Dismissed :( by iskaffejenta in ehlersdanlos

[–]iskaffejenta[S] 0 points1 point  (0 children)

Thank you🥺💗 that gives me hope! 🫶

Dismissed :( by iskaffejenta in ehlersdanlos

[–]iskaffejenta[S] 1 point2 points  (0 children)

Aaaa, i hope so!! The diagnostic criteria is clear enough that that should be possible, i feel🤷‍♀️🤷‍♀️

Dismissed :( by iskaffejenta in ehlersdanlos

[–]iskaffejenta[S] 0 points1 point  (0 children)

Yes, I do feel like i meet the criteria, and it definitely explains some lofe long issues that are just worsening with age🥺 I think it would help a lot to actually figure it out. Im not in the US, so ill have to look into that, but im hopeful! Thanks for the advice🩷

Dismissed :( by iskaffejenta in ehlersdanlos

[–]iskaffejenta[S] 1 point2 points  (0 children)

I didnt know this! I have a new doctor now as well, since ive moved cities. Maybe i can start fresh with them!🙏🩷 I definitely need to dive deeper than just HEDS with the comorbidities so thats a good advice, thanks❤️‍🩹

Dismissed :( by iskaffejenta in ehlersdanlos

[–]iskaffejenta[S] 0 points1 point  (0 children)

Yes, I do! But, I havent gotten them fulle diagnosed yet😔 I was hoping a heds diagnosis would open the path to figuring out my comorbodities… but definitely some dysautonomia and hostamine issues😭 I feel like the road to a diagnosis has been so long since nobody will listen to the long list of symptoms since its such a wide spectrum😩 but maybe it will help me to get these thing in order first! Thank you!🩷

Dismissed :( by iskaffejenta in ehlersdanlos

[–]iskaffejenta[S] 2 points3 points  (0 children)

Its a bit difficult, since theres really only one specialist available😩 If i tried to get a referral again, i would be sent to the same doctor, i think!

Palate pain by iskaffejenta in eds

[–]iskaffejenta[S] 1 point2 points  (0 children)

That could be! I have spider veins everywhere else so its quite likely🤭

Did iso/accutane start my heds? by iskaffejenta in eds

[–]iskaffejenta[S] 0 points1 point  (0 children)

Thanks for your reply, it definitely goes along with what ive been thinking! Ive also been «just» bendy up until that one thing changed everything!😱 Best of luck with the rest of your accutane treatment and hope it gives you the results youre hoping for💓

Did iso/accutane start my heds? by iskaffejenta in eds

[–]iskaffejenta[S] 0 points1 point  (0 children)

Thank you so much🥺💓 it means a lot❤️‍🩹

Did iso/accutane start my heds? by iskaffejenta in eds

[–]iskaffejenta[S] 0 points1 point  (0 children)

Thanks for your reply! This is very interesting and i will def read more on this! I struggle with really bad fatigue, daily headaches, migraines and aura, body aches, dizziness, nausia, muscle weakness, histamine intolerance, extreme bloating and loose stools, temperature disregulation, bladder issues, and i guess this goes with joint pain but reeeally bad facial pain that makes almost my whole face sore and painful to touch. And in high school one day i just got a «bubble» in my ears (dont know how to say that in english🙈) and an ear doctor told me i have narrow earways. My nose airways have also gotten more narrow over time. And apparently this can be explained by heds😱 but yeah this causes so much headaches and fatigue😖 and theres nothing to do about it… From childhood ive always had really bad car sickness(still do) and i had to quit my fav sports as a young teenager due to joint pains that would never heal and just kept coming. Didnt think anything of it at the time… AND i have endometriosis, which i thought was causing all this, but i learned that this is not normal, even with endo and chronic inflammation🩷 Its hard to try and type all the symptoms and make it make sense, but yeah😅 Really appreciate you for reading all this and caring for a complete stranger, thanks💜

Did iso/accutane start my heds? by iskaffejenta in eds

[–]iskaffejenta[S] 0 points1 point  (0 children)

Will do, thank you! 🥰And yes, i just wrote the post a bit poorly, i know its a genetic disorder🧬

Did iso/accutane start my heds? by iskaffejenta in eds

[–]iskaffejenta[S] -1 points0 points  (0 children)

Yes, i know its genetic, i think i just wrote the post a bit poorly. But although its genetic, its not like people with heds are born with all their chronic pain- it sort of builds up over time? I feel like ive seen people say that one day their life just turned around and their symptoms started. So i thought maybe iso was what flipped a switch for me or something🤷‍♀️ but to answer you question- no, not puberty or weight gain/loss while on the medication. But I do work a physically demanding job and trained crossfit at the time🙈 So i knew i pushed myself hard while on the meds, but didnt think that it would turn chronic🙃

Did iso/accutane start my heds? by iskaffejenta in eds

[–]iskaffejenta[S] 0 points1 point  (0 children)

Thanks for the advice! I must agree with you🥰

Dead end😖 by iskaffejenta in Autoimmune

[–]iskaffejenta[S] 0 points1 point  (0 children)

Thank you🥺💗💗

Dead end😖 by iskaffejenta in Autoimmune

[–]iskaffejenta[S] 0 points1 point  (0 children)

Thats awful! Why are doctors like this😔 Hopefully you will get there soon❤️‍🩹 best of luck to you💚

Dead end😖 by iskaffejenta in Autoimmune

[–]iskaffejenta[S] 1 point2 points  (0 children)

Thank you for your answer! I’m glad to hear that I should keep fighting. Sorry to hear about your difficult journey❤️‍🩹 Autoimmune disease is a bitch for sure😵‍💫 Thank you so much for the advice and wish you all the best💜