If you have MS, chances are really good that you have MS-related fatigue — about 80 percent of people with MS do according to the National Multiple Sclerosis Society of America.
Like almost everything else about MS, the symptoms and severity of fatigue vary from person to person. Though you may feel like you’re wearing a lead blanket or walking in quicksand, to family, friends, coworkers and others, you probably look just fine.
But there’s a big difference between being “tired” and having MS-related “fatigue.” The result can be troubling as others may suggest that you simply need to get more sleep, take a nap or worse, believe that you’re being lazy or just aren’t trying hard enough.
Describing how your fatigue makes you feel x— physically, mentally and emotionally — may help them better understand the often unavoidable role it plays in your life and how it may find its way into their lives, too.
Here are some tips that may help you do that:
First, know your fatigue. Just as no one knows what causes MS, no one knows for sure what’s behind MS fatigue. According to the National Multiple Sclerosis Society, there is currently no test that accurately measures fatigue, let alone one capable of making any objective conclusions about it.
Experts believe that MS fatigue may be caused by a number of factors, including muscle spasms and spasticity, sleep deprivation, depression, extra energy expended to work around MS-related debilitation and the effects of demyelination. Even the drugs prescribed to manage MS symptoms may contribute to fatigue’s effects.
There is also what is known as “lassitude,” a type of fatigue unique to multiple sclerosis marked by a daily occurrence of it that frequently begins early in the day and worsens as the day progresses, comes on suddenly, is frequently more severe than general fatigue and is more likely to interfere with daily activities.
MS fatigue is a complex challenge that’s difficult to explain and understand no matter who you are, especially without background or context. Sharing written printouts or websites that provide the background may be a good first step toward better understanding it.
Explain the difference between tired and fatigued. Lots of people — with and without MS — may feel tired due to a poor night’s sleep, overexertion, stress, etc. More rest normally alleviates that, along with some of the physical symptoms of the disease. This is not the case with fatigue. Though its severity may change from day to day, it doesn’t go away, possibly because it’s caused by MS and its related symptoms.
Bring fatigue to life. Share with others what fatigue feels like, not just what’s hard to do because of it. For example, Britain’s Multiple Sclerosis Trust suggests finding an experience that others have had before — such as a hangover, jet lag or the flu — so they may be able to recognize the physical sensations and challenges associated with it. Ask them to try and remember their worst hangover and how it made them feel to get out of bed, to get dressed, to fix breakfast and go to work. Then ask them to remember their worst case of jet lag and how that made them feel at every step of their day. Do the same with the flu. Then explain that MS fatigue often feels many times worse than each of those.
When all else fails, try spooning. The Spoon Theory suggests that “healthy” people have an unlimited, ever-renewing source of energy, while those with chronic conditions such as MS (and fibromyalgia, lupus and others) have a limited supply that must be carefully planned and used every day.The theory uses a dozen or so spoons to represent a typical day’s worth of energy for most people. Hand those to whomever you’re trying to explain fatigue to and tell them they now have MS like you do. Ask him or her to count out the spoons and explain that these are all the spoons they will get for the day. If they ask for more, tell them no.
Then ask him or her to share in very specific details how they spend their mornings and will spend those spoons. Take away one spoon for major tasks, such as getting showered or fixing breakfast, but also for the minor ones those with MS-related fatigue often experience, like just opening your eyes or getting out of bed, buttoning a shirt sleeve or simply walking down the stairs. Explain that she/he may be able to power their way through the day, but it will cost them come tomorrow, depleting those spoons even faster.
It’s a powerful, tactile demonstration that may help others more completely understand the challenges you’re facing. For a downloadable/printable file and a more complete explanation of The Spoon Theory, go here.
Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.