Chronic pain is a common challenge when you have autosomal dominant polycystic kidney disease (ADPKD). But there are many treatment options to help you manage your pain and other symptoms so you can feel your best.
In addition to being uncomfortable, living with chronic pain can make it harder to follow a healthy diet, may lead to anxiety and depression, and can make it harder to go about your daily life.
The pain with ADPKD is usually caused by fluid-filled cysts that grow inside the kidneys and liver. When enlarging cysts stretch the capsule of the kidney, they can cause aching pain along your sides and lower back. Belly pain, headaches, chest pain, and leg pain are also common.
Pain and treatments for pain affect people differently, and many things can cause pain for people with ADPKD. So it’s important to talk to your doctor about your specific problems to see what options are best for you.
Diagnosing Pain
Once you’ve been diagnosed with ADPKD, your doctor will work with you to help manage your symptoms and keep your kidneys healthy for as long as possible. It’s important to see them regularly and report any discomfort, changes in symptoms, and pain.
While pain with ADPKD is common as kidney cysts grow and stretch the tissues of the organ, some pain can be caused by serious complications, such as an infection.
To best treat your pain, your doctor has to first diagnose what’s causing it. Your doctor will ask you what your pain feels like and how long you’ve had it. They’ll also give you a physical exam and may test your urine or take images with a CT scan of your kidney or belly.
If your pain is coming from a urinary tract infection, cyst infection, kidney stone, bleeding cyst, or other problem, your doctor may treat it with antibiotics or other medicine or treatment.
If you have a cyst hemorrhage or a lot of blood in your urine, your doctor may suggest medication and rest. You may need to take time off work to limit your physical activity for a few days.
Kidney stones are also common for people with ADPKD and can cause pain and block urine. Tests will confirm if you can pass your stones. If they are too big, you may need to see a urologist and explore other options to break up or remove the stones.
Severe and recurring headaches are another typical concern for people with ADPKD. If you have head pain, report it to your doctor right away. It may be a sign of high blood pressure, which many people with ADPKD have. It’s also possible for headache pain to be a result of a brain aneurysm, which is a bulging blood vessel in your brain that can burst and cause serious, life-threatening health problems, such as a stroke, brain damage, or death.
If you do not have an immediate problem (such as an infection), then you may have chronic pain. Chronic pain is daily pain that goes on for many weeks. It may come and go, or get worse over time.
Managing Chronic Pain
Chronic pain affects up to two-thirds of people with ADPKD. Sometimes even after many tests, you and your doctor may not know exactly what is causing the pain and it may take some trial and error to find ways to treat it.
Doctors recommend starting with simple, non-invasive ways to try to treat your pain. These methods have few side effects. If these do not work or stop working, then you can try more complex and invasive procedures and/or surgery.
For back or side pain, you can try:
- Heat
- Ice
- Massage
- Physical therapy
- Whirlpool bath or tub
Your doctor may also recommend:
- The Alexander technique. A trained technician teaches you how to move and position your body to help ease discomfort and pain.
- Transcutaneous electrical nerve stimulation (TENS). A doctor places electrodes on your body, and they deliver low-voltage electrical pulses that disrupt pain signals to the spinal cord and brain.
- Acupuncture. Studies on back pain show this traditional Chinese method of inserting thin needles into specific points on your body may reduce your need for pain medications.
- Over-the-counter pain relievers. Be sure to check with your doctor before taking over-the-counter pain medicines such as acetaminophen or ibuprofen. Some may harm your kidneys or interfere with other treatments.
If these medications and physical treatments don’t work or the pain continues to worsen, your doctor can also prescribe opioids and stronger pain-relieving drugs. But it’s important to consider the side effects and risk of addiction to these medicines.
Other Options
If medication and physical treatments do not work or stop working, your doctor may suggest a minimally invasive procedure, where they use needles or small cuts that heal quickly to address a problem that is causing you pain.
Options include:
- Nerve blocks. A doctor injects medications to block the pain pathways in the nerve system in your belly.
- Renal denervation. During this outpatient procedure, doctors burn the nerves in the renal arteries so they are less active, resulting in less pain. This can be used to manage medicine-resistant high blood pressure and pain.
- Spinal cord stimulation. A doctor implants a device in your back to moderate pain signals. Once you have the device, you can’t have any more MRI tests done.
Surgery
If problems with pain persist or are severe, your doctor may suggest surgery. Surgery can be done to drain fluid from cysts, remove all or parts of cysts, stop cyst bleeding, and fix other issues in the liver, kidneys, and belly.
Surgery is an option for some people, but your options vary, depending on the number and size of your cysts and how they are affecting other organs and areas around them. Some surgeries, including those to drain fluid from cysts, may ease pain for a while, but the pain may come back as the cysts fill with fluid again over time.
Removal of one or both kidneys and kidney transplantation may be an option for people with large, and/or low-functioning kidneys. A liver transplant is the last option for those with liver pain.
Another option for kidney pain is transcatheter arterial embolization (also known as TAE or renal coiling), where coils are placed in the arteries connected to the kidneys to limit or block blood flow. This makes your kidneys shrink and decreases pain.
Managing Your Mental Health
Living with chronic pain can be frustrating and challenging, especially when you don’t have a cure. Many people with ADPKD report anxiety, depression, and other negative feelings. This can impact how consistent you are with diet and exercise, how well your treatments work, and your overall well-being.
If you have any mood changes or concerns, it can help to talk to someone such as a therapist, counselor, social worker, or your doctor. Your doctor can also suggest resources or places to go for the support you need.
