All too often as Spoonies we are asked the dreaded question: ‘How much does it hurt on a scale of 1 – 10?’. To people who have only ever suffered acute pain this may seem simple enough. Paper cut? 1. Wasp sting? 4. Broken arm? 8. Stubbed toe? 208. But for Spoonies with chronic pain it is not that easy. For one thing we may have multiple, overlapping pains. I have chronic pain in my feet, my hip, my wrists, my arms, my shoulders, my head and my face. Which pain am I rating? My hip could be at a 9 but my headaches at a 2. Or my wrists could be a 7 but my arms a 10. How do I rate that? And giving an overall rating for all the pain is misleading, saying I’m a 6 overall that day might be downplaying some very serious pain that is balanced by everything else behaving itself quite nicely (for a change). Another problem is that pain is not just one symptom dealt with on it’s own, it not only feeds on but also feeds into other symptoms such as fatigue or depression. This is something the EPP call the symptom cycle.* This means that one day your pain might be at a 5 but you are held back by it more because your depression is currently bad or one day the pain could be at a 9 but you cope with it well because something great is happening in your life. What really needs to be examined is the impact the pain has on your life.
I recently read about a new quiz that can be used to score how much impact your pain has had over a week. This helps you measure not the level of the pain itself but how it affected your life, which is arguably more important. The best part of this quiz for me is you could substitute any symptom into it and it would still be a valid measurement. You could even do it for each major symptom individually.
So why should we be keeping track of our symptoms like this? Well, if we don’t, who will? We can’t roll up to the doctors surgery and expect them to know how much your conditions are affecting your life, we have to tell them. If the appointment falls on a good day then chances are we will down play because we happen to feel good at that point. If it’s on a bad day we will tell them everything is awful all the time (we’ve all had those days) and they may be inclined to think we’re a hyperbolic hypochondriac. (I could not resist that alliteration.) Pain/fatigue/mood diaries are a great tool to show medical professionals not only how we feel but that we are actively managing our conditions. In the UK especially there is a growing emphasis on helping those who help themselves and this is a simple way to show you are on top of your own condition. Plus, you would e surprised what you learn. As part of some work I did with the NHS I kept a food diary for a week and when I compared this to my pain diary I noticed a direct correlation between how much pain I was in and how much I ate.
Do you keep any symptom diaries? What methods do you prefer?
*This website this government site links to has no relation to the EPP, apparently they can’t treat the NHS or their websites right! You can ask your GP about a referral to a service in your area.