Hi, haven’t posted for a long time, but since I get no real answers from my Rheumatologist, thought I might get some guidance here. My problems started last August, 2016 - I had just gotten over a bad cold, when I woke up in middle of night with excruciating pain going down my left arm – thought I might be having a heart attack except that my pulse was regular and steady and no trouble breathing. Developed various symptoms after that, couldn’t turn over in bed without intense pain, morning stiffness fading during day, extreme fatigue, etc., etc.
I have 2 problems that delayed a diagnosis of PMR until October:
•No inflammatory markers - in September my CRP was .5 (Normal is 0 - 0.5mg). I finally had a moderate rise in my CRP to .9 in Oct. and my Rheumatologist felt it was enough to justify a trial on Pred. Never had an elevated ESR. He put me on 10 mg. Pred., Low dose – but it helped, especially with exhaustion. However, always had some remaining pain, although bearable.
•2nd problem – pain was always mostly in my hips (‘pelvic girdle’). Rheumatologist told me that most people with PMR have pain in their shoulders.
My Rheumatologist gradually decreased Pred. and last time I saw him in December I was on 7.5mg. But I was having increasing pain in my hips – again he reiterated that most people with PMR have pain in their shoulders and my hip pain could be just ‘old age’. I do have some osteoarthritis in my spine, but at 69y.o. – soon to be 70y.o. – I think many people have some osteoarthritis - however, I don’t think it causes this kind of pain. Maybe it does, please correct me if I’m wrong. At any rate, the Rheumatologist did order blood work and told me to call him the next day for the results.
When I called him for my results, my CRP was .3, so he decreased me to 5 mg. Pred./day. Since then, the pain in my hips has increased. At night, I again have pain turning over in bed, but the worst is getting up to go to the bathroom in the middle of the night – I can barely walk because of pain and stiffness, must hold on to furniture to support myself walking to B.R. (10 ft. away) and trying to sit down on toilet – YIKES! - also, can’t bend over or get dressed. This lasts until the morning, when after I get up the pain does begin to fade after about an hour. However, during the day, when I walk, the pain in my hips is exacerbated and is only relieved by sitting down. Aching and pain can also be bad in the evening (again not PMR-like). The hip pain is bilateral but worse in my Rt. hip – it starts in the center of my back (like a knot) and goes around the sides. Also, recently I’m getting a pain that extends from my Rt. Hip up my Rt. Back, almost to my shoulder.
I did go up to 7.5 mg Pred. on my own for about 1½ weeks without relief – went back down to 5mg. I am going to see the Rheumatologist again next week. My questions are:
•Is this PMR, Bursitis, old age or what? I think I was almost as old as I am now last August when this all started and yes, I had aches and pains, but nothing as constant or intense as this – I think I would remember.
•Did I ever have PMR? Do I have PMR now?
-Because I never had obvious inflammatory markers, I think my Rheumatologist is skeptical.
•I know if my Rheumatologist orders blood work on me, I won’t have any inflammatory markers, just because my body never reacted that way. He’ll think I’m doing fine and my hip pain is just ‘old age’. I sometimes think he doesn’t believe me and thinks I am a hypochondriac. What can I say to him to convince him that maybe something else is going on?
Sorry this is so long-winded, but I appreciate any help/advice anyone can give me.