Unfortunately, pain is one of the most common characteristics of a bleeding episode. Fortunately, there are many approaches to help lessen pain. Nonetheless, pain can be a real cause of stress and fatigue for a child with a bleeding disorder, as well as for the caretaker. It’s not unusual for a caretaker to feel helpless. But with an organized strategy to limit and control pain, you and your child can gain confidence in managing a bleeding episode and the pain it causes.
In general, people with hemophilia experience two types of pain:
Acute pain: short-term pain, which usually results from bleeding into joints or muscles or is the aftereffect of surgeryChronic or persistent pain: long-term pain, which usually is due to arthritis that is caused by damage to a joint from repeated bleeding episodes
Often people may be reluctant to let others know that they are in pain. And, of course, babies and very young children may not have the verbal skills to communicate their discomfort. Here are some common pain signs that you can look for:
Mood changesReluctance to communicate and interact with othersIncreased irritabilityInability to concentrateDifficulty sleepingDecreased interest in favorite activitiesLack of appetite
If allowed to go untreated or inadequately treated, pain can lead to more serious consequences for patients, parents, and other caregivers. It can have an emotional, financial, academic, and spiritual impact on everyone involved. Pain can cause children to miss school, and in later years, it can affect educational and career choices. Pain can necessitate that a parent miss work caring for a child who suffers from acute or chronic pain. Both may miss out on family or social activities. It can lead the caregiver to feelings of helplessness and hopelessness, and can cause the patient and other caregivers to have these feelings as well.
Having your child on prophylaxis is the most effective approach to prevent painful joint bleeds.
Assessing a person’s level of pain can be difficult because pain is always subjective and is also often fraught with emotion, fear, and anxiety. There are no objective diagnostic tests to measure a person’s level of pain. Often health professionals will use other methods to help patients describe how much pain they have. One commonly used tool is a visual pain scale, of which there are several. In one type, patients are asked to rate their pain on a scale 1 to 10, with 1 being relatively no pain and 10 being the worst pain. For younger children, health professionals might use pictures of different faces from a relaxed face scaled up to a picture of a face of a person crying and have the child point at how he or she is or has felt.
Pain management must be an important part of a comprehensive treatment plan. Untreated pain can harm the healing process.
The primary goals of pain control are to relieve suffering and to maintain daily function. Pain can be managed through three main types of care: physical, pharmacologic (with medications), and psychological.
The physical management of pain can include:
Immobilization of a limb (using a splint, crutches, pillows, etc)R.I.C.E. (Rest, Ice, Compress, Elevate)Resting in a comfortable positionIceCompression bandagesElevation of the affected areaPhysical therapy can also be used to manage pain and return limbs to functionality after a bleed and reduce the risk of atrophy and loss of joint motion
The pharmacologic management of pain includes a range of options from over-the-counter products like acetaminophen (Tylenol®) to narcotics, which must be prescribed and monitored by a doctor. Because bleeding disorders can lead to chronic pain, doctors closely monitor the use of narcotics to reduce the risk of addiction.
The psychological management of pain can be categorized under complementary and alternative medicine (CAM) approaches. In general, these practices have been considered outside of mainstream medicine. This view is gradually changing as more research is performed and more scientific evidence of the effectiveness of some CAM methods is being proven.
As a caregiver, you can help your child—or any person with a bleeding disorder—take control of pain through a variety of techniques and activities. Even simple measures such as distraction, deep breathing, or guided imagery can be helpful. Helping your child learn ways to control the pain rather than being too afraid to do anything or believing that nothing can be done to lessen the pain will improve your child’s—and his or her caregiver’s—quality of life. Keeping your child active and involved, attending school and other activities, is strongly encouraged.
Complementary and alternative approaches include a wide range of techniques and practices. Some of these are well known; others are more obscure. These approaches can be divided into five main categories. (See Table Main Types of Complementary and Alternative Medicine below.)
Remember: check with your hemophilia health care provider before beginning any alternative therapy. This is especially important when considering taking any herbal remedy. Many of them can be toxic, can adversely interact with other medications, and some can directly affect the ability of the blood to clot.
Main Types of Complementary and Alternative MedicineTypeExamplesAlternative Medical SystemsAcupunctureAyurvedaHomeopathyNaturopathyTraditional Chinese medicineMind-Body InterventionsArt, music, or dance therapyBiofeedbackHumor therapyMeditationPatient support groupsPrayerBiologically Based MethodsNatural substances, such as herbs, foods, and vitaminsBody-Based MethodsChiropracticMassageOsteopathyReflexologyEnergy TherapiesQigongReikiTherapeutic touch
Work with your comprehensive care team on all aspects of pain management.
Drugs to Avoid
Some painkillers (called analgesics) can aggravate bleeding. These include acetylsalicylic acid (aspirin), or other nonsteroidal anti-inflammatory drugs (eg, ibuprofen). The over-the-counter analgesic acetaminophen (Tylenol®) (called paracetamol outside the United States) and the prescription narcotic codeine are safe alternative analgesics.
As with any herbal supplement or remedy, the influence of recreational and illicit drugs on a bleeding disorder and its treatment is largely unknown. They could be harmful and should be avoided.
By Sanjeev Kumar Sinha.
Hemophilia Chapter, Patna. India