How to overcome ankylosing spondylitis

By Jed Finley as told to Janie McQueen

I was diagnosed with ankylosing spondylitis (AS) in 1994 at the age of 12. It is becoming more common to diagnose younger people as doctors become more familiar with AS. But there weren’t many options back then, so I left it unaddressed for a long time.

I played hockey and other sports as a kid, so I was used to being in pain from training. However, in my early 20s, I realized something was really wrong. My knees, hips, and ankles creaked and popped with every step. I started bending over and people were really starting to notice. When I was a senior in college, my roommates used to call me “the old man.” It was obvious that I was a lot creakier than a twenty-something should be.

Because of the joint and back pain, I couldn’t do as much as I used to. I was a long-distance runner, and one day, in the middle of a 10-mile run, I pulled a full-strength Forrest Gump. I stopped and said, “You know what, I’m done.” I just went home and that was the end.

I checked in with a rheumatologist who knew what I had. I was lucky. It can be really difficult to get the diagnosis for so many people. Unless you have your spinal fusion on an X-ray, there isn’t much physical evidence. Even in my case, I’m not 100% merged anywhere, although I’m really close in some places.

mental challenges

In the beginning it was like “mind over matter”. You’re fine, but then again… not. Mentally it’s hard to live like this. When I think about how active I used to be – it can kind of bring you down. I’m not that old yet, I just turned 39. My pain is getting worse. Sometimes I feel like it’s all downhill from here. For example, I am a special education teacher. I used to work in an autism center that was very active. I’ve always had to have a no-lift rule. No coming down to the floor because I couldn’t get up. I had to change my work schedule and make it more of a resource worker thing. Such changes were hard. So the mental side is the hardest part of AS – just realizing my limitations.

Find the light side

In 2007 I started a support group for people living with AS on Facebook. I just wanted to be in contact with other people. I had never met anyone with it. Today it has 29,500 members. I also run a support group in St. Louis for the Spondylitis Association of America and volunteer for many other organizations like CreakyJoints. I have found plenty of health and therapy through leading support groups. I like to say that my AS has given me pride and purpose. It gave me the subject area that allows me to do so much in the community.

Research into alternative treatments

I did physical therapy for about a year and it was fine. I’ve done core strengthening and things that take the pressure off the spine, make you more flexible and stuff like that and that’s been good. I see a chiropractor on a semi-regular basis, which is a really divisive issue in the AS community. But I opted for a free consultation that came with X-rays. The chiropractor showed me that I had problems with my spine, not just AS. I started figuring out these bits. For example, my hip was always tilted. I could never lean or turn in a certain direction. So I balanced my hips with chiropractic care and it’s been a huge help. I’m even trying to run again.

Keep flare-ups at bay

AS is a lifelong condition, but there are relapses. The weather with barometric pressure changes. dairy products, sugar. They are all triggers. I’m 100% dairy free. I try to avoid excessive stress. I take an amino acid drink mix that supports circulation. It reduces inflammation and clears my head of the brain fog that comes with AS. To relax, I like to draw and I really like to write. I write for a few blog sites and it’s therapeutic. I always like to say that while many people haven’t heard of AS, it’s not really that rare. In fact, a 2012 CDC study found that 2.7 million Americans have axial spondyloarthritis, which is the umbrella classification that AS falls under. As word spreads and doctors learn what to look for, more people can be diagnosed and treated.