Good Morning EDS!

Well. The past couple of weeks have been full of work and travel and more work.  There have been places to go and people to see.  All of this is well and good.  Unfortunately, one of the side-effects of EDS is that the faster and more frequently you move, the harder it is for your muscles and joints to keep up.  Add climate change and spontaneity to the mix, and you are basically screwed.  You become a shoddy assemblage of slow, stiff, and oh so carefully plotted out movements.  And that just barely gets you through the basics (e.g. work and self-care tasks).  Anything unnecessary/extracurricular is impossible.  You do your best to cover it up, to trudge on at your best, because you have no other choice.

Mornings are the worst.  I have never been a morning person. Never. Even when I was a kid, I detested being forced to flee the coziness of my little bed.  This, I am pretty sure, had almost nothing to do with EDS.  When I was small, the signs of hypermobility EDS were certainly present, but they rarely gave me much trouble.  On the contrary, I exploited them to my benefit (e.g. by winning gymnastics competitions). But with time (that is, at the ripe old age of sixteen) the signs and symptoms of muscle and joint wear, tear, and fatigue began to appear, along with a touch of nerve damage from a tethered spinal cord.  For months at a time, depending on travel and physical activity the previous day, every single muscle in my entire body would ache first thing in the morning.  The pain and stiffness were so bad that rolling over and getting out of bed went from being a task that took two seconds to a task that took ten minutes.  Slowly, as the morning progressed most of my muscles loosened and the pain lessened. By 10 a.m. the morning’s unpleasantness would be mostly forgotten.  I chalked it up to school stress, perhaps even a touch of fibromyalgia (said the first Esteemed Medical Professional), and moved on.  Now of course I know differently.  And what really sucks, and I mean really sucks, is that with time, as predicted, this morning absurdity has only gotten worse.  It’s no longer some weeks, some months, and not others. It’s pretty much all the time.  I wake up, sometimes without help from the alarm. My brain is ready and eager to face the day. But my body is utterly uncooperative.  Utterly.  Absolutely every single inch of soft tissue, every muscle, every tendon, every ligament aches.  My problem areas–my back, neck, neck, leg, and hips–are especially sore and stiff.  And no matter how much mental will I summon to stand, I feel as though I am attached to the sheets by a long series of suction-cups.  Too stiff, too physically tired to move.  But I have to. So I do. Slowly. Slowly. Slowly. If you saw it, you would laugh.  A young woman going through her morning routine as though she were eighty.  You might think, “She must be play-acting or making a joke.”  Yes. That’s it. A joke. On me. Ha ha.

And the best news? There few solutions.  The best remedy is painful and  unpleasant: movement.  With activity, the aches, pains, and stiffness do begin to taper off. On a really good day, they even go away.  Also, and most fortunately, there is coffee:

I have tried many holistic and traditional (e.g. recommended by Esteemed Medical Professionals) remedies for the crap that is an EDS morning. Of all of them, at least for me, the only thing that really has proved beneficial is a cup (or two) of coffee.  It is my drug anti-EDS, anti-corporeal fatigue drug/remedy of choice. I can’t imagine coping without it.

One thought on “Good Morning EDS!

  1. Sorry for my bad english..

    I found your blog by typing ” EDS pain morning ” in Google.. I have ”swan neck deformity” in my fingers like this picture

    and I am more hypermobile than the average, but not too much.. (I would score 4 or 5 in the Beighton scale).

    I am in pain when I wake up in the morning. Of course it´s much much lesser than yours. And almost goes away after some minutes. But my mom, often cannot walk properly in the morning. She’s 48 though, but she is like that for almost ten years. She believes that she is just tired but obviously this isn’t the case, I think.

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