Burning Mouth Syndrome. I have it very severe.

Yes, I feel it in my throat as well and roof of mouth. Sometimes it’s like the roof of my mouth has small cracks . Also, I’ve noticed I can no longer feel when something I put in my mouth is too hot.

I have had this for over 10 years . I’m a 72 year old female. It was so painful my last bout that my dermatologist gave me a steroid shot for the swelling of my lips.

Some things I have found useful.
I have found some relief with Tums chewable.

I also just found the Lifesaver Butterrum mints help soothe it.

I keep a bag of fast food place “Sonic” ice in the freezer. It is the lighter chewable pieces of ice that gives temporary relief.

Hope this helps. ~ v

Tums Chewables help as does Lifesaver Butterrum mints.

Hi, I'm conni. i have had BMS for 4 years now. I have changed toothpaste,take gabapentin,tried the hot sauces and water swish. My Dr. prescribed a special mouth swish. It seems to work for about 3 hr. Cost is outrageous an my insurance will noy cover it. I have lost all taste. The Dr. and Dentist have no ideas. labs all normal and I am in physical health. Next step is neurologist. Ant ideas would be appreciated.

I’m 75. Had it at least 5 years. Don’t remember how it actually started. My bottom lip is on fire but looks normal. My palate and tongue especially the tip are also on fire. I gave into temptation today and had a great cup of coffee, supposedly low acid, mold free. Paying the price! I just live day to day. I use ice, Blistex, cough drops which are numbing. All we can do is treat symptoms the best we can. I’m convinced there is no cure. We’ll just somehow try to live with this the best we can. I’m on the Facebook page Burning Mouth Syndrome. If anyone wants to message me, I’m available.

Hello @vleigh, @connie1954 and @carolgail1949, Thank you for sharing your experience with BMS. I don't have BMS but would like to welcome you new members to Connect. I also recently saw this reference and was wondering if anyone has tried Low Dose Naltrexone (LDN) to see if it helps.
-- "LDN Has Given Me My Life Back": Cindy's Recovery from Sjogren's & Burning Mouth Syndromes:
https://www.ldnscience.org/resources/interviews-patients/cindy-sjogrens-bms

Thank you and will read as soon as possible! Carol

I had to divide my response into THREE SEPARATE PAGES because the length did not allow it to be uploaded...
PART ONE:
My sincerest sympathy and empathy with what you've undergone!
I totally concur that the hospital has to be held accountable. You've been seriously and adversely affected by whatever action or lack of action THEY imposed on you.
Must be so painful to try to even sip a non-irritating liquid, let alone try to place a bit of nourishment into your mouth. Totally unacceptable that the hospital washes its hands off the consequences of your having been in THEIR dubious "care"!!! So their stance is that it is YOUR tough luck, leaving you to "deal with it"??? Immoral, unethical, irresponsible, and definitely litigious.
Does your country have free legal counsel for eligible citizens? The term here for free legal representation is "pro bono" --- the lawyer gets no monetary compensation UNLESS he/she WINS THE CASE. You would owe NOTHING if he/she loses the case. Each law firm has parameters which you must clearly understand before signing on for legal representation...

See what of the following (that we have rights to) you can do for starting your quest:
• Request your medical records, ALL that relate to your specific hospital stay. Specify DATES, and state "ALL records, including bodily fluid tests, radiological and any other testing, related to RSV, the hospital stay for --???-- (give DATES both beginning and date of discharge)
•Request that doctors' summaries of each and every in-office and in-hospital interaction with you be included.
You might have to pay a per-page fee. (At the very least, you have the right to request access to your records, and provide you a space in which you can sit and search through your records; perhaps you can use cell phone to take snap-shots?). In the event of lawsuit, your law firm would be responsible to requesting, obtaining, AND paying for copies of the records. THEY contact the appropriate department (here called Medical Records), and THEY get the bill for copies.
•Seek medical help for whatever field of medicine in your country would deal with mouth conditions. Here, it's ORAL SURGERY. You ABSOLUTELY need to have that highly suspicious growth examined, and tested (as with biopsy), and determination made as to specific medications deemed necessary to be prescribed (as appropriate). In MY HUMBLE OPINION, an over the counter mouth rinse/ointment is inadequate and inappropriate. Might soothe/numb pain at best. While I am not a doctor, I did hold certification as a medical assistant way back in my late teen/early twenties (am now 77!), and I did have training/education in anatomy, physiology, blood history and analysis, cerebrospinal fluid testing, radiology, cardiology, and so much more learned while working with a major medical/teaching complex in NYC. All of that has armed me throughout my life when dealing with medical issues involving our children, my husband, my mother and sole sibling (a brother), AND my own laborious medical journey. So I encourage you to PLEASE ADVOCATE FOR YOURSELF.

SEE PART TWO...

PART TWO response to mudman:

Don't be hindered when a door is slammed in your face. If possible, engage the help from a trusted family member or very close friend, to be present when attending visits; they can serve as extra pair of ears, and can take notes that can be referred to later. (AND TAKE A LIST OF YOUR OWN QUESTIONS, etc.) Needs to be someone who can travel the long, arduous journey ahead of you. Someone who can bolster your spirits when you feel down, defeated.

Please do NOT allow yourself to be swept under the rug!

MORE SUGGESTIONS:
•Since hospital does appear to NOT WANT to respect and acknowledge your existence, let alone having been in their care, I doubt that any Patient Advocacy or Social Services agencies within the hospital will we helpful (if such departments even exist). But TRY ANYWAY. Be firm, persistent, but do so respectfully, unemotionally (a difficult thing to do!), courteously. When told "Sorry, we can't help you with that," counter back with "Well then, can you please provide name of department/person, etc who CAN?" Reach out to both of the aforementioned departments and present yourself in a non-confrontational manner, asking them for help in whatever steps they can provide to you.
•Here in USA, we have government agencies for seniors (age 65 minimum) and the elderly (in 70's and up, the group to which we belong!). They have social, financial, transportation, behavioral health, and so many other ways of helping "us older folks"!😁. But YOU must take the first step in ferreting the info. As I said you ABSOLUTELY MUST SELF-ADVOCATE.
•Keep a spiral notebook by your computer/telephone (I'm fortunate to have a dedicated office, with computer, monitors, landline phone, and area for printer along with plug-in stations for recharging cell phones, etc.). Learned LONG ago, to buy notebooks like the ones grandchildren use at school, and I JOT DOWN info when making calls to insurance company, doctors' offices, WHATEVER! Don't use slips of note pad (can belts, thrown out, etc, leaving you frustrated and no trace of your hard work). I include date, time, name(s) of people, purpose of call, whatever info is given to me. Learn to abbreviate to make note-taking easier. This info is crucial when it becomes necessary to SUBSTANTIATE what indeed was said, WHO said it, etc. ALWAYS ask for name of person with whom you speak. When necessary, I get employee identification number (like when speaking to insurance, hospital personnel, ANYONE).
•If you don't have a small filing cabinet, get a sturdy box or binder, include dividers and I even have those with pockets which can hold items like receipts, etc.).
•Get a medium-small sized sturdy plastic box (got mine at what we used to call 99Cent stores, but can find them at other places). I like the clear plastic b/c I can see what's inside: business cards, etc. of all facilities/people with whom I've interacted. Keeps my desk drawers from being congested and messy. Create "separators" if you wish, to further organize them (or they will wind up "tossed and tumbled", making it necessary to search through them🙄.
•I keep a Contacts file within my computer program, itemizing names, addresses, telephone/email/fax info on each and every member of my Medical Team. I can then add/delete/correct as needed. When info is required by new doctor/facility, it's convenient to just make a print out, thus providing ALL the info. I do this in place of filling out the insanely small spaces on a questionnaire. I just write "see attached sheet". I have such a file also on Past Surgeries. also Hospitalizations, and another for Tests/Procedures. Such time savers, and my arthritic fingers appreciate not having to fill in those hideously tight-spaced forms!

SEE PART THREE (last section of three)

PART THREE, last submission of THREE, to @mudman

Lastly, but of deep importance, here in USA, we have agencies to which patients can report cases of what is believed to have been malpractice, etc. I have prepared a rather detailed, step by step accounting of what amounts to LIES placed into my medical record of events encountered in the emergency department of one of our local hospitals. Lies that refute what actually transpired while I was there for about 2 1/2 hours, scared to death, with blood gushing out my left nostril, down my throat, gagging on blood clots and the taste of warm blood...there is so much that was NOT provided to me, and then told at the end of 2 1/2 hours, "Sorry, there's no ENT available to help you here, so we are sending you to another hospital." Except that the record shows that I LEFT AGAINST MEDICAL AVICE/CONSENT! NO, THEY wanted me to leave, thus more lies surrounding the papers presented for me to sign (which I told the nurse I could not read what was there since I di not have my readers, but she said no problem, just sign and I'll take you out to your husband and you can leave...and so I did, wanting to be out of that nightmare place! NOTHING said about "leaving against medical consent/advice..." There's a great deal more, but suffice it to say that the New York State Dept of Health oversees what happens in hospitals, medical facilities, etc., and when I spoke to them, they indeed were VERY interested in what I endured and the subsequent FABRICATIONS entered in medical records (in itself a legal issue). My point? YOU may have access to filing similar report about your situation and the hospital could well be investigated. AS WELL THEY SHOULD BE. YOU NEED TO FIND OUT IF YOU HAVE SIMILAR RECOURSE IN YOUR COUNTRY.

Okay, I've written a book here. Hope you will make the time to read through what I've provided to you, and find helpful info.

Wishing you the best: Iris🌺🙏🏽