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@jabrown0407

Where do you live? Is it in an area with a teaching hospital? If so you might consider seeing a doctor there - they might be better suited to help you. I agree that rheumatology is iffy at best. I have had vague and incomplete answers from the ones I have seen. I do my best to work with them because I actually have a problem that is in their wheelhouse, however little is known about it and the most common reply I get is "every patient is different".
Doctors in practice not a part of a teaching environment are less prepared to work with patients that do not have mainstream problems. Insurance companies have seen to it that your appointment is short, targeted and with an assumption that there is a medicine that can be Rx-ed once the tests reveal the problem.
Mayo Clinic has a referral service as does Cleveland Clinic and I suspect several other major medical schools offer the same type service. I would think that consulting services would enable you to have them see you but have your local doctors treat you. My experience is that teaching environments are open to consulting with another specialty whereas that mind set is uncommon in the private practice world.
I have been fighting multiple problems for years, brought on by an adverse reaction to a vaccination 5 years ago. It is not easy to unwind the symptoms to find a treatable problem.
I have had 95% of the tests to come back normal - yet not one doctor has ever said I am well, or it is in my mind - they agree the problems are real, but finding solutions is difficult.
BTW - I had a doctor 50 years ago tell me that menstrual cramps were in my mind - I was denying my childbearing role in society. He said it was all in my mind, needed mental eval. He was wrong - I was right. You know how you feel. Walk away from any doctor who you believe is not helping you.

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Replies to "Where do you live? Is it in an area with a teaching hospital? If so you..."

I am in Florida. I think there is a Mayo Clinic in Jacksonville but I am on the west coast. I actually work for a hospital and am fortunate to have decent healthcare coverage but it is limited to our network.
I know the experience of being dismissed about exaggerated period cramps. I cried, missed school, threw up, was unable to walk and had doctors tell me to take ibuprofen. 14 years of that and finally had a doctor do exploratory surgery to find a birth defect requiring a partial removal of the top of my uterus that was causing serious issues in my body. The years of dismal of pain and being told to tone down my anxiety has created a lot self doubt and more anxiety within myself.
I’m sorry you have experienced that as well, but I am glad you now have healthcare providers acknowledging you.
Thank you for your advice.

JA Brown - I agree with all you said!
Especially re longtime doctors- especially Rheumatologist!
My experience exactly! (Palo Alto, CA) God bless us all! Donna
Good luck