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hello.its.me

51d

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?

Top reply
    • titaniumzebra9

      3d

      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

    • titaniumzebra9

      3d

      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

    • titaniumzebra9

      3d

      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

    • titaniumzebra9

      3d

      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

      • hello.its.me

        3d

        @titaniumzebra9 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!

    • cuddly_echidna

      42d

      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.

    • TINAMARIE85

      51d

      ❤️❤️❤️❤️ 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! 😉❤️🤗💕

☝ 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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"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 out your worst joints and using braces for them can be a life saver. It's also important to find things that work well to help your pain, such as fingerless compression gloves for numb hands. Don't push yourself too hard, if you are having a bad pain day then do not do things that will agitate your body as it will only make things worse for you that day."

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