Last year, Niamh suddenly started getting sharp pains in her lower back and down her legs. Not long after, the pain expanded and moved down into both her knees.
“It felt like my legs were on fire,” she told me.
The pain was burning and sharp but also had a dull ache underneath it, as though her bonds were being squashed, were crumbling under a heavy, intense pressure. The pain worsened until Niamh struggled to walk normally. She started using a walking stick, sometimes crutches. But the pain kept getting worse.
This week, she was approved for her first wheelchair. She cried because she was relieved, but also because the news brought on intense feelings of loss and grief.
“I never thought I’d be in a wheelchair by age 28,” she said.
Seven months after the pain set it, Niamh got diagnosed with fibromyalgia – a scourge of a disease that affects women and those with reproductive organs all over the world and is woefully under-researched and under-treated. It does not have a cure.
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Have you ever heard of fibromyalgia? If not, you’re not alone. I hadn’t heard of it until recently, either. But I know scores of women who have it, and I might be on a path to receiving a diagnosis of it, myself.
Fibromyalgia is a condition that causes chronic pain all over the body. We don’t know what causes it, or how to treat it. We also don’t know exactly how many people have it, but doctors estimate that it’s around one in twenty.
The one thing we do know? That fibromyalgia affects seven times more women than men – which, to me at least, explains why it is chronically under-researched and misunderstood.
Fibromyalgia can cause pain anywhere, but a lot of women told me it often comes in the back, neck, legs and chest. It also causes intense fatigue and tiredness as well as lack of concentration or brain fog.
Fibromyalgia is sometimes classified as a type of arthritis. Arthritis Australia describes it as “name given to a group of symptoms marked by generalised pain and muscle stiffness.”
One woman I interviewed for this story, Jessica, said her fibromyalgia initially causes pain in her shoulder and back, and later affected her hips, thighs, the top of her arms and her neck. Her pain is now constant, and she also experiences intense fatigue and migraines.
Sufferers also report sleeping poorly and feeling pain throughout the body first thing in the morning or after resting.
Arthritis Australia also lists irritable bowel problems, such as diarrhoea and stomach pain, as symptoms that sometimes accompany fibromyalgia.
Doctors suspect the disease could be a disorder of the central nervous system that causes pain signals to misfire. According to this theory, chemical imbalances in the brain cause the body and the nervous system to become hyper-sensitive to pain.
Because we don’t know how fibromyalgia works, we also don’t know how to treat it. At the moment, doctors use antidepressants to dull patients’ pain responses as well other painkillers such as non-steroidal anti-inflammatory drugs.
Like so many other chronic pain conditions, these treatment options are just not good enough for too many sufferers.
Niamh says that none of the painkillers she has been prescribed have helped with her pain. She has been referred to a pain management clinic, but waiting times are long and so many fibromyalgia patients are languishing in queues for private pain specialists without relief.
Another byproduct of our poor understanding of fibromyalgia is that it is incredibly difficult to diagnose. Doctors have not yet found a pathology test, blood test or imaging test that can indicate that a patient has fibromyalgia. Doctors usually rely on examining symptoms to give a diagnosis, and sometimes rheumatologists – doctors who specialise in arthritis and other conditions involving the joints, muscles and bones – can assist with diagnosing the condition.
Jessica had pain for years before she received a fibromyalgia diagnosis. After her doctor finally diagnosed her recently, they referred her to a rheumatologist, but she is still waiting for her appointment.
“My diagnosis was so difficult to understand, because it is essentially a diagnosis of exclusion,” Niamh said. “The diagnosis doesn’t bring with it a better understanding of the disease, or how to manage the symptoms.”
So what is this mystery disease, and where does it come from?
There’s one theory as to the cause of fibromyalgia. Doctors believe it could be caused by a traumatic event. If a person experiences trauma, either physical or emotional, the body enters a state of fight, flight or freeze. In this state, the heart pumps blood to the largest muscles in the legs and arms, preparing us to run away.
In a recent study of 395 patients with fibromyalgia, 45.3% had PTSD and 66.5% developed fibromyalgia after the onset of PTSD.
The brain sends messages to many primary organs, including the stomach and gut, instructing them to freeze while the body deals with the crisis. The blood pressure and heart rate spike, the mouth dries up, the mind adopts a kind of tunnel vision.
If the body and mind do not properly process the traumatic event, sometimes the nervous system can become re-enter fight, flight or freeze during everyday life. This causes the nervous system to flare up and dysregulate, eventually causing pain signals to misfire and the body to break down under the pressure of the fight, flight, freeze state.
This constant re-triggering of a state of fight, flight of freeze is one of the key elements of post-traumatic stress disorder (PTSD).
Doctors now think that PTSD can contribute to fibromyalgia, observing that many sufferers develop the disease soon after a physically or emotional distressing event. That could shed light on why such a large proportion of sufferers are women.
The US Veteran’s Association estimates that half of all women experience trauma in their lifetimes. Women are also more likely to develop symptoms of post-traumatic stress disorder after a traumatic event than their male counterparts.
Women are, of course, many times more likely to be victims of sexual assault, domestic violence and childhood abuse, which are also some of the most likely incidents to cause PTSD symptoms.
Trauma responses can also be caused by invasive medical procedures and surgeries.
Niamh is one of the 10% of women who suffers from endometriosis –an inflammatory disease involving tissue from the uterus growing in other parts of the abdomen.
Endometriosis, like fibromyalgia, is under-researched and under-treated. At present, the only effective treatment for endometriosis is laparoscopic surgery to physically remove the damaged tissue from the body.
Niamh had surgery for her endometriosis last year, and complications left her in severe pain and distress for weeks and months afterwards.
Endometriosis suffers are twice as likely as any other person to develop fibromyalgia, so it’s possible that the trauma of endometriosis surgeries could contribute to fibromyalgia.
So, one disease that women suffer from, and that is too often ignored and dismissed – endometriosis – can be the cause of another chronic condition that too often affects women and is too often dismissed – fibromyalgia. Between them, the diseases are impacting the quality of life of countless women across Australia and the world. It’s a self-reinforcing loop of pain and confusion. Does that make you angry? It makes me angry.
It’s time to start taking women’s pain seriously, so we can resolve this spider’s web of debilitating disorders and give women the relief they need and deserve.
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