Do you ever feel unsteady or dizzy, as if your balance isn’t what it used to be? If you have amyloidosis, this might be something you’ve noticed. Amyloidosis is a rare disease where abnormal proteins build up in the body’s tissues and organs. Amyloidosis can affect your balance in ways you might not realize, and sometimes, other health problems can also play a role. Balance problems can be serious and may significantly affect your quality of life.

In this article, we’ll explain how amyloidosis can affect your balance and provide six practical tips to help you feel more stable and reduce your risk of falling.

How Can Amyloidosis Affect Balance?

Amyloidosis is a condition in which abnormal proteins, called amyloids, build up in your organs and tissues. This can disrupt normal function and lead to various symptoms, including issues with balance.

Here are some ways amyloidosis can cause balance problems:

Nerve Damage

One of the main ways amyloidosis affects balance is through the buildup of proteins in your nerves. This can damage them and interfere with the signals between your brain and body. When these signals are disrupted, it affects the muscles and coordination needed to stay steady. The severity of neuropathy can vary significantly among individuals. The nerve damage can affect sensory nerves, motor nerves, and autonomic nerves, all of which play a role in maintaining balance.

Different types of amyloidosis can cause nerve damage. These include hereditary transthyretin amyloidosis (hATTR), AL amyloidosis (amyloid light chain or primary amyloidosis), and AA amyloidosis (secondary amyloidosis). Nerve damage can lead to symptoms like tingling, numbness, weakness, and difficulty with balance.

Hypotension and Dizziness

Hypotension, or low blood pressure, is common in people with amyloidosis, especially those with hATTR. When your blood pressure drops too low, it can cause dizziness or lightheadedness, especially when standing up quickly. This condition is called orthostatic hypotension. When you stand, gravity pulls blood toward your legs. In healthy people, the body quickly adjusts to maintain blood flow to the brain.

In amyloidosis, this adjustment may not work as well. Low blood pressure can make it harder to stay steady and increases the risk of falling. Falls caused by orthostatic hypotension can result in severe injury. Dehydration can also worsen hypotension.

Fatigue

Amyloidosis often causes fatigue, or extreme tiredness that doesn’t improve with rest. When you feel constantly tired, your muscles may not work as efficiently, making it harder to walk, stand, or perform daily activities. This lack of energy can increase the chance of stumbling or losing your balance.

“I’ve learned some coping skills, but my fear of falling is always there.”

— A MyAmyloidosisTeam member

One MyAmyloidosisTeam member shared, “My husband experiences loss of consciousness at times, and other times he’s just so tired that he falls down.”

Other Health Conditions

Besides amyloidosis, other health issues may contribute to balance problems. For example, the nerves in your inner ear help regulate balance. If amyloidosis affects these nerves, your balance could be compromised. A thorough medical evaluation can help rule out other causes of balance problems.

One MyAmyloidosisTeam member shared, “My husband was diagnosed a year ago but had symptoms of ATTR for over 12 years. He has severe balance issues. Doctors initially thought it was vestibular neuritis, but it’s worsened, with more frequent bouts of imbalance and falls. Has anyone else experienced inner ear nerve damage attributed to amyloidosis?”

Sometimes amyloidosis appears alongside other conditions that can affect your balance, like diabetes. While these conditions may not be directly related to amyloidosis, they can still make it harder to stay steady.

How Balance Issues Can Impact Daily Life

Balance problems can make everyday tasks difficult. MyAmyloidosisTeam members share how their balance issues affect their daily activities and mental well-being.

“I walk around like a little mouse, close to the walls so I don’t fall,” one member wrote. “I miss the energy I used to have. I used to do my chores quickly. Now, I still do them, but I have to rely on willpower instead of energy.”

“I struggle with constantly bumping into doorways and such. Have the bruises to show it!” another member commented.

“I’ve learned some coping skills,” a member shared, “but my fear of falling is always there.”

While balance issues can be challenging, there are ways to help improve your stability and feel safer.

6 Tips To Improve Stability and Balance

Here are six tips that can help you stay balanced and reduce your chances of falling. These tips should complement medical advice, and any balance issues should be discussed with your doctor.

1. Get Help for Nerve Damage

If amyloid neuropathy is affecting your balance, talk to your doctor about possible treatments. These treatments can help reduce balance problems and improve coordination. Your doctor can guide you in finding the best options for your situation.

2. Manage Low Blood Pressure

If you feel dizzy, it might be due to low blood pressure. There are simple things you can do to help. Drink plenty of fluids to stay hydrated. Try to avoid standing up too quickly. Eating smaller, more frequent meals can also help. Compression stockings may improve circulation. Talk to your doctor to find the best ways to manage your blood pressure and stay safe.

One member recommends standing up slowly and pausing before walking: “If you give yourself a minute after standing and before moving, you’re safer,” they said.

3. Use Supportive Devices

If you feel unsteady due to amyloidosis, using supportive devices like canes, walkers, or braces can help improve your balance. These devices can reduce the risk of falling. Your doctor or therapist can help you choose the right device and show you how to use it safely.

“I have a cane next to my bed to use when I get up. This is precautionary, as my balance is not always functioning normally.”

— A MyAmyloidosisTeam member

“Get a walker,” one MyAmyloidosisTeam member recommended. “It helps a lot with balance.”

4. Consider Physical Therapy

If amyloidosis is affecting your balance, physical therapy can help. A physical therapist can teach you exercises to strengthen your muscles and improve coordination. Some examples include standing on one leg, walking heel to toe, and doing gentle yoga poses. Practicing these regularly can make daily activities safer and easier.

Several members have had success with a vestibular physical therapist, who specializes in balance issues. “Physical therapy from a vestibular physical therapist has really helped my balance improve,” one member said.

5. Make Your Home Safer

Making simple changes around your house can help prevent tripping and falling. Keep your home clutter-free, especially in high-traffic areas. Secure loose rugs or carpets with nonslip mats. Install grab bars in the bathroom and along stairways for extra support. Brighten up dim areas with additional lighting to help you see better while moving around.

“I have a cane next to my bed to use when I get up. This is precautionary, as my balance is not always functioning normally,” a member wrote.

6. Join a Support Group

Sometimes, sharing your experiences with others who understand can be the best way to find new information to help you. Hearing how others cope and what works for them can provide valuable insights and motivation.

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 amyloidosis? Have you noticed any changes in your balance or stability? Share your experiences in the comments below, or start a conversation by posting on your Activities page.