The pre-diagnosis seems to fit, but who knows. So often these types of conditions mimic each other. It would sure be nice to get an answer. I have been tested for lupus, MS, and rheumatoid arthritis, both of which are negative. I have days of being so fatigued it is all I can do to get through the day to bedtime. I have days of feeling like I'm getting something (flu-ish or a cold, headache, sore eyes, feeling mildly ill, but it doesn't amount to anything). All of my first-degree family members had autoimmune diseases, and my naturopath has said that my body behaves as though I have an autoimmune disease, but it's just not been named yet. This most recent episode came on strongly in about October and I've been like a 900 year old person since. As mentioned in my original post, I am only 53 and typically very active and lithe, but lately I need help getting off the toilet. I don't want to have a disease or syndrome, but I sure would like an answer so that I can just deal with it already!

Hello @laurafin sorry to hear you are joining us (in a nice way 😉) and you are in the right place to get information. Sometimes the bloodwork may not really indicate PMR, as in my case and when it did the counts were only slightly elevated. Like you, I went from fully active to struggling to take toddler steps with virtually no indication in bloods that were barely elevated. As I have posted previously within 5 hours of going onto Prednisone I was back to walking and almost pain free. Good luck with your treatment and while prednisone has its side effects I believe the end result will be worth it. I am back to doing pretty much everything I was doing pre diagnosis.

Your description of physical distress sounds a lot like mine. I was diagnosed with PMR after 4 months of pain, stiffness and fatigue (PMR can give you anemia). I too was an active person and initially thought my pain was due to strenuous exercise, but not the case. It got worse and finally moved to my shoulders and upper arms; then I got a diagnosis.
I too felt worse after resting, couldn't get comfortable no matter what I did and went up and down stairs with great difficulty, one step at a time. Odd bodily things came with it: for a while I had to pee every hour on the hour at night, struggling to get out of bed and use a female urinal because I couldn't make it to the bathroom. The fatigue was extreme. Bowels were loose and barely made it. It was all from PMR and I doubt if the docs could even say why.
I am on 10 mg of prednisone now and feel 95% like my old self. It keeps improving and I am hopeful of getting over this thing!
If you do go on prednisone keep an eye on your bones. If you are anywhere near osteoporosis talk to your doc about bone drugs. Best of luck and good health wishes to you.