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Hello fellow lupies, does anyone keep a journal or diary specifically to document their lupus? Looking for ideas on starting one.

November 17, 2020
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A MyLupusTeam Member

Yes, I have to. I have so many symptoms daily. New ones, old ones...and weird ones. I need to make sure I document as doctors aren't very good at keeping track. It's highly recommended because you can track your triggers and flares. I have horrific symptoms before my period, it's so bad I get so depressed also for no reason. It lets me know I'm not going crazy that actually my body is reacting internally to this. It also helps emotionally đź’•

November 18, 2020
A MyLupusTeam Member

I’ve made a chart in word. There’s 5 columns, 1st is the date. The Second is my stmptoms and the severity of my symptoms (italics = mild, regular = medium, bold = severe) Third is my energy level I usually have it written down as Very Low Energy, Low Energy, Good Energy, High Energy or Very High Energy, then there’s 3 phrases “My Lupus interfered with my ability to plan and schedule events” “I woke up feeling worn out” and “I could not perform usual activities for long periods of time because of pain or fatigue.” I also sometimes put my strss level here, I know stress makes my flares worse. Fourth is the weather (I know it sounds weird, but you’d be surprised what things like rain can do to you) and the last column is your diet, write down what you’ve eaten that day, you may be reacting to an ingredient in your food, I know I can’t have Campbell’s tomato bisque, but I can eat tomato soup I’ve made myself and have no issues.

November 17, 2020
A MyLupusTeam Member

Hi! I keep a daily symptoms journal using the Rocket notebook. At the end of each month I can take pictures of my notes and upload them to any cloud service, then using a wet paper towel I can wipe the notebook pages clean. I’ve been doing this for a year and it’s been great to have all these notes consolidated into one place. Looking back through my notes I’ve noticed shortly after an emotionally stressful event (family drama, am I right?) a big flare will happen. So I’ve been able to identify stress as my biggest trigger. I’ve also noticed I experience more intense flares in the colder months than warmer months, but after reading other lupie’s experiences on here, it seems that’s pretty common.
Keeping a daily log is annoying and I haven’t always been great at keeping up with it, but it’s worth it to see how my symptoms have acted over time. And it helps remind me during periods of remission that it’s not all in my head and I need to be careful if I want to avoid another flare up.

November 17, 2020
A MyLupusTeam Member

I have it in the note pad on my cell phone because I am forgetful and will forget where I put the book lol

November 17, 2020 (edited)
A MyLupusTeam Member

Welcome, yes I try to journal write down my symptoms at least so when my RA doc asked me questions can give him more accurate info. I miss days here and there but do my best.

November 17, 2020

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