If you put the words “running” and “POTS” together, it looks and sounds a bit contradictory. They are two words that don’t seem to go together, given what POTS is and the taxing nature of running. But running with POTS, at least in my experience, doesn’t have to be impossible forever. In this blog post, I’ll share my story of how I got back to running with POTS.
Please note that this is only my personal experience with POTS and running. I am only sharing my story so other POTS patients can see what’s possible, not to suggest that anyone should do exactly the same as me. I am not a doctor. Running may not be appropriate for certain people with POTS, so please consult a medical professional before starting a new exercise program that involves running.
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Running Before POTS: Where I started
I didn’t always like to run. In fact, for the longest time growing up, I despised running. It hurt, and I sucked at it. Plus, the thought of people seeing me huffing and puffing and red as a tomato made me horrifically self-conscious.
I didn’t start running until sometime in high school — but only on the treadmill in my basement where I had complete privacy. I worked up to running three miles a day. That is until I developed shin splints because I knew nothing about running and rest days and progression — all that essential stuff.
But my time spent running became my time to reflect. It became my time. It was a time when I could let my creative juices flow and brainstorm for my stories and writing projects. It gave me time to think, reflect, and get out any emotions I’d been bottling up.
All these variables turned running from something I hated into something that became an essential part of my life. I even eventually overcame my fear of running in public — dripping in sweat and all! I ran my first 5k during undergrad and won a medal for second place that has become an object of pride for me (You can do anything you set your mind to!). Around that time, I was in the best shape of my life. I felt on top of the world. Invincible.
And then — if you recall from my POTS diagnosis story — I pinched a nerve in my lower back that left me unable to stand or walk for months. Soon after, I developed POTS. My running days, as of then, were over.
When I received my POTS diagnosis, I was unsure if I’d ever run like I used to, or at all. I was in really rough shape. If you have POTS, I’m sure you understand. At the time, just walking across campus to get to class winded me and had me afraid of passing out and causing a scene. I struggled to keep up with my friends because, physically, walking began to feel like I was actually running.
And when I tried to go for a run, my heart rate would soar to 180 bpm within minutes, making it impossible to continue. Even a slow jog had the same effect. Very quickly, I realized I couldn’t tolerate running with POTS.
I was crushed. Like I said before, running became an essential part of my life. To feel like I lost it, and everything it did for me, was devastating.
Determined To Run Again
I’m a bit embarrassed to say it, but I cried at my doctor’s appointments about my disappointment with my exercise intolerance for running. I just felt like my identity was slipping away from me, and I didn’t recognize this chronically ill girl in her twenties.
But to my surprise, my neurologist told me it might not be impossible to run again. You know, the whole never say never thing. I’m not sure if he was just trying to console me in the moment or if he really meant it. Knowing where I am today, I think now he truly did. He also said that I shouldn’t get my hopes up high that it would happen fast, and even if it did happen, it may not be like I used to. That was fine with me; I didn’t want to race or be great, I just wanted the ability to run, in any form, just for me.
My neurologist firmly told me that getting back to running would take time–lots of time–as well as dedication, perseverance, and consistency. And I’d need to do everything he said to treat my POTS, which for me included lifestyle changes and taking pyridostigmine. (Note: I am no longer on that medication as I no longer need it!) Even then, he couldn’t guarantee that I’d tolerate running with POTS.
But I was determined. I made a promise to myself that I would work hard, follow my treatment plan, and stay committed to my long-term goal.
The Early Days: Pre-running training
My neurologist suggested I meet with an exercise physiologist at Cleveland Clinic, so of course, I listened. This meeting was really insightful, and I’d encourage POTS patients to meet with one if they never have.
At this appointment, I learned that I needed to exercise at a much lower intensity. When I’d push myself to run despite my pulse rising into the 180s, I was pushing my body too hard. It was worsening my POTS and causing a post-exercise hangover, as I call it.
The exercise physiologist told me to avoid running and explosive movements, such as jump squats and burpees (or other HITT workouts), at least to start.
I left Cleveland Clinic with a printout of the Levine Protocol, a gradual exercise program designed for POTS patients. On this printout, the Cleveland Clinic recommended buying a watch and chest strap for monitoring heart rate during exercise. They specifically recommended the Polar H10 chest strap for its precision in providing real-time heart rate data.
I wanted to do this right and equip myself with the right tools (and the nerd in me kind of loves getting all the data of how my heart rate reacts to my workouts) so I bought a chest strap. It has not been a purchase that I have ever regretted. It was pivotal in my journey because it is very sensitive to heart rate changes that you see immediately (FitBit is accurate too, but I notice there is a bit of lag sometimes). When I started running, I knew right away if I needed to slow down or stop.
After studying the different months of the Levine Protocol, I decided to start at month three. I’ll confess that I didn’t follow the program rules strictly. I’d already been attempting to exercise (and overworking my body) for a while, so I had some endurance built up. Plus, when I began exercising on a recumbent bike, I actually found it difficult to get my heart up into my target heart rate zone for the protocol. And the more resistance I added, the more my sciatica flared up.
So, I ditched the recumbent bike and transitioned to an upright bike to complete my cardio days for month three. I stuck with it for the whole month, even when it got monotonous. To mix it up, some days I went biking around my neighborhood, which had a good mix of hills and flats.
I also prioritized going for one long walk on the weekends to build my upright endurance. I don’t recall what mileage I started with, but I know I worked up to walking almost 4 miles at once. If I had to guess, these walks totaled between 2-4 miles.
The next month, I incorporated time on an elliptical with moving arm levers. I’d split my workouts up between machines so that I didn’t do too much too soon. For example, I started with just 10 minutes on the elliptical, and then I’d finish my remaining cardio minutes on the bike. Eventually, I worked up to splitting my time half and half between the elliptical and the bike. When I could complete most of a full workout on the elliptical, I grew confident that maybe, just maybe, I could start jogging.
How I Progressed To Running With POTS
I knew I couldn’t jump right into running like I used to. This needed to be a slow progression.
So, I reintroduced running by doing walking and slow jogging intervals. For about a month, I slow jogged for one minute, followed by 1.5 minutes of walking. I repeated that 12 times to complete my “run.” All the while, I paid careful attention to my heart rate. If I spiked too high out of my heart rate zone, I stopped jogging early and prolonged my walking time. If my heart rate stayed in zone, I proceeded with the workout. I usually did these workouts every third day or 2-3 days per week. On other cardio days, I cross-trained with biking.
Again, I did that for a whole month without changing anything. I’ll reiterate here that it took me a very long time to build running tolerance. Also, I’d like to emphasize that in that first month I jogged very slowly. I’m sure someone power walking would have passed me. But I didn’t care. You can’t care. You just have to smile that you’re trying and keep going.
After that first month, I gradually increased my running time at this slow speed. I increased to 1.5 minutes jogging, then to two minutes before deciding to increase my speed. Note: When I increased my speed I also decreased running time again until my body adjusted. Your heart rate and how you feel will guide you!
Eventually, after a few consistent months, I worked up to running 10 minutes at a time, then 15, then 20. I remember when I ran two miles for the first time without stopping, and it felt like such a victory. During the lockdown days of the pandemic, I ran on the treadmill in my parent’s basement, which I found easier than running outside. Over those months in quarantine in 2020, I worked up to running 40 (YES, 40!) minutes at a time without stopping.
I’m not sure I can fully describe how it felt to be running for that long, no matter how slow my pace was. Ecstatic. Surreal. Proud. Those are some of the words that come to mind when I think back on those days. I’d gone from not being about to walk across campus without feeling winded to running for forty minutes straight. Granted, it took me about a year of committed training to get there, but I did it! I trained my body to run with POTS in a gradual and safe way with the initial guidance from my doctors.
Where I’m At Today
Jump ahead two years later (Jan. 2022) and I’m still running with POTS. And with cross-training like swimming, biking, and walking, plus a few days of strength training each week, I feel the closest to my pre-POTS shape than ever.
Actually, I may even be in better shape now judging by my resting heart rate, but I can’t tell for sure. I mean, just the other day I ran a 5k distance and my average heart rate, according to my FitBit, was 153 bpm. I can’t even believe that as I write it, honestly. I always hoped I’d get to this point someday, but I never knew if it was possible for me. This year, I have the goal of running in at least one 5k. I won’t come in second place again, but I’m confident that I’ll finish. And I’ll be running!!!
Now, was it all smooth sailing along the way? Nope. I had bad days where my heart rate just wouldn’t stay down, or where my pain got the better of me. I had a big setback in June 2021 when I had surgery for endometriosis and recovery took longer than I’d planned for. And there were some days where negative self-talk got me down, fueled by seeing other girls my age (or much older–kudos to them!) pass me going much faster than I.
But what kept me grounded and picked me back on up those tough days was my goal. My vision of myself running and feeling good and strong during it. I focused so hard on that version of myself.
So, to wrap up this long post, three years ago I wasn’t sure if I’d ever run like I used to with my new POTS diagnosis. But here I am, doing exactly that. In those three years, I learned that life with a chronic illness doesn’t always have to mean that we need to give up certain things forever. We can’t predict where we’ll be one, three, five, or ten years down the road. Sure, the possibility exists that we might not be much better. But we could also find ourselves in a much better place too. Instead of thinking, “I’ll never do (blank) again,” I now think, “I can’t do (blank) today, but another day might be different.” This running with POTS journey has taught me that, and I truly believe in it.
Thank you for reading if you’ve made it this far! Let me know in the comments below if you have any questions about my experience, or if you’re a runner with POTS too and just want to say hi!
Also, for those that are interested, below I’ve listed my essential gear for running with POTS. All of these things are super important to me and my ability to run with POTS successfully. I need to monitor my heart rate closely, wear gear that supports my feet and circulation, and stay hydrated.
- Polar H10 chest strap
- FitBit Smart Watch with GPS (Fitbit Sense and Fitbit Versa are two newer options)
- ASICS Women’s Gel-Kayano Running Shoes
- Vim & Vigr Compression Socks (I run with 15-20mmHg compression socks)
- Pedialyte Electrolyte Powder
Looking for something similar to read next? Check out my post about running my first 5k with POTS!