symmetry and perfection

One gap to fill in pain management


There have been some great gains in pain neuroscience over the past few years – we know more about mirror neurones, cortical smudging, “placebo” and how cognitive behavioural therapy changes the brain. It’s sexy. There are also some rather unsexy areas of pain management, and one of these is about how people learn about their chronic pain.

It takes most people several years to get a definitive diagnosis for even well-known inflammatory problems like ankylosing spondylitis (Salvadorini, Bandinelli, Delle Sedie, Riente et al, 2012) – nine years is a long time to have mysterious pain that no-one seems to have a handle on. We also know that people with pain want some very specific things from their consultations: a definite diagnosis, acknowledgment of pain, acknowledgement of expert knowledge from the person with pain, to be seen as an individual rather than a diagnosis (Haugli, Strand & Finset, 2004).

My research looked at the ways to cope used by people who live well despite their pain. The first part of living well involves making sense of what is going on.

When a person first experiences pain, mostly it’s thought of as a typical acute pain problem. When the pain doesn’t settle down, or if it feels different from other experiences of pain, people will begin searching for information. Eventually, and this can take a long time (years), there’s a match between “what I feel”, “what I’ve learned” and “a label”. The label represents a lot to people living with pain. It means validation (I’m not going crazy, I’m not imagining it, I’m not being weak), it means the problem is understandable, and it means someone knows what is going on.

At the same time as getting external validation for the problem, people are trying to work out what their pain does on a day-to-day basis. Where do I hurt? What does it feel like? What’s normal? Over the past few years as apps for our devices have been developed, these are useful tools people can use to track their pain from day-to-day.  I’ve seen incredibly detailed diaries where people have written down their pain intensity, and what they’ve done for months and months in an attempt to get symptom understanding.

And then there’s the need to predict the effect of chronic pain on what needs to be done in life. And this is a gap I think we need to fill.

When people are busy learning about their pain, and at least until they have diagnostic clarity, life seems to get put on hold. It’s a recognised feature of this phase of having pain, life can become “a viscous long-lasting now”, with temporal disorganisation (Hellstrom & Carlsson, 1996; Hellstrom, 2001).  In other words, people’s sense of the future and moving towards this gets disorganised because the world that used to be predictable has become chaotic.  They’ve lost the ability to dream about what might be there for the future, because now dominates everything.

This occurs because humans make plans based on a sense of self, of who we are, what we do, our contributions and roles. When chronic pain is present, people’s sense of self (the collection of knowledge about what-it-feels-like-to-be-me) is disturbed because all the everyday things they need to do are more difficult. Pain intrudes.

I’ve looked for any systematic tools to give people so they can learn how to predict the effect of their pain on daily activities (occupations, to use the language of occupational science and occupational therapy).  I haven’t found anything yet.

The whole idea that someone might want to, or need to, develop this kind of “somatic awareness” is counterintuitive. I mean, most programmes ask people to complete questionnaires that are used by clinicians to identify their problems and what therapy should target. Much of therapy is intended to extend what people can do, to help them go beyond their existing beliefs and limitations. We do this by engaging people in physical activities such as a circuit gym or a set of exercises that gradually gets increased over time.

BUT How does knowledge drawn from a set of exercises, or a circuit gym, transfer to the daily life patterns of a 34 year old builder? Or a 28 year old bank clerk? Or a teacher? Or a retired merchant navalman?

“Somatic awareness” as a clinical need in people with chronic pain is not a new idea. Strong and Large (1995), and Large and Strong (1997) identified that people who were not seeking treatment for their low back pain used “somatic awareness” to titrate their activity levels, and this formed a large part of their coping approach. Crowe, Whitehead, Gagan, Baxter, Pankhurst and Valledor (2010) also found that people “listen to their body” so they can adjust what they expect from themselves. Fisher, Emerson, Firpo, Ptak, Wonn and Bartolacci (2007) identified that by understanding the variability of pain, people could modify their occupational engagement, as did Persson, Andersson & Eklund (2011).   There are many more.

I think an obstacle to developing this aspect of self-management might be our fear that by asking people to notice what is going on in their bodies, we are reinforcing “pain behaviour”. I’m not sure that this is in fact what happens, but it’s an area for future research. The behavioural paradigm still has a strong influence on how we think about attention and pain. And we’ve all probably seen those people who fixate on pain fluctuations to the point of obsession, and usually because they’re keen to do whatever it takes to reduce the pain.

Somatic awareness, making sense, symptom understanding and occupational existing are tools used by people who are naive to pain management. Maybe in our efforts to help those who have a great deal of trouble with their pain, we’ve forgotten to build on the strengths used by those who cope well.

 

Allegretti, Andrew, Borkan, Jeffrey, Reis, Shmuel, & Griffiths, Frances. (2010). Paired interviews of shared experiences around chronic low back pain: Classic mismatch between patients and their doctors. Family Practice, 27(6), 676-683. doi: http://dx.doi.org/10.1093/fampra/cmq063

Crowe, M., Whitehead, L., Gagan, M. J., Baxter, G. D., Pankhurst, A., & Valledor, V. (2010). Listening to the body and talking to myself – the impact of chronic lower back pain: a qualitative study. International Journal of Nursing Studies, 47(5), 586-592. doi: 10.1016/j.ijnurstu.2009.09.012

Fisher, G. S., Emerson, L., Firpo, C., Ptak, J., Wonn, J., & Bartolacci, G. (2007). Chronic pain and occupation: an exploration of the lived experience. American Journal of Occupational Therapy, 61(3), 290-302.

Haugli, Liv, Strand, Elin, & Finset, Arnstein. (2004). How do patients with rheumatic disease experience their relationship with their doctors? A qualitative study of experiences of stress and support in the doctor-patient relationship. Patient Education and Counseling, 52(2), 169-174. doi: http://dx.doi.org/10.1016/S0738-3991%2803%2900023-5

Hellstrom, Christina. (2001). Affecting the future: Chronic pain and perceived agency in a clinical setting. Time & Society, 10(1), 77-92. doi: http://dx.doi.org/10.1177/0961463X01010001005

Hellstrom, Christina, & Carlsson, Sven G. (1996). The long-lasting now: Disorganization in subjective time in long-standing pain. Scandinavian Journal of Psychology, 37(4), 416-423. doi: 10.1111/j.1467-9450.1996.tb00673.x

Large, Robert, & Strong, Jenny. (1997). The personal constructs of coping with chronic low back pain: is coping a necessary evil? Pain, 73(2), 245-252. doi: http://dx.doi.org/10.1016/S0304-3959(97)00100-0

Persson, Dennis, Andersson, Ingemar, & Eklund, Mona. (2011). Defying aches and revaluating daily doing: occupational perspectives on adjusting to chronic pain. Scandinavian Journal of Occupational Therapy, 18(3), 188-197. doi: http://dx.doi.org/10.3109/11038128.2010.509810

Salvadorini, G., Bandinelli, F., Delle Sedie, A., Riente, L., Candelieri, A., Generini, S., . . . Matucci-Cerinic, M. (2012). Ankylosing spondylitis: how diagnostic and therapeutic delay have changed over the last six decades. Clinical & Experimental Rheumatology, 30(4), 561-565.

Strong, J., & Large, R. (1995). Coping with Chronic Low Back Pain: An Idiographic Exploration Through Focus Groups. The International Journal of Psychiatry in Medicine, 25(4), 371-387. doi: 10.2190/H4P9-U5NB-2KJU-4TBN

8 comments

  1. Bronnie, the gap to which you refer is a huge one and in my opinion it is akin to trying to understand the nature of consciousness with the tools that we have available to us. In our 2008 paper – Pain Medicine and its models: helping or hindering? – we used the term “aporia” in the context of the experience that we know of as “pain”. The advances in “pain neuroscience” since then
    have shed some light upon what may be happening in the brains of people in pain but they seem to have been predicated upon the outdated notion that pain is a concrete “thing” or entity that resides somewhere within the brain.

    Upon reflection, and with tongue in cheek, might I add suggest that the IASP add another “P” to its acronym so that it becomes the International Association for the Study of People in Pain?

  2. Now there’s a thought John. I remember being told by Nick Kendall that IASP was about “pain” not “pain management” but I think it’s impossible to separate the two because pain is only understood in the context of human experience. Other mammals, in particular, also experience pain but we can’t even approach an understanding of what this is like for a dog, rat or mouse. But at least we can ask humans about their experiences, and we can compile data across a range of different knowledge domains and so begin to step towards a better understanding of the aporia of pain.
    I think neurobiological mechanisms are involved in the “what it feels like” to be a person-in-pain, but I think they are shaped by multiple psychological and social factors (this probably reflects my realist perspective, I think.) I do believe there are problems with drawing purely on what occurs in the brain – and to progress our understanding we’ll need to solve that hoary old problem of “what is consciousness” perhaps!

    1. “I think neurobiological mechanisms are involved in the “what it feels like” to be a person-in-pain…”

      Damage to the nervous system is very revealing about pain phenomenology. Mountcastle (1968) describes the effects of damage in the dominant parietal lobe (which plays a role in the symbolic organization of experience and behaviour): “A patient with such a lesion may retain a normal threshold to pain but no longer appreciate its destructive significance.” This patient could be said to “feel” pain but not incorporate it into his thinking. He therefore has a defect in the ability to coordinate his pain into an intentional pattern of activity aimed to avoid harm.

      “…but I think they are shaped by multiple psychological and social factors…”

      For sure. There is an intimate relation between the appreciation of pain and its motivational or emotional qualities as revealed in the organization of behaviour:

      “Bilateral lesions of the mediodorsal nucleus or bilateral frontal leukotomy may diminish the anguish of constant pain but such lesions also produce drastic changes in the personality and in the intellectual capacities of those subjected to them. The reactions of these patients to individual noxious stimuli may even be exaggerated, but they state that while their pain persists as before, it is no longer so disturbing and they may require little or no pain-relieving medication. With time there is usually some regression of the disorders in personality and intellectual functions associated with these lesions, but with it a recurrence of severe suffering from pain (Mountcastle, 1968, 1445).”

      V. B. Mountcastle (1968). Medical Physiology (12th ed.). St Louis: Mosby.

      1. And this finding applies to people who use mindfulness meditation or hypnosis – the evaluative areas of the brain reduce their activity, which subsequently reduces the emotional areas.

        Derbyshire, Stuart W., Whalley, Matthew G., & Oakley, David A. (2009). Fibromyalgia pain and its modulation by hypnotic and non-hypnotic suggestion: An fMRI analysis. European Journal of Pain, 13(5), 542-550. doi: http://dx.doi.org/10.1016/j.ejpain.2008.06.010
        Ives-Deliperi, Victoria L., Solms, Mark, & Meintjes, Ernesta M. (2011). The neural substrates of mindfulness: An fMRI investigation. Social Neuroscience, 6(3), 231-242. doi: 10.1080/17470919.2010.513495
        Vanhaudenhuyse, A., Boly, M., Balteau, E., Schnakers, C., Moonen, G., Luxen, A., . . . Faymonville, M. (2009). Pain and non-pain processing during hypnosis: A thulium-YAG event-related fMRI study. Neuroimage, 47(3), 1047-1054. doi: http://dx.doi.org/10.1016/j.neuroimage.2009.05.031

  3. Which raises another hoary old problem – how will we know when we have solved it? Another task for the neuro-philosophers?

  4. If you didn’t mention there was a gap, I probably wouldn’t have noticed it.

    Anyways, in the recent meditation retreat I attended, there were a few sessions called “sittings of strong determination”. This was really interesting – we had to stay in our positions (and cross-legged meditation positions aren’t the most comfortable ones) without moving our bodies at all (not our legs, not our eyes, not the position of our hands) for as long as we could, a full hour if possible. We were supposed to be aware of sensations, but observe them in a detached manner, not react to them. There were many people who started the course with some form of chronic pain actually, but by the last day (when they were allowed to talk and share their experiences) they related that they didn’t feel the pain anymore. You may want to check it out, it took me 3 days to develop this skill (although it was only introduced to the students on the 4th day).

    http://www.vipassanaforum.net/forum/index.php?topic=2529.0

    Something I have realised from this experience (and also in my recent experiences in pain management) is that skills to deal with pain are very subtle and need to be cultivated consistently before one needs it (just like after the meditation course we were encouraged to go back and continue deliberate practice of detached observation of our bodily sensations – and many things in life also need such deliberate cultivation, like working out and eating healthy for example). Personally I am very good at dealing with pain and working through pain because of my background as a Taekwondo athlete and my coach’s policy was no painkillers because they could dull senses and affect safety performance. When in the ring fighting with an opponent in a dangerous combat sport (and typically having many rounds of fights to go) we really get plenty of hands on practice on observing but not reacting to pain. This was a skill that I realised served me very well later on in life. But then, after developing this skill, we also have to learn how to recognise when a pain needs to be addressed and when it needs to be worked through, but that’s another matter altogether.

    1. That’s a really interesting observation but holds very true for me as well. There is a lot of information on mindfulness for chronic pain, but the bit that’s missing for me is a researched process for noticing pain qualities and intensity and the effect on performance. Doing this in a systematic way. It seems to me that this is the predictive task many people need but aren’t usually helped to develop because the early operant conditioning model of pain management suggested this would increase avoidance. I’m not sure this happens, but I think it needs an experimental design study to find out – research funding!!!
      I agree, it’s a bit of a balancing act – notice pain, but choose when to do something about it, not too soon (miss out on good things, don’t strengthen than internal psychological “muscle”) and not too late (run out of puff, find it hard to recover, remain unaware of how to do nothing). In the case of chronic pain we know there’s no harm to tissues in persisting at a task, but maybe we haven’t really recognised the psychological fatigue that can become eroded when people persist beyond what they can manage over the longer term. Food for more thought.

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