a new scarey symptom

    • Anonymous
      July 28, 2009 at 3:54 pm

      Last night in bed, I woke up to a pain I’ve never felt before. My leg was feeling that “on fire pain” that my hands went thru a few months ago. I went to get up and fell right to the floor…my leg was asleep completely. This is exactly what happened with my hands. Tho, I didnt fall..b’c I dont walk on my hands. 😮

      I got back into bed very afraid that I wouldnt be able to walk when I woke up again.

      I slept from 10pm last night till 1pm today besides the episode in the night that lasted maybe an hour. I never sleep so much but I think my body needed it.

      The pain is gone and I can walk but I feel like I’m getting over the worst flu of my life. Tired, sluggish, body aches.

      I’m hoping it’s just another signal to slow down…but really I havent been over doing it the last few days. I’m under a huge stress tho and some life changing stuff…God help me if I have to go thru this kind of crap every time I hit a speed bump in life.

      Today I make the final payment for the Disney trip…not a good time for all the things happening in my life right now.

      Please help me pray that this nightly burning leg pain wont happen again.


    • Anonymous
      July 28, 2009 at 4:17 pm

      yikes, Stacey. That sounds scary. I will pray this is a one time event.

      I have been waking up in the night with a pain in my legs that I can’t even begin to describe. It is part charlie horse, part like a tight band around my knee and upper leg, and shooting pain. I have to get up and walk around and it takes a good 20 minutes for it to let up. I don’t get a burning sensation though so not sure if these are similar or not. Sorry I can’t be of more help but I can send ya a hug ( )!

    • Anonymous
      July 28, 2009 at 8:20 pm

      thanks Canada, I’ll take the hug anyday.

      I’ve been having almost charlie horses for a few weeks. The muscles all tighten but not to the point of a charlie horse. Strange.

      The burning was intense and all I could do again was cry and pray for it to either end or let me get back to sleep.

      Still tonite no pain just very tired .

      tired of being tired.

    • July 29, 2009 at 2:24 am


    • Anonymous
      July 29, 2009 at 12:13 pm

      Hi Stacey,

      I have heard of this on fire shooting pain. My sister who is currenting recovering from GBS of the sensory had severe shooting pain of fire going from one leg to another and her arms as well. It was so painful that she needed both morphine and vicidion to control the pain, when and if possible.

      I am sorry to hear that and I hope you gain some comfort in knowing that you are not alone with this symptom. I pray that it is only a one time event.

    • Anonymous
      July 29, 2009 at 3:34 pm

      Pickles, pickle juice, bananas, cantalope and lots of filtered water!!!
      If that doesn’t do the trick, then rest and listen to your body. Its sounds like your speed bumps are surrounding a sinkhole:(
      How many weeks til Disney?:)

    • Anonymous
      July 29, 2009 at 3:38 pm

      Also Gatorade is good for charlie horses because of the potassium.


    • Anonymous
      July 29, 2009 at 3:55 pm

      I gag on pickles…wait, that doesnt sound right.

      I’ll try to increase the bananas and fluids and see what happens. I didnt have the burning pain last night…boy I was scared. Like with what happened to my hands, I couldnt live that way. I feel so deeply for those that suffer with that burning pain on a daily basis b/c if it’s like what I only experienced for a short time, it’s just not fair to have to live that way.

      Disney is 41 days away ! Yikes, I need to make some dinner reservations.
      I’m not so sure that my husband and stepdaughter are very crazy about going. It seems like I’m the only one excited…and Connor of course. REally hurts my feelings but too late now…I’ve already paid for it. I took out insurance in case anything happens but hoping not to have to worry about that.

      Anyway…yeah, you are right, it does seem like my speed bumps are surounded by a sink hole.

      I’m optimistic…I really am.

      keep praying !

      thanks all ,

    • Anonymous
      July 29, 2009 at 8:55 pm

      remember, stress is an aggravating factor. The more stress, the greater liklihood that CIDP will act unfavorably on you.

      Take care, summer almost over, then back to a more relaxed routine.

      Dick S

    • Anonymous
      July 30, 2009 at 8:41 am

      Stress. If I dont have an overflow of stress in my life, something wouldnt be right !

      You are very right to say that a more relaxed routine is ahead with summer ending.
      As much as I absolutely love summer…I do enjoy fall. NOT WINTER.

      Connor starts first grade on August 13th. Way too early if you ask me. We live in a district different from the public schools and they go longer in the year by about two weeks. Even the public schools are starting mid August.
      It’s just crazy.

      No pains again last night…I think this is a good thing. Maybe I just needed that sleep. Maybe.

      Today is our appt with the Neuro for Connor to rule out everything bad as to why he has no reflexes in his knees and ankles. I’m nervous but at the same time, I know it’s going to be ok. There’s just no other alternative.

      have a great day everyone!

    • Anonymous
      July 30, 2009 at 11:37 am

      Sending you sojme positive vibes Stacey. Let us know how the appt. goes.

      As to Potassium, I take it along with magnesium, but it doesn’t seem to make much difference for me around the cramping. I do get the same thing Stacey..the “almost charlie horse “. I find it seems to be worse when I have overdone it physically…which is most days in the summer!

      anyway, looking forward to hearing how things go…