“I’m SO tired”
Fatigue, MS and fighting back.
Fatigue is one of the most common symptoms of multiple sclerosis and MS fatigue is very different from the tiredness or exhaustion that people without the illness may have. The tiredness I sometimes feel is out of all proportion to any activity I may have been doing and often involves a sudden loss of energy and not being able to continue any activity. Fatigue can be either physical or mental or both at the same time and can not be 'worked through', as can sometimes be done by people who don't have MS. Recovery time tends to be much longer. I find that fatigue symptoms gets much worse if I have had a bad night’s sleep or if I am incubating a cold or other infection. Not every day but on a bad day, I wake up tired and tiredness stays with me all day, unless I consciously manage the symptoms.
First of all, managing of fatigue is about making the most of your available energy by learning to pace yourself and prioritising what you want/need to do. It is not selfish to set your own realistic goals and communicate them to those around you. In a busy family setting, as a parent it is sometimes impossible to make your voice heard or have time to yourself, whether you are disabled or not. Being disabled and fatigued sometimes makes it worse, unfortunately. Communication is key – your family love you and will help you feel better and achieve more, if they know how you feel and what you want!
For me, to avoid being regularly floored by fatigue, I really have to maximize the energy reserves I have access to on a daily basis by doing these simple things for myself:
Avoid changes in temperature (heat sensitivity)
Changes in temperature, especially over-heating cause my fatigue to become a hundred times worse. Thankfully these effects are usually quickly reversed when I cool down or when the temperature falls. Cooling techniques can reduce problems, so a hat, ice cream and plenty of cold drinks on a hot summer’s day, please.
Poor sleep is common in MS and about half of people are affected. Ways to treat this involve finding out what might be causing poor sleep and developing good sleep habits. Over time good sleep can help you improve your energy levels and quality of life. I find that an hour-long session of cycling before bed helps me sleep and staves off spasms in the night – I’m tired for the right reasons!
Try to have a positive mental attitude and remember you are not alone...
It is common for people with MS to feel low in mood – being ill and disabled really sucks! Feeling low can drain energy and motivation and exacerbate fatigue. To break the cycle of low mood things that help might include:
Doing more enjoyable things, such as meeting friends, shopping, taking regular exercise or starting a new activity. Sometimes, getting out of the house is all it takes!
Talking issues through with others - whether with a professional, a support group or just a loved one to whom you feel able to open up
Finding ways to think more positively, whether informally or by following approaches such as mindfulness or CBT. Reading and listening to music can sometimes help – yes and watching a bit of tv too!
Realizing that everyone has problems and is suffering too – you’re not alone, no matter how it sometimes feels.
A poor diet or eating habits can leave you lacking the fuel you need to get through the day. A healthy, well balanced diet with plenty of fruit and vegetables and not too much fat, salt or sugar provides the best energy levels. Trying to maintain a healthy weight is also helpful as being overweight or underweight can increase fatigue. Caffeine in small doses can help when energy drops – a couple of strategically-timed lattes every day make me feel much better! I also find that dispersible vitamin C tablets give me a boost of energy, but what works for me might not work for you! Just listen to your own body and figure out what really works for you.
Exercise, Exercise, Exercise!!
Exercising every day is the ONE thing I can do for myself that helps me keep fatigue at bay and strive towards as healthy a lifestyle as possible. The restorative impact of exercise is not a surprise because it’s well known that a lack of activity will increase fatigue and on the other hand, exercise releases endorphins (the body’s own feel-good chemicals which bring about feelings of well-being in the brain). Whereas muscles that are not used regularly become weakened and require more energy to do simple tasks, exercising maintains muscle, bone strength and joint flexibility leading to more ability. Best of all, I have found that daily exercise increases my stamina day on day, which helps me to fight back against the debilitating fatigue of MS. Of course, as a disabled person, getting the chance to exercise depends entirely on the availability of the right inclusive equipment, and the kindness and support of those around me. The raison d’etre of EfA is to improve quality of life for anyone with a disability, by campaigning to make sure everyone can benefit from better health and quality of life through exercise.
What causes fatigue in MS?
The causes of fatigue in MS are not well understood. Fatigue is thought to result from different factors, partly caused by multiple sclerosis itself (known as primary fatigue) and partly by other factors (secondary fatigue) that affect people with MS more than those without the condition.
Primary fatigue is thought to be due to nerve messages from the brain and spinal cord having to cope with areas of damage caused by MS. It takes more energy for your body to operate and this leads to a build-up of fatigue. Fatigue is often associated with weakness in muscles, which again require more energy. Heat can increase fatigue in MS and you may find that your symptoms get worse during spells of hot weather or even after a hot shower or meal.
Secondary fatigue is caused by the effect of living with MS. For instance, MS symptoms such as depression, being in pain or by having sleep disturbed by spasms or needing to go to the toilet more often can all make fatigue worse. Fatigue may also occur as a side effect of various medications or be the result of inactivity, stress, poor diet or an infection. If you have other medical conditions, this can also cause or worsen fatigue.
Fatigue for many people is the result of a combination of several factors. Treatment should involve trying to identify the factors that add to your fatigue and developing an approach to manage these.
What does MS fatigue feel like? People with MS describe how fatigue affects them....
"It reminds me of falling into quicksand/a swamp - it’s a viscous, heavy, pulling feeling, but if I try to fight it, it hurts like hell and robs me of breath."
"Fatigue feels like being weighed down, as if you are trying to walk up to your neck in a deep, muddy river in heavy, wet clothes carrying shopping bags full of rocks."
"Fatigue feels as if I am an inflatable, and someone has pulled the air-stopper out!"
"Fatigue leaves me feeling dulled and tired. I find it hard to concentrate and to absorb new ideas, and I’m often confused, searching for the right word, and forgetting things."
"Some days I can almost keep up with my get up and go. Other days I can’t even get up."
"What I find is that no one, but no one, who doesn’t have fatigue from MS has any idea what it’s like."
Quotes taken from the MS Trust book Living with fatigue