Struggling to get an EDS diagnosis

Hello! I’m curious how you all who have an official diagnosis got diagnosed with eds (more specifically heds). I suspect I have it, as I have all of the symptoms, plus my sister also has it and we relate so closely on our health problems. The problem is, any time I bring it up to my doctor she brushes it off as “just being flexible” and “not worth getting a diagnosis”. It seems like if they can’t see it in a lab or with their own eyes then they don’t believe it’s real. I feel like this diagnosis would make everything just make so much sense, but doctors seem to severely undervalue the validation someone can receive from a diagnosis. Sorry this turned into a rant lol, this is the only place i feel like I can talk about these things without being seen as dramatic or a bother.

Your answer

Knees

1y ago

I had mine misdiagnosed as a severe case of growing pains and then I went from doctor to doctor until I got to a rheumatologist who diagnosed me. I was already aware at the time but we needed to do proper testing. I got diagnosed at 11 or 12 I think. I was fairly young to be diagnosed.

zozo131

1y ago

So mine was originally misdiagnosed and my mum had to persist for them to actually take notice and then it took me absolute years to get an official diagnosis because my dad refused to do a blood test 😂 but I still struggle to get the doctors to take me seriously now!! It’s got to the point where I’ve given up going lmao

Pet_Semetary

1y ago

I'm currently going through that process too, you're not alone:) but for me I managed to find a rheumatologist who I could go to without a referral from my doctor, and I haven't had the appointment yet but it might be a helpful next step for you? They might know more about it than your gp but I hope that helps! and I hope you figure it out soon:)

EDSdancer

1y ago

If I remember correctly, having a family member with EDS is part of the diagnostic criteria for hEDS. you can look up the paper and see if fit enough of the requirements

lamajama

1y ago

it can be, but not always. in my case, family history is involved with minor symptoms (mostly benign joint hypermobility) that other members of my family portray, but i am the first in my family to actually get hEDS and get a diagnosis.

mthebrave

1y ago

A physiotherapist might be able to help you. My sister related to my AS, and she wasn't diagnosed with it but she still had a refferal to rule it out. The doctor needs to hear all your symptoms and how they affect your life like if you're in any pain etc. Good luck 😊

Bibble

1y ago

It's so hit and miss as so many doctors don't know enough about hEDS or don't take it seriously. I got really lucky at a young age because it turned out my doctor did know enough about the condition and diagnosed me immediately. I'd look for any local info about doctors/rheumatologists in your city/area who are properly aware of hEDS. I don't know your situation but I know it's especially hard for younger hEDS patients to find a diagnosis as symptoms get more severe with age so in childhood and young adulthood it's often brushed off. So, if you have no luck now, know there is hope in future. I hope you're able to find a diagnosis soon!

pepperpatch

1y ago

Honestly the way i got my diagnosis was when i wasnt even looking for one. I would bring up other symptoms i had and was curious about my other problems but my doctor connected the dots and said it all seemed to connect to being HEDS and thats how i got that diagnosis. Honestly id recommend trying to either find a new doctor or at least a support network of others who have HEDS.

Lndsy

1y ago

I’m sorry you’re experiencing that. I definitely know how that feels and it’s frustrating. I found a geneticist through my local EDS Facebook group. I have also found a GP, rheumatologist, gastroenterologist, and cardiologist that way and they are all amazing and EDS aware. I highly suggest seeing if you can find a similar local group if you haven’t already. If that isn’t an option, my advice would be to not give up. Try new doctors until you find ones that listen bc they do exist although I know all to well the feeling that they don’t!

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