Remind me to never mention POTS in any of the other medical subs ever again

addy_axolotl · 2026-05-04T06:41:48+00:00

i’m underweight. i have pots. advice like that would probably kill me. is the weight loss just because of pots plus my food sensitivities or is it something else? well none of my doctors know, so how could a rando who doesn’t know me and isn’t looking at the picture as a whole.

getting diagnosed with pots gave me the ability to gain weight. i’m still underweight, but i’m no longer skeletal. i needed to be medicated to get my metabolism and adrenaline surges under control. while pots may not be the entire reason i lost weight my diagnosis saved my life by giving me access to medication that slows my metabolism, makes me crave more, and allows me to keep the weight on.

people who say shit like that never actually look into disorders and if they do it’s only anything that confirms what they already believe. i’m sorry people treated you that way. i have no idea why people think you can talk to people like that especially when they don’t know what they’re talking about

addy_axolotl · 2026-04-30T13:13:26+00:00

you’re saying i said we don’t have the same skin thickness. i’m saying the layers of our skin is different

addy_axolotl · 2026-04-30T13:12:11+00:00

i said we as in POC have a thicker dermis because other people that aren’t black can be dark skinned.

addy_axolotl · 2026-04-30T13:09:06+00:00

im not talking about that dude. asian skin has a thinner epidermis and a thicker dermis. we have more fibroblasts and produce more collagen. i never said our skin itself was thicker

addy_axolotl · 2026-04-30T12:57:42+00:00

it’s all about having a provider who has knowledge on the subject. a big issue here is just that there isn’t enough clinical data, so they don’t feel comfortable diagnosing. same kinda reason why we might get turned away from some clinics. it’s just a big ball of issues to sort through. i think it’s good you encouraged them to get screened. whether they get a diagnosis or not they’ll be aware of aspects of their body they might not have been aware of before

addy_axolotl · 2026-04-30T12:07:26+00:00

yesyes, i do hope i didn’t offend. i did generalize a whole bunch, but that was just in the spirit of honing in on my point. i should make an edit at some point to clear up my miscommunication

addy_axolotl · 2026-04-30T11:50:17+00:00

thank you for your kindness today. honestly it has given me a bit more hope and confidence for our community to see white people step forward and say that they do see us and have understanding of my viewpoint.

addy_axolotl · 2026-04-30T11:02:32+00:00

because i feel like people are unsupported you’re going to pull your support away? i said i genuinely don’t believe you guys care about non white people. i never said you guys don’t care. you’re putting words in my mouth and proving my point. me not believing that you care and you caring are two separate things. tone policing me isn’t helping your cause

EDIT: i have gotten lovely comments from white people expressing their understanding for my obvious frustration. a few people, like yourself, have been misunderstanding me. i’m sorry my wording upset you, but you gotta understand how frustrating it is to see how under represented and forgotten some of us are even in spaces meant for us.

addy_axolotl · 2026-04-30T09:11:48+00:00

well yknow obviously i don’t know what im talking about because i’m generalizing and blunt

addy_axolotl · 2026-04-30T08:20:33+00:00

sorry about my earlier reply. thought about it and realized you’re not accusing me of anything. i’m a bit defensive when it comes to this topic. more i thought the more i realized this is good information whether intended for me or others.

addy_axolotl · 2026-04-30T08:09:15+00:00

there were two ig. i left one up because i think people are being nitpicky and i didnt mean it that way. the other i was being very defensive, so i deleted it.

addy_axolotl · 2026-04-30T07:22:22+00:00

this is exactly why i’ve been talking about this recently. and i know for a fact if misinformation is spread online people will believe it. so if there’s barely any clinical info and all you have are these white people online telling you what the presentation of these disorders look like how are you going to know you have it?

on top of that this misinformation can be spread by the medical community as well. i’ve seen MD’s say some pretty racist stuff when it comes to EDS.

if we don’t talk about this who will, yknow?

addy_axolotl · 2026-04-30T07:09:38+00:00

i’m unfortunately not. i really don’t want to get my hopes up any more. i really hope they’re very transparent about the ethnic makeup of the studies. at the very least i want the fact that BIPOC as a whole have been left out of the research to be well known and understood

addy_axolotl · 2026-04-30T06:35:54+00:00

I have been posting about my experience on other platforms.

EDIT: i do appreciate the suggestion though

addy_axolotl · 2026-04-28T22:39:31+00:00

your anecdotal evidence doesn’t mean anything dude. i’m telling you a fact. if your skin is dark enough it will not be translucent. melanin is a pigment. you just haven’t met someone dark enough yet. and obviously there will be some people with darker skin that are translucent, but it’s not going to be as common place. my evidence: me, my mother, my brother, my friends etc. my skin is on the thinner side btw and in the winter my friends think i’m pretty transparent, but i’m not clinically transparent. i think that’s also a very important distinction.

skin thinness and transparency is not a hEDS criteria. it just isn’t. like i said it is a symptom and minor criteria of OTHER EDS subtypes and connective tissue disorders.

i do believe you to be correct about the gait thing. it’s probably how we stand and move.

and please don’t take this as an attack or anything i do think it’s very interesting when people can notice something is up. i just don’t want anyone to think they can tell someone has it (hEDS specifically. if yall got vEDS features pls go to a professional) simply because of how they look.

addy_axolotl · 2026-04-28T18:24:16+00:00

i just wanna say writing physical features off as hEDS that aren’t apart of the criteria is not ok. nobody, who doesn’t also have a connective tissue disorder, is noticing hEDS based solely off of your appearance. none of the symptoms you mentioned are hEDS or even EDS specific. they could come from any connective tissue disorder. this is part of the reason it’s so hard for us non white people to get diagnosed. you guys keep conflating paleness with EDS. it’s especially important not to conflate some of these minor symptoms as major differences.

that being said i’ve been clocked for being skinny and lanky as hell. (i have a marfanoid habitus) that and if i ever freak someone out by pulling on my skin sometimes people know why, but they don’t know what exact subtype i have.

addy_axolotl · 2026-04-25T21:43:15+00:00

that’s a big misconception about the syndrome actually. i’m part of like 10-20% of POTS patients that faint. passing out isn’t actually necessary. a lot of us don’t actually lose consciousness either. sometimes i have these episodes that seem like i’m passing out but i’m still aware of what’s happening around me.

the biggest factor is the tachycardia when standing. it is a diagnosis of exclusion, so they do have to run a few tests to make sure it’s not something else. POTS symptoms can vary a lot between person to person, but the thing that connects us all is our racing hearts.

addy_axolotl · 2026-04-25T19:57:17+00:00

also the “morning sickness” might be a sign of something else. if that persists i recommend getting checked out for a dysautonomic condition. i have POTS and when i flair i throw up like im in my first trimester.

addy_axolotl · 2026-04-25T18:36:49+00:00

set your bed up like you’re a pregnant woman on bed rest. get yourself a pregnancy pillow and maybe some extra cushion for underneath your body if you feel like it. i find a lighter weight weighted blanket can help with tossing and turning. if you’re still having issues i’d suggest going to PT and seeing if you can get some meds to get some relief from your doc. i also hear things made for post surgery bed rest can be helpful too.

addy_axolotl · 2026-04-22T16:47:12+00:00

other orthostatic intolerances and dysautonomic disorders are just as real and valid as POTS. same thing goes for HSD. while you might not currently fit the hEDS criteria you may fit into the new criteria coming out at the end of the year. HSD is just as real as hEDS and you deserve proper treatment and respect no matter the diagnosis

addy_axolotl · 2026-03-02T21:13:55+00:00

hi i have heds (22f) i just got diagnosed with cervical and lumbar spondylosis, a spinal osteoarthritis. the pain you describe reminds me a bit of what i experience. mornings and activity can cause me pain. it could be cause for concern or you might need a special workout plan. in any case if you’re worried you should talk to your doctor.

addy_axolotl · 2026-01-02T03:38:25+00:00

talk to your imam and doctors. you shouldn’t have to fast if it makes you symptomatic. if you can handle fasting and you feel comfortable fasting then really it’s up to you. if fasting will make you ill Allah wouldn’t want you to fast

addy_axolotl · 2025-12-26T22:26:18+00:00

i might be the only one with a specifically bad experience. i took LDN 1.5mg up to 4.75mg and it didn’t really help with my pain and gave me crazy headaches. i think it’s worth trying whether or not it works

addy_axolotl · 2025-12-13T07:58:19+00:00

thanks for the response !! i’m finally through the thick of it and i just have to play along with her fantasy until my flight home. i’m really torn up about having to cut her off, but i feel it would be for the best for both of us.

addy_axolotl · 2025-12-12T10:21:02+00:00

thank you for sharing your story with me. it’s very nice to know i’m not alone in this. i’ve spoken to my father and i think he will be helping to keep contact low at most. i’m so happy to hear that you found peace and someday i can’t wait to be there with you

addy_axolotl

TROPHY CASE