All products featured on Self are independently selected by our editors. However, we may receive compensation from retailers and/or from purchases of products through these links.
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 little-known 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.
Together, those things helped, but they weren’t enough, so I started taking a biologic medication every two weeks. There are different types of biologic medicines, but typically, these powerful drugs work for people with a condition like mine by blocking specific inflammatory pathways in your immune system to help control inflammation and pain.
Within roughly three months, I was feeling more like my normal self again. I wasn’t 100% better, but there was a very noticeable difference in my pain levels. It was then that I realized I’d been dealing with bad back pain for a long time. Suddenly, I was able to do the things I used to do. I could sit for extended periods of time, walk for longer distances without pain, and enjoy improved sleep. Plus, I just generally felt better throughout the day.
I still needed to make a lot of lifestyle modifications to keep my pain under control.
I took my rheumatologist's advice and started doing Pilates. I was also introduced to yoga therapy through the Spondylitis Association of America, which taught me that a regular practice, along with breathing exercises and mindfulness work, can be used to manage chronic pain. That inspired me to pursue yoga teacher training so I could bring these practices to other people with spondyloarthritis (a family of inflammatory rheumatic diseases, which includes nr-axSpA) and other types of chronic pain.
During my workouts, I started paying close attention to which types of exercises alleviated my pain and which made it worse. I tried not to sit as much and invested in ergonomic tools like a ball chair to make sitting more comfortable during my day job as a therapist. I use a heating pad a lot, too, along with hot baths or hot tub sessions whenever possible; the heat seems to help the pain.
Although some people with nr-axSpA do just fine with high-impact exercise, that’s not the case for me. So instead of running, I’ve gotten really into biking, which I’ve found usually feels okay for my back. Walking has been a little more challenging, though, despite it being a low-impact activity. I have to be aware of my limits. If I push myself too far, a slow, dull ache will emerge, and I’ll be in pain for a while afterwards. Sometimes I decide it’s worth the potential pain; other times I don’t.
Navigating these physical challenges can often feel isolating. To help, in 2021 I cofounded SpondyStrong, an online exercise program for people with inflammatory rheumatic diseases. It’s a wonderful little community of people who come together on Zoom to exercise and talk about our conditions.
Nr-axSpA isn’t keeping me from moving forward.
My chronic pain is always there on some level, but I’m lucky to have the type of personality where I don’t get too down about it. Still, nr-axSpA has definitely changed my life. I know a lot of people haven’t heard of my condition, but up to 1.4% of the global population is estimated to have some form of axial spondyloarthritis. These diseases deserve attention and resources.
Research suggests that a lot of people with these conditions go misdiagnosed or undiagnosed for years. If you’re having unexplained back pain that’s not getting better and you’ve already tried seeing physical therapists and orthopedists, you might need to consider seeing a rheumatologist.
Most importantly, if you have nr-axSpA, remember that it’s possible to overcome the challenges! After finding the right combination of lifestyle changes and treatments, most people are able to enjoy a full, active life. I should know: I’m living proof.
Related:
- What Might Be Going On If Rest Makes Your Back Pain Worse
- I’m a Personal Trainer, and These Are the Exercises That Help Me Manage My Chronic Back Pain
- The Emotional Toll of Chronic Back Pain
Get more of SELF’s great fitness coverage delivered right to your inbox—for free.
