Keeping a log of your sickle cell pain

The Benefits of Keeping A Pain Diary | Sickle Cell Diaries

Keeping a log of your sickle cell pain

Over the past 7 months, I’ve maintained a full-time job assignment that required me to travel by train 5-days a week. To most people this is normal, but for a sickle cell sufferer, it can be a nightmare.

I was constantly aching, and I was always tired. The worst part was that I stopped taking painkillers to manage my pain because they would make me too drowsy at work and have me on the brink of falling asleep.

Back in March I had an appointment with my consultant at the Hospital and told him all about my difficulties. He encouraged me to take my painkillers when I need them regardless of my worry about falling asleep. He then suggested that I start to keep a pain diary so that I will be able to see a pattern of when my pain is most frequent. This would then help me with my pain management, and allow me to better decide when to take my painkillers when it won’t affect my work.

Since then I have been keeping a digital pain log that I can easily update whenever I feel sickle cell related aches and pains. For reference, I also include which limbs the pain occurred, the time of day, the severity, and the treatment I have taken to try and fight it.

A look at my pain diary

Keeping this diary was a big help when it came to my next appointment with my consultant, as he was able to assess whether I may need a new type of treatment. He indeed prescribed me something a little stronger for when the pains are at their most severe.

Because I’m also on Warfarin (due to my bloodclot last year) I also record when all of my Warfarin clinic blood tests happen and the dose that I get changed to. I use a separate table to record this, but it has also proved helpful for my catch-up appointments with my consultant.

Why you should also keep a pain diary

This isn’t something you have to wait for your doctor or consultant to ask for. I encourage all Sickle Cell sufferers (or even those suffering from another medical condition) to keep a log of their pains and treatments.

Doing this will give you a quick and easy reference when you need to assess your pain management. Your doctors will be able to tell if they need to adjust the strength or dose of your medication, and in my case, I’ll now know when the best times to take my painkillers are so that they don’t interfere with my life.

Doctors can also make sure that your medication is being taken appropriately. Of course, if you have a strict time for when you need to take your medicine it may also help to log in the times that you take them. Currently, my medication routine is second nature, so for this diary specifically, I didn’t feel the need to log in my times. Also, as it’s just meant to record my pain management, I haven’t included the other medications that I take, such as Folic Acid and Penicillin. If this is something you require then I suggest amending the template that I have provided below so that it will fulfil your needs.

Download My Pain Diary Template

To help you get started with your own pain tracker, I’ve put up a template you can use. You’re free to amend it in any way that suits your needs.

For pain severity, I have amended it so that you can score your pain from 1-5. In my original diary, I didn’t use the scoring system, but for Sickle Cell this is likely the most recognised way to report how bad your pain is.

Download it right here

Be sure to let me know if you keep your own pain diary and how it has helped you.

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