Managing peripheral neuropathy

We have outlined some key information about peripheral neuropathy on this page. If you would like to read more, see our infosheet below.

What is peripheral neuropathy?

Peripheral neuropathy is a condition where nerves in your peripheral nervous system have been damaged.

This nerve damage most often affects your hands and feet, and can cause feelings such as, numbness, pain, burning, and pins and needles.  

Peripheral neuropathy can also affect other parts of your body and cause other symptoms.

What are nerves?

Nerves are your body’s communication system. They carry information about your body’s functions, sensations and movements. This information travels as electrical signals that pass from one nerve cell (called a neuron) to the next nerve cell. These electrical impulses follow a pathway along your nerves.  

When nerves are damaged, the messages they carry can get mixed up, or may not get through properly. This can lead to a wide range of symptoms throughout the body. 

Your peripheral nervous system

The peripheral nervous system (PNS) is the network of nerves that branch out from your brain and spinal cord to the rest of your body. This includes your arms, hands, fingers, legs, feet, toes, chest, face, and head.  

The nerves of your peripheral nervous system (PNS) carry electrical signals to and from your brain and/or spinal cord.  

Signs and symptoms of peripheral neuropathy

There are three main types of nerves in your PNS. Each type has a different role in your body. When different nerves are damaged, they cause different signs and symptoms.  

Sensory nerves help you to use your senses: touch, sight, hearing, smell and taste.

Peripheral neuropathy that affects your sensory nerves is called sensory peripheral neuropathy.

You may experience:

• numbness: not being able to feel pain, temperature or touch
• burning, ice-cold or shooting pain
• tingling: pins and needles or being very sensitive to touch
• problems with balance and/or coordination
• loss of reflexes
• difficulty hearing or ringing in your ears
• trouble with fine motor tasks, like handwriting, or doing up buttons and zips.

Motor nerves help you to move by sending messages from your brain to your muscles.

Peripheral neuropathy that affects your motor nerves is called motor peripheral neuropathy.

You may experience:

• muscle cramps
• muscle twitches
• muscle shrinkage
• muscle weakness
• trouble with fine motor tasks, like handwriting, or doing up buttons and zips
• difficulty walking
• difficulty getting up from a chair or walking up and down stairs.

Autonomic nerves help control your automatic body functions — like heartbeat, blood pressure, bowel and bladder function, digestion, body temperature, and sexual function.

Peripheral neuropathy that affects your autonomic nerves is called autonomic peripheral neuropathy.

You may experience:

• dizziness or fainting
• diarrhoea
• constipation
• changes in urinating (weeing)
• feeling bloated or full quickly when eating
• abnormal sweating
• dry eyes or changes to your sight
• ringing in your ears or difficulty hearing
• difficulty getting or maintaining an erection
• vaginal dryness
• low libido (sex drive)
• difficulty reaching orgasm.

What causes peripheral neuropathy in myeloma?

Peripheral neuropathy in myeloma can be caused by the disease itself or can be a side effect of some myeloma treatments. 

Myeloma related causes:

Cause	Reason
Paraprotein	High levels of paraprotein may cause direct damage to your nerve cells.
Myeloma bone disease	Fractures of your long bones caused by myeloma bone disease or bony tumours can put pressure on your nerves.
Active myeloma	When your myeloma is active, weight loss, infection and other changes in your body can contribute to peripheral neuropathy.
AL amyloidosis  (A condition that sometimes happens alongside myeloma)	Protein deposits cause compression or direct damage to nerves.

Treatment related causes:

Some myeloma treatments may cause peripheral neuropathy as a side effect. These include: 

• thalidomide (Thalomid®)
• lenalidomide (Revlimid®)
• pomalidomide (Pomalyst®)
• bortezomib (Valcade®)
• carfilzomib (Kyprolis®)
• ixazomib (Ninlaro®).

Steroids do not directly cause peripheral neuropathy. However, uncontrolled high blood sugar levels caused by steroid treatment can lead to peripheral neuropathy or make it worse. 

Can peripheral neuropathy be prevented or reversed?

Even though peripheral neuropathy isn’t usually preventable, reporting symptoms
to your treating team as early as possible can help reduce how severe it becomes.

There is currently no treatment that can completely reverse peripheral neuropathy.

If your peripheral neuropathy was caused by the myeloma itself, treating the myeloma may improve your symptoms.

If your peripheral neuropathy is caused by myeloma treatments, your symptoms may improve after you finish treatment. This happens as your nerves slowly start to repair, usually within 12 months.

If your symptoms last longer than this, there are management strategies that can help you live more comfortably.

What can help the symptoms of peripheral neuropathy?

There are many strategies, aids and health professionals that can help you to manage your symptoms and live more comfortably.

Read our Managing peripheral neuropathy in myeloma infosheet for more information on:

• pain relief medicines
• topical pain relief
• supplements
• complementary therapies
• exercise and stretching
• food and drinks
• managing digestive and bladder issues
• helpful equipment and aids

Keeping yourself safe

Because peripheral neuropathy can reduce sensation, affect balance and cause muscle weakness and dizziness, it is important to take extra steps to help keep yourself safe and prevent injuries.

Read our Managing peripheral neuropathy in myeloma infosheet for practical strategies and health professionals who can help with:

• preventing falls
• drop in blood pressure and fainting when changing positions
• skin injuries to your hands and feet
• keeping safe while driving

Looking after your mental health

Living with symptoms of peripheral neuropathy can have a big impact on your mental and emotional health and overall wellbeing.

Talking with a psychologist can help you to:

• adjust to changes in your life
• learn mindfulness and relaxation techniques that may help with pain and strong emotions such as anxiety, anger, grief, frustration and agitation
• improve communication with family and friends
• build resilience and hope.

Connecting with others going through a similar experience may also help. Myeloma Australia’s Specialist Myeloma Nurses run online and in-person Information and Support Groups across Australia.

Talking about sex and intimacy

Peripheral neuropathy may affect your ability to have sex or to be sexually intimate in the way you are used to.

There are many ways you can adapt sex and intimacy to work around these changes:

• Open communication with your partner can help build trust and closeness and work out solutions together.
• Medicines and lubricants can help with erections, vaginal dryness and pain.
• A vibrator may help with sensation and orgasm.
• Healthcare professionals, including sexologists and occupational therapists who specialise in this area, can provide advice and practical strategies so that sex and intimacy can continue to be an enjoyable part of your life.