Hey there, I’m so glad you found this post. If you’re here because you’ve just received an ankylosing spondylitis diagnosis (often called AS) or you’re searching for answers about your symptoms, I want to say this first:
You’re not alone.
I know how scary it is to be in your shoes, trying to make sense of your body, a diagnosis you’ve maybe never heard of (I hadn’t), and a future that suddenly feels uncertain. I’m a parent of four kiddos and I am living with AS, and this is the kind of blog post I wish I’d stumbled across when I was first trying to make sense of it all.
I was officially diagnosed with ankylosing spondylitis shortly after our first child was born, although I had experienced symptoms for nearly a decade beforehand. I remember sitting alone in the rheumatology department at the hospital, having navigated long, winding corridors and multiple confusing elevator banks with a hungry newborn in tow. My scan results waited for me in a stack of red folders outside the exam room. Part fear and part wishful thinking, I convinced myself that all I would hear that day was that I had bad sciatica and a weak back. At that point, I had already been living with high levels of chronic pain for years, and my pregnancy had been nothing short of crippling. You can read more about the day I was diagnosed here (coming soon), but when I finally heard the words “ankylosing spondylitis,” it felt like the ground gave way beneath my feet.
Quick Disclaimer Before We Dive In
I’m not a medical professional, just someone walking this same path. What I share here is based on my personal experience and research. It’s not medical advice, and while I try to be accurate, the info here might not reflect the latest clinical guidance. Please speak to your healthcare provider about any decisions you make regarding your care.
Ankylosing Spondylitis Diagnosis: What It Is (and Why It’s Also Called AxSpA)
An ankylosing spondylitis diagnosis can be life-changing, but understanding what’s happening in your body makes it easier to manage. Ankylosing spondylitis is a form of inflammatory arthritis that primarily affects the spine and sacroiliac joints (where your spine connects to your pelvis). Over time, this inflammation can cause the bones to fuse together, reducing flexibility and causing chronic pain. Some people also experience inflammation in other parts of their body like the eyes, hips, ribs, heels, shoulders, and even the jaw. My symptoms and pain have shifted over the years and you can read more about that here (coming soon).
You may also hear it called Axial Spondyloarthritis (AxSpA), which is the more current umbrella term. AxSpa is a broad term encompassing a group of inflammatory diseases that primarily affect the spine and sacroiliac joints.
It includes both:
•. Non-radiographic AxSpA, where joint damage doesn’t show up on X-rays yet, and
•. Ankylosing spondylitis (AS), where there is visible damage on imaging (this was my case)
So yes, it’s confusing. Many of us still refer to it as AS because that’s what we were originally told, and it’s more recognizable to the general public. But if you’re researching or joining support groups, you’ll probably see both terms used.
Early Signs That May Lead to an Ankylosing Spondylitis Diagnosis
AS doesn’t show up overnight. For many of us, it creeps in slowly and silently, often in our teens, 20s, or 30s, though diagnosis sometimes comes much later as it did for me. I had symptoms for a decade prior. For many people, the road to an ankylosing spondylitis diagnosis is long and frustrating, with symptoms dismissed as simple back strain or stress. Some early symptoms to watch for include:
•. Chronic lower back pain (especially at night or in the morning)
•. Stiffness that improves with movement (*See note below)
•. Hip pain or aching in the buttocks
•. Fatigue that feels bone-deep
•. Pain in the ribs, shoulders, or heels
• Occasional eye inflammation (iritis or uveitis)
One big clue is that this type of pain often improves with gentle activity and worsens with rest, the opposite of typical muscle strain or injury. (*See note below)
*Note: In my personal experience with ankylosing spondylitis (AS), this symptom was confusing. My stiffness often improved as the day went on and as I moved around, but in the mornings, movement was nearly impossible, the pain was unbearable. For me, stiffness and pain are at their worst from about 2 a.m. until noon. I can’t get up and moving right away because I need heat therapy and time sitting to ease the pain and loosen the death grip that the stiffness has on my spine. While movement is critical for improving stiffness, my mornings require rest and heat first. Everyone’s experience with AS is different, so you’ll discover what works best for you. It will take time, so be patient with yourself and try not to get discouraged.
Ankylosing Spondylitis Diagnosis Basics: What It Is and Why It’s Also Called AxSpA
HLA-B27 Testing in the Ankylosing Spondylitis Diagnosis Process
You might have heard of the HLA-B27 gene, a genetic marker linked to a higher risk of developing AS. If you’re still waiting for an official ankylosing spondylitis diagnosis, you may hear about the HLA-B27 gene test. Some doctors recommend testing for it during the diagnostic process, but it’s not required.
I personally was not tested for HLA-B27, and here’s why: not everyone with AS has the gene, and not everyone with the gene develops AS. It can be a helpful piece of the puzzle, especially if you’re struggling to get a diagnosis, but it’s not definitive.
Note: In the future, I may choose to get tested so we can have a medical record for our kids. This way, when they’re adults, they can decide for themselves if they want to be tested. I know this can be an emotionally charged topic within support groups. For our family, this has been the choice that feels right—but it’s completely valid and understandable if you choose a different path. It’s a deeply personal decision that should be made with careful consideration alongside your doctor. I try hard to respect and support everyone’s journey, especially when it comes to parenting. We’re all doing our absolute best to raise our little humans, and there’s no need for extra shame or guilt around this genetic topic. I support you 🤍
If you’re considering testing, it’s worth discussing the pros and cons with your doctor. But don’t feel discouraged if you’re HLA-B27 negative. AS is still a real and valid diagnosis based on symptoms, imaging, and medical history.
Managing Life With AS: You’re Stronger Than You Think
Getting diagnosed with AS can feel like someone pressed pause on your life. I remember feeling very overwhelmed and not just by the pain, but by the fear of what it meant for my role as a parent, partner, and friend. Read more about my diagnosis here (coming soon).
But here’s the good news: there is hope. While there’s no cure (yet), there are so many ways to manage this disease and take back your life. I’m learning new ways to cope as my condition progresses, and by sharing my journey, I hope you feel supported and understood here. 🤍
A few things that have helped me personally:
•. Daily gentle movement — yoga, tai chi, and even water-based exercises help reduce stiffness and improve flexibility. I love Yoga By Adriene and she has yoga for chronic pain here.
•. Pain relief tools — Things like a good heating pad, soft ice packs and Lakota Pain Roll-On can help support you through tough moments in your day when the pain is higher. Here are my favorites and they are available on Amazon.ca and Amazon.com (Lakota, Ice Pack, Heat)
•. Mobility aids that make life easier, like the M Bar (a bedside handle for turning over) and Sock Butler for putting on socks without bending. (Amazon.ca: M-Bar, Sock Butler) (Amazon.com: M-Bar, Sock Butler)
•. Keeping a health journal to track flares, food triggers, and pain patterns.
•. Talking to others who get it. Joining support groups was a turning point for me. (See below for my top picks.)
You’re Not Alone: Support for Newly Diagnosed (U.S. & Canada)
Whether you’re in the U.S., Canada or further abroad, there are some great starting points for trustworthy support:
🇨🇦 Canadian Resources
•. Spondylitis Association of Canada (SAC)
•. Canadian Arthritis Patient Alliance
•. Cassie + Friends (for parents of kids with arthritis, but helpful info for families)
🇺🇸 U.S. Resources
•. Spondylitis Association of America (SAA) — includes tools, forums, and a doctor directory
•. CreakyJoints — great articles, support, and a patient app
•. Arthritis Foundation
Final Thoughts: You Are More Than This Diagnosis
You are not broken. You are not lazy. And you’re not alone.
Living with AS means some days are harder than others, but it doesn’t mean life is over. It just means we adapt and in the process, we discover strength we didn’t know we had.
You’ve got this, one gentle step at a time.
Sending warmth and strength, hugs xo
P.S. If you want tips on managing pain naturally or finding helpful tools and gadgets, I’ve written separate posts you might find helpful:
•. Tips for Managing Pain
•. Must-Have Products for Living with AS
Coming Up Next…
In this series for the newly diagnosed, we’ll dive into: (series coming soon!)
•. How to talk to your doctor (and what questions to ask)
•. Building a support system
•. Parenting with chronic pain
•. Finding movement that feels good
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