From the early years of my illness, I remember twice experiencing this kind of extreme disorientation.
Maybe for me it was kind of like the feeling you have when you first wake from an intense dream and it takes a moment for your mind to seperate the dream from reality - or like when you wake up in place that isn't home, and you can't recall at first where you are or why you're there.
Both times I experienced this disorientation though, I was in public places. The first time was at a restaurant, and when I sat down, it was like my mind had been wiped clean, and I had no idea where I was or why, etc. The other time was when I walked out of a store. That time I was alone, and it was very unsettling.
Like most of us, it took forever to get proper medical care. I was eventually diagnosed with Lyme (neuroborreliosis) and co-infections.
I haven't experienced this type of disorientation since the early years of my illness - just to say that there's hope that such symptoms will go away with time, though it may be years. I also, early-on experienced an intense burning sensation on my skin at times, which sounds like what justy described. This also went away, with time.
Antibiotics were obviously important to kill the infections. I also experimented a lot with my diet in order to avoid foods that worsened symptoms. And I avoided perfumed laundry detergent, soap, shampoo, etc.
Justy, I also experienced something that sounds like what you said with your brain moving. What I experienced made me think that it was like there was a magnet outside my head and my brain was being pulled toward it. I also experienced some mild jerking early on - and for me this was my head involuntary twitching a bit. The magnet feeling and the twitching didn't happen together, and they happened frequently but not everyday.
I still but extremely rarely twitch. I've also had some neck injuries in the past and arthritis in my neck, so perhaps those have made me more vulnerable in that regard. I haven't experienced the brain-pulling sensation in a long time - so knock on wood, this has now completely passed as well.
During all this time (and with far worse symptoms as well), the "doctors" were horrid, cruel, evil, ignorant monsters.
I had to seek private care in another country to get any help. But I did get help from kind and intelligent humans - real doctors! - and with time, the symptoms I described above have (largely) faded away. Hope that helps give hope that you can continue to heal with time.
