Hi Karen, this is going to be a bit long but please bear with me 'cause early Sjogren's is sneaky & I'd like to give you a reasonably comprehensive overlook. I'll start with Dry Eyes & Dry Mouth 'cause they are hallmarks of Sjogren's. Dry Mouth - Even as a teenager, I remember always having a drink with me although I don't exactly remember why. Never went to the store, never went on a date, etc. without that drink. It was a part of me. It wasn't as if I felt urgent need to hydrate myself. Just always this desire for frequent small sips. That continued for the next 30 years but didn't get any worse. About 6 years ago, it became uncomfortable enough I started mentioning it first to DH. "Gosh, my mouth feels like cotton balls!" Soon, it was bothering me enough I mentioned it to my primary care doctor. I was taking Flexeril at the time for a spinal injury & my PC doctor just shrugged the dry mouth off as a side affect. Now, it's so dry it bleeds. Mouth sores - yes. Dry lips - yes. Blisters - yes. The dry mouth has progressed to now being nearly impossible to deal with but that has taken decades to reach this point. Dry Eyes - My eyes have sorta "itched" for several decades. I never thought much about it. I've had eye infections over the years also but they were far enough apart I didn't think to mention it to a doctor when a new one turned up. Dry eyes have not been my primary focus with Sjogren's but they are now dry enough my opthomologist pretty much insisted I have the Eye Plugs inserted. They've helped, a lot. I still need drops. Eye lid infections - yes. Sores in the corners of my eyes - yes. Swallowing, Talking, Choking - My Sjogren's has progressed to where I can hardly talk anymore. I also have trouble chewing & swallowing. Many foods are impossible for me to eat. My diet has changed dramatically in the past 3 years. I also choke - especially on pills but also just trying to eat a meal. At night, my throat swells & sticks together blocking off my air. I wake up in a panic reaching for water. Dry Skin - Again, for as long as I can remember I've had dry skin. I'd go through gallons of lotion. Now, I use prescription stuff that really helps. Fatigue - Gosh, just thought I was "weird" & a bit unlike my friends. I never had a curfew as a kid. Mom knew I couldn't stay up late enough to need a curfew. She was right. Sometimes, I would fall asleep practicing with my chin on my accordion. Again though - nothing that seemed like a trip to the doctor was necessary. I will say though that the fatigue was complete. Sometimes, it felt like lifting my arms to brush my hair was impossible. Muscle/Joint Pain - Today "this" hurts, yesterday "that" hurt. Everyday, somewhere else hurt. The pain would last for a day or weeks & then disappear just as mysteriously as it had arrived. I thought it must be "normal" & I was just a wimp. I was diagnosed with fibromyalgia at some point & from then forward whenever something hurt doctors would just shake their head & use that diagnosis as explanation for my pain. Many times the pain was unbearable. I once overdosed on aspirin trying to get relief. That episode resulted in more blood work. Negative for everything. The pain though continued. In my mid-40s, I had an extensive & unusual spinal surgery to correct a rare injury. The surgery almost did me in. After that surgery, doctors blamed the surgery every time I burped. I should note that I've had 13 major surgeries for "unusual" stuff. Fevers - I have a history of spontaneously running a fever. Fine one minute. Poof, next minute...I've got a fever of 101+ degrees. An hour later, I'm fine. Nightsweats - I've had then for decades. Always associated them with some cancers (I'm also a multiple cancer survivor) so I was afraid to mention them to my doctors. But, my fear didn't make them go away. Still have them. Still haven't told my doctors. Heart Palpitations - Ended up in ER. Diagnosed with "Anxiety Attacks". Nope. Sjogren's. Sensitive to Temperature Changes - I'm either cold or hot. There's only about a 5-8 degree range I'm really comfortable. It's not just chilly or a bit warm either. I'm either shaking from cold or in ER from heat stroke. So, we keep our house even temperature year around. Sometimes, cost isn't everything. Dental - Gosh, where to begin? Let's just say I fought a good fight but just a couple years ago I said, "ENOUGH! I can't tolerate this anymore. Pull them out, every single one - NOW! I'm not leaving this office until they are gone." Even implants would not stay in my jaws. I've pulled two that were erupting from my jaw by hand in the middle of the night to stop the pain. Now, I've got dentures (should have done that years ago!) but my mouth is so dry my tongue sticks like glue to the dentures & bleeds when I try to move it. Ugh. Neuro Pain - This is now a serious problem. I have no feeling at all in my legs/feet. Seriously, I can't feel the floor or anything else. Sharp pins/needles type pain virtually constantly. Stress - I had a garden accident July '09 & re-injured my spine around the surgical area (right between the shoulder blades). My back surgery had been so "unusual" a hotdog surgeon was brought in from Arizona. He published a "White Paper" on me that lives for eternity in medical journals along with the video they took of the the entire surgery. Anyway, the re-injury hurt so bad I had a stroke. Yep, I met the definition of "stressed" there for awhile. As I started to settle down from this little incident I noticed that my mouth was drier, my eyes were drier, my muscles/joint pain was worse, the fevers were more frequent, etc., etc., etc. I could go on with other symptoms but I think that's enough for you to get an idea of Sjogren's. Eventually, I found a doctor that treated me as a whole patient & didn't just look at the reason I'd written down for that particular appointment. It led to my diagnosis for both Lupus & Sjogren's. A word about the bloodwork is in order here, I think. I'd had these tests multiple times before - always negative. Many doctors said, "Tricia, I "think" you've got Lupus but your tests don't bear confirmation of that diagnosis." One even prescribed Placquenil & my fevers virtually disappeared. Unfortunately, that doctor left the practice & his replacement didn't believe my tests justified the risks of Placquenil. The fevers returned within a few short months. Anyway, my current primary care doctor redid the bloodwork yet again. This time, I was positive for both Lupus & Sjogren's. It tooks decades for those tests to turn positive. My last SS-A test results were 2.78. Positive. My SS-B test results were 3.25. Positive. Also, Sjogren's patients often show Vitamin D deficiency. I'm almost always testing deficient & take 50,000 mgs once/week for 4-8 weeks then off for a bit until we test again then back on for another 4-8 weeks. You will also, most likely, have an abnormally high SED rate. It will vary if you're having a Sjogren's "flare". BTW, that's the best time to make the doctor's appointment - when you feel awful, like you can't drag yourself anywhere. I'd recommend finding a doctor that will treat ALL of your symptoms. Treat you as a whole person with this variety of things happening that may seem unrelated, to you. Tell your doctor every little thing. Sjogren's is SYSTEMIC. It affects your whole body. Yes, there are specific markers like the dry eyes/mouth thing but many Sjogren's symptoms mimic other diseases. Diagnosis is often overlooked both due to doctor indifference & lack of persistence in patients. There is no defined Sjogren's protocol for treatment. It's a "treat it as it appears" approach for most doctors. (bummer) But, a protocol is being developed now & the goal is that it will be available to doctors in 5 years (I know, sounds like an eternity but, like breast cancer, you have to start somewhere). I've recently been excepted at John Hopkins. They have a specific Sjogren's department & a doctor heading that clinic who has chosen Sjogren's as his life work. My first appointment is October 18. I've received volumes of "stuff" from John Hopkins regarding my appointment that will be two full days. I'm got appointments for about a dozen specialized tests. I've got advanced Sjogren's & frankly feel just about defeated. After 50+ years, it's taken a toll. But, I accomplished a lot with my life - Sjogren's be damned. I don't know if my disease process will help you identify what you're experiencing, or not. But, don't ignore your symptoms. If they sound like they could be Sjogren's - be persistent. Just know that it will be a journey to diagnosis. Not a short sprint. Since getting me as a patient my PC doctor has been able to make a diagnosis on another women for Sjogren's. She's thanked me saying she would have overlooked the clues had it not been for having me as a patient. We're learned together about Sjogren's. So, doctors are becoming more aware & Venus Williams' diagnosis, hopefully, will also draw more attention to this autoimmune disease. mboston, don't give up. If your gut feeling is correct (and, IMO, our bodies usually tell us the truth) then you'll need to stay in your doctor's face until you get a blood test that pops positive. That can be illusive. If you're having a flare...make an appointment. Tell the receptionist that next week is not OK...you need an appointment tomorrow! /tricia

Has anyone tried Hyaluronic eye drops for dry eye syndrome? Seems as if it might help. WebM.D. "Hyaluronic acid is a substance that is naturally present in the human body. It is found in the highest concentrations in fluids in the eyes and joints. The hyaluronic acid that is used as medicine is extracted from rooster combs or made by bacteria in the laboratory. People take hyaluronic acid for various joint disorders, including osteoarthritis. It can be taken by mouth or injected into the affected joint by a healthcare professional. The FDA has approved the use of hyaluronic acid during certain eye surgeries including cataract removal, corneal transplantation, and repair of a detached retina and other eye injuries. It is injected into the eye during the procedure to help replace natural fluids." A link that might be useful: www.webmd.com/vitamins-supplements/ingredientmono-1062-HYALURONIC%20ACID.aspx?activeIngredientId=1062&activeIngredientName=HYALURONIC%20ACID

Thanks for advice on headaches. I did tell nurse. She said it was probably my sinus. I also told my doctor about headaches behind my eyes since my teens and how no one had any advice or explanation for that type of headache. He didn't have one either and he didn't relate those headaches to the problem of floaters now as floaters are age related. I use to get bad migraines, but never so bad that I coudn't go to work etc. I get a migraine maybe only once or twice a year now whereas before I was getting them 1 or 2 times a month. Possibly because I've cut out processed foods and cane sugar almost completely. I do know that after I ate a half a bag of gummies (which was a Christmas gift and I'd never buy for myself), I got a headache right after and all the other problems came after. So I think sugar is the root of most problems.

Try preservative free eye drops. The preservatives in many non PF eye drops can be toxic to the tear producing glands. You can also try an ophthalmic mineral oil preservative free ointment before bed and even during the day. A little dab (much less than a "dab") will do. I take a clean index finger, put a tiny dot of the petrolatum ointment on it, then apply it to the lower lid margin and beginning of the eyelash area. The oil will migrate onto the surface of your eye. I found it helps a lot. Puralube by Fugera Labs may be a better price and is the same thing as the "high priced spreads." I am going to assume that you e already gone to a good eye doctor who is cluey about sicca syndrome, dry eye and other related conditions? One thing that sound a bit odd but that can help tremendously is having liTitle silicone plugs "punctual plugs" inserted into the puncta (those little drain holes) of each eye lid margin (corner). It can help preserve tears by keeping your natural eye wash tears from leaving. Caveat -- MY OPINION: I would caution against anyone rushing into having the eye(lid) puncta cauterized. Your tear production may not always be scanty and you could end up with an overflow. That can be irritating and is no picnic. The silicone plugs can be removed. The scarring from cauterization is pretty much permanent. Another thing to be aware of with cautery, is that, occasionally, eye lid tissue can vaporize away. Oops. That could leave a messy bit of tissue to cope with. For whatever reason, knock on wood, my severely dry eyes got much better. I am thankful that I did not have the punctal tissue permanently ablated. Best wishes and comfort to anyone coping with dry eyes. PS Ditto to outsideplaying's suggestion about gently bathing the lid margins. Blepharitis can also interplay with eye dryness.