Mind Blowing Facts About EDS! 🤯 (That You Probably Didn’t Know)
HTML-код
- Опубликовано: 6 сен 2024
- Mind blowing facts no one tells you about EDS and you just have to find out along the way 🙃
Thanks for watching! Xxx
My Instagram: @stelasulzdorf
...
Get to know me: My EDS Story
• What is Ehlers-Danlos ...
#EDSLife
#EDS
#DisabledLife
#Dyspraxia
#LackofSpacialAwareness
#TemperatureRegulation
#Allergies
#MCAS
#MastCellActivationSyndrome
#Autism
#OCD
#ADHD
#Neurodivergent
#MyMobilityAids
#Flareup
#Gerd
#EDS
#EhlersDanlosSyndrome
#EhlersDanlosSyndromes
#LifeUpdate
#HealthAndWellness
#HeartBlock
#Sickness
#Vomiting
#BabeWithAMobilityAid
#EhlersDanlosSyndrome
#EhlersDanlos
#HypermobileEDS
#MobilityAids
#HypermobileEhlersDanlosSyndrome
#ChronicIllness
#invisibleillness
#lupus
#AutoimmuneDisease
#disability
#dysautonomia
#LymeWarrior
#LupusWarrior
#Arthritis
#HyperMobility
#GoingOutWithDisability
#GoingOutWithChronicillness
#DisabilityVlog
#ChronicIllnessVlog
#SpendTheDayWithMe
#Epilepsy
#Seizures
#Fits
#AutoimmuneEpilepsy
#PoTS
#DisabledRUclipsr
#PoTSSyndrome
#MECFS
#ME
#BeightonCriteria
#BeightonScore
#MedicalHistory
#GeneticTesting
#EDSdiagnosis
#FlareupDay
#Physio
![Megan Thee Stallion - Neva Play (feat. RM) [Official Video]](http://i.ytimg.com/vi/TpYTyAaTRts/mqdefault.jpg)
Leave your questions about Neurodivergence for Kiril here ⬇️
Wow, this has answered so many of my why questions. I have MCAs, Pots, histamine intolerance, asthma, after a bout with Covid is what triggered it. However, now I'm wondering if I could possibly have EDS? Is there different types of EDs? Like I'm not bendy like you are but I don't have muscle mass. I've often wondered why that is and if my muscles are lax it's made me think, can my inside organs also be? I've wondered if this is why I got Pots?
Great video hun. EDS is very much underrepresented especially in women. Great work listing the less recognized characteristics of the condition. I wasn't even behind the camera on this one. One woman army right here💪💥💥💥💥💖💖💖💖💖
@@LittleonesmicrosanctuaryThank you for watching my videos and sticking with the channel! MCAS is soooooo difficult to diagnose. Most doctors diagnose on a symptom basis because of this, but honestly if you have EDS I’m almost certain you have MCAS too. Thank you for sharing this with me. I hope my channel can provide a bit of help for you. I can most definitely ask him this! Thank you for your question 💕
@@taniamorken4566it’s highly likely you have EDS. Have you tried doing the Beighton test at home? It’s really easy to find online. If you pass the Beighton test, I would suggest going to your gp and requesting a referral to a rheumatologist 💕
@@chrissulzdorf456Thank you always for your support!! 🥰
I forget how to legs sometimes too. My poor hips are magnetized to door handles as well.
Oh yes and cabinet knobs.
Check out the term "dyspraxia" to see if it fits.
oh my goodness .. this is what I was trying to explain to people about this odd idea they had that I should want to ride bicycles and drive cars, and how wrong they were to think death wouldn't occur. I know, no matter what I am doing, no matter how coordinated, there is a time limit on it. But, I don't always know what that time limit is. Usually, I do not. Even just holding a purse or chopping vegetables. Sometimes I feel the change coming and can stop and wait it out. So, it's like I can drive a car, in an emergency for as long as I'm wired OR, perhaps, for a short period of time before I suddenly have to pull over & make someon else do it. I'm not sure I'm saying this right. But, I recognize what I am trying to describe in what you described.
I've been diagnosed with hEDS/ and Autism within the past year (I'm 29 years old, been a rough couple of years lol). I've been watching a lot of your content and I love it so much! It's been really helpful just watching content and listening to other people's experiences with EDS and POTS. I can't wait to see you and your brother discuss neurodivergent things 🦋💗
Thank you so much! That really means a lot to me ❤
HSD have the same variety of comorbidities. The only difference is that they don't meet the specific criteria on the diagnostic checklist. There are EDS & HSD can both be hereditary or spontaneous. They're working on updates to the 2017 criteria called the road to 2026. Thank you for sharing all of these. It's always amazing how many things can be affected and the different ways they can manifest.
So glad you mentioned the autism link!! Not many people know about that
Highly comorbid nits the collegen.affects the subconscious mind am sure that's why we have fantastic memory
I just commented that when I found out and looked into it, I found out I’m autistic and it’s actually a relief to know why I am the way I am. It’s easier to be kind to myself knowing.
I RELATE TO ALL OF THESE! im 26 years old and autistic, adhd and dyspraxic myself and i have hEDS
Im so glad im not alone in all this and im so so soooo glad it doesn't make me weird like others say. Its not all in our head
Thank you are sharing this information with the world ❤❤❤
This resonated so much for me! I have hEDS, MCAS, and was diagnosed with adult ADHD. My son (also has hEDS) has OCD and my other son has autism and had an IEP (individual education plan) throughout school. My shoulder and my toes dislocate a lot and my jaws hurt even if I smile too much. It's crazy and validating to see someone else like me. 😂❤
I have cEDS, Autism, POTS, CCI+ Epilepsy. Along with Migraines and they’re all spawned from my EDS, I was likely having seizures as a baby because my family would talk to me and I would just stare into space. I Thank you for sharing your journey with me. The Struggle is real but we’re all in this hot mess together!
Growing up I thought everybody got lightheaded and dizzy when you would stand up. Gen X kids you just suck it up and move on. 2012 my systems really got bad and I got diagnosed with POTS/dysautonomia in 2016 CC. My youngest his hyper mobile joints won’t get diagnosed. My middle son started passing out when he was 19. I think we all have a variation of EDS.
You have such a calming presence and are so inspirational! I love Juliette has a gun not a perfume. It's exquisite. Looking forward to more content.
Oh my goodness! Thank you so much 🥹
@@stelasulzdorf 🥰😍
Yes plz neuodivergence talk plz!🙏
Man finding this video is eye opening seems you living my life 😮
Ribs are definitely the worst! I turned around while leading a horse and three of my ribs dislocated and I had costrocondritis!! Also have difficulty swallowing! Good luck and thank you for sharing!!!
I'm currantly being diagnose with EDS and a lot of what you said resonate with what I live with. I'm autistic, with an arterial hypotension (low blood pressure), probably ADHD too. And my god the number of time I was being said that I was clumsy or that I need to pay attention because I would break things or fall (the habit of tripping on my own foot) the stairs steps I miss... The fact that I sweat so much from the slightest heat... Go on hyperventilation from smells, shocking on my saliva... Everything makes sens at 27 years old at least 🥲
PS: Sorry for the possible mistakes I'm French and still not as fluent as I want to be in english 🙏😌
I'm hot and cold at the same time and have one leg under blanket one outside seems to work some of the time 😂
I have to think about every single move I make as well! ❤ Thanks for coming forward with your experience. I always knew there was a reason why I never got into dancing or aerobics. 😊
Yes... mind absolutely blown...!!! You seem like such a cool person hehe
Thank you so much for sharing your story! I am going to share mine this week on my channel. Keep pushing forward, you got this!! By the way, the brain fog (for me) can be so embarrassing! And not being able to put on my shoes standing up! Oh, and walking into walls 😅 ! So many things to choose from 😂.
What about lack of muscle tone in the intestine or acid reflux? I can bend over and fluid will come back up that I just swallowed and I feel like I empty my bowels fully and I don’t cuz I have to go 5x in 50mins and it’s almost emergent with TONS of gas pains that hurt like mad! I barf from caffeine too and chocolate which I love. There ain’t a day that goes by that I don’t deal with a stomach and /or GASTRO issue and if it’s not that, it’s brain issues.
Thanks for the video! i'm in the process of probably being diagnosed with lupus and am trying to figure out if my hypermobility is JUST lupus or also EDS too because the doctor named it as a possibility since I have PoTs (also AUDHD but I didn't mention that lol). I also have dyspraxia & essential tremours so that like really adds pizazz to my life lol.
The most annoying thing is my knees falling out of joint when walking or overeaching past my elbow when I go to grab something high up or far away.
I have bursitis in both shoulders and both hips I have osteoarthritis, torn rotator cuff, I can't use my cane cuz it hurts my shoulder, elbow, and wrist, so no one believes I need my wheelchair cuz I forget I need it and take off without it same with cane I'm so forgetful I can't stay on task and I feel I'm bleeding internally in my hip joint from bone spurs and impingement syndrome femoracetabular kind fibromyalgia I feel I torn my it band....doctors look at me sideways when I say I'm in level 10 pain because my blood pressure is low 98/56 um blood work don't show I'm bleeding internally 😢idk what to do they send me home with instructions to return if I experience them and I came in and was leaving with same symptoms I'm just totally confused
I’ve heard about the ab and pelvic floor thing but I had no idea that it was related to EDS lol.
Hi Stela, have diagnosis of autism, ADHD, SpLd, Fibromyalgia. Several times over the years, ive approached my GP/physiotherapist about EDS - but always get turned away. I dont think i have hypermobility, but, i certainly have joint/fatigue/temp issues/spacial issues - how on earth do i get the correct assessment?
This is such a difficult question to answer, as I feel like sometimes it depends on how lucky you are to find the right doctor/ be referred to the right place. It took me over 20 years to get my diagnosis. Don’t give up and keep trying! One day you will get your answers xx
Hypomobility centre ltd ndon I had to go private at 43
Oh my gosh so true ribs are the worst vs any other joint 😩🦓🌻💖
If I barely put any pressure on my upper ribs, I will dislocate them. So painful.
@@13fyrefli owch! I'm the same, you have my sympathies! Upper is most painful 😵💫 sometimes just breathing or exhaling does it lol it's weird how it flares at different times
I speak with my doctor this month about the possibility of having ehlers danlos. I am 99% sure I have heds.
Don't waste time. Go private. Dr Brennan at inherited connective tissue disorder clinic in London. £350. Best money ever spent!!! Good luck on your journey.
You made it so fun! This kettle of awful..🐱🌿💚
This is very relatable as an autistic person. Im thinking I need to see my dr lol
Just got to the where u brought asd up lmao
I had 2 hospital nurses laugh at me by the way I crawled onto and into the bed . “ Do you always get into bed that way ?
Yessssss. I’m 68 same way still 5…. Laughing at me 🤬
Do you ever get confused as to which leg is in front when you are laying on your side? And end up kicking the cat you were trying to avoid? I mean how can a body forget which leg is which!?
OMG I sneezed once and my little toe popped out of joint and back in. I mean honestly!
I sneeze I cough I sprain my back glute and down my leg causes calf to Charlie horse
You sound like me I was allergic to everything soy was the major one