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September 25, 2008

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yanub

Maybe your body is reacting to the bits of cartilage wearing off from the EDS? I don't know what exactly causes it, but there are days where parts of me are inflamed, and days where all of me is inflamed, and days where I am not noticeably inflamed. I just figured it was all part of the EDS and don't think about the process much. I went through a lot of testing a couple years, which showed me as being borderline for lupus, but more intensive testing ruled that out. And that seems to be the story for a lot of us.

The NSAIDs? Yeah, that's why I take Darvocet instead. Because 1-tummy trouble, and 2-apparently not all that kind to collegen.

Kerrilynn Lacerte

Do you wear wrist splints? I have a lot of problems with my hands and woke up with them swollen everyday. I started wearing wrist splints and the swelling went away for the most part. Turns out that my wrists were dislocating in my sleep. I'm not saying this is your problem, but it's worth looking into. The other thing is that there could be some wear and tear type arthritis going on. From the lax joints the bones wear away at the cartilage. I also have this issue as well. As far as the NSAIDs, I can't take them at all. My stomach is ruined from many years of being on different kinds of strong NSAIDs. I take tramadal for pain. Good luck at your appt.

elizabeth

Ick! I mean how nice that it is pink and shiny but ICK! I know that when the dentist offers to show what she is doing but I don't know, isn't that why I give people money, so they DON'T show me the insides of me. This is like slasher film bizarro land, instead of running screaming from a guy who is about to show your your insides, you run TOWARD him and pay him money. Sorry, got distracted.

Sorry to hear about the ulcer and having to cut down on the meds. I hope that there is an alternative. I can't say I "understand" EDS except that with Marfans I have a muscles overelasticity issue which causes ripping and elbows and knees to go backwards (OW! - going downhill on moguls on the school ski trip and knees going backward - OW!, OW!, OW!). So I think no having options would kind of suck. Plus you have an ucler (can that heal?)

I too very, very much wish you had answers. Life with a condition which is exacting, and punishing and is there in the small moments and yet does not do a song and dance for doctors so they can go, "Ah ha! It is a ........" is tres' annoying. My empathy for you. Also glad if you are that you saw your intestine. Hey, different things make different people happy!

One Sick Mother

yanub,

NSAIDs not kind to collagen? Hmmm. Will have to look that one up. That might explain quite a lot, actually. Thanks for the headsup.

I asked her if she thought it might have been a histamine reaction that triggered the inflammation ans she said "yes". So am going to try something anti-histamine-esque the next time. For a laugh. And also because I am out of options.

But mainly for a laugh.

Kerrilynn,

Nope. I don't use wrist splints. I probably should sleep with them because I tend to sleep with wrists hyperflexed :"like a hamster" as my sister said, although I am not sure really how a hamster really holds it's "hands" when sleeping, -but you get the picture.

But my hands are OK most of the time provided I don't do anything silly. The inflammation just suddenly flares for a few days and there are noticable changes during that time. And then it goes away and I am back to my usual abnormal (as opposed to inflamed abnormal).


Elizabeth,

Thanks for stopping by!

well, I am a nerdy techie type and always have been. So I like to look inside things and see how they work. Or at least how they look. It always fascinates me.

I had hand surgery a few (10) years ago, and it was supposed to be under local anesthesia. I asked if I could watch and was told no. And I argued with them. So they knocked me out.
Final score :
Hand surgeon: 1
OSM: 0

I never did get to see the inside of my hand. :(
Yes, I freely admit I am weird. And unrepentant.

It's funny, I know nothing about Marfan's, but now I hear about muscles tearing and I am thinking EWE! I would rather have a dislocation any day of the week! I guess the grass is always browner on the other side. Or something.

I do owe an update on all this stuff, but I need to call the GI guy in about an hour, so I reckon I will do that first and then update.

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