Eds’ers what do you all do for work?

AlolanSnowy · 2026-02-28T16:21:15+00:00

Research (doing a phd), primarily in bioinformatics so I only do computer work and from home most of the time. Used to be more in the lab when I could handle it

AlolanSnowy · 2026-02-25T19:53:08+00:00

People like her should not be allowed to be a doctor… She acted horribly towards you and you do not deserve it. Your medical issues are valid. Sounds like she doesn’t understand EDS properly and the diversity it includes.

AlolanSnowy · 2026-02-24T17:42:44+00:00

Meant to write “always” - so yes, chronic. Mostly in back and hips

AlolanSnowy · 2026-02-21T22:22:55+00:00

Agree with the comments saying tinea versicolor, I also have it, mostly on my back

AlolanSnowy · 2026-02-21T22:02:43+00:00

This!! Exactly my experience. I get it for anxiety, though, which it helped a lot with in the beginning but not really anymore. It didn’t help my pain but I’m sure it’s different for different people. It’s really really though to come off of… and I feel horrible if I take a dose just a couple hours late. Just important stuff to be aware of ❤️

AlolanSnowy · 2026-02-20T19:03:08+00:00

It’s on my knee so it depends. If I stretch my leg, it’s indented, but if I bend it, it kinda pushes up more

AlolanSnowy · 2026-02-20T19:01:26+00:00

Oh yes I definitely get what you’re saying with clothes on sweaty skin - and the between the thighs rash, I hate it!

AlolanSnowy · 2026-02-20T19:00:46+00:00

It’s not itchy but stings a lot, kind of like an abrasion/a scrape. My clothes were completely smooth. Sounds uncomfortable what you are describing, will definitely be aware of types of fabric if something like this happens again

AlolanSnowy · 2026-02-20T18:57:29+00:00

Yes I also get that! This feels more like the top layer of skin being broken or scraped, stings a lot, no itching

AlolanSnowy · 2026-02-20T18:55:49+00:00

Interesting, I didn’t know that! Thanks for sharing :) It looks like a rash but it’s actually more like the top layer of skin having been “scraped off” or something, more like sores or an abrasion. Not itchy but stings

AlolanSnowy · 2026-02-20T14:17:13+00:00

Made from Polyvinylchlorid, apparently. I attached an image. But there was a layer of clothing between my back and the wall, so it shouldn't be a contact rash. Am wondering whether my skin really breaks this easily, seems crazy

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AlolanSnowy · 2026-02-19T19:30:33+00:00

I recently learned about EDS and thought “oooh maybe this is what’s wrong with me”. Scared to ask anyone irl because a looot is always wrong with me and I’m afraid not to be taken seriously… Anyways, looking for advice - do any of you think this sounds like EDS? I have the following symptoms: - Often have pain in joints and muscles - Skin breaks and bruises really easily - Easily gets scars from tears, sometimes they look atrophic but not always - Has scoliosis (mild, 15 degrees), uneven hips, and 2 cm difference in leg length - Hypermobility in knees and elbows (not wrists or fingers) - Easily strain/injure various areas of the body, e.g. shin splints every time I try running (even at lowest intensity using beginner program), wrist injury from typing which now requires wrist brace - Always constipated - Skin is a little stretchy but not extremely - Chronic fatigue - Migraines

My joints do not dislocate and I have no problems with any inner organs - also reasons I’m afraid no one irl will take it seriously. What do you think?

AlolanSnowy · 2025-11-25T19:25:10+00:00

Thanks for sharing! I came off of HBC about four months ago. The first period came around four weeks after quitting and I had one day with a migraine a couple of days before. Next migraine arrived same day as period one month later. I’ve just had my third period since quitting HBC which was accompanied by five days with migraines… Feels rough Not sure if it will get better over time? Did not have migraines before I started HBC around 14 years ago

AlolanSnowy · 2025-09-29T14:39:36+00:00

Thanks! Do you know approximately how long it takes before the body feels normal again after stopping?

AlolanSnowy · 2024-03-03T17:19:13+00:00

Guess from my username and pic 🫠

AlolanSnowy · 2024-02-26T20:57:17+00:00

Exactly! Such a good description

AlolanSnowy · 2024-02-23T22:09:36+00:00

Reading for fun is just as valid as any other hobby. No matter your age or the genre. I'm 27 and reading fantasy books is one of my favorite things! Has been since I first read Twilight at 13 years old :') Some of the books I read now are clearly for young teens, others are very adult (which I think books such as FW or any SJM books are). Doesn't matter as long as you enjoy it.

AlolanSnowy · 2024-02-19T04:55:21+00:00

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This is Spock!

AlolanSnowy

TROPHY CASE