Wondering the same thing
Tom, I was diagnosed with CIDP in May of this year, but have been suffering from it for a very long time. Similar to yours, as of last year the pain became unbearably excruciating. “Was” being the operative word here, though.
The moment I was diagnosed I immediately contacted my naturopath. Since then the pain has subsided significantly, and I know my legs have gotten stronger. I know this because before I had to lift them with my hands to place them on the wheelchair foot rests, and now I have the strength to lift them without any help. Like you, though, I wonder if the relief will come and go. I wish I had an answer for you.
Despite the significant difference in my symptoms I still fall, have numbness, and have horrible problems with balance. I don’t fall every day or even every week, mind you. But since I don’t know when I’ll go down I’m in a wheelchair most of the time. While I use a walker here at home, so as to work my legs, I can only take a few steps mainly because I get tired. But most importantly because my hands and arms hurt from the pressure I place on them. I’m terrified to fall that I tend to bear most of my weight on the walker. I suppose my reasoning is that unless I’m holding on to it tightly and my leg or legs give out the walker won’t support me.
While this alternative approach seems to be helping me, I question if I’ll ever walk again without falling. When I spoke to the naturopath I asked if he had ever heard or treated anyone with CIDP. He was honest and said no. However, he mentioned that he along with his collegues around the country have done extensive research and have had much success in treating nerve related issues. Only time will tell if this natural approach will help me.
I wish you the very best, and truly hope whatever treatment you are using will help.
Sorry for making this so long. It is such a relief, however, to be able to share with others my personal challenges, and know I’m completely understood. It’s also been quite refreshing to read everyone’s posts. I’ve gleaned so much from their insight.