“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. 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. 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.
“Self development is a higher duty than self sacrifice”, Elizabeth Stanton
As I read more and more about brain mapping and how to change the pain mappings in my brain I am reminded about how intensely I wrote in my book regarding the highly sensitive person (HSP, according to Elaine Aron). This is the ’empath’, the person who senses what other people are feeling and takes on the emotions of others as though they were her/his own( I don’t mean this in the usual sense of the ‘psychic’ person, or in any mystical way). I still stand by that description of the person with fibromyalgia. We are like a toxic sponge! Now, I believe that this type of person (mainly, but, of course not solely, women) has the personality characteristics of the self sacrificing, doing good for others (what Dr. James Rochelle calls ‘goodism’) and ‘giving yourself away’ (a term Nick Matheson coined). When I think of Florence Nightingale on this May day, her birthday month, suffering from fibromyalgia, I think of her as a primary example of self sacrificing.
Writing those words, 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. 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.