My Symptoms of EDS (Ehlers Danlos Syndrome) from Childhood to Now.
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- Опубліковано 25 вер 2024
- 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.
My EDS Diagnosis Story: • My EDS Diagnosis Story...
EDS Playlist: • Ehlers-Danlos Syndrome...
CCI and AAI playlist: • CCI & AAI (Craniocervi...
Symptom and Diagnosis Story Playlist: • Symptom & Diagnosis St...
Q&A Did EDS and MALS affect me during childhood (conversation with my mum): • Q&A: Did EDS & MALS af...
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Symptoms of CCI and AAI:
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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.
Mel, you are the bravest young woman!! I went and watched several of your videos about the feeding tube surgery and resulting infections. How you suffered at the expense of Drs who couldn't, or worse, wouldn't help you. My problems pale in comparison with what you have had to deal with. I will continue to follow your progress up to the present time. I'll be thinking about you!!
thank you for your encouragement :)
oh my goodness, I am so sorry this happened to you and you've experienced this! also I am so sorry you've spent so much of your life in so much pain!! I hope you can get the help you need moving forward :( :(
Wow! Im so very sorry! Youre very lucky to be alive after taking those shots!!! I would do massive detox (even tho sadly its the one vaccine you can never fully rid your body of) and get that poison out or you! So scary every thing that is happening to others now. Prayers 🙏
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.
Yes! I actually do get sores on the top on my head too, not as much anymore but when I was at my worst I used to a lot! I didn't even think of that as an EDS thing. Wow that is a lot going on, I'm sorry for all the suffering you've been through
Do you also have MCAS? Becuase I think it can cause allergic reactions to substances you're not actually allergic to, I have been getting allergic reaction to several substances I have never been allergic to before
@@jwilleseries7764 yes I do have MCAS and I have so many ''allergies" that don't seem to be true allergies because I wasn't born with them but developed them
@@iammellbell I do know that EDS Can often cause MCAS And I do have almost the same expecience as you in this regard as I was not born with any allergies but have developed so many "allerigies" that just appeared at various points during puberty. Recently I even get rashes and itchy skin from showering and my throat feel strange when I drink pure water so I hope I got MCAS Because that is way better than being allergic to water
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!
@@Dulcimerist thank you :) yes always reasons to have hope!
So much suffering..tks for sharing ..M glad u feel better .. 🙏
Thank you :)
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
Hey lovely! I am so sorry that you have been on TPN and it hospital :( that sounds awful and you must be going through a lot of suffering right now. I am doing a lot better than I have in the past which I am very grateful for. I still have a long way to go though, I hope to give more updates in long form videos to come. Sending you all the best, I hope you're hanging in there
@@iammellbell hey lovely thank you for the reply I have a separate J tube for feeds, fluids & meds and a draining G tube now so doing much better! No more vomiting up peg-j tubes or them flipping into my stomach. So happy that you’re doing much better! Sending love from the UK 🇬🇧 x x
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
hey, I'm so sorry you're having a high symptom day, that is terrible :( sending hugs your way. I never had these symptoms severely thought I do sometimes have some discomfort swallowing and have to swallow a few times for something to go down. I also get the feeling of something getting stuck in the throat and feel like I'm often adjusting the front of my throat and I definitely have the bobble head symptom - I'm pretty sure these are from CCI. I am so sorry that this is your most debilitating symptoms, the bone in the throat sounds horrible. The bobble head symptoms/my symptoms of CCI are also my most debilitating so I totally get you
Thank you for sharing 🫶🏻🙏it’s hard to talk symptoms so I appreciate it. Yes it’s so disabling, the bone moves and then a few second later my skull wobbles. Hyoid? Thanks Mel 🌻🙏CCI is a journey and I find other people who experience such conditions to be the strongest people I know.
@@ItsStabilityTime it's definitely hard to talk about symptoms and CCI is definitely a rough one, I agree I've met some of the strongest people I know. It's an awful condition. Yes I think probably is the hyoid
I had the bobble feeling with smaller foods or feeling like I’m chocking with bigger foods my mom never believed me 😂, but that’s super interesting. My cardiologist suspects I have EDS because of my heart problems and because of my leg injury. I hope you’re feeling better now, it’s been a while but I can definitely relate to some of what you felt.
Probaby an esophage spasm. GI doctos can diagnose.
I had the whooshing sound at bedtime and others you have but no dislocations. Its so so complex, who diagnoses eds?
interesting! A geneticist diagnosed me
A geneticist can diagnose which of the 13 different types of EDS someone has. Any doctor with the Hypermobile type EDS criteria can make an initial placeholder diagnosis of hEDS until it can be determined which type they have, or if it's a related connective tissue disorder. Having the hEDS diagnosis as a placeholder is important, since there are certain protocols that need to be followed during dental procedures, surgeries, and other things when someone has any form of EDS or is suspected to have it.
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 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
i'm sorry that you have a lot of these issues, I hope your evaluation process goes well and you find the root of the problem. EDS patients can all present very differently so no two patients are exactly the same :)
@@iammellbell Thank you, I hope so as well :D You are defineftly right about that. I am quite fortunate that I do not have as many issues to the same degree as you but I do suspect that is becuase males are generally less affected by EDS Than women although I know that should never be taken as an absolute but it is still quite help for me to know as It explains in why my issues tend to be less severe
I'm glad they're less severe, but still sucks that you have symptoms.I've heard males generally do tend to have less severe symptoms but not always, I find it interesting and would love to see more research in the future as to why that is 😶
@@iammellbell I am also quite glad they're less severe and you're right that my symptoms suck, I am in pain at least once a day from walking because bascially all connective tissues in my legs hurt from carrying the weight of my body even though I am really skinny because I do have a hard time eating and my ribs does hurt on their own without any external physical impact. I have aslo heard that males generally tend to have less severe symptoms but not always. It is good that we already knew it is not always the case because individual males can have among the most severe symptoms of EDS. Guys who have EDS May think that they don't because there are more women diagnosed with EDS who generally present with more severe symptoms and then assume that they don't have it but if they know women generally more severe symptoms they there would be less men who go under the radar
yes totally I agree with you that more awareness all round is a good thing as if EDS is seen as predominantly women then men can go under the radar and that's not good :( I am sorry you have pain, it is very hard to live with pain and troubles eating..
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?
yes, I had been diagnosed with ME/CFS as well
Its so interesting how EDS transformed from a genetic condition to an acquired condition...
totally, it's also very common now, it's kind of like the new fibromyalgia
Ps. Wonder if it was also ME/cfs and MCAS? X
Id say so, i did get diagnosed with both at different times
Thomas Mark Davis Angela Lopez Mary
Memory issues was probably from brain stems compression, poor girl. So tragic no drs caught this earlier.
yes, I think so
Do you know if all these symptoms were from EDS or cci or combined from both?
I think there is a combination of both
And the causation for alot of us is autism adhd
EDS causes the CCI, due to the weak collagen and weak ligaments of EDS.
Thompson Susan Lee Ruth Harris Kimberly
Does you neck collar help your pain
yes
I have heds now diagnosed autism ADHD fybromyalgia CFS symptoms decades alot is caused by mcas to
@@Truerealism747 Mast cells reside in the connective tissue, which is made largely of collagen. EDS is a defect in the body's collagen, which is why MCAS is so common in people who have EDS.
Jones Kimberly Brown Paul Wilson Sharon