The elephant in the room. Persistent pain and neurocognitive problems.

Moving has always scared me.

I've never been in full control of my body, for some reason I don't know exactly, it's always been stumbling, comes after the mind, gets filled with anxiety, from fear of falling. My diversity in this sense has always weighed on me. A diversity inside, because outside there was nothing different. There is nothing.

Still, there is so much different.

Who knows from outside what you think of me. What do you see. Who do you see.

From inside, you often feel a lot of fatigue. If a certain thing requires a certain amount of effort for a “standard” person, in general I have to do twice as much, with my body and my head.

The inability to control the body, which has dramatically intertwined with persistent pain, inevitably led me to focus on the brain. Read, study, learn, know. Here, my definition as a person, for years, came from there.

I have read many reviews that tell me, my experience, the experience of the symptoms of a person with persistent pain.

A Systematic Review is an instrument of scientific research whose aim is to summarize data on a certain topic, with attention to the sources, which must be highly referenced, to identify all the evidence relating to a specific scientific question.

Finding yourself in Review on persistent pain, on Central Sensitization, always has a certain effect.

Finding yourself thinking about the neurocognitive problems that persistent pain brings after reading a review, however, was excruciating for me.

I have always known (and then read) that persistent pain causes cognitive problems. Finding written black on white, has something devastating: if persistent pain does not matter to anyone, the cognitive problems that pain brings with it, it matters even less, and yet they are there, elephants in a room, which they become, for those who judge you or make you a diagnosis, if you are lukcy, "stressed", or one with a bad slacker attitude if you are not.

This is not a path made of full stops. It is constantly evolving. Because I am evolving. Persistent pain, due to its multidimensional essence, requires me to tell you my own business.

Persistent pain is not something that you are here, he is there and in the meantime you can continue to have your life. He is hugging you tightly, to the point that you no longer understand who you are and who he is.

Well. Now that we are at the point where we understand a little more who I am, because the bulk of the pain has been removed and we can see that I am not a pathological plaintive, which languishes on the sofa waiting for her inexorable fate (that is, what the world evidently believed I was), I can try to deal with this somewhat complicated topic, without feeling like a perfect idiot.

Since 2003, the year in which my symptoms have definitely worsened, I have also started to experience cognitive problems. And this, for a person who identified himself with his "brain", was simply tremendous.

Let me explain: I started having short-term memory problems, the feeling that "I was missing words", of learning, of attention, an incredible slowdown in the speed of information processing. I lived with a perpetual sense of confusion. Health professionals told me I was anxious and stressed. I was afraid of having a dementia principle. In the meantime, my self-esteem was falling apart, and my life with her.

It is not easy to find yourself unable at any moment. Put your ambition aside, abandon yourself to a body and a brain (above all) that do not correspond to you. It means not recognizing yourself anymore, not knowing what to expect, having no plans.

Losing my brain was almost worse to me than losing my body. I've always been an intellectual, not an athlete. Finding myself unable to think was traumatic, frightening and painful. But I "was anxious" and in short, it was right that I stayed in the social rear, because with my way of being, so fickle, I was useful to the world as a wedding favor.

I thought that the anxiety (i.e. what they diagnosed me as anxiety, but I later discovered to be perceptual problems caused by the migraine) and the feeling of incompetence that came with it, had made me lose the ability to be mentally productive (I'm not considering the pain itself, of course). Instead I suffered from persistent pain.

Then I read a few things. With seventeen years of delay.

The basic cognitive processes of the human being are: perception, attention, memory, language and executive functions. All these functions are closely linked to decision-making and the emotional sphere. Each cognitive ability can involve a specific area of ​​the brain or be the result of a network of connections between different brain areas.

People living with chronic pain commonly have cognitive difficulties affecting short-term memory, attention, speed of information processing, speed of psychomotor reaction, higher-order skills such as planning and reasoning, mental ability to easily switch from one task to another, the ability to solve problems.

Although cognitive symptoms are not the primary concern of patients with persistent pain, they can be significantly debilitating and research suggests that it is worth tackling them.

First, cognitive inefficiencies can impact patients' response to treatment. Most of the therapies offered for the treatment of chronic pain require cognitive effort on the part of patients to manage their mood and to understand, remember and complete physiotherapy exercises.

Several mechanisms have been identified that can influence the cognitive abilities of people with persistent pain.

The first mechanism refers to the "limited resource theory", whereby the capacities, in terms of brain processing resources, are preferably assigned to the treatment of pain signals, due to their high biological importance, thus interrupting others cognitive processes.

The second mechanism is maladaptive plasticity. Over time, persistent nociceptive signals lead to structural and neurochemical changes in the nervous system. Changes in gray matter can be observed in the brain of people with chronic pain. These morphological and neurochemical changes that occur in the brain may be partially responsible for the cognitive changes that are commonly observed.

Furthermore, the contribution of secondary factors such as insomnia, fatigue, medications and mood disorders to the experience of cognitive difficulties should be considered, although further controlled studies are needed to clarify the contributions of each factor.

A promising recent development in this field of research is on the possibility of inversion of maladaptive plasticity, with the resolution of pain.

Imaging and neurocognitive studies have shown that pain resolution leads to normalization of cortical thickness and a reduction in cognitive deficit, however it is certainly necessary to understand what can be done to improve cognitive functions, despite the pain.

Certainly educating the patient about the causes and the maintenance of his deficits can be incredibly therapeutic in itself, it allows to legitimize his concerns and to help him understand the reasons for his cognitive difficulties.

After explaining to the patient the probable causes of the cognitive difficulties, the next logical step is to find together ways to better address them, using compensatory strategies. The purpose of compensatory strategies for cognitive impairment is not to repair the deficit per se. Rather, the focus is on reducing the disabilities that can result from those cognitive difficulties.

Compensation strategies may for example include the use of external memory cues, such as a diary or calendar for appointments, a pill organizer so that the correct medications are taken each day, alarms to keep track of time, and others electronic memory aids.

Compensation strategies have great potential and many can be found based on the patient's specific goals.

There is the possibility of carrying out interventions that stimulate altered or underutilized functions, to build or repair neuronal connections through neuroplasticity. For example, if a patient experiences short-term memory problems that cause him to lose the thread of the speech, a "restorative" approach could be to undertake training on memory.

Another solution available can be CBT psychotherapy, which teaches how to manage pain, with positive effects also on neurocognitive functions.

Lastly, movement has neuroprotective effects and improves cognitive function.

The best solution to cognitive problems of people with persistent pain is likely to involve a combination of approaches, individually tailored to the patient's needs based on their profile. There are certainly many translation possibilities in practice.

Everything should start from the recognition of persistent pain as a serious, pervasive, multifactorial problem. The solutions are there. Unfortunately, they seem distant horizons for many. Of course, it is not a valid reason to give up.

What do I do now to deal with all that? I use compensation strategies and try to take it ironically, but it's not easy. It is not easy not to have words, not to remember things, to struggle to move from one thought to another. And this is still tremendously difficult to accept.

But I believe in neuroplasticity and, basically, my path to change my maladaptive plasticity has only just begun. With the body, with that treacherous body that went away on its own, it went well.

Little by little, the brain will also change. He has already done so, after all. And if I lose my words, I can always laugh about it (even if it's not exactly easy for Miss Perfection).

 

Sources:

Optimizing Cognitive Function in Persons With Chronic Pain Katharine S. Baker, BPsySc (Hons), Nellie Georgiou-Karistianis, PhD, Stephen J. Gibson, PhD, and Melita J. Giummarra, PhD Clinical Journal of Pain

 

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Stories of electrical systems

The further I go, the more I know people with persistent pain, the more I realize how difficult it is to make people understand how chronic pain is a physiological problem (related to an organic function) rather than anatomical (related to the structure of the body).

We need to see what's broken in our body and, when we find something wrong, we cling with all our tenacity to that thing that, in an ideal body (where ideal would be better "fake"), not there should be, even minimal: that little thing there, becomes responsible for all our pain, even if it is not. But we see and we like this, it comforts us.

Maybe because my pain was abominable, migrant, "referred" not only to muscles and bones, but also to internal organs that were fine, so when it was explained to me that persistent pain is a problem of physiology and not of anatomy, the fact was obvious to me: "Here is an answer, finally".

But it is not so immediate for everyone.

To simplify, we can say that health professionals have a tendency to look for our pain in the building blocks (bones, muscles, etc.), while persistent pain is in the electrical system, in our nervous system (composed of the brain, spinal cord, from the sense organs and from the set of nerves that connect these organs with the rest of the body).

In short, we have a nervous system, which regulates all the functions of our body, and which nobody (none among the health professionals who have not been able to give us a solution) considers.

But how can the electrical system be seen? And how do you know if I suffer from persistent pain and not from an unknown disease that will lead me to the grave (which I know very well is the fundamental question for all of us)?

First of all, to put you at ease, there is one thing called differential diagnosis.

Differential diagnosis is a procedure that aims to eliminate pathologies based on the presence or absence of some symptoms, using a correct medical history, physical examination and various laboratory tests. The ultimate goal is a correct diagnosis. The health professionals you rely on are able to carry out a differential diagnosis, each for their own skills and, in the event of the slightest doubt, they are obliged to send you to another professional figure. If at the end of the process they tell you that you have nothing, you have nothing ... Nothing that will kill you, at least. Forgive me for being honest, but this is the topic.

One of the first things the practitioner will do is ask you to evaluate your pain. In fact, patient self-portrayals of pain are one of the most reliable sources of information and can help understand what kind of pain you are suffering from.

Some simply ask you questions about your pain, while others can use a more formal pain questionnaire, asking you to choose the words that best describe your pain (such as burning, tingling, sharp, dull, etc.).

After that, which seems to be unknown to most, there are tests that a person suffering from persistent pain can undergo. It is often possible to demonstrate a malfunction (or injury) of the nervous system in one or more modalities, by testing the affected areas with different types of touch, the temperature (using an ice cube or an alcohol swab) ... also take note of the presence and distribution of abnormal pain responses. These tests, a professional who deals with persistent pain, should know how to do them and explain to you what they are for, what they tell about your body and your pain.

But the proven proof of my pain?

Well ... All the questionnaires, questions and tests that are made to you are not the result of the madness of your physiotherapist or your doctor, but of the research on persistent pain, which has allowed us to understand how it works and therefore to develop questions and tests to recognize it and diagnose it. Your body, it is not true that it says nothing about pain. In reverse. It tells a lot. The proven proof you have it under your nose, even if it seems impossible to you.

Well ... yes. There are neuroimaging.

Thanks to neuroimaging in recent years it has been understood that the brain of patients suffering from chronic pain shows alterations with respect to function, structure and chemistry.

Neuroimaging is a relatively new technique that uses various methods for mapping the structure or function of the nervous system.

The use of brain imaging and other technologies has led to the understanding that chronic pain is mediated by the CNS ... It remains that the use of these tools as a standard diagnostic tool for persistent pain is inappropriate (according to IASP), because there are no protocols validated and this is potentially harmful to patients.

In short, even if in neuro-images we see, in people with persistent pain, the activation of certain areas of the brain, it is not possible to quantify the pain from the outside.

I can't tell you if you'll ever see pain. But I can tell you that the evaluation of chronic pain is made on the basis of your medical history, clinical examination, questionnaires ... It may seem trivial to you in our medical system made up of a thousand thousand specific tests for everything, but everything that comes to you proposed by a professional who really knows persistent pain, it is the result of research and clinical reasoning (ie the exercise of a set of complex skills, such as critical, reflective, creative thinking), not by chance.

Your body clearly tells the story of its pain. You need to know how to listen and have the knowledge to understand it, above all.

 

Schmidt-Wilcke, T. (2015). Neuroimaging of chronic pain. Best Practice & Research Clinical Rheumatology, 29 (1), 29–41. doi: 10.1016 / j.berh.2015.04.030
Davis KD, Flor H, Greely HT, et al. Brain imaging tests for chronic pain: medical, legal and ethical issues and recommendations. Nat Rev Neurol. 2017; 13 (10): 624-638.

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On coping strategies

How does stress work? And what can we do to manage and deal positively with [this] stressful situation?

Semi-serious advice to get serious and understand something more, by dr. Daniele Banquet of Move Physiotherapy - Galactic guide for physiotherapists.
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Have you ever heard of the COVID-19 virus? I think not. But if you try to open some social pages, maybe you will find a little something. After all, not everyone is experiencing a pandemic.

By now we are bombarded by TG, advertisements, newspapers, the Simpsons' forecasts. Everyone, even those who shouldn't, talk about the coronavirus. It is such a particular situation that it is not easy to manage. And the fact that it happened in the social age, makes the period much more complex. Everyone has their say, everyone interprets the data at will, everyone has different experiences. There are those who sing from the balcony and there are those who cry from home. It is just one example of the relativity of experience. Everyone experiences a stressful event in their own way. There are those who despair, who do not find solutions, who do not know what to do and there are those who do not worry about anything (simply because the situation is not clear to them). And it is precisely the stress due to this particular situation that I want to talk to you about.

If in this period you are feeling more pain than usual, you sleep badly, you are tired or you cannot concentrate, do not worry, it is completely normal, your body is doing nothing but reacting to what is happening around you. You will wonder why. The pathways of pain transmission are a bit complicated, but in a nutshell, the stress you are undergoing is altering the central processing and modulation (in your brain) of pain. Negative thoughts, fear, anxiety, do nothing but amplify the experience of pain. Your pain threshold has lowered because the psychological component has altered the balance of the system. What can we do to react to these stressful factors and return to an "acceptable" condition? All you have to do is implement coping strategies. No, not the one you applied to middle school with a classmate. Coping strategies are psychological mechanisms that are put in place by each of us to manage and deal with a stressful situation.

"I don't understand POPO, what did you say?" - Now let me explain.

In a nutshell, when we face a stressful situation, each of us reacts in its own way to be able to face or avoid it. There are those who run away from the problem, or those looking for a solution, or those looking for distractions. It all depends a lot on personality and character. This is not meant to be an excuse to play the Play Station and say "I am implementing my coping strategy".

Now we are all facing the problem of COVID-19 and I ask you a question: "Do you have the solution for this problem?" Do you think it is useful to open all the links where there is an article on how hot water defeats the virus? Or how the mask made with marzipan is better than the one made with puff pastry? Or how a friend's cougar discovered that the virus is actually a conspiracy between the American government and the Lilliputians? Therefore, I recommend the first coping strategy.

Find out, but from reliable sources. The Internet has given everyone the opportunity to express themselves, but this does not mean that everyone has the skills or competences to do it. You can be a good metalworker, or a good carpenter, but this does not make you an expert in virology. Therefore, avoid sites that search for clicks. All they do is fill your head with useless and harmful information. Follow the doctors, follow the ministerial channels, follow the health professionals (not all of them, even in this case there is a need to make a selection).

What other strategies can be implemented? Simple, take care of yourself. Listen to your body and try to understand its needs, if it wants to move, if it wants to rest or if it just wants to be distracted. The only things you can do are those you can act on. Needless to search Google for the new Noah's ark. At the moment it is not expected. I think. Focus your attention on what you can do, on what you can act. Exercise, read a book, play with the dog, cultivate that hobby you abandoned a few years ago, contact your friends, change that light bulb in the closet burnt out since '93. But above all, be positive.

That's right, all these things, done with passion, with desire, and with a psychological predisposition, will make us reduce the perception of pain. They asked us to stay home, we take the time to take care of ourselves. Meanwhile, medicine will run its course, but it needs time. We can only guarantee time if we stay at home. Dedicate this time to yourself that #everything will be fine".

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Serendipity (my article on BJSM)

The term serendipity indicates the good fortune of making happy discoveries by chance and, also, finding something that is not sought and unforeseen while you was looking for something else. The term was coined by Horace Walpole in the 18th century and therefore it falls within the category of "author's words".

Serendipity also indicates a typical element of scientific research, when important discoveries occur by chance, while one was searching for something else. In every discovery, as in real life, there is some element of randomness: if the researcher knew exactly what he is looking for, he would not need to look for it, because it would be enough for him to have a confirmation of a reality which he knew already exists.

My life has been progressing this way lately.

I'm not getting things in life, I'm doing something. Well, I'm doing a lot. But I'm making happy discoveries by pure chance. I am following the flow and beautiful things happen.

One of the paper boats I built in the last few months and trusted to the current is an article, which was published in the British Journal of Sports Medicine (BJSM), with the harmless title: Should you first care your ignorance, healthcare professionals? (you can read it by clicking here).

This article was born as a game, as a bet that I would have lost. But no. It has been published.

This article isfor all the people with persistent pain , beated by the genetics and ignorance of those who condemn them to existences that, today, are meaningless calvaries.

This article is for all health professionals looking to make a difference in their daily work, to change our lives, in a world of unprepared who are reputed themselves to be great clinicians and who are not: their ignorance tells us they are not.

This article is not just like any article published in any magazine. It is in the British Journal of Sports Medicine (BJSM): the magazine with the highest impact factor in the world in sports medicine.

This article is peer reviewed. Peer review is a critical part of the functioning of the scientific community, quality control and the self-corrective nature of Science.

All that is written in this article, the incapacity to treat chronic pain, which made me live a tremendous existence for twenty-five years, the discovery of the latest scientific evidence to manage persistent pain, the importance of movement, the uselessness of opiates and anti-inflammatories, the fundamental role of self-efficacy, the pain that is nowhere to be seen, the anger towards a class of health professionals that does not update knowledge, despite the fact that science is evolving ... is peer-reviewed.

So somehow,my story, stops being just a story and just mine. It becomes a weapon to silence fools. Not just for me, but for all patients like me, with an experience like mine. And for all health professionals who deeply believe in the revolutionary change that Science is laboriously bringing to the treatment of persistent pain.

 

This article is really for those who brought me here, building legs, nerves, knowledge, heart. The lists are useless. Those who are in my heart, they know.

 

At the links below you can find two Italian translations of the article.

http://bit.ly/327Z0Pm

http://bit.ly/2q3jhas

 

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Kinesiophobia state of mind

Kinesiophobia State of Mind.

Once yes. Phobia. Fear of movement. Chronic fear of movement. I've always had it. From what memory I have.

Kinesiophobia is defined as excessive, irrational, and debilitating fear of physical movement and activity resulting from a feeling of vulnerability due to a painful injury or repeated injury. Here. I have always had motor difficulties (the sisters in kindergarten did not help), which did nothing but get worse at school, where nobody cared about my fatigue, on the contrary: I found myself overwhelmed by a flow of kids, whose skills motor skills were certainly superior to mine and I was asked to adapt to their standard, without having the means, with catastrophic results. So for me, moving and hurting myself was the norm. I started having the fear of physical education classes, during which, in junior high, I remedied the whiplash injury that caused the lesion that causes the occipital neuralgia, I broke a couple of flexor tendons of the fingers and other various figures of 💩 that I'm not telling (not to mention the apocalyptic fall that paved the way for persistent pain, but that was accidental).

I believe there is little wonder that it has become kinesiophobic. Somehow, my body has always been a traitor. It was normal for me to choose the brain. It was certainly more reliable.

Obviously, over the years, my kinesiophobia has nurtured and made strong of "don't move", which the various health professionals have offered me. I was happy that I was told not to move. The fact is that kinesiophobia is related to chronic pain. Understanding this relationship can be difficult, but it is important in addressing the "dysfunctions" that can "cause the pain cycle". To sum up, the belief that something is wrong with our body, and the belief that avoiding exercise will prevent an increase in pain, lead to a vicious cycle involving avoidance of movement or any activity that could (could, in theory, in our opinion) cause pain or injury. Over time, the inactivity that results from this fear leads to psychophysical consequences such as muscle wasting, loss of mobility, and an altered response to painful stimuli and behavioral changes, which can contribute to perpetuating the pain. In short, a mess: we trap ourselves (unknowingly) even better in the problem.

Immersed in my kinesiophobia, when Luca showed up saying that I had to move to manage the pain, I thought he was crazy (sorry). Because it would have hurt, because I was not able. And it didn't happen that way. What happened was that in my journey I had people who welcomed me. They listened to my fears and, one kg after another, they helped me make it.

So, when I mirror myself, with a barbell on my shoulders, and I see all the intelligence of my body, which only needed its time, not to be overwhelmed by the flow of "others", I don't just feel free from pain, but also from fear and insecurity. And I firmly believe that the modicum of self-esteem that I managed to recover has passed and passes through the tool that I felt less congenial: my body.

My body, which I look more and more astonished.

 

Sources:
Butler DS, Moseley GL. Explain pain. Adelaide: Noigroup Publications; 2015
Crombez G, Vlaeyen JW, Heuts PH, Lysens R. Pain-related fear is more disabling than pain itself: evidence on the role of pain-related fear in chronic back pain disability. Pain 1999; 80 (1): 329 – 339. doi: 10.1016 / 0304-s3959 (98) 00229-2.
Lethem J, Slade P, Troup J, Bentley G. Outline of a fear-avoidance model of exaggerated pain perception — I. Behavior Research and Therapy 1983; 21 (4): 401 – 408. doi: 10.1016 / 0005-7967 (83) 90009-8.
Neblett R, Hartzell M, Mayer T, Bradford E, Gatchel R. Establishing clinically meaningful levels for the Tampa Scale for Kinesiophobia (TSK-13). Eur J Pain European Journal of Pain 2015; 20 (5): 1 – 10. doi: 10.1002 / ejp.795.

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In search of the lost symptom

"The drug removes the symptom, but it does not help to deal with what has led to being sick. Psychotherapy removes the symptom and allows us to face the difficulties that led to the development of the symptom ".

Mh.

Calm. Let's keep our heads. As a basic assumption, it can work.

Psychotherapy has led to a demand for renewal in relation to a tendentially mechanistic vision, in some way functionalistic, of the human being. However, we cannot consider psychotherapy a panacea for all ills or, at least, not in the case of persistent pain. If psychotherapy has changed the view of the human being, which therefore is not a machine, it seems to have jammed on one of its fundamental premises. Pain is considered as an expression of dissociation from emotional trauma: it seems to be an axiom. But is it really an axiom? Persistent pain challenges it, in a scientific way.

Although there are predictive psychosocial factors (emotional trauma, adverse socio-family conditions ...), these are not a sufficient condition for the development of persistent pain (not all those who have persistent pain, have experienced such conditions): pain necessarily has a demonstrable and verifiable biological basis (including nociplastic pain, for which structural and functional cortical changes are appreciable - the famous pain "which is nowhere to be seen").

If pain is a problem on an organic basis, it is not human to think of treating it with exhausting psychotherapy sessions in search of lost trauma, which may not exist (and often does not exist). Rather, it would be useful to renounce the premise pain = dissociation and stop considering people with persistent pain as sick people: they have a disease, they are not their disease, provided that persistent pain is a disease, rather than a (psycho) physical condition.

Scientifically, neurosciences question the premises of psychotherapy. A person with persistent pain is not a sick person, he is a person who lives a (psycho) physical condition, but he is not to be identified with his problem, with his difficulty, with his painful condition, he is a person who needs to be treated, but not in medical terms: he needs to be accepted, tout court. The aim of “cure medically intended” is to lead to the condition prior to that of the disease: it is often not possible. Psychotherapy, accepted all these assumptions, should be genuinely open to these new demands.

The Science of Pain, is a new science, which looks at an ancient problem with new eyes. It is not possible to think of finding innovative solutions while remaining anchored to old prejudices. Psychotherapy, which at the dawn of the twentieth century became the bearer of a revolution, has the possibility of renewing itself by playing a new and very important role, giving people with persistent pain different looks and alternative tools to deal with their own experiences in a constructive and effective way , detaching itself from the old vision of which we have spoken that, in this case, demonstrates its ineffectiveness.

In the case of persistent pain, intervention on the symptom is not useful, because we act with the idea that it is the manifestation of something, of the famous "repressed trauma", while pain is not the symptom, but the manifestation: if you enter into this perspective you can try to understand how it affects the life of those who live with it constantly and therefore it becomes possible to work at different levels on pain and its manifestations, undermining the idea that there is something to cure, to try rather to understand how it is possible to increase self-efficacy and live well with pain.

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(We chose to talk about psychotherapy, not psychology, because it intervenes directly on the epistemological constructs of the personality and on the functioning of the persons themselves).

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Article written with Andrea Ghirelli, trusted friend, educator, family mediator, systemic relational counselor.

 

Sources:

Chronic pain epidemiology - where do lifestyle factors fit in? by Oliver van Hecke, corresponding author Nicola Torrance, and Blair H Smith Br J Pain. 2013 Nov; 7 (4): 209 – 217. PMC4590163

A Broad Consideration of Risk Factors in Pediatric Chronic Pain: Where to Go from Here? by Hannah N. McKillop, and Gerard A. Banez2 Children (Basel). 2016 Dec; 3 (4): 38. Published online 2016 Nov 30. doi: 10.3390 / children3040038 PMC5184813

Preventing Chronic Pain following Acute Pain: Risk Factors, Preventive Strategies, and Their Efficiency by Kai McGreevy, MD, Michael M. Bottros, MD, and Srinivasa N. Raja, MD Eur J Pain Suppl. 2011 Nov 11; 5 (2): 365 – 372. PMC3217302

New concepts of pain, by Anne-Priscille Trouvina SergePerrota on Best Practice & Research Clinical Rheumatology

Bardolino Chiaretto Bentegodi, 2018

 

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Just a (wrong) word

I can seem a cold person, lonely, indifferent and devoid of feelings. Not so: I had to build an armor. Because surviving physical pain has been complicated. So complicated, that sometimes I don't know where I ended up.

It was even more complicated to survive the sense of inadequacy that caused me to fail to heal, despite all my efforts.

Up to about twenty-two, I don't think I was fully aware of the pain. There was, but it wasn't scary. It has started to be so since the summer of 2003, due to the combination of a number of factors, which I can now clearly identify (psychological, social, environmental, biological), but which at that moment completely eluded me.

In that summer, the pain, and a series of absurd symptoms, began to eat everything. I am no longer just talking about musculoskeletal pain and allodynia, but rigidity, sleep disturbances, stubborn headaches, tinnitus, irritable bowel, alterations in the perception of body temperature, tachycardia, allergic symptoms, dizziness, confused head. I felt like a crazy fly in an upside down glass. At that point I, already a loyal customer of countless physiotherapists, started my tours with doctors, who invariably resolved themselves in trips from shrinks or in bankruptcy treatment and consequent iatrogenic damage.

My pain and my "related" symptoms did not go away as planned, not as I expected, and not even as doctors, physiotherapists, osteopaths, chiropractors and shrinks were expecting.

So, at some point, I became the problem. The problem was not the pain, or my symptoms, or the tremendous situation I was in, or the treatments that didn't work. It was not those who treated me that he had insufficient knowledge about the mechanisms of persistent pain. No. I was the problem. And I was told in the face. As if I were hostile to healing.

As human beings, we generally like to think we are prepared and empathetic, but I wonder if we ever really think about the power of words. Because words build worlds. And the ones I heard from health professionals, have shaped my world and my personality.

Looking back, it's no wonder I was so ashamed of having persistent pain. No wonder I felt guilty. Because everything possible has really been done to make me feel inadequate, not so much unable to deal with the situation as directly responsible for its maintenance. I'm not saying it was done deliberately, with the intent to harm, but the result is this.

It makes no sense to deny the complexity of pain by offending the patient, yet it is what happened to me. We are people with persistent pain, not bad people, lying, fragile, incapable, uncooperative, irretrievable, condemned to pain "because of us"; we live in terrible situations, we are forced to adapt to a "standard" with which, frankly, no human being would like to confront: I know that I often say, that I am repetitive, it is just that I want to enter into your head well. Living with chronic pain is not normal.

Considering how important language is for those suffering from pain, any health professional should be prohibited from using inappropriate terms, those that end up making us feel weak, guilty (you'll end up in a wheelchair, just learn to live with it, it's the worst that I've ever seen, you only have Lourdes left) or ineffective (the pain doesn't go away because you don't want it to pass, you're like this because of yourself), crazy (you're doing it too big, you can't see anything from exams). The collection can easily be expanded. These words take us away from healing, first of all. Secondly, they are inhuman. And, in our heads of people with persistent pain, they consolidate a world of ineptitude and guilt.

A key task in pain psychology is to help people learn to reframe their inner monologue so that it becomes more realistic and supportive. Being able to catch and recognize unnecessary or unrealistic impulses is not easy, but this skill underlies many successful adaptations to persistent pain. This insight forms the basis of cognitive behavioral therapy (a form of psychotherapy that aims to change unnecessary thinking behaviors), which plays an important role in helping people live with persistent pain. Living with persistent pain, living well with pain, is a fully achievable goal, I know from personal experience. I would add that it is fully achievable in a context in which the patient is not regularly kicked by health professionals, which still often happens.

If the patient is to be guided towards a greater awareness, the same must happen for those who take care of him: health professionals should motivate people with persistent pain, offering a language that must be carefully chosen in order to take more care of the patient, not to rub against him.

When a treatment doesn't work, it's human to find someone to blame. I would avoid accusing the patient, I have already said that. I would also avoid blaming the clinician (although in this case, I admit, it takes me an effort of mercy, I'm biased). Moreover, by accusing each other, we do not have much to gain. Surely a motivated patient is one step closer to success, and a health professional aware of their limitations will know how to motivate a person, respect them, pass on the right information, when to stop and pass the baton, or choose to inquire.

I don't think health professionals are naturally evil. I believe that once we assume that the "old way of proceeding" we are used to is deleterious, just as we look for new ways for patients to help them reframe their thoughts in order to live well with pain, it must be given greater emphasis on the importance of “communicating pain well” by health professionals.

If patients wish to be helped, I assume that health care professionals want to help, so if we interpret the patient / health professional relationship as a dialectic and not as a match between opposing teams, we could achieve something good for both categories.

There is hope for everyone.

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