It is important to ask boys/young men with DMD if pain is a problem so that it can be addressed and treated properly. Unfortunately, very little is currently known about pain in DMD. More research is needed. If your son is in pain you need to talk to your doctor and explain to them that this is a problem.
- For effective pain management, it is important to determine why there is pain so the doctors can provide appropriate interventions.
- As a lot of pain results from problems with posture and difficulty getting comfortable, interventions include provision of appropriate and individualised orthoses (braces), seating, bedding, and mobility as well as standard drug treatment approaches (e.g. muscle relaxants, anti-inflammatory medications). Interactions with other medications (e.g. steroids and nonsteroidal anti-inflammatory drugs [NSAIDs]) and associated side effects, especially those that might affect cardiac or respiratory function, should be considered.
- Rarely, orthopaedic intervention might be indicated for pain that cannot be managed in any other way but that might respond to surgery. Back pain, especially in people using steroids, means the doctors should check carefully for vertebral fractures, which respond well to bisphosphonate treatment.