I have been recently diagnosed with Sjogren’s Syndrome. I accidently found this web site and I’m in hopes to find someone that can help me make sense of all of this I never discuss my situation with anyone, I feel like they all think that I’m crazy. I’m so tired all the time I have become very angry. I have had people tell me that it’s all in my head and that doctors are just telling me that I have Sjogren’s so that I will shut up. They claim that it is not a real disease. I have attacks off and on (about every three months) they would last about a week and a half. They passed me from doctor to doctor and my tests all came back fine. I checked into the ER on three different occasions and finally after my husband stood there yelling that something was wrong they began to run more tests. I have not even had a cold in 20 years. They finally found that my inflammation levels in my body were extremely high. All that I could tell them was “ I hurt” first I would say its over here (maybe point to my right side) then I would say it was over here (point to my left side) I had no idea that it was inflammation. The last episode lasted for approximately two and a half months, Only my family members knew, I would continue to try and make it all day at work, My eyes, nose and mouth were very dry but I blamed that on allergys, My vaginal area became so dry that it hurt for me to walk. I had Brain Fog which at the time I had never heard of such a thing. It scared me to death and the doctor that I was seeing looked at me like I was crazy when I would try to explain. Of course at the time I know now that I was not making much sence, when I have these attacks I find it very difficult to speak property. Short term memory loss nausea, extreme pain, lower back and sciatic nerve problems. I am now seeing a Rheumatologist and he has put me on Plaquinil and prednisone. They say it will be a few months before I notice a difference with the Plaquinil. Is anyone taking Plaquinil or know anything about it. I’m not sick at the moment but I find myself unable to work the way I’m use to. Absolutely no energy and if I do get a little energy and try to even clean my house the way I use to I usually end up paying for it for a few days. Is there anyone out there that can give me some insight on Sjogren’s? I’m not very good with computers so I’m hoping I will be able to figure out how this web site works. I have tried researching this on line and it really only talks about dry eyes and mouth. In my case there are so many other issues that I’m wondering if I have been diagnosed properly. Thank you to anyone that

Hi Barb,
Here is some info- Sjogren's Syndrome -
http://www.google.com/search?q=Sjogr...ient=firefox-a


and Plaquenil info -
http://www.google.com/search?hl=en&c...quenil&spell=1

You might have already found some of the sites, but I wanted to post them all in case you hadn't.

www.sjogrens.org/syndrome/faqs.html
here is a web site to go to find information on SS. I hope it helps you. Everyone is different and have different symptoms with Sjogrens. Sjogren's can go into the central nervous system and cause pain that can't be explained otherwise. In Kansas Sjogren's Syndrome is considered a disability, but it all depends on what you are able to do functionally and like me you may have to do things in small increments like 15 mins then rest and go back and do more for 15 mins etc. It helps. Also drink water. There is medication you can take for the dryness in your eyes and vaginal problems. Go to a rheumatologist for your eye dryness and then to a good Gyno for your vaginal dryness. You can use natural eye drops for eye dryness and you need to take extra care with your eyes because SS does attack the eyes. Use sunglasses that keep the wind/dust/dirt from blowing into your eyes and rest your eyes as much as possible. My doc says not to take anything for allergies that will dry you up worse! or medications for that matter. SS dries up the mucus membranes and certain organs in the body, it's not like the normal fluid you intake daily, but you don't mention any problems swallowing, if you do drink a lot with meals and sip on water throughout the day. You definately want to keep your kidneys functioning so do not take any medications that cause them to overwork and drink water.

Also Sjogren's Syndrome can cause "brain fog" and chronic sleepiness/fatigue. Short naps, quiet moments, and just resting helps. I find I have to lie down for short periods during the day with no noise etc nothing to think about etc, just resting helps my body pain to lessen. Your doctor can put you on something for that also. Blessings to you. It sometimes appears to be a complicated disease until you figure out what is happening to you and how "you" need to be treated.

This has been so confusing. You have no idea how much I appreciate both of your replys.