Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

I am sorry it took so long to diagnose you -- I can empathize because I had a similar experience. I thought that extreme exercising injured my thigh muscles and pain started in late April. It got more and more debilitating (hips down to knees but no arms yet), saw doc first time in early July and blood work was crazy - high platelets, severe anemia. I had taken NSAIDS daily for pain for 2 months so my PCP thought anemia might be stomach bleeding. Pain in thighs was not really addressed. I was put on nexium and she sent me to a hematologist who treated the anemia with infusions and almost did a bone biopsy but platelets had come down some. She had earlier thought I had either broken a hip (did an x-ray) or that my bad back was causing my legs to hurt (ordered PT which I couldn't even go to if I wanted to due to PMR pain and fatigue). I saw my PCP twice after that plus the hemodoc and when my arms and neck started to really hurt I went back to her on Oct. 20. I had by now looked up my symptoms (pain in thighs, hips, upper arms etc.) and thought I had PMR, but I let my doc come to that conclusion, which she did. I started on 20 prednisone and within 3 days was feeling more like myself. PMR did such a number on me that the person in the mirror looked like an old, sick version of me, and a scary one. She referred me to a rheumatologist (first appt. Dec. 9) and he has me on 10. So it's been quite a journey and not over yet. I see him again in March and am hopeful he will cut the 10 down a little. I realize that slow tapering is the best for long term remission, but like all of us, am anxious to not be on prednisone for too long. And, like all of us, am so grateful to be feeling better on it. At my worst I took 3 naps a day and did the minimum to get through life (I live alone). Covid did me a favor and the library I work at was closed for May and June and then we worked part time until Sept. I could not have worked full time if my life depended on it at my worst. Good news about this disease is that it does no damage to muscles, ligaments, or joints - yay! We have to stick out the treatment and hope it's shorter rather than longer!

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Sorry you had such a difficult road to get to PMR diagnosis! I had never heard of PMR, so I had no clue what was going on with my body. Like you, I found the fatigue overwhelming—especially in the beginning. My PCP referred me to Rheumatologist, took 2 mos to get in—first thing she said when I told her about my swollen hand was that PMR doesn’t affect hands!!—I was so disappointed I could have cried!—never went back. So my PCP & I are a team— both learning as we go! You’re right, how lucky that PMR doesn’t result in permanent damage to muscles, ligaments & joints—loss of strength can improve with exercise/therapy. Hope you continue to improve!

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I am sorry it took so long to diagnose you -- I can empathize because I had a similar experience. I thought that extreme exercising injured my thigh muscles and pain started in late April. It got more and more debilitating (hips down to knees but no arms yet), saw doc first time in early July and blood work was crazy - high platelets, severe anemia. I had taken NSAIDS daily for pain for 2 months so my PCP thought anemia might be stomach bleeding. Pain in thighs was not really addressed. I was put on nexium and she sent me to a hematologist who treated the anemia with infusions and almost did a bone biopsy but platelets had come down some. She had earlier thought I had either broken a hip (did an x-ray) or that my bad back was causing my legs to hurt (ordered PT which I couldn't even go to if I wanted to due to PMR pain and fatigue). I saw my PCP twice after that plus the hemodoc and when my arms and neck started to really hurt I went back to her on Oct. 20. I had by now looked up my symptoms (pain in thighs, hips, upper arms etc.) and thought I had PMR, but I let my doc come to that conclusion, which she did. I started on 20 prednisone and within 3 days was feeling more like myself. PMR did such a number on me that the person in the mirror looked like an old, sick version of me, and a scary one. She referred me to a rheumatologist (first appt. Dec. 9) and he has me on 10. So it's been quite a journey and not over yet. I see him again in March and am hopeful he will cut the 10 down a little. I realize that slow tapering is the best for long term remission, but like all of us, am anxious to not be on prednisone for too long. And, like all of us, am so grateful to be feeling better on it. At my worst I took 3 naps a day and did the minimum to get through life (I live alone). Covid did me a favor and the library I work at was closed for May and June and then we worked part time until Sept. I could not have worked full time if my life depended on it at my worst. Good news about this disease is that it does no damage to muscles, ligaments, or joints - yay! We have to stick out the treatment and hope it's shorter rather than longer!

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Thank you for sharing. I’m waiting on my next appointment to see what my limitations for exercise will be. I don’t want to do more damage but I need to exercise and strengthen my muscles. I think I will be worse off if I don’t have a recovery plan

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I am in my 3rd bout of PMR. My first was in my 50’s and I was an avid exerciser. My rheumatologist at that time said I should do range of motion exercises, but no weights over 2 pounds due to risk of tendenitis. I continued with aerobic classes, walking rather than running, light weights. I did get tendonitis twice from overdoing and benefited from Physical Therapy. I am now 73 and on my 3rd bout of PMR. I walk 60 minutes a day and do an on-line aerobic class with light weights 2-3 times a week. I think the range of motion exercise is really good, but I have avoided heavy weights. I have talked with physical therapists, but I often have to explain what PMR is.

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Thank you for sharing. I’m waiting on my next appointment to see what my limitations for exercise will be. I don’t want to do more damage but I need to exercise and strengthen my muscles. I think I will be worse off if I don’t have a recovery plan

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Hello @moni54, Welcome to Connect. Thanks for sharing your PMR story. I'm with you on the rather be on a lower dose of prednisone crowd but pain is the boss when it comes to PMR and tapering. I've had 2 occurrences which my Mayo rheumatologist started me on 20 mg prednisone for both occurrences. I was told to take it slow and easy when tapering and listen to what my body was telling me. I found I could live with a little pain or discomfort which probably like you was around a 1-2 on the pain scale. I didn't tolerate the 1-2 well for my first occurrence with PMR and it took me 3-1/2 years to taper off. Six years later when the PMR came out of remission it took me about 1-1/2 years to taper off and the 1-2 on the pain scale was normally for the first few days after tapering to a lower dose. The last six months of each I tapered by 1 mg or 1/2 mg on a week or two week schedule. My rheumatologist really helped me with the tapering schedule when I had any questions.

Have you asked your rheumatologist on the possibility of splitting your dose and taking some in the morning and some in the evening to see if that helps reduce the pain/discomfort in the morning?

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