Why my interest in fibromyalgia?
Recently, I was talking to Anne a schoolteacher and mother with
fibromyalgia. She was very well informed, understood the nature
of fibromyalgia and had developed a large number of useful strategies
for dealing with the problem. She had traveled a long way to see
me and explained “I don’t expect a cure, I just wanted
to talk to you about fibromyalgia”. She said she appreciated
talking to someone who took the problem seriously yet not “over
the top about it”. She wondered why many other health professionals
had not taken time to understand fibromyalgia and to help people
with the problem. She was particularly interested in why I developed
an interest in fibromyalgia. Was it by accident or design –
some personal experience, or some other reason?
Art, science, body and
My initial answer was that it was by accident – it just came
with the territory. I was after all a rheumatologist and bodily
pain is a common result of many rheumatic and arthritic disorders.
However, on further reflection I realized that fibromyalgia is as
personal to me the treater as it is to the person being treated.
Fibromyalgia is a condition that allows exploration of the breadth
of medicine like no other disorder. It requires skills in both the
science and the art of medicine. But perhaps more importantly it
links change in function of both body and mind, both contributing
to the full picture, without prejudice, both important, both part
of the one human condition.
Dimensions of fibromyalgia
There are many interesting aspects to fibromyalgia. The first is
that of diagnosis. This involves careful
definition of the complaints and examination findings, looking at
results of appropriate investigations and considering all possibilities.
Then, these elements are pieced together like an elaborate jigsaw
puzzle to make a diagnosis, which is unique to each person.
What are the mechanisms of the complaints?
This requires analysis of research information ranging from molecular
biology of chemicals involved in pain transmission, knowledge of
anatomical pathways of pain and how pain mechanisms are modulated,
amplified or damped down, by the brain. As well, why does the body
react as it does? What causes the altered biomechanics of the body,
the stiff and painful spine, muscles and joints? Why the fatigue,
dizziness and change in many body functions?
Finally, what determines the severity of the responses
of the individual to the problem? How does societies’ response
to the problem affect the individual and what differences are there
in this response between different parts of any one society and
between those in different countries.
Fibromyalgia allows for understanding of all of the above dimensions
which in themselves each contribute to the essential nature of an
individual – their beliefs, their fears, their tragedies and
their triumphs – and the symptoms their bodies produce. As
a process, fibromyalgia allows for exploration of the very broad
expanse of medicine, which I had long ago sought when I chose this
as my life’s work. Perhaps I would never be that bare-foot
doctor that I had once perhaps imagined but at least I could be
a similar medical pilgrim in the society in which I lived.
I trained to be physician, a specialist in medical disorders. In
the late 1970’s I wanted to choose one particular specialty
on which to focus. I had trained in most of the relevant areas –
cardiology, endocrinology, gastroenterology, respiratory medicine
- but I had not experienced rheumatology. There seemed to be a deficiency
in this area in my hometown at the time and I was encouraged to
train further in this area. At the same, at my hospital in Melbourne,
Prince Henry’s Hospital, there was strong influence from the
Department of Psychological Medicine in the training of medical
specialists. In particular, Dr Bill Orchard, one of the hospital’s
leading psychiatrists, developed a program where the psychological
aspects of illness were discussed in the context of patients’
medical complaints. It was my role to help organize these interactive
sessions for the non-psychiatric medical trainees and through these
sessions a lot of his influence rubbed off on my approach to illness.
He emphasized the link between psychological and somatic aspects
of illness. Even in patients with conditions that seemed entirely
due to a very specific organic course, such as a heart attack, the
effect of the individual’s moods, their distress, and their
life circumstances all contributed to their medical presentation.
I decided to specialize in rheumatology and traveled to Toronto
to train for a further two and half years. The head of that innovative
and extensive training program was Professor Hugh Smythe. Smythe
was one of the great Canadian rheumatology thinkers. He had an established
interest in Fibrositis, as it was then called, having written a
key textbook chapter on the condition and he regularly discussed
aspects of management on his routine Wednesday ward round. He focused
on the biomechanical aspects of the disorder, realizing that much
of the pain mechanism related to strain or poor support of the low
neck and back. He established methods for neck support at night
and the emphasized the value of abdominal stabilizing exercises
for low back complaints. He defined the clinical characteristics
of fibromyalgia linking the complaints of musculoskeletal pain to
the individual’s tenderness, particularly at specific sites
known as tender points.
Smythe joined forces with Harvey Moldofsky, later Professor of Psychiatry
in Toronto. Moldofsky brought input from a psychological dimension
and together they identified and studied the poor quality sleep
that characterizes fibromyalgia. They thus linked factors affecting
the individuals’ emotional well being to their bodily symptoms.
This was pretty impressive for a trainee in Rheumatology. The personalities
of these two individuals, their expert clinical skills and their
enquiring minds led to the laying down of a substrate of information
on this disorder which I have drawn on, and expanded, since that
In those days, the early 1980’s, fibromyalgia was not considered
a mainstream problem to deal with in rheumatology. In fact, prior
to my going to Toronto, I was warned by the leading rheumatologist
in Melbourne that Smythe “believes in fibrositis”. I
didn’t know quite how to take that at the time. It was as
if I was being warned that Smythe believed in fairies at the bottom
of the garden and that fibrositis was an imaginary disorder. It
was not important, had no impact, and was best forgotten about,
too difficult, not to be encouraged, “the soft under belly
of rheumatology”. These observations have been reflected by
others and remain far from the truth.
I returned to take up the position of head of Rheumatology at Prince
Henry’s Hospital. I was armed with the latest knowledge of
a wide variety of rheumatic disorders. Patients I saw came from
many backgrounds, had many conditions and required many different
treatments. Pervading through the whole group however was the complaint
of widespread pain, the finding of abnormal tenderness and the other
associated features of fibromyalgia. This group of patients was
common. Patients with these symptoms were often dismissed as being
depressed, dismissed as being unimportant, dismissed as having another
non-specific diagnosis, or as was often the case treated for a condition
that they didn’t have. There was no plan of attack; no understanding
of the mechanisms of the problem and the outlook for some people
in those times was poor.
It took sometime to establish the legitimacy of fibromyalgia in
those days. This initially came through regular discussion with
colleagues, including many publications. Also, I became involved
in early fibromyalgia research that later was to boom.
Another important factor in my interest in chronic pain and fibromyalgia
came through an epidemic of work related arm pain in Australia.
I recall reading a front-page article in the local paper, The Age,
in August 1980. The president of the local arthritis foundation,
a prominent rheumatologist, was discussing the problem of work-related
tendonitis and how it was increasing. This received much publicity.
Others started to observe the same effect and soon patients started
to report more frequent episodes of work-related pain. Over time
an incredible epidemic of arm pain occurred not only in my home
state but also throughout Australia. This peaked in the mid-1980’s
and gradually subsided to the background levels by the early 1990’s.
At one stage up to a third of work places had persons off work due
to arm pain.
This condition became known as “RSI” (repetitive strain
injury). Yet despite intensive investigation ongoing injury was
not found to be the cause for the problem. Application of knowledge
about fibromyalgia allowed for understanding of this condition as
a regional or localized type of fibromyalgia that was called among
other things regional pain syndrome. With better understanding of
this condition the epidemic waned. Application of the knowledge
that colleagues and myself had of the essential process behind fibromyalgia
and its application to this “new” disorder helped the
epidemic subside. This epidemic vividly demonstrated the highly
potent effects of emotionally charged societal events in causing
human distress with its subsequent translation into activation of
Over time fibromyalgia has become accepted as a common and characteristic
chronic pain condition. The mechanism of fibromyalgia and the implications
of the word are now much better appreciated in the medical and health
community. This has led to better management of the problem with
particular strategies exploring just who is responsible for the
condition. As time passes the mechanism of fibromyalgia will be
further elucidated. It is possible that another name will be applied
to the disorder, just as over 40 previous names have been applied
over the last 100 years. As with all human biological processes
we must expect change and we must adapt and move with it to allow
better understanding and management.
Pain and hope
I have never experienced the symptoms of
fibromyalgia -the persistent muscular stiffness, the widespread
pain, aching and burning discomfort, the numbness and tingling in
the hands, the headaches, the profound fatigue, the sleep disturbance.
To have such symptoms must induce considerable distress in an individual.
This is distress that I haven’t experienced. Like many health
care professionals I can only offer empathy and encouragement towards
seeking a solution to the problem.
My hope is that the biological process
that we name as fibromyalgia is more clearly understood by both
health professionals and by those with the disorder. I believe this
is the first and most essential part of an appropriate management
strategy to reverse fibromyalgia. With time better, quicker and
more resilient treatments will be identified but will not replace
what we already know – that the start of fibromyalgia reversibility
is already in our own hands.