Posts Tagged ‘chronic pain’

13 things you don’t say to someone with chronic pain…

November 13, 2009 Leave a comment

Some Mp3’s and worksheets for downloading

One of my personal favourites from one of their line is the “13 Things You Don’t Say to Someone with Chronic Pain” quote.

1. You don’t look sick.
2. Maybe if you just got out more.
3. You can learn to live with it.
4. You just have to tough it out.
5. It’s all in your head.
6. You’re just having a bad day.
7. This will pass.
8. Just get more exercise.
9. It can’t be that bad.
10. It must be neat not to work.
11. Just be more positive.
12. It could be worse.
13. There’s people worse off than you .


Chronic Pain

November 13, 2009 3 comments


I found this article interesting

Chronic pain comes with a whole lot of misinformation that most other illnesses don’t have. Unlike diabetes or emphysema, people with chronic pain have usually spent a long time searching for a diagnosis, and have usually seen multiple health providers all with various names for what the person has, and promising some sort of cure.  Even for something as clear-cut as ankylosing spondylitis, it takes around 4 years from initial symptoms to eventual diagnosis and management.  This means that most people with chronic pain will have had a long time with hopes raised then dashed with each ‘cure’, lots of time feeling unrecognised and often mislabelled as ‘noncopers’ or perhaps even ‘malingerers’, and plenty of apprehension that every time they move they may be ‘causing more damage’.

As a result of both of these, people with chronic pain seek many ways to self medicate. So they may smoke cigarettes, drink alcohol, take medications (either prescribed or over-the-counter), and spend loads of money on ineffective gadgets like magnetic bracelets and massaging cushions and ‘energy treatments’.  While the latter may not harm the person, they cost a lot both financially and emotionally, and the former have serious health effects.

Managing chronic pain means changing beliefs and behaviours across every part of life. Unlike taking medications, or changing diet, chronic pain management involves self regulating thoughts, changing expectations, adjusting goals, modifying activity patterns, expressing to others why things are being done differently.  Constantly reviewing how much energy is available against what needs to be done, because ‘overdoing it’ has such a high physical and emotional cost.


Relapse is normal, flare-ups inevitable and both can happen for no apparent reason. And both of these events can start the whole process of investigation, diagnosis, treatment and more treatment.  Or cause the person to doubt that they have the determination to carry on, or that what they’re doing is the ‘right thing to do’.

I wish this bit about relapse wasn’t true….

It risks labelling the person as being the problem rather than the pain because ‘they didn’t get better’, or ‘they’re never satisfied’.

So where does all this leave me?

I think this post makes me thing about the wider issues of pain managment, the fact there is no one size fits all.  No magic system of goals or targets or thinking that will “cure” me. Techniques that work at one time may not work at another.

I also realise that it is up to me to find a strategy that works in my life, but if I can do this using an “evidence” based approach and learn from others this has to be a good thing. But what strategy?  Do I have one? How do I develop one? What things are currently holding me back?  Should I be doing more? or less?

This idea seems workable:

Recently I’ve used a ‘Plan to do’ and ‘Did do’ diary where people plan their day’s activities, then record what they actually did.  This provides immediate feedback on progress – and successfully achieving what was planned, no matter how low the level of activity, provides a sense of accomplishment and becomes reinforcing.

Dobkin’s answer is that these studies remind us of ‘the two faces of medicine’ – curing and healing.  Bone loss, joint damage and C-reactive protein reflect what the medics seek to ‘cure’, while effective coping, improvements in disability and mood, anxiety and social support are all ‘in the domain of healing’.  She points out that the research process requires these to be pulled apart into small pieces that we can define and measure and investigate, but in fact they all belong to the whole person who looks for treatment and to be understood.

I hate that term “healing”, it’s so new agey and banded about all the time by snake oil sales men trying to “balance my energy” / “align my charkas”/ and who assure me I’ll live forever if only I eat a “vegan, organic, taste free diet”. I don’t think that is what is meant in this context but the term “healing” is so nebulous can it really be pinned down?