Bilateral Muscle Pain in Arms, Legs, Neck and Shoulders

Perhaps your doctor would be willing to prescribe a short course of Prednisone to rule out pmr. If your pain goes away in a day or two it would likely indicate pmr.

It's interesting that myalgia, as in polymyalgia, literally means muscles. We refer to PMR as a joint condition, but the muscles and fleshy bits around the joints is where the pain really is. As you say, when we don't move, there is no pain. I certainly recall the terrible muscle pain when trying to stand or sit, it was not just the joints. And I do recall pre-medication that any slight exercise made the muscles not close to joints hurt as well.

Sudden onset is a telltale of PMR, you wake one morning and there it is. How did your ailment start?

Sounds familiar, like Edward’s said, tell your Doc you would like to try a course of Pred.

Hello @1niceguy, I would like to add my welcome to Connect along with @edwardh, @megz and @southtexas. I'm sorry to hear your doctors have not been able to figure out what is causing your pain. You might want to look through this article to learn more about other conditions that mimic PMR to see if anything lines up with your symptoms.

--- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

Have they tried u on prednisone? If it PMR the aches will disappear within an hr or so of taking. Just a thought

@1niceguy may i ask how old are you ?? When i told my boss about my likely Dx of PMR , and he mentioned to his parents in Scotland , he was shocked to hear that his sister's doctor's thought SHE might have PMR- meaning he was hearing about PMR twice in one week ! Anyway ,she is not yet 50 yrs old - turns out she had low vitamin D !!
So, i provide this as an interesting story-- and that you have been able to be seen by TWO Rheumatologists seems unlike other people's experiences ! where do live ?

I also remember this column from the NYT : https://www.nytimes.com/2019/06/05/magazine/hip-shoulder-pain-polymyalgia-rheumatica-diagnosis.html. spoiler alert: Lyme and PMR were NOT the cause - it was a fungal infection

Not sure how much Googling you like to do :

CASE REPORT. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8978782/
Chronic Candida albicans meningitis misdiagnosed as
polymyalgia rheumatica and successfully treated with
voriconazole

Boy that sounds like me. Couldn't shower, put on a coat, or even use my arms to get into bed. You say they have ruled out PMR. It was ruled out for me for many years because of negative blood tests but I knew I had all the symptoms. Finally it has come out that some percentage of people with PMR don't have the abnormal blood tests. Good luck!

I really like the comments in this paper -- it is validating to hear other people having the exact same symptoms and eerily similar way of describing the stiffness ( the guy in the coffin ??)

Agreed. These posts really helped ne.

I had an unusual case of PMR in that my arms and legs only hurt while I was in bed! As soon as I got up, I was fine! It took 4 months to diagnose because I also had no inflammatory markers in my blood. It all started soon after my second Pfyzer COVID vaccination. I was on a very low dose of prednisone for about a year. I was off of it for a few months and then I got COVID and it flared up again for a few more months. I've been off Prednisone for several months now--knock on wood!