Been holding off writing because I feel pretty good except for lingering stiffness in shoulders and hands. Got right into the outdoor chores in March 2020 when lockdown hit Ontario, Canada. In June, I guess I overexerted myself with yards of peastone, mulch, sod, rocks, etc. By June, I got the really stiff shoulders, arms, hands, pelvis, and legs. Left shoulder felt like a rotator cuff injury. Had a frozen right shoulder 8 years ago probably from digging rocks in the yard.
Doc’ diagnosed PMR over the phone. Blood tests revealed normal inflammation markers. (Have to check lab report as I think creatinine kinase? was high or low.) Only took Naproxen and Tylenol a few times when really bad. Kept doing light chores, exercises and riding the bike. Kayak was too heavy to lift into the water and cutting the lawn was a challenge. (“I fought the lawn and the lawn won.”) Well, almost!
So now, it’s February 2021 and I’m still good except some stiffness in shoulders and hands. Afternoons after my winter bike ride I have been getting teeth/jaw/ temple pain so keeping an EYE on that. Thanks everyone. Great informative site. Have a great day(s). 😎🚴♂️
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“Afternoons after my winter bike ride I have been getting teeth/jaw/ temple pain so keeping an EYE on that”
Please do, it COULD be symptoms of GCA!
You only mention painkillers so does that mean that despite a diagnosis of PMR you are not taking steroids? Just because your inflammation markers were normal, doesn’t mean you don’t have PMR or GCA, up to 20% of patients are in similar situation.
You definitely need to follow up teeth/ jaw/temple pains - even if not GCA, it needs sorting.
Welcome from a neighbour here in Ontario. Canada! I too tried Naproxen and Tylenol for the first 5 months I had symptoms, but have to admit once I was formally diagnosed with PMR, despite being fearful of pred, I surely welcomed the pain relief it provided.
In the process of my GP trying to land on a diagnosis, I had 2 CK tests done over 3 months which came back normal. My ESR was also elevated and CRP was high, so that help narrow things down.
You sound like you have a very active lifestyle, so if you do indeed have PMR, be mindful of your physical activity. Seems that men sometimes report a different level of “severity” of this condition compared to women. Please do follow up with your doctor about the jaw and temple pain (as other forum members have suggested).
I’d be a little wary of continuing inflammation that isn’t really being treated by your pain killers, even if one of them is an anti-inflammatory (it’s the wrong sort). One word of caution, GCA can be rather impolite when calling as it can give you very little warning. Mine went from odd niggles to suddenly persistent temple pain, jaw claudication and eyesight shutting down in 48 hours. Some go straight to blindness and some warning signs would have been gratefully received. Also, be aware that stroke is also a risk with GCA. I would have rathered a starting dose of 15mg for PMR than 60mg for GCA.
It depends, of course it wouldn’t be that simple. There are different eyesight problems that go with all this. The first is the initial worrying one where the optic nerve is damaged by lack of blood supply from the effect of the inflammation on the blood vessels to it. The earlier you treat it the more likely sight will be restored. If the eyesight or parts of it have gone before treatment, it’s is less likely, but IV steroids are given to blast the inflammation to increase the chances. I had early signs of black spots when exercising hard and in the night my right eye sometimes saw only grey when I got up for a wee, but was better by the time I got to bed. The last bit when my peripheral vision was closing down like looking down tubes, came on over 2 hours. Once I had 60mg Pred orally my eyes were back to normal within two hours; I was very lucky. I remember excitedly asking the doctor if it was really possible that my eyes were ok so soon. My husband tells me I was shouting and wouldn’t shut up talking; I guess that was the Pred. Some people get no warnings. Dorset Lady has a story to tell on that one as have others here. I gather the first 48 hours are critical and then the following week gives a guide to whether it is going to be permanent.
The other eyesight problems come from steroid treatment and those are blurry eyesight and difficulty with focussing quickly, increase in eye pressure and cataracts. The first two will reduce with dose, the second is unpredictable and can advance over a few months or take years.
Just as an aside, one forgotten area of damage is hearing from damage to the eighth cranial nerve. I have permanent hearing impairment on my worst GCA side.
Indeed! It’s a lottery is t it? I cringe when I think how close to the edge I was walking. I may have already said, I do remember a dream the night before A&E, in which someone said to me that I should go downstairs and look at my flowers right now because I won’t see them again. That was what shook me out of denial that GCA was likely. However, I cringe even more that I still insisted I went with my daughter back to Uni at the crack of dawn before calling 111 at lunchtime 😖. I had a strong feeling my life was going to change and I needed to sit in a car to ready myself. I wasn’t thinking straight by morning is only defence.
No don’t think I’ve read that before....it’s a bit spooky isn’t it?
Totally agree life’s a lottery...being in the right place at the right time, or the wrong place at the wrong time.
Can recall a couple of times either driving to or from work and being five minutes later than usual and coming across an accident....thinking if I’d been my normal time.....
My late hubby always used to say - “if the bullet’s got your name on it, it’s got your name on it!” He was right, he dodged a few professionally and personally, until his eventually came along.
It depends....how quickly you get the Pred and how severely the arteries feeding the eye are damaged.
In my case, no...the ophthalmic artery - the one feeding the optic nerve was affected and therefore starved the optic nerve of blood - it does not repair itself.
My temporal arteries were not affected, so no visible warning signs of GCA - which is what the textbooks say. The affected cells which cause the vessels to become narrowed are scattered randomly - and sometimes very difficult to trace, and of course the smaller the blood vessel the quicker that vessel becomes blocked.
The ophthalmic artery is deep within the head , so no chance of doctor being aware...although I did have other classic signs - but that’s another long story.
In my case I was carefully monitored for another 14 days (on 80mg) until specialist certain the other eye okay....no one was for sure initially whether second eye was going to be okay. The scariest 2 weeks of my life!
Very little to add to Snazzy and DL's stories except to say that it is generally felt there may be up to a week after the first sign of visual symptoms before damage becomes irreversible but there is a tipping point where too much of the optic nerve has been damaged that it can't be saved, it will just progress. It is like any stroke - it must be treated immediately for the best hope of success.
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