Ankylosing spondylitis: This is not your grandpa's arthritis

By Branigan Knowlton

March 12, 2005 | What's frustrating about having ankylosing spondylitis is that no one believes you when you tell them you have it.

First of all, unless you're a doctor or a sufferer, you've probably never heard of the disease. Secondly, the disease's name sounds made up.

Ankylosing Spondylitis, AS for short, is a rheumatic disease that mainly affects the spine, which causes severe lower back pain. However, the disease is not limited to lower back pain. Joints and ligaments that allow the spine to move can also become inflamed and stiff. This includes the shoulders, hips, knees, groin and other areas of the body.

One thing is for sure, AS is a pain in the a-s-s. Literally, one area of the body primarily affected by AS is the buttocks.

I was diagnosed with this form of arthritis in November 2003. However, I had been living in pain since 2000. In 2000, I began experiencing sharp pains in my right groin and lower back. I was involved in three different sports leagues, so I dismissed the pain as sports-related. I rested for three weeks and then began participating again. I was able to play at full speed for three weeks before again being slowed by a groin injury. This time it was my left groin. I thought it was odd that the pain shifted sides, but I still assumed it was sports-related.

The next three years of my life were hell. The pain came in cycles. Every day I was stiff, but after moving around for a while, I loosened up. The real pain came about every two months. I would go through a three-week period where I could barely move. Getting out of bed was an accomplishment. I walked with a limp and had a constant grimace on my face. The worst part of the ordeal was that I couldn't do what I loved, sports. Even watching sports made me depressed. My friends would invite me to play sports with them, but I always had to say no. I tried to explain to them that my body just wouldn't let me play anymore, but they didn't understand. They started calling me "grandpa."

I was 20 years old, but felt like I was 80.

In 2002 I began to see different doctors. The pain had gotten to the point where dressing myself was a challenge. I started with sports medicine doctors because I still thought my pain was sports-related. Each doctor was the same; x-rays, stretches, exercises, and pills. The only thing that changed was the pills. One of the doctors put me on a steroid pill. It worked wonders until two days after I took the last pill. I was chasing down a baseball when my groin popped. I fell to the ground while running full speed. The pain was back.

A family member had suggested I ask the doctors to check my blood for arthritis. I had asked each of the doctors I saw to do so, but was denied based upon the x-ray results, which showed no sign of arthritis.

Finally, in November of 2003, a doctor listened to me and checked my blood. He found that I carried the genetic cell marker HLA-B27. According to the Arthritis Society of Canada, this cell marker is only found in 6 percent of the broad population but occurs in approximately 93 percent of individuals with AS. Having this cell marker does not mean someone will get AS, it simply increases the possibility. Based on my blood test, the doctor suggested I see a rheumatologist. I did, and after another round of x-rays, magnetic resonance imaging (MRI), and blood tests, I was diagnosed with AS.

A doctor finally telling me what was wrong with my body brought a little peace to my mind. He put me on a prescription-strength anti-inflammatory and a workout plan. The pills and exercises have helped with the daily struggles, but there are still those three-week periods where nothing soothes the pain. The periods occur about every three months now.

Upon diagnosis, I began researching AS. I found scores of online communities dedicated to educating AS sufferers. These communities also exist to provide moral support for its members. One particular community, kickas.org, has members from all around the world.

Mattias Haggquist, a member from Sweden, was diagnosed with AS in 1995. His father had AS, so he was not surprised when he began feeling AS-like pain in his back and spine. The United Kingdom's National Ankylosing Spondylitis Society stated, "If a parent has AS there is a 50 percent chance that the B27 gene will be passed on to a child. However, not everyone with the B27 gene will go on to develop AS. Overall, the likelihood of a child developing AS will be less than 1 in 10 (or 1 in 5 if B27 positive)."

Haggquist, describing how AS has affected his life, said, "two years ago I began to get muscle cramps/spasms in the rib area, which made it very painful to take anything but very shallow breaths, especially when lying in bed. Over a period of perhaps five years I never slept through an entire night. I always had to wake up to shift position in bed."

Lack of sleep seems to be a predominant problem with AS sufferers.

"It was in late 1979 when I had my last full night's sleep. Man, I'd give just about anything to sleep through the night without having to get up for a few minutes to loosen things up,"said Pete Marissael, also a member of kickas.org. "I've been sleeping on the recliner in the living room for the last two years. I really miss sleeping next to my wife."

Cade Osborn, an AS sufferer from Utah, was cut down in his athletic prime by AS. Osborn was a star athlete in high school and went on to play college basketball. Unexplainable pain in his hip and groin started to keep him from playing. He said over the span of several years he saw doctor after doctor hoping one could tell him what was wrong with his body. By the time a doctor figured out what was wrong with him, it was too late, his best athletic years were behind him.

"While playing college ball I had a hard time explaining to my coach why I couldn't practice. I was in unbearable pain, but I couldn't explain what was wrong with me. Coaches began questioning my commitment. I had some very mentally challenging times," Osborn said.

Osborn's sister, Karli, also has AS. She plays basketball at Lipscomb University in Nashville, Tenn. When she began feeling pain similar to her brother's, she knew she had AS.

"I about lost it," she said, after learning she had AS. "I thought I would never be able to play college sports again. For a while, I lost my confidence and went into a slight depression."

When asked to describe her battle with AS in one word, Karli said, "humbling."

Like Karli, most AS sufferers go through a humbling process where they learn their lives will never be the same.

Karli, speaking for what seemed to be the entire AS population, said, "I've accepted the fact I'll be fighting this disease for the rest of my life. But I will not be a victim. I won't stop fighting. I will get through this."

Even if it takes one achy step at a time.

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