I had dry eye and blepheritis 6 months. Was ok. This week my dry mouth started. I can’t sleep well. I have not been diagnosed but I feel I have sjogrens. How should I start? What products help with dry mouth. My anxiety is through the roof. Can’t sleep drinking water every 2 minutes
My eyes and nose feel really dry as well
Hello Marc
Have you seen your medical doctor to start the process of ruling things out? My eye doctor was the first one to suspect sjogrens and contacted my rhuemy doctor.
Sorry to ask so many questions. What kind of stomach issues come with Sjogrens?
Last question. What does everyone eat that doesn’t aggregate the stomach or dry mouth
I need to make some serious changes. My guess beer, soda, pizza, wings are out.
Honestly Marc it depends on the person. I can eat everything I used to as far as stomach issues are concerned. I avoid certain things that are known to cause inflammation but that's it. Even that isn't across the board for people. Everyone's journey and tolerances are different. I have heard others here say stomach and intestinal issues are a problem for them so i'm sure they will chime in. Have you made a doctors appt to make sure that it is SS? Just to make sure that you aren't missing something else….
The dry mouth is a little different (though mine is more in the throat). I can't eat citrus much because I get small sores in the mouth. Same with eating apples too often. Oh and i have to be careful with spicy foods because it feels like they close up the throat. Its odd. Sorry for a round-about answer but hopefully it helps.
Thanks. I have made an appointment for early next week. I’m hoping this is something else but my symptoms seem so similar
Good luck next week and keep us posted. Just remember a lot of us had our diagnosis missed or delayed because it can be hard to catch.You may have to advocate for yourself a bit in getting answers. Feel free to ask anything you need in that direction too....we've been there.
I truly appreciate the help and need it. What tests should I ask my GP to run? I have an appointment with a ENT tomorrow. Any suggestion / tests for them?
I'm hoping TJ or Assybish answer up on these as they are the most detail oriented here. Personally, the test that showed SS and is offered here (NY) is the Sjo test. My eye doc was the one that ordered the test as he saw the development of it. On normal tests for RA, etc I always test negative. My original doctors stopped there which delayed diagnosis and treatment.
As a matter of maintenance they keep an eye on my D3 and B12 levels as well as sed rates, etc but that's after the diagnosis.
Morning Marc- my first crazy symptoms was eye problems, I thought it was allergys so I would take Claritin, bad move. That drys you up, then I was ER for my eyes swelling up so bad I couldn’t see. Went to internal medicine dr- they ran a ton of blood test— everything looked great except for my ANA test, that test shows possible lupus and other autoimmune diseases, mine was positive three times in a row. I also went to allergist to rule out things there. Then I was sent for an EMG— ouch!!! That was fine so they were looking for muscle and nerve damage. Then rumatoligist, ana positive again, mind you this is all within a 3-6 month window. I’m very assertive when it comes to me and my health. So dr said Lisa you are a puzzle, I looked at him and said ----- I haven’t cried in 2 years and I look like a darn chipmunk sometimes— yep I have the blessing of sjogrens. I also see a natural path- I don’t drink-smoke-eat anything with gluten and vegetarian, so far no visits to ER, that is a huge thing for me. Salty foods make my mouth very sore, so does sauce. I take a lot of vitamins and chew a lot of gum, gum will help stimulate the glands which will help with dry mouth. I had to learn what would work best for me, it will take time but you’ll get there, be patient with yourself. 
Thanks Lisa and enjoy life. I don't know how you stay so positive but its uplifting. I've seen the Opthlamologist, Dentist, and a PCP. The PCP decided to do 4 blood tests after he pretty much told me to get off the internet get on anxiety medicine and quit worring about it to much. He thinks in my head however I convinced him to do the tests anyway. The dentist was more knowlegeable than I thought howver I'm not sure she understands that this disease affects men as well and at any age. She said it was a low probability as I'm a guy and not 60 years old. Good news she said I had great teeth. Opthlamologist told me to go to the GP but didn't seem to be concerned as my next follow-up is 4 months away. I'm pushing this as fast as I can. I'm seing a ENT today. I also have a very good friend that is a GP so we will look at my blood tests next week. I'm trying to get a referral to a Rheme so I can start that process as well. Sorry for the long note but hoping these Dr's are correct but I like to be in control of my health.
My dentist was confused because ha has sjogrens patients that have a lot of dental problems, thank the dear lord my teeth are presently great, I have more of the dry eye symptom and stomach/throat. I always listen to your body, it will tell you what steps to take. Honestly, I have every copy of all test, and I knew from checking it all out what an ana test was for and a SED rate, like I say knowledge is power---- and lol I do have my moments, but as soon as I wake up I count my blessings and am so grateful to function. Your on the right path to find out what is going on. Keep asking those questions:)
Hey...was wondering how your appointment with the ENT went.
AI diseases are so frustrating because they can be hard to define and hard to catch. Hang in there. Lisa is right that knowledge helps a lot.And listening to your body will keep you moving in the long run. I would add that you should remember that we are all different so don't worry that what someone else is going through is going to be your future. I think in a funny way SS has made me more appreciative of things...the good people in my life, the times when I can really get out and enjoy things, my faith helps, things like that. And you keep fighting because you have to. Focus on moving forward if you can.
EnjoyLife said:
Hey...was wondering how your appointment with the ENT went.
AI diseases are so frustrating because they can be hard to define and hard to catch. Hang in there. Lisa is right that knowledge helps a lot.And listening to your body will keep you moving in the long run. I would add that you should remember that we are all different so don't worry that what someone else is going through is going to be your future. I think in a funny way SS has made me more appreciative of things...the good people in my life, the times when I can really get out and enjoy things, my faith helps, things like that. And you keep fighting because you have to. Focus on moving forward if you can.
Marc said:
EnjoyLife said:Hey...was wondering how your appointment with the ENT went.
AI diseases are so frustrating because they can be hard to define and hard to catch. Hang in there. Lisa is right that knowledge helps a lot.And listening to your body will keep you moving in the long run. I would add that you should remember that we are all different so don't worry that what someone else is going through is going to be your future. I think in a funny way SS has made me more appreciative of things...the good people in my life, the times when I can really get out and enjoy things, my faith helps, things like that. And you keep fighting because you have to. Focus on moving forward if you can.
Thanks for asking. Your advise is very appeciated and your words of encouragement even more. The ENT may do a biopsy but will depend on the test results. I'm waiting for all the results but will probably come in early next week.
I do two things to cope with dry mouth. I drink water all day long, sips at a time. Second I use Biotene mouthwash, specially made to treat dry mouth. I have found that the Biotene brand works best for me. I have tried other brands of similar products but like the Biotene the best. Another thing I have done is chew gum sweetened with Xylitol. Spry makes the best I have found. They also make a mint you can suck on which help saliva production. My dental hygienist says that Xylitol helps reduce plaque on the teeth anyway so it's a win, win. Sucking on non-sugar hard tack candy also helps. I also learned a trick which helps when I don't have any of the above immediately available. It you put GENTLE biting pressure on the side of the tongue it will cause you to salivate. I bite gently on first one side and then the other. It gives me immediate moisture in my mouth.
Hope this helps. I have found by doing these things I have gained a measure of control. I still carry gum and a bottle of water with me at ALL times. Good luck!!!
When one dr told me we’ll see in 3-6 months another dr told me and what do we do in 3-6 months when the results are the same??? Wait a few more months, and yes taking control of your health is great. I drove my drs crazy- felt so bad I delivered candy to there offices:) but like I say —knowledge is power, gets the proper blood work done–start with the ana and sed rate. Everyone said wow you got a diagnosis fast, I don’t play around when it comes to this. Hope tmrw is a better day for you.