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
pain.
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 =]
Excellent post! These are great, and to expand on the paracetamol one, I wish doctors wouldn't give people in pain vague advice.
ReplyDeleteFor example, lots of people with a chronic pain problem feel threatened or as if they're being dismissed when exercise comes up, because usually advice about exercise is fantastically vague, when (a) in most conditions, there's certain kinds of exercise which would be particular useful - sometimes specific muscles that need strengthening and (b) in most physical conditions, there'll be kinds of exercise, or degrees of physical activity, which will make things worse (even in non-physical conditions, running a marathon on your first day of "getting fit" is likely to damage you!)
I was so sick of being told "Well, do as much as you can without it hurting too much." I could have kissed the first doctor who handed me exercise sheets, even though (perhaps especially because) she admitted there were things on there I wouldn't be able to do.
Stephen's Dad has arthritis in his spine, and was recently sent to a "Back School", an exercise in delaying the waiting lists for physio. A group of people with chronic moderate to severe back problems sat around while they were told how to sit up properly and offered free gym membership. I mean, gym membership, without any medical advice, for someone with arthritis in their spine?
(Sorry for the ramble, but this is quite a bugbear.)
I have felt over the years that doctors have just thrown a pain prescription at me without talking about HOW the pain feels. I think if I'd had a doctor ask me that question I would have been offered Gabapentin years ago. They would have understood it was nerve and tissue damage and that giving me the type of medication that helps with that type of pain would have resulted in many years of reduced pain, instead of extremely bad pain.
ReplyDeleteI had a great GP visit once where the doctor asked me what I wanted. He recognised that I knew enough about my condition and my medication to be able to join in the conversation. It was a short and too the point visit with open discussion that resulted in me leaving the surgery with exactly what I wanted. I wish it weren't so hard to see the same doctor more than once in my practice.
Excellent post!! Am bookmarking for future reference. I couldn't agree with you more. As a chronic pain sufferer I almost always feel defensive and on guard when talking to Dr's. Thank you for your candour.
ReplyDeleteAbsolutely this. I have a great GP who isn't afraid to "look stuff up" or go and talk to a colleague before making a decision about big things. We have intelligent discussions about what she is and isn't allowed to do and what she can if she overrides the computer for specific reasons.
ReplyDeleteIt is because we've had intelligent discussions about drugs and what I use them for and why that I'm allowed one NSAID they're supposed to be cutting down on for some risk stuff. The way I use it is probably low/no risk and the alternatives don't work or trigger off one of my other issues so I can't/won't use them most of the time.
It's about being believed and having someone acknowledge I'm treading a fine line of pain management (and other bodily nonsense) and I really do know my stuff.
@ The Goldfish : Yes, exercise is something I've been vaguely advised to do in the past. Weight loss is similar I think - e.g. 'your knees would hurt less if you lost some weight'. For one, weight loss doesn't happen over night so I'll have some painkillers in the meantime, thanks, and for another, even if weight loss was actually a solution (which I don't for many reasons), it is something that people who can move without hindrance struggle with, let alone those of us with a mobility impairment.
ReplyDeleteI had a great example of how not to do it recently, followed by an example of how it should be done, I blogged about both at http://davidg-flatout.blogspot.co.uk/2012/09/frankly-scared.html and http://davidg-flatout.blogspot.co.uk/2012/09/slightly-reassured-but.html
ReplyDeleteMy big recommendation to a doctor in how to talk to me, or anyone else, would be 'know your topic, and know the patient's situation', because I'm really not impressed when a doctor states I have a diagnosis we dismissed the better part of a decade ago, or a consultant assumes I'm a new patient when I'm seeing him for the second time (and what on earth is the point of reading out the referral letter to me? I arranged the referral with my GP, that's a pretty strong hint I already know what it says). There's also a flipside in talking to a patient, you won't learn anything unless you actually shut up at some point and let them talk - this has been a major problem for every referral I'd had to rheumatologists and orthopods, chronic pain were thankfully an exception to the rule.
Oh, and the other recommendation to doctors, whatever the topic, don't assume you're the smartest person in the room!
There's some fantastic advice in this post. Extremely useful for anyone who's suffering from issues with chronic pain.
ReplyDeleteKeep up the good work.
Best wishes, Alex