thank you for posting this video i just got diagnosed (sorry for the bad spelling) and it nice to see that i'm not the only one going through this!!!! thanks!!!:)
I've been doing some research on EDS and I think I might have it. My joints are all flexible like yours, my skins not quite as stretchy but I also bruise a lot. My joints are always popping out, but I can always pop them back in. .. I know there's no cure for EDS... so I'm debating on if its even worth dealing with....I get a lot of joint pain, but I don't like the idea of taking pain meds... I'm also afraid my doc will have no idea what I'm talking about if I ask about it.... is it worth it?
i was video-surfing ahwhile ago and saw your video on EDS, and i was like i can do that and my skin is even stretchier. And started researching more about it, and all the blocks started to fall together; my joint pains, my easily bruised and damaged and soft skin. So i got an appointment and was diagnosed with it. Thank you :)
@rodentrose what was the process by which you were diagnosed, i am 90% sure i have EDS but can't seem to find a doctor who knows anything about it. Where did you go to get diagnosed and what did they do?
hi, im gonna get tested soon for this disorder and was just wondering what your opinion was about my issues. First off i can do all of the finger tricks that you do like extending them really far. I can almost bend my hands almost parallel to my wrists. The last possible indicator is that my wrists, shoulders, and knees always pop out unexpectedly. Please Reply,
@Zamester theres a chance you have it or something related but only a doctor or in many cases doctors can properly diagnose it. It deffinently worth getting checked out
I man. I have EDS too. I'm almost 20 years old now. I used to be able to do things like you're doing in this video but doing them too many times took its tole on my joints. Don't keep forcing it! If you work at keeping your joints in a normal range of motion then you can avoid being in as much pain as many people with EDS are.
buddyboy, i am 50 yrs old and i remember 30 or more years ago performing for my uncles how i could pop shoulders and bend and touch my palms on the floor etc... all that does is stretch the joints more than i would normally do in an everyday situation, the only advice i can give you is not to stretch your joints more thanm you need to, try not to do it for everyone who asks for an example of how your condition effects you,
Helloo my brother has ehlers-danlos syndrome type 1 he has really soft skin, cut and bruises easily and has been in hospital millions of times, he has scars all over his legs and arms and there pretty bad and he is also super strechy just like you :D
Yes be careful...I only learned I had EDS this year at age 53. I have four artificial joints d/t severe arthritis - hips and knees. The knees are only 2 years old and one has to be redone. So keep healthy, stay normal weight as you are ~ and don't do the party tricks unless necessary for docs or once in awhile teaching. Hypermobility Syndrome and EDS/HM can be very very difficult in life for sure -- Thanks for teaching us!
Word of advice - go to college and stay away from manual labor ! I am not a doctor or anything but from what I have read and experienced personally with my lax joints ( not nearly as bad as yours are) is that your likely more prone to injury than they average guy and might end up tearing yourself up if you get stuck doing physical labor later in life
YOU SHOULD NOT DO THAT! O_O I have EDS too, and I'm already getting problems with my joints. And I'm only 16. BECAUSE I have been doing such thing like you did in you video. I have stopped doing such things, and I regret that I have done it in the past.
@TiramSmiles Rubbish. If you have EDS, your joints are going to be chronically painful. So, stop wearing it as some kind of badge and just get on with it.
@SenoraFabregas no not EDS. people with EDS have stretchy joints everywhere not just a certain few. alot of people are just hypermobile in a few joints but that doesnt mean they have it
@BuddyBoy091994 Keep in mind there are other factors as well though. The current scale only requires a major diagnostic criteria of 4 points on the scale. Thumbs to writs are one point each and fingers back are also 1 point per hand. That totals 4 points. Combined with 2 diagnostic criteria one could be positive for EDS. I have EDS but my elbows and knees don't bend back. However, I score more than enough to have been positively diagnosed,
@MissMochibon Again: wrong. I cannot do the thumb to wrist thing, yet my fingers will bend all the way backwards and my skin is like that of a Shar-pei dog. It's not so clear cut, people.
Right, I am saying that it IS variable. The thumbs to wrists and fingers back are just one example pair a person can have to be positively diagnosed. As I said, I cannot do the elbows and knees but I still have EDS. My point was that it is extremely variable and not all EDSers are the same.
Hi, iv recently been diagnosed with ehlers danlos syndrome, while it was obviuse from a young age there was something wrong, i had my usual party tricks, the skin(most prominent on my elbow.) fingers (i have 180degree mobility on almost every joint.) i am not however long limbed, "Thin build" im actualy the oposite, im rather built, im not a sporty person through choice, but my job doese involve heavly lifting, i think ill make a video with my brother would you mind if i made it a responce? :)
i also have EDS type 3 it sucks! i can do all that and alot grosser stuff i dont have strechy skin though! and poping your joints doesnt hurt im so used to it know i dont feel it i do feel it later though!
Sweetie, I hear your joints popping ; very loudly. Please be careful. You know this damages your joints. I hope you rested after making this video. Hugs Carrie.
Hello there! Thanks for sharing this video with all of us. My son has been diagnosed with Ehlers Danlos syndrome tipe3, he mas more or less the same things that you showed except his elbow. He has strechy skin, he has this hipermobility in the joins, he is quite laxe in the joints specially hands. He is actually 3 now. Did yo have any problems at school because of this, do you practice sports? how about ur writting? im quite curious about this. All the best to you sweetheart!
@ursulinda hi! yes i do have many problems with this in school. especially with other people. considering this is an invisible illness people tend to think your faking and its in your head and stuff. this happens to all of us. my EDS is to severe to play sports. i write well because my fingers dont bother me very much and i think its from playing piano for so long. its strengthened my fingers.
Dude! Stop doing your "party tricks"! It only damages your joints more. I know it's cool-looking (I've been known to "show off" too), but jeez! Learn to stabilize your joints, and build up the muscles so the tendons pull a little tighter (every little bit helps, IMO.) Iyengar-style yoga would really help you at your age -- it did me. Good luck!
what type do you have sweetheart ? Im 22 and I still dont know what type I hane but all I have is weak joints alilttle and alittle bit of streche skin
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.
Have the hand and elbow thing...never tried the skin thing but I have that too!! I'm pretty sure I have EDS...name a joint and I've partially dislocated it! I've just never seen a doc about it. What type do you have? Classic or hypermobility?
I watched your other video....you should be more careful with how you move. You could really screw up your joints later. I did too much with my wrist and permanently displaced a bone...got rid of the pain though :P
wow...I think my firend has it. She can bend her fingers all the way back, like to the point that her fingers are completely pressed against the back of her hand. I wonder if she does...Yaaahhh. I can put my leg behind my head, but thats just because Im special. lol
hey i have Ehlers Danslos, but im not suffering from it i like it, i have type 3 i believe i was told and i can do everything you can and more, id feel so stiff without it it would be weird o.O;
type 4 vascular and marfans syndrons are bad cases i wouldent want but i like my type 3, and i can stop my joins dislocating 99% of the time.
what treatment do get? i was never given any, not even pain killers, not in pain so i dont mind just people that have it say its painful o.O;
Your lucky. Everyone with EDS is different. Some have pain and some don't. It depends on how severe you have it. You obviously have an extremely mild case of EDS. I have to take Physical Therapy and take meds because of my EDS. I would still be a little cautious if I were you because you never kno with EDS.
Yes on both. I also have the scarring it shows on all of the pictures I've seen online. My knees started giving out and my hips dislocating when I was about 15, too. Right now my diagnosis stands at Fibromyalgia and Hypermobility Syndrome but hopefully I'll get to see this new doctor Monday and I'll know for sure. A question...how DO they know for sure? Is it a blood test and physical exam or can they only tell through genetics?
Thanks so much for this video. I was diagnosed with Hypermobility by my Rheumotologist and see a new one next week to ask whether the hypermobility is benign or EDS. I can do all the things in this video and really appreciate see it! Thanks for making it! :-)
and dude, dont crack your elbows open, if you do they will get worse and worse, they'll keep hyperextending more and more and that will result in injury, with time.
Thank you so much for making this vid and bringing awareness to this condition we suffer with!! I wish you the best and really admire you for putting this out there for the world to see!! Stay strong and and please make updates as to how your doing!! 5 stars!
thank you for posting this video i just got diagnosed (sorry for the bad spelling) and it nice to see that i'm not the only one going through this!!!! thanks!!!:)
spoonsonrice101 1 month ago
Thank you for posting this!
sarahdionna 3 months ago
I've been doing some research on EDS and I think I might have it. My joints are all flexible like yours, my skins not quite as stretchy but I also bruise a lot. My joints are always popping out, but I can always pop them back in. .. I know there's no cure for EDS... so I'm debating on if its even worth dealing with....I get a lot of joint pain, but I don't like the idea of taking pain meds... I'm also afraid my doc will have no idea what I'm talking about if I ask about it.... is it worth it?
luckiebabe88 10 months ago
This has been flagged as spam show
if you go to my channel you can see a video i made showing my flexible joints
luckiebabe88 10 months ago
i was video-surfing ahwhile ago and saw your video on EDS, and i was like i can do that and my skin is even stretchier. And started researching more about it, and all the blocks started to fall together; my joint pains, my easily bruised and damaged and soft skin. So i got an appointment and was diagnosed with it. Thank you :)
rodentrose 10 months ago
@rodentrose what was the process by which you were diagnosed, i am 90% sure i have EDS but can't seem to find a doctor who knows anything about it. Where did you go to get diagnosed and what did they do?
planetrock23 6 months ago
@rodentrose how were you diagnosed?
planetrock23 6 months ago
hi, im gonna get tested soon for this disorder and was just wondering what your opinion was about my issues. First off i can do all of the finger tricks that you do like extending them really far. I can almost bend my hands almost parallel to my wrists. The last possible indicator is that my wrists, shoulders, and knees always pop out unexpectedly. Please Reply,
Zamester
Zamester 10 months ago
@Zamester theres a chance you have it or something related but only a doctor or in many cases doctors can properly diagnose it. It deffinently worth getting checked out
BuddyBoy091994 10 months ago
Ehlers-danlos can also give you a marfanoid body habitus, so it's always good to not get the two conditions confused.
AskariWaryaa 11 months ago
I man. I have EDS too. I'm almost 20 years old now. I used to be able to do things like you're doing in this video but doing them too many times took its tole on my joints. Don't keep forcing it! If you work at keeping your joints in a normal range of motion then you can avoid being in as much pain as many people with EDS are.
Skysurge 11 months ago 2
i have EDS (classical type)
dude i love seeing this. I'M NOT A CIRCUS FREAK! WE'RE JUST COOL! :D
naquagesicnoon 1 year ago
I FRIKKEN LOVE YU YU WIERDOO !
mybieber95 1 year ago
@mybieber95 i miss you! :(
BuddyBoy091994 1 year ago
@BuddyBoy091994 MISS YU TOOOOOOOO
mybieber95 1 year ago
buddyboy, i am 50 yrs old and i remember 30 or more years ago performing for my uncles how i could pop shoulders and bend and touch my palms on the floor etc... all that does is stretch the joints more than i would normally do in an everyday situation, the only advice i can give you is not to stretch your joints more thanm you need to, try not to do it for everyone who asks for an example of how your condition effects you,
thinking1960 1 year ago
Helloo my brother has ehlers-danlos syndrome type 1 he has really soft skin, cut and bruises easily and has been in hospital millions of times, he has scars all over his legs and arms and there pretty bad and he is also super strechy just like you :D
Ohyessboy 1 year ago
Yes be careful...I only learned I had EDS this year at age 53. I have four artificial joints d/t severe arthritis - hips and knees. The knees are only 2 years old and one has to be redone. So keep healthy, stay normal weight as you are ~ and don't do the party tricks unless necessary for docs or once in awhile teaching. Hypermobility Syndrome and EDS/HM can be very very difficult in life for sure -- Thanks for teaching us!
ourstax 1 year ago
sooooo i can do all of that but i dont know if i have eds
shineyx95 1 year ago
Word of advice - go to college and stay away from manual labor ! I am not a doctor or anything but from what I have read and experienced personally with my lax joints ( not nearly as bad as yours are) is that your likely more prone to injury than they average guy and might end up tearing yourself up if you get stuck doing physical labor later in life
mah781 1 year ago
YEP
evilmonsterbear711 1 year ago
I can do the same things (except: 1:00).
AnnaLynne3 1 year ago
I think the leg trick and the arms around head thing is just because your skinny
because i have Type 2 EDS and can only do one leg and can't really fit arms and head (i have a big head xD)
PoopyPantyPoop 1 year ago
YOU SHOULD NOT DO THAT! O_O I have EDS too, and I'm already getting problems with my joints. And I'm only 16. BECAUSE I have been doing such thing like you did in you video. I have stopped doing such things, and I regret that I have done it in the past.
TiramSmiles 1 year ago
@TiramSmiles Rubbish. If you have EDS, your joints are going to be chronically painful. So, stop wearing it as some kind of badge and just get on with it.
johnnyboy2k 1 year ago
This has been flagged as spam show
dont do it anymore! my son and i have this and its it sucks! but it hurts ur joints worse so just do physical therapy
maxvidales 1 year ago
This has been flagged as spam show
dont do it anymore! my son and i have this and its it sucks! but it hurts ur joints worse so just do physical therapy
maxvidales 1 year ago
dont do it anymnre! my son and i have this and its it sucks! but it hurts ur joints worse so just do physical therapy
maxvidales 1 year ago
hey,
I'm just curious, my fingers are REALLY stretchy and i can do the thumb and finger thing but that's about it. does this mean i have it????
thanks
SenoraFabregas 1 year ago
@SenoraFabregas no not EDS. people with EDS have stretchy joints everywhere not just a certain few. alot of people are just hypermobile in a few joints but that doesnt mean they have it
BuddyBoy091994 1 year ago
@BuddyBoy091994 Keep in mind there are other factors as well though. The current scale only requires a major diagnostic criteria of 4 points on the scale. Thumbs to writs are one point each and fingers back are also 1 point per hand. That totals 4 points. Combined with 2 diagnostic criteria one could be positive for EDS. I have EDS but my elbows and knees don't bend back. However, I score more than enough to have been positively diagnosed,
MissMochibon 1 year ago
@MissMochibon Again: wrong. I cannot do the thumb to wrist thing, yet my fingers will bend all the way backwards and my skin is like that of a Shar-pei dog. It's not so clear cut, people.
johnnyboy2k 1 year ago
@johnnyboy2k
Right, I am saying that it IS variable. The thumbs to wrists and fingers back are just one example pair a person can have to be positively diagnosed. As I said, I cannot do the elbows and knees but I still have EDS. My point was that it is extremely variable and not all EDSers are the same.
MissMochibon 1 year ago
@MissMochibon Definitely. I can hyperextend every joint except my elbows (my elbows are actually less flexible than most people)
Skysurge 11 months ago
@BuddyBoy091994 Incorrect. I have EDS, but only have hypermobile fingers and shoulders.
johnnyboy2k 1 year ago
@BuddyBoy091994
LDalegaard 1 year ago
Hi, iv recently been diagnosed with ehlers danlos syndrome, while it was obviuse from a young age there was something wrong, i had my usual party tricks, the skin(most prominent on my elbow.) fingers (i have 180degree mobility on almost every joint.) i am not however long limbed, "Thin build" im actualy the oposite, im rather built, im not a sporty person through choice, but my job doese involve heavly lifting, i think ill make a video with my brother would you mind if i made it a responce? :)
xBLuRxGINGx 1 year ago
@xBLuRxGINGx sure i dont mind
BuddyBoy091994 1 year ago
i also have EDS type 3 it sucks! i can do all that and alot grosser stuff i dont have strechy skin though! and poping your joints doesnt hurt im so used to it know i dont feel it i do feel it later though!
summergirly1234 1 year ago
Sweetie, I hear your joints popping ; very loudly. Please be careful. You know this damages your joints. I hope you rested after making this video. Hugs Carrie.
cLundqvist 1 year ago
@cLundqvist yea i kno. i went to sleep! lol
i dont do them very often at all.
BuddyBoy091994 1 year ago
@cLundqvist It doesn't damage the joints at all - that is a myth. The popping is caused by nitrogen bubbles in the joint.
johnnyboy2k 1 year ago
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
vegandanielle 1 year ago
Hello there! Thanks for sharing this video with all of us. My son has been diagnosed with Ehlers Danlos syndrome tipe3, he mas more or less the same things that you showed except his elbow. He has strechy skin, he has this hipermobility in the joins, he is quite laxe in the joints specially hands. He is actually 3 now. Did yo have any problems at school because of this, do you practice sports? how about ur writting? im quite curious about this. All the best to you sweetheart!
ursulinda 1 year ago
@ursulinda hi! yes i do have many problems with this in school. especially with other people. considering this is an invisible illness people tend to think your faking and its in your head and stuff. this happens to all of us. my EDS is to severe to play sports. i write well because my fingers dont bother me very much and i think its from playing piano for so long. its strengthened my fingers.
BuddyBoy091994 1 year ago
Dude! Stop doing your "party tricks"! It only damages your joints more. I know it's cool-looking (I've been known to "show off" too), but jeez! Learn to stabilize your joints, and build up the muscles so the tendons pull a little tighter (every little bit helps, IMO.) Iyengar-style yoga would really help you at your age -- it did me. Good luck!
hecalledmephooli 1 year ago
Ah gosh, I just saw where you said you don't do them any more. Good for you! Good luck, kid.
hecalledmephooli 1 year ago
what type do you have sweetheart ? Im 22 and I still dont know what type I hane but all I have is weak joints alilttle and alittle bit of streche skin
shantee1687 1 year ago
is it ok if i post this on my facebook ?
rcollins007 1 year ago
@rcollins007 sure
BuddyBoy091994 1 year ago
Besides the stretchy skin, and opposite going elbows & the thumb, it seems like from what you do....is similar to the things I can do.. :X
Insaneymaney 2 years ago
This has been flagged as spam show
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.
arik1912 2 years ago
you are the chosen one.
Chrome9129 2 years ago
what?
BuddyBoy091994 2 years ago
This is a good video! I'm going to forward to Dr. Tinkle. Is that ok?
angelEDSer 2 years ago
yea angela of coarse!!
BuddyBoy091994 2 years ago
Have the hand and elbow thing...never tried the skin thing but I have that too!! I'm pretty sure I have EDS...name a joint and I've partially dislocated it! I've just never seen a doc about it. What type do you have? Classic or hypermobility?
doubtnichts 2 years ago
i have the hypermobility type
BuddyBoy091994 2 years ago
I watched your other video....you should be more careful with how you move. You could really screw up your joints later. I did too much with my wrist and permanently displaced a bone...got rid of the pain though :P
doubtnichts 2 years ago
i dont anymore
BuddyBoy091994 2 years ago
i dont anymore
BuddyBoy091994 2 years ago
wow...I think my firend has it. She can bend her fingers all the way back, like to the point that her fingers are completely pressed against the back of her hand. I wonder if she does...Yaaahhh. I can put my leg behind my head, but thats just because Im special. lol
SimplyMeStephanie 2 years ago
if thats all she can do then no she dosent have it
BuddyBoy091994 2 years ago
oh ok. Good video though, showing what it actually does.
SimplyMeStephanie 2 years ago
thanks
BuddyBoy091994 2 years ago
hey i have Ehlers Danslos, but im not suffering from it i like it, i have type 3 i believe i was told and i can do everything you can and more, id feel so stiff without it it would be weird o.O;
type 4 vascular and marfans syndrons are bad cases i wouldent want but i like my type 3, and i can stop my joins dislocating 99% of the time.
what treatment do get? i was never given any, not even pain killers, not in pain so i dont mind just people that have it say its painful o.O;
sladehiro 2 years ago
Your lucky. Everyone with EDS is different. Some have pain and some don't. It depends on how severe you have it. You obviously have an extremely mild case of EDS. I have to take Physical Therapy and take meds because of my EDS. I would still be a little cautious if I were you because you never kno with EDS.
BuddyBoy091994 2 years ago
Yes on both. I also have the scarring it shows on all of the pictures I've seen online. My knees started giving out and my hips dislocating when I was about 15, too. Right now my diagnosis stands at Fibromyalgia and Hypermobility Syndrome but hopefully I'll get to see this new doctor Monday and I'll know for sure. A question...how DO they know for sure? Is it a blood test and physical exam or can they only tell through genetics?
OzarksUSA 2 years ago
Thanks so much for this video. I was diagnosed with Hypermobility by my Rheumotologist and see a new one next week to ask whether the hypermobility is benign or EDS. I can do all the things in this video and really appreciate see it! Thanks for making it! :-)
OzarksUSA 2 years ago
your welcome.
is your skin stretchy? do your joints dislocate?
BuddyBoy091994 2 years ago
i can do all of that but i dont suffer from EDS
and dude, dont crack your elbows open, if you do they will get worse and worse, they'll keep hyperextending more and more and that will result in injury, with time.
jo3scale 2 years ago
cool.
you have EDS?
BuddyBoy091994 2 years ago
Thank you so much for making this vid and bringing awareness to this condition we suffer with!! I wish you the best and really admire you for putting this out there for the world to see!! Stay strong and and please make updates as to how your doing!! 5 stars!
rockerchik76 2 years ago
Thanks for the comment Tracie!
I really appreciate all of your support.
Us EDS'ers appreciate your vids too!!
BuddyBoy091994 2 years ago
I know someone who pretends to have it. It was first arthritis they pretended to have. They do it for attention.
extape 2 years ago
really?
how can someone pretend to have it and why would they want to pretend to have such a horrible disease?
BuddyBoy091994 2 years ago
He makes me sick. I trid calling him out on it but he ran off.
extape 2 years ago