09 Pain

Defining and Describing MS Pain

Pain is one of the most common “invisible” symptoms of multiple sclerosis (MS), affecting approximately two-thirds of people with MS over the course of their lives, and approximately half of people with MS at any given time. Despite the high prevalence of pain in MS, less than one-third of patients report receiving treatment to specifically address their pain. Routine assessment and comprehensive treatment of pain is essential for promoting function and quality of life among people with MS.

Pain in MS can be classified in multiple ways, based on type, duration, and severity. Types of pain include musculoskeletal pain – which involves the bones, muscles, ligaments, and tendons – and neuropathic pain – which involves the nerves. Neuropathic pain can be extremely painful and also interfere significantly with the ability to sense temperature, touch, and pressure. Pain duration can be acute (short-term) or chronic (6 months or longer). Pain that lasts for several months can lead to disability. Pain intensity is often rated as mild, moderate or severe, varies considerably between individuals, and can fluctuate over time.       

Given the wide range of pain experiences, and the different treatments and strategies available for managing different types of pain, it is helpful for people with MS and their providers to discuss pain using descriptive terms. For example, terms such as “dull,” “aching,” “itching,” “burning,” “electric shocks,” “stabbing,” “tightening,” and “pulling,” are all different ways of describing painful sensations that may occur with MS, and can help determine the most appropriate course of treatment.

Pain Intensity vs. Pain Interference

Keeping track of pain intensity and pain interference is useful for identifying the types of situations and activities that can improve or worsen pain. Pain intensity can be rated on a scale of 0 (no pain) to 10 (worst pain imaginable) and pain interference can be rated on a scale of 0 (doesn’t interfere with functioning at all) to 10 (completely interferes with functioning). The distinction between pain intensity and pain interference is important because some treatments – especially non-pharmacological approaches such as rehabilitation therapies and psychological interventions – are effective for reducing pain interference (i.e., improvements in daily functioning), even if the intensity of the pain does not significantly change.

Pain can interfere with daily functioning in a number of ways and can lead to additional problems such as loss of hobbies/enjoyable activities, social isolation, difficulty falling or staying asleep, and mood changes (e.g., new or worsening depression and/or anxiety). Many people with MS also report that their pain interferes with their concentration and memory; however, a recent study showed no significant relationship between pain intensity and performance on tests of memory and attention. These results suggest that although chronic pain might not directly cause problems with attention or memory, it can lead to depression, which is known to affect how people perceive themselves and their abilities. Thus, early diagnosis and effective pain management strategies have important implications for physical, cognitive, and emotional functioning in MS.

The first step to getting the help you need to manage your pain and function comfortably in your daily life is to advocate for yourself with your healthcare team. Put it on your priority list of questions and concerns, describe the type and intensity of pain you are experiencing, and continue to report your pain symptoms until they have been fully addressed. The goal is for the intensity of the pain to be significantly reduced or eliminated, if possible, and for the interference factor to be reduced or eliminated as well.