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Can PMR come on more gradually?
Polymyalgia Rheumatica (PMR) | Last Active: Jul 4, 2023 | Replies (22)Comment receiving replies
Me too, one shoulder started feeling inflammatory months before, then I tore a hamstring which took a month to get better, then suddenly the inner hips had me crouching to even walk. I was playing an excessive amount of pickleball and blamed it on that, I truly thought I needed an orthopedist and was thinking I suddenly had severe osteoarthritis and needed a double hip replacement. Never a twinge from either hip in my life, age 71.
It dawned on me that this was PMR when BOTH shoulders and hips suddenly hurt equally. I couldn't get out of bed. I started 20mg myself, no doctor, tho my husband is an internist and we always have lots of steroids on hand at home.
Meanwhile no rheum in our area will take PMR patients, they expect primary care docs to deal with it. Medicare pays nothing and there are a lot of us with PMR. Patients end up managing their own tapers anyway and it can go on for years.
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I completely agree about patients needing to manage on their own… I just end up feeling like a football being tossed between a rheumatologist, PCP and other specialists. Everyone shrugs and says, “Not it.”
I have fibromyalgia, and it’s like that—my rheumatologist (who treats me for a different condition) told me she’s able to be “selective” and doesn’t treat fibromyalgia, which is typically treated by a PCP (???) My dad is the one with PMR.
Thankfully, we did find a rheumatologist who treats PMR and she’s very nice. But most of the decisions and interpretation fall on us.
After seeing him go through all his health conditions (he had a stroke last year 2 weeks after diagnosis of PMR), I’m convinced he would have died if not for my mom’s and my experience knowing we’d have to advocate for him in the medical system. She’s a retired RN and I’m used to being dismissed from having chronic pain conditions. Still, I didn’t realize it would he so hard to get help, get coverage, and get providers to listen. I wished I would have been able to prescribe what he needs!