Have you noticed your grip becoming weaker with time while living with amyloidosis? Perhaps your hands go completely numb at times, causing you to drop items frequently. Amyloidosis is a disorder that causes abnormal proteins called amyloids to clump together and build up in organs like your heart and liver, but it can also affect the hands. Some types of amyloidosis can cause life-threatening organ damage without treatment.

MyAmyloidosisTeam members have shared how their hand symptoms disrupt everyday life. “I have serious concerns with hand cramps and sensitive nerves on my hands, which disturb my sleep,” said one. “I’ve been really suffering lately with hand pain. Like you, it wakes me up and has brought me to tears,” added another.

In this article, we’ll explore four common amyloidosis hand symptoms to watch out for and learn about the forms of amyloidosis that can cause them.

Main Causes of Amyloidosis Hand Symptoms

Two possible amyloidosis complications are responsible for most symptoms involving the hands: neuropathy and carpal tunnel syndrome.

Neuropathy

Neuropathy, or peripheral neuropathy, is nerve damage. It happens in the peripheral nervous system, which includes all nerves outside of your brain and spinal cord. When it affects sensory nerves, or nerves that help you feel pain and touch, it can cause touch sensitivity or sensations like tingling or burning.

When neuropathy affects motor nerves, or nerves that control muscles, it can cause weakness.

Carpal Tunnel Syndrome

Carpal tunnel syndrome develops because of pressure or irritation on the median nerve. This nerve helps you move your forearm and hand and feel sensations there. At the wrist, the median nerve runs through a passageway between bones called the carpal tunnel.

The symptoms of carpal tunnel syndrome include pain, numbness, pins-and-needles sensations, and difficulty typing or using your hands. These symptoms tend to get worse over time.

4 Symptoms of Amyloidosis in the Hands

The following are four ways amyloidosis might affect your hands. You might also notice some of these same symptoms in your feet.

1. A Weak Grip

Your grip may be weaker now than in the past because of your amyloidosis. Amyloidosis can cause weakness in the hands, which might lead to trouble opening jars or frequently dropping items.

Losing grip strength with amyloidosis frequently happens because of carpal tunnel syndrome. Carpal tunnel syndrome is most common in people with transthyretin amyloidosis (ATTR) or cardiac amyloidosis, but it can affect people with other amyloidosis types too.

ATTR amyloidosis causes carpal tunnel syndrome when amyloid deposits build up around the median nerve and compress it. This often happens in both wrists, causing grip weakness in both hands.

2. Hand Numbness or Tingling

Hand numbness and tingling are classic symptoms of amyloidosis neuropathy, or nerve damage from amyloidosis. Neuropathy from amyloid protein buildup usually starts in the hands and feet where you have small nerve fibers with little protection.

For some people, nerve symptoms like numbness and tingling stand out as the most troublesome feature of amyloidosis.

“The tingling in my fingers and feet is ongoing and definitely part of my neuropathy. I’ve had it for a long time, and nothing seems to really help for long,” shared a MyAmyloidosisTeam member. “It is so aggravating. Sometimes I have to shake my hands to try to get rid of it. Out of all the neuropathic symptoms I suffer, this is one of the worst.”

Numbness and tingling in the hands can also be a symptom of carpal tunnel syndrome when the median nerve, which branches into your hand and fingers, gets compressed. The numbness may be most noticeable in your fingertips.

3. Pain in the Hands, Fingers, and Wrists

Hand pain is a common symptom of amyloidosis, often because of carpal tunnel syndrome associated with ATTR amyloidosis or other types. It can also come from amyloid neuropathy. In the early stages, you might only feel hand pain when you wake up or perform specific tasks using your hands. But as time goes on, your hand pain might eventually become constant.

Some people develop a type of amyloidosis called AA amyloidosis because they have some other condition that causes long-term inflammation, like rheumatoid arthritis. AA amyloidosis can then complicate their arthritis and worsen their joint pain.

One MyAmyloidosisTeam member asked, “Does anyone have arthritic joints that have gotten worse since amyloidosis? Specifically, thumbs?” Another responded with a similar experience, saying, “Yes, my thumb on my right hand and carpal tunnel in my left hand. I have cardiac amyloidosis.”

In rare cases, amyloidosis can affect joints to cause a complication called amyloid arthropathy. Like arthritis, amyloid arthropathy causes joint pain. It might cause pain in your wrists.

4. Fingernail Changes

Not all hand symptoms of amyloidosis involve discomfort or muscle weakness. Amyloidosis can also change the appearance or texture of your fingernails.

Nail changes are a somewhat rare sign of systemic amyloidosis, when amyloids build up in multiple areas of your body instead of just in one area. People with amyloid light-chain amyloidosis (AL amyloidosis), the most common type, are the most likely to have nail and skin changes.

Amyloidosis can cause several changes to the fingernails including:

• Brittleness
• Fragility
• Split nails
• Roughness
• Grooves or ridges along the length of the nails
• Blood under the nails or easy bruising of the nails

Nail changes might be the first or most obvious sign that you have amyloidosis. A doctor might examine your fingernails when diagnosing you.

Talk to Your Doctor About Amyloidosis Hand Symptoms

If you experience hand symptoms like numbness, pain, or weakness, talk to your healthcare provider. These symptoms can come from causes other than amyloidosis and its complications, so it’s important to find their true cause so you can get effective treatment. Nail changes may be unrelated to amyloidosis as well. Changes in how your nails look or feel may be harmless or a sign of an infection, nutrient deficiency, or other condition.

Your doctor may recommend treatment options for specific amyloidosis hand symptoms or for amyloidosis as a whole. They might perform a neurologic exam or nerve conduction study to evaluate symptoms like pain or weakness before recommending amyloidosis treatment.

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.

Have you had hand weakness, pain, or numbness with amyloidosis? How have you managed your hand symptoms? Share your experience in the comments below, or start a conversation by posting on your Activities page.