Fibromyalgia and ‘Science’

“Nothing in life is to be feared. It is only to be understood”, Marie Curie

I recently heard a presentation from a distinguished scientist speaking about fibromyalgia. The audience seemed to be mostly comprised of people with fibromyalgia. He referred to fibromyalgia as a ‘terrible disease’. My immediate reaction was not very positive as I don’t believe that fibromyalgia is a disease, but rather a syndrome, yet he also referred to pain as a disease, which also surprised me. Language is so important to our understanding of this condition and I prefer to use the word dis-ease. If we feed into this idea of a disease, more and more researchers will continue to search for the elusive and non existent virus or bacteria or continue the search for hormonal issues, without an emphasis on psycho-social causation. Furthermore, there was much in the presentation on what the brain looks like after prolonged pain, but it seems to me that this is a chicken and egg dilemma. I would prefer that the focus be on what caused these changes rather than to assume that people with fibromyalgia are born with genetic defects. However, the question about whether or not we are born with unusual brain wiring or we acquire it from our early socialization is one which may never be answered.

The term neuroplasticity was only briefly mentioned once. Furthermore, I would have liked to know his thoughts about whether or not a person could acquire this brain defect in wiring because of socio-psychological issues. He emphasized that fear was a big factor in fibromyalgia, a point that I agree with emphatically. Fear and chronic anxiety are the hallmarks of fibromyalgia. If this is so and the ‘fight or flight’ amygdala reaction of the brain is in constant turmoil, it seems to me that this is psycho-socially induced. But of course, once again, I am only speculating.

There were many aspects of the presentation which I did like, for example, he spoke of pain as that which cannot be measured or objectified and that it is a subjective experience. I have written about this elsewhere and concur with him on this. He spoke of fibromyalgia as a central nervous system disease, and although I know this to be true, I would have substituted the word to be a dis-ease. Much of the presentation was very physiological and in-depth description of what happens to the brain as it experiences pain, which was too technical for me to understand fully and I presume for the audience. It did not interest me greatly. What did peak my interest was the “WHY” question, or the “CAUSE” issue. There were many presented, among them: genetic, environmental (among them psychiatric, stress, injury etc), COMT polymorphisms (related to neuroticism…tendency to have negative personality/emotional states…hmmm. the opposite of my theory that FMS people have a higher degree of empathy and sensitivity, a more positive view that that of neuroticism!), but strangely, none that were sociological. In fact, the entire presentation lacked any sociological analysis. The gender issue was not presented except to say that more women than men have fibromyalgia and sadly only a small sentence was given after the question came from the audience. The reply was that women’s nervous system is different from that of men’s! This of course negates the issue of men and fibromyalgia, which I believe is greatly underreported.

So what did that particular presentation leave me with ideas about where science is going with this condition of ours? Certainly there are drugs that are being tested and fibromyalgia is being investigated scientifically with the realm of pain research, therefore the drugs would be related to alleviating pain, and the impact of specific drugs on the brain. Pain is and has been an almost life long burden for me and I would like to know there is something which could help, would not affect my liver or other vital organs, or make me gain weight. So far nothing has had any effect on my pain level and I am not hopeful that much can be done to calm my hyper-aroused nervous system that is in the form of a chemical. I need to learn how to calm my ‘fight or flight’ brain response, not subdue it with drugs. Which leads me to the issue once more about the highly sensitive person(female and male).

I am very positive about the acceptance of the fact by scientists that fibromyalgia is a heightened central nervous system sensitivity (coined ‘central sensitivities’). So, I am left once again with the experts on the issue of the hypersensitive individual, the highly sensitive person, which I believe needs to be explored sociologically (that is, exploring gender issues, whilst not once again medicalizing women’s bodies, plus an understanding about why fibromyalgia is underreported in men) and within the realm of the neuropsychologists (who have the strategies to address the over aroused nervous system) and the neuroscientists who are doing the brain research. In my view we cannot continue to view fibromyalgia as a disease and I’m willing to bet that there is a huge cadre of those of us with fibromyalgia who would be willing to be part of brain research, such that I have written about elsewhere. We want to change our brains and calm our nervous system! However, given that fibromyalgia is seen by many as a disease entity our bodies will continue to be medicalized and psycho-social conditions that precipitate fibromyalgia will be ignored. After all, there isn’t much grant money to be given to scientists for research about the social conditions that are present in societies that are plagued with inequities and do not encourage sensitivity.

I don’t want to suggest that the several experts of sensitivity have given us a great deal of in-sights regarding gender (which would include both men and women), but hopefully I have done so in my book which presents a theory on why there are more women than men with a heightened sense of empathy resulting in more sensitivity than is psychologically healthy. The highly sensitive person has a great deal of fear: fear of change, self doubt, worry and anxiety. This person is rarely at peace or contented. Always concerned that she or he is not measuring up to real or perceived expectations of others, too much empathy develops. It becomes difficult to regulate emotional arousal: watching films that are violent, grief for others’ pain, and guilt or depression become frequent challenges to everyday living. Highly sensitive persons have an exaggerated startle reflex and loud noises, large crowds and violence of any kind pose tremendous difficulties.

I would like for the readers to take the sensitivity tests that are available on-line and also to check in to the several sites for highly sensitive persons. A HSP is one whose nervous system is finely tuned. It is a mixed blessing: on the one hand sensitivity is not highly regarded in many societies, yet by their nature highly sensitive persons are generally very conscientious and responsible, attributes that are necessary in a world fraught with irresponsible acts of anger/ violence and excessive stimulation. I have yet to meet someone who has fibromyalgia who did not describe her/him self as highly sensitive. Were they born that way or is this the result of social/psychological conditions in their lives?

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