- People with MS experience pain more frequently than the general population.
- Researchers analysed data from 1,678 participants from the Australian MS Longitudinal Study (AMSLS) who answered survey questions about pain.
- Different types of pain are experienced in different proportions and severity and also differ by MS type.
What do we know about pain in MS so far?
People with MS experience pain more frequently than the general population. As many as nine out of 10 people with MS experience pain, compared with up to only half of the general population.
In an earlier study of Australian MS Longitudinal Study (AMSLS) participants, pain was the MS symptom that had the greatest impact on quality of life for people with MS, second only to depression. Previous research on pain in MS focused on overall severity. But people with MS experience different types of pain, including:
- Dysaesthetic extremity pain: a burning, tingling or stabbing pain felt in the legs, feet or arms.
- Painful tonic spasms: a form of muscle cramp causing severe, sudden, brief and intense pain.
- Spasticity-associated pain: spasticity is a symptom that causes your muscles to feel stiff, heavy and difficult to move. It is often associated with feelings of aching, pulling and cramping.
- Allodynia: high sensitivity to touch, where intense pain is caused by something that doesn’t usually cause pain.
- Lhermitte’s phenomenon: shock-like feelings that moves down the trunk or limbs when bending the neck forwards.
- Trigeminal neuralgia: a condition that causes intense pain on one side of the face.
However, very little research has looked at different types of pain in MS.
“I’ve never had a day without pain. Because I have so much pain and I get the spasms and I get tingling and all that, and I just get it through my whole body. I would love to have a day without pain.”
(Study participant)
What did the researchers do?
MS Australia-supported researchers analysed survey data from 1,678 AMSLS participants about the type of pain they experienced with MS and how often it occurred. Respondents were asked how long they had experienced each type of pain, how predictable it was and to rate its severity. They also rated how severe their pain was overall and how it affected their daily function.
A smaller group of these survey respondents were interviewed in focus groups to provide more detailed information about their experiences with different types of pain.
What did the researchers find?
Published in the journal Multiple Sclerosis and Related Disorders, the researchers found about half of the respondents (53.6%) experienced pain. About a third of these (33.7%) experienced moderate to severe pain and about a sixth (16.8%) said pain had a high impact on their daily function.
In focus groups, participants said pain was part of their everyday lives and that they believed their pain was due to MS. They did not use official names for different pain types but instead described what the pain felt like, such as “tingling” or “pins and needles”. However, allodynia and dysaesthetic extremity pain were commonly discussed pain types.
The most common types of pain, their predictability and severity
Dysaesthetic extremity pain was the most common, reported by just under half of survey respondents. This was followed by spasticity-associated pain, painful tonic spasms and headache.
Respondents who had 5-10 types of pain had worse daily functioning (interfered more with daily life activities, measured by the Brief Pain Inventory) than those who experienced only 1-2 or 3-4 types of pain. For most pain types, more than seven out of 10 respondents believed their pain was linked to their MS. Just over two-thirds said they had experienced headache and Lhermitte’s phenomenon for more than five years, making them the most-reported pain types at this time point.
Some pain types were mainly experienced as continuous (ongoing) while others were more intermittent (on-off) and not predictable. Musculoskeletal pain, dysaesthetic extremity pain and spasticity-associated pain were mainly experienced as continuous and were the pain types that were most severe. Trigeminal neuralgia, optic neuritis pain, migraine, headache, painful tonic spasms, Lhermitte’s phenomenon and allodynia were more intermittent, were not predictable and were the pain types that were less severe.
How does pain differ by MS type?
Regular pain, dysaesthetic extremity pain and spasticity-associated pain were more frequent in progressive MS than relapsing MS.
People with progressive MS found dysaesthetic extremity pain, spasticity-associated pain, painful tonic spasms, allodynia and headache were present continuously, while people with relapsing MS found they presented intermittently. In contrast, migraine was more frequent in people with relapsing MS compared to progressive MS.
What does this mean for people with MS?
Around half of people with MS surveyed experience pain that was mostly attributed to MS and many found it greatly impacts their daily functioning.
This detailed analysis of the different types of pain in MS shows how important it is for healthcare professionals to understand types of pain, how they present, and their impact on daily life so they can help people manage their pain.
It is important to note that pain may or may not be because of MS, and pin-pointing the source of the pain may help to manage it more effectively. We recommend consulting a healthcare professional for tailored support for pain management in MS. This could include medication, self-care practices, allied or mental health support, GP, neurologist or pain specialist consultation and/or treatment of other conditions.
The findings also present avenues to develop resources for people living with MS, their carers and healthcare professionals to improve pain management. This includes resources to help people with MS describe the type of pain they are experiencing more effectively.
For more information about pain and managing pain in MS, please click here.
