I have had three rheumy's one who diagnosed PMR by looking at me, of course it took a year of pain and doctors before I saw her. Then the pandemic hit and at my second appointment with her a month later I was the first patient she told that she was stepping back from practicing since her husband was a hospitalist. The next rheumy just shook his head and pushed oral steroids. The third rheumy, the one I have now, keeps saying everyone's PMR is different so little focus on separating PMR problems from other organic problems. That job has clearly become mine.

I refer to the process as peeling the onion and I have had to fight for doctors to pay attention to me. PMR, because so much is unknown, is the perfect problem to hide things. Yes, it is true that PMR does cause problems and some of them are not nice or even easy to live with. However there are other problems like trochanter bursitis which is a common problem with PMR sufferers. It can be easily addresses with guided steroid injections. This is how it might be treated if it appeared in a non-PMR patient. For PMR patients it is often overlooked, not looked for and otherwise lumped in with leg and hip girdle pain. Just take a little more steroids to kick the pain - no thank you. I first self-diagnosed it. Fortunately I had an angel of a hip doctor who immediately treated it - it just took two years to find him and now he is retired.

I am now facing abdominal pain that appears to be caused by tumors. I cannot say how long it took to get a doctor to take a serious look at unusual abdominal pain, actually two ER visits finally did it - if I had only known. I also have unilateral shoulder pain that causes my BP to be 20-30 points higher in that arm and doctors still want to lump it into PMR. I've been tested for blood clots, not that, so back to PMR as the standby cause.

PMR is a journey for sure. I live in Dallas and we have top doctors so it is not for lack of skilled and knowledgeable care.

Am I frustrated, absolutely, but I am not willing to quit seeing doctors. I need the care. It is simply a matter of finding one who will believe in me long enough to make a difference and then pray they are still practicing 90 days later.

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