Pain in people with HIV

Pain is experienced through a complex set of interactions between parts of the body where pain is located,  the central nervous system in the spine; and the brain. These interactions occur via signals that travel back and forth between these parts of the body to make a person aware of pain, its location and its intensity.

Types and levels of pain vary by individual and the respective stage of HIV infection.  Almost all people in very advanced stages of infection experience pain.

 The various types of pain include:
- Neuropathic pain: Pain that attacks the nervous system is very common, and felt by around 30 percent of people with AIDS. It particularly affects the feet, hands and face, and has a tingling, burning or numbing effect.
- Headaches: These vary in intensity and can result from a wide range of factors including muscle tension, stress, sinusitis, migraine, and infection of the nervous system.
- Gastrointestinal pain: This affects all areas of the digestive system including the throat, stomach and intestines. Mouth ulcers and cold sores also affect the lips which can make eating difficult.
- Chest pain: This can be caused by opportunistic infections such as tuberculosis and bacterial pneumonia.

Aside from creating discomfort and distress, pain can also be a major hindrance to living a productive, fulfilled life. People with HIV who experience pain may not be able to earn a living, care for their families, or take part in social activities to the extent they would were they not in pain. Friends and family too may have to divert time from other activities to care for their loved-one in pain. Pain and its effect on life can also lead to emotional problems such as depression and anxiety.

Pain relief should be seen as a vital component of HIV treatment itself. If painful side effects of antiretroviral drugs can be averted through effective pain control, people will be more inclined to adhere to their treatment, and will be able to stop the replication of HIV far more effectively. Additionally, a USA-based study found that people living with HIV who experienced pain were 50 percent less likely to attend their medical appointments. Assessment of pain should be carried out before and during the treatment of pain in order to effectively control the pain and amend the treatment, if necessary. The various assessments include physical checks that may identify a particular symptom as the cause of the pain; having the patient describe how and when pain is at its worst or best; and examining the patient’s medical and psychosocial history and background, including a history of substance use and abuse, that may influence subsequent treatment.

No one besides the individual can more accurately say how much pain someone is in and therefore the patient should be at the center of pain assessment:

When being assessed, patients can be asked to describe their pain intensity on a variety of scales including a 0-10 range with “0” being “No pain” and “10” being “Worst possible pain”; a descriptive scale with, for example, the patient describing their pain as “moderate” or “severe”; or simply on a line, with pain increasing further along the scale. Children or speakers of other languages may convey their pain by selecting from a series of illustrations depicting different levels of happiness or sadness.

The Brief Pain Inventory is widely used to assess pain. It asks patients not only to explain the location and intensity of pain, but also to describe how it interferes in seven areas of life including work, walking, mood and relations with others.