Adolescent AS for me

Hi, I'm a 69yo retired healthcare worker in Radiology. I was an active child in grade school. I started playing little league football around 3rd grade. We did a lot of running at practice, and with all the drills, I kept feeling like what I described as feeling like I was carrying a heavy backpack that was making my lower back hurt.

Not really knowing anything about the body at that time, I really couldn't tell where it was coming from.

Trying to stay active as a kid

I really liked playing football and dreamed of playing high school ball. I began to notice I was becoming slower at running laps and sprints. I didn't want to look weak around friends, so I would push myself to do what everyone else was doing. I complained about it, and when I was in junior high I went to the doctor and was told I had a muscle strain and was given a muscle relaxer which did nothing for pain.

I was also told that I wasn't exercising enough, which I didn't understand at all. At the same time, I was having difficulty with breathing when I exerted myself with running. I ended up not playing sports because I didn't know how it might end up, sitting on the bench and watching the games.

A journey to AS diagnosis

After starting X-Ray school I began to have excruciating pain in my lower back and what I thought was hip pain. I had X-rays done of my hips and it was all negative. That was around 1975. It wasn't until around 1983 that a young Radiologist I talked to told me to get an image of my lumbar spine including the SI joints.

When I showed it to him, he knew what it was, and other doctors were coming by to speak with him about their patients as he was looking at my images. Some of them saw it and were surprised to see it.

Even today, a lot of doctors haven't really seen someone with this disease. I wasn't actually diagnosed on the record until 1987-88.

Managing my AS over the years

I've been to a lot of Rheumatologists for help. NSAIDs have really bothered my stomach and GI tract, although Celebrex is one medication I cannot do without. When I had an MRI in the early 90s, the AS was obvious and pretty aggressive. I did end up having a total rt hip replacement in 2008, and then in 2014 had to have a L5-S1 fusion on my lumbar spine.

What would I tell young people living with AS?

In my 20s, I did what everyone else was doing as young adults. Riding horses, dirt bikes, offroad riding on rough mining roads in the mountains. All of which aren't recommended for this disease.

Partying and self medication was how I tried to deal with it. At one point, I couldn't sleep lying flat in bed, so for 5 years I slept in a recliner sitting up. I also gained weight from partying the pain away. I lost 100 lbs by walking and eventually jogging. I felt a little better, but still had pain. It never goes away.

There's more issues I have had with AS, but my best advice for young people with AS is to stay as active as possible. I know it's tough, but moving around does help some. It takes a lot of will power and perseverance to keep the activity up, but it will help in the long run. I have been told my being active helped keep me from being worse than I am right now.