Kickas.org Forums Ankylosing Spondylitis General Discussion Helpful Tips Need advice to calm anxiety

Hello everyone,

My name is Oksana, I am 25 years old and have been diagnosed with AS for about 3 years now.

This evening I am having some anxiety due to a new emerging symptom. My rheumy does not communicate via e-mail and in Alberta, Canada it is almost midnight.

I have been experiencing a new neck pain over the spine, slightly to the left. It happens when flexing and extending the neck, not on turning my head. It started about 5 days ago. I woke up with the pain and assumed I slept on it funny. Have been applying heat and stretching with no relief. I just had the epiphany that it may be AS and not a muscle issue.

The majority of my symptoms have been in the SI joint and hips.I am on Celebrex and Sulfasalazine and have had pretty good control for the past 3 years with occasional flares. MRIs have been clear in the rest of my spine up to date. My last MRI was last year. In August my C-reactive protein was randomly elevated although I was not having any pain. It usually only elevates with flares. Currently my pelvis is fine I do not feel a flare coming.

I am wondering if anyone has experienced pain like this which skips the rest of the spine. To my understanding the AS ascends up the spine and does not skip like this from pelvis to cervical spine. Hopefully I am just freaking out for no reason and it really is a soft tissue issue and not related to my spine. Any feedback that could calm my anxiety would be much appreciated.

Thanks,

Oksana

For me, started in the neck and wrists (and ribs). Then 2 years later, in the SI. And for the last 15 years, its been predominantly neck and SI. The rest of my spine isn't nearly as bothered as those two areas.

If heat didn't help much, you could try ice.

Also, see a PT for your neck if it continues to bother you. I had manual PT for the first few years, it helped a lot. Took me awhile to find the good manual PT, but once I did, what a relief. Up here couldn't find a decent PT, so have a chiro that does the manual traction and soft tissue work my neck needs. But he is very good and very cautious with me; I wouldn't let just anyone work on my neck.

I now have a home ultrasound machine because in the PT's office, it was so helpful, on both my neck and my various enthesitis problems.

I've also had trigger point injections and facet joint injections to address my neck problems.

The muscle relaxant zanaflex that I take is largely for my neck (and upper back tightness caused by the neck inflammation). Be wary of taking flexeril; zanaflex and skelaxan are much better drugs. Flexeril is cheaper, but that's all it has going for it as compared to the other two drugs.

How I sleep, how I lay, how I sit, all contribute to the well-being of my neck.

And when all else fails, a short course of prednisone has worked wonders. That plus aleve plus muscle relaxant plus ice plus heat plus PT or chiro plus ultrasound plus not sitting and somehow I got through the worst of the flares.

Hoping Humira will continue to keep things more calmed down than before.

Still can't sit very well due to my neck. Oh well, at least I have a chair in my office that I can lean back in and have my recliner at home that allows me to sit with some comfort most of the time.

For some reason, heating my back on low with a heating pad or icing my back, helps keep my neck calm….

Hopefully it resolves itself. To calm yourself while you wait, I'd just try to think that no matter what happens, you'll find a way to manage it, and you will get through it. After all, if it's as then it's as, not much you can do about it at this point except check with your dr, which you are trying to do. And if it is as, then maybe your dr can can tweak your meds to stop it from progressing more. Good luck!! I hope it's just a muscle thing. I had pain in my neck for like 2 months and it just randomly resolved itself. For me I have pain in my si joints, neck (not lately though), and various peripheral joints. I don't have much pain in my spine, except minor low back pain. I sleep with a tempurpedic symphony pillow and it helps me.

Thank you both so much okay not I know that there is a possibility it's AS. My neck actually hurts more this morning. Will try the tips you both provided thank you!

I'm a 35 yr old emergency doctor... I originally only had problems in my SIJs and various peripheral enthesitis points, but for the last year have had very significant neck pain. Makes work, reading, watching tv etc difficult. Physiotherapy has helped a lot, as has a cervical pillow, heat pack, range of motion exercises. As with managing anxiety related to pain, try reading some material on mindfulness and Acceptance and Commitment Therapy, ACT. I share your pain!

Oh mine skips everywhere. My neck is more fused then my back. It's almost completely fused now.

Thank you all for your advice. I ended up seeing my Rheumy before I went on vacation to Europe and he thinks it is enthesiitis in a few of the vertebra in my neck. He started me on Vimovo for a week instead of my Celebrex despite me telling him it would not work (as Naproxen was the first thing we tried and it did nothing for me). Off I go on an 8 hour plane ride to Amsterdam. Long story short this new med (or the long trip) set me off on a full blown flare. I gave the Vimovo another 3 days and after struggling to sleep and get up each morning I went back on my Celebrex. It tried to ruin my vacation but I trudged on through the streets of Portugal and Spain

Now it's new flare symptoms, some SI symptoms but mostly neck, ribs, and some thoracic spine pain. Boy oh boy am I not excited for this to progress I just hope this is just a flare and not a new norm. Now it's a waiting game to see if pain eventually subsides or if finally I have to bankrupt myself and go on the biologics.

I am and was the most positive person both my family and friends know but I feel like AS I sucking the joy and life out of me, I am in a dark hole and can't wait to get out. Sitting steaming myself in the shower now really delaying getting to work and waiting for pain killers to kick in. It really great to know I am not alone, I really don't know anyone in Edmonton or Alberta who's got this so this forum is all my support from fellow AS pts. I will definitely have to read this material you suggested killerwhale, if I can get a minute between pain and graduate workload.

Thank you all again

PS Sue 22, I did make an appointment with a recommended PT specializing in joints and bones, can't wait to meet her in a few weeks.

Good; let us know how it goes.

Sorry for your bad flare right now / on your trip. See if you can try prednisone and see how you respond. If you respond well, you'll know you can use that for trips; that's what I was doing until I started the Humira. May still need prednisone for trips myself; we'll see.

When in a flare, it does suck the joy out of life and feels like it will never end. That's when I get tunnel vision and just take it one day at a time. After 15 years, I have a lot of experience seeing flares come and go. Sometimes they are short (a week or so), some times they are long (a few months), but always they pass…..til the next one…that's how its been for me.

Now on Humira, I still flare, but not as bad. I now have more good days.

Looks like you have gotten some good tips and advice
Hoping by the time you read this you will be feeling better
Lisa