EDSers

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    Community Voices

    Ring Splints!!

    <p>Ring Splints!!</p>
    2 people are talking about this
    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 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
    Community Voices
    Community Voices

    The lost men

    Hi, if you’re like me, a man, your journey to diagnosis with EDS or JHS might have been a rocky one. It’s taken over a decade of debating specialists. #HypermobileTypeEDS #EDSers #Men #Pain

    Community Voices

    Need some advice or help more aptly

    So yeah I’ll just get to it, I don’t know how to read others emotionally
    Intentions sure
    But I can’t emotionally connect with people
    And can’t date because of it ( forget for a second I’m useless due to EDS ISSUES )
    But I want to meet someone who knows maybe a soul mate
    But at times I almost feel I’m lost a drift
    Even I don’t know me anymore
    Just another thing Eds and brain fog and pain and my other issues have taken.

    I try to be upbeat nice but I’m just ignored

    I was at the mall the other day and was like I was invisible
    Everything was blurry going by
    Really weird huh?

    Ah 😔 #EDSAwareness #ChronicIllnessEDS #HypermobileTypeEDS #Upallnight #EDSers

    3 people are talking about this
    Community Voices

    Chronic conditions and just wanting to shoot ones self?

    Sorry for being morbid but I consider myself upbeat but a realistic person

    I can’t work, drs visit are now a chore more then ever and more complicated due to insurance changes
    I’m 33 with 0 to my name
    I just feel sometimes that maybe a good drink and a nice sunset with a 9 mm may be a fitting end to my story.

    Again not depressed just wanting to explore out loud the viewpoint I now see the world through

    As I don’t want to be a burden to anybody financially or medical wise so what’s one to do?

    I have good ideas for businesses but the energy isn’t there to advance them.

    What a 🤬 right?

    Oh well anyways always interested in others perspective
    #EDSAwareness #ChronicIllnessEDS #HypermobileTypeEDS #ChronicPain #EDSers

    11 people are talking about this
    Community Voices

    Eds and structural instability

    So I over did it today
    😔
    Shopping at Costco is dangerous apparently 😳
    As we unloaded the car I over loaded a bag and completely threw my ribs out of place subluxing them and pinched whatever was under them and had to deal with pain that had me wonder is this heart or frame?

    Had I not just had a nuclear stress test I’d of been really freaking out but it just reiterated how frail I’ve become and how living within my realm of normalcy struck home

    I look solid but I feel like fry when the super power cream where’s off ( futerama )

    A sham of my former self

    Eds is seriously taking its toll

    #EDSAwareness #ChronicIllnessEDS #HypermobileTypeEDS #EDSers #EhlersDanlosSyndrome

    6 people are talking about this
    Community Voices

    Tears in tendons from fast movements ?

    Any had that?
    I was moving my car around and started to slip on wet concrete but caught myself in a series of three partial falls
    Unfortunately my knees now feel like I tore them again as well as my elbow and wrist from catching myself

    Ahh frustrating doesn’t begin to express it

    I almost wish I just fell
    Stupid Eds!

    #EDSAwareness #ChronicIllnessEDS #EDSers

    2 people are talking about this