Thx for all the great info nyx.
The "doc" I referred to is a rheum. She is really excellent and very smart, but her head is in June, when she'll be leaving medicine to spend more time with her very young son. I don't blame her, but it's a huge loss.

I'm very frustrated because I need to find someone who will run all tests that rich people get to find out what the hell is going on. And no one wants to do that. So many people are diagnosed by whether or not pred works for their bi-lateral, sometimes even uni-lateral pain. I can't take steroids and need someone to work with me to try LDN or something else that might help and is gentler on the mind and body, but first of all, I want a better diagnosis. Just because pred works does not make ALL OK.

I was not tested for Lyme's, would be glad to have it at this point. But I don't think I do from the description. It seems like PMR to me and I don't want to argue with docs about it. Every single medication has horrible side effects, even Advil! By the time you reach 70+, most of us have some issues that will be affected by almost any medication. I'm looking for the best treatment with the least side effects. I have too many contraindications to take pred.

I don't recall if I said this or not above, but my last appt with the rheum, after my US, she said she didn't think I had PMR. But I'm pretty sure I do. She had no answers for me, like I said, she's out the door. Said to switch from Advil to Xtra Strength Tylenol. The backs of my knees had been painful for weeks and I told her. She looked and said I had large Baker's cysts, but draining wouldn't help for long, neither would cort shots. My kneecaps, at this point, also hurt and I am afraid they are being destroyed. Read that they can begin slipping or something from these cysts.

Anyway, I am frustrated and trying to find help, but these days, it can be next to impossible to find other than a robot. And if I could find one that could help me, that would be awesome.

Wishing you the best.