Multiple Sclerosis: Living with the Condition

Multiple sclerosis (MS) can affect many aspects of daily life. Addressing things such as diet and exercise, and emotional wellbeing, can help to improve symptoms and quality of life.

Lifestyle

Overall physical wellness for anyone living with MS goes beyond managing the disease and its symptoms. When people with MS adapt to a healthier lifestyle, it can have a direct impact on disease progression and quality of life. This can include things such as taking regular exercise, eating a healthier diet, and quitting smoking.

Exercise

Keeping physically active not only improves overall wellness, but can be very helpful in the management of MS symptoms. Exercise can improve the health of your heart, improve overall strength, improve balance, boost mood and cognitive function, increase flexibility, and help with bladder issues. Your MS team of caregivers will work with you to tailor a program that suits you, and works around your individual interests and ability.

Exercise doesn’t have to be limited to cardiovascular workouts. Any form of physical activity, such as walking, gardening, or completing chores, can be beneficial as long as it is done safely. Many patients with MS find exercising in water very beneficial as the support of the water allows them to move and stretch in ways not otherwise possible. It can help improve flexibility and stretch tight muscles.

When MS causes weakness in the core muscles, it can cause trunk instability which leads to imbalance and falls. Core strengthening and stability exercises have been proven to improve trunk stability and decrease imbalance. A mixture of endurance and strength training exercises can decrease fatigue, imbalance, and fall risks leading to a better quality of life.

It is increasingly recognized that exercise also helps rewire and repair the nervous system.

Always discuss your exercise program with your care team to avoid any injury and remember to stay hydrated and avoid overheating. Build-up your exercise plan slowly with the guidance of a professional and always remember to stretch afterwards.

Diet

Switching to a healthy diet has been proven to be beneficial for people with MS, helping to alleviate some of the symptoms of the disease. While there are many ‘strict and specific’ diets talked about that claim to have benefits, there is no conclusive evidence that these will be beneficial overall, so, doctors do not recommend one specific diet or supplement.

However overall changes that focus on healthier foods can really make a difference. The best approach to maintaining a healthy diet is eating well-balanced meals that you enjoy. Following an extreme or unrealistic diet is not sustainable in the long-term, and you will probably not be able to maintain it if it is difficult to follow and you do not enjoy it. Eating well can improve fatigue, depression, and constipation. A poor diet not only impacts overall health but can make symptoms such as pain and weakness a lot harder to manage. Always be careful when changing your diet to ensure that you are not cutting out important nutrients.

A large-scale US study into the diets of MS patients found that those with the overall healthiest diets, consisting of lots of fruit, vegetables, and wholegrains, had lower levels of disability and lower burden of symptoms, including pain and cognitive impairment.

A healthy diet should start with the basics; it should be balanced and contain all the nutrients you need:

• Try to increase fruit and vegetables
• Take adequate protein from animal or plant sources
• Choose carbohydrates that are wholegrain
• Reduce intake of fatty, salty, and sugary food
• Drink plenty of water
• Food rich in vitamin D, which can help reduce the need for supplements

Low levels of vitamin D have been linked with a range of medical conditions, including an increased risk of getting MS, as well as more frequent relapses and an increase in disability. Good sources of vitamin D include:

• Increased exposure to sunlight: just 20-30 minutes outside a day, 2-3 times a week, exposing your face and forearms to sunlight, can help increase your vitamin D levels. However, exposure to sunlight alone may not be enough, especially if your skin is dark or you choose to cover up while outside.
• Food rich in vitamin D: includes oily fish like salmon, canned tuna, sardines, as well as liver, eggs, and mushrooms.
• Vitamin D supplements: these can be taken in the form of tablets, capsules, or drops.

Dieticians and nutritionists are part of the multidisciplinary care team who will work with you to support your nutritional requirements. Together, you will decide on a diet plan that suits you and can support all your medical needs.

Sleep

Getting enough sleep is key to maintaining overall wellness and staying healthy. But living with MS can make this difficult. A lack of quality sleep can make some MS symptoms worse and can impact mental health. Sleep related issues associated with MS include insomnia (difficulty falling and staying asleep), getting too much sleep, breathing difficulties when asleep (called apnea), falling asleep uncontrollably (narcolepsy), and many more.

Sleep issues related to MS can be caused by lots of things, including side effects of medication, nutrient deficiencies, reduced physical activity, or emotional changes such as anxiety and depression. Your care team will work with you to help you identify any sleep issues you might be experiencing and identify things you can do to address them. This may include treating symptoms that are causing sleep interruptions, reviewing side effects of medication, and if necessary, exploring medication to aid sleep.

There are lots of effective things you can do to help improve sleep. These include:

• Reducing caffeine intake
• Ensuring your bedroom is the right temperature and dark enough
• Creating a bedtime routine that you stick to every night to help you relax and prepare for sleep, which includes a period of doing something that relaxes you
• Making sure you go to bed at the same time every night, and wake at the same time, as this helps your biological clock to set
• Not exercising for 4 hours before sleep as it is a stimulant
• Reducing fluid intake a few hours before bedtime so you don’t wake needing to use the bathroom
• Not using your phone or any other device in bed – bed should be for sleeping only
• If you don’t fall asleep within 20 minutes, get up and do something relaxing rather than lying in bed and watching the clock

Quitting smoking

Anyone who smokes, or who is exposed to second-hand smoke, is at a greater risk of developing MS. It can also speed up disease progression and make symptoms worse. Those who smoke may also not benefit from the full effects of disease modifying treatments.

Quitting not only has an impact on overall health and wellness, but it can also have a big effect on MS symptoms and disease progression. It can help to improve strength, cognitive ability and reduce the level of disability. There are many strategies available to help support you to quit, including emotional support and medication. Stopping smoking can be hard, so a positive attitude is very important. Your care team, together with family and friends, are invaluable in helping you to quit for good.

Emotional well-being

Mental health should receive as much attention as physical health when we are aiming to improve overall wellbeing. Many people living with MS will experience issues with their mental health at some point, most commonly depression and anxiety. An MS diagnosis, especially in younger adults, may significantly change the course of your life, so patients can feel high levels of uncertainty, loss, or sadness after their initial diagnosis. MS can affect a part of the brain that controls emotions, so as well as the symptoms affecting the way you feel, it may be caused by neurological changes. Talking to your care team about your feelings is very important. Acknowledging changes in your emotional wellbeing is the first step in improving it. There are lots of things that can be done to help improve mental health issues and your care team will work together to give you the support you need.

Stress

Being diagnosed with an unfamiliar chronic disease, with no cure, can be very stressful. Because MS often affects young people who have previously been healthy, it can be even more upsetting. The unpredictability of the disease makes MS very stressful, as well as the invisibility (or visibility) of symptoms, and the physical symptoms themselves. Adjusting to the disease can also be a long and stressful process. Many people with MS feel that when they are going through a stressful time in their lives, their MS symptoms seem worse.

Psychological care can be an important part of your stress management program. Psychologists can help to identify stressors in your life and examine ways in which you might cope with these difficulties. Sometimes stress can be exacerbated by the way we think about situations. A psychologist can help you to identify patterns of thinking which contribute to your stress and help you to develop new, healthier, thinking patterns. In addition, psychotherapy can help you to better express your emotions, including those about your MS, and develop strategies for better communication.

Depression

Many people living with MS experience depression and are at a higher risk than the general population. There are many factors which can contribute to depression; sometimes, the diagnosis of MS itself can bring on temporary low mood, as the person adjusts to and copes with their new diagnosis, or a person with MS may feel sad or down during a relapse. People with MS may also experience grief related to the impact that MS has on their lives, and it can impact worries about the future.

The progression of MS can also cause depression. The disease can damage the parts of the brain involved in emotional expression and emotion regulation, and MS related changes in the immune and neuroendocrine system can cause low mood. Some medications for MS can also trigger or worsen depression.

Cognitive health

Many patients with MS experience changes in cognition, as the disease causes a delay to the speed with which your brain processes information. The most affected cognitive abilities are memory or recall, attention and concentration, and processing speed.

Changes in cognition are usually mild, and there are many things that can be done to manage them. Keeping your mind active is an important part of life – it acts as a form of exercise for the brain. Engaging in activities that are mentally stimulating can help you to stay alert when changes to the brain occur. Research has shown that those who spent their life engaging in educational or stimulating activities ‘bank’ some cognitive reserves. In those who have led actively cognitive lives, and ‘banked’ cognitive reserves, studies have shown that the impact of cognitive function is reduced or slowed down. Whilst we can’t change the past, you can still add to these reserves. Any activity that engages your brain, whether through curiosity, creativity, or challenge, can build reserves and boost cognitive health. This could be reading, writing, doing puzzles, or playing games. Exercising the mind may help to reduce the severity of cognitive changes that MS can induce, as well as boosting overall mental wellbeing.

Psychologists may administer tests for those diagnosed with MS in order to assess cognition. These tests can be used to obtain a baseline assessment of cognitive functions and evaluate changes over time. In special circumstances, you may be referred to a neuropsychologist for a full, comprehensive range of assessments.

Psychological care can be an important way in which MS patients cope with and adapt to cognitive changes. Psychologists can provide psychotherapy focused on helping patients to find strategies to compensate for changes in cognition, and deal with the impact of cognitive problems on self-esteem and everyday life. Psychologists can also help assist people with MS in finding ways to talk about their cognitive problems with others, such as family members, members of their healthcare team, or even at work. Last but not least, psychologists can help patients to identify and manage concerns such as depression, anxiety, stress, and fatigue which also impact cognition.

Always talk to your doctor if you notice any change in your ability to concentrate, memorize, or process information.

Relationships

The diagnosis and management of MS can be a stressful life event with major implications on relationships, with a range of family members and loved ones. Psychological care can help people with MS to navigate the ways in which relationships can change as a result of an MS diagnosis. Psychological services provide a comfortable, confidential, and safe space in which people with MS can explore these issues. For example, there may be concerns about whether or not to tell others, including partners, relatives, and children, about an MS diagnosis.

It is important for couples and families to keep their relationships open and balanced. Psychological teams can help explore ways to manage MS as a team, enhance communication, as well as address emotional and physical intimacy. It is also important for people with MS to find a balance of giving and receiving in their relationships.

Spouses, partners, family members, and friends often play a role in the care of people with MS. This can be fulfilling, meaningful, and help to strengthen relationships. However, caregiving can be stressful, as well as emotionally and physically exhausting. It is important for caregivers to look after their own health and well-being as well.

Managing fatigue

The cause of fatigue in MS is unknown, but it affects more than 80% of people living with the disease. Fatigue is often misinterpreted as depression in MS, with family members sometimes not having a clear understanding of its impact.

Sometimes fatigue can be caused by other conditions, such as a nutrient deficiency, so it is important rule this out. Often sleep deprivation, caused by severe symptoms, can cause fatigue. Depression can also cause fatigue. There is a type of fatigue called lassitude, which is unique to MS, and is characterized by a fatigue that occurs daily, appears early in the day, and gets progressively worse. It is so severe that it can interrupt normal daily activities.

Your multidisciplinary care team will work with you help you to manage fatigue. They will evaluate many factors to help identify the cause of the fatigue and develop an individual treatment plan. Your doctor will review your medications as sometimes, fatigue can be a result of a side effect of something you are taking. Occupational and physical therapists will identify ways you can conserve energy while completing daily tasks, and look at ways to do exercise that can prevent deconditioning. Psychologists will work with you to look at ways to manage stress and increase relaxation techniques. Your sleeping patterns will also be addressed to ensure you are getting enough good quality sleep.

Continuing in employment

Remaining in employment is possible after an MS diagnosis. Although it may seem hard after a severe replace is experienced, thanks to disease modifying treatments and effective strategies to manage symptoms, it can be done.

MS is a complex and unpredictable disease which can an impact your ability to work. If a new symptom occurs, it can raise many questions about the future. But working with your care team to understand what you can achieve is very important. Understanding your symptoms and the limitations they might cause is important. Discussing them with your employer and colleagues can also help. Remaining employed can be an empowering and rewarding part of life with MS, so talk to your team about setting – and achieving – some employment goals that can be accomplished.

Pregnancy

It is important to understand that MS affects everyone differently, so discussing fertility, pregnancy, and breast-feeding with your doctor is crucial.

There is no proof that MS impacts fertility. If you are taking a disease modifying treatment, your doctor will discuss when and how to stop taking it if you plan to conceive. There have been many studies exploring the link between MS and pregnancy, and they have found that there is no difference between pregnancy complications, labor, delivery, and miscarriage rates in women with MS and those without. Some women may experience more severe symptoms during pregnancy, but women who are pregnant generally suffer from less relapses, as the hormones involved in pregnancy are believed to interfere with the immune response.

Studies have shown that relapses following pregnancy may be decreased, which is believed to be related to breast-feeding, and demonstrates its safety in MS patients. Some medication may pass into breast milk, so always discuss this with your doctor. Post-partum depression has been found to be more common in women with MS, so always discuss any feelings or changes in mood with your care team.

Travel

There is no reason why someone with MS cannot travel. It may take a little more planning, but it can be an extremely rewarding part of life. Always discuss your plans with your care team and make sure they provide you with a note to explain any medications and additional needs. Also discuss any vaccinations you may need to take to travel with your doctor.

Always take extra medication away with you, and speak with your hotel and airline to request assistance whenever you may need it. Try to avoid visiting hot places if possible, or plan to visit in cooler months. Be careful not to over do it, and schedule rest days. Most importantly, make sure you enjoy yourself!