Help my legs are trying to kill me !

Discussion in 'Fibromyalgia Main Forum' started by missingsleep, Apr 24, 2003.

  1. missingsleep

    missingsleep New Member

    I have just found out that I suffer from RLS. The Dr. I see has prescribed zanaflex which has never had a long term effect with me, 2 months tops. Can any one give me some other meds that have been prescribed for RLS?
    I would greatly appreciate it.....and my legs would also!
  2. judywhit

    judywhit New Member

    is how I describe my painful legs. I know what you are going through. I have tried neurontin to no avail. The ONLY thing that helps my restless legs is oxycodone. I take 5mgs up to 15mgs. On somenights 5mgs does the trick. I will be laying there and I will feel a warmth cover my legs this is how I know that the meds are kicking in. Restless legs have got to be the most aweful problem. I really do not think that without opiods I would even be functioning. this has helped me tremendously. Keep us posted.
  3. dogwoods

    dogwoods New Member

    I've had RLS for over 10 yrs. and have been on numerous drugs, all seem to lose their effectiveness over time. After months of pain and frustration, my neuro put me on Mirapex, a Parkinson drug. It's been the miracle drug for me, and so far, without any side effects! I also use Vicodin for breakthrough RLS, but that doesn't seem to be a problem at this point. Hope this helps. I've been there and it's awful!

    Dogwoods
  4. Sissy123

    Sissy123 New Member

    I have had rls so bad that I havnt slept for 6 days and had blisters on the insides of my legs. My doc saw it and finally believed me. He prescribed klonipin and it is a wonderful drug for this condition. It drives me absolutely mad. I have no problems with it anymore. I was given .5 mg at first for a week and it helped so he then gave me 1 to 2 mg at night now. It has been a real blessing. Good luck. Sis
  5. kckitty

    kckitty New Member

    I have bad knees too and I take Skelaxin-its like a muscle realexer-I do take percocet too-but try the skelaxin-I'm not saying I have no pain it just seems to help and its the newest muscle relaxer that I have heard about.
    can you get cortizone injections in your knees? that helps me too-its just trying to get a damn appt, referral, etc to finally get into my rheumy. good luck.
  6. VickyB

    VickyB New Member

    I just received a new prescription for Amantadine!! I am so excited (sorry can't help myself) My new doctor had taken me off of this medication and I felt sooooo much better on it. My legs have driving me crazy plus this medication helps with energy and anti-viral. Who could ask for more??
  7. Dara

    Dara New Member

    for RLS. This was prescribed for me from the Fibromyalgia Clinic, they claim it's one of the best. I also take zanaflex, but can't see where that has ever helped the RLS.

    Dara
  8. kredca4

    kredca4 New Member

    It's the Pits at times, I take Klonipin (SP) when it's real bad, but for most day's the Vicodin and Soma and Vistril that I take for other conditions also help with the RLS.
    Hope you find something that will help you. Does it get worse when your anxious or stressed? Mine goes nuts, that's when I take the klonipin, I have bad ankles and when the RLS is acting up it makes the ankles worse, sheesesses.

    Sincerely,
    kredca4
  9. kar1953

    kar1953 New Member

    Hi! I hate to sound so dumb, but what are the symptoms of RLS? Is this the one where your legs jerk around involunteraly (sorry about spelling - fog). Or is it just pain & no movement?

    Thanks........Kathi
  10. VickyB

    VickyB New Member

    The only way to describe RLS for me is that it feels like an itch deep down inside my legs that I cannot get to. Blankets or anything touching my legs make it worse especially right before I go to sleep. I probably feel more anxious about it right when I lay down because I know I have to get some sleep. I do know that RLS has to do with Dopamine levels.
  11. kar1953

    kar1953 New Member

    Appreciate the info. There are so many terms I've yet to learn about that it boggles my mind sometimes.

    Thanks........Kathi
  12. Shirl

    Shirl New Member

    My RLS stopped when I started taking ZMA(zinc, magnesium and vitamin B-6) for sleep, this is a year ago.

    Mine were so bad they would wake me up at night, and I would have to get out of the bed and try to walk around to stop the shaking.

    I also take Pro Energy (Malic Acid and Magnesium Glycinate), which makes two different magnesiums I am now taking.

    I think a deficiency in magnesium is the cause of a lot of our problems, including this one. My eyes stopped 'jumping' too.

    Shalom, Shirl
  13. Achy-shaky

    Achy-shaky New Member

    If you have RLS with pain many other remedies do not help. I was so happy when I got the Mirapex...I started out on low dosage and have increased somewhat in the last 2 yrs. - got it from my neuro who was the only doctor that knew what it was after asking many others. As long as I take it early in evening I get none of the bad deep pain that makes you want to scream or the creepy crawling feelings.

    I feel blessed that I don't have that problem any more...now if I can find a solution to all the others I will be jumping with joy. Hope you find some better relief soon. In the meantime, have you tried taking hot bath before bed? Sometimes that helps a little.

    Blessings,
    Shaky
  14. layinglow

    layinglow New Member

    Klonopin has been a godsend to me. I had not only RLS, but myclonic seizures (involuntary jerking of arms, legs, trunk, head, and neck, also eyes blinking)

    Dr. Chaney (you can find his articles in the library, here), say that patients with our disorders have mini-seizures, which manifest as RLS, anxiety, sleep disorders, sensory overload, etc. He suggest .5 mgs of Klonopin at bedtime. I haven't had RLS since taking it (have been on it 6 months). I take 1 mg. at bedtime.

    The other symptoms I had mentioned have been relieved greatly, and when they occur, I put two tablets under my tongue to get the symptoms to stop. Many who are sensitive to meds can find relief with .5mgs at bedtime, and one half of a tab .25 mgs. during the day for the other symptoms. Mikie the Moderator was the one that originally spoke to me about this and the success she has had with Klonopin. It certainly has benefitted me greatly, and my Doctor said it was wonderful for RLS, also.

    Restless legs, appear at the end of the day, due to the sensory input we recieve all day, our brains in a sense have a bit of neuro-excitability, and it manifest itself in this way for some.

    Klonopin is an anti-seizure med, often used in petite mal seizure patients. It is also used as an antianxiety treatment.

    Best wishes,
    LL
  15. nancyneptune

    nancyneptune New Member

    field goals every night, before I even went to bed. The RLS would start around 8pm. I'm telling you I'd be sitting in the chair watching tv and my legs had a mind of their own. You would have to give me a wide berth walking by me cuz you could get kicked pretty hard!
    I had absolutely no control. My neurologist gave me Mirapex.
    Marvelous, wondermous drug. No more RLS. But beware!! It costs two arms and a leg! I can't even get the whole script filled at once (90) because it costs 256 bucks!! If you're lucky enuff to still have insurance then go for it. If you have no drug coverage, I'd ask for Sinemet. It's much cheaper.
  16. Manwithfibro

    Manwithfibro New Member

    You can try taking 400 IU of Vitamin E with a glass of Pierre. Good luck. My legs are always bad but this stops the kicking.
  17. bearcat

    bearcat New Member

    I am taking carbidopa/levo 25/100 (generic for sinemet) 2 tabs at bedtime. Started at one tab but that did not work so doubled the dose and now getting relief. Have heard good things about treatment with klonipin and also requip good luck, hope it helps
  18. tansy

    tansy New Member

    This is one problem I did get under control by using magnesium, zinc and b6.

    Saw a doctor about 18 years ago who used nutrition, supplements, etc as an adjunct to conventional medicine. Was way ahead of his time and considered a quack by many strictly orthodox doctors. His regime was similar to that which many of us are using today though of course much more has been learnt since then.

    Cheers

    Tansy
  19. donna13210

    donna13210 Member

    ...so little time.

    Does RLS really have such a wide array of symptoms? Some with pain, some without, some with involuntary movements, some without. Could it all be RLS?

    I'm convinced I have it. Don't know where I got it but I'd sure like to give it back!! LOL It starts only after 8 pm and I agree with the descriptions "heebie jeebies" and "a deep itch that you cannot scratch". Truthfully, (I can't believe I'm telling you this), sometimes it drives me so mad I punch my legs trying to get it to stop!

    I hope to get started on Klonopin soon, to help with a variety of FMS symptoms, including these spastic legs!

    Take care all,
    Donna
  20. jka

    jka New Member

    my doc has me on mirapex for my fibro.the first thing to goaway was restless legs.then my energy went up.when i get to the full dose,the pain should go away also.there are some parkinson med. that work well.
    hope this helps.
    kathy c