Ask the Nurse: Peripheral Neuropathy

This month’s Ask the Nurse blog covers some of the questions we regularly get asked about peripheral neuropathy.

Treating and caring for myeloma patients is complex and very individual.  To ensure patients have the best possible quality of life, healthcare teams need to find ways to treat myeloma and minimize and manage the complications and side effects caused by myeloma and anti-myeloma treatments.

Peripheral neuropathy is one complication that our callers regularly raise on the Infoline. These calls can be centred on patients’ concerns about developing peripheral neuropathy during treatment or from patients who are looking at ways to better manage their peripheral neuropathy. This month, we will cover and provide our answers to these questions.

 What is peripheral neuropathy?

Peripheral neuropathy is the term used to describe damage to the nerves that make up the peripheral nervous system (the nerves outside the brain and spinal cord which includes the nerves in the face, arms, legs, chest, and skull).

Peripheral neuropathy can be caused by both myeloma and anti-myeloma treatments. However, most cases of peripheral neuropathy are related to treatment side effects.

Thalidomide and bortezomib (Velcade®) are two of the most commonly used treatments known to cause nerve damage, particularly when they are given at high doses.

I am currently on treatment and have been asked to report any signs of peripheral neuropathy. What are the symptoms of peripheral neuropathy?

Peripheral nerves have several different functions. When these nerves are damaged, they can result in a range of symptoms. The most common symptoms include tingling, burning, numbness or pins and needles in the hands and feet.

Other signs of peripheral neuropathy include tremors, muscle cramps, loss of coordination or dexterity, dizziness when standing, impotence and incontinence.

If you experience these symptoms or side effects, it is important that you tell your healthcare team. We often advise patients to keep a diary so they can document any changes and report them to their team. This can also help you give an accurate description of your symptoms when you talk to your healthcare team. You can download or order a copy of the Myeloma UK Patient Diary from our website to help you record your symptoms.

I am worried that my healthcare team will stop my treatment if I have peripheral neuropathy. Is this the case?

Some patients may not tell their healthcare team about changes in their health because they don’t see it as something serious, think it will go away by itself or are worried it could affect their treatment. But, as with all side effects and complications, we know that early intervention for peripheral neuropathy is still the best way to prevent further damage to the nerves.

Therefore, you should always tell your healthcare team if you suspect you have peripheral neuropathy.

There are several ways healthcare professionals manage peripheral neuropathy. The first thing your team would do is assess whether you have damage to your nerves and evaluate the severity of the damage.

Based on these assessments, your team may:

  • Continue with your treatment, while keeping a close eye on your symptoms
  • Change the dosing schedule or administration method of your treatment
  • Reduce the dose of your treatment
  • Suspend treatment until symptoms are less severe
  • Discontinue current treatment and start an alternative treatment, if necessary
  • Prescribe a drug to help manage the symptoms

They will only make changes to your treatment or stop it if it is absolutely necessary.

The painkillers I have been given for my peripheral neuropathy are not working, what should I do?

It is important that you find the treatment that works best for you, so speak to your healthcare team if a particular painkiller is not working or is causing side effects.

Your healthcare team may be able to change your dose or give you an alternative drug.

If you are having persistent problems with pain, you can ask to be referred to a pain specialist or to the palliative care team.

Although often associated with end-of-life care, palliative care teams are specialists in the management of symptoms and complications at all stages of illness. They offer a holistic approach and focus on quality of life.

I have long-term peripheral neuropathy. What can I do to better manage my symptoms?

There are many ways you can ease the symptoms of peripheral neuropathy that include the following:

  • Your healthcare team can prescribe drugs to reduce any nerve pain
  • Topical creams can help alleviate pain or burning sensations in the hands or feet (i.e. menthol, capsaicin or lidocaine creams)
  • Some patients find it helpful to use complementary therapies, such as acupuncture, a TENS machine or a gentle massage
  • Occupational health can assist you to adapt your home if you lose some dexterity or physical ability

To learn more about peripheral neuropathy you can watch our webinar on “Peripheral neuropathy and myeloma” or read the “Peripheral neuropathy Infosheet”. You can also read more about living with complications and side effects in our “Infopack for living well with myeloma”.

This blog was originally published in July 2019 and updated in August 2021.

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