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· 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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Having decades-long health problems sometimes mean Having decades-long health problems sometimes means coming across something in your health history that you completely forgot about⁣
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4. My kindle for wait time” 
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4️⃣ The reality of doing fun things with chronic illness and pain is that then you have to recover from the fun things. It took … a while. One million percent worth it, but this is why I don’t do big events on a regular basis. ⁣
5️⃣ And then I had to be a person again for an appointment!⁣
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On the one hand, you should always believe what pe On the one hand, you should always believe what people tell you about their bodies.⁣
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On the other hand, I’ve had so much ridiculous and unconnected health things happen that I do understand why people might not believe me.⁣
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Last week, I talked about how it surprised me how Last week, I talked about how it surprised me how systemic autoimmune arthritis can be. But something else that surprised me was how much pain can be caused by small things.⁣
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In this picture, I was getting ready to have an MRI on my knee. It has been bothering me a fair amount the last 6+ months, so I'm trying to do something about that. ⁣
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Unsurprisingly, some of the tissue is damaged, but it's not bad. What's probably causing it to bother me so much is a teeny tiny cyst. ⁣
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Baker's cysts are a type of cyst in the knee that are generally caused by arthritis. But having a cyst in my knee means that it's causing pressure on that damaged tissue. ⁣
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The body is a weird thing, and one of these weird things is developing tiny cysts that cause a lot of pain. ⁣
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If I met my newly diagnosed self for coffee ... ⁣
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I tell her how things would get worse before they got better. ⁣
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I'd tell her to stop eating gluten, dairy, corn, soy, and eggs immediately (although that would have been a lot harder in 2010, more than it even is now). ⁣
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I'd tell her that she still needs to keep advocating for herself. ⁣
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I'd tell her that having a diagnosis unfortunately doesn't mean everything automatically falls into place. ⁣
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I'd tell her that she'll develop many more illnesses but her quality of life will actually get significantly better. ⁣
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I'd tell her that she would eventually have to get her right foot fixed, although she does expect that.⁣
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I'd tell her that using a cane is not a sign of failure, but a tool to make life better.⁣
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(I did a sort of tongue-in-cheek post about this a while ago and thought I'd post a more serious one).⁣
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The thing that surprised me the most about autoimm The thing that surprised me the most about autoimmune arthritis is how systemic it is. ⁣
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Like with most things, it's one thing to know the fact and it's something else to experience it. ⁣
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Yes, my joints are affected (a lot). ⁣
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But I've had enough serious infections thats I have to see an immunologist because we need to be aware of my antibodies and I sometimes need help recovering from illnesses. ⁣
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And, yes, I see pulmonology because of my asthma, but we also have to keep an eye out on developing rheumatoid nodules in my lungs. (So far so good!)⁣
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Not to mention that, when I developed POTS, the hospital admitted me to run every heart test to make sure that, at 26, I wasn't experiencing heart failure. ⁣
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Plus, when I developed endometriosis, I also went through a number of GI tests because one theory was that I had ulcerative colitis. ⁣
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Anyway, RA is so much more than "just" joints. If it wasn't, I wouldn't have to kill my immune system every 3 months like I am in this picture.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣
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#AlmostGreatHealth #RheumatoidArthritis #RheumatoidDisease #Rheum #Autoimmune #AutoimmuneDisease #InvisibleIllness #ButYouDontLookSick #Sjogrens #SjogrensSyndrome #POTS #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia
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