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Sjogrens Syndrome Sufferers
A MyFibroTeam Member asked a question 💭

I am told I do not have sjogrens syndrome, however I have very dry eyes and dry stinging burning lips and tongue. What do you do to relieve the dryness, or what do you stay away from because it aggravates the symptoms?

posted December 18, 2019
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A MyFibroTeam Member

I was just diagnosed yesterday. The rheumatologist told me to have eye drops in my purse, by the bed. By my toothbrush and in the kitchen where a woman is most of the time. She said keeps those eyes moisturized. I had never been to her before. She was hilarious and a advocate for fibromyalgia.

posted December 18, 2019
A MyFibroTeam Member

Burning mouth syndrome (BMS) is a chronic and spontaneous oral pain with burning quality in the tongue or other oral mucosa without any identifiable oral lesion or laboratory finding. Pathogenesis and etiology of BMS are still unknown. However, BMS has been associated with other chronic pain syndromes including other idiopathic orofacial pain, the dynias group and the family of central sensitivity syndromes. This would imply that BMS shares common mechanisms with other cephalic and/or extracephalic chronic pains. The primary aim of this systematic review was to determine whether BMS is actually associated with other pain syndromes, and to analyze cephalic and extracephalic somatosensory sensitivity in these patients.
BMS was associated with headaches, TMD, atypical facial pain, trigeminal neuralgia, post-herpetic facial pain, back pain, fibromyalgia, joint pain, abdominal pain, rectal pain or vulvodynia. However, the prevalence of pain symptoms in BMS patients is not different from that in the age-matched general population. QST studies reveal no or inconsistent evidence of abnormal cutaneous cephalic and extracephalic somatosensory sensitivity.

posted December 19, 2019
A MyFibroTeam Member

I do have sjogrens and its a bitch (pardon the expression), I also have arthritis, spinal stenosis, degenerative disc disease, hypothyroid and fibro. not to mention a sciactic nerve that raises its ulgy head once in a while. I stay away from acidic foods (tomatoes, oranges) salty food (chips, ham, processed lunch meat and cheese). I brush my tongue with my toothbrush every day. if I get ulcers or thrush, I gargle with salt water. I know I said stay away from the salt but its the safest thing to clean your mouth with. As for the dryness, I use systane ultra in my eyes, cold compresses if they feel swollen and grainy and I have tried biotene but was not happy with it so I mostly eat hard candy. flavored life savers are the best. no peppermint, spearment or any mint. Aggrivates the tongue issue. To me plain water doesn't do jack. I add the Walmart brand of crystal light. crystal light leave an after taste. Walmart brand leaves a tiny little bit but is still better than crystal light. stay away from mustard of any kind, ketchup and certain mayonnaise. I use dukes and sparingly. I have also recently taken to making my own herbal iced tea. I get the flavored celestial seasonings bags and make a pot of tea in my coffee maker, add it to a 2 qt pitcher with sugar to taste. tastes good cold and if you want hot just stick it in the microwave. I have also discovered a drink called body armour. its like a Gatorade but tastes better and replenishes the electrolytes you lose thru normal every day activity. good for potassium. Remember to keep in mind what works for me may not work for you. but I am happy to pass on what works for me. I am happy to report the only thing I take for pain is Tylenol arthritis. I have Robaxin (muscle relaxer) and tramadol for bad days but those are far and few between now. I do get my days where my bed is all I want but they are down to about 1 or 2 every 3 weeks or so if I push too hard. I do take a lot of vitamins and supplements along with the rx meds I am required to take. I hope this helps you. It took a lot for me to get off the rx pain meds. withdrawal from the lyrica was horrible and gabapentin did nothing for me. But I am done with them.
Have a Merry Christmas

posted December 21, 2019
A MyFibroTeam Member

@A MyFibroTeam Member, I’m not sure if it’s a symptom of fibro. I do know it’s a symptom of Sjogrens which I was diagnosed with in 2005, 9 years before I was diagnosed with fibro. Too many people just assume new symptoms are fibro related, they all aren’t and should be looked into to prevent possible damage.

posted December 18, 2019
A MyFibroTeam Member

I have Sjogren's which started with Chronic Dry Eye. I too had plugs put in my eyes to help keep them moist as well as eye drops. My tongue has deep crevices in it as it only has gotten worse over the years. I always have a cup of drink with me at all times no matter wat I purchased a metal cup with a lid and metal and plastic straws with it. I prefer the metal straw as it is smoother on my tongue as well as colder. I have not found anything to help it at all other than the liquid which I take through a straw and swish around in my mouth and then swallow. My mouth also is extra dry as my medications dry it out as well.

posted December 18, 2019

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