Polymyalgia since August.2021
Thank you so much for mentioning Kate Gilbert’s book—Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition.
I wish I had it at the beginning!
I urge everyone to buy it and suggest it should be available to rheumatologists and in clinics for patients to buy at under £10..
Any new sort of headache should be reported - frontal and top of the head are common sites for headache in GCA. You do sound as if you may have overshot the pred dose you need at present if you have shoulder pain. I think DorsetLady had shoulder pain with her GCA.
As PMRpro says any new headache should be followed up - and most definitely to shoulder pain - in fact that was my starting issue and threw GP off piste - diagnosed frozen shoulder. No particular temple pain either - at worst up and over head and down through eyes vertically like 2 bands…
Not saying you have GCA, but please get it checked.
Thank you.
well I have had shoulder pain on and off thru last over 5 yrs, and having a few ultrasounds, exrays done, dr told me, calcification, and osteoarthritis, having now last few days more noticeable, and left upper jaw under ear, feels a little strange, putting little pressure on that area feels tender, hurts a little, other side is fine, any significance with this new sympton? everyday, something else hurts, now being referred to endocrinologist, after catscan resultsshowing nodule on top of adrenal gland, so rheumy has passed off advice re tapering to my GP, and he is not advising until after seeing endo,
As additional pain is one side, and if it’s same side as shoulder would say it’s probably from that rather than PMR/GCA per se.
It very difficult to know what pain is what disease at times ….
Do you have painkillers for OA? Or if you don’t take them regularly, maybe a day it two’s trial to see if they help.,
Thanks Dorsetlady, but I do take tylenol once in while, but have to say, does very little to relieve pain, I take 2 extra strength, from time to time, hoping they will help, but very little relief, and mornings are the worst, so have started to take my pred, wee hrs of morning as suggested that may help, again, have not noticed any improvement, on getting out of bed in am,s , everything hurts, have trouble moving period, am being told arthritis, but still on pred, 4 mgs, 4 days, and 5 mgs for 3 days, and that is where my rheumy has told me to stop few mos ago, because issues with bowels, divericulosis, etc, and of course at that time put on antibiotics, anyway, I am diverting all over the place, sorry, just so depressed and fed up with all these symptons, and not getting much if any help from GP or rheumy at this point,
When you use painkillers for chronic pain they work best taken regularly so the pain is combatted and not allowed to restart. The odd dose now and again won't usually achieve anything - works for an ordinary headache maybe, but otherwise, use them properly to give them a fightlng chance.
Do appreciate how you feel, it does get very weary at times, when nobody seems to have the answer….Under 4/5mg Pred won’t mask OA pains…for sure, been there.
Hope you soon get some resolution and relief from pain.
I hope you haven't got GCA🙂 but headache across the top of the eyes was one of my main symptoms (along with very stiff neck). It didn't respond to any painkillers, started mild and got gradually worse over several days before stampeding. Good luck!
Thank you so much Sharitone, the rheumatologist checked for that 10days ago, she felt my temple area which still doesn’t hurt.I send good wishes to you as I’ve read up on GCA.
There’s a lot of stress in my life and I am thinking it’s also related to less predisolone so will contact a g.p. next week by phone and it does lessen with paracetamol or Naproxen if I need it for my back.
I’m new to this site but how reassuring and to know how it is for others and sadly how long it can last.
Stress is a major factor in increasing the problems with your illness, and not always easy to manage….as well as creating headaches even without PMR.
The fact that you say it does lessen with paracetamol or naproxen may will indicate it is not GCA…
just as a matter of interest, do the painkillers help shoulder pain as well.
If not, then you may well have two different things going on…stress headaches on one hand, and too low a dose of Pred (shoulders) on the other.
Sometimes not easy to know what pain is what!
As for time, it is what it is, but once you have symptoms under control, you can still have a reasonable quality of life.
Make sure an ophthalmologist is measuring your eye pressure. Prednisolone may induce or enhance glaucoma. A glaucoma patient myself, in my case pressure did increase under prednisolone and I got additional drops to reduce pressure. Headache above the eyes may point to glaucoma/overpressure. And untreated glaucoma is causing blindness. So take care.
Thank you for that advice.Will book appt. next week when hopefully I’ll have less stress.
I’m Jazz77 and fortunately a friend suggested it could be congestion and I think she’s right.Inhaling steam with minute menthol crystals and paracetamol.
I tended to link it to PMR
Thank you all I find the posts very helpful.
Low back pain
Update 
TV portrayal of Polymyalgia in Waiting for God sitcom
get quite painful pressure headaches at front/side of head a lot am told not related to illness but preds and to ignore them what do U think
