Pinals, Robert S. MD
Fibromyalgia (FM) emerged as a common, chronic condition causing widespread pain in the late 20th century. Most patients are women with a lowered pain threshold, resulting in generalized tenderness, which is particularly impressive in the 18 points used for classification by the American College of Rheumatology criteria.1 In addition, there are frequent associated problems including sleep disorders, chronic fatigue, irritable bowel syndrome, cognitive impairment, headaches, and psychiatric comorbidities, such as anxiety and depression.2 FM was identified early in the 20th century as a relatively uncommon condition, “fibrositis,” but there is scant evidence supporting its prior existence. This report describes a woman who appeared to have FM during the last third of the 19th century, the Gilded Age. Alice James was a member of a prominent family which included her older brothers, William, a seminal figure in the fields of psychology and philosophy and Henry, a novelist. Details of her illness can be found in her abundant correspondence with family and friends, and in the diary which she kept during the last 3 years of her life.3–5
The James Family
Alice was the youngest of 5 children. Her father and 4 brothers had a lifelong obsession with chronic and recurrent health problems including depression, headaches, back pain, constipation, and dyspepsia.6,7 William and Henry had gout and angina. Her father, self-styled philosopher, and her youngest brother were chronic alcoholics. Despite a sizeable inheritance, the family led an unsettled life, moving about frequently, including European tours, in a quest for “cures” for health problems, educational opportunities, and new experiences. Consequently, the children developed close relationships within their family but few outside. The family's wandering finally ended in the fall of 1866 when they moved to Cambridge, Massachusetts where they lived for 16 years, and where William and Henry were already attending college.
On her 18th birthday, just before the move to Cambridge, Alice had onset of symptoms, which persisted for the rest of her life, with only a few brief, partial remissions. Most prominent were widespread pain, “ghastly” fatigue, insomnia, headaches, and depression. She was intolerant of exertion and refractory to all medications. She was told by physicians that she had “nervous hyperesthesia,” suggesting the presence of tenderness on palpation. Although specific details of her physical examination are unavailable, many physicians would reassure her that there were no serious abnormalities. Abdominal pain was another frequently recurrent complaint. Less common episodes included facial neuralgia, fainting spells, and leg weakness, which she described as “paralysis.”
Treatment and Subsequent Course
After several months of persistent symptoms, Alice was referred to Dr. Charles Taylor, who had recently established an Orthopedic Dispensary in New York City. He kept a number of rooms in his own home next door for the inpatient care of his private patients, who were mainly women with “nervous disorders.” Taylor had published a book entitled “Theory and Practice of the Movement Cure” in which he proposed that education of women and excessive reading by them caused overstimulation of their nervous systems, thus depriving the muscles of energy and nutrition.8 He coined the term “a bundle of nerves” to describe this pathologic emotional state. Taylor believed that his treatment program of massage, stretching, and passive exercise, using machines which he had invented, would restore muscle function and mitigate pain and fatigue. After 5 months, Alice had improved enough to be discharged, but she had a relapse after only 5 weeks at home.
During the next few years, there was a gradual improvement and Alice was allowed to accompany her aunt and brother Henry on a 5 month European tour in 1872. To Henry's amazement, Alice was “indefatigable,” tolerating long walks and other physical challenges.4 However, her symptoms recurred when she was displeased with the planned activities or company.
Within a few months after returning home she complained of episodic pain and exhaustion, but was able to resume the social activities which were so important for a young woman with matrimonial expectations. As she confided to a friend, marriage “was the only successful occupation a woman would undertake.”3 Although she was bright, witty, and articulate, Alice lacked the qualities which made a young woman popular in the Gilded Age. She was rather plain in appearance, was unable to make “small talk” and felt uncomfortable in the presence of men. Above all, her family fortune had dwindled alarmingly. By 1878, as Alice turned 30, many of her friends had married; when her brother William announced plans to marry a woman also named Alice, she had a severe relapse of pain, exhaustion, and depression. She was unable to attend her brother's wedding, took to her bed for several months, and spoke about suicide.3,4 When her mother died in 1882, Alice took over management of the household and care of her invalid father. Everyone marveled at her performance, but she had a complete physical and emotional collapse during his terminal illness later in the same year.
On brother William's recommendation Alice consulted a new physician in Boston, Dr. Henry H.A. Beach, a prominent surgeon at the Massachusetts General Hospital with an interest in orthopedic problems. Dr. Beach suspected an underlying cause for Alice's symptoms, and after 3 weeks of investigation concluded that “rheumatic gout” was the culprit. He suggested that “if the gout were to come out in her joints she would have no nervousness” and recommended, in the event of a future European trip, a consultation, with Dr. A. B. Garrod, England's foremost authority on gout.4
After her father's death Alice sold the Cambridge home, moved to a smaller townhouse in Boston and learned from brother William of a new approach to the treatment of hysteria and neurasthenia, both diagnoses which had been offered as explanations for her symptoms. William had read about the rest cure proposed by Dr. S. Weir Mitchell, an influential Philadelphia physician and had even met Mitchell after one of his lectures in Boston. This program was being offered at the Adams Nervine Asylum, a relatively new suburban institution for the treatment of “nervous people who are not insane.”6 The attractive mansion accommodated 30 patients, all of them women; the institution's directors and medical staff were all Boston Brahmins. Alice admitted herself eagerly for 3 months of rest and freedom from all responsibilities. A few years later, Osler described details of the “rest cure,” which he advocated as the only successful approach to hysteria.9 Treatment consisted of “isolation, rest, diet, massage, and electricity.” The patient was “confined to bed and not allowed to get up …, read, write, or even to feed herself.” The diet was limited to milk every 2 hours for the first week and “patients usually fatten rapidly as solid food is added, and with the gain, there is, as a rule, a diminution or cessation of the nervous symptoms.” The “rest cure” was designed to replenish the body's supply of “fat and blood” thought necessary to generate vital biologic energy.10,11 Osler proclaimed that “the remarkable results obtained by this method are now universally recognized,” but when brother Henry visited Alice after her discharge he found her better “but there has been no miraculous cure.”4
A few months later Alice went to New York for a 2-month course of galvanic treatments administered by Dr. William Neftel, a Russian émigré who believed that the “accumulated products of tissue metamorphosis act in deleterious manner … producing a depressing effect upon the muscular and nervous system and a feeling of exhaustion.”12 These “effete substances” could be removed from the muscles by electrical treatment and passive exercise. Alice liked the doctor whom she described as a “Russian electrician … . . who certainly, either in spite of, or because of his quackish quality has done me a good deal of good in many ways.”3 However, his exorbitant fees and the lack of sustained benefit left her disillusioned once again.
In 1884, Alice had a severe exacerbation of generalized pain and exhaustion. Scarcely able to walk, she nevertheless embarked on a trip to England, in which she planned to visit her brother Henry, and also seek consultation for her illness. She improved somewhat after arrival and was able to establish her own lodgings with a nurse and servant. An appointment with Dr. Alfred Baring Garrod, who had been recommended by her physician in Boston, had highest priority. He was an eminent clinical scientist, who had clarified the pathogenesis of gout and described rheumatoid arthritis as a disorder distinct from gout.13 Alice had been told that a gouty “diathesis” was the underlying cause of her diffuse pain and had high expectations that Garrod, the ultimate authority, could outline a path to remission. However, as she described in a letter: “My doctor turned out as usual a fiasco … . I could get nothing out of him and he slipped thro' my cramped and clinging grasp as skillfully as an eel . . . . The gout he looks upon as a small part of my trouble, it being complicated with an excessive nervous sensibility, but I could get no suggestions of any sort as to climate, baths, or diet from him . . . . I got from him, however, a very thorough examination.” She had been seeking a tangible diagnosis and comprehensive therapeutic regimen, but was back to square one.
Alice would remain in England for the last 8 years of her life. Consultations with other physicians were equally disappointing and she was treated with morphine for pain and bromides for insomnia. In 1886, she wrote to brother William: “Until lately every joint in my body was pierced with rheumatic pains flying from my head to my feet, from my stomach to my hands. How I should have lived without salicene, I didn't know.” In 1891, a mass was discovered in her breast and she wrote: “Ever since I have been ill, I have longed for some palpable disease.” Her wish was finally granted and she died of breast cancer in 1892, at the age of 44.
Alice James' illness, characterized by unexplained widespread pain, persisting throughout her adult life resembled what we now call FM. Her symptoms included many familiar FM comorbidities, such as severe fatigue, insomnia, headaches, abdominal pain, anxiety, and depression. The intensity of her symptoms and disability was often linked to stressful life events. Obsession with her illness and the vain pursuit of a cure limited her chances for a fulfilling life and for a successful literary career, which her biographers believe might have been possible.6,7 Neurasthenia and hysteria, the diagnoses most frequently offered by her physicians, were regarded as common problems during the Gilded Age, and were well described by Osler in the most popular and authoritative textbook of that era.9 More space was devoted to hysteria than to all forms of arthritis and rheumatism, suggesting that it was a very common problem.
A weakness or exhaustion of the nervous system was described by Beach, a New York physician, in 1869.14 It could affect both sexes and was often associated with headache, insomnia, moodiness, irritability, and depression. Patients might also have “spinal symptoms,” including pain in the neck, back, and legs, and “spots of local tenderness.” Osler found that “in women it is impossible to say whether this condition is neurasthenia or hysteria.”
This condition, found primarily in women, had been recognized since ancient times, and attributed to toxic influences emanating from the uterus.15 In the 1870's, Charcot dismissed a uterine etiology, and proposed that hysteria was a neuropsychiatric condition, often triggered by physical or emotional trauma.16 Hysteria could have many diverse manifestations, including paralysis, pseudoseizures, blindness, contractures, anesthesia, and amnesia. Diagnosis was based upon a past history of emotional instability coupled with failure to demonstrate an “organic” basis for the symptoms and atypical findings on physical examination. Unexplained pain was a common hysterical feature, including localized (headache, back pain, pseudoangina) or generalized pain. Hysterical women also had tender points (“Hysterogenic spots of Richet”) which were not confined to painful areas.9 A popular Gilded Age neurology textbook noted that muscular hyperesthesia was common in hysterical women.17
Charcot recognized that the symptoms of neurasthenia and hysteria had a remarkable overlap, but considered them to be distinct conditions.16 Neurasthenia, which Charcot described as “the American disease,” was characterized by more symptoms than signs and was considered to be a “neurosis,” a disorder without a neuropathologic basis.16
Charcot regarded these patients as “insufferable,” but conceded that they represented the majority of patients in his private practice in Paris. Similar treatments were recommended for both disorders and virtually all were experienced by Alice James, including electrical stimulation, massage, passive exercise, spa therapy, and bed rest. The prevailing view in the Gilded Age was that active or aerobic exercise, which modern studies have shown to reduce FM symptoms, would be likely to aggravate neurasthenia and hysteria. Women were considered to be constitutionally unfit for sustained physical or mental exertion; those who ignored their natural limits were attempting to compete with men and risking both sickness and loss of feminine virtue.11
In the 19th century there was widespread belief that in individuals with predisposition to gout, by virtue of heredity or lifestyle, the disease might assume many different forms until a typical acute attack confirmed the diagnosis and established the regular pattern.18 This status had many names, such as suppressed, misplaced, irregular, or failed gout. It could present as pain in the back, head, chest, abdomen, throat or elsewhere, or as painless episodes, such as asthma, vertigo, seizures, hemiparesis, and as many other symptoms.
The underlying problem was a systemic acidosis, and although an alkaline diet was somewhat beneficial, remission would not occur until the onset of true gouty attacks. Attempts to induce these by immersing a foot in hot water while rapidly quaffing an alcoholic beverage were often undertaken but rarely succeeded. Garrod did not accept this concept, stating, quite in tune with modern views of gout as part of the Metabolic Syndrome: “Many of the powerful predisposing causes of gout tend likewise to produce other diseases, but these latter . . . are not necessarily gouty . . . .”13 However, belief in variant gout persisted well into the 20th century and a gouty diathesis was listed among underlying causes of fibrositis in a review by a committee of leading American rheumatologists in the 1930s.19
It is impossible to estimate how often FM was attributed to variant gout in the Gilded Age. As shown in the case of Alice James, one patient might carry several diagnoses sequentially or concurrently.
The case of Alice James is a good example of FM in the Gilded Age, but there are many others which are not as well-documented. Several diagnoses and pathogenetic explanations were offered to account for disabling, widespread pain in women, often reflecting sexist bias on the part of their male physicians. Popular therapies of that era often produced temporary relief, but seldom a sustained remission.
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