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

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

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.

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.

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

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?

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

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...

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

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

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

Does you neck collar help your pain

Sounds like you might also have had vaccine damage. Vaccines can cause gastroparesis, neurological symptoms and also lowered immune systems sometimes. It’s rare but these things do happen. If you research it there are a lot of people who document their issues.