My story

“Planes fly. Cars drive themselves. Computers calculate. If medicine is based on science, people are cured. If aircraft design is based on science, planes fly. If rocket designs are based on science, they reach the moon. Science. It works, f ** k. "
Clinton Richard Dawkins

 

I think it is right that I tell you my "clinical" story: the story of my "illness" is actually indivisible from "my story". Let's talk about pain, not picnics (although my checkered shirt and buttercups aim to lighten the mood), so I'll tell you what happened to me.

If you want to ask me some more specific questions, write to me without problems.

I was twelve when I fell out of school and crashed onto my back with incredible violence. I don't know what exactly the phrase "see the stars" derives from, which is used to describe being struck by a strong and sudden pain: the fact is that I saw the stars. And it wasn't a bright flickering in front of my eyes: I took a walk in the middle of it. And from that day my long and very complicated love story began with chronic pain.

Over the years, my fall has paved the way for an enviable collection of pains of every kind and neurological symptoms, which I quote more or less in order of appearance: back pain (obvious), stiffness, pain in the hands, in the arms , to the legs, to the feet, cocchygodynia, burning eyes, stomach pain, idiopathic colitis (c'est-à-dire, with no apparent cause), cystitis (idiopathic as well), vulvodynia, neck pain, paraesthesia, tooth pain I didn't have, pain in scars of wisdom teeth extractions, perennial headaches, migraines, insomnia, occipital neuralgia, trichodynia. Obviously the appearance of each symptom was accompanied by a series of tests that I miss a laboratory guinea pig. And no medicine worked, except the Rinazina for the plugged nose.

Until I was twenty, I had the right to be considered a crybaby. After that, I joined the ranks of the "hysterical fools", in which I remained for most of my existence, at least until March of the 2018, essentially because my pains were not visible anywhere, not on x-rays, magnetic resonances or exams of blood: I was the only one to perceive them, so the doctors deduced that they were in my brain. And I, who am a sentimental, somewhat obscure type, with a passion for nineteenth-century French literature, I indulged them. Living was a daily undertaking.

Obviously I was anxious. Is it possible not to suffer from anxiety in this state? Naturally also anxiety became a problem for which I was blamed for those who should have helped me: after all I had nothing and therefore my pains were imputed to a presumed psychological fragility.

The doctors I went to, because I kept going to the doctors, hoping to find someone who could help me, they said that I was a masochist who suffered from tremendous chronic pain in every part of the body simply because I was anxious, who didn't want to be happy, who liked to be constantly in the spotlight. One day, for fun, I counted the health professionals I have seen since my twenties: more than thirty, including doctors, physiotherapists, osteopaths, chiropractors, psychologists and nutritionists. Physiotherapists, osteopaths and chiropractors were normally convinced that, with their intervention, I would have been better, which generally did not happen. This led most of them to discharge me like a psycho, reaffirming that, if I was ill, it was just my fault. Others tried every kind of technique to make me feel better, and they even succeeded, maybe just for a few hours: in any case I remained a puzzle without a solution.

I was helped by a doctor who prescribed me an antihistamine diet, which allowed me to reduce the painful symptoms in my limbs, but it was extremely deprived, and difficult for me to sustain in the long term. At least I had the feeling that someone had understood something about it.

A separate chapter should be opened for the "personal trainer" category, with no preparation for persistent pain, whose goal, to the detriment of my clinical picture, was not to improve my chances of movement, but to turn myself into a bomb sexy for next summer, with the result of physically destroying me and taking me to see sport and movement as something diabolical, useful only to worsen my physical symptoms.

Even psychologists said I didn't want to get well: they were the experts of the meanders of the soul, which the doctors cannot see. So I wanted to think they were right. So, to please them, I played the crazy part: somewhere within me there had to be an explanation for all that pain and, of course, if it is not possible to see that pain anywhere in the body, the pain must be in the head. I didn't believe it completely, but at that point I saw no other explanation. The word "fibromyalgia" came into my life thanks to a young doctor who, knowing me personally, did not believe that my symptoms were exclusively psychosomatic. This was an important step for me, but not much changed from that diagnosis: I had a label, as weak as a disease that cannot be diagnosed with medical tests (the famous "chronic pain garbage can"). Even in my case, over time, it was clear how my symptoms did not correspond to the guidelines for diagnosis. However, I felt reassured but, after all, my pains and the negative judgment of the people remained: fibromyalgia or not, I remained a psychopathic complaint.

I found myself thinking, at that point, that I had only one life, and that nothing, not even the pain that was clear at that point, would not kill me, could have forced me to live it badly. And here twenty years had already passed, from the famous twelve of the fall. It didn't all happen at once, but I began to think that if no one was able to help me, I had to help myself and I knew instinctively that my treatment would be more effective than all the unnecessary ones that doctors had prescribed for me over the years (benzodiazepines, muscle relaxants, opiates, cortisone drugs, NSAIDs, beta-blockers, local anesthetics, antibiotics, vitamins and various supplements).

I found a shrink that helped me talk about my pain, of the way of perceiving it, of its meaning, of its meaning: the goal was no longer to eliminate it, but to live with it, without going mad, to talk to it, in some way. I discovered a series of tricks that made me (and make) me feel better, like doing a sauna, or a hot shower, meditating, having a massage. All this took time and mental resources and money, but somehow I became stronger than the pain. That was enough for me. It was tiring and expensive, but it was enough.

I searched for information material on fibromyalgia, allodynia and chronic pain, but often I ran into incomprehensible news, articles botched or far from my clinical picture, forums that only hurt optimism and mental order: I didn't need those what's this. I decided to cut the bridges with everything I didn't think was useful: I wanted to stay focused on my path. And, at that point, a miracle happened: just when I wasn't looking for it or I wasn't expecting it.

I had decided to get back on my feet, in the literal sense of the word: I needed a strong body. The years spent listening to the doctors who told me not to move, had reduced me to no longer being able to stand up, and I no longer had any intention of continuing like this. While I was looking for someone who could help me do this, understand something about "chronic pain and training", I met a physiotherapist with a master's degree in pain and exercise physiology. I looked at him as if he came from another planet. He spoke of chronic pain with full knowledge of the facts. And from that moment, everything has changed. Thanks to him, and to the neurologist to whom he addressed me, I was finally able to begin my course of treatment.

Today I still have bad days. But a bad day is nothing compared to a "bad life" to a sick person for work, 24 hours on 24, to something that gnaws time at you, that takes it away, that tires you, obstructs you, that makes everything titanic: getting out of bed, studying, reading, thinking, standing, sitting, queuing up your hair, make up, simply be. And anyway, now I know that somebody can help me out there. Before the beginning of the 2018, frankly I considered doctors little more than barbers and I watched Grey's Anatomy as if it was about science fiction (now, I do not mean that it is not slightly sci-fi, but it has to do with something that exists, namely modern medicine , not the aliens. Well, to me it seemed to tell of aliens): no medicine, no procedure, nothing at all never worked on me.

Now I am well, or at least much better, and my first reaction to this new well-being was anger. How is it possible for a person to live for twenty five years as I have lived? How can a health professional not know that there are drugs and strategies for treating chronic pain? Above all, how can doctors not know that painkillers do not work to treat chronic pain and therefore it is not you who has something wrong, but are the drugs that prescribe you that will never work? Worse: how can we ignore the existence of chronic pain?

Do you want my diagnosis? Chronic mixed pain: my disease is pain, a pain of "different types", in this case neuropathic e nociplastic. The latter type of pain, in particular, cannot be diagnosed because it does not emerge from standard diagnostic tests, but even if it cannot be seen, it exists. Simply because it cannot be seen and touched (even if a competent clinician can identify it very well), it does not mean that it is not worthy of attention and care. And it's terrible. Living with persistent pain requires incredible determination. Now that I feel better, I find myself with energies that in the past I used simply to survive, to manage pain on a daily basis, and that now I have to understand how to invest.

I understand that no one understands how to live with chronic pain. We are not dealing with a toothache or migraine, but with persistent pain, which invades the whole body and takes on various, original, deviant forms. I don't think I can forgive the ignorance of the countless professionals I met on my journey. I cannot forgive their condemnation for my alleged emotional fragility, because even if I was suffering from psychosomatic illnesses I would still have had the right to be respected.

All I want now is to make people aware of the existence of chronic pain, because it is clear that there are a number of obstacles for doctors, institutions and patients themselves to recognize this type of pain.

There are pains that do not heal with painkillers, even with the strongest. Feeling persistent pain is not a shame. If the pain does not pass, this is not automatically a sign of psychological weakness, on the contrary: living with chronic pain requires great willpower. Pain is a disease, e people with chronic pain have the right to be treated, as every patient deserves, do not turn away, as hopeless cases, even more so today, when neuroscience tells us that there are real, concrete, possibilities for recovery.

In this blog you will find my story told more widely also in these articles (maybe you find yourself there):

The beginning of (my) story 

This instead is the story of the love story with chronic pain, made with my words, during an information evening on persistent pain from EDUMED in Brescia.