A woman has spoken about her traumatic ordeal of being diagnosed with burning mouth syndrome, a rare disorder that's left her with a hairy yellow tongue and bleeding skin.
Alyssa, a production assistant from Upstate New York, US, first started noticing a slight tingling sensation on the tip of her tongue in June 2019.
She brushed it off but soon the sensation began spreading across her entire mouth and became hard to ignore.
Within weeks, the 24-year-old recalls her tongue ‘burning’ and appearing bright red, with the feeling spreading to her gums and cheeks.
Alyssa also started experiencing dry mouth, sore teeth, peeling and bleeding skin, and a bizarre metallic taste in her mouth – leaving her feeling distressed.
It was first thought she had "burned" her tongue but after consulting a doctor, she was diagnosed with burning mouth syndrome.
Burning mouth syndrome is a rare condition which causes pain and discomfort on the mouth, lips and tongue, that's similar to a 'scalding' sensation.
An oral medicine specialist informed Alyssa that there was no cure, but prescribed compound clonazepam mouthwash, which is made specifically for burning mouth syndrome, and she was later prescribed Gabapentin by another doctor.
Unfortunately she says the medication didn't work and she was left dealing with the painful symptoms on her own.
“I still remember the odd faces I received when I told people my tongue felt like it was on fire,” Alyssa told Jam Press. “The pain never let up and nothing brought relief – I couldn’t escape it, not even in my dreams.
“I started questioning if life was even worth living, as I woke up in an actual nightmare."
For Alyssa, one of the biggest challenges has been losing her friends as she claims many of them "misunderstood" her pain.
She said: “[They] thought I was dramatic or exaggerating. I began to feel like a burden. I felt misunderstood and still do, as only those [with this syndrome] truly know how agonizing this is.
“My quality of life is tough and I don’t have as much patience as I once did, where relationships become incredibly difficult to navigate. Being in pain all the time causes me to become irritable and I really struggle with my mental health.
“I was diagnosed with Borderline Personality Disorder (BPD) a year after my syndrome started, which doctors believe is the main cause [of this].”
Alyssa gradually also became fearful of food as she was afraid of the pain this would cause her and, as a result, she rapidly lost weight.
She began feeling hopeless, couldn’t see a future for herself and says that her "best years were being stolen".
The past few years have seen Alyssa seeing a myriad of experts including various otolaryngologists, neurologists, allergists, immunologists and dermatologists.
She has undergone multiple procedures such as MRIs, CT scans, endoscopies and ultrasounds to help determine the cause. Despite this, the pain has continued and her symptoms have worsened.
She said: “I have burning on my tongue, upper palate, gums and lips, as well as tooth aches and a sore throat.
“I have difficulty swallowing and a sensitivity to food, as well as a yellow hairy tongue that comes and goes – every day is a little different. Most days I’m able to overcome the pain, but I still have days where this is unmanageable as it’s completely unpredictable.
“I’ve found that when it comes to chronic pain, the only thing you can control is how you react to it and the best treatment is distraction or I try to relax when the pain really gets to me.
“Everything I do now, I do with my illness in mind and being strong is no longer a choice, which is something I hadn’t experienced before. I plan to continue trying new things and search for answers, until I can find the cause of the burning.”
Alyssa recently decided to upload her ordeal to TikTok, as she wanted to spread awareness and find others who were suffering like her.
Her various clips have racked up millions of views, with many people offering suggestions on how to cope with the pain. Or possible causes/treatments. Despite the support online and from her partner, Tommy 25, she still feels very alone in her battle.
Alyssa added: “I don’t discuss [this] with many people, because it's so misunderstood. I’m tired of people believing that I’m faking this and the doubt is something I can’t handle on top of the pain.
“I’m able to cope with the pain much better now, but I’m not sure if I have a higher tolerance or if my symptoms have evolved to be less painful. I still grieve for my past pain free self – but it’s taken a tragedy for me to realize what a gift life really is.
"Everyone deserves a pain free life, even if you have to fight for it. I'm so proud of how far I've come, and I don't plan on looking back."
