See Alike in...

Alike App

Browser

SurvivalBeard

679d

hello I just got diagnosed with EDS just this year I am 34 and I can say I was so relieved bc since I was 12 I have always been told it's just growing pains or there is nothing wrong with you stomach all your test came back negative you are healthy there is nothing wrong with you ect.... When I talk to the geneticist and he looked at me and said Your pain is real you do have EDS (I started balling like a baby bc after 12-13 yeas of being told there is nothing wrong with you it's just in your head I finally have an answer on why my knees, shoulders, hips, pop out of place for no reason and my ankles give out for no reason and I hit the ground) finding out that 90% of my problem come from EDS it was the happiest and saddest day of my life to finally have answers. Now I'm trying to explain to my wife and kids that I hurt all the time 24/7 and I love my wife so much bc she has stayed with me and supports me 100%

Top reply
    • Lesh1313

      558d

      Yes! Always hurting but as a kid no one believed me :( trying to get a diagnosis at the moment but telling my friends / loved ones I’m always hurting and they just tell me I’m being a baby or everyone hurts… I’m like yea but does your hips pop out of place just by rolling over in bed/ laying on one side to long along with pain all over 24/7! I feel you! 🖤

    • Lesh1313

      558d

      Yes! Always hurting but as a kid no one believed me :( trying to get a diagnosis at the moment but telling my friends / loved ones I’m always hurting and they just tell me I’m being a baby or everyone hurts… I’m like yea but does your hips pop out of place just by rolling over in bed/ laying on one side to long along with pain all over 24/7! I feel you! 🖤

    • the39th

      601d

      I had the same experience.

    • SurvivalBeard

      679d

      Now there is more to my story and I will post later just trying to get my kids in the bed

    • Wanderinglumos

      679d

      I’m glad you finally have answers! It’s such a bittersweet moment to finally have an answer after so long. It’s hard getting a diagnosis but it is so helpful to have answers. (Im not diagnosed. I’m seeing a geneticist this year for testing for eds but I felt this way after my POTS diagnosis). I’m so glad you have a great support system as well! Wishing you the best.

    • SurvivalBeard

      679d

      Yes I have many more symptoms but my message was long enough lol but does anyone else have trouble trying to explain EDS to people that don't have it and getting them to understand?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion