Guest Blogger: One Woman’s Fibromyalgia Journey

Please welcome guest blogger and author, Barbara Keddy, BSc.N., M.A., Ph.D., Professor Emerita, School of Nursing, Dalhousie University, from Halifax, Nova Scotia, Canada. You can read more about Barbara at the bottom of this post.

Sandy’s Notes: Last week I had written a post, Retired Professor Speaks Out On Fibromyalgia, and said in that post that I would love to have Barbara as a guest blogger because I would like her to share with others what it is like having Fibromyalgia for so many years. Well, here she is this week as a guest blogger!

I lived in Montreal, Canada as an only child, without any siblings (until I was almost eight) in a working class neighborhood. My mother, still living at 90, is a very passive, child-like sensitive, woman with many fears. My father, also still living at 90, is the dominant, aggressive and often angry parent. They are not mean minded parents, nor uncaring, but the product of their own upbringing and so are we all.

There were many things to be sensitive to in our home and many things to be wary of outside the home with the polio scare and the nuns in the Catholic, all girl school. Our first day at school, at five years of age, required us to spend an hour on our knees before a huge cross asking Jesus to forgive us for killing him. Then, we were required to kiss the cross after the nun had cleansed it with a disinfectant. This was the common ritual every morning. We were crying little youngsters who wore black uniforms with white blouses and always had to wear long stockings, even in the spring and fall heat seasons.

I cried every night, hyperventilated, often fainted, fearful I would die and go to hell. I began sleepwalking at that early age. I had nightmares. I often had difficulty breathing, no doubt leading to the fainting spells. I had trouble eating and was a skinny child. I often felt ill, but going to a doctor for these ailments was not common. When I was finally taken to one my parents were told I was to be fed more to avoid contacting tuberculosis. Not a completely full blown fibromyalgia sufferer yet, but the seeds were being nurtured.

Although there was no name or diagnosis for fibromyalgia at that time, there is little doubt that I had the beginnings of hyper-sensitivity and consequently fibromyalgia would eventually be a life long dis-ease for me. My nervous system was usually on high alert. Was it genetic or socially induced (nature vs. nurture?). I dont know the answer to this. I was acutely aware of not incurring my fathers wrath or the nuns displeasure. I frequently experienced dj vu episodes which I found disturbing. I was my mothers mother, always keenly aware of her fears and trying to become her guardian and anticipate her needs. Her own relationship with her mother was one which left her needing nourishing.

When I was an adolescent our family of four (by now I had one other sibling, a sister, almost eight years younger than I) moved to a small town in Nova Scotia. The nuns at that school were much more relaxed. I kept waiting for them to explode and was very wary for that first year. There were boys in the class too and they made me very apprehensive. It was a traumatic year. I rarely spoke in the classroom for the first couple of years.

My childhood was not as harsh as many, yet my report cards always reflected that I was very sensitive. I was never physically nor sexually abused. I was never without food or clothing. Growing up is a difficult time for most children. Mine was not overwhelmingly terrible. I cannot justify whining over real or imagined emotional neglect.

In her book Elaine Aron (The Highly Sensitive Person) writes that in all the animal kingdom there are many who are born with highly sensitive nervous systems. Compare a poodle to a lab dog, for example. Some of we humans have nervous systems that are constantly on alert, hyper-aroused, and become over stimulated to such an extent that fibromyalgia and chronic fatigue eventually develop. I still dont know if it is inherited or developed early in life.

When I was 17 I moved into a nurses residence and began three years of the most rigorous physical and mental experience that was possible. This was not a good place for me but I did not recognize this until many years later. Although I was a high energy young girl, the amount of heavy lifting, responsibility and caring required of me was excessive. As student nurses in a non-teaching medical hospital (without medical students) we were used as a source of free labour. We were often on night duty for 12 hours on wards with an orderly or an assistant of sorts. We had to make life altering decisions that no teenager should be expected to do, in a hospital with few RNs and no resident physician. We were the substitutes for medical students and interns.

Physically I suffered dreadfully. Every ailment a patient had I believed I did too (although this is quite common among nurses and doctors I was overly empathetic with my patients). My periods stopped. I ate little. I had pain everywhere, bouts of unexplained illnesses, and fatigue. There was no name for my many physical miseries. I rarely reported these vague symptoms. By now I had more than the beginnings of fibromyalgia, but of course did not have the label. It was easier to remain silent than be labeled a hypochondriac.

I married at 20 and had my first child at 25 after a long and difficult labour followed by a C section. In those days the cuts extended from belly button to pubis. I was in hospital for 11 days. I could not walk without excruciating pain in my knees and legs. Tests were done. They speculated that I had gout! I was 25, thin and did not drink, smoke or eat foods related to the onset of gout, and although gout can begin at any age I knew the tests were inconclusive. I experienced pain all over. No one could tell me what was wrong with me. In hindsight I know now that I was at that point a permanent fibromyalgia sufferer.

Within the next 4 years I had two more C sections and I worked at various nursing jobs in the evenings. The family moved to a city and I began university. While I was doing my PhD I began teaching at the university at the same time. The children and I did our homework together. I became a single mother of three sons, doing a PhD and had a full time job.

At one point I was stalked for several months, a frightful experience. Later I remarried and then two more children (my stepchildren) were added to our household, making the grand total of five teenagers. My symptoms of fibromyalgia became intense. I worked hard at home and at the university, in spite of pain and fatigue.

I went from doctor to doctor with my aches and pains. I had test after test, which did not reveal anything at all. I looked very healthy I was told. I would come home from work and sometimes go immediately to bed before the children. I kept thinking I had repeated bouts of flu. One physician kept giving me antibiotics for this mysterious pain and fatigue I experienced. Earlier when my sons were younger, on an outing with them I had almost collapsed on a bench with extreme fatigue which was very frightening for us all. I alternated between fatigue and pain, usually both at the same time.

At one point I had seen a caring and understanding rheumatologist in 1977 and immediately told him I had terrible arthritis. He laughed and said absolutely not. But, even he, in his compassion, could not tell me what the problem was. He was later, in the 1980s, to give more attention to the women in his practice who did not have arthritis, later to have been diagnosed with fibromyalgia. I heard this many years later from several women I interviewed who said he was among the first in their locale to put a label on this syndrome. Unfortunately he died in an accident and I was unable to meet with him again, or interview him as a pioneer.

One physician suggested I see a psychiatrist as I was overly anxious. Those visits were short and few as her intent was that I would stay on an anti anxiety medication to deal with my hysteria.

By now I resisted going to physicians and began to investigate my own condition. I stumbled upon the word fibromyalgia, just as the internet became accessible. At first I kept this information to myself and decided to speak with anyone I could find who could relate to my pain and fatigue.

The children grew up, left home and my husband and I were on sabbatical on the west coast. I heard of a semi-retired internist whose own wife had fibromyalgia and I was able to track him down, living on a small island in British Columbia. He agreed to see me and the diagnosis was finally made. It was confirmed by this reputable physician that I had fibromyalgia after almost a lifetime of wondering what was wrong with me. Even before I saw this physician I knew, but I needed the label. In fact, it was liberating. I was 59 years old.

I began the research project that led to my book Women and Fibromyalgia: Living with an Invisible Dis-ease. In there I had some aha moments whereby it became clear to me and to the other women I interviewed that this was not a disease in the usual sense of the word. I have developed that theory further and taken it a step beyond others who agree with me that fibromyalgia is a condition brought on by an over-aroused nervous system in ultra-sensitive persons. In particular, I discuss in detail why this condition is more common in women. Like Elaine Aron, (who, by the way, does not discuss fibromyalgia) I now chose to see highly sensitive persons as people with a gift rather than a liability. Unfortunately, this comes with a price: pain and fatigue, not to mention other undesirable symptoms. Rather than seeing ourselves as weak women (mostly), I prefer to view us as strong women who will become the pathfinders for those who follow. In the words of Eleanor Roosevelt : A woman is like a tea bag-you never know how strong she is until she gets in hot water. Those of us with fibromyalgia and chronic fatigue are a strong force to be reckoned with!

Please visit my website Women & Fibromyalgia.

Barbara is married with 3 children, 2 stepchildren, and six grandchildren. She has taken her years of knowledge and dedication about Fibromyalgia and has written a book that you can purchase through her website, Women and Fibromyalgia: Living with an Invisible Dis-ease.