Jenny ([info]jenny_evergreen) wrote,
@ 2007-08-15 14:15:00
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Current mood: indescribable
Entry tags:amazing medical specimen, beighton, bjhs, my health

So, about that joint thing...
I've been researching, and I keep getting the urge to laugh hysterically.
The two major criteria for determining whether one has BJHS (called by several other names as well) are:
1. A Beighton score of 4/9 or higher. (I score 9/9, and, as far as I can recall, always have.)

2. Athralgia (joint pain) in 4 or more joints for 3 or more months. (This is one of those moments where I laugh hysterically. Try two DECADES.)

Um. Yeah. Also at the (very informative and helpful) site I linked to above, it ACTUALLY TELLS PEOPLE LIKE ME TO FIDGET!!!! (Those of you who don't know me in person are not aware that I DO fidget, constantly. I can't be still for extended periods. This has been a problem occasionally in situations like at the dentist (which the site actually talks about!)...seriously, I'm going through the whole OMGWTHHOWWASINOTTOLDTHISAMILLIONYEARSAGO thing. This is a tad long, so I'll cut, but keep reading, 'cause this is pretty huge for me.

So, I look at the Wikipedia page on the subject, which has a list of other conditions people with HS may develop thanks to their lax connective tissues.
Of the 21 conditions listed, I have (debatably where noted) these:

Gastroesophageal Reflux Disease (GERD)

Irritable Bowel Syndrome (IBS) (I think my GERD may have resulted in this diagnosis, but, as time goes on, I become less sure.)

Varicose Veins (Not bad, though.)

Flat feet, pronated feet, plantar fasciitis or sesamoiditis and unsupportive shoes (My feet are mostly flat, and I have had plantar fasciitis undeniably for years.)

Joint instability causing frequent sprains, tendonitis, or bursitis when doing activities that would not affect the normal individual. (Define frequent. Yes, my joints have always injured more easily than others.)

Early-onset osteoarthritis (in my back)

There is evidence linking hypermobility syndrome to anxiety and depression. (Although this, imo, is pretty true of all chronic pain conditions.)

Knee pain (YES.)

Back pain, prolapsed discs or spondylolisthesis (Just back pain, though I've got it under quite good control generally.)

Worsening of symptoms in cold weather (and wet weather...one of the big negatives about moving to Canada.)

Joints that make clicking noises (Hee. Heeheehee. OMGYES.)

Headaches (Have you read my journal?)

Susceptibility to whiplash (Sprained neck when I got hit my a car while walking kind of screws up this one. Chicken/egg.)

Temperomandibular Joint Syndrome also known as TMJ (Most forehead slapping moment of my life: I ACTUALLY SAID, "You mean that's not supposed to hurt?")

Increased nerve compression disorders (i.e. carpal tunnel syndrome) (*shrug* Unquantified, but I certainly have hand problems from all my typing.)

That's fifteen, for those of you who don't feel like counting, with maybe two or three being debatable.

Amusing.

I'll spare you more, as the kid is finally waking up. (WOO! TWO AND A HALF HOURS! YES!)

My initial reaction was nonplussed because there's no cure, but I have already gotten some ideas about things I can do to help myself, which is awesome. And LONG FUCKING PAST DUE. *smacks various doctors retroactively*

Okay, back to taking care of the monkey.



(19 comments) - (Post a new comment)


[info]alfabet126
2007-08-15 07:58 pm UTC (link)
Hmmmm...I got four points on that thing - both knees and both pinkies; if I try hard enough I can get the right thumb point as well. I have too much belly in the way to reach the floor; I think I used to could do that, though, about 50 pounds ago. :P

Let's see...
You know already that I have bad gastro-intestinal issues.

Could sesamoiditis be the feeling I sometimes get that feels like I have glass grinding into the ball of my foot at the base of my big toe?

I'm a big old sprain waiting to happen. I had at least one pretty serious sprain every year up until I joined band and managed to avoid PE.

Arthritis - possibly; my thumbs and hands ache quite a lot.

Knee pain? Oh, yes, most definitely.

Back pain? Uh-huh.

Cold and wet weather definitely makes me more achy.

Just call me rice krispy knees. :P

Headaches? Oh, my goodness. Not as bad as they used to be, but yeah, I get "sick headaches" which I think are mild migraines.

I've had slight whiplash twice and my neck hurts most all the time. It also has some rice krispies inside.

TMJ - actually diagnosed by my dentist when I was quite young. The other night the right side got stuck and I had to work my jaw for several minutes before I got it to pop back into place properly.

I got an awful sore shoulder from knitting once when I was pregnant. It kept me awake for several days because I couldn't stand any external pressure on it.

Not that I'm trying to steal your diagnosis, or anything, but it's fun to compare ailments. :P








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[info]jenny_evergreen
2007-08-15 09:44 pm UTC (link)
Take my diagnosis, PLEASE! *badum-dum* :P

I didn't look sesamoiditis up, so I dunno.

*grin* Sounds like you might have it; I hesitate to self-diagnose as a rule (there are several things I fit "if you have X symptoms, you have X", but this is the one time I've come across something utterly, unequivocally obvious), but it sounds like you may have (or maybe have had) it to me.
It's very common in teenage girls, and can recur during pregnancy, but it's supposed to clear up otherwise. Except, of course, when it doesn't. :P

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[info]alfabet126
2007-08-16 06:25 pm UTC (link)
If I could take the pain away along with the diagnosis, I certainly would.

Except, of course, when it doesn't. :P
Yeah, isn't that the bitch of it all?

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[info]miintikwa
2007-08-15 08:10 pm UTC (link)
O.o

Wow.

I don't have hypermobility, I don't think, but this is insane, the number of other issues I share with you. I wonder if it's similar to fibro.

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[info]jenny_evergreen
2007-08-15 09:47 pm UTC (link)
I think in the Wiki they said it's sometimes linked to fibro. My guess is that some people with BJHS have been diagnosed with fibro incorrectly. (I know that I fit several fibro symptoms; I bet I could've gotten the diagnosis if I went looking.)

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[info]gryphonwing
2007-08-16 12:48 am UTC (link)
I used to be afraid I had fibro, but too many of my symptoms just didn't fit.

I *was* diagnosed with hypermobility, but the person who told me I had it didn't tell me what it meant, or that there was a real name for it. He just had me bend all my joints and told me I had loose ligaments.

That makes me so mad. I mean, my mother has it too... it's heritable, autosomal dominant, easy to track. She's 50 and just had to have knee surgery to fix one of her two crumbling knees, has very early osteoarthritis in various joints.

I've had hand and wrist pain forever, back pain for years, cracking knees and joint pain, TMD and jaw pain, one toe that is permanently ow, one hip that likes to wander around in its socket... some days every damn joint hurts.

I should go through the site and list my related medical stuff as well. Could be instructive.

The whole thing is that in HS, I couldn't write for very long without horrible pain. My hands hurt nearly all the time. I thought I had RA, but didn't. That's when I got diagnosed. But the doctor never said much of anything about what to expect... now that I don't write in longhand all day every day, the hands don't bother me much. I bought a special pen for essay tests that lets me do an hour of writing without actually crying from the pain, yay!

The worst is that I always just thought I was making it up somehow. I didn't know what I was dealing with was real.

Oh, and I'm an 8/9. I'd be 9 except that I'm long-legged and short-waisted, so no palms on the floor, even when I was young and skinny. I can bend *way* more than I should be able to in yoga, though.

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[info]jenny_evergreen
2007-08-16 01:51 am UTC (link)
Yeah. It never felt quite right. *nod*

Same here, and this was just a few years ago, for goodness sake. He used the fancy Latin version of "loose ligaments", and the sum total of his advice was "don't move too much". *rolls eyes*

Heh. Considering my general condition, I should have nowhere near the flexibility I do. And, yeah, I can totally (without hardly trying; all it does is stretch my hamstrings a bit) do the touching the floor bit.

Thanks...you are the reason I know about this!

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[info]popfiend
2007-08-15 08:11 pm UTC (link)
You fidget too?

Kewl.

Weirdly alike yet different peas in a pod.

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[info]jenny_evergreen
2007-08-15 09:48 pm UTC (link)
Indeed. I think you have more nervous energy than I do. :)

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[info]kateri_kachina
2007-08-16 03:13 am UTC (link)
Ugh on the no cure thing, but I'm glad there are some ideas on things you can do to keep the symptoms minimal (relatively speaking). :(

Short of blown-out knees, herniated discs, chronic migraines, and carpal tunnel, I don't share any other ailments with you...so I'm going to consider myself lucky and call it a day.

Oh, and give you {{{HUGS}}}

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[info]jenny_evergreen
2007-08-16 12:18 pm UTC (link)
Heh. *hugs*

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Hurt much?
[info]tom_vroom
2007-08-16 04:17 am UTC (link)
Holy hell.

I sorta knew about all of these sypmtoms, but MAN. Honey, I have to give you credit. You are one FUBAR'ed person (physically) but you don't hold a candle to how I would complain and hate my life if I had to deal with even 20% of that stuff.

Knowledge is power, and I hope you're able to deal with some of these things on a new level.

Love you,

Me :)

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Re: Hurt much?
[info]jenny_evergreen
2007-08-16 12:18 pm UTC (link)
*wry smile* Love you.

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[info]dandelion_diva
2007-08-16 09:45 am UTC (link)
Well. Yay for progress! And who knows? Maybe one day soon there will be a cure. Also yay for having ideas about how to improve things.

Love you very much.

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[info]jenny_evergreen
2007-08-16 12:20 pm UTC (link)
One can hope. :) Love you.

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[info]morgandawn
2007-08-25 05:52 am UTC (link)
heya, I also have EDS Type 3 and yes, I too laughed at the fidgeting commnet. BTW, there is an eds alert newsletter here at: http://edsalert.greatestjournal.com/ and you can sign up here
http://syndicated.livejournal.com/edsalert_gj/

I have a lot of GI issues that puzzled my mds - I find you really have to be your own medical advocate.

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[info]jenny_evergreen
2007-08-25 01:14 pm UTC (link)
Thanks for the links...I don't think I have EDS, just BJHS, because I don't have any of the skin symptoms.
*nod* Oh, yes.

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[info]morgandawn
2007-08-25 03:56 pm UTC (link)
nods. there is a lot of overlap in how the conditions manifest and of course the treatments are very much the same. hope the links help.

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[info]jenny_evergreen
2007-08-26 08:02 pm UTC (link)
I'm sure they will; thanks! :)

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