u/trixieroyale

Bold question- would anyone who has one done be comfortable sharing their experience? I don’t have EDS, but I do have a rare multi-system genetic disease that mimics the symptoms that can wreak havoc on your intestinal system. Super not looking forward to this test but a little reassurance would go a long way right now 😩 (cross posted)

Anyone else have this problem? I (frail 34f) just had to change my tire and put a spare on in the pouring rain while my three grown men coworkers watched.

A normal person would just ask for help but of course, I have to be stubborn because girl power/imposter syndrome.

Now my whole body hurts and I have to finish my shift at work before driving six hours by myself tomorrow. I probably ruined my whole trip just by changing a tire and refusing to ask for help doing something that I know is physically outside of my wheelhouse.

Looking able bodied when you’re falling apart really frickin sucks.

Hi friends! Over the last few weeks I went from moderate symptoms to full blown flare for the first time and I am STRUGGLING. The interweb suggests a liquid diet but I’m a crunchy food/snacky stoner girl and struggle with liquids, plus my dysphagia is pretty bad right now.

I previously had a pretty bad ED and wasn’t able to eat for 48h straight last week due to feeling so ill. I’m worried about getting back into that habit, especially with how much stress my newly diagnosed genetic disease is causing :(

I saw gastro, I have a barium swallow scheduled for two weeks from now and a motility test next month, but I don’t know what to do in the mean time before I can get proper treatment.

Going grocery shopping after work today, does anyone have any non-liquid food recommendations that don’t wreck your insides?

Hi friends! Over the last few weeks I went from moderate symptoms to full blown gastroparesis and I am STRUGGLING. The interweb suggests a liquid diet but I’m a crunchy food/snacky stoner girl and struggle with liquids, plus my dysphagia is pretty bad right now.

I previously had a pretty bad ED and wasn’t able to eat for 48h straight last week due to feeling so ill. I’m worried about getting back into that habit, especially with how much stress my FLNA deficiency diagnosis is causing :(

Does anyone have any food recommendations that don’t wreck your insides? I saw gastro, I have a barium swallow scheduled two weeks from now and a motility test next month, but I don’t know what to do in the mean time before I can get proper treatment.

SOS

(Cross posted to the rare EDS sub)

Hi friends!

Saw gastro today and they ordered a bunch of tests, wondering who has had them done before and what kind of fun I have to look forward to.

We’re doing:

A gastric emptying scan

Barium swallow (modified/swallow pharynx)

Barium swallow (double contrast)

Obviously I can google what the tests entail but I was curious about first hand experience!

Motivated myself to conquer some severe executive dysfunction yesterday and clean as much of my house as I possibly could while I had the energy but now EVERYTHING hurts.

My lower back and knees from bending over, my neck and shoulders from holding my hands above my head with the vacuum hose, my hands from scrubbing the shower, etc.

Does anyone else gaslight themselves into performing every day activities like they’re totally fine, then do too much and suffer for days?

I (34f) look perfectly healthy so I feel uncomfortable telling people about my disease (I’m still convinced people will think I’m making it up for attention, who has a super rare and understudied genetic condition anyway?). It’s the worst at work, I’ll lift things that are way too heavy because I don’t want to admit my joints can’t handle it when one wrong move can throw me off for a week.

I just want to be normal, or at least live in a more understanding world. I didn’t ask my mother for shitty genetics or an invisible multi-system disease that’s slowly destroying my whole body.

/rant