WHEN production assistant Alyssa first noticed a tingling feeling in her tongue, she brushed the sensation away.
But soon it became hard to ignore and engulfed her entire mouth.
Within weeks of first experiencing the symptoms in June 2019, Alyssa was left with a ‘burning tongue’ that spread to her cheeks and gums.
The 24-year-old also had a dry mouth, sore teeth, peeling and bleeding skin, and a bizarre metallic taste in her mouth.
Now she has been left with a yellow hairy tongue and has days where the pain is unimaginable down to burning mouth syndrome.
At first she thought she may have burnt her tongue on something she had consumed.
After visiting the doctor she was told she had the rare condition which leaves sufferers with a scalding sensation.
There is no cure for the illness and she was prescribed with a special mouthwash to help soothe the pain.
But the medication didn’t work and she has been left battling the symptoms on her own.
Alyssa has now grown tired of people ‘thinking she is faking’ the condition and says she can’t even escape the pain in her dreams.
“I started questioning if life was even worth living, as I woke up in an actual nightmare.”
One of the biggest challenges for Alyssa has been her friends as she said many of them think she is over exaggerating her symptoms.
“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.
“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].”
I have difficulty swallowing and a sensitivity to food, as well as a yellow hairy tongue that comes and goes
Soon Alyssa was fearful of food and as she didn’t want to be in pain – this resulted in her losing weight.
She felt as though her best years were being stolen from her and couldn’t see a future for herself.
Since her diagnosis she has seen a number of specialists including various otolaryngologists, neurologists, allergists, immunologists and dermatologists.
In order to help determine the cause of her illness she has also had MRIs, CT scans, endoscopies and ultrasounds.
But the pain has continued and she says her symptoms have only got worse.
She said: “I have burning on my tongue, upper palate, gums and lips, as well as tooth aches and a sore throat.
What is burning mouth syndrome
Burning mouth syndrome is a condition that causes pain and discomfort in your mouth.
It is often described as a burning or tingling sensation that can spread to all parts of the mouth including the tongue and lips.
It’s an illness that is more common in women than men and is often diagnosed after the menopause.
A specific cause has not yet been pinned down for the illness – which makes treating it challenging.
What are the symptoms:
- burning on your tongue, lips, gums, palette, throat or whole mouth
- a dry mouth
- increased sensation of thirst
- change of taste in your mouth
- bitter or metallic taste
- loss of taste
- tingling or numbness in your mouth
“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.”
To try and spread awareness of the condition, she has taken to TikTok in the hope that it will help others understand.
Despite the support from her social media followers and her partner, Tommy, 25, she says she still feels alone and 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 realise 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”, she added.
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