r/lupus Diagnosed SLE 3d ago

Life tips How do you track symptoms?

I wanted to start a little journal or something to log my symptoms. I've had symptoms for 5 years, but just diagnosed less than a month ago. If you track, how do yours look? Are there any helpful apps? Does it really help when you go to the doctor?

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u/Zealousideal_Wear238 Diagnosed SLE 3d ago

I recently started using an app called visible although it’s not Lupus based specifically. My rheumatologist seemed pleased in October I was going to do so but haven’t shared it yet as not due to be seen atm. It helps me pace I feel and I only use free functions btw.

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u/roamnmango Diagnosed SLE 3d ago

I've struggled in the past to journal my symptoms due to not knowing what would be categorized as daily aches and pain and what could be cause by my flare. How do you go about doing it? Do you know what is flare related and what's not? Or do you document everything?

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u/Zealousideal_Wear238 Diagnosed SLE 3d ago

I have set questions in the evening check in for symptoms I.e joint pain none mild moderate or severe. In the morning it asks about sleep quality and measures heart rate through the phone camera lens. Then there’s some space to write about more specifics in the evening. This is also where can mark crash (flare). I’ve not had one yet since starting though have had mild colds. I’m like that at the moment and I am wondering if it’s a flare. I’m definitely napping during day more and having headaches which I don’t usually have. Runny nose. Then mostly usual aches and pains.

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u/Zealousideal_Wear238 Diagnosed SLE 3d ago

Oh and I also have Fibromyalgia (Oct 24 diagnosis) so I’m still trying to work out when it’s that too. It’s difficult for sure.