A mum whose jaw only opens 14mm after decades of pain says she is deteriorating as the NHS ‘continues to ignore’ her

A mother who has endured decades of excruciating jaw pain and can now only open her mouth 14mm wide has said she is “deteriorating in front of a system that continues to ignore” her.

Naomi Smith, 47, from Gloucestershire, said she began suffering from jaw pain and teeth grinding at 18, and over the years the pain became “unbearable”.

By 2014, she said the pain had become so severe she could barely eat or drink, and the discomfort spread throughout her body, causing her to vomit up to 30 times a day.

Despite “endless” hospital appointments and diagnoses ranging from fibromyalgia to functional bowel disease, Naomi claims her condition continued to deteriorate.

Naomi said the worsening pain forced her to leave her job as a children’s social, emotional and mental health tutor in 2024, and she now suffers constant facial pain, migraines, dizziness, and nausea, with a jaw that can open only 14mm and a mouth that droops by early afternoon.

Finally diagnosed in 2025 with severe temporomandibular joint disorder and severe jaw arthritis, Naomi’s partner, Darryl Brooks, a 52-year-old painter and decorator, is raising funds for her to have “life-changing” jaw-replacement surgery.

Naomi, a mother-of-four, told PA Real Life: “(I saw) a nurse once write in my medical notes at Gloucester Royal Hospital, in 2019, that I looked like someone dying of end-stage cancer.

“That is how this feels – I am deteriorating in front of a system that continues to ignore me.

“My children have had to watch me disappear in front of their eyes and decline physically and mentally.

“I am exhausted, starving, and desperate for a chance at life without pain.

“It feels like life or death now – and I don’t want anyone else to go through what I have.”

At age 18, in 1996, Naomi said she began experiencing teeth grinding and jaw pain, so her dentist prescribed a mouthguard.

But over the years, the pain in her jaw became “unbearable”.

By 2014, Naomi said it had grown so severe that she could barely eat or drink, and the pain spread throughout her body, leaving her “weak and exhausted”.

As her condition declined, she claims she rapidly lost three stone over a few months, was vomiting up to 30 times a day due to the pain, and developed severe constipation as a side effect of her pain relief medication.

Naomi said she explained this to her GP in 2015 and said she was referred to “countless” hospital departments, including gastroenterology and rheumatology, across Gloucestershire Royal Hospital and Cheltenham General Hospital.

Throughout this period, she was told she might have a functional bowel disorder – which can cause constipation, stool leakage, or an urgent need to use the toilet.

She was also told she may have fibromyalgia – a long-term condition that causes widespread pain throughout the body – or osteoarthritis, a condition that makes joints painful and stiff.

Over the following years, Naomi said her pain and exhaustion continued to worsen despite “endless” hospital appointments.

In 2020, she was referred to Gloucestershire Royal Hospital’s Medically Unexplained Symptoms Clinic, where she said fibromyalgia was again suggested.

By then, the pain had become “so bad” that she was forced to rely on a liquid diet, which she said left her “so weak” that she could barely lift a shopping basket.

Naomi disagreed with each diagnosis, believing her jaw pain was being ignored, and she described the process of trying to get a diagnosis as “awful”.

She said: “I kept thinking they had the answer, and then they’d tell me I wasn’t feeling what I was feeling.

“They just say it’s fibromyalgia, which it could be, but that doesn’t really explain my jaw pain.”

In April 2019, Naomi said she was hospitalised at Gloucestershire Royal Hospital with a bowel blockage and malnutrition.

She said these complications were caused by her liquid diet and taking pain medication – such as co-codamol and tramadol – for a long period.

She claims that one member of medical staff at the hospital told her she was a “hysterical female” and that her symptoms were “all in (her) head”.

Over the next few years, Naomi said her pain continued to worsen despite repeated appointments.

Naomi claims the pain and exhaustion forced her to leave her job as a children’s social, emotional and mental health tutor in 2024.

She said: “It just got impossible. I’m absolutely devastated – if you’re not contributing to society, it just makes you feel invisible and sad.”

Her partner, Darryl, has become the sole earner and now looks after her as best he can.

“Obviously, it’s horrible,” Darryl said.

“It becomes hard for both of us – you don’t want to see your partner suffering and struggling, do you?

“So I’m doing all I can to make it as easy as possible, but I’m not bringing in a massive wage and it’s not easy at all.”

Since then, Naomi said she has spent thousands of pounds on private treatments – including Botox, chiropractic care, osteopathy, healing sessions, and acupuncture – but said nothing has helped.

She now takes tramadol, diazepam, and zopiclone to manage her pain, muscle tightness, and insomnia.

Her jaw can only open 14mm, which is too small to fit even a 5p coin, as the coin is 18mm in diameter.

By early afternoon, the left side of her face begins to droop, making it difficult to speak.

Naomi added that she lives with constant facial pain, migraines, dizziness, and nausea, and remains dependent on a liquid diet because of the pain caused by chewing.

By 2025, Naomi said she was finally diagnosed with temporomandibular joint disorder, a condition that affects jaw movement, along with condylar damage, which involves injury to the rounded parts of the jawbone, and severe arthritis in her jaw.

She said her doctor at Cheltenham General Hospital concluded that she had “probably had temporomandibular joint disorder all her life”, noting that it can be very difficult to diagnose.

Naomi said her doctors now believe that her temporomandibular joint disorder may have triggered years of secondary complications and chronic pain across her body.

Despite the diagnosis, Naomi said she is still waiting to be added to the NHS surgery list for an arthroscopy – a keyhole procedure used to repair joints.

However, she said she has been told the wait for surgery itself could take up to four years.

Naomi claims she has contacted Gloucestershire Royal Hospital and Cheltenham General Hospital over the years, complaining of her treatment, but has never received a response.

Naomi now hopes to undergo a private bilateral jaw replacement – a complex operation that involves replacing the joints between the lower jaw and the base of the skull.

To help cover the cost of private surgery, travel, and her loss of earnings, Darryl has set up a GoFundMe page with a target of £95,000, having raised just £140 at the time of publication.

A spokesperson from Gloucestershire Hospitals NHS Foundation Trust said: “We are very sorry to hear about the pain that Ms Smith continues to experience and the challenges in getting a diagnosis sooner.

“Ms Smith’s case is being taken seriously and we are supporting her to ensure she receives the best care possible.

“She continues to be supported by our senior consultants and there is a planned schedule of appointments with a number of specialty services before the end of the year.

“These are part of a coordinated effort to explore all possible avenues to alleviate her symptoms and improve her quality of life.

“We are aware that Ms Smith is in contact with our specialist Patient Advice and Liaison (PALS) team and we continue to work with her to address the concerns she has shared.”

To donate to Naomi and Darryl’s fundraiser, visit: www.gofundme.com/f/surgery-for-tmj-disorder-jaw-replacement.