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Self-care actions to manage fatigue among myasthenia gravis patients.

Introduction

Fatigue is the most prominent and troublesome symptom reported by patients with the autoimmune disease, myasthenia gravis (MG).[21] Classified as a neuromuscular disease, MG results from an antibody which diminishes the integrity of motor end plates on skeletal muscle, and minimizes the ability of muscle to contract. Consequently, fatigue readily results as muscle stimulation occurs.[16] The subsequent impact on patients' lives is immense, leading to physical debilitation and psychological distress. Even though fatigue dominates the lives of MG patients, they are often left to self manage their fatigue. Overall, interventions for MG have focused on treating the disease process itself. Specific strategies to manage symptoms are either nonexistent or too general. In addition, some instructions may conflict, such as those relating to activity. Some patients have been advised to refrain from any form of exercise and all forms of strenuous activity, while others are advised to be as active as they can be. Thus, patients develop their own self-management actions. This article reviews fatigue and reports on a study of self-care actions used to manage fatigue in MG. The purposes of this study were to: (1) determine what self-care actions are used by MG patients to manage their fatigue, (2) examine the relationship between fatigue and the self-care actions taken by MG patients and (3) to correlate demographic and functional status of MG patients on self-care actions and fatigue score.

Normal Fatigue

Before discussing the fatigue associated with MG, it is helpful to review the psychological and physiologic concept of normal fatigue. Fatigue has been defined by Hart as a human sensation, a perception of an unpleasant feeling associated with discomfort, decrease in motor and mental skills and increased task aversion.[13] Normal physiologic fatigue occurs in health and is a stimulus for sleep and rest. Indeed, fatigue serves as a mechanism whereby slow-down or cessation of physiologic function is initiated, allowing for regeneration, thus preventing the overuse of cells, tissues and organ systems.[8] In the absence of fatigue, a state of exhaustion ensues, characterized by mental disorientation and physiologic disturbance. Normal human fatigue, under the influence of circadian rhthyms, is an expected unpleasant sensation following increased or excessive energy expenditure; it is relieved by rest or sleep.

Pathological Fatigue

Fatigue that occurs without warning or is unrelieved by usual means is distressing; fatigue that interferes with daily activities is considered pathologic. Feeling tired before beginning activities, lacking the energy required to accomplish tasks with sustained effort and attention or having an abnormal degree of exhaustion following habitual activities is considered pathologic fatigue.[17] Further explanation of abnormal fatigue has been offered by Eidelman suggesting fatigue is triggered by an unusual cause, produces an extremely intense feeling and is characterized by a delayed, inadequate or incomplete recovery.[8] Fatigue is a paradox as it exists as both a symptom of disease as well as an adaptive response required for the maintenance of health.[8,26]

Fatigue: A Multidimensional Concept

Fatigue can be viewed as existing on a continuum, at one end is normal fatigue and at the other is pathological fatigue. It is the degree of the problem which differentiates normal from pathologic fatigue. While there is not an accepted universal definition of fatigue, most agree that it is multidimensional and multicausal.[13,22] Thus, both normal and pathological fatigue are defined by the same dimensions. These dimensions are not uniformly named but generally can be characterized into three broad categories.

Dimension One: Fatigue is a Perceived Sensation

The first dimension of fatigue, a perceptible sensation, is described as an unpleasant feeling of weariness.[13] This perception arises from the complex interplay of somatic and psychological factors.[24] Fatigue is not the same as boredom or depression, and must be discriminated from these conditions. Boredom, an apathy or disinterest towards present activity, may be reversed by diversion or an interesting stimulus. Depression, a distinct clinical entity, has been reported in combination with fatigue states, and needs to be isolated from the clinical indicators of fatigue.[28] By definition, depression is a clinical affective disorder characterized by extreme sadness, a sense of worthlessness, a forlorn mood state and changes in appetite and sleep. There is evidence that clinical characteristics of fatigue differ from symptoms seen in depressive, infectious and neuromuscular illness.[28] In a prospective study undertaken by Wessely and associates, fatigue symptoms were discriminated between those of depression (affective), neuromuscular and chronic fatigue syndrome (CFS). The study provided general fatigue symptoms by dividing them into specific dimensions: perception, physical (normal physical signs), mental and somatic (true pathologic symptoms). Findings indicated those patients with affective disorders reported more severe fatigue symptoms than those with neuromuscular disease. Mental symptoms were more pronounced in the affective disorder and CFS groups than in the neuromuscular group. Precipitation of fatigue through mental effort was significantly more prevalent in those patients with affective disorders and CFS than those with neuromuscular disease. The authors concluded depression can be distinguished from fatigue on the basis those with depression rate the mental dimension more prominently than the physical and somatic dimensions. Conversely those with neuromuscular disease rated physical and somatic dimensions greater than the mental dimension.[28] In addition, motor weakness is the major 1factor in neuromuscular disease, but that is absent in depression.[7]

Dimension Two: Fatigue Produces Task Aversion.

Task aversion is an integral dimension of fatigue as it occurs in any form of fatigue. It refers to the diminished interest an individual feels or displays towards formal or structured duties and is demonstrated by a difficulty in decision making or concentration, as well as completing the physical requirements of structured activities. Distinct from energy expenditure, it is experienced as a cue to rest or do something less demanding. Identified by Bartley and Chute in 1947 and reiterated by Yostitake in 1971, task aversion presents an objective measure of a fatigue state; that is as fatigue increases, ability to perform a task diminishes.[2,30]

Dimension Three: Physiologic Change

The physiologic dimension of fatigue refers to observable physical signs or somatic symptoms which accompany normal or abnormal fatigue. In MG, these changes are directly related to neuromuscular fatigue and may be manifest in clinical symptoms such as ptosis of the eyelid or difficulty swallowing, speaking or breathing.

Neuromuscular Fatigue

Fatigue may be experienced in a specific part of the body or as a whole body experience.[23] Fatigue within one or more major muscle groups is referred to as neuromuscular fatigue. By definition, neuromuscular fatigue is the failure to maintain force during sustained or repeated contractions due to the action of neuromuscular mechanisms.[12] If neuromuscular mechanisms are intact, the fatigue which results from repeated stimulation is normal. If not intact, pathologic fatigue results.

A generalized fatigue state, however, may be precipitated by a variety of causes, and has been associated with central mechanisms. Edwards and Jones, proposed a neurophysiologic model composed of both peripheral and central mechanisms to explain the nature of fatigue.[7] The model was based on a comprehensive review of neuromuscular research. Mosso, in 1915, theorized the origin of fatigue involved central mechanisms. This means the central nervous system may reduce its motor drive before any evidence of failure in the contractile processes of muscle was visible.[19] This view was supported and unchallenged until 1954 when it was discovered in laboratory experiments that peripheral mechanisms are also involved, arising from the muscle itself or impaired transmission of the nervous impulse.[18] In addition, since the mid 1970s, researchers noted an individual's motivation influenced the perception of fatigue. If a given task is perceived to be difficult and requires great effort, it will be become more difficult to complete. This perception of the sensation of fatigue is also the least understood. It is not known whether the origin of the sensation of fatigue is due to an efferent motor drive to the muscle[9] or by the various sensory information returning to the brain from the muscles, tendons and joints involved in the contraction of muscle.[4] These conclusions, reached by various investigators, suggest fatigue results from central and peripheral mechanisms. Central mechanisms include lack of motivation, impaired spinal cord transmission or recruitment of motor neurons, inhibition of voluntary effort and malfunction of nerve cells. Other central mechanisms include an increase of plasma tryptophan-branched chain amino acids ratio that results in increased synthesis of 5-hydroxytryptamine, a central neurotransmitter.[20] If the concentration of this essential amino acid increases, it is believed ATP is reduced causing postsynaptic inhibition and hyperpnea, it has also been suggested that the reticular formation is also involved in the increased or decreased sensation of fatigue.

Peripheral mechanisms include impaired peripheral nerve function, neuromuscular junction transmission and fiber activation. Central and peripheral mechanisms may act independently or together to produce the sensation of fatigue.

Myasthenia Gravis and Fatigue

In MG, peripheral mechanisms are impaired because of a disease process, thus the manifestation of neuromuscular fatigue will be prevalent and sustained until remission or treatment of the disease. In a companion study conducted by the present authors, it was discovered that MG patients report severe fatigue. This fatigue was found to be significantly greater than that reported by normal persons in a fatigued state. In addition, subanalyses revealed that MG patients perceive fatigue to be greater, have more difficulty in task completion and report more somatic signs of neuromuscular fatigue. Fatigue in MG patients is variable; at times it was reported to be pervasive. At other times, it was reported to be intermittent. At times it was related to even mild activity, although not always. MG fatigue was generally reported to be intensified by stress, extreme temperatures, high humidity and activity. Fatigue scores correlated most closely with a self report of functional status; that is, as fatigue increased functional status decreased.[11]

To date there are no specific protocols to guide the clinical management of fatigue. This leaves patients to self-manage their fatigue.

Method Overview

A nonexperimental design was used to elicit information about fatigue from MG patients. Three sets of data were produced. The first set estimated the psychometric properties of the instruments used. The second set of data assigned a fatigue score to participants and defined the characteristics of MG fatigue. The third set, reported here, described self care actions used to manage fatigue among MG patients. In addition, subanalyses were performed to examine relationships between self care actions and a fatigue score as well as functional status.

Staple

To determine how MG patients manage fatigue, participants from the National Myasthenia Gravis Foundation responded to two fatigue instruments. The data-producing sample (N = 250) was procured in a two step process.

Ten state chapters of the National Myasthenia Gravis Foundation were chosen because of their geographic region, climatic conditions and access to large groups of MG patients. The chapter presidents/executive directors were contacted by phone and, if willing to be involved were sent a follow-up letter. The presidents/executive directors distributed study packets directly to participants. A total of 550 packets were distributed.

Study packets contained a cover letter explaining the purpose of the study, informed consent and two questionnaires, The Fatigue Survey and the Myasthenia Gravis Fatigue Scale. Participants were asked to complete the questionnaires and return them in a self-addressed, stamped envelope to the researcher.

In addition, participants were also solicited through the National Myasthenia Gravis newsletter. These additional individuals (who expanded the geographic distribution) were sent a packet with the same instructions.

Of the 550 packets distributed, 224 were returned from the 10 state chapters and 26 from independent participants who requested a packet. The final sample included 250 participants with a response rate of 46%. Infrequent meeting schedules for support groups, and presidents/ executive directors' inaccurate estimate of potential participants accounted for low response rate. However, enthusiasm for the project was stated by most participants as additional comments on returned surveys.

Instruments

The Fatigue Survey (FS) is an open-ended questionnaire designed by Hubsky and Sears[26] for use with MS patients and modified (with permission) for this study. The FS defines fatigue to be a feeling of inability to function physically, emotionally and mentally at the usual level. It results in overall unpleasantness and difficulty in doing things. It affects what a person does, thinks and feels. It may not be related to how much energy is used. The FS elicits a fatigue history which provides data about the characteristics of fatigue, self-care interventions and its impact on functional status. The FS consists of five broad categories and twelve questions in the form of a checklist but with an opportunity for one or multiple responses. The five categories included (1) demographic and medical information, (2) description of fatigue characteristics, (3) precipitating factors, (4) interventions to reduce fatigue and activities to manage fatigue and (5) a rating of current functional status. By definition, functional status is a summary measure of the subject's self evaluation of personal activities including effects of MG symptoms and treatment. Respondents were asked to select a level which most closely coincided with their current activity status and limitations of daily living on a scale ranging from 1-5 where 1 = fully active, 2 = some restrictions to usual activity, 3 = requires some assistance with usual activities, 4 = unable to function without assistance and 5 = totally dependent. Assistance refers to caretaker and/or assistive devices such as wheelchairs, walkers or canes. The respondents were free to add information to more fully explain their responses. The modified FS was pretested in a pilot study with a group of 24 local MG patients and produced a content validity index (CVI) of .95 and generated an alpha reliability .85, comparable coefficients to those reported by Sears and Hubsky.[26]

The Myasthenia Gravis Fatigue Scale (MGFS) is a 26-item Likert scale developed and tested by the authors.[10] It's purpose is to measure fatigue severity. Respondents are asked to respond to the items on three subscales (subscales represent the three dimensions of fatigue). Subscale one, myasthenia gravis perception (MGP), measures the perception of fatigue and consists of 9 items. Subscale two, myasthenia gravis task avoidance (MGT), measures task avoidance behaviors (reduction in mental and physical capability) with 8 items. Subscale three, myasthenia gravis motor symptoms (MGM), with 9 items measures the actual motor change (or symptoms) that represent the true muscle fatigue of MG. The respondent is asked to indicate, on a scale ranging from 1 (always) to 5 (never), what is the most likely reaction to the items. Scores of the MGFS may range from 130, fully rested to 26, exhausted.

In a series of preliminary tests, the psychometric properties of the MGFS were evaluated. Content validity indexes (CVI) of .95 and .98 were estimated on two subsequent occasions. Construct validity was estimated, using a T test comparing the fatigue of MG patients with normal adults with a statistically significant difference (p=.001) in fatigue score, and providing a normal fatigue score (100 for women and 110 for men). Test-retest reliability of the MGFS was estimated to be .85 (using both MG and normal groups), as well as, alpha reliabilities of .80, .70, .92 and .89, respectively for the subscales and overall scale. A generalizability study or G study evaluated the scales ability to distinguish levels of fatigue severity among different groups and estimated two coefficients 1) coefficient relative (G rel) of .87 and coefficient absolute (Gabs) of .79, indicating no consolidation of scale error.

Procedure

Respondents were instructed to complete the instruments and return them to the researcher by mail. Subjects were coded by number and geographic area via postmark. Data were analyzed via SPSS as frequencies and descriptive statistics used with continuous variables. Differences among groups were explored via T tests, and correlations via Pearson Moment Correlation.

Results Sample Characteristics

The sample consisted of 250 MG patients, who provided data from eighteen different states. The age of respondents ranged from 18-90 years with a mean age of 54.4 years. Within the sample, 172 women and 78 men participated in the study. In addition, a crossection of patients identified themselves as having ocular (n = 27) or generalized (n = 223) MG. Duration of MG among the subjects ranged from newly diagnosed to over a thirty year period with a mean duration being 10.5 years.

The Fatigue Survey

The Fatigue Survey provided specific data about functional status and self-care actions to manage fatigue. The sample reported functional status categories to be:

* Level one (fully active, no limitations) 25%

* Level two (some restrictions) 45%

* Level three (serious restrictions) 12%

* Level four (requires assistance) 1%

* Level five (totally dependent) 0%

Respondents provided information on which self care actions they used to manage fatigue (Table 1). The activity of changing one's lifestyle was utilized by the overwhelming majority, (90%) of respondents. Examples of how lifestyle was changed were anecdotally offered such as retired from work, dropped to part-time employment, changed positions, attended support group meetings and gave up favorite activities such as tennis, travel and drinking alcohol.

Table 1. MG Self-Care Action Categories and Reported Frequencies
Mental Interventions
 Recognition of limits before becoming tired 78%
 Avoidance of pushing to limits 72%
 Avoidance of stress 62%
 Seek medical assistance 7%
 Use crystals 5%
 Hot tub 5%
 Self hypnosis 5%
 Read 3%
 Pray 3%
 Listen to music 3%
 Watch TV 3%
 Talk to someone 3%
 Meditate 1%

Physical Interventions
 Most activity performed during peak energy
 time 71%
 Participate in physical activity as possible 59%
 Organize home/workplace to conserve energy 48%
 Delegation of necessary tasks to others 30%
 Use low impact aerobic exercise swimming, 20%
 walking or running
 Use of a cane, wheelchair, or other aid 15%
 Employ home help 14%

Rest and Sleep
 Rest whenever necessary 77%
 Sleep fairly regular hours 74%
 Avoid late hours 74%
 Tiring tasks are done in steps, work then
 rest 70%
 Take naps 59%


Mental interventions were also used to reduce fatigue (Fig 1). Recognition of limits before becoming tired was used by 78% of the sample while 72% reported avoidance of pushing themselves to the limits. Stress avoidance was used by 62%. Other ways to mentally manage fatigue were offered anecdotally such as seeking medical assistance (7%), use of crystals (5%), hot tub (5%), use of self hypnosis (5%), reading (3%), prayer (3%), listening to music (3%), watching TV (3%), talking to someone (3%) and meditation (1%).

[Figure 1 ILLUSTRATION OMITTED]

In addition, physical interventions were used including engaging in as much physical activity as possible (59%) and especially during peak energy time (71%). Energy conservation activities such as organizing their homes/workplace (48%), delegating tasks to family, friends or coworkers (30%), employing home help (14%) and use of a cane, wheelchair and other aids (15%) were used by respondents. Of most interest was the use of low impact aerobic exercise by (20%), such as swimming, walking, running. Of this group,two thirds (n = 25) reported an exercise program helped while one third (n = 11) reported exercise did not relieve their fatigue.

Of the participants, 77% reported resting whenever necessary, 74% slept regular hours and avoided late hours. Seventy percent reported performing tiring tasks in steps. Naps were taken by 59%.

The Myasthenia Gravis Fatigue Scale

The mean fatigue score for the entire MG sample was calculated to be 78.54 (SD-18.1, range 33-113). Among the entire MG sample, women reported a mean total fatigue score of 78 with a SD of 17.4 while men reported a mean total fatigue score of 85 with a SD of 13.2. Fatigue severity scores within age categories did not demonstrate a significance difference, whereas between men and women it did, p = .001, (t = 7.25).

The relationship between fatigue scores and self-care actions were explored using Chi square. No significant relationship was demonstrated. Most respondents, despite fatigue score, used a wide variety of self-care actions to manage fatigue with mental interventions reported by 76%, physical interventions 78% and rest/sleep by 80% of respondents. Thus, while it is conceivable they exist, no patterns were elicited.

When demographic and functional status were correlated with both fatigue score and self-care actions results revealed women report greater fatigue than do men in age categories, and functional status categories. Female respondents who assigned themselves to functional level one (the most functional) reported mean fatigue scores of 88.31 while men in the same level reported 101.2. Functional level two (limitations to daily living) persons showed mean fatigue scores for women to be 71.12 and men to be 79.74. Functional level three (severe limitations to daily living) persons showed mean fatigue scores of women to be 61 and men to be 76.6. No male subjects assigned themselves to Functional level 4 while few women assigned themselves to functional level 4 providing no opportunity for comparison. No men or women assigned themselves to functional level 5. In addition, when fatigue scores with were compared to one another significant differences were demonstrated between each group (Table 2). When self care actions were associated with functional status and fatigue score, those who participated in aerobic exercise occupied the two highest functional levels.

Table 2. Comparison of Aerobic Exercise Users and Total Sample Fatigue Scores within Functional Categories
 Total Sample X-Fatigue Aerobic Users X-Fatigue
 Score 78.54 Score 86
Level Males (n) Females (n) Males (n) Females (n)
 1 101.2(16) 88.31(26)(***) 102(6) 90(17)
 2 79.74(23) 71.12(49)(**) 80(5) 71(8)(*)
 3 76.60(5) 61(16)(*)


Only two women available on Level 4, no one assigned to Level 5. (*) p=.05 (**) p=.01 (***) p=.001 p value represents statistical significance between male and female at level 1, 2 and 3 No significant difference between mean fatigue score and total sample and aerobic users

Discussion

A major consequence of MG is fatigue which affects patients' lives. Since fatigue is composed of a perception, reduced ability to complete tasks and physical or pathologic signs, MG patients self manage fatigue in ways that diminish the perception of fatigue, conserve energy and actively reduce fatigue. This group of MG patients self managed fatigue in a general way by altering one's lifestyle and in personal ways. The highly specific actions to manage fatigue, grouped under the headings of mental interventions (to reduce perception), physical interventions (to enhance task completion) and rest and sleep (reduce fatigue symptoms), are congruent with the limited studies that identify interventions to reduce fatigue.[22]

When MG respondents report using mental interventions to manage fatigue, the underlying strategies are cognitive control or knowledge, distraction and diversion (reading, listening to music) and stress reduction. Cognitive control is a preventive measure in which the patient tries to ward off fatigue, through knowledge of self which limits activities so as to avoid unnecessary fatigue. It has been reported by Ho-Yen that chronically ill patients come to recognize that fatigue on exertion is a warning sign.[14] Changing their behavior, as this group did, indicates insight into their illness.

Distracting or diversional activities were consistently reported by MG patients as a way to reduce unpleasant sensations. It has been hypothesized that when distracting ideas are entertained, there is an inflow of nerve impulses from nonfatigued areas of the body which facilitate the reticular formation, resulting in the decreased sensation of central fatigue.[1]

Actively reducing stress was also a commonly reported strategy by MG patients. Stress is often cited as an intervening variable that increases the experience of fatigue. While patients actively engage in stress reduction activities, there is little research to confirm the role of stress in the development and perception of fatigue. However, in the general population fatigue is highly associated with emotional distress or stress. It has been reported adults who experience any psychological problem are at much higher risk of feeling fatigued than those who are free from psychological problems. Interestingly, coping with stress may enhance an individual's ability to cope with other symptoms such as fatigue.[5]

The physical interventions used by this group of respondents conserve energy or, in the case of aerobic exercise, reduce fatigue. Energy conservation is accomplished by activities that reduce metabolic and oxygen consumption requirements of activities. Typically, it involves planning, organizing and balancing the patient's available energy with activities by techniques that maximize energy expenditure which this group reported.

Physical inactivity and fatigue may be related. Inactivity may actually lead to increased fatigue, although study results examining this relationship are conflicting. Chronic disease and its treatment lead to the development of symptoms that limit activity.[25] Inactivity results in lowered energy levels and increased feelings of fatigue. A downward spiral ensues with greater inactivity leading to even more fatigue among patients.[29] In addition, National Aeronautics and Space Administration's (NASA) research on complete inactivity in healthy individuals found that inactivity led to a wide range of negative physiologic and psychological changes such as loss of muscle and bone tissue, as well as mood disturbances.[3] It can at this time only be speculated that these same changes occur in inactive MG patients.

Use of aerobic exercise by a subset of the sample was a surprising finding, particularly since most MG patients anecdotally reported being advised to refrain from exercise. Those who did engage in low-impact aerobic exercise were among the two highest functional status categories, whether they found exercise helpful or not. Aerobic exercise serves a variety of functions believed to reduce fatigue. Among them are increased oxidative capacity and efficiency of energy utilization. At the muscle level aerobic exercise increases the number and density of mitochondria, and the specific activities of the mitochondrial enzymes of the fast twitch and slow twitch fibers that are recruited during aerobic training. An overall increase in skeletal muscle, as well as, the number of capillaries in muscle also occurs. Combined these changes serve as a collective function for using oxygen more efficiently and diverting glycogen stores.[27] In a normal population of athletes engaged in endurance training, it was found there were increased levels of the malate-aspartate shuttle enzyme system that might decrease lactate accumulation during exercise, thus further decreasing muscle fatigue.[27]

Mental and mood improvement has been reported with aerobic exercise, as well as an actual decrease in fatigue. The salutary effects of exercise on depression and fatigue are believed to be due to the release of endogenous endorphin.[23] In addition, studies have indicated that exercise may improve body image and physical stamina as well as provide an enriched social network.

The use of rest and sleep as an active self-care action reported by the sample is the natural adaptive mechanism to cope with the sensation and effects of fatigue. However, little is known as to recommendations for rest, except extremes of rest and inactivity are not advocated.[25] The question arises, how much rest should follow activities or what rest prescription would facilitate optimum functioning? A balance between appropriate exertion and rest is desirable, but achieving the balance presents real dilemmas for patients. One patient remarked, "I don't know how far I can go. I don't want to be lazy, but I don't know if I should push myself, because sometimes it only makes me feel worse. What do I do?"

In addition, differences between men and women were also demonstrated in this study with women consistently reporting more fatigue than do men in every functional level (where comparison was possible) and age category. This finding is consistent with other studies which have compared fatigue between men and women[6,15] but the reason is unclear.

Limitations

There are many limitations of this study. There are inherent problems in using a mailed survey as a data collection method. The data in this study are subject to sampling error. Sources of sampling error include nonresponse bias; the nonrespondents may differ significantly from those who did respond. It was impossible to follow up on nonrespondents because of study design. Another limitation of a mailed questionnaire is respondent self-selection. Response is strongly influenced by the respondent's interest in the survey. Other limitations of this study include the minimal information sought in the area of activity and exercise. Since this line of questioning has revealed such provocative information, it would be helpful to have a richer description of the exercise intervention. All respondents reported a variety of interventions to manage fatigue, but the priority of interventions was not determined and thus a limitation of this study. In general, the study of clinical fatigue is scarce and limited. Measurement of fatigue is complicated by participants' personal assumptions and cultural differences which affect reliable interpretation of their fatigue. Future study is necessary to evaluate if low-impact aerobic exercise could serve as an intervention for MG patients to help manage their fatigue. Other studies are needed to investigate the relationship between those patients who do engage in low impact aerobic exercise and their functional status, as it would be important to understand if the patient's functional status allows exercise or if exercise assists patient's to be more functional. Results from this study suggest this line of inquiry. Other research is needed to determine what criteria patients must exhibit, for this strategy to be beneficial and not harmful. The role of nutritional supplements to facilitate exercise and minimize fatigue would also be helpful information. It would also be of value to link appropriate interventions for those patients who manifest specific clinical characteristics and a fatigue score. The gender difference in fatigue severity between men and women should also be investigated if indeed it exists.

Summary

Myasthenia gravis patients experience pathologic fatigue as a consequence of the disease which impairs peripheral neuromuscular mechanisms. Because fatigue is a multidimensional experience, managing it may be complex. Patients report managing fatigue through a variety of self care actions. Most, however, report moderating their life style, using mental mechanisms to reduce stress and distract, as well as maintaining a balance between rest and activity. A subset of respondents reported using low impact aerobic exercise to help manage their fatigue. Those who did exercise occupied the two highest functional categories whether they stated exercise to be of benefit or not.

As a result of this study, implications for nursing practice include assisting patients to recognize their fatigue as a major symptom. Self assessment of fatigue is integral to management because it is the perception of fatigue that alerts the patient to rest or act in such a way as to relieve fatigue. Nurses should support those self-care actions which patients find helpful. In so doing, a patient's sense of well being and control are enhanced. In addition, suggesting self-care actions used by other patients may also be helpful to patients, with the exception of low level aerobic exercise. The role of low impact aerobic exercise as a strategy to manage MG fatigue is yet to be determined, as well as which patients would benefit or be adversely affected. Finally, there is a growing interest and research effort about the effects of exercise on chronic, neuromuscular and autoimmune diseases. Thus it is conceivable that specific protocols will be available to assist MG patients in the future.

References

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[10.] Grohar-Murray M, Becket A: The development and testing of a fatigue scale for myasthenia gravis. Unpublished manuscript 1994.

[11.] Grohar-Murray M, Becker A: The fatigue of myasthenai gravis. Accepted for publication in MNRS and Sigma Theata Tau Monograph. Pending publication.

[12.] Guyton A: Pages 80-84 in: Textbook of Medical Physiology, 8th ed. WB Saunders 1991.

[13.] Hart L, Freel M, Milde F: Fatigue. Nurs Clin of North Amer 1990; 25(4):967-976.

[14.] Ho Yen DO, Patient management of post viral fatigue syndrome. Brit J Gert Pract 1990; 40(330):37-39.

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[18.] Merton PA: Voluntary strength and fatigue. J Physiol 1954: 123, 553-564.

[19.] Mosso A: Pages 78-80 in: Fatigue. (Translated by Drummond M. and Drummond WG.) Allen & Unwin 1915.

[20.] Newsholme EA, Acworth JN, Blomstrand E: Pages 127-133 in: Advances in Myochemistry, Benzi G (editor). Amino acids, brain neurotransmitters and a functional link between muscle and brain that is important in sustained exercise, John Libbey, 1987.

[21.] Ochs C: Symptomatology of myasthenia gravis. Presented at the annual scientific session, medical advisory board, Myasthenia Gravis Foundation, Chicago, IL, 1992.

[22.] Piper B, Reiger P, Brophy L, Haeuber D, Hood L, Lyver A, Sharp E: Fatigue. Oncol Nurs For 1989; 16(6):27-34.

[23.] Piper BF: Fatigue. Pages 279-302 in: Pathophysiological Phenonomena in Nursing, 2nd ed, Carrieri-Kohlman V, Lindsey A, West CM (editors), WB Saunders 1993.

[24.] Potempa K, Lopez M, Reid C, Lawson L: Chronic fatigue. Image 1986; 18(4):165-169.

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[26.] Sears J, Hubsky E: Fatigue in patients with Multiple Sclerosis, 1 R15 NR O2471, unpublished research summary.

[27.] Smith C: Exercise. Primary Care 1991; 18(2):271-277.

[28.] Wessely R: Fatigue syndromes: a comparison of chronic "post viral" fatigue with neuromuscular and affective disorders. J Neurol Neurosurg Psychiatry 1989; 52(8):940-948.

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Questions or comments about this article may be directed to: Mary Ellen Grohar-Murray, RN, PhD, Associate Professor of Nursing, at St. Louis University School of Nursing, 3525 Caroline Street, St. Louis, Missouri 63104.

Ann Becker, RN, MSN, is an associate professor of nursing at St. Louis University School of Nursing. Sarah Reilly, RN, BSN, is a research assistant at St. Louis University.

Marilyn Ricci, RN, MSN, is a clinical researcher at Barrow Neurological Institute, St. Joseph's Medical Center, Phoenix Arizona.

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Author:Grohar-Murray, Mary Ellen; Becker, Ann; Reilly, Sarah; Ricci, Marilyn
Publication:Journal of Neuroscience Nursing
Date:Jun 1, 1998
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