May 12th 2020 is National Fibromyalgia Awareness Day, a day to raise awareness and to celebrate how far we’ve come in the fight for recognising this condition. What’s also noteworthy is that this is also the day to celebrate the 200th anniversary of Florence Nightingale’s birth, an incredible woman who is considered to be the founder of modern nursing (you can read more about her on the History website).
It’s not known just how many people are diagnosed with fibromyalgia, let alone how many have been misdiagnosed. Some figures suggest it predominantly affects 7 times as many women as it does men, and that around 1 in 20 people live with fibromyalgia to some degree. Butterflies, ribbons and the colour purple are often used for fibromyalgia awareness.
Here are 7 commonly held myths and misconceptions about fibromyalgia discussed & debunked.
1. It’s A Psychological Problem
Fibromyalgia is a real condition affecting the physical body; it’s not “all in your head”. The notion that fibromyalgia is a psychological problem and not a ‘real’ physical condition is sadly still too common and can be incredibly insulting. While the cause is not truly known, some can pinpoint when it began or what they think may have triggered it.
There will be instances where the mental and physical correlate, where the mind-body connection is a two-way street. Some believe mental disorders may be precursors for fibromyalgia in some cases or that mental illness may make a person more exposed to developing such a condition. However, most people with fibromyalgia are experiencing physical illness with biological abnormalities, which may then affect mental health as a result of the impact to their physical health, work, relationships, lifestyle and so on.
Fibromyalgia is a real physical condition, not an imagined one, with real physical consequences. It has been considered for centuries but was first classed as a mental disorder, before becoming viewed as a rheumatic disorder by the early 1800s.
It was given the name ‘fibromyalgia’ in 1976, derived from the Latin “fibro” (relating to fibrosis tissue) and the Greek “myo” (for muscle) with “algia” (pain). By 1990, diagnostic guidelines were implemented by the American College of Rheumatology and the first prescribed medication was made available by 2007.
More recently, research is increasingly revealing physical markers of fibromyalgia, such as increased blood flow among certain regions of the brain, low levels of the hormone somatomedin C, low levels of the muscle-cell chemicals adenosine and phosphocreatine, high levels of the neurotransmitter ‘substance P’, and dysregulated blood blood cytokine and chemokine patterns.
2. It’s An Umbrella Term
Yes and no. Referred to as both a ‘wastebasket disease’ and ‘umbrella term’, fibromyalgia is often seen as a catch-all for symptoms that don’t fit other conditions and can’t be easily explained. Seeing fibromyalgia as a trashcan diagnosis links with the assumption its not a real condition in and of itself.
Fibromyalgia does encompass a myriad of symptoms, though many people also have additional diagnoses to account for other problems they’re experiencing. I don’t experience fibromyalgia in a vacuum; I also have chronic migraines, specific pain following surgical nerve damage, a stoma, osteopenia, connective tissue disease, bronchiectasis, and so on.
I was diagnosed with fibromyalgia in more recent years, along with chronic fatigue, following the decline of my health since my first surgery. Because fibromyalgia can’t be objectively tested and measured, it’s a challenging diagnosis to reach and it’s made harder still when healthcare professionals are either sceptical, unsupportive or totally disbelieving of either fibromyalgia itself or the symptoms you’re presenting them with.
Although it can involve various symptoms and can be experienced differently by each person, fibromyalgia is a distinct condition. It may overlap with other illnesses but classic symptoms are still typically prevalent.
3. It’s Not A Real Condition
What makes a disease, disorder or illness real? The terms used for any condition have been coined by someone for the first time and added to medical manuals to account for certain diagnostic markers or symptoms. What makes that condition real? The lack of a specific test to definitively conclude the presence of fibromyalgia does not make it any less real than the many conditions that likewise lack a particular test for diagnosis.
Diagnosis of fibromyalgia is challenging and often involves a process of elimination. Nonetheless, there are specific diagnostic criteria to be used in a diagnosis of fibromyalgia.
Fibromyalgia is also an invisible illness. Just because someone may look ‘fine’ does not mean that they are. In addition, many with fibromyalgia and chronic pain become skilled at downplaying just how poorly they’re feeling and how bad their pain and other symptoms really are.
Just because a condition cannot be seen from simply looking at a person does not mean the illness does not exist.
4. It’s ‘Just Widespread Pain’
Widespread pain is a common factor among those with fibromyalgia, though there are also particular points in the body more sensitive to pain (‘tender points’) that many experience and are often used in the diagnosis of the condition. Pain types also vary, from stabbing and burning, to aching and throbbing. There are also numerous other symptoms commonly found with fibromyalgia, from digestive troubles and fatigue, to stiffness and cognitive problems (sometimes referred to as ‘fibro fog’).
Symptoms not only vary between people, they can vary for the same person, minute to minute, day to day. It’s unpredictable and no two days are ever quite the same. There can be ‘flares’, where symptoms are considerably more severe compared to that person’s usual baseline; such flares can be unbearably exhausting and painful. The symptoms of fibromyalgia can’t simply be pushed through nor is it a case of mind over matter.
5. It’s A Middle Aged Woman’s Illness
Although more women than men are diagnosed with fibromyalgia, the condition can affect men, women and children. The condition doesn’t discriminate by age, race or gender.
6. Fibromyalgia Diagnosis Is The End Of The Road
Many find it hard to accept a fibromyalgia diagnosis, not just because of the condition itself but because of what it means. It can feel like the healthcare professionals are saying ‘there’s clearly something wrong with you but we have no idea what it is… there’s nothing more we can do for you’. This ties into the point of the trashcan / umbrella diagnosis.
Lack of information and fibromyalgia-specific support at the time of diagnosis can leave many feeling like the diagnosis is the end of the road, but that doesn’t have to be the case. I was personally told by the rheumatologist not to go online because I’d ‘fall down the rabbit hole’. I imagine she wanted me to go home, give up and stop bothering her.
Acceptance, often a difficult and ongoing work-in-progress for many, can be done in conjunction with keeping open mind, still being open to new developments, diagnoses and tests and treatments while working to manage fibromyalgia in day to day life.
While there’s no cure, a multi-disciplinary approach can help to some degree. The likes of pacing, pain self-management therapy, massage, acupuncture, gentle exercise, gadgets, self-help books, medication, supplements and so on will work differently for everyone; both the experience of fibromyalgia and its management will be different for each person. It’s often a case of trial and error for each individual to develop a routine and to find the tools that work more effectively for them.
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Fibromyalgia may be invisible, but you are not. Make your voice heard and be part of the change. Whether you have fibromyalgia or not, we can all play a part in being open and mindful.
20 years ago, much of the public wouldn’t have been aware of fibromyalgia. Even in the last few years there have been increasing steps towards greater understanding, helped in part by media, bloggers, celebrities and charity awareness initiatives.
While there’s still a long way to go in improving diagnosis, treatment and support, along with increasing awareness and reducing both scepticism and judgement, it’s important to take a breather and see just how far society and the medical world have come.
Further Information & Support
I had to be selective in what I included here – Is there anything you would add? Or is there anything you’d like to know about fibromyalgia?