Fibromyalgia and Chronic Fatigue Syndrome
This article is largely based on the excellent work of Muhammad B. Yunus, MD, FACP, FACR, FRCPE Section of Rheumatology University of Illinois College of Medicine at Peoria and his article :A comprehensive medical evaluation of patients with fibromyalgia syndrome Rheumatic Diseases Clinics of North America Volume 28 • Number 2 • May 2002
and Nelson M. Gantz in Noble: Textbook of Primary Care Medicine, 3rd ed., Copyright © 2001 Mosby, Inc.
The legal discussion was excerpted from “Wilborn,s social security disability advocate’s handbook ( James publishing)
Fibromyalgia syndrome (FMS) is a common and distressful condition with multiple multiple facets. FMS patients can be subclassified into five groups based on their clinical presentations:
• Predominant pain and fatigue;
• Predominant anxiety, stress, and depression;
• Predominant multiple sites of pain complaints and tender points (TP);
• Predominant numbness and swollen feeling;
• Associated features, that is, irritable bowel syndrome and headaches .
Fatigue is the hallmark of the chronic fatigue syndrome (CFS); fatigue must be new, persistent, or relapsing and associated with a 50% reduction in a patient’s premorbid activity for at least 6 months. In the mid-1980s, reports erroneously linked CFS to Epstein-Barr virus (EBV), and CFS continues to be controversial.
Fibromyalgia is a similar disorder of widespread musculoskeletal pain and fatigue with other symptoms, such as poor sleep. CFS and fibromyalgia are overlapping disorders; about 75% of patients with CFS also meet the criteria for fibromyalgia, and vice versa. The onset of CFS is often acute after an infectious illness, typically viral, whereas the onset is often gradual with fibromyalgia.
The cause of CFS and fibromyalgia is unknown. Patients with fibromyalgia report either a gradual onset of their disorder or an “event,” such as a flulike illness or physical trauma. Patients with CFS often recall the onset after an acute viral illness.
The cardinal symptom of CFS is fatigue. The fatigue of CFS refers to a state of profound mental and physical exhaustion that cannot be explained by ongoing exertion or activities. The fatigue also is disproportionately exacerbated by activity and is not ameliorated by rest. Other characteristic symptoms of CFS include self-perceived impairments of short-term memory and concentration, sleep problems, muscle and joint pain headache, dizziness, allergic symptoms, and depression
In 1990 the American College of Rheumatology outlined guidelines for diagnosing fibromyalgia by requiring that widespread pain be present for 3 months or more. Widespread pain refers to pain involving both sides of the body and above and below the waist. In addition, to fulfill the diagnostic criteria, pain must be present in 11 or more of 18 specified tender points on digital palpation (see fig,1 ). Other symptoms and signs include sleep problems, fatigue, stiffness, and cold intolerance.
The CDC case definition is currently the most accepted basis for diagnosing CFS, A patient must have unexplained persistent fatigue for 6 months that is new and not caused by exertion,
1. Clinically evaluated, unexplained, persistent, or relapsing fatigue for at least 6 months that:
Is of new or definite onset,
Is not the result of ongoing exertion,
Is not substantially alleviated by rest, and Results in substantial reduction in previous levels of activities.
Is not relieved by rest, and results in a substantial reduction in previous levels of activity.
2. Four or more of the following concurrent symptoms on a persistent or recurrent basis during 6 or more consecutive months of illness, none of which may predate the fatigue:
Self-reported impairment in short-term memory or concentration that is severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities previous levels of occupational, educational, social, or personal activities
Tender cervical or axillary lymph nodes
Multijoint pain without joint swelling or redness
Headaches of a new type, pattern, or severity
Postexertional malaise lasting more than 24 hours
The diagnosis of CFS is difficult and remains one of exclusion. No laboratory test can confirm the diagnosis; routine laboratory tests are normal, and the erythrocyte sedimentation rate is not elevated. Similarly, antinuclear antibody or rheumatoid factor testing should be ordered only if the patient has joint complaints. Selected immunologic tests may be abnormal in patients with CFS but are indicated only for research purposes. Although symptoms of the so-called yeast connection or Candida hypersensitivity syndrome overlap those of CFS, no evidence indicates that the “yeast syndrome” exists, and testing for Candida antibodies is not indicated.
Cortisol excretion is decreased in CFS patients compared with controls. This may result from a deficiency of corticotropin-releasing hormone (CRH) or another stimulus of the pituitary-adrenal axis. In contrast to patients with CFS, cortisol secretion may be increased in patients with primary depression.
CFS has been associated with neurally mediated low blood pressure .In one study 30% to 89% of patients with CFS dropped their blood pressure when placed on a a tilt table and responded to salt loading, fludrocortisone, beta-adrenergic blockers, and disopyramide.
Magnetic resonance imaging (MRI) brain scans may show multiple foci of high signal intensity in the white matter in patients with CFS compared with controls. The meaning of these findings is unknown, and an MRI brain scan is not useful as a diagnostic test.
Patients complain of multiple cognitive defects, but various neuropsychologic tests have not been of value in documenting these abnormalities. Although fatigue is a hallmark of CFS, no myopathy has been identified. Similarly, patients often complain of weakness but on testing demonstrate normal muscle strength.
Roizenblatt et al. reported that FMS patients with phasic alpha sleep reported significantly more pain and more tender points following their disturbed sleep. Yunus et al showed that poor sleep is significantly (P = 0.01 or less) correlated with all important fibromyalgia features, e.g., pain, number of pain sites, fatigue, global severity, functional status by Health Assessment Questionnaire (HAQ), as well as anxiety, depression, and stress (as measured by validated questionnaires). Interestingly, number of TP was not significantly correlated
Widespread pain and multiple tender points are characteristic of fibromyalgia, but again, no diagnostic laboratory test exists. Patients with fibromyalgia sleep poorly, and sleep abnormalities have been identified on electroencephalograms; however, these findings are not specific for fibromyalgia.
Neuroendocrine abnormalities, such as reduced excretion of urinary free cortisol and decreased levels of insulin growth were reported
Many patients with FM complain of cognitive difficulties. A recent study has shown poorer working memory, word groping, and poorer vocabulary in FMS as compared with age matched controls. While no appropriate studies have been published, these symptoms may be contributed by poor sleep, fatigue, psychologic factors, and medications among clinic patients.
Originally observed by Yunus , it is now well accepted that there are many similar conditions that overlap with FMS. The expanding list of these conditions, which occur more frequently in FMS than control groups, include irritable bowel syndrome (IBS), tension-type headaches, migraine, temporomandibular dysfunction (TMD), myofascial pain syndrome, chronic fatigue syndrome, restless legs syndrome (RLS), multiple chemical sensitivity, and post-traumatic stress disorder (PTSD), among others. One third of FMS patients have ( restless legs syndrome ) RLS . RLS is characterized by an unpleasant sensation in the legs, feet, or sometimes in the thigh, often described as “insects crawling,” “worms writhing,” or tingling or numbness. The fundamental characteristic of RLS is that it occurs at rest (while in bed, prolonged sitting) and relieved by movement, unlike the paresthesia of peripheral neuritis, which does not have this definite pattern.
CFS and fibromyalgia are chronic illnesses in which the course waxes and wanes. The objectives of therapy are to educate the patient, provide symptomatic relief, and preserve or improve functional ability. Patient support groups can play an important role. Treatment can be divided into nonpharmacologic approaches (e.g., physical therapy, exercise, counseling, cognitive behavior therapy [CBT]) and pharmacologic therapy Pharmacologic therapies treat symptoms such as depression, anxiety, sleep problems, allergies, and muscle and joint pains. Antiviral drugs (e.g., acyclovir, corticosteroids,
immunoglobulins) have no role. Some patients have hypotension on tilt table testing and may benefit from salt loading, fludrocortisone, or beta-adrenergic blockers.
Since no specific therapy exists for CFS and fibromyalgia, emotional support is critical. Patients should be followed to continue to exclude other medical problems. In more than half of patients, symptoms persist for years.
Triggering, aggravating, and relieving factors
Although most patients with FMS describe an insidious onset of their symptoms, sometimes dating back in childhood, a significant minority (25–30%) state that their fibromyalgia was triggered by a certain event, for example, trauma, infection (mostly viral), surgery, another medical illness , or mental stress . Most patients report that their symptoms are aggravated by cold and humid weather, winter months, poor sleep, repetitive or other forms of physical injury, mental stress, and physical inactivity, and are improved by warm and dry weather, warm months, rest, moderate physical activity, good sleep, rest, and relaxation.
As is the case with history taking, physical examination of a patient suspected to have FMS from symptoms should be “fibromyalgia focused” that is, examination for tender point elicitation with additional examination for concomitant or associated conditions If postural hypotension is suggested by history, blood pressure should be taken in recumbent and standing position, followed by a tilt table test , if necessary. A drop in systolic blood pressure of >25 mm Hg, a failure to increase heart rate, or development of syncope may be taken to be a positive tilt test . .
The most important physical examination for a diagnosis of FMS is to systematically palpate (with an approximate force of 4 kg) the 18 sites suggested by the American College of Rheumatology (ACR) criteria as shown in:
• Bilateral occiput (at the suboccipital muscle insertion);
• Bilateral low cervical (at the anterior aspect of the intertransverse spaces between C5–7);
• Bilateral trapezius (mid-point of the upper border);
• Bilateral supraspinatus (origin of this muscle above the scapular spine near the border);
• Bilateral second rib (just lateral to the costochondral junctions on upper surface);
• Bilateral lateral epicondyle (2 cm distal to the epicondyle);
• Bilateral gluteal (at the upper outer quadrant of the buttock);
• Bilateral greater trochanter (posterior to the trochanteric);
• Bilateral knee (medial fat pad proximal to the joint line).
Diagnosis and differential diagnosis
It needs to be emphasized that FMS is not a disease or illness of exclusion, and should be diagnosed by its own characteristics. American College of Rheumatology criteria have two components:
1. Widespread pain for at least three months (pain in the left side of the body, plus right side of the body, plus pain above the waist, plus pain below the waist, plus axial pain; axial pain includes pain in the cervical spine, or thoracic pain, or low back, or anterior chest wall).
2. Presence of 11 TP among 18 specified sites as has been described above.
The presence of a second condition does not exclude a diagnosis of FMS .
Laboratory and radiological evaluation
The emphatic statement with regard to “lab testing” is that no particular test is necessary to rule in or rule out fibromyalgia, which essentially should be diagnosed by its own clinical characteristics as described above.
No special laboratory or radiologic testing is necessary for making a diagnosis of FMS; routine testing for rheumatoid factor or antinuclear antibodies is not recommended.
Routine complete blood count, BUN, creatinine, liver enzymes, serum calcium
Serum T4, TSH
Sleep study if clinically indicated (see text)
Blood and/or radiologic tests for concomitant conditions, if clinically indicated by history and/or examination.
ESTABLISHING DISABILITY STATUS IN FM AND CFS
42 U.S.C. § 423(d)4 defines “disability as “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 which has lasted or can be expected to last for a continuous period of not less than 12 months… For purposes of this subsection, 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 diagnostic techniques.
To emphasize the importance of signs and findings in the disability determination, 42 U.S.C. § 423(d)(5)(A) provides that “[a]n individual’s statement 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,5 established by medically acceptable clinical or laboratory diagnostic techniques, which show the existence of a medical impairment that results from anatomical, physiological, or psychological abnormalities.”
The Social Security Administration interpretation of the statute contained in SSR-96-4p reinforces this instruction. Although the Act and SSR 96-4p provide that a “symptom” is not a “medically determinable physical or mental impairment,” footnote #2 of SSR 96-4p describes the following circumstances under which what otherwise might be considered to be a “symptom” is really a medical “sign”:
20 CFR 404.1528, 404.1529, 416.928, and 416.929 provide that symptoms, such as pain, fatigue, shortness of breath, weakness or nervousness, are an individual’s own perception or description of the impact of his or her physical or mental impairment. However, when any of these manifestations is an anatomical, physiological, or psychological abnormality that can be shown by medically acceptable clinical diagnostic techniques, it represents a medical “sign” rather than a “symptom.”
SSR 96-2p completes the proof with the following definition of the statutory term of art, “medically acceptable”:
Medically acceptable. This term means that the clinical and laboratory diagnostic techniques that the medical source uses are in accordance with the medical standards that are generally accepted within the medical community as the appropriate techniques to establish the existence and severity of an impairment.
The medical standards that are generally accepted within the medical community as the appropriate techniques for establishing the existence and severity of fibromyalgia and chronic fatigue syndrome are detailed in various medical publications. See, for example, Wolfe, F. et. al.: The American College Of Rheumatology 1990 Criteria For The Classification Of Fibromyalgia: Report Of The Multicenter Criteria Committee. Arthritis & Rheumatology (1990) 33:160-72. See also the December 1994 revised working case definition of CFS established by the Centers for Disease Control: Fukuda, et.al. “The Chronic Fatigue Syndrome: A Comprehensive Approach to its Definition and Study,” Annals of Internal Medicine, (1994) 121:953-59.
In a claim involving allegations of disability based in whole or in part on FM or CFS, it is the responsibility of the claimant’s representative to ensure that the claimant’s treating and/or examining physicians are aware of, and employ, the techniques for establishing the existence and severity of fibromyalgia and chronic fatigue syndrome as set out in the above-referenced medical articles and SSR 99-2p.
NINTH CIRCUIT PRECEDENTS
The Ninth circuit is the highest federal Court in the western states and its holdings control federal court decisions in Arizona. In Day v. Weinberger, 522 F.2d 1154 (9th Cir. 1975), the Ninth Circuit addressed the fact that disability may be proved by medically-acceptable clinical techniques.
, “in concluding that Day was not disabled, as “disability” is defined in 42 U.S.C. § 423(d), the Hearing Examiner relied on three other factors. First, he noted that none of Day’s medical experts had been able, through the use of objective diagnostic techniques, to identify specific cause for Day’s alleged pain. Second, the examiner noted that during Day’s appearance at the hearing, she did not exhibit the physical manifestations of prolonged pain that are listed in a leading medical textbook. Finally, the examiner relied on his own observations of Day at the hearing and certain of Day’s own testimony in concluding that she remained capable of doing light work.
The first two factors upon which the examiner relied provide little, if any, support for his ultimate conclusion. Disability may be proved by medically-acceptable clinical diagnoses, as well as by objective laboratory findings. 42 U.S.C. § 423(d)(3); see Stark v. Weinberger, 497 F.2d 1092, 1097 (7th Cir., 1974); Flake v. Gardner, 399 F.2d 532, 540-41 (9th Cir., 1968). And the Hearing Examiner, who was not qualified as a medical expert, should not have gone outside the record to medical textbooks for the purpose of making his own exploration and assessment as to claimant’s physical condition. Williams v. Richardson, 458 F.2d 991, 992 (5th Cir. 1972).”
For three cases within the Ninth Circuit addressing FM and CFS see Reddick v. Chater, 157 F.3d 715 (9th Cir. 1998); Bunnell v. Sullivan, 947 F.2d 341 (9th Cir. 1991); and Irwin v. Shalala, 840 F.Supp. 751 (D.Or. 1993).
In May 11 1998 Deputy Commissioner for Disability and Income Security Programs, Susan Daniels, wrote a memoranda to an ALJ who argued that the symptoms of FM should not be considered medically acceptable clinical and laboratory diagnostic techniques in support of the claimant’s application for disability determination:
“Your letter states that fibromyalgia and CFS do not constitute medically determinable impairments within the meaning of section 223(d)(3) of the Social Security Act because there are no acceptable medical criteria by which these impairments can be diagnosed…. However, SSA has taken a definitive position that fibromyalgia and CFS can constitute medically determinable impairments within the meaning of the statute. As you noted in your letter, CFS was discussed in the process unification training in 1996-1997…This position is consistent with the instructions in Program Operations Manual System (POMS) DI 24515.075, Disability Digest No. 93-5, and Social Security Rulings (SSRs) 96-3p, 96-4p, and 96-7p, issued on July 2, 1996, which detail our policies as to how symptoms affect determinations of the presence of a medically determinable impairment, impairment severity, and the ability to engage in sustained work activity.
Establishing the existence of a medically determinable impairment does not necessarily require that the claimant or the medical evidence establish a specific diagnosis. This is especially true when the medical community has not reached agreement on a single set of diagnostic criteria. ..Your argument based on the Rulings seems to misinterpret the explanation in Footnote 2 to SSR 96-4p, which explains our longstanding policy, consistent with 20 CFR §§ 404.1528(b) and 416.928(b), that some symptoms, when appropriately reported by a physician or psychologist in a clinical setting, can also be considered “signs” because sometimes these observations constitute “medically acceptable clinical diagnostic techniques.” This is true for mental impairments in general and for such widely recognizable disorders as migraine headaches”
FM and CFS are “real diseases” which lead to disability. The key to winning in front an ALJ is to have the physician meticulously follow the guidelines established by the American College Of Rheumatology 1990 Criteria For The Classification Of Fibromyalgia: Report Of The Multicenter Criteria Committee. Arthritis & Rheumatology (1990) 33:160-72. Thorough notes and commitment of the treating physician to assist the claimant in her quest for disability determination are of paramount importance