Ankylosing spondylitis

--How do I know if I have ankylosing spondylitis?

You will need to confirm a diagnosis of AS through your doctor or a rheumatologist (a medical specialist in bone, joint and muscle problems). AS only affects a very small proportion of the population, about 0.5 per cent. Both men and women are affected, with the condition being more common among males. There is a familial predisposition to AS, meaning that the risk of developing AS is increased if a relative is affected. A gene called HLA B27 is associated with AS and can be detected in a blood test. You can ask your doctor about this test. Your doctor may suggest x-rays or scans which can also help with making a diagnosis.

The most commonly affected region when you have AS is the sacroiliac joints, where the spine joins onto the pelvis. Sometimes, if the only symptom is recurrent back pain, the diagnosis is missed, especially because AS can start when you are younger (usually in your 20s, but can also start in younger and older people). Often the symptoms come and go, or you have ‘flare ups’.

If you are experiencing stiffness and pain in your spine and other joints and/or tendon pain that is impacting your ability to do your daily activities (work, exercise, sleep), then it is important to see your health professional.

Here are some of the common symptoms:

• pain and stiffness in the lower back, buttocks, mid-back or neck
• pain and stiffness that is often worse at night or after a long period of rest
• pain and stiffness which often improves as you move more
• pain and swelling most often in the larger joints
• tendon pain (for example Achilles tendinopathy and tennis elbow)
• reduced ability to do your usual daily activities
• fatigue or tiredness
• inflammation of the eyes (red eyes), the skin, the lungs and the gastrointestinal tract can also occur
• weight loss
• anaemia

--I’ve had pain for three months, if it’s not ankylosing spondylitis what could it be?

Other inflammatory joint and muscle conditions can have similar features to AS. It is very important to seek an opinion from your doctor or health professional to get an appropriate diagnosis—especially if your pain is ongoing or keeps flaring up. Your doctor may suggest a laboratory test to confirm the diagnosis. A rheumatologist is often the best person to make this diagnosis and to check if you have any other different health conditions.

--What are the risks to my health if I have ankylosing spondylitis?

If you have AS, the risk of developing cardiovascular events (for example, angina, heart attack or stroke) can increase. You are also at an increased risk of your bones becoming fragile if you have a significant physical trauma (like a heavy fall or a car accident). This happens because the spine gets stiffer and more brittle with AS.

To help control these risks, you should work with your health team to ensure you include the following in your management plan:

• a nutritionally balanced diet (to reduce cardiovascular disease risk)
• regular exercise (aerobic and stretching)
• weight control (lose weight if you are overweight to reduce cardiovascular disease risk)
• avoid smoking (to reduce cardiovascular disease risk and disease activity)
• if you do have high blood pressure, diabetes, or a high cholesterol level, your doctor will advise how these can also be treated

--How effective is physiotherapy for treating ankylosing spondylitis?

Physiotherapy forms one component of an overall management plan for AS. The best science or evidence guidelines for the management of AS recommends physiotherapy as a component of care with a focus on education, activity, and exercises including stretching, strengthening exercise, and aerobic exercise (that is, exercise that gets your heart going).

Physiotherapists can also help you learn how to pace activity and exercises, to manage pain flare ups and use exercise to help manage physical and mental wellbeing. Physiotherapists can also help you to manage other conditions commonly associated with AS, including more brittle bones (osteoporosis, osteoarthritis, shoulder pain, and tendinopathies (like Achilles pain and tennis elbow). Ask your physiotherapist for help.

--What can I do at home?

You can do a lot to manage your AS. Getting a good health team around you makes a big difference. You need to take control of your AS—your health team is there to coach you, guide and support your management. Your doctor or rheumatologist will advise you about specific medicines that are appropriate for AS. These are very important to take as they control disease activity and can limit joint and soft tissue damage, help to control pain and allow you to keep moving.

Learning about AS, the triggers for your ‘flare ups’, the role that mood and stress can play, the value of good quality sleep, regular exercise, and good nutrition are all really important. Speak to your health professionals about how to develop a management plan that works for you.

Your management plan should include the following:

• a plan for managing any AS ‘flare ups’
• a plan to help you stay moving that includes stretching, strengthening and aerobic exercise (walking, swimming etc)
• how to look after your joints—including the use of assistive tools for chopping vegetables, opening jars and other activities that can be difficult
• a pain control and mood management plan  
• a plan to help you manage fatigue and improve your sleep and pacing (or ‘chunking’) of your activities. Pacing means doing little bits often so you can avoid pain ‘flare-ups’

Arthritis consumer organisations like Arthritis Australia and MOVE: muscle, bone and joint health can help support you with education, peer support and a nurse helpline.

--How long until I have some relief from my pain?

Everyone is different! AS can vary from mild to severe, so getting relief will depend on your specific case and general health. Ask your doctor or health professional to guide you about when you can expect relief. Also ask about what medicines might be helpful and what you can do yourself at home.

Your physiotherapist will be able to give you helpful exercises and guidance about how to manage your pain and stiffness.