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
EDS Playlist:    â˘Â Ehlers-Danlos Syndrome (EDS) Â
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Q&A Did EDS and MALS affect me during childhood (conversation with my mum):    â˘Â Q&A: Did EDS & MALS affect me during ... Â
My Symptoms of MALS:    â˘Â MY MALS SYMPTOMS (Median Arcuate Liga... Â
Symptoms of CCI and AAI:
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All Comments (16)
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This is an excellent video! Thanks so much for sharing! I can relate to a lot of this from my EDS journey, and I'm so thankful that they diagnosed yours early in life. Although there won't be a "cure" per se, due to being unable to replace the defective collagen in the body, more and more discoveries are being made through which the various symptoms and comorbidities of EDS can be managed and mitigated better. There's always reason to have hope!
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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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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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So much suffering..tks for sharing ..M glad u feel better .. đ
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Hey Mel I hope youâre doing okay? I was in hospital again on TPN for the 3rd time was on it last one was 9 months home now internet was bad in my hospital so wasnât able to get online missed your content! Love & solidarity thank you for your video love Jo from The UK been ages since I last tuned in xx
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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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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 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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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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Its so interesting how EDS transformed from a genetic condition to an acquired condition...
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Ps. Wonder if it was also ME/cfs and MCAS? X
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Memory issues was probably from brain stems compression, poor girl. So tragic no drs caught this earlier.
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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