Living with an
Information for patients, families and carers
Table of contents
What is Ankylosing Spondylitis
This booklet has been designed to help people with AS, their families and carers. It deals with some of the key chal enges for people who have AS.
Understanding the effects of AS
This AS resource was developed by Arthritis NSW using an unrestricted educational grant from Wyeth Australia Pty Ltd.
Assemble your healthcare team
We would like to acknowledge and thank the following contributors:
Get to know your medicines
Dr Lionel Schachna
Mrs Margaret LewingtonArthritis NSW Education Committee and staff
AS needs exercise
Mrs Diana Aspinall
All the people with AS who are featured in the photos in this booklet.
What is ankylosing spondylitis?
Ankylosing spondylitis (or AS for short) is a chronic rheumatic condition that
• Reactive arthritis - this is an acute arthritis that
mainly affects the back and neck. The term ankylosing spondylitis is derived
is triggered by certain bowel and genital infections
from the Greek language and is pronounced ‘Ank-ill-ose-ing Spon-dill-eye-tis'.
such as Salmonella or Chlamydia.
Ankylosing means stiffening or joining together and is used to describe the
• Arthritis with inflammatory bowel disease -
fusion of bones in the spine. Spondylitis means inflammation of the spine, a
arthritis can sometimes occur in inflammatory
characteristic feature of AS.
bowel disease such as Crohn's disease and ulcerative colitis.
Is ankylosing spondylitis the same as spondylosis?
• Undifferentiated spondyloarthritis
- this usually presents with symptoms
No. The term spondylosis is used to describe degenerative changes of the
of AS without the characteristic X-ray
spine and is more common in older people. This is unlike AS which is an
changes in the sacroiliac joints. Over time,
inflammatory condition, without degenerative changes, which can produce
most individuals with undifferentiated
overgrowth of bone and can lead to fusion (joining) of vertebrae (bones that
spondyloarthritis will develop ankylosing
e who take an active
make up the spine).
role in managing their
arthritis feel less pain and
AS is an inflammatory condition
Who gets AS?
In AS, inflammation commonly occurs where ligaments or tendons attach to
AS may affect as many as 1 in 300 people in
bone (this is called an enthesis). Ligaments are made of fibrous tissue that
[can be enhanced by] y
the community. It is more common in men, with
connects bone to bone while tendons connect muscles to bone.
3 times as many men having AS compared to
o participate in all
In the early stages of AS most of the pain and stiffness is caused by
women. Symptoms usually begin between the
aspects of daily life and
inflammation. Over time, the process of spinal inflammation and associated
ages of 15 and 45 years.
tissue damage may lead to bony overgrowths (called syndesmophytes,
AS may affect children in different ways to
Associate Professor Nick Manolios, Director
pronounced ‘sin-de-moe-fye-tees') which extend from the edge of one vertebra
adults. When AS appears in children (usually
Sydney West Area He
to the next. This process may lead to ankylosis or fusion of part of the spine
adolescents), it commonly affects the ankles
Westmead NSW and University of Sydney
and sometimes the pelvis. Over time, the elasticity of the ligaments and
and feet rather than the spine.
tendons may be replaced by rigid fused bone, and flexible movement of the spine may become increasingly restricted.
What causes AS?
Approximately 90% of people with AS carry a gene called HLA-B27 (Human Leucocyte Antigen-B27). This is a normal genetic variant and occurs in
AS is part of a larger group of disorders called spondyloarthritis (pronounced
approximately 8% of Caucasians. Only 10-15% of people with HLA-B27 will
‘spon-dill-oh' arthritis) which also includes:
develop AS or another spondyloarthritis. The majority of people with HLA-B27
• Psoriatic arthritis (pronounced ‘sore-attic' arthritis) - this arthritis usually
will therefore not ever develop AS.
occurs with psoriasis (pronounced ‘sore-eye-a-sis'). Psoriasis is a scaly
Finding the HLA-B27 gene does not necessarily mean a diagnosis of AS
skin disorder characterised by scattered red patches covered with white
because the gene on its own does not cause AS. AS is thought to be caused
by a combination of unknown triggers in the auto-immune system of individuals genetically predisposed to developing AS.
What is ankylosing spondylitis?
Chest symptoms - Pain at the front of the chest or between the shoulder blades (made worse by coughing and sneezing) is also a common early complaint.
What happens as AS progresses?
The course of AS is highly variable. Some people have only brief episodes
of back pain with long periods of remission in between times. In others, the
symptoms are more persistent.
Most people with AS experience episodic flares of spinal pain and a slow
decline of spinal flexibility. The long-term outlook in AS can usual y be assessed
by the severity of symptoms over the first 10 years. People with only minor
People with HLA-B27 have a 50% chance of passing the gene on to
restriction in spinal mobility and limitation of daily functioning after 10 years are
their children so an HLA-B27 positive child, of an individual with AS, has
unlikely to develop major problems with AS in the long term.
approximately a 1 in 5 chance of developing AS. If a parent has AS and is
In people with AS, limitation of spinal mobility may appear several decades
concerned they should discuss the option of genetic counselling with their
after the onset of symptoms. The most wel recognised feature of AS, thoracic
kyphosis (pronounced ‘kigh-foh-sis' ), is a late feature of this disorder. Kyphosis is exaggerated forward curvature of the thoracic region of the spinal column
How is AS diagnosed?
resulting in a rounded upper back.
Early diagnosis of AS is important because spinal deformity can be minimised and progressive loss of mobility can be reduced with appropriate management.
Is there a cure for AS?
The objectives of treatment are to reduce pain and stiffness, maintain erect
There is no cure for AS but with new medicines the disease can be managed
posture, and preserve mobility and normal daily functioning. Although there
positively. The effects of AS wil vary with each individual and your healthcare
is currently no cure or measure that prevents the onset of AS, the treatment
team wil strive to achieve periods of remission. This brochure helps provide tips
options have substantial y improved in recent years.
to manage pain and maintain movement.
The diagnosis of AS is made from an assessment of your symptoms, physical examination findings, blood tests and X-rays or MRI scans. These wil be organised by your rheumatologist who can explain the result of each test. MRI is a diagnostic technique that produces computerised images of internal body tissues using magnetic waves.
Sacroili tis (pronounced ‘sack-row-il -ee-eye-tis' ) is an early feature in most
people with AS. The pain caused by sacroili tis is usual y a dul ache felt deep in
the buttock region, due to inflammation of the joint between the tail bone and the
pelvis. The pain can also spread out over the buttocks. At first, it may come and
go, it may just involve one side or move from one side to the other.
Understanding the effects of AS
Back pain - mechanical or
prolapsed disc. In older people,
Does AS affect other parts of the
degenerative or ‘wear and tear'
changes of the lower spine are the
Although AS mainly involves the spine,
most common cause of backache
other areas can be affected.
and unlike AS, these conditions cause ‘mechanical back pain'. This
pain is characteristical y made
worse by activity and improved by
Approximately 50% of the people
rest. Stiffness of the spine in the
with AS have inflammation of the limb
morning is minimal and short-
joints cal ed peripheral arthritis, which
Enthesitis (pronounced ‘en-thess-
lived, and the response to anti-
causes pain, stiffness and swel ing.
eye-tis') is the name given to
inflammatory medicines is modest.
The large joints (hips and shoulders)
inflammation in areas where ligaments
Short periods of rest, appropriate
are most commonly affected.
and tendons join to the bone and is
exercise and physiotherapy
People with AS who have hip joint
a unique feature of spondyloarthritis.
programs form a basis for the
The spine is divided into three sections:
problems often have a more severe
Enthesitis commonly occurs around
treatment of mechanical back pain.
overal course of their disorder. Less
the heel in conditions cal ed Achil es
• Cervical section: 7 vertebrae of the
commonly, the knees, ankles, and wrist tendonitis and plantar fasci tis. This
joints can become inflamed.
Inflammatory back pain
can be chal enging to treat and often
• Thoracic section: 12 vertebrae of
requires management by a podiatrist
the mid-spine, which also join up
By contrast, AS causes
or orthotist (see Chapter 3, Assemble
inflammatory back pain, which is
your healthcare team).
made worse by prolonged rest
• Lumbar section: 5 vertebrae of the
and inactivity. As a result, pain and
stiffness in AS are usual y worse
The lowest lumbar vertebra (the 5th)
early in the morning and when you
sits on a bone that forms the back
first get out of bed. The severity
portion of the pelvis cal ed the sacrum
and duration of morning stiffness
or tail bone. The sacrum looks like a
is a good measure of the activity
keystone in the bony ring or basin that
forms the pelvis. The sacroiliac joints
For people with inflammatory
attach the sacrum to the ilium of the
back pain, regular stretches
pelvic bone on either side.
and exercise relieve symptoms. In addition, anti-inflammatory
Mechanical back pain
medicines usual y provide considerable relief.
Back pain is a very common complaint
You may feel pain in the buttocks
in the community. Most people with
and down your thighs. AS can also
backache do not have AS. In middle
affect the hips, knee and ankle joints.
age, the most common causes of backache are ligament strain and
Understanding the effects of AS
make having sex painful and
Inflammation of the eye (cal ed iritis
AS can cause fatigue and blood
uncomfortable. Sometimes you may
or uveitis) may occur in about 30%
tests can help identify whether there
experience fatigue and tiredness,
of people with AS. In some cases,
is another cause so that appropriate
which can have an impact on your
an episode of iritis or uveitis is the
treatment can be provided. Your
sexual relationship. This may mean
first sign of AS. Iritis or uveitis is
healthcare team are the best people
that you and your partner may
inflammation of the middle layer of the
to advise you on this.
need to find ways to cope with
eye's protective covering.
these challenges. Seek help and advice from relevant healthcare
Typical warning signs might include
Depression and Mood
eye redness and pain, an intolerance
and blood, cramping abdominal pain,
of bright light, and blurry vision.
and patches of bowel ulceration.
AS can contribute to mood changes
This usual y occurs in one eye at a
or depression. Please be aware of
AS and pregnancy
time. Inflammation of the eye can
any mood swings or changes and
Having AS does not appear to have
occasional y lead to a permanent
discuss these with your healthcare
any negative effects on fertility,
loss of vision so it is important to
team or visit www.beyondblue.org.au
Scaly or flaky skin rashes (called
pregnancy or breastfeeding.
treat symptoms early. If any of these
psoriasis) can occur in AS. The
symptoms occur you should see an
areas affected are often the scalp,
If you are pregnant, your doctor or
ophthalmologist (eye specialist), GP
belly button, buttock crease, back
physiotherapist may suggest gentle
or go to the Emergency Department
of elbows and top of the knees. An
physical activity and weight relieving
of an eye or local hospital. If you have
arthritis called psoriatic arthritis may
already been diagnosed with AS, tell
occur in one third of people with
Clinical studies demonstrate that
If you have any questions or
your healthcare professional.
up to 60% of patients with AS have
concerns about the effect
osteoporosis. Osteoporosis is a
of medicines, pregnancy or
disorder that results in a decrease
breastfeeding please discuss these
Heart and Lungs
in the amount of bone tissue in the
with your doctor.
Inflammation of the lining of the bowel
skeleton and increases the risk of
Occasionally, AS can cause scarring
wall may occur in more than half of
having a fracture. Your doctor may
of the upper lobes of the lungs and/or
people with AS. Most of the time, this
perform a bone mineral density
a disturbance of the normal heart
inflammation is very minor and does
(BMD) test to assess the amount of
rhythm. AS can inflame the rib joints
not cause any symptoms. However,
bone tissue in the skeleton.
(enthesitis) and affect the muscles
some people with AS have symptoms between the ribs making breathing, of inflammatory bowel disease
sneezing, coughing or yawning
AS and sex
(usually Crohn's disease or ulcerative
painful. In the later stages of AS the
colitis). Crohn's disease is an
rib joints may become quite fixed and
As AS usually begins in early
inflammatory condition that may affect exercise is recommended to help
adulthood, sexual and reproductive
the gastrointestinal tract. Ulcerative
maintain normal movement of the
health is important to consider.
colitis is a chronic inflammatory
chest wall. (See specific AS exercise
Having AS should not interfere with
disease of the colon that causes
later in this booklet). Smoking should
lovemaking but the inflammation
diarrhoea with discharge of mucus
in hip joints and lower back can
Assemble your healthcare team
There are several healthcare
Psychologist or Psychiatrist
professionals who can provide
Physiotherapists can help with
advice, support and treatment. You,
The diagnosis of a chronic rheumatic
mobilisation techniques, stretches,
as the patient with AS, are the most
illness can be difficult for both the
and assisted movements and
important member of this team.
person with AS and their loved ones.
exercises that are appropriate to
Patient-centred care means that you
Psychologists and psychiatrists are
your condition and needs. They will
and your team can develop, monitor
trained to improve your emotional
help tailor an exercise plan to meet
and review your management plan
wellbeing through counselling and
your individual needs. This includes
together. Your needs wil vary over
medicines where appropriate. Visit
ways to help manage your pain, your
Occupational Therapists can provide
time and your healthcare professionals
www.beyondblue.org.au or www.
daily activities, posture, sport and
advice and assistance with activities of
are the best people to assist you to
daily living – such as rest and activity
improve your quality of life.
periods, work place advice and home modification. If necessary they may
Other medical specialists may
Hydrotherapy (exercises in water)
suggest the use of assistive devices
be recommended by your GP or
can be a more comfortable way of
to make day-to-day activities easier to
rheumatologist. These may include
Your GP will help you to coordinate
exercising. The warmth and support of
perform. Further information is available an ophthalmologist for eye treatment,
your care. They can arrange referral
the water gives pain relief and allows
from Independent Living Centres
a dermatologist for skin treatments
to a rheumatologist and assess if you
a greater freedom of movement to
Australia at www.ilcaustralia.org
and a gastroenterologist for bowel
are eligible for a "Care Plan". A Care
relieve stiffness. Group or individual
Plan means you can access some
sessions specifically for people
short-term sessions by the Allied
with AS can be helpful. Call 1800
Podiatrist or Orthotist
Health Care Team under Medicare.
011 041 for information about your
A podiatrist or orthotist provides
Ideally, all of your healthcare
nearest hydrotherapy class. Aquatic
professional assessment and
professionals will communicate
Physiotherapists can be found at
with each other and with you to
management of your feet. Provision
of orthotics may improve symptoms
co-ordinate your care.
Rheumatologists are doctors who
and some simple measures such as
specialise in diagnosing and treating
better shock absorbing soles can be
bone, joint, and muscle disorders.
Chiropractic, manipulation and
Ankylosing Spondylitis Support
Initially, your rheumatologist may
be involved in diagnosing your
Care is needed when using these
AS support groups are a very
AS. They will discuss your medical
treatments for AS. It is very important
valuable resource - providing support,
history, as well as perform a physical
to discuss the level of manipulation
Your pharmacist is a valuable
information and social interaction.
examination, X-rays and blood tests.
that is suitable for your condition
member of your healthcare team
People who have similar difficulties
Once the diagnosis of AS is made,
with your doctor or specialist before
who can answer your medicine
can provide empathy and share daily
your rheumatologist will discuss
commencing these treatments.
related questions. They can provide a experiences and challenges. For more
treatment options such as exercise
Consumer Medicine Information (See information call 1800 011 041 or
and the use of medicines. Regular
Get to know your medicines section)
visits to your rheumatologist are
document which explains the benefits
necessary to help manage your AS.
and risks of each medicine you are taking for AS.
Get to know your medicines
AS can be managed with a combination of medicines and specific exercises to relieve pain, maintain mobility and a correct posture, so that you can continue to do your daily activities. In this chapter we will discuss the medicines that may be used to treat AS. Although there is no cure for AS, treatment options have substantially improved in recent years. Before considering surgery, pregnancy or breast-feeding, the use of any medicine should be discussed with your doctor.
Consumer Medicine Information (CMI)
Risks and benefits
CMIs are available to help
For further information on
Some medicines may have side
supplements, as well as drinking
consumers use the medicines
any of the medicines listed in
effects. Your doctor has weighed alcohol can affect the way
they take appropriately. There
this brochure please refer to
the risks of using this medicine
is a CMI available for all
against the benefits they expect
If you experience any side
prescription and some
CMIs are also available from the
it will have for you.
effects please discuss these
company making the medicine
It is important that your doctor
with your doctor, healthcare
A CMI is factual, contains no
or the National Prescribing
is aware of your full medical
professional or pharmacist.
advertising material, and must
Service (NPS) Medicines Line
history, including any family
If you experience a serious
comply with the requirements
1300 888 763 available
history of medical problems and
side effect or have questions,
set down in the Commonwealth
Monday to Friday 9am – 6pm
medicines that you are currently
seek medical advice quickly or
Therapeutic Goods Regulations.
taking, so they can make an
contact the Medicines Line on
Ask your pharmacist or doctor
See Chapter 7, Helpful contacts.
accurate assessment of the
1300 888 763.
for a CMI and they will print it
risk and benefits of prescribing
from their computer. Sometimes
medicines for you.
the CMI is provided inside
Other medicines including
the packet or box with your
over the counter, herbal,
complementary medicines and
Get to know your medicines
Analgesics (pain relievers)
Disease Modifying Anti-
Corticosteroids (or steroids)
Pain relievers, such as paracetamol,
Rheumatic Drugs (DMARDs)
Corticosteroids are man-made
may be useful in combination with
DMARDs are medicines commonly
substances that resemble hormones
other medicines that your doctor has
used in rheumatoid arthritis that may
natural y produced by our body. They
prescribed. They can help to manage
improve some of the symptoms of AS,
relieve pain and are powerful anti-
the pain that may be associated
in particular inflammation of the limb
with AS. If the pain is severe and
You may be prescribed corticosteroid
unrelenting, you should see your
tablets, most commonly prednisolone.
GP or rheumatologist and have your treatment reviewed.
These medicines have possible side effects and require careful monitoring
Sulfasalazine is helpful in patients with
of blood pressure, cholesterol, glucose
AS who have pain and swel ing in a
Non Steroidal Anti-Inflammatory
limb joint (e.g. knee, ankle, toes). The
levels and bone density.
ful effect of sulfasalazine is usual y
Biologic medicines are the latest
Corticosteroids may also be given as
NSAIDs are usually the first
not seen for 1-3 months. The most
disease modifying medicines available a local injection into an inflamed joint.
medicines used in the treatment
common side effects are nausea, skin
for treating severe AS. They target the This injection can provide rapid control
of AS. Examples of NSAIDs are
rash and headache. Sulfasalazine
individual molecules that are involved
of pain and swel ing as a short-term
ibuprofen, piroxicam and naproxen.
should not be used in individuals with
in inflammation and joint damage.
A newer class of NSAIDs are the
an al ergy to sulfa-drugs (such as
COX-2 inhibitors, which include
A number of these medicines are
Bactrim® or Septrin®).
celecoxib (Celebrex®), meloxicam
directed against a molecule that
Regular monitoring of blood counts
(Mobic®) and lumiracoxib (Prexige®).
promotes inflammation cal ed tumour
and liver tests are mandatory.
NSAIDs can improve pain and
necrosis factor (TNF) which is a
stiffness by reducing inflammation.
natural substance cal ed a cytokine. In
They are commonly used with other
people with AS, TNF is present in the
types of medicines to get the best
blood and joints in excessive amounts.
Methotrexate is also useful for patients
TNF inhibitors block or neutralise
with pain and swel ing in a limb joint.
TNF, reducing the inflammation and
Common side effects include
The ful effect is usual y not seen for
heartburn, raised blood pressure and
1-3 months. The most common side
swelling of the ankles. These side
The biologic medicines are given
effects are nausea, mouth ulcers
effects are more likely to occur in
either by injection under the skin, or
and fatigue. Folic acid is routinely
individuals over the age of 65 years.
by infusion into a vein. They can only
prescribed to minimise these side
As everybody reacts differently to
be prescribed by a rheumatologist.
effects. Routine monitoring of blood
NSAIDs you may need to switch to a
counts and liver tests are mandatory.
The biologics that are currently
different NSAID to find the one that
Report any infection immediately to
available for use in AS include:
best controls your symptoms with
etanercept (Enbrel®), infliximab
the least side effects. Your doctor or
(Remicade®) and adalimumab
pharmacist can advise you on how
these medicines may affect you.
Living with AS
Tips for living with AS
If you manage your AS carefully, you
When standing, keep your bodyweight balanced and even on both feet.
should be able to carry out most of
Think tall through your whole body, ensuring that you are not flexed at the hips,
your usual activities. For the vast
that you have some curve in your lower back, that your chest is lifted off your
majority of people AS is not a barrier
belt line, shoulders are relaxed (back and down), and that the back of your
to employment, raising a family, or
neck is long, allowing your chin to drop slightly forwards. Do not stand still for
keeping physically active.
too long. When you move and walk, try to maintain this tall posture, but also
The effects of AS are different in each
person. Learning about your condition and what you can do, along with help
Lying down & sleeping
from others, is vital to making the
Make good posture a habit. Changes
most of your life.
happen slowly, so we often don't
A good night's sleep is essential for rest and repair of the body. The best
notice them at the time. It is important
mattress is one that is firm and gives support, but is not too hard. Use only
to check your posture regularly and
one pillow if possible, which fits snugly into your neck and supports the head.
discuss with your healthcare team.
Sleep in the position that you find most comfortable, whether on your back,
Good posture is vital. It's very
front or side. To enhance freedom of movement during sleep, some people
For more information see the posture
important to pay attention to how
with AS prefer silk sheets and silken nightwear.
exercises included within this booklet.
you stand and sit at all times. Stand
If lying on your front, don't always have your head turned to the same side.
as tall and straight as possible. Sit
On your sides, avoid curling up with a lot of flexion (bending) at the hips and
well supported and upright in a
knees. A pillow placed under your top knee may ease back pain at times. If
good chair. These everyday skills will
When sitting, ensure that you have a
lying on your back, pillows and other supports may be useful - but avoid using
help you change the tendency to
good supportive chair - at home and
them all the time as they may encourage muscle shortening. Try not to put
bend forwards and stoop. It is also
at work. It should be firm, upright and
pillows under your knees.
important to be aware of posture as
allow the feet to touch the floor with
Many people wake in the early hours
the knees and hips at a right angle. To
and find it hard to settle again, as
Poor posture may have a negative
avoid neck strain, if you are working
they are feeling pain and stiffness.
impact on the position and function of at a desk or using a computer, ensure
A few simple stretching exercises
your spine. When experiencing pain
that the screen is level with your eyes.
in the evening before going to bed
in the spine, there is a tendency to
Back supports, lumbar rolls, wedge
may improve your sleep. This ensures
stoop. If the position is not corrected,
cushions and other devices may help
that you are inactive for the shortest
there will be chronic joint strain,
to improve the seat you have. Advice
period of time. Alternatively, get up
difficulty breathing, compression of
on these items can be obtained from
and do a few stretches and then
abdominal organs and tightness on
Independent Living Centres Australia
go back to bed. If you continue to
the front of the shoulders. It becomes
have problems with sleeping please
increasingly difficult to straighten up
discuss them with your healthcare
but with practice, you can improve.
Living with AS
sure you stretch and reverse the
a small cushion or back support to
It is necessary to keep the whole
posture you have been using. Contact
maintain a correct and comfortable
body as flexible as possible to
and collision sports are usually not
position whilst driving. If your AS is
minimise rigidity and avoid injuries as
advised. High impact sports like
affecting your neck, ensure that the
much as possible.
football and parachuting are usually
head restraints are correctly adjusted
for you. If you have some neck rigidity
Try to move your spine regularly. Not
from AS your peripheral vision can be
even the best position is as good as
While sports and other physical
decreased. Investigate whether you
moving. Allow yourself to bend and
activities are beneficial, they cannot
can install more mirrors to assist you.
straighten your spine, bend sideways
be totally relied upon to ensure erect
and turn often. Do not sit for more
posture and flexibility. You still need to
Manage your energy
than 20 minutes at a time. Stand up
do the AS-specific exercises daily.
It is quite common for people with
Make life easier
and walk about. Stretch and move
AS to complain that they feel tired.
To help you to continue with your
As the body is using a lot of energy
regular activities, extra resources are
to fight the inflammation that is
available. Specially designed chairs
Having AS usually does not make it
present, fatigue is a recognised
and supportive cushions are available
more difficult to find employment or
symptom of AS. Mild anaemia (which
to help you maintain correct posture
People with AS can participate in a
have a fulfilling life. Most people are
contributes to lowered levels of
while driving or sitting at a desk and
wide variety of sports and activities.
able to continue in their choice of
oxygen in the blood) may also be
simple devices are available to make
Sports and activities that encourage
occupation. During bad times with
present. Your doctor can check for
gardening and other activities easier.
good posture and spinal extension are significant inflammation, you may
this with a simple blood test. It can
For more information on these, talk
recommended. Swimming, walking,
need to modify what and how you do
be managed with medicine and there
with your healthcare team and/or have
tennis and low impact aerobics are all things. Some time off work may be
are also ways that you can help
a look at some of the support sites
good. Golf, cycling and bowling may
necessary. Research has shown that
yourself. Plan your day and week,
listed at the end of this booklet.
be good but these activities need to
on average, you will not need more
pace yourself, vary your activities,
be tailored to your physical capability
time off work than the rest of the
organise yourself and give yourself
and fitness. After any exercise make
time to rest and relax. Moderate
If you are choosing or changing jobs,
exercise and activity is also helpful.
it is helpful to choose something where you can have a range of postures, positions, tasks and time
Take extra care when driving
management. An active job, although
Prolonged periods of driving can
physically hard at times with AS, is
increase pain and stiffness. Make
better than sitting in a chair all day. If
frequent stops and use your
your job prevents you moving much,
exercises to assist your joints to be
compensate by moving more at other
flexible and not stiff. You may need
times. In some work settings the staff OH&S officer can undertake an ergonomic assessment of your physical environment.
Living with AS
• Imagery – imagine doing
Except for people with gout, most
A relevant exercise program is a big
something that is very important to
foods wil not have an effect on
help for people with AS, but this needs
you. Imagine the positive outcome.
AS or arthritis. Be very cautious of
to be balanced with appropriate rest
Daydreaming yourself to this
special diets or supplements that
and relaxation. Relaxation can help
special place can act as a mental
claim to ‘cure' arthritis or to control its
to prevent and reduce excessive
levels of tension and anxiety that often
• Progressive muscle relaxation
accompany AS and arthritis. It can also
– tense and relax muscles in a
A good balanced diet is important
decrease muscle tension and spasm.
specific order. This helps relax part
for maintaining your general health
If you are having trouble sleeping, then
of your body that you may not have
because it wil positively affect your
If you can't eat these foods regularly,
it is important to include a dedicated
realised needed it
total wel being. Remember, your
Omega 3 supplements that contain
period of relaxation just before
• Meditation – this is an excel ent
body relies on you to feed it the
around 4 to 6g (4000-6000mg) per
relaxation technique that involves
nutrients it needs to fight disease
day of fish oil are recommended.
Managing your stress is very important
focusing on breathing, clearing
and resist deterioration. Achieving
It's best to talk with your health
as many people report that high stress
your mind and concentrating on an
and maintaining a healthy weight is
professionals about the safety and
levels tend to make their symptoms
important for everyone.
effectiveness of dietary supplements.
• Massage – there are several types
of massage. Swedish (therapeutic)
Omega 3 may reduce
Tips for effective relaxation:
massage promotes relaxation,
Professional dietary advice can be
Shiatsu (trigger point) therapy
While it's been said that there are a lot
• Find a quiet place, free from
found at the Australian National Health
relieves pain and Deep Tissue
of unproven food claims, there is good
interruptions and loud noises
and Medical Research Council at
massage relieves tension.
scientific evidence that inflammation
• Timing – not after exercise or a
can be reduced by eating foods that
contain Omega 3 fatty acids six times
• A comfortable position –
more often than foods containing
supporting painful joints
Can certain foods affect arthritis?
Omega 6 fatty acids (found in vegetable oils and grains).
• A positive attitude - necessary to
There are many myths about food
al ow your mind and body to relax
and arthritis. Unfortunately, most of it is wishful thinking. There is very little
Foods that are rich in Omega 3 fatty
• Regular practice – relaxing is a skill scientific evidence that diet has an
that gets better with practice
effect on any form of arthritis, including
• Fish (salmon, tuna, herrings and
• Control ed breathing – take in
AS. For example, it is unproven
sardines, canned fish is fine)
several big, slow, deep breaths
that ‘acidic' foods or ‘nightshade'
• Linseed and linseed oil (also cal ed
• Mental focus – avoid distracting
vegetables, such as potatoes,
thoughts, perhaps by repeating a
eggplants, capsicum and tomatoes,
• Canola oil (also cal ed rapeseed oil)
word each time you breathe out
cause arthritis to flare up.
• Look at a calming visual image - to
• Walnuts and pecans.
AS needs exercise
Exercise is one of the most effective
strengthening and stretching routines.
• If you are having a flare of your
treatments for AS. It helps to slow
This may include walking, jogging,
symptoms, temporarily reduce or
down the stiffening of the joints and
dancing, swimming, yoga, tai chi,
modify your exercise, but do not
soft tissues around the joints and
gym programs, weight training,
can help you manage your pain. It
bushwalking, cycling, etc.
• Set short-term goals and celebrate
is wel known that regular exercise
can strengthen your muscles, relieve tension and general y improve your
Tips to keep you exercising
• Keep an exercise diary, so you can
overal health. This means you wil be
It is important to plan your exercise for
see how you are progressing.
able to feel more in control of your AS
times when you're least tired and when
• Work with your physiotherapist to
may have lost. Some of the exercises
and do more in your daily life.
your medicine is having maximum
ensure that your exercise plan is
involve stretching a specific muscle
effect (times of least pain).
best for you.
and some stretch several muscles and other tissues at once.
Exercise to specifically combat AS
It is important to do these exercises
It is essential to perform exercises that • Do activities that you enjoy! Vary
Your exercise programme
with some vigour – but without hurting
are designed to stretch tight muscles
them so you don't get bored.
the body. It is usual to feel some
and ligaments, encourage ful mobility
• It's more fun to exercise with a
Stiffness and loss of flexibility are the
discomfort, as you try to go as far as
and to strengthen your postural
friend or in a group.
greatest problems for people with
you can. If there is pain, check that you
muscles. A range of these exercises,
• Be aware of joint pain and swel ing.
AS, so the most important exercises
are doing it correctly. Good technique
developed by a physiotherapist who
You should feel some stretching
encourage movement. Specifical y,
is vital to obtain the best results and
specialises in the treatment of AS, has
and discomfort with the exercises,
exercises that help the body to loosen
been included in this chapter to either
but stop the activity if it causes you
up and feel free work best.
help get you started or to compliment
your current exercise regimen.
Regular stretching improves the
How to stretch muscles:
flexibility of muscles, tendons and
Specific AS exercises for 30
other soft tissues, which as a result
• Warm up first
mins per day, at least 5 times per
of inflammation can become sore
• Don't hold your breath. Paying
week (preferably every day), are
and difficult to move. If they are not
attention to your breathing can
recommended. A moderate, consistent
stretched, they become shorter and
make the exercise more effective.
exercise program has been shown to
tighter. This can make it harder to
It also helps you relax
be the most beneficial in achieving
stand up straight, to turn and bend, or
results for your AS. It should be
• Keep stretches slow and gradual
to take a deep breath.
individual y tailored to meet your needs
and avoid jerky movements
so as to provide quicker and better
It is very easy to become a little stiffer
• Hold muscle stretches for at least
results for you.
and a little less straight without being
aware of it – the process happens so
As wel as your AS specific exercises,
slowly. The exercises in this book are
• Position correctly / watch your
it is important to do general exercise
designed to combat the damaging
for fitness and wel -being. Regular
effects of AS. In many cases, when
exercise wil also improve your
you start exercising and stretching, you
overal health and enhance your
can regain some of the movement you
AS needs exercise
The PNF method
strengthen are the ones that hold us
Exercise 2. Bridging
To effectively stretch muscles, a long,
up straight – the postural or anti-
Time your breathing with the exercise.
Lift your buttocks off the floor. Hold for
slow sustained stretch is necessary,
gravity muscles. These exercises are
This helps you to relax, to focus and to 5 sec and lower slowly. Try to lift your
while keeping the body relaxed.
designed to increase the strength and
involve the chest appropriately. Do not
buttocks enough to have your shoulders,
endurance of these muscles, to make
PNF stands for Proprioceptive
hold your breath.
hips and knees in a straight line.
it easier to keep in an upright position
Neuromuscular Facilitation and it is
with good posture.
a method of stretching muscles to
A. LYING ON YOUR BACK
maximize their flexibility. A muscle wil stretch further and more easily if
Exercise 1. Knee Rocking
it is first made to contract or work,
These exercises have been designed
Lie on your back with your arms straight,
then relax completely, fol owed
by a physiotherapist specifical y for
palms up and out from your sides, at
by a firm and steady stretch. The
people with AS. They target the areas
shoulder level if possible. Bend both
sequence is ‘contract, relax, and then
most commonly affected and wil give
knees and place your feet on the floor.
passively stretch'. The objective is to
you a general workout. It is advised
Rock knees from side to side.
have muscles contract isometrical y
that you consult a physiotherapist to
Gradual y make the movement larger,
(without movement), then after
help you with identifying which are
but keep your shoulders stil . You may
relaxing, be passively stretched. Hold
the most important exercises for you.
turn your head to the opposite side.
this stretched position, but keep
They wil also be able to check that
yourself relaxed (don't hold your breath
Exercise 3. Arm Sweeps
you have correct technique and that
or tense your body). Repeat this
you are doing them safely. They can
Take your arms from your sides,
sequence another 2 times, each one
also provide modifications to suit your
sliding along the floor, to up and
from the advanced starting position.
particular needs. Regular reviews with
over your head keeping the backs
a physiotherapist are recommended.
of your fingertips touching the floor throughout.
Slide back again. Breathe in and out
Each gain may be smal , but it al adds
as you stretch.
up. Giving a stiff joint another few
It can be helpful to warm up before
degrees of movement is worth having.
you exercise. A few minutes walking
If you don't stretch your muscles,
on the spot, or moving about, or a
in time they wil become tighter.
warm shower can help.
Remember to use the extra movement you gain from the exercises in your daily life. Reach up to tal er shelves
and turn and look further behind you.
Do each exercise at least 5 times. If the exercise is for one side of your
body then make sure you do an equal number for the opposite side – for
Strong muscles support the body.
The muscles that are important to
AS needs exercise
Exercise 4. Legs Wide
Exercise 6. Upper Body Roll
C. FOUR POINT KNEELING
Exercise 8. Arm and Leg Lift
Slide your feet apart, pushing the ankles Keep knees together and slightly bent.
On al fours: position yourself on your
Keep your body steady and balanced,
out, heels leading. Take legs as wide as
Reach forward with your top arm as far
hands and knees, keep your elbows
slowly lift your right arm forwards,
you can, but keep your legs straight and as possible, al owing your chest to roll
keeping it close to your ear, and
your bottom flat. Slide back together.
forwards. Then lift this arm up and over
straighten your left leg behind you,
Exercise 7. Cat Stretch
your body and back behind you, aiming
leading with your heel. Stretch long
to touch the floor with back of your
Let your head relax down between your through your body, from finger tip to
hand. Let your chest rol backwards.
arms and arch your back upwards. Feel toe. Hold this position for 10 sec, then
Look at your hand throughout the
a stretch in the upper back as wel as
lower and repeat with the other limbs.
the low back. Now relax the back and
Look forward at your hand.
let it sag towards the floor. Feel this stretch in both the upper back and the lower back as wel . Look forwards, not upwards, with your head, lifting your chest.
B. LYING ON YOUR SIDE
Make sure you are on your side, not
leaning forward or back, especial y at
Exercise 9. Back Stretch
Exercise 5. Cycle
Rock back onto your haunches, leaving
Bend your top leg up towards your
your arms in front. Try to drop your
chest and then stretch it down straight.
chest as low as possible to the floor
You can also make a cycling action
and look down at the floor. You may
with this top leg. Lead with the heel
also do this with both hands to one
when the straight leg goes backward.
side (b) and then to the other, to help stretch the sides of the body.
AS needs exercise
D. LYING ON YOUR TUMMY
Exercise 13. Back Stretch and Arch
Stretch 1. Hamstring / Back of
Exercise 10. Chest Lift
Let your hands reach towards the
Have a firm, straight chair. Sit with your
floor, curling your whole back. Go
feet supported. Sit tal and straight.
Standing – Place your heel on a small
Lie on your tummy with your arms
as far as you can – reach through
stool in front of you. Keep your knee
relaxed at shoulder height. You may
under the chair if you can. Hang and
straight, your toes pointing up and lean
prefer a smal pil ow under your chest.
Exercise 12. Side Stretch
relax for a few seconds and then
your trunk forwards towards your knee.
Lift your upper body – head, chest,
sit up straight, arch your back away
Keep your chest up and look at your
and arms - off the floor. Do not lift too
Let your hands hang by your sides.
from the back of the chair, place your foot, to avoid curling your back.
high, but make sure you straighten your Lean to one side as far as possible,
hands on your shoulders and take
back. Keep looking down at the same
keeping your buttocks firmly on the
your elbows wide, feeling a stretch
spot on the floor. Hold for 5 sec, and
seat. Avoid letting your trunk turn or roll
across the front of the chest.
then relax before repeating.
and keep your face looking forwards. You may also take your other arm up
and over your head and over to the same side. Come back to straight and then lean to the other side.
Exercise 11. Press-up
Lying – Lie on your back, one leg
Lie flat on your tummy. Place your
out straight and bend the other knee
hands on the floor just in front of your
towards your chest. Straighten this
shoulders. Push through your hands to
leg to the ceiling. You may support it
straighten your arms. Keep your hips
There are several muscles, which are
behind the thigh or you may hold the
on the floor and al ow your back to
important to stretch regularly. A few
foot with a towel.
arch. Look forwards and lift your chest.
are described here. Others include the calf, hip adductors, and quadriceps in the leg and the pectoral muscles at the front of the shoulder.
AS needs exercise
Stretch 2. Hip Flexors /
Stretch 3. Piriformis /
Stretch 4. Neck – Rotation /
G. POSTURE CHECK
Front of Thigh
Throughout the day, the effects of
a. Stand beside a firm chair with one
Lie on your back, bend your left knee
Sit straight in a firm chair, feet on the
gravity try to pul you forward and
knee/shin on the chair.
towards your chest and hold it with
floor. Look to the right as far as you
make it hard to keep straight. Several
your left hand. Hold your left foot with
can. Bring your right hand up to your
b. Step through with your standing leg
positions can help you reverse these
your right hand. Let your knee drop
face and place it on your left/front
to place it in front of your bent leg.
stresses and help you to check if you
out and then pull with both hands to
cheek. Keep your left shoulder back,
Tuck your tummy in, flatten the arch
are keeping straight.
bring your shin towards
(sit on your hand or place it behind the
in your lower back and lift your chest. your right shoulder.
chair). Use your right hand to help your
c. Bend your standing leg and move
head around just a little bit further. Take Long Neck
your trunk forwards a little. Do not
this gently but firm, no jerking. Keep
Lie flat on your back on a firm surface.
your chin up and eyes level.
Keep your chin gently tucked in, avoiding the chin pointing up. Keep the back of your neck long. This may also be done in sitting and standing.
It is also important to stretch your neck forwards, backwards, side-bending and diagonal y. It is important that a physiotherapist demonstrates these stretches.
AS needs exercise (continued)
To contact your Arthritis State office – Freecal : 1800 011 041
Lie on your tummy. This position helps
Stand with your back to a wal . Your
Independent Living Centres
to keep the front of the hips stretched.
buttocks, shoulders and head should
You may wish to have a smal pil ow
al touch the wal . Look straight ahead,
under your chest, and it is helpful to
tuck your chin in and feel long and
(National and ACT):
turn your head to each side for some
tal through your spine and back of
of the time.
the neck. Walk away from the wal ,
keeping in this tal posture.
by Arthritis NSW:
Medicines Information Line:
Phone tol free: 1300 888 763
AS Support Groups:
Arthritis Foundation of WA:
Lie on your back on a bed, with your
Arthritis and Osteoporosis
lower legs hanging over the edge.
This position also helps to stretch the
front of your hips without being on
Arthritis South Australia:
your tummy. Do not let your back arch.
National Prescribing Service:
Arthritis Northern Territory:
Talking with your doctor or pharmacist about medicines is
Contact the Arthritis
National AS Society (UK):
Foundation in your state
on 1800 011 041 to
US Arthritis Foundation:
find out what support is
available in your area.
Information for patients, families and carers
Arthritis NSW, 13 Harold Street, North Parramatta NSW 2151Mail: Locked Bag 16, Post Office,
North Parramatta NSW 2151 Australia
Phone: 02 9683 1622Fax:
Email: [email protected]: www.arthritisnsw.org.auFree telephone advice: 1800 332 131
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