• Anonymous
      July 31, 2006 at 10:38 am

      For a while now, I’ve noticed that my right hand seems to shake every once in a while. Now my upper body seems to shake, too. The shaking doesn’t interrupt my working but does freak me out. And on Friday, it seemed to go on forever — really just 30 minutes or so.

      Does anyone else have this problem???

    • Anonymous
      July 31, 2006 at 12:46 pm

      Hello Cathy,
      I have had hand tremors (shaking) since 1999. My left hand shakes more then my right. I still have the tremors, but they shake alot less then they did. I was diagnosed with CIDP in 1998 and my legs were like noodles for about four years. They are ALOT steadier now.

    • Anonymous
      July 31, 2006 at 2:23 pm


      When I’m under a lot of stress or am very tired or very hot, I’ve noticed that my legs shake. I don’t know if anyone else would be able to see it, but I feel it very clearly.

      All three of these things happened — stress, fatigue, heat — recently when I was stuck at Dulles Airport after my flight was canceled. This was during the big rain storm in June and the air conditioning was not working well in the terminal.

      My cell phone battery was about to die, and I had nowhere to stay for the night and no flight home. At one point, I just plugged the phone charger into an outlet and sat down on the floor of the terminal. That’s about the only thing that made the shakes go away. Thankfully, my wife was able to arrange a hotel and a flight home the next day.

    • Anonymous
      July 31, 2006 at 3:39 pm

      My right hand shakes all of the time. Sometimes worse than others. Sometimes I cannot write my name without using my left hand to steady my fingers. Sometimes I cannot eat a bowl of soup or cereal and milk because it shakes all off the spoon. Fortunately, it is not that bad all the time. It is just my hand, not my whole arm. I’ve blamed it on prednisone, but since others have this also, maybe it is C I D P instead. I’ve just learned to cope with it. You are not alone Cathy.
      Mary Ann

    • Anonymous
      July 31, 2006 at 5:14 pm

      Great post!

      As I’ve listed on this web-site previously, one of my major CIDP symptoms is fasciculations (muscle twitching). This is throughout my body now. My recent emg indicated that I now have fibulations (internal muscle fluttering/twitching, etc.)

      I mention all of this because I now have tremors in both of my hands. My neurologist was the one who pointed it out to me recently. It’s constant but varies in severity from day to day.

      Sometimes I feel like I’m just a shaking, tremoring, out of control blob!

      Thanks for starting this thread.

      Shake your groove thing!


    • Anonymous
      July 31, 2006 at 5:20 pm


      My husband and I live 45 minutes from Dulles and would collect you, feed you, put you up, and return you to the airport if this happens again. E-mail me at [email][/email] for our phone number if you are heading to Dulles again.

      I just hate air travel now. It’s terrible for everyone–but a nightmare for folks with disabilities!


    • Anonymous
      August 1, 2006 at 10:11 am

      Thank you, Sharon. It’s good to know that help is out there. I hope it never happens, though.

      After I got over feeling sorry for myself, I felt sorry for all of you in the DC area who had to deal with the rain and flooding. It looked awful.

      Brian Sullivan
      Burlington, VT

    • Anonymous
      August 1, 2006 at 1:24 pm

      Hi, Cathy.
      I get an intention tremor when I’m tired or relapsing–my hands only shake when I’m trying to do something, and the more delicate the needed movement, the more they shake. But I can’t complain: a friend of mine with CIDP has a constant shake, to the point that she has to use both hands to hold a glass.

      I feel worse for the other passengers than I do for myself. It can’t be nice for them to have someone walk down the aisle grasping the backs of their seats as she passes–which is what they get when they fly with me. I’ve awakened more than one poor sleeper. But I suppose it’s better than having to pick me up off the floor.


    • Anonymous
      August 1, 2006 at 1:44 pm

      Thanks for all the support and advice. I’m having a good day — no tremors – but yesterday was awful. I feel very well today and didn’t feel that well yesterday. I’m sure it’s all tied up together.:o

      I just keep on keeping on!!!:cool:

      Peace to everyone.

    • Anonymous
      August 1, 2006 at 6:55 pm

      Since you have days when there is no shaking and days when there is, try keeping a diary for a few months and write down whether you were worried about anything or whether you were very tired or whether you felt good. After a few months have passed, compare your notes.

    • Anonymous
      August 2, 2006 at 6:07 pm

      Brian, I can sympathize completely and I’m really sorry you had to go through that. I also live near Dulles and if you find yourself in a similar situation feel free to email me and I’ll give you my phone number. [email][/email]

      I also shake when I’m tired, stressed out, hot or cold and on my brief attempt at Lexapro which I will never even smell again because of my really horrible reaction to it.

    • Anonymous
      August 2, 2006 at 8:14 pm

      Love the bear. My husband has CIDP and gets interesting fasciculations and twitches at times- especially today when working in the 110 degree heat index outside.
      Klonopin and baclofen are a couple of medications which help us. Perhaps will help someone else?
      Thanks for the smile about it. supersij

    • Anonymous
      August 3, 2006 at 7:37 am

      I love the bear!!!!!;)

      And, thanks for the advice. I’ve been keeping a journal of the dates, time, how long, hands, body, what’s going on in my life, etc.

      Doubt that I’ll see any concrete reason why I shake, what brings it on, how I stress when I have it……just the same ol’ cidp.:)


    • November 13, 2016 at 3:37 pm

      I wonder if anyone has experienced this, I have symptoms and they are worsening but my EMG does not show it. I have internal shaking and muscle twitching and the only thing that helps is holding my arms at my sides tight. I struggle some days with a necklace.clasp or intricate type things. I started IVIG and this last time or my first dose after the original load lasted 2 days. My neurologist has no idea why and has not much to say. Anyone else have this? My legs twitch and I have balance issues.