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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Sep 10 12:05pm | Replies (1906)Comment receiving replies
My first bout of PMR started the morning after I did a 5-mile run/walk. I had been exercising daily, but tried to go faster. The next morning I was really stiff, but thought it was normal stiffness after a new activity. It got worse and worse. Eventually I couldn’t turn over in bed at night and riding in a car left me so stiff I couldn’t move at first. I tried stretching, etc before I finally saw my internal medicine doctor. I was working in a small clinic so talked to her before my appt and she ordered a lot of labs. Highly elevated sed rates, classic presentation led to immediate diagnosis and I saw a rheumatologist that day. I was on prednisone for 2 years. My latest bout came about about 3 weeks following a cortisone shot in my knee and removal of 60 cc’s of fluid. Seems to be related. I am now on about my 14th month of prednisone, trying to be patient about decreasing. It never seemed to be related to vaccines as I went 12 years between bouts and had flu vaccine yearly, Shingrix and pneumonia vaccines with no ill effects. It is a strange thing to have. I like this forum, as no one else I know has this and your posts help me.
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Like you, I thought exercise was the culprit. Soon after I turned 66 last year I did an intense session of sliding lunges for the first time. A week later soreness and stiffness began and I (and my PCP) thought I had tiny tears in my thigh muscles. It never went away and got worse. Getting out of a car, in and out of bed, up and down in any form was painful and sometimes impossible. Extreme fatigue. It was puzzling. It took 4 months for me to get diagnosed after my upper arms and shoulders started to hurt as well.
My PCP ordered labs and inflammatory markers were high (SED rate 84). Prednisone, while problematic, gave me a normal life again, for which I am grateful. I have been on it since diagnosis in late October 2020 and am on 10 mg now. I hope the rheumatologist will lower it when I see him in March.
For so long I wondered "what's wrong with me?" It is such a strange and debilitating disease. Never felt like that before. I am also somewhat relieved it wasn't the intense exercise at all! In fact, I rejoined the gym and have started to exercise again, thank God.
In my case the possible trigger was loss of a loved one, loss of my dog, and lots of peripheral stress. I have read that trauma can trigger autoimmunes.
I appreciate this forum as well. No one else knows about this disease or can understand what you've gone through. Helpful to share info. Thank you for sharing yours.