a pencil and three different surfaces to hold information are spread across the image

Often when getting diagnosed with a new condition or when participating in discussions about certain conditions, you may hear a symptom tracker mentioned.

The trackers come in many different forms and styles, but they can be a very useful tool in terms of both getting a diagnosis and checking the effectiveness of a treatment.

If your doctor (or your research) suggests a symptom tracker might be helpful for you (or you’d like to know if it might help you), read on to learn more about your options.

What is a symptom tracker?

A symptom tracker is a tool used to keep tabs of any kind of symptom or sign of your health problems.

It can be as simple as an occasional note in a notebook or planner or as complicated as one or more apps on your phone specifically designed for recording detailed information (and possibly connecting it to other outside information like weather reports or barometric pressure).

The key is that you are using some form of system to record one or more symptoms that you experience, and depending on the condition, may also be recording one or more variables that may trigger these symptoms.

Right now, the market is flooded with symptom trackers for Covid-19, to help people both with diagnosing if they have it, and helping researchers understand how the condition works for patients whose symptoms are not severe enough to require hospitalization. In some cases, they are also using it as a tool to measure exposures as well, as people share if they test positive for Covid-19.

There are symptom trackers designed for specific conditions, like migraines, Multiple Sclorosis, or Covid-19.

In many cases, though, each person creates their own symptom tracker independently or off a much simpler design.

Why would you use a symptom tracker?

In some cases, like the Covid-19 tracker, information is being gathered on the condition, and using the symptom tracker helps doctors better understand how the disease progresses, or how variable symptoms are among people who share the diagnosis.

Participating in this way gives doctors new insights, and may also lead to more precise treatment options or suggestions on what option may work best for people with your particular set of symptoms.

More often, though, you are independently using a symptom tracker to help you better understand your symptoms and condition, so your doctor’s diagnosis or treatment suggestions can be improved upon.

As I’ve mentioned before, diagnoses are often the doctor’s best guess about what is happening in your body.

A South Asian person is in her wheelchair sitting in front of a brick wall, holding a microphone while giving a speech.
Just like she is the best person to talk about what she experiences in her body, you are the expert in what you experience in your body.

Certain tests can exclude possibilities, other tests can increase the likelihood of another diagnosis being correct, but the reality is that your suggested diagnosis is a theory, one that will be tested over time by you and your doctor(s) working together to gather data that either proves or disproves that theory.

You are the expert on your body.

You are the person living that experience.

So you are the best person to gather data that can help confirm or disprove the doctor’s theory.

How do you do that?

By doing what your doctor suggests and recording how successful (or unsuccessful) their treatment is.

I have to admit that symptom tracking isn’t my strong suit. But it is important and a useful skill to practice, especially for complicated conditions or large sets of symptoms that don’t easily line up with known diagnoses.

Symptom tracking can be useful for psychiatric conditions, a plethora of physical limitations, many sensitivities/allergies, and many pain-associated conditions.

If you have symptoms that can be noticed or measured, and possible triggers for that symptom, it’s likely that tracking this relationship will be useful, especially if you are uncertain about the triggers, searching for an explanation, or testing out a new treatment.

What should you track?

There are two main types of data to track: the first is your symptoms themselves, the second is possible triggers.

Symptoms that may get tracked include things like pain (general or in particular places), fatigue, rashes, nausea/vomiting, when/how much you urinate or defecate (and if constipated or have diarrhea), increases or decreases in anxiety or depression, or moments where emotions or other symptoms shift or increase.

For example, I have a history of migraines that have mostly expressed as headaches, but have also expressed other ways, such as nausea, and most recently, I’ve experienced a couple of episodes of phantom smells, which may also be migraine-related.

I have tracked my migraine symptoms when they were first occurring, looking for their triggers. Also, when dealing with urinary issues, I’ve tracked time between bathroom trips, amount of water consumed, and decreases and increases in urgency over time.

I’ve been aware of my Functional Neurological Disorder (FND) symptoms over time as well, and early on, I would spend time noticing what I was thinking, feeling, or experiencing right before and after I’d have movement symptoms.

I spent close to half a year tracking my migraines when it wasn’t constant and found it very useful in terms of giving me additional information.

Let’s talk about triggers

Now, possible triggers is a little more challenging at first. Basically, most conditions have a list of known or suspected triggers, so you often start by either picking what you think is your most likely suspect, or, if you have the spoons, tracking all the variables until you start to notice a pattern.

For example, some people have allergic reactions that are likely caused by food. They can track their food choices and symptoms to look for the food that may be causing that reaction.

a seafood pasta dish with red sauce.  opened mussels decorate the edge of the bowl and cooked shrimp are obvious in the center
If you started to eat this dish, then had symptoms like wheezing, hives, and trouble breathing, it’s likely something you ate triggered an allergic reaction. The most likely culprit is a shellfish allergy, but you might keep a food journal to test that theory.

Other people are sensitive to heat, cold, emotional stresses, etc, while others may have a vitamin deficiency or damage to a major organ or system.

Migraines can be triggered by all sorts of things, though in my case, the most likely trigger is emotional stress.

Since that also is the major trigger for my FND symptoms, it seems like I developed the migraines in part because I already had a stress-induced neurological condition.

Fortunately, migraines are more easily treatable than FND, so I have been able to recognize some patterns and some solutions.

Depending on the condition you have, there are different variables to track, but often the triggers observed may include: barometric pressure/weather patterns (many people who’ve had broken bones seem sensitive to changes in weather), food eaten (either dietary tracking or focused on specific known triggers), emotional triggers, hormonal cycles (many women find certain conditions change based on where they are in their menstrual cycle), exercise regimen, medications/supplements taken, and more.

How do you track this information?

There are many different methods for tracking the information. You can start with something simple like taking notes in a notebook or on a document file on your computer or smartphone.

In some cases, a spreadsheet-type format is handy, while others swear by modifying planners, habit trackers, or bullet journals.

There are also many apps out there that can be used in certain cases for specific conditions.

I used a tracker app when I was first struggling with migraines. It was designed for somebody to track migraines when they occurred from start to finish.

It had spaces to record whatever medication I took, non-medical treatments I tried, whether my period was approaching, and when my migraine ended.

A monthly calender with a mood tracker on the next page lie in the middle of a table, with a pen and pencil lying above it and other objects scattered around.
Some symptom trackers come ready-made, like the mood tracker above, while others are best designed from more versatile options like the calendar above it, which would be great for recording simple information on a daily basis.

By using the tracker app, I learned that my migraines were much more likely to occur as my period approached than any other time, indicating that changes in my hormone levels was another trigger for my migraines.

If a person is concerned about their diet and possible allergens or sensitivities, they may start by journaling about everything they ate and then record the symptoms that they then experienced.

This works relatively well with simple allergies (like to particular fruits or vegetables), but gets complicated if the allergy or sensitivity is to a particular compound that is found frequently in their diet (like gluten or lactose).

Many people with pain-associated issues track when, where, or how often pain occurs, along with the severity of the pain.

Often, they list potential triggers, such as exercise, weather patterns (for pain associated with breaks, rain or snow often trigger increased pain), when medication is taken (to test effectiveness), or usage of the affected area, and the person records if they notice a change in their pain level associated with these events.

My partner Al broke his acetabulum, for example, and finds that his pain is worsened by rain, cold, and snow (roughly in that order). He’s also sensitive to exercise and holding his hip in any position for long periods of time.

Some tracking is done at consistent points in time (like reporting pain levels when you wake up), while other tracking is triggered by events (when you notice a symptom, you record it and the variables you noticed—or in the case of food diaries, you note down what you eat when you eat it).

The key is generally consistency. Recording your pain level when you wake up each morning gives you a relatively reliable set of information over time.

So does recording your pain level an hour after taking your pain medication.

However, if half the time you record your pain level first thing in the morning and the other half around when your pain meds kick in—and you don’t differentiate—that information isn’t likely to be anywhere nearly as useful.

Deciding what information to track

You generally set up a symptom tracker for a specific reason.

It may be to determine what triggers your depression, or to determine what food you may be sensitive/allergic to.

It may be to see if a particular medication is helpful or to try to disprove your doctor’s belief that your primary issue is, say, anxiety.

Think about this as an experiment to solve a problem.

Your symptoms are one set of variables to track. You know they are occurring but you either are uncertain of the cause, or are looking to see if the solution your doctor proposed actually fixes the problem.

Think about the easiest and clearest way to record your symptoms, and whether you need to record your symptoms at a specific time (if they are occurring all or most of the time, but possibly vary in intensity), or if you need to record when the symptoms occur (when they aren’t constant/consistent).

image of a person hoding their head in their hand, with the word symptoms superimposed. A hand is visible, touching a representation of a magnifying glass signifying search
Your symptoms are an important variable to track.

You also need to consider if you only need to acknowledge their occurrence (such as if you’re only looking at one thing, like a specific type of pain), or if you need to record more details or nuance (like if you are sometimes experiencing nausea, other times pain, and other times confusion).

The other major variable (or variables) are the possible triggers or treatments. There are many things that can trigger migraines, for example, so accounting for those possible causes is challenging.

On the other hand, if you suspect you might be allergic to strawberries, the only variable at the moment is whether or not you have eaten them recently.

The fewer variables you have, the easier the tracking.

However, if you fail to consider the right variable, you may not get any useful information.

Your best bet is to simplify as much as you can without leaving out something signficant.

That may mean that you start with gathering information on everything you can think of for a short period, then look for patterns; or it may mean that you focus on one symptom (or possible trigger) at a time, then rule it out if no pattern appears.

Think about what you want to track, and why—and usually a couple of priorities will stick out for you.

For example, with my FND symptoms, I learned that what type of symptom I had wasn’t really related to external triggers, but that my symptoms were sometimes a response to specific, identifiable thoughts, visual triggers, or emotions.

So the priority was to look at when I got symptomatic, and what I was seeing/thinking/feeling in the moment. Through that, I learned to recognize that self-doubt, fear of embarrassment/failure, ladders, ambulances, and fatigue were some of my triggers.

Then I had to figure out how to manage each trigger, which was sometimes simple things (like don’t overfill mugs or bowls so I don’t worry as much about spilling the contents), and sometimes more complicated (recognize the trigger, then reassure myself that the memory behind it was just a memory and I’m safe now).

The point is that I couldn’t treat the challenge until I was able to recognize the trigger.

Creating or finding your best tracker

What to do likely depends on your own energy level and what information or tools are available to you.

You can discuss suggestions with your doctor if they’re willing (a good one should be, but that may not be their top priority), and this also may be a great thing to discuss with others who share your diagnosis.

Some bloggers and businesses create tracker suggestions, which may be worthwhile for you to try out, especially if they’re already designed for your particular symptoms and/or condition.

A Covid-19 tracker app, with an indicator that it's currently functioning and buttons to select in these categories ' venue check-in', 'check symptoms', 'read latest advice', 'about this app', and 'enter test result'
This Covid-19 tracker app is designed to help a person determine if they need to be tested for Covid-19 by symptom tracking and to then track possible exposure between people.

I know I learned a lot more from using the migraine tracker app than I would have trying to take notes myself because I hadn’t considered hormones as a variable to track.

The most important thing, though, is to be consistent in how you use your tracker and to use a tracker that’s convenient for you.

You’re only going to get good information if you use your tracker consistently—so when you’re trying to decide what to look at, be sure to keep asking yourself “will I do this?”

The biggest problem I had with the migraine tracker was that I quickly recognized that one of my migraine triggers is blue light—like the daylight outside and the light that my phone and computer emit.

Part of why I stopped tracking my migraines was because the act of tracking it on my smartphone meant that I was exposing myself to a migraine trigger.

That’s just not the best way to help make it better.

You don’t need to track your symptoms all the time

I likely could have continued tracking my migraines if I’d shifted to using a paper tracker, but in all honesty, that particular symptom shift ate my spoons, and tracking it was no longer particularly useful to me.

I knew that I had migraines and that lights were a trigger, so I let my neurologist treat the migraine, knowing that the headaches decreasing would be a good sign of the medication working, and the headaches staying the same or increasing would be a strong sign that the medication wasn’t helping. I didn’t need a tracking system for that.

I didn’t keep tracking the symptoms, at least formally, since I’d reached a point where I could just number the headache on the pain scale and check with myself if it changed. I spent almost eight months or so with an almost constant headache that mostly was between a 3 or a 4 on the 10-point pain scale. I really didn’t need any more information than that.

Now it’s gone down to mostly being a 1 or 2, with the occasional few hours headache free.

When I start trying a new medication, I may develop a new symptom tracker for myself, especially if I start to have headache-free days again, but for now it’s at a pretty consistent state and there’s no need for me to record it. I know the cause (migraine) and the triggers (stress, blue light, hormone shifts, fatigue). I’ve treated what I can (shifted to an estrogen-free birth control, wear sunglasses, and keep my screens on filtered and low-brightness settings), including taking migraine medication.

a collection of a variety of pills ranging from white to red, arranged to form a question mark all on a yellow background
Symptom trackers are generally designed to answer questions.

There’s no reason at the moment for me to keep careful track, so I don’t.

You also don’t have to always be tracking everything all the time—that can get exhausting quickly. Instead, apply some logic and track when it’ll help you the most and when you have either specific causes or specific variables in mind.

Symptom tracking can really help to see if a new medication (or diet change) helps you, or to help you recognize your specific symptom triggers.

It can also help you to shift from “something’s not right” to “here are the things that trigger my symptoms,” which can often help to confirm (or disprove) a diagnosis, prove or disprove how effective a treatment is, or help you to compare triggers or treatments.

Symptom tracking is especially helpful during those transitional points and can be a really powerful tool to help you take control over your diagnosis and treatment.

However, it isn’t something that should have to be part of your daily life forever, but instead a tool to pull out whenever you’re trying to solve a problem, processing a major change or considering trying something different.

Tracking your symptoms and/or triggers can be extremely helpful for you and your health. You deserve to understand what’s happening and why—and knowing what treatments are (or aren’t) helping you to better manage your condition.

Once you find a stable path/treatment/solution, you have every right to save your spoons and not worry too much about tracking your symptoms.

Symptom tracking is a very useful tool, but one that isn’t needed all the time.

Pinterest image: In the upper right corner of the picture is the Thriving While Disabled logo, while the upper half is a picture of a calender with a collection of leaves drawn underneath, described as a mood tracker. The lower half of the image reads 'Empower yourself by tracking your symptoms'
Pinterest image: In the upper right corner of the picture is the Thriving While Disabled logo, while the upper half is a picture of a calendar with a collection of leaves drawn underneath, described as a mood tracker. The lower half of the image reads “Empower yourself by tracking your symptoms.”

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6 Comments

  1. I find tracking symptoms for migraine attacks to be so helpful! I’ll admit I find it tedious, but it’s good to see the attacks getting less frequent over the years with better medical care and it’s so helpful for both myself and my doctor.

    1. Claire thank you! I’m hoping to reach a point where I feel better ofen enough to think about tracking more thoroughly again. Right now it’s just – hrm, I hurt. Oh it’s not as bad as it was, so that’s nice..but it’s still an almost constant ‘ow I hurt’. Will be trying out some new treatments in January, I hope, so it’ll be tracking time again!

  2. As a list girl, and truly, I am really a list girl and I’m well known in my family at a young age for having lists everywhere, tracking is something that has been one of the best tools in my arsenal. I use an app called Manage My Pain Pro and it’s terrific. I also have handwritten journals for medical notes, but the app is great because you get a reminder and you can input your comments and thoughts via voice to text. At the end of the month, the app takes all your notes and areas where you listed pain and syncs it into handy bar graphs and pie charts that give my medical team a complete sum-up of where my pain is. They can see it is everywhere, but they can also see which areas hit me hardest and when it happens. They can also see what I used to try and calm flare activity, what worked and what didn’t. I can’t recommend tracking enough!

    1. Carrie- that’s great! I’m so glad you found a truly helpful tracking program for yourself. I’m in favor of anything that truly helps my readers have better control over their quality of life and I know that this can be a great tool for that. Thanks so much for sharing your experience because it is so important! I know I’m not great at lists and habits, so I do what I can when I recognize that it’s time to go at it again, but that constant tracking doesn’t work out too well for me. When my migraine shifted, I eventually realized that I’d just left the tracker on and hadn’t bothered to update anything for a few weeks. I do go back to it whenever there’s a specific something that I recognize needs to be studied. It’s such an important tool for better health!

  3. This is such an essential post – something we can forget to do.

    Tracking symptoms is so so necessary – especially for an issue like endometriosis where you should track your period cycle, the various symptoms and triggers around it – it all helps in explaining things to a doctor because it can be so easy to forget the experiences from one month to the next.

    I take photos of visible symptoms as well. Because I may not always have those visible symptoms when I finally get to see the doctor, so even those visuals have been such an important symptom tracker.

    Great reminder of a post!

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