Life? Sometimes it is a chronic pain in the butt

Today marks the start of National Pain Week. Jessica Staveley
shares her experience of chronic pain
to help increase understanding
of a problem affecting one in five Australians.

We like to think life without pain is the norm. So much so that most of us pop a pill at the first sign of a minor twinge or headache.

But imagine living every day suffering from unrelenting pain. Not fun. You’d regard that as a total PITA.  But the sad fact is one in five Australians suffer from some degree of chronic pain. A chronic pain or illness is one that is unresponsive to treatment. It can be mild or incapacitating, but is characterised by the fact it is virtually always present. And all too often it is an invisible illness that provokes misunderstanding – “You don’t look ill!” – and antagonism.

National Pain Week is promoted by Chronic Pain Australia to destigmatise the experience of living with invisible illness and chronic pain and promote the vision that no Australian should suffer without access to treatment. It aims to explain chronic pain to the Australian public and reduce the isolation and suffering of people in pain.

Sufferers include those with endometriosis, fibromyalgia, irritable bowel syndrome, arthritis, migraines and many more. You almost certainly know someone who is a victim. Jessica suffers from temporomandibular joint disorder (TMJD) and the chronic migraines it causes. This is her story:

In 2014, the stress of the High School Certificate (HSC) was hammering me physically and psychologically. I was a nervous wreck and my body bore the brunt of my anxiety. During the day, I was clenching my teeth, causing head-splitting migraines and throbbing facial pain. Nights were little better: the grinding of teeth was audible from the next room.

Eventually, it got to the point that my jaw physically locked shut. The most it would open was two centimetres. It was painful to talk and eating became a challenge.

It took months of appointments with doctors, a chiropractor, a physiotherapist and a dentist to even get a diagnosis, and thousands of dollars to get the jaw functioning normally again.

What is TMJD?

It’s a painful, compromised movement of the jaw joint. The temporomandibular joint is the “ball and socket” that connects the jaw to the temporal bones of the skull, allowing you to talk and eat.

Place your fingers on your upper jaw, just in front of your ears – as you open your mouth wide, you will feel the joints working and moving. In the case of TMJD that motion is abnormal. The teeth are misaligned, causing strain during everyday jaw movements like eating, speaking, smiling, sneezing and swallowing.

Illustration for Jess Staveley's story of temporomandibular joint disorder. National Pain Week. 24 july 2017.

The misalignment of teeth (technically “malocclusion”) and/or teeth grinding and jaw-clenching (bruxism) typically lead to TMJD, however other causes can include emotional stress, muscle overuse and arthritis.

Queensland dentist Dr Anne-Maree Cole describes TMJD as a painful conglomerate of multiple symptoms including headaches, neck pain, facial pain, clicking or noise in the jaw joints, congestion, pain in the ear, dizziness and clenching or grinding of the teeth.

“The pain is recurrent and debilitating and it profoundly impacts the sufferer’s quality of life. Depression, irritability, difficulty concentrating and unrefreshing sleep are commonly encountered as well,” she told Hatch.

While trying to find a solution for TMJD, it quickly became apparent that few professionals understood the problem. Essentially, I had to look for the answers myself.

The options for relieving pain were varied and expensive. Some work, others don’t.

And suddenly, every acquaintance became an expert on the disease of which they’d never heard, offering their 2 cents worth on what “miracle treatment” I should try. Turns out it is a common experience among chronic pain sufferers.

People told me to stop eating meat. Stop eating gluten. Quit sugar. Get Botox. Exercise more. Take more time off work. Smoke weed. Try acupuncture. Let God heal me in church.

While researching this report I made contact with sufferers around the world. I have included comments from some of them. Though many men suffer from the problem, only women agreed to share their stories.

Kathy Simpson’s story

Kathy, a 36-year-old teacher in Peterborough, England, has suffered from TMJD for over 10 years. Two years ago she was competing in triathlons; now, she struggles to ride a bike down the road. She has had her temporomandibular joint surgically repositioned but continues to suffer severe dizziness and daily headaches.

“I have to pace myself. It’s just frustrating because no one understands. You tell people that you have TMJD and they turn around and say, ‘yeah, my jaw clicks sometimes’ as if they have the same condition as you. They really have no idea.”

Treating TMJD

Of the many treatments I currently use, two have proved more effective.

Once a month, my chiropractor gives me intra-oral neuromuscular massage therapy. Yep, he pops on some gloves and massages the jaw joint from inside the mouth. It’s awkward and painful, but releases built-up tension and pain in the joint. I also wear an occlusal guard that stops me grinding my teeth at night. It addresses multiple problems – skeletal misalignment, compression, poor jaw development, malocclusion and sleep problems.

Some TMJD patients require a 24-hour orthotic, which maintains the jaw in a muscle-comfortable position while improving posture and preventing the jaw from falling back and compromising the airways.

Jessica Strauss’s story

Jessica, of Colorado Springs in the  USA has worn a splint 24/7 for seven years. At times her jaw pain and migraines are so bad she can’t take her kids to school. events or go to family gatherings. I suffer from really bad brain fog and sometimes I end up saying things completely out of my normal personality… I was even put on an improvement plan at work for something I said during a flare up.”

The financial burden has taken a toll on her and her family. She has spent $23,000 this year to repair and replace broken teeth – and her insurance doesn’t recognise or cover TMJD. “I feel guilty for all the money I have spent on my jaw that could have been used on my family… My marriage is struggling,” she told Hatch.

Alternative treatments

Dr Cole believes a multidisciplinary approach to TMJD is the most effective treatment. “Allied professionals like dentists, chiropractors, physiotherapists, osteopaths, masseurs, myofunctional therapists, acupuncturists and other professionals with a special interest in TMJD can [all] help accelerate the treatment outcomes.”

Illustration for Jess Staveley's story of temporomandibular joint disorder. National Pain Week. 24 july 2017.

She stresses the need to find and treat root causes, not simply address pain. “I do not believe in drugs to mask the condition,” she told Hatch. “Pain is nature’s way of telling you that something is wrong.”

Many American TMJD patients recommend medicinal marijuana as a source of pain relief, but Dr Cole disagrees: “Marijuana will never cure TMJD. [That] should be reserved for conditions with no cure.”

Meanwhile, the desperation felt by sufferers is providing entrepreneurial opportunities for some dentists and other medical professionals.

Queensland soft-tissue therapist Paul Davies created Goltech® Therapy, which promises to correct myofascial dysfunction by restoring elasticity to the muscles. But Mr Davies was reluctant to tell Hatch about his “revolutionary” approach. “The treatment for TMJD is simple – but I’ve spent years developing it, and I want to reap the reward of that by people coming to see me – not seeing [another professional] who has devoted no time at all to developing that technique I have discovered.”

Dr Clayton Chan, founder of Occlusion Connections in Las Vegas, invited me to visit Nevada for treatment. I was shocked – travel overseas for an expensive treatment? According to Dr Chan, most of his patients come from interstate or overseas, as he is an authority on occlusion and treating TMJD.

Chronic pain support

Clearly, diagnosis is just the beginning. Chronic illness is more than just constant pain – it’s an endless cycle of anxiety, disappointment, tears, and nausea-inducing medication.

It’s overwhelming disappointment when a treatment doesn’t work. It’s having to take time off work or study to rest. It’s dealing with disapproving relatives, co-workers, and friends who think you’re just lazy. It’s feeling guilty. It’s dealing with disapproving doctors who think you’re just angling for prescriptions. It’s dozen of tests, thousands of dollars wasted, and a life of anger and exhaustion.

In some cases, as with Kathy Simpson’s TMJD, it is totally debilitating.

“Each person is an individual with their own symptoms and impacts,” Dr Cole told Hatch. “For some the pain is constant, for others it waxes and wanes. Many sufferers [lead] miserable lives. Relationships suffer. Personalities change. Suicidal ideation is not uncommon.”

Online communities like Facebook’s TMJD forum became a great source of support and advice for me; a Facebook community of more than 10,000 fellow sufferers around the world taught me that I was not alone. Many struggle to find professionals who understand their condition and can help manage it.

“I’ve been to so many doctors just to be told that they can’t help me,” Kathy Simpson told Hatch. “I’ve learnt more about this condition in the past two months from online communities than I have from actual medical professionals… That’s the worst thing in this day and age – there is so little help and information available.”

Lynn Nerdahl-Kuchara’s story

Lynn, of Milwaukee, Wisconsin, is 55 and has had TMJD since 1987. Eventually her temporomandibular joints were completely worn down, her bite completely misaligned, and her lower jaw had started to wear away her skull. The only course remaining was joint replacement surgery – considered a last resort for TMJD pain. It took eight years of pain and US red tape for her to qualify for and have custom-made joints fitted. It was extremely painful, she told Hatch, but it helped.

“I am very fortunate that I now have a 34mm jaw opening, which means I can eat more than just a liquid diet.” Despite that success she still needs pain medication daily.

Dr Cole has found that TMJD affects more women than men. Many other chronic illnesses including functional somatic syndromes like fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome also see larger numbers of female sufferers.

But clearly, thousands of men also have the problem. Dr Chan of Occlusion Connections told Hatch: “TMJD is not just a women’s problem; it is a problem to any human being who has joint derangement problems, masticatory dysfunctions and/or pains.”

So is there hope?

Living with invisible illness and chronic pain is tough. Most TMJD sufferers I spoke to have felt alone, depressed and misunderstood.

Fortunately, the more we speak about chronic illnesses the more awareness we create, and with awareness come dedicated medical professionals who seek treatment options for patients. Many medical professionals attend continuing education classes and conferences in the hope of finding better solutions for their patients.

And there’s relief for patients who encounter migraines as a symptom. The Migraine World Summit, held online in April this year, brought together dozens of international doctors and specialists to discuss treatments, research and the challenges of living with migraines.

Sydney migraine sufferer and co-organiser of the event Carl Cincinnato told The Sydney Morning Herald “There are new treatments coming; there’s lots of research under way.” – Jessica Staveley

Graphics by Jessica Staveley. Main illustration: detail from The Scream by Edvard Munch (1910 version).

About Jessica Staveley 22 Articles
20-year-old journalism student interested in film, women's rights, animals, politics, and music.