My Ehlers Danlos Syndrome diagnosis

I came out with a video years ago about how I got diagnosed with EDS. that video was very "someone figured it out" In recent years, I had to understand the trauma I went through and had to work on that. Now I'm ready to tell the full story of how hard this was to navigate to find out what was different with our family.
*i cant move my right arm due to a recent shoulder surgery

[@gbdchannel2252]

I'm getting ready to get eval'd for EDS by a neurologist. Thank you for sharing your story.

[@TheCloverAffiliate12]

Those quotes on the screen were powerful. Makes me irate that there are medical providers that skate by saying things like that. Very glad you got a more proper diagnosis!

[@katkaplan3]

Good to see you here again! I hated going to drs as a kid. No one believed me. About my pain etc. it’s all in your head.

[@thegracklepeck]

Oh man, as someone that self identifies as AuDHD (I do have an autism diagnosis but wasn't evaluated for adhd at the time), I relate so hard to taking antidepressants/antianxiety meds and it just making my sensory sensitivities, etc. so much worse.
Also relate to having pain since early childhood. Stomach pain due to undiagnosed GERD, pain in my legs and back, my hips popped (was born with hip dysplasia) at least as far back as 6 or 7. Turns out I absolutely have Ehlers Danlos. It's responsible for all my pain.

[@julierogers4473]

Wow, my legs hurt me so bad when I was a kid. And my knees. By the time I was 12 doctors want to operate on my knees cuz I didn't have any cartilage.. I learned how to tell the weather by the crushing of my legs when I was a kid.. I could tell you when it was going to snow. My lower legs just felt like the bones were crushing..

[@incurablyawesome2024]

Thank you so much for sharing your story! I was just diagnosed with hEDS this year, and decided to start a TH-cam channel to also spread awareness, and let others know they are not alone. Sending so many hugs and positive vibes your way. Us zebras gotta stick together! By the way... I'm currently in a shoulder splint now... oops.Shoulder surgery has been mentioned IF physio doesn't work. What was your shoulder surgery like? In other words, did it help your shoulder stay in place, how painful was it, and how long was the entire recovery process?!

[@NotYourAverageZebra]

@incurablyawesome2024 recovery with this type of surgery is ongoing i feel. this was my 2nd one I had. first one was easier with PT and the bounce back was probably 9 months instead of the typical 6 month for an average bodied person. This 2nd one I had was a rough recovery for reasons that wasn't due to EDS. Im over a year out and I'm finally in PT again and seeing improvement with everything.

[@incurablyawesome2024]

@@NotYourAverageZebra Surgery recovery for me personally has been rough with multiple complications. I now just blame everything on EDS! I still have scars from surgeries in 2012-2015. Wishing you the best of success with physio! You got this!

[@StefaniCooper]

That's kinda messed up that it took a man getting a diagnosis on his own for 2 women to be taken serious enough to get theirs. I'm really you got it figured out though either way!

[@NotYourAverageZebra]

@stefaniCooper yes. I know. Thats how serious family history was then to the genetics department. Glad some things have changed. Not everything needs family history

[@mgr2599]

Have you tried the carnivore diet?

[@NotYourAverageZebra]

@mgr2599 no. Ive followed a plant based lifestyle for awhile now for mutliple reasons. I dont see the carnivore diet being benefical in my situation and I feel better without meat.

[@mgr2599]

@@NotYourAverageZebra I have MCAS. As long as the beef is fresh and not aged I’m good with it. It has healed me up quite a bit. I am able to go out again for limited periods of time. The slightest bit of perfume, or laundry detergent used to throw me into the anaphylactic process. Check out Dr. Anthony Chafe. One lady interviewed on there is free of MCAS now after 3 years of carnivore. Dr. Chafe is a neurosurgeon in Australia. He talks about how plants have chemicals in them to keep us from absorbing all of their nutrients. I also have a gene that does not clear toxins well, so I think seed oils and plant toxins have been getting me. I’m suspicious that EDS might be resolved with high protein and high fat. I’m currently a work in progress. I guess we will see. Thanks for posting videos on EDS and MCAS. I am grateful.