Fibromyalgia - an information booklet
News Desk UK
This booklet is written for people with fibromyalgia and their families
and friends. It explains how fibromyalgia affects people in different
ways, and how doctors diagnose it. We then explain what can be done to
help with the symptoms, and offer tips and advice on living with it
more easily. Near the end of the booklet you will find information on
how to contact the Arthritis Research Campaign (arc) and other
organisations which can provide information, and a few suggestions for
further reading. Terms that appear in italics when they are first used
are explained in the glossary at the back of the booklet.
What is fibromyalgia?
Fibromyalgia is a name for widespread pain affecting the muscles but
not the joints. It will not cause permanent damage to tissues but the
symptoms may last for months or years. There are no outward signs of
the condition and people with fibromyalgia often look well but feel
awful. Because of this, other people may not appreciate the pain and
tiredness you are suffering and this can cause additional distress.
Fibromyalgia is a common condition and is sometimes so severe that it
affects your work and your personal and social life. In fibromyalgia
the tendons and ligaments, or fibrous tissues (fibro-), and the muscles
(-my-) are affected by pain (-algia) and tenderness. The pain may feel
as though it affects the whole body.
There are usually tender points in certain areas of the body. These
help the doctor to make the diagnosis. If enough pressure is applied to
these places most people will find it uncomfortable, but in
fibromyalgia there is a change in the threshold at which pressure
causes pain and many of these points can be extremely tender.
Tenderness at individual sites sometimes occurs and this can give rise
to localised conditions such as tennis elbow. In fibromyalgia, however,
there is tenderness at a number of points.
In the past fibromyalgia was often diagnosed as muscular rheumatism or
fibrositis, or it was misdiagnosed as degenerative disease of the
joints (signs of wear and tear are very common on spine x-rays as we
get older, whether there is pain or not). Research in the past few
years has led to a clearer picture of what we mean by fibromyalgia, and
the diagnosis is being made more often by rheumatologists and general
practitioners (GPs).
What are the symptoms of fibromyalgia?
Pain, tiredness and sleep disturbance are the main symptoms of
fibromyalgia. Most people feel the pain of fibromyalgia as aching,
stiffness and tiredness in the muscles around the joints. It may feel
worse first thing in the morning, or as the day goes on, or with
activity. It may affect one part of the body or several different areas
such as the limbs, neck and back.
Sometimes tiredness (fatigue) can be the most severe aspect of
fibromyalgia. There may be overall tiredness and lack of energy, or
muscular fatigue and loss of stamina. Either way, it can be difficult
to climb the stairs, do the household chores, go shopping or go to
work. Becoming less fit makes matters worse. Waking in the morning
feeling unrefreshed is common.
Less frequent but still troublesome symptoms include:
poor circulation - tingling, numbness or swelling
of the hands and feet
headache, irritability or feeling low or weepy
forgetfulness or poor concentration
feeling an urgent need to pass water
irritable bowels (diarrhoea and abdominal pain).
Of course symptoms like these can have other causes, and your doctor
can help decide whether any further tests or advice are needed. The
severity of the symptoms and the effects of fibromyalgia can vary
considerably, and this range of severity can cause problems in
diagnosing the condition and lead to varying medical opinions. A
particular feature of fibromyalgia is the need to have the symptoms
recognised and to be taken seriously.
Is fibromyalgia similar to chronic or postviral fatigue (ME)?
The symptoms described in myalgic encephalomyelitis (ME) are often very
similar to those in fibromyalgia except that ME sufferers can often
recall a viral infection before symptoms appeared, and may have less
pain. Many doctors use the term 'chronic fatigue syndrome' rather than
ME. More needs to be known about these conditions before we are able to
say whether they are the same thing.
What causes fibromyalgia?
There is now a clearer understanding that illness is not easily divided
into physical or mental, and that there is an interaction between them.
Fibromyalgia is an illness involving both the mind and the body.
Sometimes this is called a functional disturbance.
Research into fibromyalgia has been stimulated by the finding of
specific tender points and the discovery of sleep disturbance. Brain
wave studies (electroencephalography, or EEG) during sleep have
revealed that people with fibromyalgia lose deep sleep. Deep
(non-dreaming), 'restorative' sleep is repeatedly and excessively
disturbed by lighter, dreaming (rapid eye movement, or REM) sleep. In
an experiment, some healthy people who were woken up in each period of
deep sleep suffered the typical symptoms and tender points of
fibromyalgia.
Several things could cause the disturbance of deep sleep that can
produce fibromyalgia. More than one cause may be affecting any
particular individual. Pain or stiffness in the neck may disturb sleep.
There may be the pain and stress of an injury or of another disease
like arthritis. Emotional pain and the strain of anxiety or depression
brought on by events or relationships at home or at work may also be
important factors, as may abuse in childhood.
Once fibromyalgia sets in there is a vicious circle of pain and sleep
disturbance (see Figure 1). This can be enough to cause depression even
if this was not a problem initially. When fibromyalgia is obviously
associated with another condition like arthritis or depression it is
called 'secondary' (i.e. caused by the other condition). When it seems
to be occurring alone it is called 'primary'.
Research is being carried out to find out whether chemical changes in
the nervous system might cause increased sensitivity (known as
sensitisation) to pressure or relatively minor knocks which would not
normally be painful.
How can fibromyalgia be treated?
There is no overnight cure for fibromyalgia but with the help of your
doctor and family it is possible to find ways of managing your symptoms
so that you can continue with your normal activities. Fibromyalgia may
settle down by itself, but this can take weeks, months or even years.
Your doctor may be able to help you by making the diagnosis of
fibromyalgia and reassuring you that despite all the pain you don't
have a condition that will cause permanent disability. You are no more
likely to develop arthritis later on than anyone else. Your family can
also help with understanding and encouragement.
Your doctor can prescribe a variety of medications which may help with
the pain. These include painkillers such as paracetamol and
non-steroidal anti-inflammatory drugs (NSAIDs) (of which there are
many). A steroid injection in the affected area may give temporary
relief if one or two places are particularly painful.
Your doctor can also try to help with the sleep disturbance. Sleeping
in a soft collar can help some people sleep better, particularly if the
neck is uncomfortable. There is no harm in you trying this for a week
or so, providing you do not get into the habit of wearing it during the
day. Ordinary sleeping tablets are best avoided because they are often
habit-forming and eventually lose their effect.
Many people with fibromyalgia can also be helped by an antidepressant
drug. Some of the older antidepressants (e.g. amitriptyline) have been
found to be effective for long-term (chronic) pain. They may also have
a sedative effect and help to restore a sleep pattern. This can be
helpful even if you do not have the depression which is often
associated with fibromyalgia. The benefit may not be immediate, and you
may notice side-effects - usually drowsiness during the day -
before the benefits, so it is worth trying for at least a couple of
months before deciding if they are helpful. Your doctor will gradually
raise the dose to an effective level.
Your doctor may also refer you to a physiotherapist, an occupational
therapist or a counsellor for further information and advice about
fibromyalgia. However, the most effective therapist will be you,
yourself.
How can I treat my own fibromyalgia?
It is worth facing up to the fact that fibromyalgia can be severe, and
may last for several years. The good news is that many people have
learnt to control their condition so that they can continue to live
their lives enjoyably. People with fibromyalgia tell us that the
following advice does work and will help if you persevere.
Learn more about fibromyalgia (from this booklet and from other
sources) and find out if there is a local support group in your area.
Sharing the frustration of having this condition and knowing that other
people out there have similar problems can help some people enormously.
Ask your family to read this booklet and, if you want to, encourage
them to discuss your condition with you. Your illness will be affecting
their lives as well and they will need to know how and when to help
you.
Try the medication your doctor has to offer and then decide if you want
to continue taking it.
Don't drink alcohol, tea or coffee late at night, as these may disturb
your sleep. Relaxation and gentle exercise can help you sleep.
Learn to take time out for yourself. Reduce muscle tension. Learn to
relax your mind and your muscles. Playing music or an audio tape about
relaxation techniques can also help.
Find more effective ways of communicating feelings such as anger.
Counselling or cognitive behavioural therapy may help and your GP may
be able to refer you.
Try to sort out any unhappiness or difficulties at home or at work.
Eat healthily and keep your weight down.
What about exercise?
Research has shown that aerobic exercise improves fitness and reduces
pain and fatigue in people with fibromyalgia. This needn't mean joining
an 'aerobics' class (unless you want to). Aerobic exercise means
increasing the circulation of oxygen through the blood, so any brisk
exercise which gets you breathing heavily and your heart beating faster
can be aerobic.
Swimming is one of the best forms of exercise for fibromyalgia. Many
people who have not learned to swim find the effort to do so is well
worthwhile.
Try different activities to find out what helps you and gradually try
to do more each day, pacing yourself and gradually increasing your
physical activity. You must be prepared for setbacks, and for the fact
that activity may cause pain initially. Remember too that what helps
one person with fibromyalgia may not work so well for another.
Don't be overambitious about your progress. Slow and steady is better.
If you feel that walking down the road is more than you can manage,
start by counting the houses you pass each day and after some time you
will find you're counting the streets. If you go swimming (and warmer
water is more soothing), start just by standing and moving your arms
and legs against the resistance of the water, then go on to lengths,
and eventually you could be doing the sort of exercise you used to do.
You must expect exercise to be painful initially and you may also feel
tired. Build up your exercise at a rate you can cope with. Start gently
and build up to at least 3 hours of exercise each week. It is often
better to do 10 minutes and have a break than to do an hour all in one
go. If pain and tiredness increase a lot, then don't do quite so much
the next day.
Exercising progressively will improve your fitness, flexibility and
stamina. Gradually your muscles will become stronger and there will be
more muscle fibres to move your limbs smoothly and avoid jarring of
tendons and ligaments. Exercise also promotes sleep and improves your
sense of well-being.
Other forms of treatment
No particular diet has been shown to help fibromyalgia, but it is
sensible to lose excess weight and to avoid drinking too much coffee
and tea. Controlling your diet helps you feel in control of your body.
Treatments like massage, acupuncture, physiotherapy, and manipulation
from a chiropractor or osteopath can all soothe pain and improve
morale, but the benefits may not be long-lasting. Only you can decide
whether the benefits are worth the time and expense.
Exercise, sound sleep and dealing with physical or mental stress are
the keys to reducing the pain and fatigue of fibromyalgia. Going to
work can help. Until research provides us with better answers you
should aim for self-reliance.
Glossary
Cognitive behavioural therapy - a psychological treatment based on
the assumption that most of a person's thought patterns and his/her
emotional and behavioural reactions are learned and can therefore be
changed. The therapy usually focuses on the person's present
difficulties rather than the past. The aim is to help the individual to
learn more positive thought processes and reactions.
Electroencephalography (EEG) - a technique for recording the
electrical activity from different parts of the brain.
Ligaments - tough, fibrous bands anchoring the bones on either side
of a joint and holding the joint together.
Non-steroidal anti-inflammatory drugs (NSAIDs) - a large family of
drugs prescribed for different kinds of arthritis, which reduce
inflammation and control pain, swelling and stiffness (see arc leaflet
'Non-Steroidal Anti-Inflammatory Drugs').
Rapid eye movement (REM) sleep - light sleep during which brain
activity is increased and the eyes move very quickly behind the
eyelids. It is thought that most dreaming occurs during REM sleep. A
normal sleep pattern consists of several cycles of REM sleep and
deeper, more restful sleep, with REM sleep making up about 25% of the
total sleeping time. Too much REM sleep can lead to waking feeling
unrefreshed.
Tendons - strong fibrous bands or cords that anchor muscles to bone.
Further reading
Living with Fibromyalgia by Christine Craggs-Hinton. Sheldon Press
2000. 159 pages. ISBN 0859698319.
Inside Fibromyalgia by Mark Pellegrino. Anadem Publishing 2001. 348
pages. ISBN 1890018368.
Useful addresses
The Arthritis Research Campaign (arc)
PO Box 177
Chesterfield
Derbyshire S41 7TQ
Phone: 0870 850 5000
www.arc.org.uk
As well as funding research, we produce a range of free information
booklets and leaflets. Please see the list of titles at the back of
this booklet.
Arthritis Care
18 Stephenson Way
London NW1 2HD
Phone : 020 7380 6500
Helplines: 020 7380 6555 (10am-4pm Mon-Fri)
or freephone: 0808 800 4050 (12pm-4pm Mon-Fri)
www.arthritiscare.org.uk
Offers self-help support, a helpline service (on both numbers above),
and a range of leaflets on arthritis.
Fibromyalgia Association UK
PO Box 206
Stourbridge
West Midlands DY9 8YL
Helpline: 0870 220 1232 (10am-4pm Mon-Fri)
www.fibromyalgia-associationuk.org
STIFF(UK)
PO Box 1484
Newcastle-under-Lyme
Staffs ST5 7UZ
Phone: 01782 562366 (as a call-back service 11am-4pm)
www.stiffuk.org
© Arthritis Research Campaign 2004 6013/FIBRO/04-1*
A team of people contributed to this publication. The original text was
written by an expert in the subject. It was assessed at draft stage by
doctors, allied health professionals, an education specialist and
people with arthritis. A non-medical editor rewrote the text to make it
easy to understand and an arc medical editor is responsible for the
content overall.
This publication has been made possible because of voluntary donations
given to the Arthritis Research Campaign. Printed copies can be ordered
on this web site or by writing to arc Trading Ltd, James Nicolson Link,
Clifton Moor, York YO30 4XX, United Kingdom.