Just curious if any of you have this?

    • Anonymous
      August 6, 2008 at 7:00 pm

      😀 I wonder how many of you have this problem or is it just me doing it?
      I barely get sleep but then when I do sleep, here lately and it did this before years back. I go to sleep to wake up having to go to the bathroom, but my legs can’t move. Almost like parilized and just can’t move them. They feel completely dead.
      I have to lay in bed holding my bladder in hopes I have no accident and try to wiggle my toes. They are dead from the knees down. I have to move my knees first then I have to try and force my big toe to move.
      Once I get the big toe going then the other toes start to come to some form of life but my legs still feel dead.
      I have to sit up and place my legs down towards the floor and just leaning up against the bed in hopes my legs wake up. Then they finally start working but weak and slow. I have to walk very slow holding on to things to get to the bathroom. If not my legs will collaspe and I will fall. I have a walker but it’s hard grabbing it when you need to run. 😀
      By the time I get to the bathroom, I am almost at an accident stage.
      Do any of you get this problem with your legs while sleeping. I have been diagnosed with Chronic Motor Sensory Axonal Demylenating Polyneuropathy.
      Well I have a walker, a wheel chair, shower chair and a cane plus a toilet seat that could go by the bedside. But really am trying not to use it until I have too!
      It’s a scary feeling for one day I fear I won’t be able to move them at all! And think that day is coming!
      Am I the only one that does this! It’s not Restless Leg Syndrome. Been tested for that! But it is nerve damage causing it!

    • Anonymous
      August 6, 2008 at 7:46 pm

      I recently heard about someone with sleep paralysis–in which his mind would wake up, but he could not move his body for several minutes and had to gradually get his body to work again by willing it to slowly begin moving. He did not have a neuropathy. He said it was really scarey to not be able to move, but be awake. This almost sounds like what you have, probably altered some by the fact that you do have neuropathy. If you Google “sleep paralysis”, you can get info from Wikipedia including a “how to cope with” it page and there is a nice “patient handout” from the Stanford Sleep Disorders clinic. The how to page has some suggestions to reduce the frequency. You do not say if you can move your arms. If so, touching or massaging your legs might help them to wake. Changing position might help.
      WithHope for a cure of these diseases

    • Anonymous
      August 6, 2008 at 11:27 pm

      I went through a spell where I had sleep paralysis nearly every night. It wasn’t scary so much as annoying. For me, everything was paralyzed. Movement would come back all at once, too.

    • Anonymous
      August 7, 2008 at 12:25 am

      You hit the nail on the money. I wake up and can’t move my legs. No feeling in them at all. Since this form of CIDP started I have been getting it quite a bit. Very frustrating to say the least.
      My arms try to do it also but so far not as bad. Just the legs more so than the arms. Might be because I move my top part of body around alot in my sleep.
      And sometimes it takes a while for them to wake up. Yep! I sit there and massage them and wiggle toes and move legs back and forth to finally start getting some feeling back in them.
      I wished I would hurry up and start getting treatment. Wonder why some of us get treated right away and others have to suffer waiting and waiting and getting worse each time.
      As you can see again, I am being the Vampire again tonight. Another sleepless night here in the good old state of NC.

    • Anonymous
      August 7, 2008 at 12:48 am

      Linda, I have a similar problem with my legs especially after I over do it really bad(which is most of the time) My husband has the sleep paralysis stuff, and his description is alittle different then what I experience. I have found if I sleep on my side with a large pillow between my knees and having my foot hang over without touching anything it helps relax my foot and leg and has reduced the problem for me.
      I was told I had sleep paralysis when all my paralysis first started-just because I was sleeping when it happened. The same dr who told me that, that dx was wrong, had to redx me when it happened again when I was wide awake and had walked into the er only 15 mins earlier. After the 5th paralysis it wasn’t even brought up as a possibility.
      I also found if I move more often when I feel I’m to the relapsing point, it helps reduce the total paralysis during the relapse. I still go into the relapse but not to the point of having to be in the hospital.

    • Anonymous
      August 7, 2008 at 12:57 am

      Hi Cheryl! Did they ever tell you what was the cause? I know you mentioned Lupus diagnoses and I to have that diagnoses. Bur now I have the CIDP going on too! Maybe I can so some more research and see what happens. Just wished I could get treated soon with this mess!
      I have the pillow between my leg alot every night. And it’s funny you mentioned it but actually hang my feet off the bed. They feel like they can’t breathe under the covers. 😀

    • Anonymous
      August 7, 2008 at 1:28 am

      My husband has the same problem. He will wake me up to help him to the bathroom in the middle of the night. His legs will not move. I am always glad to help him because that is easier than him falling like he has in the past and I have trouble getting him up. He has CIDP.

    • Anonymous
      August 7, 2008 at 8:24 am

      It’s a weird feeling and really strange when you are awake trying your best to wake up the other part of your body. My husband is so good to me during the day’s and evening but is a grouch when you have to wake him up and I hate doing that to him. After he has his coffee in the mornings, he’s a changed me. But waking him up is like battle! So I try not to bother him when sleeping. 😀

    • Anonymous
      August 7, 2008 at 12:15 pm

      Hi LindaH,
      This happens often to me:
      I can be lying in my bed watching TV, and since I can’t feel much, I can’t remember where my legs are. I have to stare at them, and make my mind SEE where the legs are. After a few minutes, I can get them to start to move, making my mind recognize where they are.
      Hello mind, I’d like to introduce you to my legs…LOL.
      Talk about a weird feeling!
      And same as you–I can get the tops of the legs to move first, with moving the foot last.
      KEDASO

    • Anonymous
      August 7, 2008 at 3:32 pm

      Hi! Linda,
      I am new at this and not sure I am doing it right. But I also have a horrible time at night with my legs. My diag. is GBS with acute sensory neuronopathy. I can’t functioin in the dark, if I can’t see my legs I have no idea where they are in bed They get tangled up and feel petrefied (sp?). I guess it is paralysis. I use a bedside commode so I don’t have to wake my husband. We don’t even sleep together because I kick him alot and I don’t even feel it. My legs hurt so bad at night I don’t sleep well, at all. I have restless leg syndrome also which was diag. before my GBS so I do take requip for that. Hang in there, I can definetly relate to your pain and numbness.
      Cathy:)

    • Anonymous
      August 8, 2008 at 2:28 am

      Thanks Cathy. Having one of those sleepless night tonight myself. Went to eye doctor today and the dilating of my eyes is now causing pain. So been up half the night already. Took another pill in hopes it makes me sleepy soon. Sure not fun being sick.

    • Anonymous
      August 9, 2008 at 10:31 am

      Linda,
      How are you feeling this morning? I fell twice yesterday. Due Tuesday for my IVIG. I was in so much pain in my legs last night they just would NOT stop moving. I take requip for restless leg and lyrcia, I take pericet for pain I just can’t get the pain under contreol sometimes. When I read others posts and realize I am not alone in my misery I am not so depressed. Your right though it stinks to be sick!!!!:eek:
      Cathy