ANKYLOSING SPONDYLITIS
Ankylosing spondylitis is a painful, progressive rheumatic disease, mainly
of the spine. It can also affect other joints, tendons and ligaments and other
areas, such as the eyes and heart.
Ankylosing means fusing together (ankylosis). Spondylitis indicates
inflammation involving the joints of the spine and is derived from the Greek
words describing the building blocks of the spine (spondylos) and
"itis" meaning inflammation. However, it is important to be aware
that the entire fusing of the spine, as implied by the name of the condition,
is not the norm. Many people will only have partial fusion, sometimes limited
to the pelvic bones.
What happens?
The inflammatory process is at the site of a joint or where tendons and/or
ligaments grow into bone. For example, inflammatory change occurs around
vertebral joints and areas of ligament attachment (such as at the ischial in
the buttocks, the breast bone, or where the tendon inserts into the heel). As a
reaction to the inflammation, a small amount of bone erosion occurs. After the
inflammation has subsided, a healing process takes place with the growth of new
bone (reactive bone). After repeated attacks, this additional bone growth can
surround the disc. Therefore, two vertebrae can become one by this merging
process.
What causes ankylosing spondylitis?
The cause is not yet known. However, there have been many important
discoveries since the early 1970s. One is that about 96% of the estimated
80,000 clinically diagnosed people in this country all share the same genetic
cell marker, HLA B27 (Human Leucocyte Antigen B27). This is related to white
blood cells and is quite different from red cell groups such as A, B, 0 and
rhesus markers.
There is evidence that an outside environmental process must be responsible
for initiating the condition and its flare-ups. It could be that a normally
quite harmless micro-organism, which would be dealt with by our immune system,
sets up an adverse reaction after coming into contact with the B27 individual.
In most cases, this leads to inflammation of the sacroiliac joints and to
different areas of the spine.
Who gets ankylosing spondylitis?
It had been observed and documented for many decades that the disease seemed
to occur from time to time in some families. Not until the link with HLA B27
became apparent was it known why. The inherited susceptibility will be
discussed later. The average age of onset is twenty-four years old, and the sex
distribution is two and a half to three males for every one female.
The Formation of the Spine
The spine is made up of 24 vertebrae and 110 joints. There are three
sections: seven cervical vertebrae; twelve dorsal or thoracic vertebrae; and
five lumbar vertebrae. The cervical, or neck section, is the most mobile. In
the dorsal section each vertebra has a rib attached to it on each side. Below
the lumbar section is the diamond shaped sacrum which locks like a keystone
into the pelvis. The joints between the sides of the sacrum and the rest of the
pelvis are called the sacroiliac joints. This is often the starting-point of
the condition where the low back pain and AS begin.
Other back pain and ankylosing spondylitis
Back problems are some of the most common complaints seen in the doctor's
surgery. Only a very few of these people will have AS. Doctors have the problem
of recognising the different types of back complaints presented to them by
their patients. This partly explains several wrong diagnoses - back strain,
slipped disc and sciatica being among the most common ones.
The condition is also sometimes confused with Spondylosis, a term relating
to "wear and tear". This is more common in older people, and the
vigorous therapy associated with AS might be harmful to such individuals.
What are the symptoms of ankylosing spondylitis?
- Slow or gradual onset of back pain and stiffness over weeks or months,
rather than hours or days
- Age of onset in the late teens and twenties, rather than any age; the
symptoms can start at other periods of life, but are more likely to have been
sparked off by illness or injury (i.e. enforced bed rest)
- Early morning stiffness and pain, wearing off or reducing during the day
with exercise
- Persistence for more than three months (rather than coming on in attacks)
- Improvement with exercise and deterioration with rest; the opposite is the
case with mechanical back problems.
In summary, the person is young with gradual onset of pain, and notes that
the pain is worse in the morning and improves with exercise. By contrast,
non-specific or mechanical pain typically comes on rapidly at any age as a
result of some ill-advised movement, is worse in the evening, is episodic in
nature and improves with rest.
The diagnosis of ankylosing spondylitis
The diagnosis is often suspected by listening to the patient's story,
bearing in mind a combination of the above. A doctor will then note the
posture, and might notice that the lumbar spine is losing the forward curve and
is beginning to flatten out. A referral to a rheumatologist will lead to x-rays
being taken of the spine. The rheumatologist will be looking for characteristic
changes to the sacroiliac joints. In most cases, more severe bony changes only
appear after months or even years of disease. Blood tests may be performed and
the ESR (Erythrocyte Sedimentation Rate) or plasma viscosity (PV) measured, in
order to give an indication of the degree of inflammation.
In some cases, where there is still doubt, the rheumatologist might test for
the patient's tissue type. The object is to establish whether the person has
the HLA B27 antigen. About 8% of the British population share this antigen, and
96% of the people who have AS are from this section of the population. In a
borderline situation, the B27 positivity or negativity will help to confirm or
refute the diagnosis. However, it is not a necessary test and should only
rarely be carried out. The test alone can never provide a definite answer.
Although we have been talking about a disease of the spine, pain is not
always confined to the back. Some people will have chest pain from time to
time. This can be alarming. However, the pain does not come from the heart but
from the joints between the ribs and the back bone, from inflammation in the
sternum joints, or from the sites of ligament insertion into the ribs (i.e. the
intercostal muscles). Many people complain of a "shut-in" feeling
because of reduced chest expansion. In these cases the diaphragm does the work
of filling the lungs, rather than the rib cage. Physiotherapists aim to improve
chest movement.
The start of AS often begins with an ache in the buttocks, in the back of
the thighs, down the leg, and in the lower part of the back. One side is
commonly more painful than the other. The pain arises from the sacroiliac
joints where the spine joins the pelvis. The morning stiffness, so often
experienced, wears off during the day. Sleep will often be interrupted by early
morning pain. It is advisable to get out of bed and walk around and try to free
the stiffness with twisting and bending exercises. Sleep deprivation can be a
big problem. Increased pain and stiffness can also be experienced after long
periods of sitting, for example, in a theatre or cinema, or a long car journey.
AS, in its first few years, may cause considerable pain. Anti-inflammatory
drugs are usually prescribed to reduce the pain. Later in life, the disease
becomes less active and may go into total remission. Any noticeable stiffening
resulting from the condition is not a major handicap, providing the forward
stooping posture of the spine has not been allowed to take place. Most people
with the condition are able to continue with their normal working lives. A few
will have to make adjustments, while some might have to find a new and more
suitable occupation. However, rheumatologists tell us that they have long
noticed that their spondylitic patients appear to them to be a highly motivated
group of people, and indeed, the majority of "patients" lose less
time off work than a "normal" individual - the latter being more
likely to take off odd days from work with minor ailments.
Some people, especially in the early stages of the condition, feel generally
unwell. They can lose a considerable amount of weight, feel tired and
depressed. The condition is very variable, and no two people appear to be the
same. Some complain of feeling feverish, which can also manifest itself in
night-time sweating.
The physical examination
When you attend your doctor he will take a history and then examine your
back (looking for muscle spasm, noting the posture and mobility) and then look
at all the other parts of the body, searching for evidence of ankylosing
spondylitis.
Drug treatment
Although the disease cannot be cured, anti-inflammatory drugs, through pain
reduction, often allow improvement in sleep and general well-being, resulting
in a greater ability to carry out exercises. Analgesics themselves have a very
little role, if any, in this condition. Usually, non-steroidal
anti-inflammatory drugs are appropriate. However, for those individuals who
cannot tolerate such drugs, usually those with gastro-intestinal complications,
a pure analgesic may be the only alternative. This is why it is important to
take this medication when the stomach contains food, to protect the stomach
lining from any damage. However, these drugs are not habit-forming.
There are over twenty different non-steroidal anti-inflammatory drugs, which
come in many different shapes and sizes. The best one is a slow release agent
which can be taken on a single occasion per day, usually at night, allowing
improved sleep, less morning stiffness and less pain during the day.
For those with a particularly aggressive disease, and especially people with
peripheral joint involvement, methotrexate, azathioprine and sulphasalazine are
often considered. The last of these has been studied quite extensively and is
particularly useful for peripheral joint symptoms. Their effect on the spine is
probably marginal. Methotrexate is frequently used in people with psoriatic
arthritis, but it remains unknown if spondylitis itself is helped.
It is a big mistake to think that drug therapy alone is appropriate for
managing ankylosing spondylitis. Drugs are simply given to reduce the
inflammation, pain and stiffness, to allow you to become more active.
Limb joints
Occasionally, the condition may affect joints or bony sites other than the
spine. The hips, knees and heels are the most common locations, with aching and
pain sometimes accompanied by swelling in the joint, which in most cases will
settle down after treatment. It is important that the hip joint in particular
is stretched, to prevent stiffening in a bent position which will make you lean
forward.
Other areas of pain
The heel bone may become painful in two areas. Most common is the under
surface, about three centimetres from the back of the foot. This is called
plantar fascitis and can last for many weeks. It may respond to an insole for
the shoe designed to take weight off that part of the heel. The less common
pain arises at the back of the heel where the achilles tendon is attached to
the bone. Pressure from the shoe may aggravate the pain.
Sitting on hard chairs can be unpleasant, as sometimes pain will be felt
under the pelvic bones due to contact pressure.
Soft tissue areas
The eye
It is important for people who have AS to be aware that they might be
starting an attack of iritis or uveitis. Forty percent of people will develop
this problem) on one or more occasions. Usually the first symptom is a slight
blurring of vision in one eye. However, whether this is noticed or not, in most
cases the main symptom is sharp pain, together with a dramatically bloodshot
eye. It is important to receive prompt treatment. To save time, it is better to
go to the casualty department of your local hospital and be treated by the
ophthalmology team. In larger towns and cities there may be an eye hospital, in
which case go there. Not all family doctors are aware of the connection between
AS and uveitis, and many members of NASS have also experienced similar problems
in the casualty department of hospitals. Delay can cause permanent damage.
Usually the pain will subside within hours after the course of
self-administered drops has started. In most cases, this will last for two or
three weeks. It is possible for the eye condition to precede the onset of AS in
the spine, but this is uncommon.
The heart
Heart involvement does occur in ankylosing spondylitis, but in most cases
where it is involved it is so mild that it is difficult to detect. It can
particularly affect the aortic valve, which can leak, and more commonly it can
affect the induction of electrical activity within the heart, but usually any
such problems are unnoticed by the person with the condition. On the very rare
occasion when treatment is needed surgical intervention may be helpful.
The lungs
AS affects the rib joints and intercostal muscles (muscles between the ribs)
which means that breathing, sneezing, coughing or yawning can be painful. This
results in the lungs failing to become fully ventilated, and one should
therefore do breathing exercises (see Schedule of Daily Exercises). This
encourages the lungs to regain their original volume.
The lungs can sometimes get scarred. This problem shows up on a radiograph.
The condition usually gives rise to no symptoms.
In earlier years, TB was common and it was felt that AS predisposed
sufferers to lung infections. There is no evidence to suggest that AS makes you
more susceptible to chest infections.
For all people with ankylosing spondylitis it is of paramount importance to
avoid smoking. The reason for this is that in the late stages of the disease
the chest wall may become quite fixed, and therefore movement of air in and out
of the lungs will be affected. Clearly smoking can make the situation much
worse, and allow development of other infections and lung diseases. Smoking is
dangerous for all of us, but the person with ankylosing spondylitis is at even
greater risk.
Other conditions relating to ankylosing spondylitis
There are a few other conditions associated with ankylosing spondylitis, and
some people will have an overlap with one or more of them. For example,
juvenile arthritis, inflammation of the bowel, Reiter's syndrome, psoriasis,
and some infections of the bowel can predispose to AS. There are some sexually
acquired infections which can also lead on to AS.
Interestingly, the x-ray changes in the spine of primary ankylosing
spondylitis look very much like spondylitls associated with inflammatory bowel
disease. By contrast, psoriatic spondylitis and that associated with Reiter's
disease tend to look somewhat different, with more fluffy radiological changes.
Of interest is that enteropathic spondylitis (i.e. that following
inflammation of the bowel) has an equal sex distribution, whereas psoriatic
spondylitis favours men (in a ratio of 4 to 1) compared to the general
background of ankylosing spondylitis of 2.5 to 1.
Juvenile arthritis
Children can develop arthritis at any age, but boys more than girls from the
age of 10 years many get swollen knees or painful hips. In later life (i.e. in
the twenties or thirties) they may get other features of AS which can be
anticipated if they possess the HLA B27 antigen.
Ankylosing Spondylitis in Children
In Great Britain and the United States 90%, or more, of patients present
over the age of sixteen, in contract to the developing world, where some 25-30%
first develop symptoms in childhood.
This specific difference between adult onset and childhood onset of disease
relates to the fact that children tend to present, not with back pain, but with
peripheral joint involvement - usually the knee, hip, ankle, or other large
joints. Such young onset individuals are more likely to have persistent hip
disease that can lead to a need for total hip replacement. Since this is now so
successful, there should be relatively little concern about such an
eventuality.
Inflammation of the bowel
This is the condition of ulcerative colitis or Crohn's disease, which in a
few people overlap with AS but is not caused by it. The symptoms are bouts of
bloody diarrhoea, often with fever, weight loss, and an associated peripheral
arthritis in some cases.
Reiter's syndrome
This is a group of symptoms which may lead on to AS. These are:
- conjunctivitis (red, gritty, painful eyes) or uveitis
- urethritis (inflammation of the urethra which results in pain on passing
urine, discharge on the end of the penis, especially on waking up in the
morning, and an increased frequency of passing urine); women may get the pain
but will not notice a discharge from the urethra (which is the tube from the
bladder to the vagina)
- arthritis which may affect the large joints, especially in the legs; also
the sacroiliac joints may be very painful, especially at night or on waking
Infection of the bowel
Our intestines contain bacteria which cause no harm and indeed help us to
remain healthy. However, some infections from contaminated food cause
diarrhoea, or in severe cases dysentery. Some of these infections can trigger
AS. It is a cause of great interest to research workers why some bacteria lead
on to AS and others do not.
Sexually acquired infections
Syphilis and gonorrhoea do not cause AS. However, a separate group of
infections known as NSU (Non-Specific Urethritis) includes an infection due to
an organism called chlamydia. This causes urethritis, and sometimes other
features of Reiter's syndrome.
The skin
There is a skin condition called psoriasis which is also associated with AS.
It can present with scaly patches in the skin which in some cases can be quite
extensive. The scalp may be involved. It can also lead to a slightly different
form of arthritis of the joints.
What can I do to help myself?
No two cases of AS are identical. The symptoms will come and go, varying in
intensity. There is no warning as to when the next flare-up will occur and no
indication as to when it will quieten down. Towards the age of fifty, the
attacks may become less frequent. In some cases this period of permanent
remission will happen earlier in life.
The severity of the stiffening associated with the condition will also vary.
It is therefore important to maintain a good posture. Not all patients carrying
out a regular exercise programme will maintain normal posture and mobility.
However, the serious deformities of the spine can be prevented and mobility
maintained. Those people who have lost an upright posture will find it
difficult to come to terms with. Many of them have been greatly helped through
the NASS Newsletter and coming into contact with others through their local
NASS branch.
Successful management of the condition requires co-operation between the
doctor, the physiotherapist and the patient. Any notion that the patient might
have of simply handing themselves over to the doctor, who will prescribe a
magic pill, is not only erroneous but dangerous. It takes considerable
willpower to carry out a regular exercise programme. The NASS branches around
the UK enable members to exercise together under the supervision of a qualified
physiotherapist, who has taken a special interest in the treatment of the
condition. The growth of the NASS branches is now playing an increasing and
important role in the management of the condition in this country.
It is the doctor's job to relieve the pain and the patient's job to keep
exercising and maintaining a good posture
Rest
There is a role for rest in this condition, as it is often advantageous to
take the weight off the spine by getting horizontal for 10-15 minutes. For
some, a period off work and in a rheumatology unit might be necessary. Even
then, this does not mean resting immobile, for this might hasten the stiffening
process of the spine. You should do exercises for your back, chest and limb
joints.
Prone lying
This is lying face downwards, and can be done at the start and end of each
day for twenty minutes, if possible. Those people who have had the condition
for some years at first might not be able to tolerate this for more than five
minutes at a time, and will have to build up with practice until the spine
becomes more relaxed. Some people who might have lost a little posture will
find it more comfortable to put a pillow under their chest. This is not only
good for the spine, as it counteracts the forward stooping posture, but it also
keeps the hip joints straight. Lying on your bed on your back with your legs
dangling towards the floor can also be a good stretching exercise.
The bed
The bed should be firm, without sag. If yours has an interior sprung
mattress, get a suitable board and put it between the mattress and the bed (a
sheet of plywood or chipboard, 70 x 150 x 1cm, is ideal); this is important to
maintain posture. Mattresses should be inspected regularly with posture in
mind. Take care not to purchase a mattress which is too hard. There are a great
number of manufacturers purporting to have some unspecified medical expertise
who are promoting very expensive mattresses. Their products might be very good
but often unnecessarily expensive, so shop around and perhaps change your
mattress more often. Some hotel mattresses are too soft; it may help to drag
the mattress onto the floor in such places. However, this is an area which has
improved greatly in the last few years, as the nation has become more
health-conscious, and the myth of a soft bed indicating greater luxury has been
abolished. Try and reduce the number of pillows to one, or even none. If you
lie on you back with a high pillow you could gradually lose a good posture in
your neck and shoulders.
Chairs
Since untreated AS causes increasing flexion of the spine, every endeavour
must be directed towards keeping an erect posture. It is not common for the
spine to stiffen completely, but in case this might happen, one should always
be aware to do as much as possible to maintain a straight spine.
We know that many NASS members have chosen a chair of their own. Its profile
is fairly high, has a firm seat and an upright, firm back, preferably extending
to the head; arms are also helpful in relieving weight from the spine. The seat
should not be too long, as this makes it difficult to place the lower spine
into the back of the chair. It should be a height which will allow the sitter
to keep a right angle with the knee and hip joints.
Low, soft chairs and sofas are to be avoided. They will encourage bad
posture and increase pain.
The physical examination
When AS is suspected your doctor will examine your spine, noting its posture
and mobility and look for evidence of disease in other parts of your body.
When the disease is in its early stages, there are changes to the sacrum and
the upper pelvis. Evidence can also be seen of changes starting to take place
in the joints of the lower vertebrae. In its advanced stage, the sacroiliac
joints are fused and the joints between the vertebrae are joined together by
bony changes (ossification). This is sometimes known as "bamboo
spine".
What Tests Does the Doctor Do?
The diagnosis of AS is confirmed by x-rays. The characteristic changes are
in the sacroiliac joints, but they may take many months to develop and may not
be obvious during the first consultation. There is some disagreement as to
whether you can have characteristic symptoms before radiological change, or
whether, once the patient actually gets to the doctor and has an x-ray, changes
have occurred. The doctor may also ask for a blood test, which may illustrate
how active the disease is. This is called an ESR, and shows the sedimentation
rate. Sometimes anaemia can occur.
In some cases, especially where there might be some doubt about the
diagnosis, the doctor may ask for the HLA B27 antigen to be tested. If present,
the diagnosis could be supported. If HLA B27 is not present, AS is very
unlikely but not impossible (24:1 against, for those who gamble!)
What is the end result?
The condition takes a different course in different people and no two cases
are exactly the same. The symptoms will come and go over any years. However,
sometimes it does go into remission. In the classic case, the lumbar spine can
become stiff, caused by the growth of additional bone, as can the upper spine
and neck. There is evidence that the patient can play a significant part in
influencing how serious this becomes. People with AS must, throughout this
period, pay constant attention to their posture to avoid the forward stoop
associated with the condition.
The medical management of AS
As yet, there is no cure for AS, therefore the emphasis must be on disease
management. This is why patient education is so important. Most people with the
condition take regular anti-inflammatory drugs to relieve the pain. These drugs
are not habit-forming or addictive. The person must then carry out a regular
exercise programme, in some cases daily, and for others twice a day. There is
no doubt that not only do these exercises help to maintain mobility and posture
of the spine, but they also assist in pain reduction.
The patient, the doctor, and the physiotherapist all play a role in the
management of the condition. The National Ankylosing Spondylitis Society is
also playing an important role in the lives of an increasing number of people
at this level. Firstly, through its growing number of branch organisations,
where regular supervised physiotherapy is provided one evening after work.
Secondly, the society has also produced a physiotherapy cassette tape and video
film of a home-exercise programme.
Not all people react in the same way to each different type of
anti-inflammatory drug. Therefore your doctor might suggest that in time you
try a few of them to find the most effective one for you. There are some which
can be taken last thing at night to release the drug over a few hours. This
will help to maintain pain control over a longer period to assist in a good
night's sleep and less morning stiffness.
Heat
In its various forms heat will help to relieve pain and stiffness. Many
people find a hot shower or bath before bed and first thing in the morning will
reduce pain and stiffness, especially if some stretching exercises are done at
the same time. A hot-water bottle or electric blanket are used by many in bed.
Some people also find that cold, when applied to an inflamed area, helps. For
instance, a bag of frozen peas wrapped in folded tea towels (take care, as ice
can burn).
Surgery
Surgery plays only a small part in the management of this condition. In most
cases where surgery is involved it will apply to about 6% of people with AS who
will go on to have a hip replaced (arthroplasty). These are very successful and
will restore mobility and eliminate pain of the damaged joint. Rarely, surgery
is involved in restoring a straighter posture of the spine and neck to people
who have become stooped over. These people have difficulty in looking forward
and seeing other people's faces, shop signs and door numbers, etc. They will
also have difficulty in crossing the road.
Corsets and braces
Unfortunately, these are still often prescribed by some doctors not familiar
with the modern management of the condition. They very often make matters
worse, as they hold the spine rigid. Not moving leads to not being able to
move! These are a relic of the past when doctors wrongly thought that it was
inevitable that all people with AS would automatically end up with a fused
spine. The corsets therefore concentrated on maintaining a straight spine while
the stiffening process took place.
Radiotherapy
This treatment was once commonly used for newly diagnosed patients. It was
undoubtedly effective, especially in pain control. It is now seldom used, since
there is an increased risk of leukaemia, although this risk is very small.
Most rheumatologists only now use this form of treatment in exceptional
circumstances.
At work
Pay special attention to the position of your back when at work, trying to
avoid stooping. If you sit at a desk or work-bench, pay attention to the height
of your seat. Try and move your spine regularly, straighten it out and stretch
it by sitting tall and pulling your shoulders back. A job that allows a mixture
of sitting, standing and walking is ideal.
A rest is helpful at the end of the working day for those who have a heavy
or tiring job. Lying horizontally for twenty minutes is excellent, as it helps
to counteract the forward stooping posture of the spine.
Some people with AS have found it necessary to make adjustments to their
working lives. However, for many the opportunities for change are not always
available. It might, however, be useful to show your employee this booklet if
you are thinking of discussing a job change within the company.
General health and diet
When this condition is active, health as a whole often suffers. Many people
lose weight and find that they get unusually tired, anaemic, and can get
depressed. A good nourishing diet and plenty of rest is needed.
Your doctor can give you iron tablets for the anaemia. However, one needs
plenty of protein found in meat, fish and pulses. Fruit and vegetables are
sources of vitamins, and milk will supply calcium.
There are many books on diet and arthritis. They tend to contradict one
another and are generally unhelpful, except to their authors and publishers!
HLA B27 - The inheritance factor and the family
AS is virtually confined to the people who inherit the cell marker HLA B27.
This antigen is confined to approximately 8% of the British population with
slight variations among the rest of Europe. About 96% of people who have AS
have inherited B27. However, it is important to remember that there are far
more people with B27 who never get AS.
There are families where one brother and sister might both have inherited
B27 from a parent but only one of them may develop AS. This is sometimes
noticed in identical twins.
Present evidence suggests that if rheumatologists minutely examined all
people with B27 (in other words 8% of the population) they would find
sub-clinical signs of the condition in approximately 10% of those individuals.
Many of these cases are so mild they would never be diagnosed. This fact has
emerged in the days immediately following the discovery of the HLA B27 in 1973.
People who have AS often ask if they should have their children
tissue-tested for HLA B27. The answer is that it should not be done, as the
chances of the child inheriting the B27 gene is 50%. However the chances of the
child developing the condition in a diagnosable form is only 1 in 3 of those
with B27, or 1 in 6 of all the children.
However, we recommend that any child with knee, hip or back symptoms should
go to their family doctor. The doctor should be reminded that the child has a
parent who has ankylosing spondylitis. If he or she is unimpressed with this
information, a gentle hint that referral to a rheumatologist might be required
would be appropriate.
Sexual activity
AS does not normally interfere with love-making. However, there are cases
when it obviously can do, especially when the hips are involved or when the
condition is in a flaring stage. However, there are some people who have lost a
considerable amount of spinal posture which can also produce difficulties
during love-making. Good dialogue between partners should surmount any
problems, and a sense of humour is helpful. Tiredness can be involved with the
condition and this therefore should be borne in mind and not be confused as
some other signal.
The sex distribution of the disease
There have been times, even during the last half of the century, when it was
thought that women never developed AS. As a result they had a very raw deal and
their problem was very often misdiagnosed as a gynaecological one. This is very
odd when one considers that one of the first descriptions of a spondylitic
patient was by a Londoner, Dr Benjamin Travers. In 1824 he described a girl
with onset at 16 years of age who had ankylosed below the first dorsal vertebra
by the time she was 19 years old. It is now thought that about 2.5 men get the
condition for each woman.
Women and ankylosing spondylitis
The main differences in the sexes is that women tend to have more peripheral
joint disease (reminiscent of children) and perhaps less aggressive spinal
disease. Thus women were often mislabelled as having "seronegative
arthritis" or one of the other inflammatory joint diseases. In general,
the approach to treatment is the same in both sexes, although of course
particular care should be paid towards women who may be of child-bearing age.
Pregnancy
Generally speaking, pregnancy in AS is not a problem. In some types of
arthritis, especially rheumatoid arthritis, the condition goes into remission
during the pregnancy period. This unfortunately is not true with AS. As most
births are during one's earlier life, the condition very often has not reached
the stage when it could influence a difficult birth. However, where hips are
involved, a caesarean operation might be necessary.
It is usually advisable to stop taking anti-inflammatory drugs during the
first 12 weeks and last 4 weeks of pregnancy. Try and increase your exercise
programme at this time, in an attempt to reduce any tendency of increased pain
due to not taking the anti-inflammatory agents. The restarting of your drug
regime after birth does depend on whether you are breast-feeding.
Sport
It is important that all people with AS remain physically active. The most
obvious sporting activity of benefit is swimming, since all of the muscles and
joints are exercised in the horizontal position. It also helps to maintain lung
capacity, which in the condition generally falls below normal. However, most
people with AS can continue to take part in a sport of their choice. The
notable exclusion is contact sports, such as boxing, wrestling, judo and rugby.
It could be advantageous, if you do not already participate, to take up a
sport, such as badminton or volleyball.
Car driving
Most people with AS will find an increase in pain and stiffness during
prolonged car driving. It is therefore important to keep breaking one's journey
to walk around. Many people make frequent stops at motorway service stations
and limber up.
Many people with AS have stiff or rigid necks, others have noticeable neck
restriction. This presents problems for drivers, especially at junctions. One
must experiment with fixing an assortment of additional mirrors. Most car
accessory shops will have a selection, for example small mirrors attached to
suction pads which can be located around the windscreen and dashboard.
Most modern cars now come equipped with head restraints. It is important
that these, if adjustable, are appropriate and effective for each person's head
position. Spondylitics with neck involvement can suffer severe injury to their
necks, even in the event of a small impact.
It is difficult to know at what stage the spondylitic driver should inform
the driving licence authorities and driving insurance companies of the
condition. In general, we advise that you should do so when there is severe
neck involvement or peripheral joint involvement, especially the hips. The
society feels that the licensing authorities are very willing to continue
renewing all spondylitics' driving licences. At the time of writing this, not
one of our members, as far as we are aware, has had their licence withdrawn. In
some severe cases licences are issued for a few years and then revised. A few
of these more severe spondylitic drivers qualify for the orange badge scheme.
Life insurance
Because many life insurance companies do not understand the disease they
find it acceptable to add a loading on to spondylitic policies. NASS feels that
this is unjust. We advise that when considering an insurance policy, shop
around through multiple applications and appeal against any loading.
Alternative remedies
Many NASS members have tried alternative remedies. Acupuncture can act as a
temporary pain block and its effectiveness probably relies on the skill of the
practitioner.
Avoid manipulation, as it can be dangerous, especially for those people with
a severe neck condition. Gentle soft-tissue massage can be beneficial, as it
can help to relax muscles which have become tense as a reaction to an inflamed
joint.
We know that many of our members have tried, at some time or other, diet,
acupuncture, aromatherapy, reflexology, homeopathy, etc. None has been
demonstrated to have any advantage over conventional medical treatment.
However, as a society, we encourage our members to do whatever they find helps,
provided it is not expensive or dangerous. It is above all important that the
practitioner of these alternative therapies understands our condition.
Physiotherapy
This is a vital topic and is an area where the spondylitic, to a great
extent, influences the outcome of the condition. On diagnosis you should have
treatment from a physiotherapist and learn an exercise routine which you can do
every day. Until you have been to physiotherapy you should start right away,
and we have therefore listed some exercises for you as a guide.
The physiotherapist's purpose is to make you conscious of your posture,
especially the position of your back, and to increase the range of movement of
certain joints, particularly shoulders and hips. It is important to keep your
muscles strong because reduced movement, even for a short time, allows them to
become weaker and it may take a long time to build them up again. It is also
important to learn how to stretch the muscles that readily become shortened.
NASS can help you with
physiotherapy in a variety of ways.
Firstly, by supplying a physiotherapy cassette of exercises for the home.
Secondly, the society produces a video-tape of a home-exercise programme.
Both these tapes are available from the NASS office. The prices are published
in each edition of the newsletter which is sent to all members.
Thirdly, NASS is opening a growing
number of branches whose members meet once a week for group physiotherapy under
supervision of a physiotherapist. The latest list of branches is published in
each edition of the newsletter. Most branches also provide a variety of social
activities and patient education. These do vary from branch to branch,
depending on the support each branch committee receives.
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