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Symptom diary

Discussion in 'Lifestyle Management' started by Emsho, Jul 28, 2018.

  1. Emsho

    Emsho Established Member (Voting Rights)

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    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: Jul 28, 2018
  2. JaimeS

    JaimeS Senior Member (Voting Rights)

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    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)
     
  3. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Also, I think for posts you may need to separate hashtags w/a comma to make them show up as different things :)
     
  4. Emsho

    Emsho Established Member (Voting Rights)

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    Hadn't realised there might be apps for this sort of thing, thank you for the recommendation!

    Oops! Have edited :laugh:.
     
    adambeyoncelowe, MEMarge and JaimeS like this.
  5. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    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.
     
  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    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.
     
  7. Emsho

    Emsho Established Member (Voting Rights)

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  8. theJOYdecision

    theJOYdecision Senior Member (Voting Rights)

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    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.
     
    MEMarge likes this.
  9. hellytheelephant

    hellytheelephant Senior Member (Voting Rights)

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    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.
     
    MEMarge and Trish like this.

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