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Ankylosing Spondylitis in Women: Why It Is Often Missed and How It Is Diagnosed

By Dr Heal Pain Cure Hospital

Ankylosing Spondylitis in Women: Why It Is Often Missed and How It Is Diagnosed | Dr Rakesh H J, Dr Heal Pain Cure Hospital, Bengaluru

She is in her late twenties. For three or four years her lower back has been stiff every morning, so stiff that getting out of bed and bending to fill the water pot takes real effort. By mid-morning, after moving around, it eases. Some weeks the pain jumps to her neck, her heel or her ribs. She has been told it is “posture”, “weak core”, “lack of calcium” and, more recently, “fibromyalgia”. Her X-ray was normal. Nobody has mentioned ankylosing spondylitis, because, as one relative put it, “that is a men’s disease”.

That belief is one of the main reasons women with ankylosing spondylitis (AS) wait years longer than men for a diagnosis. In this guide, our pain specialists explain how AS and the wider family called axial spondyloarthritis show up differently in women, why a normal X-ray does not rule it out, how it is confused with fibromyalgia and ordinary back pain, what to plan if you want to become pregnant, and the daily habits that genuinely help.

Quick answer

  • Ankylosing spondylitis is not a men-only disease. Women get it far more often than old textbooks suggested, but they are usually diagnosed later.
  • Women more often have neck and upper back pain, widespread aches, heel or tendon pain and tiredness, rather than the classic picture of a stiff, bent lower spine.
  • Many women have non-radiographic axial spondyloarthritis: the X-ray looks normal, but an MRI of the sacroiliac joints shows active inflammation.
  • It is often mislabelled as fibromyalgia or mechanical back pain. Back pain that is worse after rest and better with movement is the key clue.
  • Pregnancy is possible and usually goes well, but it needs planning with your rheumatologist. Never stop your medicines without advice.
  • At Dr Heal, we confirm the diagnosis with careful examination, blood tests and MRI under one roof, work alongside your rheumatologist, and add steroid-free pain care, nutrition and guided exercise.

Years of morning back stiffness and no clear answer?

Our pain specialists can look at your whole story, arrange HLA-B27, CRP and MRI tests under one roof, and explain the results in plain words. Open 24 hours.

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What is axial spondyloarthritis, and how is it related to ankylosing spondylitis?

Axial spondyloarthritis (axSpA) is a long-term inflammatory arthritis that mainly affects the spine and the sacroiliac joints, where the base of the spine meets the pelvis. The immune system drives inflammation where ligaments and tendons attach to bone. Over years, in some people, the body responds by laying down new bone, and parts of the spine can slowly stiffen or fuse.

Doctors now divide axSpA into two groups:

  • Radiographic axSpA, the condition traditionally called ankylosing spondylitis. Damage to the sacroiliac joints is visible on an ordinary X-ray.
  • Non-radiographic axSpA (nr-axSpA). The symptoms are the same and can be just as painful, but X-rays look normal. Inflammation is seen only on MRI, or suspected from blood tests and the pattern of symptoms.

Many people with nr-axSpA never progress to X-ray changes, and some do so slowly. Women make up a large share of the non-radiographic group, which is one reason they are missed. For a full background on the gene test and the classic disease, read our guide HLA-B27 positive? Understanding ankylosing spondylitis.

Why is ankylosing spondylitis diagnosed later in women?

The “male disease” belief

Early research on AS relied heavily on X-ray changes, and men tend to develop visible spinal fusion more often and sooner. So the disease came to be seen as one of young men. Newer studies using MRI show that axSpA is common in women too, and that the non-radiographic form affects men and women at fairly similar rates. Unfortunately the old idea still shapes what many families, and some doctors, think of first.

A different pattern of symptoms

Women with axSpA often describe:

  • Pain in the neck, upper back and between the shoulder blades, not only the lower back.
  • Enthesitis, meaning painful tendon attachments: the heel (often mistaken for plantar fasciitis), the back of the heel as in Achilles tendinopathy, the outer hip, or the chest wall where ribs meet the breastbone.
  • Swelling in a few peripheral joints such as a knee or ankle, which may first raise the question of rheumatoid arthritis or osteoarthritis.
  • Widespread pain and heavy tiredness, often with poor sleep.
  • Associated conditions such as psoriasis, inflammatory bowel disease, or a past episode of a red, painful eye (uveitis).

Blood markers of inflammation such as CRP can be normal or only mildly raised, and women are somewhat less likely to be HLA-B27 positive. None of this means the disease is milder. Studies of daily function and pain often show women carry a heavy symptom burden even when X-rays look better.

Other labels that get in the way

Back pain in women is easily put down to periods, pregnancy, lifting children, housework or a desk job. Hip and buttock pain may be blamed on the many common causes of hip pain in women. Each explanation may be partly true, which is exactly why the inflammatory pattern underneath gets overlooked.

Inflammatory back pain or mechanical back pain: how to tell the difference

Most back pain is mechanical: a strained muscle, a worn disc, or lumbar spondylosis in older adults. Inflammatory back pain behaves differently, and the difference is mostly in your story rather than your scan.

FeatureInflammatory back pain (axSpA)Mechanical back painFibromyalgia
Usual age at startBefore 45, often teens to thirtiesAny age, more common with ageAny adult age
Morning stiffnessLong, often more than 30 minutesShort, eases within minutesStiff and achy, variable
Effect of restWorse after rest or sittingUsually better with restLittle change
Effect of exerciseClearly better with movementOften worse with activityGentle activity helps over time; overdoing it flares pain
Night painWakes you in the second half of the nightUsually only when turningUnrefreshing sleep, widespread aches
Buttock painMay alternate between sidesUsually one side, may go down the legTender points all over, not one joint
Response to anti-inflammatory tabletsOften a strong, quick responsePartialUsually little
Key testsMRI of sacroiliac joints, HLA-B27, CRPExamination; scans only when neededDiagnosis by pattern; tests mainly rule out other causes

Long morning stiffness is not unique to axSpA, and our guide to morning joint stiffness explains other causes. Pain on one side just above the buttock can also come from the facet joints or SI joint for mechanical reasons, as described in lower back pain on the right side above the buttocks.

Is it fibromyalgia, axSpA, or both?

Fibromyalgia is a real condition in which the nervous system becomes over-sensitive to pain, causing widespread aches, fatigue and poor sleep. It is diagnosed far more often in women. The trouble is that axSpA can also cause widespread pain and exhaustion, so a woman with untreated inflammation may be given the fibromyalgia label and nothing more.

The two can also exist together. Long-standing inflammatory pain, broken sleep and worry can sensitise the nervous system, as we explain in chronic pain and the mind. A good assessment asks whether there is active inflammation that needs treating, a sensitised pain system that needs a different approach, or both. Low thyroid, explained in hypothyroidism and body pain, and low vitamin D and B12 levels can add to the aches and should be checked.

Normal X-ray, inflamed MRI: understanding non-radiographic axSpA

An X-ray shows bone damage that has already happened, which can take years to appear. An MRI, especially special fluid-sensitive sequences, shows bone marrow oedema: swelling in the bone next to the sacroiliac joints, a sign of active inflammation. This is why a woman with a normal X-ray can still have significant axSpA.

Two cautions matter here. First, a plain lumbar spine MRI ordered for back pain may not include the sacroiliac joints properly, so the inflammation can be missed; the request should ask for the SI joints specifically. Second, mild bone marrow oedema at the SI joints can also appear after childbirth, in runners and in people doing heavy physical work, without any axSpA. So an MRI finding has to be read alongside symptoms, examination, HLA-B27 and CRP, never on its own.

Being HLA-B27 positive does not mean you have the disease, and being negative does not rule it out. The diagnosis is a clinical judgement that puts all the pieces together. If you have already had several scans and opinions, our guide on which doctor to see and which tests you need for spine pain can help you organise the next step.

Pregnancy and ankylosing spondylitis: planning ahead

Most women with axSpA have healthy pregnancies and healthy babies. AS does not reduce fertility in itself. The key word is planning, ideally a few months before you start trying.

  • Talk to your rheumatologist before conception. Some medicines are considered compatible with pregnancy, while others need to be changed well before you conceive. Anti-inflammatory painkillers are generally avoided in later pregnancy. These decisions are individual.
  • Never stop your medicines on your own when you find out you are pregnant or while trying. A sudden flare can be harder on you and the pregnancy than a carefully chosen medicine. Call your doctor first.
  • Expect symptoms to vary. Unlike rheumatoid arthritis, axSpA often does not quieten down in pregnancy. Some women feel the same, some worse, and flares after delivery are common. Arrange extra help at home for the early weeks.
  • Tell your obstetrician and anaesthetist early. Most women can have a normal delivery. If the spine is very stiff, the anaesthetist will want to plan an epidural or spinal anaesthetic in advance.
  • Do not assume all pain is AS. Pregnancy itself brings back and pelvic girdle pain, and some women develop nerve pain, covered in sciatica in pregnancy.

Many mothers worry about passing the condition on. A parent who carries HLA-B27 can pass on the gene, but most people with the gene never develop axSpA. It is worth discussing, not fearing.

When ankylosing spondylitis needs urgent attention

Call us now on 07969288086. Our doctors are available 24 hours if you have:

  • New, severe neck or back pain after even a minor fall or jolt, especially if your spine is already stiff, as a stiff spine can fracture more easily
  • A hot, very swollen joint, or back pain with fever, chills or unexplained weight loss
  • New weakness or numbness in the legs, or any change in bladder or bowel control
  • A red, painful eye with blurred vision or sensitivity to light: this may be uveitis and needs an eye specialist the same day, and we can help you arrange it
Call 07969288086 nowBook an urgent appointment

Urgent: for suspected fracture, nerve weakness or signs of infection, call us right away on 07969288086 (open 24 hours) for an urgent appointment. If you have chest pain, sudden breathlessness, or heavy bleeding or severe abdominal pain during pregnancy, go to the nearest emergency department immediately.

How Dr Heal treats ankylosing spondylitis in women

AS is a lifelong condition, and good care is a team effort. Medicines such as anti-inflammatory tablets and, when needed, biologic or targeted therapies prescribed by a rheumatologist are central for many people, and we work alongside them rather than replacing them. Our part looks like this:

  1. Listen first, then test. A detailed history of the pain pattern, eyes, skin, gut and family, plus a full examination. HLA-B27, CRP, ESR and a targeted SI joint MRI can be arranged at our in-house laboratory and radiology facilities, and read together with your symptoms.
  2. Coordinate your medicines. If you need disease-modifying treatment, we help you reach a rheumatologist and keep your plan joined up. We never ask you to stop prescribed medicines.
  3. Ease stubborn local pain without steroids. For a painful heel, tendon attachment or joint that stays sore despite good disease control, our doctors may use a regenerative injection prepared by Dr Heal Pharma that contains no steroids, painkillers or antibiotics. Read about regenerative medicine and why repeated steroids carry risks in steroid side effects.
  4. Support the whole body. Through functional medicine and clinical nutrition we look at vitamin D, iron, thyroid, blood sugar, sleep and weight, and screen for bone thinning, since inflammation can weaken bones; see osteoporosis and the spine.
  5. Guided rehabilitation and follow-up. A posture, mobility and breathing programme suited to your stage of life, reviewed regularly so you keep moving freely.

You can read more about our back pain treatment and joint pain and arthritis treatment, or meet our pain specialists.

What you can do at home

  • Move every day. Exercise is treatment in AS, not an extra. Our daily exercise routine for ankylosing spondylitis covers spine mobility, posture and breathing. Ten minutes in the morning beats one long session a week.
  • Use a warm shower to loosen up before stretching, and break long sitting at a desk or in traffic every half hour.
  • Protect your sleep. A firm mattress and a thin pillow help keep the spine straight. Our guide to sleep and chronic pain has more ideas.
  • Eat for less inflammation. Plenty of vegetables, dals, whole grains, nuts and fish if you eat it; less sugar and fried snacks. See diet and arthritis pain, and keep a healthy weight, explained in weight and joint pain.
  • Stop smoking. Smoking is linked with more active disease and more spinal damage in AS.
  • Keep a symptom diary. Note stiffness time, night waking, heel or eye problems and flares around periods or after delivery. It shortens the path to the right diagnosis.
  • Do not rely only on painkillers. If you need them for weeks, look for the cause; read why painkillers are not the answer.

Frequently asked questions

Can women get ankylosing spondylitis?

Yes. It was once thought to be mainly a men’s disease, but MRI-based research shows women are commonly affected, especially by the non-radiographic form. Women are often diagnosed years later than men.

My X-ray is normal. Can I still have ankylosing spondylitis?

Yes. In non-radiographic axial spondyloarthritis the X-ray is normal but an MRI of the sacroiliac joints may show active inflammation. Diagnosis combines symptoms, examination, MRI, HLA-B27 and CRP.

I was told I have fibromyalgia. Could it be axSpA instead?

It is possible, and the two can also occur together. Back pain that started before 45, long morning stiffness, night waking and clear improvement with exercise suggest inflammation worth checking for.

Can I get pregnant if I have ankylosing spondylitis?

Yes, most women have healthy pregnancies. Plan ahead with your rheumatologist, because some medicines need changing before conception. Never stop your medicines without medical advice, and expect possible flares after delivery.

Is a positive HLA-B27 test enough to diagnose AS?

No. Many healthy people carry HLA-B27 and never develop the disease, and some people with axSpA test negative. The result is one piece of the picture, not the diagnosis.

Where can I get tested and treated for ankylosing spondylitis in Bengaluru?

Dr Heal Pain Cure Hospital assesses inflammatory back pain, with laboratory tests and MRI under one roof, at its HSR Layout and Banashankari branches. Both are open 24 hours, and patients come from all over Karnataka. Ask about our spine and spondylosis care if you are unsure what your stiffness means.

Your back pain deserves a proper answer

If your stiffness, heel pain or tiredness has been brushed aside for years, come and talk to us. We will look at the full picture and plan steroid-free, joined-up care. Open 24 hours at HSR Layout and Banashankari.

Call 07969288086Book an appointment

This article is for general information and is not a substitute for a medical consultation. Please see a doctor for advice about your own symptoms.

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