How I use my Fitness Tracker To Help Manage My Autoimmune Disease

I am no stranger to using a fitness tracker to help manage my Addison’s Disease. In 2014, I actually got to beta test wrist HR monitoring technology before it was even released on a consumer product. They wanted to make sure that the technology was accurate enough, so I volunteered to be part of the sample group that wore both a chest strap and a wrist strap. They had me run and walk on a treadmill at various speeds and inclines. I remember speaking to the engineer at the time about how I wanted access to that technology because I knew it could help me manage my disease!

Since that time I have used (and, let’s be real, murdered) multiple different fitness trackers. Let us take a brief trip down memory lane.

2013: Fitbit Flex

The Fitbit Flex was first released in May of 2013. I believe I purchased mine only a few months later. It was considered groundbreaking, as it was Fitbit’s first tracker to be worn on the wrist with the ability to monitor sleep. There was no digital display, just a status bar to let you know how close you were to your step total. It could not even monitor stairs climbed.

While my cohort of friends / colleagues all bought these to try to beat each other step records, the motivation for my purchase was drastically different. See, I had just been released from the Nightmare Addison’s Crisis. I was struggling to remain compliant on my oral HC dosing of 5+ times a day. I would set alarms on my cell phone, but I would regularly leave my phone behind for work meetings.

The Fitbit Flex had the ability to buzz your wrist to alert you for an alarm. I could walk away from my cell phone. But it was much harder for me to walk away from my wrist! I got into the habit of always carrying water and some oral HC pills. When my wrist buzzed, I took my medicine. This became a trained response, and drastically improved my compliance with my medicine schedule.

I murdered this Fitbit Flex while I was living in Malaysia. It was under a year old, so technically it was still considered “in warranty.” However, I was living internationally and had no way to file a claim. Plus, my original reasoning behind its purchase was no longer valid. I had switched to the cortisol pump and was no longer required to swallow pills 5+ times a day.

2015: Fitbit Charge HR

Over a year after I beta-tested the technology, the product was finally released to market! Of course I purchased it. I knew that my treadmill adventure was one of the data points used to make the technology more accurate.

After a while, I noticed a correlation between my hydration levels and my resting HR. If my resting HR suddenly began to climb, I was in a danger zone with my Addison’s Disease.

But I had to be very careful with the fitness tracking aspect of this watch. I found myself obsessing at times to an unhealthy level. It was not good for me to maintain a large list of “friends” in the app. I would easily grow discouraged when I could barely muster 2,000 steps a day due to an Addison’s Flare. Meanwhile, they were complaining that they only got in 15,000 steps.

I prematurely murdered this Fitbit as well. Fitbit did not build high enough quality of products that could handle my level of roughness. When it broke, I actually felt like a weight had been lifted. I would no longer be able to obsess over every little metric. Rather, I could just live my life, tracker free. I purposefully decided to not replace it.

2017: Garmin Vivoactive HR

Numerous life altering changes happened in my life between when I purchased that first Fitbit Flex and when I decided to step back into the fitness tracking world. In the past, I had a borderline unhealthy obsession with the tracking metrics. In 2017 I was faced with a choice: Should I return to the fitness tracking world given my propensity to cause myself harm?

In the end, I decided yes. But, I was going to lay two ground rules.

Rule One: This would not be a “social” thing.

Both Fitbit and Garmin have corresponding apps that encourage people to be “social.” You can add friends, chat, compete, and taunt. This is not a beneficial feature for me. On my bad days, I am lucky if I can get in 200 steps. It does not do me good to see my “friends” bragging about how when they are “deathly ill” they “only” got in 5,000 steps in a weekend.

I would not allow unnecessary noise and feelings of inadequacy into my life.

Rule Two: This was a medical device and not a fitness tracker.

This is a very important distinction to make. A fitness tracker has the goal to get you into better physical shape. A medical device has the goal to help you better manage your health. I refused to step back into my obsessive and unhealthy behaviors from the early days where I was attempting to compete against my healthy coworkers.

This device was strictly to monitor my resting HR as an early indicator that my Addison’s Disease might flare. And it has proven incredibly useful. Resting HR correlates well with my disease stability. BUT it is important to note that you must determine YOUR normal. When I track my resting HR, I am looking for trends over days. Never focus on a single number in isolation.

I was ready to step back into the fitness tracking world. I switched to Garmin, as they had the reputation of being more rugged. After murdering all of my Fitbits, I was ready for something that I wouldn’t murder.

2019: Garmin Vivoactive HR (Again)

Early 2019, I noticed that it looked like some water had seeped underneath the screen of my Garmin Vivoactive HR. A few hours later, the device was dead. It appeared that I was even able to murder a Garmin! With the advice of others, I reached out to Garmin support even though my device was technically out of warranty.

Garmin support was incredibly helpful. They informed me that this was a known manufacturing issue, and as such they had automatically extended the warranty on all devices from one year to two years. Additionally, they would send me a brand new tracker with the manufacturing defect corrected. This was a drastically different experience than Fitbit, and I was quite pleased.

2020: Time to Upgrade?

I purchased a Garmin Vivoactive 4s at the end of April on a sale. I initially hesitated at the thought of upgrading, as my old Vivoactive HR was still working perfectly fine. In the end, I splurged on this and passed my old device on to a friend. The following features influenced my decision to upgrade.

The ability to monitor Pulse Ox.

It is crazy to think back on how the first fitness tracker I owned couldn’t even tell me how many flights of stairs I climbed. And yet, I am able to now constantly monitor my Pulse Ox. Pulse Ox can be another indicator of getting sick, and I wanted the ability to gather all the data I can in this COVID-19 era.

The ability to do guided breathing exercises.

My therapist has been repeatedly working with me on tips to remain sane, calm, and grounded during this apocalyptic time in the USA right now. One of the things she highly recommends that I regularly practice is mindful breathing. This Garmin device has three separate exercises built in.

Stress Tracker

This was a new feature that I wasn’t quite sure how to react to. How does one measure the stress response when the stress response is broken? Though within the first week of wearing the new device, my wrist did buzz at me asking me if I would like to be taken through a guided breathing exercise in order to calm down.

The trigger? A friend had shared with me an idiotic conspiracy theory that he believed in and I just could not handle his stupidity. My watch noticed that my heart rate had elevated, and it buzzed a gently reminder to CALM DOWN.

Body Battery

This is another completely new metric that I wasn’t sure how to interpret. After wearing the device for a few months, I do have some opinions. But I shall save that for a future blog post.

Conclusion

In a future blog post, I will give an updated opinion on my Garmin Vivoactive 4s as I have now owned it for over five months. However I will state that I am continuously amazed at the advancement in this type of technology.

In 2013, I desperately needed access to a 24/7 HR monitor. My cardiologist ordered one, however his hospital did not have enough equipment. I never was able to gain access to that test.

In 2020, I am wearing a 24/7 HR monitor on my wrist that I was able to purchase for myself.

I also want to quickly note that they are doing more research about how a fitness tracker CAN predict illnesses. Duke University in North Carolina is currently conducting a study to see if the data can predict a COVID-19 infection.

Dunn said that in previous research studies looking at the flu and Lyme Disease, “with our algorithms that we developed, we could actually tell that people were sick usually between 72 to 48 hours before they reported feeling sick. There were some obvious signs on their smartwatches,” such as elevated heart rate.

Additionally, a pro-Golfer was able to use his fitness tracker to detect COVID-19 before he became symptomatic. He did this by knowing his “normal” and then realizing that his body was suddenly outside of that window of normal.

This is something that I have known for over five years, and it is unbelievably exciting for me to see the rest of the world catch-up.

My fitness tracker is an important tool that helps me manage my autoimmune disease.

And I cannot wait to see what future technology will empower us to be able to accomplish. But I am positive it will help me remain Clearly Alive.

Do you use a fitness tracker? Which one do you own? How has it helped you? I’d love to hear from you!