Dear Fibromyalgia

Tag: Fibromyalgia

An in-depth guide on Fibromyalgia, covering its symptoms, causes, treatments, and tips for managing this chronic condition effectively.

Living with fibromyalgia and heart disease

“Coping with a chronic illness is work”, Carolyn Thomas

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.

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Permission to post book cover given by Carolyn Thomas

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.

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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.

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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

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Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

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06/03/2022
AFFLICTED…Netflix documentary reviewed

“Courage is resistance to fear, mastery of fear, not absence of fear”, Mark Twain

I have watched all episodes of the documentary Afflicted on 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?

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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 psychosomatic in 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.

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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.

https://www.teepublic.com/stores/fibromyalgia-store

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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

06/02/2022
Fibromyalgia fears and Covid19

“How little can be done under the spirit of fear”, Florence Nightingale

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.

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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…

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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

06/01/2022
A pandemic and fibromyalgia

” Learn from yesterday, live for today, hope for tomorrow” Albert Einstein

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.

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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“, Florence Nightingale.

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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

05/31/2022
Fibromyalgia is a malfunctioning of the central nervous system

“Do something every day that scares you”, Eleanor Roosevelt

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.

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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: National Geographic and Time that 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.

REMEMBER: THE MOST IMPORTANT ASPECT OF MINDFULNESS IS LETTING GO.

I hope my old readers will remember me and are not suffering too much from the summer heat or ‘down under’ from the misery of winter.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

05/30/2022
Nurses and Fibromyalgia

” 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.

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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.

https://www.teepublic.com/stores/fibromyalgia-store

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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

05/29/2022
Fibromyalgia: ANXIETY- PANIC ATTACKS

” PTSD is similar to Panic Attacks in that once turned on, the anxiety is fed into a vicious cycle”, David Yeung

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.

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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.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

05/28/2022
Is Fibromyalgia a ‘Psychosomatic’ Disorder?

” Trust one who has gone through it”, Virgil

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.

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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 amygdala wherein 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 Trauma there 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’.

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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 Disorders in 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 psychosomatic or 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”

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05/27/2022
Fibromyalgia: The pain is in the brain
“Memory, the warder of the brain”, William Shakespeare

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 nervous system. 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.

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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–algesia can 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.

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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”:
- Reconceptualize the problem.
- Help the nervous system to calm itself down
- (Employ) Psychological Techniques.
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”.

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05/26/2022
On Being Parented and Parenting: Overcoming Past Experiences Through Understanding Pain of Fibromyalgia

“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?

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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.

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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.

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05/25/2022