“It is difficult to convey how chronic pain totally invades and affects all aspects of your life. It is a constant inescapable entity. And it is difficult to make others understand. Everyone has endured pain, but not the kind of pain that you must live with 24 hours a day, 7 days a week, day and night.” - A 50-year-old man with hemophilia
People who live with hemophilia and other bleeding disorders are veterans in the acute care of bleeds. They are, however, strangers in the uncharted waters of effective pain management. For many years, pain has been seen as an unavoidable part of the condition—something to be suffered, often alone and in silence. In fact, pain has never been suffered alone. Family members are affected by the pain of a family member in a number of ways—emotionally, socially, academically, financially and spiritually—depending on the family situation of the person with the bleeding disorder.
Most health care providers and patients are used to having the four routine vital signs— blood pressure, pulse rate, temperature and respiratory rate—recorded at every assessment. Yet the most common reason for seeking medical care is pain. In 1995, the term, “fifth vital sign”, was coined, suggesting that pain must be measured and treated. Recognizing pain as the fifth vital sign puts assessment at the forefront, and allows the patient and family to create an alliance with the health care providers against suffering. Unlike its vital sign counterparts, there is no gadget to measure pain—it must be evaluated by asking questions and observing behaviour.
Pain associated with hemophilia and other bleeding disorders is usually of two types:
- Acute pain is usually due to bleeding into joints and muscles and, more rarely, the after-effects of surgery.
- Chronic pain is associated with joint degeneration or other long-term complications of bleeding disorders.
The aim of pain control within the first few hours of a bleeding episode is relief of suffering. Unrelieved pain can actually interfere with healing and turn acute pain into a chronic problem.
With chronic pain control there is the added aim of maintaining daily function. The final goal is a balance between the efficacy of pain relief, the side effects if any, and being as functional as possible.
People with pain, and their families, need to be aware that pain is a manageable condition. It doesn’t need to be suffered in silence. Discuss it with your clinic team and work out a plan that suits you.
The following CHS resources about managing pain have been developed for people with bleeding disorders:
Booklet: Pain: The Fifth Vital Sign
A comprehensive resource on managing pain for people with bleeding disorders.
Poster: Pain the 5th Vital Sign
A 17 “x 22” poster for display in hemophilia treatment centres.
Roadmap for Managing Pain – Passport to Well-being program
A booklet with practical suggestions of ways to manage the pain that is so common to people with bleeding disorders.
To obtain copies of the above resources please contact firstname.lastname@example.org.