Lightheaded, fatigue and headaches in year previous to diagnosis

[jennycat]

Hi, I'm newly diagnosed with pmr, normal bloods but fab response to pred. I was just trying to tie In symptoms prior to final diagnosis when my shoulders joined the party. I would have hours of light-headedness, brain fog, extreme fatigue and anxiety. Headaches would start during the night and usually resolve once I had got up and moved about. All of these things improved immensely the day after starting pred and only return when I tapered. Is there anyone else with a similar history?

[SnazzyD]

Sounds about right. Be careful with not reducing too fast as night headaches and head based symptoms could mean GCA is lurking. PMR can also cause these symptoms especially exhaustion and brain fog. I had night/morning headaches that resolved once I had got up and was ready for work for some months before my GCA diagnosis.

[jennycat in reply to SnazzyD]

thank you for this, I will be alert for GCA

[Missus835 in reply to SnazzyD]

Oh my, Snazzy this worries me as my GP has me reducing very quickly. I wake with aching occipitals out to ears and neck. Last week I upped my Pred to 11 mg for flare, from 6.5 and the headaches stopped. Dropped back to 7 after a week or so. Now the headaches have come back. She says I'm doing really well and I said oh no I'm not and she replied the "pains are just those now being unmasked after being on pred so long". Tried yesterday to explain about possible GCA and possible adrenal issues down the road, but oh no, she's not hearing it. Asked for basal cortisol bloods or synacthen test. To the cortisol she said we don't do that and she didn't even know what synacthen was. Cortisol is right on the blood requisition. Anyway, the top of my head around crown is very sore and tender to touch. Left top of head gets sharp pain and random pain in ear. After Im upright for a period of time, my ears fill up with pressure. I can alleviate it by cupping hands over my ears and pressing. I had a temporal biopsy Jan. 2023 which was negative for GCA. I'm due to drop to 5 mg this weekend. She allows me no more than 28 days worth of Pred so not much of a stash left for emergency. This will be my 3rd year for PMR. I guess my worry is I don't have a doc willing to listen, before there's a crisis. (like many of us.) She just fobs these pains off to the osteoporosis or fibromyalgia, but each condition has it's own set of pains. Tears of frustration after yesterday's phone consult. Sorry for long post. Thanks SnazzyD.

[PMRpro Ambassador]

Many people realise after starting pred that vague symptoms preceeded the thing that finally sent them to the GP. The literature insists it starts suddenly but my experience was of building stiffness and muscle soreness over about 6-8 months before a sudden "I can't get out of bed" moment. Most of my symptoms were loss of physical ability - couldn't sleep comfortably in my favourite position with my arms above my head, no bounce to do a step class so getting onto the step was harder and harder. Then excruciating pain in thigh muscles trying to use the crosstrainer at the gym. According to the GP that was something to expect "at your age" - 51!!! I can't remember the brain fog at that stage but it did develop later and before pred.

[Charlie1boy in reply to PMRpro]

Yes PMR wasn’t sudden for me either. Three or four months prior to diagnosis, I went through most of the pain symptoms you describe, and was seeing a physiotherapist, who ultimately advised going to my GP.

I realise your situation was over five years or so!

[PMRpro Ambassador in reply to Charlie1boy]

Started over 20 years ago ...

[jennycat in reply to PMRpro]

same here with the arms above my head to sleep. I would wake up after a few hours and it would be incredibly painful to lower my arms. I just put it down to getting old

[PMRpro Ambassador in reply to jennycat]

I wonder if the shoulder inflammation was what gave rise to the headaches? We do see that quite often though not so much at night.

[Polym]

Hi jenny cat I was similar my headaches were mainly during the nite at the top of my head like a fuzzy head I use to take a paracetamol before bed but stopped it now I have hearing loss and going to ent but since I put prenisalone back to 10mg my headaches eased think the tiredness just part of pmr but still get checked I went to doc as I was worried about gsa hope u get it solved

[Missus835]

I went from Summer 2021 to Jan 2022 in excruciating pain, without a diagnosis other than old age. Started with head and neck and carpal tunnel-like symptoms. I was going to chiropractor which wasn't helping. I'd never heard of PMR. Finally the then GP sent me for bloodwork, but for RA. Inflammation markers were very high. I brought them to his attention and he referred me to a Neurologist here in Halifax, who immediately put me on 20 mg of Prednisone, which first dose I took right at the pharmacy. Pain was gone within a couple of days. The saga continues. All the best to you in your journey. We're all different, but you are def not alone. Stick with our community. It's the only place I've learned anything about our condition.🫂

[mullochs in reply to Missus835]

You are so right !! 👍

[oaktree5]

stash what pred you can. In the US its very resisted by MDs to keep a patient on pred any longer than two years. If true pmr. In my experience you will have exhaustive fatigue and pain for much longer than two years, but just acetamenophen to treat it. Hope your gp is more enlightened as time goes by.

[PMRpro Ambassador in reply to oaktree5]

"stash what pred you can" - but keep an eye on the expiry dates!!!!