Fine tuning activity levels

A couple of days ago I wrote about activity patterns, and a study from Maastricht University that looked at the variable levels of activity that people with chronic pain can engage in. The study was designed to look at the pattern of activity from day to day, and found ‘… that for most of the participants, their activity levels varied from day to day, with high activity levels interspersed with low activity level days.’

Huijnen, Verbunt, and colleagues suggested that ‘for patients with chronic pain this could represent an activity pattern characterised by interfering involuntary rest stops due to pain. The high level of fluctuations could be a representation of the sawtooth pattern in their activities. Patients go on with their activities till the activity is finished and afterwards they have to take rest to recover.’(2009) While the overall (mean) activity level may be fairly ‘normal’ and not directly associated with their reported disability level, the higher their disability level the higher the peaks and troughs of activity. The conclusion was that ‘patients who have a disabling fluctuating pattern in their activities, [may] benefit more from learning strategies to fine tune their activities during the day instead of increasing their activity level.’

Many self-help books and resources developed for professionals to use contain the concept of activity ‘pacing’ – this is typically about setting a baseline level of activity, and gradually building up activity tolerance until the desired level is achieved. The problem with this concept is that when you ask a person what pacing is, they invariably say something like ‘break the activity up into smaller chunks’ or ‘take breaks in the middle of an activity’ – which can actually lead to pain being the guide and overall lower levels of activity. I wrote about this some time ago when I discussed the lack of evidence for pacing, and a paper by McCracken and Samuels found that it loaded on to a set of ‘passive coping strategies’ used by patients, rather than being an ‘active’ coping strategy (2007).

Perhaps the problem is, as Huijnen & Verbunt et al suggest, one of ‘fine tuning’ activity levels. And maybe the term ‘pacing’ needs to be banished! I suggest calling it either a ‘quota’ system, where a pre-determined amount (either time or portion of an activity) is used, or calling it ‘activity regulation’ – where the amount of activity is regulated just as we regulate emotions, physiological arousal and exercise.

I’m keen to get some sort of definition around this term because while the name itself isn’t important, the pervasive view from both therapists and patients is that pacing involves slowing down how much should be done at one time – and it almost always leads to pain being used as the guide.

In practical terms I think what can happen is this: a person starts on a certain amount of activity, say 10 minutes vacuuming, then 5 minutes dusting, back to vacuuming for 10 minutes, and so on. On a good day, this is manageable – or maybe a little too easy, so the person decides to do a little more – 15 minutes vacuuming. By the end of that day, pain intensity has risen, the person sleeps badly (I’ve written about the relationship between pain intensity and poor sleep – poor sleep leads to increased pain intensity which leads to poor sleep and so on). So the next day, instead of doing 10 minutes of vacuuming, the person does 5 minutes, and sits down to rest in between.

Or perhaps all goes well for a day or two, then a ‘high risk’ situation arises – someone is coming to visit! The person decides to go all out and vacuum furiously and do the whole house, collapsing by the time the visitor arrives. Next day, the person is too sore to do anything.

Or maybe even the person carries on with the paced level of activity, and after a week increases the amount of vacuuming as instructed, but this immediately increases pain intensity (which is expected), but the person forgets this – and adjusts the vacuuming level back to the original amount on the day following.

The key things that may help are these:

  1. Never ever let pain be your guide in setting activity levels!
  2. Do no more on a good day,  no less on a bad
  3. Work through cognitions that may trip you up ‘I must’, ‘I should’
  4. Especially work through ‘I can’t do this because my pain is too bad’
  5. Develop coping strategies for when the pain levels do increase (and they will!)
  6. Remind the person that an increase in pain is to be expected when increasing activity level – but that it will pass and the body will habituate to it
  7. When planning increases in activity level in a graded way, work through at least one increase successfully with the person before you stop your support – this way the person might just see that it’s possible to successfully increase activity without the world falling apart, even though pain levels do increase

Developing activity regulation is as much about thoughts and emotions as it is about planning, fitness, and physical ability.  It’s my belief that any therapist who is helping someone change their activity level either through exercise or daily activities (ie physiotherapists, occupational therapists, nurses, social workers, psychologists) need to actively help the person develop awareness of, and ability to challenge, their thoughts about fluctuations in pain.

HUIJNEN, I., VERBUNT, J., ROELOFS, J., GOOSSENS, M., & PETERS, M. (2009). The disabling role of fluctuations in physical activity in patients with chronic low back pain European Journal of Pain DOI: 10.1016/j.ejpain.2008.12.008

McCracken LM, Samuel VM. The role of avoidance, pacing, and other activity
patterns in chronic pain. Pain 2007;130(1–2):119–25.

Self management support – what patients really want?
The term ‘self management’ is used a lot in health care, but I’m not sure yet whether there is a satisfactory definition of it. Some of the definitions I found on the internet suggest it’s a relationship between the patient and the practitioner, with the focus on the patient ‘taking responsibility for doing what it takes to manage [the] illness effectively.’

Another publication I found, written by two New Zealanders, suggests self management is about ‘engaging in activities that protect and promote health, monitoring and managing symptoms and signs of illness, managing the impacts of illness on functioning, emotions and interpersonal relationships and adhering to treatment regimes in partnership with health professionals and community resources.’ As an aside, that particular document I’ve cited from contains some excellent recommendations for how to support people to make some of the changes needed in self management.

Some of the things I’ve identified from my ongoing work in pain management are that people have to be ready to make changes to live with their health condition rather than focusing on getting rid of it, that self management can include a range of different behaviours that sometimes at face value don’t seem to be ‘self’ management at all – for example, obtaining ongoing treatment from a health provider such as a massage therapist or chiropracter… and that self management doesn’t happen quickly because it involves a range of long-term habit changes.

Back to today’s paper, written by a group of researchers from the Butler University in Indianapolis. This paper examines, through focus groups, the responses of a group of people with chronic musculoskeletal pain, to nurse ‘care managers’ as compared with primary care physicians. Now in New Zealand I don’t think nurse care managers are routinely employed, but perhaps the GP practice nurse could be in a similar role.

In this study, participants from a combined chronic pain and depression management programme were involved in focus groups to discuss their experience of the two health providers. The self management programmes some of the participants were involved with included six sessions of education, goal setting, exercises, relaxation techniques and methods to overcome fear of reinjury and negative emotions. In chronic pain management terms, this is pretty standard self management but compared with an intensive cognitive behavioural approach for chronic pain, was probably a little on the light side. Other participants had routine care through a physician.

The methodology of focus groups has some good points and some not so good points – good points are that, as these authors point out, ‘collective energy’ from group members can help elicit rich and dense qualitative material for analysis. Not so good points can be that ‘groupthink’ can emerge, with that good old confirmatory bias that humans do so well meaning everyone in the group starts to say the same thing rather than disagreeing.

Anyway, back to the results. The authors of this study state that despite not specifically asking about the difference between nurse care managers and physicians, this was a strong theme that emerged.

Specific concerns participants had about physician-based management included lack of time, access and continuity of care from physicians, that doctors ‘didn’t understand the pain’ (participants indicated they thought ‘doctors don’t understand that you are having pain because they’ve never had it’), and that doctors didn’t have time or inclination to listen. Some participants thought doctors were particularly looking for ‘a quick fix’, saying things like ‘Don’t rush out of the room… They need to pay a little more attention and ask a few questions’.

In terms of treatment, participants thought doctors either under or over prescribed pain relief, with the majority in these focus groups saying they were overprescribed.

By comparison, nurse care managemenrs were most often referred to as ‘understanding’, ‘helpful’, ‘took a lot of interest’. Nurse care managers spent more time in conversation with participants with at least bi-weekly visits or phone calls. Nurses were reported to spend more time listening, and participants said they ‘kept me on track in my pain management’.

Hmmm. So the relationships were different – not surprisingly, when the nurses were provided with more time to spend with patients, and the specific role of the nurse care manager was to encourage and reinforce healthy behaviour!

I wonder whether specific outcomes such as reduced disability, improved engagement in life apart from being a ‘patient’, and general activity level and mood were improved – and whether this was sustained.

One of the problems I see with an approach where people with pain are encouraged to maintain contact with a health provider is that they will do just that – maintain contact with health care providers. While this is pleasant for some (who wouldn’t like an hour with someone who is specifically there to talk all about YOU?!), it also means that while this goes on, the person becomes a patient or a recipient again – and talks about his or her pain.

I wonder what it might be like if that person was out doing grocery shopping, spending time with family and friends, enjoying the sun, wind and rain, reading – anything but focusing on pain and receiving care. In the end, do programmes that encourage ongoing engagement in ‘care’ enable participants to go out from ‘care’ into the real world?

This particular paper vexed me also in that it described ‘outcomes’ in terms of patient satisfaction – yet satisfaction is only one aspect of outcome. Patients ‘enjoying’ input may not be in the best interests of the patient! Sometimes it’s important to challenge beliefs, to be a little hard-nosed, to encourage the person to take those scarey steps forward into independence. After all, I may enjoy staying in bed all day – but it’s not going to help me get to work!

Some good things came from this study, though, as it’s clear that patients are not always certain of what they want from their doctor – some want medication, others don’t. Listening skills and the appearance (at least) of having more time with patients is a theme across many studies looking at medical practitioner and patient interactions. The ongoing question is whether these skills make a difference to what the patient can and does do in the real world.

Matthias, M., Bair, M., Nyland, K., Huffman, M., Stubbs, D., Damush, T., & Kroenke, K. (2009). Self-Management Support and Communication from Nurse Care Managers Compared with Primary Care Physicians: A Focus Group Study of Patients with Chronic Musculoskeletal Pain Pain Management Nursing DOI: 10.1016/j.pmn.2008.12.003

If you’re new to pain management

This is just a brief foray into thinking about what people new to pain management might need to know in the first few months.  I’m definitely not being academic about this, and I don’t have any references – it’s my reflections on seeing people starting in the field looking a bit like a possum in the headlights!  (For non-kiwi’s, the possum is high on cuteness, and more than high on destructiveness – and one of the best ways to catch a possum is to go spotlighting!)  (Photograph by PJWood, apologies for not crediting this before, this image is common on the internet).


Why do they want me to see a psychologist – I’m not nuts, I just have pain!

Explaining to someone that seeing a psychologist about chronic pain might be helpful can be a bit like this:

Yup, brick wall – hard object!

I can see it from the person’s point of view – it’s taken a long time (usually) for medical and other people to recognise that this pain isn’t simply going away, and isn’t about the person being ‘pathetic-why-don’t-you-just-pull-yourself-together’, so when someone suggests that psychology might be helpful it’s like saying ‘You’re nuts, you’re just losing it’ – or worse, ‘you’re a hypochondriac’.

I thought it might be helpful to review some ways to introduce the idea of seeing a psychologist (or other allied health person), or using a CBT perspective in pain management. (more…)