Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Monitoring symptoms

Discussion in 'General ME/CFS Discussion' started by Ellie K, Oct 12, 2016.

  1. Ellie K

    Ellie K

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    Does anyone have a good way to monitor symptoms? I have tried some things like a diary and various apps, but I always find that I can't stick to them when I am tired. Does anyone have a system that works (preferably one that lends itself to easy statistical analyses)?
     
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  2. belize44

    belize44 Senior Member

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    I'd be interested to know a system, also!
     
  3. Ellie K

    Ellie K

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    Since asking, I've done some more digging. I think I will try chronic-illness.com which seems nice because it lets you put in your own symptoms to track. My only concern is it might be slightly clunky to use, but I'll give it a go :)
     
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  4. Webdog

    Webdog Senior Member

    I downloaded an app called Flaredown Symptom Tracker, but haven't used it yet. It might meet your needs.

    http://flaredown.com/
     
  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Which symptoms are you most interested in monitoring? Insomnia, pain, fever, or what?

    Some symptoms lend themselves to objective tracking, such as use of pain medication for documenting pain flares; sleep diaries monitor insomnia. Activity can be tracked by how much time you spend sitting/standing/reclining.
     
  6. MastBCrazy

    MastBCrazy

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    I have used two things:

    1)a spreadsheet (date on top of column and symptoms+triggers down the rows) - worked once I got into the habit. In my fog, I often used text/descriptions, but I recommend using a number scale. It helped to group symptoms by type
    Physical-motor{fatigue/ataxia/tremor/fascilations/etc}/pain {headackes/soar throat/flulike symtoms/swollen lymph nodes/tender lymph nodes/joint/nerve/muscle} /autonomic {OI/temp instability/palpatations} /gastrourinary {constipation/weak urine stream/urinary urgency} /sensory {sensitivity/visual disturbances/reduced sensation/paresthesia/etc}, sleep {time restful/time restless/quality/cycle shift} , cognitive-mental fatigue/concentration/word retreival/slow thinking/memory recall/memory storage/etc, emotional-stress/agitation/etc, environmental triggers-foods/smoke/mold/temperature, Activity (steps, activity time, , Comments)
    This has been my preferred (may be my love of spreadsheets...) but gives me the most flexibility and I find it easiest to scan as I have had various clusters of symptoms come and subside over time, so visually, it has worked the best for me.

    2) HealClick (aka MyPatientMatch). You can track as many or as few symptoms as you want on a 1-5 scale if I recall and export to a spreadsheet or it will graph. You can also track treatments (y/n) and the system will (used to) email you daily reminders that it is time to track.
     
  7. taniaaust1

    taniaaust1 Senior Member

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    i find it very tiring to monitor symptoms long term so when Im monitering I usually only monitor for a few days to a week in every month if things are changing a lot or for a week every few months (havent done it recently but its what i used to do). Thats usually enough if done long term to compare.

    I'll do this by printing out something like Katrina Berne 's list of CFS symptoms and then marking the ones I can remember having very recently (say maybe in past couple of weeks). then I rate the ones Ive had in past few days out of 10. If you dont rate out of 10 it can be hard to compare how one individual symptom is now to how it may of been a year back.
     
  8. MastBCrazy

    MastBCrazy

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    I wouldn't be able to remember what yesterday was like. I do well to recall the morning.
     
  9. purrsian

    purrsian Senior Member

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    I have downloaded both of these apps as I wasn't sure which to use. Both have their pros and cons. Here's my view of them so far, so it might help you figure out what's best for you. I have only been using these since yesterday, but both are pretty easy to understand.

    I think I'm going to go with Chronic Illness Assistant, mainly so I can track symptoms throughout the day rather than just once. You can also have "always" recorded symptoms to rate every check-in, as well as "sometimes" recorded symptoms to add as you experience them, which keeps things less cluttered since we tend to have so many random symptoms.

    If you're easily overwhelmed or just want something more simple and easy to use each day, Flaredown may be better. It has fewer options, but a more streamlined, simple experience that's super easy to complete.
     
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  10. RogerBlack

    RogerBlack Senior Member

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    I am attempting to work out simple tests I can do multiple times a day.
    For example, a recent paper measured that one-handed grip strength took more than an hour to recover in CFS patients after a challenge of 18 maximal strength grips.
    I have just ordered a grip strength checker - and am going to see if single maximal grip is a useful daily measure.
    'wobblyness' is another thing I've seen - measuring how steady you are when standing.

    A Wii balance board can do this - with additional software - and if setup right in principle may give me a reading every time i get a cup of coffee.
    What I'd really like is a time of flight mass spectrometer with protein analysis - but this is $300K, not $30, so I'll try the balance board.
     

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