Hang in there, please!
You found a doc who diagnosed you! That is your first lucky break. Depending on your meds? They could explain your exhaustion, not to mention the ‘assault’ on your body this immune stuff does to you…
I found that I got both my mind and part of my body back by changing off of neurontin to another med. I’d been sleeping 16-18 hours a day on the neurontin and I had to change neuros after a second opinion. I’d even fall asleep in the middle of a sentence and wake up 30 minutes later and complete it! We each are different in how we tolerate the different meds possible to help w/our pain. And we each get different side-effects as well!
To get back into some sort of action plan? I suggest you talk w/your neruo and get not only a list of Physical Therapy places, but maybe get names of therapists? You don’t want anyone who is like an army drill sargent! You want someone who respects your condition and helps you make the MOST within your limits. I have found doing short reps – repeated thruout the session, rather than all at once, work best for me. Having simple exercises to do at home that are safe helps also so you can do them at your own pace. I hope this helps YOU? I know it’s hard to ‘get back’ but the more you do, the better it can be in the long run. Keep faith in your instincts as to right/wrong. YOU are likely right! – Hope and good things!