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&middot February 15, 2020

POTS Exercise Protocol Diaries

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POTS Exercise Protocol Diaries

Are you interested in learning more about trying an exercise protocol for your POTS? Talk to your doctor(s) before trying this, but if you want to know more from the patient perspective, check out my journals of my experience. In these posts, I’m doing the CHOP POTS protocol (Children’s Hospital of Pennsyvalnia).

POTS Exercise Protocol Diary: Month 1

Month 1: “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” Read more

POTS Exercise Protocol Diary: Month 2

Month 2: “Week 2 really took 2 weeks, or at least 1.5 weeks. I took Thursday the 13th off because I had a very bad pain day, and then I went to Maine for less than 48 hours. I didn’t want to drive 40 minutes one way to go to my grandma’s retirement community’s gym while I was only up there for such a short period time, so I started Week 2 on a Tuesday and came back to it 1 week later. Long story short, yesterday I started Week 3. The next few weeks are going to be a bit hectic, so I wanted to get in a workout when I could.” Read more

POTS Exercise Protocol Diary: Month 3 | Kate the (Almost) Great

Month 3: “I’m also worried that people will think that I feel better than I do because I’m going to the gym now. My pain isn’t improved because I’m going to the gym. I’m going in spite of my pain because my POTS is making me miserable. It’s not that my pain has gotten better and because of that my POTS is the bigger issue. It’s that my POTS is, for now, the bigger issue than the arthritis, which is a sign of how bad the POTS is, not how good the arthritis is.” Read more

POTS Exercise Protocol Diary: Month 4

Month 4: “First upright bike workout is in the books! It wasn’t bad, although it wasn’t easy, until I got off of the bike. I felt like I was going to fall over! I usually walk home from the gym (I don’t want to put people on the bus through Sweaty Kate, and also it’s only 2 stops so it already feels kind of like a waste of money) and stretch when I get home, but this time I stretched at the gym before walking home. And I so glad I did because I was so sore and tired when I got home that I didn’t trust myself to sit down before getting in the shower. I now understand why this month involves the recumbent and upright bikes: it’s too much of a change to expect patients to go straight to the upright.” Read more

POTS Exercise Protocol Diary: Month 5 | Kate the (Almost) Great, Boston Blog

Month 5: “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).” Read more

Note from November 2020: This protocol was paushed in March 2020 due to the COVID-19 pandemic. Not only did gyms close, but I’m immunosupressed, so I can’t go to a public space, let alone a gym, until the pandemic is passed. My dad did by an indoor upright bike, so I’m hoping to get back to the protocol in 2021, but for now it is paused. I will update this page once I start it back up again!

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Can we talk about fatigue for a sec? ⁣⁣⁣ ⁣ Fatigue Can we talk about fatigue for a sec? ⁣⁣⁣
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Fatigue is so much more than being tired. It's sleeping 10 hours at night and then struggling to stay awake during the day. It's trouble focusing because, even though you just had 3 cups of coffee, you're thinking about sleep. It's needing to factor rest in during the day because you have plans at night. ⁣⁣⁣
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It's a lot. ⁣⁣⁣⁣
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It's no secret that I have multiple chronic illnesses. But did you know that all of them - all 11+ of them - have fatigue as a symptom? Sometimes the fatigue is worse than the pain and, uh, I live with a lot of pain.⁣⁣
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This week had EVERYTHING 1️⃣ Cross-stitch during This week had EVERYTHING

1️⃣ Cross-stitch during virtual mass 
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3️⃣ Wednesday started at my foot doctor’s office and I left in a walking boot. Hopefully these 3 fractured bones will heal correctly this time 🤞🏻
4️⃣ Thursday started back at MGH for my annual neurology appointment + foot CT scan
5️⃣ Then I went up to Maine … 
6️⃣ to celebrate my grandma’s 85th birthday! 

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There's beauty everywhere, not just in the Maine w There's beauty everywhere, not just in the Maine woods. (Shocking to me, I know.) ⁣⁣⁣
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Weeks 15 of 2026 Weekly Just trying to get throug Weeks 15 of 2026 Weekly

Just trying to get through!

1️⃣ IVIG time
2️⃣ I got a hair cut last week and then I looked nice at one point!

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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.

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FAQ: What Is Subtalar Fusion Surgery? Background FAQ: What Is Subtalar Fusion Surgery? 

Background: I have tarsal coalition and rheumatoid arthritis and had subtalar fusion in my left foot in 2009 and in my right in 2018. While this was started because of the tarsal coalitions, it is a surgery that can help rheumatoid arthritis, too. 

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There will be times when you do everything you can There will be times when you do everything you can to feel better and it won't work. That's not a failing on your part.⁣⁣
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1️⃣ Hematology appointment 
2️⃣ PCP, after which an x-ray showed stress fractures in 3 bones 
3️⃣ Tea and cross-stitching

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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.

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1️⃣ Looking at Kate’s lap. There’s a medical bracelet on her wrist and a Kindle on her lap.
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Background: I have tarsal coalitions and rheumatoi Background: I have tarsal coalitions and rheumatoid arthritis in both of my feet, and I’ve had resection surgery and subtalar fusion surgeries. I am not a medical professional and am sharing my experience! 

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