What is it like to live with EDS? Typical daily symptoms of Ehlers Danlos Syndrome.
ฝัง
- เผยแพร่เมื่อ 1 มิ.ย. 2024
- Hiya!
I’m Ellie and this channel follows me on my journey through life, navigating
chronic illness and disability in a world that wasn’t designed for us. Today I'm talking about the symptoms that occur daily and make up a typical day with Ehlers danlos syndrome (EDS).
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FAQ;
Age- 20
Height- 5’1”
Disabilities- Epilepsy and Ehlers Danlos Syndrome
Me the other day at my GP - walks in without any mobility aid to ask if she can prescribe a wheelchair. No limping. No sign of discomfort. She is usually super understanding, but her first reaction was "are you sure you're there already?"... and that changed the moment I told her that it feels like someone is stabbing me in the back in 2 places, that my kneecap has decided moving side to side is what it wants to do, and it feels like there is a peice of Lego stuck in the arch of my foot to "see an occupational therapist to know what you need and I'll write the Rx whenever you have that info." And literally I managed to snag a OT appointment exactly 1 week later (this thursday) because of a cancellation: they have no other appointments till 2023.
I’m very pleased for you! I hope the process goes well for you and that you get what you need!
Dad comment. Postural tachycardia syndrome (PoTS) was the thing you couldn't recall.
So cute dad! 🥰
So glad you mention bone pain! Before anyone in my family knew about EDS, we all talked about this weird "familial bone pain" that a lot of family members all got. I only really started getting joint pain in the last five years or so - long after the bone pain set in more than a decade ago.
Thank you for your hard work on this vid!
EDS is in my family as well. My daughter had bone pain from vitamin D deficiency, and her digestive issues made it difficult to bring that and other nutrient levels like iron up to normal.
My vitamin D levels are normal, but I still get bone pain from my EDS.
We recently undertook the genetic testing and we all have EDS, the bone pain is the worst by far
I am 98% sure I have EDS going to get a diagnosis very soon for sure but my bone pain I call it my bones having a tummy ache, because it kinda feels like your bones have a stomach ache if that even makes sense. But I feel like you might understand what I mean X"D
omg diagnosed after one year?! ur so lucky! my symptoms started at 10, got misdiagnosed 4 times in the past 10 years, and im still on the waitlist for the ehlers danlos specialist. i wish more medical professionals were aware of EDS. my dad is a nurse and i had to explain it to him lol
Yes, although I did have to pay privately I feel very fortunate to have received a diagnosis so soon!
So the tilt table test is testing your blood pressure and volume. You have POTS. Postural orthostatic tachycardia syndrome. When you stand the blood falls to your feet. There is not enough pressure to return the blood to your heart and brain. That is why you pass out. It's a sodium diffeciency. You kidney do not hold onto the salt that they are supposed to. Eat lots of salt, drink lots and lots of water and do hydration drinks like liquid i.v.
These things help but they pots causes brain fog from the lack of blood. I also have to nap. Laying down helps get my blood where it is supposed to be and like you said the fog can last minutes to hours.
Sending hugs to my fellow chronic pain survivor.
The drastic changes are the hardest part of EDS for me. Some days I'm so good I'm up on my roof cleaning rafters (very carefully of course lol) and other days I can't leave my bed. An old neighbor actually accused me of making up my EDS and tumor and everything because she said it's not possible for a person to be that completely polar opposite day to day or even within the same day or hour. I could be doing great but than my autonomic dysfunction kicks in and I'm throwing up violently for hours or something dislocates and I'm down all day. I was once dxed with bipolar because I assumed I had to be with such drastic swings but nope, all EDS lmao.
To me it’s a pain in the heiny! I just clean the table at my work and I either dislocated my shoulder or try to roll over in the bed and I have my hip to pop out of place. I feel like I’m a house slowly falling apart bit by bit! Guess it’s due to the faulty mortar they used to build me!
And the rubber nails!
My doctor said I might have heds. I don't always get really bad pain but for a long time I just figured the constant random pains were just normal and everyone had them? Like right now my middle finger joint hurts, thumb joint hurts, my neck hurts, and my shoulder blade hurts. It's weird realizing that maybe this isn't normal for someone in their 20s
I’ve heard from a lot of people that the things they thought were normal later turned out to be EDS or Hypermobility syndrome. Deffo worth looking into
@@SmallandStrong66 yeah, I'm not totally convinced yet but it would at least be good to know if there is a reason for the random pains and injuries I get. Also what I could expect for the future. Thanks for the videos, they are very helpful in trying to understand all this.
thank you so much! I just got diagnosed and this was all so helpful.
Hi, loved the video. Can’t wait for the next one :)
Your kittie is always welcomed ❤
i feel like i have really chronic brain fog with my symptoms
I can deffo relate to this
Suffering with EDS myself this video was so relatable.
I’m glad
Well done ellie
So glad that I found your channel! I struggle with EDS hypermobility type..and I am unable to work due to the reasons that you mentioned. If I may ask what do you do for work? I have been trying to find something part time that is flexible with my pain and I just wondered what other spoonies are doing.🙂
I’m glad you found me! I’m an actor so unfortunately I’m not very helpful in terms of suggesting jobs that work. But any job you can do from home would be my best suggestion x
It depends on how much if affects you. Im a dentist and single mom of five!! Diagnosed at age 55. Menopause made it MUCH harder to manage. I can’t do stuff like fillings and surgery for eight hours a day anymore but I could manage 4 to 6 hour days. But I’m transitioning to an more ergonomic field doing orthodontics, jaw pain and sleep management including tongue tie release! I also push myself to keep moving because not moving makes it much worse. I’ve also found the online therapist, Jeannie Dibon who is incredible for helping to manage pain and stay strong.
@@SimiSilverHi 👋🏼 Can you please share more about how menopause exacerbated your EDS sx? Thank you!
how do you keep going . im a mom and i just want to give up
Hello hello, I'm a little late but I have to ask a question. Which medical field should I go to get diognosed? I have been to a lot of primary docs but no one ever cared much to actually listen to my symptoms.
I was diagnosed by a rheumatologist, hope that helps x
@@SmallandStrong66 Thank you so much!
My rheumatologist said she can’t diagnose it. She told me whoever said she could diagnose me was wrong. It’s frustrating. I’d love to find a dr who will actually help me
What do you do for work?
I’m an actor and also a financial data analyst