#possible heds

[cosmicdoesdoart]

I see people all the time talking about hEDS and the symptoms that come with it, but its never the ones that annoy me the most. Like yeah I hate how I only walked a mile and now my knee feels wrong, but can we talk about how I got halfway through my dinner and felt so sick and nauseous? Does nobody else experience this or does nobody just talk about it

[safety-in-sanctuary]

were my knees and hips and ankles evil in a fucking past life or something

[chronicallyickysicky]

i grieve the person i used to be sometimes even after 10 years. or more like i grieve the version of me that i thought i could be as a child.

[catsithkelpie]

How does one relocate their shoulder/shoulderblade/both? My left shoulder has been hurting for days and no matter what I do, I can't pop it into place again.

[safety-in-sanctuary]

i hate that standing makes my knees, ankles, and hips hurt because DAWG i LOVE cooking

i hate that chopping things up can end up fucking up my fingers or my wrist

i hate that picking up heavy pots makes me hurt and is also so dangerous because at a moments notice i can just drop to the ground or at least let go of the thing without control over that

cooking is one of the few things i still love even when it was a chore i was forced into as a child

just let me cook in peace AHHHHHHH

[franklinthemouse]

My knees hurt so much right now it's not even funny

[countkunt]

went to the rheumatologist to see if i have EDS or an autoimmune disorder, bloodwork came back hla b27 antigen positive, and i am in fact hypermobile. she would not test me for hEDS(???) despite agreeing i have many of the symptoms, but it's looking like it's not "or" but "both."

and sacroilitis too <3

[ruebedo-iosis]

Medical Update

My news wasn't good.

I didn't have enough proof, according to them. Despite frequently asking them... Demanding them to log it in. Asking at my next appointment if it's there and actually logged... Only to find out they didn't.

Not for the constant chronic pain.

Not for the frequent heart rate spikes when transitioning position.

Not the vascular issues specialists said I had, but because it wasn't what they were 'supposed to be looking for', didn't get properly communicated or logged by my primary.

Not for the frequent misalignments or joint slipping.

Not for my horrid gastric problems.

And the audacity of it all. Is that they needed the symptoms to afflict more than just having 'hyper'mobility'... What do they think the other reports are?... They gave examples such as vision degradation... I have that... And even going as far to state it has to be 'life changing'.... How is this not? I can't read or draw frequently like I used to. I can't go on hikes or biking like I want. Foods I love are now risky to eat. How is that not life changing enough? I can't physically work or do many things on my own anymore. I may be striving for independence, but it's not something I can sustain without a fallback.... I hate this medical discrepancy and lack of communication.

I'm not doing great. I can't afford jack diddle... I just want them to actually write it down. To confirm what's been discovered and said. That's all I've actively pushed for.

I guess not yet.... If anyone has recommendations for people willing to listen and document (heavily suspected to be Ehllers Danlos : Hypermobile ) near Mid-Michigan, or a consultation price range out of pocket. That'd be extremely nice.

-REI speaks about problems