Sit quietly for a minute and imagine this stream with leaves quietly floating by in the water.
Now think of the many thoughts, that are like a barrel full of monkeys, aggravating your mind, flitting around uncontrollably. With each thought (or monkey) that arises, a place that thought on a leaf and imagines it floating away. The thoughts will come non-stop, but in between thinking of the leaves remember to focus on the breath. Keep up thismindful/ meditativestrategy, gently allowing each thought to drift away on each new leaf you see in your mind.
This is a somewhat similar practice that I recently experienced in a mindful/meditation group. It can be very helpful for those of us with fibromyalgia whose minds (brains, Central Nervous Systems) are in a constant state of hyper-arousal. In fact, mindfulness meditation is probably THE most useful strategy we can undertake when our hyper-vigilant CNS is in overdrive, which is, almost always.
Meditating daily for 15 to 20 minutes requires discipline. It can be done, but it isn’t easy. To be mindful is to be present every moment, aware of our thoughts and the emotions that arise because of our response to them. This is even more of a challenge, especially with a fibromyalgia mind which is in a constant state of turmoil. We find we judge ourselves even more critically than we do others. We lack self-compassion.
We believe the sky is about to fall at every new change in our physical and mental environment. Our minds are racing towards the next activity and we feel like a failure because we can’t keep up the same pace we once had. We feel hopeless and for a while think that we need new medications. Then, when they don’t help very much we begin the cycle once more, rushing around, bringing on a flare-up, over-exercising, feeling anxious, then depressed as those challenging symptoms incapacitate us.
We tell ourselves to pace but when we fail to do so we become our worst critics. The mind flits around from one thought to another. We forget to remember our breath which is often shallow and not relaxed. We are the embodiment of anxious, disquiet minds (and bodies), holding us in captivity.
Mindfulness is easy to describe and the most difficult to practice. But, there are few choices, except to live constantly struggling with this unruly mind of ours. Paying attention, on purpose, without judgment, and living in the moment is a way to break the cycle of an unquiet state of mind. When I turned 70 my dear spouse gave me this vase that has the inscription: “Remember to breathe”.
“We must cultivate the courage to look deeply, with clarity and courage, into our own suffering”, Peter A. Levine
Dr. Levine is the world’s leading expert on the study of stress physiology. I began reading his works years ago when my physiotherapist suggested Waking the Tiger and I have not looked back since. His theories resonate with me. It was in 1969 when he began his work on the mind/body healing approach which developed when a client came to him who had panic attacks, agoraphobia, and fibromyalgia.
When words came out of his mouth and he said to her: “There’s a tiger in your chest. Run.”, he was surprised by his own language. Levine is the originator, developer, and Director of The Somatic Experiencing Trauma Institute.
I often have a tiger in my chest, or, to be more specific it is in my head, that is, my brain. Luckily the brain is highly changeable (plastic) and can be transformed from the overly alert, hyper-vigilant, ruminating organ of those of us with fibromyalgia, chronic fatigue, and other medically unexplained syndromes. But, what have these brains of ours done to our bodies in the meantime, generally as a result of trauma in our early personality developmental years from which evolved we highly sensitive persons?
The brain controls our physical functions and sensations. It affects our balance and coordination. It processes and sends out messages to different parts of our bodies and those of us with fibromyalgia who suffer from the many symptoms do so because of the fear messages from our brains. We have brains that are overly reactive and suspicious of many daily living experiences like weather changes, loud noises, bright lights, unusual smells, large groups of people, and excitement of any kind, pleasurable or not, resulting in becoming overly cautious about even ordinary things of the world.
We live with excessive anxieties/fears. We are people who have a highly sensitized nervous system and that is what causes fibromyalgia and chronic fatigue. But, there are others who think we have an actual disease, rather than a dis-ease. I believe we have converted our extreme anxiety into bodily sensations. They are real, extremely painful at times, causing generalized fatigue, and an inability to exercise strenuously so much so that exertion of any kind often exhausts us and can cause a flare-up. This condition is called ‘conversion disorder‘.
Does that suggest we are malingering, hysterical, weaklings? We cannot label ourselves negatively but must have self-compassion as our pain is as real as if it was caused by a virus, bacteria, microbe, or any other physiological actual disease. Conversion disorder might seem like a negative label but I think that having such a name encourages us to explore our own mind/brain for the ways in which we have handled past trauma in our lives and to view ourselves kindly as highly sensitive persons.
In fact, we are as Elaine Aron, the originator of the concept of the highly sensitive person has described like canaries in a coal mine. The world needs more empathy and sensitivity and we have plenty to share. Unfortunately, we have so much that we are over-extended. But, there is hope for us. We can’t completely eradicate fibromyalgia from our highly sensitive selves but we can exercise moderately as movement is crucial.
Meditation and quiet time are highly recommended. A hobby that is creative and new to us tames our brains and leads to new pathways as the path to the pain center is overly worked. Overmedicating is not the answer and is usually highly ineffective.
A little medical cannabis oil can help the pain. It has helped me.
We are the experts of our own lives and must have a great deal of compassion for ourselves as we find so often that others do not.
A very new book has just been published by Carolyn Thomas: A Woman’s Guide to Living with Heart Disease, Baltimore: Johns Hopkins University Press, 2017. It is one of a kind! Finally, a book that allows the woman with heart disease or those with a family history of heart disease, to pour over it and sigh with relief as questions about the leading cause of death among women is now in print as a source of expert information. Furthermore, it is written in a style everyone can understand.
I have been following Carolyn’s blog Heart Sisters for the past four and a half years since my own heart attack. Any questions I have had about my poor little damaged heart have been answered, not by a cardiologist, but through Carolyn’s blogs. She has been my salvation these many years. We have never met face-to-face even though we live in the same country. Canada is vast. I live on the east coast, and she is on the west coast of this second-largest country in the world. But though we live thousands of miles from one another we have become friends, sort of like the pen pals of yesteryear.
When the American women’s health collective Our Bodies Ourselves first decided many years ago to acknowledge 22 women in the world who had contributed to women’s health, we were the only two Canadians to be so honored. Carolyn contacted me through this website of mine and a friendship was created. I was not particularly concerned about heart disease at the time but that was about to change. I did, however, acknowledge that fibromyalgia and heart disease had many attributes in common. Both were chronic and while one was life-threatening the other was not.
One could be treated with life-saving medications and treatments, while the other was not successfully managed with medications. More research on heart disease in general, (but not specifically for women) was available, while fibromyalgia was still regarded by many to be malingering, especially since it appeared to affect mainly women.
However, what we shared in common was that both conditions are invisible and many of the symptoms are alike. Both seriously affect the quality of life. Furthermore, in terms of the commonality of these conditions, research about women living with fibromyalgia and heart disease was sadly inadequate. But, importantly, there is a very significant difference. Heart disease is an actual disease, while fibromyalgia is a dis-ease of the central nervous system.
What has it been like for me, living with both? I seem to be constantly in a state of uncertainty. I often ask myself if this is a symptom of my heart or am I having a flare-up of fibromyalgia? Should I see my family doctor? (I don’t have a cardiologist. I was told after my labeled ‘major’ heart attack and stent, that I was “good to go” and unless something new developed my family doctor could handle any concerns I had! I didn’t receive any advice from cardiologists or nurses in the hospital before discharge, although I was given a pamphlet about diet and exercise.)
But, I don’t bother my family doctor about fibromyalgia issues as there isn’t anything she can do. I am my own expert on this dis-ease. I would, however, book a visit with her if I was convinced it was a heart issue, but I am usually unsure, so I ruminate and wait it out. Many of the symptoms of the two conditions are alike. Both can cause pain and both can have debilitating fatigue, among a host of other symptoms in common.
Dizziness, shortness of breath, increased anxiety and what they mean for me can be very upsetting. The dilemma has caused considerable angst these past four and a half years. Added to which my trusted family doctor of 28 years recently retired. He was great support for me and I don’t know the new female doctor who replaced him. So, I see a physician relatively rarely.
To add more confusion to my journey through this maze, last year I had hip surgery which in hindsight seems to be less than I had some degree of arthritis but was more than the buttock muscles of that hip had torn away from the bone. Radiating pain obviously ensued. Fibromyalgia? Heart attack about to happen? My muscles are weak as with most of us with fibromyalgia.
Some of us can tolerate small or moderate amounts of exercise while many cannot. On the one hand, I should exercise every day but if it is too vigorous it causes an intense flare–up. The hip surgery, like all surgeries for those of us with fibromyalgia, was not tolerated very well, even worse for those of us with heart disease. Walking even moderate distances is compromised. Along with aging, heart disease, and fibromyalgia, I am struggling with low energy. I say this with tongue in cheek, however, as I have a relatively busy and happy life despite constant pain and fatigue.
But, I once was a runner, then I became a walker of somewhat long distances, now I can only walk for 10 minutes and am exhausted and in pain. This fibromyalgia pain is a devil. It moves around and I know not where it will strike at any time. Lately, it has been on the top of both feet. No expert has been able to tell me why. In fact, x-rays of both feet have not revealed anything amiss. I worry because with heart disease exercise is primary, and even though I can tolerate 20 minutes on my exercise bike at least five times a week, it isn’t walking that I love, and miss most. Fibromyalgia is the most challenging in my life. Heart disease is the most worrisome.
Ah, but wait. The times are a-changin‘, as Carolyn has now presented us with excellent research, support, and recognition that heart disease in women must be more seriously addressed by health professionals and, that it generally differs from men with heart disease. And now, interestingly, with Lady Gaga, a well-known entertainer, coming out acknowledging she has fibromyalgia, the public is more aware of this syndrome than ever before.
I have been approached by two self-publishing companies since then asking if I wanted a rewrite of my old book on fibromyalgia. I have not been enticed to do so yet, as living with two chronic conditions sometimes feels like the burden is too much. It is indeed hard work. As Carolyn has written on her most recent blog, writing is an exhausting undertaking and that adds to the daily struggles.
It is not only women who have fibromyalgia but often men in the military. While those suffering from PTSD are predominantly male military veterans, they have not had the label of a ‘women’s‘ dis-ease. I have written that fibromyalgia is either an identical or a fraternal twin of PTSD and that these two syndromes and their labels are significant in terms of whether or not they are credible conditions.
I have also written about the many research findings of the ways in which to ‘change the brain’ for those of us with highly sensitive personalities who live with fibromyalgia. Fortunately, there is more than can be done for women with heart disease that is more direct and evidence-based, if only women were listened to with the same amount of attention as men.
For now, this about sums up my treatise about fibromyalgia and the denigration of this chronic pain syndrome said to be a women’s ‘neurosis’. On to a heralding of this magnificent book of Carolyn’s and the questions (and answers) that are posed. Why is it that breast cancer has gained such public sympathy and financial support, while women and heart disease, the leading cause of death in women, have remained a quiet torment for those of us living with or dying from the lack of information and treatment because we are women?
Answers to these and other questions are addressed in her blogs and the book. Carolyn and I are both white, privileged women who can speak up on our own behalf about our health issues. It is the disenfranchised, suffering women whose voices we must speak for as we walk this path with our own challenges. Neither of us sees ourselves as victims but as women who have wonderful support from family and friends.
We are not poor. We live in Canada where we have universal health care. We can afford to speak out on behalf of our sisters. In the meantime, I can gaze at the beginning of the lovely foliage in our Nova Scotia autumn and although I am in the winter of my life I consider myself fortunate to have met Carolyn online and continue to be in awe of the gift she has presented to women.
“Courage is resistance to fear, mastery of fear, not absence of fear”, Mark Twain
I have watched all episodes of the documentary Afflictedon Netflix. My mind is reeling and disturbed. I am hoping that by writing this blog I can begin to piece together my thoughts which to this point are rambling and disjointed. I have heard from one reader who has said there is a group who is writing to ask Netflix to remove it. At this point, I am neither for nor against this strategy.
For those of you who have not seen the documentary, there are seven people portrayed with four alleged conditions: Multiple Chemical Sensitivities(MCS), in one case, predominately mold, Chronic Fatigue Syndrome (CFS, otherwise known as myalgic encephalomyelitis, ME), electrical sensitivity and Chronic Lyme Disease. The term fibromyalgia has not been mentioned but the symptoms and life experiences are somewhat the same for many people.
What is prompting me to write this blog and acknowledge the distress I feel watching these seven people? What have I to say that is fair-minded, will not cause more angst for the women and men in the documentary, and will ease my own mind as I am invited into lives that are clearly filled with emotional and physical pain?
There are those who will be angry at the physician (MD), Dr. Friedman, who suggests the difficulty with these unexplained syndromes is that they are psychosomaticin nature. The filming crew does not spend much time with him allowing his view to be aired more frequently, but paraphrasing him somewhat, he suggests the persons experiencing this trauma and taking on the sick role have become more entrenched in their symptoms without identifying that it is a psychological issue. I can’t quote him verbatim and to rerun this program is not something I am keen to do, especially since his voice is somewhat low and I could not catch most of his views. But, I believe I just reported the gist of what he meant.
I do find it very upsetting, but understandable, the myriad of treatments, including supplements that are taken by all of the seven persons. One woman is quoted as taking 55 supplements daily. The travel and treatment costs are extremely high. None of them are evidence-based, while most appear outlandish. There is a considerable strain on caregivers and the desperation and constant searching for specialists (the majority of whom are from the ‘alternative medicine’ realm) is distressing.
The self-imposed emotional and physical isolation is difficult to watch, although with one notable exception the people do go outside and seem to be mobile. I was astounded that these people were not encouraged to exercise, at least moderately, although one woman at the end was doing yoga which was very encouraging. Since most were able to walk and did not seem to be experiencing pain with walking I was filled with envy at their abilities.
Before the reader is convinced that I am not sympathetic to the endless searches of the sufferers for a cure to these invisible ‘diseases’, let me assure all that I have been there, wishing I could find a cure for fibromyalgia (FM) and chronic fatigue (CFS). Furthermore, I do not want to sound morally superior because I no longer advocate nor use any treatments that are not integral to scientific, evidence-based medicine.
I too have indulged in multiple alternative treatment modalities that were very expensive, and while at first would feel some relief from the pain and chronic fatigue, it was all due to the placebo effect and did not last. Ah, the power of the mind! All these therapists would tell me the same story, that is, that my liver was ‘stuck’ and I had to detoxify, that is, to do liver flushes.
In my view, this is a scientifically inaccurate claim. The language is similar to most of the alternative practitioners. They are paid handsomely for strategies that are part of what I believe to be voodoo science. Some in this documentary entice them to be hopeful that their treatments will work but at least in one instance the therapist suggests the woman will die if she does not comply.
Most of the people in the film seemed to drink much water from plastic bottles, and plastic is a well-documented allergen. Water, particularly in plastic, especially if left in the heat, like the desert, cannot help but aggravate the immune system. Pets that are notorious for causing allergies were still a part of some of their lives. Therein lie many of the contraindications of our lives, sadly, mine included, if truth to be known.
People deal with their own trauma in their own ways and it is understandable that for many it is to focus on a cause that can be cured. I too have been there and it has taken me a long time to realize that the cure rests within me. Not so much an actual cure, but an understanding of the trauma of my earlier life that has affected my central nervous system to such an extent that I want to take the responsibility away from myself.
I wish so often and so fervently that a new place, a new therapist, and a new treatment could alleviate my pain, fatigue, and myriad other symptoms. Alas, it is up to me to get up from the urge to lie in bed, give up, and let others take total care of me. I make this statement on a day when I feel like I can barely move. I know the answers: meditate, do light stretches, indulge in a new activity, and most importantly, get up and walkabout. Vegetating, moving to a new town, country, or space, adopting a self-imposed diet of fewer and fewer food types, and always searching for the magic treatment is not the answer. What lies within me and yet I too struggle.
I understand the seven persons in the documentary. My advice is to not give up or give in to the false hope of being permanently ‘fixed’ by someone else. An experienced therapist who understands extreme anxiety and panic disorders can work with us to help us understand how we got to this stage, how to deal with triggers, and how to live a better quality of life in spite of the state of our amygdala.
We need to understand the neurobiology of fear. Note what Dr. Christine Blasey Ford spoke of regarding the hippocampus, which is closely connected with the amygdala and how we process fear. She too experiences anxiety and panic, yet she mastered all this by standing firm against adversity. She is my heroine. I will get up from the sofa and face the day and all its challenges.
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”
