Can anyone relate?

Does anyone here experience enlarged parotid glands and swollen temples. Mine swelled up two yrs ago and have never really gone down. My eye sensitivity is the worst my doctor has seen in his patients. Most days I even have to wear tinted glasses in my house. If I go out and have flashes of light and shadow I become so dizzy and nausea. I become very weak and must lay down. It feels as if I had too much to drink and spinning feeling. I also cannot chew very much. My jaw becomes very painful after a couple of bites. Most food is chopped very small and mushy? My mouth and digestive tracks feel raw most of the time now. Reflux several hours after eating…IBS,migraines,neurological,neuropathy, vision problems, joint pain, heart inflammation.

Unfortunately, my diet, supplements, medications arenot slowing this train down no matter what I do. I have read everything and tried it all from vigilant dietary to hormone replacement, handfuls of nutrients per day to nothing for months at a time to get an accurate idea of how my body reacts. My new life leaves my family and friends calling me bubble girl… No sun, no heat, too many no’s on food to mention. No tolerance for any strong smells. I keep my spirits up and am blessed with a kind, generous, loving, funny partner/husband. I meditate and hug on my pups to soothe my soul. Anyone else?

Hi KK, I had to look up the gland, and yes, if not swelling that I can notice, surely that gets sore, so do the temples, but

then, I always have a headache from my neck, so never related this to Sjogren's. Oh honey, you seem to have gotten it all! I had some trouble with reflux an gerd, and my DC gave me Spectrazyme, a plant based pill that helps you break down your food, dairy, protein, plant, it saved me from a life of nexium and tums, and this is the one that does the most, I have looked at the labels of others, no comparrison. Run it by your Doc first, but it stopped my problem.

You have to keep your spirits up, each and every one of us has to find something to hang onto for that rope of, even thread of hope! Mine are my grandkids!

Sounds like you have been everywhere, have you been to an allergist? Just a thought I had. Surely if you are like me, you are sick of going to Doctors, but they are so necessary.

I wish you the best, glad you are with us!


Terri, thanks for the medscape link. I had not read their info for at least two yrs. it is good reference info. My eyes and brain do not like to read and concentrate for very long. Too weak to sit around on computer and look up much of anything these days. So, again thanks for the easy link.

SK, thank you for sharing. I will look into spectrazyme. I currently take a digestive enzyme by dr. Mercola. And his probiotic as well. Then I eat lots of garlic as a prebiotic…

I have been to an allergist and tested for everything… Results: Vazo rhinitis (sp)? I react and am sensitive to everything but no full blown allergies. On my own, through a rotation diet, I have learned that a diet of lean organic pasture meats, organic low inflammatory veggies, and organic fruits work best. Thats really hard to adhere to in our culture, so i rarely eat out because of grains and sugar in everything. Then, if i fall off the wagon with sugar i have a hard time getting back off… Im sure you guys know what im talking about. Mine is dark chocolate!!! I have to really limit my intake of all grains to a minimum and gluten free. Like a paleo diet.

Thanks again for sharing tips and your thoughts, I am grateful.

A nurse friend of mine on Fibromyalgia site takes prebiotics, but I have never heard of garlic as a prebiotic, very interesting. I have so many interesting conversations with her, though she is an AMA nurse, she also uses many natural methods as she has become sensitive and allergic.

I too take probiotics, and have good pharma grade vitamins, for myself, my Mom and keep them here for the little grandsons when they come to stay.

I do know that when they built the great pyramid the workers were fed huge amounts of garlic and onions as antibiotics to prevent outbreaks of illness.

You are grain sensitive like so many! I am surprised that I am not! At least not yet. Stripping the grains down until they have no nutritional value has not helped anything, in my opinion. My DC says mold is a big factor in this sensitivity/allergy and with my allergies to mold, it is a wonder it has not affected me. I looked this up and decided to post the link. I have had rhinitis dxed with seasonal allergies. Mold, dust, dust mites, maple pollen. The farmer beside us just did this tree planting program and planted hundreds of trees, guess what they almost always are, yep, maples! Can't wait!

You are a very welcome addition to our group. Did you come here from the Lupus site, or another Ben's Friends group? Seems I should know you, but am in many groups and after a while, have trouble keeping track of everyone! Most days I have trouble keeping track of myself! LOL!

Yes, I just found you on the Lupus site, thought you were familiar! Forgive me!

My sjogrens tests twice were 'off the charts high' and it is DEFINATELY secondary to the Psoriatic Arthritis, so imagine how strong the arthritis is in me!!! Since the weather has began to cool, the stiffness has been so bad! What a difference in my entire back with the cooling temp! UGH!!

The Rheumatologist has no doubts about this, we did talk about this last time, just did not get into details with the sjogrens, but next time... I guess even for them it is difficult to sort out what is what when they are all so close! All so very much the same with autoimmune.

I just recently joined a new sub-group on Fibro on lyme disease, and it sounds just like a combo of fibro and autoimmune, especially arthritis! We live in the country and I have pulled ticks off my husband and my little 2 year old grandson, that is why I joined. It is soon to become a dedicated site, like this!

Wow you gals sound soon smart! I will add that the overlap of these autoimmune diseases is crazy! My doctor says my Sjogrens is jokeying for 1st place these days… I was diagnosed with 3 of a 5 band titter (I think) for Lyme disease. They said I had it really bad and did not get treatment. Funny, I went to several docs and all said nothing wrong except depression and anxiety. Yrs. ago…

Then I was diagnosed with SLE Lupus, Sjogrens, Reynauds, fibro, artrhritis and all the wonderful little subsets as I mentioned before…

I never knew you were suppose to take antibiotics for tick bites profolacticly (sp.)? Til I was diagnosed with it from late stage symptoms of Lyme disease (same as Lupus)…

P.s. another pre biotic I remembered that I eat a lot of is ginger!

Also I am on the lupus site here, I just haven’t opened and system didn’t recognize me, made start over with new acct. I kinda come and go around here and LFA.

Good chatting with people who understand. Dancing with wolves is such a slippery slope!!!

what a great post!

How are you doing, kK?