Fibromyalgia is a disorder that is characterised by widespread pain and fatigue, among many other symptoms. It was formally recognised in its own right in the mid 1980’s but has gone undiagnosed or by other names for many years previously. It affects between 2% and 4% of the general population, as stated in this study.
Unfortunately, fibromyalgia carries a lot of stigma with it, even within the medical community. Due to the fact that not a lot is known about the cause or exactly how the disorder works, it’s often thought to not ‘be real’, or to be a disorder that is given to pain patients when a doctor can’t figure out what is causing their symptoms. This stigma is entirely incorrect and undeserved; Fibromyalgia is a very real disorder. It has its own set of symptoms and is a valid diagnosis in its own right.
Stigma around fibromyalgia is prevalent
This stigma can lead to fibromyalgia being undiagnosed; it can mean that some medical professionals who do not feel that this diagnosis is ‘real’, may invalidate a patient’s experience and may not give them the treatment that they need and more importantly, deserve. Stigma is so prevalent in fact, that there are documents issued by fibromyalgia charities to provide guidance as to how to approach doctors and what steps you can take if a medical professional doesn’t acknowledge fibromyalgia as ‘real’, such as this one.
It may also mean that physicians are more reluctant to give this diagnosis as a result of the stigma they know a patient will face. This study is one of many discussing this stigma, and states that
FM patients and their interactions with the medical system are filled with a sense of delegitimization, betrayal and anger
Stigma of this magnitude can discourage pain patients from seeking help, whether diagnosed or undiagnosed, because they aren’t sure of the reaction they will get not only from society, but from the medical professionals they go to for help.
What is fibromyalgia?
First, let’s talk about what fibromyalgia is: it’s a chronic condition, meaning that it persists for a long time, and there’s currently no cure. While the main symptoms are pain and fatigue, there are a wide range of other symptoms. Symptoms and how they are experienced can vary greatly from person to person. Symptoms can also vary depending on the weather, time of year, how active you are and how much stress is in your life.
This varying of symptoms is something that causes scepticism. When presenting a whole range of symptoms that don’t seem to tie together and that vary from day to day to a doctor, it can cause confusion and disbelief. However, if you think about it, we are all individual, and most, if not all, medical conditions are experienced to differing degrees and in different ways by each person, while sharing similar core symptoms.
Even the common cold can be different from person to person. While some people may experience cold symptoms in a more severe way and need to stay home from work, to stay in bed and rest, others may find their symptoms more mild and be able to get on with their day to day life; the same person may experience a cold differently each time they contract one. This doesn’t make their symptoms false or any less valid. Fibromyalgia is no less valid because the symptoms vary.
What are the symptoms of fibromyalgia?
Fibromyalgia patients deal with a lot, so let’s get an idea of what we go through and how real these symptoms are:
- Widespread pain
The main symptom of fibromyalgia is widespread pain, meaning in many areas of the body. Depending on the person, some areas may be more painful than others, and this can vary from day to day. The severity of pain can vary: some days patients may be pain free or have very low pain levels and be able to function without issue, while on other days pain levels may be extremely high and functioning can feel impossible. The pain can also vary in how it feels: pain may be experienced as a dull ache or something more prominent such as a stabbing pain, a burning feeling or a muscle cramp.
Hyperalgesia means that we become more sensitive to pain. Things that may normally only cause a brief pain, can feel like a major injury and be experienced in a more severe way by fibromyalgia patients. For example, as a fibromyalgia patient sometimes when I stub my toe or bump into something, it can feel as though I have broken my toe; I can be in real agony from something that should be fairly insignificant
Neurochemical imbalances in the central nervous system are associated with central amplification of pain perception
[See related post: central sensitization].
Allodynia means that something that should not be at all painful can be felt as pain. Often this can be things like someone touching you, clothes scratching against your skin, water from the shower hitting your shoulders and so much more. For me, one that I regularly experience is when I have an itch and scratch it, I can be in severe pain that makes me cry out, as though my skin has been broken.
- IBS (Irritable Bowel Syndrome)
IBS is a struggle in and of itself, and often comes with fibromyalgia. IBS is a problem with the digestive system, often causing stomach cramps, diarrhoea or constipation, bloating and gas. It’s unpleasant and difficult to live with. It can come and go, or be more constant, just as the other symptoms we have mentioned.
The headaches that come with fibromyalgia can be constant, sometimes a dull ache or something more severe such as migraines. Headaches tend to be more common as a symptom if you experience a lot of your pain in your shoulders and neck.
- Non-restorative sleep
Often the pain and other symptoms that come with fibromyalgia can make it very hard to sleep for obvious reasons. We experience what we like to call ‘painsomnia’: our pain making it impossible to get comfortable and drift off to sleep. Even when sleep is managed, it tends to be non-restorative, meaning that we are not waking up feeling refreshed and having regained our energy, but instead feel just as tired as we did when we first went to bed. In my experience, even if I sleep for nine or ten hours, I often wake up feeling very little, if any, benefit from the sleep I have had.
The aforementioned problems with sleep only fuel and add to the fatigue that already comes with fibromyalgia. Fatigue is one of the most debilitating symptoms for a lot of people, myself included; it’s not just feeling tired but a complete exhaustion that overtakes everything, making it hard to think, to function, sometimes to even get out of bed. It can also come with flu like symptoms, including feeling drained, chilled, and having a sore throat, among more obvious flu like symptoms.
- ‘Fibro fog’
Commonly known as fibro fog, fibromyalgia comes with cognitive problems; this can feel literally like thinking through a fog, making it hard to understand what’s going on around you, to process new information and to think clearly. It can result in confusion, slower speech and problems in concentration. For some people this is a more constant symptom while for others it comes and goes. I’m lucky that my ‘fibro fog’ only comes when I am very tired or am at the end of a very busy day.
- Muscle stiffness
Muscle stiffness can affect any part of your body, making it feel that your muscles are very tight and often causing them to cramp or spasm.
- Temperature regulation problems
Fibromyalgia patients often cannot regulate their own body temperature, meaning that we can either feel way too hot or extremely cold which can be frustrating and hard to live with. It can also be hard to tell when we should be dressing warmly because we may feel very hot even in cold weather; for example, when I am out hiking even during winter, I often feel absolutely boiling, yet it’s snowing or raining with low temperatures.
Feeling dizzy, lightheaded and often being quite clumsy is a symptom that can sound a bit light-hearted but is actually very distressing and can make it harder to function.
Paraesthesia is more commonly known as pins and needles. Living with fibromyalgia it’s common to experience a prickling tingling sensation on the skin; to feel a burning sensation at times; to feel as though something is crawling on your skin or even to experience numbness in certain parts of your body. For me numbness is usually my lower legs and feet making it difficult to walk, while the other sensations can be anywhere on my body.
- Restless leg syndrome
That overwhelming feeling that you need to move your legs, not being able to keep them still, is often a symptom of fibromyalgia. Interestingly, I also experience this in my arms and shoulders, particularly when trying to sleep.
- Sensitivity to sound, light and changes in the patient’s environment
Fibromyalgia can make you highly sensitive to loud sounds, bright lights, smoke or certain smells, among all sorts of other things. It can feel like a sensory overload which can be distressing and disorientating.
- Painful menstrual cycle
Fibromyalgia can contribute to making periods more painful, causing people to experience more cramping and discomfort during their cycle.
- Mental health problems
As a result of all these symptoms, it’s highly common to experience depression and anxiety, which become symptoms in themselves. Being in pain and going through these symptoms as part of your daily life can quickly take a toll on your mental health.
An unknown cause fuels the controversy
One of the main roots of the controversy around fibromyalgia, is that the exact cause of the disorder is not known. The unknown often makes people uncomfortable. The thought that the exact science behind an illness is not present, can make people feel that fibromyalgia is invalid. Plenty of research is being done into fibromyalgia to better understand the science behind the disorder and hopefully to develop better treatments.
Many illnesses and disorders are still being researched, a majority in fact, and just because we do not have all the answers, does not lessen someone’s experiences and does not mean that the answers we do have are any less valid. This study states outright that fibromyalgia is real, emphasising that “fibromyalgia has an entry in the 10th edition of The International Classification of Diseases” and that “ICD-10 is almost literally a gold standard”.
So, let’s look at the information we do have about what causes fibromyalgia. It’s thought by scientists that several factors are involved, the first of which is a problem with how patients with fibromyalgia process pain signals. It’s understood that our central nervous system is not processing pain signals around our body in the way that it should be, therefore causing our body to experience pain in a different way. The theory is that this problem in pain processing comes from changes in the chemicals in our central nervous system, resulting in them giving out the wrong instructions.
Essentially the signals that are sending out pain signals are too high, and the signals that are supposed to limit pain are functioning on too low of a level. This study explains that, “ascending and descending pain pathways operate abnormally” and that “levels of several neurotransmitters that facilitate pain transmission are elevated in the cerebrospinal fluid and brain, and levels of several neurotransmitters known to inhibit pain transmission are decreased”.
Research has also found that levels of hormones such as dopamine, serotonin and noradrenaline within patients with fibromyalgia are particularly low. These hormones help to control mood, help you to focus, help you to act in appropriate ways to situations, control appetite, control how your body moves among so many other vital processes. Levels of cortisol are often found to be too high or too low, or are processed differently; cortisol controls so many things including blood pressure, inflammation in the body, metabolism, and more, even down to how your brain forms memories.
Genetics are thought to play a part in making someone more predisposed to fibromyalgia, but it seems that a stressful event either physically or psychologically is often the trigger for fibromyalgia symptoms to start. The fact that stress can trigger fibromyalgia to begin is a big contributor to people’s scepticism that fibromyalgia is ‘all in the head’, when in fact we know that all pain comes from our brain and the way our bodies process pain signals. In fact this study states that “most highly prevalent chronic pain conditions (fibromyalgia, headache, irritable bowel, interstitial cystitis, TMJ disorder, etc …) are now thought to be much more so originating from the brain than from peripheral tissues.”
Does no definitive test mean no disorder?
The diagnostic process of fibromyalgia is also something that causes doubt, because there is no definitive test for fibromyalgia; instead the diagnosis is a process of elimination. This can make people uncomfortable with the idea that eliminating other illnesses first, leaves fibromyalgia in last place, a diagnosis given because that is the only explanation left.
The criteria for diagnosis of fibromyalgia involves pain that has been ongoing for three months or more; severe pain in over three areas of your body, typically six to seven areas or more; and finally, that all other conditions have been ruled out. While having no test to be able to test for fibromyalgia can be worrisome, it doesn’t make it less valid. Until more is understood about the science behind the disorder, elimination of other possibilities is the most practical way to give the diagnosis.
The process of elimination in regard to figuring out a patient’s diagnosis has been used for many years; it’s an accepted and understood concept in the medical community during the diagnostic process, and so shouldn’t be used to perpetuate the myth that fibromyalgia isn’t ‘real’.
This book on the diagnostic process of physical illnesses states that “Absolute certainty in diagnosis is unattainable, no matter how much information we gather” and more importantly that, “Our task is not to attain certainty, but rather to reduce the level of diagnostic uncertainty enough to make optimal therapeutic decisions”
In many situations you will hear medical professionals ‘ruling out’ a certain cause, so that they can hone in on what really is causing the medical issue in a patient. This is just as valid in fibromyalgia as it is in any other illness.
Throughout the years there have been plenty of instances of illnesses and disorders that scientists were not aware of and did not understand; as technology processed and more research was done, these medical issues now have names, an understood cause and treatment. Still in the present there are many medical matters that scientists are working on and struggle to understand. Fibromyalgia is no different: professionals not knowing everything about fibromyalgia, does not make it a ‘fake’ disorder.
How is fibromyalgia treated?
Given that fibromyalgia is a chronic illness, this means that it is ongoing and persistent, but that does not mean that symptoms can’t be treated. Typically painkillers may be offered but for the majority, these tend to be ineffective. Other medications that may be offered include antidepressants; not only do these help to treat the mental health issues that come with the disorder, but some research suggests that they can help to increase levels of neurotransmitters and in turn reduce some of the symptoms coming from the low levels of neurotransmitters thought to be present.
Muscle relaxants can be offered to some patients and sometimes medication to help patients sleep since trouble sleeping is a big aspect of living with the disorder. Anticonvulsants are sometimes prescribed which have some success in treating the pain; they are thought to calm overactive pain messages sent in the central nervous system, but there is still more research needed into exactly how this works and whether this treatment can be truly effective.
Aside from medication being offered, effective treatments of symptoms include Cognitive Behaviour Therapy (CBT) which can really help to get a handle on symptoms, to view your disorder in a more positive way and learn how to live a more functional life. Other relaxation and mindfulness techniques have also had some positive effects. Exercise, as strange as that may sound, can really help to increase fitness and reduce symptoms. I can understand how that can sound impossible to someone who is suffering with chronic pain, but gentle exercise can really help. In my case, walking and hiking have done wonders for my symptoms. I have also found that mindfulness techniques have improved my quality of life immensely.
For some medical professionals, a lot of the disbelief of this order can stem from the lack of clear cut treatment. Not knowing which treatments are going to work or how to help patients can understandably be confusing and frustrating for professionals whose lives revolve around science and definites. I fundamentally believe that the vast majority of medical professionals truly do want the best for their patients, but often a lack of education, awareness and a rise in stigma for chronic illnesses like fibromyalgia, can cloud their judgement.
What can be done about this stigma?
The more people who speak out and educate others on fibromyalgia, whether from a medical point of view or a personal standpoint, or even both, the more we can raise awareness. The more we raise our voices and speak our truth, the more we can educate people about the very real symptoms we are living with and hopefully help the conversation to become normalized and accepted. In turn we can improve the diagnostic and treatment process for the patients who will come after us.
The more medical professionals are educated and trained about chronic illness, the more they can understand what patients are going through on a human level and can see from the existing research, and the existing patients, that fibromyalgia is very real.
More research is being done into the causes of fibromyalgia and how to treat it all the time; as more people engage in this research, the more funding it gets and the more interest in the topic it raises, the more answers we will get.
There is so much hope for fibromyalgia patients: there are treatments that can help us to manage our conditions, to reduce our symptoms and to thrive. I have learnt techniques over the years that have helped me to live a happy and high-functioning life with fibromyalgia. I am now able to work full time doing work that I absolutely love, maintaining a high level of functioning and even being able to hike long distances with my dogs which I couldn’t have dreamt of when I first started my fibromyalgia journey. It takes determination and investing time and effort in your recovery journey, but you can do it. Don’t give up because hope is out there!
Thankfully, stigma is being broken down. It’s a slow process, but it is happening. I have to believe that one day patients will be able to go into any doctors office and explain their symptoms, being met with understanding, compassion and even if the problem is unknown, acceptance.
- Fibromyalgia Association UK, (2004), “What To Do If Your Medical Professional Refuses To Accept Fibromyalgia As A ‘REAL’ Illness.”
- Winfried Häuser, MD, Mary-Ann Fitzcharles, MD, (2018), “Facts And Myths Pertaining To Fibromyalgia.”
- The Journal of Rheumatology, Frederick Wolfe, (2009), “Fibromyalgia Wars”
- The Journal of Rheumatology, Yorman Shir, Mary-Ann Fitzcharles, (2009), “Should Rheumatologists Retain Ownership of Fibromyalgia?”
- National Academies of Sciences, Engineering, and Medicine. (2015). “Improving Diagnosis in Health Care.”