Re: Just Checking In - 4 Years Post and Doing Well

It was delightful to read your update :) It gives us all hope.

I can relate to being willing to try anything, and buying many things from the helpful health food store that I didn't need either.

I agree that time seems to be the necessary thing. Also, I noticed steady improvement as well once I could start exercising more heavily. That was a rough transition, as I didn't start exercising because I had any extra energy or felt well enough to do it, but rather because I was desperately hopeful that it would help me to feel better. I remember coming home after going out on my first "jog" around my block, and I was so dizzy, weak, and shaky, I thought I would pass out. When it didn't kill me, I pushed myself to do it again, and I felt the same afterwards: awful. But after a few weeks of this self-torture, I started feeling like I could do just a little more, and I was feeling just slightly less awful after. After a year, I felt much stronger. I felt like I wasn't dying anymore. This was a year ago.

I'm at 3 1/2 years post now, I think (it's been so long I lose track). I've been struggling again quite a bit since the winter. I still have enough energy to do what I need to do, but I have a bunch of symptoms returning: chills going down my scalp, hair loss, weird vibrating in localized areas of my body (like a phone is there on vibrate), shaky body feeling, general lack of coordination, twitching, vision issues (hard to focus), breathing difficulties (feeling like I can't get a deep enough breath/air hunger, forgetting to breath when I shouldn't be forgetting), achy feverish feeling, spacey head feeling, brain fog. Some of these have NEVER gone away fully, and have recently worsened. Some had been gone for a year or so and have come back again. My issues have always been neurological. I would give a million dollars to understand why this happens. And my left pinky is trying very hard to go numb as I write. ;)

I still feel like every year is better than the previous, although this year is not really starting out that way. But I couldn't get much running in this winter with the cold weather, and maybe that's part of it?

Anyway, take care all!
Diana Tweet