“A silent and invisible pain that gives no respite”: this is how those suffering from fibromyalgia describe their daily suffering. To date, there is no definitive cure for these chronic rheumatic patients: so, in an attempt to relieve pain, they sometimes risk coming across “miraculous” remedies advertised on social media but without scientific value.
“The pain of these people is not understood – confirmation Antonella Celano, president of the National Association of People with Rare Rheumatological Diseases (APMARR) – neither by general practitioners nor by families. So there are those who seek help and answers online, relying on phantom healers, self-styled specialists who offer expensive but never decisive treatments. IS the pandemic has exacerbated patients’ feelings of frustration. Not seeing your doctor, not talking about the malaise that accompanies the days and nights, not being able to interface with those who know the problem and understand its psychological dynamics, made many of them feel inside an invisible cage “.
In a time of emergency like this, people with chronic diseases are more vulnerable, both for difficulties in home care and for access to treatment. For all of them associations are fundamental, for many they represent the only point of reference. “The main requests of fibromyalgia patients – explains Celano – they concern information on specialists and centers of the National Health Service, which can also be reached in this particular historical moment, without having to go to private offices or specialists. They ask for advice and suggestions on the management of the most serious symptoms and reassurance in the event of the appearance of new symptoms or a worsening of those already present ”. Questions such as “will I get well?”, Or “is there a cure?”, Or “why is the disease not recognized?” or “why can’t I be disabled?” are more and more frequent. But these patients “mostly complain of not being understood by their GP – Celano again – and of feeling treated like” crazy “. The chronic pain is there but it is not seen, however it impacts on the loss of work, on interpersonal relationships and on the family sphere “.
“Fibromyalgia patients contact us – he reports Silvia Tonolo, president of the National Association of Rheumatic Patients (Anmar) – because they have felt alone and abandoned for a long time. At the start of the pandemic, they witnessed the closure of clinics and hospitals, the postponement of visits and treatment plans. Furthermore, there are no drugs for rheumatic patients because they are used for Covid patients. They feel misunderstood and the lack of doctor-patient relationship, also fundamental from a psychological point of view, has increased their sense of frustration ”.
Vaccination, after the fear of Covid, is just yet another concern. “Many patients – Tonolo recalls – call our toll-free number 800 608 519 every day to get answers: they ask us if, how and when they will be contacted, if they should go to the general practitioner and / or stop treatment before undergoing vaccination , if they will be able to go back to work after vaccination, if the risk of adverse reactions is worse than that of contracting the virus. The confusion created by the differences between the Regions on vaccination priorities reigns supreme. Not to mention the too much information, often contradictory, that comes to us from newspapers and TV. For this reason, together with the coordination of associations of patients with rheumatological, immunological and rare diseases, we have repeatedly urged the Minister of Health, the extraordinary commissioner for the Covid-19 emergency and the president of the State-Regions Conference. We ask the institutions to consider these patients vulnerable, fragile, forced to take important drugs (immunosuppressive and biological) and therefore in need of priority. Fibromyalgia Syndrome does not have a national exemption code within Lea (Essential Levels of Care), so it is up to the specialist to decide which patients he deems vulnerable should be vaccinated first “.
“Even before the pandemic, people with fibromyalgia – underlines Celano – were living in their lockdown, due to the disease. Having to postpone a medical visit is a cause for stress and stress is a trigger of the disease. Whoever contacts us is as if looking for an outstretched arm to cling to. The digital medium comes to the rescue but does not always manage to dilute the desolation ”.
Can fibromyalgia patients manage their disease on their own? “Absolutely not – says Tonolo – because they always need a relationship with the doctor, which is also fundamental in terms of therapeutic adherence. Sometimes even a single word is enough for the patient to feel taken care of. Also pain management is not easy, the drugs used must be shared with the specialist, self-management involves harm to the patient“. For people with fibromyalgia even therapeutic continuity “is an obstacle course” according to patient associations.
“Therapeutic and care continuity is not only not guaranteed – the president of Apmarr, Antonella Celano, has no doubts – ma, since Fibromyalgia is not recognized and therefore not present in Lea, in Italy there are enormous differences between the regions. In some the syndrome is recognized, in others it is not, therefore the management is not only different from region to region, but in most of them it is completely non-existent ”. “We have tried to guarantee therapeutic continuity everywhere – affirms the president of Anmar, Silvia Tonolo – thanks to the sharing with Aifa of our needs and the difficulties in finding therapeutic plans, due to the closure of many structures. Continuity of care is patchy, in some regions some clinics have been closed since March 2020, also to the detriment of the disease itself, with important exacerbations and comorbidities that have arisen. This has led to a shift in the waiting lists which are now out of control ”.
Fibromyalgia is an “invisible” disease, it is not detectable with laboratory tests or with radiological ones, those who suffer from it are apparently healthy and are not “taken seriously” by family members, friends, work colleagues and sometimes even by the doctor. “Living invisible is humiliating – admits Celano – having to continually demonstrate that you suffer, or that your pains are real is really frustrating. Even the relationship with the doctor turns out to be disappointing most of the time, especially when you hear “he has nothing” or that “fibromyalgia does not exist”. These are words and phrases that bring despair, that destabilize, that are equivalent to being told “you do not exist”. One feels without identity, abandoned and without the prospect of being able to get better. Living with a pathology such as Fibromyalgia not only makes you invisible to the whole world, but even petrifies you, up to cancel you. Specialists, GPs, psychologists, no one takes you seriously and you are labeled as depressed or hypochondriac, you cannot complain to your family, you are fragile, forced to keep everything inside with the fear of being judged. That’s why you become transparent ”. “In addition to having a very bad quality of life – concludes Tonolo – fibromyalgia patients are often also considered imaginary patients and this weakens them not only physically but also psychologically”.