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A MyFibroTeam Member asked a question 💭
Limerick, PA

I believe I may have Burning Mouth syndrome. It Started with a metallic taste over 2 years ago, now it is dryness and burning lips. Many specialists later, and no answers except “ getting older!” This came up in my search and may very well be what I have. Maybe I’m not crazy after all!

November 11, 2019 (edited)
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Answer Summary

Members connected over the frustrating mystery of burning mouth syndrome, sharing experiences of metallic tastes, dry burning lips, scalded... Read more

Members connected over the frustrating mystery of burning mouth syndrome, sharing experiences of metallic tastes, dry burning lips, scalded tongue sensations, and the common dismissal by doctors who blame aging or menopause despite symptoms starting in members as young as 25. Several members offered practical suggestions including testing for Sjogren's syndrome (though many tested negative), checking vitamin B12 levels (especially for those on reflux medications), trying vitamin B plus zinc supplements, using preservative-free eye drops for dry eyes, and finding relief with ice, frozen grapes, or simply keeping something in the mouth. A recurring theme was empowerment through self-advocacy and peer knowledge, with members encouraging each other to keep body journals, trust their own experiences over dismissive doctors, and find validation in knowing they are not alone or crazy in facing these mysterious symptoms.

A MyFibroTeam Member

Yes Drs also thought I had sjogrens! Not sure if I answered your post already. LOL I can’t remember!

Anyway my tests kept coming back negative and even so Drs thought I had
Bc I have no tear production and low saliva production 2 major symptoms of sjogrens in addition to, of course, the fatigue and muscle weakness. My last rheumatologist was certain I had fibro and less certain I had sjogrens. He informed me (though I had not heard about) that fibro patients can also have dry eyes, mouth etc.

My mouth also feels hot and dry at times, I find ice to help w that. And I get an insatiable thirst (so I just drink a lot of water). I don’t like prescription meds so I opt for natural remedies and supplements to help w symptoms. For my dry and red eyes I use Ultra Systane eye drops withOUT preservatives. It works great for me.

(My dry eyes and dry mouth/throat symptoms come and go in severity, but usually worsen w flares).

Hope this was helpful.

Hugs 🤗

November 12, 2019
A MyFibroTeam Member

I was reading an article the other day about the human tongue/health issues and it mentioned burning mouth...which is due to the nerves in the tongue. This would tie in to Fibromyalgia symptoms as Fibro affects the CNS.

November 24, 2019
A MyFibroTeam Member

@A MyFibroTeam Member, I was diagnosed with lupus and Sjogrens in 2005 but I didn’t start getting BMS until about a year ago. Thankfully I don’t have it all the time because it’s very painful and irritating. I get it about 2-3 times a week. I’ve tried Several things for dry mouth but nothing has helped. When I do get it, eating frozen grapes help relieve it some. I guess that better/healthier than eating a bunch of popsicles 🤷🏼‍♀️

November 15, 2019
A MyFibroTeam Member

I find doctors are quick to point the blame at mental health and hormones - simply because we are women! Keep fighting your corner you know your own body! It’s terribly frustrating but I have faith that we will find answers eventually

November 12, 2019
A MyFibroTeam Member

And I’m sure it has nothing to do with age! I’m 25 and this all started one year ago.

November 12, 2019

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