Krupp’s Fatigue Severity Scale
Many studies of MS-related fatigue have used the Fatigue Severity Scale to identify fatigued patients. Initially designed to identify common features of fatigue in both MS and lupus patients, the Fatigue Severity Scale assesses the impact of fatigue on multiple outcomes, with a physical focus.58 Each of 9 responses is provided on a 7-point Likert scale. Prior studies have shown acceptable internal consistency and stability over time, and sensitivity to change afforded by clinical improvement. The Fatigue Severity Scale has been shown to differentiate between subgroups of patients with MS, chronic fatigue syndrome, and primary depression. Moreover, the scores correlate with other scales commonly used in MS, including the Modified Fatigue Impact Scale and Fatigue Descriptive Scale.48
New Hope For Treatment Options
Some of those drugs work by suppressing the immune system, which may slow down MS and decrease relapses, but may also put patients at risk for infections and other illnesses, Dr. Scherz says. Depending on the drug, even after discontinuing the medication, it can take months for the immune system to bounce back.
Fatigue Makes Simple Tasks Feel Impossible
For me, when fatigue sets in, it feels like my entire body is weighed down. Like Im submerged in an invisible layer of quicksand that makes every move extremely arduous. The simplest of tasks becomes incredibly difficult. I could be lying on the couch and just trying to reach for the remote control can seem like a near-impossible task. Thats something that I dont think people understand. Its not just that Im too exhausted to go do something, Im too exhausted to do anything. Simple tasks like taking a drink of water or going to the bathroom become astonishingly difficult for me.
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Expending All Our Energy
A common meme on the internet proclaims that people with multiple sclerosis expend 5 times as much energy as a normal person. While I havent seen a reference to any science behind that, its still a great way of explaining what fatigue feels like to us. It takes so much for us to do something that others might take for granted. If you have or know someone with MS, then youve no doubt heard about the Spoon Theory, another great description of what its like to live with MS that speaks specifically about fatigue.
Axonal Loss And Altered Cerebral Activation
As conventional measures of T2 lesion volume and atrophy have fallen short in providing a basis for fatigue in MS,20 many investigators have relied on non-conventional neuroimaging techniques to shed further insight. The demonstration on positron emission tomography of decreased regional glucose metabolism in the frontal cortex and basal ganglia of fatigued MS patients has suggested that neuronal dysfunction in these regions may play a role.21 Magnetic resonance spectroscopy studies have shown significant reductions in N-acetylaspartate/creatine ratios in multiple brain regions among fatigued MS patients in comparison to non-fatigued MS patients, suggesting axonal loss as a contributing factor.22,23 MS-related fatigue also may arise at least in part from compensatory reorganization and increased brain recruitment, as functional MRI studies that have demonstrated increased volumes and patterns of activation in the cingulate gyri and left primary sensory cortex in fatigued MS patients compared to non-fatigued patients.24
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Engage In Regular Physical Activity
I encourage exercise for my patients, says Conway. In my experience, it can make fatigue worse at first, but if a person can get over the initial hump, it can actually improve fatigue, he says.
If youre not sure how to get started with exercise or need some help identifying exercises that will improve your fitness without wearing you out, trying working with a physical therapist or a personal trainer who is knowledgeable about MS.
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How To Describe Ms Fatigue To Others
It can be complicated to describe your MS fatigue to friends, family, colleagues and healthcare professionals, but helping others to understand can make your daily life with MS fatigue less frustrating.
Sometimes friends and family may notice the effects of MS fatigue. For example, a relative might notice that you are walking more slowly later in the day, or they may notice that after completing certain tasks you become much slower in responding to conversations. Seeing the effects of MS fatigue can help those around you to offer assistance and support.
There will be times when your MS fatigue is not obvious to others, because it is an invisible symptom. Using analogies or metaphors to describe MS fatigue can help friends, family and colleagues understand and relate to what you are experiencing.
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Factors That Contribute To Your Fatigue
The fatigue thats unique to MS is called lassitude.
80 percent of people with MS experience this overpowering feeling of tiredness in body and mind.
We dont know the exact cause of lassitude, but we have identified many factors that can add to your feeling of fatigue.
- Insufficient sleep, which can be related to other MS symptoms like bladder urgency, muscle spasms, or pain. You might also be getting too much screen time before bed, or facing an underlying sleep problem like sleep apnea or restless leg syndrome.
- Depression or anxiety, which are common in people with MS. These mental health challenges can be draining for anyone, but they may lead to a vicious cycle for someone with MS. Your depression leads to feelings of fatigue, which amplifies your feelings of depression, and so on.
- Muscle stiffness or weakness, which requires you to use extra energy to move around.
- Certain medications taken for MS or other conditions
- Heat exposure, such as sitting outside on a warm day.
Once youve begun to manage all the issues that contribute to your tiredness, you can tackle MS fatigue.
With the help of your healthcare team, you can identify which factors contribute to your fatigue, and what tools and strategies can be of aid. You can also use the “4 P’s” to make daily activities easier and less draining. We’ll explore both approaches below.
Types Of Multiple Sclerosis
There are three main types of MS that are characterized by the course of disease:
While MS itself is generally not fatal, complications of advanced disease can be. Loss of brainstem function can lead to respiratory failure and disability can significantly reduce activity levels, increasing the risk for cardiovascular disease, pneumonia, sepsis, and uremia.22 As a result, the life expectancy for people with MS is about 7 years less than people without MS .2,23
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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 and partly by other factors that affect people with MS more than those without the condition.
Primary fatigue is thought to be due to nerve messages from your brain and spinal cord having to navigate the areas of damage caused by your MS. It takes more energy to send and deliver messages to other parts of the body, like the muscles in your arms and legs, causing a build-up of fatigue.
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 which can make you feel tired and lacking in energy. Once youre aware of these factors, you can review whether they apply to you and begin making changes.
How Your Doctor Can Help
You need to let your doctor know all about your fatigue symptoms. This can help them see the patterns in your day-to-day life.
âDonât just say âI’m fatigued,ââ Hou says. âExplain what that actually means, like âI’m fatigued and therefore I can’t finish showering,’ or ‘I avoid showering because itâs too tiring.â Tell us if you canât finish vacuuming, or have to take a nap at two o’clock every day.â
Once theyâve gathered this info, they can help you come up with a plan. They might suggest that you:
Above all, reach out. Talk to your doctor, your loved ones, and others with MS for connection and help with your fatigue.
âAs with everything MS, having a good support system is of great importance,â Serra says. âRecognizing that fatigue is a common and disabling symptom in MS, and that you are not alone in experiencing it, is a good first step.â
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What If Oral Medications Wont Work For Me
Since Tecfidera did not work for me, my neurologist sent me to an MS specialist who then put me on Ocrevus, an infused medication. While I did not have any new lesions while on this medication, I found myself fatigued, in a lot of pain, and bedridden for the six months between infusions. I can only share my experience.
As you know, MS is different for every person. The same holds true for the medications. Many people swear by Ocrevus and have shown major improvement while on it. I felt better once it left my system, so I swore off medications for a little over a year.
My most recent trial was Tysabri, an infused cousin to Ocrevus. Ive been taking it for almost one year. It took about six infusions for my body to adjust, but after that time, it was okay. Other infusion medications for MS include Lemtrada and Novantrone.
Some choose the oral route because its easier and much less time consuming than sitting at a hospital for hours hooked up to an IV for an infusion. I have no experience with the next type of medication, self-injectables, but I have heard and read mixed reviews.
If you choose a self-injectable treatment, there are some tips Ive found to help make you more comfortable :
- Rotate your injection site to protect your skin
- Take treatment as prescribed
Always remember to talk to your doctor or healthcare professional about how to exercises or other resources to help minimize your pain and help you feel more comfortable.
Feeling It: Tips For Talking To Others About Ms Fatigue
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 youre wearing a lead blanket or walking in quicksand, to family, friends, coworkers and others, you probably look just fine.
But theres 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 youre being lazy or just arent 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.
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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 whats 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.
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I Wish I Had More Tips For Leg Weakness
This is a shorter article and I wish I had a few more tips for leg weakness, but thats all I have for right now. Since starting to work out, my legs are so much stronger, but they do grow weak easily, and sometimes, that just cant be avoided. Thats when I take advantage of resting and try again the next day.
What Causes Fatigue In Patients With Multiple Sclerosis
The exact cause of MS-related fatigue is still unknown. There are several theories on the subject:
- One theory is that fatigue is related to the general activation of the immune system. Chemical messengers are called cytokines these levels are higher in patients with MS and may be higher still in patients with fatigue. One way of describing this is that you may feel like you have a virus all of the time.
- Another theory is that people with MS may have to use more parts of their brain to do the same task as someone without MS in essence, they are working harder.
- Another theory is that fatigue is related to reduced electrical transmission of signals in the brain.
Whatever the theory, we know that fatigue from MS is a very real part of the disease.
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What Is Multiple Sclerosis
Multiple sclerosis, commonly known as MS, is a chronic illness that affects the brain, spinal cord, and optic nerves in the eyes. Vision, balance, muscular control, and other basic bodily functions have a risk of impairment due to MS. Everyone with the condition experience numerous symptoms. Some individuals just experience minor symptoms and might not require medical attention.
Others will struggle to get around and complete everyday duties. The immune system attacks myelin, a fatty substance that wraps around your nerve fibres to protect them. This is the main cause of MS.
The nerves will be harmed if myelin isnt present. Because of the impairment, the brain is unable to convey messages appropriately throughout the body. The nerves dont perform as well as they should to assist the body in moving and feeling appropriate.
Exercises To Strengthen Your Legs
Moves such as leg lifts, squats, and lunges are great exercises to strengthen your legs. I know it has drastically helped mine! Like I said earlier, if this is too hard on you to do on your own, simply hold on to something when doing leg lifts or lunges and if you need to, have a chair behind you when doing squats to catch you if you fall. Believe me its much nicer than hitting the floor! And remember to always take advantage of resting when you need it. Its so important to do that so that your legs dont completely give out. Find the point where you can push yourself, but not overdo it!
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Exercise Can Boost Energy
Certain types of easy exercise, such as gardening and yoga , have been shown to boost energy levels, reduce stress, improve joint range of motion, help manage spasticity, and increase strength. Because of its natural buoyancy, water allows many men and women with MS to perform exercises they cannot do outside of the pool. Water exercise helps increase flexibility, strengthen the upper and lower extremities and trunk, improve ambulatory skills, increase coordination and balance, and condition the overall body to raise endurance levels and lessen fatigue.
For more information on the benefits of aquatic therapy and aquatic exercise for individuals with MS, please visit MSAAs online aquatic center.
Medications Used To Treat Ms
Medications used for the treatment of fatigue can be helpful but are usually not the magic answer to curing fatigue.
Neurologists sometimes prescribe drugs such as the following to MS patients who need to manage fatigue:
Talk to your healthcare provider about whether one of these medications would be useful for you. It’s also important to understand that there are different strategies for taking these medications. It’s not an all or nothing deal.
For instance, a person with MS may only take their Provigil if they know they are going to have a long, grueling day. Another person may rely on daily Ritalin to manage fatigue.
These medications also have side effects, such as cardiovascular ones, which may not be safe for you.
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A Diagnostic Approach To Fatigue
An open ended question, followed by a series of more focused inquiries will often prove to be a productive approach. This should be followed by screening for other confounding conditions such as sleep disorders or depression. A systematic approach to the assessment and treatment of fatigue in patients with MS is summarized in Figure 1.
Tip : Limit Certain Drinks
Certain behaviors may seem to help with fatigue, but in the end, they may cause more problems than they solve.
Drinking a hot beverage may sound like a good way to wind down if youre having trouble sleeping, but coffee and tea typically contain caffeine.
Be sure to check whether your drink contains caffeine. It can prevent you from falling asleep, leading to fatigue the next day.
Similarly, while alcohol may help you feel sleepy after you first drink it, it can make it harder to get a restful nights sleep later.
Consider behaviors that may be contributing to poor sleep habits and fatigue and try to take steps to adjust them.
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What Does It Feel Like
Not everyone experiences fatigue the same way, and the feeling can be difficult to explain to others. In general, there are two types of MS fatigue: a general feeling of extreme tiredness and muscular fatigue.
MS fatigue is different from regular tiredness. Some people with MS describe the fatigue as feeling like youre weighed down and like every movement is difficult or clumsy. Others may describe it as an extreme jet lag or a hangover that wont go away.
For others, fatigue is more mental. The brain goes fuzzy, and it becomes difficult to think clearly. Fatigue may affect the eyesight, as well as your ability to speak without slurring your words.
MS fatigue is also distinguished by the following characteristics:
- occurs on a daily basis
- often occurs in the morning even after a good night of sleep
- tends to worsen as the day progresses
- is aggravated by heat and humidity
- may come on suddenly
People with MS fatigue may need to recharge their batteries with frequent rest and a short daily nap, but its also possible to plan and schedule your daily activities to help conserve energy.
To conserve energy, try these tips:
While conserving energy is important, too much rest can be counterproductive. Exercising daily is essential for maintaining muscle strength and building endurance. Try these exercises and activities for MS.
There are several other lifestyle changes and remedies that can help you battle fatigue. These include:
