Examples of hypermobility with Ehlers Danlos Syndrome

[swrcool]

Tendinitis is a big issue too because when your joints aren't tight together they can get stretches or torn and that's what tendinitis is lol I have it in ankles wrists and shoulders.

On the bright side it's fun to be flexible!

[saturnianmusic]

@swrcool yea, I do find it fun to have EDS type 3. But I am sad for those with more severe complications. When I was young, I thought all those flexible things I could do were really normal until my friends found it amazing when I did something like bending my fingers, scratching my own back easily, touching my palms onto floor without bending the knees...sadly, I recently have shoulder & thumb subluxation although they don't hurt anyway.

[peaceduv02]

Thank you for posting this...I was diagnosed with Hypermobile EDS yesterday. It runs rampid in my family, along with Osteogenesis Imperfecta and Hypophosphotasia. It helps to know someone else understands it better than I do and can explain it better. I feel like I've learned some from this video....All the joint things you demonstrated I can do very easily as well, and were tests they had in the doctors office.

[danthehempsmog]

@peaceduv02 rockerchik76 DIED, RIP!

[peaceduv02]

@danthehempsmog really? Seriously? When?

[danthehempsmog]

@peaceduv02 Sadly a couple of months ago. I'm friends with her husband on facebook, and he has been keeping me posted ever since I asked him why tracie wasn't posting updates any longer.He told me at that point that she was struggling with his physical demise and descention into immobility. She gave up and came to terms with her declination. RIP Tracie.

[danthehempsmog]

her physical demise*

[peaceduv02]

@danthehempsmog That's so sad...I hate to hear stuff like that...:(

[danthehempsmog]

@peaceduv02 Tracie fought hard, but it wasn't enough in the end. It didn't help that she had alot of stress due to her husband. I understand both her side and his side. See they fought over sex as she was often in no shape to partake any longer in most sexualacts. She would refrain from sexual activity and, as a result, he was left to his own devices.

[danthehempsmog]

@peaceduv02 She would, eventually, relent and give in. However this was painful as she would often dislocate during intercourse. So it was quite painful for her to have sex and she often cried before and during. It caused them to drift apart. Eventually he forced her to move into their spare bedroom in the basement so he could get on with his life. He started dating even before things got too bad. He is now living with the woman he started dating several months before Tracie's death.

[danthehempsmog]

@peaceduv02 Tracie's husband goes by the username: justplayman. I informed him I plan to expose him for the pathetic excuse for a man, and husband he truly is!

[peaceduv02]

@danthehempsmog That's a real shame...I feel for her. Mine isn't that bad, but I'm hoping the PT will help strengthen it before it gets too out of hand...So is Ehlers Danlos fatal? I don't have the vascular type...that I know of, but the Hypermobility Type IV. It makes me sad that this illness killed her, and kinda makes me lose hope....

[danthehempsmog]

@peaceduv02 Not to worry, you won't die. She just lost the will to live, once she could no longer walk and wash and feed herself...well that is when things got out of hand. Tracie was a very proud person and liked her privacy and independance--as do we all. So, when she started needing help with simple day-to-day tasks she lost it. i mean, her husband demeaned her as he had to help her to the toilet, etc. She got to the point she couldn't even wipe without dislocating her arms.

[xvanessapaigeroberts]

hey am 16 thank you for poasting this I have mobility syndrome and I am 16 my thmb goes all the way to my for arm my bend all the way back and my left leg goes all the way back andd it causes me alot of pain I now have to have mayjor oper ations on both my legs coz I have wonky legs because of my hips and I have different lenth legs and I also have knock knee which needs to be opersted on and its gunna take up to 2-3 years to get the operations compleet

[tomhankslol]

i got the same mobility she has in my fingers. everyday i feel stiff in my leds, arms and legs, so i always tend to extend my arms and legs, holding the muscles to stretch. i have to bend my hands back and forward too from time to time, making knocking sounds. i haven't looked into it if it's serious medical condition or anything, or it might be because i sit on my ass most of the day.

[MusicMotives]

I have this, my knees bend back quite a bit and it's rewind my whole posture :/ so now I get pain in my spin lower back area and hips :/ I have tried standing normal but as I have always stood like that, any other way feels weird :L haha I'm 16

[PariAnderson]

This is only the tip of the iceberg...

I'd like to know when the dr.s will start recognizing it. I'm sick of being treated like a hypochondriac

[sacredcircle602]

Also with Ehlers like I also have sometimes with something as simple as sitting down or even moving your leg wrong with most ppl nothing happens with us our kneecaps pop out or you lose strength so to speak pealing an orange and unlike arthritis which we get later not fun but like in the winter I can't peel an orange my kids thinks its funny the best way to put it with normal ppl joints hold bones and body together with us it's our muscles though working out can injure us Good luck hun God bless

[Natureboywhooo]

Best thing to do when your hypermobile is to never take up yoga or stretch loads cause your already stretched out as it is, and do strengh exercises or light weightlifting to keep your joints in place cause in time it will shorten your tendons. It well sucks i know cause i suffer from it too!

[MsLindsay11]

i have this too.. only 13. they thought i had marfans. im so glad i dont!

[eedyak]

living with eds is terrible... i was diagnosed at the national institute of health... im going to be 16 in my and im in foster care bc of my eds.. they thought it was munchisms syndrome.... WHT A LIFE!!! It's nice to know that their are other people like me

[Wolverineeeeeeee]

I just found out I had EDS. I've been ill for 4 years now and the doctors could never figure out what my problem was. I even missed my senior year of High School because of pain. Then I watched Untold Stories of the ER and they had some one with Marfan's Syndrome. It kind of sounded like me so I did more research and found EDS. I had almost every single symptom so I went to the doctor and he did biopsies and took blood. The test results came back and I have the hypermobility type.

[MsDezzyzRayz]

God Bless You and your strength is to be admired. I have this and it has now gone to my spine and my legs also burn badly.The severe muscle spasms just won't go away. Doctors here are not very bright and are of no help and I think they are only hurting me more.I looked into something about injections that harden the ligaments and I think it might be worth a try.The pain is immeasurable so again hang in there Maryland Hospital does laproscopic hearts valves. I'm 48 it's hitting my valve too.

[bobbobly1]

THx uve helped me alot in the fact "the evil" doctor dosent tell me everythin cos he ses im too younng too kno about wat ive got

btw im 14

[mah781]

Also I like your demonstration with your fists when it comes to joint laxivity. My shoulders are loose just like that, they crack and crunch audibly, hips do the same thing.. for that matter almost all of my joints crack and crunch like that though they don't necessarily hurt.

[mah781]

Do you find yourself susceptible to tendonitis and minor sprains and strains as well? Though I don't seem to have full blown hypermobile joints( at least from the official tests I have tried on myself) I can bend my thumbs backwards and touch my forearms with my thumbs too. I do seem to be highly injury prone and even back as a teenager lifting weights I began to have problems.. now in my late 20s it seems almost any aggressive heavy lifting or exerting myself results in pain or a minor strain.

[SenoritaDiabla]

How important is it to get diagnosed, do you think? I'm pretty sure I'm EDS, but I have zero health insurance. My left pinky can bend back to the wrist o__o. Just wondering if I should make a special exception for this :]. Hope you're doing better now! [/off to check other vids]

[atvchick09]

my knee had been dislocating for 3 almost 4 years know its dilocated and went back in by itself probably around 32 times and i have had to put it back in about 8 and now im having problems with my shoulder and wrist...my PT said i def. have hypermobility...and also i have a chronic pain disease and a lot of people who have this chronic pain disease i have also have this...could have this?...i can do everything she showed in the video but bend down and touch the floor with my plams flat

[vegandanielle]

Right now there's an opportunity to help fund research to develop better treatments for EDS through Chase Community Giving.

Log into or join Facebook, look up Chase Community Giving, find the EDS Today charity and do the following:

(1) Click on Green "Get Started to vote"

(2) "Allow" Access

(3) Click on "Like" for Chase

(4) Finally click on "Vote Now" (Green)

Voting ends on the 13th of July, 2010! PLEASE VOTE to help! :)

--hope you don't mind me posting this on your comments to help EDS!! xoxo

[popomatic1970]

I sympathize.. totally. I believe I have a mild form of EDS, but it's been enough of a nuissance in my life that I frequently supinate my ankles (they roll, and I fall) - and this most recent experience resulted in a fall down some stairs and a factured fibula. This is aggrivating enough, but I can't imagine what it must be like to have it effect your spine, and heart as well.  Well wishes to you

[Chriscolferfans]

hey babe,

i hope you're okay!

i have hypermobility..was diagnosed with it in december 2009 but i think i have had it most of my life.

i get so much pain with it. but what's the worst is that my friends don't seem to understand how much it can affect not just me but people who suffer from it.

it upsets me so much!

you're realy improving.

Gentl hugs sweetie

love stacy <3

[miriamsusongrn]

Hi, my daughter will be 18 soon and I believe this is her diagnosis. She has had joint pain since 9 years old. She is hypermobile as well. I will send her your video. How do you manage the pain? She takes a lot of Motrin. I hope her stomach holds out. Miriam

[Dedanann77]

Loved your video, thanks for that. But do you have splints & other aids? Because I have nothing, I'm lucky if I get a yearly check-up. I get no physio, no occupational therapy, nothing, if I ask about it, I get told I'm not entitled to it. I have HMS in every joint throughout my body..., from jaw to toes. Just recently been diagnosed with an enlarged heart too.

[JakeandSamantha]

I have it too. Just found out my daughter has it also . Bummer.

[Rianna34111]

My Brother Can Do All Of These And Keeps Complaining Of Pain In His Joints Hes 6 Yrs OldHe Also Can Put His Legs Over His Head And Put 1 Over And Hop Abt Wat Shud We Doo?!?!?

[IcarusFlying]

i don't declare it's a cure but wouldn't good nutrition and careful weight lifting with limited mobility, help strengthen the muscles and help prevent injury. the body precisely adapts to the conditions that are placed on it. could poor nutrition or over exercise decrease muscle mass leading to an imbalance of muscle to flexibility? you are looking pretty skinny. try it it could work

[Sand4y]

@IcarusFlying it makes it worst by the way xP

[Beaner447]

i can do all of that and put my leg behing my neck stand up and hop on 1 foot.

[xpsykoxpixiex]

Hey, thanks for posting your videos -- it's so great to see other people who have EDS, rather than just emailing and FB =] My name's Kitty, I'm 20 and I have EDS (they can't decide if it's Classical or Hypermobility, because I have a lot of cross-over symptoms). I can't believe all these assholes posting horrid comments =/ I haven't had any yet on my vid, but then I've only posted one thus far =D

*Hugs* Hope this finds you in minimal owie =]

<33 Kitty

[jaseydaws]

There are some sick bastards on youtube posting stupid comments like the one below and sit on my face ...... My daughter had a score of 8/9 for hypermobility but cant decide whether its EDS III or Marfans? England is shite for diagnosis? All you sad bastards who dont know - fuck off because you dont have to live with the effects of having a disability!

[lizziedever]

hey im 14 yrs old w/ eds #3 i know exactly how you feel every single joint on my body subluxes since im a competetive swimmer my shoulders dislocates many times a day. due to the damage im getting surgery and hope it helps. through this all i ve leard so much about myself even though some days are rough it always helps to be optomistic. you seem like a great person and role model to everyone who has eds. i also want to help, im considering studying to be an eds specialist. stay strong thankyou!

[michellemabelle9]

@lizziedever

Hi I'm Michelle, I'm 16 and I also have EDS hypermobility type 3. My sister, my father and I all have EDS III. I really hope you haven't had the surgery yet because every doctor my family (sister, father and I) have ever spoken to have said that surgery is not the way to go. The surgery will make your joints stronger for a short wile but they will eventually return to their lax state because that's the way your body is meant to be. The muscles will not remain strong.

[fturtle77]

Hi I am 32 yrs old f, with eds. I found out when I was 19. My parents have been accused of beating me because if my bruises and scars from the eds. Till this day I don't were shorts even when it is scorching hot because of the scares on my legs. I wished more people new about .

[arik1912]

Hi there, My name is Arik I live in Southern CA and my Mom and I both have EDS. We have hypermobile and classical type. She is 48 and I am almost 28. She and I both live with it but she can deal with it better then I can. I try to be normal and do normal things but I miss having friends who understand and I miss taking long walks and sitting through a movie and other things. I only have 1 friend anymore that will accept me. I was hoping we can email back and forth about our eds. Arik.

[aunexsiss]

I think you are doing a great thing to make these videos helps a lot m my mum and one my twin sisters has EDS my mom is the werst out of the 3 of us then me then my older twin sis my mom did not find out til she was 32 and by then it was to late for her as over her life she did every think wrong and her body just could not take any more so we all fight the fight in driffent ways but otheres are werse then us :)

[bradbtheman]

i never even knew something was wrong till i was almost 19 too.. but i wish you the best of luck:) stay strong girl!!!

[bradbtheman]

im 20 years old be 21 day after valintines...i have hyper mobility joint disorder... my specealist says that im a 9 outa 9.. the worst case he's ever seen an hes been in a joint facility with cases like us for 12 years.. i have lots of pain everywhere an im constanly poping an cracking.. my heart is strong.. but i feel ur pain... i freaked when they told me wat i need a cardiogram for... tear to the eye when you said the news..

[CrazyRapGentleman2]

would you like to sit on my face?

[AngelofMusic8587]

to rockerchik: Don't forget, your man needs servicing, just because you are a freak doesn't mean he doesn't need to cum. D o your duty and make sure hubby cums alot. Don't be a lazy, useless freak. You owe it to him to pleasure him to make up for the fact you are a useless human.

[aglaee89]

hahaha this is nothing !!!! is level 1 ...

i have level 3 but i know that u living !

[denniss555]

I have it... Im glad this video helps people understand

[Decadence666]

There is no way to "cure" it like you said but working on core strength and supporting muscles really takes the strain off the joints. I have hypermobility EDS, I can bend my fingers all the way to the back of my hand, yumm

[ezequiel7]

I hope you get better, thanks for the explanation

god bless you

[RaybRay89]

i wish the best for you!

i love your hair, by the way!! :) i'm trying to grow mine out to be that long, and my natural hair color is just like yours, too.

[mollydoodle8]

I too have Elhers Danlos. I feel your pain 100%. I want to extend my thanks to you for doing these sets of videos. It's very important that people are informed about this rare, life-altering syndrome. I really do wish you the best. This disorder is hard to live with, but stay strong in your efforts! Myself, as well as the rest of the EDS community are with you all the way. Take care.

[Movie444channel]

Hello, My name is Richard, You are so nice, I really hope u get better, Goodbye.

[rprimeau95]

hmm wondering why are my comments not showing up

[oompaloompaman5]

your a very strong and admirable person. i dont know how i missed this vid 5/5.

[PastryPanic0506]

i have a spinal cord injury and i remeber when i found i had to use a wheelchair, if i can do it you can tp. keep it up and hold on no matter how tired your arms get!!!!! im uploading a vieo of my journey i hope you can watch it and gain strength ur im my prayers!

[MrsUpTownGirl]

You have alot of courage and patience your an angel

[milisemou]

Wow , shamefully I have to say that I was not aware of this disease .. thank you for posting this video , I wish you all the luck in the world , I must research this b

ecause I don't really understand how this disease operates on within the body .. good luck my friend .

Tina

[phrydoom]

You can move parts of your body alot better than me.

[datzfast]

when i was her age i could move like that

now at fifty three i try not to move at all.

i have black circles under eye from poor sleep because Evey movement while asleep is so painful it wakes me up.

i cannot do any thing for fun, still when i pretend i dont hurt i feel lucky.

[narcoti]

Oh crap you have the Vascular, :O Best of luck to you

[NickelbackIsSexy]

god bless you hope you get better saying alot of prayers for you

[narcoti]

this is a permanent ailment.

[BuddyBoy091994]

its my hips that i have the most trouble with

[SamAndJorjOnRS]

i have this but not as bad as you i dont think, but i can do a few more things then what you showed like turn my thumb all the way around and my arm goes very far over my head =]

good luck with it all =]

[jkweirich]

Tracie, I'm so sorry to hear that your echo didn't come back normal. I'm sure they're going to want to do more testing... and I just went through all of that myself, so my thoughts and prayers are with you. I've had a tilt table test, hemodynamic, blood volume, autonomic nervous functioning test... I wish you the best of luck! Stay focused on being healthy and advocating for the best care and treatment you need and deserve!

Kassady

[Pinchysandcrab]

Keep amazing us Tracie!

[HoodieBoi08]

mm.. i have this problem and causes me alot of pain at times :( me being double jointed does not help.. horribleee :(

wish you the best of luck !!

xx

[mav3r1ck69]

At the end of your vid you say thankyou...I would like to say THANKYOU to you for showing us!!!! You keep being strong and an inspiration to others.

[kanitoelbambino]

?????????????????????????

[DakotaPunk]

i admire your courage trac, you are an inspiration <3

please let me know when you put up new vidz

[TasceDakari]

Trace I am so happy you posted another video, because I am just putting together my daily prayer as I had a few other things come up with other people, including a friend's relative fighting her second bout with Lymes Disease, and is now completely bed-ridden. But I am glad you just reminded me to include you. I had nearly forgotten! Post vids more often! You will be in my prayers daily, now, and I wish you the best possible for you and your family. God bless you.. stay strong.

-Vincent

[JOSYMOL]

Please be careful when doing that. It hurts me by just looking at you doing that thing with your knee. I know what knee pain really means since my knees are shot.

Im glad your are making videos like this. It helps many people out there to realize they are not alone in this world with their conditions. And it helps us see that no matter what, a good positive attitude is a plus.

What do you do during the day? Do you go to school or how you spend your day? I wonder. I get bored a lot...lol.

[Imbacktogetyouwitch]

oh tracie..best of luck with this. will always be here for you. sending healing thoughts to you and yours! lots of love my friend!

[fast00pl]

Im away but Im with you ! <3

[musicman19651989]

Tracie you're an amazing woman, you're so sweet, Ive only just met you on here a few weeks ago through my Wife, I wish it had been longer. It's good to see you are keeping your chin up. Stay strong!! David x

[Zorlac0666]

It's enough to bring a tear to my eye, and no, not a tear of sorry, a tear of joy to see that you're staying strong, staying beautiful, and staying open about what's happening in your life. Where most people would have crawled into a hole and given up you're fighting, and you're winning. In my eyes the toughest part about what you're doing is showing it to the world. Everyone once in a while you meet an amazing person, and you're one of those people. Stay strong dear, it will pay off one day.

[heavensangelz1]

she is amazing person that dosent give up shes caring and very sweet wouldnt hurt a fly shes here to be everyones friend shes easy to talk to

i love you sis ill be here forever for you!!

[reneerocker1]

You are such an amazing person! So strong! Alot stronger than many of us would be. I admire that about you. I am so glad that we're friends ;)

[demonofdarkness19]

O..O OMG I can do that thing with my fingers and knees too... looks like youre getting better and better, good to see it =] take care Tracie and keep your chin up <3

[jtcomicm1]

Sis every time you make a new video i can see you getting stronger and stronger. I am also glad you are informing ppl about the condition. I had ask some friends of mine about it and they did not even thing something like that was real. Sis I will always be there 100% of da way. I know that you are there for every1 of your friends. Stay strong.

Bro 4eva

Larry

[doverette]

the rest of my last comment: I talked to a genetics counselor when I was pregnant. She mainly asked me if I was hypermobile & if I had elastic skin...both of which my father didn't have until his 40's......yet he had EDS and it threatened his life when he was 19. So my point is that some symptoms in EDS may not manifest until much later and others will manifest earlier or sometimes not even at all. The disease is very unique in how it affects people.Well thanks for reading :)Luv ya Rockerchick!

[doverette]

Hey there :) I'm so glad you're doing these videos.I've missed talking to you on MD Junction. I know we've both been busy.I'm sorry I haven't called yet. I wanted to make a note for all the viewers about Vascular EDS(the type my Dad has & I believe I have).My Dad didn't get hypermobile until almost 20 years after his first life threatening symptom of EDS. His lung collapsed when he was nineteen.He had EDS but he didn't have a lot of the symptoms the geneticists check for.More on the next comment

[dbadgones]

Omg i thought you were coudnt able to stand, but u did so i got very impressed it seems that u got even better and better in every video u upload, i know ur gettin better bcuz u are a Rockerchick!! i wish u the best, and keep on like that, luv ya!!... ur little friend jony.

[rockerchik76]

I am able to stand up, and walk some, but I just dislocate so much when I do that I fall! I think I seem like I am getting better because I am now fighting with all I have, so thank you!!! And thanks for the beautiful comment!!!

[keillz31]

@rockerchik76 i have this too and it seems at the same level from the vids ive watched really wishing you well keep up the fight hun and thank you so much for taking your time to show others about what we go through ive struggled explaining it so clearly x

[dancer92497]

I have Ehlers Danlos Syndrome Hypermobility type 2.......... I have some of the same challenges u do and others at first it was really hard 2 handle but now it doesnt really bother me (mentaly) but physcially its going 2 get worse as i (we) age ....... hope everything works out 4 u

[dancer92497]

@dbadgones

[pkrwd]

Thanks for the update Tracie. Hope you can get better? You are a very beautiful person.I dom wish i could do something? I will pray for you everyday!! joe

[oompaloompaman5]

I dont even know what to say...Thanks for keeping us all updated....

[BaconMan8910]

oorah, never give in sis, I know you wont luv ya

[LovelessWoman711]

awesome video sis im here for you always and forever!

love you!

im here for you forever tracie