MY ‘NEW’ BOOK ON FIBROMYALGIA!

I haven’t been writing more blogs of late as I am working on publishing a book from most of my previous blogs. Included in this book will be numerous comments from my readers which have been invigorating to re-read.. Reviewing the blogs, editing (phew! how did I allow so many  mistakes to get past me? I was often careless in my writing!) and making decisions as to which ones to include has been an interesting, complex process..

As I re-read these old blogs I am struck by how much they revealed about my state of mind at the time of writing and the physical  and emotional struggles I was experiencing at various stages of the last decade. Burdened with care-giving of my aging parents and their death, my own heart attack, a hip replacement, difficulties with mobility, aging have been the key obstacles to a better quality of life for myself. However, self reflection, has been the reward for all these challenges. I understand fibromyalgia now, more completely than ever. The greatest gift has been the support I received from my readers. I’m not going to include my responses to each person who contributed comments, but the stories they have to tell and the support and advice they have given has resulted in a very enriching ‘new’ book.

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Fibromyalgia is an anxiety disorder

” 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, on high alert, causing adrenal fatigue and a hyper-aroused central nervous system.

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Fibromyalgia and its Siblings: Symptoms, Symptoms, Symptoms!

” 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 Face Book. 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 to 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.

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Fibromyalgia and the highly empathetic/ highly sensitive person

” Highly sensitive people are too often perceived as weaklings or damaged goods”, Anthon St. Marten

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, general society that is dysfunctional and often lacking in empathy.

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Developing fibromyalgia as a child

“Over-controlled by anxious, fearful parents, these children often become anxious and fearful themselves”, Susan Forward

Recently a commentator on one of the blogs wanted more of my personal information. She said that I was prone to write about others rather than myself. This, of course is true, although I have leaked  a few lived experiences of my own over the course of writing these fibromyalgia blogs for many years. First, I want to point out that fibromyalgia and chronic fatigue are caused by trauma that needs to be addressed early in life and only talk therapy will begin to help our suffering. This is why I am sharing my own childhood experiences that have set me up for anxiety, panic attacks and night terrors.

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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.

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Fibromyalgia and the tendency toward anxiety

“When anxious people anticipate something bad about to happen- such as being confronted with creepy pictures of snakes or spiders- their right frontal insulas go into overdrive”, Blakeslee and Blakeslee

Many of us with fibromyalgia can remember childhood as the beginning of a life time of fear, and anxiety. Since there might have been a significant childhood episode that triggered this dis-ease called fibromyalgia, it stayed with us while other troublesome events in our lives piled these generalized feelings one on top of the other. It is as if we accumulate and store anxieties in our psyche (frontal insula of the brain) until we can’t differentiate between everyday events that aren’t fearful and those that are. We feel things too deeply. Our empathy capacity is filled to overload. We cannot respond healthily to any form of drama or excitement. While there are some of the beginning signs of this in childhood, such as a tendency to have symptoms such as fainting, hyperventilating, or to have panic attacks, it appears as though we are usually able to live a normal life until a major crisis brings us full on to fibromyalgia, generally in middle age. Rather than this being a beginning it is usually the end of the lifelong tendency headed for the finale. A central nervous system that can no longer keep the brain from responding to this build up of anxieties in highly sensitive persons is the way I describe fibromyalgia.

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Fibromyalgia: Healing yourself

” What I want for my fans and for the world, for anyone who feels pain, is to lean into that pain and embrace it as much as they can and begin the healing process”, Lady Gaga

There has rarely been such public awareness of fibromyalgia as there is now that Lady Gaga has become public about her own suffering. While there are  thousands of those of us who suffer from the debilitating pain and fatigue of this syndrome, many still believe it is malingering.

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Letting go: How to live with Fibromyalgia

” To let go is to release the images and emotions, the grudges and fears, the clingings and disappointments of the past that bind our spirit”, Jack Kornfield

In the newspaper today there is an editorial written by Jane Brody titled “More specialists explore treating pain without drugs” (The Globe and Mail, L5, September 15, 2017). She cites the conditions that drug free options for pain can help with, such as fibromyalgia, news of which was published last year  by Richard L. Nahin in the Mayo Clinic Proceedings.

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“Pulling yourself up by your bootstraps”: struggling with fibromyalgia

” Early in life, I was visited by the bluebird of anxiety”, Woody Allen

Anxiety is the root cause of fibromyalgia, particularly at an early age, or even in the womb. So, how is one to overcome the early stages of this deep seated emotional characteristic which those of us with fibromyalgia struggle with on a day to day basis? Even more significant: how do we explain to others that the challenges of life-long anxiety cannot be overcome with those who lack empathy or compassion who suggest we just get on with life and stop complaining? It would seem as though I begin each new blog with a series of questions that aren’t easily answered.

It is fear that triggers the amygdala to release neurotransmitters. In turn the hypothalamus dumps adrenaline which causes the elevated heart rate, flushing, shallow breathing and other physiological symptoms. Fear and anxiety are two sides of the same coin. I can trace my early anxieties/ fear to anxious parenting, Catholic nuns who terrified me with thoughts of hell, a crisis of moving from a large city to a small town as an adolescent, a 17 year old who like others of the day, was used as a source of free labour in a diploma based nursing school, nursing in general, an early bad marriage, three C sections, a divorce, completing a PhD as a single parent, being stalked, remarriage with a blended family of five teenagers, caring for elderly parents, and finally a heart attack, followed by a hip replacement. Now, of course, aging has reared its challenging head. Each new crisis, no matter the seriousness, triggers the amygdala. One might look at this list and believe it is not as horrific as the life of those who suffer greater atrocities. Nonetheless, there are two kinds of people- those who thrive in acute stress situations and those who don’t. I am of the latter kind of persons, born as a highly sensitive person.

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Is the cause of fibromyalgia both a nature/nurture conundrum?

” There are many other (besides testosterone) behaviour-eliciting hormones fundamental for human well- being, including estrogen and progesterone in females”, Carl Sagan

The question arises about why fibromyalgia is more prevalent in  highly sensitive women and men. The debate about nature/nurture has not yielded specific answers and for awhile I have thought of it as a moot point. As a nurse/sociologist I have leaned toward the impact of the social environment in early childhood. But, as some science in human sexuality suggests there is a relationship between levels of testosterone in utero and the extent to which specific traits are manifested after birth. I am now even more confused. However, I continue to believe that both what happens to the development of the fetus and afterwards in the environment are both relevant, although to what degree each plays a more significant role may never be known.

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Fibromyalgia and Mindfulness-Based Stress Reduction

“You can’t stop the waves, but you can learn to surf”, Jon Kabat-Zinn

Several years ago I was privileged to take the Mindfulness-Based Stress Reduction course, not once, but twice from a wonderful therapist. To practice what I learned requires discipline and daily/moment to moment awareness. Unfortunately, after several crises, real and/or imagined, I recently let what I had learned fall by the way-side, but sensibly have begun to incorporate the strategies into my life once again . It is like pulling on an old comfortable sweater when I stop myself from allowing my rambling thoughts to have power over my daily living.

Today I read the article by Alan Green in Mindful magazine. It is in the August, 2017 edition.

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Hypnosis for Fibromyalgia

“With hypnosis, we can help people modulate perceptions in ways that are therapeutically helpful”, David Spiegel

For those of us with chronic pain and/or a myriad of other distressing physical and psychological conditions the practice of ‘changing our brains’  through relaxation and exercise regimes can be overwhelming. Mindfulness meditation is one way that we can work with our minds to improve our daily lives, but it takes time and discipline. What if there is a quicker way for therapists to teach us how to bring about relief from those challenging symptoms of fibromyalgia such as pain,and chronic fatigue? The medical community is finding that hypnosis can be effective in that regard, although to this point there is little, if any evidence based research on the effects of hypnosis for those of us with fibromyalgia. Nonetheless, it sounds promising.

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The many faces of fibromyalgia

“What’s in a name?”, Shakespeare

The nomenclature of Fibromyalgia can be known as : “Central Sensitization”, “Post Traumatic Stress Disorder” , “Cycles of Over-Exertion-Relapse”, “Chronic Fatigue Disorder”, and now a new term: “Systemic Exertion Intolerance Disorder”- all with the same characteristics.  What’s to be done so that we can explain ourselves to others while so many labels of these invisible syndromes abound? In fact, do all these terms mean the same thing? Are they bio-psycho-social in nature yet present with symptoms that are almost identical? The more I read, live with, and experience these conditions the more certain I am that they are linked under the umbrella of “medically unexplained symptoms”, referred to as MUS. It appears to me that there is less understanding of the linkages than ever before as new labels appear. How can we separate the ‘bio’ from the ‘psycho’ ‘social’? Are they all neurological conditions?

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Fibromyalgia and Skin Problems: Clothing that Causes Itching

“I base most of my fashion sense on what doesn’t itch”, Gilda Radner

There isn’t anything more comforting to me than cloth that is soft and soothing. Mostly, it is cotton that gives me a feeling of being in a cocoon. Since the most popular blog on this busy website is about itching it has brought to mind the ways in which we can reduce the itching and scratching (the “Itchy & Scratchy Show” from the Simpsons is brought to mind) of fabric that does not bring comfort.

As an effort to “change my brain” regarding pain, I followed the advice of experts many years ago and took on a project which was creative and new to me. In addition it is somewhat repetitive, also part of the triad of characteristics that make up this endeavor. Quilting was my choice of a new project/hobby. Never a sewer it was indeed a steep learning curve but it brought me into the realm of fabrics.

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Fibromyalgia: the mosaic of treatments

“To conquer fear is the beginning of wisdom”, Bertrand Russell

I believe that those of us with central sensitization, that is, fibromyalgia and chronic fatigue , or to call it by another name -“post traumatic stress disorder”, all suffer from chronic anxiety/ fear. These terms are , in my view,  interchangeable. They can keep us imprisoned without recourse and in a state of hopelessness. In fact, the US Department of Health and Human Services has developed a new name which can even be part of our repertoire, that is, “Systemic Exertion Intolerance Disorder”. In short, more diagnostic criteria are available for health professionals who are interested in tagging us. It is true that we have little energy along with our other challenges, but are we just a collection of  symptoms?

For almost a decade now I have been writing about how those of us with these conditions ( read: condition) have options regarding a better quality of life. Yet, in spite of my preaching I find myself, like others, often recounting yet another symptom of central sensitization almost ignoring the gestalt. Note for example the hundreds of comments or ‘hits’ I have on the two most popular blogs of 1) itching and 2) tingling and numbness of arms. One would never have imagined that these two symptoms would be so problematic! Yet, those of us who suffer from specific symptoms focus on them often to the exclusion of what can be done to improve our daily lives.

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