Fatigue, lack of energy

    • Rick
      February 25, 2016 at 4:05 am

      I am a newbie here, but was diagnosed with CIDP 5 years ago. I have many of the symptoms that others describe here. But the most annoying one is being very tired all the time. Struggling with my lack of energy is as bad as many other neuromuscular symptoms. Some days I just drag myself around. Can anyone else relate?

    • Jim-LA
      February 25, 2016 at 4:33 pm

      Peripheral neuropathies can sap our strength and make us lethargic at times. So can some of the medications our Doctors have us on. Prednisone caused me to feel sleepy and tired most of the time. What meds are you taking? Perhaps there are alternative meds that can do the job without the side affect of weariness? You might want to discuss the fatigue issue with your Doctor and see if different meds could improve your situation.

    • midilance
      February 25, 2016 at 8:30 pm

      Fatigue and lack of energy just happen. I just deal with it and fight it all I can. This is something you should talk with your doctor about. Hopefully, he/she has a good background with CIDP. One of the things I have had to do without is caffeine so there’s no hope there.

      Where do you live? Is your doctor up to date on CIDP. Also, I hear that it’s different for everybody.

    • Rick
      February 26, 2016 at 2:53 am

      Thanks Jim and midilance for your responses. The fatigue and lack of energy have taken over many of the other prominent symptoms. My Drs do know. They decided to discontinue the Cellcept, thinking it might be causing it. But after 3 months only on IVIg ( have been on it for 5 years now), nothing has changed. I have to drag myself all day long. Extensive wok up has been done ( hepatitis, EBV, blood sugars etc etc) all normal. So CIDP seems to be the culprit.
      After reading many posts it seemed to me that the lack of energy and fatigue were seldom mentioned. But as we know this disease is different for everyone. Your responses were very helpful. Thx!

    • midilance
      February 26, 2016 at 2:05 pm

      Time to go back to your doctor and see if he has any other ideas.

    • Jim-LA
      February 26, 2016 at 3:54 pm

      A comparison of alternative meds is listed here:
      http://neuromuscular.wustl.edu/mtime/immunerx.html

      Perhaps a discussion with your doctor could help identify better choices for your CIDP plus fatigue.

    • theresatt
      February 29, 2016 at 6:16 pm

      I’m always sleeping. What meds you ask? Solumedrol before I big drip. 2400 mg gabapenten, colonzipin fentenyal patch 25 MCG, and ambien to put me to sleep, primidone for tremors caused by cidp. Even with the ambien, I don’t stay asleep. My body drags, and my mind is at time deployed of thoughts. I have blurry vision, need new glasses? Probably. Wake up at night feeling like my foot and toes are falling off.
      I know, too much info. Sorry.hope things go well for you.

    • Rick
      March 1, 2016 at 1:58 am

      Theressat: Whenever I walk more than I should or overdo during the day, I also get blurry vision later on. I think all muscles are somehow involved, probably also eye muscles. After hours of rest it goes away. Days with more tremors also make my vision blurrier.
      I can relate to what you describe in your toes. It feels like someone is trying to pull them out. Painful. As for dragging my body, yes, it’s how I manage to get some things done. Hope things get better for you.

    • srkthemom
      March 21, 2016 at 9:17 am

      Fatigue is huge for me. Many years I would tell drs this is a nauseated fatigue not normal. I completely understand. I use B12 and coconut bit D but usually just have to deal with it.

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