Speaker Series Webinar: “Fatigue”

According to our patients dealing with GBS, CIDP, and MMN:

• 68% say fatigue interferes with physical functioning
• 72% say they are bothered by fatigue and how they feel physically
• 75% have trouble finishing tasks of fatigue

Learn more about our patient registry by visiting: www.gbs-cidp.org/research/gbscidp-patient-registry/.

Fatigue is not normal but pathological. It is exhausting. It is the lack of energy that is present not only after activity, but presents continuously.

• Pathological: indicating a disease, not the disease itself, but the science of the disease

Tiredness is normal and can happen to everyone especially after a long period of physical or mental activity. You can completely restore yourself with rest; it is not continuous.

There are two types of fatigue:

1. Peripheral: the impairment of peripheral nerves can cause fatigue
2. Central Nervous System (CNS): personality, life experiences, reactions to stress, and/or post traumatic experiences can induce fatigue

• Fatigue happens mostly in chronic diseases, but will occur in acute conditions like GBS
• Fatigue is subjective and not always biological
• Depression, anxiety, and a lack of proper sleep can all contribute to fatigue
• Can not be objectively measured, similar to pain

Yes, inflammation contributes to fatigue, especially non-neurological conditions like metabolic syndrome.

• For chronic conditions: inflammation contributes to cytokines that affect our brain, muscles, and body that cause fatigue

• It is not always related to impairment or muscle weakness.
• Less activity does not mean less fatigue because physical activities can decrease fatigue like aerobic exercises.
• Be active!

It is the Fatigue Severity Scale (FSS) comprised of 9 questions aimed at trying to quantify fatigue levels. Originally, it was made to study sclerosis. So, the RUSH FSS was made to compare different inflammatory neuropathies. Yet, both are used for looking at the epidemiology of the disease.

• There is no biomarker for fatigue.
• Yet, for some conditions an EMG is performed to measure the amplitudes of motor potentials as a measure of fatigue such as Myasthenia gravis
  • But an EMG is currently not used to measure fatigue in CIDP and MMN

• The change in ability and weakness are not correlated with fatigue.
• Fatigue is not a measure of disability because it can come and go.

• Fatigue should not be an indicator of increasing or decreasing Ig dosage.
• In addition, if a patient is treated with Ig for too long, their fatigue may increase.
• Ig treatment should be determined on an objective measure of disability and weakness.
• Lastly, the absence of fatigue does not indicate a green light to stop Ig therapy!

Here is are a list of methods to help with fatigue:

• Patients with other metabolic conditions like diabetes should work to improve their other conditions because it will also improve their fatigue
• Exercise such as swimming and cycling
• Cognitive Behavioral Therapy
• Anti-Depressants
• Reducing Alcohol and Caffeine

It is possible that covid can produce this condition, but it is not correlated to fatigue.

“I cannot recommend this to anyone because we don’t know if it is efficacious, and we do not know if it is safe for this patient.”

• Most clinical trials measure disability and weakness rather than fatigue because it is less measurable.
  • Disclaimer: There is no guarantee that fatigue will not completely go away.
• FCN blockers and Complement inhibitors are currently being researched and could possibly help.

There are no specific drugs to treat fatigue, yet some medications can induce fatigue. So, be cautious and consult your doctor before taking any medication.

• The Mediterranean diet is always good for any condition!  
• Rice and fish are good foods to protect from developing inflammation

• Keep a diary of the different events where fatigue occurred while recording the level of fatigue to compare.
  • Journaling can help you understand how fatigue may be induced.
• Explain your stress, sleep habits, and medications that can impact fatigue. 
• Explain what you are missing, such as obligations or social activities, to provide a wholistic perspective.

There is no official data to answer this question.  

Yet, giving social support has been proven to impact a patient’s quality of life.  

“One piece of advice I have is to encourage them to be active and do different things rather than sitting at home thinking about their disease.”  

While both the physical and mental condition of patients are affected, depression, anxiety and other mental illnesses can negatively affect fatigue. I would recommend seeing a psychologist. 

• I would recommend starting very slowly and then increasing their level of activities very slowly, especially those with significant weakness. Physical therapy is definitely a solution.

• Results will be long term and not immediate. 

• Yes, because you are able to do more movements in water than on land.
• Hot water is not good because it can cause inflammation and can worsen a patient’s condition. So aqua therapy is good with cold water.

I cannot be sure, it should be tested, yet it helps with pain.

There is no evidence that this can help. I believe that extra oxygen can produce oxidative stress and become problematic for cells.

• Some patients can have some residual neurological deficit, so not everything was improved after the acute phase of GBS.
• Even patients with no pain still report having fatigue. Some papers report that 40% of patients with GBS have fatigue after 20 years.
• These conditions are life-threatening, so it is real trauma, making the psychological component important to one’s fatigue.