EDS awareness

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EDS awareness
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What's New in EDS awareness
Community Voices

Little Bit of Progress.

<p>Little Bit of Progress.</p>
27 people are talking about this
Community Voices

Hi , just to say hello😁 #EDSAwareness

I’m new here and I am looking forward to meeting fellow EDS’ers! I hope you have the best day you can 😁

3 people are talking about this
Community Voices

Winter is here

I know this since I feel like a broken werewolf, you know transformed but with out the abilities 😂
Bed rest is my normal an don’t even want to medicate
Guess I’m looking to re discover myself to see if the medication is worth it, in other words am I medicating to preserve a broken me or can I do better ?

But self care has gone down hill an the fog is so fuckin present that I can’t remember what I was thinking a few bloody seconds earlier! Talk about annoying right?
An no money to boot to pay out of pocket medical treatments that somehow those greedy ass morons ( caugh republican law makers ) have re written the laws to were medical practices can decline state aid now.

Seriously republicans lawmakers, they make me sick since they sold out an lost all decency when they were duped into believing or willingly fallowed a con man in favor of more money 💰 ( most actual republicans I still happen to think are fairly decent people unfortunately there’s a few bad apples that only care about $💰 )
Going have to throw that in since my grandparents are republicans but they were tricked by fear tactics an that promise of the 1950’s all over.
-We’re all fucked, so they can make a buck- should be the republicans moto eh.

#ChronicIllnessEDS #EhlersDanlosSyndrome #ChronicPain #EDSAwareness #HypermobileTypeEDS

4 people are talking about this
Community Voices

Epideral injections in back experience ?

So long story short I’m a Eds patient an my backs no good
Several herniations an yeah can’t walk really
Also only 34 an weight wise great ( try to keep it in check as extra weight doesn’t help anything )

So yeah can’t live like this and need releaf to even wash properly etc

So just did local cortisol injections again
In the neck this time,
An even local seditive well did little to help
Aka it hurt like a 🤬

So I’m wondering can I ask with some assurance to get a more general anstiesa ( spelling is wrong I think ) to help with local pain during the epidural or is that going to be wishful thinking?

I don’t want to skip them but seriously I don’t know if I can volunteerly get them unless I’m out cold
An I’m quite used to pain
Still doesn’t mean I volunteerly want to torture myself

#ChronicIllnessEDS #EhlersDanlosSyndrome #EDSAwareness #ChronicPain #BackPain

14 people are talking about this
Community Voices
Community Voices


I created this group in hopes to help others mange there life with EDS and other chronic illnesses. My main goal is to help spread awareness around rare disease/chronic illness. as well as break the stigma around disabled/chronically ill people.

My name is Alyssa Kelly and i had Hyper mobile type EDS and 6 of its comorbidity. I used to work as a nurse full time but i cannot do that anymore. I have been on a journey to try and figure out what my identity is besides being chronically ill or a nurse. My favorite color is yellow. And i happen to very good at painting and i love it. If you join please feel free to introduce yourself.




Community Voices

So coke a cola is supposed to make you sad 😢?

Just was watching tv an the coke commercial aired , the scene was one of all family an friends together experiencing something on a higher level, a relationship of pure bliss couples sharing and raising a family together emphasizing how through all the pandemic as long as you have that ( an a coke ) your ok.

Unfortunately one that is unattainable to me,
One I can only dream of,
One that requires give and take, an I can only take with very little give. ( one that every time I try an help I get new criticism on how I’m just slowing things down or not trying hard enough etc )

This is my reality as my body fails me in new an exciting way when I need it to be in its best form.

It festers up feelings alright, one of sadness an a harsh reality that some are truly meant as worthless, flawed , broken, just pawns on this game of life that is mearly a chess board ♟

Damaged goods 😪
Thanks coke, I really needed a reminder of what I can not attain

#EhlersDanlosSyndrome #EDSAwareness #ChronicIllnessEDS #HypermobileTypeEDS #EDSers #ChronicSpinePain #ChronicIllnessEDS #Depression

6 people are talking about this
Community Voices

Accomplishment vs pain- the trade off

So not to toot my own horn but today I was able to get shiplap on the ceiling of a room, it took just about everything I had

That felt great an it was for my brother an his girlfriend so it meant a lot to be able to help

I know what it means as I’m up writing this in absolute pain/ agony at 3 am an can’t find a comfortable spot to rest

I know I should of maybe skipped working on it health wise but I needed to help my dad put them up an again it felt good to be useful again

Brain fog uh hate it so much

But how does everyone else balence the pain an sense of accomplishment? ( not used to being useful, everyday is more of a consumer of charity vs giver of charity )

It gets worse all the time so much so I don’t even feel like taking my meds anymore though 😪

Guess I need some personal perspective from others that have maybe walked this road a bit longer an not faultered
But 34 an I feel I’m out of juice.

Thanks #EhlersDanlosSyndrome #EDSAwareness #ChronicIllnessEDS #HypermobileTypeEDS #EDSers

13 people are talking about this
Community Voices

Eds an car crash

So yup I have Eds an crashed my car, literally on the way back from pt 😂 but yeah I can’t bend over an left hip hurts more then usual

Wondering if it is worth pursuing more or just tough it out

What’s the worst that could of happened?

Wreck was at 35-40 mph an no airbag deployment but yeah it stopped on a dime 😂 ah but seriously I’m so spent from drs and definitely don’t want to let them no it was a wreck since they see $ signs an make me pay out of pocket vs insurance

But yeah legs hurt hip an pelvis and back and abs an neck an ribs 😂

What to do?

#EDSAwareness #ChronicIllnessEDS #HypermobileTypeEDS

8 people are talking about this
Community Voices

Eds pain getting worse?

Anyone else experiencing more pain in the summer? I’m used to it but it’s just getting worse. Like shooting pain randomly plus can’t really walk since my legs are just feeling like rotten wood 🪵

Wondering if it’s actually Eds or maybe something else but I’m so spent going to drs that just chalk it up to brain or Eds, I just can’t keep doing it I’m getting spent.

#EDSAwareness #ChronicIllnessEDS #HypermobileTypeEDS #EDSers #PainManagement

4 people are talking about this