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.
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.
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.
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