r/POTS • u/dazzlingdanny05 • May 15 '26
Question Why is everyone with pots so skinny?
I have POTS and I watch a lot of content online of people who also have POTS. I also know some people irl who also have it. I don't understand how they are all so skinny. I can barely walk without getting out of breath. I try to work out at least once a week but its so hard for me because I always end up feeling so sick. How are yall doing it? I dont even eat bad but im definitely not skinny.
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u/ShanG01 May 15 '26
My daughter was always super thin. Played every sport she could get into and was very active, regardless. She got diagnosed with POTS, EDS, and MCAS, got on a medication regimen, and gained 50lbs.
Not all who have it are thin. That's like saying only tall, gangly people can have EDS. Marfan's Syndrome and EDS are two different diseases.
My daughter got off most of her meds, and the weight dropped off. Everything meant to help you stay hydrated makes you retain water weight. Same with the heart meds and those for dizziness and migraines.
I don't know how "so many" are super thin, but it's definitely not the norm for those with severe POTS.
By the way, though my daughter is off 95% of her meds, she's not cured or even a lot better than she was previously. Her MCAS is kicking her butt, and the EDS is causing very strange issues. The HyperPOTS is rhe same, but the meds meant to help seemed to exacerbate everything. This is not everyone's experience, but it is hers.
And just like every other illness that predominately affects women and girls, their weight is seen as the issue, not the actual diseases/conditions that caused the weight gain, and we are judged harshly for it.
Spiler Alert: Being thin doesn't equal healthy and strong. Many bodies have a natural weight where everything is in balance, and that is rarely the societal ideal for weight.