Oregon 98 Fibromyalgia Convention Report
On Sept 19 and 20, The Oregon Fibromyalgia Foundation (OFF,
headed by Dr. Sharon Clark) sponsored the Oregon 98 Fibromyalgia
Convention in Portland, Oregon. The theme of this second biannual
event was "Practical Lessons from Contemporary Research".
Speakers covered a wide variety of expertise, from internationally
known researchers in fibromyalgia (FMS) and chronic fatigue syndrome
(CFS) and members of the Oregon Health Science University's (OHSU)
comprehensive fibromyalgia treatment program to fibromyalgia
writers and activists.
This year, most of the information centered on three broad
- FMS and CFIDS are similar complicated chronic illness conditions
with clearly defined symptoms and reproducible laboratory findings
that clearly distinguish patients with these conditions from
healthy controls and those with psychological illnesses such
- Pain is a major factor in both the symptomology and the pathogenesis
of fibromyalgia and chronic fatigue syndrome and should be aggressively
diagnosed and treated.
- Self management techniques for FMS and CFS, including cognitive
behavioral therapy, stress reduction techniques, physical therapy,
stretching, and appropriate exercise can alleviate current symptoms
and may lead to an overall lessening of future symptoms.
Robert Bennett MD, FRCP, FACP, (OHSU, FMS ), Don Goldenberg
MD, (Tufts University, FMS), Karl Henriksson, MD, PhD (Linkoping
University, Sweden, FMS & Pain) and Anthony Kamaroff, MD (Harvard
Medical School, CFS) outlined the current status of fibromyalgia
and chronic fatigue syndrome research and presented models for
understanding FMS and CFS. They referred to research in several
- neurohormones and brain chemicals
- altered pain amplification
- neuroendocrine (HPA- axis ~ hypothalamus/pituitary/adrenal)
- cerebral blood flow (SPECT and MRI scans)
- autonomic nervous system (neurally mediated hypotension and
postural tachycardia syndromes)
- EEG (higher prevalence of spike and sharp waves in CFS)
- infectious agents (reactivation of several chronic viral
infections in CFS with the strongest evidence of human herpesvirus-6
- spinal cord compression (cervical stenosis and chiari malformations).
The broad range of research currently being done indicates
that physiological changes are occurring in both FMS and CFIDS
that can be documented. They are widespread and cover nearly
every system in the body. When research is done comparing FMS
patients with other chronic pain groups, those patients with
FMS are clearly definable When research is done comparing fibromyalgia
or chronic fatigue syndrome patient groups to those with depression,
there are clearly definable differences in test results. Research
in both FMS and CFS seems to indicate that there may be more
than one causal agent and more than one mechanism causing symptoms
in both illnesses.
Dr. Kamaroff presented the most current understanding of CFS,
"at this time, most investigators studying CFS believe that
the illness involves abnormalities of the limbic system of the
brain, abnormal regulation of the immune system [possibly as
a result of limbic system abnormalities], and [in some cases]
reactivation of latent viruses [incl. enteroviruses, HHV-6 ,
and occasionally Epstein-Barr virus and cytomegalovirus]. A single
cause seems unlikely; multiple triggering agents [viruses, toxins,
stress] could be involved in different cases."
He went on to point out that although people with CFS do often
suffer from depression following onset of their illness, treatment
for depression does not alleviate the underlying illness even
though some of the medications used to treat depression are useful
for symptom treatment (tri-cyclic antidepressants for sleep and
pain and seratonin reuptake inhibitors for fatigue).
Dr. Karl Henriksson's model for understanding fibromyalgia
is based on pain and its effects. "Fibromyalgia is a combination
of a chronic pain condition and a chronic stress syndrome and
the two syndromes together may be considered a pain disease."
There is a wide variety of evidence that pain sensing mechanisms
are altered in FMS patients.
- "There is a general agreement that the main cause of
allodynia [pain sensitization ~ when stimuli which would not
normally cause pain are painful] is a disturbance in the pain
modulation in the central nervous system, especially at the spinal
- "activation of NMDA receptors [activated when there
is a persistent or repetitive pain] leading to central sensitization
and allodynia is an important factor "
- "aberrations in seratonin metabolism could contribute
to deficient pain inhibition"
- "increased levels of substance p in the cerebro-spinal
fluid [common in FMS patients] could be a consequence of persistent
stimulation of nociceptors [pain receptors located in the connective
tissue in muscles]"
Dr. Karl Henriksson explained the connection between pain
and stress syndrome which he believes creates many of the other
symptoms and laboratory abnormalities in FMS, "An amplified
and more or less continuous pain signal constitutes a continuous
stress factor. Adaptation to this stress can lead either to an
increased stress response or deficient adaptive response from
the stress regulating systems [such as neuroendocrine system
and autonomic nervous systems]."
Although fibromyalgia and chronic fatigue syndrome are currently
studied as two separate syndromes, all of the researchers agreed
that there is considerable overlap in the two conditions and
that understanding stress syndromes (the physiological changes
caused by pain, biological or psychological stresses) was central
to an understanding of treatment for both illnesses. There are
a wide variety of medications available which address various
aspects of the physiological changes occurring and careful experimentation
can often produce dramatic reductions in symptoms.
Dr. Steven Campbell, MD (OHSU, FMS) laid the groundwork for
understanding why treating the stresses which would cause stress
syndromes is so important. He explained that the human body is
constantly trying to gain a level of homeostasis (a steady healthy
state of function). It responds to stress with a series of biological
changes designed to help the body cope with the stress. "The
stress response is not just emotional, but a complex biological
process involving the brain and body, involving nerves, organs
neurotransmitters and hormones. Many seemingly unrelated symptoms
can sometimes be linked together as part of an abnormal or maladaptive
stress response." If a stress is constant (such as frequent
or severe pain), the brain learns from experience; it will respond
by changing the body's response to stress by increasing the amount
of the response to each subsequent stress.
"The importance of this is that what goes up may come
down: if increases in stress response can be learned by experience,
perhaps they can be unlearned. .... This gives support for the
concept of stress management [including pain management] having
long term benefits."
Mark Pellegrino MD (FMS author), Chris Henriksson PhD, OT
(Linkoping University, Sweden, FMS), Connie O'Reilly PhD (OHSU)
and Carol Burkhardt, PhD (OHSU) spoke of the stressful impact
of Fibromyalgia on daily life and outlined helpful behavioral
adaptation techniques including cognitive behavioral therapy
and stress reduction techniques. Dr. Pellegrino pointed out that
we can look for behavioral adaptation in such simple activities
as keeping the knot in a tie when we take it off so that it doesn't
have to be tied again. Dr. Chris Henriksson explained, "People
with pain have difficulty activating their muscles and maintaining
muscle force. The consequence of this is that muscle power and
endurance are decreased and the person has difficulties in lifting
and carrying objects and in holding tools and other objects."
Every activity we modify to produce less pain will lessen the
total pain load and ease symptoms.
Modifying behavior to cause less pain requires a change in
our habits and in the way we think about ourselves. As Dr. Burkhardt
pointed out, we all have a running internal dialogue, "this
cognitive part is always rationalizing, scheming, analyzing,
evaluating and at times, distorting reality". Our internal
dialogue can support us and help us to make the changes we require
to function fully or it can sabotage our efforts by belittling
our accomplishments. She quoted the ancient writer of proverbs,
"A depressed spirit saps one's strength but a happy mind
is good medicine." Cognitive therapy helps us to identify
patterns that stop us from adapting our lives.
Dr. Chris Henriksson said that one of the simple truths she
has learned from studying countless FMS patient groups is that,
"when you have fibromyalgia, you usually have to change
the way in which you perform activities and expect them to take
longer and to require more effort to carry through. [However]
I have learned from my patients that there are few activities
that can never be performed." Behavioral and cognitive adaptations
do pay off in enhanced quality of life.
Using deep relaxation techniques pays off in more than an
enhanced quality of life. Dr. O'Reilly explained that, "extensive
research shows that the regular use of deep relaxation techniques
decreases the responsiveness of the sympathetic nervous system."
It has both immediate and long term effects.
Sharon Clark RN, PhD (OHSU), Lois Copperman OT, PhD (OHSU),
Katherine McCoy RPT (Portland physiotherapist) and Cinda Hugos
MS, RPT (OHSU) outlined the usefulness of physical and occupational
therapy along with appropriate stretching and exercise to control
pain and increase mobility. Dr. Clark emphasizes that it is important
to learn to stretch properly. Stretching too far will cause a
muscle to tighten, not loosen. Stretches that are improperly
performed will often work opposing muscles and cause the muscle
you wished to stretch to tighten. And exercising too strenuously
will aggravate pain. However, an appropriate stretching and exercise
program will increase both muscle power and endurance and decrease
Every presenter at the Oregon 98 Fibromyalgia Convention stressed
the importance of patient education in managing fibromyalgia
and chronic fatigue syndrome. There are a lot of different treatment
modalities available that will reduce both current symptoms and
the overall severity of illness. Successful FMS and CFS treatment
is a highly individual combination of medications, pain management
techniques, behavioral modifications, cognitive modifications,
stress reduction techniques, and appropriate stretching and exercise.
Experimentation (with the help of your own FMS/CFS management
team) should lead to finding the combination that will ultimately
be successful for you.