Cramps, morning stiffness, fatigue, headache, mood and cognitive disturbances, paraesthesia, insomnia, irritable bowel, and genitourinary disorders. I am alone some of the main symptoms that sufferers have in common
fibromyalgia, one of the most widespread rheumatic diseases that affects about two million Italians, especially women. Although it is a chronic disabling condition, in our country, fibromyalgia is not recognized as a chronic disease within the essential levels of assistance (Lea), the benefits and services guaranteed to all citizens by the National Health Service, free of charge or by paying the ticket, if due. For years, patients have been fighting for inclusion in the list of chronic disabling diseases, which give the right to exemption from the ticket for specialist services related to the disease.
“We are fragile and vulnerable people, and in this time of pandemic we feel a sense of abandonment and frustration – he claims Giusy Fabio, vice president of the Italian Fibromyalgia Syndrome Association (Aisf) – but for the others we are imaginary patients, hypochondriacs and lazy. Of the “invisible”. In the workplace we are without protections or rights. There are patients who have been denied the change of job and have suffered mobbing. In the end, amidst the great physical and mental suffering, they are often forced to resign otherwise they are fired. It happens to 50 percent of patients in the event of a recurrence of the disease ”.
Yet “something is moving. The bill 299 – reports the vice president of Aisf – presented in April 2018 by Senators Boldrini and Parrini in the previous legislature, which proposes the recognition of fibromyalgia as a disabling disease is continuing the process in the Senate although, after the discussion and amendment phase, due to the pandemic, everything stopped. Senator Paola Boldrini is having several interlocutions with the Ministry of Health in this period to continue and bring this legislative process to a conclusion. In addition, on 10 December, the commission for the updating of Lea’s met and a proposal on the agenda was the inclusion of the Fibromyalgia Syndrome in the essential levels of assistance. The Fibromyalgia dossier is currently being examined by the Commission “.
The new law provides, among other things, that the State promotes the prevention of the Fibromyalgia Syndrome and the training of medical and assistance personnel, as well as guaranteeing adequate health protection.. “The legislation also provides for the recognition of specific associations as an essential component of the protection system – again Giusy Fabio – that there is an exemption code, that reference centers are created, a national register of the Fibromyalgia Syndrome and an information campaign and awareness of the disease “.
Another problem is patient management (and the treatment of the disease) which changes depending on the region in which you reside. “In some regions – explains Fabio – fibromyalgia was recognized with the identification code, in others the Pdta were approved (Diagnostic therapeutic assistance paths), established reference centers. The latter do not actually work, furthermore in some regions the guidelines are not known and correctly executed by doctors as no training and awareness campaign has been launched. Many resolutions, resolutions, decrees, bills written are only on paper, but not implemented for the good of the patient, who is still forced to wander around before reaching a diagnosis and is forced to pay for all types of therapy and services ” .
As every year, May 12 is World Fibromyalgia Day to promote awareness of this still little known and difficult to diagnose syndrome, but also to draw attention to the needs of patients, often considered “imaginary patients”. An opportunity to keep the spotlight on the disease even in the time of the coronavirus.
“The specialist indicated in the guidelines for the diagnosis and treatment of Fibromyalgia Syndrome is the rheumatologist – underlines Giusy Fabio -. There is no biomarker and the diagnosis is one of exclusion. To date, it is necessary to exclude other pathologies or confirm if there are concomitances, based on the diagnostic criteria originally defined in 1990 by the American College of Rheumatology, and which have had several updates, the latest in 2016. It is important to emphasize that the criteria do not provide the finding of clinical signs highlighted by the doctor through the patient’s physical examination, an essential element in the diagnostic process of the pathology “.
From a multicentre study that the Ministry of Health has requested from the Italian Society of Rheumatology (SIR), the levels of severity of the disease have been established on the basis of which an exemption code will be assigned. “The same SIR, with the patronage of the Ministry, has created the Italian Registry Fibromyalgia – underlines Giusy Fabio – an important tool that allows you to have the widest Italian statistics of fibromyalgia patients. The epidemiological and clinical data obtained through the registry allow to broaden the knowledge of the disease in the hope of improving the diagnostic / therapeutic path and encourage a personalized approach and also to evaluate the socio / economic impact that the disease has “.
Applying for disability for fibromyalgia patients is also an obstacle course. “You can apply for disability – concludes the vice president of Aisf -. Your general practitioner sends a certificate / request to INPS, after which the patient is called to the commission for the assessment of his status. To date, however, invalidity has never been granted without an appeal being made and in the absence of a comorbidity. Many medical examiners either do not know the disease or do not consider it disabling. There is no score for the various symptoms, in severe cases a score by analogy is used. There are very few cases in Italy in which invalidity has been recognized and granted ”.