Neck pain

[Pinkpepper]

Has anyone experienced rear neck pain and stiffness?

[parnelly1]

Yes. After nearly two years of mainly hips and shoulders I had a massive flair through December and was shocked at how painful my neck became for about a week then I had burning scalp at the back for a few days. Huge setback I had to increase steroids from 5mg to 20mg to control the flair. Am now on 14.5mg.

Hope it eases soon for you.

[Pinkpepper in reply to parnelly1]

Thank you.

[EdithWales]

Yes that’s how I started.

Could you tell us a bit more about the contex

[Pinkpepper in reply to EdithWales]

I’ve had PMR for about 15 months but this is the first time I’ve experienced pain at the back of my neck. Had it for three days and thought I’d slept awkwardly, think I need a good massage!

[DorsetLady PMRGCAuk volunteer in reply to Pinkpepper]

Maybe, but make sure masseur is aware you have PMR, an over enthusiastic one can do more harm.

Have your tried ordinary painkillers or heat/cold therapy.

Plus you might try increasing Pred for a few days to see if that helps.

Sometimes it’s difficult to know what causes what pain.

[Pinkpepper in reply to DorsetLady]

Taken paracetamol and that's eased it a bit. Also if I try massaging my own shoulders/neck it does relax it a bit. Will try some heat, thanks for taking the time to offer solutions.

[peace_lover in reply to Pinkpepper]

I use my microwaveable wheat bag frequently. I’m in love with it!

[Pinkpepper in reply to peace_lover]

Thanks will try heat

[YuliK]

Yes, my pmr started with rear neck pain, actually many months before pmr was diagnosed.

With treatment it gets better.

[Pinkpepper in reply to YuliK]

Thankyou for replying

[YuliK in reply to Pinkpepper]

Pmr can raise its head anywhere. Sometimes when we least expect it. 👍

[Pinkpepper in reply to YuliK]

☹️

[peace_lover]

My PMR started with back neck stiffness and pain and then progressed to shoulders and hips. It got much better with Pred, but I had a bad flare recently and had to up my Pred but have been left with back neck pain again. I don’t seem to able able to reduce any more at the moment, currently on 14mg and reducing to 13 mg is giving me problems.

Started in Sept 2017 on 30mg, down to 9mg in January, but now back to 14.

[Pinkpepper]

PMR SUCKS DOESNT IT!

[Linny3 in reply to Pinkpepper]

IT SURE DOES!

[PMRpro Ambassador]

Myofascial pain syndrome is often found alongside PMR - and it can lead to tight muscles in the upper back, shoulders and into the neck that may even go into spasm if you lift/turn/carry badly. It's a perennial problem for me, has been for years, but it is far worse since PMR. It sometimes improves at higher doses of pred but returns as you reduce. I get various treatments here - needling and manual mobilisation of the tight muscles mostly. In the UK my Bowen therapist was my saviour.

[Pinkpepper in reply to PMRpro]

Thankyou for your advice once again

[Patience47]

Pinkpepper - My PMR started with severe neck pain. ATB.

[Pinkpepper in reply to Patience47]

Thanks for your comments, I've had lots of helpful suggestions. ATB

[Nerak12]

Hi Pinkpepper. Yes, I developed back of neck pain & stiffness going up into back of my head a year after being diagnosed with PMR. Woke up with it every morning for days. It felt like I was wearing too tight a helmet. Not horrendous pain, just dull and my brain seemed like mush as well. When all my other symptoms got worse and a few others appeared ie pain in my sternum and ribs I realised, with advice from those who know on here, that I was experiencing a full blown flare. Upped my Pred by 1.5 mgs and hey presto it all settled down. I also split my Pred dose 8mgs in the morning and 2mgs at bedtime. This seems to work really well for me. I’m reducing very slowly again now 🤞🏻Hope this helps. Xx

[Pinkpepper in reply to Nerak12]

Thanks so much, that’s exactly what I’ve been experiencing after 16 months of PMR.

[Pinkpepper in reply to Nerak12]

How long did you up your dose for please, a few days?

[Nerak12 in reply to Pinkpepper]

Hi. I upped my dose for a few of weeks until I felt I’d got back to where I was before the flare, so pretty much pain free except a bit of stiffness in my thighs first thing in the morning which is normal for me and wears off a few hours after I’ve taken my Pred. I did get my ESR & CRP checked when I had the neck and head pain and they were both well raised from my new normal. I also happened to have an appointment with my rheumatologist and he told me to stay at 10mgs for another 2 weeks and then start reducing again. I think you have to do what your body is telling you and I’m afraid a lot of it is trial and error. Hope this helps, but I’m sure you’ll get lots of good advice from others on here. Good luck Xx

[Pinkpepper in reply to Nerak12]

Thankyou so much for taking the trouble to reply, helps to know you're not imagining things!

[Nerak12 in reply to Pinkpepper]

Oh, never think you’re imagining things. Pain is pain and there is always a reason for it. The important thing with us is that we work out whether it is PMR related or not. I think you get a feeling about that with experience and really listening to your body in the context of what you’ve been doing day to day. Don’t get disheartened if things don’t go smoothly. There’s usually a solution. We’re on a journey. Xxx

[Grants148]

Yes,Pinkpepper, l often feel stiffness up the back of my neck and head ,especially if l hold my neck back too much,or bend over for long.It is usually stiffness rather than pain,fortunately ,but holding my head back to paint a ceiling etc would cause a bad headache,so l avoid doing something like that!

[Pinkpepper]

Yes I find banding my neck back hurts, just bought myself a wheat wrap.

[Annie3737]

Yes I also have been experiencing neck pain and stiffness for over 2 weeks. Lying on my side at night is painful, and have to lift my head manually off the pillow some days. Paracetamol helps during the day as does a wheat bag. Diagnosed with GCA in 2015. Down to 5mg. pred. Doc not sure if PMR has now raised its ugly head, as I have developed other aches and stiffness over the last few months. Oh the joys !!!!

[Pinkpepper in reply to Annie3737]

Thanks for your reply, I upped my Prednisolene today by 2mg and bought a wheat bag, seems to be helping.