A widespread pain in muscles and bones, persistent and disabling, the most typical symptom of the disease that has also affected Lady Gaga. Rheumatologists are asking for it to be included in Lea to improve social and health care
It takes even three years to be diagnosed with fibromyalgia, a rheumatic disease from which more than 1.2 million compatriots suffer. Little known until not long ago, when a star of the caliber of Lady Gaga confessed to being a patient, and very painful this pathology affects especially the women aged between 25 and 45 years. Those who suffer from it experience widespread chronic pain, often disabling, difficult to treat – he explains Roberto Gerli, national president of the Italian Society of Rheumatology (Sir), whose national conference opened today in Rimini – and in our country half of the patients, over 500 thousand people, have severe or very severe levels of severity. The pathology must be immediately included in the Essential Assistance Levels (Lea) in order to improve social and health care and the needs of patients are recognized and taken care of with adequate ways and times. Hence the need to establish the first national register, a project carried out by SIR with the patronage of the Ministry of Health, which to date collects data on 4,022 people recruited in various 45 specialized centers operating throughout the national territory.
An Italian registry to better care for the sick
We wanted to create a fundamental tool for patients, doctors and institutions – continues Roberto Gerli, director of Rheumatology at the Perugia Hospital -. The registry is currently the first in the world for the number of patients involved and allows for medical and scientific research to be carried out. We can improve the knowledge of the natural history of the disease, define the time interval between the onset of symptoms and diagnosis, monitor and update the diagnostic-therapeutic-care pathway (PDTA). Finally, it allows us to quantify the outcomes and the social-economic impact on the entire community. We have had several meetings with the Ministry of Health and its office for Lea’s to define, based on the data collected, how best to organize social and health care in our country. Numbers in hand, in short, it is possible to better understand how many Italians live with fibromyalgia in a more or less severe form and, consequently, to organize different levels of assistance. customize treatments and to prescribe the best and most suitable treatments for every sick person. As soon as possible, because various scientific studies have shown that therapies tend to be less effective when the person has already suffered from the neuro-inflammation underlying the disease for a long time.
Symptoms not to be underestimated
Fibromyalgia characterized by a severe widespread musculoskeletal pain, often serious and disabling, which must be addressed with specific care – he underlines Fausto Salaffi, associate professor of Rheumatology at the Polytechnic University of Marche and national manager of the Fibromyalgia registry -. In most cases it is not recognized early and on average the diagnosis comes after years (between three and five) from the onset, during which those concerned wander among different specialists without finding a solution. The main symptom is the persistent musculoskeletal pain localized in the spinal column and limb muscles, but frequently affects the whole body. The disease is by far more common in females than in males, at a ratio of 8 to 1, and the causes are still largely unknown.This painful syndrome is accompanied by severe tiredness, sleep disturbances, headache, anxiety and depression – clarifies Salaffi -. Often there are also symptoms affecting the gastrointestinal system such as irritable colon, constipation or diarrhea. Fibromyalgia does not cause functional damage but causes continuous pain and difficult treatment.
Therapies: acting on several fronts
It is not difficult to understand how much the quality of life of patients can be compromised, between continuous suffering and daily difficulties, including those to continue their work. The treatments are different and range from administration of analgesic and muscle relaxant drugs to physical therapy aimed mainly at reducing muscle tension – says Gerli -. There is no definitive therapy, but we can act on several fronts to help the patient to live with the disease and alleviate its symptoms. Fibromyalgia could also be managed by resorting to telemedicine, which allows the territorialization of certain health services and the possibility of reaching patients at home remotely. As Sir, we activated the iARPlus TeleMedicina Web platform involving 44 rheumatology centers throughout the country – adds Salaffi -. In one year of activity, we encountered some problems, above all bureaucratic-administrative and in fact, strategies should be implemented at a regional level to report on televisions. At the same time, the great potential associated with new technologies was highlighted, especially as regards the patient’s adherence to periodic checks and treatments.
Rheumatic patients and Covid: third dose to do
At the SIR Congress, which sees the participation of over 1,500 specialists from all over Italy, the data collected by the scientific society in the register relating to Coronavirus and Rheumatological Diseases, launched at the end of March 2020, were also presented. the data relating to 1,698 men and women: 33% affected by rheumatoid arthritis, 31% by spondyloarthritis, 19% by connective tissue diseases, 7% by vasculitis. 28% of Covid patients were forced to hospitalize to receive care and treatment. Of these, 29% required non-invasive ventilation while 9% were intubated. The updated data reflect some trends that we had already encountered in the very first weeks of the pandemic – concludes Luigi Sinigaglia, past president Sir -. Rheumatology patients, if affected by the Coronavirus, have a more severe outcome than the general population. The situation is even more difficult and compromised in the over 65s and if there is the presence of other concomitant diseases such as cardio-pulmonary ones. This is why we renew our appeal to all sick people and caregivers to scrupulously follow all the rules of hygiene and social distancing. Obviously, anti-Covid vaccination is recommended, even the third dose as soon as possible as fragile patients.
November 25, 2021 (change November 25, 2021 | 17:11)
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