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Anonymous

You have already received advise and experience from people who have been suffering from Sjogren's far longer than I have but I wanted to share something that, for the moment at least, seems to be helping me to manage (not get rid of it) my pain. For me, the dry eyes and mouth are the least problematic, it's the constant pain, inflammation and numbness in my muscles, hands, feet and joints, the indigestion, the pain at the back of my throat and the chronic fatigue. I have always been very active and full of like of energy so another challenge is that I really miss being me. I have a secondary lung disease and couldn't exercise for months due to this, plus I've been on some high levels of Prednisone and other immune depressants (now CellCept). I was at a point where all the positive thinking I could muster just wasn't working any more and I have a very busy, stressful job that I love. I have recently started a regime that seems to be making a difference - it's not a miracle but I think it's worth a try. First, I'm eating mostly organic, I have started doing very easy yoga routines one day and twenty minutes of an easy elliptical program, followed by 10-15 minutes of stretching and breathing exercises every other day. And I start and end each day with about 10-15 min of meditation. During my day, I try to pace myself, don't sweat the small stuff (which, it turns out, doesn't really matter after all) and routinely do breathing exercises to limit my stress and calm my mind. This is all the natural stuff which is helping a lot BUT I was still having great difficulty sleeping due to the medications. I was reluctant to take a stronger sleeping aid as I am fed up with so many medications but I did so on the advise of my doctor and am really glad that I did. Bottom line is that all the good things that I have been trying could not override the fact that I was completely physically exhausted (I figured I had not slept more than 4 hours in about 8 months). Hence, while I'm still very new at trying to figure out how to manage this I wanted to at least share what seems to be helping me at the moment just in case it helps your friend. While I am not as energetic, I am able to cope - I work, I travel, I enjoy time with friends and my family. I wish your friend the best.

July 27, 2011 - 5:50am

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