Peripheral neuropathy (nerve damage)

Peripheral neuropathy is the term used to describe damage to the nerves connecting the brain, spinal cord, and the rest of the body. The peripheral nerves are those furthest away from your brain and spinal cord.

In people with blood cancer, the nerves that are most often affected are those in the hands and feet. People often say it is one of the more unexpected side effects of treatment, and that it's difficult to understand or explain to others.

There are many symptoms of peripheral neuropathy, but common ones include:

• tingling or numbness in the hands, feet or legs
• shooting or burning pain in the affected areas
• trouble feeling hot or cold temperatures on the hands or feet
• muscle weakness
• finding fiddly tasks more difficult, like picking up a pen.

It is hard to know how long the symptoms of peripheral neuropathy will last. Some people recover quickly while others may only experience a partial recovery, or have some symptoms that become permanent. However, most people find their symptoms gradually disappear when their treatment for blood cancer has ended.

We go into more detail about the different types of symptoms further down the page.

Your hospital team will monitor you for side effects if you are having blood cancer treatment. It's important to tell them about any symptoms you notice.

Many people say they wished they had sought help for their peripheral neuropathy sooner.

It can be tempting to ignore or downplay the side effects of chemotherapy if it is otherwise working. It's natural to want to stay on a medication that is treating blood cancer, even if you are experiencing side effects. However, peripheral neuropathy can become severe or permanent left untreated. And there may be other chemotherapy drugs you can try that don’t have peripheral neuropathy as a side effect.

If peripheral neuropathy is dealt with early, the treatment that's causing it can be swapped. But if this doesn't happen quickly, you could develop more long-term peripheral neuropathy.

The symptoms don’t usually show up visually, so it can be hard for your doctor to notice and monitor the condition. That’s why it's important that you recognise any new symptoms and tell your doctor about them early on.

It can be hard to identify peripheral neuropathy because people don’t know what to look out for. If you experience any of these symptoms, it can also be hard to know what words to use to describe them to your doctor.

Some phrases people with peripheral neuropathy use to describe what it feels like to them include:

“My feet feel like lead in the morning, but I have numbness at the same time”

“I feel like I’m walking on nails and my feet are on fire”

“I used to get sharp pains and couldn’t move my toes but now its milder and feels more like a tingle”

“I would wake up in the morning with pain and electric shocks in my feet, which felt as though they had been immersed in an ice bucket for far too long”

“I always feel cold, as if I am constantly in ice water”

“I get restless legs at night and my legs get painful”

It's common for people with peripheral neuropathy to liken their sensations to other situations like walking on pebbles or needles to help their doctor understand.

Other words that can describe the sensation are tingling, burning, prickling, stabbing, shooting. Sometimes people talk about experiencing electrical type pains and pins and needles too.

In blood cancer, it is usually certain types of chemotherapy or targeted therapies that cause nerve damage, but sometimes it is the cancer itself. Radiotherapy can also sometimes be a cause. There are other medications and conditions that can cause peripheral neuropathy. Diabetes, vitamin deficiencies, injuries and certain medicines are some examples. Speak to your doctor if you aren’t sure of the cause of your symptoms. This information is about blood cancer causes of peripheral neuropathy.

In blood cancer, some cancer drugs that can cause peripheral neuropathy include:

• vincristine
• vinblastine
• brentuximab
• bortezomib (Velcade).

If you already have peripheral neuropathy and need to start treatment for blood cancer, speak to your doctor. Peripheral neuropathy caused by chemotherapy is different to peripheral neuropathy caused by other things, so it might not necessarily affect your treatment plan, and you might not get chemotherapy-induced peripheral neuropathy. But your doctor will want to reduce the risk of any more peripheral neuropathy as much as possible. In situations like this, you’ll often be asked to score your peripheral neuropathy daily so it can be monitored for changes.

The symptoms of peripheral neuropathy can affect your physical functioning. This can impact on your ability to do everyday tasks like socialising, working, and exercising. It can also cause problems with sleeping. It is normal to feel your mental health is affected too. Keeping a diary of your symptoms can be helpful to recognise what tasks you are finding challenging. It can also help identify triggers for symptoms. You can show this to your doctor to help them understand how peripheral neuropathy is affecting you.

Some people will have one or two symptoms and some people may have more. The symptoms of peripheral neuropathy can vary depending on which nerves are affected. The peripheral nervous system has sensory, motor, and autonomic nerves. Damage to these can cause different symptoms. In some cases, certain situations can trigger symptoms, like cold temperatures triggering nerve pain.

People with blood cancer say that peripheral neuropathy can be a strange and challenging side effect to have, but there are lots of management strategies that can reduce the impact of the symptoms.

The most effective strategy is to treat peripheral neuropathy as soon as possible to prevent further damage to the nerves. Often, doctors will try lowering the dose of the drug that is causing the condition. If this doesn’t help, they may stop the medication and try something else.

Stopping a treatment that is otherwise working well can be difficult for some people to process. You can speak to your doctor about your other options for treatment. There may be other medications you can take that won’t make your peripheral neuropathy worse. If you suspect you have peripheral neuropathy, it's important that you speak to your hospital team first before changing any medication.

Most people find their symptoms gradually improve once they stop taking the medication that's causing the symptoms. Some people find their symptoms continue to get worse temporarily, and then start to improve as their body adjusts to ending the medication and the nerves recover. A smaller amount of people will experience permanent damage to their nerves. However, even in this situation, many people find that their symptoms ease over time.

It is frustrating living with a chronic pain condition, and it is normal to feel overwhelmed when the pain gets bad. However, there are lots of different things that you can try to reduce your pain. You might need to try a few things before you find what works for you. Here are some suggestions:

There isn’t one specific treatment for peripheral neuropathy, but it is common for doctors to prescribe medications to help treat nerve pain.

Many of these medications are typically used to treat epilepsy and depression but can also help peripheral neuropathy. Sometimes people can be concerned that they have been given the wrong type of medication. But these medications are given because they also impact the way that the nerves work and so can be helpful in treating nerve pain.

Gabapentin and pregabalin are two drugs that work in this way, but there are many others that your doctor may prescribe.

You may also be referred to a pain management team if your pain is not improving. These teams are experts in managing pain and may have other methods that can help you.

A TENS machine (transcutaneous electrical nerve stimulation machine) is a machine used for many conditions that cause chronic pain. It is a form of pain relief that involves using a mild electrical current. This reduces pain signals to the spinal cord and brain, and can also help relax your muscles. Some hospitals may allow you to borrow one to try out, or you can buy them online. The NHS has more information on TENS machines.

Your hospital team may refer you to occupational therapy if you are experiencing difficult changes to your lifestyle because of peripheral neuropathy. They can suggest changes to your activities, such as adapting the way you cook, or how to find clothes and shoes that are easy to put on. They can also help with pain management.

You may feel that you want to try different approaches to managing the symptoms of peripheral neuropathy. People have talked about finding massage and acupuncture helpful in relieving their symptoms. If you want to try any complementary therapy, always talk to your medical team first, as there may be certain therapies that aren't safe for you.

It is stressful dealing with such a mix of side effects including pain or nerve damage, whilst also having treatment for blood cancer. You might find relaxation techniques can help you feel calmer and release tension.

If you have peripheral neuropathy in your hands or feet, it is important to protect them from injury.

• Don't let hands and feet get too cold, as this can damage your skin or damage your nerves further. Remember to use gloves and socks when it's cold.
• Be cautious of hot temperatures too. Remember to use oven gloves and be careful handling hot pans when cooking. Testing water temperature with your elbow can be an alternative if your hands are unable to detect it, or use a thermometer.
• Avoid fiddly tasks where you could injure yourself, such as working with a very sharp knife. Ask for help with those more difficult tasks.
• Without full sensation in the hands and feet, it is possible to cause injury to yourself without realising. Check your hands and feet for injuries often and avoid walking barefoot.
• The symptoms of peripheral neuropathy can sometimes make people more prone to falling or tripping over. The best way to prevent this is by removing anything that may cause you to trip. Keeping your home tidy and moving any obstacles such as rugs or wires can make things easier. If you have dizziness, make sure you get up slowly after you've been sitting or lying down. There are many actions you can take to prevent falls.

It’s hard to imagine exercising when you’re in pain. But many people with peripheral neuropathy find it can help the symptoms.

Starting with a small amount and gradually building up the amount you exercise can reduce the pain and strengthen the muscles. Exercise can also improve balance which can help with other symptoms such as falling over.

If you are feeling too unwell to exercise, or can’t exercise, talk to your doctor about other things that could help.

Physiotherapy is also used to help the symptoms of peripheral neuropathy. Working at your own pace, and with someone to guide you, you can gradually build muscle strength and find ways to do the everyday activities that you want to do.

We have some videos of gentle exercises you could start with.

Dealing with the side effects of blood cancer treatment can be emotionally difficult too. People with peripheral neuropathy talk about feeling annoyed that their symptoms have changed their lifestyle. And it can be hard living with a condition that fluctuates every day. For some people the emotional difficulty comes from never having a break from their symptoms.

It can be helpful to know that people do often find an improvement in their symptoms. It can take time but there are options for help. Some people feel that peripheral neuropathy isn’t given priority when they have blood cancer. This can make it hard to ask for help when you need it.

Everyone has a different way of coping. There is no right or wrong way to deal with your emotions. Some people talk to friends or family about it. Others prefer to talk to their medical team, or a mental health professional about it. You can find other patients to talk to about it on our online forum. Or you can talk to our support team too.