Strategies for managing hATTR-PN fatigue
Fact-checked by Hereditary transthyretin amyloidosis with polyneuropathy (hATTR-PN) is a rare, inherited condition that affects the nerves and other parts of the body, such as the heart, eyes, or kidneys.
In hATTR-PN, a protein called transthyretin misfolds and forms abnormal clumps called amyloid deposits, which affect the body in various ways. Symptoms can vary widely from person to person and may change over time as the disease progresses.
One common symptom is fatigue. Fortunately, there are ways to get a handle on it. Here’s what you should know about managing hATTR-PN fatigue.
What hATTR-PN fatigue feels like
Fatigue from hATTR-PN isn’t just the normal tiredness you get after a long day. It’s a deep exhaustion and lethargy that some people with hATTR-PN say takes over their whole body.
It can make social events and even daily routine activities very hard to sustain — and can change the way you make plans.
If this is what you’re experiencing, you’re not alone. This kind of hATTR-PN fatigue is common and often accompanies cognitive or neurologic symptoms like brain fog, numbness, or tingling.
Energy management
Living with a rare disease means having to contend with up and down energy levels. There are several techniques you can use for chronic fatigue management, including:
- Pacing: Breaking tasks into smaller steps and spacing them out can help you reduce the energy crashes that can come from overexertion. Fatigue pacing techniques may also involve choosing times when your energy is highest to focus on more demanding tasks or on activities that matter most.
- Delegating: Delegating chores or tasks to family or friends when possible can conserve energy.
- Simplifying: Use grippers, home organizers, mobility aids, and anything else that helps make things easier. You can work with an occupational therapist to develop strategies to better conserve your energy.
Staying active with hATTR-PN
Feeling fatigued doesn’t mean you should stop moving altogether. Engaging in light movement may help keep you mobile and even potentially regenerate damaged nerves.
People with hATTR-PN may experience heart palpitations or arrhythmias, so it’s important that you work with a physical therapist who understands your condition and can tailor workouts to your needs.
Sleep and recovery
Good sleep is important for managing fatigue with neuropathy. Here are a few ways to get better sleep:
- Aim for a consistent sleep schedule: Go to bed and wake up at roughly the same times each day. This helps regulate your internal clock and increases restorative sleep.
- Create a restful sleep environment: Your bedroom should be cool, dark, and screen-free. This can make it easier to fall asleep and stay asleep.
- Nap: If you need a rest, that’s OK. A short nap may refresh you without interfering with your nighttime sleep regimen.
- Use relaxation techniques: Techniques like deep breathing, mindfulness, or gentle stretching can help you wind down before bed.
Nutrition and hydration
Nutrition can also play an important supporting role in managing hATTR-PN.
Aim for a balanced, nutrient-dense diet that includes adequate protein from lean meats or plant-based sources to help maintain health and support energy. Be sure to ask your doctor how much protein you need.
A doctor may also recommend increasing fiber to manage constipation. However, staying well hydrated is key if you are adding foods that are rich in fiber, since fiber without enough fluids can make constipation worse.
Managing the emotional load
Living with a progressive condition like hATTR-PN — and the fatigue it can cause — can be emotionally challenging. It’s normal to feel frustration, stress, or depression alongside physical exhaustion.
Practicing mindfulness, leaning on social support, and talking with mental health professionals can help you cope with the emotional challenges that accompany your chronic illness.
You’re not alone in this, and taking your emotional well-being as seriously as your physical symptoms is an important part of overall energy management.
Amyloidosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
