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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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: ‘Women’ and ‘Men’ Differences?

“The happiest women, like the happiest nations, have no history”, George Eliot

I have based my unproven theory about why more women than men are diagnosed with fibromyalgia upon a feminist analysis of the political and cultural roles of women in societies in general- both historically and at present. However, now how gender is currently socially constructed and is much more fluid, it has indeed become a complex issue and not as straightforward as I previously thought. I have begun to look less at statistics in regard to the ratio of women to men because I believe that fibromyalgia is a catch-all term that includes all genders who suffer from chronic pain and fatigue and it is under-reported by many who define themselves as traditionally female or male.

The concept of fibromyalgia developed as more and more women began to speak out about  similar characteristics and symptoms which encouraged physicians to deem that it was  primarily a  condition that afflicted more women than men. There isn’t any way to be accurate about how much of the population of any country has fibromyalgia. In many places there isn’t even a term for the condition; more to the point many traditional men have been hesitant to report the symptoms to a health care professional for fear of being seen as less masculine. There is little doubt that for bi-sexual and trans-gendered people the issues are even more complex. But, things are changing as more military personnel are reporting post traumatic stress syndrome, formerly known as ‘shell shock’ and then ‘Gulf War Syndrome’.

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Fibromyalgia- anxiety embodied

” The truly gripping thing about anxiety had always been how physical it was”, Daniel Smith

I have little doubt, but no absolute proof, that anxiety is the root cause of fibromyalgia. I know many anxious persons who do not have fibromyalgia, but I do not know any person with fibromyalgia who does not suffer the plague of anxiety. It could be the chicken/egg dilemma but I suspect fibromyalgia is the result of long term anxiety which shows itself in the form of body pain, among other physical manifestations. The book featured here by Daniel Smith, while somewhat a bit too sexually graphic at first reading, is one in which anxiety in the extreme is presented honestly and sometimes overwhelmingly. It is a sad, yet funny documentary about the many ways in which this condition can affect our bodies very dramatically.

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Fibromyalgia and Chronic Fatigue:Medically Unexplained Symptoms (MUS)

“Open your heart to your suffering”, Toni Bernhard

 

There can be little doubt that those of us with fibromyalgia/chronic fatigue have challenges that have forced us to live life differently than those who have ‘health privilege’ (a term I am unashamed of borrowing from Carolyn Thomas- www.myheartsisters.org). Often thought of as malingering, hypochondriac, weak, attention seeking, depressed people we often live in quiet desperation. By now we recognize that we have developed these conditions because of an over-stimulated nervous system which cannot sustain itself in a healthy manner any longer. It is as though we have over stretched the central nervous system just as a rubber band might become less elastic after constant over stretching. Whatever normal is, our hyperaroused nervous system is suffering from years of responding to stimuli that are too overwhelming for our sensitive natures and has become  functionally abnormal . In spite of the fact that fibromyalgia is not a disease, but a dis-ease, perhaps precipitated by an illness or accident, or long-standing stresses from general life experiences, we have become chronically ill because of the pain, fatigue and myriad of other symptoms with which we are faced.

Reading the comments that are posted in the 99 blogs (this is number 100!) I have written over the years I am always struck by the physical and psychic pain of the readers. Some are functioning fairly well while many others are bedridden and socially isolated. None of us live with the expectation we will be cured of the pain, fatigue, intense itching,  depression, anxiety, nausea, flu-like symptoms and other debilitating challenges of these syndromes. Therefore we are left with this question posed by Toni Bernhard :” Can we live a good and fulfilling life when our activities are so severely curtailed?”. The answer, of course, is “YES!”, if we live in the moment.

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