My Symptoms of EDS (Ehlers Danlos Syndrome) from Childhood to Now.
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Published 2023-05-26
My EDS Diagnosis Story:    â˘Â My EDS Diagnosis StoryđŠâđŚ˝(Ehlers Danl... Â
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All Comments (13)
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Its so interesting how EDS transformed from a genetic condition to an acquired condition...
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So much suffering..tks for sharing ..M glad u feel better .. đ
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I saw so many of my symptoms in you. I had dislocations and partial dislocations since my early 20's. Chronic pain 24/7 and other minor symptoms. Then Covid happened -- vaccine #1 -- couldn't breathe, literally thought I was going to die, curled into fetal position. Started feeling a bit better about 5 months later then a month later Vaccine #2 -- exact same as before couldn't breathe, etc. 6 months after that I had my booster and it was worse than ever. That was in 2020 and I still suffer from many of the effects. I play the flute and nearly 3 full years later I'm finally feeling like my lung capacity has improved to pre vaccine levels. PS I'm nearly 68 years old (Dec) and I was just diagnosed with EDS a month ago. I'm having lots of gastric issues so I'll be looking at your other videos for info.
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Thanks for sharing, I see I have a lot of these symptoms but very mild compared to yours, guess not liking sports actually helped me.... Do you have tiktok? There are a lot of girls sharing their stories there too, is like a community...
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I have frequent urination, skin itchy and I get sores on the top of my head ( does anyone else have that problem? ). My feet have a purple look to them, but I have the Classical EDS type and I had problems with feeding as a baby because I couldnât drink regular formula, I had to drink soy formula. I also have PCOS which stems from my EDS. I have GERD, too. I think I have a gluten sensitivity because I do better when I donât eat gluten but when I do eat it I get bloated and gassy. Plus, Iâm still allergic to dairy because it does the same thing to me. I have gotten to the point where I have to wear pads that are for when you have over active bladders.
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Hey Mel! I am having a high symptom day and unable to watch the full video. Was one of your symptoms choking or difficulty swallowing or sensation of bone in throat with bobble head? I have HEDS and this is my most disabling symptom set and I am working to understand what could be causing the bone. I have CCI as well, xx much love my friend
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When you say "the thing that went into your arm", do you mean a shot like flu shot? Your episodes sound like post exertional malaise or crash episodes. Was it ME/CFS on top of EDS?
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I had the whooshing sound at bedtime and others you have but no dislocations. Its so so complex, who diagnoses eds?
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I would be one of those people who have a lot of issues including pain and I can relate to a lot of what's mentioned in this video but not all of them. I am in the early stage of getting evaluated for EDS because a friend of mine strongly supected that I have EDS
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Do you know if all these symptoms were from EDS or cci or combined from both?
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Does you neck collar help your pain
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Memory issues was probably from brain stems compression, poor girl. So tragic no drs caught this earlier.