@303wendy -
I am so sorry to hear this. And I really feel for you.

This is exactly what happened to me. The referral to Neuro or Pain.
I kept telling them, I was not going to take pain medication when I feel this systemically unwell.

I’ve dealt with pain before this was not that kind of pain. Otherwise I could have been able to navigate through that.

When I went for 2nd opinion I was told to do Budesonide rinse/w topical antibiotic. This made me feel worse as well. And I could not continue do to worsening symptoms from rinsing.