Acute pain comes on quite quickly and is often severe such as a sharp pain. People with autosomal dominant polycystic kidney disease (ADPKD) may get acute pain if they have a kidney stone, burst cyst or urinary tract infection. As your ADPKD progresses, you may have problems that cause acute pain more frequently. The good news is that acute pain usually gets better within a few days of treatment.

Chronic pain lasts for months or years. It may be quite mild, such as a nagging discomfort or dull ache, but it can be severe too, such as a stabbing pain.

Chronic pain in people with ADPKD is often caused by enlarged kidneys or liver. These can push on other organs or change your posture. You might feel the pain in your side, lower back or tummy (abdomen).

About 6 in every 10 people with ADPKD have chronic pain. It can be hard to treat, especially if the cause can’t be resolved. However, there are many different approaches that can help to reduce chronic pain or make it more manageable

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 you have chronic pain that is getting worse or is not manageable with the treatment you have been recommended, see your GP or kidney specialist promptly. They can investigate the cause of your pain and recommend a range of treatments. They can refer you to other services, such as a pain management clinic, as needed.

Your doctor will examine you and do tests to find the cause of your pain so it can be treated. They might refer you to other specialists at your local hospitals or elsewhere for tests or treatments.

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

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

Your doctor or specialist will ask you to describe your pain, possibly using a questionnaire. They’ll want to understand how pain is affecting your life and any triggers that make it worse.

They’ll recommend medications for you to take while you wait for the results of your tests.

Acute pain can usually be relieved within days once the source is found. 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 a short course of painkillers to reduce the pain if needed.

Some people with ADPKD are eligible to take a medicine called tolvaptan. Tolvaptan is prescribed by kidney specialists to slow the growth of kidney cysts. Some patients find it reduces their pain too. To learn more about tolvaptan and whether you might be eligible, see treatments for ADPKD.

Surgery is sometimes considered for people whose pain is caused by a large cyst or very big kidneys. Kidney surgery such as removing a large cyst or kidney can be complicated and the outcomes aren’t guaranteed. Treating multiple smaller cysts seldom works to relieve pain, unfortunately.

Ask your surgeon or kidney specialist to explain whether surgery might help to reduce your pain and the risks involved. If surgery is not appropriate or you decide against it, other approaches can help you to manage your pain, which we cover below. These other approaches can be useful for people have surgery too.

If it’s not possible to find or resolve the cause of your pain, a range of treatments and techniques can reduce its impact on your life. It can take time to find the best approach for you, so persevere.

As well as trying different medicines and treatments, you may want to adjust your day-to-day routine. This can help you to get the most out of the time periods when your pain is lower, and to rest when needed. Your GP can also refer you to an occupational therapist who can help you to plan pacing your work.

It can also be helpful to keep a diary of your pain. Note down the severity, location, and timing of your pain as well as anything that triggers it. This information will help you and your doctor to find the best ways to manage your pain.

Your doctor may refer you to a team of specialists in one of the pain clinics across the UK. You might see a physiotherapist, clinical psychologist or an anaesthetist, for example.

Your doctor and other specialists may suggest:

• trying different pain medications to see what works best and is safest in the long term
• physiotherapy to help with movement despite pain
• psychological techniques to manage the impact of pain on your mental health and quality of life
• treating your nerves to stop or reduce pain signals.

We cover each of these approaches below. You and your treatment team should review your treatment plan regularly to check it’s working well for you.

Depending on the cause of your pain, your doctor or pain specialist may recommend you take painkillers (analgesics) long term. As painkillers have side effects, you’ll need to work together to find the medicine that best treats your pain while having manageable side effects.

The main types of pain medicine are below. It’s common to start at the top of the list and only work down if you’re not getting enough pain relief.

Paracetamol is a painkiller that you can buy over the counter from chemists and some shops. It’s safe to use and has few side effects when taken at the recommended dose. If it doesn’t work well on its own, your doctor might suggest adding another pain medicine.

These include ibuprofen, aspirin and naproxen. They can reduce pain caused by swelling (inflammation). They can have side effects such as stomach problems and if used long-term they can reduce your kidney function. For this reason, people with ADPKD are usually advised not to use non-steroidal anti-inflammatory drugs for more than a few days.

Opioids include codeine, tramadol and morphine. They’re used for more severe pain and come in a variety of strengths. They’re generally only for short-term use because they have many side effects and you can become dependent on them. For some people, opioids can cause pain to worsen. For these reasons, your doctor will probably ask for the advice of other specialists before prescribing opioids to you long-term.

Some medicines used to treat other conditions, such as epilepsy or depression, can be effective for long-term or chronic pain too. Examples are:

• antidepressants, such as amitriptyline and duloxetine
• anti-epilepsy drugs, such as gabapentin and pregabalin.

Taken regularly, they can reduce certain types of pain. There has not been research to assess how well they manage ADPKD pain. However, if other medicines have not worked for you, your doctor may suggest you try these. Like other pain medications, they can cause side effects.

There are a range of manual therapies that might help you to manage your pain. These include:

• heat or cold pads
• transcutaneous electrical nerve stimulation (TENS), which uses a mild electric current
• acupuncture, which uses fine needles to stimulate the body
• massage.

You can learn how to use heat or cold pads or a TENS at home.

There are many forms of acupuncture and massage. Some are considered complementary therapies, which means they’re not mainstream healthcare. Most are safe but many are not proven to reduce pain. Ask about the costs, benefits and risks.

Physiotherapists can teach you ways to manage your pain, be more active, and reduce the impact of pain on your life. You might see a physiotherapist separately or as part of a team at a pain clinic.

Pain and mental wellbeing are closely intertwined. If pain is affecting your mental health, psychological support can help. Also, psychological techniques might help you to control your pain and reduce its effect on your life.

Psychological techniques can help you to:

• understand how the way you think can affect your pain
• reduce negative feelings, such as feeling helpless or alone
• find different ways of doing the same thing
• prioritise the things that truly matter to you.

Techniques include cognitive behavioural therapy (CBT), mindfulness, and acceptance and commitment therapy (ACT). You can learn these from self-help guides, which your doctor can recommend. Your doctor may refer you to a counsellor or a clinical psychologist in a pain clinic to teach you these techniques.

We sense pain when nerves carry a signal about possible tissue damage to our brain. Some procedures can lessen this signal. They include:

• destroying nerves from the kidney with an injection (coeliac plexus blockade) or heat (radiofrequency ablation)
• implanting a small device into your back that sends electrical pulses through wires to your spinal cord (spinal cord stimulation).

Some people find these procedures help them. However, they carry some risks and are not proven to help relieve pain. Your specialist may suggest them depending on your health and how much your pain is affecting you. Ask them to explain the possible benefits and risks so you can make an informed decision about whether to proceed.

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.

Our helpline offers emotional support, practical advice and information. The number is 0300 111 1234 and it is open 09.30-17.00 Monday to Friday except bank holidays.

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

• Understanding pain in ADPKD
• Urinary tract infections
• Kidney stones
• Blood in the urine
• Liver cysts and polycystic liver disease

• Live well with pain has resources to help people self-manage their pain.
• Action on Pain provides support and advice for people living with pain (; 0345 603 1593).
• Pain Concern works to improve the lives of people in pain and those who care for them (0300 123 0789).
• The British Pain Society has information on managing pain.
• The Faculty of Pain Medicine has information on pain medicines and other treatments.
• The NHS website has information on managing chronic pain, physiotherapy, acupuncture, TENS, paracetamol and non-steroidal anti-inflammatory drugs (NSAIDs).