Sandra Voss spent a year trying to understand why she was experiencing bad back pain. After receiving a series of misdiagnoses, she finally learned she had a rare inflammatory disease called non-radiographic axial spondyloarthritis (nr-axSpA). Now the 38-year-old leads fitness classes for people with her disease and related conditions. This is her story.
I was training for a half-marathon in 2014 when I realized something was off with my health. I woke up one day with a terrible pain in my left sacroiliac (SI) joint, which is where the spine connects to the pelvis. I assumed it was a running-related injury, so I tried taking a break from training. But rest didn’t make the pain go away.
Over the next few weeks, the pain spread across my entire lower back, and I started having sharp, shooting pain that made it uncomfortable to walk. So I went to an orthopedist to get checked out. My doctor thought it was sciatica—pain that travels along the sciatic nerve, which starts at the lower back and goes down each leg, and suggested I try physical therapy. But unfortunately, it didn’t really help.
My physical therapist recommended that I take another break from running, but that didn’t alleviate pain either. At that point, I constantly had a low, dull aching pain in my lower back. It worsened while I was resting or sitting but improved with exercise. Nearly a year later, I traveled to Germany, and some of my pictures from the trip show me lying on the floor because sitting was so uncomfortable. The pain wasn’t absolutely debilitating; I could still walk around and do things. But I was feeling pretty miserable.
When I got home, I went back to the orthopedist, who did some X-rays. The images showed nothing unusual. My doctor finally recommended that I see a rheumatologist in the hopes that they’d have better luck figuring out what was going on. I didn’t have good health insurance, so I ended up seeing two rheumatologists who weren’t board-certified. It wasn’t until I saw a third rheumatologist (who was board-certified) that I got an MRI and was told I might have non-radiographic axial spondyloarthritis (nr-axSpA). This was a year after I started experiencing pain.
It took a little time to find the right treatment plan.
As I learned, nr-axSpA is a type of arthritis that usually causes pain and swelling in the spine, as well as in the joints that connect the bottom of the spine to the pelvis. It causes joint damage that isn’t visible on X-rays but can show up in MRI scans, which is why nothing appeared in my initial imaging.
I had a mixed reaction to my diagnosis. It was a bit of a relief to know what was going on and learn that there were treatments available. But it was also scary to realize I had a lifelong chronic condition. It was difficult news to process.
My rheumatologist started me on a fairly conservative treatment plan. For the pain, I took over-the-counter and prescription nonsteroidal anti-inflammatory drugs (NSAIDs). She also suggested I do Pilates to improve my core strength, explaining that this would help stabilize my spine and take some of the load off my joints, which could potentially lessen the pain I was experiencing.
