from LONG COVID ESSENTIALS
a resources series by The Sick Times x Long COVID Justice

How to track your Long COVID symptoms

Long COVID is a multi-systemic disease, meaning it can affect every organ in the body. As a result, there are over 200 symptoms associated with the disease. Keeping track of your Long COVID symptoms isn’t always easy. But it may help you get to know your baseline (or, typical health level), identify triggers that cause or increase symptoms, and figure out what to seek treatment for.

Tracking symptoms can help you notice patterns or changes in your health. For example, you can write down your symptoms every day for a month. Each night, record the symptoms you noticed most that day. You may want to use a scale, such as 0-10 or thumbs up/thumbs down, to note how bad symptoms are.

Tracking your activities may also be helpful. That can help you understand if symptoms may follow activity (which may be from post-exertional malaise.)

People living with Long COVID may experience cognitive challenges. Keeping track of symptoms can help you document changes that may be hard to notice otherwise.

Keep a symptom log or diary

A symptom log or diary can offer healthcare providers detailed information about how Long COVID impacts an individual’s daily life, and whether symptoms are improving or worsening. Because some conditions and symptoms associated with Long COVID can relapse and remit (meaning come and go), tracking symptoms can help determine your baseline (your current or average health status) and identify triggers that decrease your quality of life.

There are a number of key symptoms to monitor if you suspect you have Long COVID. These may include ongoing or fluctuating fatigue, increased frequency and severity of headaches, loss of or changes in your senses of smell and/or taste, dyspnea (difficulty breathing), dizziness or light-headedness, and “brain fog” or memory problems (cognitive dysfunction).

Smartphone apps and wearables

Smartphone apps and wearables such as Visible, Lumia Health, FUNCAP, and other fitness trackers can help log symptoms and other healthcare information like heart rate and heart rate variability. However, wearables and smartphones can be expensive. Visible has a useful free option. Note: You may want to review privacy terms and conditions before sharing sensitive data with apps or wearables.

Sharing information with providers

It may be helpful to share information from your symptom log or wearables with your medical providers. Add general health and medical information, including:

Prior health conditions, overall (including any family history of medical conditions)
Prior health conditions possibly made worse by COVID-19 (i.e. tinnitus, diabetes)
COVID-19 history, including any test results, dates any symptoms started, symptom timeline, and time till testing negative (when possible to document). Having a positive test can be helpful in getting a diagnosis, but the definition of Long COVID does not require a positive test.
Whether it was possible to rest and to receive treatment during acute infection.
Prior Long COVID-related consultations (i.e. type of specialist seen, information and vitals gathered at appointment, results of any tests.)

Resources

Symptom and Activity Journal — Long COVID Families
Long COVID Symptom Diary — Lung Saskatchewan
Visible (free and subscription versions) and Lumia Health wearable (subscription)
How Chronic Illness Patients Are ‘Hacking’ Their Wearables — Wired
My Life with Long COVID — Giorgia Lupi, The New York Times

Writer: Britta Shoot • Editor: Miles Griffis • Medical reviewer: Dr. Michelle Haddad

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Notes

This series was published in fall 2024; some information may be subject to change.
Although each topic has been reviewed by medical professionals, they are informational resources, not medical advice. Always talk to your medical providers before trying treatments or symptom management strategies.
Each resource page offers brief information and is not comprehensive. We know there is much more information on each topic we cover, and that there are additional topics not yet addressed in this series.