New CIDP Patient–Insomnia Since the Beginning

    • Anonymous
      June 29, 2013 at 9:33 am

      Hi all,

      I was recently diagnosed with CIDP, which has been scary and unreal at the same time. My symptoms came on slowly, but I’ve had two really bad flare-ups of excruciating pain (one which sent me to the ER for the day). I didn’t even know what CIDP was until the doctor (and three others who confirmed his diagnosis) told me that I have it CIDP.

      But, on a positive note, I won’t let this rain on my parade. There’s much to live for and be thankful for, and being of sound mind I can still contribute to a better world and be a good husband and father (though with some accommodations around the house).

      Alas, now for my question, after some needed–albeit brief–throat clearing. I was wondering if anyone else with CIDP struggles with insomnia? As my symptoms progress, I notice that I have increasing difficulty sleeping.

      I would greatly appreciate any thoughts, stories, suggestions, or encouragement.

      Blessings,

      Parker

    • GH
      June 29, 2013 at 1:06 pm

      I’ve had insomnia all my life, but I’ve never struggled with it. I just keep a book or puzzle handy. In the hospital with CIDP, when I was unable to hold a book, I would lie awake all night and listen and think. I tried sleeping pills once, but gave it up when the minimum dose didn’t seem to help.

    • Anonymous
      June 30, 2013 at 3:56 am

      Hey GH,

      Thanks for your response. I’ll try to keep a book or something handy and woo myself back to sleep. It’s certainly worth a shot. My trouble seems to be that lack of sleep exacerbates the CIDP symptoms during the day (and makes them worse at night as well), such as pain, numbness, and weakness. I’ll try some type of sleeping pill, just to see if it works. If not, I suppose I’ll adjust and use my new time to plumb the depths of my thoughts (hahaha).

      Thanks again,

      Parker

    • Anonymous
      July 15, 2013 at 8:44 pm

      Are you taking steroids? I have taken them once and I didn’t sleep for three days. I can not take those at all.

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