Long COVID Symptom and Activity Tracking

I have been tracking my exertion and long COVID symptoms over six months. It has helped.

I wanted to provide this because when I was sickest, brain fog made designing a tracking system really, really hard.

If you want to keep the tracking simple, just write down what you did and how you felt each day in a notebook.

Why Track?

I have experienced post-exertional malaise (PEM), where I do something that feels normal and reasonable at the time, but then two days later my energy crashes and I have to rest for days to recover. Tracking my exertion allows me to look back and see the cause of the crash.

My recovery has been very slow. Tracking allows me to look back weeks or months and remember that I am making progress.

Doctors always ask, “How are you doing?” Tracking allows me to prepare before the appointment with a summary containing some objective measures. Especially when things are going well, it’s hard to remember bad days, especially in the very recent past.

As I try new interventions like electrolytes, acupuncture, or supplements, tracking allows me to measure if the intervention is helping or not.

An Official Source

Long after I had been tracking I found that Stanford released a Post Exertional Malaise Avoidance Toolkit which offers details that I think are helpful.

The toolkit recommends tracking “overall activity,” which I do not do, but I think is a good idea. Especially as I was improving, I felt like I was doing more, but I didn’t see that reflected in the individual activity scores.

What I Track

I use a Google Sheet that has the following fields:

  • Date – I record something every day.
  • Day of Week – helps me keep the data rows straight
  • Overall (0-10) – How do I feel overall today? The goal is to feel good and it’s possible to feel good even with symptoms, so this is a good one to track.
  • Crash – Did I have a significant set-back in what I could do in a day?
  • Warning – Did I have sensations that warned me of a crash? This helps me recognize when I might be getting close to a crash. Perhaps more importantly, it helps me notice when I have troublesome sensations that don’t predict a crash.
  • Notes - I write how I slept the day before, what I did that day, and how I felt.

I only track my most common symptoms and use the Notes field for the rest. The symptoms I track are

  • Fatigue (0-10) – Regardless of what I did today, how tired did I feel? Ten means I couldn’t get out of bed.
  • Brain Fog – Did I have brain fog? I just use a yes/no because I found more detail hard to quantify.
  • Wonky Head – Yes or no?
  • Chills – Yes or no? When I over-exerted myself, I would feel very cold.
  • Pain (0-10) – I use the Numeric Pain Rating Scale. It may be useful to track a particular body part. For example, I have a bad shoulder that I track.

For exertion, I track

  • Physical – How much did I use my muscles? Ten is a normal day.
  • Mental – How much did I use my brain? Ten is a normal work day.
  • Emotional – How emotional was today? Ten is one of the most emotional days I have ever had.
  • Social – How much did I socialize? Ten is one of the busiest social days I have ever had.
  • Walk (miles) – How far did I walk for exercise? I walk the same route every day and get the distance from Google Maps.

Tracking physical, mental, emotional, and social exertion separately helped me avoid discounting all the work my body does besides just physical activity. Emotional exertion in particular make crashes more likely. In the Stanford toolkit they recommend tracking Overall exertion, so I added that to the example.

Using Google Sheets

I track using Google Sheets. It’s free and available through a browser or mobile app.

I created a blank demonstration sheet based on the one I use: Example of Long COVID Tracking (Sign in to Google, choose File -> Make a copy and you can save it for yourself.)

The checkboxes are created under Data -> Data validation.

I added colors using the Color Scale feature, which I demonstrate in the example. To see how I did that, click on the column with colors, then choose Format -> Conditional formatting. From there you can see the rules. Note that the walk column is defined differently than the others – the largest value in the column is dark green.

If I zoom out to 50%, then I can see about 3 weeks of data. The Color Scale helps identify patterns without messing with graphs.

Using Visible

The free version of the Visible app also allows you to track symptoms and exertion. I did not like the scales it uses. For example, the exertion scale is

  • None
  • A little
  • Somewhat
  • A lot

An absolute scale of 0-10 where 10 represents a normal day allows me to better judge my progress back to normal.

Also, Visible only allows you to record symptoms and exertion during the Evening Check-in and I find it sometimes useful to record things in the middle of the day.

Tracking Biometrics

I tried wearing a Garmin watch when I sleep, but it made my sleep worse.

I continued to wear the Garmin watch during the day and tracked the following:

  • Steps
  • Moderate Intensity Minutes
  • Vigorous Intennsity Minutes

I explain in the Garmin watch article how I set the heart rate zones low to track intensity minutes.

Much like my experience with the Visible app, initially I found the data useful to understand how much I was exerting myself. Once that phase was over, I found the numbers induced anxiety. I don’t what a watch or app to tell me I should feel bad.

I also tried tracking resting heart rate (RHR) and heart rate variability (HRV). Many people find that useful, but I did not. Read more

Conclusion

If you experience post-exertional malaise, I encourage you to do some kind of tracking to look for patterns. Try to keep it simple.