Severe pain spread throughout the body, especially back and neck, easy fatigue even in carrying out simple actions, insomnia, difficulty concentrating and anxiety disorders. These are just some of the main symptoms that sufferers have in common fibromyalgia, a disease that affects about 2 million Italians, especially women of working age with an average age of around 40. A pathology, however, that it still remains unrecognized, so much so that only one in three Italians know what it is and only in one out of two cases the disease receives a diagnosis. These are some data from a survey by the Piepoli Institute, with the non-conditioning contribution of Alfasigma, conducted on a sample of 1000 people, to test the degree of awareness on fibromyalgia – of which World Day is celebrated on 12 May – and to better understand the needs of patients and implement adequate care pathways.
In detail, the survey shows that a third of Italians claim to know about fibromyalgia but in reality its fame is not accompanied by information: only one in 10 Italians gives an appropriate description. It is mostly known as a “severe pain” or “affecting” muscle disease. Among those who know her the most, however, there is a strong gender difference: it is in particular women aged 34 to 45 and with high educational qualifications who, with a prevalence of 37% compared to 25% of men, know the illness. Indeed, only one in 4 men know what fibromyalgia is and the level of knowledge collapses between the over 54s and the less educated.
A major information campaign and public legitimation of the disease is therefore needed – reads a note. The sources of information from which it was learned are mainly the television (42%), word of mouth (26%) newspapers and internet (16%). Yet the doctor, primary care or specialist, remains the most reliable source for gathering news on fibromyalgia (39%), followed by television with 27% and the internet with 20%.
However, fibromyalgia is not yet recognized as a chronic disease. “First of all, it is a syndrome – he explains Piercarlo Sarzi Puttini, director of the UOC of Rheumatology Asst Fatebenefratelli Sacco of Milan and president of the Italian Fibromyalgia Syndrome Association (Aisf-Odv) – as characterized by a set of symptoms. The peculiarity is the presence of a widespread musculoskeletal pain for at least three months. From 2010 onwards they detect 3 other cardinal signs: sleep disturbance, mental and physical fatigue and neurocognitive disorder. These cardinal symptoms are also associated with psycho-affective aspects such as anxiety and depression “.
“For the diagnosis – he reports – we use two criteria: on the one hand we identify the areas where the patient feels pain. There are a total of 19 areas and the patient with a cross marks whether he is present or absent. The second is a score of symptoms sensitivity. The sum of these and the previous ones goes from 0 to 31 and indicates the possible diagnosis and the severity of the disease. Diagnosis is difficult because a biochemical criterion is missing: it is necessary to listen to the patient, collect his clinical history in relation to the symptoms and evaluate clinically “. IS the diagnosis of the disease unfortunately occurs only in 1 out of 2 cases and in most cases it is performed by the rheumatologist, followed by the general practitioner and other specialists.
The survey also shows that 10% of respondents know people suffering from fibromyalgia and 2% have a sick person in their family. Among those who know the disease there is the awareness that fibromyalgia is a real problem that causes great suffering. When asked about which disorders occur most, the majority refer to pain spread throughout the body and muscle stiffness as the prevalent symptoms of the disease. The rheumatologist is recognized as the specialist of choice for the diagnosis and treatment of the disease: in almost all cases, in fact, the patient feels pain spread throughout the body. Muscle stiffness, fatigue and anxiety follow.
And again: the investigation reveals that, among those who are informed about the disease, only 6% have knowledge of the associations of fibromyalgia patients and moreover generic ones (the name of any association is not remembered). Finally, according to the interviewees, the mission of an association of fibromyalgia patients should be to offer support and support to sick people. Associations are asked to encourage research and improvement of care.
To date, no drug is able to cure fibromyalgia. In fact, we intervene with the treatment of the symptom, in relation to which each patient can have a subjective and not definitive response. “The disease has different severities – concludes Sarzi Puttini – there are some cases for which a simple analgesic may be enough. Sometimes, however, we have to use several drugs. Some molecules that modify the neurotransmitters of the pain perception system are effective, such as antidepressants and anticonvulsants, low dose opioids, cannabinoids, sedatives and acetylcarnitine, useful both for muscle energy and on depressive aspects and pain perception “.
“It is also necessary – he stresses – to follow non-pharmacological treatments: first of all fitness. Having a good physical shape and eating properly is fundamental. Finally, the psychological aspect should not be overlooked, such as problems of post traumatic stress disorders they must be analyzed and corrected with therapeutic behavioral therapies ”, concludes the specialist.