Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Severe Neck Pain

Hi Everyone,

I'm hoping someone has some insight into neck pain and AS.

I was diagnosed with AS in June 2016, I am not on any medications currently, but I am doing a low starch diet, no refined sugar and gluten free. I take ACV every day.

For close to 3 months now I have had neck pain, its really intense in the mornings, I feel like I can't lift my head from the bed. I have been using a very small pillow and trying to sleep on my back through the night. It was originally the right side of my neck that was sore, now its the left side. It seems to be stemming from the base of my skull. It hurts to touch my skull where the muscles attach. It could be ligaments and muscles protecting the joints.

However, my doctor doesn't seem to think its joint related, but it feels like the last AS flare-up I had in my chest.

I'm wondering if anyone else has experienced this type of neck pain, and if so any ideas on medications to try or other solutions? I walk and stretch every day. I feel that I am doing everything to prevent this from taking over, but its been relentless as of late.

I appreciate your help.

Cheers,
Bailey

You neck pain is typical A.S. it may be joint or ligament but is still A.S. and should be treated as A.S. The first line medication for A.S. is what are known as NSAIDs. check it out on Google.

The chances are that with the right meds. it will settle down. As you probably already know A.S. can change from good to bad and back again for no apparent reason. So hopefully this neck business will get better of it's own accord eventually. You may only need the neds. short term, hopefully.

Hi Frederick,

Thanks for your response, I was on sulfasalazine, but failed that medication due to 48 hour migraines. I wonder if there are any temporary meds that rheumatologists suggest for this type of pain?

Bailey

Yes probably but don't know which. Ask next time you see a rheumy.

Yes. neck pain is absolute murder. Have had two vicious bouts of it. Took NSAIDs - which ended up rotting my gut out. Then was put on Celebrex - ahhhhh. Did the trick. Plus, when in agony I had a soft'ish neck brace to wear : not constant, but to help support. For night time, I found my comfort by several support pillows, keeping back, shoulders and head well supported; plus a thin'ish pure down neck pillow. Then later I got a 'dog bone' curved neck support pillow - ahhhh.

In addition, physio to ease the neck by 'manual' stretching. The physio doing this *must be AS knowledgeable, as otherwise could cause damage to the neck. IF worth their salt will not touch unless and until has seen an MRI. The MRI will show what is going on in the neck. I will be having my neck MRI redone soon.

Right now, my neck has started playing up again. Know I have a retrolisthesis at C2/C3 plus osteophytes pretty much throughout and fusing C4/5, C5/6. Plus nerve damage. Paresthesis has set in. Murder. I now have to wear a neck brace almost all the time. The constant pain from the nerve damage is...Ho-Hum !

Can no longer take Celebrex as caused multi problems with GERD / Reflux. NO, I do not take PPIs...PPIs are anticholenergic = danger of / can lead to dementia. No thanks. Pain killers ? Paracetomol / Codeine. ONLY when needed.

Hope this has helped - Take care -

Molly C - Keeping on - Keeping on (as we all do innit )

Hi Molly,

Thank you so much for sharing your story and giving me so much insight.

I will request another MRI from my Doc and see whats happening in the neck. Also, Celebrex sounds like a solution in the mean time to limit the pain.

All the best to you.

Hugs,
Bailey

Like others, lots of "experience" with cervical / neck inflammation / pain.

My neck is a lot better now that I'm on Humira, but 6 weeks ago, it went into a flare,

so I did Aleve --> Humira --> Aleve --> Methylprednisone (1 week only taper) --> Aleve --> Humira --> Aleve --> Humira (and now am cycling between Humira (I have to wait at least a week in between injections) and Aleve (can only take every 12-24 hours for a few days at a time to prevent gastritis and edema, but its the one NSAID or Cox2 inhibitor that works without too severe of side effects). Also been using my KIP gel.

I've also been seeing my chiro increasing from 1x to 2x per week. Others will caution against chiro and rightfully so, but my chiro is very careful and works in the same ways as my excellent manual PTs in the past. For me manual traction can help and other gentle soft tissue work to get it moving again....its like my head gets stuck where you describe.

I also saw my interventionalist on Friday and he agreed with me that we'd hold off on injections as it seems to be slowly settling down on its own. In the past he gave me facet joint cortisone injections in my C2-C3 and C3-C4 facet joints when nothing else would help...that was before humira...he also does nerve ablation if the cortisone doesn't help...I've only had the cortisone injections at this point.

The other things I do when it flares: ice and a lot of it, neck pillow, ultrasound (I have a home unit), topical KIP gel (ketoprofen, ibuprofen, piroxicam) compounded by my compounding pharmacy (I'm still using that..its really helpful), zanaflex muscle relaxant for bedtime, limited sitting (I do better sitting in a kneeling position at the coffee table to work or standing).

In the past, I got MRIs and it showed bone spurs (caused by the years of inflammation untreated) which would account for the nerve compression symptoms I get. The bone spurs won't go away, but the inflammation reduction by Humira has helped greatly.

I always must sleep in my recliner now due to my neck, can only drive my very old Saturn and looking for a new car is a challenge, travel by car or plane etc is always very difficult, etc. But if I'm careful how I sleep, sit, etc, I now do pretty well thanks to Humira and good doctors now.

I suggest asking for an MRI and a nuclear bone scan (NBS) of your cervical spine.

Short term relief that you can do yourself?
the right pillow (for me that used to be a flat feather pillow and laying on my back)
ice alternating with heat, but mostly ice
the right NSAID or cox2 inhibitor for you (for me that's Aleve)

other things you can do relatively short term:
ask the doctor for a prescription for KIP gel
asking the doctor for an MRI and/or NBS
asking the doctor for a prescription for manual PT (just be careful)

my neck always settles back down within a few months, but in the meantime, yes, quite troubling.

also in the past when it was bad, the muscles would weaken from the muscle spasms that would accompany the cervical spine inflammation and so doing neck strengthening exercises was really important. When I could swim (now it bothers my SI joint so I can't), that helped strengthen my neck better than anything. But PT / yoga exercises were helpful too. This time it was a lot more localized to C2-C3 and C3-C4 and where the head and spine attach and much less muscle spasms.

I too just started experiencing this. I have been on Humira for a little over a year, which has helped tremendously. However, about a week ago or so, my neck started to get very stiff. It is hard to turn my neck to change lanes when driving etc. Mine is also kind of right at the base of my skull on both sides. I have tried icing it, Aleve, stretching and it is not getting any better. I had an appointment with my rheumatologist last week and asked him about this. He said it may or may not be related and that he could give me a stronger prescription NSAID, or send me to PT. Other than that, he said I am already on Humira. If it keeps up he would order x-rays/mri. It is so frustrating dealing with this as I feel like there really isn't much I can do.

See my post a couple above.

Recommend MRI. X-Ray no good, does not show enough. Need the soft tissue etc. Same refers to CT scan. MRI, and ensure doctor orders up differering / different planes. Axial, coronal, and sagittal images, fat-sat / and all points to Rome <g>

MRI will better demonstrate associated soft-tissue/ligamentous injury and associated cord and nerve compression.

Nuclear medicine bone scans are the most sensitive method to detect both sclerotic and lytic lesions (lytic lesions sometimes being photopenic).

Might want to consider *both MRI & Nuclear Bone Scan.

Physio therapy from a train therapist in AS matters. They will need to see MRI *before treating...

Neck brace will help.

Avoid the injections, don't always work for everyone, and any good effects tends to be short lived.

Pain killer ? I found Celebrex excellent, until it caused reflux a few years down the line. Best to take a gut protector.

Can sympathise re driving and checking over shoulder...Ho-Hum ! Get one of those mirrors used by the disabled.

Take care -

Molly C - Keeping on, Keeping on (as we all do...!)

Thanks for the reply. It hasn't been getting any better, if anything it feels worse. I am going to talk to my dr. and see if they can schedule and MRI to at least know what is going on and then go from there.