I've spent the past year and a half going downhill so fast I'm starting to feel like I must be a champion soap box racer.

I've got to wonder, is there a point where you stop falling apart so fast? I mean, this is just ridiculous!

~Blaze

For what it's worth, from what I've seen in other people with EDS, there is no clear linear progression. It seems more like a rollercoaster ride, with constant surprises, but also phases of relative calm (regular (very careful) PT to strengthen core muscles seems to help with this, at least for those who find a good PT). And yet, while my mom was doing pretty well these past years, she still had a bout of sciatica, which resolved itself after a couple weeks (after she'd been told it was a herniated disk and she needed surgery ).

But there doesn't seem to be a unifying pattern of progression, just like every EDS'er has their own unique combination of symptoms, so it's really hard to say what may or may not happen. And yeah, if you ask me that is one of the suckier aspects of it right there.

Same with Marfan's...

They only things they can track is my aortic-dialation and eye-pressure...

If you find that point, mark it clearly on a map and send it to me. Seriously.

I know it's all individualized, but my own massive worsening and that of others on here more or less simultaneously (okay, concurrently is perhaps a better word, I'm back to sleeping in shifts to manage pain and life, sorry) has been excruciatingly disheartening for me.

If I had anything to plan on or go by, it might stop the terror in my head. Of course, if I had anything to plan on or go by in the rest of my life, those terrors might not have been so strong to begin with.

What a ******** year, seriously. I'm done with it already. And it ends, of course, with a wedding anniversary that I can't really celebrate unless something dramatic changes (and I know that it probably won't).

And now I'm crying, and now I'm going back to bed to sleep away the time between now and a visit to my psych. There's gotta be something better than the dozens of things I've tried to at least shorten these massive weeping spells...

oh, P.S., I guess now they're doing corneal topography to track the shape changes in my corneas (early keratoconus, new dx of the week), and I do get DEXA scans to tell me how much bone density I'm losing (over three standard deviations the wrong way at age 27, what a start), and now they've begun imaging my aorta from top to bottom for measurements over the years. So like you, Drake, I have a couple of uncontestable, quantifiable benchmarks. But the rest of it flies out the window faster than I can name it, much less measure it.

I know the feeling Thisgrey... My shoulder-blades and even my bum ... actually my hip, but you get the idea ... is now doing the same darned thing as my wrists... It's like when the doc dx'ed me my whole body suddenly woke up to the fact that it's screwed up.

Two MVA's in one year doesn't help much either (nope, not my fault)

Overall, no I don't think it stops. However, & this is a big however, I do think there are pauses every now & again as well as points where it gets a bit better every now & again. 6 years ago I had about 2 weeks where I could not walk at all, not 1 step. Now I get a day or 2 like that once in a while. Of course now I seem to dislocate my left elbow a few time a week & can not get it back in by myself. My overall pain is worse than it was 6 years ago too. EDS sucks & EDS does keep breaking your body down 1 bit at a time. I do think PT can slow things down, with a good PT who is patient. I do think once you've figured out what's going on & figure out what you need to help you (braces, canes, wheelchairs, full body cast to prevent any movement at all, lol) that it will stop going down hill quite so fast.

LOL that is so true for me.

Jill and Drake: The same thing happened to me...and my geneticist said that's very common...to rapidly decline the year you get diagnosed because you recognize all that's wrong and are now aware of it. And usually it's rapid decline that leads to a diagnosis in most cases.

There are peaks and valleys but overall it doesn't stop.

Thanks for sharing that Steph

I don't have much more to add that hasn't already been said. I, too, have seemed to decline rather rapidly, but as Reine mentioned, it could be that I am not realizing the things that my body is doing that it shouldn't be doing. I am in more pain that I used to be, can barely walk (but still try to as much as I can). It's a rollercoaster ride... one day I may be feeling fairly ok, not pain free, but ok enough to do something. Other days just getting up out of bed seems to take forever. Huges and spoons, everyone. Hang in there.

if I may give a different opinion on the matter?

Think about it this way... how bad does your body have to get in order to get a diagnosis? The very reason you get a diagnosis is because there are so many things starting to go wrong, that they finally send you to a specialist and voila... diagnosis.

Now you have a diagnosis... just saying the words does not stop your body from that deterioration that sent you to get the diagnosis in the first place. In fact, your body is now snowballing down, one joint problem causes another, which causes another, the pain from them causes another thing, causing x, y, and z etc.

The process of getting stabilized is not a fast nor an easy one. You have to make your body do a 180 from the path its on. It will always seem like its getting worse before it gets better. It takes years to get to the point where you were simply right before you were diagnosed sometimes. My geneticist who diagnosed me at hopkins said that if one year after i was diagnosed that i was *no worse* than i was at that very moment, he'd be ecstatic.

It may not be a very encouraging thought... but know that you aren't alone in this. Its been 3 1/2 years since i was diagnosed and I still have those dips. People who have had it their entire lives have those dips. You have to make your goals... find out what you want your normal to be. Don't make those goals unrealistic, or unmeasurable.

I hope that helps a bit and adds a different perspective *hugs*

I know what you mean, this birthday will mark over half my life spent in pain and popping without anyone acknowledging that it was happening, Halloween will mark one year since my diagnosis. This one year since my diagnosis has brought hip surgery with plans for at least one more, forearm crutches, weekly physical and occupational therapy, splints and braces, and more pain then you can shake a stick at. I guess all we can hope for is good people and things in our lives to make up for all that we must suffer through.

It's weird -- I'm bendy, my ribs move around, joints pop pop, my muscles are killing me, I'm so tired I might have to quit working and go on disability, and now I have that POTS stuff.

But I've never dislocated anything except my jaw a long time ago.

It's only been since June of last year that I had any problems whatsoever.

Weird weird weird.

Count your self luck Jilly

I have been dislocating my knees since the age of 16... Everytime a specialist would tell me "We'll have to operate...no doubt about it" but then, when I have recovered (and the swelling has gone down...so it's most likely the fragile appearance of my legs that dissuades him), they would change their minds.

EDS sure is weird and unpredictable...

but I'm one of the lucky ones... after years and years of getting worse and worse which in the end lead to a dx... then years of having 'no life'...

I have been getting better/ am much better at dealing with it and in the last couple of years once again can do things I at some point thought "never again will I be able to"!!!!

with boards/forums you must also always keep in mind that most peops when they 'get better', are able to deal with this/able to once again have some 'real live life'-
they tend to not visit/post as much and in the end leave boards...
there seem to be fairly few 'loonies like me' that stick around ...

so you often DONT get the "whole spectrum" of what happens to EDSers on boards/forums..
but mainly the experiences of peops in the "arrrrgggghhhh phase" and the most severely affected...

though as for "all probs totally stopping"- must admit I've never come across someone that went back totally to their 'former self'...

BUT there IS HOPE and a good chance of big, big improvement!!!!!

xxg