Hi my name is Peter and I live in the Australian Capital Territory.
I was diagnosed with AS at 34. There is no history of AS or Spondyloarthritis in my family. My mother has Rheumatoid Arthritis. I have had back pain since my teens.
The first time I saw a doctor for lower back pain was when I was 13 and had started cross-country running through my school. I remember from an early age feeling uncomfortable about exercising. I would always come in near last when I ran, and waaaay over time. By that time the sports teacher would have already have left for another class.
My pain remained variable during my teens. I saw several doctors and several back specialists, thanks to my mum. They all thought I was suffering from a form of nerve impingement in the lumbar spine. I remember it like someone banging nail into my hip. I would bump my hip into the kitchen bench to make it go away for a split second.
My mother was not sure how to deal with her son’s symptoms given they were so variable. One day I was unable to walk properly and off to doctors, then two days later, totally fine. She wasn’t sure I was not exaggerating. One day, she saw me in the city from far away, and I was limping. She said at this moment she knew I was in real pain.
The next episode I remember was at university. I was a first year law student studying for my contracts exam. I had several four-hour exams in the preceding days. My chest started hurting with bright stabbing pains. My father took me to the hospital. I ended up with a possible diagnosis of “pleurisy” although no cause was found. Subsequently I developed increasing symptoms of the upper spine, cervical spine and intermittently lower back which was episodic in nature and quite debilitating.
I saw numerous physiotherapist, osteopaths and chiropractors. None of them could diagnose what I had. I spent tens of thousands of dollars seeking symptomatic relief. I remember once, after diagnosis, encountering one osteopath I had donated a small fortune to and telling him that after I finished seeing him I’d been diagnosed with AS, and he said “Oh, I have several patients with that, and they find that I can help them quite a bit with it”. I could have punched him.
In my late 20s and early 30s I became increasingly concerned about my posture which I thought was related to my desk job. I thought I had something called “forward head posture”. I am vain – so I was trying my best to rectify it. This is not such a bad thing because the exercises are similar to the ones given out to people with AS. However this led me to see an experienced sports and pain specialist in Canberra. He was the first doctor to suspect that I had an autoimmune condition. He took the time to listen to my story in detail. Because he was not a rheumatologist he simply called it ‘spine stiffness’ and went through some range of motion exercises. He ordered the HLA-B 27 test and made a referral to a rheumatologist. I remember leaving his office after the final visit, and being surprised that going to shake his hand, he instead gave me the unthinkable – a hug.
By the time the HLA-B 27 test arrived positive I had found out through the Internet that I probably had this thing called ‘ankylosing spondylitis’. It took me a long time to be able to write those long words off the top of my head.
It turned out I had last stage SI fusion, and an incredible amount of lack of motion in my lower lumbar spine. My upper back had almost fused. So in the space of 12 months I had gone to thinking I had a reversible postural abnormality to realising I had a significant amount of damage with ongoing degeneration. That was like being hit over the head with a guitar.
I found it hard to accept. On and off I have suffered for some time with occasionally periods of being extremely disconsolate/depressed. I have been extremely grateful for the support of my wife (who was then my girlfriend ). My posture continues to deteriorate, and my mental health is up and down. I am generally a very happy person.
I’m very grateful to access biologic treatment (first Enbrel, then Humira). I try and make it a point to the gym twice a week, even if I go there and cannot do anything. I try and go on at least one long walk every week. I have found that NSAIDs give me stomach cramping and nausea.
I have three messages for new people who have been diagnosed with AS
1. 1. Every day we are given 24 hours. This I learned from someone else with AS. It’s the most important point, so it’s first: “One day at a time”.
2. Take charge and plan ahead. You are probably the most important person in determining what treatment you receive and what you do with it. Don’t wait til you are at the specialist’s office to come up with your questions. Even if you have the best rheumatologist, you may still need to do extensive research to get the best care.
3. 3. Attitude and gratitude. We can’t control much. This is one string we can play.
Australian Capital Territory, Australia