I don’t have the answer to this conundrum, so my post this morning is a piece of thinking out loud… For most of my pain management career it’s been a policy of mine not to try working with people to develop self management of their pain while they’re continuing to get ‘on-demand’ pain reduction treatment (primarily injections and infusions). The main reason for this has been the contrary ends of the two approaches.
Pain reduction through injections/infusions (from now on referred to as procedures) is often given to people to see whether their pain will remain at lower levels, and for the patient to use this reduced pain to increase function. Often people are given ‘reactivation’ during this time, usually from a physiotherapist, consisting of exercises and mobilisations and it’s hoped the new function will remain and maybe even maintain the lower level of pain.
People who do obtain pain relief with a procedure are then often able to obtain more procedures, maybe every three months or so, or as their pain returns. The doctors providing this approach suggest that by doing so they help people remain in work, and managing well. These doctors also suggest that this can go on as long as necessary, and see this approach as similar to taking a regular pain medication.
Self management, at least the way I’ve been practicing, involves developing strategies that enable improved management of flare-ups, establishing goals for the future and working towards them, becoming aware of the interaction between thoughts and feelings and behaviour, and developing ‘portable’ skills to reduce physiological wind-up, maintain function and reduce distress. This is so that people can manage the inevitable fluctuations in pain intensity, and start living as people rather than patients.
Proponents of self management (like me) suggest that by using self management strategies to live a ‘well’ life, people are enabled, their self efficacy is increased, and they change from focusing on what they cannot do to what they can do.
Self management, especially the approach that looks beyond just the pain and into how to manage psychosocial factors that have been so often found to influence distress and disability, has a good deal of support for it, and there’s no doubt that it can help people look at their life goals, their social situation, and things like communication, mood management, and activity patterns. This seems really important to me, because in the face of chronic pain, these factors have such an influence over whether life has quality or not.
Pain reduction especially using procedures poses some risks IMHO. There are always risks involved in invasive interventions, and every medication has both the effects we’re looking for – and those we’re not. But the risks I worry about are these: every time a person comes in for a procedure, he or she is immediately returned to being ‘a patient’.
Patients have a very special social role. Their job is to be ‘patient’, to follow the advice of the health professional, to adhere or comply, to report on the symptoms of ill health, to focus on ‘getting better’ but during this process to have special allowances made by others – they can stop doing certain activities, they can be passive in certain settings, they can describe their problems and symptoms, and they are expected to do so or other people around them wonder why.
It doesn’t seem such a huge risk I suppose. But for me it contrasts hugely with living ‘well’ where the focus is on what enriches life, on accepting responsibilities and fulfilling life roles, on having fun and on challenging oneself, on achieving potential and developing fully. Instead, the focus is on symptoms and whether they’re returning, on doing what ‘the doctor says’, on engaging with the health system, on difficulties around health – in between periods of living relatively ‘well’.
Now before I find myself blacklisted, this is not an ‘all or nothing’ statement. It is OK to sometimes loathe having pain, to want to have some time off from responsibilities, and to have an opportunity to complain about symptoms. I know. I do it myself! And everyone alive has had times where the duvet beckons and it would be much nicer to stay in the jimjams for the day.
I guess what bothers me about maintaining an intermittent pain reduction focus is that often the alternative of self management isn’t considered. It’s like the Holy Grail of health care is to take the pain away or life cannot be good. I dispute this!
The thing is, pain reduction doesn’t address the ‘other’ problems that research has so often found associated with chronic pain and disability. These problems are things like a hateful job, family strain, low mood and difficulty regulating or dealing with unpleasant emotions, alcohol and other drug use, conflict with the neighbours, unemployment – the list goes on.
Pain reduction simply reduces pain. And without developing skills to manage those factors I’ve listed above, I don’t think living ‘well’ is possible.
Alongside this is the very common problem where procedures are often of gradually decreasing effectiveness. So the first one or two procedures are fabulous, but the second might last for two months instead of three, the third might last for one month – and so on. Does anyone recognise the distress that people feel when their hopes are built up, only to be dashed by ‘oh no, here’s the pain again’?
Why not do self management alongside pain reduction?
My experience suggests that while some aspects of self management can be carried out alongside procedures, it’s very hard for people to get confident about their skills during hard times if the most salient ‘hard time’ is about pain exacerbation. When it’s easy to contact a doctor and get another procedure, it makes little sense to use those coping strategies and wait out a flare-up. And when pain has been lower for a while, any increase in pain can feel so much more difficult to tolerate than it was before pain reduction could be achieved.
This doesn’t mean things like goal setting, developing effective communication strategies, looking at thoughts and emotions and behaviours, working to become more confident to work or set boundaries with families and so on can’t be developed alongside procedures, but in the initial flush of success from reduced pain, these things don’t seem to be as important – and it’s hard to work on something that doesn’t seem important at the time.
I don’t have a straight-forward answer to this. And I haven’t really found all that much in the literature to help. It does seem to be a general principle that self management of pain is provided after pain reduction efforts have been completed. But it breaks my heart to find that people may have waited many years to have the chance to learn self management just because a procedure has been useful. What are your thoughts?