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.