12 Things I’ve Learned About Ankylosing Spondylitis (and Axial Spondyloarthritis)

While math and I are typically not friends, I’m going to throw some numbers at you:

• 4 years
• 4 providers
• 3 physical therapists
• 3 MRIs
• 2 referrals
• 1 hip x-ray
• 3 specific lab tests
• 1,272 gray hairs

That is what it took to finally get answers and treatment for progressing lower back stiffness and pain that plagued me for nearly five years. I don’t think I slept through the night without cringing or gasping in pain in 2025. Simply standing still in a grocery line for even 90 seconds would make my lower spine feel as though it were encased in cement. Wiggling around like a toddler who had to pee was the only way to loosen the painful stiffness. Like my other autoimmune diseases, Sjogren’s and myasthenia gravis, I figured out my diagnosis before the trained professionals.

I’m now officially diagnosed with non-radiographic axial spondyloarthritis (nr-axSpA). So, for those following in my footsteps, here are twelve critical things I learned about this autoimmune disease.

1. The hallmark symptom is pain and stiffness at rest.

With inflammatory back pain, mornings hurt. Nights hurt. Long car rides hurt.
Movement often helps. Rest makes it worse. That’s the opposite of most “mechanical” back problems. My stiffness can be so severe at night that I’m immobilized, but tiny movements that morph into bigger movements can bring me relief.

2. Ankylosing spondylitis is part of a larger “spondyloarthritis” family.

Goodness, the names. Hard to say and even more difficult to spell. It can be confusing, but here’s how I understand it. Spondyloarthritis (SpA) is the umbrella term for inflammatory arthritis conditions that tend to affect the spine, sacroiliac joints, and places where tendons attach to bone (entheses). It also has common links with eye, gut, and skin problems.

Within that family is a spine-focused branch called axial spondyloarthritis (axSpA). Inflammation primarily attacks the spine and SI joints.

And within axial spondyloarthritis are two related forms (stick with me here):

• Radiographic axSpA – this is what most people mean when they say ankylosing spondylitis (AS). Damage shows up on their X-rays.
• Non-radiographic axSpA (nr-axSpA) – symptoms and inflammation are very much real, and MRI may show it, but X-rays don’t show structural damage (at least not yet).

They’re not separate diseases per se. They’re points along the same spectrum. People with nr-axSpA can be just as symptomatic as those with AS, and both deserve the same level of attention and care.

3. HLA-B27 negative? It still may be axSpA.

Just like you can have Sjogren’s disease without the SSA antibody, you don’t have to be HLA-B27 positive to have axSpA. Although, unlike antibody, HLA-B27 is a genetic marker. Plenty of people with axSpA are negative.
A negative test does not rule it out. This can greatly delay diagnosis—I would know.

4. X-rays can lag behind symptoms by years.

Structural changes (the stuff X-rays pick up) develop slowly. Historically, many patients don’t show X-ray damage until 7–10+ years into symptoms. So “normal X-ray” doesn’t mean your symptoms don’t exist, and axSpA is ruled out.

5. Even an MRI can be normal at first.

MRI sees inflammation earlier, but it isn’t a crystal ball. Inflammation can be intermittent. Radiologists may interpret it differently. My first SI joint MRI had a perfectly normal report, which I didn’t believe for one minute. So, I got a second opinion with a musculoskeletal radiologist and BAM! That radiologist found “irregularity of the right sacroiliac joint space anteriorly with adjacent mild bone marrow edema in the ilium.”

Some people go months to years before MRI finally “catches” the changes. This is why the full clinical picture is so important.

6. Not every rheumatologist is deeply trained in axSpA.

This condition is under-recognized, especially in women and HLA-B27 patients. I love my rheumatologist for Sjogren’s, but when he said I couldn’t have axSpa with the genetic marker, I started looking for a rheumatologist known for diagnosing and treating axial spondyloarthritis. I have gotten good at vetting providers and finding the one who hears and sees you, but is also knowledgeable about your specific condition. I call them unicorns.

Learn how to find your “unicorn” provider in my book How to Be a Badass in a Broken Healthcare System. Available on Amazon and Barnes & Noble online.

7. Normal labs don’t rule out axSpA.

CRP and ESR are markers of inflammation. Many axSpA patients stay “normal” on paper. I called myself the Queen of Normal labs. My body is like a dang vault – releasing no secrets. Despite crippling pain, my ESR and CRP are always normal.

8. Women may present differently (and are often dismissed).

Women are more likely to have:

• Less dramatic X-ray changes
• Women are less likely to test positive for HLA-B27 compared with male patients. HLA-B27 carriers are more likely to show inflammation on MRI, so being HLA-B27 negative can contribute to normal or subtle imaging early on.
• More widespread pain
• Fatigue, neck/hip involvement, enthesitis (where tendons attach to bone)

Because of this, women are more likely to be misdiagnosed with fibromyalgia, stress, aging or other non-inflammatory conditions.

9. It’s not “just a back disease.”

I have learned the hard way that AxSpA can involve:

• Hips and SI joints (mine is usually a deep, aching pain and pressure)
• Rib cage (making deep breathing or wearing a bra painful)
• Tendon insertion that can inflame the attachment points where tendons meet bone, which causes sharp, localized pain, tenderness, or stiffness. (I have this in the form of chronic plantar fasciitis)
• Eyes in the form of uveitis
• Gut issues (IBD connections)
• Skin (psoriasis)

These connections are important! They can serve as puzzle pieces in confirming a diagnosis.

10. Stiffness doesn’t mean you should rest.

Movement is medicine. Gentle stretching, walking, swimming, and physical therapy are often crucial. Too much immobilization can make symptoms worse. My biggest frustration is the fatigue that accompanies this disease. If I spend a day resting in a horizontal position, the pain increases. If I do low-impact exercise every day, I feel like it helps dial back my pain and stiffness. But finding that balance has been tricky.

11. NSAIDs can be surprisingly effective.

For some people, anti-inflammatory meds dramatically improve pain and function. I’m thrilled to say that I am one of those people. That positive response can also be a diagnostic clue.

12. Fusion isn’t inevitable

Apparently, there was this old narrative of, “You’ll eventually fuse.” Modern treatment, especially biologics, has changed the game. Many patients never reach that stage. Progression risk varies by individual factors (baseline damage, smoking, disease activity), but newer data contradict the old idea that nearly everyone with AS inevitably ends up with a bamboo spine.

Being newly diagnosed, I still have a lot to learn. Feel free to drop a comment if you have or suspect axSpA and what you’ve learned about the disease.