How To Explain Ms Fatigue

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.

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, 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. 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., 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.

Describing Fatigue To Others

Attempting to describe fatigue to someone who has never experienced it before can be a thankless task. As an invisible symptom of MS, people often dont understand the sheer scale of what youre going through. Here, Jane from our Information Team offers some advice on how best to explain what you’re feeling to others.

What is it like to have fatigue and how can we explain fatigue to others who have never experienced it?

Fatigue is a common symptom in MS but seems to be invisible to most other people. This can seem incredible to the person who is experiencing fatigue as they may be leaning against the wall or holding onto their shopping trolley or the arms of their chair as if their life depended on it.

Would it be useful to be able to explain fatigue to other people so that they understood more about the difficulties and how much fatigue can vary from day to day or from morning to afternoon? Well, yes it would, but is this possible if theyve never experienced fatigue themselves?

Perhaps the best place to start is to tell people what it isnt. Fatigue is not sleepy tiredness. It wont be sorted out by having a good nights sleep or a kip in the afternoon. Of course, somebody can be sleepy tired as well as fatigued. For example, if theyve had trouble sleeping due to pain or spasms, then a good sleep will help that side of things but not really their fatigue.

But this just says what it is hard to do when you have fatigue. What does it actually feel like?

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Good Days And Bad Days

MS is an unpredictable condition. People with MS are used to having their sense of well-being change unexpectedly. Fatigue can come and go without any apparent reason, even after a good nights sleep. Sometimes that means schedules need to change, which can be frustrating for other people in your life. As one MyMSTeam member said, We all have the most amazing plans and then, WHAM, MS says, Oh no, we’re not doing that today.

When you make plans, it may help to let others know ahead of time that you cannot always predict MS fatigue. Explaining in advance how MS fatigue can feel and how it can sneak up on you may help them understand when you have to make last minute changes.

Take Breaks And Pace Yourself

Pacing yourself and taking breaks during the day can help you stay healthy, says Wentink.

When Im drained and continue to push, I think Im putting myself at risk for getting sick, he says. When I feel fatigued, I take it as a sign that I need to step back and take a break.”

Symptoms tend to get worse when severe fatigue sets in, says Wentink. I try to slow down before that happens because I dont want to bring on a relapse, he adds.

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Relieving Fatigue Through Cooling

Research has shown that nerves with damaged myelin are sensitive to changes in temperature. A rise in temperature may cause nerve conduction to be less efficient, whereas a reduction in temperature may allow more signals to be transmitted across a damaged nerve.

The idea of cooling people with MS to alleviate symptoms has been researched and practiced for many years, but practical methods of cooling an individual had not been perfected until the 1990s. At this time, MSAA and NASA joined forces to develop and test a cool suit.

Cooling someone too quickly such as taking cold baths or sitting close to the air conditioner can cause shivering and vasoconstriction. This reaction does not help to alleviate MS symptoms. By slowly cooling down the body, an individual with MS may experience improvement in areas of physical performance, cognitive processing, and motor function. Cooling also significantly reduces fatigue, helping a person with MS perform his or her daily activities.

Controlled cooling is now achieved through passive cooling garments. These are portable and allow the wearer to enjoy symptom relief indoors or out. Passive cooling garments, such as a vest and wraps for the neck, wrists, or ankles, use ice or gel packs to give people with MS immediate and simple relief from heat and certain MS symptoms. Some passive garments are dampened and chilled before use.

Overwhelming Disruptive And Difficult To Explain Fatigue Is The Most Common Ms Symptom

Everyone knows what it feels like to be tired. But MS fatigue is different from regular fatigue.

• It can come on suddenly, even after a good night’s sleep.
• It generally worsens over the course of the day.
• It tends to increase with heat and humidity.

Your MS fatigue is likely to feel different from anything you’ve felt before.

It may feel totally overwhelming at times, yet it remains invisible to other people. It can be one of the hardest symptoms for family, friends, and colleagues to understand.

You might find that fatigue interferes with every aspect of your life. To combat fatigue and take back control, get to know this symptom, factors that can worsen it, and ways to manage your energy.

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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.

Fatigue Caused By Disability

MS can cause problems with mobility and muscle control. Compensating for these disabilities requires greater energy and effort than would otherwise be necessary to perform daily tasks. When some muscles cannot perform certain tasks other muscles are used instead and the extra work can tire those muscles, leading to additional fatigue.

Usual treatment

Neurophysiotherapists and physiotherapists can demonstrate exercises to strengthen and maintain body functioning and there is a range of equipment available to help conserve energy and reduce stress on muscles and joints. Occupational therapists can suggest modifications to your home or workplace to improve your efficiency and reduce the effort involved in daily tasks. Regional MS Community Support Staff, friends, family members and other people with MS can be useful sources of practical advice on ways to reduce energy needs.

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Are There Other Causes Of Fatigue Besides The Ms

Obviously, people with MS can be tired for other reasons. For example, they may have sleep disorders that interfere with restful sleep. People with MS may have a condition called restless leg syndrome, where they feel that they have to move their legs to get relief. They may also have periodic leg movements, which is when legs kick involuntarily during sleep. Another condition affecting sleep is sleep apnea, which is also common among the general population.

Certain medications may affect sleep or cause fatigue. Alcohol or drug use may alter sleep or cause drowsiness. Sometimes, people have other medical conditions, such as infections, anemia, or a reduced thyroid function, which can increase fatigue.

Pathophysiological Concepts Of Fatigue

This article focuses on four main classes of potential pathophysiological mechanisms of fatigue in MS :

Pathophysiological mechanisms of fatigue discussed in this article. White and grey boxes represent classes of mechanisms and specific mechanisms, respectively directed arrows and circle-ended arrows represent direct and mediating effects, respectively. Due to space limitations, only one mechanism per arrow is shown see main text for other mechanisms. CNS, central nervous system DA, dopamine GM, grey matter NAWM, normally appearing white matter WM, white matter.

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No Amount Of Sleep Or Rest Helps

No amount of sleep or rest will help my fatigue. Maybe all I can do is sleep or rest, but that doesnt mean that more of that will fix the problem. Remember, MS-related fatigue isnt caused by something Ive done, its caused by damage to my nerves and brain.

Fatigue is something I encounter at some point every day of my life. Sometimes that means I will wake up fatigued, making it hard to get out of bed and start my day. Many times it will hit me in the afternoon. It can last all day or for a few hours.

How To Know Its Ms Fatigue

Even though fatigue happens in most people with MS, itâs possible other things could be dragging you down.

Non-MS fatigue, also called secondary fatigue, can happen when you have another condition such as:

• Mood disorders like depression
• Infections
• Thyroid issues

âIf youâre up at night because you feel like you have to empty your bladder often, or your sleep is disrupted because of loud snoring and frequent awakenings because of sleep apnea, or muscle cramps ⦠then itâs not surprising your day is hindered by fatigue,â Serra says.

You may also feel fatigued as a side effect of a medication youâre on, or from drug or alcohol use.

Most of these are issues your doctor can help you manage and treat.

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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.

Talking About Fatigue In The Workplace

Talking to colleagues at work about fatigue can be different from talking to friends and family. Some workplaces are more formal than others, and privacy issues are also a concern for many people with MS. Some things to consider:

• Is fatigue interfering with your job performance? If so, how?
• How much about your condition do you want to disclose?
• What is your goal?

If you choose to discuss your fatigue with colleagues or supervisors, it can be helpful to prepare carefully what you want to say. Here are some tips:

• Set a goal for the conversation, such as asking for flexible hours or time off, or communicating why you may seem subdued or inattentive.
• Explain MS fatigue in terms that are easy to understand, without medical jargon.
• Keep the discussion simple and straightforward.

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Fatigue In Multiple Sclerosis: Misconceptions And Future Research Directions

• Department of Health and Exercise Science, Colorado State University, Fort Collins, CO, USA

Fatigue is the most common and disabling symptom experience by people with multiple sclerosis . Up to 92% of PwMS are affected by fatigue, which strongly influences quality of life . However, fatigue remains poorly understood and PwMS continue to suffer from a lack of effective fatigue treatments. Despite significant effort to elucidate the pathogenic mechanisms of fatigue, current knowledge is limited. Several factors contribute to the lack of progress in fatigue research, but the most important factor is that fatigue is often not clearly defined or is used without meaningful measurements in clinical and research settings . Kluger et al. states: Current treatments are non-specifically targeted to a vaguely defined symptom with unsatisfactory outcomes. Providing further support to these statements, a recent Cochrane Review on exercise therapy for fatigue in MS concluded there are important methodological issues to overcome. Heine et al. reported most studies did not: explicitly include PwMS who experienced fatigue, use a validated measure of fatigue as the primary outcome, or target fatigue specifically. Berger questions whether MS related fatigue can be treated and improved with current disease-modifying drugs, e.g., amantadine, methylphenidate, and modafinil, without having a precise definition of fatigue.

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.

Also Check: What Causes Fatigue And Muscle Aches

Subjective Measurements Of Fatigue

A remarkable number of questionnaires have been developed to assess fatigue. They range in length from single-item scales , to multidimensional scales claiming to assess various dimensions of fatigue, such as physical vs. mental . Most of the items on these assessments are similar and correlate very well with each other. One major issue with fatigue questionnaires is the construct contamination that mars the validity and specificity of such scales . For example, fatigue questionnaires often include questions about tiredness and cognition, which are not always associated with fatigue .

Self-report questionnaires can be influenced by other symptoms of MS, require patients to make difficult reflective assessments, and are completely subjective. Despite these limitations, the fatigue severity scale and the MFIS are commonly the only measures of fatigue in many studies . Most of these studies were incapable of demonstrating responsiveness to changes over time to therapeutic interventions, likely because of a lack of specificity in the questions or underlying factors of MS that may be reported as fatigue. However, questionnaires will continue to have value, especially for measuring perceptions of fatigue, until quick and easy objective clinical assessments are available.

I Take A Daily Morning Dose Of Coenzyme Q10 Capsules Supplements From Holland & Barrett As Recommended By My Ms Nurse And They Certainly Do Work For Me And Others I Have Passed The Recommendation On To They Somehow Raise My Energy Levels In The Morning They Are Still Not Fantastic But Better With Them Than Without Dont Take Too Many Or You May Not Sleep Well

Vitamin D and omega 3

Diet

Other therapies

AcupunctureOxygen therapyAction Potential Simulation Therapy

We asked the MS community to share their 10 top tips for managing fatigue, they are…

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