Pain is a problem affecting many people with cystic fibrosis (CF) and has a significant impact on quality of life and health outcomes.
Pain relief should be an important goal and will involve a multidisciplinary approach to assess and treat symptoms, in addition to medication, complimentary therapies and self-management strategies.
Over 70% of adults and 42% of children with CF reported some form of pain, many suffering with chronic pain for at least three months before reporting symptoms. Pain was associated with poor disease management, increased psychological symptoms, more pulmonary exacerbations, and lower health related quality of life.
Over the past 10 years studies have shown that pain assessment and treatment in CF is vital, as pain has been associated with survival. The assessment of pain should be undertaken as part of routine care in CF centres and good pain management should be a priority to enable effective treatments. Musculoskeletal pain is commonly reported to be a barrier to treatment adherence, particularly with airway clearance and exercise. No two people have identical pain perception so each person with CF will need a review to enable an individualised approach to their pain management.
Pain relief medication can play an important role for patients experiencing pain that is limiting their ability to complete their treatments. Timing of pain relief medications in relation to airway clearance or exercise needs to be considered to enable these treatments to get done.
Physiotherapists play a crucial role in assisting people with CF to manage pain. Management techniques may include manual therapy, electrical stimulation, heat or cold therapy, ultrasound, exercise, education, and modification of unhelpful behaviours. Preventative measures that address any contributing factors, such as posture, are important to address.
Joint abnormalities and postural changes start to develop in the early years and as patients age, these changes, and the associated pain, may affect their ability to do required treatments. In CF, an increase in the forward curvature of the upper spine (thoracic kyphosis) can occur as a result of the posture adopted for breathing and coughing. Postural education and incorporating stretches into everyday routines is important to prevent postural changes from occurring. Improving posture can have a positive impact on body image and self-esteem and also improve pain and lung disease. CF physiotherapists can suggest stretches and positioning for airway clearance and nebulisation to help address any posture and pain issues. They can also assess the need for referral to a specialist physiotherapist for extra interventions such as hands-on therapy and other pain management techniques.
Complementary therapies can be very helpful for managing pain when used in conjunction with medication and other pain relief strategies. These alternative or holistic therapies often claim to treat the whole person, rather than the symptom of the disease and can include homeopathy, naturopathy, meditation, yoga and acupuncture.
There have been some studies examining the benefits of complementary therapies in CF which have had positive results. Three studies that used biofeedback, music, and massage therapy to assist with physiotherapy found some effectiveness and a study published in 2016 found that yoga may reduce immediate anxiety and joint pain in patients with CF.
Complementary therapies can be used alongside conventional medicine in a belief they can ‘complement’ treatments, but should not replace medical treatment prescribed by the CF team. It is important to discuss any alternative treatments with the primary care team to ensure there are no contra-indications to treatment.
Self-management of chronic pain is an important strategy to empower people to manage their condition proactively and independently. Training in self-management for people with pain aims to provide education about why they have pain and suggest possible lifestyle modifications to optimise function and independence. One of the first steps when introducing pain self-management strategies involves the patient recognising that they need to take control and make some changes to their current way of doing things. This may involve discussions with the CF team to develop a collaborative plan for managing the more painful days.
Some other self-management strategies that people may find useful when dealing with pain are:
- setting small achievable goals for treatment with plenty of rests
- learning how to ease tension and relax using things like breathing, gardening, or reading
- gentle exercise
- improve sleep
- planning activities that are enjoyable and improve mood
Pain in CF is a complex issue that requires a multi-targeted approach to management, including medication and other therapies. Early identification and treatment is vital to ensure pain does not interfere with other CF treatments.
Article from RED Magazine, Edition 2, 2017.