(OT) Very weird...even for me!

[milivica]

Ok, here's the deal. I found out today from a doctor, that my hips which have been hurting for a little over 12 years, but extremely a lot for the last few years are not arthritic like I assumed, they are continually being dislocated and that's why they hurt so much.

She asked me on a scale of 1 to 10 how much they hurt...I really hate those questions, cause I have no idea how to answer. I never do. I assume it has something to do with having aspergers, I have a real strange sense of pain sometimes. I just know they freakin hurt.

JUST IN CASE YOUR KIDS DO THIS I want to describe...when I walk, I have a weird nerdy schlepy posture - I never realized it until I saw myself walk on video, my walk is very awkward I lean forward a bit and just sort of schlep along. I have memorized not to 'relax' too much when I walk such as swinging my hips. If I do, my hip makes a deep CLUNK and I fall cause my leg (that is attached to the hip that popped) sort of stays behind and doesn't come forward (which is why I fall). It's a bit like what happens when you're leaning all your weight on one leg and some smart arse hits the back of your knee with the weight on it, and it buckles and you about fall.

MOSTLY, I dislocate it when I'm standing and waiting, and like leaning my weight on one side. I'm bored, waiting, so I pop it in and out in and out over and over, like say in the driver's license line or post office or a grocery store line. It's like a habit. Because the pain is worse than the boredom, I eventually stop.

I had no idea I was actually dislocating it, I've 'teased' about it and especially my husband, cause when I do it it sort of looks like I have a compound fracture where my leg meets my hip - but it's not through the skin and bleeding of course. As I do it, you hear this deep 'thud' 'thud' 'thud' but it's low and deep, not like cracking a knuckle, more like when you fall and hit your knee on the sidewalk.

Can you tell my gross motor skills suck really bad from my examples so far?

Anyhow, when I do this to dh to bug him, not only is there a sound but there's a real big sort of nub or bump that pops out, about the size of a 1/2 a baseball but a bit more narrow. I always thought it looked kind of cool, in a creepy way like "Ewwww, look what I can do!"

Also, I hold my hand backward like a waitress holding a big serving tray, my fingers bend back to my wrist.

Also, I never could sit indian style near as comfy as with my knees together, and my feet out to the side so that they sort of are shaped like an M on the floor instead of a pretzel.

So, IF ANY OF YOUR KIDS sit with their legs like an M more comfy than they do like a pretzel, check their hips!

Honest, I had no idea this was such a big deal. The doc grossed out when I touched my thumb backward (not forward) to my forearm. I have other weird flexible things like that too but she didn't want to see.

She's sending me for x-rays and to an ortho. She said IF it's what she thinks (I can't recall the name she said but bilateral something) then when the pain gets too bad for me, I have to get new hips. I grabbed my hips and I said, "Can they be smaller?" and she didn't laugh. She was really dry. Yeesh. I'm the one with dislocating hips, shouldn't I be the crabby one.

Anyhow, we'll see. I'm not in a rush. The ortho appt isn't until Dec 18. Whatever. They really have hurt for years though, mostly when I try to sleep. The funny thing is, the hip I'm not laying on when I lay on my side, is the one that hurts the most...and I've even commented to dh it feels like it's being ripped out of the socket. Well, it was actually. Oh, and the doc said I'm like this cause it's probably heredity (I'm adopted so ok if you say so, could be) and my ligaments are like too laxed, something like that.

Might have been nice if someone noticed this for me oh, say a little over four decades ago!!! Grrrr. Yeesh. Am I the only one that had a family doc that when he examined you, ya had to hold your nose cause his cigarette smoke choked ya to death and it was 'rude' to cough.

Woops almost forgot...here's a good diagram of what both my hips do all the time. My hip would be the example on the right of the diagram. http://www.dinf.ne.jp/doc/english/global/da****dwe002/dwe002g/dwe00220g01.gif Also, if any of you can do this with your hips too, stop it! Cause it's really going to hurt someday when you're 43 - which - is a prime number so I knew something would really suck. Can't wait to be 44. (yes I know that's only superstition)

[tgrimes]

OMG that is too funny you had a doctor that smoked DURING the exam. Do you remember when people used to smoke in the grocery store and butt their cigarettes out on the terazzo floors? We had a publix nearby that always smelled like cigars.
Sorry to hear about this hip thing, I hope you don't have to have hip replacement. I hate that you have to go to the ortho right before Christmas too, how will that affect your mood at that time?

[Mother's Heart]

Hi Mili, what a lifeless doc, couldn't even laugh at your terrific wit! :P

I'm familiar with the stuff you're talking about. Want some terms?
The hip can dislocate (completely out of joint, requiring manipulation to return it to joint) or it can 'sublux' (partial dislocation.)

Subluxations are common with people who have lax joints, and those with high spasticity. People with REALLY lax joints associated with connective tissue disorders (for instance: Ehlers Danlos Syndrome) dislocate constantly.

My hip does the clunk thing when I walk...really noticeable to others early in the morning when all's quiet in the house.,..so I recognize your description. I do it with my shoulder too.

the hip surgery is NO PICNIC. I've known several neuro kids who've had one version or another of it done...NO PICNIC! Several folks on Child Neuro have been there...so if you get closer to that and want info you could ask for enlightenment from those experienced folks over there. I can't imagine how you could do the surgery, well, the recovery period with the responsibility of Vincent. You would have to be the one being taken care of for an extended time. (quit popping that baby outta there!)

The sitting with your legs out to the side is often called W-sitting and yes, it can lead to hip arthritis and hip subluxations/dislocations. It's a practice much discouraged by p.t.s for neuro patients. I've spent ages trying to teach alternative methods of sitting but this position is so much more comfortable and stable for neuro kids it's a tough habit to overcome. trivia: therapists working with DS would be able to tell in an instant if he'd had a recent growth spurt because kids will revert to w-sitting to cope with the new body, they seek more stability while they adjust.

both my kids have extreme joint laxity and always could flex to obnoxious looking positions. And it is creepy to take my son's hand and forearm in your hands and stretch his wrist out. It just keeps going, and going...


the awkward walk and the laxity are both common for ASD spectrum folks. hmm....could you be on the Spectrum Mil? ;)

[milivica]

Me? On the spectrum....spectrum of what?

Hee hee.

I'm going to guess, that I'm in the category of joint laxity, the sublux thing you mentioned. I'm not sure if I have to manipulate it to get it back in...what I do is sort of take my weight off and twist a little and it pops back in without me touching it. It's really a quick thing, I do it all the time while bored and waiting. I remember now, how all the time people would say "she could be a contortionist" to my ma. I also remember the day I did a backbend and realized my head touched my butt. I used to lay down on my stomach, and have my stepsister pull my legs over my body - if I kept my legs straight I could feel my butt touch my head. If I bend my knees the back of my heels would rest on my shoulders like the letter O.

Grimey, it won't effect my Christmas mood. I'm stoked cause we're having an r.....D.....I Christmas (boom boom boom boom) :D :D :D . I got me some of that 'flexible thinking' now (to go along with my flexible hip joints). I mean, this hip thing just is what it is. It didn't just happen (that might freak me out in a bad way), I just found out what it is, so have words to attach to what the hips always did. Just yesterday, I really paid close attention to my movements and made sure not to pop it of joint, and I swear it hurt less than usual last night. Anyhow, what will be will be. I'm not having dislocating hips and living in Afghanistan, so see it's really not a biggie relatively speaking. But it sure is weird!

My friend and her son and me and my kids are going to the movies this morning. She's a nurse, I can't wait to show her what my hips can do. Her son has spina bifida (Carmen is already planning to get married with him someday, yeesh, slow down there Carmen) and one of his hips pops in and out all the time she said. Anyhow, the pain really sucks, but it's still a darn cool trick! My hips will probably be killing me from having to 'show off' my new trick (old trick, new verbiage - 'dislocated') but then again, I only have 2 friends so it's not like I'll be doing it all day every day.

[RathyKay]

She beat me to it! I was going to say W-sitting, too. Mili, you're looking at it from your view. Usually, it's the therapists looking at the kids, which is where the W comes from - the upside-down M. And who is going to name it? The observer, or the "kid" doing it?:p (Guess you're not as old as you thought!)

I have no personal experience with hip surgery (thankfully!), but from all I've read from those who have gone through it with their kids on Child Neuro, it's a loooong recovery. I hope you can avoid surgery. On the other hand, I don't know how bad your pain is:(. Only you can decide if it's worth it.

[LIZARD]

Okay...more weirdness...

I didn't know 'til I was 23 :o, but I have a partially dislocated left hip. I have always had a limp as a result of it (and scoli, which also developed from it), and I stand with my pelvis tilted to the left. It wasn't until I clobbered my tailbone in a fall on ice that all of this was discovered.

After several years of screaming and b!tching about my limp and all the grief I'd had to put up with at school from it, I finally got 6 months of PT in sixth grade. One of my exercises was to W-sit and sit cross-legged. I am 41 yo and can do neither. I have decided that my goal weight reward will be investigating getting the hip fixed to (I hope!) finally walk like a normal person and not (as a classmate once said), a "drunk chicken." :o

LIZARD :o

[MomOTwins]

Mili, this sounds like "bilateral congenital hip dysplasia". This is a really "cool" condition where the hip socket (think of a cup) isn't big enough to accomodate the ball at the top of your femur. It is frequently first diagnosed when you have that pre-teen growth spurt, since different parts of your body are shooting up at different rates.

If the muscles at the joint are especially strong, you usually don't need to worry about it, as the joint will eventually grow appropriately to fit. However, if you don't have super-strong muscle tone, the top of the femur can pop out of the socket :eek: !!! Yep, this can be really painful and some folks can't pop the dratted thing back into the socket without medical intervention (surgery). You are lucky that you can pop your's back without major problems!

Because the hip has an inherit weakness, you will be more likely to get arthritis there, and even may get extensive wear of the cartilage that lines the joint (think of it as a giant rubber washer lining the socket). If the cartilage breaks down enough, you'd end up with grinding (:eek: :eek: ) of the ball-and-socket joint, with hip replacement being the eventual outcome.

My ex- had it when he was a teenager and needed to have both hips body-casted until the hip socket grew enough to accomodate the faster growing leg.

The human body is indeed a strange and wondrous thing, isn't it? Oh yeah, for an animal model of this, think about really inbred golden retrievers. They are notorious for having this kind of problem.

Good luck with the orthopedic appointment, let us know how it turns out.

[JungleWoman]

Hey Mil,

I noticed when I worked out for the first time with 'walk away the pounds' that my hip has a catch in it.

Sometimes when I walk, it will pop and will send me to the ground. It hurts SO bad! Of course, the kids and hubby laugh because it looks like Im just a klutz.

I never thought it could be much more...

[Isabelle]

my LS had a shorter leg with a weak hip joint, the orthopedic fixed with special shoes. my dd got a special insoles for her knee pain.
i hope they give you first exercises to strength your hip muscles and special shoes to help you with your posture before you get to the point of replacing both hips.
decades ago it took 6 months for one of my teachers to recover enough from one hip operation !!! then to wait another 6 months to do the next one. now surgeons are doing both in one operation using titanium metal or space metal and the recovery and physiotherapy a mere weeks...be happy you would trigger alarms at the airport....

[milivica]

Isabelle, I'm totally not worried about hip surgery, cause even if I needed it now (I won't know till I see the orthopedic person) it's going to be up to me, and I'd say no.

JW, yes, like you're saying, sort of a pop that is so quick, you don't have any time to stop your motion so fall on your side/face HARD. I don't even have time (or more likely the coordination) to at least land on my knees and put my arms out to brace for the fall. I fall like a brick wall would fall, or a tree, just over and BOOM then I bounce a few times quick. Ok, just saying that, and visualizing it, I bet it looks hilarious - like "hey stupid at least put your arms out!"

MomOTwins, rofl rofl rofl...super strong muscle tone HA! Only my verbose jaw muscle, hee hee. I could totally do this as a little kid too. I showed my friend (the nurse) today and she said WOW and said it's like what her child's (with spina bifida) hip does but only one of his do it. It's hard to know how objective I'm being, cause I want to believe what I want to believe....but I swear the pain is already better cause I'm aware of the pain now, so, I walk and sit differently....like we went to the movies today and when I crossed my leg and felt that awful pull I literally thought the words "better not do that" and uncrossed them. So at the moment, I'm sort of a living breathing example of that joke where a guy goes to the doc and raises his arm and says "Doc, it hurts when I do that" and the doc says "then don't do that". I realize it might sound totally illogical, but I really never realized just how continually I ignore pain, I mean I feel it, but I have like a radar problem locating it specifically. I talked to the RDI consultant about it once, she said it was typical for asd. Related to self awareness. I talked about it here before, for some reason I can't think of an analogy....I suppose it's a bit like this: If you go out in the morning in the summer, and it's 70 and gradually increases to 85 in an hour, you think "wow it got kind of warm" but stay out. If you are in a house that is 70 and walk out into 85 you think "wow it's freaking hot" so might go back in. The temp, 85, is no different in either example, but you only react in one example. Not the best analogy, but the best I could think of cause really I don't understand why I don't react or try to comfort myself or alter my body position when I'm in pain. Yet, sometimes with very very minor pain I totally react like say a cardboard cut, woah, it throbs, I know exactly where the pain is even though my whole finger or fingertip hurts, I feel it for days and avoid hitting it and pamper it. But hips that dislocate, I just sit there with the thing out of socket, it's very painful but more so annoying or distracting, it's a big area of pain like the whole hip area, not small like a paper cut so I can't map it or find it or something, so can't or don't focus on it and alter my position to create less pain. But, now that I know exactly where the pain is (I looked it up on the net on a diagram) I'm aware of it, and wow this morning when I woke up it hurt sure, but not with the deep deep aching I have usually.

Liz, if your walk doesn't bother YOU or doesn't make you physically uncomfortable, invest that money in some other extravagance, like HDTV or something. I walk in an awkward way too...at least I sure thought so when I saw myself on video, omg, that was really shocking (in a bad way). So you're not the only one. I don't walk like a drunken chicken though, more like someone that is gravity challenged, I tip forward just a little, and my feet often scrape the ground so I must not pick them up very much. I look like someone trying to adjust to a breast reduction or something.

RathyK, I had no idea there was even a word for that, I was trying to figure out how to describe it. So cool there is a word, W-sitting. I just know that no one else in kindergarten did it, and, throughout school when we'd 'warm up' in gym class I could easily do that, plus any other stretches like that plus lay backwards and do that.

[LIZARD]

Liz, if your walk doesn't bother YOU or doesn't make you physically uncomfortable, invest that money in some other extravagance, like HDTV or something. I walk in an awkward way too...at least I sure thought so when I saw myself on video, omg, that was really shocking (in a bad way). So you're not the only one. I don't walk like a drunken chicken though, more like someone that is gravity challenged, I tip forward just a little, and my feet often scrape the ground so I must not pick them up very much. I look like someone trying to adjust to a breast reduction or something.


MiliBaby!!!!!!!! :D I wuvs ya!!!!!!!! :)

Thanks, darlin'. My biggest concern about it is that, as I get older, it may become more of a problem in terms of difficulty or pain. It doesn't bother me, save for my plantar fasciitis, which I have in large part because of this (better since losing the weight, but still there). I s'pose a consultation can't hurt, huh?? :)

HAPPY, HAPPY THANKSGIVING, EVERYBODY!!!!!!!!!!!!!!!

LIZARD, who's really gonna try not to eat too much...:rolleyes: :)

[RathyKay]

How does crawling fit in with this? Does it help "carve" the hips? Or is it just somehow more important for brain development? I wonder if it would help you Mili? I remember reading in a fiction book (so, who knows how accurate it is), but the character reverted to crawling everywhere for six months and after that she was able to walk normally. It was in "The Poisonwood Bible" and it's covered at the very end of the story, if you care. She was a twin, and I kind of think she had a touch of cerebral palsy? Although, I don't think they called it that. If you're interested in trying it, I would recommend knee pads. (I'm 40 and I can't handle being on my knees very long.:o)

Samantha wants a smiley.:cool:

[LIZARD]

How does crawling fit in with this? Does it help "carve" the hips? Or is it just somehow more important for brain development?

Crawling is supposed to be crucial for complex developmental milestones, crossing midline, etc. I never crawled. I went from butt-scooting to walking. I can't cross midline for crap. :o


LIZARD :o

[milivica]

I was told I crawled forever, took me longer than average to walk. My daughter took forever to walk too (both of us around 15 mos?). Both of us are very clumsy though, which is now called poor gross motor skills. I'm way more of a clutz than her though.

Well, I have really been going out of my way to NOT pop my hips in and out, to stand 'squared' instead of leaning to one side or another like I always do, and I could swear they're feeling lots better.

[The Pogue]

It paves the way for a variety of problems later.

Re: crawling -
My daughter went from scooting to walking at 14 months. She has very good motor skills now.

[milivica]

Pogue, I'm 43...I don't have that much later to worry about. Like chances are, 40ish more. I'm not gonna go Criogenic and be a MiliPop and dethawed someday so if they just last the next 1/2 of my life I'll be good to go.

Although, ohhhhh my gorsh they were hurting today, well the left one. Not sure why, so that was a teeny bummer, cause I thought 'hey, I'll just be ultra aware of my stance or posture, and problem solved why didn't the doctor think of that'.

So, well, whatever. At least I have hips to hurt me, know what I mean? Could be much worse.