Some basics about fibromyalgia
Fibromyalgia is a chronic
disease characterized by diffuse pain or burning sensations from head to toe
accompanied by deep fatigue.
Etymologically, the term fibromyalgia consists
of “fibro” for fibrosis, “myo” formuscles and “pain” for
pain. This term would therefore indicate a painful fibrosis of the muscles,
however fibrosis is not a lesion found in this disease.
Recognized in 1992 by the World Health Organization, it is a common disease in medical practice. It was also called: idiopathic polyalgic syndrome diffuse (SPID), chronic muscular rheumatism (1901), psychogenic rheumatism (1960), fibrosite (1983), and rheumatism of the soft tissues… Fibromyalgia is distinguished from the chronic fatigue syndrome with which it shares several signs.
How many people have the disease?
Affecting 2 to 5% of the
population, fibromyalgia is therefore not a rare disease. Its frequency varies
according to the population considered.
Who can get it?
Mainly women between 30 and 50,
in the proportion of 4 women for a man. Fibromyalgia has also been diagnosed in
children.
Is it present everywhere in the world?
Worldwide, there are wide
disparities in the distribution of fibromyalgia. Western countries are the most
affected. The disease remains anecdotal in the third world. It is also an urban
disease that is encountered less often in rural areas. We cannot exclude the
possibility that the diagnosis will be made less often in certain regions where
the number of people affected seems low.
What is it due to?
The cause of fibromyalgia is unknown. It is known that there is an abnormality in the pain response which is increased. There is an awareness of the central nervous system, attested by functional imaging tests. However, it is not known whether this awareness is the cause or the consequence of the disease. Many factors have been successively incriminated. The finding that many cases of fibromyalgia occurred after a violent emotional shock, a significant trauma (traffic accidents with whiplash) for example), or a viral disease, has raised in turn the question of the impact of these events in the onset of the disease.
Furthermore, the association of pain with sleep disturbances and depression have led to the possibility of a deficiency in neurohormones, especially serotonin. Neurohormones are substances present in minute quantities in the nervous system involved in functions such as sleep, mood and pain but also in various sensory functions, motor and cognitive. These imbalances are probably at the origin of the importance of pain experienced when there is no damage to organs or tissues or any biochemical disorder that can cause them. Finally, the existence of “mother-daughter” cases could suggest the intervention of other factors not yet identified.
Is it contagious?
It is absolutely not
contagious.
What are its manifestations?
Before the installation of
fibromyalgia, there would be a long (or very long) period of “Warning
signs”. Very unspecific, these signs are often found only when afterwards,
once the diagnosis of fibromyalgia has been made. It is essentially about:
1 – abnormal fatigue on
exertion
2 – muscle discomfort, body
aches, tingling, fatigue
3 – tedious standing position
4 – intolerance to cold, heat
5 – various digestive
disorders (stomach pain, irritable bowel)
6 – irritable bladder
7 – sleeping troubles
Once declared, fibromyalgia is characterized by diffuse pain, fatigue intense, sleep disturbances, associated with different manifestations of gait psychosomatic.
Pain
This is the main symptom. Always present, it mainly affects regions close to the spine: the nape of the neck, the shoulders, the inter-scapular region (between the 2 shoulders), shoulder blades, lower back, hips.
It can also reach knees, soles, glutes and hands with swelling, the face with a feeling of tightness or having toothache. The sick complain of having “sore everywhere”. This pain varies depending on the time of day, the stress level and physical activity. It is associated with diffuse stiffness and is characterized by specific pain points sensitive to touch. Dull or sometimes acute (see both), type of burns, stings, tingling or muscle numbness, it is described differently depending on the person.
It can also evolve from one type of pain to another and from one location to another or gradually generalize in the same person. It can be painful to the point of hindering the accomplishment of daily gestures. The sensitive points, on the other hand, sometimes very painful on pressure, interest well defined areas which allow to evoke the diagnosis
Tiredness (asthenia)
With pain, this is the most constant symptom. Often very intense in the morning, it can occur at the slightest effort and become debilitating. It’s more of a “feeling of total loss of strength “, of fatigue which has social and professional repercussions can be considerable. Standing still is particularly painful, a sign particularly characteristic. The psychological impact, on a person who has always been active and “good living”, can be very important.
Sleep disturbances
The main characteristic of sleep in fibromyalgia is that it is little or not repairing. Patient wakes up as tired, if not more, than when layer. Most often sleep is “restless” and responds only slightly to the various treatments established. Like pain, sleep disturbances do not improve over time without treatment.
Psychological disturbances
This is mainly about anxiety and a depressed state. Pessimism and catastrophism y are often associated. Here again the question arises of the chronology of the disorders: is the depressive syndrome prior to fibromyalgia or reactive, secondary to wandering and the ineffectiveness of the different treatments? Patients often attach their anxiety disorder that accompanies their incomprehensible state of health. It should be noted that a large number of people were very active and dynamic before the disease, without showing any signs of depression. Fibromyalgia and depression can be considered as two different diseases, albeit related and often associated.
Other disorders
A set of apparently disparate
disorders and signs are reported by ill. If they help bring the diagnosis to
light, they can also bring the sick to different consultations.
- migraine and tension headache
- difficulty concentrating and memory impairment
- hypersensitivity to noise, light, and odors
- intestinal transit disorders, such as diarrhea or constipation, or
alternation of both (which can wrongly evoke irritable bowel syndrome).
- urinary problems (frequent urination) or period pains (dysmenorrhea)
are also observed.
- thermoregulation disorders: abnormal intolerance to cold and heat.
- restless legs syndrome with nocturnal impatience is also sometimes associated.
To varying degrees, some
signs of Gougerot-Sjögren Dry Syndrome (dry eyes, dry mouth, dry skin …) can
appear at the same time as fibromyalgia. It is easy to see, given the multiple
combinations that these symptoms can take, that patients consult as well in
gastroenterology, psychiatry, rheumatology as in internal medicine
How to explain the symptoms?
The origin of the pain is
unknown. The various mechanisms mentioned did not allow to establish precisely
the causes of this rather singular painful model. It could be an abnormal
perception of pain that makes stimulation normally painless either perceived as
painful (allodynia) or an abnormal perception of the intensity of pain that
makes pain of low intensity perceived as very painful (Hyperalgesia).
– Is the pain primarily muscle?
To date, no objective
muscular anomaly has allowed us to accept this hypothesis.
– Is the pain of psychogenic origin?
For this theory, we evoke the
fact that there are sometimes, in fibromyalgia families, some known cases of
depression. Occasional regression of symptoms under antidepressants and the
frequent association of fibromyalgia with other well-known diseases psychosomatic
mechanism (functional colopathy for example) would also be in favor of this
assumption. These elements are, however, inconsistent and do not support the
thesis of psychosomatic origin. In addition, the favorable action of
antidepressants may be due to one of the pharmacological properties of these
drugs, which also have an action on pain in non-depressed patients.
– Is there an involvement of neuromediators?
Serotonin (or 5
hydroxytryptophan) is a substance produced by neurons
(neuromediator) having a
“pain-relieving” action. It is also involved in the regulation of
sleep and mood. Its role has been highlighted in certain disorders psychiatric
(anxiety and depression in particular) and in migraine. Several works have
shown a decrease in the blood level of fibromyalgia sufferers, without it being
necessarily associated with depression. We have also shown an increase substance P, neuromediator of pain.
– Or an involvement of the endocrine system?
In fibromyalgia, despite
maintaining a normal hormonal stress response, sometimes notes a disruption of
the secretion of hormones (corticoids) by the adrenal glands (glands located
above the kidneys) and a decrease in the level of hormone growth. This can be
the cause of fatigue and poor exercise tolerance. These abnormalities can also
be cause or consequence of the disorder.
What is its evolution?
Fibromyalgia is a condition
that develops over many years. There are great variability of manifestations
and their evolution over time is different from a person to the other.
– Quality of life: the fact
that the demonstrations are very non-specific means that there are almost always
a diagnostic wandering (up to 18 years in some studies) which can to be very
discouraging. In addition, pain and fatigue do not always respond well different
treatments. A state of depression, or even a depressive state, if they can be absent
at the start, can also gradually settle in or worsen. All of this contributes
to the overall deterioration in the quality of life for people with
fibromyalgia. That said, the comfort found among those around them and others
confronted with the illness is a great help not to get discouraged and try the
different options offered by the doctor. Fighting isolation remains a
fundamental asset in this disease. Fibromyalgia is not life threatening because
it does not compromise the organs vital.
– Autonomy: The pains,
sometimes rebellious to usual treatments and great tiredness gradually hinder
physical activity which is, therefore, gradually reduced. In the most severe
cases, the reduction in activity in turn affects the ability of the patient, who
sometimes becomes unable to meet the most basic needs. Deconditioning with
effort (the less the subject does, the less he can do) is proven by oxygen
consumption tests. However fibromyalgia does not lead to paralysis, neither in
the wheelchair, nor in the loss of intellectual capacity, and all cases are not
as severe.
– Severity: In a certain
number of cases fibromyalgia becomes debilitating without it
there are visible lesions.
Fatigue for less and less effort and the anxiety that accompanies this state
makes it very serious. However, you should know that not all patients reach
this state
The diagnosis
How is fibromyalgia diagnosed?
This disease has long been overlooked. It is still refuted by many doctors who see in the association of different symptoms only an expression of the wide range psychosomatic conditions. Since 1992 it has been recognized by the WHO as a rheumatic disease (rheumatism unspecified).
The main difficulty lies in
the absence of any biological, radiological anomaly or detectable histology. We
still often speak of “invisible disease” or pain without organic. The
diagnostic criteria are clinical and are currently limited to those established
in 1990 by the American College of Rheumatology (CAR). These combine with the
table of diffuse chronic pain (as defined below), tenderness to palpate minus
11 of the 18 points previously defined. Chronic pain is defined by a course of
development of at least 3 months.
The pain is diffuse if it
involves the right and left sides of the body and sits above and below the
waist. Skeletal pain from head to toe must also be present. This purely
clinical diagnosis will only be made by the doctor after elimination of all other
organic cause of symptoms (myopathy, chronic rheumatism of another nature, myositis
…). In addition, he will have to distinguish fibromyalgia from chronic
fatigue syndrome which is a very similar disease. Certain forms of fibromyalgia
are associated with other diseases, particularly inflammatory rheumatism. This
is the case for example of rheumatoid arthritis where, despite response to
treatment, patient continues to experience pain from fibromyalgia secondary.
The pressure sensitive points
are as follows: suboccipital, lower cervical, trapezius, at the level of the
scapula, the second ribs (at the insertion of the rib on the sternum), epicondyles
(elbows), glutes, large trochanters (femurs) and knees. Sometimes people who
suffer from fibromyalgia don’t notice the extreme sensitivity of these points
that when a doctor presses in these places (see figure). These criteria for
diagnosing fibromyalgia are widely criticized because they are too limited and
too reducers. Many symptoms, common in this disease, are not taken care of account.
This is the case for headaches (headache), fatigue with the slightest effort, feelings
of ants in the body and extreme intolerance of the cold at the extremities.
Gynecological pain is also ignored, as well as intolerance to pressures on all
muscle masses, intolerance to hard seats, hypersensitivity feet, standing very
painful. In addition, the evaluation of the different symptoms uses measurement
scales that are often inappropriate for fibromyalgia because they are
sophisticated for other diseases. l What are the complementary exams?
What will they serve? Biological,
radiological, and possibly hormonal examinations help to eliminate certain
diagnoses (this is called differential diagnosis).
Can we confuse this disease
with others? Which ones? How to make the difference ?
Yes, we may have to eliminate
different diseases such as adrenal insufficiency, in which the adrenal cortex
(which normally secrete glucocorticoids) no longer perform their function.
Certain anxiety, depressive states, so-called disorders “Thymics”
where mood swings are frequent can also resemble Fibromyalgia. In addition, all
muscle, joint and tendon pain (chronic arthritis, systemic lupus erythematosus,
polymyositis, GougerotSjögren syndrome, etc.) can be confused with
fibromyalgia. Gynecological pain, menstrual pain, migraine are common in women
and do not always think of another possible cause. Irritable bowel, pelvic pain
caused by inflammation of the bladder (cystitis), personality disorders,
hypochondriac or simulator, hidden drug use, and chronic fatigue syndrome are often
discussed well before concluding at the diagnosis of fibromyalgia.
Can we detect this disease in
people at risk before it happens?
There is no obvious risk
factor apart from the notion of painful childhood (violence, abandonment,
sexual assault) sometimes found in patients and the concept of physical
(accident, fall, surgery, etc.) or mental (shock, bereavement, serious event)
stress family or professional…) in the immediate history. In some cases, none
of these factors are not found. Genetic aspects
What are the risks of
transmission to children?
No risk of transmission has
been demonstrated even if mother-daughter cases exist. l What are the risks for
other family members? There does not appear to be any particular risk to other
family members, even if the occurrence of more than one case in the same family
has been very rarely reported.
Treatment, care &
prevention
Is there treatment for
fibromyalgia?
The origin of the pain in
fibromyalgia is not known. Therefore, there does not exist, at currently, a
treatment that will cure the disease permanently. Treatment is basically aimed
at relieving the symptoms that vary a lot from a person to the other. It uses
physical rehabilitation and various drug treatments. Psychological care and
support are also very important. Physical rehabilitation or reactivation, which
must be particularly emphasized consists of a progressive re-training with the
effort by fractional physical exercises and “soft” (medium intensity)
where the notion of “pleasure” must remain present and the regularity
of putting. A supervised aerobic exercise program would benefit improvement in
physical capacity and in symptom improvement (reduction of pain and pressure
point sensitivity). Stretching (postural stretching), water aerobics and swimming
in a pool (at 28 ° minimum) often provides real relief. More simply and in an
accessible manner to each person with fibromyalgia, walking daily is advised.
Of progressive duration, as far as the patient’s condition allows without going
as far as painful fatigue, it can be beneficial.
Medication
Among the painkillers (pain
relievers) used in fibromyalgia, tramadol hydrochloride is the only one to have
shown an action against pain. Nonsteroidal anti-inflammatory drugs are not very
effective, and corticosteroids are contraindicated. The Morphine derivatives
are much discussed because they have adverse effects. In all cases, be aware
that the response of pain to different drugs is variable from one patient to
another. The doctor may need to modify the treatment depending on this answer.
Anticonvulsants (gabapentin for example) are very often prescribed to decrease
the pain of fibromyalgia patients. The use of anesthetics (lidocaine, ketamine)
has been proposed, but it remains very limited due to the side effects that can
only be administered in intensive care settings. They cannot be considered as a
treatment for disease.
Moderate dose antidepressants
have a double action: on pain and on depressive syndrome. Indeed, they can have
an action on pain even in the absence of depressive syndrome. The most used is
still amitriptyline which would give the best results. Tolerance to this drug
is often reduced in fibromyalgia sufferers who have hyperactivity to stress,
anxiety or depression. Hypnotics (sleeping pills), mainly benzodiazepines
(clonazepam, bromazepam, and alprazolam), which act against anxiety and relaxes
the muscles have been indicated. However, they disrupt the architecture of deep
slow sleep which is already abnormal in fibromyalgia. Therefore, their use does
not seem desirable. However, clonazepan, when well tolerated and given at a
very low dose, may promote sleep in a number of fibromyalgia patients. A few
other substances have been tested without proven efficacy. It’s about acid malique,
growth hormone, 5 hydroxytryptophan, calcitonin, S-adenosyl methionine.
What benefits can be expected
from treatment?
Improvement in pain can be
seen although patients often complain of insufficient response to expected
results. Similarly, few results are noted for fatigue.
What are the risks of
treatment?
The risks vary greatly
depending on the drug used. The doctor will be able to adjust the doses to
allow the best effectiveness with the lowest risk of adverse effects. He never
interrupt or modify a treatment without medical advice.
What will be the consequences
of treatment for life daily ?
Whether in a pain center or
at home, the patient’s life must be organized around often numerous schedules and
methods of taking medication Treatment,
quite often partially effective, can help improve or safeguard the autonomy of
the person with fibromyalgia. In some cases unfortunately, it remains without
result. Hypnotics, morphine and even antidepressants, can decrease alertness. This
can affect the patient’s professional activity or even represent a danger for him
and his entourage (use of machines or driving of machines). In addition to the
impact of fatigue and pain on sex life, the drugs prescribed in fibromyalgia
act on the brain by modifying certain substances. called neurohormones or
endorphins. This contributes to impotence, frigidity or decreased sexual desire
that may occur.
Is psychological support
desirable?
Yes, psychological support
with the help of a psychotherapist is recommended. The use antidepressants and
the use of relaxation techniques may be indicated. Among psychological
disorders, catastrophism (everything is going badly, everything is going to go
even more wrong, I am alone and helpless, …) can be very important.
Information and support on the part of the family, the entourage and other
patients, through associations, are fundamental.
What are the other methods of
processing this sickness ?
In the absence of an
effective therapy proposed, fibromyalgia remains the breeding ground to
so-called alternative therapies which are generally very expensive. This is how
are proposed, biofeedback techniques, massage therapy, acupuncture,
phytotherapy and other therapies. Even if some improvement in the disorders can
be observed, it is necessary to know that no study has established their
effectiveness.
What can you do yourself to
heal?
The benefit of a healthy
lifestyle (adequate sleep, especially maintenance of physical activity regular
and suitable, balanced diet) is very important in fibromyalgia.
How to get followed?
Fibromyalgia comes under
rheumatology consultations but the use of pain centers is quite often
necessary. Depending on the treatments instituted, monitoring will be different
and the doctor remains the sole judge of the type and frequency of checks.
What information should be
known and communicated in case of emergency ?
It is necessary to report, in
any eventual emergency, the exact nature of the medications taken and their
dose. This avoids the administration of drugs whose combination is incompatible
and avoids accidental overdoses.
Can we prevent this disease?
No prevention is possible. To
live with l What are the consequences of the disease on life family,
professional, social, school, sport? Fibromyalgia is “invisible and
invincible” because it has no organic substratum detected to date nor
curative treatment. It is a chronic disease and, due to its long evolution, it
has its own psychological, social and family impact. Despite the significant
difficulties that the disease imposes on daily life, all people attacks do not
become dependent or invalid.
The patient reorganizes his
activities within the new limits which are dictated to him by the disease. He
can no longer “program” or “organize” his time except
according to possibilities and “the energy of the moment”. The
reorganization or even the reorientation of its activity professional, the
maintenance of physical activity, even reduced, are essential. Isolation and
psychological problems cause family problems due to the misunderstanding in
which these patients find themselves. Divorced status is significantly more common
than in the general population. Fatigue affects professional and social life.
The cessation of activity is enough common.
Outings and leisure are
gradually abandoned. The social circle of fibromyalgia sufferers is thus
reduced to isolation. Sometimes a vicious circle arises in which isolation,
causing a depressed state, leads to more isolation. That’s why family support,
meeting other patients and also psychological support are very important to
break this progression. Furthermore, the recognition of disability in
fibromyalgia sufferers is often rejected because the files are treated on a
case by case basis, fibromyalgia is not one of the diseases recognized as
disabling. Because in fibromyalgia there are no lesions visible, the
“medico-social” course of fibromyalgia sufferers is often very trying. Schooling:
When normal schooling becomes impossible due to high fatigue, special measures
can be put in place: correspondence courses or even home schooling.
Sport: Sport can and should
be maintained. The type of sporting activity is important. Violent sports,
significant efforts should be avoided. Only will be maintained regular,
moderate intensity exercise that will prevent muscle wasting that results from
inactivity and worsen fatigue. It seems that this is currently the most
promising approach, combined with gentle physiotherapy and stretching.
Where is the research at?
Fibromyalgia remains a
mystery as to its pathogenesis. Several avenues of research are explored: what
role does stress play? viruses ? genetic ? neurohormones? The effectiveness of
many drugs in fibromyalgia is evaluated.
Pregabalin, originally used to treat neuropathies and epilepsy, looks promising on the symptoms of fibromyalgia. Setrons, anti-emetic (anti-vomiting) drugs that inhibit serotonin receptors, have also been used with promising results by German doctors.
