I am a Professor Emeritus, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada. My B.Sc.is in Nursing while my MA. and Ph.D. are in Sociology.
I am married, a mother and grandmother living on the east coast of Canada.
I have personally lived with fibromyalgia for about 40 years. I published a book with iUniverse in 2007. This book detailed living with this condition and allowed the voices of twenty women who have fibromyalgia to tell their stories.
” The biology of pain is never straightforward, even when it appears to be”, Lorimer Moseley
I thought I knew it all: fibromyalgia is a constant hyper-arousal of the central nervous system and all the symptoms that evolve from that disorder. But recently I met with an internist who held my hands palms upward and told me she would have known I had fibromyalgia just by looking at my palms which are pink! I have pink palms, which is a sign of fibromyalgia and its impact on ‘nerves’. She also commented on my pink cheeks. I was stunned. This was new to me, that this is often a sign of fibromyalgia.
“Courage is resistance to fear, mastery of fear, not absence of fear”,Mark Twain
I have watched all episodes of the documentary Afflicted on Netflix. My mind is reeling and disturbed. I am hoping that by writing this blog I can begin to piece together my thoughts which to this point are rambling and disjointed. I have heard from one reader who has said there is a group who are writing to ask Netflix to remove it. At this point I am neither for nor against this strategy.
For those of you who have not seen the documentary there are seven people portrayed with four alleged conditions: Multiple Chemical Sensitivities(MCS), in one case predominately mold, Chronic Fatigue Syndrome (CFS, otherwise known as myalic encephalomyelitis, ME), electrical sensitivity and Chronic Lyme Disease. The term fibromyalgia has not been mentioned but the symptoms and life experiences are somewhat the same for many people.
” IT’S NOT THAT I’M SO SMART, IT’S JUST THAT I STAY WITH PROBLEMS LONGER” Albert Einstein
And so, I began yet another journey with a therapy that I had not used before- ‘mirror therapy’. My physiotherapist had shown me how this is to be done with a stand up mirror. It is intended to loosen my operated upon hip that had never completely achieved the same range of motion of earlier years. Many of us with fibromyalgia have areas with great constrictions.
” PTSD is similar to Panic Attacks in that once turned on, the anxiety is fed into a vicious cycle”, David Yeung
Anxiety, depression and panic attacks are triplets. They live together and feed on one another. The sources of these three demons are usually from: childhood experience, past trauma and a family history. While panic attacks are extreme episodes of anxiety and are relatively common in the general population, the frequency of them are noteworthy in those of us with fibromyalgia. We are prone to catastrophic thinking which often initiates extreme anxiety that can be pushed into a genuine panic attack. While the duration of them usually last for a short period of time, those of us with fibromyalgia, PTSD, Chronic Fatigue and Multiple Chemical Sensitivities can experience panic more frequently, and the duration is much longer.
” The greatest heroes are those who do their duty in the daily grind of domestic affairs whilst the world whirls as a maddening dreidel” , Florence Nightingale
A dreidel is a four-sided spinning top. I loved the above quote but knew not what that word meant. It makes so much sense to me now as the world is certainly spinning out of control and it is the hyper-sensitive, traumatized person who suffers the most, especially if she or he works in a high stress environment.
” People who are prone to anxiety are nearly always people-pleasers who fear conflict and negative feelings like anger”, David D. Burns
Everyone worries, it falls under the umbrella of anxiety. It is not about living in the moment but rather it is about looking back in the past where it all began and into a future that is pure fantasy. Those of us with excessive anxiety are prone to catastrophic thinking , our thoughts go to the worst case scenario. The glass is usually half empty. We are often gloomy but hide those thoughts from everyone; the sky is falling. Our brains are encouraged to ‘worry well’ by closing in on the worry loop. It is obvious that we face multiple challenges. The amygdala in our brain is constantly fired up, on high alert, causing adrenal fatigue and a hyper-aroused central nervous system.
” Trying to eradicate symptoms on the physical level can be extremely important, but there’s more to healing than that; dealing with psychological, emotional and spiritual issues involved in treating sickness is equally important”, Marianne Williamson
I have become discouraged of late with a fibromyalgia group on Face Book. One person asks about a particular symptom and others write in that they too have the symptom. While it helps to know that others are suffering to the same extent, it leaves the person feeling helpless and a victim to the dis-ease. This is especially so when we become focused on symptoms. To be fair, sometimes there are often good suggestions as to how to deal with a particular issue, and for the most part it is a forum for support, that can be comforting. But fibromyalgia is more than just a list of symptoms. Not only do we have many of the same challenges among ourselves, but there are other conditions that are alike and can define us as well. We do not have a disease, but a dis-ease and fibromyalgia is one part of a family of triplets and one other sibling.
” Highly sensitive people are too often perceived as weaklings or damaged goods”, Anthon St. Marten
Anton St. Marten writes that to feel intensely is “the trademark of the truly alive and compassionate”. Rather than believing that the person who is highly empathetic and sensitive is weak , it is, in fact, general society that is dysfunctional and often lacking in empathy.
“Over-controlled by anxious, fearful parents, these children often become anxious and fearful themselves”, Susan Forward
Recently a commentator on one of the blogs wanted more of my personal information. She said that I was prone to write about others rather than myself. This, of course is true, although I have leaked a few lived experiences of my own over the course of writing these fibromyalgia blogs for many years. First, I want to point out that fibromyalgia and chronic fatigue are caused by trauma that needs to be addressed early in life and only talk therapy will begin to help our suffering. This is why I am sharing my own childhood experiences that have set me up for anxiety, panic attacks and night terrors.
“Coping with a chronic illness is work”, Carolyn Thomas
A very new book has just been published by Carolyn Thomas: A Woman’s Guide to Living with Heart Disease, Baltimore: Johns Hopkins University Press, 2017. It is one of a kind! Finally, a book that allows the woman with heart disease or those with a family history of heart disease, to pour over it and sigh with relief as questions about the leading cause of death among women is now in print as a source of expert information. Furthermore, it is written in a style everyone can understand.
“When anxious people anticipate something bad about to happen- such as being confronted with creepy pictures of snakes or spiders- their right frontal insulas go into overdrive”, Blakeslee and Blakeslee
Many of us with fibromyalgia can remember childhood as the beginning of a life time of fear, and anxiety. Since there might have been a significant childhood episode that triggered this dis-ease called fibromyalgia, it stayed with us while other troublesome events in our lives piled these generalized feelings one on top of the other. It is as if we accumulate and store anxieties in our psyche (frontal insula of the brain) until we can’t differentiate between everyday events that aren’t fearful and those that are. We feel things too deeply. Our empathy capacity is filled to overload. We cannot respond healthily to any form of drama or excitement. While there are some of the beginning signs of this in childhood, such as a tendency to have symptoms such as fainting, hyperventilating, or to have panic attacks, it appears as though we are usually able to live a normal life until a major crisis brings us full on to fibromyalgia, generally in middle age. Rather than this being a beginning it is usually the end of the lifelong tendency headed for the finale. A central nervous system that can no longer keep the brain from responding to this build up of anxieties in highly sensitive persons is the way I describe fibromyalgia.
” What I want for my fans and for the world, for anyone who feels pain, is to lean into that pain and embrace it as much as they can and begin the healing process”, Lady Gaga
There has rarely been such public awareness of fibromyalgia as there is now that Lady Gaga has become public about her own suffering. While there are thousands of those of us who suffer from the debilitating pain and fatigue of this syndrome, many still believe it is malingering.
” To let go is to release the images and emotions, the grudges and fears, the clingings and disappointments of the past that bind our spirit”, Jack Kornfield
In the newspaper today there is an editorial written by Jane Brody titled “More specialists explore treating pain without drugs” (The Globe and Mail, L5, September 15, 2017). She cites the conditions that drug free options for pain can help with, such as fibromyalgia, news of which was published last year by Richard L. Nahin in the Mayo Clinic Proceedings.