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hello.its.me

Updated 4mo ago

Seeking Advice on Dealing with Ehlers Danlos Syndrome Diagnosis

I just got my diagnosis of ehlers danlos syndrome yesterday after 5 years of being passed around between doctors. any tips for moving forward with this?

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AI-generated answer based on the text from previous posts and comments

"The Ehlers-Danlos society has a ton of good resources for Ehlers Danlos Syndrome. You can also find a specialist EDS physio and OT to work with, and get referrals to relevant professionals. Figuring ...See More

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TINAMARIE85

5mo

❤️❤️❤️❤️ Yes! Always, always, always stand up for yourself! Advocate for yourself, nobody else is coming to save you, nobody else is coming to help you! Ehlers-Danlos Syndrome can look like, to some doctors, one is simply hysterical and or a hypo❤️chondriac. However, on the flip side of that when you come in and say look, I have this diagnosis, to any specialist you may see after with a PCP, we will make things much more clear and🙏🙌🙌 understandable to them! 😉❤️🤗💕
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cuddly_echidna

5mo

So glad you finally got the diagnosis. I suggest searching on YouTube to get good info about it. There are some quality channels on it. Also, I've heard there's good Facebook groups for it too, though I haven't looked yet myself. There you could get good suggestions about all sorts of things and find more people to relate to. All the best to you.
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titaniumzebra9

4mo

I'm glad you got the diagnosis you needed! I'm so sorry that you had to be passed around from doctor to doctors, it sucks! I would research into it, watch YouTube videos, see what works for you in terms of medical aids, medicine, all those things, and last connect with people on social media. That is one of the biggest things I've learned on my journey. Surround yourself with people who have the same stuff, it makes it a little easier having people who can say maybe try this, this helped me, this didn't help me. It has made my journey a little easier to navigate
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hello.its.me

4mo

that's really helpful thanks! Unfortunately I'm now have the same issue with doctors informally telling me I have POTS and endometriosis but not doing much about it. I'm hoping people on social media have good advice on working around it because its exhausting!
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titaniumzebra9

4mo

I totally understand! It can be super overwhelming! Keep up the good work! It may be hard but you've got people who want to help! I can give you my socials via pm on here if you'd like
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titaniumzebra9

4mo

Some days it is hard to even get out of bed! Some days it is hard to get up and do something! Some days you have a really good day and the next not so much! Just keep your head up

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.

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