A MUM-OF-ONE has revealed how an ear piercing triggered a reaction which left her feeling like she’s constantly on fire.
Lara Awalt, 48, is living with erythromelalgia, an ultra-rare condition that causes burning pain, redness and hot skin, most commonly in the face, feet and hands.
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For two years, Lara has been unable to leave the house and can only eat cold food because any small amount of warmth or stress causes her face to turn bright red.
Now, Lara, from South Carolina, US, is speaking out to raise awareness of erythromelalgia.
She says: “I’ve tried dozens of medications and absolutely nothing helps.
“I’m at a complete loss.”
Read more on skin conditions
In April 2022, Lara had a cartilage piercing in her right ear.
Two days later, her ear became red, warm to touch, and swollen.
Lara explains: “I thought it could be infected, so I went to an emergency clinic.
“But doctors told me that it wasn’t infected.”
Over the following days, the redness spread to Lara’s cheek and after two weeks, it covered her whole face, neck and left ear.
Lara says: “The pain was excruciating.
“I felt like I was on fire like I had my face in front of an oven.”
Lara visited her GP, where she was prescribed steroid cream.
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But it only made her symptoms worse, so she returned to her doctor.
There, she underwent blood and urine tests for illnesses that could cause inflammation, such as cancers and blood disorders.
But all the results came back negative.
Eventually, she was referred to a private dermatologist, who gave her multiple antibiotics and topical treatments to try, but nothing helped.
During the winter, I walked around the house in a T-shirt, shorts and no socks, because any small amount of warmth from central heating would cause a flare up
Lara Awalt
Doctors took a biopsy of Lara’s face and the results concluded that she may have rosacea, a long-term skin condition that affects the face.
Lara explains: “I was prescribed an antibiotic, which helped at first, but my symptoms quickly returned.
“My reaction then started to affect my feet and hands too.
“It felt like I had pins and needles constantly.”
Months passed and doctors were completely baffled by Lara’s condition.
By this time, she had to stay indoors and was only able to leave the house for doctor’s appointments.
DOCTORS BAFFLED
In September 2022, Lara was referred to a dermatologist at Medical University of South Carolina.
Lara says: “The doctor saw my face and immediately rejected rosacea.
“After examining me, he told me that I had erythromelalgia.
“I couldn’t believe that I’d developed such a rare disease.”
Despite the diagnosis, doctors were only able to offer Lara a list of drugs, including blood pressure medicines, anti-depressants and anti-seizure medicines.
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Lara says: “Absolutely nothing helped.
“The only thing I could do was keep a fan and icepack on my body constantly.
“During the winter, I walked around the house in a T-shirt, shorts and no socks, because any small amount of warmth from central heating would cause a flare-up.”
But because of this, in January 2023, Lara was admitted to Prisma Health Oconee Memorial Hospital in South Carolina with hypothermia and hallucinations.
She explains: “Doctors told me they needed to warm me up, but I was terrified of burning alive. As expected, I had a horrible reaction.
“After five days, I was discharged and prescribed an antibiotic which helped get my flare-ups under control.”
In May, Lara was referred to another doctor, who specialises in erythromelalgia.
What is erythromelalgia?
Erythromelalgia is a rare condition that causes burning pain, redness and hot skin, mainly in the feet.
It can be constant or come and go, but treatment and avoiding triggers can help.
The main symptoms are:
- Burning pain, which often starts as itching
- Redness – this can look different on brown or black skin
- Warm or hot skin
Other symptoms include:
- Swelling
- Sweating more than normal
The pain can either be constant or come and go.
When the pain comes, it might be called a flare-up.
A flare-up can come on gradually or suddenly, and last anywhere from a few minutes to a few days.
Your skin may feel cold after a flare-up and look blue or grey.
It’s often not clear what causes erythromelalgia.
Sometimes it’s caused by another condition or a faulty gene inherited from one of your parents.
After blood and visual testing, she discovered that she had chronic inflammatory response syndrome (CIRS), an illness caused by exposure to biotoxins, such as mould, which triggered the erythromelalgia reaction when she had her ear pierced.
Lara says: “To have any chance of getting better, I needed to be in a clean environment.
“My house was gutted, which revealed mould in my basement and dry walls.
“For 10 months, I lived with my parents, while my house was remediated.”
Despite this, Lara still gets flare-ups every day.
She can only eat cold food, such as salad, watermelon and potatoes, and is confined to the house.
Lara says: “It’s so demoralising.
“I’m undertaking drug trials and hope that one day, there will be a breakthrough.”
What is chronic inflammation syndrome ? And how to treat it
Chronic inflammatory response syndrome (CIRS) is a biotoxin illness triggered by exposure to mould.
People with the condition have genes which put them at risk of developing CIRS if brought into contact with mould.
The illness can affect virtually any organ in the body and if left untreated can become debilitating.
Symptoms include:
- Fibromyalgia
- Chronic pain
- Trouble concentrating
- Visual insensitivity
Patients with CIRS are often misdiagnosed as having depression, anxiety, and post-traumatic stress disorder.
CIRS cannot be cured completely, however, removing the person from exposure to the biotoxins, including moving house or replacing possessions, can help eliminate the root cause.
Credit: MedicineNet and the Virgina Centre for Health & Wellness
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