What is fatigue?
I experienced MS fatigue for the first time during a relapse more than ten years ago. It was so unnatural. I had never felt anything like this before. It was as if my body was made of lead and every movement required an astounding amount of energy. I remember how feeding the cat left me exhausted; so much so, that I didn’t have energy left to make a meal for myself! The brain fog was quite spectacular too. I couldn’t remember what people were telling me within a minute of them saying it. I had to write down absolutely everything. I couldn’t even articulate my ideas, and at times I struggled to find my words to make a full sentence. That was so debilitating, especially as, at the time, I relied on my intellectual abilities to do research and analytical work.
There have been been several definitions for MS fatigue, but the most widely used is as “…a subjective lack of physical and/or mental energy that is perceived by the individual or caregiver to interfere with usual or desired activity”[1].
Fatigue is one of the most common and disabling symptoms of multiple sclerosis, often impacting severely on the individual’s personal and professional life, and with that, overall quality of life.
People who suffer from fatigue know that it’s much more than common tiredness or exhaustion. I’m lucky that I don’t experience fatigue on a daily basis. I believe I don’t have the same energy levels as many “normal” people around me but I’ve learnt to live happily and feel fulfilled with the amount of energy I have.
Although the biological mechanisms underlying fatigue are still poorly understood, we know there are two kinds of fatigue:
- primary fatigue which is fatigue due to MS itself and results from dysfunction of the immune system, central nervous system and imbalances in the hormonal system [2];
- secondary fatigue which is associated with symptoms that are commonly experienced in MS such as insomnia, anxiety and depression as well as chronic pain.
However, if you can address some of the symptoms causing secondary fatigue, it can have a positive effect on your overall fatigue levels; in turn, this can help you perceive primary fatigue as less intense.
Coping strategies to manage fatigue
From my own experience, experiences from my clients, and what I’ve read on the subject, I detail below seven proven ways to effectively manage fatigue.
1- Keep a diary
How can that help? I asked myself exactly the same question when fatigue hit me! I was already exhausted, why should I lose the precious little energy I had, keeping a diary of my activities?
Even if you’re skeptical, I strongly recommend this exercise. It’s enlightening, as it makes you more aware of how you function on a daily basis. All you need to do is to keep a diary of your daily activities. Record the time and duration of the activity, and note how fatigued you are from 0 to 10 before and after. I found it especially useful to record how you feel overall, afterwards.
Consider that there are three types of energy:
- Physical energy which results from the optimal functioning of our body and cells. When you lack physical energy you feel weak in your body.
- Mental energy which results from the optimal functioning of your brain. If you lack mental energy you find it hard to think, concentrate and memorise.
- Emotional energy which results from a healthy balance between body and mind. When you lack that type of energy you feel emotionally drained, overwhelmed, or burnt out.
Keeping a diary is the first step - find out which activities drain you the most and which type of energy they deplete most. In doing so, you’re likely to discover patterns around the time of the day that you have the more energy, and can use this information to adequately plan and carry out activities that are important to you. You’ll also notice which activities make you feel good (even if you’re fatigued) - and, in doing so, those that make you feel worse!
2- Prioritise activities
Prioritising activities goes hand in hand with the diary exercise above. Once you’ve discovered these patterns - times of day when you’re usually more active and which activities are likely to leave you bed-ridden for a couple of days - you can start making informed choices about which activities you’re going to prioritise, choosing less demanding tasks for when energy is low.
The key here is to be realistic and to try to spread out activities through the week, as well as having some flexibility on what can be achieved on a given day with the amount of energy you have. It’s also very important to plan rest and recovery periods.
Prioritising means making choices. I understand it’s difficult and frustrating not being able to do all we want to do, or all we used to do - particularly when we have a job we love, or responsibilities like kids or elderly parents to look after. No-one wants to compromise. But no matter how infuriating or unfair it is, living with fatigue requires to make some changes to our lifestyle. We can try to fight it, and lose a considerable amount of energy in doing so, (achieving little in the process); or, we can try to work on acceptance, ‘letting go’ and making peace with who we are and with our bodies, to live our lives as fully and happily as we can.
Practicing sophrology helped me embrace the second option. It also helped me alleviate many of the symptoms of secondary type fatigue which increased a lot of my energy levels. As I said earlier, I know that I can’t compete with people I know who are constantly on the go. Nevertheless, every day I practise self-care daily, achieving tasks that makes me feel good and proud of myself, and, little by little, I move forward - slowly, perhaps - but always in the direction. On my to-do list, I have a range of activities; those I know are not too energy-consuming, and then other, more demanding tasks. I tend to see how I feel in the morning and decide which activities are right for me that day. I’ve stopped comparing myself to others and I’ve learnt that it’s ok to ask for help sometimes. That, in itself, is a huge accomplishment!
3- Have many restorative breaks - learn the art of pacing
This is not only for people living with fatigue; it’s for everyone. But if you suffer from fatigue it’s essential that you have as many recovery breaks as you can during the day, and that you even take those breaks before you think you need them. Break down your tasks as much as possible and pace yourself. This will help conserve and restore energy, ultimately allowing you to achieve more by the end of the day.
I used to clean the whole house in one go. I was very house proud and obsessed with cleanliness. I thought it was important to me. However, after experiencing fatigue, my priorities changed and I have learned to live in harmony with a bit of dust and untidiness. Now when I clean, I make rotas, do one room at a time, and ensure to include a break in-between.
Also, when I talk about restorative breaks, I don’t mean sitting down watching telly. If you can do something that is going to help your body reduce its stress levels and reset its vital functions, that’s more effective. For instance, try a breathing exercise. First, become aware of the pace of your breathing and let your breathing become more and more regular and maybe a little bit deeper. Try to breathe in and out for the same amount of time (five seconds if you can) for a few minutes, imagining you’re breathing from you heart. This is known as biofeedback. [3]
4- Reduce stress levels
Have you noticed your symptoms feel worse when you’re stressed? Are you more likely to have a flare up?
Stress aggravates many symptoms in most chronic conditions, including multiple sclerosis and fatigue. Chronic stress can even lead to anxiety and depression.
I could write several pages on stress alone, its mechanisms, and how it impacts our biology. However, I want to focus on how you can release stress practically, as learning this can greatly improve your quality of life.
We’re all different and so are our responses to stress, so the first suggestion is to try different things to see which ones help you more. Sophrology is a great way to activate the relaxation response in your body and there are several exercises which can help, such as gentle body movements, breathing or visualisations. So, it’s possible to find which tools works best for you, and, through regular practice, learn how to release and manage your stress levels efficiently throughout the day. This, in turn, means that you can retain and restore energy levels, experiencing fatigue to a lesser degree.
For instance you could imagine yourself in a beautiful place: a beach; a forest; or perhaps a garden, on your own, enjoying all the sensations you experience in that place - what you see, hear, smell, taste, and touch. Allow yourself to do whatever you’d like to do in that place and take a few minutes to relax there, noticing how it makes you feel.
5- Engage with physical activity
People with MS and other conditions such as fibromyalgia or osteoarthritis are encouraged to practice physical activity. Although it may sound counter-intuitive that exercise will boost energy levels, as long as it’s built over time and practiced within your limits, it will help the good functioning of your whole being, body and mind.
It will help with releasing stress, building muscles and producing energy from the mitochondria in your body cells, as well as improving sleep quality and duration. I’m not suggesting running a marathon, but do engage with moderate levels of physical activity, and build it up to increase your strength and endurance. However, I always recommend checking with a GP, too, as there are conditions such as chronic fatigue syndrome where exercise is not recommended. I also recommend the services of Dom Thorpe, I love how his training is clear, accessible and motivational.
In addition to helping with fatigue, exercise for those of us with MS can give us more in control of our bodies, achieving better balance and flexibility. The best tip is to find a form of exercise you like, whether it’s at a pool, a yoga or pilates class, or perhaps simply short walks or pottering in your garden. A client once shared with me how sophrology helped her be more aware and mindful of her body when doing physical exercise. She found it had helped her regulate her exercise routine and find what was just right for her.
6- Pay attention to your nutrition
Good nutrition is a key element of our wellbeing along with physical exercise and sleep.
It is not my area of expertise, and I personally don’t follow any particular type of diet but I do keep to the general guidelines of healthy eating. There are plenty of resources available about eating healthily if that’s an area you’d like to improve in, like the MS society website.
From my point of view, the most important thing is that everyone is different and it’s important to find the diet that fits you. Also it’s worth investigating if you may have food allergies or intolerances as these can cause inflammation and aggravate fatigue symptoms.
It’s also important to plan in the day when and how you’ll be preparing the meal as this in itself will require energy. I tend to go for the easy-to-prepare recipes. You can divide it into smaller tasks, such as peeling and chopping ingredients, possibly in a sitting position rather than standing. Have a pause and restorative break before cooking.
7- Improve sleep
Sleep unfortunately doesn’t correlate with fatigue. Fatigue is not something you can “sleep off”.
However, as for stress, chronic lack of sleep or insomnia aggravates many symptoms, reduces physical and mental wellbeing and affects our mood. When sleep improves, the experience of fatigue is dampened.
So how can you improve your sleep right now? There are a multitude of sites with very useful suggestions on how to improve your sleep routine and what to do to get better sleep, such as can be found on the NHS site.
However, I’d like to share with you the two pieces of information about sleep that my clients always find super helpful.
- You prepare for your night’s sleep during the day. Therefore it’s important to take the restorative breaks I was mentioning earlier on, as well as doing something to release stress throughout the day so that you’re not in hyper vigilance mode in the evening. If you practice a physical activity, it’s likely to help improve the amount of time you spend in deep sleep. However, be careful not to exercise just before going to bed.
- Your sleep is made of cycles. These are usually about 90-minute long and comprise a period of deep sleep and a period of rapid eye movement sleep (during which, you dream). To improve sleep, it’s useful to become more aware of those cycles and to go to bed when you start to feel drowsy in the evening. Also, when you wake up at night, know that if you haven’t fallen back asleep after about 20 minutes, you’re likely to have to wait for the next cycle before you fall asleep again, i.e. 90 minutes. If you worry about not sleeping and start getting fidgety, then you’re likely to miss that cycle too and remain awake for three hours! (two cycles of 90 minutes).
Many of the people I work with experienced better sleep quality as a result of practicing sophrology. In fact, one of my clients was really surprised by how quickly she recovered from insomnia.
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References
[1] Multiple Sclerosis Council for Clinical Practice Guidelines: ‘Fatigue and Multiple Sclerosis: Evidence-based Management Strategies for Fatigue in Multiple Sclerosis: Clinical Practice Guidelines’. The Council; 1998.
[2] Braley TJ, Chervin RD. ‘Fatigue in Multiple Sclerosis: Mechanisms, Evaluation, and Treatment'. Sleep. 2010 Aug 1;33(8):1061-7.
[3] Lehrer PM, Gevirtz R. ‘Heart Rate Variability Biofeedback: How and Why does it Work?’ Frontiers in Psychology. 2014 Jul 21;5:756.
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