night and morning headaches

[Ladnerhigh]

I’ve had pmr for 5 years now - and managed to taper slowly to 3.5mg - then got a flare and headaches at the back and neck pain - mainly in the night and morning . I went back up to 4mg but the headaches persist. Never really suffered from headaches in the past. My rheumatologist says maybe it is something musculoskeletal- not connected. Has anyone else experienced this?

[SnazzyD]

Hello, on what grounds does the Rheumy think it is something unrelated? How long has it been going on for?

When my GCA was brewing, I started getting pain in the back of my head and neck at night along with a global headache in the morning. By the time I got to work it was gone. However, I also get this type of pain of my pillow isn't the right height, eg. Being in a different bed or my pillow is dying and/or I have neck tension. Has anything changed for you?

[Ladnerhigh in reply to SnazzyD]

Thank you 😊 - the only thing that changes is getting older. I will see about a pillow change. The shooting pains seem to have abated - but often I have a headache at night and for a couple of hours after waking.

[SheffieldJane]

Yes I have experienced something like that. My Rheumatologist leaves no stone unturned and she arranged for a head and neck ultrasound scan. Non Cranial GCA ( Large Vessel Vasculitis) was diagnosed by a vascular technician. She spotted the abnormal halo cells in my left armpit. I was immediately put on 40 mgs of Pred having got down to 3.5 mgs with PMR. My symptoms were vague but did involve head pain and a viral feeling. I would want your Rheumatologist to discount this first as it is closely related to PMR and is not as clear as the Cranial GCA that we are more likely to recognise from a peculiar headache, jaw claudication and visual symptoms. Your instincts are telling you that something isn’t right, as did mine.

[Ladnerhigh in reply to SheffieldJane]

Thank you. Yes I will see if I can get the doctors to rule out GCA. It’s proving hard to get attention- I think they are overburdened.

[mad-country-lover]

Hi yes I am also having the same symptoms, I have had PMR for 5 years as well I am down to 5mg pred per day , all bloods are good and saying inflammation is O .. for 2 weeks I have had a headache face and neck pain which again is not me , I am waking and taking Lamaline as well as during the day , I also feel hot . I dont understand why , I am seeing my GP on Friday for his advise as my Rheumatologist is all about stopping Pred I will let you know how I get on xx

[Ladnerhigh]

Thank you. Yes - I often feel hot and out of sorts at the moment. Can be hard to distinguish pmr symptoms from others🤔 but I remember the shooting pains in my neck and head from before my pmr diagnosis.

[Maisiek]

Hi, , 3 1/2 years PMR , down to 2mg: I often wake with a headache in the morning : this goes after a while when I get up. An X ray found I have arthritis in my neck? I add an extra pillow during the night. Good luck!

[Ladnerhigh in reply to Maisiek]

Thank you - yes I got a similar answer from a very kind physiotherapist - she recommended yoga!

[Maisiek]

I do Pilates- it hurts 😢

[DorsetLady PMRGCAuk volunteer in reply to Maisiek]

If your neck hurts whilst doing Pilates - then your teacher needs to adjust the exercises for you.

[PMRpro Ambassador in reply to Maisiek]

It shouldn't - and there are ways of adapting movements so speak to the instructor.

[Maisiek in reply to PMRpro]

thank you- it’s my shoulders still hurt with the PMR so I avoid excess pressure on them.