True story: fibromyalgia taught me to slow down

by Monica Marelli

Simona has learned to live with a pathology that is too often misunderstood, fibromyalgia. Here his testimony collected by our journalist

The  fibromyalgia  has become “viral” on the company since the singer  Lady Gaga  has revealed that because of this pain syndrome had to cancel the concert. However, it  is still unknown to most people. For this reason the Italian Fibromyalgia Syndrome Association  continues to  fight for the social recognition of this pathology which affects 2 to 3 million Italians  (9 out of 10 are women). To date, European nations have included fibromyalgia among the chronic painful pathologies, but not Italy, where the patient has no right to assistance because it is not recognized as a disabling disease  . 

Below you can read the story of Simona Villa ( in the photo above ) a patient who told us how she lives with this disease difficult to diagnose and how she managed to transform it into a sort of ally that warns her when she is exaggerating. 

THE HISTORY OF SIMONA

It was the end of April 2011, I was 46 years old and I was going to spend a beach holiday with my family. I was calm because I had just taken the path I wanted: to become an expert in facial reflexology. A demanding job, even from a physical point of view. But the effort didn’t frighten me , I was so gratified by my new professional role that I rarely felt it. for this reason I was puzzled when, shortly before my departure, I began to feel exhausted, without strength. I remember the effort in preparing the bags and making certain movements . I had never experienced such tiredness!

A bad holiday

The trip by car was very stressful : I had pains everywhere , my legs were stiff and I feared a feverish rise . Arrived at the destination, I arranged the clothes and the rest of the luggage.

To my surprise, once I got into the bed, the physical discomfort increased instead of decreased: I couldn’t move, I had a headache , an unusual stomach ache and even chatting had become tiring. Not to mention the eyes , which I could not keep open, so much was my sense of exhaustion. In some moments I even felt like my mind was clouded.

After three days with no improvement, I decided to call my primary care physician, who suggested some paracetamol . Upon returning, however, I should have had an MRI scan on my head . Needless to say, the anti-inflammatory did not have any effect and I started to worry seriously: what the hell had I taken to feel so bad? On the fifth day of vacation, I had a moment of relief and began to enjoy the sun on the beach, together with my son and husband. I was already forgetting the malaise when again, after two days, he came back stronger than before.

Exams? All negative

Back in Milan, I had blood tests and magnetic resonance imaging which revealed nothing abnormal. In the meantime, muscle discomfort and pain had disappeared again. I went back to work and gradually the worry disappeared completely, until I forgot what had happened.

But after a few weeks I started to feel bad again . The crises appeared and disappeared intermittently, some were short-lived, others several days. The general practitioner no longer knew what to tell me. So I endured everything with resigned patience. I learned to accept the ailments, which sometimes reappeared after months of respite.

I “felt” and recognized each of my contracted muscles , reaching an awareness of my incredible body. Of course, the discomfort was there and I could not pretend anything. The total lack of energy did not allow me a truly restful rest, I could not concentrate on reading a book, in some moments I seemed to see double and I often struggled to follow the speeches. The tachycardia was a constant company, and getting up in the morning a massive undertaking. In the darkest periods, moreover, pain assailed me everywhere: at the joints, in the back, even in the teeth, nose and eyes. I was sweating a lot and my legs got stiff as if inside a plaster, they could no longer hold me.

The meeting with the rheumatologist

In the spring of 2017, the attacks became increasingly close and devastating and I had to give up my job . Not only that: no more social life , not even a cinema with my husband. Finally, in June, I went to my gynecologist for the annual check-up, told him about my still unnamed malaise and he prescribed further blood tests.

The outcome was still negative, and he advised me to contact one of his rheumatologist colleagues. After reviewing mountains of tests and listening to me for a long time, she looked me in the eye and said, “She’s probably suffering from fibromyalgia .” I thought: well, finally a diagnosis, I can hope for therapy. The doctor explained to me that there are no clinical tests that can confirm the disease, and that the diagnosis is often made by exclusion .

I discovered that this syndrome, which involves pain and stiffness in the muscles, tendons and ligaments and which is accompanied by a profound asthenia , has an unknown origin. It can be triggered by a stressful event or physical trauma but there are still unsolved questions. Many experts say that there is an underlying state of anxiety or depression . But it is obvious that those who live in these conditions do not sprinkle with joy and find themselves in a situation of constant psychological instability.

The comfort of the Association

The fibromyalgia is a misunderstood disease and is therefore essential not to feel alone. For this reason the rheumatologist suggested that I contact AISF , the Italian Fibromyalgia Syndrome Association. Thanks to them I also found the doctor who is treating me. Today I take painkillers and a drug aimed at improving the quality of sleep , I do 30 minutes of stretching a day and I use relaxation techniques that help me to release muscle tension.

The psychological aspect is also important, and for this reason I entrusted myself to the behavioral psychologist of the Association. Little by little I got my job back in hand and I started living with serenity again. I have also adopted rules of life : for example, do not overdo it but learn to measure the fatigue, not wanting to get to everything but make choices that, with a pinch of healthy selfishness, are good for me first. In short, I have transformed fibromyalgia into a kind of friend who warns me when I am exaggerating. Then I stop and start listening to my body .

THE CARE MUST BE CUSTOMIZED

The fibromyalgia syndrome  is manifested by a range of symptoms so broad that there is no single therapy. This should be customized according to the complaints reported by each individual patient. “The therapeutic approach must be multidisciplinary and based on three types of intervention: physical-rehabilitative, psychological and pharmacological”, explains Dr. Alberto Batticciotto , specialist in rheumatology and medical director of the Asst Settelaghi of the Varese Circolo Hospital, as well as a member of the board of directors of the Italian Fibromyalgia Syndrome Association. “The molecules that have proven efficacy (and that have received FDA approval for this condition in the United States) are duloxetine , pregabalin andmilnacipram,  able to act on pain modulation.

The use of muscle relaxants, anxiolytics and analgesics can also be useful “, continues the expert. Practicing regular physical activity is then fundamental . «The physical-rehabilitative approach is one of the pillars of therapy: it reduces pain and muscle contracture. The best training? The yoga , the stretching , thai chi chuan and all disciplines that lengthen the muscles, training specifically the most painful. It is also important to get into the habit of walking , cycling and swimming ».

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