We were having some chat on twitter last night about chronic pain. People made a lot of interesting points and I'm brewing another post that uses those, but I was asked a question by @Tricia_the_doc which I thought was a good place to start : "What are the best tips you can offer docs in terms of things to do or say? (I can guess some of the don't do things!)"
It's an interesting question, because as with many things I am much better at talking about what not to do. With some general disclaimers that this is based on my experience as one person with chronic pain and that others might completely disagree, I came up with the following.
1) And this one is for both 'sides' of the conversation - it's important to recognise the barriers created by previous bad pain management.
As a patient, I recognised that I feel defensive whenever a doctor mentions my pain medication, because so many times in the past I've been told that I don't need it / I'm too young for it / I have a low pain threshold (which is a very stupid reason to deny painkillers) / I'll get addicted etc.
When doctors believe that I'm in pain I am able to relax into a conversation about pain management without worrying that the subtext of the discussion is 'You're not in pain so I'm stopping your painkillers', in the same way that I can have a calm and rational discussion about changing the dose of my asthma inhalers.
I get anxious when doctors threaten to stop my painkillers because I am in pain. The painkillers I use make the pain bearable most of the time. Without them I am in constant, unbearable pain - the kind of pain that sends you out past screaming into practical catatonia. Without meaning to be hyperbolic, threatening to stop my medication is essentially threatening me with torture. So yes, I am anxious.
I would like my doctors to recognise that it is normal for me to feel defensive and anxious about my pain management. Sometimes if I talk to a patient who I sense is becoming defensive in a similar way, I will say 'I believe that you are in pain - I'm asking these questions to get to the bottom of it, not because I'm trying to catch you out'.
2) The tricky bit of chronic pain management of course is patients who
you suspect are misusing pain medication in some way - becoming
addicted, selling it etc. As someone with chronic pain I am inclined to
say that this is not my problem and certainly I believe in erring on the
side of caution - I think that I would rather unnecessarily treat
someone not in pain than not treat someone who is. However, I also
understand that 'drug seeking' wastes time and resources as well as
putting people's health in danger.
If a doctor were to
think that I was misusing my medication I would appreciate an open
conversation with them about it - expressing concern for my wellbeing,
offering support, suggesting alternatives - and remembering that many
people who misuse pain medication do actually have underlying chronic
3) It is rare for doctors to make positive suggestions about my pain management. Far more likely (most doctors I visit) is for doctors to suggest removing elements of my treatment without asking me what my pain is like or how well controlled it is on my current plan.
If you genuinely think that I might get better results from another medication then I would definitely like to hear about it! However, because of aforementioned anxiety, it would be great for you to make clear that it is my decision and that if it does not work you will re-start my previous medication. Ditto, if you think that I could still be well maanged at a reduced dose because my condition has improved.
A specific word r.e. paracetamol - a lot of my friends on being told that they should take regular paracetamol alongside stronger meds think that this is a sign the doctor hasn't understood how bad their pain is. Make extra clear that paracetamol is actually very effective (even though it can be used for mild pain, that doesn't mean it is a weak drug) and that it enhances the stronger medications.
Non drug treatments are also useful - especially things like mindfulness practice which help people to cope with experiencing pain (the aim of chronic pain management is to manage pain, not to remove it entirely). Please make it clear if you mean this as an adjunct to drug therapy rather than a replacement. See point 1!
If you have anything to add or you have a different perspective, please feel free to share =]