Neck headache spine/pelvis/hip pain

[Annemarie24]

Iv come of steroids 4 days ago since then pain and swelling is worse , my bottom of my spine and top of spine has been killing me woke up this morning with a shocking head ach, starts at my neck shooting pains goin up and behide my ears , has any one had this any advice pains awfull?

[springcross]

What dose were you on Annemarie and for how long?

[Annemarie24 in reply to springcross]

I had a steroid injection middle of feb then i started on 10 mg a day on the 13th march so was on them for 2 weeks then completly stoped

[springcross]

Oh and by the way, how long did you taper them down for.

[springcross in reply to springcross]

It could be a flare. What medication are you on now?

[Annemarie24 in reply to springcross]

I only got diagnoised in Feb trying me on hydroxychloroquine 400mg day diclofenac but not been working had loads of flats in the middle if one now i have rheumo on Wednesday to discuse meds i just don't think I can hold out my heads killing

[KittyJ]

I have these type of pains in my head but they’re not from RA but degeneration of the discs in my neck. I’d see your GP (when you can) to get checked out if it persists.

[Esmereld]

Your headache sounds like it’s coming from your occipital nerve.

[Brychni]

Yes, just firing up laptop so I can type properly!

[Brychni]

Hi Annemarie

Your pains sound exactly the same as mine at the moment. I was diagnosed with Undifferentiated Inflammatory Arthritis a few weeks ago and have been taking 200 hydroxy for nearly 3 weeks. I too have pain in my sacroliliac and coccyx and right at the top of back and neck, also wrists, feet, ribcage etc etc...

'Undifferentiated', it was explained to me means one of 3 types of autoimmune, PsA, RA or spondylosis although I have Raynauds too and tested positive for anitphospholipid syndrome.

For a long time I have thought that what is going on in my other joints is also going on in my jaw but it seems to be connected to a point in my back about quarter of the way down which occasionally feels like burning truly horrible) , it radiates all around my ribcage under my arm up the back of my neck, into my scalp and into my ear, inside and out, it also radiates to the front and makes me feel like my oesophagus and stomach are burning. If I don't nip that pain in the bud, my ear starts to go red and I wake up with a cluster headache - but I have learned to manage this early on and have been able to stop it in its tracks with normal painkillers.

I go running a lot and since I've been isolating I have been in joggers with my hair up in a top knot and that has not helped. When I finally let it down for a shower the other day, my scalp felt bruised where the hair was being held up against the grain - as it were. Of course, I looked it up and it's a thing! It really contributed to the pain in the side of my face and ear. Also, I think that the Raynauds is in my ears too because if I don't where a hat when I'm out running I get the pain/hot ear thing too and it is excruciating. I feel like a bear with a sore head and it makes me cry.

I would love to know what this is - is it the arthritis? What were you diagnosed with?

Honestly, if the pain is coming in waves, try to take a pain killer right at the start. It has been drummed into me by headache specialists that it's vital to take your medication right at the first whiff of pain. It's hard to get into the habit as my medication is sumatriptan injections which always feel like overkill when all I have is a sore ear or painful eye, but it has worked and I've been able to take gentler options like cocodamol and even a parecetomol.

Hope you feel better soon.

[Annemarie24 in reply to Brychni]

I was diagnoise with inflammatory arthritus most properly r a , I'm on tramodole and that didn't take the pain away , i ended up goin a n e last nite thought i was dieing lol the pain in my head was horibel they gave me morphine done a ct of my head what was clear looked at my back / spine signs of swelogn so she put it down to being taking of steriods and having a flare , thank you

[Hidden]

Should you have stopped the steroids as you did? It’s pretty awful for you if you stop suddenly instead of tapering them off. Hope you find some relief soon.x

[Annemarie24 in reply to Hidden]

My rheumotoligist told me to stop i had only been on them for 2 weeks and was a small does so may be thats why she didn't tamper them down x

[Pasjc]

I'm so sorry for you I've just dropped my steriods by one and the difference is dramatic. My spine hips pelvis ankles wrists and neck I'm hoping my body will adjust and level off. I'm also on a biologic injection for RA I wont ring anyone because of what's going on I hope we both improve soon xxx

[Annemarie24 in reply to Pasjc]

Thank you , just awfull i have another phone appoinment tomoz so hopfully will start new meds x