Axial spondyloarthritis (AxSpA) is an inflammatory arthritis where the main symptom is back pain.

Axial spondyloarthritis (AxSpA) is an umbrella term and it includes:

  • Ankylosing Spondylitis (AS) - Where changes to the sacroiliac joints or the spine can be seen on x-ray.
  • Non-radiographic axial spondyloarthritis - Where x-ray changes are not present, but inflammation is visible on MRI scan, and you have symptoms.

What happens?

It is a form of inflammatory arthritis that mainly affects the spine but can also affect other joints, tendons and ligaments.

Other areas such as the eyes and bowel can also sometimes be involved.

  • Inflammation can happen where ligaments or tendons attach to the bone. This is called an enthesis.
  • This inflammation may cause some damage to the bone at the attachment site. This is known as enthesopathy.
  • As the inflammation settles, the body starts to heal by forming new bone. However, this new bone can reduce flexibility if it replaces the stretchy tissue of ligaments or tendons.
  • If this cycle of inflammation and healing keeps happening, more bone can form. Over time, the bones in your spine (called vertebrae) may join or fuse together, which can limit movement.

Typical symptoms of AxSpA include:

  • Back pain and stiffness that starts slowly over weeks or months, rather than suddenly over hours or days.
  • Stiffness and pain in the morning, which usually improves during the day, especially with movement or exercise.
  • Symptoms lasting more than 3 months, rather than coming and going in short episodes.
  • Feeling better after exercise and worse after resting or sitting still for a long time.
  • Unexplained weight loss, especially in the early stages.
  • Feeling unusually tired or fatigued.
  • Feeling hot or feverish, and having night sweats.

The aim of the AxSpA clinic is to support a person living with AxSpA to optimise opportunities to live an active and independent life.

Attending AxSpA clinics is highly recommended to increase or maintain your physical function, manage your pain and identify changes in disease activity.

The clinic appointment will involve:

  • Performing at least annual assessments to monitor range of movement, posture, disease activity and physical functioning
  • Identifying any concerns regarding medication and pain management
  • Reviewing blood monitoring results
  • Giving advice and education on the management of AxSpA
  • Providing treatment programmes specifically for the needs of the patient which can include exercises to maintain or improve range of movement, strength and posture
  • Advice on self-managing exercise
  • Raising any concerns to the multi-disciplinary team

The AxSpA clinic appointment:

  • The appointment with the specialist physiotherapist will be up to 40 minutes long.
  • You will continue to see the consultant rheumatologist or consultant physiotherapist at every alternate appointment.
  • The frequency of appointments will depend upon how well controlled your AxSpA is and your current medications.
  • If you are managing your AxSpA well without regular medication and have low disease activity you may be considered for patient initiated follow up. This would mean you do not have regular follow up appointments and contact us for review when you need to.

What if I flare between scheduled review appointments?

If your symptoms flare between scheduled review appointments and your current flare management plan is not effective, please contact us via email or by phone (Rheumatology Advice Line answer machine: 01772 777 981) and you will be contacted during working hours to discuss your symptoms.

A flare care appointment can be arranged for you if needed.

Exercise is the single most important thing you can do to help yourself.

AxSpA is a condition for life and during its course it may affect you differently at different times. The fitter and more flexible you are, the better able you will be to manage your symptoms.

To manage your AxSpA well it’s not enough to rely on medication. You also need to exercise.

Benefits of exercise:

  • Increased flexibility – the more flexible you are the easier it is to do everyday tasks
  • Increased range of movement – the more mobility you have the easier it is to do things
  • Improved posture – better posture makes you feel better in yourself and reduces feelings of self-consciousness
  • Improved sleep – exercise is physically tiring which improves sleep quality, ensuring you wake feeling refreshed
  • Reduction in stiffness and pain – exercise can result in less pain at night and improved sleep quality

The focus for exercise for people with AxSpA is on improving or maintaining your:

  • Range of movement in joints
  • Posture control
  • Muscle strength
  • Muscle length
  • Lung capacity
  • Balance
  • Cardiovascular fitness

Any exercise you decide to undertake needs to be regular, consistent and kept up over the long term. So, it’s important to choose something you enjoy.

We run a weekly exercise class on a Tuesday morning that you can opt into at any point of your journey under our service to help support you to manage your spinal symptoms well. Please email or speak to any member of the Rheumatology Team for access and further information.

Please wear comfortable clothing and sensible footwear, bring a drink and any medications that you may require during the class.

Occupational Therapy:

Occupational therapists help and support people to maintain independence and quality of life in their daily activities.

With Axial Spondyloarthritis, back pain and fatigue may affect activities such as work, driving, personal care and housework.

We recognise that not everyone is the same and has different priorities and goals.

As occupational therapists we work closely with our Physiotherapy and Rheumatology team colleagues to ensure you feel supported and able to confidently manage your condition.

Occupational therapy appointments can be conducted face to face or via telephone or video call. Please let us know which you would prefer. Please speak with your rheumatology consultant or physiotherapist if you have not been referred and feel you would benefit from an assessment.

Key areas of focus:

  • Self-management and optimising function.
  • Assessment of function in all areas of life such as routine domestic and personal care tasks, leisure and work.
  • Fatigue, and strategies to manage and improve energy levels.
  • Advice on how to adapt activities to compensate for any limitations.

Intervention may involve:

  • Recommendation of equipment, minor adaptations and assistive devices to make tasks easier.
  • Recommendations as to environmental adaptations at home to improve accessibility and safety.
  • Work: discussions about reasonable adjustments, resources for employers and advice where further support is available.
  • Strategies around pacing, relaxation and realistic weekly goal setting.
  • Advice about leisure activities and maximising participation and quality of life.

Useful resources

National Axial Spondyloarthritis Society

NASS Guide for Employers | National Axial Spondyloarthritis Society

Family life | National Axial Spondyloarthritis Society

Driving | National Axial Spondyloarthritis Society

Your Fatigue | National Axial Spondyloarthritis Society

Lancashire and South Cumbria - AskSARA

Lift up your everyday - managing energy | RCOT

Access to Work: get support if you have a disability or health condition: What Access to Work is - GOV.UK

WorkWell Preston - Active Lancashire