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Home , Bone pain, Feeling, Neck pain, Neuralgia, Toothache

THE BASIC FACTS

MULTIPLE SCLEROSIS

CAROLE DIAGNOSED IN 2005

“It hurts to walk. It feels like a huge ball A volunteer for the Society said she has pressing against the heel of my foot.” That’s that tighten her leg muscles and exhaust her. how a former office manager describes the Another man described his leg pain as feeling feeling. She also feels an awful tightness “like a .” His pain was worse at around her knees when she’s down, night and when the weather changed. so much so that she gets up to move All these comments came from just one MS around, only to have the heel pain kick in. clinic, in Philadelphia. Hot, prickling pain around the waist Clearly, pain syndromes are not uncommon bothers a practicing architect. A retired in MS. In one study, 55 percent of the Head Start nurse has pain in her shoulders people studied had what is called “clinically and that began about a year ago, six significant pain” at some time during the years after she was diagnosed. “It’s a dull, course of a lifetime with MS. Almost half achy feeling that’s pretty much continuous, (48 percent) were troubled by . but worse in the morning.”

Pain | 1 This study suggested that factors such as age serves no useful purpose. It robs sleep, saps at onset, length of time with MS, or degree energy, dampens , and curbs appetite. of disability played no part in distinguishing In some chronic pain conditions, the constant the people with pain from the people who barrage of pain signals sensitizes the were pain-free. The study did indicate that central nervous system (the brain and spinal twice as many women as men had pain as cord) so much that every pain is intensified part of their MS. and even a light touch can hurt. If you feel pain, it’s important to According to Dr. Stanley van den Noort, communicate that information to your chair emeritus of the National MS Society’s physician. Describe the symptoms and Medical Advisory Board, it’s common for their degree of severity as clearly as possible people with MS to have a relatively high because treatments vary. And treatment is pain threshold. essential. Treatment can help prevent pain “Many are not unusually sensitive, until from taking over a person’s life. their pain becomes very severe. Then in Pain that occurs as a result of nervous system spreads or refers into other areas,” he said. disease is different from the “good” pain For example, he has seen patients who feel that serves to protect the body from further the prick of a pin in the foot as a severe injury. There are nerve endings sensitive to pain in the shoulder. pain all over the body that sound an alarm Pain in MS may be unusual in other ways. to the brain when something is harming The central nervous system normally turns or about to harm it. The brain normally off many sensations from the body. As Dr. responds so quickly that a person has van den Noort explains, “I don’t feel the already withdrawn the fingers from the hot socks on my feet while I’m talking to you.” stove top before realizing consciously what But this blocking mechanism may be affected happened. This is functional pain at work, by MS damage, allowing information to pre-venting severe injury. flood in, and pain to result. In more serious events, such as a sprained Often there is no simple association between ankle or a broken , pain sounds the location and number of MS lesions a general alarm designed to make the (damaged areas in the brain or spinal cord) individual rest and let the body heal. This, and the kind of pain the person is experiencing. too, is functional pain, pain with a purpose. But no matter how odd MS pain may be, it In contrast, “chronic” or recurrent pain is real pain, and causes real , which — especially pain that occurs because of in turn can lead to . Steps should disease or injury of the nervous system — be taken to relieve it.

Pain | 2 use because this pain comes so suddenly. What to do A soft collar to limit neck flexion may be prescribed. First, it’s important for you and your primary- care doctor to distinguish between MS pain Burning, aching, or and other kinds of pain. Having MS doesn’t make you immune to , cramps, “girdling” around the body arthritis, or low . In arriving at a These sensations, called dysesthesias, diagnosis, you and your doctor will need to are all neurologic in origin. These consider the nature and source of your pain. are sometimes treated with According to Dr. Randall Schapiro, director (Neurontin®) or with such of the Fairview MS Center in Minnesota, as amitriptyline (Elavil®) because such “The number one requirement for effective agents modify how the central nervous pain control is a proper diagnosis.” system reacts to pain. Other treatments include wearing a pressure stocking or glove, which can convert the sensation Several sources and of pain to one of pressure; and warm compresses to the skin, which may convert types of pain in MS the sensation of pain to one of warmth.

Acute pain Chronic pain Trigeminal is a stabbing pain in Burning, aching, prickling, or “pins and the that can occur at any time during needles” may be chronic rather than acute. MS, even as an initial symptom. While it The treatments are the same as for the acute can be confused with dental pain, this pain dysesthesias described above. is neurologic in origin. It can usually be treated successfully with medications such as Pain of spasticity gabapentin (Neurontin®) or carbamazepine (Tegretol®). In severe cases that do not respond This pain category has its own subcategories. to medication, a surgical procedure called Muscle spasms or cramps, called flexor spasms, can be performed. This procedure may occur. Treatments include medications severs the nerve roots that carry sensation. such as baclofen (Lioresal®), tizanidine (Zanaflex®), or other agents. Treatment also “Lhermitte’s sign” is a stabbing, electric includes regular stretching and shock-like sensation running from the back balancing water intake with adequate sodium of the head down the spine, brought on and potassium, as shortages in either of these by flexing the neck. Medication is of little minerals can cause muscle cramps.

Pain | 3 Tightness and aching in the joints are other manifestations of spasticity, which generally Treatments for pain respond well to the treatment described above. The chart on pages 7–8 lists typical pain Chronic back and other problems and the approaches most often used to deal with them. But getting pain musculoskeletal pain under control is not a cut and dried procedure. This can have many causes in MS. Pressure on the body caused by immobility, incorrect use of mobility aids, spasticity, stress on Complementary the body from the struggle to compensate for walking problems, may all contribute treatments to musculoskeletal pain. An evaluation to pinpoint the problem is essential. Medication in combination with alternative Treatments may include heat, massage, therapies, such as biofeedback, hypnosis, ultrasound, , and treatment yoga, meditation, or acupuncture improve for spasticity. relief for many. Even if pain responds reasonably well to medication, therapies such as massage, , humor, music, and distraction can improve pain control Pain and and of life. the Pain can be intensified by the that it is When pain keeps associated with a worsening of the disease. MS specialist, Dr. Jack Petajan of the coming back University of Utah, said, “The severity of pain, and its location and extent, bear very little A multidisciplinary pain clinic may be relationship to the extent or seriousness indicated for chronic disabling pain. In of the multiple sclerosis. To feel pain is a severe cases, some pain specialists prescribe fearful , and it is common for opiates, such as methadone. The difficulty people with multiple sclerosis to interpret with narcotics is that people tend to their pain as a serious deterioration of their become tolerant of their effects and need condition. In general, this is not the case.” increasing doses.

Pain | 4 centers within the brain. At the molecular Self help level, pain researchers can now distinguish certain cells that transmit the normal People who stay active and maintain positive “good” pain signals from the cells that are attitudes often seem to be able to reduce the prominent in chronic pain. impact of their pain. They also experiment with home remedies. Indeed, it is characteristic of many people with MS to IMPROVING SELF REPORTS look for ways to help themselves and to take action to reduce their pain. You have the right to have your pain treated. It is your responsibility to The retired Head Start nurse finds using a communicate where and how much loofa sponge and massaging with a soft ball pain you have to your healthcare of plastic netting helps relieve her shoulder provider. Self report is the single most and . The Society volunteer works important piece of pain assessment. out with a personal trainer to ease her painful To improve your self reports, watch leg spasticity and keep her muscles in shape. for pain triggers. Notice things that Another woman reported that she feels less make your pain worse such as certain movements, fatigue, or worsening of pain after taking a nap, riding her stationary other MS symptoms. Rate your pain bicycle, swim-ming in cold water, or doing on a scale of zero to 10 (with zero = no stretching exercises with her physical therapist. pain, and 10 = worst pain). As you rate “When I’m doing something I like, the pain the pain, note any activities, time of doesn’t go away, but I don’t think about it as day, where you are, and who you are much,” she added. with. Describe the pain (sharp, achy, stinging, etc.) and what you did about it. Chapters of the National MS Society may be able to refer callers to area pain It is wise to know what medications you are taking, and to learn the names clinics or specialists and complementary and the side effects. Ask about the best therapy practitioners. See the last page for time to take each one and what it is additional resources. expected to do for you. Be an advocate in your own pain man- Research on pain agement. Always remember that pain is what the person experiencing the MRI and newer imaging and microscopic pain says it is. This will help you and technologies have been a boon to your healthcare provider treat your pain research, revealing the wide-spread pain appropriately. distribution of pain pathways and pain

Pain | 5 Investigators are tracking each step in the medically unwise because the toxic effects chemical chain that begins when a molecule appear to exceed those associated with makes contact with a receptor on a nerve tobacco smoking. cell membrane and ends with signals inside Oral cannabis oil or synthetic THC pills the cell directing specific genes in the cell’s appear to have benefits on pain. Whether nucleus to turn on or turn off. the positive effects that patients reported With each new pain molecule or gene resulted from a specific chemical effect of discovery comes the potential for developing cannabinoids or a heightened “placebo” a drug that might selectively target that effect cannot be determined from this study molecule and sup-press pain. The more because unpleasant side effects allowed the selective the target, the less likely are majority of participants to recognize that undesirable side effects like constipation, they were taking the active drug. Also, the nausea, or sedation. study provided no quantitative information about the extent of the pain relief. Newer pain-relieving drugs, such as the anticonvulsant gabapentin, are signs of the The Academy of ’s Evidence- progress taking place. Other pain relievers Based Guideline (2014) for Patients now being tested include drugs that act on and Their Families on Complementary a class of nicotinic receptors (the receptor and Alternative Medicine for Multiple that reacts to tobacco) and a drug that Sclerosis reviewed the data from available selectively blocks a gate that opens when a studies of several different forms of medical pain nerve cell fires an impulse. marijuana. The Guideline reported that oral cannabis extract — a pill form of Research on marijuana cannabis — reduces people’s self-reports of spasticity and pain caused by spasticity. The largest clinical trial of marijuana Synthetic tetrahydrocannabinol (THC) derivatives for the treatment of MS — another pill form of cannabis — may symptoms was published in Lancet also reduce self-reports of spasticity. The (2003, 362: 1517-26). These results Guideline found insufficient evidence to showed that oral derivatives of marijuana determine whether smoking cannabis is safe do not provide objectively measured or effective for treating any MS symptoms, improvement in spasticity but they including pain. See aan.com/Guidelines/ confirm prior suggestions that patients Home/GetGuidelineContent/642. using marijuana felt better in ways that could not be measured by their physicians. The long-term effects of oral cannabinoids are not yet known and their use in many It is essential to note that this study did not states remains illegal. The available data provide information related to the use of will be useful in the ongoing debate on the smoked marijuana. Smoking marijuana is value of marijuana derivatives for MS.

Pain | 6 and respiration — taken during a standard The fifth vital sign physical exam. New facts about chronic pain and its Acknowledging that pain should be consequences are sparking general changes in documented and treated is a major step how physicians will practice medicine. The in changing the common belief that pain Department of Veterans Affairs has begun is “all in your head” or the attitude that a major initiative asking VA physicians to people who complain of pain are weak, record pain level as “the fifth vital sign” for depressed, want , or worse, just every patient. An inquiry about pain will want drugs. This change in attitude comes be added to the traditional four vital signs at a time when the prospects for better — temperature, blood pressure, and heart pain treatments are also improving. Table 1 Types of pain Characteristics Treatment Trigeminal Excruciating, sharp, shocklike • Carbamazepine, gabapentin, Neuralgia pain in cheek and , lamotrigine, misoprostol, lasting seconds to minutes; phenytoin, baclofen (medications may be triggered by speaking may be combined) or a touch. • Surgery, as last resort: rhizotomy or nerve ablation (removal) Tonic Spasms Brief muscle twitching or • Same medications as above sudden, sharp muscle ; may also burn or tingle. Paroxysmal Painful burning, aching, or • Same as above and amitriptyline, Limb Pain itching of any part of the body clonazepam, diazepam but more common in the legs. • Application of heat and cold (some MS specialists avoid using heat) • ointment • Pressure stockings (some MS specialists recommend using pressure stockings and some do not) , tension, or cluster • Treatment determined headache types. by type of headache Optic Ice-pick like eye pain. • Intravenous methylpred-nisolone, nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen

Pain | 7 Table 1 (continued)

Types of pain Characteristics Treatment

Dysesthetic Chronic burning, tingling, • Same as for paroxysmal limb Extremity Pain tightness, or pins-and-needles • Dull aching pain responds best to feelings; a dull warm aching; tricyclics such as amitriptyline worse at night and after , • May require maximum dosing aggravated by temperature and weather. Spasms Muscle cramping, pulling, • Stretching exercises and pain. • Baclofen, botulinum toxin, tizanidine, dantrolene, intrathecal baclofen Musculo- Caused by the physical stress • Stretching exercises Skeletal Pain of immobility. Physician should • Posture & gait evaluation; first rule out spinal disc disease. gait aids, orthotics • Exercise (esp. swimming) to increase strength and flexibility • NSAIDs such as ibuprofen • Proper seating, position changes, support and cushioning • Application of heat and cold Iatrogenic Pain Pain caused by MS treatment, • Discuss problems with your such as steroid-induced healthcare provider; treatment , interferon side- may involve changing medication effects, injection site reactions. Secondary Pain Pain associated with pressure • Treating the cause usually of MS symptoms sores, stiff joints, muscle alleviates the pain. contractures, urinary retention, • Physician should assess for urinary tract , other depression. .

Pain | 8 Additional Additional information pain resources

An MS specialty center (call your chapter for a referral.) National Chronic Pain Outreach Association (NCPOA) American Chronic Pain PO Box 274, Millboro, VA 24460 Association (ACPA) Tel: 540-862-9437 Fax: 540-862-9485 PO Box 850 Email: [email protected] Rocklin, CA 95677-0850 Website: www.chronicpain.org Tel: 800-533-3231 Fax: 916-632-3208 Email: [email protected] Mayday Fund (For Pain Research) Website: www.theacpa.org c/o SPG, Christina Spellman, Executive Director 127 West 26th Street, Ste 800 Association National Office New York, NY 10011 Email: [email protected] 925 NW 56th Terrace, Ste C Website: www.maydayfund.org Gainesville, FL 32605-6402 Tel: 352-331-7009/800-923-3608 American Pain Foundation Fax: 352-331-7078 Website: www.tna-support.org 201 North Charles Street, Suite 710, Baltimore, MD 21201 Tel: 888-615-PAIN (7246) Email: [email protected] Website: www.painfoundation.org

National Foundation for the Treatment of Pain PO Box 70045 Houston, TX 77270-0045 Tel: 713-862-9332 Fax: 713-862-9346 Email: [email protected] Website: www.paincare.org

Pain | 9 For further reading * The National Multiple Sclerosis Society is proud to be a source of information about multiple The Society publishes many other pamphlets sclerosis. Our comments are based on professional and articles about various aspects of MS. advice, published experience and expert opinion, Visit nationalMSsociety.org/brochures to but do not represent individual therapeutic download them, or call your chapter at recommendation or prescription. For specific information and advice, consult your personal 1-800-344-4867 to have copies mailed to you. physician. © 2016 National Multiple Sclerosis Society EG 0742

Lioresal is a registered trademark of Cibra Geigy Corp. Zanaflex is a registered trademark of Elan Pharmaceuticals Inc.

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