@ajidzior Hi Amy - I am so sorry for all that you’re going through. I can’t offer much help, only virtual support, but I have a couple thoughts/questions.
1. Have you seen a neurologist?
2. Have they considered autonomic dysfunction? Or POTS?
3. Have they tested for Sjögren’s syndrome?
Many autoimmune diseases are very difficult to uncover. If you haven’t seen a neurologist yet, you may consider that. I have some similar symptoms but definitely some differences and after years of being undiagnosed, I finally went to a neurologist and got answers. I have POTS, autonomic dysfunction and small fibers neuropathy (idiopathic). I’ve heard that illnesses such as mono and COVID can cause some of these conditions.
I’m sorry I can’t offer much help but I am here to support as are many others in this forum. Please continue to reach out. You’re doing all the right things by being an advocate for your own health. I hope you find answers soon.
Wishing you well,
Robyn