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MRC Prion Unit
From fundamental research to prevention and cure

Symptomatic pain management

Fortunately, pain is not a common feature of prion disease. However, in the early stages some patients do complain of peripheral type pains and aches. We can advise on symptomatic management once the local team has excluded any other possible source of the pain. We can provide an assurance to families that at the very end it is very unlikely that the patient can experience any pain due to the extensive damage caused by the prion disease. This is very often very comforting to them and useful for their local teams to know when providing end stage palliative medication. We advise on symptomatic management of myoclonus as these sudden jerky movements although not painful can appear so and are distressing for the family to watch.

Pain can be described as an unpleasant sensory and emotional experience arising from actual or potential tissue damage or described in terms of such damage (International Association for the Study of Pain); sudden or slow onset of any intensity from mild to severe with an anticipated or predictable end and a duration of less than 6 months.

Pain is a highly subjective state in which a variety of unpleasant sensations and a wide range of distressing factors may be experienced by the sufferer. Pain may be a symptom of injury or illness. Pain may also arise from emotional, psychological, cultural, or spiritual distress. Pain can be very difficult to explain, because it is unique to the individual; pain should be accepted as described by the sufferer. Pain assessment can be challenging, especially in patients with prion disease, where cognitive impairment and sensory-perceptual deficits are more common.

MRC Prion News