More Than Just Back Pain: The AxSpa Symptoms No One Warned You About

Living with axial spondyloarthritis (AxSpa) means navigating a chronic condition characterized primarily by inflammation in the spine and sacroiliac (SI) joints. However, as many individuals in the AxSpa community discover, the disease is rarely confined to the core areas commonly described in clinical literature. For those on a journey of diagnosis or struggling to connect seemingly unrelated symptoms, validation can be a powerful source of relief.

We recently looked into a forum discussion where community members shared the AxSpa symptoms that surprised them the most, revealing a landscape of pain and discomfort that often stretches far beyond the back.

The overwhelming message? If you’re experiencing unusual aches or sensory issues, you are not alone, and they may indeed be connected to your AxSpa.

Beyond the core: unexpected pain locations

While intense back pain is the hallmark of AxSpa, many members expressed shock at where else the inflammation decided to set up shop. This is often due to enthesitis, the inflammation where tendons or ligaments attach to bone.

One of the more alarming, though surprisingly common, discoveries was pain in the chest and ribs. As one forum member shared, their biggest surprise was the "rib pain on both sides," a symptom that can sometimes be mistaken for other serious issues.

Even more peripheral joints are often affected. One individual reported debilitating "pain in [their] collar bone," stating, "Sometimes it's off the chart." This highlights how AxSpa can cause significant pain in areas far removed from the lower spine.

Similarly, another member described the intense, compressive joint discomfort in their lower body, noting they had "hips that feel like they are in a vase." These comments underscore the systemic nature of the disease and the need for patients and physicians to consider enthesitis in any painful area.

Sensory surprises: eyes, neck, and swallowing issues

One of the most frequently mentioned "surprises" revolved around ocular inflammation and issues related to the head and neck. While uveitis (eye inflammation) is a known complication of AxSpa, many individuals were unprepared for the milder, yet persistent, eye symptoms.

As several individuals mentioned, light sensitivity and chronic dry eyes were persistent issues. One commenter stated, "The eye irritation was what surprised me. I'm very sensitive to light and have dry eyes so my eyes tear in the morning."

For some, this sensitivity was severe, leading one individual to declare, "My eyes are now so sensitive that I have to wear my Wayfarer sunglasses." Beyond light and dryness, one individual also experienced focus issues while driving or looking for things on a shelf, pointing to visual disturbances beyond classic uveitis.

Furthermore, symptoms affecting the throat and neck were unexpectedly reported. One community member mentioned a condition that caused chest pain and problems swallowing, noting that it "felt like [they] had a chip stuck in [their] throat." Others mentioned unusual joint mechanics, such as a "neck that started popping in every direction;" a sign of the inflammatory process affecting upper spinal stability and function.

Practical strategies for navigating the unexpected

The community discussion provided not only validation but also practical, empathetic advice for coping with these lesser-known aspects of AxSpa.

Prioritizing movement

Despite the crippling pain, one clear piece of advice derived from the conversation was the importance of maintaining an exercise routine. One participant noted they were still able to work out and maintain their mobility, even wondering whether they could attempt gymnastics during a current flare. This reinforces the common medical recommendation that movement, tailored to one's ability, is critical for maintaining function and reducing stiffness.

Communication and treatment check-ins

The forum also served as a reminder of the complex relationship between treatment and side effects. One member shared their experience with cataracts, which they confirmed were a direct result of taking Prednisone for an extended period. This highlights the critical need for continuous, open communication with your rheumatologist and specialists about all medications and side effects.

Finding community

Finally, the most powerful advice was simply the shared sense of community and validation. As one community member noted in response to another sharing about their symptoms, "A large number in this community would agree with you." This collective reassurance is vital: recognizing that unusual symptoms are part of the AxSpa spectrum can alleviate the stress of feeling isolated or that your symptoms are being dismissed.

The bottom line

AxSpa is a complex, whole-body disease. By sharing these surprising and lesser-known symptoms, community members provide valuable insights, empowering others to ask the right questions, seek appropriate care, and remember that their experiences, however unusual, are valid.