People with AS generally begin to experience symptoms at a much earlier age compared with other inflammatory conditions. There is evidence that AS may be inherited - but what triggers the onset of symptoms is not fully understood. The first symptom people with AS typically get is a dull pain in the lower back that comes on gradually over time. The pain is generally felt deep in the buttock and/or in the lower back (lumbar) regions and is accompanied by morning joint stiffness in the same area that lasts for a few hours. These symptoms can improve with exercise, however return when at rest. The pain becomes persistent and is usually worse at night disturbing sleep.
Other physical symptoms associated with AS may include:
- Pain in the back of the thigh
- Pain or tenderness around the joints
- Inflammatory bowel disease
- Inflammation in the eye
- Heel pain (enthesitis)
- Fatigue
How does the condition progress?
It's hard to say how ankylosing
spondylitis will affect you in the years to come. In some people
the symptoms rapidly become worse, but in others they may remain
mild for many years. Usually the typical symptom of back pain
develops gradually. You might find that over time this pain
radiates down to your buttocks and into the backs of your
thighs.
Your symptoms will probably wax and
wane over the years with flares causing periods of worse pain and
stiffness, followed by periods when your symptoms get much better.
You'll probably find that your early morning stiffness is eased
with gentle exercise and by taking a shower or using a heat
pad.
As the disease progresses you may
lose some flexibility in your back as the bones in your spine fuse
together.
The spine is made up of 33 bones known as vertebrae and can be
divided into three sections; the cervical, thoracic and lumbar
regions.
When someone develops AS, ligaments or tendons which are
connected to bones become inflamed (swollen). This inflammation
usually begins at the base of the spine in the sacroiliac joint
(found between the sides of the sacrum and the rest of the pelvis),
and is known as sacroiliitis.
This inflammation of the ligaments or tendons can begin to wear
away the nearby bone. Once the inflammation goes down, abnormal new
bone can develop where the original bone was worn away. This means
joints can become fused together and become less flexible.
You may find it harder to do everyday things like pick something
off the floor or wash yourself in the bath. This may cause you to
stoop.
Some other joints in your body may
also be affected as ankylosing spondylitis progresses. Your neck
and rib cage may become more rigid.
You may worry that you'll become disabled. But most people
(about seven to nine out of 10) with ankylosing spondylitis are
only minimally disabled by their condition and can continue to look
after themselves.
Complications
There are some complications that can occur as a result of ankylosing spondylitis. These include:
- Weak and brittle bones. You may develop osteoporosis, which increases your chances of bone fractures, including breaks in your spine.
- Redness and swelling in your eye. This is called uveitis, or iritis. It tends to affect just one eye and if untreated can damage your eyesight, but it's easily treated with eye drops. If you get pain or redness in your eye or any changes to your vision you should see your GP as soon as you can.
- Heart disease. This is more common in people who have ankylosing spondylitis than those who don't have it. Your doctor will be able to tell you about what you can do to reduce your risk of having a heart attack or stroke.
- Compressed nerves. If you get pain and numbness in your buttocks and legs, this may be because the bones at the bottom of your spine may be pressing on the nerves at the base of your spinal cord. This is a condition called cauda equina syndrome. If unchecked, it can affect your ability to walk and you may lose control over your bladder and bowels. You need to see your doctor urgently to relieve the pressure on your nerves.
- Less flexibility. Over the longer term, some people with ankylosing spondylitis become less mobile, but you're not likely to become severely disabled.
When to see your GP
If you get any of the following symptoms and you're under 35, it's possible that you have ankylosing spondylitis and should see your GP as soon as you can:
- Your spine feels stiff and uncomfortable first thing in the morning.
- You get pain in your buttocks and neck.
- You've lost weight.
Don't put off making an appointment or worry that you're wasting your doctor's time. It's important to get treatment for ankylosing spondylitis at the earliest possible time in order to get the best outcome.
Symptom diary
This symptom diary provides a simple way for you to keep a
record of how your ankylosing spondylitis is affecting you during
your treatment, both physically and emotionally.
Why is it useful to record this information?
By completing the symptom diary, you will have a clear and
accurate record to share with your healthcare professional, so they
can decide if your ankylosing spondylitis symptoms are being
managed effectively. If they decide your symptoms are not being
managed as well as they could be, they may consider changing your
current treatment plan.
How to complete the symptom diary
You will need to fill in details in the symptom diary between
each of your scheduled visits to your healthcare professional. Take
your completed symptom diary with you every time you have an
ankylosing spondylitis appointment to help discuss how your
symptoms are affecting you and whether they have changed.
The diary contains a number of questions. These include:
- How is your overall level of fatigue/tiredness?
- What is the overall level of pain in your neck, back or
hips?
- Is your ankylosing spondylitis impacting on your daily
activities?
- How is your ankylosing spondylitis making you feel?
Before each hospital/ankylosing spondylitis clinic visit, rate
how your ankylosing spondylitis has affected you on a scale of 0
(not at all) to 10 (very much) for each of these questions.
It is also important to write in more detail how you are
feeling, in addition to rating your symptoms on a scale of 0 to 10.
You will find there are other questions in the symptom diary which
require more information. These questions include:
- What sort of activities have you missed because of your
ankylosing spondylitis symptoms?
- Have you felt self-conscious about your ankylosing
spondylitis?
- Have you taken any time off work due to your ankylosing
spondylitis symptoms?
There is space within the symptom diary to record any other
additional information you think your healthcare professional may
wish to know. For example:
- How you are feeling emotionally?
- If you have experienced any other symptoms not listed in the
diary
- What symptom bothers you most?
- How long your symptoms last?
- When you have a particularly good or bad day?
Is there anything you have done that helped your symptoms?
Getting the most out of the symptom diary
When you take your completed diary to your healthcare professional, it is important they recognise how your symptoms have been since your last visit. Reading your diary before your visit, to refresh your memory may be helpful so you can answer any questions you may be asked.
Tell your healthcare professional when your scores are very high or very low, and also let them know if there are any symptoms in particular which cause you more pain.
If you have written more detailed notes about your ankylosing spondylitis symptoms, it may also be useful to share these with your healthcare professional.
Click here to download the symptom diary.