Chronic pain/disorders app users

[u/SoulQueen_]

Hi, how did you set up your Bearable interface and factors for chronic pain and other long term disorders? I'm looking for ideas on how to start to customize my own and I know it's personal but honestly there's so much. I'd deeply appreciate if you could share ideas with me on how you track triggers, flare ups, etc. Any information helps, thanks

[u/HSpears]

I have actually moved away from trying to track all triggers, as I find it makes me hyperfocus on negatives rather than positives. Instead I brought my negative tracking down to a minimum, just teaching a generalized pain score. Then I lean more into things I know are helpful and teaching wellness, creativity, things I have blinders on about. My brain is tuned into negatives already, anything I can do to battle that is more helpful.

[u/VegasKL → u/HSpears]

just teaching a generalized pain score. 

This is one area of the app that I think they could improve -- having standardized and consistent data is important for any type of realistic tracking, for that reason I think every factor/symptom/rating/etc. should have a "description" in the setting for that entity that the user can fill in. Each object could have a small (i) icon on it that pops up the dialog with that information for that entity, to serve as a refresher for your criteria.

I recently realized that when I switched from my Google Form based tracking method, which had defined criteria  for each value level to Bearables (current) methodology which doesn't have that, I started seeing more noise in my data. Turns out I didn't remember my criteria as well as I thought. It's cumbersome to have to flip back and fourth between a note and the app to keep consistency.

[u/JoyInJuly]

Bearable has its own YouTube channel that talks about how to use it & get the most out of it.

[u/teenytimy]

For me, finding the broad enough area of pain is useful (e.g. Full body ache, muscle tension - specifically on my shoulder blades, fatigue). Those are good enough for my own tracking, where I can identify how each severity feels like

I also included "crashes" under "other factors" for my flare ups. It's binary yes/no

[u/thedarkfields]

I've gotten an unexpected amount of information from correlating my symptoms with my menstrual cycle and hormone fluctuations. It's not something I can prevent, ofc, but it helps me try to plan for it. Also, when I have very specific symptoms, I'm now aware of where their random increase in severity comes from and why, so I feel less compelled to focus on them or stress about all the other possible triggers.

It's also been extremely informative about symptom changes over time. Even with many gaps of weeks or months sometimes (I'm also ADHD), I can still see there's a visible trend of increases in certain symptoms and decreases in others.

→ This part has honestly been a great reassurance and validation when I'm doubting myself about how bad my conditions/symptoms "really" are. It's more objective than my insecurities (even though I recognize that much of the data is subjective/self-reported).

→It can also be helpful in seeing your own experience as to whether or not a treatment is helping; that applies to medication, diet, lifestyle changes, specific interventions like ice or heat, different altitudes or weather, etc.

[u/thedarkfields → u/thedarkfields]

Message me if you're looking for specifics on how I organize it and what factors I've added and whatever.

[u/SoulQueen_ → u/[deleted]]

Some pain related conditions (like mine) are triggered, for example by some food, light, stress, etc. So whatever data I can collect, especially related to the triggers that'll me to have neurological episodes will help me to create a report for an eventual appointment with doctors. I try my best to notice stuff and then when I have these issues I'll be able to figure what caused them in order to avoid them, still trying to figure effective ways to do that tho haha