Transthyretin amyloid cardiomyopathy (ATTR-CM), a type of amyloidosis that affects the heart, can impact your life in unexpected ways. Since it involves a buildup of a protein called transthyretin in your heart muscle, you might be surprised to learn it can affect your hands and wrists, too.

In fact, ATTR-CM is related to carpal tunnel syndrome. Here’s what you need to know about ATTR-CM and painful wrists.

What Is ATTR-CM?

If you’ve been diagnosed with ATTR-CM, it means that a protein called transthyretin has become misshapen and is building up in your heart rather than circulating normally in your blood. The buildup of this protein is called an amyloid deposit. These deposits make the walls of your heart stiff, which can make it harder for it to pump all of the blood your body needs. Over time, this can lead to heart failure.

There are two types of ATTR-CM. One is a type of hereditary amyloidosis (hATTR amyloidosis or familial amyloidosis). If you have the hereditary type of ATTR-CM, you have changes in the genes that produce transthyretin. These genetic mutations lead to amyloid buildup in various areas of your body, including your heart. If you know you have a family history of ATTR-CM, you can ask your doctor about genetic testing for this condition.

ATTR-CM can also occur without changes to your genes. This is called wild-type ATTR-CM. Both types share symptoms like carpal tunnel syndrome.

What Is Carpal Tunnel Syndrome?

The carpal tunnel is a small passage on the palm side of your hand. The median nerve runs through it, surrounded by bones and ligaments. When something happens in that tunnel that puts pressure on the median nerve, the condition that results is carpal tunnel syndrome.

Most people living with carpal tunnel syndrome find their symptoms develop slowly. They may notice tingling and numbness. This is most common in the thumb and all of the fingers except the pinky finger, though the sensations can also travel up your arm. Some people feel something like an electric shock in the same areas. This can be very painful.

Carpal tunnel syndrome may also cause weakness in the hand and the fingers. You may drop objects when you try to use your thumb and fingers to hold them, for instance. This can be related to numbness but may occur separately, too.

How Is ATTR-CM Related to Carpal Tunnel?

The “CM” in an ATTR-CM diagnosis stands for cardiomyopathy, which means this kind of amyloidosis affects the heart. However, the same amyloid deposits that collect in the heart with ATTR-CM can build up in other places in your body, including within your nervous system. Your median nerve is part of that system. One common symptom of amyloid buildup in your nervous system is carpal tunnel syndrome. Thus, carpal tunnel problems could have the same cause as ATTR-CM.

Several members of MyAmyloidosisTeam have talked about having carpal tunnel syndrome as part of their amyloidosis experience. One member shared, “I have been bothered with carpal tunnel for over 10 years. It has become a painful way of life for me.”

“I’ve experienced some form of carpal tunnel since I was 20,” another added.

Some even found out about having ATTR-CM because of carpal tunnel syndrome. “Diagnosed ATTR from carpal tunnel muscle biopsy,” one member explained. Another said, “My carpal tunnel biopsy came back positive for amyloidosis.”

“My carpal tunnel biopsy came back positive for amyloidosis.”

— A MyAmyloidosisTeam member

Carpal Tunnel and Diagnosing ATTR-CM

Carpal tunnel syndrome may actually be useful in screening people for ATTR-CM. In one study, it appeared before heart problems regularly enough that researchers suggested it be part of deciding who should be tested for ATTR-CM. In fact, that research showed that about half of people who later go on to have heart problems related to amyloidosis have been previously diagnosed with carpal tunnel syndrome. The risk of an amyloidosis diagnosis is up to three times higher in those who have carpal tunnel syndrome.

The risk of an amyloidosis diagnosis is up to three times higher in those who have carpal tunnel syndrome.

Having carpal tunnel symptoms in both hands is associated with amyloidosis. In one study, people with carpal tunnel problems in both hands were more likely to have amyloidosis. Those who only had it on one side usually found that it was caused by other things, like a broken wrist or an inflammatory condition.

Additionally, most people who have carpal tunnel syndrome and go on to develop ATTR-CM have other signs of amyloidosis at the same time. They usually have one or more of the following issues:

• Sudden blood pressure drops
• Inability to exercise
• Burning foot pain
• Diarrhea
• Constipation
• Erectile dysfunction

If you have been diagnosed with carpal tunnel and it’s on both sides, or if you have any of the other issues noted above, talk to your doctor about additional tests. Treatments can slow ATTR-CM progression, but it’s important to be diagnosed early so they have a better chance of working. Paying attention to carpal tunnel symptoms may be the key to an early diagnosis.

How To Treat Carpal Tunnel Symptoms

There are many ways you can treat carpal tunnel syndrome. The treatment option you and your healthcare provider choose may depend on how severe the condition is for you, what you need to do with your hands every day, and any other medical conditions you might have.

If you’re just starting to notice symptoms of carpal tunnel problems, there are a few things you can try. As much as you can, avoid the actions that cause your symptoms. This may not be possible if you use your hands for work, though. You can also use ice on the carpal tunnel area to reduce swelling and take breaks to rest your hands.

Talk to your doctor as soon as you start to notice symptoms. Treating them early may help you avoid surgery. Your doctor can prescribe medications that help treat any swelling in your carpal tunnel. They can also give you splints that hold your wrists in the right place so the median nerve doesn’t experience pressure.

Carpal tunnel surgery can help you feel better, too. This procedure relieves the pressure on your median nerve so it can function normally again. If your body continues building up amyloid proteins in the small tunnel, this may be what you need to feel better again.

Some members of MyAmyloidosisTeam have had carpal tunnel release surgery and found relief from their carpal tunnel symptoms. One shared, “Yes, carpal tunnel is a symptom, and I had surgery many years ago for both wrists with wonderful results.” Another member said, “I decided to have carpal tunnel surgery on that wrist. I must say, it took months of recovery, but I’m happy to report that my wrist is so much better.”

Talk With Others Who Understand

MyAmyloidosisTeam is the social network for people with amyloidosis and their loved ones. On MyAmyloidosisTeam, members come together to ask questions, give advice, and share their stories with others who understand life with amyloidosis.

Are you living with carpal tunnel related to ATTR-CM? How has it affected your daily life? Share your experience in the comments below, or start a conversation by posting on your Activities page.