Pain spread throughout the body, especially back and neck, fatigue, insomnia, depression and anxiety. Fibromyalgia is an insidious disease that affects about 2 million Italians, generally middle-aged, but especially women of about 40 years of working age, severely compromising the quality of life. To better understand this still too little known pathology, a quantitative survey was conducted by the Piepoli Institute, in collaboration with Aisf Odv and the non-conditioning contribution of Alfasigma. The survey involved carrying out 1,148 interviews to test the level of awareness, learn more about the needs and improve patient care paths.
One in two patients with fibromyalgia feel they are in poor health, confirming the fact that it is a disease of great impact on the life of those affected. Only 14% declare themselves in good health and just 38% are passable. As further evidence, the study reveals that many (about half) feel limited even climbing a flight of stairs, and nearly all have restricted working together with other daily activities. The pain and the emotional state connected to the disease determine, in fact, limitations in work in two cases out of three and in social activities in 56% of cases. The sad emotional state does not significantly flex over the years, as if to say that one does not ‘get used’ to the disease. Compounding the picture is the fact that 8 out of 10 respondents feel misunderstood by others.
“We can define it as an invisible disease, it does not have a biomarker, an evident clinical damage, it does not have a cure – explains Giusy Fabio, vice president Aisf – Patients are considered imaginary patients, hypochondriacs, visionaries and their pain, their suffering is invented in the eyes of others. Also because, although it also involves men more and more frequently, it is often women who are apparently healthy and generally good-looking. Even today, some doctors argue that fibromyalgia does not exist, that it is not a disease, but just a “fad”. Misunderstanding, not listening, not being understood frustrates those affected, creating a sense of loneliness that slowly leads the patient to isolate himself. Here the relationships are tilted, the patient gives up and becomes totally succubus of the disease. An institutional communication campaign would be needed to remove the stigma “.
Moreover, those who suffer from it, also because they are not very sensitized, usually wait a long time, even 5 years before obtaining a diagnosis. Symptoms, in addition to pain, are often linked to fatigue and 9 out of 10 suffer from other diseases. About 6 out of 10 respondents are undergoing drug therapy, and as many as 8 out of 10 take different supplements. Fortunately, adherence to therapy is good in most cases. “Many fibromyalgia patients use medications and supplements that can help improve mood and reduce fatigue and pain, the main symptoms of the disease. – indicates Laura BazzichiOperative Unit of Rheumatology of the Pisan University Hospital – Particularly used is the acetyl-L-carnitine molecule which helps a lot, rapidly improving mood, restructuring muscles and reducing pain “.
The survey reveals that a significant proportion of patients (63%) experiment with alternative therapies and try the path of regular sports, in particular yoga and pilates. “Proper management of fibromyalgia syndrome should include an integrated multi-specialist approachbased on four pillars – adds Fabio – like patient education, fitnessunderstood as a set of physical fitness and nutritional aspects, pharmacotherapy e psychotherapyin which an appropriate use of drugs is accompanied by a non-pharmacological path designed on the needs of the patient “.
The survey shows that the main point of reference is the rheumatologist (58% of the interviewees), but the general practitioner is also listened to, with a not very high level of satisfaction (41%). On the other hand, what seems to be lacking are above all empathy and closeness. “The data shows a propensity of patients to take drugs for pain modulation (Ssr serotonin and norepinephrine reuptake inhibitors, tricyclics and muscle relaxants) which also serve as mood regulators (antidepressants) which, in my experience, are usually accepted with difficulty – adds Bazzichi – It is also good that the rheumatologist is seen as a reference point, because very often he is the most suitable specialist to make an accurate differential diagnosis. In addition to this, however, many patients also need to find 360-degree support and understanding from their family doctor and other professionals “.
Finally, caregivers are present only in 2 out of 10 cases, and usually support the patient in daily activities and, among the associations, very well known is Aisf Odv, known by 2 out of 3 patients. “A result of which I am proud, of which the whole Aisf is proud – concludes Fabio – is the percentage of how much the association is recognized and known, certainly in the face of a good job done in alongside and in support of patients. The survey shows a complete and well-defined picture, useful for continuing to follow some paths, starting others, so that we can give even more support, help and dignity to fibromyalgia patients “.
This is the sample interviewed: 28% are under 44 years old, 34% between 45 and 54, 31% between 55 and 64 and finally only 7% are over 65 years old. They come mainly from the South and the islands (36%), in 26% of cases from the North, and equally 9% from the North East and the Center. Almost half have been diagnosed for more than 5 years, only 13% for less than a year, and 2% do not yet have one.