“There’s someone in my head, but it’s not me”, Pink Floyd
Just as I thought that I had nothing new to write about I have discovered that the weird ‘brain’ sensations I have, which only last for moments, are common among those of us with this frustrating condition of fibromyalgia! I have had these peculiar short-lived experiences that are followed by dizziness for several years now. The episodes are almost like a small temporary memory loss, almost feeling faint-like. I don’t have the language to describe them. It is as though my skull almost empties for a few seconds. It is somewhat creepy to imagine a skull without a brain.
Many have written that coming off a medication brings about these zaps/pings/shocks/memory loss/dizziness occurrences. But, I have not come off any medications. Still, I have read that being on Gabapentin can cause them. I do take 300 to 400 mg per day. Is this what is causing them? The attacks aren’t too frequent but certainly do cause slight dizziness and loss of balance.
I have often had electrical shocks throughout my body- this isn’t the same thing. I have written about ‘brain fog’ several times – again, this isn’t exactly the same thing. I have had vertigo- it is different from that as well. I wish I had the language to describe the episodes. It’s as though my brain loses a second or two into the air, is not in my own body!
Others have written that changes in temperature can affect brain zaps. This may be so as changes in the environment affect all of us with fibromyalgia. But, this isn’t the complete answer. The causes seem to be unknown although definitely connected to the nervous system. Like fibromyalgia itself, the problem is that we are seeing so many of us with common symptoms and questions about our nervous systems gone awry, but with very few answers available.
There is little doubt in my mind that these zaps are part of my anxiety episodes. It is the cause I keep coming back to. My hyper-aroused central nervous system, based on past trauma, which is in a constant state of hyper-vigilance, is in its usual mode of overload. At least this is the only tentative answer I have for now. It fits with the rest of my modus operandi.
Well, along with other weird sensations those of us with fibromyalgia live with, let us at least know for now that this weekend there are many who will dress up to look and behave even more creepy than our nervous systems! Be safe.
” People who are prone to anxiety are nearly always people-pleasers who fear conflict and negative feelings like anger”, David D. Burns
Everyone worries, it falls under the umbrella of anxiety. It is not about living in the moment but rather it is about looking back in the past where it all began and into a future that is pure fantasy. Those of us with excessive anxiety are prone to catastrophic thinking, our thoughts go to the worst-case scenario. The glass is usually half empty. We are often gloomy but hide those thoughts from everyone; the sky is falling. Our brains are encouraged to ‘worry well’ by closing in on the worry loop. It is obvious that we face multiple challenges. The amygdala in our brain is constantly fired up, and on high alert, causing adrenal fatigue and a hyper-aroused central nervous system.
And so, our ‘symptoms’ continue hyper-vigilance, un-refreshed sleep, brain fog, joint and muscle pain, digestive disorders, itching, nightmares, extreme reaction to loud noises, lights, smells, an intolerance to all but mild exercise, prone to carpal tunnel syndrome, and supersensitivity to foods, chemicals and any kind of excitement. The list seems endless. We have been called ‘jumpy’, ‘neurotic’, ‘malingers’, and ‘high strung’, among other names that stigmatize.
So I want to rename our personality traits as positive. We are caring, highly emphatic, compassionate, intuitive, and sensitive. In a world that is exceptionally chaotic, it is little wonder that we are anxious for our fellow human beings, in particular those who are marginalized, that is, the poor, those who suffer because of racism and sexism, and people subject to homophobia. We listen to lies on television, we are pitted one against the other, and we sense the hopelessness of others while at the same time we have our own struggles and do in fact, lack self-compassion. We feel the anxiety of others which adds to our own extreme anxiety. This is why we have fibromyalgia…we relate to the pain of others while our own is neglected.
In other blogs, I have written about how to take care of ourselves to have a better quality of life, but here my rant is about the madness we see around us every day in a world where people in power place the world at great risk. There are many who are fighting the good fight, but right now in history it is easy to be overwhelmed, which is what the four relatives of fibromyalgia, PTSD, Multiple Chemical Sensitivities, and Chronic Fatigue are about- feeling overwhelmed, anxious, and struggling with despair, our own and the fate of the world.
I have rarely written about the politics of fibromyalgia, instead kept this website to the personal. But, the old adage of the feminist movement “the personal is political” seems to me to belong overdo for discussion about these four siblings noted above.
” Trying to eradicate symptoms on the physical level can be extremely important, but there’s more to healing than that; dealing with psychological, emotional and spiritual issues involved in treating sickness is equally important”,Marianne Williamson
I have become discouraged of late with a fibromyalgia group on FaceBook. One person asks about a particular symptom and others write in that they too have the symptom. While it helps to know that others are suffering to the same extent, it leaves the person feeling helpless and a victim of the dis-ease. This is especially so when we become focused on symptoms.
To be fair, sometimes there are often good suggestions as to how to deal with a particular issue, and for the most part, it is a forum for support, that can be comforting. But fibromyalgia is more than just a list of symptoms. Not only do we have many of the same challenges among ourselves, but there are other conditions that are alike and can define us as well. We do not have a disease, but a dis-ease and fibromyalgia is one part of a family of triplets and one other sibling.
Fibromyalgia syndrome (FMS) does not stand alone and it is important first off to discuss how these symptoms are shared with others that are labeled differently but are the same syndrome. These are the triplets:
1) Chronic Fatigue Sydrome (CFS- sometimes known as Myalgic Encephalomyelitis, or ME), 2) Post TraumaticStress Disorder (PTSD) and 3) Fibromyalgia Syndrome (FMS). Yet, there are those who try to separate these three. Furthermore, we have another sibling (which may or not be part of a quadruple, rather than ‘just’ a sibling to the other three) called 4) Multiple Chemical Sensitivities(MCS).
Many SYMPTOMS of the four are the same. The personalities of them all are: highly sensitive, natural empaths, and have a heightened ability to sense the emotions and feelings of other people, which is overly emphatic. Most importantly, it is deep-seated anxiety that defines those of us with these syndromes. While those who have MCS have a history of asthma, rashes, dry or sore eyes, rhinitis, and blocked nose sometimes more so than the triplets, sleep disturbances, joint and muscle pain, bloating, and severe itching link MCS sufferers to the triad. I wish there was but one word to call these four syndromes.
The symptoms which preoccupy people with these conditions might vary from one person to another but eventually, we usually experience them all to some degree.
Last week I read a blog on the FB page about the symptom of difficulty in swallowing. It certainly can be caused by an inflammation of the throat, it could be irritated by gastroesophageal reflux (GERD), for example. But it appears to me that when there is no known cause it is more commonly brought on by extreme anxiety; it was formerly known as “Globus Hystericus”, and it is psychogenic.
Fibromyalgia, is, after all, extreme anxiety in highly sensitive persons. Difficulty in swallowing is known to be common among those who are in the midst of great stress and panic. The many symptoms of FMS/CFS/PTSD/MCS often include shortness of breath and the sensation of a lump in the throat. The common usage of the term ‘lump in the throat is one that brings forth an image of someone who feels extreme sadness/ depression/ anxiety for oneself and others.
Another recent symptomposted on the FB page is related to “insurmountable fatigue”, in other words, CFS. I have seen the film UNREST, which is about chronic fatigue, (otherwise known to the filmmaker as ME) “characterized by post-exertional malaise”. UNREST is available on Netflix. The symptoms of CFS include physical and mental fatigue, debilitating pain, sleep dysfunction, cognitive dysfunction, sensory sensitivity, and worsening of these symptoms after even minimal exercise, along with a host of other physical challenges (sound familiar to those of you diagnosed as someone with fibromyalgia?).
I found the film to be very upsetting as it appeared to be focused on having a physiological cause for that which I consider to be psychogenic. The woman portrayed in the film tried one alternative/complementary approach after another and it seemed as though when one new one helped as a placebo effect she would consider herself better. Then after being bedridden for a long period of time she would get up, walk and hike rather vigorously, finally collapsing. It was in fact, a film intended to politicize CFS, rather than one which points out that for all these conditions a focus on symptoms is counterproductive and reinforces the idea that if one can manage this particular one, life would resume as normal.
These four conditions require certain steps which the individual is responsible for, as there isn’t a magical elixir that can be taken to cure. These are the suggestions for how to improve your quality of life:
Talk therapyand reflection about childhood and the ways in which a person was set up as a child to become vulnerable to generalized anxiety is crucial initially. This anxiety is manifested in many ways- fears, addictions- to alcohol, food, drugs, compulsive shopping/buying, and so on- one size does not fit all. When this kind of reflection is in place then the person can readily understand triggers that bring on flare-ups. It is unhealthy to be constantly looking back, but in order to move forward into the moment, it is necessary to uncover how it all began.
Light exercise, even a 5-minute walk several times a day.
Practice Mindfulness throughout the day, while eating, drinking, shopping or buying to the extreme, not planning for the future, or looking back at the past and instead live in the moment. This is perhaps the most challenging and difficult practice to undertake consistently.
Movementis imperative. Taking to the sofa or bed is not a healthy habit. Light yoga, Chi-Gong, Tai Chi or another form of movement is a way to change that plastic brain to go down another pathway other than one focused on symptoms.
Avoid stimulants such as alcohol, caffeine, and sugar. Maintain a healthy diet.
Undertake a new-to-you hobby that is creative, repetitive, and will challenge your brain in new directions. Try to avoid repeating the same hobby year after year but challenge yourself to new ones.
Avoid stressful situations with people who trigger your reactions of itching, pain, fatigue and other unpleasant reactions. If it is a family member reduce your time spent to a minimum. If you are in an abusive situation, end it.
Try to lead a more quiet lifestyle away from large crowds which overstimulate your already over-stimulated central nervous system.
Meditation practice is paramount even if it is only for a few minutes each day and increased slowly to at least 20 minutes. BREATHE!
Avoid over-medicating. These conditions are not diseases, they are syndromes that require discipline on your part, and taking too many mood-altering drugs can cause more brain fog, less desire for exercise, and dependencies.
Remember: We are highly sensitive persons, with generalized anxiety and a hyper-aroused central nervous system. No one else can help us as we are the master/mistresses of our own fate. Focusing too much on symptoms is counterproductive and never-ending!
Find a loving friend/ spouse/ therapist who will give you a massage most of all stop the intense focus on symptoms but rather practice the numerous ways in which to achieve a better quality of life. For now, I must sign off and enjoy this beautiful, sunny day in cold Nova Scotia. Stay warm, be cool!
Anton St. Marten writes that to feel intensely is “the trademark of the truly alive and compassionate”. Rather than believing that the person who is highly empathetic and sensitive is weak, it is, in fact, a general society that is dysfunctional and often lacking in empathy.
In the fibromyalgianewstoday.com issue I received recently there is an article published on January 22, 2018, which reads: “Personality Disorders Prevalent Among Fibromyalgia Patients, Study Suggests” by Alice Melão. The articles she cites appear to believe that those of us with fibromyalgia (FM) are: “exhausting to manage”, “perfectionists” and “demanding”.
Furthermore,” Personality disorders, such as obsessive-compulsive, avoidance and histrionic behaviors, are prevalent comorbidities, among patients with diagnosed fibromyalgia”. I was aghast when I read this article and in particular when I read the angry comments from other readers who are hurt by this language. As one commentator wrote: “These articles are not only useless, they are damaging”. Alice Malão cited the ten studies :
Martinez et al., 1995, “Psychological aspects of Brazilian women with fibromyalgia”, Journal of Psychosomatic Research.
Thieme et al., 2004, “Comorbid depression and anxiety in fibromyalgia syndrome: relationship to somatic and psychological variables, “Psychosomatic Medicine.
Rose et al., 2009 “Study on personality and psychiatric disorder in fibromyalgia”, Presse Medicale.
Cerón Muñoz et al,. 2010 “Fibromyalgia and personality disorders”, Semergen-Medicina de Familia.
Uguz et al., 2010 “Axis 1 and Axis 11 psychiatric disorders in patients with fibromyalgia “, General Hospital Psychiatry.
Pando Fernández, 2011, “Fibromyalgia and psychotherapy” Revista Digital de Medicina Psicosomática Psicoterapia.
Garcia-Fontanals et al., 2014 “Cloninger’s psychobiological model of personality and psychological distress in fibromyalgia, International Journal of Rheumatic Diseases
Fu et al., 2015, “Psychiatric and personality disorder survey of patients with fibromyalgia,” Annals of Depression and Anxiety
Gumà-Uriel et al., 2016, “Impact of IPDE_SQ personality disorders on the healthcare and societal costs of fibromyalgia patients: a cross-sectional study”, BMC Family Practice.
Kayhan et al., 2016, “Sexual dysfunction, mood, anxiety, and personality disorders in female patients with fibromyalgia,” Neuropsychiatric Disease Treatment.
It appears from these articles that people/women with fibromyalgia are hysterics, difficult to manage, and obsessive-compulsive. The thousands of readers of my blogs definitely have something in common with one another, but it is not a personalitydisorder. Our commonality is hyper-empathetic sensitivity in a world gone awry. While I don’t know about but three celebrities who have or had fibromyalgia I cannot attest to these three as having personality disorders.
I don’t know Lady GaGa who has stated she has FM, but I have read extensively about Florence Nightingale and her retirement to seclusion at age 38 after being in the Crimea. Was it PTSD or fibromyalgia she suffered from and aren’t they the same? Was she in fact hysterical when she served during the Crimean War? Was she difficult to ‘manage”? Was she in fact an ‘obsessive-compulsive’ person? My questions are the result of years of living with this condition and self-reflection. Yes, Nightingale wanted to change the world of health care and even the military, both of which she considered mismanaged. Is that obsessive-compulsive? Did she fit this personality disorder pattern? Do I?
As a child, an adult, a responsible mother, wife, and professor I was never considered “difficult to manage”, in fact, the exact opposite. I was generally compliant, easy to get along with, and certainly an obedient child. More to the point I have never been in the least bit obsessive-compulsive, and as for hysterical about everything in life I don’t fit that picture. Additionally, I have never been considered a perfectionist, in fact, (unfortunately for my spouse) the exact opposite again.
So why is it that we are considered people with similar “personality disorders”, a damning label? Is it because we have an invisible dis-ease and therefore our health challenges are considered suspect? Is it because the majority of us are women and highly sensitive? Why is it that the military who have PTSD (fibromyalgia) have a different name for the same symptoms? We all have great concern for the veterans who suffer from shell shock/ Gulf War Syndrome/ battle fatigue/ PTSD (all can be compressed into the label of fibromyalgia) and we acknowledge there are degrees, as there are with those not in the military who also has FM/PTSD.
I prefer instead to turn this around, turn it onto its head and use a different language. As stated on many occasions, fibromyalgia occurs in highly sensitive persons (HSPs as Elaine Aron has defined the concept in her original book The Highly Sensitive Person). Whether or not this is nature or nurture is debatable, but nonetheless, the child who is highly sensitive feels things very deeply and as an adult, this trait exemplifies a certain type which is not a disorder, but rather as Aron states, is a gift, like the canary in a coal mine.
We DO have a hyperactive mind, a frequently overstimulated central nervous system, with a highly-empathetic nature. We do feel the pain of others too deeply. The question though is to ask these researchers if we have a disorder or rather, an intense desire to help others to the detriment of ourselves? Consider this: why do so many nurses and social workers have fibromyalgia? Why are so many military personnel suffering from PTSD?
We see, hear and anticipate the pain of others in these overly sensitive minds of ours to the extent that anxiety becomes second nature, particularly since we had not developed a hard shell in our earlier years. We are highly intuitive, much more than the general public. Is this a disorder that is perceived as deplorable? Is it not a gift? Why does it continue to have a psychiatric label that is shameful?
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.
” 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.
