Disturbing photos reveal woman’s painful rare condition: 'Actual nightmare'

·4-min read

A woman has spoken about her traumatic ordeal of being diagnosed with burning mouth syndrome, which has left her with a yellow hairy tongue and bleeding skin.

Alyssa, a production assistant, 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 from New York, US, 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.

Alyssa is often left with a painful furry tongue. Source: Jam Press
Alyssa is often left with a painful furry tongue. Source: Jam Press

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.

Burning mouth syndrome 'an actual nightmare'

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.

“[They] thought I was dramatic or exaggerating," she said.

Alyssa says people don't quite understand how painful her rare condition is. Source: Jam Press
Alyssa says people don't quite understand how painful her rare condition is. Source: Jam Press

"I began to feel like a burden. I felt misunderstood and still do, as only those [with this syndrome] truly know how agonising this is."

“Being in pain all the time causes me to become irritable and I really struggle with my mental health."

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".

Doctors fail to stem the pain

The past few years have seen Alyssa seeing a myriad of experts including various otolaryngologists, neurologists, allergists, immunologists and dermatologists.

Alyssa has a range of symptoms in her mouth that affect her. Source: Jam Press
Alyssa has a range of symptoms in her mouth that affect her. Source: Jam Press

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.

“I have burning on my tongue, upper palate, gums and lips, as well as tooth aches and a sore throat," she said.

“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."

“I plan to continue trying new things and search for answers, until I can find the cause of the burning.”

Rare condition rakes in millions of views on TikTok

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.

Despite the support online and from her partner, Tommy 25, says she still feels very alone in her battle.

“I don’t discuss [this] with many people, because it's so misunderstood," she said.

“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.

"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."

- Jam Press/ Australscope

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