1. < Polymyalgia Rheumatica (PMR)
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PMR: Pain moving around your body

Posted by theref @theref, Sep 4, 2022

Hi, I got diagnosed with PMR about a month ago and have been in constant pain since then. I’m working with my Doc trying to get the Prednisone dosage sorted but everyday is pretty rough, walking being pretty difficult until early/mid afternoon. I’ve noticed that the pain moves randomly between my knees, hips me shoulders with the pain each day being stronger in different parts of my body. And today completely out of the blue one of my elbows has become quite painful - random!!! The joys of PMR!! Wondering if this is common with others? Thanks

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kjoed53 | @kjoed53 | May 17 2:04pm
In reply to @clendenin "@kjoed53 SMM? I’m wondering if you perhaps are referring to smoldering multiple myeloma? My mother had..." + (show)
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@kjoed53 SMM?

I’m wondering if you perhaps are referring to smoldering multiple myeloma? My mother had that, and initially my blood work looked as if that was the case for me with the presence of protein m. I went from intravenous steroids, to 60 mg with a gradual agonizing taper with Actemrya shots finally. Blood work has been normal. Some pain though, strange stiffness in my hands, muscle cramps and extreme fatigue sometimes, are the main symptoms now two years out. I’m sort of in remission. But I wonder where this goes next….

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@clendenin
Yes, I have smoldering multiple myeloma in addition to PMR. Prednisone brings down the numbers (M-spike, free Kappa Lt chains and kappa lambda ratio) that are part of the formula to differentiate between low, intermediate and high risk SMM. On prednisone, my numbers fall in the low risk, but I need to get off the prednisone to see the real risk. I'm on 17.5mg now and if all goes well I'll be down to 15mg in 7 days. I need to commit to staying hydrated so I don't get cramps or the BP/HR issues I can get with dehydration.

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ampmr2025 | @ampmr2025 | May 18 9:29am
In reply to @abd "Good to read all the comments and know that others have the same “odd” experiences. Pain..." + (show)
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Good to read all the comments and know that others have the same “odd” experiences. Pain jumps around with PMR. My issues do stay consistently painful in hands, wrists, upper arms and shoulders. Back, ankles, feet seem to come and go - from ache and stiffness to a jabbing pain. Mornings the body is stiff and takes a bit to get moving, then can move quite freely until stopping and restarting.
Had Carpal tunnel surgery on both wrists. Doctor found and removed much packed inflamed tissue. Sent to a Pain management doctor and diagnosed with PMR. Was on Prednisone and sent to a Rheumatologist. Tapered me off Prednisone. He is looking, also, at Rheumatoid Arthritis without the RH factor. Was going to begin Methotrexate but began breaking out in these “eruptions”. Needed to know cause before beginning medication. These eruptions came in twos every couple of weeks and had 6 of these. Sent to a Dermatologist and said an allergic reaction to an insect bite. Believe I am finished with that and go back to Rheumatologist next week.
I have always been very active so the fatigue and constant issues are wearing me down. I have spoken to my Dentist and Ophthalmologist (at appointments) and found them very supportive and informational.
Thanks for listening.

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@abd i have also had inflammation around sites of mosquito bites….conclusion of Dr. was plausible that with PMR DIAGNOSIS…my “over- excited” immune system was attacking the bite sites to protect from disease entering the body.

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jabrown0407 | @jabrown0407 | May 18 11:15pm
In reply to @micmc73 "@johnbishop no ive just researched my symptoms and i ran across this site and when i..." + (show)
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@johnbishop no ive just researched my symptoms and i ran across this site and when i read the blogs on this particular one i said this is it fits me to a T with everything. I dont have insurance been trying to get affordable insurance but even its not very affordable. So kinda stuck and not sure what to do! Is there anything i can do on my own to help with pain and the flare ups?

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@micmc73 Since you do not have insurance you might consider looking at the website FindHelp.org - it is ZIP Code based and has a selection for Health which should point you to the free and low-cost clinics in your area. That site has selections for Food, Goods, Housing, Legal, and many other areas of support for those in need. Take Care of yourself and thanks for posting on Mayo Connect.

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