Fear of catching the virus, of giving it to others, of being around others, of going out in public, and of wearing or not wearing the mask; these days fear abounds. It is much worse for those of us with such conditions as fibromyalgia, endlessly bound by anxiety.
When I thought it was safe for me to shop, like others, I was preoccupied with hand sanitizers, masks, hand washing, and being in a public space. I wish I could say that this anxiety has subsided dramatically. It has a wee bit but not enough to say I am comfortable being around many, other than family members or close friends. I still wash grocery packages when I come home and try to track what is and what is not ‘contaminated’…the usual nurse’s training approach to a somewhat modified ‘sterile technique’. Like thousands of others, I watch people disregard safety issues and I cringe.
This personal story of mine no doubt mimics millions of people worldwide. Canada has done comparatively well and Nova Scotia in particular has taken the right measures for diminishing large numbers, with the exception of a specific long-term care institution. I could relax a little but school is about to open, regular flu season is upon us, and anxiety begins to mount. Grandchildren are now to be avoided as much as possible. Will our world once again be subject to lockdown? The symptoms of the virus are many, but I too have suffered from most on a daily basis, excluding the fever. In my darkest moments, I dwell on the symptoms.
So, here I am, a person with fibromyalgia, anxious beyond belief, having just suffered through summer heat and humidity, identifying the stressors in my life, knowing that because of my age and other health conditions I am vulnerable. I am afraid our Premier will open our ‘bubble’ to include more than the Atlantic provinces- I distrust those from other parts of Canada to comply with the mask-wearing mandate in public spaces of our province.
More importantly, I hope that the Canada-US border will not reopen for a very long time. It is said that the comedian Robin Williams once commented that being Canadian was like living in an apartment over a meth lab. It certainly feels like that now…I hate thinking of family, friends, and neighbors to the south as people I no longer want contact with. It is a horrifying thought. It is like wishing one was in a cocoon.
Wearing a mask is difficult for me. I believe that many of us with fibromyalgia have a sensory processing disorder that is exacerbated by such things as clothing. Unless it is very soft and not too tight clothing can become an issue for me. The mask brings about the difficulty in breathing and talking but I would not wear one outside the home, nor would I ask for a medical exemption.
So, here I am now complaining about issues that reflect my white, class privilege. Yes, I can easily trigger intense fear; yes, I acknowledge that extreme anxiety such as we who have fibromyalgia are experiencing. But for the moment I am safe and cannot predict the future. I can only acknowledge these anxieties and feel great empathy for those who have died and those who are struggling with Covid19 or have after-effects from the disease.
Fibromyalgia is a dis-ease, not a disease. But as I listen to news reports of those with the after-effects I compare them to fibromyalgia and they are amazingly similar. Could it be that those who have these after-effects are highly sensitive people whose central nervous systems are compromised like those of us with fibromyalgia? This, of course, is highly speculative…
” Learn from yesterday, live for today, hope for tomorrow”AlbertEinstein
I apologize to my dear ‘old’ readers of the past for not writing blogs for many, many months. I do hope that some of you are still around thinking about this site and will join me once more. I have not had much energy this past year and most of you can understand the lapse. When one sometimes cannot bear to even open the computer because of crushing fatigue all fibromyalgia sufferers can relate. Such is my only excuse.
But this worldwide crisis has inspired me to write about not only my own feelings but those who also have the ‘pre-existing ‘ condition of chronic fatigue and its twin fibromyalgia which increases our anxiety, pain, frustration, loneliness, and fear. The questions are many but the most common: is this symptom(s) fibromyalgia or CoVid19?
It is ironic that the main symptoms of this plague are exactly those of fibromyalgia. Other than a fever I frequently have all the others that are listed. How to differentiate between what is ‘normal’ for me and what is the virus? Sore throat, runny nose, headache, muscle pain- all of us experience these on a frequent basis. The onset of a flare-up is similar to flu-like symptoms.
What is to be done? More mindfulness, frequent calming videos, exercising as much as possible in the house, going out for short walks, and if possible speaking with a therapist via phone, zoom, face time, or other means. Taking up a new hobby is encouraged but if in constant pain or fatigue this often isn’t an appealing option. It is a struggle not to succumb to inertia and hopelessness.
On the more upbeat side (if that is possible!), staying home and avoiding crowds is something our bodies yearn for in ‘ordinary’ times, so it is perhaps not as difficult for us as it is for people who enjoy a more social life. But, even then if our families living with us are not calm, quiet, and helpful during this crisis we may be overwhelmed by their constant presence.
I am one of the more fortunate ones. I live with a husband who is a caregiver. He is steady, comforting, and not prone to catastrophic thinking. In fact, my days have been more serene. Children and friends food shopped for us in the early days. Old friends have reconnected through social media and I have felt comfort away from the somewhat rushing days that I did before this self–isolation.
Its been said by so many that the world needed this rest from all the destruction caused by human consumption, air, and car travel, and consumerism. So too can our central nervous system appreciates the calm.
I am also fortunate that I am retired and I don’t have to worry about finances. My heart goes out to those who are in a dire financial state, or who live alone and are unable to find resources to help make their days easier.
I was born in the polio era with children dying every day in Canada. As a teenager, I trained as a nurse and we students were required to work for 2 months in a tuberculosis sanatorium, wearing masks, gloves, and protective gowns, always fearful we would catch Tb. Now in my old age with heart disease and fibromyalgia which compromises my mobility I have time for reflection. It is a peculiar time of life.
May 12th, the birthday of Florence Nightingale, what would she think of this pandemic? I salute my comrades as I recall the fear I had every day working with tuberculosis patients. Have we come so far from polio, tuberculosis, and other epidemics? It is time for reflection as we wait out these days, wondering what will be done by future generations? If, as I have claimed, fibromyalgia is a form of PTSD (extreme anxiety) will, even more, join us in this club of ours? It is widely thought that Florence Nightingale herself suffered from fibromyalgia.
“There is no part of my life, upon which I can look back without pain“, FlorenceNightingale.
I have had a difficult year, even being admitted to the hospital for several days with extremely high blood pressure. Now that I’ve settled down somewhat I am beginning to slowly write about my experiences, most of which were caused by extreme anxiety. I am trying to separate myself from what happened as a result of “post-hospitalization syndrome” and rephrase my negative thoughts about myself, thoughts that become almost an obsession and cause my blood pressure to rise as the anxiety escalates.
From winter blood pressure concerns to summer I have now had hand surgery for the carpal tunnel which has necessitated less typing and more sitting still. This helps with dealing with the heat of summer, and as I sit and read I often automatically begin the meditation process in a much more disciplined way. But, those thoughts that arise usually dwell on the past and future rather than the present moment.
The main thoughts I am trying to reformulate are the ones filled with disgust at myself for hating my body for the way it exposes my fears and anxieties, for not being brave enough to overcome panic attacks as I relive not only recent events but those of my childhood and younger years and frightfully wonder about my future. But, as usual, I go back to my oft-repeated definition of fibromyalgia– it is a malfunctioning of the central nervous system and what to do for it. At this stage of the summer, I can ride my stationary bike and just sit (mindfulness meditation) and read, letting my hands heal and my CNS experience quiet.
Just yesterday I noticed once again the new trend on the covers of at least two magazines: NationalGeographicand Timethat featured Mindfulness. It seems to be everywhere these days and of course, it is usually advised by professionals for those with fibromyalgia. The process is discussed in so many venues and seems simple and easy enough. It isn’t. Especially because of our heightened rambling and fearful thoughts.
The three Rs within the process of mindfulness are:Recognize, Refrain and Relax. Another way of saying this is to recognize one’s thoughts, refrain from indulging in them, and finally LETTING GO and relax, the latter being the most important-not an easy process. Our minds will never be free from thinking but with meditation, we can change our thoughts. Needing to escape from the constant preoccupation with our physical and emotional pain as we sit quietly and practice we would be reflecting on the breathing aspect of our practice in order to bring peace into our lives.
” The greatest heroes are those who do their duty in the daily grind of domestic affairs whilst the world whirls as a maddening dreidel”, Florence Nightingale
A dreidel is a four-sided spinning top. I loved the above quote but knew not what that word meant. It makes so much sense to me now as the world is certainly spinning out of control and it is the hyper-sensitive, traumatized person who suffers the most, especially if she or he works in a high-stress environment.
This week we celebrated the birthday of Florence Nightingale and I am reminded of the many nurses who write to me on this website suffering from fibromyalgia. There is little doubt that Nightingale herself was plagued with this condition. Those who do their work as responsible caring people live with the daily suffering and the trauma of others. While absorbing the pain of their patients they are often living with their own.
Those of us with fibromyalgia have an overabundance of empathy. It is not easy to disregard the emotions of others; we always anticipate the needs of people in real or perceived distress. Nurses are at the forefront where fear and anxiety are paramount and living with fibromyalgia intensifies the daily challenges. As patients suffer from anxiety their struggles are inter-meshed with their own. Oftentimes it is impossible to separate the two.
I have just completed a book about nurses in training in the 1950s and it is currently at the printers, due for release in June 2018. This book describes the lives of student nurses who worked under harsh conditions while working/studying to become RNs. They are stories of the difficulties these women experienced during their three-year training period.
The devotion to their profession and the uncomplaining ways in which they did their duty is awe-inspiring. Nurses exemplify the best of human qualities. But sometimes their own emotional capacity is overwhelmed and too anxiety-provoking. While this book is not at all about fibromyalgia, nonetheless it does exemplify the intense devotion to the caring work of those who make up the vast number of health professionals. Nurses are unsung heroes and heroines.
” PTSD is similar to Panic Attacks in that once turned on, the anxiety is fed into a vicious cycle”, DavidYeung
Anxiety, depression, and panic attacks are triplets. They live together and feed on one another. The sources of these three demons are usually childhood experience, past trauma, and family history. While panic attacks are extreme episodes of anxiety and are relatively common in the general population, their frequency of them is noteworthy in those of us with fibromyalgia.
We are prone to catastrophic thinking which often initiates extreme anxiety that can be pushed into a genuine panic attack. While the duration of them usually lasts for a short period of time, those of us with fibromyalgia, PTSD, Chronic Fatigue, and Multiple Chemical Sensitivities can experience panic more frequently, and the duration is much longer.
The symptoms are common. They include faster heart rate, the pounding of the heart, palpitations, shortness of breath, muscle tension, tingling, dizziness, dry mouth, and severe itching, among a host of others.
We all share some of the ill effects that arise from anxiety that triggers panic. We lose our ability to concentrate, have negative feelings about ourselves and the world, become restless and easily fatigued, we are fearful and always on guard that something will go wrong. The glass is always half empty. Oftentimes we aren’t even aware of the trigger that precipitated the attack but can bring it on ourselves by remembering a traumatic event.
I have recently watched a TED talk with Dr. Daniel Amen whose works I have often cited in the past. He speaks of the function of our brain and ways in which to change it, in particular using computer technology, as neuro-feedback in which a person can receive moment-to-moment feedback on the physiological functioning of the central nervous system and the brain.
He speaks of the ‘Brain Smart Program’ as a way in which imaging can provide the person with information to help in the process of changing the brain. In his view, psychiatrists are the only medical specialists who never look at the organ they are treating. But with imaging, those who are working with people with such conditions as anxiety can receive immediate feedback about the state of their brains. In my view, it is a state above talk therapy that is helpful as a first step toward understanding the root cause of anxiety, depression, and panic attacks.
Fibromyalgia is extreme anxiety of an ultra-sensitive person in which the CNS is in a state of hyper-arousal, often resulting in panic attacks. What better ways of working with changing our brains than uncovering the mystery of our condition and actually seeing the state of our CNS and brain? Anxiety= panic= flare-ups.
There IS hope: After finding someone who is a good therapist, cut down on caffeine and sugar, avoid alcohol, practice breathing exercises, engage in a movement exercise such as walking, and Chi Gong, or gentle yoga, and practice being aware of triggers that cause flare–ups, and avoid becoming overly stressed and excited. Above all, meditate regularly and practice mindfulness during your waking hours, but then I have written extensively about mindfulness on these blogs and risk boring readers!
Here I present my former yoga teacher David in an Iyengar supportive yoga pose.
Writing those words is psychosomatic, in fact, even thinking about the title makes me feel uncomfortable! Who wants to be labeled as one whose pain is thought to be “JUST in your head” implying it is not real? But, before we go off into a tailspin about that specific demeaning-sounding word, I should begin by saying what I now believe psychosomatic to mean. It certainly does not suggest that those of us with fibromyalgia are hysterics who malinger just to get attention.
But, maybe, just maybe, our pain is caused by emotions that are unconsciously deep-seated, trapped in past trauma, and ARE in our head (brain). Such emotions as anger, sadness, anxiety, fear, rage, and others can be kept in a closed segment of our minds without taking them out to examine and work with consciously. After all, pain perceptions come from our body’s nociceptors, funneled up to the brain. Psychosomatic does not mean the pain is not real, but that pain comes from the brain in the stored memories.
Being female, a person of color, economically disadvantaged, of marginalized races or ethnic groups, or a sexual orientation that differs from the majority, is disabled, or anyone who has been victimized/abused in some way, or has been taught to care for others to the exclusion of themselves can usually result in a plethora of thoughts and feelings that eventually evoke painful body experiences. Other types of pain, like that from surgery or an accident, also become stored in our brains inciting fear upon recall.
What if those thoughts of emotional or physical trauma become lodged in our brain (the amygdalawherein lies the ‘flight or fight’ tendency) and are expressed as pain in various parts of our bodies? That is what I mean by psychosomatic. Our brain has stored those unhappy emotions and feelings and they may manifest themselves through painful bodily sensations. The brain then takes those stored unpleasant memories in the unconscious part of the brain and when stress or excitement occurs, activates the nervous system to take flight or fight because there is perceived danger!
As Dr.Peter Levine suggests in his book Waking the Tiger Healing Traumathere is another aspect to all this, that is freezing, that aspect within the nervous system that freezes these emotions. I think this can only occur in the highly sensitive person because not all people who have experienced sexism, racism, classism, or other kinds of abuse/bias/prejudice or physical trauma develop fibromyalgia. This highly sensitive/overly empathetic person can be described as having ’emotional intelligence’.
Read: The Body Has a Mind of Its Own by Sandra and Matthew Blakeslee, particularly Chapter 10, (which is a phenomenal book by the way). The Blakeslee duo cites Dr. Hugo Critchley whose research found that people with greater empathy have thicker gray matter in the right frontal lobe (the insula) of the brain. My question would be: is this because of lifelong highly empathetic tendencies from which the thickness evolved as a result of early socialization or was the person born that way and if so, why more so with women? The authors suggest that it is because of the higher level of testosterone in men which makes them less empathetic. Once again, in my search for answers, I am left in a quandary. Is it nature or nurture or both?
What if the pain from the unconscious part of the brain expresses itself with tension in a particular body part and that area becomes somewhat oxygen-deprived, causing pain? This is the view of Dr. John E. Sarno in his 2006 book The Divided Mind The Epidemic of Mindbody Disordersin which he discusses fibromyalgia is somewhat lengthy excerpts. If he is correct (and I am certainly not sure about this), then we have reason to believe that we have been over-medicalized by the health care system.
How do we get to those unconscious thoughts and rid ourselves of pain and are they truly frozen? Are these emotions actually the root cause of our pain? Dr. Sarno has specific ideas about this. His view is that only through mind-body medicine can we begin to heal. I urge readers to find blogs or books about this and other branches of psychotherapy, like somatic psychology and in particular other issues related to brain/mind/body such as brain mapping and neuroplasticity.
The more that we fibro sufferers learn and unlearn the more we can help one another understand the mysteries of this syndrome. Personally the more I read the less sure I am about anything, but slowly some insights are evolving, although at a very basic level of understanding! It is easy to remain a skeptic but we must continue our search for new approaches to dealing with pain. But all I read seems to underscore that constant awareness through mindfulness meditation, and deep diaphragmatic breathing in a disciplined way is a primary route to healing.
All the scientists whose work I read seem to concur. I don’t know if fibromyalgia is psychosomaticor not, but it deserves our attention, and if people suggest to us “it’s just in your head”, we can say “yes, it is, because our minds and brains are so highly intelligent”
It has been a long and interesting journey beginning with my book in which I laid the foundation about why women are more prone to developing or at least reporting FMS, and my conclusion that it is actually caused by an over-aroused nervoussystem. However, while this was the first step, and the primary one, more has been revealed to me and I am very excited over the unlimited hope there could be for us all.
I still don’t have all the answers and it may be that I am presenting information that is not quite accurate, but it has been a steep learning curve and requires much un-learning, which is said to be more difficult than learning. It all began with my physiotherapist, Nick Matheson who brought me to a path that I had never traveled down before, that is, to explore the relationship between pain and the brain, rather than looking simply at fibromyalgia as the result of a hyper-aroused nervous system.
I am not talking cure but at least some cause for not feeling completely hopeless. Let me begin with a very brief discussion about the nervous system and THE BRAIN. Although not an easy task, I believe it is really possible to train the pain away from our brain. Maybe not forever, but certainly more often than we do now. Aha! I have already given away the conclusion without explaining how I reached it. Here we go now.
There are approximately 100 billion nerve cells in the brain which is amazing considering that it weighs only about 3 lbs. The complexity of this is mind-boggling! (Pun intended). The brain is a large network of interconnected neurons and the communication that takes place between them. A synapse is a connection between two neurons. Important information is filtered through to consciousness and it may amplify the signal to hyper-awareness and hyper–algesiacan develop. This is a heightened awareness of pain, which afflicts those of us with fibromyalgia.
The spinal cord and the brain make up the Central Nervous System. The brain takes messages to the Peripheral Nervous System which controls the limbs and organs of the body. Within this system is the Autonomic Nervous system which affects the Sympathetic and Parasympathetic Nervous Systems. Now here are the relationships between fibromyalgia and these two last systems in particular. The Sympathetic system is the ‘fight or flight warning which secretes too much adrenalin and cortisol (found in the adrenal glands on top of the kidneys) in those of us with fibromyalgia, that is, the brain keeps repeatedly warning this system to be fearful. Our nervous systems become hyper-aroused and freezing occurs, which is another aspect of the fight or flight concept.
The brain does not allow the Parasympathetic system to do its proper job of ‘rest and relaxation and then work to maintain a balance between the two systems. But we can retrain our brain to overcome this chronic hyper–arousal! That is the wonderful news that is exciting to neuroscientists and psycho-neurologists who have uncovered the plasticity of the brain. New emotions can be learned which is not any different than learning a skill like playing chess or tennis. It requires time and discipline but with practice, the brain is built to allow us to train for positive emotions, rather than the painful ones that plague sufferers of fibromyalgia.
Here is a conundrum: what, in fact, is the difference between the brain and the mind? Are they the same thing? As usual, I ask more questions than I answer, but this one feels like it is important and I can’t really provide the answers. Nick says that “the mind emerges as the function of the physical structures”. But, in fact, it might even be plausible to suggest that there isn’t even a mind, since it cannot be seen, and all that there maybe is only a brain! From the perspectives I have read the mind is our experiences and the ability to become aware of such things as our surroundings.
It is our consciousness and our thoughts. Within this view, the mind comes after the brain. It embraces the higher functions of the brain such as our personality, reason, memory, and emotions. So how about us finding ways to circumvent the mind and focus on the brain itself before it gives those messages of pain (or in fact, to give different messages) to the mind? Or even more daringly how about suggesting that the mind is non-existent and maybe we should be concentrating only on the brain, which does those functions that are said to be in the mind?
The brain itself is a biological matter and can be found and touched. The mind cannot be seen by anyone, nor is it biological. It reminds me that when we hear about the body/mind connection or body/mind/spirit what we are actually talking about is actually more concrete. Neither the mind nor the spirit can be seen or touched. I prefer instead body/brain/emotions; in this triad, only emotions cannot be seen or touched but they can actually be measured in some way. The body and the brain are tangible. It is those biological aspects of pain that we hope to change so that the brain receives different messages than they have had; ones that bring about more hopeful and happier emotions.
I recognize that there may be criticisms about letting go of the concept of a ‘mind’ and instead focussing only on the brain. This will be so, particularly in the Buddhist tradition which suggests that there is a distinct difference between the brain and the mind (and spirituality which is another nebulous term within this context). Nonetheless, I believe there is a more concrete aspect to embrace in this search for the impact of pain on the mind.
The brain has a lifelong ability to reorganize neural pathways and has the ability to change with learning. This is called brain plasticity. The advances in research that have been conducted have revealed that the brain can change in response to experiences. It can be trained by learning new ways of responding rather than the constant reacting to stimuli (particularly to the real or perceived needs of others) which is common in fibromyalgia. It isn’t easy but with awareness, it can be done! In short, the brain is not static; it can be retrained. The pattern of our overly empathetic emotions which appear to be solidified within us (for those with fibromyalgia) can be trained (changed) by the brain to differentiate between necessary compassion and empathy responses and overly empathetic reactions to others (as in being an ’empath’), to that which is more realistic.
The anxiety and stressful emotions which plague our everyday lives are in our brains but can be retrained to send different messages to become happy and peaceful, while minimizing the over-stimulation of the adrenals, thereby reducing pain (in the brain). Rather than repeating these same patterns of responses to pain brought about by stored memories, new neural pathways can bring about needed changes to our thoughts and emotions.
It sounds so easy. It isn’t, but the work of such people as Jon Kabat-Zinn (Full Catastrophe Living), David Butler and Lorimer Moseley (Explain Pain), Craig Hassed (Know Thyself), Richard Davidson ( his work on the regulation of emotions), and Daniel Amen (Change Your Brain), Norman Doidge (The Brain That Changes Itself), Sandra and Matthew Blakeslee (The Body Has a Mind of Its Own) among many others who built upon the work of earlier neuroplasticity Aleksandr Luria, Michael Merzenich, Paul Bach-y-Rita has led me to believe that there are strategies which we can employ that will help in this retraining process. It takes hard work and discipline. We are the ones we have been waiting for. No one else can do this work for us.
It is the work of Diane Jacobs and Nick Matheson (physiotherapists) which has recently brought me to these insights, although Peter Goodman, as an RMT, and psychotherapist (and now an osteopath, and expert in this domain as well), many years ago first started me thinking of these issues. However, brain research is such a fast-growing science that new revelations are changing the way scientists are thinking every day and it isn’t easy to keep up. For those of us who are not physiologists or well-schooled in that discipline often all of these findings are not easy to understand.
Furthermore, although I have been toying with these ideas for quite some time, what I present here is an overly simplistic view of the complex physiology of the brain. Neuroplasticity, brain mapping, the interconnectedness of various parts of the brain with the body, a more in-depth understanding of the difference between the mind and the brain (if indeed the mind is an actual entity) and more comprehensive knowledge about brain science are a bit beyond me at this point. But I am certain that with a deeper scientific knowledge of the brain and its ability to change, we are on the right path to a greater understating of many illnesses and diseases. The future is with more evidence-based knowledge of the complexity of the brain.
The work of Dr. Bud Craig and the interoceptive pathway fits well with the pain of fibromyalgia. Much of his work is difficult for me to understand but I found an article of his from The Wellcome Trust on “Mapping pain in the brain” that is a bit easier to read. We are told that neuroplasticity is our ‘friend’ and that it requires novelty, attention, and repetition to change the brain. Or as the Buddhist Kalu Rinpoche has suggested: “Take a simple activity that requires attention but not much intellectual effort, and do it again and again”.
That, by the way, is why I have taken up the new project of hand sewing a quilt, something I have never done before. In fact, it might not require more understanding of the brain physiology at all on my part, but rather a constant discipline, attention moment to moment to my breathing, and remembering to move my body!
I quote here from the brilliant Diane Jacobs who has given me permission to do so, and who says that “the aim is to increase the ability to self regulate”:
One of her important pieces of advice is to remember that hurt does not equal harm and this is important for those of us who have persistent pain which changes in location and nature. “Letting pain be our guide actually increases our risk of developing ongoing pain-related anxiety and avoidance”, Jacobs writes. We must learn techniques such as mindfulness-based approaches, reframing our stories, and challenging assumptions to unfreeze our responses to chronic pain. Kabat-Zinn’s clinic in the US and Hassed’s work in the medical school in Australia have succeeded in bringing changes in medical curricula, so the hope is building that physicians, as well as other health professionals, will help us to help ourselves.
Most importantly, it is diaphragmatic breathing that remains one of the most significant ways of changing the image and stories of pain within our brains. Keeping an activity diary will help us to determine patterns over time and “you will have charted your own brain’s neuroplastic capacity plus your own determination”, says Jacobs.
Above all, “motion is lotion” and movement is crucial to our well-being. Using our bodies to train our brains means that there is indeed a connection between body/brain/emotions. It is not hopeless to live with fibromyalgia. Maybe we can’t cure it but we can learn ways to avoid catastrophizing as our constant reaction to each new pain, or the old pains that never seem to leave. As Kabat-Zinn has written:” Being told that you have to learn to live with pain should not be the end of the road- it should be the beginning”.
“If you look deeply into the palm of your hand, you will see your parents and all generations of your ancestors. All of them are alive at this moment. Each is present in your body. You are the continuation of each of these people”, Thich Nhat Hanh
Since I am convinced that fibromyalgia is the result of a hyper-aroused nervous system, I wish I knew for certain if it is caused by early inadequate parenting by our parents and/or difficult childhood experiences in highly sensitive persons, or if we are born with highly sensitive nervous systems. I have my hunches, built upon numerous interviews and talks with many people (mostly women) over many years. In particular, my view is built upon my own experiences.
Therefore, I will go out on a limb and suggest that we are not born with an easily aroused nervous system, but rather it slowly develops over many years as a result of our early socialization. Yet, even saying such a thing brings up the issue of children with fibromyalgia. Maybe, just maybe, they were born with the predisposition to this condition. What a dilemma! More questions than answers once again. Maybe it can be both nature and nurture. Parent blaming has become something of a modern-day occupation. That is certainly not my intent. Who among us had perfect parents or are we perfect parents?
What did our parents know about parenting? Like most of us, they passed on the values and beliefs they had acquired from their own parents. Generally, those of my parent’s generation (they are currently 90+ years old) believed in a patriarchal, strict household without much awareness of the psycho-social needs of their children. Life was difficult for the people raised in the Depression-era and many had struggles that caused overwhelming challenges when they became parents.
School and church were strict and frightening places for their offspring, as they were for them, and we 1950s kids received little sympathy as we accepted the status quo without question, as they did. I often still remember the horrors of Catholic school, fainting spells, hyperventilating at night, sleepwalking, and nightmares. There was very little to soothe my nervous system as my mother was herself a fearful woman and for many years I was an only child subject to her worries and anxieties, becoming her mother.
My father has what is termed a ‘borderline personality disorder’ and is subject to numerous rages but I was never ‘physically’ or ‘sexually’ abused by anyone as a child. Psychological abuse is another issue, however, which can be just as abusive. School and church also experienced that were harmful to my psyche. There I was constantly on guard as a nun in a rage was not to be reckoned with at any cost. I would never have dreamed of rebelling; instead, I became super vigilant.
My parents would not have understood why I was having these fainting spells, nor would have many of that era. I can’t blame them. The information we have nowadays is so prolific that we can understand better what a healthy environment should be like for a child to grow to be strong and confident, without living in a state of situational generalized hypervigilance. But, even as I raised my own children I did not know what I know now watching my young grandchildren.
I made my own kind of mistakes, like most parents. Like those of us with fibromyalgia I carried the weight of the world on my shoulders, I had an intense belief in an obligation to my family of origin as well as to my own children with a sense of duty that was unrealistic. I was always second-guessing someone’s needs and would self-reproach myself for the smallest negligence of what I considered my duty. Many women and men are like that. Many children develop this hypervigilance early in life.
The cost of such high expectations of self is an over-aroused nervous system that is never in a state of rest. So what is to be done to help tame this self-imposed overly empathetic, sad, and tender heart of people with fibromyalgia? Undoing a personality that developed early in life is not an easy task. Other than psychotherapy I see little choice other than mindfulness meditation (or other peace-inducing techniques) and physical touch which is meant to be soothing. But, what kind of touch?
I have recently been reading various approaches to manual therapies written almost exclusively by physical/physiotherapists and MFR practitioners. To be honest I understand very little except to realize that the language of these professionals is not easy to decipher. There appears to be a great ongoing debate about the limited value of myofascial release, which does not allow the client to avoid dependence upon the therapy.
Among the many issues discussed, one which is rather interesting is whether or not it is possible with MFR to bring forth repressed memories. Why this is appealing to me because I am trying to understand the relationship between pain and the brain in the hopes that I can grasp the concepts that can help me in my day-to-day struggles. It would seem that the controversy is among those therapists (not all, of course) who believe that with the release of the fascia the person begins to acknowledge painful experiences that have been stored in our memories. At least this is how I interpret some of the debate.
But, the issues are not all about repressed memories. Rather, there are theorists who argue that the model of MFR is one that does not help the client to avoid feelings of helplessness. These pain scientists are the professionals, like Diane Jacobs who focus more on manual therapy which recognizes how touch affects the Central Nervous System (and the brain) and who educate the client to understand this relationship. They argue that those who believe that fascia release is a means to bring about relief (albeit temporary) without acknowledging the client’s role in changing the nature of our own brain is to do a disservice to the person who suffers.
They recognize that it is important to help the client understand the relationship between pain and the brain and involve the client in the process of understanding this rather than being a passive receiver of manual therapy. This is a quote from Diane Jacobs’ site regarding Melzack’s Neuromatrix Model which she embraces. This model “allows for you the patient, to see yourself in the center of your own experience, not only part of the big picture but the one who will help your own brain turn itself around”.
I realize that this is a very brief and simplistic overview of the arguments regarding pain but my point is: can MFR (or Cranial Sacral work) actually help my brain to heal from the past trauma of childhood if I don’t better understand the nature of pain? I have had many various kinds of ‘massages’ if indeed some MFR practitioners (many of whom are PTs) are willing to be called massage therapists. In my personal experience, none of them have resulted in experiences that are akin to bringing up repressed memories.
In my view, massages could, in fact, soothe the body and mind, but at best the effects cannot be long-lasting. Yet, they do bring temporary relief and yet again, they are a great expense. It seems to me that if we are to deal with past experiences that have left ‘scars’ in our psyche (brain), then trained counselors are the professionals we should seek out, rather than massage therapists.
Having said that I have also been reading that bringing up painful past trauma is not good for the nervous system since it reactivates it. Instead, we are encouraged to remap the brain and not dwell on the wounds of the past. (For a very comprehensive understanding of the mind/brain that is much easier to understand than most of what is written by those whose research is focused on consciousness.
I have had MFR, Rolfing, Neuromuscular, and soothing types of massages such as reflexology, and jin shin. None of them have left me wanting to explore past psychological pain, although most have released tight muscle knots. Some of the types have been physically painful, and others have been soothing, but none of the therapists have tried counseling at the same time as treatment and for that I am grateful. After many years of talk therapy, I have begun to realize that the stories I tell myself need to be changed. Furthermore, the ways in which I absorb the pain of others need to be addressed.
It is the gentle work of such PTs as Diane Jacobs, and my own physiotherapist, Nick Matheson which seems to me to be the most promising, that is, that which directly addresses manual therapy of the skin in an effort to gently and slowly send positive messages to the brain while simultaneously educating the client to understand the nature of pain, and equally as important, the issue of physical movement.
We can’t undo the life traumas that have affected our nervous system(brain/mind/consciousness), but we can try to understand how we are not completely helpless and doomed to a life of turmoil without a sense of hope. We do not have to care about other people’s happiness to the exclusion of our own healthy mindset. We are not personally responsible for everybody else’s happiness (or pain); being in that headspace absolves others from caring for themselves. It is foolhardy to believe we can solve other people’s problems. This is our daily challenge, particularly since living with pain is a constant in our lives.
We Canadians are always so happy our Thanksgiving falls in mid-October when it’s harvest time; the leaves are gorgeous and in full color and if we cook a turkey it is still a long way till Christmas and we can enjoy another one before the year ends without being tired of it! What we also love is that it is close to Halloween and those sweet children with their little outfits! Autumn is so wonderful where I live!
But enough about lovely food and celebrations and more about less happy thoughts which are often self-imposed and can defeat us so rapidly.
It is easy for someone suffering from the chronic pain of fibro to catastrophize about pains that seem more unusual than the ones we live with every day. In November 2007 I began to have sore hips and after a while, the pain settled in my left hip only. It was and remains extremely painful. The saga of that hip is told here as the journey to date has been a long one. The resulting anxiety and apprehension are a struggle I have to contend with, in spite of serious attempts to be mindful of how counterproductive they are to my well-being.
But, I let my ‘sore left hip’ overcome me until I finally had an MRI last week and found out what has been going on. Although I had seen an ortho specialist in Arizona in February and had an x-ray, in spite of persistent pain I did not have any further imaging, much to my chagrin now. I was told then that it was bursitis. Months of physiotherapy did not help the pain over the spring and summer, in fact, most movements made the pain worse.
I will tell you the end of the story now and then go back to the middle of it, because these days I don’t think in a linear fashion anyway. These words may not mean anything to many of you and they certainly did not to me. Findings: Extensive tearing of the gluteus minimus tendinous insertion on the greater trochanter. There is associated severe minimus muscle atrophy. Tendon tearing likely extends into the gluteus medius insertion on the greater trochanter.
So there you have it. Clear as mud? In short, I have a broken left butt and the pain is where the muscles insert around the hip! The pain is extensive and I am having a difficult time walking and sleeping. My family and friends are very sympathetic but they have many butt jokes to share with me. So, in spite of the pain, I do think they are clever and it is better to laugh than to cry. They aren’t being unkind. I don’t know how I injured myself and the process of recovery is going to be very slow and I am worried it will never completely recede. It is likely I did too much physical exertion moving my 90-year-old parents to an assisted living facility and tore (actually shredded) those buttocks muscles.
The point of sharing all this with you is not to delve into the actual physiology of those muscles but to share what it is like living with anxiety when something else goes awry in an already overly sensitive body. Stress, anxiety, worry, sometimes panic, and apprehensiveness can all lead to catastrophic thinking when a person is chronically fatigued. When a body is challenged by something unusual, that is very painful, the mind/brain activates the autonomic nervous system and stimulates the output of cortisol and adrenalin (see other blogs on this site about that).
The result is that the nerve cells become ‘over excited’. While I realize that I have simplified what happens when there is a chronic stress response I do so not to dumb down the physiology of an over-stimulated nervous system, but rather to point out the vulnerability of the person with fibromyalgia when unusual stress occurs. John Sarno writes: “Pain, anxiety, and depression are not symptomatic of illness or disease. They are all part of the normal reaction to frightening unconscious phenomena”,
Those of us with this hyper-aroused nervous system of fibromyalgia realize how little it takes to activate the autonomic nervous system (ANS) and disrupt the body’s internal balance and become stuck in an over-aroused state. Needless to say, the result is unclear thinking and catastrophic thinking. So, this is what this year has been like for me. Now that I know what the ‘new’ pain is about the level of anxiety has subsided considerably. But, I fear it is, as usual, a temporary state until the next jolt to the ANS! That remains my challenge: learning to work within a world that is filled with change, often unpleasant (called ‘life’), while trying to maintain balance and avoid apprehension.
So far, the only thing that has helped me in this regard has been “mindfulness meditation”, which I have discussed in another blog. Remembering to take deep breaths would help considerably but in times of anxiety, I usually forget to do so. This all takes discipline and that isn’t easy when days are disrupted with chronic pain and fatigue, particularly when new stress circumstances arise. Still, like all of us with fibromyalgia, we keep on trying in spite of those who challenge us with their beliefs that we are ‘hysterics’ (mostly many health care professionals and insurance companies).
We have sensitive bodies, not by choice but by circumstances, maybe genetic, maybe early socialization, nonetheless we are braver than the doubters think we are. We just have to learn more about our brains and how they affect our nervous systems with those stored memories of pain! Sandra and Matthew Blakeslee write: “And being at war with yourself, even when it is all happening beneath the level of your conscious awareness, is a miserable experience”.
Fibromyalgia is often described as a silent battle. For millions around the world, it’s more than chronic pain—it’s an invisible weight that infiltrates every part of daily life. But for a surprising number of sufferers, there’s another distressing symptom that rarely gets the attention it deserves: the unrelenting itch. This is not your average rash or allergy-induced itch. This is the persistent, maddening sensation that feels like it’s burrowed deep beneath the skin—a torment you simply cannot scratch away.
This phenomenon, often overlooked by physicians and misunderstood by sufferers themselves, has a profound impact on quality of life. Understanding why it happens, what triggers it, and how to soothe it could unlock a critical piece of the fibromyalgia puzzle.
The sensation of itching in fibromyalgia is neuropathic in nature. This means it is caused by nerve dysfunction, rather than something happening on the surface of the skin. Just as fibromyalgia causes widespread pain through overactive nerves, the same hypersensitivity can manifest as persistent itchiness.
People with fibromyalgia often describe this itch as deep, electrical, or stabbing—similar to the pain they experience. It can come in waves or be constant. It may worsen at night, disrupting sleep, or flare up during stress and temperature changes.
Why Does It Feel Like You Can’t Scratch It?
This itching is not triggered by histamine like traditional allergies, which is why antihistamines often offer little to no relief. Instead, it’s believed that the nervous system in those with fibromyalgia misfires, interpreting signals from the brain as pain or itch, even when there is no physical cause.
This explains why the sensation feels impossible to scratch. The problem isn’t on your skin—it’s in your nervous system. Scratching may offer a momentary distraction, but it rarely brings actual relief.
Common Triggers That Worsen the Itching Sensation
Understanding what can make fibromyalgia-related itch worse is key to managing it. Here are 15 of the most common but often overlooked triggers:
Stress and Anxiety – These can heighten nervous system activity, making symptoms spike.
Hot or Cold Temperatures – Extreme temperatures confuse sensitive nerve endings.
Tight or Synthetic Clothing – Friction against sensitive skin may cause irritation.
Skin Dryness – Although the root is neurological, dry skin can exacerbate the sensation.
Poor Sleep – Sleep deprivation increases pain and itch sensitivity.
Hormonal Changes – Fluctuations during menstruation, menopause, or thyroid dysfunction can trigger flare-ups.
Certain Medications – Especially opioids and antidepressants that affect nerve signaling.
Sugar and Processed Foods – These can increase inflammation and aggravate nerve responses.
Fragranced Lotions or Soaps – Even mild scents can irritate nerve-sensitive skin.
Alcohol Consumption – Alcohol is known to inflame nerve pathways.
Vitamin Deficiencies – B12, D, and magnesium play a role in nerve health.
High Humidity – Moist environments can make skin feel sticky and increase tactile sensitivity.
Excessive Sweating – Can cause further irritation and amplify itch.
Caffeine Overload – Stimulates the nervous system and may intensify symptoms.
Environmental Allergens – Dust, mold, or pollen can complicate the sensation.
Relief Strategies That Actually Work
While there’s no universal solution, a multi-faceted approach can help reduce the severity and frequency of fibromyalgia-related itch. Below are some strategies grounded in neurological care and skin sensitivity management:
1. Topical Agents Designed for Nerve Pain
Capsaicin cream or menthol-based rubs can desensitize nerve endings and provide short-term relief. Although these won’t fix the underlying issue, they may help soothe flares.
2. Mind-Body Practices
Meditation, yoga, and deep breathing exercises calm the nervous system. Reducing stress decreases the chances of triggering itch responses. Many patients report fewer symptoms with daily mindfulness routines.
3. Gentle Skincare Routines
Using unscented, hypoallergenic moisturizers keeps the skin barrier intact and helps minimize irritation. Lukewarm showers followed by rich emollients can soothe irritated skin.
4. Neuropathic Pain Medications
Medications such as gabapentin and pregabalin, often prescribed for nerve-related pain, may reduce itch sensations in fibromyalgia. These must be prescribed and monitored by a physician.
5. Cooling Techniques
Cold compresses or cooling sprays offer temporary relief. Some find relief using frozen gel packs applied gently to the most affected areas.
6. Diet and Nutritional Support
An anti-inflammatory diet rich in leafy greens, omega-3s, and antioxidants supports nerve health. Consider supplementing with B-complex vitamins, magnesium, and vitamin D after consulting a doctor.
7. Sleep Hygiene
Prioritizing sleep can significantly reduce the frequency of flare-ups. Establish a calming bedtime routine, limit screen time, and consider natural supplements like melatonin if approved by your doctor.
One of the cruelest aspects of fibromyalgia-related itch is its invisibility. Unlike rashes or welts, this itch leaves no visible mark. This often leads to misunderstanding from others and feelings of isolation. Patients may be told it’s all in their head or that they’re exaggerating. This dismissal can intensify stress and deepen the struggle.
A key part of healing is validation. Knowing that the itch is real, neurological, and shared by many fibromyalgia patients can provide relief in itself. Support groups—online or in person—can also be powerful tools for coping and understanding.
1. Is itching a recognized symptom of fibromyalgia? Yes, though not as widely recognized as pain or fatigue, chronic itching is a legitimate symptom tied to the nervous system’s dysfunction in fibromyalgia.
2. Can antihistamines help relieve the itch? Typically, no. Since fibromyalgia-related itching is neuropathic, not allergic, antihistamines are often ineffective unless there’s an additional allergy present.
3. What type of doctor should I see for this symptom? A rheumatologist familiar with fibromyalgia or a neurologist with experience in chronic nerve pain may be best equipped to help manage this symptom.
4. Can changing my diet really make a difference? Absolutely. Many patients find that reducing inflammatory foods and focusing on nutrient-dense meals helps decrease nerve sensitivity.
5. Is there a cure for fibromyalgia itching? There’s no definitive cure, but consistent symptom management through lifestyle changes, medications, and support can dramatically improve quality of life.
6. How can I explain this symptom to others? Describe it as a nerve-related sensation similar to phantom limb itch—real and distressing, though invisible. Sharing educational resources may also help.
Conclusion: You’re Not Alone in the Struggle
Fibromyalgia: suffering with the itch you can’t scratch is more than a frustrating phrase—it’s a lived reality for many. But with better understanding comes better management. Always concern doctor before taking any medication and therapy.
