Restless Legs anyone else dealing with this???

Discussion in 'Fibromyalgia Main Forum' started by SummerWind38, Aug 21, 2005.

  1. SummerWind38

    SummerWind38 New Member

    Hi everybody hope we are having a few good days... I forgot to ask this in my last post. I have had very bad restlesslegs my legs always ache and react to the cold as my feet are always freezing I have to wear socks 24-7 ... Lately about 20 mins after I go to bed trying to fall asleep it starts in my feet the creepy crawling sensations. It starts it works its way up my legs I cant lie still have to kick and move them finally I have to get up just to get some relief it also happens if I have to go to the bathroom or after as it seems to aggravate it ...

    I have had chronic leg pain since I was 12.. after going to zillions of Drs for a cause and hopefully some relief I finally had a sympathectomy and they cut all the sympathectic nerve in my rt leg that responded to several nerve blocks. Thinking that it would help the leg pain. It didnt after the surgical pain wore off. The pain rebounded. Thats when They assume thats when I developed FMS. I was told that it can occur after traumatic events or surgery and the I had the sympathectomy at 13. so Im not sure if the restless leg syndrome is from my leg pain or from the FMS it all seems to run together now as I always feel like I have being run over by a train that backed over by a truck...lol

    I was just wondering if anyone else is suffering with restless leg syndrome any any suggestions on what to do to get some relief??

    Thanks everybody
    Huggs Robyn
    [This Message was Edited on 08/21/2005]
  2. nanswajo

    nanswajo New Member

    Hi Robyn:

    I have Restless Legs and have for years. As a child I used to have what they called "growing pains" in my legs when I tried to sleep.

    Restless Lesgs is a sleep disorder, so it can definitely aggravate FMS. I use Mirapex, which has been a miracle for me. I take it several hours before I go to sleep. I'm just beginning to start taking it earlier in the evening because the symptoms are starting then. It is best to take it early before it kicks in for the night.

    I always take some with me to have on hand because it can start up when you are sitting down too--airplane ride, long drive, movie. Once on a trip to Montreal I forgot it and was awake and pacing for 3 nights in a row. Horrible vacation. Will never forget it again.

    If it is really bad, then I also take some Klonopin and that does the trick.

    RLS can be caused by a low iron count, so you might want to check that out. Neurologists are the ones who treat this, but like FMS, you want to find one who really understands it well.

    I hope this helps. Restless Legs Syndrome is horrible and I feel for you. I hope you can get some relief and some better sleep so you can feel better.

    Nancy
    [This Message was Edited on 08/21/2005]
  3. SummerWind38

    SummerWind38 New Member

    Thanks so much for replying Nancy:)This Miraplex you take is it a prescription? or something you can buy in a healthfood store or drug store?...

    Your right it does strike at different times sitting for long periods. I use to ride the bus or fly to New Jersey to see my grandmother and I always needed an aisle seat because I couldnt be trapped I had to be able to get up and walk around if I needed to I never knew what it was then ..

    Im having so much trouble find a FMS Dr. I have no idea where I would begin to look for a neurolgist..the only insurance I have since I cant work is medicare and it doesnt pay for prescription so it does get costly. but If I could find something that gave me relief it would be so worth it.. I had been prescribed Klonopin for depression by a Chronic pain Dr.. It made me feel like a zombie I use to used it for sleep now and then but the side effects were bad so I stopped taking it. Is there anything I can eat or maybe an iron supplement that would boost my iron that may help??? Thanks so much Nancy for all your great suggestions



    Hugs,
    Robyn
  4. rileyearl

    rileyearl New Member

    Hi Robyn,

    I've had RLS for a long time. I finally went to a sleep clinic and told the doctor there about it. I was real pregnant and couldn't sleep anyway, but having my legs kicking all night drove me crazy (quick trip.) He prescribed Mirapex. I take 2 or 3 pills in the late afternoon or early evening. No symptoms at all anymore. When I was commuting to work everyday, I was always afraid my leg would kick the gas or brake pedal and cause a crash--especially when I was really stressed or tired. I think each pill is .25mg, but not sure. My regular doctor refills it for me now. It's good stuff! Good luck!

    Francie
  5. nanswajo

    nanswajo New Member

    HI Robyn:

    As you see from the other post, Mirapex is a prescription. It is actually a Parkinson's med. It is so worth it to me. I don't know what its cost is as I pay a co-payment.

    Iron: the best to take is Feosol as it is slow release. It is still best to check with your dr. because if you are not low it is not good to take too much. If a dr. doesn't understand RLS, they won't know the correct iron level as low normal can still trigger it. So, ask to see your results. If they are even normal but low you might try iron sups.

    RLS isn't as bad in terms of being understood, so if you can just find a Rheumatologist of any kind it would be good. There are websites for RLS and suport groups. They have lots of info. You can order free brochures. I receive an e-mail newsltter from one. I'll try to look up the name and post for you later.

    Get it treated. You will feel so much better.

    Nancy
  6. silkyblues

    silkyblues New Member

    I have had restless legs for about 19 years and it was driving me crazy! I wanted my husband to build me some sort of thing that I could sleep standing up. lol RLS was horible.
    I took 400 IU of vit. D for fatigue and it took away 90% of my RLS! And on the the very first day.
    I have been taking Vit. D now for about a year and my RLS is still under control.
    I hope with all my heart that this might help others.......
  7. Megumi

    Megumi New Member

    I'm not kidding. A few months ago I was really going nuts with my RLS and not being able to sleep. A nurse told me she'd heard a bar of soap under the sheet between your legs would stop it. Sounded a bit crazy to me but I don't have insurance, can't afford rx's and was desperate. IT WORKED!!!

    I am a firm believer in coincidences happening for a reason, especially when 3 happen in one day. Well, the day I heard about the soap from the nurse I posted about it here, received several replies from others who had heard of it, too. That same day I called my sister (who also has RLS) to tell her, she laughed, had just read about it in a doctor's advice column that very morning!!!

    I was further convinced when a week into it I woke up one night with legs twitching all over the place. Cursing that I'd followed some dumb theory yet again, I went to get up and walk it off and stepped on the bar of soap that had fallen out from under my sheet. I put it back, laid back down and went right to sleep. CONVINCED ME!!!

    I sometimes have to travel and now my new motto is, "Have soap will travel!!"

    Megumi

  8. BxGirl

    BxGirl New Member

    I will just reiterate what other posters have said here. I have RLS and went for a sleep study. It was the best thing I ever did! My doctor put me on Mirapex and it's a wonder drug! I take it right before I go to bed.

    I used to get "twitchy" around 10:00 at night. That's when I knew it was time to go to sleep. Now I hardly get twitchy any more. I really suggest you go for a sleep study.

    BxGirl
  9. naturebaby

    naturebaby New Member

    Hi Robyn,

    This has bothered me occasionally over the years but this past month it's been awful.

    Normally, when I would get RLS episodes, I would eat a banana or two every day (low potassium can aggravate RLS), take my calcium/magnesium supplements (ditto for magnesium), and iron supplements as already mentioned.

    I also tried flexeril, which is a muscle relaxant that I use for other spasms and muscle tension. It didn't help, though.

    My doctor was extremely reluctant to go to meds like Mirapex and Klonopin (which others have previously mentioned can be effective for RLS). However, she did prescribe low dose Ativan, and that seems to be helping. I take it only at bedtime.

    Best of luck....you should bring this up with your doctor, for sure, because it's hard enough for us fibromites to get any quality sleep without RLS on top of it!

    Wishing you well, nature