Draft Fatigue

Fatigue in MS goes beyond regular tiredness after exertion. Some describe it as a sudden, complete tiredness that hits without warning and can vanish just as quickly. Others experience constant fatigue, making every task more effortful. It may be frustrating but manageable, draining spare energy yet allowing function. At its worst, it resembles flu-like exhaustion, hindering even minor tasks. Limbs may feel heavy, affecting grip and writing. Symptoms such as balance, vision, or concentration issues may worsen temporarily during bouts of fatigue. 

Heat

Heat often exacerbates fatigue for people with MS. Weather fluctuations, overheated environments, and physical activity can all temporarily worsen symptoms. Infections can also raise body temperature, further worsening fatigue until it returns to normal.

Everyday Activities

Fatigue can affect both your body and mind, impacting how and when you accomplish tasks, whether they're necessary or enjoyable. Activities like work, socialising, cooking, or playing with your children can all be affected. When your energy is limited, managing these activities can become a daily challenge. It's important to communicate with friends and family about how fatigue affects you, as their understanding and support can make a difference.

Explaining fatigue in MS

Fatigue varies among individuals and can fluctuate over time, making it challenging to articulate to others. People with MS often find solace in recognising fatigue as a known symptom, but describing this 'invisible' condition remains difficult.

Those around you

Sometimes, others may not realise when you're tired, leading them to make unhelpful comments like 'make more effort' or 'stop being lazy'. However, those close to you may notice signs of fatigue that you've grown accustomed to, such as walking slower later in the day. If they understand it's due to fatigue rather than a problem with your legs, they can offer assistance with tiring tasks.

Effects of MS on the central nervous system (primary fatigue)

MS can cause tiredness due to its effects on the central nervous system, which includes the brain and spinal cord.

Other symptoms of MS

Other MS symptoms such as muscle weakness, stiffness, pain, tremor, and depression can cause fatigue. It's crucial to address and manage these symptoms as they may be the underlying cause of your fatigue.

Living with the condition

Other factors besides MS symptoms may contribute to tiredness. MS can have secondary effects. For instance, lack of sleep due to bladder issues or muscle spasms can lead to fatigue. Reduced mobility and fitness levels may also result in lower energy. Additionally, some people experience anxiety or low mood due to MS, which can worsen fatigue.

What might be happening in the central nervous system to cause fatigue?

The impact of multiple sclerosis on the central nervous system is intricate, making it challenging to pinpoint the precise cause or causes of fatigue.

MS Damage

In multiple sclerosis, the immune system attacks the protective layer of myelin surrounding nerve fibres in the central nervous system, causing damage and stripping it off partially or completely. This disrupts messages from the brain and spinal cord to the body, leading to various symptoms depending on the affected nerves. For example, vision problems may occur if the nerves responsible for vision are affected. Research has not pinpointed a single area of the central nervous system responsible for fatigue in people with MS; it may be due to damage in multiple areas of the brain or spinal cord.

How the brain adapts

Some researchers suggest that fatigue may be caused by the way the brain adapts to MS. Brain scans of fatigued individuals show larger brain activity areas. This could be due to the brain finding new message routes when usual paths are affected. This increased effort might lead to fatigue. However, the exact link between nerve damage and fatigue is unclear.

Research continues to understand and manage these processes. MS Ireland's 'Getting the Balance Right' program looked at exercise benefits on fatigue. 1,500 participants engaged in various activities like physiotherapy, yoga, and gym classes. Results showed that these activities can reduce fatigue levels. MS Ireland offers fatigue management programs as part of its services. Contact your local MS Regional Office for more information.

Fill in a fatigue diary: 

An effective approach is to collaborate with a healthcare professional and complete a fatigue diary, such as the example provided. By assessing your fatigue levels throughout the day and in response to various activities, you may identify patterns. For instance, you might observe that fatigue worsens after substantial meals or in the afternoon, but improves after rest. Are there specific activities that leave you more tired than others?

How do you sleep?

You should also keep track of your nightly sleep patterns by maintaining a diary. If you share a bed, your partner may notice sleep disturbances that you are unaware of, such as muscle spasms that don't wake you but can affect your sleep quality. Be sure to make note of these as well.

How to use the diary?

Here you can download a one-day fatigue diary. Activities are listed and rated from 1 (low) to 10 (high) for fatigue levels. Rating fatigue may seem odd initially due to various influences on daily feelings. However, the diary includes context through comments noting any MS symptoms and details of activities. For instance, shopping could involve a short trip to a local shop or navigating a large supermarket. Providing detailed descriptions improves the diary's usefulness. Completing the diary on both good and bad days helps identify factors affecting fatigue, leading to discussions on managing or treating them.

Reviewing your diary, your overall health and medications could reveal reasons for your tiredness. You might see specialists for specific issues, such as a urology team for continence or a physiotherapist for muscle spasms. Alternatively, lifestyle changes could reduce your fatigue levels. Keep a diary after making changes or receiving treatment to compare and assess their impact.

Sleep: Lack of sleep could be the main reason for your tiredness, or one of several. Sleep problems might be caused by MS symptoms that can be managed better. Alternatively, other factors like noise or excessive caffeine intake could play a role. Make any necessary adjustments to improve your chances of a good night's sleep.

Infection: Anyone can get infections like colds, flu, or bladder infections, which can cause unexpected tiredness. If you've been feeling unusually tired lately, have you checked if you might have an infection that needs treatment?

Anxiety, Low Mood and Depression: Anxiety, low mood, and depression are common in MS and can cause fatigue. It can be hard to separate fatigue from mood issues as they may be linked. Your doctor or MS nurse can help if you're feeling low. There are treatments for depression and emotional symptoms, which may also reduce fatigue. Minimizing fatigue can also help with stress and anxiety. See MS Ireland information booklets for more details on mood, depression, and emotions.

Other conditions: MS can lead to various symptoms, but not every health problem you encounter is necessarily linked to your MS. Consider other potential causes. For instance, breathlessness might be due to asthma or heart issues, which your doctor should investigate further.

After addressing fatigue caused by other MS symptoms or external factors, the remaining fatigue may be directly connected to the activity of MS in the central nervous system. Effectively managing this fatigue involves examining your lifestyle. Assessing how you and those around you approach work, rest, and leisure time can unveil ways to simplify tasks and make best use of the energy you have.

Consider realistic changes

Consider how tiredness affects you and decide on changes you and others can manage. Aim for a mix of activity and rest, work and socialising. Keep in mind that changes might involve family, friends, or colleagues.

Professional Support

At home and at work, an occupational therapist may assess various areas to help you conserve energy during your daily tasks. Other health and social care professionals, like your MS Nurse, Neurologist, Physiotherapist, or Regional Community Worker, can also provide assistance with managing fatigue.

At Work

At work, you may need to ask your employer for changes, such as flexible hours or a closer parking space. Employers are legally required under the Disability Act 2005 to make 'reasonable adjustments' to support you at work. MS Ireland regional staff and Citizens Information Board (CIB) staff can explain your rights and help you get the necessary adjustments. 

Rest

Rest is essential for managing fatigue. It can prevent exhaustion and sudden stops, giving you more control over your activity. Short breaks or 'power naps' during the day can be helpful, or a longer rest at a specific time. For example, taking a break after work can lead to a more enjoyable evening with family or friends. Complete rest is key, so avoid tasks that engage your mind or body. Instead, focus on relaxation techniques like sleep, music, yoga, or meditation. If worries arise, jot them down and set them aside. Others should respect the importance of rest in managing fatigue.

Sleep Hygiene

Creating a good 'sleep hygiene' routine can improve the quality of your sleep. Here are some tips:

• Stay physically active.
• Get daily exposure to sunlight.
• Wind down before bedtime.
• Avoid becoming overtired.
• Avoid large meals and stimulants before bedtime.
• Manage stress, especially before bedtime.
• Stick to a bedtime routine, including going to bed at the same time every night, using relaxation techniques, or taking a warm bath.
• Avoid screens in bed, including TVs and phones, and limit screen use before bedtime.

Prioritise

Everyone's priorities vary over time. If you're feeling tired and can't complete all your tasks in a day, focus on the most important ones. Changing your routine can be tough, but prioritising activities can help you save energy for what matters most.

Start by listing all your daily or weekly activities. Note your priorities and identify tasks you'd rather avoid. Some tasks can be done less frequently or eliminated altogether. Think about ways to make your prioritised activities more energy-efficient or schedule them for times when you're most alert. Don't hesitate to seek help with tasks if needed.

Be realistic about what you can accomplish and avoid taking on too much.

Asking for help

People might say to you 'If there's anything you need...' or 'If there's anything I can do...', but it's not always easy to ask for help, even when it's offered.

It can be helpful to make a list of tasks you'd like help with. Then, when someone offers, you can explain exactly what would be most helpful. Here are some tips to help you figure out what you need:

• Break down the help you need into manageable tasks.
• Estimate how long each task will take and when it needs to be done.
• Categorise tasks into personal, household, or health care.
• Understand that you may not feel comfortable asking certain people for certain tasks.
• Asking for help is a sign of strength, organisation, and a desire to move forward.

Plan

Knowing your priorities can help you plan your time effectively. While creating a timetable might seem regimented, it can boost confidence in completing tasks. Be realistic about daily goals and balance activity with rest, especially if fatigue is a factor. Here are some tips for easier planning:

• Set realistic targets.
• Balance heavy tasks with lighter ones.
• Avoid activities that can't be interrupted.
• Break down large tasks into manageable stages.

Organise Living and Work Spaces

You may find practical changes can be made to your workplace or home. This could involve rearranging desks or cupboards, adjusting the temperature, or improving lighting. Simple changes like keeping commonly used items within easy reach, storing lightweight items in higher spaces, and decluttering work areas can make a space more efficient. Good lighting is important to prevent eye strain, and consider whether items like pens or cutlery could be easier to use with adaptations. An occupational therapist can help assess your spaces and suggest helpful adaptations or equipment. Remember, useful changes don't always require specialist equipment or major alterations.

Posture

Having a good, relaxed posture can improve efficiency in many tasks, as shown in the diagrams on the next page. Aim for an upright and symmetrical posture, avoiding excessive twisting and bending. Practicing good posture can become easier over time as your body adjusts, helping you save energy. A physiotherapist can identify any posture problems and recommend suitable exercises to help.

Standing

When standing up, aim to keep your chin tucked in, shoulders relaxed, and bottom tucked in to maintain your spine's natural shape. Avoid locking your knees; instead, keep them straight but loose. Stand with your feet slightly apart, toes pointing forward.

Sitting

When sitting, keep your chin tucked in, head level, and shoulders relaxed to avoid neck strain. Distribute weight evenly across both buttocks and support thighs on the chair with feet on the floor or a footrest. Adjust wheelchair foot-plates properly. Rest when needed to reduce posture strain. Consider sitting for tasks like vegetable prep or ironing. A sloping seat adjustable stool or walking stick with a seat can aid in getting up and down. Consult an occupational therapist or physiotherapist before purchasing aids.

Exercise

Symptoms of MS can hinder exercise, and it may seem counterintuitive to exert yourself when fatigued. However, exercise improves strength, fitness, and mood, which can aid in managing fatigue. It's important to balance exercise with rest and stay cool, especially if heat exacerbates fatigue. Planning short exercise sessions and trying water-based activities or cooling vests may be beneficial. Consult a physiotherapist for a suitable exercise programme. Click here to find out more about MS Ireland’s Physiotherapy and Exercise programmes. 

Healthy Eating

Combining sensible exercise with a balanced diet can help you maintain a healthy weight and get the energy you need. Weight loss and weight gain can both be issues for people with MS and can make coping with fatigue more difficult. A dietitian can help you plan a suitable diet to maintain a healthy weight.

Your food choices can also make a difference. For instance, large, hot meals can worsen fatigue, and caffeine or sugary snacks might give you a short-term energy boost but leave you feeling more tired later on.

In some areas of the country, MS Ireland Regional offices, hospitals, HSE community teams, and rehabilitation centers offer fatigue management programs. These programs, based on the strategies outlined above, can be conducted in group or individual settings.

The courses help individuals with long-term health conditions maintain their health and improve their quality of life by teaching techniques for managing fatigue. Courses typically last six weeks (with sessions of two-and-a-half hours per week) or take place over weekends. They are led by experts in managing fatigue in MS.

To find out about fatigue management courses in your area, visit www.ms-society.ie or ask your GP, Occupational Therapist, or MS nurse for information about locally available or online courses.

FACETS (Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to lifeStyle) is an evidence-based group program that runs online over six consecutive sessions. It incorporates energy effectiveness techniques and suggests ways to maximize energy. Many participants have found it helpful in managing their fatigue. For more information about the program, ask your MS Ireland Regional Community Worker for a referral.

Some people find that medicines help them manage their tiredness. Although there are currently no drugs licensed in Ireland specifically for MS tiredness, certain drugs licensed for other conditions are sometimes prescribed. Examples of these include:

• Amantadine (Symmetrel): This medicine is licensed to treat Parkinson's disease and some viral infections. Research on its use for MS tiredness is inconclusive, but the UK's National Institute for Health and Care Excellence guideline for MS suggests a small benefit from a daily dose of 200mg. Side effects can include trouble sleeping and vivid dreams.
• Modafinil (Provigil): This medicine is used to treat narcolepsy, a sleep disorder causing excessive daytime sleepiness. Studies on Modafinil for MS tiredness have had conflicting results and haven't proven its benefits, but it's sometimes prescribed for MS tiredness and some people find it helpful. Side effects can include trouble sleeping, headaches, swollen legs, and a red network over lower legs.

If you would like to explore the potential use of medicines to help manage your fatigue, we recommend discussing it with your healthcare provider for personalised support.

Information from Healthcare Providers

There has been some research on drug use for MS fatigue. However, the trials typically involve small numbers of people, last for a short time, or use varying methods to measure fatigue. This makes it hard to compare studies and draw definite conclusions from the results. Your neurologist, MS nurse, GP, physiotherapist, and other healthcare professionals are also valuable sources of information.

MS Ireland Publications 

MS Ireland has a number of publications relating to many aspects of living with MS. To view and download all our publications for free, log onto our website www.ms-society.ie

MS Ireland Website And Magazine 

Keep up to date with news relating to MS by logging onto our website www.ms-society.ie and signing up to receive regular email updates. 

Members also receive our magazine, MS News. 

MS Information Line 0818 233 233 

The MS Information Line is an information and listening service
for anyone needing immediate information or support on any aspect of MS. It is a confidential service. 

Regional Services 

10 Regional offices around the country provide individuals and their families a home visit service where our trained staff can answer queries, offer advice and provide referrals, if necessary. Regional offices also provide a programme of activities for groups of people; newly diagnosed days, carers support groups, personal development sessions and a range of physiotherapy and exercise interventions. 

MS Care Centre 

The Centre provides short-term respite care, therapy services, neurological assessments and social activities for residents. While staying at the Centre residents can speak to our many trained professionals including the MS nurse and the Physiotherapist. 

Your neurologist, MS nurse, GP, physiotherapy and other health-care professionals are also a key source of information. 

https://www.ms-society.ie/ms-and-me/its-not-just-tired-ms-fatigue

https://www.ms-society.ie/ms-and-me/ms-fatigue-when-i-just-cant

https://www.ms-society.ie/ms-and-me/falling-awake-fatigue

https://www.ms-society.ie/ms-and-me/fatigue

https://www.ms-society.ie/ms-and-me/ms-fatigue

Fatigue Management and MS with Dr Michelle Murphy: https://www.youtube.com/watch?v=Qk1-GREoOt4&t=52s