You are not Imagining it

Editorial by Martin Westby

Many sceptics have debated the very existence of fibromyalgia as a clearly distinct disorder, saying it seemed to be rooted more in psychological and social factors than in physical, biological causes. Their argument has been bolstered by the failure of research to find a clear cause, an effective treatment, or a non-subjective way of assessing patients.

While the debate has raged, neuroscientists have begun to use brain scan technology to identify the areas of the normal human brain that become most active during pain. A few studies have even assessed the blood flow in those areas in fibromyalgia patients during baseline brain scans.

A new brain-scan study confirms scientifically what fibromyalgia patients have been telling a sceptical medical community for years: They're really in pain. The new study is the first to use both high-speed scanning and a painful stimulus.

The study finds, people with fibromyalgia say they feel severe pain, and have measurable pain signals in their brains, from a gentle finger squeeze that barely feels unpleasant to people without the disease. The squeeze's force must be doubled to cause healthy people to feel the same level of pain - and their pain signals show up in different brain areas.

The results, published in the current issue of Arthritis & Rheumatism, the journal of the American College of Rheumatology, may offer the proof of fibromyalgia's physical roots that many doubtful physicians have sought. It may also open doors for further research on the still-unknown causes of the disease.

Lead authors Richard Gracely, Ph.D., and Daniel Clauw, M.D., did the study at Georgetown University Medical Centre and the National Institutes of Health, but are now continuing the work at the University of Michigan Health System.

To correlate subjective pain sensation with objective views of brain signals, the researchers used a super-fast form of MRI brain imaging, called functional MRI or fMRI, on 16 fibromyalgia patients and 16 people without the disease. As a result, they say, the study offers the first objective method for corroborating what fibromyalgia patients report they feel, and what's going on in their brains at the precise moment they feel it. And, it gives researchers a roadmap of the areas of the brain that are most - and least - active when patients feel pain.

"The fMRI technology gave us a unique opportunity to look at the neurobiology underlying tenderness, which is a hallmark of fibromyalgia," says Clauw. "These results, combined with other work done by our group and others, have convinced us that some pathologic process is making these patients more sensitive. For some reason, still unknown, there's a neurobiological amplification of their pain signals."

In the study, fibromyalgia patients and healthy control subjects had their brains scanned for more than 10 minutes while a small, piston-controlled device applied precisely calibrated, rapidly pulsing pressure to the base of their left thumbnail. The pressures were varied over time, using painful and non-painful levels that had been set for each patient prior to the scan.

The study's design gave two opportunities to compare patients and controls: the pressure levels at which the pain rating given by patients and control subjects was the same, and the rating that the two different types of participants gave when the same level of pressure was applied.

The researchers found that it only took a mild pressure to produce self-reported feelings of pain in the fibromyalgia patients, while the control subjects tolerated the same pressure with little pain.

"In the patients, that same mild pressure also produced measurable brain responses in areas that process the sensation of pain," says Clauw. "But the same kind of brain responses weren't seen in control subjects until the pressure on their thumb was more than doubled."

Though brain activity increased in many of the same areas in both patients and control subjects, there were striking differences too. Patients feeling pain from mild pressure had increased activity in 12 areas of their brains, while the control subjects feeling the same pressure had activation in only two areas. When the pressure on the control subjects' thumbs was increased, so did their pain rating and the number of brain areas activated. But only eight of the areas were the same as those in patients' brains.

In all, the fibromyalgia patients' brains had both some areas that were activated in them but not in controls, and some areas that stayed "quiet" in them but became active in the brains of controls feeling the same level of pain. This response suggests that patients have enhanced response to pain in some brain regions, and a diminished response in others, Clauw says.

The ACR released classification criteria for fibromyalgia in 1990, to help doctors diagnose it and rule out other chronic pain conditions. Clauw and Crofford's editorial looks at the current state of research, and calls for rheumatologists to take the lead in fibromyalgia care and science.

Meanwhile, in the UK

Hopefully this new research will be read by British Rheumatologists - there seems to be a substantial element of the medical community here who continue to argue that the psychiatric model explains fibromyalgia and that no physical evidence exists for the condition, meanwhile a growing body of evidence (mostly from America) continues to dispute this argument.

So at the same time as an All Party Parliamentary Group is investigating Fibromyalgia and the head of the Department of Works and Pensions is criticising doctors who say it is all in the mind-we have the British Medical Journal voting FM a non disease and the British Journal of General Practitioners describing Chronic Fatigue and other PUPS (Persistent unexplained physical symptoms) in the following way “The prevailing view in UK primary care has been that somatisation of mental illness is the basic problem” (1).

The mental health lobby often fail to include, or to be unaware of, the mounting medical-neurological-immunological evidence demonstrating the medical nature of FM.

In addition to the new research listed above Dr Robert Bennett (professor of medicine in Portland, Oregon) quotes the following objective finding for fibromyalgia: Tender Points, Sensory thermal testings, Elevated CSF levels of neuro-transmitters, Enhanced somatosensory potentials, Abnormal brainscans, Abnormal sleep Eeg’s, Abnormal sympathetic function and Dysregulated hormonal secretion.

As in many chronic conditions there is an increased prevalence of psychological diagnoses in fibromyalgia patients (2); however the converse is not true. For instance, fibromyalgia is not common in patients with major depression; even depressed individuals who complain of pain did not have multiple tender points in one study (3).

The closest model we have to gauge our progress in the recognition of fibromyalgia is the work done on behalf of Chronic Fatigue and ME. (4).

When Sir Liam Donaldson (the government's chief medical officer) recently published the report into CFS and ME, some serious divisions opened up, four clinicians and two representatives of patient groups on the working party declined to endorse the final report.

The doctors, mainly from the mental health field, "felt very strongly that the psycho-social side of the problem should have had more emphasis in the report."

There has been very little research, says the ME report, but what evidence exists suggests that graded exercise therapy and cognitive behaviour therapy (CBT) are most successful. The report also says that "pacing" which patients prefer - helping them find a level of activity, which does not overstretch them - may be useful.

CBT is also a favoured recommendation for FM sufferers -the assumption here is that the condition benefits from a psychosocial approach. By declaring that CFS, ME and FM have a psychological basis and suggesting that CBT will do a therapeutic job implies a major psychological causative factor.

The ME lobby group are currently monitoring the composition of the members of the new UK Medical Research Council research strategy group for CFS/ME to ensure that a broad cross section of specialisms are included specifically neurology, neuro-imaging and virology.

Misunderstood diseases have a long history in medicine. Experience shows that many conditions for which medical science did not have an explanation were first claimed to be psychiatric, for example within our lifetime, MS used to be called hysterical paralysis; in the 1940s, asthma was said to be 100% psychological and before the discovery of Helicobacter, gastric ulcers used to be ascribed to an anxious personality.

A large number of people suffered as a result of the medical community jumping to a psychiatric solution for these conditions and its seems unthinkable that exactly the same mistakes could be made in 2002 for the present generation of fibromyalgia sufferers.

It is obvious that the absence of a proven medical treatment for fibromyalgia, which can be shown to be effective in controlled trials, means that sufferers will continue to search for treatments that whilst not giving them their lives back may help them say, sleep better or manage the pain more effectively.

If one of these approaches is cognitative behaviour therapy and there appears to me that evidence suggests that CBT helps reduce FM suffering in some patients (5), just as it does for those with arthritis, MS, and better-defined conditions, then why not try it as part of a multi disciplinary approach as you would with any of other FM relieving strategy, such as nutrition and diet, acupuncture, medication, exercise etc. etc.

(1) Wright A. A study of the presentation of somatic symptoms in general practice by patients with psychiatric disturbance. Br J Gen Pract 1990; 40: 459-463.
(2). Yunus, M. B., Psychological aspects of fibromyalgia syndrome: a component of the dysfunctional spectrum syndrome. Baillieres.Clin.Rheumatol., 8, 811,1994 .
(3). Fassbender, K., Samborsky W, Kellner M, Muller W. Lautenbacher S., Tender points, depressive and functional symptoms: comparison between fibromyalgia and major depression. Clin.Rheumatol., 16, 76,1997.
(4) Fibromyalgia and Chronic Fatigue/M.E. differ significantly. Evidence for a triggering viral infection is lacking in the majority of patients with FM. Most patients with FM show increased amounts of substance P in their cerebrospinal fluid but in CFS the values tend to be in the normal range.
(5) Chronic fatigue syndrome and fibromyalgia: Clinical assessment and treatment. J Clin Psychol 2001 Apr;57(4):433-455, Friedberg F, Jason LA Department of Psychiatry and Behavioral Science, State University of New York at Stony Brook.