Understanding Ataxia Progression: Dealing with Fatigue

Fatigue and Ataxia3

Fatigue is the shadow of ataxia, but within that shadow, we can discover the strength to shine.

Living with ataxia, a neurological disorder that impairs movement and coordination, comes with special difficulties that go beyond physical symptoms.  Constant fatigue is one of the most common and confusing symptoms that people with ataxia face.  It’s important to remember that fatigue is a normal part of what we all deal with as this progresses.  But why does this happen and what can we do about it?

Why Does Fatigue Occur with Ataxia?

According to NHS, “Many people with neurological conditions such as ataxia report feeling extremely tired and lethargic (lacking in energy). It’s thought this is partly caused by disturbed sleep and the physical efforts of having to cope with the loss of coordination.”

Ataxia can have many different underlying causes, ranging from acquired diseases like multiple sclerosis or stroke to inherited disorders like Friedreich’s ataxia.

Ataxia fatigue is complex:

An Increase in Energy Usage:  It can be very draining to compensate for a lack of coordination.  Simply walking or speaking can require more energy for people with ataxia. 

Muscle Imbalances and Overcompensation:  Muscles that are not typically used during regular activity may be pushed to compensate for erratic movements, which can wear them out and increase the amount of energy they use.

Mental Stress:  It takes a greater amount of energy to focus on movement and coordination, which adds to both physical and mental tiredness.

Other Conditions:  Fatigue may also be increased by other medical conditions like anxiety, depression, or sleep difficulties.

Understanding these underlying causes can help individuals and caregivers better manage and cope with the fatigue associated with ataxia.

Managing Fatigue in Ataxia

Although ataxia-related fatigue is common, there are methods and lifestyle changes that may reduce its effects:

Energy Preservation

  • Pacing:  To save energy, divide work into manageable chunks and take breaks in between.
  • Prioritize Tasks:  Decide which jobs matter most and work on them, delegating or delaying less important ones.
  • Use Assistive Devices:  Mobility aids like canes or walkers can reduce the energy used when walking.

Physical Activity and Exercise

  • Low-Impact Exercise:  Take part in less demanding exercises that are easier on the joints and muscles, such as swimming or stationary cycling.  Just doing something to get moving and increase your heart rate will help.
  • Physical Therapy:  To maintain your strength and flexibility, develop a customized exercise plan with the help of a therapist.
  • Acupuncture:  Several studies show that acupuncture may improve both physical and mental fatigue.  According to Verywell Health.
  • Mindfulness and Meditation:  Frontiers says “Mindfulness also works on fatigue. Previous studies suggested that mindfulness meditation can partially replace rest or sleep and alleviate mental fatigue’s adverse effects.” 

I encourage everyone to do more research and explore what plan works with your situation.  Remember, as this progresses, things will change.  This is a lifelong balance to discover what works for you.

Healthy Sleep Habits

  • Establish a Routine:  Try to maintain a consistent pattern with your wake and sleep times.
  • A Relaxing Environment:  Reduce light and noise in the bedroom to make it sleep-friendly. 

Much of what I read was saying to reduce light and I’m sure that works for many people out there.  But for me, I have always needed some light when I sleep.  Everyone is different and you know what works for you!

Calming Teas and mild sleep aids such as Melatonin are also good options.  Be sure to keep them mild. 

Nutrition and Hydration

  • Balanced Diet:  Consume foods high in nutrients to maintain energy levels throughout the day.
  • Stay Hydrated:  Dehydration can worsen feelings of fatigue.  If you are like me, drinking water or any clear liquids can cause you to sometimes choke.  That is called Dysphagia or difficulty swallowing. 

That doesn’t mean you cannot drink water or clear liquids.  I personally use water bottles with a small opening or a straw to reduce the amounts.  Whatever works for you, just try and stay hydrated. 

Psychological Support

  • Manage Stress:  Practice relaxation techniques such as meditation or deep breathing to lessen stress.  Physical activity can also help you to release some of the tension you experience throughout the day.
  • Seek Counseling:  Addressing mental health concerns like depression or anxiety can improve overall well-being. 

Neurofeedback and Acupuncture:  Do you notice that many of these work for multiple categories?  I have written in the past about the potential benefits of neurofeedback and acupuncture.  Read about acupuncture.

I can personally tell you that neurofeedback and acupuncture have helped to give me a “calmer” mind.

Assistive Technology

  • Adaptive Tools:  Utilize devices such as voice-to-text software or ergonomic keyboards to reduce physical strain.

Social Support

  • Join Support Groups:  Connect with others facing similar challenges for emotional support and practical advice.
  • Communicate:  Educate family, friends, and colleagues about ataxia to raise understanding and empathy.

When to Seek Professional Help

Persistent or worsening fatigue should always be discussed with healthcare providers.   They can evaluate you for treatable causes like anemia, thyroid dysfunction, or medication side effects.  Additionally, they can provide tailored recommendations and referrals to specialists as needed.

Final Thoughts

Fatigue is a common and normal part of ataxia progression, but it doesn’t have to dictate quality of life.  By implementing some of these strategies and seeking appropriate support, those of us with Ataxia can better manage our energy levels.  And navigate daily challenges better.  Remember, each person’s experience with this movement disorder is unique.  It is essential to experiment with different approaches to find what is best for you. 

If you would like more details on what I do, please feel free to Contact Me or leave a comment below with what you are doing that works.

If you would like to get involved and share your experience with Ataxia, join Our Community today.  A place where we empower you to build a healthy lifestyle and raise overdue Ataxia Awareness.  Experience transformative storytelling and share your story to inspire positive change.

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