Well, I wish I never heard of it myself. "Ankylosing" means the "abnormal adhesion of the bones of a joint." It is equivalent to the bones fusing together. "Spondylitis" means an "inflammation of the vertebrae." Together, Ankylosing Spondylitis (AS for short) is an arthritic condition that attacks the spine and often spreads to other areas of the body, such as the hips, shoulders, neck, and ribs. It usually begins as a dull pain in the lower (lumbar) region of the back, eventually spreading upward to the thoracic (chest) region. Basically, inflammation of the vertebrae occurs, followed by the fusion of the vertebrae as calcification occurs at both sides of the joints in an effort to heal. The condition is very painful and chronic, and there is no known cure. Ninety percent of people who have AS test positive for the antigen HLA B27 in a DNA blood test, and 10-15% of people who inherit the gene will develop AS. AS attacks 1.3 people per 1,000, is considered a rare disease, and attacks men fives times more often than women.

I first encountered continuous back pain in my early 20s following a motorcycle accident in which I severely compressed the vertebrae in my lower back above the sacroiliac. The pain never subsided. I always thought it was normal. In my 30's, the pain became more acute, often incapacitating me for days at a time. I sought medical help and was always sent to physical therapists between 1990 and 1993, assuming the condition was muscle-related. In November, 1993, a physical therapist told me he was having no success with me whatsoever, and suggested I may have AS, the first time I ever heard of the words. I was sent to a rheumatologist, who took a few looks at my x-rays, did the standard AS tests, and confirmed I had AS. Interestingly, AS is associated with a severe eye infection called "iritis," which requires an ophtalmologist's supervision. I've been having bouts with iritis since my first bout in 1976. Fortunately, my last bout was in 1989.

It means having to adjust to new ways of doing things, having to learn how to deal with chronic pain, and having to learn some discipline in taking care of oneself. AS is more painful in the morning, but gradually subsides in pain as the body moves about and especially after a hot bath or shower. I found that one has to change one's ways of doing things. For instance, getting out of bed used to be a chore (a ritual lasting a few minutes) until I discovered that locking my foot in the baseboard of the bed and rolling out was much easier and less painful. Tying my shoes is nearly impossible. Sneezing is the most painful of all, as my breastbone has become platy, my ribs have lost their capacity to expand, and my lung capacity has decreased by 20%. In other words, you MUST learn to cope with the condition, and learn new ways of doing things. I try to lead a normal life, although I certainly can't do some things like I used to.

I don't do anything fancy to keep my condition in check. I have used prescription medications, such as Motrin (usually presciption strength 800 mg tabs) along with Tagamet. I currently take 100 mg indomethacin daily. Physical therapy helps tremendously, but make sure your therapist knows what he or she is dealing with! None of those muscle-ripping, pretzel-shaped, shock movements! Bascially, the therapist tries to get some motion in my vertebrae with gentle pushing motions, a lot of massage, and some heat treatment. I always leave feeling better. Finally, stretching and exercise routines help maintain flexibility. I don't work out in a gym anymore, but rather just do home exercises. Stretching the muscles in the back is the best thing I've found, as well as chest expansion exercises. The condition has spread now to my shoulders, but I've found simple "arm whirlies" and arm stretches keep this in check. I still hike and camp and carry heavy backpacks, although I have trouble getting into my small tent! Remember, no flexibility in one's spine means having to do things differently.

Well, this is part of my therapy. For so long, I've put this condition in the back of my mind, and it was often secondary in my life. I can no longer let it be secondary. I've also not told anyone of this condition - it always seemed to me to be so personal. But I've seen what others have done, and I'm encouraged to do the same. So, yes, I would like to hear from anyone else with AS, and maybe we can trade ideas. Just click on my e-mail address listed below in the address section.

This isn't meant to replace the more comprehensive links at other sites, but here are a few of my favorites. Remember that AS is a form of arthritis, and much information can be found from such agencies as the Spondylitis Association of American and the Arthritis Foundation.