Hi again.. been a long time but I need help with RLS...

Discussion in 'Fibromyalgia Main Forum' started by cc0526, Aug 22, 2006.

  1. cc0526

    cc0526 New Member

    Hi again, I know it's been a long time since my lsst post. I am having a problem though and need some advice.

    I have RLS - restless leg syndrom and I know that a lot of you suffer from this too. I have been taking requip (2mg) every night and it is my wonderdrug... unil 3 1/2 long days ago. I have not slept at all. I have brusing all over my shins and foot from kicking the bed. It make me panic and extra anxiety puts me in a very bad place.

    S0, the only thing as far as meds go list last week was this. I had been taking paxil CR for a ocuple of years now at 50mg a day. It worked really well. Only one problem, absolutely no sex drive and I could really care less but I talked to my doc about it and she suggested trying wellutrin with the paxil to see if that would help. I weaned down to 25ng of paxil and slowly went up to 300mg of the wellbutrin. That chage has been okay, no big problems doing that until my new insurance decided I didn't need tha much of both. So i just said fine and increased my paxil back up to 50mg and the welbutrin to 150mg. The axiety had been a little worse. Then three nights ago I started with the restless legs again. I'm afraid I'm going to break a bone! Shin guards on tonight for sure.

    There have been several studies done prooving that paxil CR can make restles legs worsen, but it never bothered me before yet now that I'm tring to go up in dosage again it's giving me a hard time. No Im terrified to take the paxil at all because of the restless legs and got my doc to give me the full scrip for the wellbutrin. Only just got that today.

    Anyone have any ideas for the restles legs besides the requip? I've even doubled the dose to 4mg which the highest recommended I think. Still no relief. I've tried lortab, flexeril, hot baths etc. Went to the hospital tonight and got some much needd fludids (I am just getting over a stomch bug) and they tried both benedryl and valuim IV (plus the ativan I'd taken before) and no relief. They are calming down though, at almost sunrise of course. I'm going to try to get in to see the neuro tomorrow if I ever wake up.

    Thoughts? Suggestions? I'm getting panicked and i know it is all one huge nasty cycle, lack of sleep, fatigue, pain anxiety etc.

    Please help!!

    Patty
  2. maggiemae55

    maggiemae55 New Member

    Ferritin checked? I have rls too and the sleep dr said anemia can make this worse. I have had IV iron 2x with great results. My ferritin is drifting down again, and is now 35. I only take Flexeril to help with sleep. No other meds.


    Just a thought.

    Warmly,
    maggie
  3. Lendy5

    Lendy5 New Member

    Try using a bar of "Ivory Soap" by placing it at the foot of your bed underneath the bottom sheet. Many have said this has relieved their RLS.

    Also apple cider vinegar can be used to stop RLS by saturating legs with it.

    I hope this helps a little and hope you find relief soon.


    carolin
  4. GLASTETTER

    GLASTETTER New Member

    I HAVE IT ALSO I TAKE REQUIP FIRST DOSE LAST NIGHT, BUT I ALSO TAKE KLOIPIN BEEN TAKING IT FOR LIKE FIVE YEARS HUSBAND SAYS I DIDN'T KICK HIM LAST NIGHT. I AM HOPING THE COMBITION OF BOTH WILL HELP
    I HAVE STARTED DOING IT DURING THE DAY ALSO
    IT SEEMS LIKE MY ARMS AND LEGS HAVE A MIND OF THEIR OWN, SOMETIMES MY WHOLE BODY WILL JUMP
    ASK YOUR DOC ABOUT TAKING KLIOPIN ALSO, IT IS VERY CHEAP


    GOOD LUCK AND LOTS OF GENTLE HUGS
    BARBARA
  5. alaska3355

    alaska3355 New Member

    has been my wonder drug. I sleep well...I take .5 mg at 1:00 p.m. and 1 mg at about 8p.m. The nighttime dose takes an hour to "kick" in (bad pun). I have been on this dose for 5 years now and it still works. Good luck!
  6. 1sweetie

    1sweetie New Member

    You are the first person that I have heard that also has so many bruises from RSL. My arms and legs looked like I had been beaten. I truly feel for you.

    I finally have a drug cocktail that works most of the time. I could not use Requip because of headaches. I then tried Mirapex but I can only use a tiny dose because of the serious side effects I was having as I was trying to increase the dose.

    Between the neurologist that had me have a sleep study and my CFS specialist, we keep adding meds until I do get relief at night. I still struggle during the day hours. Because pain was also keeping me awake they added a low dose of Oxycontin, 1 or 2 .5 mg of Klonopin & 50 mg. of Trazodone. I was still waking up around 2 pm. By accident my PCP decided to add Lyrica to help with the pain in my feet.

    The first night I took 50 mg of the med and I slept until 10 am. I could not believe it. That continued for a few days. Now I normally wake between 4 am to 6:30...thankfully most of time the later. Even when I wake and can not sleep it is not because of RSL. I also could never increase the Lyrica due to side effects. It took 4 meds(very low dose of each) to get any relief.

    I do understand how miserable it is to have those feelings. I dreaded the night so badly. I could not find a place to be. I would be so tired from CFS and the meds but there was no sleep and if I did I was still moving. The night of the sleep study there was 42 kicks an hour when I was sleeping.

    Massage therapy has been a blessing. If I do not go a minimum of every 2 weeks, the day hours start to be like the night. Baths in salts also help with the day/evening time.

    I hope you find relief. It is a true nightmare to have a severe case of RSL.

    FYI: Benadryl is being linked to making RSL worse. Also excessive caffeine use will do the same.