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3 1/2 years of chronic pain~ Still looking for solutions~please help

Polymyalgia Rheumatica (PMR) | Last Active: May 27 10:56am | Replies (27)
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@tuckerp

Wow. Lots going on. You will find most of us spent considerable time trying to figure out what was wrong. Orthopedics, xrays, Dr appts, PA appts. Just about anything and they all take time. Meanwhile your pain is driving you nuts. Their is also a site on facebook with lots of information. The medical field has not been the best at diagnosing. Not sure of your age but if your younger than 50 they will rule it out. Even if thats not true. The two inflammation markers that most have is CRP and sed rate. However not everyone has those markers. Eventually the diagnosis may come down to the fact whether prednisone fixes it. Your PA or family Dr may be able to help at first but they will want a rheumatologist to diagnosis. Newer drugs like Kevzara target the IL-6 and help with inflammation. I had my PA run all the blood tests. They will want to run lots of stuff to rule out what it is not. I can send you a list of items I asked for. I got the list off the facebook page. The journey down the prednisone trail can be difficult to come off of. But it does stop the pain.

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Replies to "Wow. Lots going on. You will find most of us spent considerable time trying to figure..."
nowforyou | @nowforyou | May 20 7:49am

Good morning,
Thank you so very much for all of the wonderful information. I am going to be 61 in a few days so I was definitely over 50 when this started 3 and 1/2 years ago.

My CK was high but not off the charts high when they performed the test about a month after going off simvastatin. They have performed a CPK, CK as well as said rates several times over the last few years and they're not out of range anymore.

I have never been on oral prednisone, other than a few months before all this started and I had some sort of virus in my lungs according to the pulmonologist. I couldn't breathe and they had to put me on oxygen, a nebulizer and prednisone for a couple weeks. Never was determined what I had. In light of COVID emerging a few months after that, they now say that it may have been COVID.

It's a tough situation indeed. And I have a lot of respect and empathy for anyone going through this. If I spend too long sitting even by 10 minutes too long, I pay for it for the rest of the day.

Hopefully I will be able to get some answers this Wednesday when I speak with my MD.

Thanks again for all your help! And good luck with your journey.
Kate

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