I’m wondering if anyone that is diagnosed with FM also has burning mouth syndrome? Are the two things related or just coincidental?
Thanks
CLG
Hi Kate, I’m new to this forum, and I do have the burning mouth symptom, but for some reason, it doesn’t start until late afternoon or early evening, and sometimes doesn’t start until late evening. Along with it, I have ringing in my ears that is usually nighttime as well, and a frostbitten sensation all over but mostly extremities…my holistic md says it’s probably symptoms of candidiasis (an overgrowth of candida), but I’m hoping he’s wrong as I’ve read it can be just part of FM. I’ve tried so many things–cream of tartar on your tongue can help, but temporarily–nothing really works for me so far, long term.
Thank you so much for your reply. I have had this Burning Mouth (BM)for about 8 years (along with the other FM symptoms) - have literally tried dozens of off label drugs, mouth rinces etc and have yet to find an effective treatment. I have had procedures where a long needle was placed into the glossopharyngeal nerve under my tongue and radio pulse therapy was used to try to deaden or retrain the nerves to eliminate the pain. Unfortunately that didn’t work either. So I continue to see a very understaning pain dr. who is willing to try anything to help. My BM pain is consistent all day - much less in the morning and peaking in the afternoon and evening. I do use Xylocaine spray (prescription) which tastes terrible, but numbs my mouth for a bit to provide a break from the pain. I hope you find some help - I appreciate your reply!
Hi Kate! My name’s Melody, by the way–when I signed up I used Momella as my username because it’s a nickname my daughter gave me. 
My goodness, you’ve gone through such torture just to try and relieve the BM pain without result. That stinks! Are you on any meds, and if so, do they help BM or fibro pain even a little? I’ve had this symptom for about as long as you have. I’d love to know if anyone else besides us has the BM with fibro, or any of the other symptoms I described in my last post. And I’ve done lots of googling on the question you started this thread with–some medical people do believe it is part of fibro, but not that many.
I’m sorry you experiencing BM. I have had FM since 2009 and now that I’m thinking more and more about what I’ve experienced in my life…Sometimes I get this sensation of a burning mouth after having a bowl of ice cream or italian ice. Is this anything like what you’ve experienced? I don’t know if what I’ve experienced is anything remotely what your going through. I definitely don’t have it all day everyday which if I did I would not be a happy camper. My Rheumatologist has never mentioned BMS but I do have any appointment at the end of this month. I can ask them for you.
David
Hi Kate, My name is Karen and I’ve just joined this online support group. I was diagnosed with Rheumatoid Arthritis about 10 years ago and Fibro about 10 months ago. The doctors are now contemplating if I really have RA at all. Because of the RA diagnosis, I was on methotrexate for many years. When everything got what seemed like a 100 times worse, they increased my methotrexate dosage. Not long after that I developed sores in my mouth and Burning Mouth Syndrome. It was extremely painful, it felt like my mouth was literally on fire. My doctors said there was nothing to help with that. I got off the methotrexate, but the BMS lasted for another three months. The only relief for it that I had found was Orajel for mouth sores, which tasted awful and just numbs everything for a few minutes. Keeping ice or something ice cold in my mouth helped a bit, but not really practical to do throughout the day.
One thing I found just by accident was “Watermelon”. Yep, watermelon from the refrigerator. It was cool and had some soothing properties that I didn’t find in anything else. I am sorry you are going through this and if it is a side effect of any meds you might be, talk to your doctor about switching to something else. Eventually mine did subside and hasn’t been back in the last 5-6 months, but the painful memory lives on.
I hope you find some relief soon. Best wishes for happy days.
Karen
Thanks Karen for the information you provided, I have been struggling for
many years with this mouth, as well as many other issues. I have recently
had an MRI which diagnosed chronic pancreatitis, which the Dr believes is
cause by an auto immune illness (lupus, FM). I will see him again at the
end of August, and hopefully get a firm diagnosis and some treatment. It’s
been a struggle - I work FT and live 90 miles from work! 
Oh poor me,
feeling a little sorry for myself!
Thanks again for sharing your remedies - I appreciate your email.
Cathy
Hi Cathy,
I was working FT and traveling 3hrs+ a day, as well. Then last December I took a leave of absence and returned part-time in March. (I was struggling even with just the part-time). Then in May, my department said I had to go back to full-time. I struggled desperately to do this and keep my job, for the next two months. I just went back on leave in mid-July. I was told that my position would not be held for me, but they would try to find me something, once I was feeling better. I’m not sure what will happen next, but in May, I had a major flare-up and my doctors (and I have many), have still not been able to get my pain levels down again. Working FT plus the commute became impossible for me. (me feeling sorry for myself, now). But I am fighting back and making those doctors use their brains for once and figure it out. My diagnosis has been uncertain and going up and back for the last almost 2 years now.
Remember to put your health first, there is only one you. I have been working at my job for over 18 years and it’s amazing how quickly I can be replaced. So do what’s best for you, always.
Please keep in touch and let me now how everything goes.
Take care, sending gentle hugs to you!
Karen
Hello Karen:
Thank you so much for your reply Your health issues sound so similar to
mine, it’s crazy. I have been looking for the past 8 years for help with
these problems and I too have many doctors and no one has been able to
pinpoint the issue. I am now working with an internest who seems to be
putting all the puzzle pieces together. With the chronic pancreatitis,
kidney problems, burning mouth, all over body pain, swelling in my feet,
etc. he seems to believe it is auto immune and I am so hopeful that he will
have a firm diagnosis when I see him on August 29th. I am 56 years old,
very active (no one would know I am not well) I work very hard at denying
my halth issues even to myself because I don’t want to give up the fight
and I don’t want anyone feeling sorry for me. I work as an HR Director, so
am the one responsible for disability claims, etc., so am very aware of my
options. I just need to ride it out to get a definitive diagnosis which I
pray comes with some treatment.
I’m sorry your employer won’t hold your job for you (which country do you
live in) as in Canada, they can’t deny you your position back. You don’t
say if you are on disability or not, just that you aren’t working now
becaus of these issues.
Once I learn of what my issue is, I will definitely look at options longer
term regarding working/disability,
Take care, and sending well thoughts yourway that you can get your pain
level under control! I truly know how nasty that is!
Regards,
Cathy
Great question! I have burning mouth and Fibro but I also have Trigiminal Neuralgia so I’ve wondered if anything can be connected to my burning mouth. I had shingles on the left side of my mouth and it left me with the burning mouth BUT I also started with Fibro around the same time as shingles.
I fell a year ago and had. TBI(Tramatic Brain Injury) and a brain bleed, so on the days I feel like this(terrible) I never know what to blame.