Me, My MS and I

The Usual Suspects – Pain

As found in the study by Archibald CJ, et al. Pain, prevalence, severity and impact in a clinic sample of multiple sclerosis patients. Pain 1994; 58 (1): 89 – 93, “more than half of people with multiple sclerosis will experience pain at some stage.”

Pain only shows in tension on the face, occasional winces, snapping at people and difficulty performing tasks or moving. To look at me, you wouldn’t know I suffer from chronic pain. Many people with MS suffer from pain; whether it be neuropathic (caused by demyelination of the nerves) or musculoskeletal, and suffer in silence. It’s debilitating and tiring, and can disturb sleep; all of which can make life difficult. A proportion of those who suffer chronic pain also describe it as demoralising.

Severity and frequency of pain differ from mild to acute and from short term to chronic, but pain has the same effect regardless – it saps energy, reduces concentration and can be distressing and affect mood. Snapping or being short with family and friends, and being quiet are outward signs, but with no visible reason behind this behaviour, it can often cause difficulty in relationships unless it’s known by others that the cause is pain.

MS related pain can be split into two categories: neuropathic pain, and musculoskeletal (or nociceptive) pain.

Neuropathic Pain

Also known as nerve pain. It is thought that this arises as a direct result of the damage to the covering of nerves interfering with the normal transition of information to the brain. However, the origin of most nerve pain is not fully understood. 1

Nociceptive Pain

Nociceptors are pain receptors found throughout the body that respond to injury and information. They send messages to the brain that are perceived as pain, usually in the joints or muscles. This type of pain is not directly related to MS, but may be exacerbated by it; for example, musculoskeletal pain can arise as the result of spasms or abnormal pressure on the muscles and joints due to changes in posture, typically in the back or hips. 2

Commonly we think of pain as a headache, or as the result of an injury. However, many MS symptoms are classified as pain. “Dysaesthesia or paraesthesia, is a medical term for uncomfortable, abnormal sensations, such as pins and needles, burning or crawling feelings, numbness or tightness for which there is no external cause. Although these are often experienced as affecting the skin, the sensation is is caused by interrupted nerve messages in the central nervous system. These feelings are classed as pain symptoms.” 3 Dysaesthesia covers a wide range of MS symptoms, including: the MS ‘hug’ or ‘band’; tingling; loss of sensation (numbness); pins and needles; changes in sensation on the skin; pain (both chronic and sudden, acute); skin feeling wet in patches; and burning sensation. This list is not exhaustive, but gives an idea of the array of symptoms classified as pain.

Neuropathic Pain

Myelin covers the the nerves of the central nervous system and allows for the smooth and speedy communication of messages between the brain and body.

Image courtesy of the MS Society Website

MS is classed as an autoimmune disorder, and as such, the body’s immune system ‘attacks’ the body as it confuses healthy tissue within the body (in this case Myelin) for an infection or bacteria. Myelin is attacked by MS and this damages the covering of the nerves, stripping the myelin and affecting the flow of messages throughout the central nervous system. Left behind by this damage to the myelin and nerve fibres are plaques, or lesions, from which multiple sclerosis derives its name – ‘many plaques’. The damage to the myelin can result in miscommunication of messages between brain and body, or cut them off completely, causing the symptoms of MS, including neuropathic pain.

In addition to the loss of and damage to myelin, the actual nerve fibres themselves can also be damaged. This damage to nerves is what causes the accumulation and progression of disability over a longer period of time.


Image courtesy of MS Society Website

Nociceptive Pain

Muscle spasms, spasticity and stiffness associated with MS can also cause pain. I’ve written a separate blog post on these symptoms as they’re a large part of life for many people with MS and deserve a full post. I’ll post it at a later date. “20% of people with MS will be affected by muscle spasms, stiffness and spasticity at some point.” National Institute for Clinical Excellence (NICE) Clinical Guideline 8. Multiple Sclerosis: management of multiple sclerosis in primary and secondary care. London, NICE.

Pain is a very individual symptom, and subjective: each person with MS will experience pain differently. It is also incredibly difficult to explain the sensations experienced and what form the pain felt adopts. Many people  with MS find it difficult and frustrating to put the symptoms into words to explain to others what they are experiencing. This requires an amount of understanding on the part of friends, family and healthcare teams.

Contributing Factors

There are many factors which contribute towards increased pain levels in MS, including: heat; tiredness; infection (as it increases immune system activity and raises temperature); illness (increases temperature and immune system activity); and stress and emotional stress can also cause increased pain levels.

Pain management in MS is a wide and complex topic, so a separate pain management blog post will follow.


Pain InformationMSRC:


MSRC: Spasticity:

MS Society: Pain and Sensory Symptoms:

MS Society: Muscle Spasms and Stiffness:

MS Trust: Pain:

MS Trust: Spasticity and Spasms:

Pain Concern:

A charity offering information and support for people who experience pain by people who experience pain. Provides a ‘listening ear’ helpline: 01620 822572

MS Society: Free Publications:

MS Trust: Tips for Living With MS:

Open Door – A free quarterly newsletter from MS Trust:


1  – 3: MS Trust

Archibald CJ, et al. Pain, prevalence, severity and impact in a clinic sample of multiple sclerosis patients. Pain 1994; 58 (1): 89 – 93

National Institute for Clinical Excellence (NICE) Clinical Guideline 8. Multiple Sclerosis: management of multiple sclerosis in primary and secondary care. London, NICE.

MS Society

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