I encourage all of you to get the Sjogrens book. https://www.amazon.com/Sjogrens-Book-Daniel-J-Wallace/dp/0199737223
Hi /u/LehighLuke, dunno if you are still checking in on this post or not. Hope your situation has improved. I am a psychologist who has recently found out that a close friend has Sjogrens and in learning more about it, I want to make a strong recommendation that you suggest to your wife the possibility of going to therapy. People, especially doctors with no psychological training, drastically underestimate the psychological impact of these sorts of earth-shattering developments. If she has had anxiety and depression chronically as well, this can (and likely is from your description) a recipe for disaster. The gold standard of treating psychological depression has been and always will be a combination of pharmacological treatment and psychotherapy. Current day anti-depressants are a practical miracle. As a psychologist and as someone who takes an SSRI everyday I can say that it does wonderful things for alleviating some of these symptoms and feelings without otherwise impacting your lifestyle or psychology in any detectable way. Coping with a chronic illness is difficult. It is more difficult to express what it's like to others, and you, unfortunately can't know or understand lots of that. Therapists have training and an outside look; again, I highly recommend this, even if once a month or less.
The next thing, I have to say, is on you. You seem like a gung-ho guy and obviously you love our wife. I can't count how many hours I have spent online researching SS. Obviously, I am a researcher, I have access to resources most people don't have and I can read primary research instead of having someone to tell me about it in simplified terms. That being said, let me recommend The Sjogren's Book, which is put out by the Sjogren's Syndrome Foundation and I can say from reading a good portion of it that it is very thorough and accurate. It is as much for friends and family of patients as it is for patients. Get it. The hallmark of chronic illness in the psychological realm is fear and uncertainty. By educating yourself, you become the front line against this fear by being able to dispel a lack of knowledge with knowledge. Fear about prognosis, pregnancy, complications, and even psychological stressors; the more you can support her this way the better. For me it's about all I can do.
Given my knowledge and limited medical expertise, I also recommended my SS friend start taking a vitamin B supplement to help against fatigue and she has said it has helped. It will take time to kick in (a common misconception is that vitamins have immediate affects; they don't, it is cumulative), probably 2 weeks or so for noticeable benefits. When you are deciding which supplement to get, look for one that doesn't "overload" the vitamins by giving you like 1300% you daily dose. Try to get one that covers many different B vitamins but that doesn't exceed 100% by much on more than one of them. The added metabolic load of excess vitamins could potentially actually make her more fatigued.
Best of luck to you friend. I hope this has helped.