For decades, patients with fibromyalgia have visited offices of different specialties seeking relief from their pain. Asked about the location of the pain, the answer was “ask me where it does not hurt”. The tests, however, revealed nothing: no muscle damage, no inflammation. The patient traveled from clinicians to rheumatologists until, finally, reaching a psychologist, sometimes convinced that the pain existed only in his imagination.
As the pains are usually muscular or localized in the joints, it was for a long time for rheumatologists to investigate them. However, studies indicate that this would be a neurological disease. The brain of those who have fibromyalgia would process the pain exaggeratedly. It is estimated that a pressure of up to four pounds does not cause pain in most people, but much less that is enough to trigger intense pain in those who have the disease.
“Since the 1980s there have been studies showing that patients with fibromyalgia had pain neurotransmitters, such as substance P (” pain “, in English), in greater numbers. From 2000 to now, with the advancement of neuroscience, it has become possible to show in exams this difference “, explains dr. Eduardo dos Santos Paiva, chair of the Pain, Fibromyalgia and Other Molecular Syndromes Commission of the Brazilian Society of Rheumatology.
SYMPTOMS AND DIAGNOSIS
It is possible to detect the exaggerated reaction of the brain to stimuli by means of a Functional Magnetic Resonance, but this is an extremely expensive and laborious examination and requires specialized and experienced professionals to be performed, which means that it is not applied routinely and is practically restricted to use in studies. Research usually relies heavily on the patient’s own report and tests to rule out diseases that may have similar symptoms, such as spondylitis , polymyalgia rheumatica, hypothyroidism and multiple myeloma , a type of cancer that affects more people over 65 years.
In general, the first sign of fibromyalgia is localized pain that persists and, over time, develops and spreads to become diffuse, resembling the pain that takes the whole body after a strong flu. Usually the pain arises for no reason, but can sometimes be unleashed by psychological, physical trauma, such as an injury caused by a car accident, or infections.
Until the 1990s, a map drawn up by 20 rheumatologists was used to test the patient’s sensitivity. The 18 points distributed by the body were the most cited by patients as painful sites. They are symmetrical bilaterally, and most are above the waist. Some of them, especially in the nape of the neck, in the scapulae and in the outside of the elbows, when they were pressed they caused shouts of pain.
Still, the pain of fibromyalgia is different from acute pains, such as those caused by a cut or a door that closes violently on a finger. The acute pain generates a physiological reaction, the person of yours, shouts. As for chronic pain, the person adapts and lives with her day in and day out. A fibromyalgic patient who wants to hide his condition can speak normally without showing that he is suffering. When he is accustomed to pain, then he lives his daily life apparently without feeling any discomfort, which motivates the disbelief of those who live with him.
It is understood that in order to have fibromyalgia, it is necessary to have pain throughout the body for more than three months, on most days throughout that period. “Pain points were used extensively during the 1990s. Nowadays, they still help, but they are not diagnostic-defining. There needs to be a host of other symptoms that encompass extreme tiredness, sleep disturbance, concentration and memory problems, “says Dr. Edward.
Among these symptoms, the role of fatigue in characterizing the disease is striking. It is part of the diagnostic process a questionnaire that aims to evaluate the impact of fatigue on the routine of the patient. He has to rank from 0 to 10 the level of difficulty he faced to perform certain tasks. And by the degree of requirement of the tasks, we can have an idea of how intense the lack of energy can be. After all, how can you get bored combing your hair?
It’s a different fatigue, it’s not just laziness. You wake up totally exhausted, with no desire to do things, “reports accountant Sonia Folador. Now 56, he was 45 when he began to feel fatigue, memory problems and widespread pain, more concentrated on the right side of his hip.
As with Sonia, the disease usually occurs in women between the ages of 30 and 55, although there are cases of older people, adolescents and even children affected, making up a contingent of approximately 5 million people in Brazil (about 2% to 3% of the population, a percentage close to what is estimated in the world).
There are ten times more women affected than men. According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases , between 80% and 90% of people with fibromyalgia are women. The machismo rooted in our culture proved to be very efficient in transforming a scientific fact into a characteristic inherent in the genre. If the patients are women, the pain is probably psychological, freshness, drama, PMS (Pre-Menstrual Tension) symptom, etc. And so, generations of women spent their lives resigned, with pain and other symptoms. “It’s not easy at first, we do not know what it is. Before it was all rheumatism, but the pain does not pass and then you live. After we actually find out, the treatment progresses, “says Sonia.
The link between fibromyalgia and the female sex may be in the serotonin, neurotransmitter that influences sleep, hormone production, heart rate and other important physiological functions. Women produce less serotonin, and therefore are more prone to problems such as depression, migraine and mood disorders, especially in the period of PMS. As the neurotransmitter also participates in pain processing, perhaps this is the explanation for the much larger number of female patients.
In addition to the strong relationship with females, the disease has close ties to depression. About 50% of the fibromyalgia patients also present this serious disorder, with one condition aggravating the other: pain and discredit lead to seclusion, worsening depression, which in turn intensifies pain – in a real, not psychological way.
As the pain of fibromyalgia does not have a definite origin, analgesics and anti-inflammatories do not help. The drugs that have some effect are those of the class of antidepressants and neuromodulators. However, some patients may view prescribing with suspicion because of the negative image that psychiatric illness has in our society. Those who have had to face unbelief until they reach the diagnosis may even express revolt, interpreting that the shadow of “psychological pain” is coming back and that they are being treated for some psychiatric disorder. In the case of fibromyalgia, however, such remedies are simply used to increase the amount of neurotransmitters that decrease pain.
Currently, the key word of treatment for fibromyalgia is physical activity. Even when the doctor decides to include some medication, it serves to allow the practice of exercises. It is common, for example, that patients sleep poorly. Some even sleep enough hours to replenish the energies, but still wake up tired (the so-called “non-healing sleep”).
In such a case, prescribing a medication to facilitate sleep obviously improves quality of life, but ultimately aims to make it more amenable to physical activity the next day. “The patient has difficulty understanding why he has so much pain and does not appear on any examination, so we have to give him the conditions to be active in the treatment,” explains Dr. Edward.
“I wake up and have some coffee without the urge to exercise, but I still change my clothes and go to the gym every day. I do pilates, stretching and swimming. I clearly see the difference when I do not. If I do not go, it seems that I’m all locked up, not wanting to do anything, “says Sonia.
Fibromyalgia is not considered a curable disease. There are cases in which the symptoms diminish considerably, almost disappearing, but there are others where it will be necessary to control for the whole life. Understanding this fact is fundamental to taking the treatment in the best way possible. Like the feedback that occurs fibromyalgia and depression, the symptoms of the disease bring a series of problems that accumulate and strengthen. Pain alters mood, which affects professional performance and social relationships, which increases stress, which is one of the triggers of pain and thus extends to infinity.
Patients do not have to worry about serious injuries such as deformities or limb paralysis. In addition, they need to have information about the disease and not be shaken if they still find professionals and people who discredit them. Maintained the treatment, the perspective is that the pain regresses at the cost of a routine that is recommended for the health of any human being: regular physical activity.