u/TroubadourEnthusiast

Hi everyone! I've pretty much known my organs weren't situated right in my body since I was a kid, but never had the words to get anyone to take me seriously, and never heard about EDS or that hypermobility is a SYMPTOM, not its own category, and have only known that loose organs could possibly be attributed to something tangible, like my now-diagnosed EDS and hypermobility, for a few months now.

So anyways, other than keeping track of which organs are out of place and what that does to my body, what else is there to do? Any sort of symptom management out there anyone's heard of? I am *so* uncomfortable *everything* is out of place today except maybe my lungs

You've heard of the they're/there/their lesson, now prepare for the PALLET, PALATE, PALETTE lesson.

PALLET- The giant usually wooden, but sometimes plastic, boxes that are used to transport bulk goods, usually seen in grocery stores.

PALATE- This refers to either a particular sense of taste, OR the physical attribute- your soft palate and hard palate at the top of your mouth.

PALETTE- Painting thingy.

Hi there! I'm 24M just looking for a few tips. I've been diagnosed for about a decade but never really caught up to what exactly is affected; I have had what feels like inefficient and swollen, fighting organs pretty much since I was 8 or 9 years old. I have pelvic issues and stomach issues, and didn't get told that could be hypermobility I got told I was crazy and organs can't feel like that inside of you. I also struggle with functional tremors due to a "doctor's" cold-hearted screwup; they're the best they've been in 6 years, but it was almost 6 years when I finally got diagnosed and got treatment. The muscle spasms I get in my torso and pelvic region can also affect my organ function.

Anyways! I am GREAT at recognizing my hard limits. I have become very acquainted with them because I am TERRIFIED of hurting ANYONE. When the tremors got bad enough I practically sequestered myself away from other humans unless I was sitting, laying down, or sleeping.

I know RIGHT when my body is about to genuinely give out, I know what will push me over the edge, but I have NO idea how to listen to the whispers before the OH GOD STOP RUNNING ME RAGGED shout that happens right before I end up mostly bedridden for three days. ANYTHING you can share would be helpful; run of the mill tricks and any weird ones you may have regarding how to recognize those soft limits so I don't burn myself out, and if there ARE any ways to strengthen my organs or better equip myself for the discomfort, pain, and reduced function that comes with my organ stretchiness.

Anyways thanks for listening! I am in physical therapy and I'm as proactive as I can be about treatment, none of my symptoms are terrifying or bring up life-and-death stakes anymore, but I still have a GIANT chunk of missing information that only comes with experience acutely managing chronic illness symptoms.