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Pain Management in PKD

By Theodore Steinman, MD Clinical Professor of Medicine at Beth Israel Deaconess Medical Center and Harvard Medical School

Pain is a frequent happening in patients with polycystic kidney disease (PKD). While there is a general relationship between the size of the kidney cysts and pain, this is not always the case. There are many causes for pain:  

1. Pain related directly to expanding kidney cysts with bleeding into cysts.
2. Mechanical back pain related to a change in posture because of the enlarging cysts and also nerve irritation from cysts.
3. Pain related to infection occurring in kidney cysts
4. Pain related to kidney stone formation (which occurs more frequently in patients with PKD as compared to the general population)
5. Pain related to liver cysts in the patient with PKD.

A detailed history, physical examination and examination of the urine can frequently pinpoint the cause for pain.  That which produces acute pain in the patient with PKD can also be different from that which causes chronic pain.

Acute pain is frequently related to bleeding into an enlarging kidney cyst.  With bleeding there can be the appearance of blood in the urine, but this is not always the circumstance.  When pain is related to infection in the kidney cyst, there is often the occurrence of fever and other findings of infection.  The passage of a kidney stone can also be associated with bleeding and often it is difficult to determine if bleeding into a cyst or passage of a kidney stone is the primary cause for the problem.

Chronic pain is often related to mechanical back pain.  Enlarging cysts can cause an increase in the waist size and a change in posture which leads to strain on back muscles. This sequence of events can accelerate the normal degenerative aging process in the spine.  This “imbalance” of the spine can be the source of a variety of different pain patterns.  The mechanical form of back pain tends to get worse with the passage of time.  Back muscles get thicker if kidney cysts enlarge in an attempt to compensate for the increasing abdominal girth.  This process can start a vicious cycle.

Evaluation for the causes of pain frequently involves either an ultrasound, abdominal CT scan or an MRI of the abdomen.  The choice of which study to use first is best made by the physician evaluating the patient. 

Approaches to Treatment of Pain

Every individual acts differently and therefore, that which produces pain in one person could be experienced differently in the next person.   Physicians must acknowledge that the patient has pain and attempt to understand the cause for it.  Management of pain must be done in a stepwise sequence, first employing methods that are non-invasive and do not require medication.  Such techniques as ice massage, heating pads, whirlpool baths, use of the Alexander Technique and psychobehavioral modification can all be used.  It is often difficult to cure chronic pain, but the goal is to reduce the frequency and severity of pain so as not to interfere with one’s lifestyle.  If one expects a total cure of pain, then such expectations usually result in disappointment because a complete cure of pain is extremely difficult. 

Once all the non-medication approaches have been tried, then a stepwise sequence of medications can be used.  Larger than usual doses of Tylenol can be used effectively.  Other drugs can be added on top of this, but at all times, no patient should take any over-the-counter medication, i.e. Motrin, Advil, Celebrex, Vioxx, etc., without talking to their physician.  While this class of non-steroidal drugs can be effective in relieving pain, all drugs in this category carry the risk of producing kidney problems (kidney failure).  There are other non-narcotic drugs that can be added in combination to these medications to achieve pain relief.

After all else fails, then low dose narcotics can be used sparingly, but always with the expectation that these drugs would be limited in use for any prolonged period of time.

If the above drugs do not produce relief of pain, then more invasive techniques can be tried, such as transcutaneous electrical nerve stimulation (TENS), acupuncture, spinal cord stimulation (neuromodulation) and injection of narcotic agents directly into the spinal columm.

The very last step is a surgical approach.  In the case of kidneys, one can remove nerve fibers from around the kidney or total removal of the kidney in cases of intractable pain With enlarging liver cysts, there can be certain surgical procedures that decompress the cysts to produce pain relief. 

Pain is a continuing issue in the patient with PKD.  The most important thing is not to give up hope, but to pursue a detailed evaluation and then a stepwise approach to the management of pain.  The patient should not accept narcotics as the first line of treatment.  The goal is to empower patients to be active participants in their own care.