Pain from ADPKD
Pain is common in people with autosomal dominant polycystic kidney disease (ADPKD), affecting about six in 10 people who have been diagnosed with the condition.
ADPKD-related pain can be acute — that is, short-lasting and coming on suddenly — when it may be due to a kidney stone, or bleeding or infection of a cyst. But many people with ADPKD also suffer from chronic or persistent pain when kidney and/or liver cysts expand and press against other organs.
Regardless of its cause, pain should always be taken seriously. Pain can affect your quality of life, cause anxiety, depression and insomnia, lead to financial worries due to days off work, and stress your relationships and family life.
Unfortunately, it is not always possible to cure ADPKD-related pain. But a combination of simple, non-drug measures and the right medication can help you to manage and cope better with your pain.
Causes of ADPKD-related pain
In people with ADPKD, sudden or acute pain is most likely to be caused by:
- Infected cysts / urinary tract infection
- A bursting cyst
- Kidney stones
In people with ADPKD, a very severe headache that comes on suddenly may be a sign of an aneurysm (burst blood vessel) in the brain. Go to brain aneurysm for more information on this rare, but serious complication.
People with ADPKD often get persistent or chronic flank, lower back and/or abdominal pain that is not related to infection, bleeding into a cyst, or a kidney stone. This chronic pain is caused by:
- Developing cysts
- Pressure by cysts against other organs
- Changes in the back muscles and the spine due to enlarging cysts.
Symptoms of ADPKD-related pain
The symptoms of acute pain can vary depending on the source and type of the pain:
- Infected cysts usually result in widespread flank pain (between the lower back and upper abdomen on one or both sides of the body) that comes on suddenly. The pain tends to stay in one general area of the body, and is not relieved by changing your position. You may also feel feverish.
- Bursting cysts cause severe flank pain that tends to be located in one area, and there is likely to be obvious blood in the urine. But you may also have pain in another part of the abdomen or your shoulder (referred pain) if the blood from the cyst collects and presses against surrounding tissues.
- Kidney stones can cause very severe pain (renal colic) that may begin and go away suddenly. It affects the back, the side of the abdomen and sometimes the groin. You may also have blood in the urine, and feel sick and feverish.
Symptoms of chronic pain can also vary:
- Pain directly related to cyst formation tends to be a steady, nagging discomfort. It is often worse when standing or walking, and you may be able to point to the source of the pain.
- As cysts grow and press on other organs, they can cause persistent, nagging pain. Pain from growing liver cysts is often more severe than pain related to kidney cysts, and is often worse when you are standing.
- Problems with the muscles and the spine usually cause a nagging backache that gets worse over time.
Diagnosing the causes of ADPKD-related pain
Your doctor will examine you physically, and ask about your pain (e.g. when it came on, what makes it worse or better, how severe it is). You are also likely to have blood tests to check your liver and kidney function. Other tests depend on the possible sources of your pain (e.g. ultrasound or CT may be used to check if you have kidney stones, or problem cysts in your kidneys or liver).
Treating ADPKD-related pain
Treating the cause should help to relieve acute pain. However, you may also have chronic pain associated with the cysts in your kidneys and liver.
Non-drug measures—e.g. heat pads, massage, and TENS—may be enough to treat a persistent dull pain or backache. But if your pain gets worse you are likely to also need drug treatment.
Some people with ADPKD and their doctors are wary of over-using drugs to control pain. But as long as painkillers are used carefully, there is no reason why you cannot take them to improve your symptoms and quality of life. You should, however, talk to your doctor before starting any painkiller. He or she knows about all your medication and conditions, and can give you specific advice. This is especially important as your kidney function worsens, because the dose of the painkiller may need to be lowered.
In general, drug treatment for pain should start with small doses of a weaker painkiller, gradually increasing to stronger medication as needed:
- Paracetamol can be helpful, especially when taken regularly each day. It can be bought over the counter, and is cheaper if you buy it as ‘paracetamol’, rather than under a brand name.
- Non-steroidal anti-inflammatory drugs (NSAIDs) are sometimes suggested as an alternative to paracetamol, and some (e.g. ibuprofen) are also available without a prescription. However, NSAIDs are generally not recommended for people with kidney problems, and you should not take them unless your doctor has given you the go-ahead. This also applies to NSAID-like drugs called Cox-2 inhibitors (e.g. celecoxib).
- Codeine is a stronger painkiller that can be bought in a low dose in combination with paracetamol. Higher doses can only be prescribed by your doctor.
- Tramadol is another stronger painkiller, and again can only be obtained on prescription.
- Strong opioids are only available on prescription, and are given only when pain cannot be relieved by any other drug.
Other drugs that are used to treat pain include:
- Antidepressants such as amitriptyline, which relaxes muscles and calms nerve endings. This is given in a lower dose than when treating depression, but it can sometimes make you feel ‘hung over’ in the morning. If this is the case, take the medication earlier in the evening at around 8.00 pm.
- Anti-epilepsy drugs, such as gabapentin, which are used when the nerves have become overactive.
- Both amitriptyline and gabapentin cause constipation but it is fine to use laxatives, such as lactolose.
It is worth noting that if you find yourself getting prescriptions for painkillers or other medication on a regular basis, you may be able to get a 'prepaid prescription certificate' which may save you money in the long run.
This approach to treating pain is based on a well-known medical tool, called the WHO pain ladder. It was originally developed by the World Health Organization (WHO) to help people with cancer pain, but is now used to control pain from any cause. Pain is personal, and only you know how it feels. So if you feel you are not getting sufficient pain relief, take a printout of this diagram with you when you next see your doctor.
Pain is a complicated mixture of nerve signals from the body and the brain’s interpretation of these signals. This means that it can be difficult to fully control persistent pain. If this is the case, ask your doctor to refer you to a pain specialist or pain clinic. There are now around 300 pain clinics in the UK. Most are in hospitals and are staffed by teams of doctors, nurses, occupational therapists, psychologists, and physiotherapists, who work together to help people cope and live well with persistent pain.
Preventing ADPKD-related pain
Lifestyle and other measures may help to reduce the likelihood of acute pain from urinary tract infections or kidney stones.
It is difficult to prevent chronic pain, since it is not currently possible to prevent kidney and liver cysts. But a combination of lifestyle measures and medication can prevent the pain from dominating your life. The British Pain Society has very helpful information on understanding and managing persistent pain, over the counter medicines, and pain management programmes.
- Go to the British Pain Society website for information on managing pain.
The information on this page is under review by the PKD Charity using the accredited Information Standard process.
PKD Charity Helpline: The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.
Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.
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