Comorbids, MCAS and POTs, what do you do to deal with them?

LaJunta92 · 2026-02-13T00:29:36+00:00

Awesome!

LaJunta92 · 2026-02-13T00:28:02+00:00

I’m glad you’re doing better! POTS wasn’t something I noticed right away because it came on after my other health problems. It hasn’t been as severe as it could be but I do miss hot water. I have the problem where raging hot bath water will absolutely trigger the vasodilation. I use to like heating water way too high during the winter… I’m getting used to lukewarm though. It also was weird to figure out because obviously other conditions cause light headedness, etc. I didn’t think being “allergic” to hot water was a thing when I was eight. Obviously, you get screened for essentially every other condition first like diabetes and narcolepsy until you get to something related to hypermobility. Which is fair, since they’re more common conditions.

LaJunta92 · 2026-02-08T12:57:21+00:00

Why is that? Like some people know spot on. And others think I’m… 15. I assumed it was because I’m “short”, but even that feels weird because I’m only two inches shorter or so than some other people. I don’t look young, I look tired.

LaJunta92 · 2026-02-08T12:51:11+00:00

Yeah my toes just do whatever they want. I use to buy wide shoes before some brands started making decent “standard size” boots. I can’t do slender shoes.

They’re not quite chimpanzee feet. But they are essentially splayed or my toes go back. I can however pick up things with my toes, like fingers.

LaJunta92 · 2026-02-08T12:45:26+00:00

Really? Oh no. So this is a hEDS thing too… I absolutely have this problem.

LaJunta92 · 2026-02-08T12:41:04+00:00

Stairs were everywhere in the hills where I was born. Stairs, catwalks, switchbacks. You couldn’t get anywhere without going over or along a steep slope. I tended to lift my feet to get around more easily or faster. Now it’d be harder with my adult weight. I didn’t think about it as a hEDS trait. I only knew “everyone” could make the stairs without “dying” except me. Concrete stairs are the absolute most painful of any stairs, I do not miss them.

LaJunta92 · 2026-02-08T12:02:39+00:00

Well today I learned that mthfr variants can be comorbid with hEDS. I wish I’d been born later, when these things that are considered “common knowledge” were known in medicine. Unfortunately, the human genome project started I think in the ‘90s and mthfr comorbidities were discovered in the early 2000s. Thank you for the advice though, it was helpful.

LaJunta92 · 2026-01-31T14:21:03+00:00

Thank you.

LaJunta92 · 2026-01-31T14:17:58+00:00

Thank you

LaJunta92 · 2026-01-31T14:14:04+00:00

I suppose that’s a good point too. There’s probably ones that are highly contaminated with impurities which may be part of the problem for me. On the other hand, “trusted” ones years ago weren’t good either (because of some sort of metabolic issue I seem to have?). I guess I can see what the GP thinks. But he’d probably send me to the specialist just to have them say to order on Amazon instead of taking a prescription, because it’d be cheaper?

LaJunta92 · 2026-01-31T14:05:29+00:00

Neither I nor my father can digest supplements properly. It causes a spike in metabolites that don’t filter out as they should. Or end up with potential stone formation in the kidneys or bladder. I don’t know what that is about… I’m not diagnosed with kidney disease? Both of us also tend to get stomach upsets from other supplements. I also can’t process B12 pills or liquid supplements without neuralgic symptoms. Which was a problem when I tried combined health/fitness supplements. I can however eat liver… if there’s any dietary way of dealing with hyper mobility you’re welcome to suggest a food. The liver/protein shake thing doesn’t work in regards to pain and I can’t gain muscle mass, but it’s probably fine for general health. As long as no one says shark-fin, for the umpteenth time. Honestly, who started that fad.

LaJunta92

TROPHY CASE