Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Ehlers danlos syndrome

Jul 02, 2015 10:11 PM

Any chance someone else has eds??? I find it hard to find others that do.

Jul 03, 2015 9:31 PM

Gumy2115 I have EDS 3. I was diagnosed a year ago January. I'm in my mid 40s and have always wondered why I was so much more flexible than any of my friends. Now I know.

Jul 04, 2015 10:31 AM

Every rheumatologist has wondered if I have that because I have always been super flexible. I was a gymnast when I was a child balance beam, uneven bars, ect. I was able to put my ankles behind my neck like a pretzel and roll. That ended when I had scoliosis surgery. Funny you cannot do this with 19 inches of Stainless in your T spine. But even on bad days I can bend at the waist and place my palms flat on the floor. Apparently that is not normal. My hips have torn and stretched ligaments but I can still touch my ears with my toes. Too flexible? Blood tests have been useless. Time will tell, if I ever get insurance again.

Jul 12, 2015 7:41 AM

Hi ,I have jhm and eds ,and osteoporosis ,And now in a wheelchair at 46 years old

Jul 12, 2015 8:22 AM

LMB, I can place my hands flat on the floor to, but not the other with my feet. I use to sit cross-legged then walk on my knees, and bend my thumb to my forearm but no longer. I showed a doctor about it and he said I don't have it, I'm just over flexible. Putting my hands on the floor stretches out my spine and it feels good! 🙏🌼

Jul 12, 2015 8:43 AM

Oh, FlappysLady, you sure brought back memories with the sitting crosslegged and walking on knees across the floor. My sister and I used to have contests to see who could "walk" the farthest. I think it was her because my knees would hurt. LOL

My thumb not only touches the forearm on the under side of my arm, but also the back side! I can also "tuck" my thumb behind the knuckle of index finger. I remember grossing out classmates with this one. LOL

I used to stand with my one foot turned so I was toe-heel and heel-toe, then bend over and put both hands flat on the floor. There wasn't a spot on my back I couldn't reach to itch, I never knew that other people couldn't do this. I thought it was normal.

I wondering how my cousin could stand being so "stiff" that her fingers straightened only to the point they were straight! Mine curve backwards.

I had an Ortho doctor try to tell me, a week after the geneticist diagnosed me, that I didn't have EDS. I left that doctor for another reason, but his refusing to even consider that I had an illness he didn't know anything about helped in my decision to leave.

gummy, myself and the majority of my family has hEDS. Are you anywhere near Western New York? Knowing my luck you're not, but it's worth asking.

Jul 12, 2015 9:19 AM

LOL,
Flappsy.. Me and my younger brother used to do the same thing! I always loved to sit in what we called "Indian Style" and then, when I wanted to get something, I would get up on my knees and "walk"... We also used to have races across the living room floor. I used to be able to do a full split even though I was always heavy, I was also able to do what they called "the bird's nest" where I would bend over backwards and arched my back. Oh yeah (Fibro Fog Moment) it's called a back bend.... LOL!!! At any rate, I used to be flexible.. Now I'm stiff as a board and always in pain. Thanks for bringing back some good memories that I haven't thought about in a long time. I hope you all have a peaceful and less painful day. 💕🙏🏻🌻

Jul 12, 2015 9:19 AM

LOL,
Flappsy.. Me and my younger brother used to do the same thing! I always loved to sit in what we called "Indian Style" and then, when I wanted to get something, I would get up on my knees and "walk"... We also used to have races across the living room floor. I used to be able to do a full split even though I was always heavy, I was also able to do what they called "the bird's nest" where I would bend over backwards and arched my back. Oh yeah (Fibro Fog Moment) it's called a back bend.... LOL!!! At any rate, I used to be flexible.. Now I'm stiff as a board and always in pain. Thanks for bringing back some good memories that I haven't thought about in a long time. I hope you all have a peaceful and less painful day. 💕🙏🏻🌻

Jul 12, 2015 9:28 AM

Scaryann, I'm a GA peach. I've never been north of N Carolina. We wanted to travel to the NW and NE (we've been to the Midwest), but my health and having to quit work has got in the way.

I use to do some other things with my fingers, crossing the knuckles of the inside finger with the next outer finger. But I've gotten too stiff with arthritis to do what I did as a child, with my siblings in competition of course. Oh the things we did for fun as kids! My son in law's two youngest children are extremely flexible; one touches the back of his skull to his upper back & the other can do a split in a doorway with one leg straight and the other one going up the door jamb. It makes me hurt to see it. I told my daughter to look up EDS it she brushed it over. They're 9&10, so we'll see what happens as they grow older. Thank you for the memory lane fun! 🙏🌼

Jul 12, 2015 9:59 AM

FlappysLady,

I've never been South of the South Carolina border. LOL The one and only time I was in South Carolina it was for about four hours. My brother, a cousin, his wife, and I went down to drive our Aunt's U-Haul back to NY after Mom passed away. We drove down, packed their stuff, loaded the U-haul and drove back with only an hour break to try to sleep. We were all exhausted when we finally made it home again. Almost 30 hours straight, none of us remember the last two hours of the trip. I'm still amazed we made it home in one piece.

Jul 12, 2015 10:02 AM

Alwayzinpain,

I remember doing back bends! I have almost always had waist length hair and I would bend backwards far enough for my hair to lay on the floor! Now if I try that I'd end up falling down and breaking my neck! LOL

Jul 12, 2015 10:18 AM

ScaryAnn, I have waist length hair too. I did the same.. I have all I can do to put my palms flat on the floor without falling over on my face!! I still do love to dance though. I was always into music and love all kinds of dancing from swing to slow dancing to country and Latin (especially salsa dancing). I don't do it often and it's usually at a BBQ after a few beers... LOL!!! It's the only time I ever have a drink and then the next day I feel like crap. But I have fun and that's the main thing. This walk down memory lane had really put a smile on my face and is making for a very pleasant day. Thanks!! 😊😋

Jul 12, 2015 1:29 PM

Dancing was the one thing I never could do. When the good Lord was handing out coordination and rhythm, I must have thought he said something really bad and I said No Way do I want THAT! LOL

Jul 12, 2015 5:47 PM

Well I thought I was fairly good at dancing, or at least keeping up with the rhythm. That was until my kids & grandkids said I was embarrassing them! Lol 2 left feet I guess 🙏🌼

Jul 13, 2015 6:21 AM

LOL!!! You know what, Ladies, if you get up to dance and are having fun, it doesn't make a difference one way or another. I was "lucky" I guess and was blessed with rhythm and if someone is a strong leader in a dance, I can follow them. I still love to listen to music because I can get lost in it sometimes.

Jul 14, 2015 2:55 PM

Yes I did it , what I hear you call , I still can do a back walk over ! Hahah ok, it's got me 2 days to recover ,but you lot maked me do it , I did Gmynistis many years ago , so had to try , and I did it ! I'll not be doing it again but I did it

Jul 14, 2015 9:52 PM

EDS Type IV here. Diagnosed a year and a half ago, but have dealt with symptoms from the day I was born (with clubfoot, no less).

Ready to start relieving your pain?

Join Community