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[Guest guest]

This is a description I wrote recently about how Ehlers-Danlos affects my

daily living.

Many of my joints sublux on a whim; actually, probably all of them move at

least a little. The worst is my left shoulder, which starts pulling apart

downward when I carry a 4 pound bag of cat food. When I drive, my left arm

starts

pulling apart at the shoulder. When I pull it up from my side, my shoulder is

moving out of place by the time my hand is a foot away from my hip. My right

shoulder is better by a few pounds. My hips are generally OK, except at night

when I’ve let one of them push out of socket and I’ve frozen in place -- and

I

have to wake up to endure getting it moving again. And the occasional surprise

when one of them shifts out of place while standing, or sitting, or lying

down.

My joint separation is a cumulative thing: once the shoulder goes, then the

wrist, then my fingers. What hurts most often aren’t strains, they’re

impingements, when a joint moves just enough to trap tissue -- nerves, muscle,

whatever

’s closest. Even sitting still, it can happen. While moving, it happens too

frequent to notice and can be completely distracting.

This leads to a joint “attention span†of about ten to fifteen minutes. If I

leave an arm, leg, my head in one position for any longer, something

somewhere is going to give. If I force myself to stay in position longer -- or

relax

or go to sleep -- and don’t move for longer than that, it will be painful to

start moving. I fidget, even when I’m asleep.

The time limit is compounded by nerve damage, probably caused because when

joints pull out, nerves don’t stretch, although my muscle tissue, etc. does.

My

shoulders and wrists have caused ulnar nerve damage, so that while my shoulder

pulls out driving, it starts going numb. My left ankle’s also shows nerve

damage -- not surprising, when my ankles can collapse outward to the ground if I

misstep, and my left hip is worse than the right.

There’s another limit imposed by gravity. More than about an hour of gravity

on my joints begins to cause problems. Increasing pain, drag on muscles and

joints, increasing unsteadiness, unless I give the affected joints a few minutes

to relax and not have to hold joints together. Not rest, relax.

As I’ve aged, what little help I’ve gained in joint stiffness has been

offset by the increased pain. For instance, my thumbs no longer stay out of

joint

on their own like they used to. But now? They still go out, only now it hurts

when they go out and in. Not a particularly good trade-off.

The joint laxity has affected my body physics, the way I do things. Since my

shoulders pull apart while carrying a bag of groceries, I learned to brace my

elbow on my hip bone and let my forearm carry the weight (which then

frequently pulls the wrist or fingers apart, which I have to just endure). I

also have

to guard against running into things; if I’m too close and any weight-bearing

joint slips a bit, then I’ve got a bruise from knocking the table edge, or

lost skin on the couch...

For the first 40 years of my life, I didn’t know what was wrong and I really

didn’t understand why I couldn’t seem to do anything physical well. I was a

classically trained pianist for 30 years, but never could practice enough to

eliminate wrong notes; now I recognize my little fingers don’t accept much

stress before pushing sideways into the next key.

There are also sensory problems. I have tinnitus, a sort of white noise that

I hear constantly; I have similar sorts of noise in my vision and sense of

touch. They can worsen with too much stimulus or with fatigue, until it’s hard

for me to concentrate, to process information out of the volume of noise I’m

receiving. The tinnitus, for instance, is always louder than whatever I’m

hearing; so perceptually, I’m hearing twice as much volume as I should.

Another competing time factor is sleep. I find I need a full 10-12 hours of

sleep, and I can’t seem to do more than 3 hours of it at once. I have central

apnea -- my brain is trying to suffocate me by forgetting to breathe -- so I

wake up gasping for breath once or twice a night, as well as the times a joint

problem wakes me.