FIBROMYALGIA AND WORK DISABILITY

CONTROVERSIES IN FIBROMYALGIA AND RELATED CONDITIONS
VOLUME 22 - NUMBER 2 - MAY 1996

FIBROMYALGIA AND WORK DISABILITY

Is Fibromyalgia a Disabling Disorder?
Frederick Wolfe, MD, and Joshua Potter, Esq.

It is a capital mistake to theorize before one has data. Insensibly one begins to twist facts to suit theories instead of theories to suit facts. -SHERLOCK HOLMES

It is often necessary to make a decision on the basis of knowledge sufficient for action but insufficient to satisfy the intellect. -IMMANUEL KANT

Work disability and fibromyalgia is an issue of increasing importance. In a recent report from six US centers, Wolfe et al ³⁹ indicated that 25.3% of fibromyalgia patients have received some type of disability payment, including 14.8% who received Social Security disability (SSD) payments. In addition, every day in the clinic patients present complaining of severe pain, fatigue, and inability to do their jobs, both in the home and in the work place. As best as can be done, the physician deals with such issues for his or her patient, but there often follow papers and assessment requests from employers, insurance agencies, and government. Depending on how the physician crafts his or her report and its content, the patient will or will not receive a disability award or will be referred to others for further assessment and determination. The general area of fibromyalgia and work disability has been the subject of recent conferences and reports. ^{2,3,23,26,27,31,35,38,39,42} This article is concerned with the issues of disability determination in fibromyalgia from the point of view of the law and the physician, including legal concepts and mechanisms and issues of validity and reliability. The contentions in law are most clearly developed in the area of SSD, and we concentrate most in that sphere. In addition, we present summary data concerning the rate of work disability.

DEFINITIONS AND MECHANISMS

The Process of Work Disability

The word disability can have two separate meanings: (1) functional disability and (2) work disability. Functional disability refers to the inability of a person to perform certain activities, such as activities of daily living, instrumental activities of daily living, or more complex tasks. Work disability refers to the inability to perform all or some of an individual's job. In the current discussion we use work disability to mean the inability to perform all or substantially all of one's work or to be unemployed because of functional limitations.

The World Health Organization (WHO) outlines a pathway by which a disease process causes an impairment that in turn leads to a disability that then leads to a handicap.43 The WHO definition indicates that a disability is a physical or mental functional loss (e.g., the inability to grasp an object or to stand for more than an hour). A handicap is the consequences of that disorder: the societal consequences of the disability, consequences that include the loss of one's job or the securing of disability payments. The widely adopted WHO definition uses the term disability to mean functional disability, whereas the common use of the term disability usually applies to work disability. Staying with the WHO definition, it is clear that a small disability can lead to a large handicap. For example, a pianist with a slight neurologic or arthritic problem in his or her hand may not be able to work as a pianist. The handicap that a WHO disability causes is dependent on factors such as job type, job setting, social support, societal interaction, and support (e.g., insurance or disability payments, societal attitudes, and so forth). More recently, the Americans with Disability Act has addressed similar ground as a matter of national policy (42 USC §12, 101).

The physician is most involved in the interaction with the patient and society concerning issues of disease, impairment, and (functional) disability, because the insurance and compensation system places emphasis on disease severity and functional impairment. In the larger world of work, however, job demands, possible job modifications,* and the internal, family, and community resources that the patient may have are of paramount importance. For clarity we do not use the WHO terminology, though its underlying construct is implied, but instead discuss functional disability and work disability.

A Broader Definition of Fibromyalgia

Fibromyalgia Is a Syndrome. It has been emphasized by all authors and investigators that Fibromyalgia is a group of signs and symptoms (a syndrome), not a disease; but this is not always understood by nonspecialists or by nonphysicians (e.g., insurance companies, lawyers, and judges). In addition, Fibromyalgia has a somewhat different meaning when it is considered outside of the clinic, and the definition of fibromyalgia as used in the clinic is not sufficient in the setting of work disability or compensation.

The Definition of Fibromyalgia: Content. Fibromyalgia is a syndrome of widespread pain, decreased pain threshold, sleep disturbance, fatigue, and often psychological disturbance or distress. Commonly, it is associated with clinical features, such as headache, irritable bowel and bladder syndrome, morning stiffness, subjective swelling, and paresthesias. This definition is supported by the Yunus et al44 criteria, which uses symptoms, and by the more parsimonious classification criteria of the American College of Rheumatology.41

The Definition of Fibromyalgia: Location. Fibromyalgia is a clinical invention. Its description and criteria come from the clinic; and it is only in the clinic that the reliability and validity of the syndrome and its content and criteria have been measured.

The Definition of Fibromyalgia: Purpose. Fibromyalgia is a clinical construct that allows physicians and others to describe and communicate to themselves a definition of one kind of chronic pain syndrome. Where appropriate, it also allows for communication between physician and patient. Sometimes it may not be appropriate to use the symbolic term fibromyalgia,37 and some physicians may choose not to use the fibromyalgia terminology. The syndrome, of course, is not changed by what we call it.

Sources and Requirements of Disability Payments
In the United States disability payments arise from a number of sources (Table 1). Three conditions are associated with such payments: (1) extent of work disability (full or partial); (2) causal relationship between aggravating event and disability; and (3) adequacy of overall financial resources. For sources such as workers' compensation, personal and automobile accident insurance, and non insurance litigation, a causal relationship between an injury and the development (or exacerbation) of fibromyalgia must be shown. In addition, at least some degree of functional loss is required.

Disability payments provided by employers or unions and disability from the federal government (SSD) do not require demonstration of a causal link between an injury or employment and disability. Such payers, however, require complete work disability or work disability severe enough to prevent substantial gainful employment. Public assistance or "Welfare" requires both proof of inability to work as well as lack of sufficient financial resources for the claimant or family. Many employer based disability insurance policies provide payments if the individual cannot perform his or her regular occupation during a fixed period of time (e.g., 1 or 2 years). Thereafter, the policy may apply to the inability to perform any occupation.

*Job modifications are addressed in the Americans With Disability Act.

Table 1. SOURCES OF DISABILITY PAYMENTS AND REQUIREMENTS

*Generally first 24 months own occupation, thereafter any occupation.
† Title XVI Social Security

THE SOCIAL SECURITY SYSTEM
Aspects of the Process of Disability Determination in the Social Security System

A worker* who believes he or she is disabled files an application with the Social Security Administration (SSA). The SSA interviews the claimant and requests the claimant's medical records. SSA has no published criteria or rules to govern fibromyalgia decisions. Because there are no published criteria or rules to govern the evaluation of fibromyalgia, decisions are made on an ad hoc, case-by-case basis. If there is insufficient evidence to determine eligibility, the SSA may request one or more independent medical examinations or may deny the claim. The SSA usually requests that the claimant's physicians provide a narrative summary or complete a detailed Residual Functional Capacity Assessment, a questionnaire regarding issues, such as the amount of weight that can be lifted; the ability to stand, bend, or sit, and so forth; or, failing this, to submit copies of medical records. This process has some immediate drawbacks. First, the type of information requested from physicians is not usually part of the routine clinical interview and most often cannot be provided. Second, the amount of funds provided for preparation of a narrative summary that requires 30 minutes to complete is very small (in Kansas in 1995 that amount was $20; and records are reimbursed for at $10). If the application is approved, the disability inquiry stops and the award begins. If disapproved initially, the first level for appeal is a request for reconsideration. Reconsideration is rarely successful. Overall, Hadler10 estimates that "the consideration and reconsideration process . . . results in a disallowal rate of about 70 percent." (These data apply to all claims. There are no specific data about fibromyalgia.)

An unsuccessful claimant may appeal for adjudication by an administrative law judge (ALJ). About 20% of claimants do request an ALJ hearing and about 50% are successful.10 A unique aspect of SSD is that the claimant may be represented by an attorney in his or her appeal to the ALJ, but the SSA is not so represented. The attorney-claimant combination can obtain new and detailed examinations as well as nonmedical evidence to support their position from sources they identify. Similarly, the SSA can call medical and vocational experts from their own list. In spite of the availability of expert testimony, the rules require that most weight be given to the opinion of the treating doctor, and onetime examinations may be given minimal to no weight. The government's non examining, non treating experts take on a more important role when the treating physician's records are inadequate to address the key issues. In all other situations--workers' compensation and the various accident and employment insurances--the disability granting agency has legal representation and can contest the claimant's representations actively.

A disapproved claimant may appeal to the Appeals Council, then to a federal district court, then to a circuit court of appeals, and under rare circumstances to the US Supreme Court (Fig.1). The US Court of Appeals sits in 12 circuits, each one handling the federal cases of many district courts (usually comprising courts in several states). Whereas the decision of the Supreme Court is the 'law of the land,' the decision of the Circuit Courts of Appeals is the law only for the district it serves. It is possible, for example, that the law in the sixth Circuit is different from that in the eighth Circuit. In fact, within the area of fibromyalgia different interpretation exists, though there have been general trends in the law throughout all of the circuits that we now describe.

*Actually a person is eligible for federal benefits by virtue of substantial present or previous employment and payroll contributions to FICA.

What Is a Disabling Illness? Evidence From the Social Security System

The congressional mandate for the determination of disability and awarding of compensation under the Social Security Act is found at 42 USC and the Social Security Administration Regulations, 42 USC App, 20 CFR §400 et seq. The Social Security Act was first passed in 1932 and amended in 1954 (see Fig. 1). Under these regulations the term disability means:

(A) inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or to last for a continuous period of not less than 12 months.

Certain other rules were imposed:
'A physical or mental impairment' is an impairment that results from anatomical, physiological, or psychological abnormalities which are demonstrable by medically acceptable clinical and laboratory techniques (42 USC §423[d][1]

Figure 1. Descriptions of terms and implementations of public law and case law.

In addition, the following regulations (addressed to applicants) were promulgated:

If you have a physical or mental impairment, you may have symptoms (like pain, shortness of breath, weakness or nervousness). We consider all your symptoms, including pain, and the extent to which signs and laboratory findings confirm these symptoms. The effect of all symptoms, including severe and prolonged pain, must be evaluated on the basis of a medically determinable impairment which can be shown to be the cause for the symptom. We will never find that you are disabled based on your symptoms, including pain, unless medical signs or findings show that there is a medical condition that could be reasonably expected to produce those symptoms (20 CFR §404.1529 and 416.929).

In 1984 Congress enacted the Social Security Disability Benefits Reform Act (Pub L No. 98-406), 98 Stat 1794.* Among the purposes of this act was to address the issue of disability relating to pain, an area that had not been addressed clearly in previous law. Congress was concerned about the lack of uniform standards regarding "subjective evidence of (disabling) pain." Subsequent codification of this legislation produced regulations such as:

An individual shall not be considered to be under a disability unless he furnishes such medical or other evidence of existence thereof as the Secretary may require. An individual's symptoms as to pain or other symptoms shall not alone be conclusive evidence of disability as defined in this section. There must be medical signs and findings, established by medically acceptable clinical and laboratory diagnostic techniques, which show the existence of a medical impairment that results from anatomical, physiological, or psychological abnormalities which could reasonably be expected to produce the pain or other symptoms alleged and which, when considered with all evidence required to be furnished under this paragraph (including statements of the individual or his physician as to the intensity or persistence of such pain or other symptoms which may reasonably be accepted as consistent with the medical signs and findings), would lead to a conclusion that the individual is under a disability (42 USC §423 [SI[A]).

In order to be found disabled, SSA requires the claimant first to have a medically determinable condition causing the alleged disability, and then to show that he or she is thereby disabled. The requirements for consideration for SSD are as follows:

1. Work disability must be expected to last at least 12 months.
2. It must prevent substantial gainful employment.
3. It must be the result of a medically determinable physical or mental impairment.
4. It must result from anatomic, physiologic, or psychological abnormalities that are demonstrable by medically acceptable clinical and laboratory techniques.
5. Disability will not be based solely on symptoms, including pain, unless medical signs or findings show that there is a medical condition that could be reasonably expected to produce those symptoms.

Fibromyalgia in the Federal Courts and Social Security System

Court decisions increasingly recognize the subjective nature of pain and the failure of conventional physical examination to document fibromyalgia or its severity. In Preston v Secretary, 854 F2d 815 (6th Cir 1988) the court wrote that "standard clinical tests to detect neurological and orthopedic disease are of little use except to exclude other diseases. Fibrositis causes severe musculoskeletal pain which is accompanied by stiffness and fatigue due to sleep disturbances. In stark contrast to the unremitting pain of which fibrositis patients complain, physical examination will usually yield normal results--full range of motion, no joint swelling, as well as normal muscle strength and neurological reactions . . . there are no objective tests that conclusively confirm the disease; rather [it] is a process of diagnosis by exclusion and the search for certain focal trigger points . . . " In Bunnell v Sullivan , the court pointed out, citing other sources, that "pain is a completely subjective phenomenon and cannot be completely verified or measured. Moreover, the level of pain caused by an impairment varies significantly according to the pain threshold and stamina of the individual victim."

Because this trend is relatively new, it is useful to review the change in thinking of the circuit and district courts regarding fibromyalgia. When the contemporary concept of fibromyalgia (even when called fibrositis) has been labeled as the disabling condition, courts have sometimes rejected the diagnosis as not being based on objective findings, (i.e., it is not "a medical impairment that results from anatomical, physiological, or psychological abnormalities.") This has occurred when the patient was diagnosed as having fibromyalgia based on his or her complaints of pain as well as when pain and tenderness is cited. In Szwandrok v Bowen , (658 FSupp 847 (NDIII 1987) the court noted that the "ALJ stated that the plaintiff bordered on not having a medically determinable impairment because her physicians based the diagnosis solely on plaintiff's complaint of pain." An ALJ, for example, cited in Rice v Sullivan , (912 F2d 1076 (9th Cir 1990), noted that "six years of medical examinations by some 21 physicians in a half dozen specialties, with many tests, have failed to establish any significant underlying pathology or cause for the claimant's multiple complaints," concluding that "the only medically diagnosed condition, fibrositis, does not explain or support Rice's alleged pain." The ALJ disregarded the rheumatologist's examination, " . . . There were no solid objective findings . . . just diffuse discomfort and complaints of trigger point tenderness . . . None of the tests demonstrated any pathology." Courts, like neurosurgeons and orthopedic surgeons (who were never found to diagnosis fibromyalgia in the cases reviewed) preferred radiographs, myelography, and MR images. The allowance of pain in the presence of pathology and its disallowance in its absence is important. Older individuals with fibromyalgia are likely to be viewed differently when radiographic abnormalities are present even though there is little evidence to link such abnormalities to either fibromyalgia, disability, or pain.30 This circuit court decision was later overturned by the ninth Circuit sitting as a whole in what arguably may be the most important decision in the area of fibromyalgia and disability.

Although the courts have been increasingly willing to accept fibrositis or fibromyalgia as a diagnosis, there has been great reluctance to accept it as a cause powerful enough to explain the patient's symptoms and functional and work disability. This (now older) viewpoint might be summed up this way: Maybe there is something called fibromyalgia, but because there is no pathology and no objective findings it cannot, under the law, be a disabling condition, and the patient is not entitled to disability benefits. This view, up to the ninth Circuit court reversal, was the prevalent view.

A landmark decision of the ninth Circuit in 1991, which overturned Rice v Sullivan has changed the prevalent view, although in theory the decision is effective only within the ninth Circuit (Bunnell v Sullivan ). The court considered three competing standards that might be used in evaluating disabling pain. The first, the Levin-Cohen Standard, was a standard proposed by Senators Levin and Cohen but which never became law. It held that a finding of disability could be made without requiring that the claimant produce medical evidence of an impairment. The court rejected this standard, noting that it had not been accepted by congress, the Secretary of Health and Human Services, or the circuit courts. The second standard was first presented by the court in Cotton v Boluen , 729 F2d 1403, 1407 (9th Cir 1986) and is known as the Cotton Standard . It requires "the claimant to produce medical evidence of an underlying impairment which is reasonably likely to be the cause of the alleged pain. When this evidence is produced, the Cotton standard does not require medical findings that support the severity of the pain and, thus, the adjudicator may not discredit the claimant's allegations of the severity of pain solely on the ground that the allegations are unsupported by objective medical evidence." The court does not make a distinction between disease and syndrome or causation and association. The third standard, known as the Bates standard (Bates v Sullivan , 894 F2d 1059 [9th Cir 1990]) required not only objective medical evidence of the impairment, but also corroborating medical evidence of the severity of the alleged pain. The ninth Circuit in Bunnell rejected the Bates standard.

In supporting the Cotton standard, the court cited Social Security Ruling 88-13 as a guide to the determination of the credibility of the claimant's allegations of disabling pain. This ruling states that the factors to be considered in evaluating allegations of disabling pain are:

1. The nature, location, onset, duration, frequency, radiation, and intensity of any pain;
2. Precipitating and aggravating factors (e.g., movement, activity, environmental conditions);
3. Type, dosage, effectiveness, and adverse side-effects of any pain medication;
4. Treatment, other than medication, for the relief of pain; Functional restrictions; and
5. The claimant's daily activities.

Among the points acknowledged by the court, as noted previously, is the restatement that "Pain is a completely subjective phenomenon and cannot be completely verified or measured. Moreover, the level of pain caused by an impairment varies significantly according to the pain threshold and stamina of the individual victim." They cited as additional support for their decision the 1983 second Circuit decision that held "The pain need not be corroborated by objective medical finding, but some medical impairment must be medically ascertained . . . " In a corollary decision, the eighth Circuit Court of Appeals reversed a decision of the Railroad Retirement Board because it failed to "properly consider the claimant's subjective complaints of pain" (Teague v Railroad Retirement Bd ., 982 F2d 303 [8th Cir 1992]).

A diagnosis of fibromyalgia, in conformity with the American College of Rheumatology 1990 criteria, ^4l per se is sufficient "medical evidence of an underlying impairment which is reasonably likely to be the cause of the alleged pain." The label fibromyalgia is insufficient. In addition, the Cotton/Bunnell standard as incorporated in 20 CFR §404, 1529, is an expression of national policy. The burden in the determination of disability shifts to sources other than or in addition to the physician, where medical and nonmedical evidence of the severity of pain and other vocational factors cited previously are considered. Nonmedical sources can play a very important role in the disability process because they can document the usual daily activities of the claimant, including activities such as working, recreation, shopping, travel, housework, and self care. Daily activities are a representative window into sustained work function and veracity.

One can summarize current thinking as follows. Fibromyalgia is a threshold diagnosis for the consideration of work disability. Subjective complaints of pain must be considered. Nonmedical evidence as well as medical evidence should be considered. Court decisions generally do not consider issues of reliability and validity of medical assessments in the medical or scientific sense. Courts must trust physician assessments and use them as basic evidence because neither attorney nor judge are licensed to practice medicine; and medical facts are weighed against credibility and consistency.

PROBLEMS IN DIAGNOSIS AND ASSESSMENT OF FIBROMYALGIA IN THE DISABILITY AND COMPENSATION SETTING

Is the Diagnosis of Fibromyalgia Valid and Reliable?

In general, fibromyalgia has enough general acceptance that it is no longer an issue as to whether it is a "medical condition" or "a medical impairment that results from anatomical, physiological, or psychological abnormalities." Although the diagnosis of fibromyalgia in the past generally was made on the basis of a physician's assertion, current legal opinion suggests that formal criteria (or a representation of such criteria) be used for diagnosis. This usually means that the American College of Rheumatology criteria be used41 or a complete description of tender points and symptoms of fibromyalgia be substituted. One major problem with fibromyalgia diagnosis is that the criteria were developed and validated in the clinic. Such criteria have not been tested for validity or reliability in the medicolegal setting, and it is likely that validity and reliability are less in that setting. If the physician follows a patient with fibromyalgia for a number of years, such a diagnosis when applied to a medicolegal setting is likely to be as valid and reliable as in the clinic. But a common problem arises when a new patient develops fibromyalgia and is involved in medicolegal contention, or when the physician is called on to diagnose fibromyalgia in substantiation of a disability claim following trauma. In such situations, validity and reliability can be an issue and

the physician cannot always say whether fibromyalgia exists (Table 2).

Whereas it matters littleif the diagnosis is incorrect in the clinic, having or not having fibromyalgia in the medicolegal setting may result in gaining or losing compensation benefits. For nonspecific symptoms, being diagnosed as having fibromyalgia turns such symptoms in "a medical condition" that "results from anatomical, physiological, or psychological abnormalities."

Table 2. WORK DISABILITY-RELATED FIBROMYALGIA QUESTIONS

Therefore, the patient or claimant's answering "yes" as to whether the examined sites are painful can be supportive of the claimant's application. As fibromyalgia becomes more known, the validity and reliability of the tender point examination will be further called into question. The determination of whether a tender point is painful or not is purely subjective. Efforts have been made to use control points, examination areas that are usually nontender, to differentiate between patients who have fibromyalgia and those who are tender everywhere, with the notion that if one is tender everywhere then one has more than just fibromyalgia. It is recognized, however, that many patients with low pain thresholds have pain on palpation in the control regions. To date, no methodology to separate true fibromyalgia from false fibromyalgia or from pain all over has been worked out. The use of dolorimetry (algometry) has been suggested as being more reliable and less open to manipulation then the tender point count. But dolorimetry, including the use of active and control points, similarly has not been studied in the medicolegal setting.

There are additional problems regarding fibromyalgia diagnosis in the disability context. It is well recognized that a patient may have most of the symptoms of fibromyalgia, but may have less tender points than are now required for diagnosis. Rheumatologists generally consider that such a patient should be considered as having fibromyalgia42 and diagnostic criteria have been suggested.33 Recently, two studies have suggested that the signs (tender points) and the symptoms of fibromyalgia may exist as a continuum in the population. ^7,40 Therefore the artificial division between those who have fibromyalgia and those who do not have it cannot easily be justified.

This problem--that some persons who do not have fibromyalgia satisfy criteria and seem to have fibromyalgia on the basis of reported tenderness, whereas others with fibromyalgia fail to satisfy the criteria, together with the likelihood that fibromyalgia represents one end of a symptoms-tenderness continuum--may perhaps be solved intellectually, as it concerns work disability by suggesting that the diagnosis, emphasized in the medicolegal setting, is unimportant and that work disability should be adjudicated without regard to diagnosis. A similar view was cited in Tsarelka v Secretary of Health and Human Services , 842 F2d 529 (1st Cir 1988): "Although the council was uncertain that fibrositis is a recognized disease, it emphasized that the nomenclature used to diagnose a condition is immaterial to the finding of disability." In fact, a great deal of litigation could be eliminated if fibromyalgia was left to the clinic and the symptoms and consequences of chronic pain syndromes (of which fibromyalgia is one) were considered in the disability and compensation setting. The regulations noted previously do, in fact, provide a basis for national uniformity for assessing pain syndromes.

Is the Assessment of Functional and Work Disability Reliable and Valid?

Physician Assessments. To the physician in the clinic fibromyalgia is disabling when pain or fatigue is severe and intrusive and is not substantially ameliorated by treatment. As with chronic pain syndromes in general, disability is added to by psychological and social factors. The appearance of work disability is vitiated when psychological factors appear predominant or when the pain or fatigue appears to be less severe than stated. Even though it is well known that one cannot feel the pain (or fatigue) of another individual, there is some data available to make one question ex cathedra claims of pain and disability. Hidding et al16 studied 25 patients with ankylosing spondylitis, 12 with rheumatoid arthritis, and 13 with fibromyalgia. Patients completed a functional questionnaire and 5 days later the 50 patients and four normal controls performed functional activities while being recorded on videotape. The authors reported that "discordance between self-report questionnaires and observed functional disability is a feature most striking in fibromyalgia." A second reason to be concerned with fibromyalgia severity is that patients with fibromyalgia report higher levels of pain than do persons with severe rheumatoid arthritis and other rheumatic disorders. ¹⁴ Finally, there is more psychological disturbance ^15,24,40 and disturbance in social relationships ¹⁵ in persons with fibromyalgia than in other rheumatic conditions.

We wish it understood that we are not suggesting that persons alleging disability for fibromyalgia are or are not disabled, but are instead suggesting factors and data that might influence a physician's perception. An acknowledged but generally unspoken fact regarding physicians and disability is that if the physician believes that the patientis disabled, he or she writes a strong report in support of the disability claim, but if he or she is not certain or does not believe the patient is disabled, the report usually is descriptive rather than advocative. The physician's report has great importance because the SSA gives special weight to the report of the patient's physician (Bunnell v Sullivan , Cooper v Sec HHS F2d 1317 [8th Circuit 1990]).

Can the physician tell if the patient is disabled? Usually not. As suggested previously, the decreased validity of conventional assessment measures together with the inherent subjective nature of the pain and fatigue complaint make it difficult for the physician to understand the true work disability state. In addition, it is not clear how the physician should integrate psychological factors into his or her assessment of work disability. Consider patients whose physical disability represents 50% to 80% of their total disability, but in whom psychological factors account for 20% to 50%. If the patients were not so anxious or depressed would they be disabled? Should the physician's perception of disability take into account psychological factors? There is no clear answer to these questions accept to indicate that review of medical and court records indicates that different physicians respond differently. But there are certain circumstances when the physician's observations may be more reliable and valid. Wolfe ³⁵ has written that "There are certain circumstances in which the clinical data is sufficient for the physician to actively support a work disability claim. In most instances this is the case when longitudinal observations exist to document physical difficulties. In some of our patients, for example, we have found that repeated measurements with the CLINHAQ ³⁴ allow us to document a consistent pattern of difficulty over a period of years. We are then able to address chronicity and severity."

SSA Assessments. There have been no formal studies of this issue in fibromyalgia. It is clear from studies of SSD in low back pain and similar disorders that the evaluation process has many problems. ^11,12 We reviewed a series of court decisions of appeals from decisions of the ALJs regarding SSD. Because it was not possible to obtain medical records we were unable to state whether the judgments of the courts appeared medically correct. Even so, it became clear that patients claiming SSD for the same medical condition had different outcomes according to ALJ, court, or jurisdiction. Patients generally succeeded in their applications when there were reports from physicians affirmatively documenting the factors to be considered in evaluating allegations of disabling pain, regardless of the scientific reliability of the documentation. As noted previously, courts give special weight to the reports of treating physicians. When fibromyalgia is but one of a long list of diagnoses, however, courts uniformly uphold lower courts' decisions not to pay benefits.

Additionally, we were persuaded that it was the detail of physician's reports that influenced court decisions. In a number of instances, reading between the lines, one of us (FW) felt that there was ample suggestion by many physicians that the patient was not disabled, but that the formal reports, documented with patient self report, often influenced the disability award in the other direction. But SSD is an amalgam of disease, limitation, age, and work; and physicians frequently have little experience in vocational evaluation and adaptation. Physician philosophy as well as that of the adjudicators also seems important. Adjudication problems are difficult in disorders primarily manifested by pain, but in illnesses such as rheumatoid arthritis where there are physical, laboratory, and radiographic markers of disease severity the adjudication process works well. ¹⁸

WHAT TO DO: A PRACTICAL MANUAL

A Practical Definition of Work Disability. The authors find this definition by one of us (JP) as it applies to fibromyalgia to be useful. Three pillars of each and every employer-employee relationship (work) are: (1) regular and consistent work hours and attendance; (2) accurate and complete work; and (3) the ability to respond appropriately to supervision, criticism, and the general public. Where the sequelae of fibromyalgia significantly erode all of the three pillars of employment, disability should be judicially determined. Thus, when the clinical manifestation of fibromyalgia convincingly demonstrates five or more days per month at random when pain is intrusive and overwhelming, when symptomatology renders the patients emotionally labile, and when fatigue significantly impairs functioning so that attendance at work is not possible, a finding of disability by the commissioner should obtain. A finding of disability does not predispose that on each and every day the patient is unable to meet the minimum demands of the work place; rather, it exists if the patient is too ill too often to allow for work continuity and productivity. The focus therefore shifts to work capacity.

Is There a Conflict of Interest? In the disability process the physician has a dual role. As physician, his or her job is to improve the outcomes of the patient's illness syndrome, outcomes that not only include clinical measures, such as pain and function, but outcomes that extend to psychosocial and economic issues as well. In doing so the physician may feel strongly that the patient can and should work, and would be better off working, whereas the patient may believe the opposite (the contrary can occur). In the physician-patient dialog such disagreements occur and are not harmful and often are helpful. If, however, the patient files a disability application--whether for SSD, workers' compensation, or job related disability--the physician's role changes, at least somewhat. In the changed setting the patient asks the physician to become his or her advocate in the disability process and to support his or her application. In addition, society asks for accurate reporting on the patient's condition and capacity. A conflict of interest may occur, because the insurer's or society's interests may differ from the patient's or the physician's. It is not always possible to solve this conundrum. An objective report, as described later, goes part way.

How to Prepare a Disability Report for a Patient with Fibromyalgia

The patient and the system are well served when the physician prepares a comprehensive narrative report about what is known. It is important to distinguish between what is the patient's self report and what are the physicians' observations. But these suggestions do not preclude the physician from expressing his or her judgment about the data and his or her conclusions.

Diagnosis. Establish that the diagnosis is present. Cite the historical and physical findings that support the diagnosis. Use the 1990 American College of Rheumatology criteria for the classification of fibromyalgia.41 Often many other specialists are involved. Confusion may arise because the patient may have been diagnosed by others with disc syndromes, osteoarthritis, rheumatoid arthritis, carpal tunnel syndrome, thoracic outlet syndrome, systemic lupus erythematosus, and so forth. Explain how the these disorders can be confused with fibromyalgia and insist on the diagnosis of fibromyalgia. Diagnostic criteria are helpful because, in our experience, most other alternative diagnoses are made on the basis of assertion.

Clinical Measures of Severity. Describe the severity of the syndrome. The tender point count, pain diagram, pain and severity scores, and psychological and functional disability data are essential. There are normative data for these measures in fibromyalgia and other rheumatic conditions. Citing these data in relationship to your patient helps to put into prospective your patient's plight and status. If you have longitudinal data, they may be very helpful in assessment and they should be given.

Response to Therapy. Adjudicators are interested in whether the patient responded to prescribed therapy and whether the patient was fully compliant with therapeutic suggestions. This implies that you should document past therapeutic results as well as the response to treatments you may have suggested.

Current Activities. Describe the usual daily activities of the claimant, including activities such as working, recreation, shopping, travel, housework, and self care.

Work Capacity. Using the practical definition of disability, describe the number of days per month when pain is intrusive and overwhelming, when symptomatology renders the patient emotionally labile, and when fatigue significantly impairs functioning.

Relationship to Previous Injury. If there is an alleged injury, describe the pattern of the development of fibromyalgia after the injury and whether it seems representative. It is often useful to note whether the fibromyalgia seemed to arise de novo in an otherwise healthy individual.

Is the Patient Disabled? In reports for SSD this question is not asked (only the data regarding functional and work ability are requested), but most other agencies ask the question. As in any medical disorder there are instances when the physician can clearly answer that the patient is or is not disabled. But often the physician cannot answer the question in a valid and reliable manner, or even answer it all. One approach is to indicate that only the patient feels his or her pain, and that it would be difficult to do certain tasks if there were such pain. One can indicate, as well, that most patients with fibromyalgia are able to work provided the job does not place undoable physical demands on them. Studies can be cited, such as the Cathey et a1 study, which showed that 30% of patients changed jobs because of fibromyalgia but that most patients were able to work.

As we have written previously, "There are circumstances when the physician is asked not for data and interpretation, but only whether the patient is partially or completely work disabled, when the disability began, and when it will end." Such " . . . questions usually are part of an insurance form and are the result of a medical or a work disability claim that the patient has initiated. The physician is forced to complete this form, for if he does not or if he says that he does not know the answers to the question, the patient will be injured by default. While there are clearly cases in which work disability does and does not exist, in most instances there is not a scientific, medical way to answer the questions. We suggest the physician substitute compassion and intelligence for medical truth in these circumstances." ³⁵

THE RATE OF DISABILITY PAYMENTS FOR PATIENTS WITH FIBROMYALGIA

There are scant data available concerning work disability from official sources because most official databases do not count fibromyalgia as a separate category. Table 3 describes disability payment data derived from one insurance survey and several clinical surveys.

McCann et al ²² reported data from a Canadian life insurance company, London Life, using a representative sample. A file review indicated that fibromyalgia was responsible for 9% of long-term disability cases. Bengtsson et all reported that 24% of Swedish patient were receiving disability pensions because of fibromyalgia. Cathey et al ⁵ described 81 patients from Wichita in 1985. They indicated that 6.3% reported being disabled. In a further report in 1988 from the same center, of 176 patients surveyed, ⁴ 9.3% reported being disabled, whereas 5.7% were receiving disability payments; and 30.4% reported having to change jobs because of their illness, and 17% retired because of fibromyalgia. Of interest, among the group receiving disability payments, no patients directly received payments because of fibromyalgia. Causes included low back pain and systemic lupus erythematosus (incorrect diagnosis). In part this was because fibromyalgia was not yet a known diagnosis, but also because general pain disorders were not generally compensable.

The disability payment status of fibromyalgia patients was also studied by Mason et al. ²¹ They indicated that 22% of 73 patients with fibromyalgia reported being disabled, and 33% changed jobs because of the illness.

Wolfe et al ³⁹ studied the work disability status of 1668 fibromyalgia patients from seven centers. Overall, 25.3% of patients had received some form of disability payment, including 14.8% from SSD, 4% from workers' compensation, 7.4% from employment, and 4.4% from public assistance (Welfare). These data indicate that a substantial proportion of patients with fibromyalgia have received disability benefits under the various insurance companies.

DOES TRAUMA CAUSE FIBROMYALGIA?

A number of reports have dealt with fibromyalgia developing in the work disability or compensation setting.* Although almost no data are available on the issue of causal relationships between work or trauma and fibromyalgia, the association between work disability or compensation and fibromyalgia is well established. A recent fibromyalgia consensus report ⁴² on disability stated:

Table 3. WORK DISABILITY IN FlBROMYALGiA

*References 2, 3, 6, 8,19, 20, 22, 23, 25, 27-29, 32, 35, 36

The clinical dilemma, whether an injury or work place stress caused the patient's fibromyalgia, a 'retrodictive (or It Did) causal proposition,' ¹⁷ can rarely be determined to be certainly true or certainly false." Evidence that trauma can cause fibromyalgia, a 'potential (or It Can) casual proposition' , ¹⁷ comes from a few case series or case reports, ^8,23,28,29 and is insufficient to establish causal relationships. That trauma might cause fibromyalgia sometimes , a 'predictive (or It Will) causal proposition,' ¹⁷ can only be addressed by epidemiological studies which measure the risk of potential exposures on the development of fibromyalgia. Epidemiologic studies of trauma and fibromyalgia needed to address potential or predictive causality are currently not available. The fibromyalgia causality issue, as in other putative work and injury related syndromes, may be further complicated by the potential influence of the availability of compensation for the syndrome. In settings where compensation is widely available illnesses similar to fibromyalgia have been shown to increase in apparent prevalence, as measured by physician visits, then to fall when compensation availability.

Overall, then, data from the literature are insufficient to indicate whether causal relationships exist between trauma and fibromyalgia. The absence of evidence, however, does not mean that causality does not exist, but instead that appropriate studies have not been performed.

The issue of causality is at the base of the myriad of workers' compensation and automobile accident claims concerning fibromyalgia. These issues are not different from those addressed by Hadler ^{9,10,12 13} concerning low back pain and upper extremity problems and they remain unresolved.

*This discussion follows the outline of Bunnell v Sullivan , 947 F 2d 341 (9th Cir 1991)

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Frederick Wolfe, MD
Arthritis Research and Clinical Centers
1035 North Emporia, Suite 230
Wichita, KS 67214
FWOLFE@SOUITIWIND.NET