The meaning of coping with chronic pain – video presentation recording

Presented at the International Network for Research into Psychosocial Adjustment to Long-term Conditions (INRePALC)

1st International Online Networking Event
13th–17th September, 2021

Session Description: Let’s discuss what it means to cope with chronic pain – this is not a data presentation. Instead, I attempt to create a sense of enquiry and self-reflection on how to take the meaning of coping with chronic pain and apply it in the clinic. Thinking about what we do, and what the doing represents in the clinic, can be rewarding.

The meaning of coping with chronic pain

Presented at the International Network for Research into Psychosocial Adjustment to Long-term Conditions (INRePALC)

1st International Online Networking Event
13th–17th September, 2021

Session Description: Let’s discuss what it means to cope with chronic pain – this is not a data presentation. Instead, I attempt to create a sense of enquiry and self-reflection on how to take the meaning of coping with chronic pain and apply it in the clinic. Thinking about what we do, and what the doing represents in the clinic, can be rewarding.

View here.

It’s just one of them things you’ve got to try and manage – meanings of pain for people with brain injury

Lis Dreijer Hammond, Simon van Rysewyk, Chalotte Glintborg, Stephanie Kılınç, Giles Hudson

Abstract

Long-term pain is a common comorbidity for people with acquired brain injury. This chapter explores what it is like to live with those two conditions, focusing on the meaning for the individual. The meaning of pain plays a part in determining people’s emotional reactions and behavioural choices, and it is central for the process of psychosocial adjustment to a life with functional, social, participatory, and emotional challenges. Meaning is also closely linked to the identity changes that typically happen once people are faced with the challenge of living with long-term conditions. The field of positive psychology has contributed valuable insights into this process and the roles of benefit-finding, resilience, and post-traumatic growth are discussed. Two significantly different case stories are used as an illustration of life with acquired brain injury and long-term pain. One case, Julie, illustrates the process of adaptation and the other case, Mark, illustrates the challenge of dealing with pain issues when insight and pain perception has been changed by a frontal lobe injury. In both cases, the meaning of pain is integral to the meaning of brain injury. Neither Julie nor Mark consider themselves to have long-term pain, they live with the long-term impact of their brain injury, where pain is just one aspect. In fact, Mark’s altered pain perception causes him to claim that he feels no pain, yet it is nevertheless a challenge for him. The chapter concludes with clinical recommendations, calling for access to systematic, psychosocial rehabilitation that includes meaning-based approaches. A holistic rehabilitation model is proposed, suggesting that traditional medical and rehabilitation approaches need to happen within the context of psychosocial adjustment and rehabilitation, rather than expecting psychosocial adjustment to happen by itself, as a “by-product” of medical, physical, cognitive, and occupational interventions.

Keywords: chronic, long-term pain, acquired brain injury, meaning, purpose, and identity, psychosocial adjustment and rehabilitation, positive psychology, resilience and benefit-finding, post-traumatic growth

Read the article here.

Meanings of cancer-related pain – Australian Pain Society Annual Scientific Meeting, April 2021, Topical Session

Presented and recorded at the Australian Pain Society Annual Scientific Meeting, April 2021 virtual event

Topical Session
3C: Meanings of Cancer-Related Pain
Tuesday, April 20, 2021
11:15 AM – 12:30 PM

Session Description: Cognitive factors are important determinants of cancer-related pain experience. Simon van Rysewyk describes how cancer-related is particularly sensitive to cognitive factors and describes some common cognitions that people with cancer-related pain have and how they influence patient outcomes. Xiangfeng Xu (Renee) presents on the cultural and social factors that influence cancer pain management of Chinese migrants and what culturally congruent strategies may be implemented to improve their pain outcomes. Melanie Lovell compares levels of suffering in people with cancer-related pain versus non-cancer chronic pain, highlighting differential meanings of existential or spiritual distress and mood dysfunction. Lovell outlines management approaches to cancer pain and suffering that are not responsive to analgesia, such as meaning- or peace-centred therapies.

Session Objectives:
At the end of the session, attendees will know:
– Common meanings of cancer-related pain and what meanings influence specific patient outcomes
– Common meanings of suffering in cancer-related pain and the relationship between these meanings and non-cancer chronic pain experience and mood dysfunction
– Effective approaches to diagnosis and management of cancer-related pain symptoms, including interventions based on meaning
– Impact of culture on Chinese migrants’ perspectives and responses to cancer pain and recommendations for clinical practice

Presenter Duties
Chair: Dr Simon van Rysewyk, University of Tasmania
Organiser/Presenter 1: Dr Simon van Rysewyk, University of Tasmania
Presenter 2: Dr Renee Xu, University of Sydney
Presenter 3: Associate Professor Melanie Lovell, University of Sydney

Meanings of cancer-related pain – Australian Pain Society Annual Scientific Meeting, April 2021

Australian Pain Society Annual Scientific Meeting, April 2021
virtual event

Topical Session
3C: Meanings of Cancer-Related Pain
Tuesday, April 20, 2021
11:15 AM – 12:30 PM

Session Description: Cognitive factors are important determinants of cancer-related pain experience. Simon van Rysewyk describes how cancer-related is particularly sensitive to cognitive factors and describes some common cognitions that people with cancer-related pain have and how they influence patient outcomes. Xiangfeng Xu (Renee) presents on the cultural and social factors that influence cancer pain management of Chinese migrants and what culturally congruent strategies may be implemented to improve their pain outcomes. Melanie Lovell compares levels of suffering in people with cancer-related pain versus non-cancer chronic pain, highlighting differential meanings of existential or spiritual distress and mood dysfunction. Lovell outlines management approaches to cancer pain and suffering that are not responsive to analgesia, such as meaning- or peace-centred therapies.

Session Objectives:
At the end of the session, attendees will know:
– Common meanings of cancer-related pain and what meanings influence specific patient outcomes
– Common meanings of suffering in cancer-related pain and the relationship between these meanings and non-cancer chronic pain experience and mood dysfunction
– Effective approaches to diagnosis and management of cancer-related pain symptoms, including interventions based on meaning
– Impact of culture on Chinese migrants’ perspectives and responses to cancer pain and recommendations for clinical practice

Presenter Duties
Chair: Dr Simon van Rysewyk, University of Tasmania
Organiser/Presenter 1: Dr Simon van Rysewyk, University of Tasmania
Presenter 2: Dr Renee Xu, University of Sydney
Presenter 3: Associate Professor Melanie Lovell, University of Sydney

Including People with Lived Experience of Pain in the Research Process: Do It Early and Often

Kayt Sukel / RELIEF (December 13, 2020)

“More and more, we see the value of taking a more patient-centered approach, at every step of the research process,” said Captain Robyn Bent, director of the ongoing Patient-Focused Drug Development (PFDD) initiative, which was established at the US Food and Drug Administration (FDA) in 2012. “In the early stages, that patient input can help researchers understand the impact of the disease and existing treatments, helping us better understand what we need to measure to see if something has worked or not. Once we get to clinical trials, patients can help us understand what aspects of those trials need to be better tailored to fit the needs of the people who will end up participating in those trials. And once a treatment is available, patients can help us understand how to best communicate information to both patients and doctors to facilitate shared decision-making.”

Kayt Sukel. Including People with Lived Experience of Pain in the Research Process: Do It Early and Often.

Read the article in RELIEF here.

Neural Plasticity and the Malleability of Pain

Grant Gillett

Collage by Alexey Kondakov

Abstract
Pain is a product of our neural networks painstakingly formed through phylogeny and ontogeny. Neural pathways form within neural nets as a result of long term potentiation and other dynamic mechanisms that subserve learning and memory and are modified so therefore form a key part of what Foucault calls “a volume in perpetual disintegration,” constantly reinforcing connections that capture points of experiential association and gradually dismantling networks that are no longer relevant to the organism’s affordances (points of biological significance in a stimulus environment).

Human pain, seen as an experience with a pivotal role in human interactions, and with a number of psychologically inflected varieties and meanings, is therefore not only a neural phenomenon, but also a moral one. It is moral in that it reflects influences from our engagement in a context of human adaptation that is discursive and interpersonal, one that is heavily inscribed by cultural stereotypes and practices that shape who we are and how we understand and give an account of ourselves. To be, in that sense, is to be humanly engaged in the world, including the world of the clinic and its mores whenever and wherever we enter into it.

Unlike experiences mediated by brain pathways designed to transmit and analyse information that tracks and details affairs in the world around us, pain impulses “diffuse” themselves in order to excite reactions and responses such that the primary destination is not the perceptual and analytic areas of the cortex, but areas which convey the impact of the world upon the subjective body and set in motion the body’s highly mediated reaction to contingencies (the touch of the real).

A major feature of complex and mediated cognitive and conative reactions is that, whereas animal drives reflect a simple psychic economy adapted to the natural world, human drives reflect a transformation into terms adapted to a life-world where we tell ourselves and others what is happening and negotiate what should be done to meet the challenges we face.

Gillett G. Neural Plasticity and the Malleability of Pain. In: Meanings of Pain. 2016. (pp. 37-53). Springer, Cham.

Request a pdf copy here.
Published in Meanings of Pain, Volume I. Purchase here.

Mental Imagery in Chronic Pain: An Access to Meaning Beyond Words

Chantal Berna

Collage by Alexey Kondakov

Abstract
Mental images are cognitions, which take the form of sensory experiences in the absence of a direct percept. Images can be opposed to verbal thoughts, i.e. cognitions in the form of words. From the perspective of clinical cognition, verbal thoughts and mental images are different phenomena, with mental images having tighter connections to emotion than verbal thoughts. Recently, cognitive psychology research has focused on spontaneous mental imagery, i.e. involuntary intrusions of often vivid mental images that appear in one’s mind. Spontaneous mental imagery is now viewed as an important part of psychopathological processes across psychological disorders, a potential emotional amplifier and a therapeutic target in its own right.

Pain is a personal experience, so exploring and understanding the patient’s thoughts about pain might contribute to therapeutic success and favour personalized care. In the field, thoughts about pain have been mostly studied as verbal thoughts. Yet, a growing literature is investigating thoughts about pain in the form of imagery.

Clinical Implications
Studying chronic pain patients’ mental imagery provides unique insight into their personal experience, integrating information about somatosensory perceptions, emotional experience and meanings of pain. The study of imagery in pain also gives insight into possible reinforcing mechanisms of pain, and a basis for a powerful, individualized therapeutic approach through different mental imagery therapy techniques.

This chapter describes current knowledge about mental imagery as intrusive cognitions in the context of pain, considers the neuroscientific investigations that have been undertaken, and discusses the therapeutic potential it yields.

Request a pdf copy here.
Published in Meanings of Pain, Volume I. Purchase here.

Further Reading
Berna C, Tracey I, Holmes EA. How a better understanding of spontaneous mental imagery linked to pain could enhance imagery-based therapy in chronic pain. Journal of experimental psychopathology. 2012 Apr;3(2):258-73.

Exploring the Meanings of Pain: My Pain Story

Joletta Belton

Sculptures by Fabio Viale

Abstract
First-person narratives of the lived experience of pain, and the meanings of that experience, are uncommon, especially from persons who are not also clinicians or researchers. Yet such narratives could be particularly useful in understanding pain. First-person accounts, stories of pain, can lend unique insights into the lived experience of pain, how individuals make meaning of it, how they come to those meanings, and how those meanings can change over time. Such narratives could lead to new areas of inquiry and explorations of new possible treatment paths.

This chapter provides such a narrative, offering a glimpse into one person’s lived experience of pain and its meanings. It demonstrates how our individual narratives, our stories, help us make sense of our experiences, including pain. It demonstrates how our narratives can change over time as new information and understandings lead to new meanings, and how such changing narratives and meanings can be a part of a therapeutic process that can lead to better outcomes for patients and clinicians alike.

Clinical Implications
This chapter provides a first-person account of the lived experience of pain and recovery. It explores the meanings of pain, how they came to be, and how those meanings change over the course of time, from early onset of pain through worsening, unexplained pain to recovery from pain.

Keywords Lived experience · Pain · Chronic pain · Narrative · First-person
phenomenology · Meanings of pain · Patient experience · Recovery · Healing

Download a pdf copy here.

Published in Meanings of Pain, Volume II. Purchase here.

‘Meanings of Cancer-Related Pain’

Sculpture by Fabio Viale

Australian Pain Society Annual Scientific Meeting, April 2021
virtual event

Topical Session
3C: Meanings of Cancer-Related Pain
Tuesday, April 20, 2021
11:15 AM – 12:30 PM

Session Description: Cognitive factors are important determinants of cancer-related pain experience. Simon van Rysewyk describes how cancer-related is particularly sensitive to cognitive factors and describes some common cognitions that people with cancer-related pain have and how they influence patient outcomes. Xiangfeng Xu (Renee) presents on the cultural and social factors that influence cancer pain management of Chinese migrants and what culturally congruent strategies may be implemented to improve their pain outcomes. Melanie Lovell compares levels of suffering in people with cancer-related pain versus non-cancer chronic pain, highlighting differential meanings of existential or spiritual distress and mood dysfunction. Lovell outlines management approaches to cancer pain and suffering that are not responsive to analgesia, such as meaning- or peace-centred therapies.

Session Objectives:
At the end of the session, attendees will know:
– Common meanings of cancer-related pain and what meanings influence specific patient outcomes
– Common meanings of suffering in cancer-related pain and the relationship between these meanings and non-cancer chronic pain experience and mood dysfunction
– Effective approaches to diagnosis and management of cancer-related pain symptoms, including interventions based on meaning
– Impact of culture on Chinese migrants’ perspectives and responses to cancer pain and recommendations for clinical practice

Presenter Duties
Chair: Professor Jane Phillips, University of Technology, Sydney
Organiser/Presenter 1: Dr Simon van Rysewyk, University of Tasmania
Presenter 2: Dr Renee Xu, University of Sydney
Presenter 3: Dr Melanie Lovell, University of Sydney

“Me seeing you seeing my pain”

Meanings of Pain (Springer International Publishing, 2016) was created to advance understanding of pain experience as a bearer of meaning. Progress in modern biomedicine is necessary to explain pain and to aid in its treatment; yet, preference for biomedical explanation of pain in the field has meant that research and clinical attention to the experience of pain and to common factors of pain, such as meaning, as both a clinical topic and a research method, mostly remains a blind spot in knowledge.

Meaningful changes that we notice in others are often subtle and small changes in facial expression, and are similar to features of clinicians that patients find meaningful, such as aspects of clinician demeanour (enthusiasm, positive personality, attentiveness), which are often embodied in subtle facial expressions, gestures, or particular tones of voice (e.g., Gracely et al. 1985). Pain is a personal experience, not an action; yet it displays itself in those actions in which a human person in pain is revealed to observation (Craig et al. 2010). Body-parts are subject to involuntary changes during pain, such as reflexive withdrawal, but in the social transaction of pain, the involuntary changes revealed in the face are more meaningful than in other body-parts (Prkachin et al. 1983; Craig, 2009). This is because body-parts do not have the individuating meaning of the face: the meaning of revealing me, here, now. The expression on a human person’s face is largely determined by involuntary facial actions; yet, it is the living picture of the person that “peers” from it, and hence a concentrated symbol of the “self”. In facial expressions of pain, the face is not a mere bodily part, but the whole person: the self is spread across its surface, and there displayed.

Intentional control of pain through facial actions is normally judged by observers to be an insincere expression of pain, and open to doubt (Hill & Craig, 2002). The controlled pain face is perceived as a mask, which conceals the person lying “behind” it. The expressions on the human face are not always transparent effects of the personal experiences that elicit them, as perhaps they are in nonhuman mammals. Human beings can deceive through their faces, and children and adults can use the face to fake, as well as exaggerate, or suppress, pain (Williams, 2002). It is possible that deception is possible because we do not distinguish a human person from his or her face. Protective acts such as withdrawal reflexes, guarded postures, and disabled behaviour, can communicate pain to sensitive observers (Sullivan, 2008). But when I observe another’s pain face, I am not meeting a physical part of him, as I am when I notice his injured arm or leg. I am meeting him, a real person, who reveals himself in the face as one like me. There are deceiving faces, but not deceiving arms or legs.

Facial expressions of pain call on you to respond to me. As soon as I notice pain in another person, my responsibilities are engaged. I am held to account for it. The face has this meaning for us because it is the boundary at which the other in pain appears, offering “this person” as one in need of help. This feature is perhaps at the heart of what it means to treat pain. Care of persons in pain would be impossible without the assumption that we can commit ourselves through promises, take responsibility now for some event in the future or the past, and enter into obligations that we hold as not transferable to other persons—all of which are perceived in the face.

We may separate pain from its social meaning, and assign to it an impersonal, “bodily” meaning. However, an observation of pain which, whether or not intentionally, focuses exclusively upon the body-parts of another, but which neglects the preliminary changes in the face, as well as in the voice, hands and posture, perhaps is unethical. The failure to recognise the personal existence of the other in pain is therefore an affront, both to him and to oneself. In separating pain from its social meaning, we remove it from the interpersonal world of social relations, which compels us to recognise human beings as persons and sometimes to compromise or risk ourselves for them.

The most meaningful feature in displays of pain is the eyes, followed by brows, eyelids, mouth, head, forehead, and then other body-parts (Prkachin et al. 1983). Although glances are normally voluntary, they participate in the pattern of involuntary social communication where one person in painful distress is “revealed” in his body to the one who observes him. To turn my eyes to you is a voluntary act; but what I receive from you is not anything I voluntarily do. The eye enables the human person in pain to be displayed to another in his body, and in the act of display to call on the observer to intervene on their behalf. The complex transaction of pain involves the voluntary and the involuntary to co-mingle on the surface of the human body. The joining of minds that begins when an expression of pain is answered with a reciprocated response is partly fulfilled in “me seeing you seeing my pain”, which is not the reciprocity of normal cooperation, but of meaning. I believe many patients with pain desire to experience first-hand this more concentrated form of social recognition.

References

Craig KD. A social communications model of pain. Canadian Psychology/Psychologie Canadienne 2009; 50:22-32.

Craig KD et al. Perceiving pain in others: automatic and controlled mechanisms. J Pain 2010; 11(2):101-8.

Gracely RH et al. Clinicians’ Expectations Influence Placebo Analgesia. Lancet 1985; 1(8419):43.

Hill ML, Craig KD. Detecting deception in pain expressions: The structure of genuine and deceptive facial displays. Pain 2002; 98:135-144.

Prkachin KM et al. Judging nonverbal expressions of pain. Canadian Journal of Behavioural Science/Revue canadienne des sciences du comportement. 1983; 15(4):409.

Sullivan MJL. Toward a biopsychomotor conceptualization of pain. Clin J Pain 2008; 24:281-290.

van Rysewyk S (ed). Meanings of Pain. Springer International Publishing: Switzerland, 2016.

Williams AC. Facial expression of pain: An evolutionary account. Behav Brain Scien 2002; 25:439-488.

Call for Abstracts: Meanings of Pain, Volume III

Sculpture by Fabio Viale

Volume III Topic: Meanings of pain in vulnerable or special patient groups

Series Editor: Dr Simon van Rysewyk
Publisher: Springer

The Meanings of Pain book series describes how the meaning of pain changes pain experience – and people – over time.

Pain in the moment is experienced as immediately distressing or unpleasant. If pain persists over time, more complex meanings about the long-term consequences, or burden of pain, can develop. These meanings can include existential meanings such as despair or loneliness that focus on the person with pain, rather than pain itself.

Meanings of Pain offers a vocabulary of language about pain and meaning. An objective of the series is to stimulate self-reflection on how to use information about meaning in clinical and non-clinical pain settings. The book series is intended for people with pain, family members or caregivers of people with pain, clinicians, researchers, advocates, and policy makers.

Although chronic pain can affect anyone, there are some groups of people for whom particular clinical support and understanding is urgently needed. This applies to “vulnerable” or “special” groups of people and to the question of what pain means to them.

Volume III focuses on describing the meanings of pain in groups of “vulnerable” or “special” people, such as:

  • Infants or children
  • Women
  • Older adults
  • People with a physical or intellectual disability
  • People with a brain injury
  • People diagnosed with a disease
  • Veterans
  • Athletes
  • Workers
  • Addicts
  • People with mental illness or mental disorders
  • Homeless people
  • People in rural or remote communities
  • People in multicultural communities
  • Indigenous peoples

Invited chapter types
The editor Dr Simon van Rysewyk invites contributions for Volume III on the meanings of pain in vulnerable or special patient groups. The following manuscript types will be considered:

  • Original Research (e.g., original clinical, translational, or theoretical research)
  • Reviews (e.g., Systematic Reviews, Meta-analytic reviews, Cochrane type reviews, Pragmatic Reviews)

Authors interested in submitting a chapter for publication in Volume III are invited to submit a 350-word Abstract, which includes the name and contact information of the corresponding author, to:

Dr Simon van Rysewyk
simon.vanrysewyk@utas.edu.au

Abstract Deadline: closed

“It is my opinion that this … work will stand as the definitive reference work in this field. I believe it will enrich the professional and personal lives of health care providers, researchers and people who have persistent pain and their family members. The combination of framework chapters with chapters devoted to analysing the lived experience of pain conditions gives the requisite breadth and depth to the subject.” – Dr Marc A. Russo, MBBS DA(UK) FANZCA FFPMANZCA, Newcastle, Australia, from the Foreword in Volume II

“Meanings of Cancer-Related Pain”

Sculpture by Fabio Viale

Australian Pain Society Annual Scientific Meeting 2020
Hobart Tasmania

Topical Session
Tuesday, April 7, 2020, 3.30-5.00pm

Session Description: Cognitive factors are important determinants of cancer-related pain experience. Simon van Rysewyk describes some common meanings and beliefs that people have about cancer, illness, and pain, and the consequences these meanings have in relation to common help-seeking behaviours or coping strategies people choose to adopt. Suffering is a cognitive and emotional response to recurrent perceived losses experienced in some people with cancer. Megan Best presents on the challenges in assessing people with cancer-related suffering and the relationship of suffering to cancer-related pain. Melanie Lovell compares levels of suffering in people with cancer-related pain versus non-cancer chronic pain, highlighting differential meanings of existential or spiritual distress and mood dysfunction. Best and Lovell outline management approaches to cancer pain and suffering that are not responsive to analgesia, such as meaning- or peace-centred therapies.

Session Objectives
At the end of the session, attendees will know:
– Common meanings of cancer-related pain and how people apply these meanings to cope with their pain
– Common meanings of suffering in cancer-related pain and the relationship between these meanings and non-cancer chronic pain experience and mood dysfunction
– Effective approaches to diagnosis and management of cancer-related pain symptoms, including interventions based on meaning

Presenter Duties
Chair: Professor Jane Phillips, University of Technology, Sydney
Organiser/Presenter 1: Dr Simon van Rysewyk, University of Tasmania
Presenter 2: Dr Megan Best, University of Sydney
Presenter 3: Associate Professor Melanie Lovell, University of Sydney

Humans beings are persons and organisms

Sculpture by Fabio Viale

As organisms, human beings interact with the world and each other through causal mechanisms that control us and every other physical thing. As persons, we act in the world through our thoughts, emotions, attitudes, or desires.

Accordingly, human beings are describable in two distinct, but complementary ways: in terms of the way the world is, through scientific descriptions of the causal mechanisms and laws that explain physical things, or, in terms of the way the world seems, through descriptions of personal experiences and meanings.

One or the other way of describing human beings comes into focus depending on the questions we ask about ourselves or the world. The features of personal experience—thought, feeling, speech and action—are amenable to standard scientific explanation as specific changes in the body. Traditionally, scientific research has had much to say about the physical nature of pain, but much less about the personal experience or meaning of pain. Indeed, the meaning of pain remains a blind spot in knowledge.


A description of a human being as a person means that there is a way of understanding of human beings in which personal experience and meaning, rather than physical causation alone, is needed to answer the question, “What is happening?”

Human persons can distinguish between how things are in the world and how things seem to me. I can recognise within myself a perspective or point of view on the world and identify it as belonging to me. Every person has such a unique perspective; this is partly what it means to be a person rather than a physical thing. In contrast, a scientific description of the world does not presuppose any personal point of view. Physical science does not use words like “I”, “here,” or “now”. Does this mean that “persons” are unobservable to standard quantitative science?

Possibly. Imagine a complete explanation of pain according to the final neurophysiology of pain—whatever it turns out to be. Such an explanation of pain would, to put it very crudely, accurately map specific neurophysiological changes in physical parts in the living human organism and all their true causal interactions across time. However invaluable such an explanation would be to pain medicine, it could not describe the way pain seems to the person who experiences it, for which of the physical objects described in this explanation is me with pain, here, now? Immediate pain always seems a certain way to persons, and this “seeming” determines the experience of the person with pain. In describing personal pain, human beings use language with other meanings than the language used in neurophysiology. The final neurophysiological explanation of pain therefore could explain only one dimension of pain in human beings—the physical dimension—in language that could not capture the personal experience, burden, or meaning of pain.


A philosophical assumption of neurophysiology is that a person is identical with his or her body. Person and body are one and the same thing. In terms of personal experience, however, the identity between person and body escapes personal understanding. For example, when I feel a pain, there is no information or evidence, or nothing that I could discover about my body subsequent to the experience of pain, that could demonstrate it to be false. When I feel a pain, I simply know that I am in pain.

In person to person interactions, we commonly respond to each other as though we are not identical with the human body, but in a compelling sense operating “through” the body, which seems to be a vehicle of thought, emotion, pain or suffering. We feel that each person we encounter in the world is a unique perspective that is not the body, but the “self”, which peers out through the face. The human face is the social instrument of persons. In seeking to understand you, or adjust how the world or your experience seems to you, I interact with you through your embodied perspective.

In pain experience, it is my loss of personal control over my body, and its dominion over me, that create the compelling sense, for me and for others, of an “incarnate” person. Pain imposes a significant vulnerability on persons: the vulnerability of a free person who is overwhelmed in his or her body by the presence of pain. This can make the person, and the person’s significant others, feel answerable for what he or she experiences.


“Pain Takes Over Everything”: The Experience of Pain and Strategies for Management

Marie Crowe, Deb Gillon, Cate McCall, and Jennifer Jordan

Abstract This chapter explores the personal experience of pain from its biological underpinnings to strategies people identified for managing this experience. The somatic experience of chronic pain describes the biological processes involved in pain and how this can become a chronic experience with psychological and social implications. The personal experience of pain is explored through a systematic review of research of qualitative experiences. We found that the experience of pain was similar despite its etiological underpinnings—whatever the biological cause there were similarities in the personal experience. Participants in the studies identified five themes that described these personal experiences: (1) body as obstacle; (2) disrupted sense of self; (3) invisible but real; (4) unpredictability; and (5) keeping going.

This section of the chapter is followed by the findings of a systematic review of how older people learn to manage their pain experiences:

– “adjusting to the inevitable”
– “doing it my way without medication”
– “the importance of support in managing the struggle”

The chapter concludes by discussing some of the strategies that can be used to manage the self in pain: support for self-management, medication, exercise and psychological interventions (mindfulness and cognitive behavioural therapy).

Clinical Implications: Many people manage their chronic pain by actively balancing the competing forces of hope and despair. There are similarities in this experience of chronic pain across a range of conditions which has implications for the development of pain management strategies and interventions that address the pain experience and not just the biological condition. Learning to manage the self in pain involves acceptance of pain as on-going and a part of who they are; keeping connected with others; keeping occupied through meaningful activities; getting meaningful support; and developing new meaning in life. Clinical interventions need to a focus on the person’s sense of self, strategies for maintaining hope, strategies that provide relief for the distress associated with pain; and providing people with a sense of control over their experiences both with the pain itself and in their encounters with the medical profession and the use of medication.

Meanings of Pain, Volume II, on Springer.

External Links
Painaustralia
Pain Health
Chronic Pain Australia

Pain Fact Sheets
The Nature and Science of Pain (Painaustralia)
Prevalence and the Human and Social Cost of Pain (Painaustralia)
Clinical Assessment of Pain (Painaustralia)
Multidisciplinary Pain Management  (Painaustralia)
Chronic Pain – A Major Issue in Rural Australia (National Rural Health Alliance)
Chronic Physical Illness, Anxiety and Depression (Beyond Blue)
Neuropathic (Nerve) Pain (Painaustralia)
Self-Managing Chronic Pain (Painaustralia)
The Pain Toolkit Australia (www.paintoolkit.org)
Chronic Pain Management Strategies (NSW ACI)
Communicating and building a pain treatment team (NSW ACI)
Pain and Physical Activity (NSW ACI)

Call for Papers: Pain Medicine Special Issue, “Meaning in the Context of Pain”

Sculpture by Fabio Viale

Dear reader,

Pain Medicine is planning an interdisciplinary Special Issue, “Meaning in the Context of Pain.” I am the lead guest editor; Dr John Quintner and Prof Milton Cohen are guest editors.

Meaning is an essential dimension of the experience of pain. Empirical evidence from qualitative and mixed method studies suggests that pain is not only associated with a common meaning of “threat” or “danger,” but also is experienced as immediately distressing or unpleasant. If this combined meaning persists over time, people’s concerns may shift from the experience of pain onto themselves as persons. As a result of this shift, powerful existential meanings such as hopelessness or loneliness may develop. Such experiential meanings interact with desires to reduce or eliminate pain, and with expectations about the perceived efficacy of a particular treatment for pain. These meanings may in turn result in a spectrum of negative moods, such as depression or despair, and negative beliefs such as fatalism. Such negative components of the emotional dimension are often at the core of the lived experience of pain.

Despite this evidence, the preference for and consequent overwhelming dominance of biomedical explanations in pain clinical practice and research has meant that this other dimension of the experience of pain has been overlooked.

Special Issue Themes and Sub-Themes

Themes of the “Meaning in the Context of Pain” Special Issue include, but are not restricted to, the following:

  • Common experiential meanings of pain in different contexts
    • Chronic non-cancer pain or cancer-related pain
    • Pain in special or vulnerable groups
    • Pain and mental illness
    • Pain and substance abuse
    • Pain and fatigue
  • How meaning modifies the experience of pain
    • Pain and personal identity over time, including stigmatisation
    • Family meanings and the experience of pain (e.g., “psychosomatic families”)
    • Perceived meaningfulness of life, including suicidality
    • How symbolic manipulation of meaning (e.g., verbal instruction) can change pain experience
    • Perceived meaning of different types of medical treatment
    • “Catastrophising” and “fear-avoidance” as expressions of meaning
    • The limits of meaning: when no meaning can be given to an experience of pain (e.g., “medically unexplained pain”)
    • Coming to terms with “pain acceptance”
  • Therapeutic implications of meaning
    • Similarities and differences in meanings of pain between the person in pain versus observers
    • The influence of meaning on pain scale ratings
    • Implications of meaning-making for self-control or self-management of pain
    • How patients’ meanings of pain can inform treatment planning
    • Strategies patients use to find meaning in their pain
    • Work rehabilitation and returning to work

  • Experiential research methods to study meanings of pain
    • Ethnography, narrative, phenomenology, grounded theory, and single-case study methods
    • Other research methods: Neurophenomenology, The Descriptive Experience Sampling Method, The Experiential-Phenomenological Method, The Elicitation Interview Method, quantitative designs, quantitative-qualitative designs

The meaning of “meaning” and clinical applications or implications of meaning in the context of pain must be addressed in detail in all contributions.

Keywords: pain, meaning, patient experience, pain management

Invited article types

Within the scope of the themes and sub-themes described above, the guest editors invite contributions considered in the form of the following manuscript types, in order of importance:

  • Reviews (e.g., Systematic Reviews, Meta-analytic reviews, Cochrane type reviews, Pragmatic Reviews)
  • Original Research (e.g., original clinical, translational, theoretical or philosophical research)

See Instructions to Authors in Pain Medicine.

If you wish to submit an article for consideration in this Special Issue, please let me know at: simon.vanrysewyk@utas.edu.au. Then, email me a 400-word description/summary/abstract by November 1, 2019.

Thank you for your time.

Does “pain” need redefining?

By Simon van Rysewyk,1 John Quintner,2 Milton Cohen3
1School of Humanities, University of Tasmania, Australia; 2Arthritis & Osteoporosis Western Australia; 3St Vincent’s Clinic and Clinical School, University of New South Wales, Australia

Presented at the 2019 Patient Experience Symposium, April 29-30, 2019, Sydney, Australia.

Introduction: The widely accepted definition of pain promulgated by the International Association for the Study of Pain (IASP), although useful in a clinical context, is written mainly from the perspective of the “observer”.  As such it fails sufficiently to capture the perspective of the “experiencer” of pain.
Methods: This presentation briefly analyses the historical development of the IASP definition, and some of the commentaries and suggested modifications to it over almost 40 years. Common factors of pain that patients experience are described, together with theoretical insights from philosophy and biology.
Results: Major problems with the IASP definition of pain include: (i) the stance of the observer is privileged over that of the experiencer of pain; (ii) the obligatory linking with “tissue damage” focuses attention on the body as distinct from the person; and (iii) the validity of the experience when there is no obvious “cause” is questioned. A revised definition of pain is offered: Pain is a mutually recognisable somatic experience that reflects a person’s apprehension of threat to their bodily or existential integrity.
Conclusion: This definition integrates the subjectivity or “first-person” level of experience of pain, and the challenge for the “second-person” of clinical evaluation (if not also intervention) towards objective “third-person” goals. This redefinition of pain is compatible with that of the IASP but more philosophically sound, biologically relevant, clinically applicable, and meaningful for people experiencing pain and for health care professionals who engage with them.

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Meanings of Pain, Volume II: Common Forms of Pain and Language (2019, Springer)

Featured

Meanings of Pain_Volume II_Cover

  • Provides a study of pain in which meaning is essential to the way pain is felt
  • Describes meanings of pain in patients with common forms of chronic pain
  • Discusses the importance of meaning in pain assessment, diagnosis, clinical language and medical stigmatisation

Experiential evidence shows that pain is associated with common meanings. These include a meaning of threat or danger, which is experienced as immediately distressing or unpleasant; cognitive meanings, which are focused on the long-term consequences of having chronic pain; and existential meanings such as hopelessness, which are more about the person with chronic pain than the pain itself.

This interdisciplinary book – the second in the three-volume Meanings of Pain series edited by Dr Simon van Rysewyk – aims to better understand pain by describing experiences of pain and the meanings these experiences hold for the people living through them. The lived experiences of pain described here involve various types of chronic pain, including spinal pain, labour pain, rheumatic pain, diabetic peripheral neuropathic pain, fibromyalgia, complex regional pain syndrome, endometriosis-associated pain, and cancer-related pain. Two chapters provide narrative descriptions of pain, recounted and interpreted by people with pain.

Language is important to understanding the meaning of pain since it is the primary tool human beings use to manipulate meaning. As discussed in the book, linguistic meaning may hold clues to understanding some pain-related experiences, including the stigmatisation of people with pain, the dynamics of patient-clinician communication, and other issues, such as relationships between pain, public policy and the law, and attempts to develop a taxonomy of pain that is meaningful for patients. Clinical implications are described in each chapter.

This book is intended for people with pain, their family members or caregivers, clinicians, researchers, advocates, and policy makers.

“It is my opinion that this … work will stand as the definitive reference work in this field. I believe it will enrich the professional and personal lives of health care providers, researchers and people who have persistent pain and their family members. The combination of framework chapters with chapters devoted to analysing the lived experience of pain conditions gives the requisite breadth and depth to the subject.” – Dr Marc A. Russo, MBBS DA(UK) FANZCA FFPMANZCA, Newcastle, Australia, from the Foreword

Review the Table of Contents and buy now on Springer.

Meanings of Pain, Volume II, follows on from Meanings of Pain, Volume I, published in 2016 by Springer.

Reasons for Investigator-Participation and Introspection in Pain Research

Reason 1: Historical Cases of Investigator-Participation in Pain Research

In the early twentieth century, scientists commonly viewed self-experimentation an essential part of medical research. Self-exposure to untested interventions was believed the most ethical way to assess human responses to those interventions, and to catalyse further research (Dresser 2013). Some of this research helped to found new scientific fields. Respiratory physiology was one such field, formed in the 1920s through self-experiments conducted by scientist John Haldane and colleagues. In 1984, physician Barry Marshall ingested Helicobacter pylori, which helped to establish the link between H. pylori and gastric pathology, and in 1992, self-experiments conducted by Mike Stroud and Ranulph Fiennes in Antarctica advanced understanding of nutrition in extreme conditions.

Self-experiments to study pain experience have been published by Sir Head (1920), Woollard and Carmichael (1933), Landau and Bishop (1953), Price (1972), Price et al. (1977), and Staud et al. (2001, 2008), to name only a few significant investigator-participants who studied pain. William Landau and George H. Bishop conducted standard psychophysical research on themselves to study the qualitative differences between “first pain” and “second pain” (i.e. “double pain”; later termed epicritic and protopathic pain) (Landau and Bishop 1953). Initially, Landau and Bishop identified through introspection the differential experiential qualities between first and second pain, followed by scientifically informed speculation about the mechanistic difference between the two types of pain. They discovered that first pain was sharp or stinging, well localized, and brief, whereas second pain was dull, aching, throbbing, or burning, and poorly localized, and longer lasting. The qualities of second pain were felt when skin C-nociceptors were stimulated.

These findings were subsequently confirmed by Price (1972) based on researcher and naïve participant introspective reports. Temporal differences between first and second pain were introspected on and mechanistically explained in terms of central temporal summation in studies by Price et al. (1977), and Staud et al. (2001, 2008), using investigator- and naïve-participants.

Conducting self-experiments to study referred pain, collaborators Herbert Woollard and Edward Carmichael observed that 300 g of weight placed on the right testicle produced slight discomfort in the right groin, while 650 g on the right testicle caused severe pain on the right side of the body. They confirmed that injury to the testicles caused pain to be referred throughout the body. For instance, as the weight on the testicle increased to over 900 g, they reported pain “of a sickening character” not only in the groin but also spreading across the back (Woollard and Carmichael 1933).

Self-experimentation on pain has on occasion led to surprising results. The psychologist B. Berthold Wolff self-experimented in his pain psychophysics laboratory, varying thermal pain which was produced at that time by briefly shining a strong light on a spot on the forearm blackened with candle black for a calibrated time and intensity of exposure (Hardy et al. 1940). On one occasion, Wolff pushed the button to deliver the noxious stimulus, but then something unexpected happened: he screamed with pain, which was brief but intense and filled his whole body. He described it as the most intense whole-body pain he had ever experienced. Wolff later discovered that the light stimulus had been knocked off its correct aim, and had missed his forearm altogether and instead diffused onto the opposite wall where it created a very strong flash of light throughout the normally dark room. Wolff speculated that, as he was expecting to feel pain, the unexpected flash of strong light had the same effect, producing an experience of pain.

It is unclear if investigators today independently conduct self-experiments or co-participate in their own pain studies. The convenience of recruiting participants from university classes and the internet may have made self-experimentation or co-participation of pain seem somewhat redundant to researchers. The Declaration of Helsinki advises on conducting ethical research using patients and healthy volunteers, although it is unclear if this is reason enough for challenging independent self-experimentation or investigator co-participation. In self-experiments, the researcher is both investigator and single participant, so the requirement for informed consent could be waived. Still, there is clear historical precedent for scientific investigators successfully observing and analyzing their own experiences of pain. The results of such published self-experiments have been integrated into the body of knowledge of pain, and replicated in numerous studies using naïve participant introspective reports and standard scientific methods.

References

Dresser R (2013) Personal knowledge and study participation. J Med Ethics. doi:10.1136/medethics-2013-101390.

Hardy JD, Wolff HG, Goodell H (1940) Studies on pain: a new method for measuring pain threshold: observations on spatial summation of pain. J Clin Investig 19(4):649–657.

Head H (1920) Studies in neurology. Oxford University Press, London.

Landau W, Bishop GH (1953) Pain from dermal, periosteal, and fascial endings and from inflammation: electrophysiological study employing differential nerve blocks. AMA Arch Neurol Psychiatry 69(4):490–504.

Price DD (1972) Characteristics of second pain and flexion reflexes indicative of prolonged central summation. Exp Neurol 37(2):371–387.

Price DD, Hu JW, Dubner R, Gracely RH (1977) Peripheral suppression of first pain and central summation of second pain evoked by noxious heat pulses. Pain 3(1):57–68.

Staud R, Vierck CJ, Cannon RL, Mauderli AP, Price DD (2001) Abnormal sensitization and temporal summation of second pain (wind-up) in patients with fibromyalgia syndrome. Pain 91 (1):165–175.

Staud R, Craggs JG, Perlstein WM, Robinson ME, Price DD (2008) Brain activity associated with slow temporal summation of C-fiber evoked pain in fibromyalgia patients and healthy controls. Eur J Pain 12(8):1078–1089.

Woollard HH, Carmichael EA (1933) The testis and referred pain. Brain 56(3):293–303.

Should investigators introspect on their own pain experiences as study co-participants? – Simon van Rysewyk and Carl L. von Baeyer

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van Rysewyk S, von Baeyer CL. Should investigators introspect on their own pain experiences as study co-participants? In: van Rysewyk S (2016). Meanings of Pain. Springer International Publishing AG: Switzerland.

Abstract

The question of investigators introspecting on their own personal pain experiences in pain studies has received little attention in the literature. Study of this question may reflect ethical reservations about the many points at which self-interest may lead us to introspect on personal experiences through personal biases that in turn impair professional decision-making and perception. Despite this valid concern about research co-participation, we offer three reasons why investigators can introspect on personal pain as co-participants in their own pain studies. First, there is historical precedent for investigator participation and co-participation in scientific pain research using introspection as a study method. Second, general concerns about variability in self-report based on introspection on pain experience partly derive from true fluctuations in personal pain experience and perceived interests in self-reporting pain, not simply error in its scientific measurement. Third, the availability of the Experiential-Phenomenological Method, a mixed research method for the study of human experiences, allows investigators to co-participate with naïve participants in their own studies by encouraging passive introspection on personal pain experiences.

Download a copy of the chapter here.