I love what an advocate you are re. thinking of starting your own support group, etc.
I think I get pretty sick right before my period, and not your normal PMS. My skin acts up (mild eczema), I get petechiae (little pinpoint bleeds under my skin, usually no more than 20 scattered separately over my body, and I feel like crap. Currently seeing very kind endocrinologist who is starting to help me figure out. My sometimes have high urine calcium when doing a 24-hour urine test, even on restricted fluid intake, and my active Vit. D metabolite is high (the 1,25 D) which is sometimes linked to granulomatous processes. But last time, this D was back down and urine was fine. I have a hunch that if we tested it throughout the menstrual cycle, we could get a better handle on whatever pathology is going on.
Anyway - I feel you on this one.
What really set off my symptoms about 3 years ago now was an accidental inhalation of particulate silicon dioxide (tiny pieces of glass) which I had put in my home (labeled organic!!) as a "safe" insecticide. I think my body reacted to the tiny pieces in my lungs, and now here I am having symptoms every period. Apparently kidneys are one of the most vascular organs (like joints) and I think the reaction to the stuff I breathed is triggered monthly and affects my electrolytes and stuff (calcium, potassium, which can also make you feel tired and all kinds of things).
I have a friend who recently quit smoking, and it sounds like hell, but I am sorry to say I don't think it can be understated that this could help you. Especially if it is your sinuses - some people are simply allergic (like me) to cigarette smoke. Allergies develop to things we weren't previously allergic to when our immune system is haywire. RA is said to be affected by smoking about as much as heart disease. Link: http://www.webmd.com/rheumatoid-arthritis/news/20101213/smoking-raises-rheumatoid-arthritis-risk
Lastly, everyone told me there is no way this inhaled silica could have affected me. I think they are wrong for a few reasons. One, I don't think they realize how much it really was (used a non-HEPA vacuum to clean it up, and the s&*t went everywhere before I realized what a problem I had really created for myself). Two, each person's body is different. For instance, people with something called Marfan's Syndrome have more sensitivity to inhaled particles. I meet a lot of the criteria for Marfan's, but this is something no Dr. has ever volunteered for me / answered. This is something I have had to research the heck out of.
Sorry to be the bearer of bad news, but hopefully the bearer of better health.