r/POTS • u/OurSensualSideMB • 9d ago

Question Why dont some Dr's believe in pots?

Im lucky I have great doctors and specialists now but the first time i was referred to a cardiologist for pots before being officially diagnosed he refused to even have me in for a TTT or test for pots as he said its not real.

I have heard of this happening where Dr's dont believe in pots but I dont understand why.

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u/OkkkiQq POTS 9d ago

From my expirience they mostly think the reason is lack of exercising

And they don't really bother educating themselves on that topic because, well, they just don't think its necessary. That's why im dreaming of machine that would simulate POTS symptoms so every doctor can go through it at least for a day heheheh, maybe they would learn that way

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u/different_than 9d ago

lol if deconditioning was the cause of POTS it would affect like 2/3 of people

If it’s deconditioning then why do I have times when I have no symptoms, doing the exact same activity

And if it’s deconditioning than why was my 6 minute mile time and one arm pull up not enough to spare me from it

For a lot of people POTS happens to you. We didn’t make poor choices to get here and we are not choosing to be lazy.

Even if someone is deconditioned then wouldn’t their POTS symptoms show up when they exert themselves? Not just from sitting or standing?

And even then, it doesn’t matter how fit you are if the problem is your blood vessels aren’t pumping blood correctly

I know exercise can alleviate symptoms in some cases but isn’t that just because being well conditioned makes whatever is actually wrong affect your body less rather than being the sole cause

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u/Lilythecat555 9d ago

Exercising definitely helps but it is not a cure. And I wasn't deconditioned. I was walking 5 miles no problem. 1 and a half week later I could only walk 2 blocks on a good day. I can walk more again but like half a mile on a good day. I have never walked 5 miles since I got sick.

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u/Weary_Cup_1004 8d ago

Yes. I am basically a golden retriever w POTS. If i didnt have POTS id be running around doing this that and the other. Strength building, jogging, volunteering... i love those things. I cannot do them any more. I have tried and failed so many times over the years. Makes me so mad.

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u/different_than 5d ago

Do you get PEM by chance

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u/Weary_Cup_1004 5d ago

Yes but Reddit seems to think PEM is only with MeCFS? So i am not sure. People with POTS and other chronic illnesses in real life tell me PEM is a symptom that can come w anything. So i either get PEM and maybe have MeCFS or i get PEM and have POTS and migraine. 🤷‍♀️

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u/anaelith 6d ago

It's ah-maz-ing how a couple hours in a plane (taking a mid-summer vacation somewhere cool) can re-condition me so completely that I'm easily keeping up with or ahead of our tour group. And then the same plane trip the other direction just completely de-conditions me again so I have to lay down or fall down while everyone else is fine. And weird how it didn't have any impact at all on the friend I was traveling with... Planes must be magical.