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  1. #1
    Distinguished Community Member Jo6's Avatar
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    Default Any Relief To Be Had ?

    I feel for anybody that suffers from RLS !! My husband has this and this week it has been especially bad. For me!! He didn't remember he jerked all night!!

    Does anybody have any suggestions as to how to live with RLS ? I suggested he talk to his Dr. Dang, you would think I had told him to cut his leg off.

    He knew this guy from work, the Dr. put him on meds for RLS and he had a very nasty reaction. Almost died. Now I think there was more to this fellows story, but K took it for the gospel that it was BAD for everybody.

    Any ideas?? Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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    No or I would be telling dear daughter and my brother about it. They both suffer so bad from it. Wish you luck with finding an answer.

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    Default my post must not have gone through?

    well here's my suggestion which has been proven to help people suffering with RLS. and it sure worked for my sister when she visited here a few years ago. it's simple & cheap!

    place a bar of soap under the sheets at the bottom of the bed. I learned about this through a daily doctor column in my local paper. his name is Dr. Gott,might be able to find his website & read all the info about this.

    nobody has any clue why it works. worth a try don't ya think?

    my mom has this also,why she sleeps in a separate bedroom & has for years. she used to kick dad all night.

    when I had severe myoclonus my entire body jerked at night. my big dog would join me on a twin bed & keep me from falling off. I've no idea what actually caused the myoclonus much less why it stopped after several years. I've always suspected taking Zoloft or consuming too much aspartame was the culprit.

    good luck! eveyone needs a good nights sleep afterall.

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    It must have not made it. I almost missed this myself but was play8ing with all the ways to set the front page, Christmas style, biggie style regular etc and saw on the very front page and noticed that you had remarked so came back. I almost never see the very front page and had alreadsy looked at new posts so am wondering just why I missed it while I was alreadsy inside the forum. Oh well, at least I did see it. I can remember the soap thing, trying it myself way back when my nerves were the reason moved my legs. It did not stop my neuropathy movements so must be for just certain kinds of problems. I even kicked the soap out a couple of times. Of course along with my movements was the pain of the nerves dying. I will try this with granddaughter tho and be very hopeful. I did sleep with her last night verses hubby and kid was as jumpy and all over the place as her mother was, still is from RLM.

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    Distinguished Community Member Jo6's Avatar
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    thanks ladies for the feedback. I think its worth a try with the soap, but the stubborn cuse didn't go for it. Well, he is not awear all the time so he doesn't know how horrible it gets with time. I never feel like I have had a restful nights sleep.

    Maybe I'll just start kicking back!! I don't know what kind of meds. this guy had a reaction to so I can't even look it up. Another thing he does is pick a spot, any spot and start gently rubbing it, mostly around and around or sometimes its just back and forth.

    Now after 10 min. of his just touching this spot is getting on my nerves. I try to move, but his touching sensaction moves with me, round and round, never stopping, never getting slower or faster or even skipping a beat. Just the SAME THING!!!!He claims he is asleep and doesn't know he is doing that. Well, he may be asleep but I'm NOT!!

    See, I'm getting on my own nerves just thinking about it. I have to try to wake him up and tell him enough already, find a different spot already!! Mostly STOP touching me. Its worse than any thing I can think of.

    I wonder if that and RLS are kin to each other????

    Jo, the grouch
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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    Hi Jo,

    Going to the sleep doc was one of the best decisions I ever made in my entire life! :o The shrink had told me that they can diagnose problems, but can't really treat them, but for once, he was ooo sooo WRONG! The overnight sleep study was no biggie, no pain, just minor inconvenience, and they figured out so much from it. One was that my foot and ankle wiggled around enough at night to keep me from ever getting into a deep restorative sleep level -- it just moved enough to bring me up into a shallow level again and again, not quite waking me up. I had a secondary problem of not being able to fall asleep, which was treated with a different med.

    So the treatment for RLS has something in common with a very very low dose of what they use for Parkinsons, and it really did the trick with little to NO side effects. I believe I'm on Mirapex now and it's changed my life and improved my CFS/Fibro baseline pain levels too. The main side effect for me is getting the munchies at bedtime, which is something I can live with easily. The other thing that helps is to completely loosen the bed covers so my feet don't get that "trapped" feeling, something that always drove me crazy but I never understood why. I'd be trying sleep at a hotel or at a friend's and wonder why the night went so badly and WHY I WANTED TO KILL THE BED! Heavy covers of any kind produce the same killer effect in me.

    I don't know about the spot rubbing thing on you, but the sdq BF did the same thing and I wanted to shove him out of bed and onto his butt. I have never had that experience before and man, was it unsettling! Keep your hands to yourself already! NO, I DON'T like it at all, and I don't care if your dead wife enjoyed it or tolerated it either. Go away! Yes, his hand could stay in motion for an eternity, even while he was asleep or almost asleep. I figured it had something to do with the Aspergers and was similar to the hand flapping thing -- hands and fingers always in motion.

    I have no idea what the other guy's meds were, but that's no reason to be afraid to get treatment for RLS. My mom had it most of her life and suffered terribly [and probably so did my dad as a result], but back then they tried quinine. She would get out of bed in the middle of the night to go stand on the cold tile of the bathroom floor. Not sure if that really helped any.

    Please share my success story with him and reassure him that he nothing to fear. Imagine you both getting great nights' sleep! :angel:
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

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    Distinguished Community Member Jo6's Avatar
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    Sher, thank you for responding. Also thank you for sharing these "strange sensations" with me. At least I know it isn't all in my head. It got worse when my knee's got so I had much pain in them and can't get down on my knee's, if I forget and get down on the floor I cuss like the dickens, knowing I am in mucho trouble.

    Usually grandson is here and we are pulling out "STUFF" so the cussing ain't too bad, but he has wittnesed me falling, my whole body airborne. Scared the crap out of him. now he tries to make me sit and tell him what to get. some things are easier to do your self than tell someone else how to. He's good to help me though.

    I don't know what the circle touching means, if anything, but to me it means STOP IT!! It's like the Restless kinee, he always says he is asleep. The way you described it, it sounds just like what I am being driven crazy with. I move, he moves with me. We sleep on a kingsize bed, I try to hang off my side, somehow he ends up drawing circles on my bad knee's!!
    I wasn't thru and it posted, so I guess I better thank you again and hush. ((((Hugs for Sher)))) Julia
    Last edited by Jo6; 02-14-2012 at 04:57 PM.
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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    my folks began sleeping in separate rooms years ago-why? cause mom keep moving her legs all night & kicking. my sister does the same thing & when she visited I had her try the soap thing & she claimed it worked for her.

    I prefer to sleep with my dog. I can tell by the shape of my covers in the morning & the dog being on the rug,if I've been restless during the night. at least I haven't fallen off the bed yet!

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    Hey Julia,

    Does your husband do the circle thing to himself when he's awake? Does he make little repetitive movements on his own body during the day or when he's nervous or maybe driving? Sdq BF has worn spots in his corduroy pants from doing that near his own knee where his hand would rest. He can't stop fiddling with his buttons when he's anxious. Or my toes/feet while we're talking and if we're on good terms. Having his hands in motion seems like a pacifier to him.

    Buttons,

    The dog thing sounds like a good idea and much less trouble than a husband! Plus the dog is probably better house-broken than a lot of men. And less trouble to pick up after. I used to make Tree Guy leave his shoes at the door like I do, but he resented it and told me it was wearing out his socks. When he would come home after stump grinding [a task nobody else liked but he did for some reason], he would take off his shoes and socks and then leave a pyramid of sawdust where he dropped 'em -- maybe two. He also prefered to poop with the cats in their bathroom because then you couldn't tell who made the worst smell. :ambivalence:
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

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    i use the old standby flexerile or its generic i shouod say. and i have been on baclofen for years, well since the early 90's. some day i try both but not always with good luck. i hope you find something that will help you soon.

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