Ankylosing spondylitis (AS) is a type of inflammatory arthritis that mainly affects the joints of the spine.1,2 The joints of the neck, back and pelvis can become inflamed causing pain and stiffness.1 It’s also possible for AS to affect other parts of the body, such as the eyes, skin, bowel and lungs.1
AS affects about 1–2% of Australians and is more common in men than women.2,3 Typically, symptoms develop between the ages of 15-45, however, it can take years to obtain a diagnosis.1,2,4
Studies reveal a high mental health burden for younger patients due to the impact of the condition on quality of life, including work, social life and relationships.5,6
Ankylosing spondylitis symptoms
Ankylosing spondylitis symptoms tend to develop gradually over months or years and may come and go over time.7
Progression of the disease can vary widely from person to person.1,2,8 While some may experience symptoms on the milder side with minimal progression, others may experience debilitating symptoms that continue to progress in severity.9
Symptoms can include:
- Pain and stiffness in the back, buttocks and neck, especially in the morning and night. Symptoms are often worse after periods of inactivity and may be relieved by exercise.1,2
- Pain in tendons and/or ligaments (often felt as pain at the front of the chest, back of the heel or underneath the foot).1,2
- Fatigue i.e., extreme tiredness that does not subside with rest.10,11
- Bowel inflammation. People with AS can develop inflammatory bowel disease (IBD) or colitis.11
- Eye inflammation, starting as a painful and sometimes red eye. It may become uncomfortable to look at bright lights.11
- Depression and/or anxiety.11
At onset, AS can present differently in some people, especially in women. While it’s most common for AS pain to start in the lower back and buttocks, some women with AS report symptoms starting in their neck instead.12
It is also common for people living with AS to have flare-ups – when symptoms become more intense for a period of time. Flare-ups can be very unpredictable and can come on with little warning.2
Ankylosing spondylitis causes
The cause of ankylosing spondylitis is not known but it is believed that genetics plays a role.2
That means you are more likely to get AS if you have a history of it in your family.1,2
The gene called HLA-B27 is associated with AS and almost 90% of people with AS test positive for this gene.1 However, HLA-B27 is also present in 8% of the general population, including healthy people without AS.1
Recently, two new genes (IL23R and ARTS1) have also been found to be associated with AS.1
Ankylosing spondylitis diagnosis
Early diagnosis is important so that treatment can be started as soon as possible.2 However, it is common for a diagnosis to be delayed for some years because the disease can initially present with similar symptoms to other conditions, such as chronic lower back pain or fibromyalgia. 4,9,13 Fibromyalgia is a chronic condition characterised by pain and tenderness throughout the body.4 Whilst symptoms are similar, the pain is not associated with tissue inflammation the way AS pain is.4
To be diagnosed with AS there needs to be evidence of changes to your sacroiliac joints (the joints that link the pelvis and lower spine), in addition to other clinical criteria.2
To check for AS, your doctor may ask you to undergo a number of tests including:2
- medical history
- physical examination
- Modified Shober Test to determine if there is a decrease in lumbar spine range of motion14
- scans such as x-ray, CT (computed tomography) or MRI (magnetic resonance imaging)
- blood test to measure levels of inflammation
- genetic testing
If your doctor suspects you have AS, you should be referred to a rheumatologist (a doctor who specialises in conditions that affect muscles, bones and joints, or musculoskeletal conditions). They will further explain what the test results mean.
Ankylosing spondylitis impacts on quality of life
Inflammatory back pain and other symptoms associated with AS can significantly impact your quality of life.9
Daily tasks and exercise
As AS progresses, there is loss of spinal mobility.9 This can mean a reduced range of motion, such as having trouble turning your head to the left and right. Other activities might also become challenging such as bending over to tie your shoes, household chores, reaching for things overhead, driving and exercise.9
AS is associated with work disability.9 One study found that having to leave a job is three times more common in people with AS than the general population.15 This is particularly true if the job requires manual work that involves repetitive bending or twisting.9
Pain, fatigue and other AS symptoms can take a toll on your social life and personal relationships. It can become more difficult to spend time with friends and family, which can negatively impact your mental health and mood.9
As symptoms of AS worsen and take a toll on your overall quality of life, it is possible for the condition to trigger depression and/or anxiety, especially if you have a predisposition to mental health issues. According to a 2019 study, having AS more than doubles a person’s risk of depression.16 Living with other physical ailments such as diabetes, heart disease, cancer or stroke further increases the likelihood of depression.16
Remember: you’re not alone. If you’re concerned about your mental wellbeing or would like to access a federal government subsidised mental health care plan, your GP is the best person to help.
Patient support organisations, specialising in AS, can also provide resources and support. Joining an AS support group and sharing experiences with others living with AS can make you feel less alone and help reduce your emotional burden. Find out more about these relevant groups.
If you’re in need of more urgent assistance, you can reach out to any of the below helplines for fast and confidential support.
- You can also call 13 11 14, 24 hours / 7 days a week.
- Beyond Blue
- You can call 1300 22 4636, 24 hours/7 days a week, chat online or email.
Symptoms of AS such as low back pain, joint pain, stiffness, and depression can all contribute to sleep disturbances.17 As a result, you may get stuck in the cycle of feeling more uncomfortable due to poor sleep but being unable to sleep the next night due to pain and discomfort.
While all these impacts are very real, it is possible to minimise how much AS affects your quality life with the right treatment and lifestyle changes.
Ankylosing spondylitis treatment
Currently, there is no cure for AS.2 However, AS treatments have improved greatly, with new medicines that are extremely helpful in controlling the condition.3 This, along with specific exercises and lifestyle changes can help most people with AS lead full and active lives.
Managing ankylosing spondylitis
A holistic approach is key in managing AS. While your rheumatologist and healthcare team will provide you with a tailored treatment plan, learning about AS and taking an active role in managing your condition may help improve your quality of life.
- Arthritis New South Wales. Ankylosing spondylitis. Available at: https://www.arthritisnsw.org.au/about-arthritis/types-of-arthritis/ankylosing-spondylitis/
- Better Health Channel. Ankylosing spondylitis. Available at: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/ankylosing-spondylitis
- Empowered, Arthritis Australia. Ankylosing Spondylitis. Available at: https://empowered.org.au/ankylosing-spondylitis/
- Everyday Health. What Is Ankylosing Spondylitis (AS)? Symptoms, Causes, Diagnosis, and Treatment. Available at: https://www.everydayhealth.com/ankylosing-spondylitis/guide/
- Ozgül A, et al. Clin Rheumatol. 2006;25(2):168-74.
- Park JY, et al. BMC Rheumatol. 2020;4:12.
- NHS inform. Ankylosing spondylitis. Available at: https://www.nhsinform.scot/illnesses-and-conditions/muscle-bone-and-joints/conditions/ankylosing-spondylitis
- HealthDirect. Ankylosing Spondylitis. Available at: https://www.healthdirect.gov.au/ankylosing-spondylitis
- CreakyJoints. Ankylosing Spondylitis Prognosis: What Patients Need to Know. Available at: https://creakyjoints.org/about-arthritis/axial-spondyloarthritis/axspa-overview/ankylosing-spondylitis-prognosis/
- MySpondylitisTeam. Managing Fatigue in Spondylitis. Available at: https://www.myspondylitisteam.com/resources/fatigue-and-spondylitis
- Versus Arthritis. What is ankylosing spondylitis? Available at: https://www.versusarthritis.org/about-arthritis/conditions/ankylosing-spondylitis/
- Spondylitis Association of America. Most Common Symptoms. Available at: https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/ankylosing-spondylitis/symptoms/
- Golder V and Schachna L. Aust Fam Physician. 2013;11:780-84.
- Physiopedia. Shober Test. Available at: https://www.physio-pedia.com/Schober_Test
- Boonen A, et al. Annals of the Rheumatic Diseases. 2001;60:1033-1039.
- Park JS, et al. Sci Rep. 2019;9(1):6736.
- Verywell Health. Sleep and Ankylosing Spondylitis: What’s the Connection? Available at: https://www.verywellhealth.com/sleep-and-ankylosing-spondylitis-6823364
Ready to take control of AS?
Your rheumatologist and healthcare team are your best allies in taking control of AS. It doesn’t matter whether it’s been one or many years since your diagnosis with AS, it’s never too late.
If you think AS is holding you back or impacting your life, it’s time to talk to your rheumatologist about your goals and how you’re managing. Don’t let AS hold you back, take control.
Download the guide to help you make the most out of your conversations with your doctors.