” My friend…care for your psyche…know thyself, for once we know ourselves, we may learn how to care for ourselves”, Socrates
Fibromyalgia does not allow for any kind of scientific tests to aid in making the diagnosis of the syndrome. It is not a disease, but a broad spectrum of ‘symptoms’ which appear to be somewhat universal, that is, primarily pain, chronic fatigue, sleeplessness and often depression, but always present as chronic anxiety.
The official diagnostic wording was made in 1990 by a Committee of the American College of Rheumatologists, lead author Dr. Fredrick Wolfe, who has since suggested that fibromyalgia is actually a response to stress, depression and anxiety (quoted in Grot and Horwitz).
While I subscribe to this view that fibromyalgia and its sibling chronic fatigue, along with other invisible dis-eases like multiple chemical sensitivities and post traumatic stress disorder are not actual diseases, there is a danger in classifying those of us with these conditions as hysterics who cannot manage our lives and have given in to the role of a sick, mentally ill person.
Nothing can be further than this in my attempt to understand how it came to be that those of us with FMS/CFS are highly sensitive to our environments/stimuli/other people’s needs. Yet, even in categorizing ourselves as highly sensitive persons(HSPs), we risk the danger of further medicalizing ourselves and becoming labelled as people who are in need of help through mood altering medications. We can become labelled as HSPs and then become fodder for the pharmaceutical companies hence in a category of the ‘mentally ill’. This is indeed a conundrum as we ARE highly sensitive persons with easily aroused nervous systems, but the help has to come from within ourselves, not from medications that help alter our emotions.
The book Diagnosis , Therapy and Evidence Conundrums in Modern American Medicine, by Gerald N Grot and Allan V Horwitz points out the lack of pathobiology in FMS and CFS. The pharmaceutical industry has been the victor in all of this and we have fed into it unwillingly in our effort to alleviate our suffering, and obtain some degree of relief. So many write to me citing the numerous medications you are taking. The side effects are frightening. What is to be done?
I know of no other answer than that of the neuroscientists who have worked on strategies to change our brain. We can’t change societal views of people whose nervous systems are highly in tune with their environments, but we can change our responses to stimuli. I have read recently that with the work of the scientists who are making tremendous advances in understanding the brain that this will be the first generation of people to be able to look into our own brains. IMAGINE! WE WILL SOON BE ABLE TO SCAN OUR BRAIN! Brain based therapy! We will be able to scan for both positive and negative psycho-social emotions! And haven’t we tried to do this in the past? A friend pointed out that mood rings (I had one!), then bio-feedback (I did that in the 1980s!) were both attempts to ‘read’ our emotions. While this scanning of our brains may seem to be frightening to many (especially neuro-ethicists), it could be a relief to many, since we are frequently experiencing thoughts of disaster and impending doom from the hyperactive amygdala. Maybe the time will come when we can change those impulses that lead to negative thoughts and images through mechanical means. In the meantime rather than hoping for others to work with our thoughts and emotions we can learn to become our own change agents.
The intriguing research and theoretical debates about the brain is related to the mystery of how we develop consciousness, and in the case of fibromyalgia, how does our consciousness relate to our real life experiences of pain? Philosophers, neuroscientists, psycho-neurologists, sociologists, neuro-ethicists are studying, researching and debating this mind/body relationship and the nature of consciousness. For those of us who are interested in finding out how our consciousness manages to get to our brains to communicate that we are in pain, the whole world of science/philosophy is exploding in this regard. Not soon enough, nor very understandable for the general public. But this book may provide some easier to comprehend answers (Christof Koch, author).