I was malnourished from invisible condition that ‘set my mouth on fire’ – even doctors don’t understand it

SCOFF something too hot or spicy and your tongue may seem like it’s on fire.

But for people with a little-known yet debilitating condition, their mouths feel like they are CONSTANTLY burning, whether or not they are eating.

Meeting friends for coffee and cake last week, Joan Cairns, 73, from Edinburgh, had to swiftly make her excuses and leave.

She tells Sun Health: “I just had to. I couldn’t stand the agony — but I also knew if I said what I was feeling, not everyone would understand.”

Joan spends most days in excruciating pain yet her condition — burning mouth syndrome, or burning mouth disorder — is not visible and is little understood.

Sun doctor Zoe Williams has received lots of reader questions about it in recent months and it is about time it was put in the spotlight.

BMD is estimated to affect up to 4.5 per cent of us.

Retired administrator Joan was diagnosed eight years ago and the condition has had a huge impact.

She says: “Not a day goes by that I’m not in pain.”

Professor Tara Renton, an oral surgery expert at King’s College London, says BMD has no known cause but adds: “We increasingly believe it’s neuropathic pain, to do with the nerves and brain receptors rather than the mouth itself.”

Diagnosis can take a while.

Prof Renton explains: “Clinicians have to rule out fungal infections, lesions, vitamin deficiencies, anaemia, diabetes, auto-immune diseases and hypo-thyroidism, and some medications can cause symptoms like those of BMD.”

‘Can’t even speak’

For another BMD sufferer, Sarah, 67, from Berkshire, life has completely changed since being diagnosed at the start of the year.

She says: “I waited a year to see a specialist, before I was diagnosed and told there was no cure.

“My mouth burns and stings every day, from morning to night. It affects my tongue, gums, teeth and lips on the left side. The nerves in my tongue quiver constantly.

“I initially visited the GP because I lost so much weight. I could hardly eat with the pain. He said I was malnourished and sent me off with a factsheet about eating.

“Before this happened I was super-healthy and fit. Now I’m managing to keep my weight stable at 8st on a diet of soaked oats, stewed fruit, chicken and vegetable soup, eggs, fish and mashed vegetables.

“I have seen numerous therapists — homeopaths, an acupuncturist and a hypnotherapist.

"Nothing makes any difference. I have a very supportive dentist who is trying laser therapy but so far no difference.

“I try to distract myself but the pain is always there. If I talk for too long, I can’t speak for a couple of days. Sometimes my speech doesn’t sound right. My tongue feels puffy and catches on my teeth.

“Most people look at you as though you have two heads when you try to explain it to them. No one has heard of it. Friends and family try but they don’t really get it.

“I’m in a Facebook group for people who live with it and one passed away at the weekend. It looks as though she could no longer live with the pain.”

For Prof Renton, Sarah’s story is all too familiar.

She says: “I work with psychologists to treat these patients because it really can be debilitating. Most patients have a pain level of around six, seven or eight out of ten, constantly.

“They eat porridge, bland foods and sometimes can’t even speak, the pain is so bad.

“Mental health implications can be severe. We have just completed an imaging study of people with BMD and we know there’s abnormal central brain activity.

“While currently we treat the condition topically, locally or with pain relievers and anti-depressants, that may work for some people, knowing what causes it and where in the brain it comes from means we can work on treatments to stop it.

“There is increasing evidence for topical clonaze­pam (antiepileptic medic­ation), and some patients say topical CBD oil helps.”

But for Joan, everything has changed since her diagnosis.

She says: “I used to sing in a choir, which I loved, but now even talking can be painful.

“The chronic pain is like nothing else but I refuse to give in.

“My mental health really suffered the first four years after I was diagnosed. I would cry and get so upset. I felt so helpless.

“I go out now knowing I’ll pay for it later. It’s tough because people say I look fine — but they can’t understand just how debilitating constant pain, especially in your mouth, can be.

“It’s spread to my lips in the past and it just feels like everything is on fire. I wouldn’t wish it on anyone.”

Sarah believes more needs to be done in the search for adequate treatment and a cure.

She says: “There are thousands of people in the Facebook group I’m on. Most have been let down by doctors, dentists and specialists and lots feel medical teams don’t care.

"Lots are sent away with repeat prescriptions for drugs with side-effects, which often don’t work.”

Prof Renton says more is being done but she suspects there are many people with undiagnosed BMD.

She says: “It’s not covered in medical school but dentists will be aware of it.

"As with any chronic pain condition, onset can be related to bereavement, divorce or a life-changing event, rather than injury or something happening to the mouth itself.

"We also know between three and nine per cent of post-menopausal women have BMD, as decreased oes­trogen levels can cause chronic pain.

“The first port of call for help tends to be GPs, but it’s not really their domain.

"Dentists look at the lining of the mouth and, while it can present alongside ‘geographic tongue’ — when pale patches appear — generally there won’t be any visible trauma. If the mouth’s lining is inflamed or infected, it’s probably not BMD.”

Dr Zoe adds that avoiding spicy, acidic foods and alcohol can help, as can Difflam spray, HRT and medications for chronic neuropathic pain.

She says: “It is very important to realise how stress affects symptoms and to manage it. Relaxation, yoga and meditation can all help.”