Restless Leg Syndrome

Discussion in 'Fibromyalgia Main Forum' started by cece, Nov 29, 2002.

  1. cece

    cece New Member

    Are there many of us out there with RLS - along with FMS? Are you taking anything that helps? If so, PLEASE tell me what that is!

    If I take no meds, I can be up 30-40 hrs a stretch 3-4x/week! If I take Ambien alone, I'm zonked out when I awaken 5-9 hours later & still wake up about 2 dozen x/hr! Now I'm taking some "L-Dopa" type drugs & Zoloft (no Ambien) at bedtime - still awake at 4am!. "L-Dopa" pill works well to quell the RLS, but the Ambien leaves me in stupor upon awakening. Of course, then, there's dealing with the FMS-induced 'hitting the wall' a few times a day. What do you all do?
    Thx!O:)
  2. cece

    cece New Member

    Are there many of us out there with RLS - along with FMS? Are you taking anything that helps? If so, PLEASE tell me what that is!

    If I take no meds, I can be up 30-40 hrs a stretch 3-4x/week! If I take Ambien alone, I'm zonked out when I awaken 5-9 hours later & still wake up about 2 dozen x/hr! Now I'm taking some "L-Dopa" type drugs & Zoloft (no Ambien) at bedtime - still awake at 4am!. "L-Dopa" pill works well to quell the RLS, but the Ambien leaves me in stupor upon awakening. Of course, then, there's dealing with the FMS-induced 'hitting the wall' a few times a day. What do you all do?
    Thx!O:)
  3. TeresaBnGA

    TeresaBnGA New Member

    Hey CeCe,
    I was diagnosed with severe RLS after going through a sleep study. They found that I never go fully to sleep and have 64 major limb movements an hour. That is more than 1 a minute. Several of these wake me because they cause muscle spasms.
    They have yet to find anything that works for me. I have been on the klonopin, L-Dopa, and the sinemet. But nothing has helped so far. I don't know if there even is anything else to try. Flexeril has seemed to help with the muscle spasms but nothing else. I wish I had something more to help you. Maybe someone can post something that will help us both. I just wanted you to know that you are not alone.
    Soft hugs!
    Teresa :)
  4. Magnolia

    Magnolia New Member

    The only thing I have found to have any notable effect on RLS is magnesium and vitamin B-12.

    RLS is a real torment!!!

    Sincerely,

    Magnolia
  5. karen2002

    karen2002 New Member

    I have tried amiltriptyline (elavil) at bedtime--it made the RLS much more severe. Flexeril did not help, either.
    Now I am on klonopin at bedtime....has worked like a charm for sleep (less waking up, less racy mind at bedtime so I can fall asleep), no restless leg syndrome, less anxiety and sensory overload, less neurological pain.
    Karen
  6. vloga

    vloga New Member

    Hi Cece.

    I had it for nearly 2 years, 365x24, before being referred to a homeopathic doctor.

    He prescribed a mixture of gelsemium and arnica. Now I take it in a liquid because I can't tolerate sugar pills, but you can buy the pills separately at a drugstore. Try either 6c or 30c strength. You may find that 6c does it, but it may only help sometimes.

    I still twitch sometimes, but at least I don't wake myself up when I do !

    Sleep well !

    Vloga
  7. FAITH

    FAITH New Member

    Hi Cece,
    I haven't been to the message board for awhile now, but I had to respond to this. When the docs were trying to find out what is wrong with me......I did a sleep study and was dd with PLMD (periodic limb movement disorder)..almost the same as RLS. I'm taking Mirapex, which is the same med given to Parkinson's patients. I also had a high number of "brain arousals" during the night, which keeps you from getting into stage 4 sleep. I take ambien to get to sleep and klonopin to stay asleep. They each have their own job to do. They eventually dd CFS/FMS too. Seems they all go together for many people. You might want to get to a sleep study clinic if you haven't done so already. Hope this helps. Sweet dreams!
    ~Faith
  8. nancyneptune

    nancyneptune New Member

    I have restless leg syndrome so bad that it used to start at about 8pm when I was just sitting in the chair watching tv. I'd kick straight out from the knee just like kicking a field goal. Thn that dreadful crawling inside my leg muscles feeling would start and I'd have to get up and walk. I went to the neurologist and he put me on Mirapex. It also has a nice sedative affect too. No more RLS.
    The whole reason I have it I know is because I've been on Paxil and Xanax for 10 years. They also make my hands shake so bad that I no longer have the same handwriting. When I try to put on my mascara I shake so bad I have to support my arm on the wall to steady it. N
  9. kadywill

    kadywill New Member

    I have had this for many years and I can't describe how tormenting it is. As long as I am up and going, I'm fine,(in this respect) but the minute I reline, it starts! Klonopin and Ultram helped me, as did MagTab and B vitamins. I am so sorry you're having to endure this!
    Love,
    Kady
  10. kadywill

    kadywill New Member

    was your dx. as RLS or Myoclonic jerks? A few of my patients with Myoclonus were helped greatly by Mirapex!!!
    Love,
    Kady
  11. Mikie

    Mikie Moderator

    on Klonopin. It does a really good job of explaining not only why we get RLS, but also sleep problems, anxiety, and sensory overload.

    Love, Mikie
  12. Achy-shaky

    Achy-shaky New Member

    I've been on it for a year now and had to increase dosage after 6 mos. which is normal to keep increasing until you find right amount that works. Also it takes between 1-3 hrs to kick in so be sure to take it before you sit down and relax in evening...I take mine around 7pm and it gets me to sleep by 10 or 11 but calms down my legs within one hour after taking. I sometimes have problems staying asleep so I just got Klonopin which they say works fine with it but haven't tried it yet. Mirapex does wonders - hope you find something that works...sleep is so important to us fibros!!
    best wishes for some relief soon
  13. PMangels

    PMangels New Member

    All those who have RLS have my sympathy. My jumpy/jerky legs just drive me crazy!! I don't just get them at night. I get it at work and when riding in the car. This is a nightmare! I also take Mirapex at night but think when I go back to the rheumy in Feb. I'll ask for a higher dose.

    Kadywill, What's the difference between RLS and myoclonic jerks? Never heard of that before.

    Love
    Arlene
  14. Esthechicken

    Esthechicken New Member

    Hello Cece:

    I am so glad to have found this website and particularly this topic. I have suffered from RLS for around 6 years, I also have FMS and Arthritis. I don't take any particular drug for the RLS, the only thing that allows me a reletively normal sleep is to take 1-2 Tylenol 3 pills, of course these have codiene in them but nothing else seems to do it for me. I try not to take them too often but if I don't take anything I am awake for what seems (and often is) hours. My RLS really only starts up properly the moment I lie down in bed, at rest seems to be the worse time, its like electrical currents running up and down my legs and then I get the massive muscle spasms which are so strong they just blow my mind. I am interested in anyones advice on how to conquer this awful problem, I have just started to take a Vitamin B complex and I take extra magnesium. Just knowing I am not alone is very comforting, I have tried many alternative therapies but have not found the magic one yet. I hope you can find something that works for you and maybe for all of us!
  15. KKay

    KKay New Member

    cece, My doctor prescribed Klonopin for restless legs but I found that I had to keep upping the dosage and it left me very out of it in the mornings. She then prescribed Neurontin which is an anti-siezure medication and it has worked quite well. Good luck to you.----Kathy
  16. cece

    cece New Member

    YOur info is invaluable.
    In my case, I didn't even know I had RLS, just that I was waking up some 2 dozen x/nite -- that I could remember! No daytime leg twitching, etc. Took the sleep study to confirm sleep apnea - which allegedly runs in my family. Voila! No apnea, RLS.

    I've been taking a couple of diff meds, but the latest, Clonazepam, only works with Ambien (+ the Zoloft). They leave me totally fogged in the a.m., so quit the Ambien, & now the Clonazepam doesn't work.

    Think the worst, so far, tho, is the exhaustion - what I term "hitting the wall".
    P.S. CVS makes a nitetime cold med that I used for years pre-FMS diagnosis. It really helped me sleep. Otherwise, I'd go 30-40 hrs 3x or maybe 4/week with no sleep whatsoever.

    Again, thx to you all. It's so good to know you're out there.