1. < Polymyalgia Rheumatica (PMR)

Where have you experienced pain due to PMR?H

Posted by 23amy @23amy, May 4 11:45am

I was diagnosed last year with PMR by my rheumatologist at the age of 50. I am trying to understand this thing. I'm wanting to know where you all have experienced pain in your body due to PMR.

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barb26 | @barb26 | May 30 12:56pm
In reply to @zkeith "It is a weird disease. Sometimes before starting treatment, I had to use one hand/arm to..." + (show)
@zkeith

It is a weird disease. Sometimes before starting treatment, I had to use one hand/arm to hold onto the other hand/arm just so I could get that hand/arm
where I wanted it to be. Double the pain, double the misery! I am going to need PT to get my strength back.

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Oh, I hear you on that! I was even having trouble turning the steering wheel when driving. It is a weird disease.

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barb26 | @barb26 | May 30 1:01pm
In reply to @grandmap "I was so glad to read this, because I am having terrible pain in my calves..." + (show)
@grandmap

I was so glad to read this, because I am having terrible pain in my calves and stiffness when I walk, it's like the Tin Man of the Wizard of OZ. I am on 15 mg prednisone and this started about 4 days ago. Up till then, it was pain in my shoulders and overwhelming fatigue. I also have other weird symptoms, like heat radiating from my hands and upper arms. I guess if it's myalgia, it can affect your muscles as well as your joints.... Anyone else experiencing the calf pain or heat in the hands, arms?

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Similar. I know it sounds weird but feeling for me is like a really bad sunburn.

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rlstonejr | @rlstonejr | 5 days ago

PMR started 11 yrs ago in hip girdle area - lower back, hips, glutes, and hamstrings. Then started in shoulders and arms. I am at 6mgs pred daily and have one or two flares per yr. Flares usually affect shoulders, hips, rt hand and rt Achilles. Often accompanied by PMR fatigue. Used to also come with brain fog, but not recently.

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linda7 | @linda7 | 5 days ago

My PMR started suddenly in 2021 and one morning I couldn't get out of bed. The worst overall pain was a burning sensation that went across from one shoulder to the other and there were bizarre sudden pains like someone was stabbing me with a knife under my shoulder blades. It also affected my hips and legs and it hurt to walk more than a block. Beforehand I was able to do mountain hikes and 10 mile bike rides. It almost felt like a movement disorder because even a small motion would cause severe pain and before I could move another few inches that pain had to subside. The only way around it was to move very slowly with either arms or legs. I also had a headache at my left temple. For an active person the loss of function was almost worse than the pain! Four years into this the pain is under control with prednisone and now Actemra but I have flare-ups and can't get off the drugs yet.

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