Restless legs syndrome?

  • I went to the doctor Tuesday. They want to do a hormone panel blood test to check and see if they should further investigate the possibility of me having PCOS. She also wants me to do a sleep study as she believes I have RLS.

    Anyway anyone else here have It? How old are you (me 19)? Does it extend to more than just legs? I think mine is in both my legs, arms, and face. Is it worsened by excitement or anxiety?

    I have it bad when excited. If I really like a movie... Sad thing is... I can't sit still to watch it. When I was a kid and I was excited about my birthday or something I would do what my parents called freeze face. I would flex and tighten every muscle in hands legs and of course face. my parents called it freeze face because I would kinda get stuck like that for a few seconds and be all twitchy/trembly. They said it was Stereotypes and I would grow out of it... Nope.... I can control it better but still nope did not go away.

    Whn I was 10 It took on the form of pacing/walking/running. And needing to go for car rides. The vibrations of the car help A LOT. So I'm obsessed with car rides... And I still can't drive lol.

    When I went to the assistant doctor (or whatever she's called) instead of the pain doctor about my restless legs a year ago she told me it couldn't be restless leg syndrome because I pace/walk it off. And the main doctor I saw this week seemed really surprised when I told her that. She said the feelings (tingly sensations) i described sounded just like RLS. And she was worried because it Was doing damage to my feet and ankles. I pace like crazy, so my feet get bruised and my ankles get sore.

    I won't deny though the legs are the worse place I feel the restlessness. But if I drink coffee it's bad in all three places.

    So the doctor wants want me to do a sleep study... Anyway don't forget about the questions I have near the top!

    You know it's interesting because I took a DNA test(for fun) and it said I had a very high risk of RLS and my grandmother took it and it said she had a high risk of sjorgens disease (something like that). Which she does. Weird.
  • My sympathy to you. I have restless leg/body syndrome, mercifully have not had an episode for a while now, it is hades. I would lay down to try to go to sleep and my body HAD to move. Twitch, jerk, flex ugh. I tried med for it and it helped for a while then I had to stop taking it. I even tried the bar of soap under the sheet at the foot of the bed wives tale thing, Hey desperate times call for desperate measures. Somehow it seems like you have something more than just restless legs though, anyway no advice but I feel your pain.
  • Maybe it was a placebo but I had a patient on a night shift (I'm a nurse) who couldn't sleep despite medication and was continually complaining of restless legs. I finally tried the soap as a last ditch effort and believe it or not the bars of soap helped!
  • Quote: Maybe it was a placebo but I had a patient on a night shift (I'm a nurse) who couldn't sleep despite medication and was continually complaining of restless legs. I finally tried the soap as a last ditch effort and believe it or not the bars of soap helped!
    The odd thing was that it did seem to help for a while. It just sounds so goofy to do it, lol.
  • I am 48 and have rls and plmd (periodic limb movement disorder, which for me only occirs while I'm asleep. My rls mostly occurs in bed, but occasionally will occur mid-day. I have been on the meds for about 10 years (though I probably had the condition all of my life).

    Before the meds, I tried the soap thing, which did seem to decrease the frequency and severity of leg cramping, but didn't do much if anything for the actual rls symptoms (the tingling, crawling, electrical shock sensation).

    I was initially reluctant to go on the meds, because of the stigma against it (rls amd plmd are often seen as invented disorders, created to sell medication and medical services).

    Anyone WITH rls or plmd, knows just how debilitating the attacks can be. It isn't just an urge to move or a short and occasional bout of "jumpy leg" or thrashing about in your sleep. Walking can help woth rls a little, but if you can easily and quickly "walk it off," you probably don't need meds and may not even have rls.

    The meds aren't something to take lightly. They can have serious side effects, and stopping the meds, once you're on them can (at least temporarily) make the symptoms much worse or more frequent.

    I don't know a lot about daytime rls, or the meds' effects during the day, but it sounds like your symptoms are severe enough to at least consider medication - it's at least worth discussing with your doctor.

    I don't regret going on the meds, because my body no longer feels like a puppet being manipulated by someone else contolling the strings. Still, I had to consider the pros and cons very seriously.
  • I had restless legs problems as a side effect of medication and it was terrible. All I could do was sleep it off. I generally got it of a night when I was tired. I pity you for having it.
  • OMG, yes, it's terrible. �� I feel like it is kinda situational -- so walking it off makes sense to me bc you're probably changing the situation, iykwim. I never had it until I was pregnant at 32. Apparently it's more common during pregnancy and sometimes doesn't go away after. It used to be that the worst situations for me were sitting as a passenger in the car (not while driving) or sitting on the couch watching a movie/show. There were times that is have to give up on my movie and go to bed and then it would be fine. But now I get it in bed, too, which is such a nightmare if I'm really tired or have to get up early. No matter how tired I am, it takes forever to fall asleep and I'm totally miserable. Sometimes I almost don't sleep at all. It isn't all the time, though, thank god. But seems to come in cycles, like if I have it one night, I'll probably have trouble for several nights.

    For me, it's only my legs (knock on wood!). I am pretty sure I would be a basket case if I were you. �� I'm pretty sure I'd go on the drugs.

    I do feel like it's gotten a little better since I started working out a lot. But my workouts are long and intense and really work my legs. Not sure if any old exercise would help. It's also possible that it's not the exercise but the change in diet or the weight loss.

    Anyway, I wish you luck w it. And I totally empathize.