Beyond Tired – Coping with MS Fatigue

If you’re a member of iConquerMS, you know that we ask you questions about your MS symptoms.  According to the National MS Society, 80% of people with MS experience fatigue, and over half rank it as one of their most troubling symptoms. 

Fatigue can be either physical or cognitive, or both.  Physical fatigue may affect an individual’s energy and motivation.  For example, one’s limbs may feel heavy and hard to use.  Cognitive fatigue, on the other hand, affects concentration.  Individuals with cognitive fatigue may have difficulty following a conversation or thinking of words or numbers. 

Nearly everyone feels overtired or overworked from time to time, but this is usually solved by a good night’s sleep.  Fatigue is an unrelenting exhaustion that develops over time, is more intense, lasts longer and isn’t relieved by rest. 

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In some cases, fatigue is “secondary” to an underlying cause and may be effectively addressed by treating the source. 

Secondary Causes of MS Fatigue

depression written out

Depression – Research shows when depression and fatigue occur together, fatigue may be effectively addressed by treating the underlying depression.

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Sleep Disorders – The prevalence of sleep disorders in people with MS is high. Exhaustion from a lack of sleep is a contributing, if not a causative factor in MS fatigue.

medications

MS Medications – Fatigue is a side effect of some disease modifying therapies. Drugs taken for MS symptoms can also contribute to fatigue.

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Other Medical Conditions – Sometimes, people with MS have other medical conditions, such as infections, anemia, or thyroid conditions, which can also increase fatigue.

Beneath these secondary causes is “primary” MS fatigue, called lassitude, the cause of which is unknown.  Lassitude has a number of specific characteristics that help distinguish it from secondary MS fatigue. 

fatigue vs lassitude text

Lassitude symptoms

  • Occurs on a daily basis

  • Is more severe than secondary MS fatigue

  • Is more likely to interfere with daily activities

  • Often occurs early in the morning, even after a restful night’s sleep

  • Comes on suddenly and worsens as the day progresses

  • Is aggravated by heat and humidity

No matter what form of fatigue an individual with MS may experience, this overwhelming tiredness can affect anyone with MS, regardless of physical disability, and occur at any time in the course of the disease.  People with MS may also find that fatigue worsens their other MS symptoms.

Researchers are working to figure out the exact cause of MS-related fatigue.  There is evidence that the following body systems could be involved:

Immune System

Endocrine System

Central Nervous System

Cytokines are chemical messengers that are secreted by cells in the immune system.

Dehydroepiandrosterone (DHEA) is a hormone that your body naturally produces in the adrenal gland.

Other studies suggest that MS fatigue stems from damage to the central nervous system caused by demyelination.

Researchers in Germany found cytokine levels are significantly higher in people with MS that have fatigue.

Researchers in Spain found that levels of DHEA are lower in people with MS with sustained fatigue.

Swiss researchers suggest that a reduced transmission of electrical signals in the brain may play a role.

This suggests that fatigue is at least partially mediated through activation of cytokines.

This suggests that the endocrine system may play a role.

Canadian researchers suggest that nerve loss is a contributing factor.

How is MS fatigue treated?

In some cases, drugs may be used to treat fatigue.  However, medication is not a solution to fatigue on its own.  Because different factors can cause or add to MS-related fatigue (like depression or sleep disorders), anti-fatigue medications should be used in conjunction with treatment for these factors (when applicable).  It’s also important for people with MS to see their physician regularly to ensure their disease is under the best control possible.

Anti-Fatigue Medications

Modafinil (Provigil) is used to treat fatigue and sleepiness.  Studies suggest that low dose modafinil significantly improves both, and is well tolerated in people with MS.

Armodafinil (Nuvigil) is a medication that is similar to modafinil and is also prescribed for the treatment of MS fatigue.

Amantadine (Symmetrel) is an antiviral medication that has been used to treat MS fatigue since the 1980s, although its benefit in this regard is not well documented.

Methylphenidate (Ritalin) is a central nervous system that can be helpful in reducing MS fatigue.  Studies are underway to confirm this benefit. 

Dextroamphetamine (Dexedrine) is also a stimulant medication.  Its effects on MS fatigue are similar to those of methylphenidate.

Research suggests that aspirin may lessen fatigue in people with MS. More study is needed to understand the benefit and risk of aspirin treatment for people with MS.

There is evidence that Cognitive Behavioral Therapy (CBT) is helpful in relieving MS fatigue.  CBT is a common form of psychotherapy where people learn to change their unhelpful thoughts and actions.  The core premise of CBT is that thoughts, feelings and actions are connected.  By working on negative thoughts and behaviors, people can feel better and handle challenges more effectively.

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A number of alternative therapies may provide some benefit for MS-related fatigue. 

alternate fatigue option chart

Strategies to conserve energy are often helpful in managing fatigue.  An analogy can be made for people with MS between bank accounts and energy levels.  Both benefit from the same rule of thumb – less money, or energy, used now means more will be available later on.

Energy Conservation Strategies

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Be efficient while performing household duties. 

Avoid triggers that may cause fatigue.  

triggers to avoid that cause fatigue text

MSAA’s Cooling Distribution Program offers cooling vests, smaller products to wear under clothing and other accessories to help people with MS keep cool.

Healthy living can also make MS fatigue more manageable.

eat well
Eat a well balanced, healthy diet
feet walking outside
Get regular, moderate exercise
Avoid the hotter periods of the day
Try exercising in water
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Manage stress
Adjust expectations and limit daily to-do lists
Try relaxation techniques
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Support groups can be a source of comfort and camaraderie

Managing fatigue in MS is complex and requires teamwork among people with MS, their family, caregivers and healthcare providers.  iConquerMS brings together all of these individuals, in collaboration with researchers, to understand MS and search for solutions.  Did you know that network members will be instrumental in testing the effectiveness of a new CBT treatment for MS fatigue?  Click here to learn more!  Would you like to be a part of this and other exciting research opportunities for people with MS?  If you haven’t already, please consider joining iConquerMS today! 

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