“To conquer fear is the beginning of wisdom”, Bertrand Russell
I believe that those of us with central sensitization, that is, fibromyalgia and chronic fatigue , or to call it by another name -“post traumatic stress disorder”, all suffer from chronic anxiety/ fear. These terms are , in my view, interchangeable. They can keep us imprisoned without recourse and in a state of hopelessness. In fact, the US Department of Health and Human Services has developed a new name which can even be part of our repertoire, that is, “Systemic Exertion Intolerance Disorder”. In short, more diagnostic criteria are available for health professionals who are interested in tagging us. It is true that we have little energy along with our other challenges, but are we just a collection of symptoms?
For almost a decade now I have been writing about how those of us with these conditions ( read: condition) have options regarding a better quality of life. Yet, in spite of my preaching I find myself, like others, often recounting yet another symptom of central sensitization almost ignoring the gestalt. Note for example the hundreds of comments or ‘hits’ I have on the two most popular blogs of 1) itching and 2) tingling and numbness of arms. One would never have imagined that these two symptoms would be so problematic! Yet, those of us who suffer from specific symptoms focus on them often to the exclusion of what can be done to improve our daily lives.
“The traumatic moment becomes encoded in an abnormal form of memory, which breaks spontaneously into consciousness, both as flashbacks during waking states and as traumatic nightmares during sleep”, Judith Lewis Herman
Trapped in our psyche, past traumas wind themselves into the body and present as a multitude of physical symptoms. Pain, extreme crushing fatigue, intestinal difficulties, severe itching, rashes, tingling of limbs- the list seems endless. We seem not able to control our anxiety about when or which kind of bodily experiences will be next. We are constantly on guard, judging past and possible future symptoms… was this pain the same a few minutes ago? Will it become worse? If I do this or that will it harm me? What is this new symptom about?
“What I am looking for is not out there; it is in me”, Helen Keller
The idea that fibromyalgia can be ‘cured’ through medications is erroneous. Drugs such as Neurontin or Lyrica can sometimes be effective to control the symptoms in some people with fibromyalgia some of the time. Is this really treatment or merely masking the symptoms?
I will make this blog very short and suggest that the best way to treat fibromyalgia is 1) to remap the brain; 2)control the excess arousal of the nervous system; 3) unlearn what we have believed to be either a biological/viral/bacterial cause of fibromyaliga; 4) stop the talk therapy that only brings up the same negative stories we have told ourselves over and over and continues to reactivate our nervous sytem; 5) stop looking for a ‘cure’ with medicines.
“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.