There are many lifestyle measures that have been shown to minimize or even correct the symptoms of multiple sclerosis, including avoiding extreme temperatures to reduce heat sensitivity and starting an exercise program to build strength and flexibility. You may also need to adapt to living with disability; many assistive devices are available to help you live independently. Ideally, the multiple sclerosis treatment team includes occupational therapists, social workers, and others who can help people with MS adapt to living with the disease.
One of the greatest challenges of MS is the unpredictability and uncertainty of what is to come. A good plan for coping with your concerns about the future is to:
- Educate yourself about possible changes.
- Work with your doctor and other healthcare professionals to manage your symptoms.
- Communicate openly with your family and others.
- Keep your life satisfying and fulfilling.
This section contains more information on:
- Coping with MS
- Avoiding extreme temperatures
- Physical therapy
- Assistive devices
- Daily activities
- Vocational rehabilitation
- Counseling and support groups
- Cognitive changes
- Sleep problems
- Alternative and complementary therapies
When you get an illness like bronchitis or the flu, you know you will be feeling better and functioning normally within a week or so. A chronic illness, such as multiple sclerosis, is different. It will never go away and can disrupt your lifestyle in many ways.
Pain and fatigue might become a frequent part of your day. Physical changes might occur and affect the way you walk and other ways you move. You may need to use ambulation devices to get around. These changes might diminish your positive self-image. When you don't feel good about yourself, you might prefer isolation, and withdraw from friends and social activities.
Multiple sclerosis can also influence your ability to function at work. Morning stiffness, decreased range of motion, and other physical limitations might require you to modify your work activities and environment. Decreased work ability can lead to financial difficulties. For the homemaker, a specific task might take much longer to accomplish. You might need the help of your spouse, a relative, or a home healthcare provider. As your life changes, you might feel a loss of control and more anxious about the uncertainty of what lies ahead.
The most important step you can take is to seek professional help as soon as you feel less able to cope. Taking action early will enable you to understand and deal with the many effects of a chronic illness. Learning to manage stress will help you to maintain a positive outlook.
A mental-health-care provider can help you design a treatment plan to meet your specific needs. Strategies can be developed to help you regain a sense of control over your life. At times, if depression is present, medicines other than those treating the physical illness might be ordered to help lift your mood.
It might help to take control of the things in your life that you can, such as committing to spend time with your family, developing your spiritual self, trying out a new hobby, planning your finances, or working on adapting your home. Being proactive can provide a sense of well-being.
Avoiding extreme temperatures can be important, as heat or high humidity can cause people with MS to experience a temporary worsening of symptoms. Heat may cause nerves to conduct electrical signals even less efficiently. For reasons that are not well understood, extremely cold temperatures and changes in temperature can also cause MS symptoms, usually spasticity, to flare. It is recommended that people with MS avoid extreme temperatures, including hot baths, showers, and saunas. In hot and humid weather, attempt to stay cool and dry by using cooling equipment and drinking cool beverages. (For those with MS who don't have home air conditioning, a unit may be tax deductible.) If you do experience extreme temperatures, remember that adverse effects of extreme temperatures are temporary and do not produce permanent nerve damage.
Exercise can help ease the symptoms of MS, but it's important to take certain precautions if you want your exercise program to be successful. The most important thing to remember is not to overdo it. Check with your doctor before starting any exercises.
You might have heard the mottos "stretch till it hurts" or "feel the burn," but those approaches are not appropriate for people with MS. If you overdo it, you can end up straining an already compromised muscular system, increasing pain, and causing your body and mind to become overstressed, overworked, and overtired.
Check with your doctor before beginning any exercise program. He or she might make recommendations about:
- The types of exercise best suited to you and those you should avoid
- The intensity of the workout (how hard you should be working)
- The duration of your workout and any physical limitations
- Referrals to other professionals, such as a physical therapist, who can help create a personal exercise program that meets your needs. (The type of exercise that works best for you depends on your symptoms, fitness level, and overall health.) When starting physical therapy, it may be useful to call different providers and find a therapist who is experienced with neurological conditions such as MS.
Tips for safe exercise:
- Always warm up before beginning your exercise routine, and cool down at the end.
- If you plan to work out for 30 minutes, start with 10-minute workout sessions and work your way up.
- Work out in a safe environment. Avoid slippery floors, poor lighting, throw rugs, and other potential tripping hazards.
- If you have difficulty with balance, exercise within reach of a grab bar or rail.
- If at any time you feel sick or you begin to hurt, stop.
- The "two-hour rule" is a good guideline for people with MS when exercising. The rule states, "If you don't feel as good two hours after exercising as you did before you started, then you probably did too much."
- Select an activity that you enjoy, and have fun. Water aerobics, swimming, tai chi, and yoga are examples of exercises that often work well for people with MS.
Some people with MS are sensitive to heat, which means they notice that their symptoms either reappear or become worse when their body heat rises. This will happen when you exercise. Here are some tips to avoid overheating:
- Don't exercise during the hot time of the day (10 a.m. to 2 p.m.). Try to exercise in the morning or evening if you are exercising outside.
- Drink plenty of cool fluids.
- Become aware of your body. If you notice any symptoms that you didn't have before you began exercising, slow down or stop exercising until you cool down.
- Swimming and water aerobics are good exercise options to keep you cool while exercising. Ask your pool manager about the temperature of the water. Ideally, it should be between 80 and 84 degrees. Also, make sure that there are non-slip floors in the locker room and around the pool.
- Cooling vests are available from many MS organizations. These can be worn to help you stay cool during exercise—or even to help you stay comfortable when you're outside on a warm day.
Physical therapy can help people with multiple sclerosis compensate for imbalance, lack of coordination, fatigue, pain, heat intolerance, immobility, and weakness. A physical therapist may offer new movement techniques, strategies, and equipment. Exercises, which can be performed at home, can strengthen and loosen muscles to improve quality of life, relieve pain, and maintain independence.
The goal of physical therapy is to enhance your independence and quality of life by improving movement and function and by relieving pain. Physical therapy can help with:
- Balance or walking problems
- Stiffness or "spasticity"
- Difficulty performing daily activities (such as walking or getting up from a sitting position)
Multiple sclerosis damages the myelin sheath surrounding the nerve cells of the brain and spinal cord. Scarring from this damage can block or slow nerve impulses in areas of the brain (neurological damage). As a result, you may lack coordination, feel tired, have involuntary movements, resist movement (spasticity), and have pain. Symptoms such as these, which are a result of MS, are called "primary symptoms."
Physical therapy cannot cure primary symptoms because, at this time, neurological damage cannot be reversed. Physical therapy can be helpful by providing "compensatory" treatments. These treatments enable you to compensate for the changes brought about by MS. Compensatory treatments include mastering new movement techniques, strategies, and equipment.
Primary symptoms can make you move less. As a result, you may feel tightness, pain, and weakness, especially in the muscles and joints. These symptoms, which are not a result of MS, are called "secondary symptoms." Physical therapy can be very helpful at lessening and even stopping secondary symptoms of MS. A physical therapist can teach you exercises you can use to strengthen and stretch muscles. Many of these exercises can be performed at home.
If you feel you can benefit from physical therapy, you will need to ask your physician for a referral to physical therapy.
The number of appointments depends on your specific situation. The first appointment includes an evaluation and recommendations for exercises. The following appointments check your progress and build a new program. The therapist will work with you until you reach a certain level of improved function. At that point, a home exercise program will be developed.
There are a variety of assistive devices that can help you manage the symptoms of multiple sclerosis. An assistive device is a tool or product that makes a certain function easier to perform. Assistive devices are usually prescribed by an occupational or physical therapist after a referral by your physician.
Foot orthotics. Foot orthotics are lightweight supports worn inside the shoes that can be used to increase stability and decrease fatigue. They can help with spasticity in the foot and can help brace the foot if you are having difficulty with a flat foot or an excessively arched foot. Foot problems such as these need to be addressed because they can cause abnormal walking patterns that can lead to pain in the knees, hip, or lower back.
Lower-leg braces or ankle foot orthotics (AFOs). Weakness of the leg muscles may make it more difficult to maneuver on stairs, rise from a chair, or walk. Bracing or other aids may be recommended. An AFO can stabilize the ankle when there is weakness in the foot muscles. The AFO can help control "foot drop" (in which the toe of the shoe scrapes the ground as you walk). There are new materials for these braces that are extremely lightweight. This brace fits into an ordinary shoe.
Neck brace. If muscle weakness occurs in the neck, a neck brace may be recommended to make you more comfortable.
Canes. A cane may be the most useful tool when one leg is weaker than the other or when there are mild problems with balance. Here are some guidelines for cane use:
- The cane is held on the stronger side of the body while the weight is shifted away from the weaker side.
- A quad cane (or four-legged cane) provides more stability than a standard cane.
Walkers. Walkers may be more appropriate when there is significant leg weakness. They can also provide support for maintaining balance. Wheels or platforms can be added to the walker if necessary.
Rollators. These walkers move on four wheels so they don't have to be lifted, which helps conserve energy. They also feature a seat and brakes, so if the user becomes tired, he or she may sit and rest.
Wheelchairs or scooters. Wheelchairs or three-wheeled scooters may provide more independence. Wheelchairs are usually recommended when a patient experiences excessive fatigue, unsteadiness, or occasional falls.
Because activities of daily living—including leisure activities—can cause you to become fatigued much more quickly, and because mobility can be decreased in people with multiple sclerosis, it's important to modify your activity levels. These tips might help you learn to function more independently and successfully.
This section discusses the most common recommendations that can assist individuals with physical limitations due to MS in the following areas:
- Toileting and general self-care
- Eating and drinking
- Working in the kitchen
- Cleaning and shopping
- Other tips
Not all of these recommendations might benefit your personal situation. Your occupational therapist or rehabilitation specialist can help determine which of these recommendations is best for you.
Tips to make dressing easier include:
- Get dressed while sitting in a chair that has armrests. This will help you keep your balance. It is recommended to dress the weaker extremity first since the stronger extremity usually has greater range of motion.
- Roll from side to side to get pants over your hips. You can do this while sitting in a chair or lying down on your bed.
- Wear clothes that are loose fitting and have elastic waistbands.
- Choose wraparound clothing instead of the pullover type. Also, choose clothing that opens in the front, not the back.
- Wear clothing with large, flat buttons, or use Velcro closures.
- Use a button hook to button clothing.
- If you have shoulder weakness, use a dressing stick to get your coat or shirt on or off. If seated, place the sleeve opening of the shirt or coat of your weaker arm between your legs and place your arm in the sleeve. Next, pull the sleeve over your weaker arm up to your shoulder, then pass around back to dress your stronger arm.
- Use a zipper pull or attach a metal ring on the end of the zipper to zip pants or jackets.
- Use devices such as a sock aid and long-handled shoehorn for additional assistance.
- Wear slip-on shoes instead of lace-up footwear.
Tips to make bathing easier include:
- Install grab bars inside and outside the bathtub or shower.
- Use a bathtub transfer bench or a shower chair with a back support.
- Put extended lever handles on faucets to make them easier to turn.
- Put a non-skid mat in the bathtub.
- Use a hand-held hose for showering and bathing.
- Use a long-handled sponge or scrubbing brush.
- Use soap on a rope, bath mitts or sponges with soap inside, or a soft soap applicator instead of bar soap.
- Use lukewarm water, as very hot water can cause fatigue.
- Sew straps on towels to make them easier to hold while drying.
- Place a towel on the floor outside the tub to dry your feet so you don't slip.
- Put a towel on the back of your chair and rub your back against it to dry. Or, use a terry-cloth robe instead of a towel to dry off.
Tips to ease these daily functions include:
- Use an elevated toilet seat with armrests and/or safety rails to assist standing from a low surface.
- Do not use towel racks or bathroom tissue holders to help you stand.
- Put extended lever handles on faucets to make them easier to turn.
- Use hairbrushes and combs with built-up handles or handles with finger loops.
- Use toothbrushes with built-up handles, or use an electric toothbrush.
Tips to make eating and drinking easier include:
- Rest your elbows on the table to provide more motion at your wrist and hand. Wrist supports may help.
- Sit with your knees and hips bent at a 90-degree angle in a straight-back chair.
- Use utensils with built-up, lightweight handles, or use a "spork"—a spoon and fork in one. Use a rocker knife for cutting food.
- Use a non-skid mat (made out of a material called Dycem) to stabilize objects on the table.
- Use a plate guard or plate with a raised lip to prevent food from spilling.
- Use a long straw with a non-spill cup, or use a plastic mug with a large handle.
Tips to make working in the kitchen easier include:
- Have at least one counter work space that has been lowered so that you can reach it from a sitting position.
- Use a jar opener for tightly sealed containers.
- Don't close jar lids or containers too tightly once they have been opened.
- Use an extended lever to assist with lift-tab cans.
- Use pans with a wide base that cannot be knocked over easily.
- Use a food processor for vegetable cutting and peeling.
- Use plastic containers to avoid breakage.
- Use a non-skid mat (made out of a material called Dycem) to stabilize bowls and plates. A piece of rubber kitchen-drawer liner works as a non-skid surface also.
- Store food and beverages (such as milk or juice) in small, easy to manage containers.
- Place utensils, pots, pans, and measuring cups on a pegboard or in an accessible cupboard instead of in lower cupboards that require bending. Sit when getting things out of lower cupboards.
- Use a spike cutting board to stabilize vegetables and fruit so you have both hands free to peel or chop them.
- Use two hands to pour liquids.
- Use scissors to open cellophane packages and a box-top opener to open boxes.
- Use electrical appliances whenever possible, including a microwave oven and an electric can opener.
Tips to make cleaning and shopping easier include:
- Use long handles on sponge mops, cleaning brushes, dustpans, brooms, or window washers.
- Sit to fold laundry, wash dishes, iron clothes, use the sweeper, mop the floor, or plug in appliances at low outlets. Adapt counters so that you can reach them from a wheelchair or from a sitting position.
- Call ahead to make sure the store has the item you need.
- Call ahead to reserve a wheelchair or tri-wheel cart if you aren't planning to bring your own.
- Call a taxi or ask a friend or family member to drive you.
Some other ways to make your life easier:
- Always keep emergency numbers in an accessible location. Consider having them preset on your speed dial.
- Use telephones with oversize buttons.
- Do not keep throw rugs on the floors, to avoid slipping or tripping on them.
- Special grips for pens and pencils may make writing easier.
- You may wish to get an electric bed that will move to help you get up.
Make your environment as comfortable and sensory pleasing as possible. Decorate with colors you find soothing; use scented candles or potpourri in fragrances that relax you. Keep photos and music around that uplift your spirit. If you find you would like company during the day, consider a pet such as a bird, fish, or cat. If you are concerned about daily care, surround yourself with plants or flowers. Make sure the temperature and climate are suitable to your sensitivities. The more comfortable and uplifting your environment is, the more positive your attitude will be.
A satisfying work life is as important to the person with multiple sclerosis as it is to anyone else. For people with MS, finding work that matches their skills, interests, and abilities can be especially challenging.
Vocational rehabilitation services can assist patients with:
- Recognizing their skills and abilities
- Exploring new careers
- Locating jobs
- Preparing for interviews
- Developing safe work sites
- Coping with work-related issues
Assessing the needs of the patient is the first step in vocational rehabilitation. Information from the assessment helps the patient and counselor make the best use of vocational services. During the initial interview, a counselor reviews the patient's educational, work, and medical histories and assesses any factors that may affect the patient's ability to work. After the consultation, the patient may be referred to other hospital services or community resources.
Vocational evaluation tests the person's transferable skills to assess:
- Vocational interests
- Strengths and limitations
- General abilities
- Specific needs and interests
Career exploration introduces patients to the many resources available for making career choices. The patient can:
- Review labor market data
- Clarify his or her aptitudes and abilities (based on vocational evaluation)
- Research career interests
- Identify occupational preferences
- Set vocational goals
A vocational rehabilitation counselor provides support and guidance throughout the decision-making process. Individual and group counseling helps the patient cope with issues related to returning to work, including:
- Adjustment to disability
- Fear of change
- Clarification of functional limitations
- Factors affecting motivation and benefits of working
- Employer and worker expectations
- Writing résumés and cover letters
- Job interviewing
- Job accommodations (Americans with Disabilities Act)
A patient can be observed at work while performing specific duties to determine whether he or she can safely perform a job. The counselor may then recommend modifying job duties or the work site to improve safety.
Those with severe disabilities can benefit from job coaching performed with support from outside community agencies. Some workers require assistance on the job to learn procedures, organize and prioritize tasks, and meet productivity standards. A job coach works closely with the worker to set up duties in an effective way, based on the worker's overall vocational strengths and limitations. Your physician can refer you to the local Bureau of Vocational Rehabilitation Services to address these issues and/or identify and provide training for a different job if you are unable to return to your former job.
Healthy eating is important for everyone, but it is particularly important if you have a chronic illness, such as multiple sclerosis. Good nutrition, especially adequate calories and protein, helps maintain your body's store of protein, provide energy, heal wounds, and fight infection.
Some basic nutrition guidelines for people with MS:
- Eat a variety of foods from each food group.
- Maintain your weight through a proper balance of exercise and food.
- Choose foods low in saturated fat and cholesterol, unless otherwise directed by your healthcare provider.
- Try to limit how much sugar you eat.
- Moderate your use of salt.
- If you choose to drink alcoholic beverages, do not consume more than one or two beverages per day. (Always consult with your doctor about alcohol consumption.)
- Drink eight 8-ounce glasses of water per day.
- Limit caffeine consumption.
Fatigue is often confused with tiredness. Tiredness happens to everyone. It is an expected feeling that occurs after certain activities or at the end of the day. Usually, you know why you are tired, and a good night's sleep solves the problem.
Fatigue is a daily lack of energy, an unusual or excessive whole-body tiredness that is not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one month to six months or longer). Fatigue can prevent a person from functioning normally, and it has an impact on a person's quality of life.
The best way to combat fatigue is to treat the underlying medical cause. Unfortunately, the exact cause is often unknown, or there might be multiple causes.
Good nutrition and exercise can combat fatigue. Fatigue is often made worse if you are not eating enough or if you are not eating the right foods. Maintaining good nutrition can help you feel better and have more energy. Diminished physical activity, which might be the result of illness or of treatment, can also lead to tiredness and lack of energy. Scientists have found that even healthy athletes forced to spend extended periods in bed or sitting in chairs develop feelings of anxiety, depression, weakness, fatigue, and nausea. Regular, moderate exercise can limit these feelings, help you stay active, and increase your energy. Clinical studies have found that routine exercise (30 or more minutes, three or four times a week) can decrease fatigue in patients with MS.
Although MS-related fatigue is a common and often expected symptom, you should feel free to mention your concerns to your healthcare providers. There are times when fatigue might be a clue to an underlying medical problem. Other times, medical interventions might assist in controlling some of the causes of fatigue. Finally, your healthcare providers might offer suggestions more specific to your situation that would help in combating your fatigue.
This section contains more information on what you can do to manage fatigue.
Evaluate your level of energy. Think of your personal energy stores as a "bank." Deposits and withdrawals have to be made over the course of the day or the week to balance energy conservation, restoration, and expenditure. Keep a diary for one week to identify the time of day when you either are most fatigued or have the most energy. Note what you think might be contributing factors.
Be alert to your personal warning signs of fatigue. Fatigue warning signs might include tired eyes, tired legs, whole-body tiredness, stiff shoulders, decreased energy or a lack of energy, inability to concentrate, weakness or malaise, boredom or lack of motivation, sleepiness, increased irritability, nervousness, anxiety, or impatience.
Other people can play a role in living with your fatigue. Family and friends can be helpful if they can "put themselves in your shoes" and understand what fatigue means to you. Support groups can be a source of comfort as well. Other people with MS understand what you are going through.
Activities that divert your attention away from fatigue can also be helpful. For example, knitting, reading, and listening to music require little physical energy but require attention.
These steps may help you conserve your energy:
1. Plan ahead and organize your work.
- Change storage of items to reduce trips or reaching.
- Delegate tasks when needed.
- Combine activities, and simplify details.
- If possible, plan your schedule a week in advance to make sure your workload is balanced throughout the week. The goal is to avoid being overloaded on some days.
2. Schedule rest.
- Balance periods of rest and work.
- Rest before you become fatigued. Frequent, short rests are beneficial.
3. Pace yourself.
- A moderate pace is better than rushing through activities.
- Reduce sudden or prolonged strains.
- Alternate sitting and standing.
4. Practice proper body mechanics.
- When sitting, use a chair with good back support. Sit up with your back straight and your shoulders back.
- Adjust the level of your work. Work without bending over.
- When bending to lift something, bend your knees and use your leg muscles, not your back, to lift. Do not bend forward at the waist with your knees straight.
- Carry several small loads instead of one large one, or use a cart.
5. Limit work that requires reaching over your head.
- Use long-handled tools.
- Store items as close to waist level as possible.
- Delegate tasks whenever possible.
6. Limit work that increases muscle tension (isometric work).
- Breathe evenly; do not hold your breath.
- Wear comfortable clothes to allow for free and easy breathing.
7. Identify the effects of your environment.
- Avoid extremes of temperature.
- Eliminate smoke or harmful fumes.
- Avoid long, hot showers or baths.
8. Prioritize your activities.
- Decide which activities are important to you and what could be delegated.
- Use your energy for important tasks.
Stress refers to two different things: situations that trigger a reaction (physical and/or emotional) and the reaction or response to those triggers. Each individual's experience of stress depends on the nature of the stressor and how the stressor is perceived.
Having a chronic illness can cause and influence stress. MS is no exception. Individuals with MS have the difficult challenges of dealing with:
- The uncertainty of diagnosis (before MS diagnosis, living with symptoms and no diagnosis)
- The unpredictability of the disease
- The emergence of symptoms (having visible signs of the disease, such as the need for a cane or wheelchair)
- Concerns about finances and job situation
- Dependence on others and not being able to care for others (such as a spouse and children) as before
- The need to modify activities and surroundings to accommodate changes due to MS
- Symptoms that are unexplainable and not understandable
Responses to stressors include physical changes and emotional and behavioral responses.
Emotional warning signs
- Irritability and anger
- Inability to remember, concentrate, and make decisions
- Unproductive worry
- Sadness and depression
- Frequent mood swings and tearfulness
- Feeling overwhelmed
- Losing your sense of humor
Physical warning signs
- Sweaty palms, cold fingers
- Chronic fatigue
- Difficulty falling or staying asleep
- Muscle tension and discomfort, especially in the head, shoulders, neck, and back
- Weight gain or loss
- Heart palpitations
- Indigestion, heartburn
Behavioral warning signs
- Overreacting, short fuse
- Acting on impulse
- Using drugs or gambling
- Using food, tobacco, or alcohol excessively
- Inappropriate shopping
- Withdrawing from relationships
- Workaholism or absenteeism
To reduce stress:
- Keep a positive attitude.
- Accept that there are events that you cannot control.
- Be assertive instead of aggressive. "Assert" your feelings, opinions, or beliefs—showing respect for yourself and others—instead of becoming angry, combative, or passive.
- Learn relaxation techniques.
- Exercise regularly. Your body can fight stress better when it is fit.
- Eat well-balanced meals.
- Rest and sleep. Your body needs time to recover from stressful events.
- Don't rely on alcohol or drugs to reduce stress.
- Set goals that are specific, measurable, attainable, relevant, and time-based so you don't put them off.
- Add positive, trustworthy, and encouraging people to your support system.
If multiple sclerosis leaves you with less energy to accomplish tasks, you may need to adjust your expectations. For example, if you have a list of 10 things you want to accomplish today, pare it down to two and leave the rest for other days. A sense of accomplishment goes a long way to reducing stress.
There are a number of exercises that you can do to relax. These exercises include deep breathing, mind relaxation, imagery, meditation, yoga, and biofeedback. This section includes several examples of relaxation exercises.
Some relaxation exercises to try:
- Two-minute relaxation. Switch your thoughts to yourself and your breathing. Take a few deep breaths, exhaling slowly. Mentally scan your body. Notice areas that feel tense or cramped. Quickly loosen up these areas. Let go of as much tension as you can. Rotate your head in a smooth, circular motion once or twice. (Stop any movements that cause pain.) Roll your shoulders forward and backward several times. Let all of your muscles completely relax. Recall a pleasant thought for a few seconds. Take another deep breath, and exhale slowly. You should feel relaxed.
- Mind relaxation. Close your eyes. Breathe normally through your nose. As you exhale, silently say to yourself the word "one," a short word such as "peaceful," or a short phrase such as "I feel quiet." Continue for 10 minutes. If your mind wanders, gently remind yourself to think about your breathing and your chosen word or phrase. Let your breathing become slow and steady.
- Deep-breathing relaxation. Imagine a spot just below your navel. Breathe into that spot, and fill your abdomen with air. Let the air fill you from the abdomen up, then let it out, like deflating a balloon. With every long, slow breath out, you should feel more relaxed.
Relaxation techniques such as audiotapes that teach deep breathing or visualization can also help reduce stress. If your stress seems out of control, talk to one of your healthcare providers. They are here to help.
Counseling can be crucial in coping with this stressful disease. Counseling can help patients and families deal with depression, stress, and anxiety more effectively. Support groups are a very useful sharing experience. They provide an environment where you can learn new ways of dealing with your illness. You might want to share approaches you have discovered with others. You will also gain strength in knowing that you are not facing hardships alone.
Sometimes people have problems that are better addressed in a one-on-one setting. By participating in individual counseling, you may more effectively express sensitive or private feelings you have about your illness and its impact on your lifestyle and relationships.
About half of people with MS will experience some form of cognitive dysfunction, or impaired thinking. For most, this means slowed thinking, decreased concentration, or decreased memory. In only about 5 percent to 10 percent of MS patients is this so severe that it significantly impairs their ability to carry out daily living tasks.
Most of the time, difficulty with cognition occurs later in the course of the disease; however, there are times where it occurs much earlier, and occasionally it's present with the onset of MS.
The first signs of impaired thinking are often subtle and usually recognized only in retrospect and often by a family member or loved one. They include:
- Difficulty finding the right words to say
- Trouble remembering tasks
However, these difficulties are common with normal aging, so recognizing the appropriate cause can be challenging. If you are having cognitive difficulties, it's important that you discuss this with your doctor. First, your doctor will make sure that there isn't something other than the MS that is causing the problem, such as normal aging, a medication, or depression. If screening yields few clues, your doctor may recommend that you consult with a specialist who can test you to determine the nature of your cognitive difficulties.
Based on your test results, an occupational therapist, speech pathologist, or neuropsychiatrist may recommend a variety of exercises and techniques to help you better cope with your thinking problem. Rarely, thinking problems become so severe that the person needs constant care or can't live at home. If this becomes an issue for you or a loved one, discuss your options with your doctor.
During the past few years, numerous studies have examined ways to stabilize or improve cognitive dysfunction. Some of these studies looked at whether the MS disease-modifying drugs could slow the progression of changes in cognition. Results were mixed, with interferon beta-1a showing the most potential. Studies have also evaluated other treatments that may temporarily improve cognitive functioning. Medications used for Alzheimer's patients, including Aricept, may have a role here, but further research is needed.
Sleep disorders are conditions that prevent a person from getting restful sleep and, as a result, cause daytime sleepiness. There are about 80 different types of sleep disorders, and about 70 million Americans suffer from them. The inability to fall asleep or to stay asleep, called insomnia, is the most common sleep disorder.
Sleep disorders are usually not caused by the changes of multiple sclerosis, but many people with MS report insomnia or broken sleep patterns. Sleep problems with MS are not a result of the disease itself but can occur because of secondary factors such as stress, inactivity, or depression.
In general, certain kinds of sleep disturbances have recurrent patterns. For example, insomnia caused by depression might take two forms:
- A person will fall asleep in the evening with relatively little trouble. Several hours later, he or she will wake up and find it difficult to get back to sleep for the rest of the night.
- A person will fall asleep easily, then wake up like clockwork several hours later. From this point on, the rest of the night is spent tossing ad turning, with occasional rest periods.
Both of these sleep patterns are typical of depression and are not related to difficulty getting to sleep and general restlessness, which are more common when the person is inactive during the day.
Two other forms of sleep disturbances are caused by spasticity and the increased need to urinate during the night.
- Injury to the spinal cord makes some people with MS more likely to have nighttime spasticity, especially in the legs. Your doctor might be able to treat this symptom with medicines or a stretching regimen. Please discuss this with your doctor.
- For sleep disturbances caused by the increased need to urinate during the night, try reducing your fluid intake in the evening, and discontinue all caffeine after the midafternoon. Remember that it's still important to drink the recommended amount of fluids during the day. Also, go to the bathroom immediately before you go to bed. Your doctor might be able to treat this symptom with medicines. Please discuss this with your doctor.
Other types of sleep disorders unrelated to MS, such as sleep apnea, can also be seen in patients with MS. Your doctor can offer advice on whether a referral to a sleep center would be appropriate for you.
Improving Your Sleep
One of the most important ways to ensure a good night's sleep is to create a consistent bedtime routine. You can set the stage to fall asleep and stay asleep.
First, don't go to bed until you are tired. Prepare yourself for bed by wearing comfortable nightclothes, and then place your bed pillows in a comfortable position, turn off the lights, adjust the temperature in your bedroom, and position yourself comfortably in your bed. Now you are ready to listen to relaxing music, meditate, or drink a cup of warm tea.
Do you have sleepless nights and lie in bed until it seems like the sun is coming up? Get back up if you have not fallen asleep after 10 to 15 minutes. Find something to do that is relaxing to you, such as putting together a puzzle, reading, or writing a letter to a friend. Rather than watching TV, which is a passive activity, do something active so that natural tiredness can build up—although you should avoid physical activity when trying to become sleepy.
Remember that your bed is only for sleeping. Any of the above activities should be done in another room, not your bedroom. Return to the bedroom only when you feel tired.
These relaxation techniques can help you fall asleep or improve your sleeping patterns:
- Repetitive mental exercises. Close your eyes, and silently repeat a word or short phrase. Let your breathing become slow and steady. Repeat the phrase for 10 minutes until you feel more relaxed.
- Visualization. Imagine that you are in a peaceful environment, such as lying on a beautiful beach, relaxing and taking in the rays.
- Progressive muscle relaxation. You can mentally put each part of your body to sleep by tensing and relaxing your muscles. People with spasticity should be careful because this exercise could trigger muscle spasms.
As with any chronic illness, patients and their families are both affected by MS.
While nearly half of those diagnosed with MS will experience very little or no interference in their daily lives, MS can often cause unexpected and unwanted symptoms. Even minor symptoms can create disturbances in the lives of patients and their families. The extent to which these disturbances affect family functioning is often dependent on the family members' way of coping and their willingness to modify their usual coping styles. These family disturbances can involve:
- How everyone in your family gets along
- How you and your spouse treat each other
- How you and your spouse care for your children
- How you see yourself, and how your family members see their roles
- How other people react to you and your family
- How you work at home and at your job
- How leisure time is spent
- How your finances and family budgets are determined
- How everyone's personal needs are met
Adjusting to chronic illness is an ongoing process. Sometimes it involves a grieving period during which the entire family transitions to a new lifestyle. These periods of adjustment are not easy, but it is beneficial to face and deal with the illness and its changes. Psychologists have identified the phases of grief, including denial and isolation, anger, bargaining, depression, and finally acceptance. Keep in mind that there is no "right" or "wrong" way to grieve. These phases can occur in any order and vary in degrees of severity, one at a time or in combination. Allowing for the person with MS and his or her family to grieve is positive and, in time, leads to regrouping, rebuilding, and setting new goals together.
Other things you can do to help your family cope:
- Talk openly about your MS symptoms.
- Explain MS to those around you, including your children, extended family, friends, and coworkers.
- Set realistic expectations and goals.
- Get help, not only emotionally but also physically. If you are having trouble fulfilling certain tasks, ask for assistance.
- Learn more about community resources.
- Explore financial resources.
- Find new activities for you, your spouse, and your family to spend time together.
- Identify new ways to be intimate with your spouse if you are having emotional or physical difficulties with sexual activity.
- Work closely with your healthcare team, and stay educated about your illness.
- Reassure all family members that they are important.
This section contains more on:
Talking openly with your children about MS helps to relieve their anxiety about your health and their own well-being. Children of all ages are very intuitive and know when something is different or has changed. Talking with your children about your MS and the treatments you are undergoing will open the lines of communication and help reduce the fear and stress that come from the uncertainty of not knowing. When parents are reluctant to talk to their children about the disease, the children misinterpret silence as an indication that the problem is so bad that it cannot be discussed. Parents who can talk with their children about MS convey a message of trust, confidence, and strength.
When responding to questions and concerns, it is important to take into consideration a child's age and maturity level and not overwhelm the child with information he or she cannot understand. It might be helpful, at first, to talk with children individually. Therefore, you are able to tailor your discussion to a child's own level of understanding. When talking with your children, you might want to ask them how they would like to learn about MS—reading a book alone or with you, watching a video, or going with you to a doctor's visit.
Common questions children have:
Is MS hereditary?
—No. MS is not passed directly from parents to children, although it is possible for more than one family member to have MS.
Does everyone's MS get worse?
—No. Everyone's experience with MS is different. A person's MS can get better, worse, or stay the same.
Why is there no cure?
—The cause of MS is still not known. Scientists need to discover the cause first, and then they can work on developing a cure.
Emotions your children might feel:
Behaviors your children might exhibit:
- Increased concern with their own bodies and wellness
- Difficulty maintaining close friendships
- Higher anxiety and stress
- False maturity ("growing up too quickly")
- Bad behavior in public
- Lying to friends about your illness
- Regressive behavior (acting younger)
- Temper tantrums
- Waiting until you are tired at the end of day to ask for things (such as help with homework)
- Poor performance in school
- Nightmares, bed-wetting, and trouble falling asleep.
Beyond these behaviors, which in moderation are considered normal, your child might have additional difficulty coping with your illness. In some cases, you might want to seek professional help. Some warning signs of unhealthy behavior are:
- Severe or chronic behavior problems
- Sleeping difficulties and nightmares consistently for more than a month
- Loss of appetite or sudden increase of appetite
- Loss of interest in schoolwork and extracurricular activities
- Persistent mood swings and changes in personality
These are some other things you can do to help your children cope with your multiple sclerosis:
- Find someone besides yourself to talk with your children about your MS.
- Share how you are feeling, both physically and emotionally. Children appreciate it when you open the door.
- Allow your children to feel whatever emotion they are experiencing, and help them understand their emotions. Do not try to change what they are feeling.
- Include your children in family decisions so that they feel a sense of control and belonging.
- Seek professional help if you need it.
Intimacy with a loved one is an important component of a healthy, contented life. It does not have to disappear from the lives of couples when one partner has MS.
MS can affect the experience of intimacy in a variety of ways. Some people report changes in sexual function or feel uninterested in sexual contact. Some women report a lack of sensation or loss of sexual desire, and some men report erectile dysfunction as being the most common problem with sexual function. These changes in sexual function can be a direct result of the neurological changes, symptomatic (spasticity or bladder problems), or a result of psychosocial problems (not feeling sexually attractive because of a disability).
Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along the nerve pathway in the spinal cord. MS-related changes to these nerve pathways can directly or indirectly impair sexual functioning. As MS progresses, you may notice a decrease in sexual desire because of pain or lack of sensation, changes in bladder or bowel function, excessive fatigue, or changes in self-image.
Primary sexual effects
These symptoms can occur as a direct result of myelin breakdown in the spinal cord or brain:
- Decreased sex drive
- Altered genital sensations (numbness, pain, increased sensitivity)
- Difficulty or inability to maintain erection
- Decreased vaginal lubrication
- Decreased vaginal muscle tone
- Difficulty ejaculating
- Problems having an orgasm
Secondary sexual effects
These symptoms can arise as a consequence of MS, physical changes, or treatments:
- Fatigue can suppress sexual desire.
- Spasticity can interfere with sexual positioning or cause pain.
- Bladder or bowel problems are closely related with sexual dysfunction because the nerve pathways are nearby or shared.
- Sensory changes can make physical contact uncomfortable.
- Pain can disrupt physical contact.
Tertiary sexual effects
These symptoms result from psychological or social issues that interfere with sexual feelings and/or response:
- Performance anxiety
- Changes in self-image or body image
Most of these symptoms can be identified, and medications or other therapies may be helpful. The most important way of dealing with sexual difficulties is to discuss your feelings with your loved one. When MS problems begin affecting your sexual desire, avoiding talking can easily lead to avoiding sex. Sensory changes can make things that used to bring pleasure now bring pain and discomfort. Telling your partner what feels good and what doesn't is essential for an intimate relationship.
You can make discussions about intimacy a part of your healthcare visit with either your primary-care physician or your MS specialist. If you have symptoms that are interfering with sexual function, tell your healthcare team. If you are uncomfortable with talking about your sexual symptoms, then write them down and give the list to your physician or nurse. Many problems associated with neurological changes or symptomatic problems of MS can be medically managed.
MS can affect a man's ability to achieve or maintain an erection suitable for intercourse, and women may experience impaired sensation, numbness, or tingling in the genital area. Medications have been proved helpful for these symptoms. If you have concerns about changes in your sexual desire, discuss them with your healthcare provider.
MS can interfere either directly or indirectly with orgasm. "Primary orgasmic dysfunction" is caused from lesions in the spinal cord or brain that directly interfere with having an orgasm. Sensation and orgasmic response can be diminished if lesions disrupt the pathway. Indirect symptoms such as sensory numbness or pain can also interfere with achieving an orgasm.
Treatment of orgasmic loss depends on an understanding of the factors that are contributing to the loss. If you are having some problems achieving an orgasm, discuss them with your healthcare provider.
Studies suggest that the frequency of acute attacks, or exacerbations, usually decreases during the third trimester of pregnancy, then increases for up to six months after giving birth. In the long term, however, pregnancy does not seem to make multiple sclerosis worse. The reverse is also true: Multiple sclerosis does not make pregnancy worse. Pregnancy may worsen a few physical problems; for example, women whose walking is affected by MS may have more trouble late in pregnancy, when many women have trouble maintaining their balance. Also, bowel and bladder problems are a common part of pregnancy and may be more troublesome for women with MS.
Women who plan to become pregnant should talk with their doctor about which drugs they can continue taking during pregnancy and which should be stopped. The same applies for breastfeeding; many drugs are secreted in breast milk.
The term "alternative and complementary therapy" is generally used to describe any medical treatment or intervention that has not been scientifically documented or identified as safe or effective for a specific condition. Therapies are "alternative" when they are used instead of conventional treatments and "complementary" when they are used in conjunction with conventional medical interventions. For example, you may have weekly massages to complement your current drug therapy.
Alternative and complementary therapy encompasses a variety of disciplines that range from diet and exercise to mental conditioning to lifestyle changes. Examples include acupuncture, yoga, aromatherapy, relaxation, herbal remedies, and massage. While there is currently little or no scientific research supporting alternative and complementary therapies for multiple sclerosis, these treatments may affect how you feel.
Massage can reduce stress, tension, and depression. Check with your healthcare provider before seeing a massage therapist, and make sure there are no concerns that might make massage inappropriate.
Acupuncture seems to help the symptoms of pain, muscle spasms, and bladder problems in some people with MS. Be sure that the acupuncturist is licensed and uses sterile techniques, preferably with disposable needles. There are always risks when a procedure involves puncturing the body with needles, as is done with acupuncture. The main risk is infection. Unless sterile techniques are used, acupuncture could transmit other diseases.
Linoleic acid, or evening primrose oil (found in sunflower seeds), safflower oil, and sesame seed oil taken as an oral supplement may have a slight benefit for MS symptoms, but the research is still inconclusive.
This section has more information on evaluating alternative therapies.
Many people, especially those with chronic illnesses, are looking for answers to their disease management questions. Sometimes traditional medicine cannot provide those answers and, in turn, cannot provide a cure or relief of symptoms. Valid or not, alternative therapies often offer people those answers.
With the emergence of the Internet, there is much more information available and accessible to consumers. People are taking this information and deciding (with or without their healthcare providers) what course of action best meets their needs. Many times, alternative therapies seem "easier" or might appear as "quick fixes." However, this is not always the case.
Alternative therapy can be helpful in many cases, but some treatments can be ineffective, costly, and even dangerous. The best way to evaluate your options is to become educated. Ask the following questions:
- What is the treatment?
- What does it involve?
- How is it thought to work?
- Why does it work?
- Are there any risks?
- What are the side effects?
- Is it effective? (Ask for evidence or proof.)
- How will I know it is working for me?
- How much does it cost?
Once you answer these questions, weigh your options and decide whether the benefits outweigh the risks.
If you do decide to try an alternative or complementary treatment, make sure your health and pocketbook are protected. Here are some tips.
- Do not take the claim at face value. Ask reliable organizations about the therapy. Talk to members of a support group, your family, and your friends. Although they may not always be supportive, they can help you make an educated, objective decision.
- Discuss the therapy with your healthcare provider. Make sure he or she knows what therapy you are considering so as to discuss with you possible interactions or side effects with your current treatment. Your healthcare provider can also give you information on other patients who may have tried the same therapy.
- Talk to others who have used the therapy. Ask them what their experiences have been. Do not go solely on testimonials from the care provider or product manufacturer. Track down your own references, and get their opinions.
- Research the provider's background. Consult with the Better Business Bureau, and thoroughly research the background of the therapy provider. Determine how long he or she has been offering this therapy, as well as his or her credentials and philosophy of treatment.
- Avoid providers who refuse or are reluctant to work with your own healthcare provider. Be sure that the provider is willing to refer patients to a conventional doctor when necessary.
- Make sure you know the total cost of the treatment upfront. Most of these therapies are not covered by your insurance.
You should watch out for some red flags when evaluating an alternative therapy:
- Promotion: Be cautious if products or providers are promoted through telemarketers, direct mailings, infomercials, ads disguised as valid news articles, or ads in the back of magazines.
- Big claims: If a provider or product claims to be a "cure" for MS or makes other outrageous claims, be cautious. To date, there is no cure.
- Source: Be wary if the product is being offered through one manufacturer only.
- Ingredients: Make sure all of the active ingredients are listed. Do not trust "secret formulas."
- Testimonials: Testimonials are given only by those who are satisfied with the product, so beware, especially if the term "paid endorsement" is used. Also, be cautious if testimonials are given by people who are listed only by initials, locations, or first names.
- If you choose any complementary therapy, take time to evaluate your experience.
The best advice is "buyer beware." If it sounds too good to be true, it probably is. Finally, always consult your healthcare provider.
Last reviewed on 03/19/2007
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