If you are like most Spoonies, your fibromyalgia diagnosis came after a litany of tests all came back normal. Blood work, imaging, nerve testing, and medication trials failed to identify the culprit and left your medical provider without proof, so fibro it is. The rollercoaster of emotions of getting your hopes up that each test will hold the answer, only to be told everything looks normal. You want to be glad it's not something degenerative, but loss of quality of life and pile of symptoms can be a significant detoriation from who you once were and what you could do. It is difficult to endure the lonely battle head held high with no visible proof to give to others to help them understand the excruciating pain and debilitating fatigue. Your resolve for resolution, hope, and faith in yourself can all slowly erode. Naturally, it leaves one asking,
Is it ALL in my HEAD? Am I making this up?
Before you start down the path of angst and self-degradation, let's see what the research says about those of us with fibromyalgia. Now it's important to note that these studies give us data that is still highly limited. Fibromyalgia was not even recognized as an illness by the World Health Organization until 1992.¹ That means in terms of research data, we know very little. However, in the past ten years, funding has significantly increased. What once was considered an illness of the mind is developing into a very complicated, system-wide disorder, creating an increase in disability. I will by no means cover the extent of research on fibromyalgia, and other implications have been found that are not included in this post. I hope this gives you enough information to feel better, but not so much that you stop learning independently. The research is constantly changing! Let's begin with the biological research data from the top down.
MRI tests have shown greater neuronal activation in the pain processing areas of the brain that are responsible for telling the body how to react.² These areas are primal, protective areas of the brain that react before we can think. This means that our brain amplifies pain signals in response to stimuli instinctively.
Adding to the fuel, when our brains are supposed to be in "rest mode," imaging shows increased activity in our insula, which is the area responsible for activating in response to a threat, usually pain.² It is vital for survival, warning us of danger to the body, but as any Spoonie will tell you, it wreaks havoc when there becomes a daily list of triggers. So, heightened pain processing and gearing up for war when we are sleeping equals a system primed for danger and ready to blast the horns at the first sign of it. As if that wasn't enough, those with fibro also have decreased connectivity in the areas of the brain responsible for signaling the body to stop the pain.² This means those horns keep blaring. So, to get to the point, no, it's not in your head, but part of the problem lies in your brain and its wiring and firing. For more on the pain-stress connection, check out this post.
But it doesn't stop there. Deep inside your brain is an area called the hypothalamus. Your hypothalamus is connected to your pituitary glands which are responsible for secreting hormones and maintaining your autonomic nervous system, which regulates involuntary processes including heart rate, blood pressure, respiration, digestion, and sexual arousal. In addition, it's responsible for keeping the body in a state of homeostasis or balance, allowing it to function correctly.
The pituitary glands send messages to your adrenal glands, two small triangle-shaped glands on top of your kidneys. These glands then secrete hormones that regulate your metabolism, immune system, blood pressure, response to stress, and other essential functions.
Now that you can picture the relationship, I'll explain why this mini-science lesson is important. Studies indicate that this system is dysfunctional, particularly in releasing cortisol and other stress hormones such as adrenaline.² Another difference has been noted in growth hormone release at night.² This could contribute to fatigue and an inability of the body to repair itself. This leads to a reduced ability to cope with daily demands and stressors. So as you can see, the main central communication pathways are altered. Those trends continue as we look at the peripheral system.
The peripheral nervous system is the nerves that relay information to the brain about the environment. There are three types of nerves, motor, sensory, and autonomic. Motor nerves go from brain to body and are responsible for moving your body for things like walking and talking. Sensory nerves go from brain to body and tell the brain about sensations from the skin and deep inside the body. They can be felt as tingling, numbness, pain, and extreme sensitivity to touch, motion, or stillness. Lastly, autonomic nerves control the automatic processes discussed earlier, like heart rate, blood pressure, digestion, sweating, and sexual function. This may explain why temperature regulation, anxiety, and digestive problems are common.
So imagine a super highway with messenger vehicles and chemicals known as neurotransmitters. Electrical signals from each neuron are converted into a chemical and sent through synapses. Pretty complicated, but it's important to know how your systems are related and impacted to understand how to feel better. Knowledge is power. Here are some characteristics found in people with fibromyalgia.
For starters, studies have shown a reduced number of skin nerve fibers on the skin's surface². Studies have also shown increased sensitivity to cold and hot sensations in Spoonies². Finally, it has also been shown that sensory nerves have heightened sensitivity, which might explain why those jeans can feel like sandpaper, and clothing straps can feel like burning knives².
As mentioned earlier, fibromyalgia research is in its infancy, and the symptoms' causes are still hardily debated and tested. Many believe the disruptions in the nervous system and central processing system are to be blamed. However, there is a different group of researchers that believe the root might start in the muscles and travel to the brain.
This study focused on the trapezius muscle because over 90% of fibromyalgia patients report pain in this area³. Pain, pressure, and tenderness were all 3 to 4 times higher than a control group of patients with other rheumatic pain conditions such as rheumatoid arthritis, Sjögren syndrome, and systemic lupus. Pressure differences remained even at rest. While this doesn't disprove the theory of Central Sensitization Theory, it does provide strong evidence to support further investigation into muscle pressure contributing to fatigue and pain.
Trauma & Mental Disorders
There are also critical psychological findings that cannot be ignored. Rates of depression, anxiety, bipolar disorder, borderline personality disorder, PTSD, and recently ADHD.¹ ⁴ Childhood and adolescent trauma are also closely related to adult fibromyalgia. Trauma includes not only abuse and violence but also negligence and negative life events. Significant stressful life events, major medical procedures, and significant accidents may also be possible triggers for the onset of fibro.
Prolonged, excessive, or adolescent stress can change how your nervous system responds. So while this doesn't mean your thoughts are controlling your pain, negative reactions that are not appropriately processed can rewire your brain, and pain can create a nasty feedback loop.
The physical markers in the HPA axis we discussed earlier make it difficult to cope with daily stress, which means the negative effects of stressful situations last longer and can lead to catastrophic thinking patterns, avoidance behavior, or inhibiting emotions.
Cognition & Social Cognition
Fibromyalgia also impacts cognition and social cognition. Women with fibromyalgia had difficulty describing and identifying feelings and emotions, particularly facial emotions indicating mental states in others, when compared to a group without fibromyalgia.⁵ In general cognition, they also had lower scores for verbal fluency, attention, free recall, verbal knowledge, and working memory, all skills required to maintain conversations with others.⁵ This was not influenced by mental health issues or other symptoms such as sleep deprivation.⁵ So, if you find it hard to hold a conversation and interact socially, it's not all in your head. Other factors also contribute to the social health of us Spoonies.
Compared to the general population, those with fibromyalgia have higher rates of overall emotional distress.¹ Also found are increased rates of stress, anger, and pain catastrophizing (thinking the worst about pain, which increases intensity, anxiety, and fear), which all cause our symptoms to worsen.¹ In fact, the greater the emotional distress or what's known as negative affect, the greater the pain intensity, irritability, physical and mental strain, functional limitations, the number of tender points, non-restorative sleep, cognitive deficits, fatigue, and the impact of the illness on quality of life.¹ The flare cycle.
Poor Body Image = Low Self Esteem = Increased Isolation
Pain can make exercising hard and lead to inactivity, weight struggles, and obesity. Higher rates have been found in women with fibromyalgia.¹ Body image leads to poor self-esteem, and lack of activity can increase isolation.
All of this makes it very difficult to feel up to being around others, even family. It makes it hard to feel good enough to participate in society. Therefore fibro warriors can feel very isolated, misunderstood, or rejected by relatives, friends, health workers, and society in general.¹ If any of this resonates with you, know you are not alone. If you have struggled to maintain friendships, check out my post Losing Friendships With Fibromyalgia and How to Fix It for tips.
BioPsychoSocial Medical Model
So, it's not that it is all in your head, but rather it affects all systems, not just the biological ones that your doctor treats. Therefore, you need to take a biopsychosocial view rather than a strictly biological one. Biopsychosocial approaches include psychological and environmental factors and physical ones when considering root causes and treatments for illness. If any of the above areas stood out to you, exploring them may be your next step. Remember, all areas need to be supported for the system to heal.
You Can Take Steps To Feel Better
The pain research has shown that there are actionable steps you can take at home, including cognitive behavioral therapy apps or workbooks, increasing your education on pain and fibromyalgia (already on the right path- YAY!), and mindfulness practices such as yoga. have all been proven helpful for managing the symptoms of fibromyalgia.
A mindfulness practice such as meditation or yoga has both short-term and long-term benefits. For example, a study found that it helped with pain, anxiety, and depression not only during the 8-week intervention but also when measured again three years later.⁶ If you are not already part of our Spoonie Yoga Program, go check it out!
Not All In Your Head
So to answer your question, yes and no. It's not all in your "head" per se, but neurochemicals, social, and environmental factors can all contribute and create quite the puzzle for a primary care provider or specialist. Be sure to share with your treating provider any and all symptoms. Suppose you do not feel respected or validated. In that case, you need to find a new health care provider who understands fibromyalgia, the myriad of systems that are impacted, and all the possible triggering factors that need to be addressed. So if you feel misunderstood, it's because science still doesn't fully understand the complicated nature of fibro. But rest assured, it's not only in your head.
Galvez-Sánchez, C. M., Duschek, S., & Reyes Del Paso, G. A. (2019). Psychological impact of fibromyalgia: current perspectives. Psychology research and behavior management, 12, 117–127. https://doi.org/10.2147/PRBM.S178240
Siracusa, R., Paola, R. D., Cuzzocrea, S., & Impellizzeri, D. (2021). Fibromyalgia: pathogenesis, mechanisms, diagnosis and treatment options update. International journal of molecular sciences, 22(8), 3891. https://doi.org/10.3390/ijms22083891
Katz, R. S., Leavitt, F., Small, A. K., & Small, B. J. (2021). Intramuscular pressure is almost three times higher in fibromyalgia patients: a possible mechanism for understanding the muscle pain and tenderness. The Journal of Rheumatology, 48(4), 598-602. https://doi.org/10.3899/jrheum.191068
Yılmaz, E., & Tamam, L. (2018). Attention-deficit hyperactivity disorder and impulsivity in female patients with fibromyalgia. Neuropsychiatric disease and treatment, 14, 1883–1889. https://doi.org/10.2147/NDT.S159312
Di Tella, M., Castelli, L., Colonna, F., Fusaro, E., Torta, R., Ardito, R. B., & Adenzato, M. (2015). Theory of mind and emotional functioning in fibromyalgia syndrome: an investigation of the relationship between social cognition and executive function. PloS one, 10(1), e0116542. https://doi.org/10.1371/journal.pone.0116542
Grossman, P., Tiefenthaler-Gilmer, U., Raysz, A., & Kesper, U. (2007). Mindfulness training as an intervention for fibromyalgia: evidence of postintervention and 3-year follow-up benefits in well-being. Psychotherapy and psychosomatics, 76(4), 226-233. https://www.fammed.wisc.edu/files/webfm-uploads/documents/outreach/mindfulness/res-mindfulness-fms-support-groups.pdf