#eds stuff

[gilbrennilrowan]

So I have a connective tissue disorder (hEDS) that essentially means that my body is too stretchy. I started seeing a PT recently (for an unrelated thing) who happens to be very familiar with this condition. I don’t remember why but one of the things that comes with EDS is not responding to exercise normally. So you have to go really really slow to actually make progress

At my second appointment she gave me three exercises

For the first one I lay on my back, pull my lower stomach in and raise each leg 3 times. The second is basically the same but on my side. The third is on my stomach with my knees bent and raising each leg three times. That’s it. I’m supposed to do all of that once per day

And it’s hard 😭

[cuttlefishkitch]

so i grew up in gymnastics and many years later i'm (still) v hypermobile and discovered that most ppl aren't in constant pain but i'd pretty much convinced myself that my hypermobility, pain, etc etc was acquired from the sport and i couldn't have EDS (despite having Always Been Like This) but then i read your post and the bit about piezogenic papules and realized that, lo and behold, my feet do that!! so anyway now i'm feeling v validated abt my bullshit bones thank you for this

Of course!! No problem! I’m super happy I could help.

Also like, I used to ride horses as a kid. EDS is a degenerative condition, so it usually isn’t as bad when you’re little, especially since kids, in general, are a little bendier than adults. Plus, there are people out there who are hypermobile but don’t always have pain or the other symptoms I talked about. Pain is your body’s way of telling you something’s wrong and you should always do your best to listen to it and figure out what’s causing the pain. 

Sorry I ranted and got a little off-topic, but this stuff is neat and I like talking about it!!!

[maraeffect]

had another geneticist appt last week! they're sending me another genetic test to try and get closer to my diagnosis, so wish me luck! updating here so i can keep track ☺️

[maraeffect]

im printing out paper for my genetics appointment on monday and AAAAAAAA i’m really really nervous!!! but also excited!!! this appointment could change EVERYTHING for me !!

[mordinssolus]

I’m gonna start physical therapy soon. I even made an initial appointment. The diagnosis on the referral even says Ehlers Danlos so I guess that’s really real. I know this is a good first step but fuck y’all. Trying to actually put my health first is wild and I’m tired.

[trashylvania]

rly wish my rib would go back into place already so that i can breathe properly again jfc

[missangorian]

its weird because I’ve gotten so used to normalizing the pain I'm in that I can genuinely tell my mom that my joints aren’t bad, even when I dislocated my thumb making tea that morning. I’ve gotten used to ignoring my body and pushing through. My big toe feels like its broken if I wear shoes (any shoes) for more than a couple hours. I have to sit with my knees drawn up to my chest because its the only comfortable position for my hips. But I still regularly wonder if I'm faking?? Like maybe I’m just exaggerating, even though I threw up during class again today as a sheer pain response. I’ve gotten used to saying nothing, just, “it’s a better day today” or “it’s a bad day today.” I minimize my pain so much, even to my doctor, and I’m so tired of it. Its peverse that I find myself longingly googling wheelchairs because my legs hurt so damn much, but like??? I don’t know how to vocalize what I’m going through

[kaoticspoonie]

Just freaked out over spending money on my medical alert bracelet I have been putting off for over a year. Realized that it's about the same amount I spend on a pt appointment... I think it's because it is 'pretty' that I think of it as personal instead of medical expense.