A few data points:

[conuly]

1. When I was a child, my knee used to lock up sometimes if I had my leg bent. I couldn't open it, and it felt like it had slid out of joint. I still get twitchy if I have to crouch down for more than a few seconds. The last such incident probably occurred in my 20s.

2. I've always had weak ankles, prone to twisting.

3. A few years ago I sat down in the Bronx Zoo and when I stood up again I popped my hip, causing periodic recurring pain and aches - notably this week, where even sitting still on the bus was too much.

4. My sister used to be able to clasp her hands behind her back and bring them above her head to her front without letting go.

5. Yesterday I witnessed my mother casually bringing her foot up to her face to demonstrate that she could. She does that periodically, and at this point I suddenly put together points 1 - 4 and realized - THIS IS ALL HER FAULT! She's got some sort of freaky hypermobility genes, and she passed them on to us, and she and Jenn got the fun parts* while all I got were the twisted ankles and the hip pain! That's utterly unfair, and I told her so right then and there, too. I got completely cheated somewhere.

Edit: I'd forgotten, but well into my teens I used to enjoy sitting with my legs in a W because it was fun, and likewise I can still catch my foot in my hand behind my back while leaning over. (Though not right now, because my hip is owie.)

* Jenn's flexibility isn't all fun and games, but I'm fairly certain that our mother hasn't suffered one day over this. She doesn't even appear to have any arthritis, and I know that runs in her family.

Comments

[wpadmirer]

Oh, that sucks! Hypermobility is usually a bad thing.

[conuly]

I didn't even get any cool party tricks.

[gatheringrivers]

It might run on a "spectrum" of how badly you're affected? It's been a few years since I talked to the friend with hypermobility, so I don't know for certain.

[conuly]

I generally assume everything runs on a spectrum of how badly you're affected.

[the_siobhan]

Have you been tested for Ehlers-Danlos Syndrome? Because that really sounds like it.

[conuly]

I don't think I quite have the usual hypermobility required for that. I just wish my hip would stop hurting right now. ("Figure out what the deal is with my hip/ankles" is on my list of things to do once I'm gainfully employed.)

[conuly]

Also, moving past medical jargon it looks like most EDS variations have skin differences, and without groping everybody I meet I kinda feel like my skin is utterly normal and heals at the usual rate without odd scarring.

[boxofdelights]

Aaaugh I used to get that knee thing when I was pregnant. It felt like one of the moving parts had moved into the wrong spot, and it felt like if I tried to straighten the leg or put any weight on it, I was going to tear something. There's a pregnancy hormone called relaxin that loosens up all your tendons, which is probably what caused it for me. I never found out how to prevent it (other than don't bend your knees) or how to pop things back where they belonged. It was scary!

[conuly]

Scary and very painful if you panic and try to open your leg anyway. I'm glad I never did my knees any permanent damage that way, and hope you didn't either.

[sara]

Isn't it normal to be able to put your feet up to your face? That's normal in most of my family. Some of the guys can't do it but many of them can, and all the women can. I can put my heels on the back of my head, actually (though not down to my neck, even when I'm at my most flexible).

Your sister and the arms thing does sound unusual to me.

[conuly]

No, I don't think it is normal - and even if it is, it's certainly not normal the way my mother does it, sitting straight upright without moving her head at all. She continually gets comments on it when she does it around people who don't know that this is something she does frequently - and then more when they hear that it is!

Of course, people can extend their flexibility, and what's normal for a person who does a lot of stretching to that end will differ from what's normal for a person who doesn't - but believe me, my mother is on the less effortful end of that spectrum.

[hamimi_fk]

Mase loves to W sit... He can lay his entire upper body on the floor while doing it. I'm gonna take a pic just to show how horrifying yet impressive it looks.

Mase also has weird bendy fingers, a trait he inherited from my sister (his birth mom). It actually freaked out his first grade teacher at first until we told her it's just genetic. I'm not sure where my sis gets it from because only she is like that but I suspect it's something from my mom's gene pool. She also has a touch of scoliosis so I have to keep an eye on Mase for that.

[conuly]

I can bet it freaked out his teacher!

[marahmarie]

I have very slight hypermobility - I can twist my arms to put my hands palm up (instead of like, twisting my wrist). Apparently most people can't do this because their elbows stop their arms from twisting all the way around. Mine don't.

And I heal slooooowly, especially skin or flesh wounds. And have had bad/weak ankles for as long as I can recall, which is sort of a PITA when your favorite things are walking, running and dancing (had to give up running by my late teens).

But outside of that I'm weirdly not flexible/on the EDS spectrum at all - forex, I can't do a split, which to me seems like a bare-minimum "more flexible than the average" move.

Which has led me to wonder if hypermobility can literally be limited to a certain part or parts of the body *recalls girlfriend in high school who could wiggle ears. I don't remember her having other flexible feats besides that one*

Oh, and I used to do the W, too. Up until recently (the last few years) I also used to lay flat on floors, then throw my legs behind my head to "relax" (it used to feel really good, something I'd done since childhood) so in that sense there's some added flexibility too, but probably still not enough to write home about.

[conuly]

Oh, yeah, I could never do a split either, not even when I was taking dance class as a kid.

[cesy]

Yeah, some hypermobile people get all the flex and none of the pain, and some get a little bit of flex and lots of pain - it's two spectrums that don't necessarily match.

[conuly]

It's not fair, is what it is.

[malinaldarose]

I used to sit like that well into my twenties because it was more comfortable for me than tailor-fashion. Can't do it now because I'm 51 and it makes my knees hurt. Can't sit tailor-fashion, either because it makes my knees hurt. On the other hand, I'm 51 and most things hurt at some point.

[conuly]

51 seems early for a lot of aches and pains, though. But maybe I only think that because I'm in my mid-30s - when I was very young it sure seemed ancient.

[cactuswatcher]

For I guy, I had hypermobility, nothing like some of the girls in the family, but was very flexible.

Into my teens my ankles would occasionally bend under while I was walking, and I'd accidentally take a step on the side of my shoe.

Using my other hand I could bend my fingers backward 90 degrees without pain. Demonstrating it made other people wince. Contorting my hands was no problem. If something got trapped in a odd space I could often reach in with my hand and get it when others with smaller hands couldn't even get through the opening. Playing the guys' game of trying to squeeze the another guy's hand in a handshake till it hurt, I always won. I'd let them squeeze as hard as they could, (it never hurt me much despite how much my hand got twisted), wait a moment for effect, then spread my fingers sideways and come down hard with them outside the other's hand. They would always quickly yelp.

I could sit in a tight W (ankles next to butt) into my 20's but not a spread one, which hurt. The tight W hurt less than sitting on my ankles.

I've got arthritis now and my fingers won't bend like they used to. I can still bend them backward, but not as far. Sometimes doing ordinary tasks my hand will get in an odd shape and painfully lock up, and I have to try over and over to get the task done without recreating that painful shape.

[conuly]

Into my teens my ankles would occasionally bend under while I was walking, and I'd accidentally take a step on the side of my shoe.

Been there, done that.

I'm sorry about the arthritis, though :(

[kengr]

Dunno if it counts as hyperflexible, but I can lay flat on my back, put the soles of my feet together, and move them up until my lower legs form a straight line (so my legs form a triangle with my thighs as two sides and the lower legs as the third).

That doesn't sound so hard? When I do it, both knees are resting flat on the bed/floor/whatever.

Most folks who try have their knees well above the surface.

[conuly]

Sounds super flexible to me.

[alessandriana]

I'm also on the hypermobility end of the spectrum (runs in the family, there's a clear line of bad knees straight from my grandma through my mom down to me). One time I was walking down the street and my knee very suddenly refused to hold any weight; I had to hop over to grass and sit down for a while before it would work again. In hindsight I think it may have been my kneecap just randomly dislocating...

[conuly]

*hugs*

[thewayne]

Hypermobility can be a medical problem in later years, as you've found with your weak ankles and knee problems. My wife has hips like yours and when doing yoga, had freakish ease with some poses and crazy difficulty with others.

[conuly]

Yes, both my mother's mother and her maternal grandfather suffered from early-onset arthritis which I feel certain must be related. (Interestingly, if I'm following all this correctly, that same grandfather is the start of five straight generations of chronic migraines... which do seem to be common in people with hypermobility. At least, that's what Google thinks.)

[alatefeline]

Soooounds familiar yep. As a mildly bendy person with intermittent joint owww and related conditions and no goddam diagnosis because it hasn't TOTALLY wrecked my life.

*double 'flying bird hands' just because*

[conuly]

*glances at hands*

Nope, they don't bend that way. I'm just not that flexible in any useful, practical way.

[fairestcat]

Oh man, I too have the obnoxious hypermobility issues and I hate them.

I too used to sit with my legs in a W as a kid/teenager.

I've got this really weird one-sided hypermobility where my left hip turns out further than you'd expect. I can easily bring that foot up to my shoulder in the front. Meanwhile my right hip hates turning out so much I have trouble crossing my legs, but I used to be able to tuck that foot into my armpit while standing upright.

And now I have bursitis and arthritis in both hips, an ankle that pops any time I rotate it, and a standing date with my physiotherapist every 2-4 weeks.

The hypermobility and the early arthritis are both entirely my mother's fault too, and both of her daughters inherited it. My mom has bad arthritis in her hips, her hands (she was a knitter/crocheter/cross-stitcher for years), and her shoulder (broken twice), and my poor sister developed arthritis in her jaw when she was working in telephone support.

[conuly]

Oh, all that arthritis, it sounds awful.

[spikethemuffin]

Anecdata: had a steprelative who had hypermobility issues, and weight training helped. She started out with a physical therapist, IIRC, though, and I'd imagine you might talk to your health care provider about that.

[altamira16]

I was going to suggest this. A friend who has very mobile joints from the gymnastics she did as a child was having problems. She eventually realized that she needed to do strength exercises so that her muscles could help stabilize the joints that were overly flexible.

[steorra]

I don't think I have any hypermobility, but I do have one neat body trick that I can do that most people can't.

Curl fingers so that fingertips are against the fold where the fingers meet the palm. Maintain baby finger in that position, unfold the others to straight, no touching with the other hand.

I can do it better with my left hand than with my right but I can do it reasonably well with both hands.

I discovered this when I was in my teens and can still do it.

[conuly]

Nifty!

[dhampyresa]

my mother casually bringing her foot up to her face to demonstrate that she could

Is that not a thing people can do?

[conuly]

Judging from the reactions of others, no. This is not.

[greghousesgf]

hope you feel better soon!
P.S. I used to live in New York when I was a kid and I loooooooved the Bronx Zoo!

[conuly]

Thanks :)

The Bronx Zoo is nice, and worth the trip from Staten Island, but they seriously need more toilets and water fountains.

EDS underdiagnosis and bad news

[flamingsword]

Ehlers-Danlos IS a spectrum disorder, but in much the same way that autism is. You dont just have a scale between "can function" and "can't function", you also have a buffet of symptoms beyond hypermobility like fragile skin, slow healing, friable circulatory system (those migraines you were talking about go here), low blood pressure, weak immune system, dislocations, and bowel problems. Because only some people have the requisite hypermobility, the other forms dont tend to get diagnosed without sinking thousands of dollars into different specialists. My cousins have the diagnosable form, my uncle and I are just extra bendy with occasional dislocations and migraines. The second cousin who had the original diagnosis in the family sunk $11K into doctors to figure out what was going on.

If you think EDS is what it could be, dont be shy about it. Google a doctor near you that even knows what it is, march into that doctor's office once you have the money and be like, I'm pretty sure I have this, and I need genetic testing to confirm it. Then get into physical therapy and learn what exercises will help, which stretches will harm, and possibly get your paper trail together to go on disability if you need it later. The chronic pain *can* get worse, and being prepared is your friend.

Re: EDS underdiagnosis and bad news

[conuly]

bowel problems.

Constipation or diarrhea or...?

[elenbarathi.livejournal.com]

Yeah. Joint hyperplasia is comorbid with autism spectrum. I've got it too: can change from sitting in a W to sitting cross-legged and back again without raising my butt from the floor. I go to my chiropractor (applied kinesiologist) once a week to get everything that's out of place put back in. My poor daughter can't do that, so her ribs, hips and neck are constantly out of alignment - she twisted her ankle badly in grade school, and it's never been right since.

Besides regular adjustment or other professional body-work, the only things I know that can be done are: posture, balance, strength and flexibility exercises such as Pilates; contrast therapy (alternating hot and cold to relieve pain and stiffness) and Epsom salt soaks (or magnesium oil, but that's pricey and more trouble than it's worth.)

[conuly]

You know, I kinda knew that, but I never put it together with my weak ankles, nor my weak ankles with my hip pain or wonky knees. (Or, apparently, everybody's chronic migraines, my mother's weird heart murmur, the early-onset arthritis of both her mother and her maternal grandfather - he is, of course, the founder of our hereditary migraines - my chronic childhood nosebleeds and current heavy periods, and the fact that both Ana and Jenn can lean all the way down and put the back of their hands flat on the floor. The list of things that all associate back with hypermobility is broad, and I've spent the past few days staring at my family trying to determine if their irises are actually blue-ish.)