Get up, eat breakfast, train, work, study, go out, have fun, sleep, and start the day over and over again. We’re in constant motion. The routine becomes almost an attitude of survival and endurance, which requires us to be awake, active. In this everyday life, in the fullness of daily tasks, Fibromyalgia appears, an almost imperceptible syndrome characterized by generalized pain in various parts of the body.
According to the specialists, it is a multiskeletal pain that presses especially in certain points or areas of the body in which the pain is felt, the so-called «tender Points». To obtain an accurate diagnosis, the person must register eleven or more tender points. » The pain is an alarm to conserve life, warns us that something is going to spoil, break in the organism, «explains Dr. Maria Cristina Lunic at Filo. News.
Dr. María Cristina Lunic | Photo: Facebook
Lunic serves as a Reumonóloga doctor 21 years ago. His specialty is to accompany the medical treatment of patients with chronic illnesses, especially fibromyalgia and arthrosis. He works at the Hospital de Clínicas as coordinator of the area of psychoeducation of patients and is also a university teacher. According to the specialist, usually the causes that trigger Fibromyalgia are due to important situations of chronic or permanent stress (which could be the loss of a loved one, an accident, situation limit, abuse, among others not certain) that They alter the regular mechanism of pain processing. The brain feels threatened by a situation and reacts. «To defend life, the brain learns pain and is mistaken: since it is so sensitized that it perceives as pain, stimuli that another person does not usually hurt,» explains Lunic. Aloritmia and Hyperalgesia. It is called aloritmia when the brain is so sensitized that the patient often feels pain when there are no stimuli, and hyperalgesia, when the person feels pain where another does not.
Camila Camejo and her fight for fibromyalgia
Fibromyalgia constitutes one of the disorders (such as chronic fatigue syndrome, multiple chemical syndrome or electromagnetic hypersensitivity, among others) that includes the Central sensory syndrome, which commemorates this 12th of May its International day, with the objective To raise awareness and spread the symptoms and treatment to fight disease. As in other struggles there is a color to visualize the syndrome: The Violet, who wore the Argentine obelisk in pursuit of the fight. » It is estimated that between 4% and 7% of people suffer from fibromyalgia in countries like the United States, Germany, England and Spain, «explains Lunic, who adds that in Argentina» there are no reliable statistics «.
The obelisk awaits Violet on the day of Fibromyalgia | Photo: gentility Blanca Mesistrano
For its part, Blanca Mesistrano, founder of Asociación Fibroamérica, mentions that although there is no survey, «it is believed that it is about 6%». Although what is known is that a «99% of those affected are women.» Living with Fibromyalgia: The struggle for a diagnosis before an invisible disorder
«I was diagnosed with fibromyalgia two years ago but it all started much earlier,» says Camila Camejo (22) A student of surgical instrumentation. I was 17 years old, I was federated in handball at the All Boy Athletic Club when she began to feel her first symptoms, which They took her to a journey between doctors, studies and the lack of a precise diagnosis. » I began to notice that I was injured several times, began to lose strength and had respiratory infections such as pharyngitis, «he recalls. One of his infections was because of a Streptococcus pyogenes that was concentrated in the tonsils, so they had to operate.
«They told Me that when they eradicated the infection, it was no longer going to have more pain, and it was at that moment when it really started,» he says.
After hospitalization and visiting several specialists, he went through nephrology, Infectology, Otorrinonaringología, surgery, medical clinic, neurology and cardiology. More than 15 blood tests, X-rays, because they did not determine the cause of their pains. Studies were negative, there was no apparent cause for his pain. «That had to be a joy but when you are so desperate for a diagnosis, for an answer, deseás that something goes out and thought: My body is not well, I need someone to help me,» says Camejo.
Fibromyalgia | Source: Tedx Talk «adapt to live with ourselves»
«I began to say, ‘ This girl has nothing. He must be having some problems in his head because the infection is already fought and we don’t detect anything. It’s bastanste Maricoa, «he remembers and adds that his mother urged her to move on. Finally two years later (on February 22, 2016) having felt his first pains and injuries, he obtained a consultation in the rheumatology area of the Hospital de Clínicas. She was spotted by a resident, interviewed and performed the traditional grocery check.
«To receive the diagnosis you have to have pain in 11 points and I hurt all, the 18, and some that another also,» says the young woman.
«I said I had no cure but I could improve my quality of life, which at that time was very deteriorated: I dragged my feet to walk, I could hardly bend my knees, or talk about being able to crouch or walk fast. I went from my house to the hospital and the hospital to my house, and sometimes to school to finish high school, he says. Valeria Luque-Undergraduate student in tourism (UNSAM) and speaker of the Tedx talk «adapt to live with ourselves»-he also struggled to get his diagnosis. «When the doctor gave me the diagnosis it was a shock. I was happy because I finally had a name for what was happening to me but I said I was going to have it all my life and I was going to have to learn to live with it. Was to begin to decide what I do, «he says.
His pains began mainly in the lumbar area, extending through the cervical, arms and other parts of the body. He started a different stage of his life. » I had to change a lot of things. Some I had to stop doing: I really liked volleyball and I had to stop, try to avoid the stairs, not lifting weight, avoid the train in rush hour. I was thinking of ideas to not affect me in the day to day. The disease will always be there and you have to keep going, «he says. It is not easy to access an early diagnosis because the painting is hardly present in a complete way. This is explained by Dr. Lunic: «The patient begins with pain in some parts of the body, then feels places in more areas, the person begins to feel decay. It has alterations in attention, sleep, memory. Everything is adding up, so the last doctor finds it easier to make a diagnosis when the patient has already been reviewed by several specialists previously. The first is not easy but not necessarily because it does not know but because the picture is not presented complete in the first instance. Treatment
The treatment is to improve the quality of life of the patients so that they can continue with their routines and activities since the Fibromyalgia is irreversible. «It is important to reduce pain with numerous medications-analgesics, anti-inflammatory, antidepressants, anticonvulsants, etc-. Patients have to learn to recover as much as possible their physical condition and their stress tolerance to not arouse the alarm of the organism that puts the movement the mechanism that the brain has already learned. As it is in defense of life, the brain does not forget it. Then we have to build new pathways of stimuli that relativicen the way of pain, «the Doctor explains.
Valeria Luque in «Adapting to live with ourselves»
It wasn’t easy for Camila. At first, she started treatment with a drug called pregabalin but it gave her adverse effects. «I began to have a lack of memory, I had trouble talking and no one understood what was happening to me,» he recalls. Worsened. I didn’t know who I was, couldn’t speak well and nobody realized that the pregabalin was making me worse. I spent almost a year (nine months) taking the drug, «he says. At the time they noticed that it was the drug and they changed the drug. Argentina: By a law of central sensory syndromes
«There is not much understanding, neither of the doctors, the society, nor the state. There is no law in Argentina that protects us. The bill that was presented last year received a half penalty but as it was not treated lost parliamentary status and was chested, «says Camila.La Foundation Argentina of fibromyalgia Dante Mainieri fight for it. «Since 2015 we have presented an ante bill to the former deputy Rivas (of which both Dr Arroñada and I are co-authors) and subsequently obtained (in June 2016) positive opinion of the Commission of Social Action and public health of the HCDN. It had to go to work and budget (which were the 3 commissions that revolved the project), they did not want to treat it and expired at the end of that parliamentary period, «reports Miriam Mainieri, President of the Foundation.
In 2016, the foundation worked together with Senator Liliana Fellner (author of the Project S176 2016), which called for the incorporation of Fibromyalgia to PMO (compulsory medical program). For the first time a bill on Fibromialfia was presented at the Congres, with 68 positive votes and 0 abstentions. He went to the House of Deputies, met a total of 30,000 signatures submitted but the project expired. In February 2019, Senator Maria Magdalena Odarda represents the project as the author who again requests the incorporation of Fibromyalgia to PMO under the number S 4811.
«This year and the next (since the Bills are 2 years in force) I will accompany personally and as President of This foundation in the hard work of insisting both in the Senate and in deputies that the projects are treated in their corresponding commissions to see if we achieve the complete sanction of the incorporation of the fibromyalgia in the PMO, «says Mainieri.
The project also fights for an integral coverage of the treatment, to determine (in the cases that corresponds) the work incapacity of the patients, as well as to have a statistical register both in the public and private field and to elaborate a map Nationwide epidemiological. » Lack of understanding but fundamentally training in fibromyalgia. The WHO (World Health Organization) declared it in 1992. To this day it is not recognized as a disease. I happened to go to the hospital for an emergency and I haven’t even been checked, even though I told them what I had. They asked me to relax and go home. It is necessary to see with the patient what is happening, «thinks Valeria.
Fibromyalgia treatments are very expensive, and the situation is more complex when the patient is dismissed (or unable to exercise) his work by not presenting any apparent signs of his pain and fatigue. » What are we asking for? That include fibromyalgia and all diseases that includes Central sensory syndrome within the compulsory medical program, which is a disease in Argentina. For the state we are not sick, we invent things, «Camila adds. Improving the quality of life is possible
Dr. Lunic says that «50% of patients manage to live without medication.» «My advice is to pay close attention to the body itself, to identify what it needs. To get to know oneself. Listen to what the body and the person ask for, «says Valeria. Camila closes with a hopeful message:» You are not alone, there are different groups in social networks so that they can share their stories and situations. Support a lot in your family and loved ones, that they understand that you are having a bad time. The acceptance process helped me a lot. Ok ‘ I’m sick and I’m going to get ahead ‘. Even if you think ‘ how I’m going to get out of bed and follow my life ‘ Yes, you can and must follow. ‘ In this note: