Posted 2/23/2013 4:14 AM (GMT -8)
Oh gosh, my apologies to both of you... I've typed that many replies and never quite get to the point of posting them.
Recovery - I'm not overly familiar with them either. My understanding of EDS - at least the hypermobility type that I've been diagnosed with - is that it's a failure/partial failure of collagen synthesis, so you get stretchy ligaments, muscles, over-flexible joints... I mean, I've lost some flexibility in the last few years but I can still easily put both palms flat to the floor with no stretch at all, I used to be able to put both feet behind my head, my wrists and fingers are 'double jointed' and so on. It is apparently also well known for causing orthostatic BP issues, GI problems, fatigue and so on.
An exercise physiologist - I'm just going on what my physio has told me - but they seem to be partly physio, nutrition, blah, blah.. and look at the way the body responds to exercise. However it is they do it, the aim I think is to gradually increase strength and stamina through a whole body kind of approach.
Denise, CRPS is kind of similar in many ways - I have some meds to help manage that because of the almost indescribable pain it causes...it's probably five years now since I've slept under a blanket because blankets hurt. I do take magnesium - I actually have an intrathecal baclofen pump to help with my muscle spasms and muscle pain, but I find the magnesium helps too... I've also had IV magnesium infusions but I get pretty unwell with them - very hot, very nauseated - and we decided that side effects outweighed benefits.
Um, sleep? What's that? Seriously though... I think I was *born* with insomnia. I broke my leg when I was five, and my Mum will still tell anyone who'll listen that it was the first time I slept a whole night through. Even with the meds I'm on, my pain is rarely below a six or seven, which doesn't make for restful sleep. My 'day' and 'night' times are completely abnormal too, I am wide awake all night - more tired during the day, but not ready to sleep because intellectually I know that it's day time, even though physiologically it might feel like 3am. Another issues is that I have enormous trouble with sleep meds. I'm not familiar with Trazodone, but googling it I see it's a TCA...other meds of that class, along with benzos, make me incredibly agitated. I can take low dose ativan for nausea and that's it. The only med I've found that helped me with sleep was seroquel, but that worked a little too well and had me almost narcoleptic on even a very low dose - in just 2 days, I burnt myself 4 times while making tea/coffee, and also ended up with radial nerve paralysis after sleeping very badly on my arm and not being able to wake.
Laura