penn,
This is horrible!!! I have Primary Sjögren's, but am seronegative with biopsy positive, 4 years ago. No one has ever mentioned any treatments to me, I figured it was because either I am seronegative or my doctors are all idiots, which they truly are.
I am am VERY MUCH interested in your whole story. Truly, from what triggered your diagnosis to all this horrible stuff.
I am sure I have SFN, not bothered to get tested. I have CIC, 17 years, nothing works. 3 small bowel partial obstructions, 4 complete impactions in anus-required digital removals, by myself (OMG they hurt!!) I have motility issues probably related to ANS issues and Hyperparathyroidism with elevated calcium, these all affect smooth muscle movements. I just had surgery for the HPTH.
All I know about my pSS, is from my research, my doctor and RH are less than useless. So, I really would like anything you want to share.
I have other medical issues that I have taken a break from pursuing new doctors.
Have you tried ice, heat or lidocaine 4%(unless you have a script for higher doses)?
Look forward to hearing from you. Take good care of yourself. ShelleyW
I do not know how all of your mentioned stuff is related, I would like to know.