If you have a type of amyloidosis called transthyretin amyloid cardiomyopathy (ATTR-CM), edema (swelling) is one of the most common symptoms. Edema happens when fluid gets trapped in body tissues, causing them to swell and look puffy.

Edema can be uncomfortable, affect movement, and make areas like your legs and feet sore or painful. Lifestyle changes and certain treatments may help reduce swelling and make it easier to manage.

Why Does ATTR-CM Cause Edema?

ATTR-CM can lead to heart failure, which often causes swelling. In ATTR-CM, a protein called transthyretin becomes misshapen and builds up in the heart muscle.

These misshapen proteins stick together and form amyloid deposits in the heart. This buildup damages heart tissue and makes it harder for the heart to pump blood. Over time, this can lead to heart failure.

When the heart can’t pump blood as well as it should, blood and other fluids can collect in parts of the body. This usually affects the legs and feet (when the right side of the heart is involved), because they’re farthest from the heart. It can also affect the lungs (when the left side of the heart is involved).

This extra fluid leads to edema and the swollen calves, ankles, and feet often seen with ATTR-CM.

People with ATTR-CM may experience swelling along with other symptoms, such as shortness of breath or carpal tunnel syndrome. One MyAmyloidosisTeam member shared, “I have shortness of breath, extreme fatigue, swelling in my feet and legs, and an upset stomach.”

How Is Edema Treated?

If you have edema with ATTR-CM, it’s important to make sure your ATTR-CM is being treated. Some medications are approved for ATTR-CM. If you’re not currently receiving treatment, talk with a cardiologist about the best option for you.

Along with ATTR-CM medications, other drugs and lifestyle approaches may help manage edema.

Diuretics

Diuretics are a common treatment for heart failure. These medications flush excess fluid out of your body through the kidneys, so you pass more urine. This can make it easier for your heart to pump blood and help reduce swelling.

“The only annoying issue I have is feet/ankle swelling. I take a diuretic for it,” one MyAmyloidosisTeam member said.

Lifestyle Changes

You can take several steps to help manage edema and reduce swelling in your legs, ankles, and feet.

Diet and exercise can help reduce swelling. You may want to try:

• Getting more physical activity — Exercise helps keep fluid moving and may reduce swelling. Low-impact activities such as swimming and walking are good options.
• Consuming less salt — Too much salt in your diet can cause fluid retention and contribute to edema. The American Heart Association suggests an optimal limit of 1,500 milligrams a day for most adults, but check with your doctor for the right amount for you.

Other lifestyle changes that may help include:

• Wearing compression socks — These nonmedical support garments can help keep fluid from pooling in the legs. Compression socks may be helpful for people with stable, nonsevere heart failure.
• Elevating your legs — Raising your legs above heart level can help fluid move back toward the heart. Try propping your legs up with pillows or a bolster when lying down.
• Trying massage — Gentle foot and leg massage may help reduce swelling. One study of 60 people with heart failure found that 10 minutes of daily foot massage improved swelling and sleep.
• Avoiding nonsteroidal anti-inflammatory drugs (NSAIDs) — People with heart failure are often advised to avoid NSAIDs, such as ibuprofen and naproxen, which can worsen heart failure and swelling. If you need these medications, talk with your doctor about the risks and benefits.
• Following a skin care routine — Edema can make your skin dry and cracked, which can raise the risk of infection, especially if you get a scrape or cut. Keep affected areas clean and moisturized to help protect your skin.

Talk with your healthcare provider about any swelling you notice, so you can find the safest and most effective ways to manage edema with ATTR-CM.

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

Have you developed edema related to your ATTR-CM? Let others know in the comments below.