question about RLS?

Discussion in 'Fibromyalgia Main Forum' started by amilyne, Feb 17, 2003.

  1. amilyne

    amilyne New Member

    hi all i have a question about rls...can you have it just when you are sleeping?i dont feel like my legs are jumpy or anything when im awake(im fidgety though) but i have been told since i was little that i kick alot in my sleep..when id stay at my grandmas(when i was little)she'd have to sleep on the couch cause id kick her all night and now my bf always complains that i kick him too. just wondering.thanks
    --ami
  2. layinglow

    layinglow New Member

    Initially when I began having RLS it was occurring at bedtime, and was a mild discomfort, I just had to reposition my legs repeatedly, and when finally asleep, kicked during the nite, according to my spouse.

    It has a times gotten worse, to the point of spasms, envision a frogs legs in action, and then was very painful. After an hour of spasms, jumping legs, etc. the muscles in my legs would feel totally exhausted, and in pain. It seems to occur mosts when I am very mentally and physically tired.

    It has been said that we with these disorders suffer from seizure activity. This has become apparent to me, as I have racing, and misfiring going on mentally, and my limbs, trunk, neck, and head, if extremely tried, go into the spasming, and twitching. I have since started on a low dose of klonopin now, before bedtime, and it has alleviated the problem.
    LL
  3. amilyne

    amilyne New Member

    hi im bumping this because im sure there are more of you that could answer this one for me. thanks
    --ami
  4. catgal

    catgal New Member

    At night shortly after getting into bed, the restless, aching legs would start for both of us. He'd wind up walking the floor in the wee hours of the morning to try and work it out, while I rocked my feet back & forth for hours. He also kicked so much after he finally did get to sleep plus slinging his arms that I had to move to my own bed for self-protection.

    My physician put me on .5mg of klonopin for a year, and as long as I take it every night--I don't have RLS and sleep much better. A couple of weeks ago, the Pain Specialist my physician referred to for a consultation about my narcotic pain management meds increased the klonopin to 1mg.

    I would share my klonopin with my mate because I couldn't bare to see him walking the floors in the wee hours and having to go to work that next day when I had something that would stop it. However, by doing that I always ran short before my refill time. My mate also has ADHD (hyperactive), and we use the same doctor so last month I had him talk to our physician about his RLS, and the doc gave him a script for .5mg klonopin--so now he has his own meds for the RLS. However, the .5mg is not strong enough for him, so next month he going to ask the doc to up it to 1mg.

    I remember when I was growing up that my Mother used to complain about "nervous legs" or having the "leg ache". So did her Mother--my Grandmother. My mate's Mother suffers from it also.

    I have heard that it is caused by poor circulation, but I don't know if that is accurate. That when some people recline or lay down as in bed that something in the body prohibits the blood from circulating like it should, and thus is relieved by getting up and walking. Does anybody have any research on this? Carol...
    [This Message was Edited on 02/18/2003]
  5. Fireball

    Fireball New Member

    I have never been treated for rls. However, I can only sit in a car for about an hour before I absolutely have to walk. The same thing happens on a plane. When I fly I try to get an aisle seat or better yet an exit row so I can stretch my legs out. I am up and down a lot on a flight. However, if I tell them that I have any physical problem at all and need that exit row seat, they immediately will not allow me to be assigned to one.

    I have always wondered if other people who have rls have to put their legs up when they sit down on a stool, other chair or rungs on a chair. In a concert or lecture, it is pure torture to sit through a performance. I have thought about bringing along a small stool for my legs.

    I don't think that I kick my legs when I sleeping. I do have to get up and down though most of the night.
  6. Dara

    Dara New Member

    it's a medication used for Parkinso's Disease. My symptoms aren't as severe as some. I just feel like I can't hold my legs still, I have to stand, stretch, flex the muscles, anything for movement. This really runs in our family. My Mom had it so bad nobody could sleep with her. Also, my sister and three brothers have it to. It's a real frenzy when we're all sitting at the same table, kicking!!!

    Dara
  7. layinglow

    layinglow New Member

    Isn't due to poor circulation, but is neurological in nature. That is why the klonopin works, as its primary use is as an anti-seizure medication. In low doses, it also promotes sleep, helps with anxiety and panic, and eases nerve pain. It's a wonder drug, in my cabinet.

    Also yes, restless leg doesnt have to take place during sleep. I too, when traveling have to move and reposition repeatedly.

    One can also experience the same in their arms.

    LL
  8. Mikie

    Mikie Moderator

    It's in our library and if you do a search on Dr. Paul Cheney, it will list all his articles. He's an expert on CFIDS, but this pertains to FMS as well.

    RLS is only one of the problems produced by the slight state of seizure in our brains from our illnesses. Klonopin is an antiseizure medication which also helps us sleep, decreases our anxiety/panic attacks, and diminishes sensory overload. It also helps with tinnitus.

    An alternative preferred by some docs is Neurontin. I believe Klonopin is easier to use dose wise, but some docs think, erroneously that it is addictive.

    Love, Mikie