PMR: Pain moving around your body

@johnbishop oh my word that sounds just like my pain! Sometimes it is in the pad of my thumb and it will get so inflammed and red and can barely move it. It moves from my wrists, fingers and shoulders and I can barely move and it just comes out of the blue. I actually had to call out of work cause it was in both wrists last week, i feel so handicapped when happens! What can i do when have flare ups to maybe help with the severe almost paralyzing pain?

Welcome @micmc73, Sorry to hear that you are having so much pain when it flares. Have you been seen by a doctor or rheumatologist to see if they can determine the cause?

@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?

@micmc73 So sorry to hear you haven't been able to get affordable health insurance. I did see some suggestions on this site for what to do when you don't have insurance that might offer some suggestions - https://nafcclinics.org/i-dont-have-insurance-how-to-get-the-healthcare-you-need/. Have you looked into any local or state healthcare services?

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.

PMR is a diagnosis of exclusion. Rule everything else out and what is left is PMR. After hearing all the stories and experiences here, I'm convinced that PMR is not one disorder, but several similar disorders lumped together. That would account for symptoms being different and effective prednisone dosage being different. As if that's not enough, it's not unusual to have PMR and something else. In my case, it took 25mg prednisone to relieve my hip girdle pain but it only dulled my neck, shoulder and upper arm pain. Turns out I also have SMM. Our journeys are different but our pain is shared, as is our frustration at being compromised by this.

What aggravates me is at work they look at me like im just making it up cause the pain is always jumping around but it does seem consistent to be in fingers, wrist, elbows and upper arms. And my lower back hurts all time and found out not long ago my hip pops out of place. Not sure how that happens! But if they only understood this is pain id never pretend about! Im a night auditor at a hotel and have worked at same location going on 5 yrs and ive noticed folding sheets aggravate it bad! Has anyone noticed if any kind of pain or muscle rub helps at all? I cant afford going to doctor and at the clinic if you are not homeless they feel you can afford it! Feel as im just trying to grasp anything that will help and give any semblance of comfort! Maybe i shouldnt have been such a tomboy and rough on myself as a kid, im paying for it now 🙂 🙁

@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….

@micmc73 are you located in a state that allows medical marijuana? Those salves work, as well as Rick Simpson Oil which functions three ways depending on how you take it. Omg, it’s marvelous. Then magnesium epsom salt baths with high concentrates. Soak for a minimum of 20 minutes, and hydrate! My foot cramps are so bad I can’t walk until it gets rubbed out. Just for reference.

@micmc73 give yourself space and grace. Because it’s going to happen whether you like it or not, so be gentle about it. When mine comes one, I have a plethora of self soothing things to engage in, a book, movie, eat something sinfully sweet or salty. Sometimes I’ll ask friends over and tell them ahead of time I need cheering. . Engage in something if possible which takes your mind off of the situation, but feeds your heart and mind with positive instead. That’s what my doctor said to do. It’s better than the alternative for me, seems a negative perspective is often the first option which pops up in my head.