Reply To: CIDP survey – odd relapse pattern, weakness, exercise effects – anybody else??

December 27, 2018 at 6:40 pm

For what it is worth. I describe it as the well is only so deep anymore. At my best with this disease, I “pay for” overworking my body. For instance, when I have to work 12 or so hours at work, I’m wiped out for a few days.

That I can muster the strength and just in general, feel good enough to work 12 hours is a positive sign, but then the next couple of days, my calves are weak, I might get a bit of neuropathy in my hands, and I feel run down.

In a perfect world, of course, I’d never work 12 hours or more and avoid the rundown feeling. Unfortunately, the job comes with the insurance that pays the crazy prices for my IVig treatments.

So if you can, avoid overtaxing yourself. I’ve been at this for 2 years now, and at best I’ve peaked at 90% of my pre-CIDP self. Life though, doesn’t always allow you to quit at 90%. In the end, the bargain is, at least for me, I get one day to give it my all, and I have to pay in turn, with two days of feeling miserable.