Carol
Hi Susan I live near Boston, MA. I was diagnosed with Undifferentiated Connective Tissue Disease: Lupus, Secondary Sjogren's, Fibromylagia, etc. I was sick for many years...was bounced from Specialist to Specialist. I finally went to the Lahey Clinic. My doctor is a rhuematologist and on the board of the Lupus Foundation. I'm 60 and haven't been able to work for the last ten years. Do you have Primary Sjogren's or Secondary Sjogren's? Because I have Lupus, the Sjogren's is considered to be Secondary. If you only have Sjogren's, then it's Primary. Have your doctors explained Sjogren's to you? My tear ducts have been destroyed ... I measure 0 on the schrimer's test in both eyes. If you have the dry eye, do you use artificial tears? If you need info on a product, let me know. I also suffer from severe dry mouth. Recently, my doctor had me test a new drug, Salagen. It doesn't cure anything, but dramatically helps severe dry mouth. It would get so bad that my tongue would stick to the roof of my mouth. I have also gained a ton of weight. The doctor said it's the result of severe fatigue, less activity, age, and all the medication I'm on. Have you heard of the 'Sjogren's Syndrome Foundation, Inc'? If not, here's the info: Sjogren's Syndrome Foundation 333 North Broadway Suite 2000 Jericho, NY 11753 516-933-6365 Fax 516-933-6368 It cost approx $25 year to subscribe to their quarterly newsletter. They have symposiums in various parts of the country. Doctors as well as patients attend these. (p.s. I haven't gone in years so I hope my info is still accurate) Because I don't work, I can sleep when I need to. My children are grown and I have two grandchildren. I get depressed easily because I can't travel, play extensively with my grandkids. Even socializing is tough. I found out that talking, listening, and laughing for too long can have devasting results. Hope I've been of some help. email me if you like Carol