Watch this movie and check out this website. If you're really serious about getting healthy for good, you have to change your lifestyle. I'm not saying do exactly what this guy did, but it will open your eyes to how our diet affects our health. Enjoy!

http://www.rebootwithjoe.com/

PS I also recommend watching Forks Over Knives. More compelling info about food and health.

Hey Debs,
SS is an Auto Immune Disease which means the body is attacking its own healthy tissue...I don't know that a connective tissue disorder can be reversed.
As for the symptoms, I know a lot about symptom management.

Can diet help? Well eating healthy is always going to benefit you. Currently I have eliminated all processed foods from my diet and I do 'juice' lots of vegetables and fruit 'juicing' every day. I use a lot of spinach, kale, beets, sweet potato, collard greens, carrots (I like to get lots of dark green veggies and then a colorful variety) and I usually add a little fruit to hide the taste b/c I don't like veggies at all! So apple, banana,blue berries...and since my GI tract is recovering from a year long infection and is very sensitive to anything slightly acidic, and I am lactose intolerant, I usually need to add a splash of coconut milk to coat my stomach.

OK, too much info about what I eat...the point is, over all I feel like a healthier person. I can never see myself in a fast food joint again...I wouldn't even consider that a treat. Has it helped with my Dry Eye and Dry Mouth, not really.

So, I continue eating a healthy diet because it is good for me. And I continue with Symptom Management, because that too is good for me.

I keep my spirits up and hope for a cure or remission because that too is good for me :)

Best, LuLu

I would totally agree with what Kevsgirl and Lulu wrote. Diet is huge. I would also agree with watching all the movies on healthy eating (there are a lot of them on Netflix). An anti-inflammatory diet does calm things down a bit. I would also suggest not eating wheat in any form, and getting off all grains if you can manage it. Even if you are not celiac, getting off the grains will help you a lot. They are a huge source of inflammation.

What is promising to help me the most is discovering that I am hypothyroid, and have been for a long time. I was planning to post about the improvements I got (including increased saliva, better sleep, and less pain and fatigue) after taking an iodine supplement. This may not seem related, but I think it might be. The iodine seemed to "stop working"after a couple of weeks, so I went to the doctor for thyroid tests. I won't bore you with the details, it's ongoing, but my point is: I wonder how many of us are suffering from undiagnosed thyroid problems? I'm not saying it's the cause, but if one's thyroid is off, it makes everything much worse. I was amazed to find that by treating the thyroid, everything got "wetter". Read up on thyroid - there's a website called "Stop the thyroid madness" - and see if any of it applies to you. It's too early in this process for me to say this is definitive, but it's the first thing that has dramatically improved the dry mouth and pain/fatigue.

Deb, I don't know the answer about Sjogrens and remission... but I had severe dry eye when I had Graves (and Graves Eye Disease - hyper (not hypo) thyroid)... and it went away when I had a thyroidectomy. I no longer needed to use drops and that was four years ago. Now I've got the dry eye back with the Sjogrens... but at least for a few years I could say I *used* to have dry eye...

I have tried all kinds of dietary changes for my RA and none of it worked, sadly. Some people find improvement with diet and others don't. I would happily give up grains, gluten, etc for the rest of my life if it made any difference in my symptoms.

But I like what LuLu said about hope being good for her. So let's hope remission is possible...

xTina

xTina, if you don't mind me asking, what kind of dietary changes did you make, and how long did you try each one? I have a hard time believing that a clean diet would have not helped at all. It may not have cured you, but if you were truly eating clean and getting all the nutrients you needed, and avoiding all the foods you don't, then you should have noticed at least some level of improvement. But I do know that sometimes it takes a little while for some people to really notice the improvement. It takes some people's systems longer to detox from all the crap they've been eating when they start to eat clean, so it can take up to 3-6 months in some cases to notice improvement. Personally, I noticed improvement almost immediately, but I've heard others say it took a little longer.

To all of the many replies, thank you all!
As many of you know they say "once you have a diagnosed autoimmune disease; you are likely to get another one. I was diagnosed with Hyperthyroid and then Graves Disease about 13 years ago, and have done well managing that (without going into that too much) did not do RAI treatment. As for SS, I've symptoms for 13 months, but dry eyes alone for longer! I have tried many natural approaches and am still trialing new things and I don't plan on stopping. I hope to figure this out and get comfortable again and be able to say "that this is what I use to have to go thru".
I will say as I posted before I read the book that I had heard about "Uncovering the Untouchable Diseases" that was my first trial.
I must say this book suggests that all autoimmune diseases are really one and the suggestion was control by diet. I was willing; I did the Anti Candida Diet and I felt great... for one whole month, I was very religious about sticking to it. No sugar, no yeast, no dairy. Until, Halloween 2012 and I ATE candy.
I had dry mouth again that very night. I have tried and am still trying to stick to eating unprocessed, healthy, no sugar no wheat but have a little bit of dairy. there have been Birthdays and weddings and I've not been able to stick to my own way of eating so, I have had dry, dry eyes, lips, mouth and throat; the worst at night, some joint pain that comes and goes like I'm a crazy person.
I do believe what we consume is a huge part, also stress.
I have had dry eyes long enough that I have some damage.
So, your not alone if you wake throughout the night and reach for the eye drops, and sip water to wet your paper dry mouth:)
I try to stay positive for a cure or remission and tell myself it could be worse. I think we may learn more from each other than the docs could share or would have time to share with us. So, thank you again. Remember we may not all have the same triggers or treatments that affect us each the same but it's still great to share and therefore spread hope:)

Hi, my understanding is sjs never "goes into remission" as with any other autoimmune disease, but folks can feel as though they are in remission if they are able to manage their symptoms effectively.

Unfortunately, I have yet to experience any type of remission-like state, but I belong to another forum for sjs where some folks feel as though they are in remission. They have changed their diets, started exercising, taking supplements recommended to them by their MDs and even started some prescription meds and feel so much better.

I started plaquenil almost 6 months ago now and I have more "better" days than I used to, but I am certainly not ready to say that I feel as though I am in a state of remission. I have read, for some folks, plaquenil is a god send. I am not ready to say it is a god send for me yet, but I can certainly say that I am thankful for it.

Follow what some of the other posters state - try to make changes to your diet - for some folks it makes a big difference, if you can start exercising if you are not already. Do not start any supplements or vitamins though until you speak with the person(s) who is caring for you medically - some supplements and vitamins can be detrimental to your health and can cause issues with medications you are already on.

Hoping you find some relief some how.

I could have sworn I had something like a remission back in the late 1990s. My mouth was still a bit dry, but I had endless energy. I was working 3 jobs, going to school 20 hours a semester, and making straight A's and getting perfect attendance for the first time in my college career. I was always up at the crack of dawn to get my time in the practice room. I was organized and got my studying done and papers written early. I was on top of the world. That was like my "golden period." I think right now must be "black times." I sincerely hoping there's a mud-colored spot somewhere in my future - a meet-in-the-middle kind of place would be nice about now. I'm hanging in there by my fingernails, but maybe we can all hang together!