In addition to physical suffering, patients with fibromyalgia face the distrust of relatives and even health professionals

The eyebrows, the red of the robes, the flowers in the hair and the experience of pain are inseparable marks of Frida Kahlo. His self-portrait with nails piercing the entire body,  The broken column , one of his most famous paintings, is also an indication that the Mexican artist suffered from fibromyalgia. In an attempt to explain the reasons for the chronic pain that accompanied her for years, some authors suggest that Frida suffered from post-traumatic fibromyalgia, characterized by persistent generalized pain, chronic fatigue, sleep disorders and pain points in well-defined anatomical regions. This concept of fibromyalgia, as currently understood, was probably not widespread among 20th century physicians.

In her self-portrait ‘The Broken Column’ of 1944, Mexican artist Frida Kahlo expresses her pain through nails scattered all over her body (photo: Reproduction Internet)

When Frida painted  The Broken Column , in 1944, the association of painful stitches with rheumatism had already been cited for at least 120 years. In 1824, the Scottish surgeon William Balfour was the first to describe patients with muscle points hypersensitive to palpation and likely to trigger radiated pain. Fibromyalgia is not a new disease, as many imagine. Historically, it has been presented with different names: fibrositis (1904), myofibrositis (1929), fibrositic syndrome (1952), fibromyalgia syndrome and, finally, fibromyalgia (1981). Named in 1992, it was recognized by the World Health Organization (WHO) as a rheumatic disease. But even so long after, it is still being questioned by society, the relatives of the patients and even some health professionals.

The rheumatologist Luiz Severiano Ribeiro, of the Rheumatology Service of the Institute of Pensioners of the State of Minas Gerais (Ipsemg), recalls a time when the patients themselves did not believe in the diagnosis, even if he justified the pain, which they considered “inexplicable “, Size was his nuisance. “They came complaining of pain and fatigue, but they did not take the diagnosis seriously. First, they did not understand the name. In addition, the clinical exams did not indicate anything and we prescribe antidepressive. They thought fibromyalgia was crazy, and when they found another doctor and told them what the rheumatologist had said, they heard that they really needed to be a psychiatrist. This was the classic trajectory of a fibromyalgia 20 years ago. They would jump from one doctor to another without an explanation, and when they received the diagnosis, they did not believe. ”

 

ASSOCIATION For fibromyalgia, people more sensitive to pain than the general population, such distrust and disbelief also hurt. The retired Sandra Santos, 53, was diagnosed in 2005 and, in a positive attitude toward suffering, founded the Brazilian Association of Fibromyalgia (Abrafibro) with other patients. To treat a spinal problem, she was referred to a treatment she could not carry on. “I walked in and out of a wheelchair. I insisted until the eighth session, but the attending physician found it strange that my pain threshold was so small. The accompanying specialist suspected that it might be fibromyalgia and, on the clinical examination, identified that I had 11 out of 18 pain points. She had fibromyalgia, but she was probably being masked by the spine problem, “recalls Sandra.

INCREASED SENSITIVITY

In recent years, there has been a breakthrough in understanding fibromyalgia, which is considered a syndrome because it encompasses a number of clinical manifestations such as pain, fatigue, sleep disorder. According to Eduardo Paiva, head of the Pain and Fibromyalgia Commission of the Brazilian Society of Rheumatology, an assistant professor at the Federal University of Paraná (UFPR) and head of the Fibromyalgia Outpatient Clinic of the Hospital das Clínicas of UFPR, it is increasingly established that fibromyalgia is a problem of nervous system sensitization, which would be programmed to feel more pain. Exams such as functional magnetic resonance, capable of showing real-time brain functioning, reveal the amplified intensity of pain as reported by patients. “The nervous system can be modulated, amplified. In fibromyalgia this modulation is for more.

 

know more

  • Fibromyalgia affects 3% of the Brazilian population, but has a difficult diagnosis
  • Research suggests new treatments for chronic pain that affects 30% of Westerners
  • Therapy Can Block Chronic Pain
  • Chronic pain may have natural origin
  • Research strengthens relationship between chronic pain and depression
  • For each type of pain there is an adequate technique: know the options in physical therapy

People suffering from fibromyalgia have a lowered pain threshold. Stimuli that normally do not cause pain in other people, such as affection, can be painful for fibromyalgia. According to Roberto Heymann, a rheumatologist at Albert Einstein Hospital and a professor at the Federal University of São Paulo (Unifesp), this is due to a breakdown of the mechanisms that control pain in the central nervous system. “The causes of such inadequate control of pain mechanisms are unknown. It is believed that a genetic predisposition that, when exposed to some environmental factors, generates fibromyalgia. What we do know is that the mechanisms of the central nervous system associated with the sensation and transmission of pain are exacerbated and the mechanisms that should inhibit or filter these sensations are diminished,

In addition, there are external factors that influence the transmission and the sensation of pain. The emotional state and the cold are some of them. Depression, for example, may be one of the consequences of fibromyggia, as in many other chronic diseases, but also the trigger that was lacking to trigger a fibromyalgia picture in the genetically predisposed person. According to Heymann, emotional health has a direct influence on all diseases, not just fibromyalgia. “How many people have peaks of hypertension because they became nervous and anxious, for example? But in fibromyalgia, because the pain is subjective, the influence that emotion exerts on its intensity often generates prejudice. The fact is that a depressed person actually feels more pain than the normal population because their pain sensitivity is exacerbated. In this way,

 

Any picture of chronic pain also impairs sleep, as the patient often wakes up from pain. But in fibromyalgia hormonal changes and neurotransmitters are also responsible for the superficiality of sleep and the feeling of fatigue. Most people who suffer from fibromyalgia, therefore, have a superficial and light sleep in which they do not rest, and consequently they become fatigued and without energy. Generalized pain, difficulty sleeping or awakening with tiredness and feeling tired or fatigued throughout the day are the main symptoms of the disease. At age 84, Maria Joana das Mercês doubted she had actually slept at night, or if it was a dream. Attending the group of education of the fibromyalgia patient, carried out for more than 20 years in Ipsemg, today she knows how to deal better with the symptoms, but they did not stop bothering. “I sleep and wake up thinking if I really slept. And the pain is unbearable. No one deserves it, “he laments.

 

Check out the video of patients reporting on fibromyalgia:

 

THE BROKEN COLUMN
In the article Art and pain in Frida Kahlo, from 2014, Rodrigo Siqueira Batista and coauthors seek in the biography and work of the Mexican artist, intersections between his art and experiences of pain. For the authors, in The Broken Column, in which she portrays herself using the steel vest to control the pain picture, the nails embedded in her naked body translate an endless martyrdom. “Frida’s body is divided, bleeding, nailed and isolated, so it transpires the physical torment that never left her throughout her life.” In the 2003 film Frida, in one of the dialogues, she goes on to say: “I do not remember as it was before the pain. ” Solitude, metaphorized by the desert landscape, reinforces suffering. The open body is a reference to the various surgeries you have undergone to repair the spine without improving your complaints. But the nails implanted suggest the typical painful points of fibromyalgia. For the researchers, this hypothesis would explain the chronic pain and the deep fatigue experienced by the painter.

 

Julia de Oliveira Fonseca, medical student at the Federal University of Viçosa (UFV) and Rodrigo Siqueira-Batista, physician, philosopher and professor at the Department of Medicine and Nursing at UFV

LIFE AND ART

 

The image of Frida Kahlo is very much linked to suffering. What were your main sources of pain? Poliomyelitis and the accident are unquestionable, but she was diagnosed with fibromyalgia or was this finding after her death and because of a greater knowledge of the syndrome?

The painter Frida Kahlo suffered significant pains, both physical (organic) and emotional. In fact, one of the artist’s greatest sadness is linked to the relationship with her companion, the painter Diego Rivera, for whom she was deeply in love. The couple had a great affection for each other; however, lived equally amidst fights and betrayals, which made Frida very sad. One of these quarrels was the result of Diego’s betrayal with Frida’s sister, Adriana. Frida also suffered from the fact that she could not conceive or suffer spontaneous abortions when gestation occurred. A famous painting, called Henry Ford Hospital (La cama volar), portrays, in a very remarkable and strong way, an episode in which Frida needed hospitalization due to an abortion. In life there are no reports that she was diagnosed with fibromyalgia, even though, at the time, the name “fibromyalgia” did not exist (this is much later, going back to the 1970s). This diagnostic hypothesis was raised after his death, and is suggested by his clinical picture of chronic pain, as proposed in the article Fibromyalgia in Frida Kahlo’s life and art (article by Manuel Martinez-Lavín, Mary-Carmen Amigo, Javier Coindreau and Juan Canoso published in journal Arthritis & Rheumatism, March 2000).

The article  Art and pain in Frida Kahlo *, talks about a possible relation of the nails by the body in The broken column with the painful points of the fibromyalgia. Can this picture be considered as clear evidence of your experience with fibromyalgia? Because?

The picture  The broken column  – in which nails stuck by the body of the artist – depicts Frida’s relationship with the sequelae – multiple fractures in the spine – of the accident suffered in her youth, as well as her relationship with pain. Regarding the painful points of fibromyalgia, it seems to be a plausible hypothesis, but it certainly does not constitute a “clear evidence”, especially when considering a painter of the category and intensity of Frida Kahlo.

What is the “importance” of pain to the work of the Latin artist?

Frida Kahlo painted many self-portraits, considering herself quite self-aware. It is presumed that the artist portrayed on her canvas many moments of pain – both of physical as well as emotional origin – which were part of her existence. In this way, it is possible to conjecture that Frida somehow finds in art the sense of pain itself.

* The article by Rodrigo Siqueira-Batista, Plínio Duarte Mendes, Julia de Oliveira Fonseca and Marina de Souza Maciel was published in 2014, in the magazine Dor.

 

WITHOUT ESTIGMAS


To live with the syndrome and maintain the quality of life, it is essential that the person affected by fibromyalgia treats it seriously and deals with professionals who are knowledgeable about the subject

Euler Junior/EM/D.A Press %u2013 7/2/14
Jorge Luiz Dutra, 59, was repeatedly questioned because he felt pain (photo: Euler Junior / EM / DA Press% u2013 7/2/14)

On the 12th, World Fibromyalgia Day is celebrated. The date strengthens the fight of patients for more access to treatments and, especially, for more visibility for the syndrome. Only the public’s awareness can change the panorama of disbelief around the chronic pain that marks the problem. The retired bricklayer Jorge Luiz Dutra, aged 59, has been diagnosed since 2004 and still lives today with distrust. A resident of the countryside, he is already tired of hearing that fibromyalgia is just an excuse. “A lot of people say that I have nothing, that I do not want to work. They look at me and say that if I’m fat, I’m in good health, “he says. But it is Jorge who knows the suffering of living imminent pain, a symptom influenced by social, cultural, emotional and religious issues.

According to Roberto Heymann, a rheumatologist at the Albert Einstein Hospital and a professor at the Federal University of São Paulo (Unifesp), pain assessment is complex because there are no precise measurement measures, such as in hypertension and diabetes. patient, professional or family information. “If they lack adequate information, there will certainly be a misjudgment. And that’s why we often see family members, co-workers, or even health professionals disbelieving in their suffering. This increases the degree of fibromyalgic ailment, even influencing the evolution of its clinical condition. “Lack of adequate knowledge about this syndrome in society often creates absurd preconceptions. Family and social support is essential, “he says.

The pain of fibromyalgia can generate a lot of suffering, enough to disrupt your daily and usual activities. But even though patients and entities struggle for the possibility of leave or even retirement, leaving work is a complex issue, Heymann said. “There is no data to prove that it generates any benefit, and the removal of work is usually followed by worsening of the picture,” he explains. For the specialist, in most cases, it is perfectly possible to live with the syndrome and maintain quality of life. For this, it is essential that the person affected by fibromyalgia takes it seriously and deals with professionals who are well-prepared and knowledgeable about the subject. “The patient should face the treatment as any other disease, without stigma,” he says.

REACTION  Personal trainer Michele Barreto, 42, had the diagnosis 14 years ago. Medications, therapy, changes in eating habits and regular physical activity allow her to coexist with fibromyalgia without major problems. “Today, I’m fine, but at the time of the diagnosis, I had to sit on the floor and cry. But I had two options: either that would break me or I would react. The patient needs to understand that the condition improves when adhering to treatment, “he says. Former volleyball athlete, Michele was surprised people were able to tell the benefits of relaxing a massage. “Because I screamed in pain instead of relaxing. I had also stopped sleeping and I was already getting tired, “he recalls. It was this experience that led her to a rheumatologist who diagnosed fibromyalgia.

Edésio Ferreira / EM / DA Press
Personal trainer Michele Barreto, 42, faced fibromyalgia and insisted on physical activity even in the days of much pain (photo: Edésio Ferreira / EM / DA Press)

In volleyball times, Michele had injuries that were slower to improve. At the time, this became a reason for mistrust, because some people imagined that she was doing “soft body” to play. But it is common for fibromyalgics to be patients with a history of pain that precedes the diagnosis. According to Eduardo Paiva, head of the Pain and Fibromyalgia Commission of the Brazilian Society of Rheumatology, there are several ways to reach fibromyalgia. “It could be, for example, the result of an untreated localized pain. It may also begin after a physical or psychic trauma. But the most common is that it is the result of localized pain, which is chronifying and taking the whole body, “explains the specialist,

And it was exactly a trauma that worked as a trigger for Michele’s fibromyalgia. She drove, when she suffered a serious car accident, in which two friends were very hurt. “I was guilty. At first, I thought the back pain was a consequence of the accident. I got to wear a cervical collar for a while, but the pain continued, “he says. The first reaction after the finding of fibromyalgia was to seek all kinds of resources to deal with the disease: massage, acupuncture, homeopathy, therapy. The latter was essential for her to change her way of facing the disease. “I learned that if it somatizasse, it would make things worse.” Physical activity was also essential. “I have heard a lot of doctors say that it is more than 50% of the treatment. Sometimes it’s so much pain that we do not want to do anything. But it takes persistence. ”

Personal experience with fibromyalgia makes the professional be much sought after by people who want to take advantage of the benefits of physical activity to control their symptoms. “I think they have confidence to train with me because I know what they feel on the skin. In addition, physical activity for fibromyalgia has to be specific and very well targeted, “he warned. For Paulo Paiva, physical activity may be more efficient than the drug in some cases. If left untreated, fibromyalgia can lead to a considerable loss of quality of life. In addition to medications (neuromodulators and dual antidepressants are the most indicated) and physical activity, treatment involves patient and family education. Cognitive behavioral therapy (CBT) has also shown benefits.

 

ALTERNATIVE AND COMPLEMENTARY THERAPIES

A review of controlled studies evaluating the effectiveness of massages in the approach to fibromyalgia showed that five weeks of the resource were able to promote immediate benefits such as improved pain, anxiety and depression. Physiotherapist Susan Lee King Yuan, a master of science from the University of São Paulo School of Medicine and a researcher in the area, therapeutic massage may be one of the possible alternative and complementary therapies (CT) used in the treatment of fibromyalgia.

 

Myofascial release massage can improve pain, fatigue, stiffness, anxiety, depression and quality of life. There is some evidence that manual lymphatic drainage is superior to connective tissue massage in relation to stiffness and depression. There is evidence that connective tissue massage improves depression and quality of life and Shiatsu improves the threshold of pain, fatigue, sleep and quality of life. “Studies suggest that most massage therapy styles improve the quality of life of fibromyalgia patients, but more research is needed to confirm its benefits,” he says.

 

Internet Playback
Functional magnetic resonance imaging allows to compare the brain activity of a normal person with a patient with fibromyalgia. Both were submitted to a stimulus of 4 kg of weight capable of causing pain (photo: Reproduction of the Internet)

In theory, speaking of massage in general, pain relief may be due to increased blood circulation, which promotes oxygenation and removal of toxins from the muscles, relaxation and release of endorphins. “Hardly, the pain will disappear completely only with the use of massage therapy. The most appropriate is to use massage as a complement to other therapeutic resources in a multidisciplinary treatment to control the symptoms of the syndrome, “he explains.

 

There is no study that conclusively determines an ideal frequency of massage application in fibromyalgia. Some researchers suggest a treatment time longer than five weeks. For Susan, CTs advocate the patient’s holistic view and value the therapist-patient bond. The important thing is that this massage respects the threshold of the patient’s painful sensitivity to palpation. “The use of CATs as a complement in a multidisciplinary treatment is ideal: it is especially important that such treatment should include patient education, some psychotherapeutic technique and therapeutic exercise, which has the strongest evidence of efficacy in the treatment of fibromyalgia.”

NUMBERS

Epidemiology

 

  • The prevalence of fibromyalgia in the world varies from 0.7% to 5% considering the general population.
  • In Brazil, it is probably the second most frequent rheumatic disease, with prevalence around 2.5%
  • It can range from children to the elderly, but usually their symptoms begin between the ages of 25 and 65, with a mean age of 49 years.
  • It affects more women than men, in a ratio of 8: 1, when used the criteria of the American College of Rheumatology of 1990

 

INTERVIEW 
A new look

 

Personal archive
Manuel Martinez-Lavín, rheumatologist and master of the American College of Rheumatology (photo: personal archive)

Recognized as an authority in the area of ​​fibromyalgia, Manuel Mantinez-Lavín explains the mechanisms of the disease with original hypotheses, scientifically confirmed and widely cited by other authors around the world. In the book Fibromyalgia without mystery – A guide for patients, family and doctors (MG Editores), he proposes a holistic treatment to relieve the symptoms of fibromyalgia, indicating, in addition to medication, a variety of effective measures, such as positive attitude towards the disease, group therapy, yoga, meditation, physical and respiratory exercises, cognitive-behavioral therapy, differentiated diet and adoption of techniques to improve sleep. In an interview with the State of Minas Gerais, he comments on this new approach and talks about the main advances in understanding and managing the disease. Lavín studied medicine at the Universidad Nacional Autónoma de México, is a postdoctoral fellow in internal medicine at St. Louis University (Missouri) and in rheumatology at Scripps Clinic (California). Since 1983, he has been director of the Rheumatology Department of the National Institute of Cardiology Ignacio Chávez in Mexico, as well as professor of rheumatology at the Universidad Nacional Autónoma de México and member of the National Academy of Medicine. In 2013, he received a master’s degree from the American College of Rheumatology.

What advances has the method of heart rate variability analysis brought to the fibromyalgia approach?
The analysis of the rhythms of the heart by means of computers allows to study in an effective way the functioning of our main system of internal regulation and adaptation to the environment, the so-called autonomic nervous system. This system is responsible for responding to stress and our investigations have shown that, in patients with fibromyalgia, the functioning of the autonomic nervous system is compromised. There is increased production of adrenaline day and night, for example. Our studies have been confirmed by researchers from other parts of the world. With this knowledge radically changes the concept of fibromyalgia. Treatment should be directed at harmonizing the functioning of the autonomic nervous system, which usually demands significant change in the patients’ lifestyle.

If fibromyalgia pain radiates through the body would it be explained by this functioning of the autonomic nervous system? 

Precisely. Our theory explains the reason for widespread pain, since small nerve fibers are all over the body. We have confirmed that patients with fibromyalgia have impaired nerve fibers in the skin and eyes, which in medicine we call neuropathy of small fibers. It must be understood that fibromyalgia is a true neuropathy and produces as much pain as the neuropathy of diabetics and patients with herpes zoster.

And what are the advances in understanding the causes of fibromyalgia?

The main advance is the explanation of how different types of stress (physical, infectious and emotional) can become a true neuropathic pain. We have obtained evidence that suggests that constant stress can damage the so-called dorsal root ganglia, nerve centers that are located along the spine. After a physical or infectious trauma, short circuits are established between the autonomic nervous system and the fibers that transmit pain. Changes in the autonomic nervous system explain the multiple ailments suffered by people who have fibromyalgia, such as fatigue, insomnia, and bowel problems.

What is the holistic treatment you advocate? Why is it more efficient?

First, I want to explain that it is a holistic treatment, however, based on the complexity sciences. There is a new scientific paradigm called “complexity”, far removed from the linear and reductionist model that is currently dominating medicine. Complexity forces us to study, in an integral way, the systems of adaptation of the human body to the environment. In the case of fibromyalgia, holistic treatment based on science first demands that patients and their families know the rations of the multiple diseases of the syndrome. By means of feedback techniques, it is possible to harmonize the functioning of the autonomic nervous system. Food is also important: one should investigate whether there is intolerance to a particular substance and follow a predominantly vegetarian diet. Oriental exercise techniques like yoga and tai chi can also help. Finally, treatment involves careful use of medications.

Are medicines such as pregabalin a considerable advance? Are there prospects of a new class of medicine? 

Pregabalin is a breakthrough. It is an antineuropathic medicine, which works in certain cases, but we have to recognize that it is a primitive medicine. We have shown that certain sodium channels that attach to the dorsal root ganglia may play a major role in the pain of fibromyalgia. Very specific drugs are being developed to block these sodium channels. Soon we will also have more effective analgesics for fibromyalgia, but a full treatment will always be necessary.

In Brazil, there is the offer of body massages developed exclusively for fibromyalgia, which promise to end the symptoms. Would massages be able to change the course of the syndrome? 
I am not familiar with this type of therapy, but before recommending any treatment it should have demonstrated effectiveness through controlled scientific studies. In my book I speak of alternative medicine, placebo effect and quackery. A gentle massage can help. However, some people with fibromyalgia feel pain even with gentle pressure on the skin.

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