Living with transthyretin amyloid polyneuropathy (ATTR-PN) poses significant challenges. You might experience symptoms like shooting pain, numbness, tingling, and burning sensations. The condition can also affect your digestion, your balance, and other functions because of damaged nerves.

Treatments for ATTR-PN aim to slow disease progression and manage symptoms. Along with following your treatment plan, there are steps you can take to improve your well-being through self-care and lifestyle changes, offering you a path to better quality of life.

This article explains what ATTR-PN is and offers tips to help you or a loved one live better with ATTR-PN.

What Is Transthyretin Amyloid Polyneuropathy?

ATTR-PN is a rare and progressive disease where the liver produces an unstable protein called transthyretin (TTR). This protein causes a buildup of abnormal protein deposits (amyloid) that harm nerves and various organs. This buildup harms nerve fibers in the peripheral nervous system. ATTR-PN is a type of ATTR amyloidosis.

The term “polyneuropathy” refers to conditions that affect many nerves in the peripheral nervous system. Peripheral nerves are spread throughout the body. “Poly” means many, and “neuropathy” means nerve damage. Polyneuropathy is a type of peripheral neuropathy. It can cause a lot of different symptoms, depending on which nerves are affected.

Symptoms of ATTR-PN can be different from person to person. Many people have sensory symptoms like shooting pain, numbness, tingling, or burning. These are usually felt in the arms and legs. You may also have trouble with motor functions, including balance and walking. Some people also experience specific nerve damage such as carpal tunnel syndrome, which causes pain and numbness in the hands and wrists.

ATTR-PN affects the whole body. Organs such as the eyes, heart, kidneys, and digestive tract can be seriously impacted. Some people experience severe weight loss, irregular heart rate, or heart palpitations.

Exercise may help restore some damaged nerves and reduce symptoms such as nerve pain. Exercise is also good for blood flow and heart function and can help reduce stress.

Below are five tips that can help you lessen the impact of these challenging symptoms on your daily life.

1. Take Care of Your Mental Health

ATTR-PN can affect your mental health. The symptoms can be hard to manage, not only for the person living with ATTR-PN, but also for caregivers. People with ATTR-PN have high rates of psychological distress, including anxiety, depression, and cognitive impairment (problems with thinking and memory).

Getting a diagnosis and treatment can take a long time, and waiting for answers or treatment can add even more stress.

Support groups for people with ATTR-PN, their family members, and caregivers can help reduce feelings of isolation. Living with a rare condition can feel lonely, and amyloidosis support groups — whether in-person or online, such as MyAmloidosisTeam — provide a safe space to share your feelings with people who know what you’re going through. People in support groups often share coping strategies and helpful resources that can help ease some of the stress of living with ATTR-PN or other types of amyloidosis.

Your doctor can also give you a referral for mental health counseling, such as talk therapy or cognitive behavioral therapy. These treatments can help you manage stress and break cycles of negative thoughts. In addition, people with ATTR-PN and their caregivers may benefit from practicing relaxation techniques, such as gentle yoga, mindfulness, or deep breathing exercises. Talk to your healthcare team if you need guidance or resources.

2. Exercise if You’re Able

Exercise can be hard for people living with ATTR-PN. Muscle weakness, weakness from weight loss, fatigue, pain, and dyspnea (shortness of breath) can all make physical activity challenging with ATTR-PN. Because of this, it’s important to choose activities that feel safe and right for you. Still, regular movement can support both your physical and emotional well-being.

Physical activity can be a part of daily activities you enjoy, such as gardening or walking. Take breaks when you need them, and stop if any activity makes your symptoms worse. Never push through pain. Always tell your doctor if your symptoms change.

Low-impact exercise — such as using a recumbent bike, swimming, or doing water aerobics — can help build muscle mass, increase strength, and improve mobility. Some research has shown that exercise may even help restore some damaged nerves and reduce symptoms such as nerve pain. Exercise is also good for blood flow and heart function, and it can help reduce stress.

ATTR-PN can be painful. It’s important to talk to your healthcare provider about the best ways to manage your pain so that you can have a better quality of life.

Physical therapy can help you find an exercise routine that is safe and right for you. Your doctor can refer you to a physical therapist who can teach you exercises based on your needs and abilities. An occupational therapist can help you perform everyday tasks more comfortably.

3. Get the Nutrients You Need

Unintentional weight loss and malnutrition are common in people with ATTR-PN because of the autonomic nerve damage caused by the disease. Gastrointestinal distress caused by ATTR-PN can cause diarrhea, constipation, vomiting, and loss of appetite. It’s important to make sure you’re getting essential nutrients with a well-balanced diet.

Eating smaller meals more often can make digestion easier. If solid foods are hard to eat, healthy smoothies or shakes can give you the nutrients you need. Avoiding alcohol, carbonated drinks, and tobacco may also improve digestion and gut health.

If maintaining a healthy diet is a struggle, your doctor can refer you to a registered dietitian, who can help you plan meals that work for you. You can also ask your doctor about nutritional supplements. Always talk with your healthcare provider before trying a dietary supplement to avoid side effects or poor interactions with your medications.

4. Make Adaptations to Your Home

ATTR-PN can cause mobility problems, which can make moving around your home tricky. Making adaptations to your home can help provide a safer and more comfortable environment. Here are some ways to make your home safer:

• Install night-lights or motion sensor lights so rooms stay well lit.
• Remove clutter from surfaces and on floors to create more open space.
• Remove area rugs, which are easy to trip on.
• Install transition strips in areas where the floor is uneven.
• Keep items you use often within easy reach.

An occupational therapist or physical therapist can suggest ways to make your home safer and more comfortable. They can also recommend adaptive equipment that can help with everyday tasks, such as a shower seat, handrails, grab bars, mobility aids like canes or walkers, or raised toilet seats.

5. Talk to Your Doctor About Managing Pain

ATTR-PN can be painful. It’s important to talk to your healthcare provider about the best ways to manage your neuropathic pain so you can have a better quality of life. Your doctor can review your treatment plan with you and discuss new treatment options. They can also recommend treatments, like physical therapy, that can reduce your pain.

Your options for pain control include:

• Prescription medications for neuropathy
• Prescription creams that help reduce pain
• Over-the-counter pain creams
• Physical therapy
• Complementary therapies, such as acupuncture or meditation

Sticking with your ATTR-PN treatment plan is also important for managing symptoms. While the condition isn’t curable, there are many more new treatments today than there were in the past, thanks to ongoing research and clinical trials.

Join the Conversation

On MyAmyloidosisTeam, people share their experiences with amyloidosis, get advice, and find support from others who understand.

How do you improve your daily life while living with ATTR-PN? Let others know in the comments below.