Hi @stevieb, I had symptoms of PMR and GCA about a year and a half before diagnosis. The PMR was unrelenting pain and stiffness from the neck down that no amount of exercising or physical therapy ever helped. Then I got a host of other symptoms. A temporal artery biopsy was positive for GCA, I started with 40 mg prednisone and tapered off it after a year and a half.
I was good for a year, then about 6 months ago, my neck got stiff again. I did lots of exercises, range of motion was okay, but it hurt to turn my head. Pain went up my head. At this time I learned I need a shoulder replacement. I figured my bad shoulder was causing imbalances throughout the rest of my body. I also thought the head pains were from my neck so kept doing targeted exercises, without any significant relief. Then I got other symptoms: itchiness, no rash, faintness in the morning, anorexia, tender scalp, loss of weight, dry cough and malaise. The last head pains were really bad, compression-like, the feeling my scalp was pulled so tight.
I suspected my old friend returned, requested a CRP test, and it was elevated. Now I'm back on 40 mg prednisone. My reaction to it is different this time. No euphoria, pain is gradually easing up, but malaise is gone.
I wonder how I could go six months minimizing the neck and head pain and not suspecting the return of GCA. One clue from the past should have been that the pain of PMR and GCA does not respond to exercise or physical therapy, because the vessels, arteries, etc. that carry blood are compromised by the immune system attacking them and blood just doesn't flow to the afflicted area (in crude lay terms).
So, I just learned another lesson about this disorder, which hopefully, will help me and others to recognize symptoms of a relapse in the future.
Wow. So many aspects of this that are totally new to me (GCA especially).
I agree, traditional exercise when a flare kicks in doesn't provide overt results for me.
But certain stretching, and soft yoga positions does relieve the aches to some extent. I also use a specific strain of kratom (super green Malay from Mitragaia). I try my best to be active to maintain my body in as efficient condition as possible, more as a preemptive deterrent rather than a post flare fix.
My main distress is the weakness, fatigur, and depression than in an outright pain. (after joining this forum I understand how fortunate I am). It could be my practice I've chosen or could be just that's the way it is.
I do know when I am in that weakened, depressed flare state, the "PMR tells me to curl up in a ball on the floor and don't move", but if I ignore that, go outside in the sun, and move around minimally, .... I feel better.
I do see that many of us absolutely require overt medical treatment and
medicines to maintain some semblance of functionality.
As my wife the Acupuncturist says "if I'm in a carwreck, don't call an Acupuncturist, call an ambulance! ".
I'm constantly having my perspective widened by folks in this forum, who have taken on so much more than myself for so much longer.
When I am suffering just even a little bit of improvement in quality of life is significant.
Apologies! I kind of slipped off-topic! But thank you! That's valuable for me to hear, as I am definitely not "out of the woods" yet!