Hi pannm.. It breaks my heart to read that... I was diagnosed in my 30's, but I am SURE I had it as young as your daughter.. I can relate to every single thing you posted.. When I was young I had episodes of not walking due to pain, the migraines, etc. I use heat for the aches and pains.. I find it is a temporary relief, but any is better than none. Your question about long flares.. Personally, they rarely have lasted months. Days, weeks, YEP... For me, and my Dr. is with me on this one, the changing of seasons brings out the absolute worst.. I am not sure how warm in the South you are.. I am N O R T H, and this time of year wrecks havoc.. I tend to just go with the pain, heat, rest, especially with the migraines.. I wish I had so much more to say, but none of the pills have ever worked for me. Not enough to take daily.. I am sorry if you covered this ( i have memory issues) has she had a brain MRI for those migraines, or a CTSCAN? Just to appease yourselves... And I wish my Mother had me speak to someone professionally for all that I was going through.. Especially when you seem to be the odd man out (so to speak).. I do weekly now, and it helps me SOOO much... If anything to just clarify I am not crazy, this is real, and it is happening.. Know what I mean? I can hear your hearbreak for your little girl.. I wish I had a magic wand... Sending lots and lots of gentle hugs to your family Please feel free to ask away!