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Concurrent pain reduction & self management?


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?

7 comments

  1. It’s a little like Capello trying to accommodate Gerrard and Lampard in the England midfield. On paper they both have their strengths and in isolation can produce outstanding results, yet combine the two and they seem to inhibit or detract from each other.

    I can certainly relate to the scenario where patients remain focussed on their pain reducing fix. An interesting aspect of that is often their interpretation of what that means. Recently I listened to one man explain exactly what the doctors future plans entailed having had moderate success in controlling his LBP and radiating leg pain. A different injection and then, if no luck, off to the neurosurgeon. The doctor in question denies any such plans, acknowledges the limitations of intervention and is at a loss to explain how the patient could come to this conclusion. Sound familiar?

    I wonder if the difficulties lie in the patients expectations and beliefs. Regardless of what they are told, they see ‘specialist’, talk about ‘pain reduction’ and hear – “someone is going to fix me”. I know from time to time our Pain Management service encourages a non-medical team member to be present at these sessions simply to act as a kind of translator. Perhaps this is how doctors become more drawn in to an IDT model – support them with their difficult discharges (those not getting better) and define more clearly the implications of their trials and findings.

    As a physio I am also the recipient of a number of doctors requesting input for their patients post-procedure. As a dyed-in-the-wool pain management advocate I always feel like i handle these requests too negatively. I’m starting to think that the best approach is probably to ‘change hats’, return to the biomedical model and focus on the patients physical rehabilitation – the difficulty is determining when to share information on a biopsychosocial model, draw in other team members and start to define and address those psychosocial factors.

    Perhaps the Holy Grail (if that is what we are seeking) should not be cure, but matching the right patient to the right intervention as quickly as possible (rather than trial and error). I think its the time wasted (and hope dashed) over repeated procedures that don’t help the person that are particularly frustrating.

    So to complete my simile, you pick your team and tactics to reflect the opposition!

    Cheers
    P

    1. Um…now who are they? I do recognise the story of the chap seemingly ‘mistaken’ about the next step for him. We could contribute to this inadvertently by talking about pain management when maybe we’re talking about ‘life management’ instead? Do we actually change the pain at all? I know I hardly talk about pain when I’m working with people unless they want to know more of the neurobiology of it.
      I wonder whether the shift to a biomedical approach in those people who are getting procedures is needed: what about helping people manage the functional and emotional aspects of recovery, leaving room for self management once they decide they need it, a bit like the motivational interviewing approach – working to leave the door open for self management by asking people to consider the good and not so good of each approach. I worry about people who do need psychosocial and functional input but who don’t get it in time because of the delay while they’re receiving jabs.
      Another question that occurs to me too – do the people who get ongoing procedures ‘look like’ those that move into self management? What are the characteristics of those people? My hunch is that there are several things we’d find:
      1. high functional level, possibly still working, not as deactivated as those who proceed straight to self management – my thoughts are that doctors are less keen to do procedures on those who are quite deactivated, but may fail to identify those who ‘boom and bust’ or have pain contingent activity. This group of patients are possibly the ones who ‘push’ through the pain.
      2. high distress during pain flare-ups, but otherwise present ‘well’ and are not depressed or have alcohol/drug or similar issues. The distress factor may be what elicits from the doctor the belief that reducing pain is the only thing that needs to happen.
      3. maybe only one or two distinct areas of pain, so the pain is not as widespread and appears less overwhelming to the doctor. This would mean the doctor would perceive the pain as more amenable to specific injection therapy.

      Then we come to the other characteristics – patients who are selected for injections might have a greater external locus of control, may be more passive in their coping generally (grit your teeth and bear it, then grab a pill and push through), and I think become trained through the procedure to be more aware of pain intensity and then have treatment seeking behaviour strongly reinforced by the apparent success of the injection. These patients may have complex work and social issues, but from the point of view of the doctor, these are not especially important in terms of whether a procedure is useful or not – because this aspect of the biopsychosocial model doesn’t enter into the equation. I think the docs belief is that ‘if the pain is gone, the person will get on just fine’. Again, my hunch is that they don’t.

      So maybe there are two pathways for pain management – the self management track which is, from my reading anyway, the more useful approach in the long term; and the pain management track which might involve reliance on procedures fairly regularly but NEEDS to include (and doesn’t where I work) both functional (OT/PT) input AND psychosocial input to address things like working style (boom or bust), thoughts and beliefs, managing the return to work situation and so on. Not as desirable as self management, but at least this will mean the functional limitations that are currently NOT being addressed could be included in the plan. Dreaming maybe? Not sure – will continue to explore!

  2. I agree with your musings and enjoyed the read. I recognize what you describe in patients and in the two approaches. I frequently hear patients report the decreasing benefits of procedures. I often talk of perpetuating factors of posture, body mechanics and poor pacing to patients. I think when people rely on the quick fix of a procedure they may neglect self care. I think the waiting and putting off learning self care ( possibly because it does not seem worth the effort in comparision) compared to relying on procedures often allows underlying conditions to become established. ( The analogy of car maintenance comes to mind )

    I believe patients are trying to live a comfortable life of value, although their condition and ability deteriorates along with their quality of life until the self care becomes worth the effort. Like they are squeezing the last value out of their ever declining bodies. When procedures stop helping sufficiently, then they are ready to put in more effort. ( Although I think here the saying ‘a stitch in time saves nine’ is appropriate. And this does not apply to all and certainly not as a conscious choice for many )

    We do occasionally use a combined approach. Though prefer to use injections as a last effort to release stubborn areas that do not respond to self care and aggressive physical medicine and then to one key area. (passive and active stretching and strengthening. Multidisciplinary setting, docs, PT, OT, MT, psychology, nursing, vocational counselors. )

    Humans tend to love a quick fix. But also quality of life. Helping to educate and find the balance ( pushing during treatment so they can live the good effects and trust the effort is worth it ) that the patient will maintain. empowers people to avoid contributing factors and manage flare ups as the occasional bump on the journey of life.

    I was so pleased recently when I had an exchange with a former patient, a young woman who graduated our program over a year ago (we also invite each one at their graduation to no longer think of themselves as patients.) at the end of our conversation and only when I asked about her pain, she replied off handedly and almost as a background thought, ‘Oh, I am great. I know what to do to stay out of trouble and how to get out when it starts. I do everything I want.’ Before coming to us she was ready to give up her career, did not even want to take the follow up call from us about her inquiry and had little hope for the basics in life, a relationship, a career she loved, enjoying time with her very strong social and family ties.

    I love when it all comes together. It is simple in theory, but it takes diligence in application. Seemingly minor pieces of the maintenance puzzle can not be taken for granted and left out. Slowly or quickly lack of maintenance catches up with us. ( thinking now of the phrase the chain is only as strong as its weakest link )

    Do you have patients work ‘through the pain as long as they can maintain good form?’

    I am sure my thoughts are not as well expressed, I apologize for any unclear expression. Thank you for your stimulating posts.

    1. I agree with the ‘chain is only as strong as its weakest link’ analogy, that’s so true. And to talk with someone who has ‘made it’ through is so rewarding, it makes it all worth while. I think it’s so difficult because the things we’re trying to work on are longstanding habits and attitudes that so few people have had to think about before their pain began, and that process of acceptance is such a difficult thing with no single way to get there.
      Re working through the pain – I think it’s more a case of allowing room for the pain to be present while doing things that are important. But I do find it hard to put into words what I mean by this – it’s a softening and gentling of the usual reaction which is to try to resist having the pain. It’s certainly something that the acceptance and commitment approach does in an experiential way that is really hard to describe!
      Thanks for taking the time to share your thoughts, it’s always a privilege to know people are reading my rants!

  3. This is an awesome post. I think I commented earlier on that, and this explains so much. I think Lia is very right that someone needs to get to the point when pain management is worth it. I certainly fall in the category of “high functional” patient, though the pain came close to derailing me several times. From my point of view, all approaches have costs, including pain management. For example, the cost of painkillers is side effects, both long-term, and short-term issues (like sleepiness/dizziness). But pacing has costs as well. Early on in a program the doctor suggested taking breaks every half hour when sitting on the computer. The truth is, it helps, but it interferes with my job quite a bit, so if I do it consistently in a day, I am likely going to need to work extra 30-60 minutes longer to accomplish my normal tasks. And the cost is extremely high or unacceptable for certain situations (e.g., meetings with important clients or public seminars). So I told the doctor “no” at the time.

    Maybe a year later I got to the point where the side effects associated with painkillers during flares were too high, and interference with my workflow that came from frequent breaks was a smaller price to pay. I still don’t do it all the time, but now it is on my list of things to do during flares for pain management.

    I noticed this with a number of other suggestions as well that were made by various pain management doctors.
    I definitely fit into the “high functional” category. I think if I was really non-functional, I would be ready to try them, because there would be nothing to lose, in a way. Procedures can be attractive if they appear to have less cost in terms of life impact than the effort one has to put into pain management.

    My definite preference is for pain management, because I can do it by myself, and I indeed don’t like being in a passive role. I do employ a lot of the typical techniques – relaxation, pacing, figuring out alternative ways to do things, time management and planning for flare-ups. What frustrated me over the years were “bumps” when for one reason or another pain spun out of control so completely that I could not cope anymore (i.e. not a flare that lasts a couple of weeks, but a deep, permanent decrease in function). This is when I wanted medical help, but found it find to get because I was in a pain management program that discouraged that.

    I guess this goes back to “right things for right patients”. I can see that the scenario when someone’s hopes are perpetually raised and dashed would be very painful, and also that someone may feel that learning the right skills is not important because there is an easy fix out there. If I were choosing for myself, though, I would have much preferred a team where a psychologist interferes early on, but I would still have access to the medical side of things when I need it. But I am perhaps an exception – I did pretty thorough research early on about my symptoms, and I had few illusions about the existence of a permanent fix.

    1. Thanks Mary! I can see you’ve had a long road to reach where you’ve got to – and maybe it’s not just the ‘right things for the right patients’, but also a case of ‘the right time’! BTW Pacing can be done in many different ways – I’d find ‘having’ to take a break every 30 minutes would drive me nuts – I prefer to wait until I’ve completed a ‘chunk’ of work, and sometimes it is 20 minutes, other times it’s 45 minutes – whatever, I find I get up and wander around and do a stretch or something and it just gives me a moment to be in my body.
      Flare-ups can really knock confidence, and in my case there isn’t any medication that tides me over – but I do know that the current flare-up I’m having will settle at some point, and even if it doesn’t, I can still do what I enjoy provided I use the coping strategies that I now have a good deal of confidence in.
      Thanks for sharing your thoughts and i hope you keep on visiting!

  4. I agree totally. If a patient is engaged in pain reduction they are not really in a mindset to accept their pain and move on . they aRE CONTINUOUSLY LOOKING FOR TREATMENT WHICH IS FINE BUT NIT COMPATIBLE with pain management.

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