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Multiple Sclerosis Centers of Excellence

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The “Ouch” of Multiple Sclerosis

Heidi Maloni, PhD, APRN, BC-ANP, CNRN, MSCN

Pain. Yes, a symptom experienced by over 60% of people living with MS. Pain is important because if left untreated pain affects relationships, mood, sleep, work, and the ability to have fun and generally enjoy life. Managing MS pain requires work. This article will describe MS pain and some strategies for treating MS pain.

Kinds of Pain Experienced

A lesion or a disruption of central nervous system myelin is responsible for many MS symptoms and is one reason for the symptom of pain. A lesion in your brain or spinal cord can cause nerves to fire in a crazy fashion resulting in pain, called neurogenic pain. Pain may result from living with disability. Muscles, bones, or joints can be painful when stressed due to decreased mobility, long sitting, spasms, and improper use and disuse of these body parts. Then there is headache pain. People with MS seem to have more headache pain than people who do not have MS.

Recognizing and Understanding Pain

It is important to be able to describe your pain in detail so your provider will know the best way of treating your pain. The most helpful way of relaying what your pain is like is to keep a journal. Neurogenic pain is either steady and continuous or intermittent and spontaneous. Steady pain is described as burning, tight, tingling, nagging, aching, or throbbing. Most describe the steady pain as burning in the legs, feet, and hands, while some describe the pain as icy. The nagging sensations of crawling bugs, water running down an arm or leg, or tingling, pins and needles sensations can become so bothersome these are described and treated as pain. Steady pain is often worse at night, with temperature changes, and with exercise. Steady pain is more common than intermittent or spontaneous pain. Intermittent pain is described as stabbing, electric shock-like, or searing. This pain may occur in any part of the body, but often in the face (trigeminal neuralgia).

When writing in your pain journal, describe the feeling, jot down when the pain starts and ends, and where on your body the pain is located. Record what makes the pain worse, what makes it better, and what you are using to decrease the pain. For instance, are you using a complimentary therapy like acupuncture or an over-the-counter treatment like ibuprofen or a muscle rub.

Treating Pain

It is known that emotions such as anxiety, depression, anger, stress, and boredom can affect pain intensity. Lack of support, lack of sleep, and fatigue worsen the experience of pain. Recognizing the importance of general well-being means that in managing pain, your health care provider is going to understand you as a whole person. Your physical experience of pain, your emotional responses, and your support system are considered in pain management. Your pain is then tackled with an integration of medications, interventions to relieve anxiety and depression, and strategies to enhance social support and help you become more active.

Relaxation, meditation, imagery, hypnosis, distraction, strong beliefs or faith, and biofeedback are strategies that increase the tolerance to pain. Getting involved in work or social activities, joining a support group, or even having a good laugh are techniques that can minimize pain. Interesting to note, higher pain severity is reported by people with MS who are unemployed or homebound. Physical agents work to enhance or limit pain transmitters and include the application of heat, cold, or pressure, physical therapy, exercise, massage, acupuncture, yoga, tai chi, and transcutaneous electrical nerve stimulation (use of electric current to stimulate nerves for therapeutic purposes).

Medication treatment of neurogenic pain is aimed at changing the crazy nerve firing. Drugs used for epilepsy help make nerve cell walls tight and stable. These also stop the wild nerve firing. Drugs for depression are used because the “feel good” neurotransmitters in your brain ease the perception of pain. The use of opioids remains controversial in MS pain management. Opioids or narcotics are considered when other agents become ineffective or not well tolerated. Narcotics may help you escape pain but can take away choice and true control over pain.

In summary, pain is a symptom that demands serious and ongoing attention, as it has such a pervasive impact on daily living. MS pain management is an achievable goal that integrates behavioral, emotional, and physical strategies as well as medications. The goal of pain management is to optimize mood, sleep, and quality of life. While MS pain is yours to own and ultimately you are the one to understand and make a difference in the pain experience, this is not something you need to do alone. Among many, your doctor, nurse, pain psychologist, physical therapist, spiritual advisor, friends, and significant other are there to help.