Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Anky Spon & the Neck

Hi All- I would like to know if anyone has got problems with their necks as a result of AS.

I've been having troubles with mine for the last 18m. I had a nerve blocking injection which was more painful than the symptoms! It did not work.

My Rheumy (York DH) says that there is not alot he can do for me. Apparently NSAID's don't help, only analgesia. He has referred me to the pain clinic who can inject a steroid using an x-ray machine to locate the inflammed area. There is a 16/18 week delay. So, I'm being referred to the local Nuffield.

Any experiences ?

Mike

Hi, Mike:

I learned of the NSD too late to save my own neck; it is now hopelessly frozen due to increased progression of AS while taking NSAIDs (and eating too many starches).

After I broke my back (thanks to AS and resultant osteoporosis), the steroid injections really helped and they were administered under fluroscope. The neck pains, however, finally relented after prolotherapy treatments.

Peanut oil (cold-pressed) rubs can help reduce the inflammation locally, and castor oil packs, properly applied, are also very useful.

If you can maintain ROM, despite the pain, life will be much easier in the future!

Hope you will join us on the NSD Forum.

Regards,
John

Hi Mike, Yep neck problems. Have you had an MRI to determine what exactly is going on in there? I think you will find that most AS'ers have problems with their neck. As a matter a fact the area from the last cervical vertabre to the beginning of the thoracic is very suseptable to fractures in people with AS.
By the way I thought it ironic, you live in York, UK and I live in York, PA USA
Cindy

Hi Mike,

I am very familiar with the neck pain. Sometimes it shoots into my head and I end up with severe head pain.

I get relief by doing my neck exercises and stretches. My doctor wants me to exercise with light weights.

I have moderate success with the use of Celebrex, but I need Neurontin (Gabapentrin) to help with the nerve pain. I am using Digesic to control the pain when it is ultra-bad.

I have a lot more success when I exercise and stretch my neck, even when it hurts because in that way I have maintained my flexibility over the years (I was diagnosed this year but have had strong symptoms for 18 years).

When I first suspected or rather when AS was first mooted as a possibility, I began to read about the disease. The advice has always been that you need to exercise to help keep the disease under control and that it must be done every day. To this end I now participate in hydrotherapy at least 3 times per week.

MaggieinOz

Hi,

my first simptoms started with neck, some 10 years ago, and they are still here................
But,...... I was taking some pain killers, and good massage, and it helped a bit.
Try warming it up, relaxing,........
hope it will be better

sanela

Hi Mike,

Oh yes, my neck is one of my worst places. I have no more 'natural curve' to my neck. (like a victim of whiplash) and have to constantly do stretching. I've lost a lot of ROM in my neck. And during a flare if my neck is really bothering me I get dizzy spells.

I hope you can get some relief soon.

Take care,
Pam

Well I had severe whiplash back in 1981. It happened a few months before my mother in law died as a result of breast cancer. I had a torn neck muscle and stretched ligaments.

I was diagnosed as baving arthritis in the cervical spine in 1996. So I have officially had the arthritis in my neck for the past 10 years.

When the arthritis is active I get the most awful pain in my head. It can start if I lie the wrong way in bed. It is very severe head pain.

I can really relate to what John describes. I attributed the classic lower back pain to getting older. However, when the severe neck pain and stiffness progressed rapidly several years ago, I began to realize that something was wrong. My primary doctor diagnosed it as torticollis (commonly referred to as wry neck) but my rheumatologist (who I began seeing several months ago) tells me it is all part of AS. Fusion of the C5-C6 vertebrae confirms his diagnosis. The neck pain often radiates into the head causing severe headaches. Most people ask me if I have a stiff neck.

Exercises, hot showers, muscle relaxers, and occasional physical therapy allow me to move my neck at least a little bit. Driving is difficult and I must compensate with mirrors and caution. Of course, the other joints are painful too due to AS but it is my neck that causes the most pain and discomfort.

The best advice I can give you is to keep the neck as flexible as you can. If you allow the neck to freeze, it is extremely difficult, if not impossible, to restore movement. Don't let your condition drag you down. You can find help and comforting words here at KickAS anytime.

Patrick

I agree with Patrick with regards to his recommendations about flexibility. Since I have been fighting neck pain for over 24 years, first due to the whiplash and then due to problems I had during my work in the public service (and ever since that time), I work very hard at keeping my neck flexible.

There are some very simple neck exercises that can be done. Stretching the neck, even when in severe pain is essential. I am pleased to report that my physiotherapist says that I have a flexible neck, even though I have problem spots such as C1 and C2 (these are the ones that give off the kind of pain that I have been experiencing). I have had periodic x-rays of the neck and things have not worsened over a period of 5 years, which is good news.

The flexibility exercises are an essential part of the daily routine.

MaggieinOz

Pam, I glad to hear you say that your neck causes you to be dizzy. Now don't get me wrong, I'm not glad that this happens to you, only that it helps to confirm what I've been saying about me. A few years ago I was having a lot of trouble with being dizzy. My doctor sent me for all kinds of tests, even a sleep deprived brain scan (this was interesting, my husband was on a fishing trip, of course, so I had to go without sleep for a night and then drive 130 miles to the testing place. I couldn't have any caffeine. I was sure glad to get there in one piece ) Anyway then never did find anything conclusive, but I said all along that I thought it was coming from my neck. I think it's not allowing enough blood to circulate to my brain. I think this may also be a reason why I have memory / concentration trouble. Besides getting dizzy, do you find that you have trouble with motion sickness? I do, and it's gotten worse and worse over the years.