Some people with neuromyelitis optica spectrum disorder (NMOSD or NMO) experience overwhelming exhaustion just doing normal daily activities. Fatigue can come on suddenly, making it hard to finish any routine tasks you need to do for the day. Describing this level of exhaustion to others, even those closest to you, is difficult, and many may not fully understand. This can leave you feeling frustrated, angry, or guilty.1
What causes fatigue in NMO?
It is difficult to determine a specific reason for fatigue, which is commonly found in people with chronic or neurological illnesses. Possible causes include:1,2
- An attack or relapse. Attacks vary from person to person. Some people with NMO report increased fatigue with attacks.
- Adjusting to your “new normal.” Living with NMO can be physically demanding. If you have problems with movement, muscle spasms, or pain related to NMO, these can cause fatigue.
- Sleep problems. Some sleep problems can occur with NMO. Some of these problems can be related to being in pain or uncomfortable in bed. You may have problems with bowel or bladder control, which can keep you up at night. Over time, sleep deprivation can lead to exhaustion.
- Emotions and mental health problems. Stress, pain, depression, and anxiety often occur in those with NMO. Mental health concerns may result from direct damage to central nervous system structures (nerves in the eyes, spine, or brain) and the unpredictable and progressive nature of the disease. Mental health problems are also common in the general population. There are not enough studies to confirm that mental health problems are directly linked to NMO. More studies will help to learn more about this connection.
- Medicines. Some drugs that treat NMO may cause or add to your fatigue.
Can I do anything to manage the fatigue?
Managing your fatigue may seem like an impossible task. Pain, stiffness, and fatigue may seem like an unending cycle. There are methods you can use to try to help manage the fatigue from NMO.1
Make the most of your energy
NMO symptoms such as pain, weakness, and spasticity can make it challenging to carry out daily tasks. The extra energy you spend may leave you exhausted. Learning to conserve your energy might help you better manage your daily routine. You can take many different steps to become smarter about how you use your energy and more efficient in carrying out tasks:1
- Ask for help – Pick and choose what you want to do. You do not have to do everything. Ask for help with some chores or hire someone to take care of certain duties. You can save a lot of time and energy this way.
- Talk to your doctor – Your doctor can help you figure out what may be causing your fatigue. If you have depression, you may benefit from seeing a therapist. Talk to your doctor about what treatment is best for you.
- Get organized – Try to streamline as many household tasks as you can, from cooking to making your bed. Setting out all of your ingredients and pots and pans before cooking can save time and energy. Planning out your daily tasks can help you find the most efficient way to get things done.
- Use technology to your advantage – At-home technology devices may be useful to help in managing your energy. Some of these may include activity monitors, food logs, or various apps for your phone.
- Get accommodations when needed – If you work, you may need some accommodations to keep you productive and happy. There are laws in place to make sure you can continue to work and find fulfillment in your job. Some ideas on accommodations to help with fatigue related to NMO include things like getting a parking place close to your workplace or shifting to a flex-time schedule so you can work during your peak energy level.
Options for controlling drug side effects
Fatigue can be a side effect of many different medicines. Some drugs used to treat NMO have been shown to cause fatigue. Talk to your doctor about which medicines might be impacting your energy. Your doctor may have options to better manage the side effects of the drugs.1
Methods for improving your sleep
There are many reasons why you may not be getting enough sleep, from stress to depression to pain. You can work with your doctor to find the cause of sleep problems. There are a variety of solutions for sleep problems, depending on the specific problem. Sleep hygiene is an important part of getting a good night’s rest. Some ways to improve your sleep may include:1,3
- Avoid alcohol, nicotine, and caffeine. These can make sleep and rest more difficult.
- Try to keep the same bedtime every night and follow a similar routine
- Get some exercise during the day, when possible
- Make your bedroom cool, dark, and comfortable
- Turn off your digital devices before bed
Get and stay active when you can
Deconditioning or loss of muscle and stamina from lack of exercise can be at the root of fatigue. Exercise also increases endorphins, which are brain chemicals that produce a sense of well-being. Ask your doctor for advice. They may be able to suggest a physical therapist, occupational therapist, or personal trainer who can help you get active and rebuild muscle and strength.4
