As I’ve talked about on Instagram and Twitter, I am trying a POTS exercise program. It is designed to help POTS patients reduce symptoms and maybe even retrain the heart to react to activity correctly. Let me make this clear before we get started: I am not a medical professional. I am doing this under direction from my medical team. If you have POTS and are thinking about trying this exercise protocol, talk to your doctor.

I’ve decided to record my thoughts here in diary-form so I have a record of the experience, to help any other POTS patients who might feel at a loss like me, and to raise awareness for this rare disease.

All POTS Exercise Protocol Diaries

Background: I have a condition called postular orthostatic tachycardia syndrome. I have a high resting heart rate and low-to-normal blood pressure and when I go from resting to active my heart rates gets very high very fast. It also gets worse when I feel warm, which can be when it’s warm outside or even if I have a hot shower. Hot tubs are off the table. POTS can cause nausea, diarrhea, fainting, dizziness, you get it. It’s not very pleasant. It’s a rare (or at least under-diagnosed) condition. This is only my third year having it, and it’s extremely annoying.

My physical therapist suggested I try the Children Hospital of Philadelphia’s POTS exercise protocol, which has been suggested to me in the past. My joints are in better condition now than they were in previous years, so it is actually feasible to try. So that’s where we are.

May 4, 2019, Day 0: Well, here we are. It’s happening. I’ve joined a gym, I’m all set, and tomorrow I’m going to start this program. I would be lying if I said I wasn’t nervous. Last week, I started doing some of the strength training exercises to ease into this program, and I’m so glad I did. They were difficult! I lost a lot of progress when I was ill in December, and while my aquatherapy has helped a lot with that, I hadn’t done exercises like these in a long time. Maybe even since before my 2017 knee surgery.

But I can’t go on living like this. When we started having temperatures in the 50s, my heart rate started increasing and causing the associated symptoms – nausea, dizziness, etc. As I said to my physical therapist last week, it wasn’t even May and I was already over the warm weather. And it’s New England, so it hasn’t even been properly warm yet.

So tomorrow I start. Pool, controlled cardio, strength training, repeat. It sounds simple, but when your health is anything but, something as simple as a workout can be nerve-wracking.

POTS Exercise Protocol Diary: Week 1

Day 1, May 5, 2019: I’ve officially started! I went to the gym and did the first day of the plan. It was on the recumbent bike, and I did 10 minutes warm up, 3 minutes with heart rate of 125-145, 2 minutes recovery (lower than 125), another 3 minutes with 125-145, and finally another 10 minutes of warm up. Like with real life, it was difficult to get my heart rate down once I got it up to ~140! It wanted to keep increasing and I had to majorly reduce my speed and resistance. I also, of course, did stretching before and after. I really don’t need any unnecessary injuries!

The hardest bit, honestly, was the mental side of it. I felt strangely nervous going in. (Of course, it doesn’t help that I have generalized anxiety disorder.) The workout itself was super easy, especially because it doesn’t take much to get my heart rate up, and the whole point of this protocol is the heart rate.

Pain-wise, my biggest problem joints (right ankle and knee) hurt. Hopefully it’s just a part of adjusting to the work!

Day 2, May 6, 2019: Today was my first full strength training day. I didn’t go to the gym, as I don’t have to on strength training days because the protocol resources include activities I can do at home. So I did the strength training exercises (~20 minutes) and then did a fully ~20 minutes of yoga! I’m trying to get back into yoga because it’s so good for my arthritis body, but I’m still adjusting to having 2 fused ankles. Definitely changes yoga!

All that to say – I have increased pain tonight. The muscles in my back hurt, my ankle hurts, my bad knee hurts. My hurting muscles don’t feel like good-hurt; it’s not a my-muscles-are-working-harder-than-usual pain. Hopefully this isn’t an indication of things to come!

Day 3, May 7, 2019 – I got a message from my choir little Emmie this morning and it turns out SHE did an exercise protocol and, in her words, it changed her life. She did a different one than me, but that does give me hope. It’s hard right now, at the very beginning, to see the light at the end of the tunnel, so hearing that from her was really nice. She was so excited to hear that I’m trying it!

PS – I’m typing this on my phone while doing my warm-up in today’s workout. Go me!

Day 4, May 8, 2019 – I can’t believe that it is day 4 and I’ve already hit my first day where I’m in so much pain that I don’t want to do my strength training tonight. I need to because that’s how this is going to be: I have to push through. And there are going to be days where I feel worse, so I need to save my “bank” of days when I skip my workout due to pain/illness. (Note: I will never actually skip a workout. Even if I don’t do a workout one day or one week, I will do it when I get back to it. There’s no skipping – just postponing!)

Day 5, May 9, 2019 – I have completed the first week of workouts!! The next 2 days are my days off, but even then, they’re not off off. I have to move. I’ll probably go for a walk tomorrow and then to the pool on Saturday to do my aquatherapy. I’ve been having a few bad pain + mental health days, and I’m sure that doing this program has contributed to that.

I’ve been watching a lot of Michelle Khare videos to inspire me. She does so many extreme challenges and workout programs that last over weeks, and that’s helping me get through. Basically, at day 3 she felt this way, but at week 4 she felt a completely different way. I’m in the trenches now, as I just finished the first week. It (supposedly) gets better.

POTS Exercise Protocol Diary: Week 2

May 12, 2019 – I have officially kicked off week 2! It was pouring all day today, which was the perfect day to curl up with a good book, but I dragged myself to the gym. (Well, to be honest, my dad drove him.) This week, my workouts are 5-10 minutes warm-up, 4 minutes with a heart rate of 125-145, 3 minutes of recovery, 4 minutes at that heart rate again, and 5-10 of cool down. Due to my overall lack of athletic history, as well as my arthritis, I’ve been doing the full 10 minutes of warm-up and cool-down. What was nice about this workout is that I actually got to have a real recovery between that goal heart rate sessions. With only 2 minutes of recovery last week, I barely got my heart rate down below 125 before it was time to get it back up again. It still took a while to get my heart rate down for that recovery, but I was able to have a little bit of a rest.

I don’t want to write in this every day because it will become a really long post, but I do want to record how it has been going. So, in the business of sharing, on my off-days I did 30 minutes of yoga through Yoga with Adriene’s channel on Friday and did my aquatherapy on Saturday. I’m trying to work back up to being able to go to an actual yoga class, so I’m glad Adriene’s channel has so many options, both in terms of what type of yoga as well as in terms of length.

May 16, 2019 – Well, I’m basically 2 weeks in and I’m already cheating. Basically, today is supposed to be a gym day. But my parents are out of town, so I’m on dog duty (2 walks thanks to a dog walker) and I’m meeting my cousin for coffee after work today. And I might have been able to increase my steroids this week(!!!) but I’m not at a point where my body can handle 2 dog walks, my commute (which includes a fair walk), and walking from my office to meet my cousin. So I’m counting all these walks as my workout today! Especially because tomorrow I have an 8-hour work day on top of dog walking, so I won’t be able to handle doing my workout tomorrow. I’m counting this as cheating because I’m supposed to be doing recumbent bike and not walking.

POTS Exercise Protocol Diary: Week 3

May 19, 2019: Today kicked off week 3, and it’s also the first workout I’ve done that actually felt like a proper workout! This week, my POTS workouts are 10 minutes of warm up, 5 minutes of 125-145 bpm heart rate, 3 minutes of recovery (below 125), 5 minutes of 125-145, and 10 minutes of cool down. I’m still doing the recumbent bike only, and will for another 5ish weeks.

May 21, 2019: I think I need to stop taking salt pills on days that I do my exercise protocol workouts! I’m taking them to help with my POTS symptoms on warm days and/or before my morning commute. I knew that I shouldn’t take them right before I do these workouts because the point of them is to have a certain heart rate with certain levels of exertion, and the salt pills help keep my heart rate down. I hoped that taking a pill in the morning and working out in the afternoon would be enough time in between, but I really struggled with keeping my heart rate between 125 and 145 for 5 minutes today. (I haven’t even been taking the salt pills for 2 weeks, so I’m still getting the hang of when I do and don’t need them.) And the whole point of doing this program is to train my heart to have the appropriate response, ideally without help other than my beta blockers. But today the extra effort required for the workout to get to that heart rate with the salt pill in my system really irritated my ankle. So I’m going to have to make that adjustment, which is a bummer for my POTS symptoms during my commute. But I’m not doing this protocol for sh*ts and giggles!

POTS Exercise Protocol Diary: Week 4

May 26, 2019: Guys … I’ve made it to week 4. FOUR! I’m pretty impressed with myself, not going to lie. Especially because today I had to drive 40 minutes one-way to go to the gym. I’m up in Maine for the week of Memorial Day, and our house is in the middle of the woods. Like, the closest gym I have access to is 40 minutes away. And it’s the gym of my grandma’s retirement community. That’s how dedicated I am to this protocol. I’m not going to let my beloved Maine woods stop me from possibly having better POTS symptoms in 4-7 months!

I will say that one thing I don’t like is that while the gym I went to today had a recumbent bike (I’m almost halfway to being done with it!), it’s a different model than either of the gyms I use in Boston have. So now I have been to 3 separate gyms and they have each have different recumbent bikes – even though the 2 I use in Boston are a part of the same franchise, but I digress – which means that there are 3 separate resistance modes. Basically, what I’m saying is that level 1 resistance at 1 gym is different from level 1 at another, and so on for each level of resistance. Which is difficult because it makes it harder for me to figure out what level of resistance I should be using to get my heart rate up. And if I do too much resistance, it really irritates my ankle and knee(s). These are the problems of an arthritis patient trying to exercise!

That being said, today’s workout was 10-minute warm-up, 6 minutes with my heart rate at 125-145 bpm, 3-minute recovery, 5 minutes with my heart rate up again, and then a 10-minute cool-down. On Tuesday, that 6 minutes will be 7, and that will be the same on Thursday. Those workouts are going to be a bit trickier, as I’m working (from Maine) this week, so once I finish at 2, I’ll have to drive/get one of my parents to drive me into Orono to workout. So my short days will actually be long ones! But I’ll be damned if I let this stop me from possibly feeling better.

June 2, 2019 – I finished the first month!! The last week wasn’t as structured as the last few ones because I was in Maine (so I did workout, 4 days off, workout, 2 days off) but I got back to Boston today and was at the gym within an hour of returning. I’m really proud of myself for sticking with it because it’s HARD. My ankle and knee hurt (I might need a cortisone injection) but I did it. I stuck with it.

It’s going to get tricky this week. Today, the workout was 10 min warm-up, 7 min base pace, 3 min recovery, 5 min base pace, and 10 min cool down. But Tuesday’s workout is going to be 40 min with more up and down than I’m used to. By the end of the second month, my workouts will be more than an hour each. That might sound normal or short to some people, though to me it’s a lot. So I need to emotionally prepare myself for that.

But now I’m going to get an iced coffee as a reward for sticking with it. Talk to you next month!

All POTS Exercise Protocol Diaries

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POTS and Heat Intolerance, 30 Things about Living with POTS, Chronically Ill Tips: What To Do When a Doctor Isn’t Listening to You, Chronic Illness and Mental Health