The nomenclature of Fibromyalgia can be known as : “Central Sensitization”, “Post Traumatic Stress Disorder” , “Cycles of Over-Exertion-Relapse”, “Chronic Fatigue Disorder”, and now a new term: “Systemic Exertion Intolerance Disorder”- all with the same characteristics. What’s to be done so that we can explain ourselves to others while so many labels of these invisible syndromes abound? In fact, do all these terms mean the same thing? Are they bio-psycho-social in nature yet present with symptoms that are almost identical? The more I read, live with, and experience these conditions the more certain I am that they are linked under the umbrella of “medically unexplained symptoms”, referred to as MUS. It appears to me that there is less understanding of the linkages than ever before as new labels appear. How can we separate the ‘bio’ from the ‘psycho’ ‘social’? Are they all neurological conditions?
“After a traumatic experience, the human system of self-preservation seems to go into permanent alert, as if the danger might return at anymoment” , Judith Lewis Herman
There has been a great deal of public awareness of late regarding the concept of Post Traumatic Stress Disorder. It seems as though the syndrome has become somewhat commonplace and many are quick to self diagnose. But, even more are recognizing that the condition is one caused by great stress and chronic anxiety and there are commonalities among us in our responses to traumatic experiences. What was once associated with abuse, now is believed to be the result of many occurrences that bring about dramatic memories, which in turn trigger danger to an overly stimulated nervous system. With the relatively recent wars in the Middle East whereby PTSD among veterans became all too common, public awareness has been heightened. In my book I discussed fibromyalgia in relation to what was then becoming known as Gulf War Syndrome, now it is more specifically known as PTSD that is capturing the attention of the experts. In the first world war it was known as shell shock. In the second world war it became known as battle fatigue, finally it is now more appropriately labelled as PTSD. Many of these veterans with PTSD have fibromyalgia, in fact I speculated then (and do so now) that they are one and the same thing. I will acknowledge there is the possibility that they are somewhat separate but akin to identical twins. The symptoms are identical.
“Everybody gets so much information all day long that they lose their common sense”, Gertrude Stein
To write that I am frustrated, angry, and discouraged over the recent hoopla this week in the news from the U.S. Institute of Medicine (IOM) report on Chronic Fatigue Syndrome is to be putting it mildly. As is usual with someone who has CFS and fibromyalgia (FM) I awoke several times last night. During those wakeful periods I wanted to write this blog with great haste in protest for whomever would read this rant from me. I have to admonish my readers that the report is not to be viewed with great enthusiasm. The IOM state that CFS should now to be regarded as a disease. I write this knowing that the majority of my readers want these conditions to be regarded as such and for which a medication can be taken and our conditions would be cured. But as I have repeatedly written over many years, this cluster of symptoms which make up a syndrome cannot be ‘cured’ with the usual allopathic or alternative medicines. It is far more complex than that. Hunts for viral, bacterial and hormonal causes have been on-going for many decades. I had hoped that this was all behind us. Is this trend going to be re-invented?
“Life has got to be lived-that’s all there is to it. At seventy, I would say that advantage is that you take life more calmly. You know that “this,too, shall pass!”, Eleanor Roosevelt
In my book I write about the confusion in the research regarding whether or not fibromyalgia improves (or not) with aging. I now know that there is no easy answer to that question and that it may improve for some but for many the opposite is true. Aging brings about its own aches, pains and fatigue that often cannot be differentiated from those of fibromyalgia. In fact, both may be exacerbated as one ages.
” 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.
“If you can anchor yourself to a ship of tranquility, you won’t be tossed about by the waves of stimulation”, Ted Zeff
I recently asked my spouse what lessons he learned from his father. His reply was how to ‘pace’ himself; to be cautious and not overly frenetic. His father lived to be 90, was a factory worker and a musician and helped raise five children. He was a calm man, did not complain about aches or pains, was easy going and like his son, my partner of many years, a relaxed man. He was like this in spite of the stimulation of five children and two jobs. It was a pleasure to be around him. He moved about slowly, pacing himself. Neither he, nor his son, have , nor had fibromyalgia. That goes without saying.