The Pain is very real BUT IT IS IN YOUR HEAD darling. Exercise does wonders. Start slowly and bulid up. Education and changing your mind, STOP focusing on the pain as hard as that may be. Start thinking you are healthy. And stop with this crying depressing attitude. Get proactive, you have to cure you're self. There is nothing wrong with you. I know you have pain. now start thinking you do not have pain. IT WORKS if you just change your mind and your lifestyle.
Hi Megan, wishing lots of strength to you, and as little pain as possible, however since your joints etc. are dislocating very easily, I would just suggest, that you loose some weight, to relieve your skelett.
There are many illnesses, we can't so much understand, because they are not as obvious, I had cancer 3 times, I guess people did not understand until I had lost all my hair from chemotherapy. I went thru hell but got back up, I am wishing you the same.
Megn, Thank you for producing this video for education. I also live in St. Pete Near Treasure Island. I was in a car wreck and suffer terribly for 7yrs. People don't understand unless they go throug pain. The medical system is this state is deplorable! I do healing and currently have met a friend from Tampa that is doing healing for me that helps! I also go to the beach often to just float as it helps too. I'm going to remember you in my prayers. Ceil : )
Whats really ironic is my whole real bad set of leg injury/re-injury nightmares (as those with EDS know, some of us heal very poorly) actually really started as I literally stepped off the curb -- walking away from a hospital where I'd just been to visit a fried who'd been in there. Just simply stepping off a curb into the street to cross it, bam.
Instead of turning to go back (fearing disbelief), I refused to turn back, & continued hobbling (very vicariously on one working leg) on my way home.
I was offered an electric scooter prescription by my doctor the year I kept repeatedly throwing my legs muscles out so badly (alternating as I'd then overuse the best leg, back and forth). I refused, fearing I'd never get off the thing once I took it. I was a bit overweight and this compounded things greatly. I have to mind my weight in able to walk and not start the injury process over again. It can still happen but far less frequently.
Hi Meg, you sound like you're really struggling and people aren't listening. I just looked up on Wikipedia about it, and it relates to a collagen deficiency doesn't it? Could the doctors not simply do tests to examine your collagen to see if there are issues there?
Amazingly Hippocrates wrote of EDS in the 4th century B.C. and yet the medical society remains largely unaware of the condition.
I had one doctor tell me they use it a "trick question" in med school to trip up the interns.
It took them 51 years to find my problem and that was only after I discovered it on the web by myself and told them that was the symptoms I've had all my life.
It took them 18 years to diagnose me as well. But I was born with a lot of other medical problems [chronic kidney disease, heart problems, etc] so I hear ya. It does hurt to walk, or even just stand at times. And forget exercise... that's one of the main reasons I cannot lose weight. Thank you for your video and spreading the word of EDS. :)
I too have EDS. I always hurt since I was little, but I assumed everyone did-duh! To get people to realize your disability, it might be good to get a Medic Alert necklace or bracelet. I also have large knee braces with soft cotton underneath. An excellent doc in Tallahassee diagnosed me. Best wishes!
The Pain is very real BUT IT IS IN YOUR HEAD darling. Exercise does wonders. Start slowly and bulid up. Education and changing your mind, STOP focusing on the pain as hard as that may be. Start thinking you are healthy. And stop with this crying depressing attitude. Get proactive, you have to cure you're self. There is nothing wrong with you. I know you have pain. now start thinking you do not have pain. IT WORKS if you just change your mind and your lifestyle.
Hotelmotelkfc 3 months ago
Hi Megan, wishing lots of strength to you, and as little pain as possible, however since your joints etc. are dislocating very easily, I would just suggest, that you loose some weight, to relieve your skelett.
There are many illnesses, we can't so much understand, because they are not as obvious, I had cancer 3 times, I guess people did not understand until I had lost all my hair from chemotherapy. I went thru hell but got back up, I am wishing you the same.
Ninnisworld2901 1 year ago
Megn, Thank you for producing this video for education. I also live in St. Pete Near Treasure Island. I was in a car wreck and suffer terribly for 7yrs. People don't understand unless they go throug pain. The medical system is this state is deplorable! I do healing and currently have met a friend from Tampa that is doing healing for me that helps! I also go to the beach often to just float as it helps too. I'm going to remember you in my prayers. Ceil : )
qualityliving07 1 year ago
Whats really ironic is my whole real bad set of leg injury/re-injury nightmares (as those with EDS know, some of us heal very poorly) actually really started as I literally stepped off the curb -- walking away from a hospital where I'd just been to visit a fried who'd been in there. Just simply stepping off a curb into the street to cross it, bam.
Instead of turning to go back (fearing disbelief), I refused to turn back, & continued hobbling (very vicariously on one working leg) on my way home.
drooooopy 2 years ago
I have EDS.
I was offered an electric scooter prescription by my doctor the year I kept repeatedly throwing my legs muscles out so badly (alternating as I'd then overuse the best leg, back and forth). I refused, fearing I'd never get off the thing once I took it. I was a bit overweight and this compounded things greatly. I have to mind my weight in able to walk and not start the injury process over again. It can still happen but far less frequently.
drooooopy 2 years ago
meg i am sory for wot u have i have eds but not that bad sorry
flyinggoatman 2 years ago
i hate when people call me lasy when i cant stand up or walk.
they dont understand me either except one of my doctors does because she has so many patients with it
BuddyBoy091994 2 years ago
Just smoke weed
UKastro 2 years ago
Hey, I have a friend with early onset osteoarthritis, and ive seen how painful and disabling joint pain could be.
hope you find someone who understands
jinnai7 2 years ago
Hi Meg, you sound like you're really struggling and people aren't listening. I just looked up on Wikipedia about it, and it relates to a collagen deficiency doesn't it? Could the doctors not simply do tests to examine your collagen to see if there are issues there?
ianclark001 3 years ago
Bless Your Heart! Keep spreading the word, girl! You're doing great! Love you, Laura
edslaura 3 years ago
Amazingly Hippocrates wrote of EDS in the 4th century B.C. and yet the medical society remains largely unaware of the condition.
I had one doctor tell me they use it a "trick question" in med school to trip up the interns.
It took them 51 years to find my problem and that was only after I discovered it on the web by myself and told them that was the symptoms I've had all my life.
I wish you the best!
77095070 3 years ago
It took them 18 years to diagnose me as well. But I was born with a lot of other medical problems [chronic kidney disease, heart problems, etc] so I hear ya. It does hurt to walk, or even just stand at times. And forget exercise... that's one of the main reasons I cannot lose weight. Thank you for your video and spreading the word of EDS. :)
Kimblee18 3 years ago
I too have EDS. I always hurt since I was little, but I assumed everyone did-duh! To get people to realize your disability, it might be good to get a Medic Alert necklace or bracelet. I also have large knee braces with soft cotton underneath. An excellent doc in Tallahassee diagnosed me. Best wishes!
SueinTucson 3 years ago
Thanks i am glade you liked it i have a new one up
EDSGIRL021 3 years ago
Excellent 1st video, I am so glad you have started to post Megan. You will find that its strangly theraputic :)
I love the way you have spoken about the hells of living with this condition, well done
Linda xx
Elfins 3 years ago