Symptoms of MS: Fatigue

FatigueMS fatigue can be one of the most disabling symptoms of MS. According to some studies, over 90% of people with MS experience fatigue. It’s described by real life MS patients as the most invisible of all MS symptoms. It’s also the symptom that’s the most difficult for friends, family, and caregivers to understand. It’s probably the one symptom that can lead people to think you are making a fuss about nothing at all. Fatigue in MS is somehow stealthy— you may find you can sleep as much as you want, yet still nothing has changed in your fatigue. Physical activity also becomes harder due to unmanaged fatigue. Now, let’s take a close look at MS fatigue. What is MS fatigue?Fatigue in MS is not just an ordinary tiredness, like you might get at the end of a hard day's work. It is a frequent and disabling symptom in patients with MS. What causes MS fatigue?The cause of this symptom is currently unknown. Ongoing studies seek an objective test that can be used as a marker for fatigue and for precise ways to measure it. It’s believed to be either due to active inflammatory disease, or to be a secondary symptom, caused by other medical conditions, heat, medications, stress, depression and sleep problems. MS fatigue can be overwhelming and for some people it can have a negative impact on work and family life, mental and physical health, and social and recreational activities. It’s often misinterpreted—people around you may think patients are depressed, or just not trying hard enough. How is MS fatigue different from ordinary fatigue?MS fatigue can be both physical and mental; it saps energy in an instant and can stop you from completing tasks. MS fatigue can be very debilitating and unlike ‘ordinary’ fatigue, it can take a long time to recover from. MS fatigue is often overwhelming. It can happen at any time without warning or without any apparent reason. Some people say they experience MS fatigue after gentle activities such as writing or reading, to the point where they immediately need to rest. Others say that MS fatigue happens after physical exertion, such as taking the dog for a walk or doing the shopping. For others, MS fatigue can happen after cognitive exertion such as working on the computer and completing mentally demanding tasks. You may also experience MS fatigue when you wake up, in some cases every day, even after a good night’s sleep.How to describe MS fatigue to others?People around you may notice that you are walking slower than you were the other day, that you are taking more time than usual to complete a particular task, or slow in responding to conversations. Noticing the effect of MS fatigue can help people around you to offer support or assistance. Here are two examples that were found to be useful in describing MS fatigue: The traffic light explanation: green, you feel like a car passes a green light and can continue to proceed if it has enough energy. Yellow, the car needs to think about stopping to avoid accidents. And red, the car needs to stop and rest to continue. The battery explanation: A fully charged battery is functioning normally as it has abundant energy needed to complete day-to-day activities. As the battery is running low, you need to slow down and limit usage and plan to charge it soon. A completely empty battery is out of charge and all activities come to a halt. The recharge time may take longer. The good news is that fatigue can often be improved by employing energy saving techniques, making lifestyle changes and taking certain medications. It is important to first rule out other potential causes of fatigue that are unrelated to MS such as anemia or thyroid conditions. Understanding and managing fatigue Managing MS fatigue involves maximizing and using energy efficiently, as well as prioritizing tasks. Taking time to analyze your MS fatigue and to find strategies to manage it can be a tiring exercise. However, it can be useful to identify things that bring on your MS fatigue, and find ways to work around triggers. There is no one-size-fits-all answer to managing MS fatigue: everyone is different, so the way you manage your MS fatigue probably won’t be the same as someone else’s. However, this section will help you to consider and deal with the things that make MS fatigue worse and provide a few suggestions for managing MS fatigue. Some useful tips are below: Use a fatigue diary. Keeping track this way can help you understand the ways you experience MS fatigue (time of day, description of activity done at that time when fatigue arose). You can give yourself a score 0-10 and add any comments. By looking at your fatigue diary alongside your general health and any medications you are taking, you and your healthcare team might be able to see certain things that seem to make your MS fatigue worse. By finding patterns in your experience of MS fatigue, solutions can then be discussed and put into place.Improving sleep. Lack of sleep might be the main cause of your MS fatigue, or it may be just one of several causes. There are many things that might disturb sleep:muscle spasms or restless legspainneeding the toiletinsomniatoo much caffeine or alcohol, particularly if it’s close to bedtimenoisetemperatureanxietydepressionlightmedicationCompleting a sleep diary (or including sleep in the fatigue diary mentioned above) can help identify triggers and strategies that you and your healthcare team can put in place. For example, it may be useful to follow a sleep hygiene program, or to consider medication to help with spasms, depression or the need to go to the toilet so often.Address any underlying infection. Infections like the common cold or bladder infections often lead to unexpected tiredness, particularly if they raise your body temperature. If you have an infection it is important to get it treated quickly, to rest, drink plenty of fluids and keep your temperature down.Consider the impact of medications on MS fatigue. Many drugs commonly used to manage MS and related symptoms have side effects that can add to MS fatigue. If it’s a new medication, or you are changing doses or changing the time of day you take the drug, your MS fatigue levels may also change. If you think your medication is influencing your levels of MS fatigue, then speak to your doctor. They will be able to look at all the medications you are taking (including over the counter drugs and herbal products) and make changes to see if you experience a positive (or negative) change in your MS fatigue levels. Sometimes this can be trial and error, but many people find it helpful. Remember, you should not adjust your drugs without advice from your healthcare team.Changes in mood: Anxiety, depression and mood changes are not uncommon in MS, and they can cause feelings of fatigue. Equally, MS fatigue can also influence mood. It can be difficult to untangle the two issues—they might be affecting each other. There are many options for treating these emotional symptoms. Successful treatment might help lessen MS fatigue and, in turn, finding ways to minimize MS fatigue can help relieve stress and anxiety. Mindfulness can be very helpful in managing emotional symptoms and many people with MS report it has a positive impact on their MS fatigue.Be aware of the impact of other health conditions: MS can cause a wide variety of symptoms, but it’s important to remember that not every health issue is necessarily related to MS. Other possible causes, such as menopause, anaemia and thyroid issues might also be considered. All of these can cause MS fatigue, or make it worse. Seek advice from your healthcare team if you are unsure or experience symptoms that appear unrelated to your MS. Other lifestyle changes strategies to help manage MS fatigue:Making changes: Consider what adjustments you and others feel able to make. Try to find a balance of activity and relaxation, exercise and rest, work, and social life. Remember that some of the changes you make could involve family, friends, or work colleagues. Prioritizing and planning: Changing a routine is not always preferable, however prioritizing activities can mean saving energy for the things you really want or need to do. If MS fatigue means that not everything can get done in a day, concentrating on the most important tasks can help. One way you might do this is to list all the activities you do in a typical day or week: mark which ones are important to you, which tasks you would rather not to do, which tasks can be done less often and those that do not need to be done at all. Planning can mean, for example, building in ‘down time’ to recuperate if your MS fatigue makes you tired at a similar time each day. If you have a particularly tiring task ahead, a plan lets you make space for rest before, after, or both.Some simple tips can make planning easier:Set yourself targets, but keep them realisticTry to balance your day between easier and more difficult tasks, making time to restSplit a large or heavy task into bite size stages, to be done a bit at a time. Share your plans with others, especially your family and friends and, if possible, your work colleagues.Exercise: It almost goes against common sense to exert yourself if you experience MS fatigue, and MS symptoms can make exercise difficult. However, exercise helps to keep your body working at its best. Exercise can improve strength fitness and mood and stop muscles from losing strength over time (deconditioning). Deconditioning can be painful and make mobility or weakness problems worse. Lifting mood, building strength, and avoiding deconditioning can all help with managing MS fatigue. If heat makes your MS fatigue worse, you might want to plan your exercise to avoid long sessions which can lead to overheating. Alternatively, some people find water-based exercise helps maintain a steady temperature. Cooling wristbands may also help.Managing fatigue at work: You might need to ask your employer to make some changes, such as more flexible hours, regular rest breaks, arranging a parking space closer to the entrance, or looking at your work environment to make sure it is accessible for you. You don’t have to tell your employer that you have MS, but if you do decide to, this can help your employer understand MS and, in turn, support you better.Healthy eating and drinking there is no specific diet for people with MS, however what you eat can make a difference. For example, large, hot meals can make MS fatigue worse and caffeine or sugary snacks may have an initial ‘pick-me-up’ effect but can leave you feeling more tired later. Some people with bladder problems drink less to reduce their need to go to the toilet. Not drinking enough water, however, can lead to dehydration which can cause MS fatigue. You may want to avoid drinking lots too close to bedtime.Organizing living and workspace: Keep items that you use regularly within easy reach to avoid frequently getting up and down. Store lightweight items that are rarely used in higher spaces and store heavy items that you use less often at a lower level. Keep work areas as uncluttered as possible. Make sure the lighting is good, to avoid eye strain as this can increase MS fatigue. Ask for help from your healthcare team. They may be able to refer you to an occupational therapist who can help you assess the spaces and equipment you use, at work and at home and may suggest adaptations or equipment that could help.Drugs for MS fatigue?Although there are currently no drugs indicated specifically for MS fatigue, certain drugs indicated for other conditions are sometimes prescribed. There is, however, limited evidence for their effectiveness, and what evidence there is suggests they are less effective than the MS fatigue management tools discussed previously. Nevertheless, some people find these medications helpful. Examples: Amantadine: indicated for Parkinson’s disease (Unfortunately, research regarding its use in treating MS fatigue is not conclusive) Modafinil: indicated for narcolepsy (several small studies looking into Modafinil to manage MS fatigue , but have shown no or limited results , however a recent meta-analysis showed that Modafinil may have some benefit to MS fatigue ) side effects : insomnia and headache. 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