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That bedside desk whaaaat I love that!!

This is real. :(

😢

We got lucky we learned I had it at a young age

Thanks for the advice. Luckily my Neurologist’s familiar with EDS and he was able to get me tested for it through bloodwork and I have Classical subtype.

In the UK we go to the rheumatologist for diagnosis. I was diagnosed with hEDS last year. My identical twin sister was diagnosed a few years before me. But my doctors didn't believe me. So I printed her diagnosis letters up and took them to the hypermobility clinic in London where I was diagnosed on the day using the 2017 criteria. They are now updating the HSD criteria. Have a look at the Ehlers danlos society for more details. Xxx

"promosm" 💥

Same exact experience! & for those of us above a certain age, let’s not forget about being told (for decades) it’s all in your head/you’re depressed. 🙄

I have docs that don’t really know or care about my hEDS aside from one that I saw before she moved her practice far away who’s greatest gift was getting me on LDN. That stuff helped my pain like nothing else and no one is a bigger pessimist to pain management meds than me. As for the rest, I either juggle with my diet (mildly sluggish gut, it is a never ending struggle), try to manage symptoms as needed (if I suddenly develop a stupidly big bruise without having injured myself it’s probably due to weak veins and needing some extra vitamin C to thicken them up a bit), buying another heating pad because I keep managing to burn them out too fast, and putting up with stuff as I have since childhood before I was diagnosed. I also have stim toys but they are more for the autism. I can’t really distract myself from pain with toys, if I can’t just work through it I just take an advil or (worst case scenario) tramadol and pray it helps (Tramadol makes the pain way, WAY worse later so it’s only used when I can’t take the pain at all, luckily my LDN treatment has drastically reduced how much pain I’m in day to day)

Pain distraction tools. I need!

What does the salt and potassium do?

Don’t get me stared

Super informative! Thanks for sharing…

Hey girl, thank you for sharing. How is this tested? I have thoracic outlet syndrome but I haven’t done anything about it because I’m so afraid of that surgery.

I have EDS and Epilepsy, I always tell people that I am the purple zebra 🦓 . I have Classic type. I only have so far in my room my braces, my wrist brace, back brace, and ankle braces. I keep my medicine in a medicine box.

Thank you so much!

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Woo! *laughing slowly turns into crying*

Why couldn't the new pain doctor consult with her primary care doctor (or whichever specialist oversees all aspects of her care) and they could then refer the new pain doctor to which specialists whom would definitely need to be consulted? Considering how rare this disorder is, and the many specialists needed for the patient, why couldn't they assist the patient in getting a pain doctor? Why would it be on the patient alone to explain and recount everything pertaining to their rare disorder? And the new doctor has no obligation to reach out to the specialists, ensuring they have all important and accurate information and make sure their plan is safe and appropriate?

Completely agree. One of the changes I was thankful for was the language update to include a sort of disclaimer like, "could perform motion prior to corrective surgery". I had had three knee surgeries to stop my knees from hyper extending (and other instability) before I fell down the EDS rabbit hole.

You are heard, friend.

So true. The barbarity of ignorance can only be stopped with awareness and education. To that end, thank you for making this video. So sorry you had to go through this. I know the struggle. It's real. Being denied your physical reality is the among greatest cruelties of all.

YES GIRL!!! "if you cannot connect the issues, it's probably connective tissue"!!! Western medicine spends too much time dividing our body up like county lines, and sending us to different specialists acting like nothing is related, purely because many of us "look so healthy" and are "too young to have so many problems".

"Tell their story." Oh, as the Savior of Foreskin, I hear you. Thank you for caring about us boys, too.

Letting you know that you are heard. I don't still understand everything. Thus why your consistent elaboration helps.

Great review. Thx. I am still planning on posting my update on Pudendal Hope in the next few days.

Research for yourself is the best advice ever. They teach very little about rare issues in Med school. Many Docs aren't even aware but even if they have learned about something, they often just assume it isn't something rare. They are often just looking for common issues and don't even consider something that only effects 1 in 100,000+ people. No, you can't really diagnose yourself but if you can, bring things up to your doctors and ask them about it, it gets them thinking. That can lead to getting referrals to doctors that may actually now about some of these rare and hard to diagnose issues. If you don't do some of the research yourself, many docs will just write you off.

I gotta agree, surgery is a last option. I got lucky and it helped me but it was a brutal surgery. I would also advise people to work with their Drs and do all they can to rule out other issues before having surgery. You want to optimize your chances of surgery helping. Had my surgery not helped, it would have set me back notably. Hang in there everyone, there is always hope. Medical research is always advancing. DON'T EVER GIVE UP.

Please keep talking. I may be a writer, but I don't absorb as much reading. Through each video, I'm remembering more and more. Thank you for sharing. You're a friend, and I love you.

<3

<3

Im was in the penalty box ^-^ with my mom dad and sister