Quote:
Originally Posted by Wide-O
Well, you asked! 
The quotes are because some of the time I'm feeling quite good, and the more I manage my diet and my stress levels, the longer those periods last. But I started out with severe burning, stabbing, feeling like walking on crushed glass, feeling like both feet were broken, someone cutting my soles with a box cutter, and, from time to time, cramps in my toes that make my left foot look like it is going solo and wants a life of its own, big toe bending outwards like it is going to snap off. I can not really "feel" my toes, but when I do it feels like they are encased in cement. I also feel like I just walked 50 miles in bad shoes.
The EMG showed that apart from the suspected PN I also damaged my sural nerves starting a few inches under my knees. (which is part of the poly-neuropathy diagnosis)
The good periods make me feel I should go back to work (I had my own company), the bad ones make it clear I'm not up to it - not even close. I feel a lot better than when I started out, no doubt about it, but that progress stops at some point, which is typical for PN.
So those quotes are doing some heavy lifting. |
Really sorry to hear that you have those types of symptoms. You did a way better job at describing my neuropathy than I've been able to ever do. Thanks so much as I makes me feel a lot less crazy hearing it for someone else.
The EMG tests were conclusive for me too. They knew right away that I had it based on that test. I never needed a biopsy or MRI or any other tests.
I too worry about the plateau of improving. I recently had another milestone that I thought I would share. I am a big fan of live music. When I came back home to NYC after being in treatment last August, I remember my first show that I saw and I was unable to stand up at a concert for more than 10 at a time. I would need to lean on something or take breaks sitting, or just sit the entire show.
Over labor day weekend I saw music 4 nights in a row. I was able to keep on the move cause the venue allowed for it, but rarely needed to sit, so that's an absolutely massive improvement than where I was a year ago. It's amazing what being with a group of people, with your adrenaline pumping can do for your strength. I find we are capable of a lot more than we think.
Neuropathy can be funny as I think we all know. The pain is still there in the same way, but I've gained strength. I have heard time and time again that it makes you weak, and I am sure that is part of it. But perhaps its also that there was muscle atrophy in my case as I was so sedentary for many years leading up to putting down the bottle?
Either way, I am happy with the improvements and hope that staying focused on diet and exercise can lead to more. Trying to make the most of my 40's as it seems that this doesn't get any easier as the time goes by.