Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I have terrible neck pain

Hi everyone.For about the past 3 weeks or so i have been having terrible neck pain.I am sitting here now @ 2 am because i cant lay my head on the pillow in my bed without having terrible pain at about the very top of my neck.Almost where it connects to my scull on the back of my neck.I also have very sore sides of my neck pain.I take precription nsaids to try and aleive it ,but to no avail.I am also on Humira ,a biologic drug.The humira seems to be working less effective i think.I cant get to sleep even if i take my sleeping pill i was prescribed.I just have to stay awake until i am so exhausted that eventually i will fall asleep for a few hours at least.I am thinking of calling my rheumy on Monday to see if there is someting she can prescribe...i cant take this much longer.It even hurts when i ride in my vehicle and hit a bump in the road it sends pain levels through the roof.

My question is.......is there anyhing you think that might help this pain....is it just a flare that will eventually go away.Is there anything that works for you guys that i could ask my rheumy about.I do have neck fusion and always couldnt turn my head up or down or sideways,but this is not normal for me.A person should be able to lay their head on a pillow and go off to rest.Im wondering if the rheumy will mabe prescribe Predesone or methotrexate or something like that.

Any suggestions would be greatly appreciated.

Thank-you
John

my neck isn't fused, but i do get neck pain, mostly muscle spasms, though sometimes its the bad discs a bit out of alignment.

things that have helped me. some maybe you should check with your doctors first if you are fused.

•i always sleep with the thinnest softest feather pillow to support my neck. if my neck is good and i try any other kind of pillow it will cause my neck to act up. mine came from LL Bean, but probably any good one would do. and i sleep on my back. this keeps my neck in a perfectly neutral position.
• If its muscle spasms, heat. i'll go to bed with one of those old fashioned "ice bags" half filled with hot water.
• ultrasound by PT (now i have a home unit, my husband knows how to do it safely) has worked wonders at getting muscle spasms to calm down.
•all those muscle spasms actually activated a triggerpoint in the occipital muscle in my head. had a physiatrist do a triggerpoint injection of it, it was wonderful.
•there are other occipital muscle injections to help that muscle settle down, its just above where you describe.
•all those spasming muscles cause them to weaken, then they spasm even more. i do a simple exercise against gravity to help it not get too weak: i lay on my bed with my head off the edge and just lift my head a little against gravity, all four directions. essential for me when the spasms are bad. i used to swim to maintain it, but can't due to SI. the isometric exercises they teach you to strengthen the neck don't seem nearly as effective for me. the lifting it against gravity works much better.
•PTs and now my chiro do light manual traction. it is heavenly for me.
•TENS may help.
•i have a topical triple nsaid ointment (KIP (10% ketoprofen, 10% ibuprofen, 2% piroxicam)). it works well when those cervical discs are a bit misaligned. i get it from the compounding pharmacy.
•i try hard to keep my upper back spasms to a minimum cause if they kick in, the neck kicks in.
•i always look straight ahead when watching tv, talking to others, etc. i can turn my head, but if held in any position other than straight ahead, it spasms.
•i used to use a neck pillow to watch tv, but found that just allowed my neck to weaken too much, making it more prone to spasms.
•stretching, but that alone is pretty futile if the spasms are already there. i've found stretching only aggravates spasming muscles.
•the longer it spasms, the weaker it gets, and the more it spasms, can be a downward spiral if i'm not careful, but all those things above do help, even when its spiraled down pretty far.

sorry to hear about your neck. very exhausting pain indeed.

last fall the back was bad causing the neck to get involved. every night i slept with my feather pillow scrunched up around my neck, with that hot water bag. and every day i did those strengthening exercises and the ultrasound. it was a constant battle til i got the back settled down. and then when even the head muscles were spasming so the soft feather pillow felt like a hard brick. yes, was only getting an hour or two of sleep at a time, for a total of 3-5 hours a night for a few days here and there. remember the PT doing ultrasound on my neck at least helped that pain subside.

i wish you well.

Thanks so much Sue for taking the time to type that long reply.I appreciate it very much.I will look into getting mabe a hot water bottle and i have a very thin feather pillow.Ecercise for me in the neck is out of the question....way too painfull.

John,

I hope you get what you need from the rheumy soon. I'm on Humira too. I had a really bad spell last summer only a few months after first finding relief with Humira. At that time my rheumy gave me prednisone for "flares". That bad spell decreased to several bad days at the end of my 2 week humira cycle. The last cycle I didn't need any prednisone boost. I've used both heat and ice on my neck and both feel good.

John

Hi Sue,
Very good reply. This shows the amount of troubles faced by the AS people.

JAY

I have been in a severe flare up for a week now and my Rheumy gave me prednisone. I dont sleep much at night for the pain but i do use heat like John does for a little releif!
Deb

you're welcome, but glad to, so many have helped me here with neck pain in the past!

if your neck muscles are weak and spasming, some PTs and chiros use electro stim, very mild, hardly noticeable to help "work" the muscles. the chiro is doing this for my back. does seem to be helping.

Hi John,
Welcome to the club I'm sorry your going through this it goes with neck fusion I'm afraid. It will subside but can take a while I'm like Alan we have never found anything that really helps. I do have a soft collar that gives some support at night and a heated neck scarf that gives a bit off relief. I know its hard but try and move as much as you can and gently massage the area. This is one of the worst pains that goes with AS and neck fusion. I know how you feel the pain is unbelievable. Hope it fades soon.

Kevin

Thanks a lot John,Jay,Deb,Sue,Kevin.Your input really helps me.Here it is 7 AM now and i got to sleep at 4:30,so i got 2 1/2 hrs sleep to-dday and the same yesterday Geeeeez.I dont mean to complain,but holly mackerel this is a painfull thing,and theres not much docs can do about it is the troubling part.Any little pressure with my head on a pillow and im up and outa there.Im wondering if its the weather.My elbows hurt,my knees,my collar bones,wrisks,and my neck is really bad.

Is it possible that this Humira drug can loose its effectivness?
Im sure Kevin that you have seen ,felt,and heard it all,and thanks so much for the help.

John

Freezing cold here in Ontario Canada

Wmy neck fusion began and the neck pains like you were having began it was the worst time in my AS battle. I dreaded going to sleep anywhere. Bed wiith pillows or recliner, it didn't matter if I nodded off the muscle spasms when I tried to lift my head when I awoke that started at the base of myu skull shot up and into my eyes.

It literally hurt to open my eyes. I would drive my car and every little swerve that required my back and shoulder muscles to tighten to support my head hurt my neck.

I found that only massage of those muscles gave me relief and got me through that period. It got me through somje unbearable days. Acupuncture gave me relief too. My insurance covered the acupuncture and I would pass on meals if I had to in order to pay for one neck/shoulder massage a week to keep the pain manageable.

I hope you find an answer.