Sjogren's syndrome

[merlin]

This Sjogren's thread is at least as interesting as the one where I found the $20 bibs! I don't know anyone else who has it. Cycling keeps me sane. --Well, sanity is a relative concept!

I was Dx'd about 5 years ago, but know I've had it for 20 years or longer. I searched for many years to find a Dx for the aches, dry eyes, photophobia and fatigue, which made me feel like a crazy person. At first, I thought that becoming a prune was due simply to menopause. Ahh no!

I take plaquenil for the aches and it helps, although the possible side effect is eye damage. Restasis did not work for me. I wear sunglasses outside, but am usually OK indoors. One of my least favorite aspects is the thirst which interferes with sleep. I can ride 20-30 miles, feel OK, then just need a day of rest. Fish oil is great stuff for all lubrication!

I have a new rheumatologist--old one left the practice. The new one does not seem to "get it," but he continues to write the plaquenil prescription. And he tests me for Non-hodgkins lymphoma, for which Sjogren's is a risk factor. My teeth are all cracking. Lots of dental work on the horizon. I knew about the increased risk of cavities, but not about the cracking, as related to Sjogren's. Now that all makes sense.
I could rant about the rheumatologist, but I won't. :-s The whole thing is not fun, but mostly I can manage it. Acupuncture helps with pain and general wellness.

Geohiker, et al. you have helped enormously! Badger, best wishes to you and your mom.