Book Larnin'

Since I got sick, I have been referred three times to Physical Therapy. I have never graduated from PT. I never got the coveted graduation t-shirt. But I spent quite a bit of time over there. Nice people.

The first referral was for hands and back. Then it turned out that my insurance will only cover one body part at a time. I asked if "hands" was considered one body part or two?  It was one. So we started on hand therapy.  I was only a few weeks into therapy when I did something to my neck. So the neck became a priority and the hand therapy was were dropped. Fine.

THEN, about halfway through the neck therapy, my lower back went to pieces and the prescription was re-written. Again. No problem. We switched from neck to back.

Now the neck exercises had posed no problem for me. I have been pushing and pulling on little weights and pulleys and various thingys in standing, sitting and supine positions. The only real problem I ever had was if they "worked on me" upright. I learned the hard way that I needed to be flat for a neck massage or my pain went into the stratosphere.

When we started on "fixing" (ha!) my lower back, most of the exercises were performed laying on my back. That's when I started having seizures during PT. They and I tried a lot of stuff: eating / no eating beforehand, elevating my head somewhat (which definitely helped but didn't eliminate the problem), drinking water, no water.  We tried everything. But I could not show up for PT on my lower back and be sure I WOULDN'T have a seizure. In fact, I had them more than 50% of the time. It was starting to get silly, and I was politely asked to discontinue physical therapy until the seizure problem was fixed.  I was freaking out the therapists and the other patients.  Not to mention myself (but nobody asked me how I felt).

That was about 18 months ago. The problem isn't fixed, so I have had no physical therapy in that time.  However, I still have Ehlers-Danlos Syndrome. I still have problems with my neck, back and hands. None of that has gone away. Just the help was removed. I haven't really sweated it for now. I have bigger fish to fry. But physical conditioning -my lack of it- has been at the back of my mind.

Recently, when on-line at the pharmacy to pick up the pills for my freaky test, I picked up a book entitled "Overcoming Neck and Back Pain by Lisa Morrone, PT.  I flicked through it and it looked kind of interesting. A lot dealt with posture and sleeping position and very practical-looking tips. So I bought it for myself as a little Christmas gift.

I am not a big one for self-help books and I am really down on self-treatment without professional guidance. However, what I liked about this book was trhat it explained a lot that made sense to me: Like why sleeping on your stomach is bad (and I do it all the time) and how to correct it.

I don't want to turn this post into an advert for a book. I definitively think -especially for EDS-ers or people with any disabilities, actual physical therapy is the way to go. But there may be some people out there, who -like me- cannot go to PT right now, and a bit of book larning from this or a similar book  might benefit them too.

I haven't really started to implement any of the stuff from the book yet, BTW. I will post in a few weeks and let you know how I get on.

Comments

[yanub]

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]

Yanub,

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.

Hmmmm...

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]

Lisa,

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.

[Carleen]

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]

Carleen

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.