What is AS?

Ankylosing Spondylitis (also called axial spondyloarthritis) is a form of inflammatory arthritis mainly affecting the spine, hips, shoulders, neck and ribcage, although other areas can also be affected (for example, the heel, knee or jaw). AS is caused by a malfunction of the immune system, causing it to attack cells in the body which it isn't meant to.

It results in pain and stiffness in these joints, ranging from mild (a sore, aching feeling) to severe (extreme pain and immobility), fluctuates in intensity in unpredictable ways, and can 'flare-up' seemly for no reason for extended periods of time.

The National Ankylosing Spondylitis Society (a UK charity) provide much more detail on their website, as do Arthritis Research UK. I will not repeat that content here but encourage you to find out more from these organisations.

Living with AS

AS can be challenging to live with for many reasons:

  • unpredictability - constantly shifting patterns of intensity and flare-ups can make things difficult to plan for, and making time commitments stressful and worrying
  • isolation - it can be difficult to socialise and commit to evenings for fear of getting stiff and sore, particularly if you find that symptoms often worsen in the evenings
  • invisibility - even when in moderate or severe pain and stiffness, a person who has AS can seem quite normal from the outside and give no outward sign of discomfort, because they have 'gotten used to' being in pain and being stiff over many years, and don't want to constantly tell people that they are in pain. This can make AS feel invisible to others and lead to further isolation
  • indescribable - it can be very difficult to describe the painful and aching sensations involved in AS, and the extent and speed to which it can come and go seemingly at random. This can make it difficult to explain how you are feeling to friends, family and colleagues
  • fatigue - an underestimated symptom of AS which can have a significant impact on people with AS, often described as equally or more significant than the pain itself. There are many causes of fatigue in AS which can combine, leading to a deep mental and physical exhaustion, including:
    • putting up with continual pain and stiffness can seem endless and draining, leading to frustration and depression
    • increased levels of cytokines are produced due to the continual inflammatory response in AS. Cytokines cause the same drowsiness and fatigue felt when going through a viral illnesses such as flu and colds
    • painkillers are often used to control pain in AS, which usually cause drowsiness
    • stress and anxiety caused by having AS and being uncertain of the future
    • sleep disruption caused by discomfort at night
    • diet can be affected if you find it hard to prepare and cook fresh meals