Managing ADPKD Pain

Reading that pain can be difficult to treat can be upsetting. Please contact our helpline (0300 111 1234, email [email protected]) if you’d like emotional support. We give further sources of support later on this page.

We have written this web page with adults in mind. It’s less common for children with ADPKD to suffer pain, but some do. Some of the therapies we describe below are not suitable for children. Speak to your doctor for advice on treating pain in children.

• Up to 6 in every 10 people with ADPKD have pain some or most of the time.
• The causes and strength of pain differ between people.
• New severe pain (acute pain) is often caused by a problem such as a kidney stone, burst cyst or urinary tract infection. The pain usually gets better once the problem is treated.
• Long-term pain (chronic pain) is often caused by enlarged kidneys or liver.
• In general, experts recommend trying treatments for long-term pain in this order:
  • Step 1: physical therapies, psychological approaches and mild pain medicines.
  • Step 2: acupuncture, nerve stimulation and stronger pain medicines.
  • Step 3: opioid pain medicines, and procedures and surgeries to treat the cause of the pain or, less commonly, to block nerve signals.
  • Step 4: removing one or both kidneys or removing part or all of the liver.
• Multiple specialists may help to treat your pain.
• Share your views and choices with your doctors so you can design a plan that works well for you.

Up to 6 in every 10 people with ADPKD have pain some or most the time.

About 4 in every 10 adults in the UK general population have long-term pain.

So, long-term pain does seem to be more common in people with ADPKD.

Being in constant or regular pain can have a big effect on your life.

For example, it can lead to:

• being less able to do your job or normal daily activities, such as housework
• not being able to look after your family or play with children as much as you would like
• missing out on social activities
• avoiding hobbies, such as contact sport, that you used to enjoy
• feeling lonely, left out or not understood
• feeling that you have less value or purpose
• problems sleeping, leading to tiredness and low mood
• anxiety and depression
• reduced sex life

You might find you can only be active for a certain amount of time before needing to rest. When pain is very bad, you might need to rest in bed.

Depression and anxiety can make it harder to motivate yourself to do things that help your pain.

All these issues show just how important it is to get on top of pain. There are many therapies that can help, which we explain later.

It may also help you to connect with others with ADPKD pain so you can listen to and support one another. You can connect with people through our PKD Support Groups and Facebook groups. Our helpline is also available on 0300 111 1234 and by emailing [email protected].

Acute pain comes on quite quickly and is often severe. The pain can be sharp or stabbing. You may get acute pain, for example, if you have a kidney stone, burst cyst or urinary tract infection.

As your ADPKD worsens over the years, you may get acute pain more often.

The good news is that acute pain usually gets better with the right treatment.

Chronic pain is any pain that lasts for 3 months or more. We call it long-term pain here.

Long-term pain may be quite mild, such as a nagging discomfort or dull ache. It can be bad too, such as a stabbing pain. Long-term pain in people with ADPKD is often caused by enlarged kidneys or liver. The membrane around these organs can get stretched, causing pain. Pain can also occur when these organs push on nearby organs or cause you to change your posture.

You might feel the pain in your side, lower back or tummy (abdomen). Back pain is the most common.

Pain in your side, back or abdomen can also be caused by things other than ADPKD. These include poor posture or problems with your back (such as your spine, muscles or ligaments):

It may seem strange, but the level of pain people get doesn’t always match their kidney and liver size. Some people with very large kidneys have little pain, and others with smaller kidneys have strong pain.

ADPKD pain can be hard to predict too; you might have very different levels of pain from day to day.

Once you have pain from ADPKD, your nerves can become more sensitive to pain signals, making it worse.

If you have sudden severe pain, seek urgent medical care. It could be a sign of a problem such as an infection or burst cyst.

If your long-term pain is getting worse or your current treatments aren’t working, see your GP or kidney doctor. If your pain is very bad and you can’t get an appointment quickly, call 111. They can advise you on where to get urgent medical care.

If your GP or kidney doctor don’t ask about pain in your check-ups, raise this. Explain how pain is affecting your life and ask for specialist support.

Your doctor will examine you and do tests to find the cause of your pain. They might refer you to other specialists at hospital or clinics for tests or treatments.

If your doctor thinks your pain could be linked to ADPKD, tests may include:

• a blood test
• a urine test
• a scan of your kidneys or liver
• taking a sample of fluid from a cyst

They’ll also assess whether your pain could be caused by something other than ADPKD. For example, some back pain is caused by poor posture or problems with parts of the spine.

People can experience pain differently, making it hard for doctors to assess. For example, how much an injury hurts does not always match the amount of damage.

Your doctor will ask you to describe your pain, possibly using a series of questions. They’ll ask how pain is affecting your life and what makes it worse . They may ask about your mental health too because pain can cause depression and anxiety.

Explain your pain as best you can so your doctor understand how it’s affecting you.

They’ll recommend medicines for you to take while you wait for any test results.

Acute pain usually ends once the source is found and treated. For example, you may need treatment for a kidney stone, burst or bleeding cyst, or a urinary tract infection.

While the source is being treated, your doctor can give you pain medicines to reduce the pain.

Long-term ADPKD pain can be hard to treat but many different therapies can help. Which approach works best differs from person to person. It may take some time to find the best approach for you.

The table below shows the main steps to managing long-term pain from ADPKD. Most people start at the top and work down. Your treatment team will work with you to decide what options are best for you. This depends how much pain you’re in and the likely cause.

We explain each of the options later on this web page.

Table: Options for managing long-term ADPKD pain, as recommended by experts

As well as trying different medicines and treatments, think about adjusting your daily routine. This can help you to get most out of the times when your pain is lower. You should rest when needed; pushing through bad pain doesn’t help.

Keeping a pain diary is useful.

Note down:

• how bad your pain is (for example on a scale of 0 to 10, where 0 is no pain and 10 is the worst pain you can imagine)
• where it is
• when it happens
• what triggers it

This information will help you and your doctor find the best ways to manage your pain.

Your GP may refer you to different specialists depending on:

• the likely cause of your pain
• which treatments might help

These specialists could, for example, include a nurse, pharmacist, physiotherapist, psychological therapist, counsellor, pain specialist and occupational therapist. An occupational therapist can help you work out how to adjust your daily routine.

These specialists might be at a hospital, outpatient clinic, health centre or special pain clinic.

Although these people specialize in managing pain, they might not be familiar with ADPKD. So, it’s important that everyone managing your pain works together as a team. You’re part of the team too. Share your choices and views.

If you don’t feel listened to or if people aren’t working together, give this feedback.

We explain each approach to managing long-term ADPKD pain below. See the earlier table for a summary of the different steps.

A range of physical therapies might help with your pain. These approaches are proven to help some types of pain. They haven’t been studied in people with ADPKD.

A physiotherapist can teach you some of the approaches below.

Applying heat and cold

Applying heat or cold to the skin nearest your pain might reduce it. You could try a heat pad, hot water bottle, wheat bag (which is heated in the microwave), a cold pad, or ice wrapped in a wet towel.

It’s usual to apply heat or cold for 10–15 minutes. You can repeat this every 2 hours. Be careful not to burn yourself.

You could also try an ice massage. Lie on your side and move ice over the area in circles.

Light exercise

Activities such as walking, swimming, gardening and dancing can ease pain. Light exercise helps to reduce any tension you’re holding that is making your pain worse. It also increases levels of chemicals called endorphins, which are the body’s natural painkillers.

Showers and baths

A warm shower or bath may help to ease pain. Whirlpool baths can be particularly good at releasing tension and decreasing pain.

Posture and movement

Poor posture and bad movement patterns can make pain worse. A physiotherapist can give you advice about how to hold your body better while sitting, standing and moving.

They can also suggest equipment or shoes that might help you.

One way to improve your posture and movement is the ‘Alexander technique’. You can learn about it on the NHS website.

Pain and mental wellbeing are closely connected. Psychological approaches use your own thoughts to reduce pain and its effect on your emotions and life.

These approaches haven’t been studied for ADPKD pain but are known to help some other types of long-term pain.

Therapies based on thoughts and behaviour

These therapies include cognitive behavioural therapy (CBT), mindfulness, and acceptance and commitment therapy (ACT).

These therapies can help you to:

• learn how the way you think can affect your pain
• reduce negative feelings, such as feeling helpless or alone
• find different ways to do the same thing
• work out which things matter most to you, and achieve them

Your GP may refer you to a counsellor or a clinical psychologist to teach you these techniques.

You can find out more from these NHS webpages:

• Cognitive behavioural therapy
• Mindfulness
• Acceptance and commitment therapy

Meditation and relaxation

Relaxation and meditation can help to lessen pain. They can also help to ease anxiety and stress and improve your sleep and mood.

You can learn about meditation on the NHS website. Apps are also available to help you relax and meditate. We give examples at the end of this page.

Paracetamol is usually the first pain medicine people try for ADPKD pain. It’s usually safe to use and has few side effects when taken at the correct dose.

People with ADPKD shouldn’t use non-steroidal anti-inflammatory drugs (NSAIDs) long-term as they can damage the kidneys. Examples of NSAIDs are ibuprofen (Nurofen®), aspirin and naproxen. However, if you have acute pain and your kidneys work well, your doctor might recommend NSAIDS for a few days.

Acupuncture uses fine needles put through the skin at trigger points. It helps to lessen pain in the short term for some people. It hasn’t been researched for ADPKD pain.

Find out more about acupuncture on the NHS website.

Transcutaneous electrical nerve stimulation (TENS) uses a weak electric current to excite your nerves. It can ease some types of pain, such as pain from kidney stones. It hasn’t been researched for long-term ADPKD pain.

Experts think TENS works by stopping pain messages reaching your brain. It might also make your body release endorphins, which are a natural painkiller.

Find out more about TENS on the NHS website.

If paracetamol is not reducing your pain, your doctor might suggest adding or swapping pain medicines.

Initial options your doctor may suggest include:

• Using a tricyclic antidepressant (amitriptyline, dosulepin or nortriptyline) alongside paracetamol
• Using gabapentin (a treatment for nerve pain and epilepsy) alongside paracetamol

You might be surprised that antidepressants and epilepsy treatments are listed above. These drugs are well proven to reduce some types of nerve pain. They haven’t been researched in ADPKD but doctors sometimes prescribe them for ADPKD pain.

If the pain medicines listed above don’t work for you (or aren’t the right options for you), another option is tramadol. Tramadol is a weaker opioid that can be used alone or alongside some other pain medicines. Your doctor might suggest using it only when your pain is bad despite taking milder medicines.

If tramadol doesn’t work for you (or isn’t right for you), another option is clonidine.

All of these pain medicines can have side effects. You may need to try a few different ones before finding one that works well and has side effects that you can manage.

You should only use opioids if milder pain medicines aren’t working. This is because they have many side effects and it’s easy to get addicted.

Your body can get used to opioids, meaning you need to take higher and higher doses to have the same painkilling effect.

The weakest opioids include codeine and dihydrocodeine. Tramadol is slightly stronger, followed by morphine, oxycodone, hydromorphone and methadone. Fentanyl and buprenorphine are much stronger opioids. They can be given as patches you put on your skin to release them slowly over days.

Doctors usually only prescribe high doses of opioids for short-term use.

To reduce your risk of getting dependent on opioids, keep using physical therapies and other treatments that help your pain. You can then keep your use of opioids down as much as possible.

Be careful to use the dose your doctor prescribes you. If your kidneys don’t work well, you may need to take a lower dose of opioids than usual.

If a large cyst is the likely cause of your pain, your kidney doctor may suggest draining the fluid out of it. This is a useful test to see whether it reduces your pain.

The cyst is likely to refill over time. If draining it helped you, you can have it treated to stop it coming back.

Find out more on our webpage Draining and treating cysts.

Most people don’t have nerve treatments. Doctors only usually recommend them if other treatments aren’t working.

We sense pain when nerves carry a signal about possible tissue damage to our brain. Treating nerves to block these signals often reduces pain a lot.

These procedures are invasive. This means they involve needles or other equipment being put into the body. They have some risks and side effects, which can be severe. They also don’t work for everyone. This is why they’re only used when safer treatments have failed.

Expert Yuki Heath tells us that nerve treatments are not widely available on the NHS to treat ADPKD pain. Availability can vary depending on the expertise at your local hospital.

Coeliac plexus block

This may help with pain caused by an enlarged liver. A doctor or anaesthesiologist will inject an anaesthetic (numbing medicine) into a group of nerves called the coeliac plexus. These nerves are in your abdomen (tummy).

This injection only works short term. It’s a way to see whether a bigger procedure would help you.

Radiofrequency ablation of the splanchnic nerve

If a coeliac plexus block works for you, a long-term solution is to treat the nerve that’s probably carrying the pain signal from your liver or nearby tissues. This is called the splanchnic nerve.

A doctor or anaesthesiologist will treat the nerve using radiofrequency ablation. This uses an electric current to produce heat that numbs the nerve.

Cutting nerves from the kidneys

If a coeliac plexus block doesn’t work for you, the pain signals might be coming from your kidneys.

Cutting nerves from the kidneys may help, although there hasn’t been much research on this.

There are a few different procedures and surgeries that can be used to break the nerves. A specialist will talk you through the best options for you, including the risks and benefits.

Spinal cord stimulation

This treatment involves surgery to put a small device into your body. This device delivers an electric current through a wire to nerves in your spine to reduce pain signals. You can control the current with a remote control.

Spinal cord stimulation can help to reduce some types of pain, although it doesn’t work for everyone. It hasn’t been researched in ADPKD.

When a kidney (or both kidneys) is the source of ADPKD pain, removing it usually works very well to reduce pain. This surgery is called nephrectomy.

Nephrectomy is major surgery and comes with risks, so it’s used only when all other methods haven’t worked.

If you have a kidney removed, your kidney function will drop. So, you might well need dialysis or a transplant sooner than you otherwise would. If you have both kidneys removed, you will need a kidney transplant or dialysis.

Find out more on our webpage on Kidney removal (nephrectomy).

When an enlarged liver is the source of ADPKD pain, removing part of it usually works well to reduce pain. This is called partial hepatectomy.

Partial hepatectomy is major surgery and comes with risks, so it’s used only when other methods fail.

Rarely, people have their whole liver removed (full hepatectomy) followed by a liver transplant.

Often, ADPKD pain can’t be avoided but can be managed. Here are a few steps you can take to reduce your chance of getting pain from ADPKD:

• Drink enough water to avoid thirst. This can help to reduce your risk of urinary tract infections and kidney stones, which can cause pain.
• People who are obese tend to have worse ADPKD pain, so it’s a good idea to eat a healthy diet and stay active. This can help you to stay a healthy weight (usually, a body mass index under 25 kg/m2).
• Avoid sports where you’re likely to get a knock to your kidneys. This reduces your chance of getting pain from a burst or bleeding cyst. However, balance this against the benefits of your favourite sports on your health and wellbeing.

Many of our supporters have personal experience of managing ADPKD pain. You may find it useful to join one of our support groups or Facebook groups or call our helpline. Through these groups you can listen to and support one another.

Our helpline offers emotional support, practical advice and information. Call 0300 111 1234, email [email protected] or contact us on Facebook messenger. The helpline is open 09.30-17.00 Monday to Friday except bank holidays.

There are organizations dedicated to helping people living with pain. These include Action on Pain, Pain Concern, and the British Pain Society. See below for contact details.

• Urinary tract infections
• Kidney stones
• Blood in your wee
• Polycystic liver disease
• Draining and treating cysts
• Kidney removal (nephrectomy)

• Live well with pain has a toolkit to help people self-manage their pain.
• Action on Pain provides support and advice for people living with pain ([email protected]; 0345 603 1593).
• Pain Concern works to improve the lives of people in pain and those who care for them (0300 123 0789; [email protected]).
• The British Pain Society has information on managing pain.
• The Faculty of Pain Medicine has information on pain medicines and other treatments.
• The NHS has information on physiotherapy, acupuncture, TENS, meditation, cognitive behavioural therapy, mindfulness, acceptance and commitment therapy, paracetamol and non-steroidal anti-inflammatory drugs.
• You can find a range of free and paid-for mobile phone apps for relaxation, mindfulness and mediation on Google Play and the Apple App Store. Examples are Calm and Headspace, which both require subscription.
• Apps are also available to help you self-manage your pain. An example is the Curable app, which requires subscription. 

The photos on this webpage are freely available on Pexels.com. The medical history of the persons shown is unknown.