I am not sure how high your ANA titer is, but I have been told that once it is positive, it is always positive, so it is strange that yours was abnormal, then normal, then abnormal.

Even with an ANA of 1:5120 (normal < 40) diagnosis for me was/is uncertain. And a biopsy that was positive. Rheumatology diagnosis can sometimes take years, as you know, and for, say, lupus, there are specific symptoms such as Raynaud's, mouth sores, etc. and certain lab tests (antids-DNA).

The main thing that rheumatologists seem to monitor for is internal damage (kidneys, lungs, heart, brain). Are you being monitored?

My daughter and I both have diagnoses of lupus and I have extremely high antibodies for scleroderma but no diagnosis because I don't have typical symptoms. But am being monitored.

We don't want any diagnosis because we cannot take steroids, for different reasons, or Plaquenil, and the heavy duty immune suppressants are concerning. So far, with no internal damage, we are both not medicating as yet. If you did get a diagnosis, how would you feel about those medications?

Pain management clinics are not about pills. Some programs have an MD, PT, OT and behavioral health. That kind of program would also provide the listening time and understanding that can help so much for pain. I hope you can find a good one. There are also medications that might help that are okay for sobriety.