At first, Alyssa (24) did not notice anything more than a bit of tickling on the tip of her tongue.
It was the summer of 2019, and the young American woman worked as a production assistant in the state of New York in the USA.
– Stood in full fire
Alyssa does not want to share her last name, but she has agreed that her story will be shared, according to the news agency Jam Press.
To begin with, the 24-year-old does not leave much in the tickling feeling. But then it began to spread to the whole mouth.
Should only “treat hemorrhoids”
Within a few weeks, Alyssa’s tongue turned bright red, and she felt a burning sensation that had spread to her gums and cheeks.
– I remember how strange people looked at me, when I told them that it felt like my tongue was in full swing, says Alyssa to Jam Press.
– A real nightmare
In addition, Alyssa experienced symptoms such as dry mouth, sore teeth, bleeding skin that loosened and a strange metallic taste in the mouth.
– The pain never went away, and there was nothing that helped. I could not escape the pain, not even in dreams. I began to doubt whether life was worth living, for I woke up to a real nightmare.
At first, the 24-year-old thought she had just burned herself on something hot.
BURNING TONGUE: Alyssa says that she has days where the pain becomes unmanageable. Here she has symptoms of a fungal infection. Photo: Jam Press
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However, after consulting a doctor, she was diagnosed with the rare condition “burning mouth syndrome”.
“Burning mouth syndrome” or burning mouth syndrome in English, describes according to Lommelegen a chronic burning sensation in the mouth, without a definite cause for this.
The words that broke my mother’s heart
– You experience a hot, sore or burning sensation in the mouth that is localized to the oral mucosa – almost as if the mouth has been burned with too hot a drink, the website writes.
There is no cure
According to Lommelegen, there is no cure for the condition. There are also no good treatment options with a documented effect on the course of the condition, according to the website.
– The goal of treating the condition is to reduce the symptoms, they write.
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None of the medications Alyssa tried worked, and she had to deal with the painful symptoms on her own. She says that the constant pain causes her to become irritated and struggle with her mental health.
Moaned as they looked under the wig
– My quality of life is poor, and I do not have as much patience as I once had. Relationships become incredibly difficult to handle, she says.
The 24-year-old says that she was also diagnosed with Borderline Personality Disorder (BPD) a year after the diagnosis of tongue syndrome.
Afraid of food
Gradually, she also became afraid of food, as she feared that the food would aggravate the pain. That is why she has lost weight, she says.
YELLOW AND HAIRY: Alyssa says that her tongue can suddenly turn yellow and hairy – and she has trouble swallowing. Photo: Jam Press
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She began to feel hopeless, unable to see any future for herself and believes that “she has been deprived of her best years”.
In recent years, Alyssa has been to a number of experts in the hope of getting help with the problem. But neither ear-nose-throat experts, neurologists, allergy experts, immunologists or dermatologists have been able to help.
Biological father of 47 children
The 24-year-old has undergone a number of examinations, such as MRI examinations and CT scans, endoscopy and ultrasound.
Yellow and hairy
Despite all this, the symptoms have only gotten worse.
– It burns on my tongue, in the palate of my gums and lips, in addition to the fact that I struggle with toothache and sore throat, she says, and elaborates:
INVESTIGATIONS: In recent years, Alyssa has been in and out of hospital, hoping to find something that can help with the pain. Photo: Jam Press
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– I have problems swallowing, and am sensitive when it comes to food. My tongue can suddenly turn yellow and hairy – it comes and goes.
Alyssa says that she mostly manages to handle the pain, but that she still has days where the condition becomes unmanageable.
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– When it comes to chronic pain, I have found that the only thing you can control is how you react to it. The best treatment is to find a distraction or try to relax when the pain subsides.
Looking for answers
The 24-year-old swears that she will try new solutions and look for answers, until she manages to find the cause of the burning sensation.
– Everything I do now, I do considering my condition. Being strong is no longer a choice, and I have never experienced that before, she says.
Alarms about missing 14-year-old
Although she is still struggling with the symptoms, Alyssa is looking brighter on life now. She believes it “had to be a tragedy for her to realize what kind of gift life really is”.
– I still mourn my old painless self. Everyone deserves a pain-free life, even if you have to fight for it. I am so proud of how far I have come, and I do not intend to look back, she says.
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