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algae

521d

Recently i’ve been more seriously considering eds/hEds as an explanation for my many symptoms, and was wondering if anyone that has experience with ehlers danlos syndrome could look at the list of symptoms i have and give any advice. I recently went to a rheumatologist and they said that i had hypermobility and possible slight scoliosis they also said that for it to be ehlers danlos syndrome that i “would need to be way more hyper mobile” but i’m not sure how valid that statement was growing up i was always the injured kid, i was on crutches or in a sling or some sort of brace multiple times a year despite never breaking breaking a bone, having dislocated or pulled most joints. i would stretch my fingers and joints and whatnot in weird ways as party tricks/conversation pieces i have digestive issues that makes eating/digesting all food really painful possible pots, as when i stand i am always lightheaded, sometimes with my vision going black and my ears ringing a lot. this could also be the afteraffects of an eating disorder though i have tmj that’s been bothering me for a few months now where my jaw clicks often when i move it i have fibromyalgia and chronic pain where pretty much all joints and muscles hurt 24/7, but sometimes specific joints hurt with no identified trauma my joints click pop and crack all. the. time. snap crackle pop was a nickname of mine i don’t think i bruise particularly easily i think my skin is pretty soft smooth velvety, but i’m not sure if it’s abnormally so. i looked at pictures of hyperelastic skin and mine can stretch similarly to those, but it’s hard to tell because of how much it hurts to stretch it. my skin is pretty thin, you can see veins pretty much all over my body wounds and just everything take forever to heal i think i dislocated/injured myself way more than i remember/went to doctor for because 1) we couldn’t afford to and 2) my fathers used to say when i was younger “no blood no tears” so… they didn’t have the best outlook on pain if any of you read through all that, thank you so much. i appreciate any advice/thoughts that anyone has.

Top reply
    • abbz

      521d

      hey! i have eds and i have all of those symptoms too! i’d be happy to message about it! 🤍

    • Loocifer

      520d

      I have hEDS and hit ever bullet point, feel free to slide into my dms as well if you want to talk more! :) I’m so sorry you’re experiencing so much discomfort and I hope you can get the alerts you need

    • Entropyluna

      520d

      I'm currently working towards getting a diagnosis for myself, and I've been reading an article published by an Ehlers-danlos specialist to see how likely it is. Based on what you described, you are a textbook case of hEDS

    • Touch_of_Grey

      521d

      I got diagnosed with EDS last year! Let me know if you have any questions! 🦓

    • abbz

      521d

      hey! i have eds and i have all of those symptoms too! i’d be happy to message about it! 🤍

      • algae

        521d

        @abbz i would greatly appreciate that!

☝ 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

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