Balancing daily life with multisystem ATTR-CM symptoms
Fact-checked by Managing multisystem transthyretin amyloid cardiomyopathy (ATTR-CM) involves navigating multiple symptoms, ranging from fatigue and dizziness to digestive issues.
Juggling these symptoms with household and medical responsibilities requires a proactive, structured approach. Conserving energy, monitoring fluid intake, keeping detailed records, and leveraging support systems can make ATTR-CM daily life more manageable.
Managing multisystem symptoms
Managing ATTR-CM symptoms can be complicated because the same abnormal proteins that damage the heart can accumulate and affect various systems throughout your body.
Beyond symptoms of heart failure, such as shortness of breath, fatigue, swelling, and chest pain, ATTR-CM can also be associated with:
- carpal tunnel syndrome, causing numbness, tingling, pain, or weakness in the hands and forearms
- lumbar spinal stenosis, leading to back pain and numbness, or walking difficulties
- urinary problems
- sweating abnormalities
- digestive problems, such as diarrhea, constipation, or nausea
- eye complications
Managing your energy
Low energy often accompanies multisystem ATTR-CM. Still, there are steps you can take to preserve your energy.
1. Apply the Spoon Theory to protect your energy
Consider using the Spoon Theory to quantify your daily energy and avoid a full battery drain. The Spoon Theory was developed by Christine Miserandino, who has lupus. The concept is that those with chronic illness start each day with a limited number of “spoons.” Each spoon represents a unit of energy.
Your goal is to monitor your daily spoons, calculate the energy cost of activities, and rest before running out of spoons.
Here’s how to apply Spoon Theory to cardiac amyloidosis management:
- Select a starting number of spoons that reflects your typical daily energy level.
- Assign a set number of spoons to different tasks based on the required effort. For example, getting dressed might cost one spoon, while a doctor’s visit might cost five or more.
- Deduct spoons for poor sleep or pain.
- Plan your daily to-do list without exceeding your total available spoons.
Pacing for chronic illness in this way can help you visualize your energy, prioritize necessary and enjoyable activities, and recognize when to rest or decline requests.
2. Use spoon-saving hacks
Structuring your day with spoon-saving hacks can help you make time for activities that are meaningful to you and maintain your energy for longer.
For example, if you notice you have the most stamina between 9:00 A.M. and 11:00 A.M., try to schedule your highest-spoon tasks during this window.
Consider scheduling rest periods into the morning and afternoon before fatigue sets in. Lying down in a quiet space for 15-20 minutes may help you recharge before your next activity.
3. Outsource and delegate (the ‘spoon share’)
Let family or friends take over high-spoon household chores and consider using grocery delivery apps, automated prescription refills, or robotic vacuums to keep the household running.
For other tasks, look to neighborhood groups or faith-based organizations, which may offer free help with yard work, meal preparation, or transportation.
4. Manage fluid balance carefully
Fluid intake management is critical when living with ATTR-CM. Too much fluid may worsen swelling, shortness of breath, and other symptoms of heart failure, while too little can contribute to dizziness or low blood pressure.
Working with your cardiologist can help you determine how much fluid and sodium are appropriate for your specific health needs. Try to stay hydrated within doctor-prescribed limits to maintain your energy and avoid dehydration, which can worsen fatigue.
5. Stay active without overdoing it
Exercise can help maintain mobility and reduce stress. However, pushing through fatigue may worsen symptoms with ATTR-CM.
Instead of trying to exercise harder, consider engaging in activities you can tolerate, such as short walks, gentle stretching, or physical therapy if your care team recommends it.
Pace yourself throughout the day, prioritize mobility safety, schedule rest breaks, and adjust your activity levels when symptoms flare.
6. Make nutrition a priority
ATTR-CM can also make it difficult for you to eat enough to maintain your weight. A registered dietitian can help you identify foods that provide enough calories and nutrients for your energy needs, while fitting your doctor’s sodium or fluid recommendations.
If you experience dizziness or low blood pressure after eating, your healthcare team may also recommend eating smaller, more frequent meals and reducing carbohydrates. These changes may help prevent blood pressure from dropping after meals, which can contribute to fatigue or dizziness.
Organizing your healthcare
Managing multisystem ATTR-CM symptoms may work best with a highly coordinated care team of diverse professionals to support you.
Your care team should include a primary care physician, a cardiologist, and a genetic counselor. Depending on your needs, you may also benefit from seeing a dietitian, a physical or occupational therapist, a gastroenterologist, a neurologist, an ophthalmologist, or a mental health professional.
Because each specialist brings a different perspective to ATTR-CM, they deliver optimal care when actively communicating and aligning treatment plans.
How to coordinate whole-team care
ATTR-CM treatment centers and care coordinators can help ensure your providers stay aligned. Specialized amyloidosis treatment centers offer comprehensive, multidisciplinary collaboration. Centers like the Mayo Clinic often offer more face-to-face time with your doctors and sometimes embed nurse specialists to streamline communication between providers.
If you do not live near a dedicated center, ATTR-CM patient resources, such as the Amyloidosis Research Consortium, can connect you with medical professionals, peer and caregiver support, and nearby clinics to help you coordinate your multidisciplinary team.
How to self-advocate
Maintain a binder or digital folder with your latest test results, current medication list, upcoming appointments, and questions for your doctor. Furthermore, keep track of physical and emotional changes. Symptom tracking can help spark a conversation with your team that leads to beneficial treatment adjustments.
Specificity is critical to self-advocacy. Instead of saying “I’m tired,” try to note precise changes. Tell your doctor, “Lately, I’ve needed two afternoon naps instead of one, or become short of breath after climbing one flight of stairs instead of two. Why might that be happening, and what are the next steps to address these issues?”
If you need help remembering details from these appointments, consider bringing a family member, caregiver, or trusted friend to take notes.
ATTR-CM caregiver support and resilience
Friends and loved ones can play a major role in helping you coordinate treatment, advocate for yourself, and make home life easier. Caregiver support works best when loved ones receive guidance on how to support you without overexerting themselves.
Try framing requests around specific tasks that allow your caregiver to plan ahead or make their responsibilities more manageable.
You might say:
- “I want to cook dinner, but can you lift the heavy pots and chop these vegetables?”
- “Can you handle calling the specialty pharmacy to track my medication delivery this week?”
- “I have several appointments this month. Can you help me keep track of the dates and arrange transportation when I need it?”
Additionally, consider setting clear boundaries and maintaining open communication.
You may want to:
- define what you can do versus what you need help with. This stops caregivers from overassisting, which can inadvertently leave them feeling burned out.
- designate specific hours or days when discussing symptoms, doctors, or treatments is strictly off-limits. Use this time to focus on hobbies or simply to connect as a family, not as a patient and caregiver.
- connect with people from external networks, such as the Amyloidosis Foundation. Sharing experiences with other individuals living with rare diseases reduces isolation without exhausting your immediate family.
Working harmoniously with your care team and loved ones makes daily life with ATTR-CM far more manageable, along with structured daily adjustments, such as pacing activities and tracking symptoms. Finding the right balance may help you preserve your energy and maintain your quality of life.
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.
