Severe neck pain - PMR/GCA?

[Mstiles]

I’m sitting here in pain whenever I turn my head from side to side or down or lie down. Lying on my back also causes pain in the upper back above my shoulder blades, (dowager hump region), and between the shoulder blades. I’ve e never had neck problems before

I’ve been on 9 mg of pred for 3 months now. This all started a month ago when I was just about to reduce to 8.5. It started with pain in the right shoulder, felt like the joint not the PMR muscle pain. Then I started having the back pain at night. Hard to get comfortable and sleep. Can’t lie on my back. Pain also at times involved the long muscles the go from shoulder to lower back on both sides. Right knee and left hip also acting up, (known osteoarthritis in those).

Tylenol does nothing. Ibuprofen helps a little. Ice seems to help the most but didn’t help today

My GP thinks the shoulder and hip are bursitis. She scheduled x-rays tomorrow for my back and to check mild scoliosis I’ve had since teen years. Right shoulder lower than left. I’ve also been prescribed physical therapy for unsteady gait but have been feeling too bad and overwhelmed to go Have been really flattened and not doing much but the necessities

Not helping - major family conflict and stress in my living situation really since the holidays.

I don’t have a good rheumatologist at present. My GP has been prescribing my pred without questioning me about reducing and I really don’t want to get into a discussion with her about increasing pred for the pain.

The pain is the worst I’ve had since the original PMR/GCA diagnosis. I’ve had a few head niggles, occipital area, but nothing too bad.

There are several other health issues that need attention but this pain is making it hard to figure things out and I just feel like my body is going to pot all at once!

[PMRpro Ambassador]

Myofascial pain syndrome and the scoliosis is upsetting the balance of your back muscles so they have all tightened, and some are spasming to protect themselves from further damage/pain. And the stress contributes.

Have been in a similar state for the last 3+ weeks. For those reasons.

Tylenol is next to useless for muscle spasm except to top up ibuprofen/Advil - you can take both together. I take 800mg ibuprofen - flooding dose, how it is meant to be used - and use heat over the back area. Some people find ice helps alternating with the heat, 20 mins each.

You could also try lignocaine/lidocaine patches, you can get them OTC in the USA. Good for spasmed muscles. Follow the directions carefully.

[Mstiles in reply to PMRpro]

Thank you pro, Sounds like what I’ve got.

Can it cause neck pain too?

After the 800 mg dose of ibuprofen do you take any more? I only took 200 mg as I’ve had a lot of GERD issues.

[PMRpro Ambassador in reply to Mstiles]

200mg isn't worth it - does nothing. I find taking 800mg ibuprofen at once often lasts me for a full 24 hours. My rheumy said 800mg before bed and then provided tramadol for when the 800mg ibuprofen wasn't enough and I have managed on a single dose of that for the last week, at first I took a dose in the morning and again mid-late afternoon. Once I was up and moving around the pain reduced - it was getting from sitting to standing that caused pain. The only thing he insists on is a dose of omeprazole or the like. I use famotidine.

It can cause neck pain - if the upper back and shoulder muscles are tight, that can affect the muscles in the neck, and that can be very painful. This seems to cover most things:

my.clevelandclinic.org/heal...

[Mstiles in reply to PMRpro]

Famotidine is Omeprazole ? An acid blocker?Taken with the dose of ibuprofen?@

[PMRpro Ambassador in reply to Mstiles]

No, famotidine is an H2 antagonist, one of the older anti-acid medications. Omeprazole is a PPI - a different sort of acid blocker. They have different side effects so decide which suits you better. Gaviscon is useful too. And try to take the ibuprofen with food if you can, that helps too. I take the acid-blocker in the morning and the ibuprofen in the evening, works for me.

[Mstiles in reply to PMRpro]

👍thank you

[HeronNS]

If you can get to a physiotherapist who provides these services, I've been treated both by low intensity laser therapy and dry needling. The dry needling was to "reset" the electrical impulses in my back as apparently my muscles were, as she put it, as hard as bricks. A more or less permanent back spasm. Unlike you I've had neck problems most of my life, starting in childhood, and have several arthritic joints in the cervical spine (and lumbar region also). Physiotherapy has really helped, along with me being quite diligent about doing the boring exercises prescribed. The laser therapy, which is available in the US although not yet as widely as in Canada, has been helpful. In fact this discussion reminds me I should post an update about my "alternative therapy".

bioflexlaser.com/

[Mstiles in reply to HeronNS]

Thank you Heron,Sounds like the laser and dry needling would help. I’m sure my GP will order physical therapy. She wanted X-rays to check the spine and see what the scoliosis is doing. I hope nothing is going on with the spine. I’ve never had a dexa scan, been afraid to see if I have osteoporosis. Had one at least 10 years ago and there was some osteopenia, did not need treatment.

[HeronNS in reply to Mstiles]

Physio would be good I think, considering your symptoms. I've been doing back and neck exercises for many years. I think I must have a collection of exercises for nearly every joint, although some of them were for an acute condition. If I do all my exercises it takes about half an hour twice a day.

[PMRpro Ambassador in reply to Mstiles]

One of the things I find very helpful is what my rheumy here calls neural therapy - also needling but usually wet needling, same thing but using lignocaine to introduce faster pain relief (I can feel the difference in a very short time) but the needling aspect then has a longer term effect on relaxing the muscles. Some doctors use saline and very occasionally steroids.

[Mstiles in reply to PMRpro]

Your rheumatologist treats this too ?I’m up at 1:00 a,m, here in California

With terrible pain after lying down an sleeppmg for 3 hours. I can’t lie down. It even hurts sitting up but not as bad. I’ve got ice on it. Maybe I’ll eat something and try the 800mg ibuprofen. Wondering if this whole thing is PMR after all and I need more pred. I sled my GP to test CPR and sed rate but haven’t heard back yet. They were OK a month ago before all this started.

[PMRpro Ambassador in reply to Mstiles]

I do have a pretty special rheumy!

Does anything improve it? Moving around for example - though I know how difficult it is to move!

[Mstiles in reply to PMRpro]

You sure do have a special rheumy! It’s better when standing and moving around. Cannot lie down!

Tried a smaller, less firm pillow when I went to bed and thought I’d figured it out. Could get comfortable enough to go to sleep. 3 hours later woke up in horrible pain. Coul hardly manage to sit up.

[PMRpro Ambassador in reply to Mstiles]

Do you have a rheumy? Back pain that is worst at night and improves with movement is typical of a form of inflammatory arthritis - and it does start in older patients looking very like PMR. You need some imaging to rule something like that out.

[Mstiles in reply to PMRpro]

Does inflammatory arthritis show up on an x-ray? Or do you need another type of scan to show it. had a great rheumy, my third one, but she left. I saw her replacement once but she was not experienced and pretty much followed the script of reading me all the side effects of pred and telling me I needed to get off as soon as possible. My GP has been prescribing my pred.

Thanks for all your replies PMRpro.

[PMRpro Ambassador in reply to Mstiles]

In later stages maybe but sometimes it needs CT or preferably MRI to catch the nuances. I really do NOT need a doctor to churn out the downsides of pred at her first meeting with me. I can read those if I don't already know. That belongs at the start of treatment. Her job is to make the management of my medical problem as good as it can be.

Might be worth discussing what to do with your GP? No way of following that good rheumy?

[Mstiles in reply to PMRpro]

So tired of the pred rheumy wars! Can’t follow the good rheumy because of the messed up US instance system. She joined a whole different insurance system that doesn’t take my insurance. Will have to figure out what to do. Maybe the x-rays on Wednesday will tell me something. Spondylitis might be another possibility.

[PMRpro Ambassador in reply to Mstiles]

That is exactly what I was thinking of. Has it been mentioned already then?

[Mstiles in reply to PMRpro]

No one has mentioned it to me but I think on an earlier X-ray there was some in the sacral joints and lower back. I have t had the cervical spine done though.

[PMRpro Ambassador in reply to Mstiles]

Spondylitis or spondylosis? Spondylitis is a specific inflammatory arthritis and can be treated though not cured using biologic drugs. Spondylosis just means general wear and tear and degeneration.

[Mstiles in reply to PMRpro]

It sure which one. I’ll have to look back at my X-rays.

[SheffieldJane]

I have been getting a lot of occipital head pain and a crackling stiff neck lately. My husband is a pretty good instinctive masseuse and can actually move the pain by firm but gentle massage to the top of my head then forehead and by this time the neck muscles and the bad pain at the bulge at the back of my head releases. My diagnosis is Cervical Spondylosis and the triggers are too much screen use or sleeping with my head to high. Or simply the tensions of life these days.His welcome massage offers temporary but very welcome pain relief. I possibly need someone trained in therapeutic massage who can offer a longer lasting solution.

[Mstiles in reply to SheffieldJane]

Thanks Jane. Yes I wondered about cervical spondylosis too as I had some slight spondylosis in an earlier sacral/ lower back X-ray. How was your’s diagnosed ? x-ray?

[SheffieldJane]

Yes. More. Than one X Ray over the years that shows specific damage to several of the upper vertebrae. It is described as “ moderate” which I believe is significant and could be operated on but it was a dangerous procedure, that didn’t work sometimes, leaving you in a worse state. I now get low back pain when standing and am back to walking badly, very unsure of my balance. It was embarrassing crossing the road at the hospital today. It was like I was navigating a rocky road. So I bought a rocky road cake that was completely delicious s§d high blood sugar.

[Mstiles in reply to SheffieldJane]

Ha! Sounds delicious. Yes sometimes you just have to sod it all, as you Brits say 😁

[Mstiles]

Thanks for the very useful explanatory link Dad2Cue

[Purplelamp]

Your condition sounds similar to mine. I went with horrendous pain in base of skull one side, also neck, shoulder, arm. Couldnt sleep with it & too painful to stand with it. He put me on 20mg Prednisone then told me to reduce to 10. Felt awful on 10 so on 12.5. Today doctor says I havent got PMR because my neck is still uncomfortable (but nowhere near as bad) I have scoliosis as well. Be interested in what your outcome is x

[PMRpro Ambassador in reply to Purplelamp]

Your doctor could do with some research on PMR and GCA! 20mg was a reasonable starting dose - but then then drop you to 10mg in one go was crackers.

However, I must say that it is quite an unusal clinical presentation for PMR and sounds more like a muscle spasm problem, possibly of the sternocleidomastoid muscle which is then causing trouble in the shoulder and arm muscles. The fact you have a scoliosis is also relevant as that puts a lot of strain on back muscles which would contribute. It doesn't mean you haven't also got PMR but it may not be the primary problem.

Have you any way of getting to see a physiotherapist?