Tracking Lupus Symptoms and Treatments

It can be hard enough to remember what you ate for lunch yesterday. Relying on memory for tracking lupus isn’t enough.

Keeping track diligently of lupus symptoms, flares, and treatments are a crucial part of finding out what is working for you — and just as importantly, what isn’t working. Having reliable and clean logs will make it easier to share accurate and identical information with all members of your care team and any new doctors that you may see. But what should you track?

Tracking lupus symptoms

If you are newly diagnosed or questioning if you have the disease, this is particularly important. Tracking your lupus symptoms daily can help you identify patterns in how you are feeling. For example, it can be easy to remember having headaches last week. But, it may be harder to remember how many days you experienced headaches and information about the pain.

When tracking symptoms, you should record:

• The day and time for which you are recording
• The type of symptoms you are experiencing – for example:
  • Fatigue
  • Joint pain
  • Muscle spasms
  • Many, many more
• A consistent detail about the severity of the pain or discomfort – for example:
  • Mild / Moderate / Severe
  • 1 = Incredibly mild  |  10 = Can’t imagine more pain/discomfort
• A brief description of the symptom – for example:
  • Pain may be stabbing, burning, etc.
  • A rash may be red and about the size of a dime
• The location of the symptom
  • Headaches may be on the front, left part of the head
  • A rash may be on the left elbow

Keep a medication log

When paired with the lupus symptom tracking, a medication log can be an invaluable tool to determine potential side effects of medications. It can also help determine if a medication cocktail is having the desired impact, or if it may need to be adjusted.

A medication log should include:

• The day and time for which you are recording
• The name, strength, and dose of medication that WAS TAKEN
• For reference, the name, strength, dose, and schedule of the medication that WAS PRESCRIBED

Download the LupusCorner app for support with tracking lupus, managing medications, and even chatting with other Lupus Warriors. It’s available for both iOS and for Android

Track your periods

For women that are still menstruating, tracking your periods can be an additional point of comparison to the symptom and medication logs. You may be able to identify additional patterns such as increased fatigue or soreness. If the uptick in the symptoms is significant, your treatment team may be able to develop strategies or treatments to minimize symptoms throughout your cycle.

You can use Flutter on your smartphone to track this.

Monitor your diet

There is plenty of misinformation on the internet about miracle food cures for lupus. While those are not to be trusted, tracking your food intake may help you identify which foods make you feel better or worse. Additionally, it is important to maintain a balanced diet to ensure proper health. Apps such as MyFitnessPal have large food directories. By tracking daily, you will be able to track your caloric intake and ensure you are getting enough of each essential element, like fats, proteins, sodium, carbs, and sugars. Without tracking, you may not realize how far off you are from the daily dietary guidelines.

Record your exercise

Exercise is all about goals. While you may not feel able to run a marathon, there are plenty of daily activities that keep you active and healthy. Monitoring walking for five to ten minutes, climbing stairs, or full gym workouts can help you monitor your progress.