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Wanderinglumos

619d

I was diagnosed with heds last Friday, after suspecting I had it for quite some time but I’m feeling discouraged this week as every joint I’ve ever had problems with has become sore. I was frustrated enough with the hip and shoulders but I have a rib that I thought was just a weird injury a couple years ago that randomly flares and now I suspect it’s from heds. I am just now learning about it all so I don’t even know what to do to help it. I feel a bit overwhelmed with having to find new doctors with eds experience and just overall burnt out with dr appointments at the moment. I haven’t been able to work in two years bc of this and my pots and I feel like I’m now back to square one of trying to find something to manage it all. I just needed to vent a little bit bc I don’t have anyone who really understands. Thanks🙃

Top reply
    • Zebragirl

      436d

      Congrats (sorta) on the diagnosis. Glad you have a community to talk to. Good luck, you have access to more resources now with a diagnosis

    • Zebragirl

      436d

      Congrats (sorta) on the diagnosis. Glad you have a community to talk to. Good luck, you have access to more resources now with a diagnosis

    • mossbug

      600d

      I feel ya, went to the geneticist for something completely unrelated and got surprised by him being pretty sure I have hEDS and giving me SO much info about that. To make it easier on myself I started researching more, and honestly searching it on tiktok and seeing others find humor in their problems helped me a lot.

      • Wanderinglumos

        600d

        @mossbug I didn’t get tiktok until a friend told me there were ppl on there talking about chronic illnesses and I’m glad I did. It’s been surprisingly supportive

    • ChronicIllnessBabe

      611d

      I REALLY feel for you. My health TANKED during Covid and I finally started seeing docs… I found out I have POTS, hEDS, MCAS and a HOST of other comorbidities. Realizing I was medically gaslit as a child by friends, family, doctors, teachers and professionals I’m aghast. It’s taking a lot of healing for me to swallow the “pills” of my diagnosis and realizing how disabled I truly am. However! We are the canaries in the coal mine my fellow hEDS friend!! 1 in 5,000 people carry this genetic disorder (whether or not in presents as badly as ours does…) and more and more and more people will wake up to this! More people will search for help and thus maybe one day cellular medicine and genetic medicine will find a “cure” for us! 🔥💞 that’s what I try to tell myself everyday that I think of kms from pain 🤷🏻‍♀️ sending so much love to you. These bodies of ours are trying so hard to keep us alive, I’m happy to make connections with others who struggle the same.

      • Wanderinglumos

        600d

        @ChronicIllnessBabe sending love back! Thank you for the response. You are right. I’m thankful for our bodies that keep fighting for us. So glad to connect on here!

        • ChronicIllnessBabe

          600d

          @Wanderinglumos it’s important to grieve that our bodies totally SUCK lol but also that they keep us alive. Man! It’s hard! Lol sending so much love to you

    • Quari

      619d

      Woah dude! I have an appointment in January where I'll hopefully get an official diagnosis for heds! I feel ya on the aches and pains. My knee, lower back, and so many other parts of my body have been so finicky lately... or always. I'm proud of you for coming this far! You pushed through to advocate for yourself to get a diagnosis, even with the energy drain that is POTS and hEDS!

      • Wanderinglumos

        615d

        @Quari thank you so much! I hope you get the answers you’re looking for in January too!

        • Quari

          444d

          @Wanderinglumos I got the diagnosis lol. I am also overwhelmed with all of the chaos of trying to care for myself. Message me if you want any of the handouts I got from my doctor

☝ 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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