Managing fatigue with NMOSD

Fatigue is a common and frustrating part of living with neuromyelitis optica spectrum disorder (NMOSD). It can affect your body and mind, making everyday tasks feel harder and draining your energy faster than expected, even on days when other symptoms seem stable.

Managing NMOSD fatigue often means learning what contributes to low energy and finding practical ways — along with medical support — to better protect and use the energy you have each day.

Why fatigue is common in NMOSD

Fatigue in NMOSD is influenced by several overlapping factors, with damage to the nervous system playing a central role. But other physical, emotional, and treatment-related challenges can further drain your energy, including:

• Pain: Pain from NMOSD attacks and nerve damage can interfere with sleep, movement, concentration, and daily routines. Constantly managing pain forces the body and brain to work harder, which can quickly deplete energy levels.
• Anxiety and depression: Anxiety and depression are common in NMOSD and may contribute to sleep and fatigue issues. These conditions can strain the nervous system, disrupt sleep, and reduce mental energy, all of which contribute to fatigue and low stamina.
• Repeated NMOSD attacks: Each NMOSD relapse can cause inflammation and injury to the brain, spinal cord, or optic nerves. Even after recovery, lingering changes may make the nervous system less efficient, requiring more energy to support basic functions such as movement, balance, and sensation.
• Medication side effects: Medications used to manage the disease can also contribute to ongoing NMOSD tiredness. Treatments that help prevent relapses or control NMOSD symptoms may cause side effects that include drowsiness, slowed thinking, or low energy.

How NMOSD fatigue can affect daily life

Daily life with NMOSD fatigue can be challenging, even when you’re in remission or not actively experiencing symptoms. Research shows that ongoing exhaustion affects both physical and mental health and is one of the strongest predictors of reduced quality of life in people living with NMOSD.

Exhaustion and low energy levels can lead to:

• difficulty completing routine physical tasks, such as walking longer distances, standing for extended periods, or keeping up with household responsibilities
• disrupted sleep patterns, including trouble falling asleep, waking frequently during the night, or feeling unrefreshed in the morning
• increased daytime sleepiness and low alertness
• a reduced ability to participate at work or in school, or in social activities or hobbies because energy levels are depleted
• greater emotional strain, including low mood, stress, anxiety, or depression

Energy management strategies for NMOSD

Managing fatigue with NMOSD often involves consistent lifestyle adjustments that help address secondary causes, such as poor sleep, pain, mood changes, medication side effects, and mobility changes.

Energy management strategies for NMOSD may involve pacing yourself, planning rest breaks, and more.

Pacing activities and saving energy

Pacing allows you to spread energy use more evenly throughout the day, rather than pushing yourself until exhaustion. This strategy may include breaking tasks into smaller steps, alternating activity with rest, and prioritizing essential tasks.

Planning rest breaks

Intentional rest is an important part of coping with NMOSD fatigue. Planning short recovery breaks before you feel completely drained can help prevent low energy from becoming chronic exhaustion.

Gentle movement and stretching

Gentle movement, stretching, or working with a physical therapist may help reduce unnecessary energy use. Low-impact activities, such as yoga, pilates, or swimming, can also help build up your stamina and energy levels.

Nutrition and hydration basics

Not eating or hydrating regularly can exacerbate NMOSD fatigue and intensify low energy. Eating balanced meals, spacing food intake throughout the day, and drinking enough fluids help support more consistent energy levels.

Creating a realistic daily routine

A flexible routine and realistic living space can reduce stress and help you conserve your energy. Changes may involve reorganizing your home or workspace to minimize unnecessary movement, keeping frequently used items within easy reach, and scheduling activities during times when your energy is higher.

Getting medical support

Alongside lifestyle changes, your clinical team plays a central role in NMOSD symptom management. Healthcare providers can help you identify the causes of fatigue and develop a plan to address it.

Your care team may support you by:

• keeping NMOSD disease activity under control by adjusting preventive therapies and managing relapses promptly to limit inflammation and residual damage
• managing pain using a combination of medications, physical therapy, or other approaches
• screening for mood changes, such as depression or anxiety, and referring you to a psychiatrist or mental health counselor for care
• evaluating sleep problems, including poor quality, excessive daytime sleepiness, or sleep disorders, and treating them with targeted therapies or by making lifestyle adjustments
• reviewing medications to identify possible side effects or drug combinations that may be contributing to low energy, and changing them when possible

How to talk to your doctor about fatigue treatment

Talking to your doctor about NMOSD fatigue treatment starts with raising the concern and clearly describing what you’re experiencing physically and emotionally, even if you’re unsure what’s related.

It may be helpful to explain when fatigue is worst, how it affects your ability to work, concentrate, or stay active, and whether it limits your routines even on days when other symptoms feel stable. You may also mention potential underlying causes, such as sleep problems, pain, stress, low motivation, or recent changes in mobility.

Managing fatigue with NMOSD often involves a combination of medical guidance and practical adjustments. Small, targeted changes can add up to meaningful improvements in how you feel and function each day.