Chronic pain from meningitis

I was diagnosed with viral meningitis in Oct 2003, was in the hospital for 7 days heavy drugged with pain meds.  I was out of work for 4 months and then on half days for another 4 months.  The ysmptoms never went away.  Then in Dec of 2004 I got viral meningitis again. (Both times verified by lumbar puncture).  Again I was out of work and on half days.  The pain has never gone away.  I suffer from debilitating headaches, burning spine sensitivity to light, fatigue and now depression.  Over the past three years the sysptoms have gotten worse and now I can no longer work.
I am fighting for disability right now but with this condition being so rare it's hard to get people to understand what Im going through.
Does anybody know of any websites that document this condition?
Thanks for the help.