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?
Excellent post as always Caz. Thank you for all the time and energy you commit to your informative posts. There is so much about fibro/fatigue that people find difficult to understand and once you look well, you can’t be sick…is the biggest hurdle for many people to jump!
So true, the invisibility aspect can definitely a challenge to navigate, especially when faced with ignorance or lack of understanding. Thank you for such a wonderful comment, Marie ♥ x
It’s really disturbing that people will so readily jump to the conclusion that someone’s pain is “all in their head.”
It’s an easy cop-out, and it’s something we would like to think has been left back in history when women were classed as ‘hysterical’ rather than considering they had a real physical condition. Sadly it seems to linger on even now. x
Sorry to hear about anyone who suffers from a debilitating illness or condition – and the least we can do is to show support and not suspicion!
Agreed, John! Thanks for commenting – I hope the week is treating you well so far ????
This is a great post Caz it really explains everything to non sufferers ❤️
I’m glad it helps shed a little light on the conditions. Thanks, Elaine! Take good care of yourself lovely xx
Great post for anyone who doesn’t understand Fibro xx
I’m glad you liked it, thank you ???? xx
Caz, this is one great article. I didn’t know if any such thing existed.
Aw that’s very kind of you – if my blog can raise just a teeny tiny bit of awareness and understanding then I’m happy. Thank you for the comment ???? x
I’m aware of a dancing friend with fibromyalgia; she ‘pushes on’ as she says. I know there are times when she suffers more than moderately. On those days the pain can be seen on her face. However, her mental position is something to admire; as I do. She rarely, if ever, complains. She knows, with me she doesn’t have to. A gentle touch and a sweet lingering smile is enough to let her know I care.
That’s really all anybody wants. To know they are not alone; that someone understands and is willing to show it.
A great post, Caz. I care!
I’m glad she’s got you as a friend, Carolyn. Just a little compassion and attempts to understand (nobody has to try to ‘get it’ when it’s something you have to experience to fully appreciate it) can make the world of difference. It sounds like your friend is a tough cookie & I’m glad the condition isn’t knocking her spirit ♥ xx
It makes me sad how people judge….
Me too. For some people, a little more awareness could go a long way, but others are likely just judgemental full stop.x
Never disappoint! I needed this little article. My brother accused me of being too cynical recently… being too hopeless. And he did make me think. I’m tired. I’ve fought this disease for 21 years. I’ve tried every therapy program ever presented to me. If someone with a prescription told me to eat monkeys, I’d ask how many. So much to debunk. So many more options to try. Did I mention I’m tired? ????????
I’ve only dealt with fibro for a quarter of the time you have (nearly 13 years with bowel issues) and I’ve lost track of the times when I’ve felt fed up with it all and just so, so tired. I’m sorry you’re on the down slope with it at the moment; I really hope you get a little of the fight back soon but don’t rush it. It’s not ‘wrong’ to feel like this and it’s not a ‘bad’ thing to feel the way you do. It’s hardly bloody surprising! You’re a kick ass warrior, Kimmy dear. Never forget that, even during the times when you don’t feel like it. ♥ xx
Fibromyalgia myths. I hate that this is even a thing. Thank you, as always, for advocating for invisible illnesses. My fibromyalgia is not happy with me today. ????
I wouldn’t wish it on anyone, and I’m sorry you’ve been having such a rough time with it. Thank you for the comment – Please do take extra good care of yourself & stay safe lovely ❣ xx
Another outstanding post Caz! Raising awareness means improving our chances of someone eventually finding a cure, and in the meantime, improving treatments to help us live more comfortably. You do such a wonderful job advocating for fibromyalgia and chronic illness in general. Thank you for everything you do. Sharing this!
Finding a cure, can you imagine that? Wow, how great would that be! You’re right, in the mean time we have to focus on management and trying to change the social consciousness around the condition. And THANK YOU for your wonderful support and comments, and for everything you do to support others on your own blog, Terri. You’re a superstar and I’m very glad to have ‘met’ you in the blogging world ???? xx
What a great post. Thank you for taking the time to educate!
I’m glad you liked it – thank you, Laura! xx
A very informative post and good to know about it .
I’m glad you found it informative, Nisha. Thank you for reading ???? xx
Eye-opening post. I have heard of Fibromyalgia and even know of people who were diagnosed with it, but I don’t have any close friends or family with the condition. Thank you for clarifying what it is, although obviously i am very sorry you suffer from this painful and debilitating condition yourself. Take care – Nick x
Before I was diagnosed, I didn’t know anyone with it. I think without needing to know about something like this, such as with close friends or family being diagnosed, or randomly coming across news articles or blog posts, then most won’t really know all that much. Just a little more awareness could go a really long way. Thanks for the comment, Nick! I hope you’re taking good care & getting on okay during lockdown x
Great post. I’ve lost track the amount of times I’ve been told it’s all in your head, or felt let down by medical professionals. I was diagnosed almost 8 years ago, symptoms for 11 and it’s amazing to see in that time how much fibromyalgia is spoken about now. Sadly there are still some people and doctors who are sceptical about it all.
Ugh, I’m sorry you’ve had all of that to contend with, Nicola. It’s an easy cop out to put physical problems down to mental health issues and infuriating. It’s definitely good that fibromyalgia is being talked about more and hopefully that’ll also mean there’ll be increasing steps in research and treatments and support. Thank you for the comment lovely. Just started following you on Twitter & Insta too, I’m very glad to have found your blog! x
UGH. The fact that it isn’t the same day to day must make it so hard to manage. You mentioned a myriad of things that could possibly help AND that even those are trial and error, must be so difficult with it changing all the time. It is good that more things are being discovered about it. Thank you for sharing.
You’re right. It’s difficult needing to have to be flexible and go with the flow, while at the same time finding routine can be beneficial mentally and physically for management. Thanks for the comment, Terre! I hope the week’s going well for you so far xx
Thank you for this post. So many are quick to judge when they should be supportive instead. I’m glad your articles are here, and so informative, too, Caz. xo
It’s easier to rush to judgement, and it’s a shame because it can have quite significant consequences. Thank you for the lovely comment, Kymber, it’s much appreciated! I hope you’re doing as well as possible… stay safe ♥ xx
I’m glad you thought so. Thanks, Luisa! x
Fibro is awful. My chronic pain journey started in earnest when I was 19 (although there were signals even before then now that I look back), so I know it isn’t just a middle age or old person’s problem!
I’m so sorry you’ve had to contend with chronic pain in your life for so long. The notion of such conditions affecting only those in certain age groups only fuels the ignorance and stigma, doesn’t it? Thank you for sharing this, Maranda.xx
About 20-25 years ago, I was friendly with a support rep who had fibromyalgia, and she told me stories about the misdiagnosis, people not believing it was really a thing, etc. It doesn’t sound like things have changed much since then. I wish I could say I was surprised.
That’s awful, isn’t it? I’d like to think there would be some differences, at least with it being more known about. I don’t think I’d heard of Fibromyalgia until my 20s, so I think more of the newer generations will know about it, hopefully, but we need there to be more knowledge of it, not misunderstandings and stigma. That poor support rep, going through so many years of this sort of thing in society and within the medical profession, too. You’re right though, it’s sadly not all that surprising. x
Isn’t it amazing how diseases that disproportionately affect women are so often dismissed as “all in your head?” Migraines used to be considered a disease of highly strung women, now that they have drugs to sell us for it, it’s suddenly legitimate. It sucks having fibro, especially if you were apparently signed up for most of its comorbid conditions.
Absolutely! There’s historically a gender imbalance with medical issues, and within the medical profession, and sadly it’s still so pervasive. Mental health does interact with physical health of course, but to fob off physical issues on the basis of saying it’s imagined or ‘just stress’ and so on is incredibly insulting, and it’s also very dangerous. And yep, with fibro many will have many symptoms and likely other conditions to contend with, too, increasing the sort of stigma you end up facing with so many hurdles and medical appointments and professionals to deal with. Thanks for sharing your thoughts.xx
Thanks for explaining these myths Caz. I know quite a few people who have fibromyalgia and I can imagine it being very frustrating that these myths are the general views about this chronic illness. National Fibromyalgia Awareness Day is definitely needed to keep spreading the truth and facts that people need to understand xx
Totally agree, days like this can actually make a difference because they get the conversation flowing, experiences being shared, and it helps both those with and without the condition. Thanks for the comment, Alice! xx
AMAZING post, Caz! ???? The whole article is a brilliant read, but I think my favorite line has to be this one: “Fibromyalgia may be invisible, but you are not.” — What a beautiful statement that holds absolute truth. Far too often, people feel invisible because they deal with a condition easily misunderstood. We need awareness on all fronts for all people. No one should feel alone in their suffering.
I’m grateful you tackled the ‘umbrella diagnosis’ notion. You’ve captured it in a way only you could. It’s true, so many people believe that it’s simply not a real diagnosis at all. In some cases, I believe that it isn’t — rather a result of a clueless healthcare professional who ‘needs’ an answer. In such cases, that’s not the patient’s fault!
It does my heart good to know that you are here with us, sharing your compassion and knowledge on all things health. Thanks for being you! (P.S. I am unbelievably behind. Trying not to stress myself out as I catch up. Nevertheless, please forgive my lack of reading, commenting and sharing in the month of May. I haven’t forgotten you!) ♥ My prayers and thoughts are with you; how are you my friend?
Aww I’m so glad you liked the post! It’s hard to put some of these thoughts and considerations into writing at times, trying to get across how something ‘feels’ and what it’s like when people may not have anything as a point of reference. “Awareness on all fronts for all people” – Absolutely, totally agree and that’s a good way to put it.
Please, please do as I say and not as I do here – Don’t push yourself trying to catch up and don’t stress it. Honestly not worth it. And never feel you have to read or comment on my posts (though I LOVE your comments and appreciate each and every one of them), it’s overwhelming enough to keep up with the day to day let alone try to catch up with the blogging world sometimes. I’m also unbelievably and now laughably behind and I know how much it gets to me, so I really hope you can ease off a little and not let it bug you too much. Take care of YOU. How’ve you been doing with the current situation, are you hanging in there okay? Sending lots of love, take extra good care of yourself, Holly ♥ xxxx
Good post. I was diagnosed quite a few years ago and still there are those that don’t believe the toll it takes. Good post
I’m glad you like the post but I’m sorry you can relate. You’re right, there are still many that are sceptical of the condition and the toll it takes on us mentally and physically, the dent it can make on our lives, is huge and under-appreciated. Thank you for commenting – please know you’re not alone in how you’re feeling.xx
” ‘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 was the way my doctor diagnosed me more than 10 years ago. He basically said he couldn’t find anything physically wrong with me, but he believed me when I said I hurt all the time and my skin was more sensitive to touch and sunlight. He told me Fibromyalgia is a medical term for “I don’t know.” I have since changed doctors and my new doctor asked me if I had ever been tested for an auto immune disorder to which I said no. My symptoms are almost identical to MS, but after all of the testing (MRI, CT scans, neurological testing, blood work, and psychological testing) he said the only thing it could be is Fibromyalgia. He’s one of those doctors that didn’t believe it’s a real condition, but when I sat in his office crying because I was so tired of being in pain, he changed his tune. I don’t like narcotics so I’ve been taking OTC pain killers. I take hour long epsom salt baths. I do some yoga stretches to release tension in my muscles. I use heating pads and massage therapy. And sometimes, all I can do is just go back to bed.
I’m sorry you’ve been through the challenges with diagnosis & with managing a condition like this for so long. I’m glad your initial doc all those years ago believed you, even though he couldn’t find a functional reason behind your symptoms, and also that the next doc changed his tune when seeing how much you were struggling. That’s the problem with something that can’t be ‘seen’, it doesn’t come up on a scan or a blood test. It sounds like you’re doing what you can to make the days more bearable, like stretches, heat pads, epsom baths, etc. The little things add up just to take the edge off when it comes to chronic pain. Thank you for sharing some of your experience. Sending gentle hugs ???? xx
Too many Doctors miss what is staring them in the face because of their predjuices mostly against woman. I believe a man would be taken seriously with the same symptoms.
That does sadly seem to be the case all too often, doesn’t it? I read an article the other day about research finding when men and women go to the emergency department with chest pains, the majority of men were treated as though it were a heart attack and given proper care. The majority of women were told it was nothing serious or just stress and sent away. Shocking.