the joy of fibromalgia (and porphyria)

so, i had been told for years that all my sleep issues were from my porphyria, and the reasons i (now) have fibromalgia are a combo of the sleep issues and the sudden stop of physical activity that happened when i was 16.
NOW they tell me that the porphyria is only (ONLY!) responsible SOMEWHAT for me wanting to sleep during the day, and the rest could be lots of things but i have to do sleep studies
which, okay, my dad needs a machine to breath at night because he has sleep apnea that badly.
but! i have been living in hell for YEARS!!!! i really don't understand how no one at all ever told me that the sleep issues could (maybe) be fixed.
so now i will be proactive for me. this is how this is currently going. i don't sleep well - it makes me hurt more - which makes it harder to sleep well - which makes me hurt even more - which makes it harder to sleep well...
it has spiraled almost out of control.
my mother (nurse practitioner that she is) knows people who take OXYCOTON for the pain from fibromalgia. i refuse to take anything more than flexaril, and that seems to ALSO be part of the problem, but what can i say, i like to use my brain.
my theory is that if we can get my sleep even partially improved, it will make me hurt less, which will improve my sleep even more, which means i hurt even less AND might be able to actually exercise (*GASP*!) which will help my sleep EVEN MORE... - see how this can be a positive spiral?

i want positive.
i have my first sleep study next wednesday. i have an appt with my general dr. about getting into disability services at OSU, because holding a pencil is torture.
then again, i do claim that i am stuck living in an Iron Maiden. or at least that is what it feels like.

but there may be positive. i want it.