People with neuromuscular conditions are no strangers to pain. Chronic pain is pain that lasts for more than three months in any part of the body, and is tied to negative symptoms such as fatigue, difficulties with sleep, and low mood. But even though this is a universal experience in the neuromuscular community, research on pain is lacking in some areas.

Miró et al. are a collection of researchers representing a number of universities across Spain and America, all tied to their respective departments of medicine. These researchers note in their paper ‘Chronic Pain in Neuromuscular Disease: Pain Site and Intensity Differentially Impacts Function’ that chronic pain is something which affects many people with neuromuscular conditions, yet isn’t explored in enough depth. While pain intensity is considered important for pain management and reduction, Miró et al. say that there’s less research about other important pain factors, including:

• Frequency (how often pain happens)
• Duration (how long pain happens for)
• Location (where the pain occurs)
• Quality (how the pain feels: sharp, stabbing, etc.)

Miró et al. point to other studies done in groups who also experience chronic pain, where research suggests that the type of pain will alter how a patient lives their life. Pain type also affects what kind of support and treatment each person needs. While the researchers stress that it’s difficult to know if these findings will be the same for people with neuromuscular conditions, they feel people should be assessed for pain type as well as intensity to help support quality of life. As of 2012 (when this paper was originally published) Miró et al were not aware of any significant attempts to study complicating factors in pain for people with neuromuscular conditions. This Research Unravelled was written in August of 2026, and as far as Pathfinders are aware, there has been little development in this area.

The researchers note that different neuromuscular conditions differ in terms of pain intensity and pain location. While often treated as the same by clinicians, the unique traits of neuromuscular conditions mean that pain is the result of different processes, not just one. This changes the type of pain experienced, and the type of treatment needed to ease that pain. In Miró et al’s investigation of this topic, they found that discussions about pain were almost all about people with musculoskeletal problems, which doesn’t cover the full scope of issues at play with neuromuscular conditions (as these involve both nerves and muscles). Because of this, Miró et al believe a comprehensive assessment of neuromuscular patients is needed, especially for identifying pain in different locations. 

The psychological complications of pain are also addressed in this article, with the researchers mentioning that pain can change how people function psychologically too. Miró et al. cited research which suggests patients who were more specific about where their pain occurs had better outcomes when engaging with cognitive behavioural therapy. Through all of the research they gathered, Miró et al have reached the conclusion that merely assessing pain by intensity isn’t enough to get the full story around a person’s medical difficulties. This means that treatment isn’t bespoke enough to support each patient, leaving gaps in care which could improve a person’s quality of life.

Through all of the research they gathered, Miró et al have reached the conclusion that merely assessing pain by intensity isn’t enough to get the full story around a person’s medical difficulties. When we aren’t sure of the specifics of a person’s pain, treatment can fall short, and so can a person’s quality of life. In this Research Unravelled series we often find gaps when it comes to considering the complexity of lived experience. Types of pain are another under-explored area, and we at Pathfinders agree with Miró et al. that further study into this topic would benefit the neuromuscular community.

Part of the work we do at Pathfinders involves demystifying research which affects the neuromuscular community. Do you have a research paper or topic you’d like to see covered? If so, get in contact with us at quinn@pathfindersalliance.org.uk.

Written by Quinn Clark

References:

Miró J, Gertz KJ, Carter GT, Jensen MP. Chronic pain in neuromuscular disease: pain site and intensity differentially impacts function. Phys Med Rehabil Clin N Am. 2012 Nov;23(4):895-902. doi: 10.1016/j.pmr.2012.08.008. Epub 2012 Oct 17. PMID: 23137744; PMCID: PMC3670094.