Long term things with CIDP

    • May 3, 2016 at 1:32 pm

      I have been off treatments for 2 years now. I seem to have a lot of my strength back but I have NO stamina when it comes to physical work. I also have lower back pain at times. There are days when I have no energy and need to sleep a lot. My joints seem to take turns causing me fits. Are all of these things related to the damage that was done by the CIDP? I had infusions of steroids and immunigobulins every three weeks for three years. Now nothing.

    • jk
      May 5, 2016 at 2:21 pm

      Suggest you re-post in Forums/CIDP because this forum is not viewed by most members.

      Your doctor is best suited to tell you what damage you still have. Or, if you have a relapse or something new. Every case of CIDP seems to be unique and forms of CIDP will relapse. That is, get worse again.

    • GH
      May 6, 2016 at 1:16 pm

      Yes, please repost, but loss of stamina and a need for extra sleep are typical of CIDP. These should improve with time, perhaps in another year. Be sure that you have not been backsliding after going off treatment, however.

    • June 2, 2016 at 4:11 pm

      I was diagnosed Aug 2015 with CIDP. My major complaints have always been about the pain in my low back, joints and sudden bouts with maintaining stamina and when I get sleepy/fatigued; it’s a big deal. I spoke with my neurologist about these annoying issues being a long term struggle. He explained to me that it is very common and that I may never get rid of some of these symptoms and that rest and more rest will always be a concern. He did stress that if a continual loss of strength and balance began again then he would have to adjust the treatment again. Currently, I am on every 2 wk IVIG but will soon change to ever 3 wk for awhile. Today, June 2nd, marks the 1 year anniversary of the first onset of symptoms prior to my diagnosis in Aug 2015 (I was reliant on walker then wheel chair). I only occasionally have to use a cane for really long distant walking or when I’m have a temporary onset of weakness. The neurologist has reminded me time and time again that my recovery will be longer than what I expect it to be. I do hope you continue to heal and improve. Warmest wishes to you.