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FIBROMYALGIA - a patient's guide
Dr Susan Smith - Family Doctor
What is it?
Fibromyalgia is a condition that affects between one and
three percent of the population throughout the world, most
of whom are female. It is most commonly diagnosed in the
30-45 year old age group, but is found at all ages, from
young children (often diagnosed as growing pain) to people
over 80. In many cases, people have had low grade fibromyalgia
for many years.
Fibromyalgia has had many names in its history, but by
looking at descriptions of illnesses it has been around
for years (it was first described in the 1800s).
The most common symptoms are pain in all areas of the
body (but not necessarily equal in all), disturbance of
sleep and tiredness. Many people have additional symptoms.
In about 20% of cases, fibromyalgia can be linked to an
event such as trauma or a virus.
Although many theories exist about the cause of fibromyalgia,
none have been proved. It is becoming apparent that the
abnormality involves more than the muscles, it also involves
the central nervous system and the brain. It involves the
way pain is handled by the brain, meaning that even sensations
such as wind on skin are perceived as unpleasant or even
painful.
A condition that can be present with fibromyalgia, or
present without it is MPS or Myofascial Pain Syndrome. In
this condition pain is centred in the muscles, people have
trigger points not tender points. Trigger points are places
on muscle,bone, fat, tendons & facsia and tendons that when
pressed cause pain to radiate in predicable patterns (as
described in Travell and Simon's Trigger Point Manuals).
MPS frequently follows trauma, injury, and overuse injuries
(e.g. persistent shoulders forward posture). If not addressed
early or if the initial "insult" to the system was widespread
the myofascial pain can spread from being localised to generalised.
Initially these conditions were thought to be the same,
however they are not, but can be found together. Because
of the initial link, a lot of information on myofascial
pain and fibromyalgia is often found together.
How do I know I've got it?
There is no specific test for fibromyalgia, although investigators
are exploring many paths. In the past, in order to study
fibromyalgia, the following criteria were set up:
Normal blood tests - excluding other pathology.
Chronic fatigue: severity may vary to extreme.
Non-restorative sleep.
Axial skeletal pain (cervical pain, anterior chest or
thoracic pain, low back pain).
Tender points. 11 out of 18 points painful to light touch
(fingernail just blanching). These are specific points that
are found in all 4 regions of the body (above and below
the waist, left and right side). The classical points are
in occiput muscle insertions, low cervical, trapezius, supraspinatus,
muscles (specific places in each). Second rib, lateral epicondyles,
gluteal, greater trochanter, knee (again in specific places).
However, it is important to realise that everyone can
have good and bad days. On some days more symptoms my be
present than others. A period of increased symptoms is known
as Flare.
Although tender points are part of the way of diagnosing
fibromyalgia, the primary problem with fibromyalgia is not
in the muscles, but at a more basic level (metabolic meaning
at the level of how cells work and send messages to each
other, much research is still to be done (and being done).
Pain handling by the brain is the fundamental in fibromyalgia,
but there's no specific test or sign for this.
Not surprisingly with this, some people also become depressed,
and may also require treatment for this. Another increasingly
recognised phenomena is that of fibro-fog (fuzziness in
thought, forgetfulness, short-term memory seems to go to
pieces).
What can be done?
The most important step in rehabilitation and management
of the condition is to take control and responsibility,
and to be actively involved in your rehabilitation. It is
important to build a team around you, who are people you
trust and can talk to, both "medical" and non-medical, namely
support groups, friends, maintaining where you can a life
not just focused on this problem (this can be very hard
at times especially when your energy levels are in your
boots).
Fibromyalgia is by definition a non-progressive condition,
however many, if not all, people can feel their symptoms
increasing at times. This especially happens when factors
that are perpetuating it are not addressed. A list of these
varies from person to person but can include:
Reactive hypoglycaemia
Not taking or getting adequate breaks/rests
Posture/movement patterns
Work habits
Stress
Exercise
Note: exercise needs to be carefully and slowly introduced.
For example, starting with 5 minutes per day and increasing
slowly. Non-repetitive, low intensity and no weights at
early stages. Pain that persists 5 minutes after exercise
is an indication that too much has been tried.
Medication can be helpful in addressing poor sleep and
a variety can be tried. Two in particular are better at
restoring more stage 4 sleep which is particularly deficient
in fibromyalgia, these are amitriptyline and Benadryl. However
some people will not tolerate these and others may need
to be trailed. Benzodiazepines are often counterproductive,
and should be avoided if possible.
Pain relief can be difficult to sort out as fibromyalgia
is not an inflammatory condition. Anti-inflammatories are
not required for this effect, but may be used for their
analgesic properties (though they may be associated with
more side effects than paracetamol or paracetamol combinations
such as paracetamol and codeine). Some patients may require
stronger analgesia, such as Tramal, a drug similar in action
to morphine but without the adverse effects. The important
thing with pain relief is that it be regularly taken, as
pain is easier to manage and control with lower doses of
medication if it is taken regularly.
Other medications that people find helpful are those to
control other perpetuating factors. For example, nasal steroids
for sinus disease.
Other perpetuating and associated factors include arthritis,
carpal tunnel syndrome, chronic fatigue immune deficiency
syndrome, depression, diabetes mellitus, HIV & AIDS, hypoglycaemia,
hypothyroidism, hypermobility of joints, lupus myositis,
systemic lupus erythematous, multiple chemical sensitivities,
multiple sclerosis, post polio syndrome, raynauds phenomenon,
reflex sympathetic dystrophy syndrome, seasonal affective
disorder, tempomandibular joint problems, yeast infections,
vulvodynia, posture, breathing pattern (not a complete list
but a start).
Non-drug treatments include:
Exercise (which needs to be very carefully prescribed
and monitored)
Addressing posture, and strengthening of muscles (very
carefully, not work hardening)
Physical therapy (especially by those trained in myofascial
release techniques. Also helpful are local heat, massage,
ultrasound and other rehabilitative techniques)
Acupuncture
Nutrition
Some people find working with medical or Chinese herbalists
or naturopaths helpful.
Working with a psychologist, occupational therapist, or
pain clinic to develop skills (e.g. relaxation, biofeedback,
and others) to enable you to modulate and learn to cope
with the pain)
TENS
Your primary care practitioner or local support group
can give you names of practitioners in your area.
Unfortunately surgery is not a cure for fibromyalgia.
If any surgery is required for other conditions, it is important
that both the surgeons and anaesthetists know so that optimal
attention can be paid (especially to patients position in
operating theatre and post-operative analgesia) so as not
to exacerbate conditions (especially for those with MPS
or FMS/MRS).
Controversies in treatment
Many treatments at this stage are still anecdotal. Scientific
thought has suggested treatments that may help, but it is
difficult to do randomised controlled double-blind trials
(the optimal kind of medical evidence) on these.
For example, Dr P. St Amand-Guiafenesin, whose protocol
can be accessed. The role of nutritional supplements (e.g.
chromium).
Some with the reactive hypoglycaemia find The Zone diet
by Dr Barry Sears helpful, others find looking at the glycaemic
index of food helpful.
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