Burning Mouth Syndrome

Hi, my name is Tgandrews. I've been diagnosed with

#Anxiety #Depression #Fibromyalgia #BurningMouthSyndrome

Arthritis, tendonitis, chronic fatigue syndrome, colitis, burning mouth syndrome and other symptoms that haven't even been diagnosed yet. I have monthly infusions of medication to suppress my immune system from attacking my body but nothing is in remission.

I have had BMS since 2018. Over the past two weeks it became unbearable; like fiberglass in my mouth & down my throat. Overall, I made 30+ changes in my life over the past couple weeks to calm the pain as I wasn’t sleeping or eating much (lost 5 lbs). QOL was very poor. Here is a list. ** means I think they were the most beneficial for ME.
I am in close contact with my PCP.

Burning mouth syndrome - fiberglass in mouth/ throat
Changes to improve sleep

**1.) Added CBD capsules/ gummies - CBD has anti-inflammatory properties
**2.) Added trazodone 50mg then 25mg (experimenting to find lowest effective dose)
**3.) Ear plugs
**4.) Close windows/ air quality/ comfortable room temp
**5.) No TV - for weeks (I have TBI)
**6.) Minimal screens- phone hours before bed
7.) Finch app
**8.) Belly breathing during day/ at night
9.) Calm time hours before bed- vagus nerve stimulation (YouTube videos/ massage ear, throat, etc)
**10.) Tea before bed - chamomile/ MudWTR/ Ginger w/ honey& lemon
**11.) Decreased fluid intake significantly starting around 4 pm -6 pm (except 1 glass tea) so not waking up to pee
12.) decreased basal rates (less chance of alarms- I have Type 1 Diabetes)
******13.) Oxyfresh Premium Pro Relief Dental Gel with Zinc –Infused with Aloe Vera, Chamomile and xylitol
******14.) dry mouth Xylimelts
15.) stopped 50% meds/ supplements in case some weird toxicity/ sensitivity . I am a pharmacist so I felt comfortable. Do NOT do this without talking to Healthcare professional!
16.) stopped Symbicort in case of thrush. Again, speak to PCP
17.) added creatine to coffee - I have TBI so it may help decrease overall body/ brain inflammation
18.) added molasses to coffee in case low iron
**19.) added ALA 600mg / Tumeric capsules back in .
20.) decreased SSRI by 50% to decrease dry mouth (again talk to PCP)
21.) magic mouthwash compound
**22.) (stopped eating because of mouth pain lost 5 lbs) So started Ayurvedic cleanse- made Kitchari . Basmati rice, yellow mung beans, & kitchari spice.
**23.). Positive thinking/ gratitude journal/ self love.
**24.) rest!!! Calm activities
**25.) lots of lemon/ honey in warm water sipped throughout the day
26.) leisurely walks at night while drinking bedtime tea
**27.) cold cubed watermelon daytime
**28.) hacky sack held in hand at night for stress relief
29.) gave up coffee (take time released caffeine capsule). Added Teccino Dandelion herbal tea coffee alternative
30.) stopped maca powder in oatmeal as part of detox
31.) warm water first thing in AM to wake up digestive system
32.) added 1 tsp apple cider vinegar to warm water (supposedly reduces blood sugar). work up to 1 TBSP
**33.) gabapentin 300mg then 100mg. Then 200mg for nerve pain. (Experimenting to find lowest effective dose)
34.) baking soda/ water rinse

I have tried clonazepam susp in past and feels good while it’s in my mouth, but didn’t last too long. I have ordered organic cayenne extract but it’s not here yet. Please don’t give up! Keep trying things until you find something that works!! 💕

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.

#BurningMouthSyndrome

#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

#Lupus