Top Posts Tagged with #eds stuff

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 😭

#the point is to strengthen my core muscles bc I’ve apparently spent my whole life compensating with other muscles #when I did the last exercise for her she was like ‘oh after you do them for a while you won’t compensate anymore’ and I realized I was #compensating to even do that 😭#EDS stuff

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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!!!

#asks #anon #EDS stuff #i should probably make a legit tag #Anonymous

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 ☺️

#eds stuff #personal #chatter

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 !!

#chatter #cpunk #uhhh im gonna make a new tag for eds stuff #eds stuff

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.

#hopefully this helps and im at least able to straighten out my lower back #my si joints are always on fire #shut up lora #eds stuff

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

#trash.txt #eds stuff #i mean i'd like to clean some of my room or swim or something ugh #ehlers danlos problems #it feels like i'm being stabbed in my side #almost called my cardio bc i thought my heart meds weren't working but #once again my rib has subluxed which tbh is preferable to my heart messin up again #still sux tho

#eds stuff #personal #don't reblog

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.

#internalized ableism #eds stuff

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