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! 😁
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!
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
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.
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
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.
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renkavik
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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! 😁
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☝ 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