Heidi Maloni PhD, ANP-BC, CNRN, MSCN National Clinical Nursing Director
VA Medical Center, Washington, DC
Nagging, burning, aching, sharp, stabbing or squeezing are words that are used to describe pain experienced by people with multiple sclerosis (MS). About two thirds of people with MS experience some level of pain at some time in their life. Pain should always be addressed as it impacts function and is often associated with depression, anxiety and fatigue.
Pain in MS is directly related to either an MS lesion or plaque in the nervous system (nerve pain), or the effects of disability. When MS makes moving about difficult, stress on muscles, bones and joints can cause pain (musculoskeletal pain). Pain in MS can be caused or worsened by infection, or pressure ulcers.
Nerve pain can be continuous and steady or sudden and irregular. Nerve pain is reported in varying degrees of severity. Fifty percent of those who report MS pain say their pain is constant and severe. Intermittent, sudden pain is described as shooting, stabbing, electric shock-like, or searing and is often caused by sensations that normally do not cause pain like the weight of bed covers, chewing, or a cold breeze. Other examples of intermittent pain include the feelings of tightness, cramping, clawing, and sudden spasms of a limb.
Tightness or band-like feelings, nagging, numbness, tingling in legs or arms, burning, aching, and throbbing pain is termed constant or steady nerve pain. Steady nerve pain is often worse at night or during changes in temperature, and can be worsened with exercise. The most common pain syndromes experienced by people with MS include: headache (seen more in MS than the general population), continuous burning pain in the legs and/or arms, back pain, and painful spasms.
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Pain is measured by what the person with pain says it is. Pain is measured in the hospital or the doctor’s office on a numeric scale of ‘no pain’ to the ‘worst ever pain’. Pain is measured by the affect it has on activities of sleep, play, work, relationships and mood. The measures help providers understand the intensity and the severity of pain, and whether treatments for pain are making a difference. Keeping a pain journal, recording when, where and how long pain lasts, describing the pain (aching, pulling, sharp, cramping, burning, stabbing), recording what makes pain better or worse and what treatments are used is important to appropriate pain treatment.
Recognizing that the severity and intensity of pain is influenced by anxiety, stress and depression is important to pain treatment. Understanding the influence of individual beliefs about pain, such as negative thinking that pain is overtaking life is important to managing pain. Recognizing individual strengths and coping strategies is important to managing pain. Finally, knowing who is there to help is important to pain management.
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Treatment of pain in MS requires consideration of the whole person- the body, mind and spirit. This is called a biopsychosocial approach to pain management. Pain is both a physical sensation, a psychological experience having impact on emotions and emotions having an impact on pain, as well as, influenced by individuals who interact with the persons suffering pain. Addressing the biopsychosocial nature of pain is important to the effective management of MS pain. Pain is complex and often requires a team approach and the skills of pain management experts.
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There are many proven medications used to manage pain in MS. Your provider will know of the most up-to-date medications and combination medications. The use of medications to manage pain in MS is always a balance of risk versus benefit. In other words, medication side effects vs. the effects of pain are considered and continually evaluated in terms of their impact on quality of life. Pain character that is, sharp and intermittent or burning and constant, determines the medication or combination of medications to best manage pain. Opioids are used for moderate to severe pain with great caution for three reasons: The side effects of opioids contribute to severe constipation, sleepiness, and lethargy; tolerance develops to opioids and higher doses are often required to achieve pain relief; opioids are about 30% effective for MS nerve pain. Opioid use can exaggerate pain sensations and decrease activity levels. In other words, opioids used for MS pain may cause more harm than good and when considered, management of opioid side effects is very important. Massage and acupuncture modulate the experience of pain by expressing the body’s natural opiates, endorphins.
Surgical pain management is sought when medical, physical and behavioral options fail to impact pain outcomes. The sharp, stabbing facial pain of trigeminal neuralgia or painful contractures may require more aggressive management. Surgical procedures for trigeminal neuralgia may be short lived and carry risks of having worse pain or nerve damage that result in facial numbness and tingling. Surgical treatments include non-invasive Gamma-knife stereotactic radiosurgery, or invasive percutaneous rhizotomy, nerve block, or microvascular decompression. Painful contractures are relieved by permanent tendonotomy (cutting tendons). These options are used specifically to manage pain and enhance quality of life.
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Individuals having stress, anxiety or depression report more severe pain. Identifying stressors, causes for anxiety and recognizing depression is important to MS pain management. Relaxation techniques minimize stress. Talk therapy or cognitive-behavioral therapy is one solution for managing psychological factors. Identifying social factors or social support is critical to managing MS pain. Joining a support group, engaging with others, becoming more physically active (joining an exercise group, yoga, tai chi) and mentally active (engaging in discussions with others, taking a class) is important to MS pain management.
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Self-management is a willingness to experience pain and at the same time, engage with life. The experience of pain may be consuming or the focus of every action. Finding meaning in life beyond pain is the goal of pain self-management. Recognizing maladaptive thinking, that MS pain is insurmountable, awful, horrible, unbearable is important to pain self-management. Shifting maladaptive thinking to adaptive thinking and behavior is key. Initiating self-management skills that increase pain coping and pain acceptance is important. Use of coping self-talk, "I have the tools to handle this pain"; "I can have a meaningful life" is helpful.
The aim of self-management is to increase mastery and control over pain. Self-management starts with acceptance of pain, that is, allowing some pain, some of the time. Meditation, relaxation exercises, hypnosis and guided imagery are ways of pain self-management. Mindfulness meditation promotes a non-judgmental awareness of pain and includes acting with intention. Mindfulness is attention to, or focus on, pain, accepting pain, considering the specific pain sensation and adjusting thinking about pain sensation to positive, adaptive thinking. Attention to burning pain, and experiencing warmth is an example of mindfulness meditation. Self-management consists of both thinking and doing. Behavioral activation includes increasing physical activities that are enjoyable, meaningful, or pleasurable. Setting realizable goals for increasing activity is a recipe for success. These techniques and therapies are often overlooked but should be considered from the start of pain symptoms.
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Pain is recognized as a common symptom of MS directly related to the disease and its consequences. Pain is a symptom that demands serious attention, as it has such persistent impact on role, mood, capacity to work and rest, and interpersonal relationships. Untreated pain causes isolation, anger, and depression. The management of pain in MS requires a biopsychosocial approach that includes a mixture of medication, attention to social, emotional and psychological factors, increasing pain self-management and enhancing pain coping, and physical activation. The goal of MS pain management is achievable and functional, to improve mood, sleep and quality of life.
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Center for Mindfulness in Medicine, Health Care, and Society (www.umassmed.edu/cfm)
Date posted: April 2008
Last updated: March 2013