The importance of keeping a pain diary

My endometriosis pain in December 2014.

The New Year is a great time to get into the habit of keeping a pain diary.

It’s sometimes very hard to talk about pain, and people don’t always want to listen. However pain diaries are great because they make your pain very visible to people that have no idea how much pain you’re in. Since we have invisible chronic illnesses any way you can make your pain more prominent to others is a good thing.

It’s not just an box ticking exercise for your doctor. Pain diaries are a huge part of the reason I am able to manage with pain. I log the pain, and then I can relax and move on.

Plus I’m convinced the only reason I got my third laparoscopy this year because I was able to show my (year long) pain diary to my consultant. He saw how progressed and extensive my pain was and agreed to operate on me. No ifs no buts.

Pain diaries don’t take ages to put together, and once you get into the habit you’ll realise the benefits. The biggest of which is your own self compiled evidence on your pain experience that is very hard for others to deny.

It’s easy to do

I’m frequently shocked by how few people with chronic pain do not regular keep a pain diary. It’s an extremely crucial tool for managing and monitoring pain and it enables you to report on how your pain is progressing.

So I’ll start off by sharing some facts

  • It doesn’t take long
  • It costs very little
  • It provides a factual report for you and your doctors to spot patterns
  • It improves your access to pain management and treatment

It’s a no brainer really. I’d like to talk you through how a pain diary can work, how to get started and some of the things you can learn from yours.

Why pain diaries are important

Pain is a deeply emotive experience, but in my experience emotions do not always help you when it comes to getting treatment. Doctors see pain every day, and they have to keep themselves somewhat distanced from it in order to remain professional. So while emotions may not always help you in a consultation hard evidence does.

This is because doctors develop a picture of how you’re doing based on what you tell them and how you impart this information. If it’s filled with unknowns, gaps in your memory, or if you contradict yourself without meaning to (which are all easily done when you’re in pain) it’s so much harder for them to put a finger on what’s wrong. Our illnesses symptoms actually make it harder for doctors and other professionals to help. It’s perverse but it’s so often true.

If you take the time to log your pain and develop a picture of what your pain and other symptoms look like not just daily, but weekly, monthly and yearly, it’s far easier for a doctor or consultant to focus on what’s causing your quality of life to reduce.

For me it’s often meant the difference between getting the treatment I needed immediately and waiting months while your consultant asks you to complete one for a few months to help them out.

Doctors can be impressed by patients that are prepared enough to help them out in this way – because that’s what you’re doing. Working with your health professional to get where you need to be. It feels like a shortcut or skipping a line, and the best thing is everyone can do it.

I’ve heard some people (pain consultants among them) say that pain diaries make you focus on your pain too much and can be negative. I don’t entirely agree with this view. Firstly it’s usually stated by people that do not actually have long term pain themselves (and are in my view not in a good position to judge those of us that are). Secondly our pain is real, and ignoring it isn’t a pragmatic choice either.

I’d equate it to tending your physical health like you might do with your mental health and a diary. Sometimes it’s better to admit the pain exists, write it down and move on, better that then bottling it up and volcanoing your emotion later. Besides, pain diaries can be completely private and no one has to see it but you if that’s what you want.

My pain diary

Now I’ve developed my pain diary into a habit, I log every aspect of my health. Every twinge of pain, every sniffle and every fatigue day.

So here’s my last year of endometriosis pain. It’s not pretty but pain seldom is. Hopefully you can tell when I had my third laparoscopy.

My endometriosis pain in 2014.

My endometriosis pain in 2014. Click to see it in full if you want.

This isn’t all the pain I feel – this is just the typical endometriosis pelvic pain. I also track my chest pain, my joint pain, my fatigue and all my colds and other illnesses. I can report on my pain very quickly and easily now.

Developing a pain diary habit

Your diary doesn’t have to be as fully-featured as mine, but the point stands. Being able to show off how my pain looks over time is really powerful, and it all takes less than 5 minutes a day of my time.

And if you haven’t been keen on doing a pain diary before, you’re probably carrying around something that will make it really, really easy to do: your smart phone.

There are so many apps that you can use to do this, and they vary from being free, to having a small cost, but for less than a price of an expensive cup of coffee you can start to graph your pain, and that in turn may help you manage it better.

The basic things you’ll want to do are:

  • Record where your pain is
  • Record how severe it is

But it’s also cool to:

  • Say how the pain started
  • Understand what helped
  • Log different types of pain and symptoms
  • Celebrate pain free days

How recording your pain works

Most apps will ask you to rate your pain on a scale (say one to ten) and/or represent the pain with a colour. For example white is pain free, green is low pain, yellow is medium pain and red is intense pain.

Here’s a pain scale to help you out:

pain-scale-part-1pain-scale-part-2

Pain is subjective so you’ll get used to rating your pain. The easiest rule of thumb is to consider what days are worst than others. If you’re rating everything as ten, then you can go no higher when your pain is worse. Be careful of rating your pain too highly, it’s not in your best interest.

You can get started by simply recognising that you’re in pain, and when it becomes uncomfortable log how much pain you’re in and where.

Over time it will become instinctive to associate pain with your pain diary. I make it a rule to log pain on my phone as soon as I notice it, no matter where I am. See I just did it now while I wrote this (it’s a 4/10 on my left side).

I even do it in work meetings, I take a moment to log my pain, and if you’re worried about people thinking you shouldn’t be playing with your phone and they point this out, point out that you’re logging your chronic pain in your pain diary. Few can argue with that.

I’ve often started a conversation about my pain when someone has seen all the reds and yellows on my phone screen. People are shocked when they realise how much pain you’re keeping quiet.

Suggested apps

I’m an iOS user so I can only suggest things for that the moment. If you have any apps that you’d like to recommend on any platform please share in the comments.

I use my pain diary, mainly because it allows me to record lots of different types of pain and report on them separately, it offers complete flexibility – but at a price of about £3.

If you wanted something simpler to start with Ake would be a nice one to try, it’s very easy on the eye and very simple, and it comes at a good price (free).

Flaredown & collaborative pain research

I recently backed a project called Flaredown on Indiegogo. Flaredown is probably where I’ll move my pain diary information in the future – it’s still in development, but the key difference with Flaredown is that it doesn’t just record your information in isolation, it will a enable others with similar illnesses to learn from your experiences to see what helps you and what might help others.

This collaborative method of sharing information about chronic illness is missing at the moment and I think projects like Flaredown are going to be a huge part of improving our symptoms in the future.

I’ll write a separate piece on Flaredown once I’ve used it.

Extra credit – making a positive diary too

If the process of logging your pain starts to make you feel down (because you can fully see the impact of pain on your life in the long term). How about creating a complimentary diary which contains all the nice things?

I take a picture every day with something nice that’s happened that day and combine it with my daily language study by trying to write about it in Japanese. It’s nice to look back on when the pain is unmanageable. I do this using Day one, but it could be done with anything really.

Making a start

Why not try starting a pain diary today for a easy (and quick) win for your health in the New Year. It really doesn’t matter how, once you’ve tried it you’re unlikely to look back 🙂

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

4 responses to “The importance of keeping a pain diary

  1. Thank you for posting this! I just downloaded the app and I’m starting my pain diary today. I’ve been reading your blog for about 6 months now, and I just wanted to say thank you and keep up the good work. It’s comforting to know there are other people who understand the day to day struggle of having endometriosis. Keep up the good work with the blog and Happy New Year!

  2. Hi Michelle,

    Happy New Year and thanks so much for this post on keeping a pain diary. I’ve been diligently keeping note of my symptoms and pain on paper since my first period in 2007, in the beginning encouraged by my Mum who has also gone through Endo. It has been difficult to relay how bad things have been to doctors, especially this year, so I’ve usually typed up a summary to give them to help get their head around things. This does help and they usually are quite surprised at how much info I’ve prepared in advance!

    Never occurred to me that there might be an app for documenting my pain though. Yay! I have now downloaded a couple to try out. I’m on Android and currently trying out a free app called Catch My Pain, so I’ll see how it goes.

    Thanks again for this post – another really useful tool for us Endo girls ☺

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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