Spondyloarthritis (SpA) is one of the conditions I have been living with for so long, though doctors do believe my condition is mixed with something else. Living with spondyloarthritis (SpA) has been an ongoing journey for me—one filled with highs, lows, and a lot of learning along the way. I understand the daily struggle of balancing life with a condition that can leave you feeling worn out, in pain, and uncertain about the future. In this blog, I want to share some insights into spondyloarthritis, how it affects daily health, and ways to navigate the unpredictability of flare-ups.

Understanding Spondyloarthritis: What It Is

Spondyloarthritis is a group of inflammatory diseases that primarily affect the spine and joints, but they can also affect other areas of the body, such as the eyes, skin, and sometimes even internal organs. The most common form is ankylosing spondylitis (AS), but there are others, such as psoriatic arthritis and reactive arthritis. In my case, I was diagnosed with AS, and it completely changed how I viewed my body and my health.

When I first started experiencing symptoms—back pain, stiffness, and even fatigue—I had no idea what was going on. I assumed it was just stress from work or maybe something I was eating. It wasn’t until the pain started to interfere with my daily life that I sought answers. Over time, I learned that these symptoms were actually warning signs of SpA.

Some of the most common symptoms I’ve faced include:

• Chronic lower back pain and stiffness—particularly in the mornings when getting out of bed.
• Joint pain in places you wouldn’t normally think about, like my heels and knees.
• Fatigue—no matter how much rest I get, the tiredness is often overwhelming.
• Eye issues—a condition called uveitis that can make my eyes feel dry, blurred vision and sensitive to light.

Diagnostic Approaches: Blood Markers and Imaging

When I was first trying to figure out what was going on with my body, it took a lot of time and persistence. The diagnostic journey for SpA is different for everyone, but I can share what worked for me.

1. Blood Tests: My rheumatologist ordered a series of blood tests, including checking for HLA-B27, a genetic marker often associated with SpA. While not everyone with SpA has this marker, its presence can provide a clue. Elevated levels of C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) helped confirm active inflammation in my body.
2. Imaging: Getting an MRI was an eye-opener. I had no idea that inflammation in my sacroiliac joints (where the spine meets the pelvis) could be seen before any damage was even visible on X-rays. It was reassuring to know that technology could pick up on what I was feeling—pain that seemed like it was just in my head at times.

What I learned throughout this process is that diagnosing spondyloarthritis requires a full picture: blood tests, imaging, and a lot of listening to your body. It can be frustrating when you don’t have a clear diagnosis, but keep pushing for answers.

The Unpredictability of Flare-Ups

For me, one of the most frustrating parts of living with spondyloarthritis is the unpredictability of flare-ups. I could feel completely fine one day and then wake up the next with excruciating pain or stiffness. These flare-ups can come out of nowhere and derail your plans for the day.

Some common triggers for my flare-ups include:

• Stress—whether it’s work-related or personal.
• Changes in weather—I’ve noticed that cold, damp conditions seem to make my symptoms worse.
• Overexertion—trying to push through a busy week or doing too much physically can lead to days of pain.

I’ve learned that the best way to handle flare-ups is to accept them, even though that’s easier said than done. Sometimes, the best thing I can do is acknowledge that I’m in a flare, let myself rest, and avoid pushing my body beyond its limits.

Managing Everyday Life with Spondyloarthritis

It’s not always easy, but I’ve learned to live with spondyloarthritis by making adjustments to my daily life. Here’s what works for me:

1. Exercise and Physical Therapy: At first, exercise felt like the last thing I wanted to do. But I quickly realized that staying active, even with low-impact activities like walking, swimming, or yoga, helps me maintain flexibility and reduce pain. I also see a physical therapist regularly who teaches me exercises tailored to my needs. A few minutes of stretching each day goes a long way.
2. Ergonomics: I’ve had to adapt my workspace—ensuring that my chair and desk are set up to support my posture. Little changes, like taking breaks every 30 minutes to stretch, have helped me reduce the strain on my back and joints. For example, when I’m sitting for long periods, I try to adjust my position frequently or use a cushion for extra support.
3. Pacing and Rest: I used to try to power through everything, but I’ve learned that pacing is key. Listening to my body, resting when needed, and taking naps when the fatigue hits have been game-changers. For me, a 10-minute break in the middle of the day can reset my energy levels and help me avoid overdoing it.
4. Diet and Lifestyle: I’ve been more mindful of my diet, focusing on anti-inflammatory foods like leafy greens and less gluten. I have reduced processed foods and sugar has also helped me feel more energized and less inflamed. I also found that staying hydrated is surprisingly important—it’s a small change that can make a big difference in how my body feels.
5. Stress Management: Since stress is a major trigger for flare-ups, I’ve incorporated stress-management techniques into my routine. This includes mindfulness, meditation, and even journaling to clear my head. I also try to prioritize my mental health by setting aside time to do things that bring me joy and relaxation.

Advocating for the Right Treatment

When I was first diagnosed, it felt overwhelming to decide on the right treatment plan. There’s no one-size-fits-all approach to spondyloarthritis, and that can be daunting. I quickly learned that advocacy is a big part of managing my health.

I’ve had to be open with my doctor about how my treatments are affecting me and push for new options when necessary. Biologics, which target the root cause of inflammation, have been a game-changer for me. But finding the right medication took time. Don’t be afraid to speak up, ask questions, and even seek a second opinion if you feel something isn’t working for you.

Conclusion

Living with spondyloarthritis is a constant balancing act, but it’s one that I’m learning to navigate. It’s not easy, but it is possible. Through trial and error, I’ve found ways to manage flare-ups, stay active, and take care of my body. Most importantly, I’ve learned that it’s essential to advocate for myself—to be informed, to communicate with my doctors, and to accept that some days will be harder than others.

If you’re living with SpA, or any chronic condition for that matter, know that you’re not alone. We all have our struggles, but there is support out there. Keep pushing forward, take care of yourself, and don’t be afraid to ask for help when you need it. Every small step toward better management of your health counts.