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December 30, 2008


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Ugh. PT. I have come to the conclusion that I can either work or I can do PT, but I can't do both, and doing PT becomes moot once there is no job. And unless there is a very specific goal to be met with the PT and the entire problem of EDS taken into account, it is pointless...a neverending program of exhausting exercises. Weeks of doing the same damned exercises and programs, and for what? To have no change in strength, no improvement in stability, no better grace, maybe some new problem from overuse? No thanks. I'll just slap on a splint, take a pill and go on.

I guess we could have a lively EDS debate on "PT: Hope or Harrassment?" but instead, tell me, what did you get out of it that leads you to think it is the way to go for EDS? The author of the book you cite seems like a decent therapist who might be able to address some of the underlying problems inherent in the usual approach to PT, but right now, all a doctor has to do to turn me into a snarling beast is mention those two letters.

One Sick Mother


I think it depends on the person. And the therapist. I did well with the neck stuff. Although having just said that: I did notice a pattern that when my neck felt good, my SI joint hurt like crazy, and when my SI joint felt good, my neck was a mess.

...And since I stopped PT, I have only had one really nasty back pain incident. OK: It lasted two months. But that is still good for me.


Maybe you are right...

Lisa Moon

Interesting post as usual! Well, I don't have EDS (to the best of my knowledge and it sounds like something I'd have noticed from what I read) but I was sent to physio after my workplace injury to left Achilles tendon.

You know how PTs LOVE to ice you to reduce inflammation? Guess what the worst thing EVER for the CRPS I've been diagnosed with? Yep, you guessed it! On their instructions and twice daily at PT sessions, I was icing my ankle for hours per day, for around 6 months! With what I know now, I feel quite certain that this served to cement the CRPS and actually advanced it.

SO, I too cringe and rail when I hear about PT! I felt mine to be competent and informed, he'd has experience with similar injuries, which seemed reassuring... but no one, not the 4 PTs on staff nor the myriad of docs I saw noticed what I was later told were 'textbook symptoms' of early CRPS.

Let's just say when I enter the pain clinic in just over a week (yay!) I'll be VERY cautious and leery when/if PT is recommended!

Think I'll see if my library has that book; I sleep on my stomach sometimes, too, and realise it's not ideal...

One Sick Mother


Oooohh.... ouch ouch ouch ouch!

I was cringing just reading that comment!

It just goes to show how important is the correct diagnosis. I can imagine you have a lot of anger and regret that you went so long and went through so much before it was finally figured out.

I laud you for not being "bitter and twisted" (as one of my best friends would say), but it must still hurt.

On the book thing. yes there was a lot there about sleeping positions, posture and alignment. I know I have a tendency to favor my left side (because I get weak on the right) and I need to stop doing that as much as possible, or I will hurt myself.


Were you ever prescribed anything for the seizures so that they could be controlled and then the PT continued?

My experience has been that, true to what my neurologist said, it can take time to get just the right anti-seizure medication in just the right dose to get the seizures under control. I'm still looking for the right one for me and although I do still have breakthrough seizures, they are far more controlled now than they have been in the past.

One Sick Mother


Yep. I was prescribed lots of things. Most meds made the seizures worse, or had other, nastier side effects, such as hyponatremnia (sp?) or sucidality. It was eventually determined that OSM and seizure medications were not a safe combination, and I was better off without.

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