Medication and Self Managing Chronic Pain (ii)
If medication is to be part of a toolkit for self managing chronic pain, then it seems to me that it’s important to know as much about the medication and how it should be used as possible.  Once again, today I’m not directly referring to the literature because I haven’t found an awful lot discussing this integration approach, so please bear this in mind when you read what I’ve written.  I’m also not a medical doctor, I don’t prescribe, I don’t want to have prescribing rights, and I must advise any reader NOT to change, reduce or increase medications without having a good discussion with your own medical practitioner first.

There are two main paths in pain management – one focuses on pain reduction, and this is where I think medication (and surgery and procedures like injections) fit in.  The other path is pain management where increased function and learning to live alongside pain is the main focus. For if there is one thing that struck me when I read Nicholas, Molloy and Brooker, it was the finding that simply reducing pain does not necessarily improve the ability to do things. It’s a finding I’ve seen time and time again – and reminds me that pain is a complex thing, it involves a person who processes and interprets everything that is happening, has happened and could happen in the future – and as a result if clinicians fail to address those interpretations, improved function is not necessarily going to follow reduced pain.

Back to medication.  All medications involve balancing the intended effects (hopefully beneficial effects) with the unintended effects (or side effects).  Because each person metabolises medications differently, we can never be entirely sure of the usefulness of any specific medication.  It truly is a process of trial and error, albeit based on some fairly strong evidence for specific groups of drugs.  At the same time, while the pharmacological effects may be reasonably well known, what is often less appreciated is that people often don’t take the drugs in the way the prescriber expects.

One thing nonmedical clinicians can do is understand some of the pharmacokinetics of medications in order to help patients understand why the medication is prescribed the way it is, and at times, to help work out the best timing for taking a medication.  As I mentioned yesterday, chronic pain is a chronic condition, so if a medication is found to be effective, it’s likely to need to be taken regularly for a long period of time.  It also means that it works best if taken at the same time each day, and consistently every day.

When should self management be integrated with pain reduction efforts?  Well, the jury remains out on this.  In practical terms I have found it really difficult to help people focus on the hard work of self management when they are still anticipating that pain reduction may abolish their pain.  There are pain management centres where people are helped to withdraw from all medications before embarking on self management – at the centre in which I work this is not the case, but we do strongly encourage doctors and patients to complete the pain reduction approaches before starting pain management.

Some of the reasons for this are pragmatic – if people are still working with new medications while learning self management, they may find it very difficult to cope with the daily demands of the three week programme because of side effects.  Participants may credit any changes in coping or function to the medication rather than their own coping skills.  Participants may find it difficult to have confidence in their self management skills because medication is readily available and it is much easier to use medication in a flare-up or setback period than draw on newly developed self management strategies.

We have also found that people who may be working through further pain reduction options find accepting that pain fluctuations are common while developing self management skills quite difficult – and it seems clear that acceptance of a certain amount of pain is an important part of reducing disability and distress (see McCracken & Zhao-O’Brien, 2010).

To sum up so far, pain medication can be part of a toolkit of coping strategies for managing chronic pain.  It’s best if medication is taken on a time contingent basis, and there needs to be a balance between side effects and positive effects for it to be worthwhile.  It can be difficult for people to be confident to use pain management strategies when pain reduction options are still in the running because self management requires a degree of acceptance that pain will be present, and it will fluctuate – and self management is difficult.  It’s also important for clinicians to be confident to discuss how to and when to take medications to make the most of the pharmacokinetics of the drugs.

But wait! There’s more to come tomorrow! And hopefully I’ll be able to dig out some readings on the topic as well.

Nicholas, M., Molloy, A., & Brooker, C. (2006). Using Opioids With Persisting Noncancer Pain: A Biopsychosocial Perspective The Clinical Journal of Pain, 22 (2), 137-146 DOI: 10.1097/01.ajp.0000154046.22532.fe

McCracken, L., & Zhao-O’Brien, J. (2010). General psychological acceptance and chronic pain: There is more to accept than the pain itself European Journal of Pain, 14 (2), 170-175 DOI: 10.1016/j.ejpain.2009.03.004

Medication and self management for chronic pain
Last week a reader asked me for my take on using medications for chronic pain, so today I’m going to take a stab at this rather emotive and certainly very complex topic.  Before I do so, a word of warning – this is mainly my opinion and experience!  I’m also not a medical doctor, I don’t prescribe, I don’t want to have prescribing rights, and I must advise any reader NOT to change, reduce or increase medications without having a good discussion with your own medical practitioner first.

Strangely, I had trouble locating journal articles on combining medication and self management, so I either need to refine my search terms – or there may not be an awful lot of information out there about it.

Despite the lack of information that I could find, more people than not are taking medication for their chronic pain, even when also using self management.  The high rate of medication use is not surprising – medication is a mainstay for medical practitioners, and most people who want help for their pain go first to their doctor and, almost inevitably, are started on some sort of medication.  It’s also comparatively easy to take medications than do self management.

The aims of medication are usually to either directly affect pain intensity or to try to address any underlying conditions that might be influencing pain intensity.  Many medical practitioners follow the WHO ‘analgesic ladder’, and start with simple analgesics like paracetamol, work their way up through NSAIDs, and on to secondary analgesics and finally use opioids – starting with weak opioids like codeine, then bringing out the big guns like morphine and morphine derivatives.

It all sounds so logical, doesn’t it?! But for many people with chronic pain, medications don’t seem to do an awful lot. Either they don’t change the pain very much (and one study I read estimated that a 30% reduction in pain intensity was actually really good), or the side effects are too horrible for people to cope with – things like sedation, feeling foggy in the brain, nauseous and constipated are quite common.  For some people at least, medication is not the best way for them to manage their pain.  This can be a problem because we’re used to having some sort of pill, potion or procedure for almost every ailment, and it can be incredibly distressing to find out that there isn’t such a remedy for the very common problem of chronic pain.

Although I promote self management on this blog, I want to make it clear that I think if there is a medication that reduces pain intensity, doesn’t have unpleasant side effects, doesn’t need to have the dose progressively increased to obtain the same effect, and is taken on a time contingent basis (ie not just ‘as needed), then it’s a good thing and should be used.  After all, I take medication for low mood, people with diabetes use medication to reduce blood glucose levels, epileptics take medications to prevent seizures – so why shouldn’t people with chronic pain take medication to help manage their pain?!

At the same time, from paper by Nicholas, Molloy and Brooker (2006), it looks like medication use, particularly opioid use, for people with chronic pain is not always well managed.  And from the number of people I see at the Pain Management Centre in which I work who take a strange and often idiosyncratic concoction of tablets, I don’t think things have changed very much since this paper was written.

First things first, what are we trying to treat in chronic pain?

Remember that chronic pain by definition is pain that persists, and is often unrelated to the original causal factors.  Healing of any tissue damage has occurred, and so as time goes on we have fewer ‘issues in the tissues’ and more factors relevant to how the brain (nervous system in general) processes information about the state of the tissues.

Basically, we have a brain that is very good at noticing factors in the tissues and environment that could harm it and it rapidly brings this information to consciousness so we experience pain, attend to the matter and DO something.  This works well in acute pain – but in chronic pain the brain is working too effectively and instead of helping, lets us down.

In simple terms, the way in which pain medication works is to change the amount of information transmitted, or the ways in which that information can be received.

Chronic pain is just that, chronic.  It needs a regular supply of whatever medication is prescribed to address the problem.  Unless the pain is really low, what this means is a regular, time contingent amount of medication.  This ensures a consistent level of whatever the drug that is active is present all the time.  So it’s probable that using medication on an ‘as needed’ basis is not going to be terrifically useful.

Many people don’t like taking medications, and may leave using it until the pain has increased in intensity to quite a high level.  Others anticipate an increase in pain and may take it far too early.  In both cases, the amount that is required in the blood stream may either arrive too early to be useful, so the person ends up needing to take more after the first dose because it has worn off before the pain has settled down, or there isn’t enough on board soon enough so the person takes more to reduce the pain, again ending up with more on board but at the wrong time.

If the medication is effective, it can act quite quickly, and this can be a very rewarding (in the psychological conditioned learning sense), by reducing the presence of a negative/aversive stimulus, and this in itself can increase the use of medication.  At other times, when the pain level is quite high, distress can also increase – just by taking some sort of action (in this case, taking medication), distress can reduce, and this can also act to reinforce the action of taking medication.

So a regular, time-related use of medication is a good starting point.

What about flare-ups?

Flare-ups can go by several different names – I prefer to use the term ‘flare-up’ to represent a temporary (although it can feel like it’s going on forever!) increase in pain.  Other people call this ‘breakthrough’ pain, suggesting that the pain is ‘breaking through’ the analgesia – but for me, this isn’t a good term simply because in chronic pain the pain reduction is often not that high, so there is always a certain amount of pain present.

I think (note that this is my opinion!) that remaining on a baseline level of medication during a flare-up, and instead recruiting more self management, perhaps making some allowances in terms of expectations, perhaps increasing the use of breathing, positive self statements, setting temporarily smaller goals and so on, allows for a greater sense of control over the situation and a greater sense of confidence in the coping strategies that are used.  It’s like being able to say that ‘I got through’ fosters self belief rather than belief in something external.

I intend to write more about medication and self management through this week.  With any luck I’ll find some readings to supplement my thoughts!  In the meantime, I welcome comments, thoughts, questions – we can learn from each other!

Nicholas, M., Molloy, A., & Brooker, C. (2006). Using Opioids With Persisting Noncancer Pain: A Biopsychosocial Perspective The Clinical Journal of Pain, 22 (2), 137-146 DOI: 10.1097/01.ajp.0000154046.22532.fe

Do patients take their medications?

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I don’t often write about medications, not because I don’t believe in their use but because that’s not my focus.  However, just to put the record straight: medications and medical management of chronic pain has a place in the model of pain management I use.  After all, it is the ‘bio-psychosocial’ model, not the psychosocial one!

I am interested in how often people follow the advice of their health providers, because if my aim is for people to manage their pain by themselves I really would like them to go away having tried something and knowing whether it is helpful or not.  A treatment can’t be useful if the person doesn’t actually give it a good go.

So something I usually ask about is how closely a person follows the advice of a doctor with regard to taking medications.  Of course that’s presuming the doctor has prescribed a medication with full knowledge of the most effective way to use it, and recognising how to minimise the effect of side effects!  Some doctors don’t always understand how debilitating side effects like drowsiness, dry mouth, constipation and increased perspiration can be.

Often I find people tell me ‘I tried [X] drug but it didn’t work’, so I ask how they took it and they’ll say something like ‘Well I took it for a couple of days’, or ‘I took it when my pain was really bad’, or ‘I took it only when I thought I needed it’.  Sometimes this difficulty comes from a basic distrust of medications – ‘all these chemicals I’m putting in my body’ (tobacco and marijuana don’t count as chemicals…!), and sometimes it’s because of fears of addiction and tolerance; other times it’s concern from others ‘my partner doesn’t think I’m depressed so he said I shouldn’t take [X]’.

But sometimes it’s something even more basic than this – have you ever read the labels on ‘how to take this medication’?

Given that so many people attending pain management have poor reading skills, one of the problems getting people to take medications as prescribed could just be about not understanding the instructions.  With many people being prescribed quite a battery of drugs, up to four or more different ones all to be taken at different times, some with food, some on an empty stomach, some with water, some never to be take with grapefruit juice – well, you get the picture.

A quick moan here – I’m often surprised and distressed that individuals I see have been prescribed medications that they don’t like or don’t take according to the instructions and they have never been seen by their doctor to establish whether the medications are working!  So I hear that people are taking, on an ‘as needed’ basis, medications like amitriptyline or nortriptyline – just every now and then.  Or others are taking anti-inflammatory meds – with no effect.  Surely part of good health care is to review whether your intervention has had an effect of some sort?

The paper I found yesterday by Broekmans and colleagues, looks at the adherence rates of people attending a multidisciplinary pain management centre, and it’s unusual for several reasons: as they identify, there are very few studies on medication adherence in non-cancer pain; the studies that have been carried out often have methodological problems (what is adherence anyway? are we looking for over-use, under-use or abuse? how is adherence measured?).  Some good points – one person I saw recently told me of taking codeine 60 mg ‘between 26 – 36 at a time’…and wondering why his GP didn’t want to prescribe him any more!  That’s over-use.  Another said she had been prescribed a long-acting opioid, but took it only when she felt like she needed it – that’s under-use.  While yes, there are a few who we find are abusing medications to feed an addiction (probably the first example I gave).

What did this study find?

743 patients were seen in the Centre, but over 380 didn’t meet this study’s inclusion criteria, so after those who didn’t want to participate were also excluded the study only had 281 participants.  So it’s probably a little under-powered, but that’s the reality of working with ‘live’ patients in a real clinical setting.

Their findings indicated that only just over half of these participants adhered to the medication regime as prescribed.  That’s right: only half!  14% of the remainder were over-using their medications, and 32% were under-using their medications, and a very small percentage wavered between the two.

Wow! That’s a large group of people not getting the benefit of the medications they’ve been prescribed!

Some of the factors that this study identified relevant to adherence were age and health insurance status.  It’s a shame health literacy wasn’t studied, but some of the following were – the number of pills that needed to be taken, the number of prescribed analgesics, the time since the last medication changes were made, smoking behaviour, self-medication (more in under-users than over-users – interesting that).

The drugs that were over-used – opioids.  How did you guess?  At the same time, opioids were also the most under-used – again, did you guess that?

While the patterns of over- and under-use weren’t straightforward, things like pain intensity or diagnosis weren’t associated with how closely people followed prescriptions.  That’s another piece of evidence supporting the lack of association between pain intensity and treatment-seeking behaviour.  Although it wasn’t studied in this paper, I’m guessing that distress and external locus of control might be more associated with over-use of medications, or using medications only ‘as required’.

Medications can be an effective part of a pain management plan – but they can’t be effective if people don’t take them according to the way they’re prescribed.  Or at least the chances of them being effective are much less.  And what’s really concerning is that so many people didn’t follow the prescribing advice and without close monitoring and actually asking the question about medication adherence we would be none the wiser.

A psychosocial assessment needs to include questions about how a person is using medication. If it’s only used when the person is experiencing high pain intensity and associated distress, the effect may be more about a learned response to ‘taking control’ or reducing distress than any pharmacological effect.  And it’s pretty important to know about why the person is taking medications differently from the way they’re prescribed.  Maybe it’s because of side effects that are just intolerable.  Maybe it’s because there are too many pills to keep track of.  Maybe it’s because of family pressure or beliefs.  Maybe it’s fear that by taking medications they may be doing harm to their organs long-term.  Maybe it’s also about fear that by using medications they are ‘masking the pain but the damage is still going on’.

I’m inspired to conduct a similar study in our own Centre – I’m not sure that our results would be very different from these.  But we won’t know if we don’t ask.  And if we ask – it might just help the people we’re seeing.  It’s not just a medical or nursing question: it’s a behaviour and is based on beliefs, attitudes and biases as well as learning.  All good things that all health care providers working in chronic pain management need to know about.  I simply wonder why so few of the psychological reports (written by?) include this very important information.

Oh BTW – I’m expecting a LOT of spam from this post – they just all come out of the woodwork with those magic words ‘opioids’, ‘medications’, ‘drugs’, ‘pills’!! You wait and see…!

Broekmans S, Dobbels F, Milisen K, Morlion B, & Vanderschueren S (2010). Pharmacologic pain treatment in a multidisciplinary pain center: do patients adhere to the prescription of the physician? The Clinical journal of pain, 26 (2), 81-6 PMID: 20090432

What is breakthrough pain, and what about using medication for it?
Everyone knows that chronic pain continues, and anyone who has chronic pain will tell you that it fluctuates.  Some days are ‘good’ (well…better), some days are …well… not so good.

Some people think of this pain as a new injury‘. Of course, the change in pain is rarely associated with tissue damage, calling it an ‘injury‘ is probably not especially accurate.

Some people call the change in pain acute on chronic pain.  I’m not sure what the ‘acute‘ refers to – acute pain is usually defined as short-term, and is often associated with tissue changes.

And some people call it breakthrough pain, probably drawn from the term used in cancer pain. (more…)

What’s getting in the way of good pain management in rheumatoid arthritis?
It seems obvious, doesn’t it, that if there is a good understanding of the mechanism of a painful disease, some effective ways to treat it, and it’s an ‘acceptable’ disease to have (unlike some mental health disorders) – then people with the disease should really have great pain relief…or is it?
This study by Fitzcharles, DaCosta, Ware and Shir really grabbed my attention because it made a couple of points I hadn’t considered – firstly, that many people with chronic conditions that have effective treatments continue to have high levels of pain (but often don’t get to see a pain management service, even though they are being treated in a specialist rheumatology clinic), and secondly, that there are many differing reasons for people’s reluctance to take medication for pain relief, but often it’s the only option offered.

I won’t review the whole paper here, you’ll need to read the original (it’s worth it, because it has some good references and explores some interesting issues), but I do want to reflect on a couple of things that were identified regarding pain, patient and clinician attitudes, and rheumatoid arthritis.

OK, here’s how the study was carried out

Briefly, the methodology was to interview, using a standardised interview conducted by a nurse clinician, a total of 60 patients who were sucessively recruited over a six month period, and provided they could understand the questions, were 18 years and older, and had a definite diagnosis of rheumatoid arthritis (RA).
Several standard assessments were used as well as the interview, these were:

  • Health Assessment Questionnaire (HAQ), and measure of functional status
  • Preceding week pain intensity (VAS and four-point likert scale)
  • McGill Pain Questionnaire
  • Pattern of pain, including night pain, distress (as recorded on a five point likert scale), interference of pain (on a four point likert scale), as well as expectations about the disease, beliefs that pain may be relieved, beliefs about the degree to which the clinicians as well as family and friends understood their pain experience, and satisfaction with pain management.

Each participant was also asked to identify barriers to pain control by indicating from a list of six reasons plus an additional open-ended question.
The barriers identified were:

  • fear of side effects of medications
  • fear of drug addiction
  • fear of drug interactios
  • fear of masking the disease
  • aversion to using many pills

What did they find out?

I won’t go through the statistical methods, nor all the results, but cut to the chase – most of the participants were using DMARDs, corticosteroids, and codeine. Most had RA for around 14 years (+ or – 10.7 years), and most were aged around 57 + or – 13 years.

66% had pain at night, with 23% reporting pain more than once at night.

87% expected that they would have ‘some’ or ‘much’ pain, while only 13% thought they would only have no or slight pain.

85% thought their pain could be relieved, but as I said before, 65% thought their pain was managed fine. 47% wanted better pain relief – even if they had been happy with their current regime.

Why are so many of these people reporting quite high pain intensity, but not actually asking for or receiving more medication? More to the point, why, in this study, was medication thought to be the only way to manage pain?

Well, sadly I don’t know why pharmacological means for managing with pain was the only option explored, but I can report the reasons these patients gave for being somewhat reluctant to obtain medication.

Firstly, the average number of barriers given were 2.6 = or – 1.5, with over 50% reporting 3 or more barriers.
Most of the people reported concerns about side effects (80%), taking too many pills (63%), concerns about drug interactions (57%), worries about addiction (35%) and concerns that treatments might mask the disease (27%). The more barriers identified, the higher the pain intensity reported – and interestingly there was a strong relationship between pain intensity and concern about taking too many pills.

What does this mean?

I’ll go through some of the thoughts of the authors of this study first, then make some comments of my own.  By the way, there are some limitations to this study worth thinking about – the barriers were elicited during a face to face interview, and the interview was carried out by a member of the staff of this facility. There are ‘demand characteristics’ when someone who works in a centre asks if there are barriers to taking medications, or if pain relief is adequate. There was a pre-determined list of barriers given, and although an open-ended question was also asked, simply by providing a list some of the variety of reasons may be lost.  That aside, it’s nice to see a study looking at what the patients believe rather than assuming the reasons behind decisions patients make.

The authors identified that these patients were receiving fairly standard treatment for their RA, and had moderate control of the disease, so were representative of people who receive specialst care for their RA. Their MPQ scores were around the same level as those in a previous study conducted by Burckhardt (1992).

Although RA pain intensity fluctuates during the course of the disease, the basic expectation of people is that it is painful – so many people would expect that they ‘should’ have pain. The authors suggest that perhaps people are more concerned about the deformities arising from the disorder, and perhaps the fatigue and low mood and even the functional limitations from mechanical joint changes, than pain reduction. They also suggest that perhaps the clinicians may pay more attention to managing the disease rather than the pain of the disease. They then go on to suggest that it is timely to consider the concept of ‘barriers to pain relief’ to understand why patients are reluctant to pursue pharmacologic management.

I think this latter concept is really important. People with RA, or any painful condition, have thoughts and beliefs about using a variety of ways to cope with pain. Often they are seeking a simple solution such as a pill – but as we know, there are good things and not so good things about taking medications. (Actually, there a good things and not so good things about all the ways we have to cope with pain!) Until we take the time to explore the person’s own thoughts and reasons for remaining ambivalent, we won’t have an opportunity to invite them to consider other options.

Better information about each of the barriers these people identified might help them feel much more comfortable with making a choice to seek pharmacologic approaches. At the same time, it’s important that we recognise that pain reduction through pharmacology is not the only way to manage pain.

I’m disappointed that nonpharmacologic ways of coping were not explored in this study. Here is a group of people, over half of whom were reporting moderate or greater levels of pain, and around 85% who thought their pain could be better managed, but who didn’t want to take medication because of concerns about this as a strategy.

While they were living their life, coping with everyday activities with quite a lot of distress and loss of function – some of the most effective ways of coping with pain in order to have a good quality of life were not explored.

Is this good disease management? Maybe it’s good disease management – but these are people with a disease!

Has anyone checked with these people as to whether they do believe they ‘should’ have pain?  Are patients really more concerned about deformity and fatigue than pain relief?  Did anyone ask them?  Isn’t there an occupational therapist, nurse, social worker, physiotherapist, psychologist – or even a doctor – with the time to explore the person behind the inflammation?

I guess my frustration is that chronic illnesses are still managed often as though they are like a broken leg – you fix the tissue dysfunction, the person goes away back to their usual life.  But chronic means ongoing – that means this person isn’t going to ‘just get better’, they need to make adjustments in many areas of their life – and they have the right to be offered effective life management as well as effective disease management. What do you think?

M FITZCHARLES, D DACOSTA, M WARE, Y SHIR (2008). Patient Barriers to Pain Management May Contribute to Poor Pain Control in Rheumatoid Arthritis The Journal of Pain DOI: 10.1016/j.jpain.2008.09.012