Vincenzo Montella, Asia Argento, Lady Gaga . A sportsman, an actress, a singer.
What do they have in common?
Not the skill, certainly undisputed, and not even the celebrity, equally undisputed, but one of the most widespread diseases in the world yet unknown; one of the pathologies that, although not reducing life expectancy in any way, intoxicates every moment of everyday life.
They are sick with Fibromyalgia .
It is a syndrome that causes chronic and widespread pain , especially in the area of the musculoskeletal system , which is joined by a procession of physical and psychic symptoms ranging from irritable to sleep disorders.
Some researchers define it as a central sensitization problem : the disorder, in fact, derives from a hypersensitivity of the somatosensory system that is to say that Fibromyalgia would alter the way in which the brain records the pain signals causing a misinterpretation of these stimuli and therefore a lower tolerance threshold.
Not by chance for many years – and by some even today – it has been considered a psychological illness; although it was known from the 1800s, it was only in the 1970s that its official name was coined and, in 1992, the international diagnosis was accepted, allowing its current classification among the ” diseases of the musculoskeletal system and connective tissue ” ( ICD- 10 ).
So much so that, unlike his most famous relatives, to date can not be diagnosed either through the most common blood tests or by X-ray, ultrasound or CT scan.
The doctor can only perform a clinical diagnosis based on the patient’s symptoms, the history, without using any laboratory or instrumental tests.
This is why, in the absence of tangible results, fibromyalgia patients are most often considered ” imaginary patients “. Even by health workers themselves.
So the cause is not known, the cure is not known, the instrumentation is not known to diagnose it, sometimes it does not even know its existence.
In fact, the level of misinformation around a condition that affects – mind you well – about 3-4 million people only in Italy, especially women with an estimate of 9 out of 10, is still very high in our country .
But there is much more.
Although recognized as a disease by the World Health Organization , in Italy Fibromyalgia is not yet included in the LEA, the essential levels of assistance, and the necessary services are not covered by the National Health Service , except for some rare exceptions.
Translated: Fibromyalgia sufferers have no state aid and are often forced to give up those treatments that could, at the very least, alleviate their suffering.
Only recently has the Social Affairs Committee of the Chamber , following the recognition process already initiated by some Italian regions, approved a text to include Fibromyalgia in the list of chronic diseases, to be included in the Lea, committing the Government to evaluate the social impact of this syndrome and, consequently, to promote every research initiative to define objective criteria and indicators.
So we decided to give voice to those who live in first person the difficulties of this condition by interviewing Elena Faccio : woman, mother, singer and fibromyalgic who dedicated his new piece of music to the subject.
- Last December you presented a preview at the Chamber of Deputies, during the conference of the ONPS ” Nutrition, lifestyles, prevention to protect and guarantee health “, the videoclip of your song ” Corpi fragili ” written in collaboration with the musician Nico Pistolesi. What experience was it?
Surely an interesting and formative experience because I have had the opportunity to relate to my own illness. I was able to deal with more scientific discourses that I have always experienced as a patient and therefore with a completely different vision. For the first time I felt part of a project rather than an outcast. Finally the problem was faced! Knowing to be heard, after years of difficulty, of problems and pains, both mental and physical, has brought me a strong personal security, both as a fibromyalgic and as an artist. It was an important milestone for me.
- When did you discover that you have Fibromyalgia?
I was 9 years old. In reality, the first problems had already occurred at the age of 7 but doctors had not been able to find an immediate explanation for my pains. There was nothing from the clinical tests and I did not even have visual signs, for example swelling. It was a very hard time. I went in and out of the hospitals continuously, with the consequence that I often went to school so much so that my situation was supervised by the Carabinieri. The worst aspect was that I suffered without knowing the cause. After these first difficult years, a doctor told me that it was Fibromyalgia.
- In your song you say “I work in a fixed image, certainly I will not have any signs on my body “. What are the most common symptoms?
The symptoms are different to say the truth, certainly among the worst there are those that I call ” cramps “. The pain is so strong that the muscle hangs because of the suffering you experience. Often I can not even raise an arm. The evil, when it is acute, also touches the perceptive level: I can not touch my skin because even the touch causes me to be thick. Of course, this also adds to mood problems. Painkillers are not enough; you must have patience and rest. Also I feel constantly tired, sometimes I have a headache. In short, Fibromyalgia makes you unable to feel support, I feel as if my members lose control.
- Many fibromyalgics tell the fear of not being taken seriously by family members, friends and even doctors. Have you ever considered yourself an imaginary sick?
It happened to me, absolutely. The fact of not physically seeing the problem makes people blind. Thanks to God, my parents have always understood me. Instead, it was different with the doctors because they were convinced that I created these pains in my mind to stay voluntarilybad. The result was a full seven years of useless sessions by the psychologist who never found me any psychic discomfort. With the passage of time I began to feel depressed. With adolescence and the escalation of the disease, I began to have difficulty in relating with the boys of my age: they told me that I was a fake, a liar. Even the teachers insinuated that I pretended to be sick when, during the lesson, I asked to leave the classroom or lie down for a moment. So yes, certainly I clashed with people who considered me an imaginary sick but I also met many other people who knew me and go further.
- Fibromyalgia has been recognized as a disease by the WHO and yet the Ministry of Health has not yet included it in the LEA. How much does this circumstance affect the life and portfolios of a fibromyalgic?
It really affects. I need therapies and drugs but without money I have to give up. Unfortunately we do not have any help. I do not hide that many times I have been crying, asking myself ” how will I do? “. To date, I’m trying to support the costs of the osteopath and this has led me to abandon all those therapies, not guaranteed by the Health Service, which I would need but that alone, without help, I can not afford. If there was not the economic, as well as moral, support of my family I could not even make sure of one of the necessary treatments because I could not do it alone.
- The specialists of the European League Against Rheumatism (Eular) have updated the guidelines for the treatment of Fibromyalgia emphasizing the importance of a multidisciplinary therapy. Which treatments did you rely on? Did you benefit?
There are many treatments. Personally I tried Scrambler Therapy ( non-invasive therapy developed by bioengineer Giuseppe Marineo to combat chronic pain using electrodes, ed), acupuncture, osteopathy. Here, the latter is unfortunately not supported by the Health Service but I must say that, at the moment, it is the only treatment that allows me to stretch the muscle. In addition, the osteopath helps me with the postural. Consider that the hump position that the body takes in the moments of pain in the long run becomes unconscious and, with the growth, goes to jeopardize the correct posture. Physiotherapy, which in reality I have never been able to afford, and some workouts in the gym, provided under the guidance of an instructor specialized in managing these problems, may also be useful. Some try then with pilates and yoga. As you can see, there are no therapies but activities to be combined with real therapies. The rule must always be constancy.
- Does nutrition also play an important role in the healing aspect?
At the moment I’m doing a diet in this sense. I do not speak directly because it is a subjective speech; I can tell you that, in general, we recommend the intake of a lot of Omega 3, therefore the fish, while the meat must have a more moderate consumption. On an energetic level, nutrition certainly has an important task. I can not tell you that food is a cure but I can confirm that the pain in the stomach leads to a reflex on the back and feeling heavy leads to mental fatigue. Everything is connected, so a controlled use of food is welcome.
- On a personal level, how is this syndrome addressed by patients?
It is a very important question. I met different types of people with different attitudes. Some consider Fibromyalgia as the end of the world, others have a more optimistic thought. It is certainly a disease but you can fight! It takes so much strength and desire to change because stuffing with drugs is not enough, it does not make you feel good and does not improve the situation. Fibromyalgia is also a way of putting yourself in life. Do you want to be sick? Well, you found bread for your teeth. Do you want to fight it? You can do it but you have to make your voice heard where you need it rather than stay passive in front of the problem.
- How important is the psychological support of those around you?
Very important. It is a pathology that consumes you and, in the darkest periods, becomes grumpy and impatient. Certainly it is essential to have someone close who knows when to be quiet or when there is a need for a hug. It does not give you relief who only pities you. The psychological aspect is not to be underestimated because if you stay alone you are not helping yourself. You must try to meet the people in front of you as they might come to meet you. Nothing is due. Psychology is two-sided, it does not turn in one direction.
- It often affects people in the occupational age causing less work performance, frequent absences, disturbances in concentration and memory. These are factors that in the long run can cause serious problems in maintaining a job. For those looking for a job there is a double obstacle: the economic crisis and Fibromyalgia.
The work aspect is a problem for me as much as I am looking for, as for the forty year old who has to keep the place. We have no help. There are associations to which you can explain your condition and give the curriculum but in the end it is the company that decides. You can even get to a workstation but if the pain is so bad that you can not lift the newspaper or move a chair, you can not smile at the customer or stand up, who you tell lies? The employer notices and says ” goodbye, it was a pleasure “. It’s a difficult situation both for me and for the other fibromyalgic with whom I compare every day. Now I’m waiting, I hope one day to be able to change my mind and say that someone has finally given us a straight line.
- In the private sphere, in relationships with other people, is Fibromyalgia what limitations it causes you? What is your life different from that of your peers?
Certainly there have been limitations and there are. I had problems especially during adolescence. I did not go out often with my peers, in the evening I stayed at home because I felt destroyed. Unfortunately, when you’re 15 to 16 years old, if you can not keep up with the others, you’re out of the loop. Today it is easier for me to separate my fibromyalgic life from social relations. All in all I feel lucky because, although I have a problem, I always try not to put too much into my life.
- In the worst moments, what gave you the strength to fight?
When I was younger my strength was life itself , the dream of wanting to split the world, of wanting to be a singer, the actress, of not wanting to hinder me from such a problem. It is difficult when, during the acute phase, you are stuck in bed without being able to get up and you wonder when it will end. I felt strong when I could get out of the window. I told myself ” if I ‘m here it’s because I can do it!“. I have always believed in my abilities and I felt even stronger when my son was born, Daniel Christian, who is now a year and a half old. Despite the physical difficulties of making the mother, of raising my son, of playing with it, I can say that today Daniel is my strength. Everything I did before he arrived, now it is worth double, triple. A child really changes your life. I’m happy because I thought I would never become a mother because of Fibromyalgia.
- A last question. I ask you to greet us by choosing a phrase from your song ” Corpi fragile ” to launch a positive message of closeness to those who fight their battles every day, just like you.
It’s a beautiful question. Impulsively I feel like answering with the part of ” fragile bodies ” that makes me shiver, that is the cry . This is the most intense part of the song because it contains everything: strength and pain. The thought that I managed to put a whole life in a song is the greatest satisfaction I could have as an artist and as a woman. I thank the musician Nico Pistolesi, without him this piece would never have seen the light. I then leave the choice of a sentence to the interpretation of those who want to hear the song, see my life in those words and reflect their own. I hope that a Fibromyalgic, reading this article, can understand the need not to get knocked down by something you can fight or even something thatyou can not fight because, let’s remember it, every day is a conquest.
” Illness is an impediment to the body but not necessarily to the will “.
Thanks Elena for showing it to us.