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Pre-Diagnosis Frustrations and Unexplained Pain

Prior to diagnosis with ankylosing spondylitis (AS), I over thought and agonized about everything. I was in graduate school to become a physical therapist (PT) when my life began to unravel. My pain started as one-sided buttock pain. I had recently increased my strength training regime so I believed it was just muscular pain. Being the inquisitive student PT I was, I of course attempted to self-diagnose and self-treat.

I tried stretching and NSAIDS

I believed it was maybe piriformis syndrome or sacroiliac joint dysfunction, so I started to stretch my hips more conscientiously and used the foam roller. The pain would go away after a week or so, and I would resume my regular physical activities without thinking anything of it. Then weeks later I would begin to get that all familiar stabbing pain in my buttock again. I’d limp around, use heat, foam roll, and stretch with very minimal relief. Naproxen did nothing but I wasn’t much for medications anyhow. Simple tasks like sitting on a firm chair or rolling over in bed were painful. These symptoms would cycle on and off for over a year, eventually getting closer together.

I realized something was really wrong

Graduate school ended and I began working as a physical therapist. About 5 months into work things really began to worsen, a turning point when I realized something was really wrong. I awoke in the middle of the night to use the bathroom. As soon as I stood and bore weight through my leg the most awful pain I had ever experienced shot through my buttock. It felt as if someone stabbed me with a burning hot poker.

I attempted to hobble to the bathroom but every step was excruciating. I began to feel nauseous, my vision was fuzzy, and my hearing was starting to go. I knew I was about to pass out. I laid down on the hard bathroom floor, tried to breathe, and make sense of what in the world was happening. Was this sciatica? Am I going to have to call into work tomorrow, I cannot walk? Is something seriously wrong? What did I do that caused this? Needless to say, I eventually got back to bed but did not sleep much that night. I finally realized this was not something I could self-treat anymore. I needed help, and I needed it quickly. From here the grueling diagnostic process began.

I questioned everything

Throughout all this, I began to question everything. I blamed myself for my pain exacerbations and felt like I was going insane. I blamed the pain on doing too many squats or lunges, having improper form, not stretching enough, eating too much sugar, and the list goes on. I kept a journal trying to find a relationship between what I did, or ate, or the weather that day, but continued to have no idea why this was happening. I was frustrated and angry, desperate for answers. I hoped and prayed there was actually something wrong, a name to the pain. If there wasn’t I didn’t know how I could work or function.

If you are awaiting a diagnosis and believe you have AS, this blame game may sound familiar to you. I know how you are feeling and you are not alone. Do your best not to ruminate on the "why," it will only make you feel worse. Keep seeking answers and find a doctor you trust. It will take patience, but it does get better.

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