Finding My Culprit, Nr-AxSpA

I’ve had pain since I was about nine years old. Around that age, I started experiencing episodes where my whole spine and ribs would seize up – any small movement I made would cause extreme pain. My lower back hurt intermittently, too. My mother would often take me to the chiropractor; we thought I had hurt my back playing sports. About once a year I would have a flare up, be bedridden for a couple of days, and occasionally be vomiting from back pain. At that age, my parents just thought I had a recurring stomach bug.

From age 14 to 17 my symptoms seemed to ease quite a bit. I would still have pain occasionally, but not as bad as when I was younger. But at 17 my symptoms got worse again. I’m now 23 and have finally found my culprit.

In late 2018, I had my wisdom teeth removed due to jaw pain and infection, but I was still having jaw pain weeks after the operation (and still to this day). Four weeks later I was in the hospital with sepsis. Once this issue resolved I asked the doctor again why I was still having jaw pain. There was no answer.

In 2019, I started an office job. But I only lasted about three months before I had to quit, due to a flare up and how much pain it was causing me to sit in the same position every day. I ended up in the hospital with lower back pain and pain under my right hip. The doctors decided to remove my appendix. I woke up from the operation in a lot of pain. I looked at the time and realized the operation went on much longer than it was meant to. The next morning, doctors from the gynecology team came into my room and told me I had stage IV endometriosis and a tumor on my right ovary. When I asked if they knew what was causing my back pain, they didn’t have an answer. Six weeks later I had a second surgery to remove the tumor.

Between age nine and the present, I have been admitted to the hospital 12 times with some sort of infection and a sore lower back. This past June, I went in with a fever and extreme lower back pain. I was admitted for seven days and given IV antibiotics and morphine. The day I was due for discharge, a new doctor I hadn’t seen yet came into my room and asked if he could examine me. He pushed on my SI joints and right away I yelled, “Ouch!” He said to me, “I think you could have a type of inflammatory arthritis. I think you should see a rheumatologist.” At this point, I had no idea what a rheumatologist was, but I was hopeful that maybe I might finally get an answer.

Over the next few months, my symptoms got significantly worse. I developed stiffness, which I had never experienced before, and consistent pain in my SI joints. I saw the rheumatologist in August and after some scans and blood tests, he diagnosed me with non-radiographic axial spondyloarthritis (nr-axSpA).

The first two weeks after getting diagnosed were an emotional roller coaster. I was happy to finally have answers but also shocked and upset by the diagnosis.

When I first learned about nr-axSpA, I was terrified by the idea that I might end up in a wheelchair. I remember thinking to myself, “How am I meant to live the rest of my life in this much pain?” But my rheumatologist told me that once I find medication that works for me, I should have less severe symptoms. That was a massive relief. I felt like my life wasn’t over after all.

I’ve managed my pain for years by exercising, and I think this has helped me stay active and reasonably flexible. I have found stress to be a major contributing factor to my pain; the more stressed I am, the more pain I’m in, generally. I spend as much time as I can doing things that reduce my stress level, like exercising. These days I opt for laps in the pool for exercise. Since my major flare up last June, I am having to re-learn my body and its limits and what I can and can’t do. I also make a point to do things I find enjoyable, like hanging out with friends and family.

I’ve also made some big diet changes which seem to be helping my disease activity, endometriosis, and bowel symptoms. I’ve opted to follow a Mediterranean diet, and within a matter of days after starting the diet, I began seeing improvements. My energy level has increased, many of my bowel symptoms have disappeared, and I’m experiencing less spine and joint pain.

Finally, I’m on a medication that has helped me for the past few months. Since starting upadacitinib (Rinvoq, a JAK inhibitor currently only approved for psoriatic arthritis in the U.S.), I’ve noticed improvements in joint stiffness and back pain.

I’m really grateful that I was able to get diagnosed young and avoid years of suffering, disease progression, and damage without knowing the cause. I know many people are not as lucky.

Socially, I have found it difficult being diagnosed with a chronic, lifelong disease at this age. Everyone I talk to about it has never heard of nr-axSpA, so I frequently find myself trying to explain it to people. I often get comments like, “But you’re so young – how can you have arthritis?” I think because this illness is relatively unheard-of (at least in Australia, where I live), it makes things more difficult for those who live with it. Few people understand how painful and serious this illness is.

As of now, I feel like I’m on the right path – learning what causes me pain and discomfort, and what prevents pain and discomfort. I’m looking forward to improving my symptoms even more. I won’t let this disease hold me back from what I want to do!