I’ve always been quite negative about the idea of keeping a pain diary because it makes me to focus on pain I’d rather do my best to ignore. I can’t really but I keep my conscious focus on what I’m doing and try to bury the creative similes to describe what I’m feeling. I don’t want to checklist all the various bits of my body to identify each part that hurts and label the type and level of pain. I don’t think we should be too focused on the pain but that’s not to say I’m a shining example of how to manage chronic pain because I tend to shove the awareness of it to one side and overdo things.
Sometimes it’s important to keep a record though. When new problems start or old ones worsen, it’s important to work out exactly what hurts, what exacerbates it and what eases it. Anyone with chronic pain will always be asked to fill in a pain questionnaire by doctors in the diagnostic and post-procedure/surgery phase. Some women may also want to track hormonal variations from month to month for a little while in case there’s a pattern (it’s very common for perception of pain to increase around your period but I’m a bit more prone to joint instability for a few days each month too – seeing patterns prevents the worry that something new might be happening). Trying a new treatment or being put on new medication can be a reason to track both the pain and other issues – throughout the 18 months I was on pregabalin because a well meaning consultant thought “if all else fails it’s fibro” (in fairness to him, what the hell was the health insurer thinking when it sent me to a knee expert??) I had a host of near daily symptoms like blurred vision, slurred speech, mixing up my words, an odd kind of brain stutter and fatigue which turned out to be “silent” migraines being triggered so frequently by the drug (which did nothing for the pain). It can also be important to keep records if you’re in a dispute over your condition with employers, insurers or the DWP. I didn’t share the records but they helped me to be clearer in what I was saying.
There’s also an argument there that if you’re bad at remembering to take rest breaks and change position, consciously tuning into the pain for the diary helps with that. I’m like that. I wouldn’t recommend much about the way I work but I do have one bit of advice for office types with similar problems to mine. Don’t have a printer in your office. Seriously. If you have to collect printed emails from a communal printer regularly, you’re giving your back a series of mini breaks it might not get otherwise.
I’m one of those people who lets emails about admin tasks at work gather dust while I focus on things I find more interesting and more important so the admin involved in recording my pain seems like too much hassle. But there’s an app for everything. I found a flexible app (Manage My Pain) which allowed me to list all the weird symptoms and input my own range of descriptive terms. I could also add my own exacerbating and alleviating list, which was really handy. To make life easier, if one day’s problems are much like the next, there’s even a repeat button on the app. The app also generates professional looking reports from the data inputted if you need them. If you might show the data to anyone, I’d say to be careful about descriptive terms though because they’re taken into account by doctors and assessors, who might see psychosocial problems if your descriptive terms are too inventive. One of mine was that it felt like broken glass was being ground into my spine but fortunately I eventually found the right doctor, who rid me of that one by killing the nerves to the joints (although I didn’t use that description, even though it was most accurate way I had of describing the pain to him). That highlights another advantage to periodically keeping a pain diary. By paying attention to the different types of pain I could see past all the surrounding muscle pain to be able to confidently tell him I was sure that the joints were damaged so I was able to separate out and treat one of several problems. In my case, that made an enormous difference to my overall wellbeing.
After playing with the free version (which limits you to reports on the ten most recent entries – not much use if you make multiple entries to reflect different types of pain in different parts of the body and non-pain events), I decided it was worth the £3 to download it. The fact that using an app feels cooler (and has a familiar time recording style feel to my solicitor brain) made the whole thing seem like less of a hassle.
If you’re diagnosed, have stable symptoms and a stable drug regime, I don’t personally see much point in keeping a pain diary. Once you know your limits and what it takes to minimise the pain, it’s just a case of living with them for me but if you’re going to use one, I’d recommend an app. I haven’t updated the one I used lately so I don’t know if it’s developed any niggles but it’s definitely worth giving the free version a go.