http://www.nationalmssociety.org/ms_nursing/pdf/NM_Pain.pdf

December 2003
Elida J. Greinel, MSN, RN
MS Nursing - Introduction to Multiple Sclerosis Nursing Care
The National Multiple Sclerosis Society

OBJECTIVES

After reading this article, nurses who are new to the care of people with MS will be able to the following:

• Recognize challenges associated with invisible symptoms
• Describe characteristics of MS-related fatigue and factors that may contribute to it
• List strategies for managing fatigue
• Describe types of MS-related pain
• Describe treatments used for pain management

In addition to the other, more obvious challenges associated with treating a chronic, progressive autoimmune disease, are those posed by the “invisible” symptoms of MS. The diagnosis and treatment (including both medical and educational interventions) depend on accurate information about these elusive symptoms, as well as effective communication between people with MS and their healthcare team. Nurses play a pivotal role in this process. Because they tend to spend the most time with patients, they are often in the best position to recognize the invisible symptoms a patient is experiencing, assess their impact on day-to-day functioning, interpersonal relationships, and quality of life, and provide support and management recommendations. Invisible symptoms can be defined as any that are not obvious to others—even the healthcare professional.

The invisible symptoms of MS can include parasthesias, cognitive dysfunction, depression or other mood changes, sexual dysfunction, pain, fatigue, and even elimination problems. Too often, patients will neglect to mention symptoms like these, either because they are unaware of their relationship to MS or because they are too embarrassed to talk about them. An essential component of every office visit is a careful review of any new or uncomfortable problems the person is experiencing; this will help to ensure that the invisible symptoms of MS get the attention they require.

To illustrate the challenges associated with the invisible symptoms of MS, this module focuses on the diagnosis and management of fatigue and pain in MS.

FATIGUE

Fatigue has been defined by the Multiple Sclerosis Council for Clinical Practice Guidelines as “a subjective lack of physical and/or mental energy that is perceived by the individual or caregiver to interfere with usual and desired activities” (Multiple Sclerosis Council, 1998). The underlying cause(s) of this unique type of fatigue or lassitude remains unclear, in spite of the high prevalence of this symptom among people with MS. The research indicates that 75–95 percent of people with MS experience fatigue, and 50–60 percent consider it one of their most debilitating symptoms (Fisk, 1994; Freal et al., 1984; Murray, 1985). The impact on an individual’s quality of life is significant, given that:

• Fatigue is a primary factor in the high unemployment rate among people with MS (Edgley, 1991).

• Fatigue significantly increases a person’s degree of impairment and disability and reduces a person’s feelings of self-esteem and control over the illness (Ritvo et al., 1996; Monks, 1989; Schwartz et al., 1996; Vercoulen et al., 1996).

• The following features have been found to distinguish MS-related fatigue from normal fatigue (Krupp et al., 1988):
• Comes on suddenly
• Prevents sustained activity
• Is worsened by heat
• Interferes with responsibilities
• Interferes with physical functioning
• Causes frequent problems

• While every person with MS experiences fatigue from time to time, the fatigue that  requires active intervention can be divided into two types (Multiple Sclerosis Council, 1998):
• Acute fatigue —Any new experience of fatigue or significant increase in feelings of fatigue that markedly interferes with daily activities or quality of life
• Chronic fatigue —Feelings of fatigue that are present for any amount of time on 50 percent of days for more than six weeks

• Fatigue can appear or markedly increase during an exacerbation, and subside as the exacerbation resolves (Krupp & Elkins, 2000; Krupp, 2000).

• A person’s level of fatigue can increase significantly in conjunction with an elevated core body temperature caused by warm weather, a hot shower, over-exertion or strenuous exercise, or a viral illness. The fatigue generally lessens as the core body temperature returns to normal.

The first step in managing MS-related fatigue is to identify and address possible contributory factors (Krupp & Elkins, 2000; Schapiro, 2003; Multiple Sclerosis Council, 1998).

• Physical deconditioning — As people with MS become less active and more sedentary, their muscles become deconditioned. Like anyone else who is “out of shape,” physical activity becomes more demanding and tiring.

• Mobility impairment — People with MS who are experiencing mobility impairment require increasing amounts of energy to ambulate and carry out ordinary activities of daily living. This increased expenditure of energy results in greater fatigue.

• Disturbed sleep — Sleep disturbances in MS are common, caused by a variety of factors including: periodic limb movements that disrupt the sleep cycle; nocturia; pain from spasticity or other sensory disturbances; clinical depression (experienced at one point or another by at least 50% of people with MS).

• Medications — Many of the medications commonly used in MS, such as anticholinergics, analgesics, benzodiazepines, anti-spasticity drugs, anti-seizure drugs, and the  beta interferons, can produce sleepiness or increased feelings of fatigue.

• Co-existing conditions — People with MS are not immune to other conditions that can produce or increase feelings of fatigue, including depression, heart disease, and transient viral illnesses.

• Primary MS fatigue — a feeling of fatigue that is directly attributable to the MS disease process—remains as yet unexplained. Possible pathophysiologic mechanisms include:
1. a conduction block involving intracortical circuits (Sandroni et al., 1992);
2. intermittent conduction blocks in partially demyelinated central motor pathways (Sheean et al., 1997);
3. impaired recruitment of alpha motor neurons resulting from corticospinal tract involvement (Rice et al., 1992); and 4) abnormal coactivation of agonists and antagonists associated with spasticity (Olgiati et al., 1988).

Management of MS-related fatigue begins by addressing (and eliminating, if possible) each of the possible contributory factors.

• Deconditioning is best addressed by a personalized exercise program to improve strength, tone, and aerobic conditioning. It has been demonstrated that aerobic exercise, tailored to the needs and abilities of the individual, can improve fitness, arm and leg strength, workout capacity, and bladder and bowel control, and reduce depression, fatigue, and anger (Petajan et al., 1996).

• The use of appropriate rehabilitation strategies, including mobility aids and other assistive devices and energy conservation strategies, can reduce fatigue caused by mobility  mpairment and deconditioning (Di Fabio et al., 1998). Early physical and occupational therapy assessment and intervention can enhance function and promote effective energy utilization.

• Medication adjustments, including dosing levels and schedules can sometimes be adjusted to reduce medication-related sleepiness or fatigue. In some instances, other medications may need to be substituted.

• Fatigue that is caused by an exacerbation of MS or by co-existing medical conditions, will decrease as those conditions are addressed. Fatigue related to depression is generally responsive to treatment with a selective serotonin reuptake inhibitor (SSRI) such as fluoxetine (Prozac®) (Schapiro, 2003).

• Primary MS fatigue management includes (Multiple Sclerosis Council, 1998):
• Pharmacologic management
• Amantadine (100 mg bid) is an antiviral agent and a dopamine agonist that has been shown to significantly reduce fatigue in approximately 20–40 percent of mild to moderately disabled people with MS.
• Modafinil (Provigil®) (100–200 mg qd) is a wakefulness-promoting agent that has been shown in a small clinical trial to reduce feelings of fatigue in some individuals with MS.
• Pemoline (Cylert®) (75 mg qd), a central nervous system stimulant that may be an effective short-term treatment of MS-related fatigue, is associated with significant side effects at higher dosage levels.

• Aerobic exercise, which has been shown to improve cardiovascular fitness, strength, and health status in people with mild to moderate MS-related disability, may reduce fatigue in mildly disabled people with MS (Petajan et al., 1996).

• Cooling therapy (e.g., cooling vests, air-conditioning) has been shown to reduce fatigue in heat-sensitive individuals with MS (Capello et al., 1995)

• Energy effectiveness strategies (e.g., time-management; use of mobility aids and other assistive technology), while recognized by clinicians as being effective in helping people to manage their fatigue, have not been systematically evaluated in controlled trials.

Although the association between MS and pain was made by Charcot as long ago as 1872 (Charcot, 1872), the common belief among healthcare professionals until fairly recently was that pain was not a significant problem for people with MS. We now know that pain syndromes are quite common in MS, affecting approximately 45–65 percent of patients. (Indaco et al., 1994; Moulin et al., 1988; Stenager et al., 1991). With 32 percent reporting continuous, unremitting pain for at least one month, pain may in fact be one of the most troubling symptoms of the disease (Vermote et al., 1986). MS patients can experience various types of pain, many of which are quite challenging to control.

Types of MS-Related Pain

MS-related pain can be generally divided into acute syndromes with paroxysmal onset (lasting less than one month) and chronic syndromes with insidious onset (that last more than one month).

Acute syndromes include:

• Trigeminal neuralgia
• Reported by about 9 percent of people with MS, it is 400 times more common in MS than in the general population (Brisman, 1987; Rushton & Olafson, 1965).
• Usually experienced as a sharp, searing facial pain; bilateral in 30 percent of cases.
• Paroxysms can be precipitated by chewing, shaving, and toothbrushing.
• Usually responds to anticonvulsant medication (carbamazepine); other medications include phenytoin, baclofen, clonazepan, lamotrigine, and misoprostol (Jeffery, 2000).
• Refractory trigeminal neuralgia is best treated with radiofrequency thermal rhizotomy or glycerol rhizotomy of the trigeminal ganglion.

• Painful tonic spasms
• Simple flexor spasms, typically brought on by movement or noxious stimuli — best managed with antispasticity therapy (Jeffery, 2000).
• Brief spasms of an upper or lower extremity (also called tonic spinal cord seizures), which can occur several times per day—usually respond to carbamazepine; other medications include phenytoin, gabapentin, clonazepan, tizanidine, and baclofen (Osterman & Westerberg, 1975).

• Lightening-like extremity pain
• Intense shooting pain traveling through virtually any part of the body, often precipitated by movement (Vermote et al., 1986).
• Generally responds to carbamazepine; can also be treated with phenytoin or gabapentin.

• Lhermitte’s sign
• Occurs in any disorder that causes damage to the posterior columns of the cervical spinal cord (Lhermitte et al., 1924).
• Sensation of electric shock that travels down the neck (typically in response to movement of the head and neck), sometimes radiating into the extremities.
• Typically responds to carbamazepine (Ekbom, 1991).

• Optic neuritis
• Sharp, knifelike pain experienced by 80 percent of people with acute optic neuritis (may also include deep ache or pressure sensation above or behind the eye) (Matthews, 1975).
• Results from inflammation and demyelination around the optic nerve, and generally subsides with steroid treatment.

Chronic pain syndromes include

• Dysesthetic extremity pain
• Most common of the chronic pain syndromes, it is described as a burning or aching pain, occurring most often in the lower extremities (Indaco et al., 1994; Vermote et al., 1986).
• Probably caused by demyelination within the posterior columns of the spinal cord.
• Pain typically more severe toward the end of the day.
• Like other chronic syndromes, dysesthetic pain responds less well to carbamazine; recommended treatments include phenytoin and gabapentin, although this type of pain can be refractory to treatment (Jeffery, 2000).

• Band-like pain in torso or extremities (Jeffery, 2000)
• Caused by a lesion in the spinal cord, this pain is characterized by intense pressure or squeezing in a girdle-like pattern around the torso.
• May respond partially to phenytoin or gabapentin.
• For resistant cases, benzodiazepines may be helpful.

• Back pain and radiculopathy (Jeffery, 2000)
• May occur in patients with MS due to: non-MS-related orthopedic problems; musculoskeletal changes due to impaired mobility; or demyelination, possibly in the dorsal root entry zone.
• Treatment typically occurs in a step-wise fashion (Jeffery, 2000)
• Physical therapy and non-steroidal anti-inflammatories
• Trial of gabapentin of phenytoin
• Other possible medications include: tizanidine, baclofen, clonazepam, or tramadol.

• Headache
• Reports indicate that headache may be associated with MS, even as a presenting symptom.
• Treatment is generally the same as for non-MS patients.
• Headache associated with a relapse often responds to steroid treatment.

Some pain syndromes in MS, particularly the more chronic ones, can be quite refractory to treatment. Several medications may need to be tried before an effective one is found, and more than one may be needed at any given time. Once the pain is brought under control, an attempt should be made to stop the first medication since treatment with only one medication at a time produces fewer side effects. In the case of severe, breakthrough pain, narcotics may be necessary. Because patients with unremitting pain are at risk for depression, supportive counseling and/or psychiatric intervention may be required (Indaco et al., 1994; Vermote et al., 1986; Jeffery, 2000).

SUMMARY

Nurses play an integral, active, and dynamic role in the management of invisible symptoms like fatigue and pain. As the member of the healthcare team who is likely to spend most time with a patient, the nurse is ideally situated to identify these challenging symptoms and provide education and support, and implement management strategies designed to meet the unique needs of each individual.

REFERENCES

Brisman R. Trigeminal neuralgia and multiple sclerosis. Arch Neurol 1987;44:379–381.

Capello E, Gardella M, Leandri M, et al. Lowering body temperature with a cooling suit as symptomatic treatment of thermosensitive multiple sclerosis patients. Ital J Neurol Sci 1995;16:533–539.

Charcot JM. Lecons sur les maladies du systeme nerveux faties a la Salpêtrèire. Paris: Delahaye, 1872:239–240.

Di Fabio RP, Soderberg CT, Hansen CR, Schapiro RT. Extended outpatient rehabilitation: its influence on symptom frequency, fatigue, and functional status for persons with progressive multiple sclerosis. Arch Phys Med & Rehabil 1998;79:141–146.

Edgley K, Sullivan M, Dehoux E. A survey of multiple sclerosis: II. Determinants of employment status. Can J Rehabil 1991;4:127–132.

Ekbom K. Carbamazepine, a new symptomatic treatment for the paraesthesia associated with Lhermitte’s sign. J Neurol 1991;200:341–344.

Fisk JD, Pontefract A, Ritvo PG, Archibald CJ, Murray TJ. The impact of fatigue on patients with multiple sclerosis. Can J Neurol Sci 1994;21(1):9–14.

Freal JE, Kraft GH, Coryell JK. Symptomatic fatigue in multiple sclerosis. Arch Phys Med & Rehabil 1984;65:135–138.

Indaco A, Iachetta C, Socci L, Carrieri PB. Chronic and acute pain syndromes in patients with multiple sclerosis. Acta Neurol 1994;16:97–102.

Jeffery DR. Pain and dysesthesia. In: Burks JS, Johnson KP, eds. Multiple Sclerosis Diagnosis, Medical Management, and Rehabilitation. New York: Demos, 2000:425–431.

Krupp LB, Alvarez LA, LaRocca NG, et al. Fatigue in multiple sclerosis. Arch Neurol 1988; 45:435–437.

Krupp LB, Elkins LE. Fatigue. In: Burks JS, Johnson KP, eds. Multiple Sclerosis Diagnosis, Medical Management, and Rehabilitation. New York: Demos, 2000:291–297.

Lhermitte J, Bollak J, Nicholas M. Les douleurs a type de decharge electrique consecutives a la flexion cephalique dans la sclerose en plaques: un cas de forme sensitive de sclerose multiple. Revue Neurol 1924;31:56–62.

Matthews W. Paroxysmal symptoms in multiple sclerosis. J Neurol Neurosurg Psychiatry 1975; 38:617–623.

Monks J. Experiencing symptoms in chronic illness: fatigue in multiple sclerosis. Int Disabil Stud 1989;11:78–83.

Multiple Sclerosis Council for Clinical Practice Guidelines. Fatigue and Multiple Sclerosis: Evidence-Based Management Strategies for Fatigue in Multiple Sclerosis. Washington, DC: Paralyzed Veterans of America, 1998.

Moulin D, Foley K, Ebers G. Pain syndromes in multiple sclerosis. Neurology 1988;38:1830–1834.

Murray TJ. Amantadine therapy for fatigue in MS. Can J Neurol Sci 1985;12:251–254.

Olgiati R, Burgunder JM, Mumenthaler M. Increased energy cost of walking in multiple sclerosis: effect of spasticity, ataxia, and weakness. Arch Phys Med & Rehabil 1988;69:846–849.

Osterman P, Westerberg C. Paroxysmal attacks in multiple sclerosis. Brain 1975;98:189–202.

Petajan JH, Gappmaier E, White AT, et al. Impact of aerobic training on fitness and quality of life in multiple sclerosis. Ann Neurol 1996;39:432–441.

Rice CL, Volmer TL, Bigland-Ritchie B. Neuromuscular responses of patients with multiple sclerosis. Muscle & Nerve 1992;15:1123–1132.

Ritvo PG, Fisk JD, Archibald CJ, et al. Psychosocial and neurologic predictors of mental health in multiple sclerosis. J Clin Epidemiol 1996;49:467–472.

Rushton JG, Olafson R. Trigeminal neuralgia associated with multiple sclerosis: report of 35 cases. Arch Neurol 1965;13:383–386.

Sandroni P, Cameron W, Starr A. Fatigue in patients with multiple sclerosis: motor pathway conduction and event-related potentials. Arch Neurol 1992;49:517–524.

Schwartz CE, Coulthard-Morris L, Zeng Q. Psychosocial correlates of fatigue in multiple sclerosis. Arch Phys Med & Rehabil 1996;77:165–170.

Schapiro RT. Managing the Symptoms of Multiple Sclerosis. New York: Demos, 2003:25–32.

Sheean GL, Murray NMF, Rotwell JC, et al. An electrophysiological study of the mechanism of fatigue in multiple sclerosis. Brain 1997;120:299–315.

Stenager E, Knudsen L, Jensen K. Acute and chronic pain syndromes in multiple sclerosis. Acta Neurol Scand 1991;84:197–200.

Vercoulen JHMM, Hommes OR, Swanink CMA, et al. The measurement of fatigue in patients with MS. Arch Neurol 1996;53:642–649.

Vermote R, Ketelaer P, Carton H. Pain in multiple sclerosis. Clin Neurol Neurosurg 1986; 88:87–93.

REVIEW EXERCISE

1. Invisible symptoms of MS may include

a. Cognitive dysfunction
b. Depression
c. Pain
d. Sexual dysfunction
e. All of the above

a. Amantadine (Symmetrel®)
b. Pemoline (Cylert®)
c. Diazepam (Valium®)
d. Modafenil (Provigil®)

a. Presence of a bacterial or viral infection
b. Age and gender of patient
c. Concomitant medications
d. Depression

a. True
b. False

a. Dysesthetic pain
b. Trigeminal neuralgia
c. Optic neuritis
d. All of the above

Answers: 1 e; 2 c; 3 b; 4 a; 5 d
 

Copyright © 2004, The National Multiple Sclerosis Society