Hello,

I get a kink in my neck every 3-4 months or so, only on my right side. This has been going on for the last two years.

It's not the way I sleep. My normal doc said kinked necks are typically the result of activity during the day and the pain/stiffness sets in at night. My rheumatologist said the reoccurring kinks could be related to AS, but he wasn't certain.

Does anyone else experience something similar? Has your rheumatologist definitively said this is a symptom of AS?

I was going to see a chiro, but then I read the Spondylitis Association of American discourages that.

it is one of my biggest problems left after 2 mounths on a NSD diet. I get it nightly and have to roll my head around in the morning to clear it. I have been playing around with different pillows but no luck so far.

I get it often and my physical therapist said it is because I'm not breathing with my diaphragm. I thought he was crazy until I went home and practiced it (totally foreign feeling at first.)

No more kinked neck until last week when I neglected "practicing" my breathing every night when I got into bed. If I catch it in it's early stages I can "breath it away."

So when you breath "correctly," your shoulders and ribs don't move, your belly does. It's easier to see while lying on your back. When I first tried it my stomach shook from the weak muscles, but built up strength quickly.

My PT can fix my kinked neck in a matter of minutes but $ does not allow me to go as often as I would like/need so it is awesome that he continues to teach me ways to take care of these types of problems myself. He is a "manual" hands on physical therapist. He is awesome.

P.S. lol, This last kink I had seemed to be worse than normal and I couldn't breath it away, but what helped was that I was trying to rub/massage it myself and I kind of mimicked a technique the PT uses. My kink was on the left, I lotioned up with some muscle rub/essential oils and so my hand was slick. With my right hand I pulled down/forward right where my shoulder and neck meet and at the same time turned my head to the left "into" each stroke. After five of these, I felt something give and it started to feel better after 5 days of agony. The PT checked it today and he said I did it right because my neck wasn't to far off. YAY!

It depends on the chiropracter -- they need to understand that AS patients can't be manhandled like an ordinary person to get things back in line. There is a local one who is quite cautious about that, but I'm afraid my spine is too far gone to benefit much.

not sure if its a "kink" as much as muscle spasms.

been dealing with it since 1998.

first PT, manual PT as donette said.

then also a physiatrist, dr of physical / rehab medicine.

but the PT and physiatrist in this new town weren't as effective, so had to shop around.

now i have a chiro (who is very gentle with my neck, so i do think you gotta go to one who knows and treats others with AS) and an interventionist.

my problem stems from bone spurs in my C-spine, which probably stems from the spondy, as I have bone spurs in my L-spine near the SI as well, and bone spurs are pretty common for us. common for others as well i'm told, but then why doesn't everyone have the issues we have? anyway, definitely bone spurs pressing on nerves causing my problems in my neck.

manual soft tissue work (by a PT or chiro) help me.

ultrasound helps me.

cortisone injections into the facet joints by the interventionist helped, though short term, so probably the least useful longterm. but was a good diagnostic; think that's the main reason he did it.

triggerpoint injections into the upper back muscles help calm it all down.

stretches help. strengthening exercises (for the neck) help.

an antiinflammatory creme (KIP (ketoprofen, ibuprofen, piroxicam) made at the compounding pharmacy) helps.

antiinflammatories in general help, but can't take nsaids myself.

sleeping only on my back with only the thinnest feather pillow supporting my neck to neutral is mandatory for me.

always facing forward when looking at tv, someone i'm talking to, etc. if i keep my head turned, big problems!

this little gadget is unbelievably amazing at realigning my neck to neutral, taking the pressure off the nerves, and allowing the spasms to calm down. ~20 minutes on it work as well as manual traction in the PT's or chiro's office.

http://www.amazon.com/Real-Ease-Neck-and-Shoulder-Relaxer/dp/B000BMI4SW

(don't laugh, i did, as i thought, how in the world could this little thing actually do anything, but since it was so relatively cheap (for me, one PT or chiro visit), i figured i had nothing to lose. so glad i'm willing to try things if they seem safe and cheap.)

manual traction works well for me. the machine traction is a bit too much for me.

oy, my neck has been one of the biggest challenges of the last 14 years of my life!
but the doctors, PTs, chiros i've found to help me manage it have been life savers for sure! but its a constant battle.

Hi,

Pre my AS diagnosis, I woke up one morning and my head was stuck in a not quite upright position. There was like a triangle with my nape of neck the apex and muscles? down either side. It was weird and scary as I had no recollection of doing anything that would have caused it. It eased off slightly and my neighbour who is a physio checked my movement and said everything was fine. In this instance having a physio handy may seem a good thing however I wish I had gone to see somebody about it straight away, except of course it was a weekend.

Since then it happened only once more but my nape of neck bone is more prominent than it used to be and I cannot put my chin to my chest apart from possibly at the end of the day. I mentioned it to the rheumatologist who took an xray and said all was fine. I was hoping it would show something out of line/joint. I am not sure the xray went as far as my nape bone though, stupidly I pointed rather than specifically saying my nape. I also didn't emphasise that the promenance was not normal for me as I used to dress make and was always taking measurements from my nape bone so I knew it wasn't right. As far as whether it is part of my AS I have always found the rheumatologists very lacking in detail and information. They seem to only want to impart the least they can.
I am LSD/NSD and through this am pain free other than my neck which still remains intermittently stiff, sideways movement as well as looking down. I suppose its a plus as I won't be able to fuse with my chin to my chest as it wont go there! When it is bad I also find it hard to lift my head and I generally ache at the base of my skull.

I find my neck is better (sideways movement) if I place a rolled up towel under my pillow where my neck sits.

I have wondered about seeing an osteo/chiro but like you was discouraged after reading the info and I think having lived with it for well over a year it is probably too late to do anything if anything could be done.

never too late. go see a doctor. spine center good place to start.

for example, my neck problems really started severely back in 1998. took about one and a half years before i found the PT who really helped. by then the muscles were so atrophied from all the spasms, but she really helped.

then when i moved, again, no one to really address things. for the first few years, things weren't so bad, and i could manage it through what i learned from that PT and a physiatrist before i moved.

but then things got a lot worse and only minimal care from the doctors and PTs.

but, then when i found someone who really knew what he was doing, my chiro, once again, huge improvement.

then he recommending my interventionalist, and he also helping me in ways that no one else ever has (like that cortisone injection to the facet joints in my c-spine).

so, never assume its too late. when you find the right doctor / PT / chiro, you can get help and then can really turn a lot of it around.

yes, good to be cautious of chiros. I'd been to others before on the recommendations of friends but wouldn't let them do more than the ultrasound that PTs also did. the straight old fashioned stuff is dangerous for us i think. but if you find one that works a lot like a manual PT does and does mostly soft tissue stuff, then it can be ok. mine works for the local sports teams, does sports medicine, i think that's why he's so good.

also, while they can help a lot with the soft tissue stuff, some things are more permanent, like nothing besides surgery will ever get rid of those bone spurs that are causing all the problems in that area. but surgery very risky so that's a last resort. so long as we can manage the symptoms, won't be doing surgery. though i still need to schedule a consult with the surgeons just to be prepared. the interventionalist didn't mention surgery until he saw the size of the bone spurs through fluoroscopy while he was doing the cortisone injections.

due to my bone spurs and their location in the facet joints on the left, i can never really fully turn my head to the right. i could for a few weeks after the cortisone injection, but other than that, it hurts to turn it very far, so i just don't for the most part. makes driving a bit of a challenge; have learned to position the car at intersections that aren't 90 degrees so that i'm not having to turn my neck / head more than about 90 degrees.

I have a hellish neck - second major flare was neck. It got stuck, remained locked down (yes, locked to my chest) for about three months, with aftermath of some further nine months. Had to use my hands to push chin 'up' and then set head back straight 'on' neck! Was horrifically painful Then it cleared. Then it flared, again, for another few months.

It has little movement now. Turning head, some. Side to side, no. Down, yes. Upwards, No. Hurts, yes. An osteophyte jabs into my esophagus, makes me cough and gives me intermittent dysphonia - hoarse voice. And intermittent dysphagia - can't swallow, choke.

Nice wee bone jamming into throat. So nice. There is an op that can remove the bit of osteophyte, but it is dangerous and at my age, is it worth it? Still cogitating that one. Dunno. But sure am massively tired of painful neck, coughing endlessly - which then leads to a strider episode! Choking on food and this wretched hoarse voice.

Can't invent AS.......

Muscle 'lock', or spasm on one side of neck was a problem for me ever since I turned 19.
Light IBS came in mid twenties.
Plantar faciitis in late twenties, then
worsened IBS, fatigue, colds/flus galore, major fatigue, and by
mid thirties full-body joint/muscle/tendons aches, stiffness and nasty SI-to-neck pain.

Keeping to strict diet has removed the neck pain and most other symptoms (yeehaw!), but is the first one to come back when I eat things that don't seem to agree with me (nuts).

Doctors who claim that neck pain is not part of the spondy symptoms & signs - I disagree.