Understanding Common Pain Associated with Sickle Cell Disease

Many patients with chronic diseases suffer pain as a component of the disease process. This is especially true for patients with sickle cell disease, with 90% of hospitalizations due to sickle pain.

Like other patients with lifelong illnesses, there are both physical and psychosocial factors involved in the management of pain control. When patients feel that a painful episode is starting, early treatment with analgesics (pain medication), warmth, rest, and drinking plenty of fluids can improve the process.

Patients with sickle cell disease may also have daily pain events that are not part of a vaso-occlusive crisis but are the result of long-term damage. These may need a different type of treatment than used with a vaso-occlusive crisis.

Syndromes of chronic pain associated with sickle cell disease include:

  • hip pain (avascular necrosis)
  • back pain (vertebral body collapse)
  • joint pain (arthritis)
  • lower leg pain (leg ulcers)


For older children and adults, a verbal pain scale is quite helpful during periods of pain. This involves asking the patient to rate the pain from 0 (no pain) to 10 (worst pain imaginable).

Keeping track of pain and relief have been helpful tools to use both at home and during hospitalizations. This involves marking the level of pain and percentage of pain relief achieved on a scale and identifying the location of the pain on a drawn body figure.

Many patients with sickle cell disease experience a great deal of anxiety over worrying about pain or improper pain management, which tends to make treatment more difficult.

It is important to realize that the pain experience is very different for each person. It is important to keep in mind that patients of all ages with sickle cell disease may remain active while in pain to deal with the problem.

For younger children, pain can be measured using pictures. The “FACES” and “OUCHER” scales use five pictures or drawings of children depicted in various stages from happy (no pain) to sobbing and upset (severe pain).