Struggling with EDS Diagnosis and Family Support

so, i’m not officially diagnosed with EDS, but i have gone to doctors and many have said they are pretty sure i have hypermobile EDS and that i need to get genetic testing, issue is my guardian does not believe anything is wrong with me and that i’m faking it all, i’m stuck because she says it so often that it almost makes me think that i am faking it and don’t realize, i have a lot of symptoms including joint pain, hyper mobility sin just about every joint, very stretchy skin, bad wound healing, and very easy bruising. doctors have said that i don’t have arthritis or fibromyalgia. there is one person in my family that has been officially diagnosed but it is suspected that a few more have it. so, does anyone have any advice on basically anything? i feel very defeated and i’m just not sure what to do

Your answer

UselessBagOfMeat

2y ago

I had a horrible dr tell me that I’m too short for hEDS. Excuse me, douche. You’re thinking of Marfan syndrome, not EDS. He also told me that my shoulder was fine despite the absurd pain any time I moved it. And he explained why my shoulder obviously wasn’t fully dislocated. Uh huh. I said possible slight subluxation.

BlueTheOctopus

2y ago

That's rough. I definitely agree with a lot of what's been said already and if your doctors are suspecting it you probably have it. With that being said, people who are faking usually know they're faking. If you have to ask yourself if you are faking your symptoms, you mostly like aren't. I hope that everything gets better, for you with your guardian. 💕

littlebug

2y ago

of course! you can check out the diagnostic criteria for hEDS on the eds foundation website

xenith

2y ago

ah that makes sense, well hopefully my doctors can figure something out and hopefully my guardian will start to beleive me, thank you for the information!

littlebug

2y ago

it may just be that your doctors are misinformed. i had many doctors tell me i couldn't have eds since they only knew information on one type.

xenith

2y ago

oh that’s so odd, i wonder why it’s different

littlebug

2y ago

if you have hypermobility type, the genetic test will just rule out the other types. when i went to the genetic specialist, they didn't do a genetic test, they did the clinical evaluation

xenith

2y ago

the rheumatologist and my regular doctor both told me i need the genetic testing so we can confirm i have eds and then they can try to figure out what type, i’m not completely sure i just know i’ve been told to go to a genetic specialist

littlebug

2y ago

just so you know, hEDS is just a clinical diagnosis so far. they don't have the genetic marker found yet to test for it. genetic testing will just rule out the other 12 types. what doctor told you that you need testing?

Bijoux_bean22

2y ago

Just remember that there is NO WAY any other human on the planet knows your body better than you. I had a similar experience, my living situation explicitly forbid mobility aids, I am now in college and use whatever aids I need to whenever I need to. Stay safe and listen to your body the best you are able. Dm me if you want to talk more.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

Alike is a transformative platform that goes beyond just bringing together patients; it meticulously connects individuals based on multiple critical factors, such as age, gender, comorbidities, medications, diet, and more, fostering a community of knowledge, support and empathy.

About Alike Wisdom Blog FAQ Editorial Team All Conditions All Posts All Communities

Your Privacy Stories Community Guidelines Terms of Use Privacy Policy Helplines Contact Us Group Chats Guidelines