” Things are going to get a lot worse before they get worse” , Lily Tomlin
I am weary. Try as much as I can, I cannot find many fibromyalgia researchers who are willing to stop this endless search for a medical cause of fibromyalgia! So many seem keen on trying to force the Cinderella slipper on the wrong foot! WHY IS THIS? It can’t be for research grants to enhance careers, but can it be that there is a naive hope of finding a ‘cure’. But, wait, I don’t mean to imply that all the researchers are cold hearted and don’t want to find a ‘cure’! Of course they do, who wouldn’t? But how about the ’cause’ question? Back and forth we go between cause and cure.
The pharmaceutical companies, for example, could not possibly want a social cause to be found or they might not be able to access the market profitably. But as a vaccine for a disease entity, that cure might make profits rise. Doctors would love findings that suggest there is a vaccine, or a medication to cure that would help them treat their patients more effectively. Nothing would make we sufferers happier than finding a medical cause that could be treated with a drug! So, why isn’t it happening?
Even more disturbing are the ‘alternative’ or ‘complementary’ causes (too much of this or that in our systems) and we need to either flush out our systems of toxicity or we need to buy their cures ( add some concoction to our daily diets). We search endlessly for those who suggest there is a cure and spend many dollars following their advice. As Shermer has written” …I have noticed about extraordinary claims and New Age beliefs that they tend to attract people on the fringes of academia-people without formal scientific training, credentialed (if at all) by nonaccredited schools, lacking research data to support their claims, and excessively boastful about what their particular elixir can accomplish” (p.15.Why People Believe Weird Things).
Back to my ‘same old/same old’ argument. In my view fibromyalgia is caused by a hyperaroused nervous system in highly sensitive people (primarily women) who, because of the roles they are assigned in society are the caregivers, the highly empathetic, overly concerned for others, highly intuitive people who are always ‘on duty’ and cannot ever ‘let go’ of this hypervigilance. Who loses if we adopt this approach to fibromyalgia? Certainly the researchers who want to find a medical cause, because if we begin looking to the ways in which society is constructed and disadvantages women (and men and children who are overly sensitive), then the cause is too overwhelming. BUT, there arethose who could focus on helping us. The psychoneurologists! But, then the disease would have to come out of the hands of the rheumatologists (who might, by the way, be happy about this). We cannot change society very rapidly but we can begin to understand it more fully and the damage that has been done to our nervous systems over many years.
Yes, we suffer at loud noises, overly bright lights, strong wind, heavy smells, crowded noisy places and so on and so on. WE ARE HIGHLY SENSITIVE PEOPLE! We start out being sensitive to other people’s emotions, vibes in a room of people, then we become sensitive to touch, to other stimuli in the environment, to sounds, hearing ( See Sue Cartledge as one of my links and her June 8th blog), heat and cold, weather conditions to air quality, toxic substances and so on and so on.
It is the role of psychoneurologists to discern the potential or real trauma that could or has occurred in the early childhood development of the nervous system, particularly in the right hemisphere of the brain which affects arousal. The right hemisphere is responsible for empathy, intense emotions, deep attachments in relationships, to name a few of its functions. When we begin to be over-aroused in childhood (Or we are born that way? Again the nature/nuture question) and we are subjected to a trauma either physical or emotional it appears to set off the fibromyalgia. In my view, the psychoneurologists who deal with the nervous system are the people we want on our search for cause AND cure! (more of this is to be found in my book!). There are other pain experts who also have tremendous understanding of the nervous system and are highly qualified to work with us and the relationships between our over stimulated nervous systems and pain (See for example, the information available on three of my site links…One to One Wellness Centre , explain pain and Diane Jacobs PT)
Sigh! Sometimes I think maybe, just maybethere is a medical cause for fibromyalgia and I am just a lone voice crying in the wilderness. Nothing is more exasperating than someone who has blinkers on and can’t see another’s perspective. But, in my 40+ years of living with fibromyalgia I know intuitively that just isn’t so! In the meantime nothing very much has happened… wheels seem to be spinning endlessly.
I am so weary.