Pain in Neck

[Orangecakes]

I am 2 ½ years into PMR, diagnosed November 2020.

I have been suffering with serve neck pain since Saturday early morning, 2am making it nearly impossible to sleep. I have had to sleep on my back not being able to turn on my side without causing the serve pain.

Most of the pain is up the left side of my neck. I have woken up the past couple days in the early hours of the morning. This morning Sunday again waking at 2am in severe pain. It helps to get up and move.

I googled neck pain and per instructions on how to treat; I used an ice block wrapped in a towel, this has seemed to relieve the pain quite a bit, thankfully.

I am not sure if associated with my PMR as I am using a new to me tapering guide, DL Simple Taper, reduction over 5 weeks, juggling between 3 ½mg & 3mg. I am one day short of week 2.

I have experienced neck pain for a while now and have had confirmed osteoarthritis in my right shoulder. Most of the pain is along the left side of my neck and the centre below my neck.

I do have a slight background headache and slight pain on the sides of my head along my temples, not serious pain but slight discomfort, giving the feeling a 1 on a pain scale of 1-10. This hopefully is tension and not the beginning of GCA.

I am not sure if I am beginning a flare having recently tapered?

Your thoughts and comments would be most welcome, thank you.

[DorsetLady PMRGCAuk volunteer]

If you already have osteoarthritis in the other shoulder, it could be similar...have you tried painkillers or topical gel on left side?

Can you recall doing anything that might account for neck pain?... and headaches may be connected to that, and not a flare...

If you are concerned it might be your PMR, then initially return to 3.5mg until you get things sorted.

Addendum - further to PMRpro’s comments - although this isn’t link mentioned it might help -

physio-pedia.com/Sternoclei...

[Orangecakes in reply to DorsetLady]

Yes, this morning took Paracetamol, seems to have helped, also google shoulder exercises. Thank you so much.

[DorsetLady PMRGCAuk volunteer in reply to Orangecakes]

Good….

[PMRpro Ambassador]

Sternocleidomastoid problems! SnazzyD put up a brilliant video the other day.

It runs from behind the ear and attaches to the collarbone towards the middle and is the usual culprit in pain at the side of the neck.

[SnazzyD in reply to PMRpro]

I use one of two.

youtu.be/eD3Ds3GIt9M?featur...(Not working as expected?)

[PMRpro Ambassador in reply to SnazzyD]

Is this the other?

youtube.com/watch?v=ohAERdf...(Not working as expected?)

I never understand why doctors don't see its role in PMR and GCA symptoms that a LOT of patients complain about.

[Orangecakes in reply to PMRpro]

Thank you, very helpful and interesting.

[Orangecakes in reply to SnazzyD]

Thank you, very helpful and interesting.

[Twopies]

I have had godawful neck pain too, for decades. Long story. Diagnosed as myofascial migraines. After countless failed treatments, a doc finally suggested lidocaine pain patches which worked like a charm. Now I’m also having maybe arthritic pain in my neck, as well as a swelled trap—the lidocaine patches are still effective. Not a cure, but a treatment. They have been a godsend for me.

[Orangecakes in reply to Twopies]

Thank you, I will check out if lidocaine patches would be appropriate for me. Sorry that you experience serve neck pain as well, good that the lidocaine patches work well for you. Take care.

[Twopies in reply to Orangecakes]

Good luck! I buy them otc at the drugstore.

[Slowmo43]

Was having neck pain off and on for a year before PMR. Discovered a physical therapist who practices myofascialrelease. After going twice a week for 4 weeks my neck pain and headaches are gone. It’s been almost 3 months.

[Orangecakes in reply to Slowmo43]

Glad that the myofascialrelease helped you, I will keep it in mind. Thank you. Take care

[Slowmo43 in reply to Orangecakes]

Good luck to you! It's Myofacial release.

[PMRpro Ambassador in reply to Slowmo43]

MyofaScial

[Slowmo43 in reply to PMRpro]

yes, sorry for my double typos.

[Agavegirl]

I’m currently suffering neck pain. Rheumy and physio can’t get to the bottom of it despite MRI but I have high CRP and ESR readings. I have had hip bursitis twice in the past and wonder whether my neck pain is caused by bursitis in the neck. I found the attached paper. I hope the link works. The positive thing is that bursitis goes eventually and I am improving daily. ard.bmj.com/content/67/6/758

[PMRpro Ambassador in reply to Agavegirl]

If your markers are high that is a clue that there is unmanaged inflammtion - so why has the rheumy not reacted with a higher dose of pred?

[Agavegirl in reply to PMRpro]

Sorry not to give you the full story. The decision was to increase Methotrexate from 20mgs to 25 mgs. My markers are coming down but slowly.

[PMRpro Ambassador in reply to Agavegirl]

Slowly is the word - they should have used a bit of pred to get them down and THEN rely on the increased MTX to KEEP them down. You have a history of GCA - you don't mess with GCA inflammation getting out of control.

[HeronNS in reply to Agavegirl]

Your high inflammation markers are definitely a warning sign. In late 2020, early 2021 I had increasing neck pain. Thought at time it was osteoarthritis, but physio didn't help as it usually does. Then thought it was beginning to feel like the neck pain I had prior to PMR diagnosis, plus my CRP was higher than it had ever been before. So I took 10 mg pred (at time was struggling to stay around 3 which was higher than a longstanding dose around 2-2.5) and have to say the result was magical, just like first intro to pred back in 2015. It did take a long time, many months, to taper back down again, no question of a few days at a higher dose and back to close to usual dose, so I assume this was caused by a genuine flare of the disease, not just response to a slightly too low dose. Since then I've got to a stage where I'm attempting to reach zero, and am being slowed down not by PMR symptoms (none for months, touch wood) but by adrenal laziness. (I do have severe OA in my neck, and do exercises to keep supporting muscles strong.)