What kind of pain do people with MS have?

The sensation you feel with MS tends to be neuropathic, says Ryan Jones from MS-UK’s Helpline

When we hear the word pain, what often springs to mind is the kind of pain most people have experienced at some point – one that is a response to an injury or physical stimulus. Perhaps that’s hitting your thumb with a hammer, banging your head on a vehicle as you get in or out (ouch!), or even stepping on a piece of Lego. That kind of pain is acute pain, usually temporary, and will respond well to standard over-the-counter painkillers such as ibuprofen or paracetamol.

The kind of neuropathic pain that people with multiple sclerosis (MS) will experience is usually chronic pain, meaning that it lasts longer (although it is sometimes fluctuating) and is not caused by a physical stimuli or injury. Neuropathic pain is instead caused by damage to the nerves within the central nervous system.

MS sensations

It isn’t always helpful to think of some forms of neuropathic pain strictly as ‘pain’. Perhaps it is better to think of the symptom as an ‘altered sensation’ (sometimes called ‘dysesthesia’). The definition of dysesthesia is ‘an abnormal unpleasant sensation caused by damage to peripheral nerves’. Many people with MS will experience altered sensations, although they will impact on people in different ways. Some people will describe burning, itching, stinging, tingling, numbness, running (like water), shooting, tingling, electric shock-like feelings and more.

How can I assess my MS pain?

Sometimes the sensations can vary hugely in severity, too, ranging from a slightly bothersome background pain through to incredibly high-level intense and painful sensations. Health professionals will use a ‘Neuropathic Pain Scale’ when assessing you. This is a tool to help identify how severe your pain is, what type of sensation you are feeling, and how lasting the pain is. MS-UK have a pain diary that you can download and use that can help you assess, record and communicate your pain and altered sensations to your health professionals.

It may be that people will experience pain and numbness at the same time. This sounds odd because numbness describes a lack of sensation, whereas people are then also feeling pain at the same time. Even if this isn’t severe in its nature, as you can imagine, it can be quite difficult to live with and manage effectively.

Some nerve damage caused by MS can permanently alter people’s pain receptors, which can change the way that the brain processes pain feelings. This can alter how both acute and chronic pain is perceived and felt and can potentially cause allodynia. Allodynia is not common but is known to appear in nerve-related conditions. It is defined as when the person experiences pain that is excessive to the original stimulus. For example, a person may feel terrible pain from something light brushing against their shins. So, although we’ve said that altered sensations are not caused by a physical injury or external stimuli, neuropathic pain can certainly be triggered or provoked by something external.

Are there any treatments for MS pain?

In terms of treatments offered, your MS team will have strategies and treatments available and if the symptom is very difficult to live with, you may be referred to a specialist pain clinic.

Our pain Choices booklet content explains the range and variety of potential medical treatment options. We also make some suggestions for self-management, such as mindfulness and relaxation techniques, which have been shown to support people living with altered sensations. Our Choices content also contains quotes about lived experience of pain and MS from members of the MS community.