Sorry it’s taken me so long to respond. Things have been kind of crazy for me lately, and I haven’t been on the site much.

So glad to find you! This has been a somewhat lonely experience for me, dealing with Sjogren’s. Right after my diagnosis I found a support forum, but didn’t stiick around it for long. I kind of felt as though the folks there, hmmm, were more identified with or invested in being “sick”, than I am ready to be – do you know what I mean? Certainly it is a sucky fact of my life now, but I don’t want it to be the cental focus of my life and my being.

Part of my “disappearance” these past few months is that right after X-Mas I ended up in the ER with pericarditis and pleurisy, due to the Sjogren’s (inflammatory process, not bacterial). My pleuritic pain is just starting to resolve. SO, I have been in pain, tired and not very motivated.

Part of my challenge is my difficulty with meds. I tried Plaquinel but stopped taking it within 3 weeks – nade me feel so lousy! – and now I wonder if I would have developed the pericarditis and pleuritis had I been on it for the past 6 months. I didn’t want to take the Prednisone for these conditions, but finally ended up doing (who knows if it helped). Had an allergic reaction to Naproxen (mouth blisters)...

So for pain I pretty much just try to stick with 800mg Ibuprofen, or take a codeine or Tramadol on occasion, when it’s really bad. I also use Merry Hempster’s hemp balm locally (it’s like Tiger Balm but stronger, great for joint or muscular pain).

Unfortunately I haven’t noticed, thus far, any reliable signal of a flare coming on. This is frustrating. I’ve just learned not to “over” exert, which is hard, as I’ve always been pretty athletic. While I do get joint-specific pain at times (left thumb, right big toe, right shoulder, wrists) mine tends to feel mostly muscular and generalized – I guess what fibromyalgia feels like? – it’s like every cell and fibre in my body is on fire, hot and screaming out “Pain!”. And I have, of course, had bouts of debilitating fatigue, always have painful dry eyes, painful dry mouth, especially in my Parotids. At one point I also had lots of neurological Sx. (tingling, numbness, and weakness and loss of balance which caused falling. Very scary).

It’s hard, adjusting to “now” vs. “before”, and trying to make myself understood when people look at me and see a young, presumably fit and healthy woman. It does get tiresome, having to explain (even to the nurses at the hospital in which I work!) what this condition is and what it’s like to live with. So, it is great to find someone else who understands, and who also seems to be going on with life.

Thanks, and look forward to hearing from you!