self management

Self-managing chronic pain


I have long been a proponent of helping people who live with pain to take control of their situation and actively self-manage as much as possible. My rationale has been that people who feel they are in control of some parts of their life are more likely to feel confident when their pain flares up, or when they have a life set-back. Today I took a second look at some of the papers on self-management published over the past few years, and I think it’s time to be a little critical.

The first issue to deal with is defining self-management. To me, self-management means knowing as much as possible about the health condition (whatever it is), knowing as much as possible about various treatments, working hard to learn and integrate ways of coping so that I (because yes, self-management is something I use for my fibromyalgia) can do the things I most value. By doing this, I can be more like who I want to be, rather than being defined by my pain, or what other people expect from me. But, self-management isn’t nearly as clearly defined as this in many people’s minds.

Here’s one definition “We defined self-management as the strategies individuals undertake to promote health (e.g., healthy living, exercising), manage an illness (e.g., manage symptoms, medication, and lifestyle changes), and manage life with an illness (e.g., adapt leisure activities or deal with losses caused by illness)” (Audulv, Asplund & Norbergh, 2012). Morden, Jinks and Ong (2011) found from a study of individual’s perceptions that managing chronic conditions is not solely related to medical recommendations and that self-management is central to maintaining a sense of ‘normality’ in everyday life or to reasserting one’s position in the social world when living with a chronic illness and demonstrating competency from a moral perspective.

Interestingly, a definition from COPD management describes self -management as “… programmes that aim to teach the skills needed to carry out medical regimens specific to a long-term disease and to guide behaviour change to help patients control their own condition and improve their well-being”(Effing,  Bourbeau, Vercoulen, Apter, Coultas, Meek, et al.2012). The distinction between chronic pain self-management and other chronic illness self-management lies in the need to address broader “living” issues rather than just learning to “carry out medical regimens”. And that is both the problem and the distinction between chronic pain self-management and other chronic disease self-management approaches.

Let me unpack this: For people living with COPD, or diabetes, there are critical medical management practices that need to be learned and integrated into daily life so that the underlying medical condition doesn’t get worse and lead either to complications, or even early death. The focus on self-management in these situations seems to be on the medical tasks that must be undertaken. The end results are often measured in terms of reducing the number of extreme events – like having hyperglycaemia, or being admitted with a chest infection and needing oxygen.

Now if I turn to the qualitative literature on self-management in chronic pain, what is very obvious is that self-management isn’t about the medical procedures that must be followed. It’s far more about living life – and integrating ways of getting to do what’s important without too many flare-ups that get in the way of doing these things. In fact, Morden, Jinks & Ong (2011) found that in people living with knee osteoarthritis, self-management wasn’t something people identified with – what might have been classified by clinical people as “exercise” or losing weight or keeping active weren’t thought of as “self-management” by people living with knee OA. They thought this was “just getting on with it”. I particularly liked one comment : “because people perceived their activities to be an integral part of their daily routine they were not surfaced as deliberate action.” In other words, when people focus on living life, coping strategies become habits and routines that are secondary to the doing of life.

Mike Nicholas and colleagues have looked into coping and self-management extensively as part of ongoing research associated with the Royal North Shore Pain Management Programme. they were interested in whether it’s possible to find out if adhering to strategies introduced within a programme was predictive of outcome: in other words, did people who strongly adhered to what they learned during a programme ultimately gain better quality of life, lower pain, less disability and feel better? Surprisingly, they did – I say surprisingly because in a couple of meta-analyses (for example Kroon, an der Burg, Buchbinder, Osborne, Johnston & Pitt, 2014; Oliveira, Ferreira, Maher, Pinto et al, 2012) self-management approaches made very little, if any, difference to pain and disability both over the short and long-term.

What does this mean? Well, quite apart from the blurry definitions of self-management, and the lack of standardisation inside self-management programmes, I think we need to ponder on just what we’re asking people to do – and how they (we) regard the strategies we hope people will develop. Cutting to the chase, in chronic pain management we risk people knowing “about” strategies, but failing to adopt them in daily life because we haven’t really thought about daily life and what this is to each individual. When I think about the vast number of changes to self-concept that chronic pain wreaks on people, I think it’s hard to be ready to adopt these new techniques until “who I am” is included in the mix. Maybe one reason for the modest improvements after self-management is that we’re not thinking about self-identity and values and that these need attending to so that using coping strategies is worthwhile. It’s yet another reason I think occupational therapists offer a great deal in chronic pain self-management – who are you? what do you want your life to stand for? what things do you do (or want to do) that makes your life yours? Finally, to paraphrase as my colleague Ben Darlow, living with low back pain (read: any chronic pain) means balancing the need to minimise pain fluctuations with the things that make life worth living. That’s what I call “flexibly persisting”.

Audulv, A., Asplund, K., & Norbergh, K.-G. (2012). The integration of chronic illness self-management. Qualitative Health Research, 22(3), 332-345. doi:http://dx.doi.org/10.1177/1049732311430497

Effing, T. W., Bourbeau, J., Vercoulen, J., Apter, A. J., Coultas, D., Meek, P., . . . van der Palen, J. (2012). Self-management programmes for copd moving forward. Chronic respiratory disease, 9(1), 27-35.

Morden, A., Jinks, C., & Bie Nio, O. (2011). Lay models of self-management: How do people manage knee osteoarthritis in context? Chronic Illness, 7(3), 185-200.

Nicholas, M., Asghari, A., Corbett, M., Smeets, R., Wood, B., Overton, S., . . . Beeston, L. (2012). Is adherence to pain self-management strategies associated with improved pain, depression and disability in those with disabling chronic pain? European Journal of Pain, 16(1), 93-104. doi:10.1016/j.ejpain.2011.06.005

Oliveira, V. C., Ferreira, P. H., Maher, C. G., Pinto, R. Z., Refshauge, K. M., & Ferreira, M. L. (2012). Effectiveness of self-management of low back pain: Systematic review with meta-analysis. Arthritis care & research, 64(11), 1739-1748.

Live Plan Be


There are times in my work when I feel like I’m banging my head against a brick wall. Even though I’ve been saying most of what I write about on here since forever, it seems to take SUCH a long time for anything much to change! BUT then along comes something totally cool to brush my frustration away, and today I want to talk about Live Plan Be developed by Pain BC in Vancouver, Canada.

A couple of years ago I was given the privilege of being asked to prepare a document analysing the content and approach of self management programmes. I reviewed the Cochrane systematic reviews which all supported a multidisciplinary self management approach as the foundation for chronic pain management. I then turned to the qualitative research to investigate what it’s like to be part of a programme from the participant’s perspective. I found that people attending these programmes enter a journey of self-discovery, that some of the skills don’t seem to make sense at first – but do when the person returns to their own setting. I also found that people living with chronic pain relish the opportunity to feel that their pain is acknowledged, that others on the programmes know what it’s like to live with chronic pain so they don’t have to spend ages trying to explain themselves, and to have the chance to be with others who ‘get it’ means breaking out of the isolation that chronic pain can bring.

I also took a look at the ways these programmes can be delivered. While many programmes are face-to-face, with technology making online programmes increasingly more responsive and flexible, I wanted to see whether there were major differences in the outcomes of each programme. Although it’s difficult to tell because the populations using both approaches are not exactly the same, from what I could find, the outcomes were comparable. This is really exciting because it means more people can get access to approaches that have solid research underpinning them without having to travel to and from, and without the staffing needed for face-to-face programmes.

As a result of my report, I suggested that Pain BC might like to investigate developing a whole new programme for helping people live well with chronic pain, and to make this an online programme with some of the features that the research into online behaviour change programmes has identified as useful. Things like having a discussion forum so participants can connect and share their experiences of the reality of living with chronic pain. Having action prompts so that people don’t just read something – but also get prompted to DO something with that information – and most importantly, have this tied to where the person is currently at in their journey towards making changes to live with their pain. I recommended having some self-assessments so people can track their progress, and a place where they could record the things that worked, and those that didn’t work, so it’s easy to share with other people including health professionals.

I’m SO excited to see how Live Plan Be has come together – and it’s now LIVE!

The team that has put this together has done an amazing job, exceeding my wildest dreams of what the programme might look like. It’s sophisticated, easy to use, has lovely graphics and video recordings of real people doing real things, has SO MUCH information on it – and it’s free! If you have chronic pain, or you work with people living with chronic pain, I would love you to take a look at it, and try it out. Then let me know what you think. Whatever feedback you give, you’ll know that the team will work hard to keep on making it better and more useful, so please let them know.

Meantime, I’m hoping that this will bring some hope to people who have struggled with chronic pain, and would like to learn to live well.

Your brain has no delete button


Yesterday, nearly five years after the devastating earthquakes in Christchurch, New Zealand, we had another rude reminder that we live on an active fault zone. A 5.7 magnitude earthquake hit just after lunch, throwing me to the ground, breaking our pendant lights, and a bottle toppled off the shelf beside the toilet, falling into the toilet and smashing the rim (lesson to the men in the house: do not leave the toilet seat up!). Needless to say, my heart was racing for a wee while afterwards!

People living in our fair city have had thousands of quakes to deal with over the past five years, most of them not as powerful as yesterday’s one, but nevertheless rather unsettling. In reflecting on the experience I’m reminded that our nervous system is wired more towards learning and reacting to immediate threat – and anything that represents a threat – than it is to calming and soothing the beast within. In fact, there’s good evidence to suggest that we don’t ever “unlearn” a learned response, instead we develop new pathways that can become stronger and more heavily myelinated than the learned paths – but given a similar context we’re as likely as not to activate that same old set of neural impulses and some researchers suggest this is because of epigenetic changes. (Take a look at this study in rats for one reason – it seems contextual memory triggered by cues is more powerful than we thought!)

As I mused on my startle response which is as well-developed as ever (though I jump less often at trucks going past than I did in the months just after the big quake), I thought about our experience of low back pain – or indeed any other chronic pain. While we’ve got very excited about neuroplasticity, and I think we should, I also think we need to temper our enthusiasm with some reality checks. Even though we seem to be able to reduce pain by using neuroplasticity within our treatments (see Pelletier, Higgins and Bourbonnais, 2015, among others), we need to remember that the pathways associated with chronic pain are many – and not just those to and from the sore part! In fact, because we’re fantastic learning creatures, there are many, many ways in which we encode an experience.

We have already seen that seeing a painful limb can increase the experience of pain in people with CRPS and vice versa (Sumitani, Shibita, Iwakura, Matsuda, Sakaue, Inoue et al, 2007), and this phenomenon has been used in mirror therapy and virtual reality treatments for people with CRPS and some other forms of pain (Foell, Bekrater-Bodmann, Diers & Flor, 2014). As a result of this fascinating finding, treatments using laterality, graded motor imagery and novel movements have all become very popular with varying degrees of effectiveness (especially outside the clinic!).

What perhaps we’ve forgotten is that because we’re incredibly good at learning, we’ve associated not just the “internal” location/intensity/quality of that experience, but also a whole bunch of other associations – words (pain, ouch, suffer, back, leg, doing, lifting, crumbling, disc – and others!), movements (sitting, walking, turning, twisting, crouching, climbing), emotions (happy, sad, glad, awestruck, helpless), images (of a back, leg, someone else sitting or walking or moving), locations (treatment facilities, workplace, the garage, making the bed, the pill bottles in the bathroom) – the list goes on! Even the smell of liniment or whatever rubbing lotion was used can bring all those associations back into consciousness.

And each association branches off and associates with other things in a never-ending network of related experiences and memories and relationships. Is it any wonder that some people don’t miraculously “get better” when we decide to “educate” someone about their pain? Especially if we haven’t given them the respect of listening to how they’ve made sense of their situation…

Now in the series of earthquakes from 2011 until now, I haven’t ever really become overwhelmed with anxiety and helplessness. Yes I have been fed up, frustrated, saddened, and I’ve grieved, got angry at bureaucracy and thought that things surely could be done more quickly. Until yesterday, when the growing anxiety (because the houses being built close to us mean there are many hundreds of thumps and thuds as foundations are hammered into the ground far deeper than ever before) I’d been feeling over the past month or so really got triggered by a very real and unexpected event.

Intellectually I know this quake is just another in the same series as we’ve been having. Nothing terribly awful happened. No-one got hurt. BUT my jitters are back – and every time I look at cracks in the ring foundation, the smashed toilet, look at my broken vase, or go to use the Pyrex jug that got smashed, I’m reminded that this event has happened – and could again. Pictures of the cliffs falling at Sumner, clouds of dust rising from them as they tumbled into the sea; images of broken crockery at Briscoes and wine and beer at the local supermarket; the news, and friends talking on Facebook – all of these remind me of what we’ve just been through and have been for so long.

Now picture the person you’re about to see today. That person with the painful back. The person who flicks through the magazines in your waiting room and sees adverts for lotions, analgesia. Who smells the scents in your area. The one who finds it so hard to roll over in bed every night. Or to sit and watch TV. Just remember that you may be able to develop new and novel pathways for moving so that the pain itself isn’t triggered by movements – but all these other associations are still there, and will be from now on. And think beyond the clinic door and into your patient’s daily life. How will you help them transfer the feeling of safety that being with YOU evokes into a feeling of safety everywhere they are? This is why developing effective self management skills, especially becoming nonjudgemental despite experiencing pain is so very, very important.

 

Foell, J., Bekrater-Bodmann, R., Diers, M., & Flor, H. (2014). Mirror therapy for phantom limb pain: Brain changes and the role of body representation. European Journal of Pain, 18(5), 729-739. doi:10.1002/j.1532-2149.2013.00433.x

Pelletier, R., Higgins, J., & Bourbonnais, D. (2015). Addressing neuroplastic changes in distributed areas of the nervous system associated with chronic musculoskeletal disorders. Physical Therapy, 95(11), 1582-1591.

Sumitani, M., Shibata, M., Iwakura, T., Matsuda, Y., Sakaue, G., Inoue, T., . . . Miyauchi, S. (2007). Pathologic pain distorts visuospatial perception. Neurology, 68(2), 152-154.

Connecting: A cognitive behavioural approach to initial interviews


As I’ve been reading and thinking about the ways health professionals work with people who live with pain, my mind keeps coming back to the power of human connection. Pain is ephemeral: we can’t touch it, see it or truly understand the “what it is like” for that person to experience that pain.  The only way we can get to understand even a little of another’s pain is when we take the time to hear what they’re saying. This post is about how a cognitive behavioural approach can inform our communication and build a bridge towards shared understanding. Only once this is begun can we start “treatment”.

A cognitive behavioural approach is based on the idea that people are not blank canvases, reflecting whatever is thrown at them. Instead people actively think about what is happening, seeking out information they think is relevant, depending on their past experiences, the framework they use to understand what’s going on, and to make predictions in light of what they want to do (goals).

What this means is that a conversation about pain is like dipping your toe into a stream. The stream keeps moving on, but the water gets swirled around where your toe is dipped. Whatever is upstream comes down along the waterways, where you dip your toe is here and now, and depending on the depth of your toe-dipping (and the stream’s flow) will influence the stream’s direction downstream. If your conversation is superficial and only concerned with issues the person doesn’t feel is relevant, your toe-dipping isn’t going to have much influence. But if you take the time to get into the water, immersing yourself in what the person is really saying (where they’ve been, what they’ve learned, where they want to go), you may well have a huge influence on their future directions.

What’s the focus of an initial interview?

An initial interview usually focuses on “what are the problems?” and “what can I do?” Of course, most clinicians also recognise the importance of establishing rapport, and the need to be empathic. The actual factors considered important within an initial interview vary depending on the model of health or disease adopted by the clinician. For a strongly biomechanically-oriented clinician the factors may be muscle length, strength, range of movement, loading and tolerance. For a clinician using a biopsychosocial framework, hopefully weight will also be placed on beliefs, understanding, attitudes, past experiences, emotions, predictions for the future, past treatments and what has been learned from these, existing stressors, vulnerabilities and strengths. And of course, a whole heap of family, friends, workplace and social factors should also form part of this assessment.

I’ve attached a semi-structured interview I’ve used clinically when working with people who live with chronic pain – this interview can take 60 – 90 minutes, depending on the complexity of the person’s narrative – Self Management Semistructured interview. I don’t think this is the only way to approach learning about someone else’s pain, but it provides me with a very sound basis for deciding whether I can help the person, and more importantly, I think it gives the person a chance to feel that I’m really listening.

To abbreviate this interview, I’d hone in on two main questions that I need to answer:

  1. Why is this person presenting in this way at this time?
  2. What can be done to reduce this person’s distress and disability?

All of my questions are designed to help me answer these two questions. Of course, they’re not going to work at all unless the person I’m talking with is part of this conversation. After all, they have ideas about what they want from me, why they’re looking for help, and what’s led them to come to me now rather than seeing someone else, or at another time.

There’s something missing from this interview though!

Something you can’t get from a simple list of questions is how to ask them and how to respond to the answers. I used to think the art of asking good interview questions lay with the wording, but I’m not so sure now. I think it’s about my attitude. Let me unpack this.

Socratic questioning is the main orientation I use in my initial interview. Socratic questioning is about guided discovery, or a dialogue between me and the other person in which I guide both of us towards discovering things the person knows but may not know they know. Confused? Well, here’s an explanation of the process. (BTW I follow Christine Padesky’s approach for Socratic questioning – click here for more info)

Padesky states “Socratic questioning involves asking the client questions which: a) the client has the knowledge to answer; b) draw the client’s attention to information which is relevant to the issue being discussed but which may be outside the client’s current focus; c) generally move from the concrete to the more abstract so that; d) the client can, in the end, apply the new information to either reevaluate a previous conclusion or construct a new idea.”

To begin with, we need to find out what the person knows they know – so I will ask Informational Questions.  These include things like “what do you think is going on?”; “what’s your theory about your pain?”; “why do you think your sleep is so bad right now?”.

The second and equally important part is Listening. Not only am I listening to (and then reflecting that I’ve heard), I’m listening for words or phrases that are idiosyncratic, have emotional impact, those metaphors and images the person uses, the emotional feeling tone of their account.

The third is Summarising in which I gather together several phrases or responses given by the person, and present them back to him or her to make sure I’ve heard them correctly, but also to give them a chance to hear what they’ve been saying. Sometimes it’s only by talking that a person finds out what they’ve been thinking (ever had that happen to you?!). In Motivational Interviewing this is called “giving a bouquet” of what the person has been saying. I like that image!

The final phase is Synthesising, or Analytical questions. This occurs after you’ve spent the time finding out what the person thinks, listened carefully and then reflected this, explored the unique meanings the person puts on aspects of what is going on for them, and finally you’ve summarised and reflected their narrative as a whole – synthesising questions help the person make sense of what they’ve just said, pulling it all together. I sometimes use phrases like “so where does this leave you?” or “what does all that mean now?” or “what is your next best step?” Smart readers will recognise some of the Motivational Interviewing phrases in here!

The attitude I bring to this kind of encounter is one of curiosity. I’m genuinely curious to try to understand how this person has developed his or her understanding of their situation. This helps me step away from judging their situation as “good” or “bad, and in particular helps me avoid judging them as “good” or “bad” (or “coper” or “noncoper”). I constantly remind myself and others that people generally don’t get up in the morning to do dumb things. There’s usually a reason for people being in the situation they’re in – and often it’s about lacking accurate information.

Putting it together

Having gathered information, reflected what you’ve understood and confirmed this understanding with the person – now’s your chance to help that person develop their own, personal understanding of what’s going on. I like to call this their own personal model of pain. It won’t be complete, but it’s a great beginning. Padesky suggests asking “What do you make of this? How do you put this? How do you put these ideas together?”

For more information on a strengths based approach to cognitive behavioural therapy (not the same as a cognitive behavioural approach, but very interesting to read) – go here for a full paper by Padesky and Mooney, published in 2012, and for a much more detailed discussion of Socratic questioning in a panel – go here.

 

 

Scopes, roles, boundaries, contributions: who does what in a brave new healthcare world?


I have been meaning to write a post like this for some time now, but prompted to today by two things: one is an ongoing debate about non-psychologists using “CBT” with people who are experiencing pain, and the other is a conversation with Chai Chuah, Director General of the Ministry of Health in New Zealand. Let me set the scene:

We know there are a lot of people in our communities who have relatively simple pain problems – a temporarily painful knee after walking up hills for the first time in ages, a painful back that “just happened” overnight, a rotator cuff problem that makes it difficult to get dressed or hang out washing. We know that there are some pretty simple things that will help in these situations: some reassurance that the awful thing the person is worried about isn’t likely to happen (no, you won’t end up in a wheelchair because of your back pain, and no it’s not cancer); some pain relief to help with sleeping more soundly and so we can keep doing things; and gradually returning to normal occupations including work even if the pain hasn’t completely gone.

We also know that approximately 8% of people with low back pain will ultimately end up contributing to the most enormous spend in healthcare that we know about – their pain continues, their distress increases, their disability is profound.

BUT before we put all our attention on to this small group of people, I think it’s worthwhile remembering that people in this group are also more likely to have other health conditions, they’re more likely to smoke, to be overweight, to have mental health problems; they also probably come from lower socioeconomic groups, groups including people from minority ethnicities, people who find it much harder to get work, to remain in education and perhaps even people who typically use healthcare more often than the people who get back on their feet more quickly. Data for these statements comes from the 2006 Health and Disability Survey in New Zealand and numerous studies by epidemiologists around the world  –  back pain is only one of a number of problems people in this group have to deal with. I’m also not saying everyone who gets back pain that lingers has all of these additional concerns – but there is a greater prevalence.

What does this mean?

Well, for a while I’ve been saying that people working in this area of health (musculoskeletal pain) seem to be developed a set of common skills. That is, there is more in common between me and Jason Silvernail, Mike Stewart, Paul Lagerman, Alison Sim, Lars Avemarie, Rajam Roose and many others around the world from many different health professions, than there is between me and a good chunk of people from my own profession of occupational therapy. And I don’t think I’m alone in noticing this. (ps please don’t be offended if I’ve left your name out – you KNOW I’m including you too!)

What’s common amongst us? The ability to see and work with complex, ambiguous, messy and multifactorial situations. Recognising that along with all of our individual professional skills, we also need to have

  • effective communication skills,
  • patient/person-centredness,
  • critical thinking,
  • generating a framework to work from,
  • identifying and solving the unique goals and situations the people we work with have,
  • ability to step beyond “this is my role” and into “what can be done to reduce this person’s distress and disability?”
  • And possibly the most important skill is being able to tolerate not knowing without freaking out.

That ongoing cycle of assess -> hypothesise -> test -> review -> reassess -> hypothesise -> test -> reassess ->  review

This is important because when people come to see us with a complex problem (and increasingly this seems to happen), the simple models break down. The tissue-based, the germ-based, the simple single-factor approaches do not fully explain what’s going on, and don’t provide adequate solutions.

What this means is we, ALL health professionals, will need to think about where our skills lie. Are we people who enjoy pumping through a big number of relatively simple problems? If so, that’s great! Your contribution is clear-cut, you know what you need to do, and you refine and practice your skill-set until you’re expert. I think this is awesome. Or, are we people who relish complex, who look at situations and see that it’s messy and complicated but don’t get put off? In this group we probably use skills for researching and planning, operationalising or getting things started, and we’re often the people who network furiously. We do this not because we’re social butterflies (me being the ultimate introvert), but because we know WE CAN’T DO THIS WORK ALONE!

What about clinical skills and scopes and boundaries?

You know, I am not entirely sure that anyone except the health professional him or herself cares who does what they do to help someone get better. It’s not whether a nurse or a speech language therapist or a podiatrist or a medical practitioner, it’s whether the person (or people) treats each person as unique, listens carefully, is honest and straightforward about what can and can’t be done, and knows when his or her skills are not sufficient so calls in the rest of a team for help. There is a time for working beyond your scope, and a time for calling in an expert – but to recognise when an expert is needed requires knowing enough about the problem to know that an expert might be helpful.

What this means in healthcare, I think, is adopting a framework that works across diagnosis and into the idea that people actively process what happens to them, they make their minds up about what’s needed, and they can learn to do things differently. I’d call this self-management, but I could equally call it a cognitive behavioural approach, or behaviour change, or motivational approaches or even patient-centred or person-centred care. The idea that people understand more than we often give credit, that they make sense from what happens to and around them, and that this knowledge influences what they do comes from a cognitive behavioural model of people, and fits beautifully within a biopsychosocial framework.

So, when I advocate getting skilled at cognitive behavioural skills, I could equally use the term “person-centred” or “self-management” – whatever the label, the contributions from each professional involved will ultimately influence the health experience and actions of the person we’re seeing.

Isn’t it time to be excited about opportunities to develop and to extend our skills? And if this doesn’t excite you, isn’t it great that there are a group of people who will respond to the simple and straightforward – but let’s not confuse the two situations.

 

Five critical skills for pain clinicians


I could be wrong: it might be seven or ten, but five is a good start. What do people working with those who have pain really need to know/do? What makes them effective? What keeps them positive in the face of what can be an extraordinarily demanding work?

  1. Effective listening skills, along with the ability to communicate that you’re listening. One of the most common complaints about health professionals made by people living with pain is that they don’t listen (Allegretti, Borkan, Reis & Griffiths, 2010; Stenberg, Fjellman-Wiklund & ahlgren, 2012).  While I’m sure there are some clinicians who deliberately protect themselves from engaging in a patient’s distress, I think there’s probably a more insidious version of this – some research shows that when patients report pain, physicians spend more time on technical tasks and less time helping the person actively participate in their own care (Bertakis, Azari & Callahan, 2003).  There’s also some research showing that when clinicians are trained in specific techniques for expressing empathy, patients believe they are more caring (Bonvicini, Perlin, Bylund, Carroll, Rouse & Goldstein, 2009). Physicians were trained to use “The 4 E’s” (engage, empathise, educate and enlist), with a particular focus on communicating that they had heard what was said. Techniques included rephrasing what a patient said; asking a question to elicit more detail; acknowledging or confirming that the person’s emotions are valid/legitimate; and expressing that he or she had experienced a similar feeling. Maybe it’s time for greater training in these skills for all clinicians working with those who have pain.
  2. Mindfulness skills to help deal with emotions during sessions. I hope I’m not just jumping on the mindfulness bandwagon, but I do think being able to be fully present but not caught up in judging or evaluating your own feelings is a critical skill to maintain openness in a clinical situation. A definition of mindfulness that I quite like is “a process of regulating attention in order to bring a quality of non-elaborative awareness to current experience and a quality of relating to one’s experience within an orientation of curiousity, experiential openness, and acceptance” (Bishop, Lau, Shapiro et al, 2004). Being mindful and open allows you to be there for your patient while also making space for yourself. There’s good evidence that mindfulness improves psychological health (Keng, Smoski, & Robins, 2011), and some studies also show that it improves your own communication skills and improves patient satisfaction (Beach, Roter, Kortuis, Epstein et al, 2013).
  3. Case formulation skills. These skills are about pulling your assessment information together in a coherent way so you can generate some testable hypotheses to explain why your patient is presenting in the way they are at this time. To me it’s a waste to conduct assessments and then fail to use that information when you’re developing your treatment plan. And it’s even more of a shame to fail to share that information with your patient. The thing is, there’s often little training given to how to generate a case formulation: it’s got to be based on broad theoretical knowledge fleshed out with the specific information you’ve gathered from your patient. This makes a formulation a unique ideographic set of hypotheses about your patient. I’ve written about case formulations here and here and here.
  4. Superb research reading skills. I don’t think it’s enough to say you’re evidence-based if you’re only using clinical guidelines. I think clinicians need to be critical readers of both qualitative and quantitative research. And I think it’s a crying shame that so much research is hidden behind paywalls. That’s one reason I write so often – I can access research and make it accessible. Of course I’d prefer it if everyone took to reading research, but the cost of doing so is atrocious! And we know that getting into print isn’t always easy, and with the current funding models in tertiary education institutes I think the range and depth of research being published is likely to stay a bit skinny. And until research is widely available for free (remember, authors write for free, reviewers review for free, and much research is published electronically, so where’s the money being spent?) I think it’s going to be tough for clinicians working in private practice. Having said that, even when I was a private practitioner, I always had a subscription to the local medical library – it’s a valid deductible expense.
  5. Effective social media skills. Really? Social media? isn’t that just for people who want to share their food pix? Uh, no. I’ve had the best CPD experiences via Twitter, Facebook, and blogging. Some of the most challenging and thought-provoking discussions occur every day on Twitter. Links to new and emerging research. Links to opinions that make you think. Apps that help you be there for your patients, even when you’re not. Ways to remain in touch with people working in your field from around the world. Is it really a healthcare skill? I think so. Social media allows me to connect directly with researchers, other educators, clinicians, people working in niche fields, people living with chronic pain (the very people I so want to know about). Social media gives people living with pain a voice that can be heard. It allows my niche field to be visible. It has an impact on the general public. If we want chronic pain to be taken seriously by policy developers, and if we want to influence how people living with chronic pain can be heard, then social media is, I think, the way forward. It’s not just me – here’s paper reviewing and with tutorials of applications in medicine and healthcare (Grajales, Sheps, Ho, Novak-Lauscher & Eysenbach, 2014).

This list isn’t exhaustive: what else do you see as critical skills for clinicians working with people who experience pain? Add your thoughts to the list below!

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

Beach, Mary Catherine, Roter, Debra, Korthuis, P. Todd, Epstein, Ronald M., Sharp, Victoria, Ratanawongsa, Neda, . . . Saha, Somnath. (2013). A Multicenter Study of Physician Mindfulness and Health Care Quality. The Annals of Family Medicine, 11(5), 421-428. doi: 10.1370/afm.1507

Bertakis, K, Azari, R, & Callahan, E. (2003). Patient Pain: Its Influence on Primary Care Physician-Patient Interaction. Family Medicine Journal, 35(2), 119-123.

Bishop, Scott R., Lau, Mark, Shapiro, Shauna, Carlson, Linda, Anderson, Nicole D., Carmody, James, . . . Devins, Gerald. (2004). Mindfulness: A proposed operational definition. Clinical Psychology: Science and Practice, 11(3), 230-241. doi: dx.doi.org/10.1093/clipsy.bph077

Bonvicini, K.A., Perlin, M.J., Bylund, C.L., Carroll, G., Rouse, R.A., & Goldstein, M.G. (2009). Impact of communication training on physician expression of empathy in patient encounters. Patient Education and Counseling, 75(1), 3-10. doi: dx.doi.org/10.1016/j.pec.2008.09.007

Grajales, Francisco Jose, III, Sheps, Samuel, Ho, Kendall, Novak-Lauscher, Helen, & Eysenbach, Gunther. (2014). Social media: A review and tutorial of applications in medicine and health care. Journal of Medical Internet Research, 16(2), 452-474.

Keng, Shian-Ling, Smoski, Moria J., & Robins, Clive J. (2011). Effects of mindfulness on psychological health: A review of empirical studies. Clinical Psychology Review, 31(6), 1041-1056.

Stenberg, G., Fjellman-Wiklund, A., & Ahlgren, C. (2012). “Getting confirmation”: gender in expectations and experiences of healthcare for neck or back patients. J Rehabil Med, 44(2), 163-171. doi: 10.2340/16501977-0912

Talking past each other: Secret conversations, hidden realities


Take a look at what is written about pain and people living with pain. Look at it with a critical eye. What do you see?

We have descriptions of battling, winning, losing, overcoming, finding a way, getting through, controlling, removing, reducing. Pain is the invader, the alien, something against which we must prevail. And we may prevail using the tools of modern science: we diagnose, we identify, we label and we explain. We treat, we medicate, we use novel movements, graded activity, we avoid sensitising a sensitised nervous system.

The results of this discourse are that when pain does not reduce, is not overcome, cannot be controlled, does not respond to treatment or explanation, we as treatment providers have lost.

Cognitive dissonance is the mental stress or discomfort experienced by an individual who holds two or more contradictory beliefs, ideas, or values. When faced with the situation in which pain “should” have reduced but hasn’t, treatment providers explain away this uncomfortable fact by suggesting that the person hasn’t been following instructions, the treatment wasn’t carried out properly or wasn’t the right treatment, the real cause wasn’t found, the explanation wasn’t thorough enough, the person wasn’t convinced, the treatment wasn’t carried out for long enough, or even that there was a change but the person didn’t recognise it, didn’t make the most of it, expected more.

How often do people living with pain fudge the outcome to avoid displeasing the person treating them? Fail to let the clinician know that yes, there’s still an impact on life despite pain being explained or managed?

Words, or discourse, are as John Shotter put it, “prostheses for moving about through our world’s physicality” (Shotter, 1993). By conversing, clinicians are given a glimpse into a client’s world, but at the same time, clinicians shape that conversation, guiding and leading it in directions that suit the clinician’s purpose. The words used by the client are translated into technical jargon, one prosthesis replaced with another, more “correct” one. Much of the “what it is like” to live with pain is never spoken of, perhaps never verbalised and never made tangible.

Let’s examine some of the expectations we as clinicians might hold about pain (taken from Strong, 1999):

  1. Pain is personal and individual. This means that outward demonstrations of pain are discouraged – those who do are labelled negatively and called “distressed”, “disabled”, their behaviour called “maladaptive”, and in some cases even called “histrionic”, “malingering”, or simply “wallowing”.
  2. Pain is valid only if “we” all agree on it. Although this discourse is slowly changing there’s a hint still present that if the person doesn’t “recover” the way they’re expected to, there’s something wrong with them – it’s those “psychosocial factors”, not the real pain mechanisms.
  3. Suffering, or the loss of self, is some sort of moral or physical failing of the person.  They haven’t “accepted” it, they have ongoing litigation or compensation, they must be getting secondary gain.

I am guilty of these kinds of attitudes. I have been guilty of projecting my own frustration at people who haven’t responded the way I think they ought to. I’ve held beliefs that people should get better because I’ve conducted good therapy and if they haven’t made changes it can’t possibly be my fault, it must be “them”.

In a conversation over the weekend I was reminded that despite generally being someone who deals with my pain (and depression) reasonably well, there is a whole hidden conversation that I rarely engage in, and in failing to acknowledge that part of the “what it is like” to live with pain I’ve missed being compassionate towards myself – and probably others.  That conversation for me was about the never-ending presence of pain at all times somewhere in my body. There is never a time when I’m not sore somewhere. I ache in my lower back, I burn between my shoulder blades, my neck is tight, my MCPs feel hot and bruised, my toes are tingling and sensitive.  I have heaviness behind my eyes. My belly hurts.

The point behind posting this is not that I seek comfort or support or anything from anyone else, but simply to acknowledge that although I know my pain is meaningless, it doesn’t reflect harm or damage and doesn’t pose a threat – it is still present. And in being present, in order to do what is good and enriching and valuable, I must use energy to put that pain experience to one side. I need to accommodate that pain, and take account of it at all times.  And that is tiring. It can be more than tiring, it can be exhausting.

In his article, Strong describes a practice that I guess today would be called mindfulness. He describes “listening for, and working within, the language of visceral experience” to help people transform the quality from one of rejection or judgement, into an “authenticating or welcoming stance”.  He suggests beginning by actively focusing in a relaxed manner on the area which most feels pained, using breathing and concentration. Using this focusing to explore the sensory quality of that area anew – a gentle curiosity. To stay “with” the area – and if working with a therapist, the therapist must “stay with” their client by using “clean language” or the client’s actual words to reflect that the experience has been “authenticated”, or verified by co-construction.

Hidden or secret experiences continue to have an impact although they are rarely discussed. While my experience of pain is certainly personal, the impact it has on me and what I do (and even on what I allow myself to acknowledge) is public. Or it can be if I allow it to be so. By hiding my experience from others I show a public face of energy and effervescence that isn’t complete. It’s not authentic. It suggests to others that I may not have this experience. I wonder how often I/we as clinicians make our therapeutic space safe and nonjudgmental enough for the people we work with to get in touch with those aspects of “what it is like” to live with pain that are hidden, are buried beneath the facade of winning, overcoming, battling, being explained away.

And here’s a final kicker: having been open to being vulnerable, how many of you find it hard to read this honesty? What’s your initial response? Do you want to fix it? Find a solution? Offer me something? Do something for me, to me? What would it be like to simply be present and experience the “what it is like” to be utterly fatigued by ever-present pain? Would you be willing to stay with that experience? And what would it mean to you? Your response will, if you let it, tell you a secret.

 

Shotter, J. (1993). The cultural politics of everyday understanding. London: Basil Blackwell.

Strong, Tom. (1999). Macro- and micro-conversation in conspiring with chronic pain. Journal of Systemic Therapies, 18(3), 37-50.

Some people are ready to change and others are not – James Gordon


The full quote is actually:

“It’s not that some people have willpower and some don’t… It’s that some people are ready to change and others are not.”
― James Gordon

Oh how true is that. And any health professional will tell you that there’s just no point pushing for change when the person isn’t ready for it. So often we encounter people who are unhappy with their lot in life, struggling with this and that, and yet they just don’t make changes that seemingly sit right in front of their faces. It’s SO frustrating!

Or, in my case, it used to be so frustrating – because a few years ago I discovered an approach that revolutionised my practice and made me take another look at my expectations and beliefs about motivation. More about that shortly.

This post arose out of the recent publication of a paper by Sarah Hardcastle and colleagues from the Health Psychology and Behavioural Medicine Research Group at Curtin University in Perth. “Motivating the unmotivated: How can health behavior be changed in those unwilling to change?”

This paper outlines several theoretical approaches that have given health professionals some powerful tools to use when working with people who could change but haven’t.  In order to help people in this space, the authors argue that we really need to understand why it is they don’t have “motivation”. So, what is motivation? Simply put, it’s the desire to do things. And for many of us, we think of it as a “thing” that you either have, or you haven’t. But motivation is a tricky thing – ever been disinclined to go visit someone who’s invited you to dinner, dragged yourself there and then had a fantastic time? Or had one of those ideas that flash through your mind, get all excited about it … but never get around to it? Motivation is a fluid thing and doesn’t always equate to action!

Amotivation, or lacking in motivation, is quite specific to a particular action or set of actions. It may be because a person doesn’t think he or she will be successful if they try. Why bother if you know you’re going to fail? This is about having low self-efficacy, or low confidence and thinking it’s not possible to obtain skills or capabilities to be successful.

Amotivation can also occur if a person thinks it’s going to take more out of them than the rewards from doing it. The costs outweigh the benefits. And it can occur when the effort needed to overcome barriers or to push through feels too much, or the change just doesn’t seem worth it because it’s not that big a deal.

Here’s where I come back to my revolution a few years ago – I found that by using motivational interviewing, I was able to shift the responsibility for making a decision to change back to the person (instead of trying to “make it” happen), but at the same time, recognising the reasons for the person staying where they were. To me, it boils down to respecting that people don’t do dumb stuff for fun. There’s usually very good reasons for them having made a decision, either to make a change, or NOT to make a change. What they’re currently doing works, at least to a certain extent.

Using motivational interviewing, the first and most important thing to learn is to respect the person and take the time to understand the good things they recognise about their current situation. Because there are always some good things about being stuck – it’s easier, for one, than making a change. It’s familiar. It’s worked once or twice. People know what to expect. Change always means disruption somewhere, and that’s not comfortable or easy.

If we look at the reasons I outlined for NOT making a change, and work through them, I think (and so do the authors of this paper!) that there are some things we can do to make change less difficult, and in so doing, build momentum for change.

  1. Lack of self-efficacy – if someone doesn’t think he or she will succeed, why would they even begin? Personally I think this is a big part of “lack of motivation for returning to work” which is something I’ve seen written in way too many clinical reports. If someone doesn’t think they’ll be successful, how could we make the change less challenging? Increase support? Make the steps smaller? Look at other things the person has been successful in? Find out how they’ve made changes successfully in the past and use that?
  2. Not valued highly – or, something else is more valued than this right now. Respecting that there is a time and place for things to be done, and that other things in life can over-ride making changes is both authentic and human. It means that this change isn’t yet important enough – so, how do you build importance? To me, importance is about values and what a person wants in his or her life. There are often discrepancies between what we want and what we’re doing, and sometimes this is because it’s too difficult or messy to think about it. I think part of our job as health professionals of any discipline is to help people consider things that are tough. To reflect on the short and long-term outcomes of carrying on in status quo, and the same if we made a successful change. Things we do because they’re more comfortable in the short-term can be incompatible with what we really want long-term. It’s part of my job to help people think about this. NOT, I hasten to add, to “make” them decide in any particular direction. That’s not my job, I’m there to help people think about how their actions today might affect the future, and let them make their own decisions. At the same time, I can choose to reflect the reality of the long-term effects of today’s actions. That’s being responsible as a health professional.
  3. Feeling the end result isn’t worth it, or that there are too many things in the way – again, to me this feels a lot like addressing self-efficacy. If there are things in the way, or it feels too hard, then part of my job is to help the person find a way that is within their capabilities, and to grab a vision of what it might feel like to have successfully achieved that end result. Asking the person to “look forward” to a few months, years down the track – what would it look like if they made a change that worked? How would this affect what’s important to you? If you decided not to make a change, what would things be like? Would that be what you want?
  4. Habits making it hard to think about changing – It’s easy to over-indulge on chocolate when there’s one of those “treat boxes” in the workplace. It’s easy to go home and stay at home rather than go for a run if you don’t have running shoes and a change of clothes in your car. Environmental triggers where it’s easier NOT to do a healthy thing make it difficult for someone who’s just not even thought about making a change. Employers, healthcare facilities and both local and central government can make it harder for people to do unhealthy things simply by structuring when and where people can access them. So the carpark a little further from the workplace can make it easier to get more exercise each day, banning smoking from healthcare facility grounds makes it harder to get a smoke break, having healthy options in the “treat box” can make it easier to choose something healthy. This set of changes can feel a bit “nanny state”, but they’re effective and useful when it’s those simple little changes that make the difference between living well, or not.

Motivating for health behaviour change starts with building confidence and importance. Maintaining behaviour change involves a lot more – but that’s for another post. In the meantime, I think Atoine de Saint-Exupery had it right when he said:

“Quand tu veux construire un bateau, ne commence pas par rassembler du bois, couper des planches et distribuer du travail, mais reveille au sein des hommes le desir de la mer grande et large.

If you want to build a ship, don’t drum up people together to collect wood and don’t assign them tasks and work, but rather teach them to long for the endless immensity of the sea.” Antoine de Saint-Exupery

Hardcastle, S.J., Hancox, J., Hattar, A., Maxwell-Smith, C., Thøgersen-Ntoumani, C., & Hagger, M.S. (2015). Motivating the unmotivated: How can health behavior be changed in those unwilling to change? Frontiers in Psychology, 6, 835. doi: 10.3389/fpsyg.2015.00835

“Sleep is my drug, my bed is the dealer, and my alarm clock the police.”


Sleep.  The “little death”, the “golden chain that binds health and our bodies together”, “sleep is a hint of lovely oblivion”.

There’s no doubt that having pain and sleeping well just don’t go together – having trouble with sleep is a common problem for people living with pain.  One study reports that over a period of 26 months, 67% of people living with chronic low back pain experienced poor sleep (Axen, 2015). More than this, in the same study one single day of bothersome pain increased the risk of reporting 2 to 7 nights with disturbed sleep by two, and people with chronic low back pain were more likely to report poor sleep than those with acute low back pain.

In another study, (Harrison, Wilson & Munafo, 2015) teenagers from a large cohort study in the UK were surveyed to identify the presence of sleep problems, mood problems and pain problems. 21% of the population reported trouble with sleep, 5.5% reported pain problems, and 2.8% experienced both pain and sleep problems.

And in yet another study, participants with fibromyalgia had significantly shorter and more frequent wake bouts than those with primary insomnia, and the researchers argue that sleep disruption in fibromyalgia does not lead to prolonged periods of wakefulness, but seems to be a disorder of the sleep system whereby internal or external events repeatedly disturb and fragment sleep, and suggest the resulting increased frequency of awakenings may be, at least in part, due to pain, as studies have shown that reducing pain also improves sleep.

These researchers also considered that there is a relatively intact homeostatic drive in participants with fibromyalgia that causes them to quickly return to sleep after an awakening. This is evidenced by shorter initial sleep latency (LPS) and increased slow wave sleep, in addition to shorter duration of wake bouts compared with individuals with primary insomnia (Roth, Brown, Pitman, Roehrs & Resnick, 2015).
People who experience chronic pain can often experience depression, while those who have depression commonly experience sleep disturbance. There are suggestions that common neurobiological pathways exist between all three states.  Atrophy of the hippocampus and increased limbic area activation has been reported across all three conditions, while increased limbic activation occurs in all three conditions as well. Neurochemical changes are also found in all three conditions: HPA-axis hyperactivity has been found, with subsequent alteration to glucocorticoid receptor downregulation, monoaminergic neurons are inhibited as a result of glucocorticoid-induced monoamine depletion, thus reducing inhibitory drive and therefore increasing pain.
Slow wave sleep has been found to inhibit the HPA axis and cortisol secretion, with wakefulness associated with increased cortisol which could lead to increased HPA activation and subsequent elevation of pain (Boakye, Olechowski, Rashiq, Verrier, Kerr, Witmans, Baker, Joyce and Dick, 2015).
Essentially it seems clear that there are neurobiological factors that are implicated in chronic pain, depression and poor sleep.
The importance of this finding shouldn’t be under-estimated. In qualitative studies, participants report that one of the most challenging aspects of dealing with chronic pain is handling fatigue and sleep-related problems (Turk, Dworkin, Revicki, Harding et al, 2008). Pain not only affects sleep quality, but because it intrudes on cognitive processing, there is perceived effort involved in just handling day-to-day situations.
What to do about it…
Well, here’s the thing. Most of the ways GP’s manage sleep problems is through short-term prescriptions of hypnotics such as zopiclone and occasionally benzodiazepines. While there are some useful short-term effects from these drugs, chronic pain is not a short-term problem. Sleep disturbance associated with chronic pain is thus less likely to be helped by simply increasing the length of prescription – these drugs are not intended to be taken long-term. Other medications are used primarily for their pain reducing effects (such as gabapentin and the tricyclic antidepressants), but happily, also possess sedative effects.  These can be taken long-term – but may not work for everyone.
Alternatives include using cognitive behavioural therapy for insomnia. Actually, there are two alternatives – CBTi and sleep restriction, and in some cases, both together.
CBTi is a brief form of cognitive behavioural therapy that has been shown to be highly effective, and focuses on the thoughts and beliefs people hold about sleep, the habits people have associated with sleeping, and associations between habits, thoughts and sleep onset.  Sleep restriction, on the other hand, reduces the amount of time people are actually in bed overall, with the aim to consolidate sleep, and reduce the amount of time spent awake while in bed. Sleep restriction also influences the sleep architecture, so that people can descend into deep sleep more quickly, while reducing the amount of time in REM sleep and lighter levels of sleep.
A final alternative is to use mindfulness to help people become aware of their thoughts and habits about sleep, but instead of challenging or refuting them, learning to attend to them with curiosity and kindness, while at the same time reducing the amount of time awake while in bed.
As a long-time insomniac (now recovered!), I am well familiar with being awake when all else is silent, and on the troubles of trying to get off to sleep while my bed partner snoozes. I also know how hard it is to get back off to sleep after waking in the middle of the night.
Here’s what I did:
  1. Used deep relaxation hypnosis to help establish the association between being relaxed and being in bed. I used this every night for ages, then I realised that I could do the hypnosis “in my head” rather than having someone else’s voice do it for me.
  2. I got out of bed if I hadn’t been to sleep in about 30 minutes. Especially during the middle of the night! Not easy, but worthwhile so I didn’t lie there trying hard not to fidget and wake my partner. I found that if I tried to stay in bed I’d end up being so aware of my fidgeting and so strung out by trying NOT to fidget that I’d be wide awake and stressed. Not the best way to sleep!
  3. Keeping the lights down low, and reading a book I’d already read was the next step once I’d got out of bed. That way I didn’t need to read every word, and it didn’t matter if I snoozed a little.
  4. After about 30 minutes or so, I’d slide back into bed with my mind full of the story rather than being frazzled by not sleeping. And I’d return to my relaxation and breathing and gradually slip off to sleep.
  5. More recently I’ve kicked the mental hypnosis/relaxation habit, and I now go to bed and simply roll over and slow my breathing and fall asleep. Learning to do this without using the hypnosis has been fabulous so I no longer need to worry about being awake at 3.00 in the morning! If I do wake, I head to the toilet, do my business, then slide back into bed and roll over and slow my breathing.

What I’ve learned from this is that the main habit I needed to learn was how to put myself to sleep. I also learned to remind myself that the occasional night with poor sleep is OK, I can handle. And if my sleep really turns to custard I have the skills to manage it myself.

I can’t stop the fact that fibromyalgia means there are some changes to the way my brain processes information, and that this means I’m likely to have poorer sleep than many other people. What I can change is how much I allow that to affect me. And by learning how to go off to sleep by myself, without the external aids, has meant I actually do fall asleep more quickly and don’t feel the effects of disrupted sleep to the same extent as I used to.

 

 

When medication side effects get in the way of living life


There are very few people living with chronic pain who gleefully swallow a handful of pills and skip happily off for the day feeling chipper and bright as a button. For the most part, people living with chronic pain don’t seem to enjoy the need to take medications – I’ve heard some say they’re worried about “not being able to tell whether I’m doing damage” when they can’t feel their pain, others say they don’t think medications are very helpful, while still others complain about rattling when they walk. But by far the biggest complaint is the medications for chronic pain have unpleasant side effects – side effects so bad that for some people, it’s just not worth taking the pills at all.

Surprisingly, although there are many studies looking at the side effects of medications, and why they occur, the effect of side effects on doing everyday activities has seldom been examined. Thankfully a group of researchers from Harvard and Johns Hopkins have taken on this task, and we now have some information about just how much side effects can get in the way of life.

What side effects do people experience?

Nausea, dizziness, headaches, constipation, weakness, cognitive fogginess, excessive sleepiness, skin itchiness and rashes, muscle twitching – you get the drift!

Why do they happen?

Many medications for pain, and particularly medications for chronic pain, exert their influence on the central nervous system – where the receptors for neurochemicals important in modulating our experience of pain are found. It would be fabulous if there were some separate receptors that only dealt with “unhelpful” pain that could be targeted, but because pain is an adaptive response designed to protect us – and because in evolutionary terms experiencing pain is crucial to our survival and has been present from early on in our evolutionary development – receptors targeted by many pain medications are found throughout the body. And particularly in the brain – hence the fogginess, sleepiness, and headaches.

What does this mean?

When prescribing medications for chronic pain, clinicians and their patients ultimately go through a process of empirical study. What this means is that because we don’t know which type of medication is most likely to help an individual, each one needs to be tried out. And the trial and error process involves establishing the balance between helpful effects – yes, pain reduction, perhaps some help with sleep – and unhelpful effects – those side effects. The process of deciding which particular combination of medications to take is absolutely personal – only the person with pain can possibly determine whether they find the balance of helpful vs unhelpful effects tolerable.

What about this study?

In this study, Martel, Finan, Dolman and colleagues (2015) sampled a group of 111 people living with chronic musculoskeletal pain. The participants were asked to report once a month, for six months, on their medication use, side effects, and pain and activity levels.  Interestingly, the group selected had to have been prescribed opioids because the larger study of which this one was a small part, was designed to establish ways to improve adherence to medication taking. In addition, this group of people were considered to be at risk of prescription opioid misuse based on an assessment for this problem, but those with a current or past substance abuse problem within the past 12 months. What this means is that while the study has some interesting findings, they will not be representative of all people living with chronic pain, and results need to be interpreted in this light.

OK, OK, I’ll get on with it!

The findings

There were no differences between men and women in terms of pain intensity, mood or pain-related activity interference but women were more likely to describe side effects due to medication. Reports of side effects were no different between those taking opioid medications as well as other pain medications such as antidepressants, anticonvulsants or NSAIDs.

Now for some expected findings: people reporting greater pain-related interference were less likely to be employed, while changes in pain intensity were related to pain-related interference, and similarly, changes in mood were also associated with greater pain related interference.

After some statistical magic (multilevel modeling is horrendously complex!), these researchers examined the unique contribution of medication side effects on pain-related activity interference. What they found was that side effects contributed a unique amount to interference even after controlling for gender, pain intensity and negative mood, and even taking into account individual differences between people.

Now this is important. Medications are prescribed for pain for two reasons: to reduce pain (obviously) and it’s assumed that because pain is then lower, pain-related interference will also be lower. In other words, people will feel less pain and do more things they want to do. What this study suggests is that the burden of side effects from medications can actually ADD to the burden of disability experienced by people living with pain. Now, one way to deal with this is to reduce the number of medications a person takes. That would take care of the side effect burden – but it would also increase the pain. Both distress and disability may then increase. An alternative is to treat the side effects with something else – a bit like taking something to stop constipation when being prescribed opioids. But that in itself can create problems – because, as many people I’ve talked to mention, they really don’t want to rattle like a pill bottle from all the medications they have to swallow.

I think there are two more alternatives. One is to look at the timing of medication taking. I’ve seen many people prescribed gabapentin three times a day – but gabapentin is sedating, and people complain of the effects on driving and on concentrating at work. An alternative, and one that I’ve seen carried out very successfully for years at Burwood Pain Management Centre in Christchurch, NZ, is prescribing the same dose of gabapentin, but taking it once a day at night. A good night’s sleep is had, and the hangover effect during the day is minimised. But this requires a change in how the doctor prescribes – and some confidence to fiddle about with the timing of the dose. It also suggests that the person living with pain, his or her doctor and probably the pharmacist need to work together to develop a plan that maximises the effectiveness of medication administration.

The second is to look at reducing reliance on medication as the primary form of coping strategy for chronic pain. This solution is a vexed one. Many people living with chronic pain are afraid to reduce their use of medication. Many doctors are unaware of alternative ways of coping even though it’s evident that as many as three people in four will not obtain any benefit from medication.  Worse still, many communities have few treatment providers available to help people develop nonpharmacological ways of living well with pain. I think that’s a tragedy and I think it’s time that changed.
Martel MO, Finan PH, Dolman AJ, Subramanian S, Edwards RR, Wasan AD, & Jamison RN (2015). Self-reports of medication side effects and pain-related activity interference in patients with chronic pain: a longitudinal cohort study. Pain, 156 (6), 1092-100 PMID: 25782367