Newly diagnosed, in honeymoon pred stage and a few musings

[Daisyfield]

Hi I'm recently PMR diagnosed. Previously fit, healthy, developed bilateral stiffness and pain esp shoulders. Bloods all normal. Despite worrying re taking preds I have been on them 4 days at 15mg/ day and have the dramatic improvement. Only a slight tinge in R shoulder. mainly pain free, but a bit fatigued, and a bit achy in the morning.

Have read Kate Gilbert's v useful book and surprised to see how little has been researched into this disease...and if it is a type of vasculitis? but yet it seems even that isn't fully confirmed or understood? I'm wondering if it is known where the pain originates? from inflamed blood vessels? or the tissues that are not receiving sufficient oxygen? Or both?

I was thinking about my shoulder. V painful before preds. So much that I woke at night with the pain.It's almost pain free now. I'm going to see physio to look at impingement/ rotator cuff...and from what I glean...usually rotator cuff (not PMR initiated) results from damage, over zealous use, that causes the bursa to swell that then restricts blood flow to the tendons etc and cause fraying of tendons due to lack of oxygenation.

So...is PMR shoulder bursitis due to restricted blood supply, by vasculitis to the bursa, then the bursa reacts and swells, and has less blood flow and then causes fraying of the tendons?...so does early intervention with steroids actively prevent rotator cuff, by allowing adequate blood flow to the area. My shoulder pain is almost gone..and i don't know if it's just the steroids reducing the inflammation, but is it also preventing degeneration of the tendons..and therefore preventing possible permanent damage to the shoulder?

And if so...how many shoulder problems are low grade inflammation of blood vessels initially and not primarily joint problems?

Kate Gilbert's book is great and I'm now thinking of how to manage diet and lifestyle. And stay positive!

[DorsetLady PMRGCAuk volunteer]

This may give a few answers or raise more questions -

healthunlocked.com/pmrgcauk...

Also have a read though this post -

healthunlocked.com/pmrgcauk...

[Daisyfield in reply to DorsetLady]

Thank you for your reply...yes you're right...it has answered and raised more questions!

[DorsetLady PMRGCAuk volunteer in reply to Daisyfield]

Ah good.... that’s means you’re getting the hang of our illnesses!

One answer usually raises another question. ....... but that’s what we’re here for.

Keeps us out of mischief. 🤦🏻‍♀️

[PMRCanada]

I’m dealing with both PMR and organic shoulder issues, just waiting for GP appointment to request an MRI of both shoulders so we know what we are dealing with. It is difficult (for me) to determine if the PMR has made my shoulder issues worse (which is what I suspect with my knees)due to month of unchecked inflammation when I was not diagnosed and not on pred to keep it in check? Although pred helps control inflammation, PMR chugs Away in the background attacking our major joints. To add to my confusion sometimes my shoulders respond to Tylenol, and sometimes not, leaving me wondering about what is the cause of the shoulder pain, and how do I best treat it??

Physicians seem to have their own opinions. Hard to figure it all out!

[Daisyfield in reply to PMRCanada]

Thanks...yes...it does seem that because pred reduces inflammation it helps, but also has the negative side effects that also can cause ligament/ tendon weaknesses. I'm hoping my shoulders have no permanent damage and if I'm careful with exercise and stretches that they'll come through this ok if I can keep inflammation down. Googling the shoulder anatomy...shows it to be a v intricate area. Hope your shoulders are ok. I'm new to this PMR but fatigue has knocked me sideways today.