Is all about or how I got it, if that is what it is. I just know that’s the way I describe it as my mouth being sore and like burning feeling. I do have flare ups of thrush in my mouth and my dr calls me in a liquid prescription equivalent to a topical nystatin to swish and then swallow.
I also have metallic tastes in my mouth a lot of times. Any suggestions why this keeps reoccurring?
#BurningMouthSyndrome
Just found this forum and am so happy to see I’m not crazy and alone. I recently turned 50 and in addition to all the hormonal changes, central hypothyroidism (pituitary malfunction), IBS, anxiety and depression, I have now been dealing with this horrendous and painful condition that honestly blows the others away. After a year of tests to rule out everything else, I’m finally seeing a specialist at Cleveland Clinic next month who has experience with BMS and can hopefully help me find a way to manage the pain. I’ve tried the magic mouthwash, Alpha Lipoic Acid and most recently Nervive at night with little relief but I am now shifting my focus to learn how to live with this (without losing my husband). Thank you all for sharing your stories and hang in there. We can do hard things. ♥️
I have a quick question for everyone with Fibro. I have been having an odd symptom for a few months now... Has anyone else ever had burning mouth syndrome? It seems like no matter what I eat anymore it causes a burning sensation in my mouth and my tongue. I'm realitively new to all this having only been diagnosed about a year ago... any advice would be much appreciated.
#RareDisease # oral lichen planus# burning mouth syndrome diet #
I believe I have CIPD. Unfortunately, I’m currently dependent on a GP for specialist referrals. I insisted on seeing a Neuromuscular specialist - the guy made an appointment 4 months away(!). I have severe pain 95% of my time - there’s no way I can wait!
2 issues: how do I educate this guy about rare disorders? And is that what he went to med school for?
-and-
I’ve read that it’s critical to get early treatment in order to avoid permanent disability. This GP is acting as a human hurdle to treatment. If indeed it is CIPD, isn’t the guy somehow culpable for wasting time, thus contributing to the deterioration of my health?
I have diagnoses of Ehlers-Danlos Syndrome, Fibromyalgia, ME/CFS, Burning Mouth Syndrome, IBS, Hypothyroidism, Severe Degenerative Disc Disease, and unattributed neuropathy, tinnitus and heliotrope rashes.
Any wisdom/thoughts you may have are appreciated. Sending good energy to you.
#ChronicInflammatoryDemyelinatingPolyneuropathy
#ChronicInflammatoryDemyelinatingPolyradiculoneuropathy
#GuillainBarreSyndrome
#NeurologicalDisorder
#BurningMouthSyndrome
#Undiagnosed
#UndiagnosedDiseaseNetwork
#UndiagnosedRareDisease
#RareDiseaseDay
Has anyone ever heard of this condition? I thought I was having dry mouth due to my meds but now they’re thinking I may have this. I’ve never heard of this before.
I just need to vent. I am so overwhelmed lately. I have been in a really bad place since January, but the truth is that it all started long before that. Just certain things escalated it over the past year.
My anxiety/panic episodes have been really tough. I'm on meds but I struggle when depressed to remember to take them consistently which I know doesn't help.
I've been dealing with a slew of mystery symptoms. The worst is my tongue will start burning ( fits with #BurningMouthSyndrome symptoms . I had thought maybe #sjogrens - as I have other symptoms that fit that condition. But naturally when you want test results to give you answers, they come back "normal," and my rheumatoid panel and ANA were all normal. So my doctor is sending me to an ENT and honestly, I expect it to be a waste of time. But I've had about seven of these flares now, with the longest one lasted three weeks, since late September.
It has affected my sense of taste. Water tastes like soap. I was already having issues with water because I had gastric sleeve surgery last March ( 2018 and couldn't tolerate plain water but now it tasting like soap makes things even worse. Something as basic as brushing my teeth has become a nightmare. When I am dealing with bouts of #ClinicalDepression I find basic self-care (like oral hygiene) challenging enough. When my mouth hurts so much it keeps me awake (because I needed something else to fuck up my sleep) the last thing I want to do is brush my teeth. Add in that using mint flavored toothpaste became a problem when I could no longer drink plain water (I drink Crystal Light now - and I only like one flavor) because it means that drinking tastes bad... it's a clusterfuck. I finally was able to go to the dentist last week and I don't have any new decay but they warned me I have demineralization of multiple teeth. I also have several older fillings that I need replaced.
I have not been a very present friend. I find I want to be alone most of the time. Unlike past bouts of depression where that was a side effect, this time it's different. This time the isolation is something I actually feel like I need. I just do not have it in me to be the typical supportive, present friend I normally am - and I hate that because I don't want people to think I don't care about them or their problems. Which is part of the need for isolation. I barely have the psychic energy to handle my own shit right now, and I know I don't have it in me to help anyone else through theirs. That makes me feel selfish, but I think part of me withdrawing from my friends is to not be dumping MY stuff on them constantly when I can't support them in kind.
My husband is the only person I really want to interact with daily, and fortunately for me, he's very supportive and he's being patient through all of this. But I even feel badly for him and keep thinking he's going to reach a "limit" of some kind where he's had enough. That's the anxiety talking and I know it.
Your tongue randomly feels as though it's been scalded by hot tea and it hasn't My guess is #BurningMouthSyndrome but it's only my guess. My doctor had said I had thrush but I've seen thrush and I don't think there's any evidence of thrush looking at it. But regardless of the cause, it's excruciating and frustrating.
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