Woke up at about 1:00 AM last night on my side with my knees bent.  Ooh, that hurts, I thought, better roll over.  Tried to roll, but the knees weren’t having it.  Nope.  Had to manually, i.e. by arm, hand, and other muscles that really don’t like to do anything, roll onto my back then slowly unbend each leg.  It hurt like hell.  Hurt as bad as when I fell on the ice back in Michigan and blasted them to crap way back in 1998, when I still did thing like run in the snow.

What a thing to wake up to.

My knees had been feeling a bit cruddy earlier in the evening, not painful, just tight and weak.  Like my thighs weighed too much for them.  Noticed it going up and down the stairs. Felt like my knees were swollen.  They weren’t, not that I could notice.  With all this joint pain, I’ve nearly never had any actual joint swelling, which is why it’s is much more accurate to say I have arthralgia than arthritis, however, your every day coworker does not know what “arthralgia” means…and you’re looked at with suspicion for using big medical words.  So I usually just say “arthritis” now when I have to offer a functional explanation of my joint pain and dysfunction.  It is good to have the EDS-HT diagnosis for things like this now, at least in a more medical context.  It explains the algia without the inflammatory features of the itis.

One more work day then a day off.  Not totally “off” since I’m having bloodwork.  I had run across some references to anti-neuronal antibodies associated with autonomic dysfunction, specifically with GP.  These autoantibodies can come from cancer.  I’d been meaning to ask the GI doc about them but I knew that she’d probably think I was nuts for, well for what?  For looking for reason why a non-diabetic 42 year old without a history of spinal cord injury seemed to go from an accelerated GI tract to gastroparesis over just a few months?  Doesn’t sound so nutty when you spell it out, and yet I am 99% sure that had I asked her to check into this she’d have regarded me strangely…strangely in a way that compromises care. PCP was all kinds of “WTF?  You have gastroparesis?  They don’t know WHY you have gastroparesis?!  Before you take on some new thing, someone really should look into what caused this,” I did say that it could be the EDS and he ran off to his computer and printed out a long list of citations linking them (so much for that former GI doc who said there’s no association between EDS and GI stuff other than aneurysm – god she sucked).  But I’ve had EDS my whole life, if I do actually have it.  And this blisteringly symptomatic GP really is a new thing.  So I brought the question to him.  And so tomorrow AM I get bloodwork for anti-Hu and anti-Ri.

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  1. Hmmm… I see gastroparesis in all the EDS literature, so hope that is all it is (not that that makes it any more fun). Actually, I’d never even heard of it until I started learning about EDS after my Dx in Nov. ’12. Well, I just hope it will go away.

    That comment about using medical terms was so funny! They should give out honorary MDs to educated, sick people. I have arthralgia in my knees, too (and fingers, toes, etc.). It tends to come with higher humidity, but presume it’s always humid in your area. That’s by my internal barometer–I think we’re at 5% humidity right now (it’ll almost be 120 F this weekend–yes!!!). I know you’ll hate this thought, but what largely got rid of it (unless forced to go to some horrid, humid place) is strength training, which I mainly do at PT. It seems that when my muscles are stronger and allow my joints to work less (or better), the pain goes away. I can actually take the stairs in here this time around, which is more dangerous in terms of being killed than killing my knees now.
    A 🙂

    • Yes, you’re right about GP and EDS. And that may be all there is to it. I’m not someone who thinks “it’s CANCER!” every time I get sick – it should be ruled out here. It’s probably just me being autonomically f**ked for no reason that has a nice short name yet. I know some level of autonomic crap goes with EDS, but mostly IO. There is an IO/GP link though. So it could just all go back to that..

      I heard of GP, oh god, back in 2007 when the ex (ex-bf, not ex-husband) got acutely ill with what turned out to be gallstones (caused everything to back up, super high pancreatic enzymes, power puking, pain, a good time). The completely patronizing and ultimately just plain wrong GI doc who saw him in the hospital declared it “gastroparesis diabeticorum” and I recall that he had not even gotten down the hall outside the room when I let everyone know that I thought the doctor was a dick not the least of which for his need to go and mess with the Latin language like that to make himself feel more important. If you think it’s GP, say “gastroparesis, it can occur in diabetics as a form of peripheral neuropathy”, and then, you know, go on to refer your diabetic patient to a good nutritionist so they can come up with a workable meal plan. He didn’t explain any of that, didn’t recommend anything, just dropped his bastardized genitive plural ending on us and then scurried out of the room like the little white coated rodent he was. I felt nothing but contempt for him (can’t ya tell?) and wanted to send him still photos of the ex’s gallstone filled gallbladder when someone finally did an MRI on him. “Let’s send him your gallbladder!” I said in the days pre-op, then feel chagrined because my ex had no sense of humor when it came to mocking puffed up authority figures.

      And of course you are 100% right about the PT and muscles, I’m quite sure. I suspect that feeling of heaviness I was experiencing in my legs before going to bed was muscle weakness. Oh PT. I’d like to have PT that’s a little more helpful than what I got last time. They were sweet, and had an EDS protocol, but they didn’t really follow it. I mean, come on. Don’t put me on an exercise ball and say “roll your pelvis out as far as it’ll go” because it’ll go a hell of a lot further out than it SHOULD. I have wretched proprioception. I smack into crap so often I am almost always sporting one or two big bruises. I need PT that acknowledges that and works within those confines or it will always fail.

      • What a story. Oy! White coated rodent… Hahaha! Sounds like the corneal specialist, who’s such a turd. I love when they pull a Dx out of their ass. I don’t think you’re making a mountain out of a mole hill at all, btw. What’s odd is my dad’s side has weird ANS stuff and all the GI issues, but I just can’t see EDS over there (especially the skin issues or pain/degeneration, etc.). So, we are all just a mess of effed up genes I guess!

        About the PT–no one here knows anything, but I found a PT who’s not too egotistical to listen to me (and my ideas) and I’ve tweaked 75% of what we were doing. If it felt worse, I wouldn’t do it. I don’t have pain reduction, which sucks, but my joints are stable, so that’s good. You just have to find one who’s willing to admit they don’t have all the answers and will try different things (easier said than done). I was so deconditioned before (and so thin like now). At least there’s some muscle on my bones, so I feel a little better about that and no sprains for months now! I’d say try a new place if insurance will cover…
        A 🙂

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