How I cured my BMS

Burning Mouth Syndrome
#1

Hi,

I had BMS symptoms for over 5 years. It started with sensitivity to spicy food, mainly hot sauce. It got to the point that toothpaste and sodas would burn my cheeks and tongue.
Mouthwash felt like I was gargling with acid. The inside of my mouth was also very sensitive to toast or chips, i.e. anything sharp felt like it was cutting the skin.

It was suggested that I might have food allergies so one at a time I systematically removed foods from my diet. Nothing helped.

Finally, I realized I had never given up chewing gum. Bingo!
The pain went away in a week. I have retested to be sure and it is the gum. Extra sugarless gum; contains sorbitol, manitol, and some red dye. Not sure which is the culprit.

Hope this helps someone,
Steve

#2

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#3

Isw,

You didn’t read my post very carefully.

It was the gum that was CAUSING my BMS!
Have you tried quitting?

Steve

#4

What meds are you on? lw

#5

The gum is the only thing that saves me during the day. I chew gum as soon as the fire starts and don’t stop until time for bed with all my sleep aids that put me out. Could not live without the gum! lw

#6

You are very lucky. I have never heard of BMS being caused BY CHEWING GUM unless there is some allergy. Those of us you have it have had some type of trauma or allergic reaction to something. All of us in " the group" rely on chewing gum for pain relief. Mine is neuropathic from injection or tooth extraction to 5th cranial nerve. No cure…lots of pain and suffering. lw

#7

Thanks Steve,
I, too, have found that chewing gum is the only thing that saves me when my BMS kicks into high gear, however, when I stop chewing the gum, it comes right back. The only time it does not send me thru the roof is at night and it does not hurt while I sleep, but the minute my foot hits the floor in the morning, it is on low flame ready to accelerate as the day goes on. But if I know I have to survive that day, I will resort to the gum. However, I do believe a gum chewing girl is like a cud chewing cow so I try to make it so not so noticeable. I had a friend tell me “you are chewing the hell out of that gum”, I did not realize how much and how fast I chew when to level of pain is a 10 or higher. thanks again, lw

#8

Try nicorette chewing gum. I too look like an old cow but it is the only thing that helps me

#9

SherryLyn and lsw - Are you from the Forum we used to meet in? This is Mazza in the UK!

#10

Yes, Mazza we are the same people and still in pain due to our BMS. I read one post that said she chewed Nicorette gum which really surprises me. Are you having any luck with anything that works? lw

#11

Savella is milnacipran, an SNRI. A few reports in the literature demonstrate relief from BMS. But not always. It appears, then, that experimenting with different meds may be needed.

Also, I urge those still suffering to look into mast cell activation disorder as it may open up another avenue of relief.

#12

Mauricev, I read a little about the mast cell activation and it is pure greek to me. Can you explain it in layman’s terms? Also I think you said a dr in SC is doing this. I
am in SC so I would like to contact him for a possible consult. thanks, lw

#13

Yes, I’m from our old group (that you started, if I remember correctly.) Sometimes I still write to “the group” or individuals, but few and far between. Peanut butter and dark chocolate can still put me into a flare, but it’s minor when compared to the past. The main lasting effect is my lips always feeling dry and sticky. They will peel if I don’t keep something moisurizing on them at all times. Writing on this site is very difficult…Sherry

#14

Thank you Mauricev for the very helpful information. I am
going to contact the MD that might be of some help regarding my God Awful BMS. I am on disability now due to my condition and can’t work. Any help will be a blessing. lw

#15

Is anyone still here? Can I please ask some questions?

Does body position make a difference? Does the pain ever shift location?

Have any of you been evaluated for mast cell activation disorder? A doctor in South Carolina has traced some cases to this and treated them successfully.

#16

Hi everyone,

I'll be more than happy to answer questions. I had daily pain with BMS for over 10 years. I think Savella was what made my condition improve dramatically. I started taking it about 3 or 4 years ago, when it was approved for Fibromyalgia. Happily, as a side effect, my life with BMS has been mild ever since.

Chewing gum was a lifesaver for me. Sherry

#17

Mast cells are a component of the immune system that carry histamine and other inflammatory mediating chemicals. They are suppose to release them in response to injury (and in allergy) but they may go “crazy” so to speak and release them when they shouldn’t. Dr. Afrin has found in at least six women, it caused their BMS and he has treated them successfully.
His info is http://clinicaldepartments.musc.edu/medicine/divisions/hemonc/faculty/afrin.htm

#18

Hi everybody! Can I guess that I've already met up with Sherry and lw? This is Mazza from much earlier website forum.

I have to say that I had nver thought of there being an ingredient in chewing gum that could exacerbate the bms, but I haven't chewed gum for ages now and my bms has been fairly under control, although I still take regular meds. There's nothing to say that we don't chew the gum for a "relief" from the usual "burn" - but perhaps to disguise it as in using Capsicum, which I found just masked the symptoms and I couldn't stand the stuff.

#19

Steve where are you with your pain level now? Chewing the gum is still what works for me along with 75 mg of Lyrica six times per day and the amitriptylene. So sorry it does not work for you because if I do not have the gum when the pain is off the charts I just end up in the bed trying to go to sleep, regroup and start over. lw