Lupus Recordkeeping: Tips, Tricks, and More

Keeping records is vital for people with lupus and it can identify triggers. Here are some tips, tricks, and pitfalls you will encounter along the way!

Keeping track of what is and isn’t working is a crucial part of treating lupus. But, simply remembering symptoms isn’t enough. That’s where taking notes comes in!

Many people with lupus find keeping track of their symptoms, emotional state, and life in general to be therapeutic. In a way, recordkeeping is a sort of productive journaling. Writing therapy itself can help calm the mind, reduce stress, and – as a result – reduce the symptoms of lupus.

However, keeping a record has more practical applications: By tracking your symptoms, you can find patterns, determine flare triggers, and have something definite to bring to your doctor and treatment team. Recordkeeping can help you get diagnosed, track symptoms, isolate stressors, and find the best medications and routines to take care of your lupus.

What should you be tracking:

• Date and Time
  • The weather might also be a good thing to track, since it can have a major effect on symptoms.
• What Symptoms you are experiencing
• How intense your symptoms are at that moment
  • Bonus Tip: Use consistent measurements like Mild / Moderate / Severe, or a 1-10 scale. This will make it easier to see the patterns later!
• The name, dose, and strength of any medications taken that day
• What was eaten that day
• The amount of exercise activity that day

Women should also track their periods, as the hormone fluctuations can be linked to changes in their lupus symptoms.

Recordkeeping is a powerful tool for predicting flares and tracking symptoms, and everyone does it differently. However, there are tips that can be helpful for everyone – and pitfalls that everyone should look out for.

Tip 1: Keep a Routine!

Keeping records is easier if you do it regularly, and the best method for staying regular is to incorporate recording your feelings, thoughts, and symptoms into the rest of your life. Make recordkeeping a part of waking up, taking medications, morning coffee, or as a part of your post-exercise rest, part of dinner, or part of going to bed – whatever works for you. In either case, you should try to make it a consistent part of your life.

Making recordkeeping a part of your daily routine means that the information you record stays consistent, but the biggest benefit of regular recordkeeping is some much-needed structure for the day. A little bit of structure can make a world of difference for your mental health!

Tip 2: Be as Detailed as Possible!

The more detail you put into your records about your lupus experience, the more detail you can bring to your treatment team later.

Where are you hurting? How are you hurting? What were you able to do? What did you eat when you had a flare? How was the weather? Did you take your medications? Did you do anything, usual or unusual, today? Detail can make the difference for being diagnosed with lupus, and can help doctors figure out your ideal treatment regimen.

Tip 3: Don’t be Afraid to Try Apps!

There are many apps out there for recording chronic disease symptoms. Some are specific for lupus, some are for chronic diseases in general, but even a fitness app can help keep track of your medical needs. Apps have an advantage in that they can be very easy to use, just like social media, and many will let you see your progress over time at a glance, easily comparing your results over the course of weeks. Apps can collect data for algorithms and AI, which can aid in recording, calculating measurements, and even finding relevant information tailored to individual people with lupus.

Many apps have forms that can help narrow down what you want to keep track of, and some way to communicate or compare your results with other people using the app. This can make you feel less alone, give you perspective on your own symptoms, and help you find new ways to manage your symptoms.

Pitfall 1: Don’t Overdo it!

People with lupus often experience fatigue, which can make it difficult to keep to a routine or complete what, to others, are basic tasks. At the same time, there are hundreds of symptoms of lupus, and you might want to record all of them. Recording all of your symptoms may be therapeutic, but it can also be exhausting and difficult, and the more difficult it is to keep records, the less frequently you will keep the records.

If you fall off the recordkeeping and leave it behind after a few tries, then the records won’t be very useful – but also, who can blame you? Our advice is to not overdo it. Pace Yourself! Symptoms? Flares? Food? Mood? Figure out a minimum of what you want to record, and don’t push yourself to do more detail than that. You don’t need to be perfect!

Pitfall 2: Don’t Force it!

Don’t be limited to just writing! If journal entries or bullet lists aren’t your thing, they don’t have to be! Try dictation, forms to check off, or even color-code days of the week depending on how you feel. As long as you are tracking what you feel you need to be tracking, you can use whatever makes you feel better. If putting stickers on a chart records the information, doesn’t sap your energy, and makes you feel better, then it will be easier to keep up and incorporate into an official routine. Using a form of some sort can be a miracle. Use a method you Enjoy!

Pitfall 3: Don’t Rely on One Strategy!

Apps and online note-taking programs like Google Docs and Evernote are great! They save you time and effort, automatically save your files, and can even be organized. However, the servers can crash, you can lose your password, and the services might even go out of business – and with it, your notes are gone!

Of course, keeping notes on your computer could be lost if you lost your computer or get corrupted files, and a physical notebook can be lost or damaged. Use backups! Use multiple methods of note taking and keep backups – a great task to delegate to a friend! If you have a trigger list or a panic list, definitely make sure that is always available, no matter what.

Ways to Keep Records with Lupus

Even just among the apps, there are hundreds of options for recording your lupus. The Discerning You reviewed 13 apps for recording chronic illness. Of those 13 apps, they rate Manage My Pain, Stop.Breath.Think, Pathways, and Me.Meditation are rated the highest. Notably, they all have meditation or stress-relieving aspects to them, so they cover the “art therapy” and “Journaling” part of recordkeeping, which is definitely something to consider!

Our LupusCorner app (Android and iOS) enables forum chatting, questionnaires, and an easy-to-use symptom recording form.

Excel spreadsheets can be a great way to keep track of your lupus, and, by using filters (under the Data tab in the Microsoft program, very useful along with Freeze Panes) you can easily see whether certain conditions (such as weather or food) match up to certain symptoms. Of course, you can also use a simple word document, google docs, or, even, a physical journal or diary. For physical journals, it might be a good idea to use colorful tabs to mark days or entries with particularly intense (or peaceful) symptoms.