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