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  3. Restless Legs Syndrome

Things I have tried and how they went.

Posted , 27 users are following.

graham9772
graham9772

I suggest a discussion where we limit ourselves to as brief as possible statement of "I did this and the result was...."   the reader can then look up other discussions a sort of brief index or summary.  

It might be good if the forum administrator can pin it to the top of the lists.

I will start with my next post.

 

4 likes, 46 replies

46 Replies

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  • mattdh
    mattdh graham9772

    Posted

    For some relief from restless legs syndrome I find that I need to exercise my legs during the day also for me a couple of 75mg enteric coated Aspirins seem to give me relief at night.
    • bridle17
      bridle17 mattdh

      Posted

      Being active in the day definitely helps - cycling or running seem good. Sitting in front of a computer, especially before bed seems to make it worse

       

  • rcoa1998
    rcoa1998 graham9772

    Posted

    My dad is 89 with RLS. Thinking a lazyboy chair would give him sleeping options. I could be really off base about RLS. Comments?
  • rcoa1998
    rcoa1998 graham9772

    Posted

    My dad is 89 with RLS. Thinking a lazyboy chair would give him sleeping options. I could be really off base about RLS.
  • cassioneandonly
    cassioneandonly graham9772

    Posted

    Hi Graham,

    Thank you for starting this thread. Not sure that I will be much help but happy to give my experiences.

    I haven't yet tried any prescription drugs for my RLS. I take magnesium and iron, neither of which has seemed to help. I try to keep active. I also take cod liver oil and vitamin b12. For a time I tried 5-htp before bed which also didn't seem to make any difference. I have had little luck with anything I have tried if I'm honest.

    The only thing which helped slightly was cannibis, and I'm not sure that it improved my restless legs at all but only made it easier for me to fall back to sleep after an episode. I wouldn't need much at all and effects seem to last for a day or two. I'm not recommending it and don't like to use this method too much as I worry about the long term effects. I only want to be healthy and feed my body with goodness.

    I am looking forward to trying the FODMAP diet and hope and pray that it makes some kind of difference. However i don't suffer with IBS so I'm not sure, does it only provide benefit to those who's restless legs may be linked with IBS?

    • graham9772
      graham9772 cassioneandonly

      Posted

      Sorry for this ridicously late reply.   I hope everything is going wondefully and my reply is now irrelavent.

      I dont think I have had any IBS but the FODMAP diet has worked for me.     I have combined it with a low chem diet from Royal Prince Alfred Hospital in Sydney Australia and this seemd to put the finishing touch so when I follow the diets rigourously I have no RLS symptoms.     I have found that I am human and sometimes I slip from the wagon and eat something I shouldn't.

      The good news is that thewre seems to be a cumulative efffect by which I mean that if I am strict for a week or two and then "lapse" I frequently escape punishment.      In one case I went to Thailand for 10 days and abandoned any attemot to stick to the diet other than avoiding onion and garlic when it was easy to ignore.    I ate wonderful food and slept like a .....   When I returned home I had a few nights of problems but that just confuses me further.

      I hope things are going well for you

      Cheers

      Graham

  • derek06706
    derek06706 graham9772

    Posted

    I had two years of very little sleep with daytime misery before being tested and diagnosed with rls.  Tramadol worked well for more than a year and then I needed to increase the dose to 100mg, which still works.  However, I wanted to have an alternative and was put on pramepexole, which upset my digestive system very badly.  Now I am using rotigotine patches which, so far, are working very well - as effective as tramadol in fact.
  • MME97
    MME97 graham9772

    Posted

    Elavil - no effect

    Cloneazepam - worked for a short while, but had to continually increase so I stopped

    Neurontin - worked for a few years, but eventually quit working

    Requip - worked for a short while, but eventually quit working

    Gabapentin - worked for a short while but eventually quit working

    Horizant 600 mg, then 900 mg, with 3 mg of Requip - worked well, but the side effects were horrendous....headaches, nausea, vomitting, didn't care about anything, couldn't remember full conversations I had.  BUT no restless legs!

    NOW - Neupro 3 mg.  - works MOST of the time if I change the patch at the same time everyday, however it itches and leaves slight burn marks.

  • Moaningminnie
    Moaningminnie graham9772

    Posted

    Hi i have tried pramaproxile (sorry cant spell it) and ropinrole both at seperate times they worked for a bit then the rls kicked back in 😯

    I am currently taking gabapentin 600mg 3 times a day and its helped me so much and still is. At first the neurologist put me on 200mg 3 times a day but this didnt work.

    Neurologist says i have over active

    nerves.

    If i forget to take one rls kicks straight back in.

    Im 36 and have suffered bad for the past 4 years. Will it ever go?

  • ratfancy
    ratfancy graham9772

    Posted

    I'm having good luck with tramadol (which I had to suggest to my neuro).

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    Format: Abstract

    Send toJ Clin Psychiatry. 1999 Apr;60(4):241-4.Treatment of restless legs syndrome with tramadol: an open study.Lauerma H1, Markkula J.Author information

    Abstract

    BACKGROUND:

    Tramadol is a central analgesic that seems to have fewer side effects and a lower abuse potential than classical opioids. Since the treatment of restless legs syndrome (RLS) with levodopa or classical opioids is problematic, new treatment possibilities would be valuable.

    METHOD:

    We treated 12 patients who fulfilled at least the minimal diagnostic criteria proposed by the International Restless Legs Syndrome Study Group as well as the criteria proposed by Gibb and Lees, some of them treatment resistant or prone to side effects of previous medications, with 50 to 150 mg of tramadol per day in an open study. The follow-up lasted from 15 to 24 months.

    RESULTS:

    Ten patients reported clear amelioration and 1 reported slight amelioration of their symptoms, while 1 reported no effect. Tramadol was described to be the most effective treatment and free of side effects when compared with several other treatments. No major tolerance against treatment effect emerged among those who needed only a single evening dose.

    CONCLUSION:

    Compared with other treatments for RLS, tramadol seems to be superior in some cases, possibly because of its unique pharmacodynamic profile. Controlled studies are needed. Meanwhile, we believe that tramadol should be considered before other opioids are prescribed. We recommend intermittent treatment and careful monitoring.

  • kathy00483
    kathy00483 graham9772

    Posted

    2 most effective things for me, soaking in a hot bath and using a bean bag as follows:  I make my bean bags with flannel and the cover with fleece.  8 inches by 20 inches, fill with approximately 6 cups of winter red hard wheat berries (so when laying flat about 1 inch high).  Heat in microwave for 2-3 minutes, take out and move around to mix wheat berries, and heat another 2-3 minutes.  Lie in bed face down with rear end up (looking cute:-), and bag at back of knees, between both legs, touching thighs and calfs.  Instant relief.  The wheat berries will stay warm for up to 30 minutes. Adjust legs to what is comfortable over time. 
  • kelly90944
    kelly90944 graham9772

    Posted

    Hi . I suffered with restless leg syndrome on and off for years . Even during my pregnancies which wasnt fun. I tried quinine doesnt work . Then I learned one of the causes was iron deficiency. So I took a iron sulphate tablet once a day and it started to work. Sort of soothed away the itching feeling inside my body. Now if I ever get restless leg I know it's my iron so I take it and it goes.

    • graham9772
      graham9772 kelly90944

      Posted

      That's wonderful Kelly.   Quite a few people take iron.   An endocrynologist recommend that I take Iron orotate because he said it was easier absorbed by the body.   I cant find a product that uses this so next best, I believe, is iron Biglycinate.    My iron is hovering around the ferriten concentration level of 85 and I take iron every second night with Vitamin C     An American lab suggests that 100 is the minimum for RLS patients.   However there seems to be agreement that 200 is safe so I will try to get mine up to 180-200 and see if the RLS goes away.

      I wasn't aware of how dangerous it was to take iron supplements without monitoring your blood levels.   You can apparently kill some pretty important organs.   Liver or kidney, I can't remember which.

      Have you had your iron levels in your blood measured?

      Cheers

      Graham

    • kelly90944
      kelly90944 graham9772

      Posted

      Hiya it's been a while I must admit but I sort of self balance myself iron dosage wise. If I press my gums and it takes a while for the pink to return I know im low. Other symptoms show up like aching tired forgetful . So I can tell myself . I buy ferrous sulphate from the chemist 200mg . Your body doesn't fully absorb the full amount you take. But to be safe I take 1 tablet twice a week It keeps my levels ok. I then just take a multivitamin. It worked for me as a cure . And it's worked consistently when ive had repeat episodes of the leg syndrome . I've forgotten to take my iron in the past sometimes through being lazy or forgetful like we all do and then it would start up again. Id be annoyed with myself then for being dumb and not being aware of my body's vitamin and iron needs . Get myself back on my vitamins and iron and it would go. Sleep as well. Sleep deprivation makes your nerves feel on edge . You feel irritated inside . Weird tingling bubbling fizzing. Twitching eye . Leg twitching even slurred speech . Mixing your words up dropping things. Head aches body aches. All of it lack of sleep.

  • Miko1972
    Miko1972 graham9772

    Posted

    Tried Kinin in Denmark, it's an over the counter medicine, it worked very well at 300mg before bed. I believe it's also called QUALAQUIN, I could not get it in UK so I don't know much about it to be honest.

    Other thing that always works is standing bodyweight calf raises, hold for a count of 2 seconds while the calf is flexed. 1 set of 20 reps does the job.

    Also full bodyweight squats, again 20 reps and hold for a count of 2 seconds while legs are at 45 degrees, or parallel to the floor.

    Thanks!

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