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How do you track symptoms and influencers of symptoms?

Discussion in 'General ME/CFS Discussion' started by Never Give Up, Mar 11, 2015.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I suspect that tracking symptoms, activities, environmental factors, etc. would reveal much useful information. Like what triggers night time awakenings with intense nausea and headaches, how long does PEM last, and what factors contribute to how long it lasts.

    What should we track? What tracking systems work for you? How do you do it?
     
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  2. GracieJ

    GracieJ Senior Member

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    I once used an Excel spreadsheet with dozens of variables to track symptoms. (2004) It became so detailed it was hard to keep to one sheet of paper for the graphs. My doctor looked it over and commented, "This is what my cancer patients do."

    It was work but worth it. I noted how I felt emotionally, physically, mentally. My temperature, any dizziness or nausea, phases of the moon :rolleyes: (just kidding), phases of my cycle, the weather, the season, anything emotional going on, anything I was experiencing, everything I ate, all meds, herbs, etc.

    I didn't know about PEM's relationship to heart rate and pacing. That would have been interesting to track and see how it all tied together. I did discover better where PEM was being triggered and was able to slow down.
     
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  3. ahmo

    ahmo Senior Member

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    I keep pretty close track of everything: symptoms, supps, activity, mood. But I haven't been able to go beyond scribbling in notebooks. Even my attempts to organize this by making columns never continues. Just my scribbles, which I can review, but only tend to at long intervals, to make note of significant shifts. Here's a selection of charts, which I've never really even checked out: https://www.chartmyself.com/
     
  4. South

    South Senior Member

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    Some of my health symptoms are quickly influenced by certain supplements - I found this out by using something I'll call List A and List B. I don't have ME, but maybe this is useful.

    The first list - let's call it List A, sits on my kitchen counter, and it shows the names and doses per day of the supplements I'm experimenting with this month (as well as a few other supplements that I take all year). I use that list every day, to remember to take all the supplements on it that day.

    I use List A for about a month, then take a break. Then after a week or two break, I start a new List A, with a different mix of supplements on it that I want to try.

    The second list, List B, hangs on my refrigerator (handy but out of the way). List B is a "symptom tracking" list. It starts out mostly blank, and I note changes on it as time goes by that month.

    Ahead of time, I decide which symptoms to keep track of (advice: pick only a few symptoms to track each month). When starting a new blank List B, I write at the top what my current status is on the symptoms I'm going to track.

    As I progress through the weeks of using List A, if any of my tracked symptoms change, I'll write the following on List B:
    Date, the symptom that changed, and how it changed.

    The other thing I write on list B is if I forgot one of the supplements from List A one day, or if I ate something really unusual. For example, eating a complete sugar-bomb treat, a pretty rare treat for me, always causes symptom problems.

    Anyway, this method has helped me figure out my personal health reactions to some supplements that have been really useful to me, and some of which were quite unexpected. At the end of the month or so of doing List A and B, I staple them together, write any observations on them, and put them in a shoebox.

    Low tech, but works well for me.
     
    Last edited: Mar 11, 2015
  5. CantThink

    CantThink Senior Member

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    I had an app on my phone for tracking connections between food and/or meds and allergies or other symptoms. It was very handy though I don't use it now. Over time it would figure out the percentage probability of what was causing the issue (e.g. linked instances of a certain symptom to a specific food or med).
     
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  6. PennyIA

    PennyIA Senior Member

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    I used a spreadsheet as well... a column for every 'symptom' or 'treatment' or otherwise... a 0 was a good thing in the column... a 10 was 'worst case' for the column... a row per day and I could do running totals / averages for weeks or months - which gave me simpler graphing values.

    I found a hidden food trigger that caused delayed bowel issues. I discovered supplements that I didn't think were doing anything were causing mild improvement. And I identified a hidden irritant within a supplement ( I knew I couldn't take the irritant, didn't realize it was in the supplement until I connected the delayed reactions ). Even better it helped keep me on track for continuing to try new supplements because I wouldn't forget to add something new into the mix once a week.

    I haven't tracked things on it lately because it still had about 20 - 30 columns and I'd get to the point where I didn't want to keep track of it all. BUT... it was flexible as if I wanted to start tracking something new - I'd just add another column and give it a label. A group of columns for fatigue/energy; another group for types of pains; another for digestive issues; another for fog, irritability, etc; another for supplements and treatments. I could see if I was really religious about resting and taking it easy I saw improvements in energy - try to overdo it, boom - PEM showed up big time.

    I think it overwhelmed the couple of doctors I shared it with - but I think the right doctor would be able to see it for what it is, a way to try to quantify what I'm going through without letting it get distorted by brain fog.
     
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  7. halcyon

    halcyon Senior Member

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    Adding in another vote for the spreadsheet method. Using Excel, I track symptom severity each day, as well as temperature, and notes about overall condition, medication changes, activity, etc. I based it somewhat on @Patrick*'s example sheet.
     
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  8. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Do you recall the name of the app?
     
  9. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    We have used spread sheets before and stopped because there are so many variables, like general pain, abdominal pain, chest pain, head aches, nausea, numbness, SOB, heart rate, BP, temp, energy level, emotions, GI symptoms, cognitive function, insomnia, total hours of sleep, light sensitivity, noise sensitivity, food sensitivity, hand temp, foot temp, Temp perception, physical activity level, cognitive activity level, emotional activity level, what was eaten, the list goes on and on. Then, to account for all of the intra day ups and downs, we rated high, low, and average for each day, for each variable. It's just too, too much!

    Any suggestions on how to simplify this and keep it meaningful?

    I'd like to look at apps as they are portable and likely to include analysis. What apps are out there? What have you used? What did you like and dislike about them?
     
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  10. Richard7

    Richard7 Senior Member

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    For the last couple of years I have been making notes that made sense to me at the time in notebooks.they are often pretty hard to understand now. I also kept track of my food from time to time on a site called http://paleotrack.com which is probably best at providing evidence of when I was well enough to do it. I had to reconstruct my history in January using invoices to work out which supplements I was taking and so on. Since late january I have used a table in word (well libreoffice but its much the same thing) I make notes about my sleep, basal temperature, heart rate, the extent to which I am in ketosis (I am doing something like wahls paleo), how I feel, what my stools are like, what exercise I do (which might be doing the dishes, or walking to and from town, or nothing) and how it went, and take notes about which supplements I took when.

    All of this data could make more sense if I just used it like a diary, entering things as they happened, but I need a form that asks for my temperature and "how do you feel" for those days when I am not functioning well.

    I also keep a notebook and pen beside my bed so that I can record the temperature and heart rate and don't have to rely on my memory, I have enough trouble remembering what I have taken on the walk between the kitchen and the computer.

    The level of detail was in a sense set by my doctor, I kept a log for two weeks and then took it to him and asked if he needed me to add any fields, and he mentioned the temperature and heart rate.

    I had thought a cfs and migraine checklist might have been better, to remind me which events were important, but that might filter out an important symptom.

    I know that the supplement timeline that I made when providing him with a medical history has been useful in helping me to work out what happened or what might have happened in the periods I don't remember well enough.
     
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  11. Richard7

    Richard7 Senior Member

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    Oh and I should have mentioned that I chose a word processor table over a spreadsheet because it is more organic. I can write a two page entry for how I feel or just a couple of lines. And because it is easy to print out and give to my doctor.
     
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  12. CantThink

    CantThink Senior Member

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    You can download for android or iphone for a small cost.
     
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  13. CantThink

    CantThink Senior Member

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    I wanted to add - just thought about it -I like the app because it is portable and it is easy to access (I couldn't use a spread sheet as I can't fire up my computer every day whereas I can use my phone and tablet unless I'm really super bad).

    The other thing I liked is the fact you can customise it. When I first got it, I really was only looking at using it with a view to establishing allergies and intolerances (and helping me to keep track of that). Having used it, I realise there is more to it... It can be used for tracking most of the things I'd want to track because you can personalise it to include your own labels.

    I do use another app to track seizures. For anyone interested, it is by Epilepsy Action and is free. It asks you for the pertinent info that you need to log/know/remember and there is an option to add your own triggers and things like that.
     
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  14. GracieJ

    GracieJ Senior Member

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    My system gave me numbers to color code line graphs, showing clearly what was correlating.

    I could not do it now. Brain is too fried and there is too much information. So I would add that whatever system you use, make sure you are up to it cognitively or have help. I honestly cannot keep up with apps, either.

    Doing this now... I would probably go with a very simple daily rating system and a food diary.
     
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  15. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Wow, @CantThink, mySymptoms Food & Symptom Tracker looks like it will let me track what I want to track and accommodate symptom intensity, duration, and notes, hopefully with far fewer key strokes. Thank you!
     
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  16. CantThink

    CantThink Senior Member

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    @Never Give Up

    I think after the initial set up (maybe max about a week of doing the logging) where you add your personalised options, should then be fewer keystrokes. There's just a few taps after that - not a burden at all really.

    I hope it works out for you!
     
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  17. GracieJ

    GracieJ Senior Member

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    That's great, @Never Give Up ! Keep posting, would appreciate hearing how it works for you.
     
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  18. maddietod

    maddietod Senior Member

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    I put daily notes into paper journals for years, and switched to my computer last year. I have a file in Googledocs for the year, with individual journals by month. At the top of a new month I note carry-overs, like when I started something new. That way if I notice a pattern, I can easily find the beginning of the current intervention and see what my baseline was.

    The huge advantage of the computer is that I can go back and bold things when I think a pattern is emerging. For example, I've tried LDN a few times, and every time I started again, I put a note at the top of that month, and I bolded my first and last uses. Eventually I noticed that persistent throat clearing started with the LDN.

    My entries soon started putting themselves in order. I tend to put current symptoms first, then supplements if anything has changed, then my diary of everything I eat and drink. If I have a particularly active day, or alternatively, a couch day, that goes at the end. Physical and emotional changes also go at the end of the day.

    I'm well into my second year with this system, and it's working really well.
     
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  19. South

    South Senior Member

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    What helped me the most is picking just a few symptoms (and influencing supplements/pills) to track during any given week or month. Otherwise the chore of tracking lots and lots of symptoms every day just didn't happen.

    There's a quote that goes something like "the more steps there are to a project the more likely it is the project will never be successful". A weakness I have is turning every project in my life into something so complicated that it never gets done. Finally, after I reduced my symptom tracking into manageable, small chunks, I made progress.

    (I posted the actual method I used earlier, but whatever method a person chooses: phone apps, spreadsheets, or just two pieces of paper like I use, the idea of only tracking a few things for a week or month might allow more people to benefit from any system)
     
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  20. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    You are so right, @South! A simpler method is infinitely more achievable than a more complex one. Using a simple approach and shifting focus from one area to the next, should ultimately cover most of the intended ground. So, of course, I'm going to run headlong into the most complex usage of the mySymptoms app ever attempted and see how it goes. In the end I'll probably wind up using your wise approach of looking at smaller groups of variables, but for now, my enthusiasm is driving this project. For anyone reading this who gets PEM from cognitive exertion, listen to South and save yourself a crash. I don't have ME/CFS, my son does, so I'm not at risk of a crash. I'll keep you posted!
     

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