not.  No harm no foul. 

      I will buy and try the molasses as soon as I have a wicked bout of it.  I will lie there and wait for that bizarre urge to move my legs to disappear.  That's what the iron does.  But usually I am asleep before I can feel that sensation disappear.

      I will report back to you soon. If that doesn't work it's on to the vitamin e.  Iron is not the best supplement in the world to take and my iron stores are quite high.  I would prefer the molasses or vitamin e. 

       

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