How to get your GP to take your back pain seriously

The most common path to an AS diagnosis does not go: symptom onset → GP appointment → rheumatology referral → diagnosis. The most common path goes: symptom onset → years of being dismissed → eventually getting to the right doctor somehow.

That gap is where this guide lives. Not because the system is fair or should work this way, but because understanding how to navigate it matters when you are in pain and not being heard.

Understand what makes your pain different

The first thing that helps: being able to describe your pain in terms that are medically relevant for AS, not just general pain language.

Inflammatory back pain — the kind that characterises AS — has specific features that distinguish it from mechanical back pain (the kind from strain, injury, or disc problems). These features are actually diagnostic criteria. Knowing them lets you describe your pain in terms that trigger the right associations.

The inflammatory pattern: pain that is worse at night and first thing in the morning. Pain that improves with movement but does not go away entirely with rest. Morning stiffness lasting more than 30-45 minutes. Onset before age 45. Insidious (gradual) onset rather than after a specific injury. NSAIDs work noticeably better for it than paracetamol.

When you describe pain to your doctor, use these terms: 'worse at night,' 'better when I move around,' 'stiff for at least an hour in the morning,' 'started gradually, not from an injury.' These are not just descriptions — they are clinical flags.

The specific things to ask for

Two tests break the diagnostic logjam more than anything else:

HLA-B27 blood test. This tests for the gene associated with AS (carried by about 90% of AS patients). It is a simple blood test. It is not diagnostic on its own — you can have HLA-B27 without AS, and you can have AS without HLA-B27 — but a positive result combined with the inflammatory pain pattern is a strong indicator that rheumatology investigation is warranted. Ask for it by name.

MRI of your sacroiliac joints. Not X-ray — MRI. X-rays can look normal for the first 7-10 years of AS because structural damage takes time to develop. MRI can detect inflammation before structural damage occurs. Specifically request an MRI of the sacroiliac joints, which is where AS inflammation typically begins.

Ask for rheumatology referral. Not orthopaedics. Not pain clinic. Rheumatology is where AS gets diagnosed and treated. Orthopaedic surgeons deal with structural problems. Pain clinics manage symptoms. Neither is equipped to diagnose or treat inflammatory arthritis.

Keep a symptom diary

Before your next GP appointment, spend two weeks keeping a brief daily record: time of day when pain is worst, how long morning stiffness lasts, what helped or made it worse, what other symptoms you had.

This does two things. First, it gives you specific, credible information rather than general 'I'm in a lot of pain.' Second, it reveals the inflammatory pattern — the consistent morning worst, the improvement with movement, the night waking — in a way that is harder to dismiss than verbal descriptions.

You do not need a fancy app. A notes app on your phone, a brief entry each morning, is enough.

What to do if you are dismissed

If your GP says your X-ray is normal and you are fine, and you believe the inflammatory back pain pattern applies to you: you are entitled to a second opinion. You can ask to see a different GP in the same practice. You can register with a different practice. You can request a private rheumatology consultation if the financial barrier is manageable.

A private rheumatology consultation (typically $200-500 in most countries) can result in a diagnosis in weeks that a public referral might take years to reach. Some people transfer back to the public system for ongoing management once they have a diagnosis.

Keep records. Dates of appointments, what was said, what tests were ordered, results received. If you need to make a complaint or appeal a referral decision, documentation is what makes it possible.

How to strengthen a referral

In gatekeeping systems (UK NHS, Australia Medicare, NZ public health), the referral letter your GP writes determines whether you are seen quickly and by the right person. You can influence what goes in it.

Before the appointment where you expect a referral, prepare a list of your most significant inflammatory symptoms (using the language above), any family history of AS, psoriasis, IBD, or uveitis, any history of uveitis yourself, and your HLA-B27 result if you have one.

Ask that these be included in the referral letter. Specifically say 'rheumatology' not 'specialist.' Mention HLA-B27 positivity prominently if you have it — it will affect triage priority.

You are the expert on your own experience

Doctors are the experts on medicine. You are the expert on what you feel. When those two things are in conflict — when you can feel that something is wrong and you are being told nothing is — that conflict is worth pursuing.

Almost every AS patient, in retrospect, wishes they had pushed harder and sooner. The system is not designed to reward self-advocacy. But getting there faster matters — for your function, for your future, for your mental health, and for slowing damage that becomes irreversible if left untreated.