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Ankylosing Spondylitis: Our Family's Experience with Rheumatic Disease, Part 1

Updated on June 6, 2012

The tones came blaring over the scanner yet again, the dispatcher’s monotonal voice calling volunteer firefighters to service. Maybe it was a grass fire…that’s the kind we get the most of around here. All I remember is that, for what seemed like the millionth time, my husband rolled over, turned off the scanner, and announced that he was too sore to go to the call. His back was so stiff that getting out of bed on a normal morning took several minutes, let alone at 2:00 A.M. with only four hours worth of sleep.

I was frustrated in more ways than one. I believed in the work that the firefighters did and wanted to be supportive of his commitment. But I hated being woke up in the middle of the night repeatedly when it was clear he was in no shape to be fighting fires. When I suggested that he resign from the department until his back pain cleared up, he was obviously upset. And he wasn’t ready.

It wasn’t just losing sleep that was getting to me. Friends, family, and church members had asked me on numerous occasions what was going on with him. Watching him get around was painful for observers. He was unable to turn his neck (which made driving dangerous) and at times suffered from hip pain that defied explanation. When people approached me about it, all I could do was shrug my shoulders and shake my head. I didn’t know the answers to their questions, and the worst of it was, he acted as if he was oblivious to it.

He had been to the doctor for his back pain several times, and each time they had diagnosed back strain and prescribed medication, sometimes narcotics, to treat the pain until it healed. Only it never did. He said that each time he went back, however infrequent, they made him feel like a junkie trying to score drugs. All he wanted was to feel better. They sent him to physical therapy, but his symptoms only progressed.

At some point, he decided that he should see a chiropractor. After every appointment, he would feel some slight relief for a very short period of time. The massage therapist at the chiropractor’s office announced that his back muscles were the tightest she had ever encountered. After several visits, there was still no improvement.

Our life began to revolve around his pain. We stopped camping, because anything besides a real bed left him practically debilitated. Our house, over one-hundred years old and built into the side of a hill, had about seventeen steps at both entrances. During his bouts with hip pain, getting in or out of the house was excruciating, and he would borrow a cane from his grandfather because his hip pain made it impossible to get around. At times, we stayed in the bedroom of my parents’ walk out basement so he wouldn’t have to go up and down any stairs. Our two older children, in preschool and kindergarten, started sensing when he wanted to get up off of the couch and would scurry to get behind him and push. He couldn’t get the baby in or out of the crib. Normal dad stuff, like running around and roughhousing with the kids, was non-existent. He finally resigned from the fire department. My mother’s constant refrain to me in private was, “Something is not right.”

At first, I tried to be empathetic, but eventually, I began to harbor a growing resentment. I couldn’t maintain the house by myself. We didn't schedule the outings we wanted to, couldn't go for walks, couldn't even go to the Y. Most of all, I was angry that he wasn't getting it fixed.

If he would just get into shape, he would feel better.

Why doesn’t he make the doctor pay attention to what’s going on?

Why doesn’t he see a specialist?

If he’s really in so much pain, why doesn’t he do something about it?!

Wallowing in my own self-pity, I nearly had myself convinced that he was using his pain as an excuse, a cop-out, for every aspect of life. I thought if he would just get more exercise, see a specialist, learn to work through the pain, we could just get on with our lives.

One morning, the phone rang. It was his mother, with the name of a back specialist she wanted him to see. Like the rest of us, she was tired of waiting for him to act, and worried about her son.

The back specialist used words that neither of us had ever heard before, like stenosis. He suspected that his spine was fusing, and referred him to a back surgeon.

After his appointment with the specialist, we had more questions than answers. He was anxious about seeing the back surgeon – nobody likes to think about being cut open.

According to the back surgeon, the x-rays indicated that my husband’s spine was indeed fused. He recommended back surgery to separate the fused vertebra. Furthermore, he suspected that the cause of the fusion was ankylosing spondylitis, a disease we had never heard of. Few people have. Caused by an antigen that many people carry with no ill effects, ankylosing spondylitis is a rheumatic disease along the same lines as rheumatoid arthritis. In essence, a person who suffers from rheumatic disease is under attack from their own immune system. A blood test would confirm if my husband carried the genetic marker that made it a likely diagnosis. The surgeon wanted to consult with other members of his team about the case before scheduling surgery. In the meantime, he recommended a website dedicated to ankylosing spondylitis.

The website’s home page featured a two-page article about ankylosing spondylitis. I remember thinking as I read the first page, full of medical jargon and dire prognoses, that it sounded nothing like what we were experiencing. By page two, I was nearly in tears. A long list of symptoms that no normal person would string together as caused by the same disease, and my husband had them all. Uveitis, a severe eye-irritation that caused light sensitivity. Unexplained fevers and chills (he had once insisted on turning the heat on in the car during a family trip in July, his teeth chattering). Fatigue. Psoriasis. Bowel Inflammation. Ankle pain. Hip pain. Chest pain. Back pain.

The prognosis was disheartening. It didn’t help that the logo for the website showed, in silhouette, the image of a person becoming more and more stooped over with the progression of the disease (they have since changed the image). Left to itself, ankylosing spondylitis causes spinal fusion. If the patient does not take measures, such as sleeping constantly on their back with only a neck pillow, the spine would fuse pitched forward into a stooping position, rather than straight. Calcification caused the vertebrae and other joints to “square-off”, losing their rounded shape and keeping them from working properly. At that time, the website, and all available information I could find, offered no hope for recovery or improvement.

The next few weeks were agonizing. Still in constant pain, and deteriorating more and more quickly, we waited every day for a phone call from the surgeon. My husband tried not to let on, but the prospect of back surgery terrified him. It frightened me, too. I had never heard a good story about back surgery. After the first week, he called the surgeon to find out what was going on. Still no decision…a snowstorm had delayed the weekly consultation team meeting. So we waited another week. Finally, a phone call. They were referring him to a rheumatologist.

For more on this story, see Ankylosing Spondylitis: Our Family's Experience with Rheumatic Disease, Part 2


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