Relieving Pain - Part I

Pain. For many people about to undergo a BMT, the prospect of pain is more frightening than any other potential complication, including death. Yet many patients are never advised, or think to ask, what steps the transplant team will take to relieve pain should it occur.

In this issue we'll examine the type of pain BMT patients sometimes experience and the various drugs used to control it. In the May 1993 issue, we'll take an in-depth look at some of the non-drug techniques for controlling pain that, if learned in advance of the BMT and used in conjunction with pain medications, can provide added relief.

What is pain?

Today's pain specialists agree that pain is whatever a patient says it is, wherever, whenever and to whatever degree he or she says it occurs. The sensation of pain is influenced not only by physical factors such as tissue damage, but by psychological, social and environmental factors as well. A football player who cracks a rib while making a spectacular play, for example, may feel only a twinge during the excitement of the game. When that distraction ends, however, his pain will become more intense.

Two different people with the same amount of tissue damage may experience very different levels of pain. Moreover, each person's body absorbs and processes pain medications differently. Thus, the amount of medication required to ease one person's pain may differ greatly from that required to ease another's pain. In short, pain is a very personal experience requiring a highly individualized response from the medical team.

Pain can be chronic or acute. Chronic pain persists over months or years and is caused by irreparable tissue damage or uncertain causes. Often, chronic pain can only be controlled; its source cannot be eliminated.

Acute pain, on the other hand, has a known cause, is shorter in duration and ends once the tissue damage is healed. Most pain experienced by BMT patients is acute pain. The word "acute" does not mean that the pain is sharper or more uncomfortable. It simply refers to the length of time over which pain occurs.

How Pain is Experienced

Pain in BMT patients is usually caused by temporary inflammation of tissues or nerves. The problem may result from chemotherapy and/or radiation administered pre-transplant, infection, graft-versus-host disease, veno-occlusive disease or medications the patient is taking.

The physical damage is detected by sensors at the tissue or nerve site called "nociceptors." The nociceptors transmit distress signals to the brain via a system of nerves that connect to the spinal cord and then the brain.

Suffering is a person's response to pain signals received by the brain. The degree of suffering varies greatly according to the person's emotional and physical condition at the time pain is experienced. Fatigue, depression, anxiety, physical weakness, memories of how well the patient (and/or doctor) managed the pain in the past and fears about the cause of the pain can greatly increase the suffering associated with pain.

Blocking Pain Signals

The sensation of pain is relieved by blocking the pain signals as they travel from the site of the injury to the brain. Blocking is accomplished through the use of drugs or through a combination of drug and non-drug therapies.

The most commonly used pain medications for BMT patients are "opioids" (narcotics). Opioids include drugs such as morphine and hydromorphone (Dilaudid). Non-opioid drugs such as aspirin, Motrin and Tylenol are often not strong enough to provide sufficient pain relief, and may have side effects that can be problematic for BMT patients. (See the article on page 5 for more about pain medication side effects.)

Non-drug therapies have been used successfully at some BMT centers in conjunction with pain medications to help relieve pain. Massaging and/or applying heat or cold to the affected area, exercise, relaxation, visualization, hypnosis and other forms of distraction are some of the non-drug therapies used to augment the pain relief provided by drugs.

Identifying the Cause of Pain

In order to properly treat the pain, its underlying cause must be identified. Most pain has a physical cause that can either be seen by a physician or deduced based on the patient's history and description of the pain.

Sometimes a physical cause for the pain is not readily apparent. This does not mean that the pain is any less real or less urgent to relieve. Pain experts agree that when a patient says that he or she is experiencing pain, it's important to take that complaint seriously and attempt to relieve it, whether or not a physical cause is apparent.

Patients can help their physician properly identify the cause of pain by being very specific about the type, intensity, location and frequency of the pain. Is it mild, moderate or severe? Is it sharp or a dull ache? Does it throb? Is there a burning or itching sensation associated with it? Is it constant or intermittent? If it's intermittent, how often does it occur? When did it begin? Do certain actions or motions such as laying down or taking a deep breath make the pain better or worse? The more information the physician has about the pain, the more likely he or she will be able to identify and treat both the cause and symptoms properly.

It's best to notify your physician or nurse about pain as soon as it begins. Pain is easier to relieve in the early stages than after it's become severe. There's no advantage in trying to "tough out" the pain, and no reason to be embarrassed about asking for pain relief. In fact, refusing pain medication may be harmful. Patients who are gripped by pain are often less willing or able to do important things that are necessary for recovery such as eating or exercising.

Choosing a Drug and Dosage

The drug chosen to alleviate the pain will depend on the physical cause of the pain. Opioids are effective in controlling pain associated with tissue damage (eg. mouth sores or skin rashes) but may be less effective in controlling pain associated with nerve irritation, such as that sometimes caused by cyclosporine. Non-opioids, anti-depressants, and anti-convulsants may be helpful in controlling pain caused by nerve damage, but must be used with care in the BMT setting due to possible side effects. The dosage of medication required to relieve pain varies considerably among patients and according to the type of drug being administered. There is nothing wrong with the patient who requires more medication to relieve pain. Each person's body reacts differently to pain medication and a good pain control program will take those individual differences into account.

Some drugs are very slow acting but produce long-term pain relief. Others quickly reduce pain but are effective only for a short period of time. A combination of drugs is sometimes used to provide patients with the best relief.

Maintaining Relief

The appropriate dosage of drugs may increase as the level of pain increases. Some drugs, such as opioids, provide additional pain relief whenever the dosage is increased; others do not. Increasing the dosage of drugs may increase the risk of drug-related side effects. These side effects are usually minor and reversible but patients should not increase the dosage or frequency of pain medications without first checking with their doctor.

While in the hospital, nurses usually administer pain medications according to a schedule tailored to the patient's needs or on an "as needed" basis. Alternatively, patients may be linked to a "Patient Controlled Analgesia" machine or PCA, and permitted to administer their own doses of pain medication (up to a safe maximum limit) as needed. The PCA can be adjusted so that the medication is automatically dispensed during periods when a patient is sleeping and unable to dispense his or her own pain drugs. A 1991 study at the Fred Hutchinson Cancer Research Center found that patients with mouth sores who administered their own pain medication through a PCA machine tended to report less pain, used pain medications over a shorter period of time and required less drugs in total than patients who received pain medications administered by a nurse or physician.

BMT patients who continue to require pain medications after leaving the hospital often find that a system of reminders helps ensure that pain medications are taken regularly. Placing each day's dosage of drugs in a separate container (most pharmacies sell weekly compartmentalized containers for this purpose), keeping a chart handy of when each drug is to be taken and making a note after each drug is taken helps ensure that medications are taken on schedule.

Pain Experienced by BMT Patients

Each person's BMT experience is unique. Some experience only mild discomfort and need only small amounts of pain medication. Others experience more significant pain and require more medication to control it.

Painful mouth sores are a frequent side effect of BMT. The high dose chemotherapy and/or radiation administered prior to the transplant breaks down the delicate lining of the mouth and throat, causing pain, particularly when swallowing. Pain medications such as lidocaine or dyclone can be used like a mouth wash to control the discomfort. In many cases, an opioid such as morphine is administered through the patient's Hickman-type catheter to provide additional pain relief.

Skin sores can also result from the high dose chemotherapy and/or radiation administered to patients prior to transplant. Opioids are typically used to control the pain. If a burning sensation accompanies the pain, additional pain medications such as clonidine may be applied directly to the skin, or ice may be applied to the affected area.

Some of the medical procedures performed on BMT patients can cause temporary discomfort. Bone marrow aspirates are a good example. In this procedure, a needle is inserted into the rear hip bone to withdraw a tiny sample of bone marrow. While the area around the bone can be numbed, it's difficult to numb the bone itself. An uncomfortable scraping sensation and pressure are common with bone marrow aspirates. The actual pain typically lasts no more than a minute, but the anticipation of the pain makes the experience extremely unpleasant.

Anxiety about the procedure can be reduced by "pre-medicating" patients with small dosages of Versed or Ativan to relax them. Don't be embarrassed to ask for pre-medication to ease your anxiety if you're fearful about a bone marrow aspirate. (Note: Bone marrow aspirates are different from bone marrow harvests. In bone marrow harvests, the patient usually undergoes general anesthesia prior to the procedure and thus feels no pain.)

Children, in particular, may find some medical procedures during their BMT distressing. For some, pre-medication helps relieve their anxiety. For others, however, additional sedation is required. A number of BMT centers briefly sedate patients (both children and adults) with powerful, short-term general anesthetics such as ketamine or propofol in addition to local anesthetics so that the patient is not fully conscious while the procedure is taking place. This technique (called conscious sedation) requires an anesthesiologist and more elaborate preparation such as withholding food and drink for 6-7 hours prior to the procedure. If you are anxious about painful medical procedures, inquire about the availability of this technique.

Other medical procedures that may cause BMT patients discomfort include lumbar punctures (spinal taps), placement of Hickman-type catheters, insertion of urinary catheters and lung biopsies. Opioids are usually effective in relieving pain associated with these procedures.

Infections are common in BMT patients following the transplant and may cause mild, moderate or severe pain. Opioids are effective in controlling infection-related pain in most instances. If infection develops after discharge from the hospital, it may be necessary to readmit the patient for several days to quickly bring the infection and pain under control.

Patients who use colony stimulating factors (CSFs) to speed the recovery of their bone marrow may experience mild to moderate bone pain, muscle pain and/or headaches. In most cases, the pain can be controlled with Tylenol and usually ends when the patient stops using CSFs. If the pain is severe, opioids may be used to relieve it.

Patients with graft-versus-host disease (GVHD)_a complication experienced by patients undergoing a transplant with donor marrow_often develop a skin rash that may be painful. Some also experience heartburn, stomach pain and/or a burning sensation when eating acidic foods. Opioids are useful in controlling GVHD pain. Benadryl or topical hydrocortisone cream may be used to control the itching sometimes associated with a GVHD skin rash. Bentyl or Lomotil are sometimes used to relieve cramping associated with GVHD of the gut.

GVHD may be acute (occurring during the first three months post-transplant) or chronic (occurring after the first three months post-transplant). Chronic GVHD may persist for several months or years and managing the discomfort can be trying for even the most persevering patient. If long term use of opioids is not effective, more invasive techniques such as injecting small quantities of opioids into the spinal canal may help. (BMT patients rarely require this type of pain relief.) Non-drug pain therapies may also help.

Clonidine and/or ice may be used to control the nerve pain that is sometimes caused by cyclosporine_the drug used to control GVHD.

Fears of Addiction

One of the biggest barriers to providing patients with adequate pain relief is the erroneous belief by much of the public (and some medical professionals as well) that taking pain medications will lead to drug addiction. Thus, some patients opt to put up with pain rather than ask for pain medication and some physicians inexperienced in modern pain control techniques prescribe inadequate dosages of drugs to relieve pain.

There is a difference between "drug addiction" and a "physical dependence" on drugs. Addiction is a psychological problem. Drug addicts "crave" drugs not because they have a physical need for them, but because they have a psychological desire for sensations produced by the drug (eg. mood elevation, drowsiness, hallucinogenic effects). With prolonged use, an addict becomes physically dependent on the drug as well as psychologically dependent. Eliminating an addict's physical dependence on drugs does not resolve the addict's psychological problem or "addiction."

Physical dependence simply means that a person will experience side effects such as nausea, cramping or restlessness for several days if the drug is discontinued. BMT patients who use opioids (narcotics) for a prolonged period of time may develop a temporary physical dependence on the drug. This dependence can be eliminated by slowly weaning the person off the drug, rather than discontinuing it all at once, so that the patient does not experience unpleasant side effects. A temporary physical dependence on a drug does not lead to drug addiction.

What if Pain Continues?

Since pain relief measures must be tailored to each individual's needs, it may take some time before the appropriate type and level of pain medication can be determined. You can help your doctor determine the effectiveness of pain medications by providing feedback on how well they are working. Has the medication provided any relief at all? Does the effectiveness of the drug wear off before you're scheduled to take the next dosage of the drug? If so, how long are you without pain relief? Are you experiencing any side effects such as drowsiness, nervousness, nausea, itching or constipation?

When you're given a prescription (or administered pain medication in the hospital), ask when you can expect the medication to take effect. While you're waiting for the medication to work, try to find a distraction from the pain. If the drug fails to relieve the pain when expected, notify your doctor or nurse. He or she will adjust the dosage or change your prescription until pain relief is achieved.

If you feel you are not receiving adequate pain relief while hospitalized for your BMT, ask your spouse or caregiver to raise this problem with the doctors and nurses. Spouses, parents and other caregivers can be very effective advocates for patient pain relief, particularly when a patient is too exhausted or embarrassed to seek help on his or her own.

After you are discharged from the hospital, don't hesitate to seek the help of a pain specialist if you feel your local physician is not taking your complaints of pain seriously or is unable to prescribe adequate pain medication. Most physicians have not received specialized training in pain control and some are more experienced than others in this rapidly evolving area of medicine. Many universities and large hospitals now have special pain control programs with experts in both drug and non-drug pain control techniques who may be able to help you. Phone a university-related medical center in your area, the American Cancer Society or Cancer Information Service (800-4-CANCER) for a referral to a trained cancer pain specialist in your area.

Non-Drug Pain Control Techniques

While most pain is caused by physical problems, the degree of suffering associated with the pain is closely linked to psychological, social and environmental pressures on the patient. In the next issue of BMT Newsletter, we'll explain how patients can help control their pain with non-drug techniques and enhance the effectiveness of pain medications.

Primer on Pain Medications