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 concepts:

• 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 as depression.
• 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 areas:

• 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 ~ HHV-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 cord level"
• "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 pain.

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.