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Fibromyalgia, the invisible disease (for others)

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Fibromyalgia, the invisible disease (for others)

Spending years with gastrointestinal disorders, pain spread to every part of the body, chronic fatigue, waking up in the morning without ever feeling rested. Then, one day, see a documentary for fun, after all who doesn’t know Lady Gaga? And suddenly recognize yourself in the symptoms. This happened to Susanna, suffering from fibromyalgia, who took five minutes of “Five Foot Two” to understand what for years had been just a suffering without a name. Yet, that name, she was desperately looking for him.

The answer? Stress or fatigue

“It’s stress!”, They told her, “not everyone handles it the same way”, “You’ll just be a little tired”. And you really become lazy, because the pain and worry for a body that asks for help without being able to receive an answer take away any possibility of rest. In common thought, only so-called “rare” diseases need time and obstacles to overcome in order to obtain a diagnosis. In fact, the doctor tells us William Raphaelexpert in pain therapy, fibromyalgia affects 2.5-3.5% of the world population, in Europe alone 14 million people, with an incidence almost purely female (80-90% of cases).

Severe fibromyalgia for over 500,000 patients

by Mara Magistroni


Eight years for a diagnosis

In these percentages there is also Susanna, who took more than eight years to obtain a diagnosis. As for many people suffering from invisible diseases, for her too this was a moment of relief and liberation, which preceded a long and hard work of accepting the disease and its limitations. In her case, in fact, all this coincided with the need to leave work due to the now disabling symptoms and a fast-paced lifestyle, in which she was not allowed to stop and listen to her pain, under penalty of missing productivity. Admitting to having to change goals and paths built long ago often requires psychotherapeutic help, which is added to the already abundant management and therapy costs of fibromyalgia. A cost that, in Susanna’s case, is around three thousand euros a year between visits and medicines.

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A therapy for 4 years

In fact, she has been following drug therapy for four years and, although sometimes it changes due to the periods of life she is going through or with the passing of the seasons – the pain gets worse with the wet cold and improves with the dry heat, Raffaeli points out – she has succeeded. to find one, after several attempts, that is right for you. But it was not easy: even the medical textbooks underline the difficulty in finding a cure that is effective because the disease, mainly affecting the female anatomy, has not been studied in depth, often suggesting, as happens for the most part. of the invisible pathologies affecting women, that it is a psychiatric problem.

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We need a multidisciplinary plan

Indeed, the anti-inflammatory tablet is not enough, but it is necessary to act according to a multidisciplinary plan in addition to the medicines which, often, do not give any results. This, Dr. Raffaeli knows well: “If the headache responds very well to anti-inflammatory analgesics such as NSAIDs or paracetamol, or depression to antidepressants, defining a cure for chronic daily pain is very complex”. It is necessary to work on a new lifestyle, which includes a reasoned diet, methods to reduce stress and a certain type of movement, essential for strengthening the muscles and for releasing endorphins, and therefore to partially combat chronic pain.

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Learn to listen to yourself

But what Susanna had to learn from scratch, in order to come to terms with a disease that has no remedy, is to listen to herself: to give priority to her body and what she felt, following it. This was possible thanks to psychotherapy, a path that is as painful as it is necessary for those suffering from chronic pain and who, from one day to the next, see the projects of a lifetime taken away. The feeling of failure is, in these cases, perhaps the strongest pain after the muscular one. Therefore, it is not only the body that suffers from fibromyalgia: it is difficult to accept becoming another person, it is difficult not to be able to make the normal efforts required by daily life. Susanna suffers from the so-called fibro-fog, that is a feeling of mental confusion that causes poor concentration and memory lapses, so much so that she forgets what she has just done.

One becomes invisible with one’s pain

Those who suffer from fibromyalgia such as Susanna, vulvodynia or other ills not yet recognized as real diseases, end up being invisible not only to a health system that does not know and cannot protect patients from an economic and medical point of view, but also to all the people who are part of their daily life. Not having visible pain or tests that can actually certify the legitimacy of their pain, women like Susanna are silent and lose confidence even in their own feelings.

Where the state is absent, therefore, trust in ourselves must intervene: believe in pain and not be afraid to expose yourself by talking about it not only with doctors. It is necessary to overcome the reluctance of those who believe that we are lazy, depressed or very stressed. Susanna, with her story, wants to teach us just this: not to be afraid to stop and rebuild, and to do it by raising her voice.

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