Fibromyalgia in first person: “The wind makes your skin ache as if they hit you”

The symptoms are so many and so different, that the definition that best suits him is that he specifies that it is “a disorder of functions”. The WHO classified it as “disease”, but still many doctors do not accept it, which delays its diagnosis and treatment. 40% of those who suffer from it lose their jobs. In Argentina, a bill seeks to be recognized as a “disabling disease” 

Patients with fibromyalgia can have 30% of the energy of a "normal" person (Getty)

Patients with fibromyalgia can have 30% of the energy of a “normal” person (Getty)

“I remember having such intense pains that did not allow me to sleep, I could not walk more than a block, the ‘crisis’ attacked me in the middle of a morning of paperwork and having to sit on a bench in a square because I could not stand up . ” The story belongs to Blanca Mesistrano. The woman, who is 68 years old and was diagnosed with fibromyalgia at age 55, well fits that “lived to tell”.

“I am one of the very few who remitted the symptoms. Did you see that saying that speaks of one in a million? God allowed me to be that one, “she said, between excited and grateful to  Infobae .

Blanca remembered that the diagnosis came to her after a road accident.  After a crash in a micro on a work trip, literally changed his life overnight.  Fibromyalgia mostly affects women, in 80-90% of cases

“First I thought it was just the whiplash, but  that night I was not myself anymore. I could not go back to work . It was distressing to lose employment, co-workers and face economic uncertainty, “he said. The disease radically changed my life, it took me out of safety, it was very painful and difficult but it made me grow a lot as a person “.

Since 2007, the woman has presided over Fibroamérica, a non-profit organization that carries out programs aimed at improving the quality of life of people with Fibromyalgia, Chronic Fatigue Syndrome and Multiple Chemical Sensitivity. “I’m blessed, but I’m still with my heart in my sick friends (Blanca speaks in feminine because the disease affects the vast majority of women, in 80-90% of cases). Hopefully we can solve the problems they have and alleviate their suffering, “he said.

Patients report pain that prevents them from walking more than three blocks (Getty)

Patients report pain that prevents them from walking more than three blocks (Getty)

Both the World Health Organization (WHO) and the UN Convention on the Rights of Persons with Disabilities define  disability as the “lack of a function that prevents inclusion in daily life” .

In Argentina, Law 22,431 on the comprehensive protection of the disabled considers disabled persons who suffer permanent or prolonged functional impairment, physical or mental, which in relation to their age and social environment imply  considerable disadvantages for their family, social integration, education or employment .  In times of crisis or relapse, patients suffer from body pains that are so strong that they do not allow them to sleep

Fibromyalgia alternates periods of well-being with others of crisis or relapse. In those moments, the president of Fibroamérica described that patients can have 30% of the energy of a “normal” person, can not stand, can not walk more than three blocks, the body aches are so strong that does not allow them to sleep, they experience  hypersensitivity in all senses  and even memory loss and difficulties to orient themselves in the street.

“The wind makes your skin ache as if they hit you. The sensation is burning, punctures in the skin and the worst thing is that there is no way to anticipate the symptom. In the morning you wake up as if you had been beaten , is what doctors call  morning stiffness  and happens most days, “Blanca tried to delineate what were his toughest times with the disease.

Does this situation situation prevent inclusion in daily life? Does it imply whoever has a social, educational or work disadvantage? Well,  in Argentina, fibromyalgia is not considered a disabling disease . Or to be more precise, “the National Rehabilitation Service modified its regulations to evaluate the granting of the certificate of disability and does not include fibromyalgia in the list of disabling diseases,” explained the president of Fibroamérica.

40% of people with fibromyalgia lose their jobs because of the disease (Getty)

40% of people with fibromyalgia lose their jobs because of the disease (Getty)

“This is an omission that takes away tools for doctors to evaluate,” said Blanca, who stressed: “For patients (the certificate) is essential to sustain employment and do their treatments; it is a very strong prejudice and discrimination that this regulation sometimes has no basis “.

According to a survey carried out by Fibroamérica, only one in ten patients with fibromyalgia who request it, obtain the disability certificate. To remedy this difficulty, the deputy Roy Cortina presented yesterday, in the framework of  the World Day of Fibromyalgia  that is commemorated today, a Bill that recognizes fibromyalgia and chronic fatigue syndrome as disabling diseases, so that the delivery of disability certificate in the City of Buenos Aires.  A bill seeks to recognize fibromyalgia and chronic fatigue syndrome as disabling diseases

Also, from Fibroamérica they highlighted the need to include those suffering from this condition, chronic fatigue syndrome and multiple chemical sensitivity, in addition to the regulations that express which diseases merit the delivery of a single disability certificate (CDU), inclusion in the Scale of Retirements and pensions, and their inclusion in the Compulsory Medical Program (PMO).

Beyond this specific project, Blanca insisted that “patients with fibromyalgia, chronic fatigue syndrome and multiple chemical sensitivity, are still waiting for the enactment of the national law that recognizes their rights, whose project was presented already four years. “

According to the survey of patients carried out by Fibroamérica,  only 10.3% of the people with fibromyalgia surveyed, mostly women, accessed the disability certificate , of which one in three (33.3%) received it by other Rheumatic pathologies, not fibromyalgia. When asked about the reasons for the denial, 27% explained that they were told that fibromyalgia is not a disabling disease, 12% said that they were not even given a shift and 5% said that doctors on the board They did not recognize symptoms of obvious disability.

The emotional aspect of the disease needs a psychological approach (Getty)

The emotional aspect of the disease needs a psychological approach (Getty)

Blanca explained that ” the severity of the symptoms means that they can not fulfill their daily tasks  and since they are not visible and can not be revealed in studies or in their physical appearance, everything contributes to our not being taken into account”. In this way, patients can not justify their sick leave. Up to 40% of them lose their jobs and social work, leaving without the necessary licenses that every sick person deserves. “Thus, impoverished and ill, without medication or treatment, they are forced to ask for the disability certificate that would allow them to keep or get a job and alleviate their situation. It is essential to take pressure off the patient for recovery and give support to face their therapies, “he said.

On incomplete definitions and invisible symptoms
The wide range of aspects that the disease involves is the main reason why its definition is difficult.

” Fibromyalgia is a generalized chronic pain disorder , in which the nervous system interprets as painful signals situations that are not, and in extreme cases, patients suffer pain with the simple touch of their skin against an object.” This was summed up by  Infobae,  the rheumatologist Darío Scublinsky (MN 89.454), coordinator of the Arthritis Program of the Swiss Medical Group.  Nearly two million Argentines suffer from fibromyalgia, this is almost one in 20 people

As he explained, the complexity of the picture means that his diagnosis is neither by images nor by laboratory. “The diagnosis is clinical and is based on the interrogation and physical examination of the patient,” he said. It is known as the invisible disease because the patient usually visits several professionals until they come up with the correct diagnosis.  This is because the studies give normal values. The early approach benefits the patient to be able to initiate the treatment that alleviates the pains “.

After highlighting that the treatment should be interdisciplinary, the expert said: “The fundamental triad to understand the patient and adjust the follow-up as required by the course of the disease is composed of  rheumatologist, psychologist and physiotherapist , the latter specialized in fibromyalgia.”

The diagnosis is clinical and is based on the interrogation and physical examination of the patient (Getty)

The diagnosis is clinical and is based on the interrogation and physical examination of the patient (Getty)

“If the psychologist is not experienced in the pathology, it tends to minimize the disease and is included within the psychiatric disorders, or is framed within the depression,” stressed the professor of Pharmacology at the UBA. In Argentina there are almost no interdisciplinary teams that address all these aspects of the disease. “

“The specialist in rheumatology is the one who is most familiar with the disease and can coordinate the actions of the team. The emotional aspect, although it can be managed with different drugs, requires a psychotherapy support that collaborates in the aspects of anxiety and / or depression. Cognitive behavioral therapy is one of the most assertive for this approach “, contributed the clinical and neurologist Gabriela Ferretti (MN 81108).

According to WHO data, it  is estimated that between 1% and 4% of the world population suffers from fibromyalgia , and this affects 10 times more women than men. Nearly two million Argentines suffer from it, this is almost one in 20 people, although most do not know it.  In 1990 criteria were established based on certain painful points that, if suffered, fibromyalgia was diagnosed

Currently, it is taken into account that  patients with fibromyalgia usually have a commitment also in the psychological sphere  since the disease can be triggered after a stressful situation. In a high percentage of patients, the disorder is usually associated with depressive and anxiety symptoms.

From his role as patient, for Blanca Mesistrano the definition that best fits the reality is that of the Argentine immunologist doctor, based in Spain, Pablo Arnold, who refers to fibromyalgia as  “a disorder of functions” .

So far, the origin of fibromyalgia (Getty) is not known.

So far, the origin of fibromyalgia (Getty) is not known.

“Although they are attributed to infectious causes, genetic predisposition or psychological trauma as trigger, until now its origin is not known with exactitude, although it is mainly approached as a rheumatological disease”, said Ferretti, who stressed that “the most recent diagnostic criteria, of the American College of Rheumatology, date from 2010 “.

The  heterogeneity of the symptoms  and the lack of specific findings in the complementary studies generate confusion in patients and professionals not familiar with this topic. And if that is added, as in the case of Argentina, a legal vacuum, which leaves patients in a position of total vulnerability, must deal with a system that does not seem to understand the pains of the body and soul. And trust, hopeful, that one day they will rise with rigidity, yes, but in a country a little more friendly.

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