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Recording symptoms: What do you keep track of and how do you measure trends ?

Discussion in 'General Symptoms' started by xena, Apr 2, 2015.

  1. xena

    xena Senior Member

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    Hi everyone, looking for some advice on how to better record reactions to medication/general trends in symptoms.

    I currently write down new/exacerbated or improved symptoms in a diary as well as the start/end dates of new supplements or meds. And changes marked changes in sleep, energy, mood...

    However none of this is organized, which makes my recordings sort of inconsistent and quite hard to see changes clearly over time.

    So how do you all do it?

    Some specifics Qs:

    1) What kind of things have you found it useful to track (AHI on your CPAP? Steps walked? Heart rates? Hours of sleep?)

    2) If you have, do you find it useful to track energy and mood on some kind of scale (1-5 or something) versus assessing whether it's better or worse more loosely?

    3)Have you found any useful apps, websites, or technology for tracking symptoms and start and end dates of new meds? Or have paper journals/charts been more useful to you?

    I have been thinking making a google form to fill in at some point each day and then having that form collect data in a spreadsheet, hopefully allowing me to visualize trends by graphing it after a while.
     
  2. *GG*

    *GG* Senior Member

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  3. halcyon

    halcyon Senior Member

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    I've started using a Fitbit Flex for tracking activity and sleep. It's not perfect but it works pretty good. It's amusing that most people buy these to increase their activity, while I use it to make sure I'm not too active.

    This is similar to what I do, though I just enter data directly in an Excel spreadsheet. I rate the severity of each symptom from 0-10 each day and add each up to get an overall score for the day. I also track morning and high body temperature, any transient symptoms, and note when I start, increase, or stop taking things. It's not the most elegant solution, but it seems to work pretty good.
     
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  4. Hip

    Hip Senior Member

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    These are very good questions, xena. It's good to see someone who wants to get organized in terms of testing the effects of drugs and supplements.

    The system I use is very simple, and is described in my post here.

    Basically I just record any drug, supplement or therapy I take in a simple word processor document, along with the dosage taken, and the date.

    I have found my notes invaluable.


    In terms of things I found useful to track, generally it is the unusual things that crop up which I find the most telling, and I tend to write any usual events down in my word processor document (in the results column).

    For example, if on one week I was able to do a complex task that normally my brain fog would prevent me from doing, I will write that down. Then I might look at what supplements and drugs I was taking that week, and perhaps on the weeks just before it, and see if there is anything I took that might explain why my brain fog got better.

    By using my notes in this way, I have been able to identify several medications that are generally helpful for my ME/CFS and associated conditions.


    I originally started doing this using pencil and paper in a diary, but then switched to a word processor because it is faster (especially when you copy and paste things), and moreover, because you can search your word processor document, which makes it easy to find things in your notes archives.
     
    Last edited: Apr 4, 2015
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  5. xena

    xena Senior Member

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    thank you all for the advice and suggestions... i feel a bit more motivated/less confused about how to go about doing this

    ps @ggingues haha i love your icon photo. very funny, very true.
     
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  6. *GG*

    *GG* Senior Member

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    Thanks :)
     
  7. Bob

    Bob

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    I've attached a low-tech symptoms chart that I created for my own use. I've found it invaluable at times, to help me understand and monitor my illness. You have to print it out to use it. I've attached an image file and a PDF. The PDF is better for printing.

    symptoms chart.jpg
     

    Attached Files:

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  8. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    @xena You can give your own scales (1 - 5),for your energy or your symptoms. Do this every day. Write down your descriptions of these levels. You will get a feel for it in a month or so.

    If anything improves in our illness, the changes will be small, so you will see them in the scale numbers, or the number of days it lasts.

    Also, write if anything unusual happens to you, like any increased activity or increased fatty foods, etc.

    It's very, very complex trying to see any patterns, but hopefully luck is on your side to enable you to see these.

    I track these on a monthly calendar, and write more notes in my journal if needed.
     
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  9. yabby02

    yabby02

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    so far, I've simply kept track of everything on the calendar on my phone ... I will use #health before an entry so it's easier to find. Then before a doctor's apt I'll type everything down and print it out. Seems to work ok, but re-typing it all out for the doctor is rather time consuming.
     
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  10. Lacey

    Lacey

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    I use an app on my phone for my period cycle to write down what's going on for the day (as it has tons of room to write up notes). It's called Period Diary Pro. I looked around a bit to find one that works for me (space to write stuff). Would be better if we could type in our own symptoms for the chart function it has though.
     
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  11. cigana

    cigana Senior Member

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    Try the healclick website - it was basically made to allow people with MECFS track their symptoms...
    https://www.healclick.com/
     
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  12. mojoey

    mojoey Senior Member

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    There are various ways to track, and nothing beats the simplicity of a google doc, but visualizing tons of symptoms and treatments together is a harder problem to crack.

    To make things easier, we developed a simple, beautiful way of visualizing your symptoms, treatments, events, and other biometrics like labs & wearable data. Check us out at www.healclick.com/tracker and let me know what you think!
     
    Last edited: Jun 2, 2015
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  13. Denise

    Denise Senior Member

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    If privacy and ownership of data is a concern of yours remember to read and understand the site's Terms and Conditions as well as the Privacy Policy.

    Don't hesitate to ask sites for clarification where needed.
     
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  14. mojoey

    mojoey Senior Member

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    Glad you think so! Given the multisystemic, relapsing/remitting nature of the disease, I've found that none of the trackers out there with presets really accommodate it.
     

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