help for Restless Leg Syndrome?

Discussion in 'Fibromyalgia Main Forum' started by nan2dance, Jan 23, 2006.

  1. nan2dance

    nan2dance New Member

    I'm going for my annual checkup Thursday. So I was wondering if you all had recommendations for Restless Leg Syndrome? I've heard there's a medication called "Requip". Has anyone tried this? Or anything else that's been helpful to you?

    ~nan2dance
  2. bphayes

    bphayes New Member

    now i have tried requip and i can tell a difference. i told my dr i wanted to try it. it helped me.
  3. janiemac

    janiemac New Member

    After several attempts at meds I finally found one that seems to do the trick. It's called Mirapex. I am on a fairly low dose and as long as I don't forget I am fine. I was shocked to discover that you can get restless leg syndrome all over. It's kinda like feeling like you have bugs crawling all over you! Imagine the first time it happened I was at work and about wigged out !!! It was truely awful. But this stuff does the trick, though if I miss I have some break-through buggy crawlies. Good luck...

    Janiemac
  4. jane32

    jane32 New Member

    But I find when I have caffine afrer 6:30 including choc. I have it. Also, I sleep with a pillow in b/w my legs. I am sure I have a very, very mild form.
  5. Kinsie

    Kinsie New Member

    Do you have the restless leg syndrome if you cannot be still at night? Most nights my husband watches TV until pretty late. I go on to bed. I have to move around alot until I fall asleep. When he comes to bed, then I feel trapped. I don't have room to stretch, roll, put my arms out, etc. I lay there with my nerves on edge, and then the pain starts too.

    Also, if my little dog gets in the bed with me she immediately goes under the covers and plops herself down on my legs. At first it doesn't bother me because I love having her with me. Then after a few minutes I can't stand it, and have to move her so I can move.

    Is this how it affects you?

    Thanks,

    Kinsie
  6. KateMac329

    KateMac329 New Member

    This is what I do for mine...

    When it starts acting up really bad at night I put a hot rice sock on my ankles and for me it helps.

    My legs just feel awkward and achey and I feel the need to move them because they are uncomfortable. When I put the rice sock on them it helps, doesn't take it away but helps.

    Anyway, I just wanted to add what I did for mine.

    kate
  7. cosmoo

    cosmoo New Member

    Hi,
    I delt with this for almost a year before I began working with a sleep specialist. Besides making a few bedtime behavioral changes, he also ran a lab test to check my ferritan levels. He told me that often times this is a contributing factor to mild cases. (you can research this on the web ). Sure enough my levels where close to the bottom and after 3 iron infusions (drip bags with iron in them) my levels were back to normal and so was my sleep, so be sure to ask them to check it. If this did not work he was going to put me on a low dose of requip. He prefers not to use mirapex though while it works well for some people it does have insomnia as a side effect and if you are already dealing with that it can make it worse. Good luck
    Cosmoo
  8. alaska3355

    alaska3355 New Member

    I've been on it 5 years for severe restless legs. I take .5 mg in the afternoon and a full mg. at night. One hour after taking the night time dose, I'm knocked out and couldn't stay awake if I tried. Never had insomnia from it as Cosmoo mentioned. It works so well, with no side effects that I've noticed (except for the sleepiness). Good luck!
    [This Message was Edited on 01/24/2006]
  9. nan2dance

    nan2dance New Member

    I will ask my doc about Requip and Mirapex on Thurs. I never considered dairy. I do have dairy right up till bedtime! Warm milk to sleep even. So I'll see what some changes can do. I've always tested normal for iron levels in my ordinary annual blood workups. They are checking for anemia. So I assume they would have caught the low iron levels. Though I'll mention that possibility to the doc as well.

    I've tried calcium/magnesium to no avail. Also some malic acid thingy.

    Warmth feels lovely! Not just for RLS but for the FM too. I do use a heating pad but those socks sound divine! But heat doesn't always do the trick, sometimes it seems like it even makes it worse.

    I do believe a good acupuncturist would solve the problem. I used to know a couple good ones. But there aren't any around any more. Alas. Like all practioners, there are good ones and not so good ones. Unfortunately, it seems it is especially hard to find a good acupuncturist. Plus, there's the issue of money and repeat visits. I tend to be a "we'll see" kind of patient. Acupuncture, when done well can be incredibly powerful. Western scientists are only just now starting to document it's effects in a "scientific" way. There is a placebo component to any thing one tries. Our will to help it along. That's a good thing. But acupuncture does not require your hope or belief in order to work effectively. I wish I could go see a good acup. right now. It is one of the Big Things that changed my CFS/FM life when I was really, really sick.

    Sorry to say, I don't get trapped in bed with anyone! LOL! I'm on my own for the time being. RLS is characterized by an uncontrollable urge to move your legs. It is typically a night phenomenon. They can itch, burn, and yearn to stretch and move. Mine kicks in once I lie down in bed. It can go all night. Some people sleep right through it and don't realize they've been "running" all night. but usually it's darned uncomfortable. If this sounds like you, seek out a more professional definition and check it out. Combined with the ache and burn of FM it can be hard to sort out. For me, I end up doing stretches at 3am or giving myself painful leg massages at the crack of dawn. What a nuisance! Plus it hurts.

    Thanks so much for responding. If there are other things I can be doing to alleviate this mess, I'm so glad to hear it!

    ~nan2dance
  10. joanng

    joanng New Member

    janimac, you're the first person (for me anyway) to acknowledge you can get the RLS feelings all over. I just had an episode about 2 weeks ago, and I thought I was going thru withdrawals or something. It was in my back and my legs and it was horrible. And it was happening in the a.m. not at night which was weird. It would wake me up! Usually I take Neurontin only as needed (I'm told that's not how it works but it works for me) but my new dr prescribed Mirapix (sp?). He told me to take it only if I need it. Does it work that way for you? I got the impression you take it all the time. He told me it might make me sleepy.
  11. nan2dance

    nan2dance New Member

    Well, I asked my doc about Mirapex and Requip and anything else he could suggest for RLS. I got bupkiss. He said that Mirapex has listed significant side effects/risks. I don't remember what he said exactly about the Requip. One thing was that the rx in question had to be taken regularly to work - something I'm not willing to do with any pill. And another thing he mentioned was that he doesn't like to prescribe anything too new until he knows better about side effects and complications. Basically, he said "ask me again next year". *SIGH* I told him the option was to take codeine and he seemed okay with that. I take it almost every night for the fibro anyway. I had just hoped to not have to take it the nights when RLS was the issue and not FM.

    Thanks so much for making me aware of what is out there. I couldn't even talk to him about this if I didn't have some rx names to suggest to him. That's just how it is. I look forward to anything you'd like to add to the subject.

    Thanks for the input,
    nan2dance
  12. NWmama

    NWmama New Member

    My husband learned from his doctor, who was in his 70s at the time (old and possibly lost medical wisdom) that quinine stops the restless legs. He's been using it ever since, and indeed it has worked beautifully every time!!! Quinine is probably safer that other scripts, so ask your doc about it. Good luck!
  13. Jen102

    Jen102 New Member

    your doc has evidently never suffered from rls, or he would hlep you. i take a very small dosage of mirapex--.25--and it works wonders. it was torment before that. jen102
  14. 69mach1

    69mach1 New Member

    it leaves this horrible taste in my mouth and now i am swelling up again...so i am not taking it tonight...forget...

    anyone know if mirapex give off this horrible burning metal taste as well?

    jodie
  15. roseylisa

    roseylisa New Member

    I to have gotton it all over arms, legs drives me insane!I take four mirapex 0.5mg each at nite just before I go to bed. If I wait until it acts up then I am up with it for a couple of hours!