Hello,
All going ok, relatively speaking. I am at a pretty constant state where I’m happy living with where things are, and perhaps will be forever.
Not cured/gone by any means, but still fluctuating between great days and decent days.
Still walking many miles a week and yes my legs tire afterwards but no big deal.
The bad days are usually when I don’t get enough sleep or I’m sick. The calves will really act up and pop like crazy then.
It still “moves around” on me too. For example a couple of weeks ago the vibrations flared up inside my chest. Very annoying at night! Same as usual, as I regain consciousness, they calm a lot.
I’m still taking the gabakentin. Not sure if it helps or makes a difference.
One interesting thing since I’ve written here a while ago is that over the past 2 years I’ve gotten pretty bad plantar fasciitis in my one foot. A large cause of PF can be tightness in the calves. I have a hunch that the BFS is at the root cause of why I can’t seem to get rid of the PF despite lots of treatments short of surgery.
Hang in there!
I see. I had a similar thing where I was traveling in Europe and during the trip every day it was getting better, where towards the end it was only noticeable when I woke up at night my legs would vibrate, but then I got back to the states and the first night was ok but every day after it got worse and worse again and now its back to how it was originally which is super disappointing. I wonder why it changes like that? If there was brain damage wouldn't that mean you could never get to the great state? So I kind of wonder if something else is going on.
I found out I have high levels of mercury, 31.8 ug/L in my blood whereas 0-15 was considered normal, so it could be that. I also wonder if it could be a pinch in my spine as my neck has always been pushed forward due to years of computer work.
When I'm tired or drink a lot of coffee it definitely is worse than when I sleep a lot. But it's hard to sleep a lot when you wake up with your whole body vibrating and then it becomes hard to go back to sleep.