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renkavik

665d

hello! i’m ren, i’ve been doing a lot of research regarding EDS (hEDS to be specific) because although i’ve always had certain symptoms and health problems as a kid i’ve never been diagnosed and i’m looking into setting up an appointment with my GP to see what he says. my whole life i have been/had to deal with: - hyperflexibility/mobility - mouth crowding/general teeth problems - extremely translucent skin - long extremities - feeling tired/worn out all the time, weakness at random times - my joints feeling like they’re popping out of place, double-jointed in almost every part of my body since i’ve gotten older, in the past several years, i keep having problems and pains that keep getting worse, such as: - chronic headaches - bad jaw clicking/popping - gastrointestinal problems - headaches - back and neck pain that get worse as the day goes on - chronic fatigue - more heart arrhythmia - hip joint on left feels like it pops out of place when i walk and/or will feel like it’s grinding in the socket (depends on the day) - knees feel unstable + if sitting in a certain position for too long (nothing crazy either, just like sitting and sleeping in a 2-hr car ride) knees are stiff as hell and hard to move that’s everything i can think of for right now, but when i was doing research every single symptom i matched with to a T. i’m not the type to go around and self-diagnose but i wanted to get some opinions before i go see my GP. anything helps! 😁

Top reply
    • renkavik

      655d

      @ArtyCharlie i’m on the east coast! i live in FL. would they be anywhere near me? i’m going to call my GP and see what he thinks and ask if he can refer me to anybody.

    • ArtyCharlie

      661d

      Hi there! I'm almost 40 and have found the older I get the more crap goes wrong I have eds/chiari, mast cell activation disorder along w the rest. There are specialist out there but it can be hard to find them. I believe there is one on the east coast

      • renkavik

        655d

        @ArtyCharlie i’m on the east coast! i live in FL. would they be anywhere near me? i’m going to call my GP and see what he thinks and ask if he can refer me to anybody.

    • MakMcK

      661d

      I have almost the exact same symptoms. I would definitely bring this up to your FD. But do come prepared. Understand this condition is quite rare and many physicians aren’t very familiar with it.

    • Blinky

      661d

      WAIT IS MOUTH CROWDING AN EDS THING I WILL LITERALLY PISS MYSELF LOL

    • Meegz

      664d

      I was recently diagnosed with hEDS as of April and your symptoms are on par with my own. I'd definitely see about getting a referral for a specialist. A whole slew of complications can come with EDS, and I'm of the opinion that the more we know the better off we are. I have an appointment to get tested for dysautonomia to rule it out, although based on what I've presented it's a very likely possibility

    • LilacFaye

      665d

      I am diagnosed with hEDS and your symptoms are almost identical to mine. I would absolutely check in with your gp, but more importantly book an appointment with a geneticist to rule any similar disorders out. Good luck!

☝ 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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