So happy to say that I finished month 5 of this POTS exercise protocol! I’m officially at the point where it might start working. I won’t get a definitive picture of if it’s working or not until it gets really warm. I’ll hopefully start seeing signs before summer, but it will take summer before I can be 100% sure. Last year, I started having increased POTS symptoms in spring. Even if my summer symptoms don’t change, I’ll take it if I feel improvement in spring!
That being said, I’m happy with how this month went. I started doing some elliptical workouts, which was nerveracking but exciting. But I’ll get into all of that in this post, so keep on reading.
All POTS exercise protocol diaries
As a reminder, I am not a medical professional! I am following a plan created by medical professionals as recommended by my medical team. I am keeping this diary to keep me accountable and to help other patients see what my experience is. Please talk to your doctor before starting your own protocol!
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POTS Exercise Protocol Diary: Pre-Month 5
Monday, January 6, 2020 – I am back in the gym! December was very rough with some extra life factors, the holidays, traveling for them, and my Rituxan running out. It was all I could do to go to work every day, not to mention blog or go to the gym. I hope that month 5 goes a little smoother than month 4 did (which I think took 6-7 weeks to do) but we will see. But because I took so long off, I am spending this week re-accumulating my body with the gym again. My plan today is to do 20 minutes on the recumbent bike and then 15-20 more minutes ideally on the upright bike. If I don’t feel up to that, then I’ll continue on the recumbent bike. My focus today is on low heart rate and just getting my body used to working out again. Hopefully by next week, I will be able to start month 5 in earnest. As an additional note, if you get bored while working out like I do, I suggest listening to an audiobook or podcast! I personally listen to podcasts while at work so I listen to books while working out. I’m currently listening to The Amber Spyglass on Audible.
Thursday, January 9, 2020 – Monday’s workout went well! I was a little sore afterwards, but no more than I expected. So today I’m doing 40 minutes on the upright bike. Once again, I’m just focusing on getting my body re-aquatinted with the movement, so I’m trying to keep my heart rate below 130 or, if I do a resistance level of 2 or 3, below 140.
What every POTS syndrome patient needs for the summer
POTS Exercise Protocol Diary: Week 1
Thursday, January 23, 2020 – After a few rough weeks, I’m back to the gym for week 1. I’ve been thinking about it and I think that this month is the first but not the last that I will have to vary from the plan. This month is the first that I’m supposed to do elliptical training, but upright exercise is murder on my knees and ankles. Today, I’m doing 40 minutes on the upright bike: 10 warm-up, 20 of 125-145 BPM HR, and 10 cool-down. I’m doing this to get my body back to heart-rate training like I was before (months ago … yikes). Book update: now listening to Highland Raven!
Monday, January 27, 2020 – Back at it! I was going to come to the gym over the weekend, but we got a storm, which my arthritis reacted to per usual. I’ve decided that at my next weekend workout, I’m going to try doing 10-15 minutes on the elliptical and do the rest on the bike. I want to do that on a day when I don’t have to work the next day in case it goes poorly, and I want to try it in small amounts. Today is my usual 45-50 minute up-right bike workout.
POTS Exercise Protocol Diary: Week 2
Monday, February 3, 2020 – Onto week 2! This week, I’m trying to do more like the CHOP protocol wants. Today I’m doing 60 minutes on the upright bike, with 40-minutes of my heart rate at 125-150 BPM. It feels okay at the moment (I’m in my 10-minute cool down as I type this), but we’ll see how I feel in an hour or a day. Later this week, I’ll be starting some (short) elliptical work! I’m excited to move onto that next level of this protocol. For those who are wondering, I’m now listening to The Secrets We Kept.
Sunday, February 9, 2010 – I did my first elliptical workout today! I am, as expected, exhausted. I tried to go really slow, but even going slowly and not doing any resistance levels, my heart rate kept going up to 150. No joke, the entire time I was on the elliptical, my heart rate never went below 130. But this isn’t surprising. The thing about POTS is that your heart rate is okay when you’re lying down or sitting and then it increases by over 30 BPM when you go from that position to standing. In fact, the test they do for POTS is called a tilt-table test, which is exactly what it sounds like: they lie you on a table and title you at different positions to see how your body reacts. All of this to say that an extra high heart rate during elliptical training was expected! Not fun, but expected. My next workout (which will hopefully be Tuesday) will be back at the upright bike and I’ll alternate the two for the rest of the month.
Tuesday, February 11, 2020 – Time to finish week 2! Post-elliptical was okay. I wasn’t too sore after Sunday’s workout, but I was exhausted. I took 2 naps on Sunday and another one yesterday. Today is back to the upright bike with a 55-minute workout.
POTS Exercise Protocol Diary: Week 3
Saturday, February 15 – Week 3 is going to be a difficult one. I’m supposed to do an 80-minute workout today, but that doesn’t seem likely. I’m having an arthritis flare in my jaw, which makes everything difficult because it’s so painful. But I’m here! I did 10 minutes on the elliptical and now I’m on the upright bike for hopefully 50 minutes, but at least 40. But that (and the jaw arthritis) isn’t the only reason why it will be a tough week: I’m supposed to work out on Monday, Tuesday, and Thursday. And ideally on Wednesday, too, but that’s not happening.
Monday, February 17 – Day 2 is done! I did 23 minutes on the elliptical. I did a 10-minute warm-up (which for now on the elliptical is HR below 130 BPM), 3 minutes of 130-150 BPM, and a 10-minute cool-down (same HR goal as the warm-up). It was a bit easier simply because I worked out in the morning, and I take a salt pill in the morning. Yes, if I let it, my HR would go above 130, but it was pretty easy to keep it below that. Ideally, I’ll be able to keep it below 125 within a few weeks. It’s an exciting discovery!
Tuesday, February 18 – In a brand new experience for me, I’m back at the gym 2 days in a row. Today is a high-heart rate workout day. I’ll do 10 minutes of warm-up and at the end 10 minutes of cool-down. In between, I’ll do 35 minutes with my heart rate of 140-170. I’m on the upright bike for this. Hopefully, all will go well. I’m channeling my frustration at my jaw into this workout!
30 things about living with POTS
POTS Exercise Protocol Diary: Week 4
Sunday, March 1, 2020 – Time to finish this month! I was in Maine last week, and the only free time I had was spent with family (which was a good thing). But I have one week left for this month, which is exciting. I’m supposed to spend 55 minutes on the elliptical, but given my knees and ankles, I’ll aim for 30 and the other 25 on the upright bike. I do have the added bonus of being on a higher steroid dose due to my jaw, which is currently making me feel very antsy because I’ve been on such a low dose.
I have a really good motivation in sticking with this week: next Monday, I’m having a very minor procedure. It’s so minor that they normally don’t do it with anesthesia, but I need to have some. It won’t be general – more the anesthesia used for procedures like endoscopies and colonoscopies. I don’t care as long as I’m not awake during it! So my hope is that I can stick with my workouts this week because I don’t know exactly how I’m going to feel next week. I might be fine! Or, it might mess me up for days. (Autoimmune diseases don’t like any form of anesthesia.) I’m now listening to The Song of Achilles.
Saturday, March 7, 2020 – Back at it! I couldn’t go yesterday (I went to the State House on Thursday for an advocacy event, which took a LOT out of me) so I’m here today and will be again tomorrow. I did 35 minutes on the elliptical and now I’m doing 35 minutes on the upright bike. I’m glad that I’m able to finish this month now because coronavirus has come to Boston, and my rheumatologist might make me stop going next week. It’s okay, though; if I have to take a break from this protocol, it might as well be when my infusion is out of my system.
Sunday, March 8, 2020 – Last! Workout! I’m currently doing a 10-minute warm-up upright bike ride. When I finish this, I’ll aim for 40 minutes on the elliptical with a heart rate of 140-170. Then I’ll come back to the bike for a 10-minute cool-down ride. If I can’t manage 40 minutes, then I’ll aim for 30.
Later … I did it! 40 minutes on the elliptical, HR below 170. I am disgustingly sweaty (no, seriously). I’m doing my cool-down bike ride now, and, as is usual when I do these high HR workouts, I’m having a hard time getting my heart rate down below 125 for the cool-down. While I’m mostly happy that my ankles and knees tolerated it, I’m also happy that I did 40 minutes on the elliptical. When I started doing elliptical workouts, it was difficult doing 10 minutes. And today I did 40! That feels really good emotionally (physically is a bit of a different story).
All POTS Exercise Protocol Diaries
Like this post? Check out:
Chronic Illness Advice: Resources for the Newly-Diagnosed Patient, Chronic Illness and Mental Health, Is Chronic Illness a Disability?, Answering Questions about Being Chronically Ill
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
Do you feel that this protocol has helped you? Also have POTS and find it very difficult. Do you also have problems using your arms?