My Symptoms of EDS (Ehlers Danlos Syndrome) from Childhood to Now.

hey guys, hope you're hanging in there, for Ehlers Danlos Syndrome Awareness Month I thought I would share my symptoms of EDS to help close the gap in diagnostic time and raise awareness. I share my symptoms from childhood until now, how they progressed, what signs of EDS were missed and what it was like at my worst.

Symptoms of CCI and AAI:
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[waheguruwaheguru]

So much suffering..tks for sharing ..M glad u feel better .. 🙏

[ElianawithGodinfocus]

This is almost exactly all my symptoms all my life I have been diagnosed with hypermobility around 10 years old, but I realise there is probably more to it, my levels of stress makes everything worse, I am really bad at resting as often as I need, for my body and brain to recharge to function. As an autistic+ADHD highly intelligent person my brain moves faster than my body can keep up with, and when I hit ND burnout my body and all my EDS symptoms literally makes me unable to leave bed really quickly, and my pain levels are utterly horrendous, and my body does exactly as you described. Rest, sleep and hydration for as long as it takes to get recharged to function all day without massive struggles, I am really aiming for learning to rest daily, to minimise chances of complete ND burnout and these body function flare ups.

[jodimerusi]

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.

[Dulcimerist]

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!

[TheTradeTea]

thank you for this video and your thoroughness

[JanainaBrognoliArte]

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...

[shannongreenwell]

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 couldn’t 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 don’t eat gluten but when I do eat it I get bloated and gassy. Plus, I’m 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.

[MOJORAPSCALLION]

Hey Mel I hope you’re 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 wasn’t 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

[jwilleseries]

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

[ItsStabilityTime]

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

[jackiesicilian]

Memory issues was probably from brain stems compression, poor girl. So tragic no drs caught this earlier.

[parkerjon]

Its so interesting how EDS transformed from a genetic condition to an acquired condition...

[SofiaSabi-lr]

Do you try ldn see dr kurld norbert from isael

[jackiesicilian]

I had the whooshing sound at bedtime and others you have but no dislocations. Its so so complex, who diagnoses eds?

[Blvd]

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?

[MOJORAPSCALLION]

Ps. Wonder if it was also ME/cfs and MCAS? X

[jackiesicilian]

Do you know if all these symptoms were from EDS or cci or combined from both?