Symptom diary

E

Emsho

Established Member (Voting Rights)
Any ideas on the best format/method for keeping track of symptoms?

Inspired by a post by @JaimeS about the need to keep a symptom diary, realise
need to keep better track of my symptoms to know what's helping or not!

How do you record and measure your symptoms and changes?

Any ideas for categories? Do you use a spreadsheet or write a journal?

Any advice/tips would be really useful!
 
Last edited:
Hi, @Emsho!

For a long time I used an app. I didn't use it every day, but I did use it to keep track of unusual symptoms. It allowed me to enter symptoms too, so 'Air Hunger' (which was a primary one at the time) I created. It wasn't a yes/no, either; you could say 'very low', 'low', medium', 'high', and 'very high'. And you could track over time.

There was also a way to input text/comment each day, so I did that too.

It allowed me to figure out what triggered air hunger and a few other useful things. I definitely recommend.

Here's an example of what I mean: http://flaredown.com/ (specifically for chronic illness)
 
66288540-A084-46C8-AAC0-2F20EEA368E2.png

I use an ap for my iPhone called T2 mood tracker

Don’t be put off by the title ...it was originally developed to track mood after brain injury but the app allows you to fully customise your symptoms with sliding scales. I don’t use any of the preset ones. You can also group symptoms under one header symptom ...like cognition (see example above)


The app graphs symptoms as you go so you can look at what your symptoms were over different time periods up to a year. You can also add notes.

The above is an example.

I’ve been using it for a few years and over that time I’ve tweaked the symptoms I track based on correlations I’ve noticed. For me I track

Heart palpitations
PEM
Muscle weakness
Cognition
GI symptoms
Mouth ulcers (that’s mainly because I have a folate problem)
Infections
Allergy/histamine symptoms
Pain
Temperature control

Beneath these are sub symptoms so allergy would have hives, wheezy, itchy eyes...it then averages these and graphs the summary of those symptoms or you can look at them graphed individually/. I fill it in at the end of the day and it takes me less than a minute to do since even for the cognitively challenged (me most evenings) it’s quite straightforward.


It now can sync with Fitbit so you can view steps alongside the symptoms which helps ....I believe it comes in apple or android versions.

This is my second most useful app on my phone for pacing/working out triggers/clusters of symptoms.

I’m sure other apps are available ...I just have stuck with this one because it works for me.
 
My daughter uses daylio app - less complex than flaredown and easier for her to manage.
She sets her own symptoms and also achievements ( like having a shower) which can make ie easier to track back for PEM causes .
It is basically a mood app that you can customize with a broad sprinkling of emojis - so perhaps aimed at younger group. It is simple and easy to read, but not the most scientific thing.

Also uses a Fitbit type device for sleep and heart which we are still getting used to.
 
Yay! I’m going to look at these suggestions too. I feel like I am overlooking a number of symptoms because I’m being hit over the head by hard-to-ignore ones. Or I erroneously lump symptoms together (ie as brain fatigue or exhaustion) when it would be more helpful to separate them. If anyone has any updated apps, spreadsheets, recommendations etc they use I would love to hear.
 
I do a daily symptoms diary with pen and paper. I record Energy and Pain scores morning and afternoon, and I also write down any big activities, and what time I take pain medication and how much of my asthma sprays I take. Any new meds/supplements etc are also written down.
At the end of the month I transfer to an A4 book so I can view the month over all- for me that is less tiring than a spreadsheet.

It has proved invaluable to have an accurate record over time, particularly when I see the GP.
 
I've been using Flaredown for nearly two years, but haven't been able to log symptoms for a few days, or access the account through their webpage. Are there any other Flaredown users on here and are you having the same issues?
 
Going to answer my own question, in case it's of use to anyone else (not due to being slightly bonkers and sitting in the corner talking to myself :wtf:).

I emailed the owner, who said he's had to take it off line after the service provider migrated to new servers and (despite being told otherwise) the software won't work on the new ones. The software requires some changes and it would cost too much to get developers to do so. They're obviously quite disappointed. as am I, but for something that was free it's hard to complain! Now the hunt starts for something new...
 
You must log in or register to reply here.
Back
Top Bottom