Aarrgghhhh restless legs!

Discussion in 'Fibromyalgia Main Forum' started by robin, Jul 11, 2003.

  1. robin

    robin New Member

    Haven't always had them. Started Clonzepam
    a few yrs ago by therapist to slow my mind down
    at night so I could sleep. didn't know what
    restless legs was....then it came along and it
    is driving me nuts. I get mine days and nights.
    My knees and thighs hurt and get "antsy".
    I have checked the board and Vitamin E at 400 mg
    a day helped someone and Aveda's Blue gel helped
    someone else...
    Also trying to find a new therapist and see if she
    knows any more...seeking answers for sure.
    Got the RL tonight and was forced out of bed from
    frustration and am on computer for a few mins.
    Took a pain pill too and hoping eventually for
    sleep, but with chronic fatigue also a 24/7 problem
    I sure don't need this! I go from bad to worse
    and often wish I could just die so I could dump
    this diseased body and be free!
    thanks for listening....haven't been on boards
    for awhile.

  2. soprok

    soprok New Member

    My pcp put me on mirapex. It is a miracle pill for me. My mother also takes it for restless legs. I have fibro.
    Check with your doc. see if he will let you try it. Only takes a low does. Debbie
  3. tulip922s

    tulip922s New Member

    Although I don't get it that often and only at night which is terribly painful, I take Zanaflex and it does the trick for me. Best of luck. Tulip
  4. Annette2

    Annette2 New Member

    I take Neurontin for RLS and it helps a lot. I don't take a huge dose (600 mg. at bedtime) and it does the trick.

  5. joannie1

    joannie1 New Member

    Robin, I know exactly how you feel with this. i suffered for thrre plus years with it. I had flexeral and zanaflex and nothing at all helped mine until my neurologist took me seriously not too long ago. Asked how long I had had this and why nobody treated me for it before. Go figure... Even had a Rheumo tell me that I could make it stop "IF" I really wanted to, whatever. Never seen him again. However after years of trying deal with it and a lot of sleepless night I finally was put on carbodopa/levadopa. It is actually a med for parkinson's disease wich had me a bit freaked out but it does the trick and now I can sleep without the terrible pain and antsiness of restless leg. Although it is only at night so i have to deal with it all day long....
    Hope this helps and maybe ask your doc about it because it is very helpful for me. Also I don't believe it is an addictive drug in any way.
    Take care and good luck.
  6. robin

    robin New Member

    THANK YOU to Soprox and others who responded.
    I wrote down what you take to check with my doctor.
    Before I take anything I also have to see if any
    of those mentioned would mess with my diabetes 2
    or my gluocoma in eyes. My numbers on both are
    good right now and want to keep them good. some
    meds cannot be taken with diabetes. I forgot to
    mention I had those also. But it may be okay.
    thanks for the input! =)

  7. robin

    robin New Member

    Hi! I tried Neurontin before for something else.
    I had dizziness, lightheaded-ness, and blurred vision
    for 3 days! I cannot take it. But thanks for writing.

  8. elaine_p

    elaine_p New Member

    Well, never knew I had restless legs. Maybe I don't. Sometimes I feel like I just have to do something with them, though, or I can't get to sleep. Gee, I guess they feel restless!

    Anyway, what I do when that happens is tense all my leg muscles and hold it for several seconds, then slowly release. I do this two or three times while I'm lying in bed and it seems to help.
  9. robin

    robin New Member

    Mirapex eh? vitamin E. Have to make sure they
    don't threaten my diaBetes or my eye problem of
    glucoma...those make me harder to treat!

  10. rozchuv

    rozchuv New Member

    When I get RLS I increase my Calcium and Magnesium. Calcium Lactate is especially effective for jumpy muscles. But, if I don't have that on hand I just increase my Calcium and Magnesium Citrate until it works. LOL Rosalyn
  11. Sunshyne1027

    Sunshyne1027 New Member

    I am so glad someone brought up the restless legs. Its been awhile since this topic has been touched.

    I have had restless leg problems since a child, got intensified when a teenager. During that time until I got diagnosed with FM, I didn't know it had a name.. Then it all went away for awhile, and then came back on in my mid 20's. Now, it comes and goes, sometimes more so at times, sometimes not at all for months. Havn't had a episode now for some time. Knock on wood!

    My doc for the Fibromyalgia prescribed zanaflex. And it works somewhat.

    I understand and I hope that helps you, knowing you aren't alone with it. The antsy feeling, if you lay down to sleep, get the urge to get up move your legs around. If you don't do that, then it will drive you crazy until you do. Pacing and trying to take warm baths, falling asleep finally in a total exhaustion anywhere you can just lay down. I understand for sure.

    I am going to read now what others had to say about it, maybe find some relief too. The zanaflex don't always work.
  12. jadibeler

    jadibeler New Member

    When I found out other people had this problem, it was one of the great days of my life! It used to drive me nuts.

    This may sound oversimplistic, and not all could do it, but my worse experience with the restless legs came when I was crammed into the back seat of a car on a 400 mile trip. I couldn't get up and walk around so in desperation I took 2 aspirin. To my surprise, it worked.

    Now that's what I do whenever I get them. I did read years later that aspirin should help.

  13. Blackfoot

    Blackfoot New Member

    I too take Mirapex, Every night! Some time s 1 tablet, and as many as 3.----I does help, so far. I used to take Sinemet. My mother has it and so do my two adult kids. I'm so thankful that Drs. actually know about it. I used to think it was just "in my mind"!
  14. soprok

    soprok New Member

    I take Neurotin every day. I have taken up to 6 and 900 mg a day and it never once touched my rl. I was on a drug study for pregabalin and loved it. Did not clear up all problems from fm but it did lots better than Neurotin. Then goverment took us off it because of a rare tumor in a rat. My doc said they use it in Europe and probably someday will let us try again here. After being taken of of pregabalin is when I started takeing Neurotin it helps some but not enough. And like I said never touched the rl at all. Just mention these to your doc. He will be able to help. I think every doc in this area gives low does of Mirapex for rl. As soon as a doc of mine or my mom sees the low does of it they say you have rl don't you. My son also has it and I think my almost 3 yr old grandson has rl also. I pray I am wrong there. I get my rl anytime during the day or night. Mirapex is also used for parkinson disease. Debbie
  15. skyechild

    skyechild New Member

    Hi Robin,

    I went to a sleep lab 15 years ago and found out I have RLS.
    My then-doc put me on Senimet (carbodopa/levadopa), and I took it every night unless pregnant. When I was dxed with fibro, my rh doc took me off the Senimet and put me on Klonopin 1mg, and Elavil 10mgs. The Elavil I take around 7pm, and the Klonopin I take at 10pm.

    My RLS symptoms are much better this way, and I get a deeper more restful sleep.

    I also take Lexapro and Ulltram in the ams.

    my email is child_of_skye@yahoo.com, feel free to email me if I can be of help!