Peripheral neuropathy (nerve damage)
Some treatments for blood cancer can cause peripheral neuropathy, which is a type of nerve damage. It's important to speak to your doctor if you think you have this side effect.
Peripheral neuropathy can be a side effect of blood cancer treatment. Some chemotherapy and other drugs can cause symptoms of peripheral neuropathy. This is called chemotherapy-induced peripheral neuropathy (CIPN).
You may not have heard much about peripheral neuropathy, as other side effects are often more common. But it's important to know about it because if you get it, seeking treatment early is important.
On this page:
- What is peripheral neuropathy?
- What are the symptoms of peripheral neuropathy?
- Telling your doctor about your symptoms
- What causes peripheral neuropathy?
- What does peripheral neuropathy feel like?
- How can peripheral neuropathy impact daily life?
- Different types of peripheral neuropathy symptoms
- Managing peripheral neuropathy
- Your emotions and peripheral neuropathy
What is peripheral neuropathy?
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.
What are the symptoms of peripheral neuropathy?
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.
Telling your doctor about your symptoms
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.
What causes peripheral neuropathy?
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:
- 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.
What does peripheral neuropathy feel like?
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.
How can peripheral neuropathy impact daily life?
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.
Different types of peripheral neuropathy symptoms
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.
The job of the sensory nerves is to detect different temperatures, pain, and pressures. If these nerves are affected, symptoms can include:
- tingling or numbness in hands, feet, arms or legs
- trouble detecting hot or cold sensations like a hot kettle
- burning feelings and shooting pain in the hands feet, fingers or toes
- not being able to feel pain such as a cut on your foot
- hearing loss.
Motor nerves control movement between the muscles. Symptoms of motor nerve damage can include:
- muscle weakness
- muscle pain
- difficulties with balance and coordination
- trouble using fine motor skills, like picking up a small object
- falling or tripping over
- muscle twitches
- muscle cramps or muscle wasting
- breathing and swallowing difficulties (if your chest muscles are affected).
The job of autonomic nerves is to control automatic functions in the body like your heart rate, blood pressure, temperature, digestion, and urination. Symptoms of automatic nerve damage can include:
- dizziness or feeling faint
- feeling very hot or very cold
- sweating more or less than usual
- changes to your digestion, such as constipation
- trouble urinating
- sexual problems.
It is important to talk to your doctor if you are experiencing these symptoms. Managing peripheral neuropathy early is important to prevent further damage and complications.
I started a new drug, which started working within weeks, but it left me badly nerve damaged. I haven’t got full use of my hands, and at first, I didn’t have much feeling in my feet either.
Mike, diagnosed with chronic lymphocytic leukaemia (CLL).
Read Mike's story about peripheral neuropathy and how he is learning to live with it.
Managing peripheral neuropathy
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.
Coping with pain
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.
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.
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.
How to prevent falls with peripheral neuropathy
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.
Financial help with chronic symptoms
In some cases, blood cancer treatment side effects can impact your ability to work and put a strain on your finances. It can be helpful to know information about your rights at work and any financial help you could be entitled to.
Your emotions and peripheral neuropathy
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.
Coping with changes to your body
Learn more about why side effects have a big emotional impact too, and how other people have found ways to cope.