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Pain - factsheet
Date of revision: April 2012
Updated with revised NICE guidelines - March 2014
This factsheet will be reviewed within three years
Pain in MS
Pain can be defined as "unpleasant sensory experiences"1. For people with MS this may encompass both 'painful' feelings and also altered sensations such as pins and needles, numbness, or crawling, burning feelings. Estimates vary as to how common these symptoms are2,3 with some reports suggesting that up to 80% of people with MS may experience pain at some stage4.
The management of pain in MS is not always easy and some types of pain will never go away entirely. In this case, the aim of treatment is to minimise the level of pain and to develop coping strategies so that the individual can carry out normal day-to-day living. Treatment options may include drugs, non-drug treatments such as physiotherapy or a combination of the two.
As well as the direct causes of pain, a number of factors can make pain feel worse for people with MS. These include heat, cold, poor sleep, fatigue, mobility problems, feelings of low self-esteem, loneliness or isolation, and depression or anxiety. Dealing with some of these other issues can help to improve pain levels.
It also needs to be remembered that people can experience pain for reasons other than their MS.
Different types of pain are managed in different ways, so a careful assessment of the factors that may be contributing to the symptom is necessary in order to find appropriate treatments.
--------------------------------------------------------------------------------
Describing pain
Pain is very subjective and is best described by the person experiencing it. No two people will experience pain in the same way.
Pain is often categorised in terms of how long it lasts. Acute pain is generally described as an intense, sharp, burning or shooting feeling. It is usually experienced intermittently, with very sudden onset and either improving or disappearing equally quickly.
Chronic pain is long-lasting or persistent pain. The intensity of chronic pain may fluctuate over a period of time without ever fully disappearing.
There are two broad types of pain that result from MS:
neuropathic or nerve pain is caused by damage to the nerves in the brain and spinal cord
nociceptive or musculoskeletal pain is caused by damage to muscles, tendons, ligaments and soft tissue
--------------------------------------------------------------------------------
Neuropathic (nerve) pain
Neuropathic pain is caused by disruption in how the nerves carry messages within the brain and spinal cord. In MS damage occurs to the myelin sheath, a layer of fatty protein that protects the nerves and aids transmission of messages. Nerve messages can be interrupted or delayed, interfering with the body's normal ability to function. Sometimes the brain interprets these disrupted messages as pain, even though there is no physical cause of pain.
The National Institute for Health and Care Excellence (NICE) has issued clinical guidelines for neuropathic pain. This indicates amitriptyline (Triptafen), duloxetine (Cymbalta), gabapentin or pregabalin (Lyrica) as first-line treatments. Treatment should be reviewed regularly and should the chosen drug not be effective, one of the others should be tried5. Treatment usually starts with low doses that are built up slowly.
These drugs affect the chemical transmission of pain signals resulting in a reduction of symptoms. They often cause side effects such as drowsiness, dizziness, nausea and blurred vision although these will eventually wear off.
The guidelines also suggest agreeing a treatment plan that takes into account the individual's concerns and expectations. Referral to a specialist pain service can be considered at any stage5.
Examples of neuropathic pain
Dysaesthesia or paraesthesia (altered sensation)
These are common symptoms in MS, but they are experienced differently from person to person. The pain can be described in a variety of ways including:
pins and needles
burning
tightness
numbness
prickling
dull ache
itching
crawling
nagging
Usually experienced in the extremities, these changes can occur anywhere in the body. These sensations can be uncomfortable and unsettling and may be painful and distressing.
Banding, sometimes called the 'MS hug'
This is a feeling of constriction, tightness or being squeezed around the chest.
Altered sensations are generally treated with one of the standard drugs, although symptoms such as numbness and loss of sensation may not be treated unless they are causing particular distress.
L'hermitte's sign
A sudden sensation resembling an electric shock, which passes down the back of the neck and into the spinal column and can radiate out to the fingers and toes. The pain is sharp but passes quickly so treatment is not usually considered.
Optic neuritis
A sharp, knifelike pain behind the eyes caused by inflammation of the optic nerve, sometimes also causing disruption to vision. Optic neuritis is a common early symptom of MS, though can occur at any time. It usually responds successfully to treatment with steroids.
Trigeminal neuralgia
An intense, severe stabbing and burning sensation down the side of the face that can ease to an ache or burn. Pain follows the path of the trigeminal nerve, which provides feeling in the side of the face and controls chewing and swallowing. It is thought that the pain, which normally only affects one side of the face at a time, is caused by damage where the nerve connects to the brain. The pain can be excruciating and can be set off by something as simple as eating, talking or smiling. It is usually sudden in onset and can reduce or disappear over a period of time. However it can become chronic.
Trigeminal neuralgia can be difficult to treat. First line treatment is with a standard drug for neuropathic pain. It is also useful to identify whether the pain has any triggers, for example eating ice cream, and avoiding them or reducing their likelihood. In extreme cases, surgery can be carried out to cut the nerve's connection to the brain, but this may leave the face numb.
--------------------------------------------------------------------------------
Musculoskeletal (nociceptive) pain
Musculoskeletal or nociceptive pain is the type of pain experienced when someone has an injury. It results from damage to muscles, tendons, ligaments and soft tissue.
Musculoskeletal pain is generally more successfully managed than neuropathic pain. Common pain relieving drugs such as paracetamol, ibuprofen or aspirin can be used.
The NICE Clinical Guideline for the management of multiple sclerosis state that specialist therapists should assess every person with MS who has musculoskeletal pain6. For instance, a physiotherapist could identify changes in posture and offer exercises to strengthen certain muscle groups to improve function and help to reduce pain. An occupational therapist could determine whether any new equipment might be required to help relieve pain, such as an appropriate walking aid or wheelchair, or equipment to make tasks in the home or workplace easier.
Examples of musculoskeletal pain
Pain in the hips and lower back
Many people with MS experience lower back pain. This can be caused by alterations in the way someone walks, possibly as a result of spasticity or weakness. This puts extra stress on the back or hips, leading to pain. Similarly, someone who spends much of the day sitting down, possibly due to mobility problems or fatigue may be prone to back pain.
Pain in the muscles, tendons or ligaments
This can occur if the limbs are stiff and kept in a fixed position for long periods of time. Muscles that aren't exercised can become stiffer and shorter, known as a contracture, restricting the range of movement possible. Ligament damage can also occur in MS, for instance if changes in how someone walks causes them to over extend their knee, leading to swelling and pain.
Spasms and spasticity can also cause pain in the soft tissues. When a muscle contracts, suddenly in the case of spasms or over a longer period of time in the case of spasticity, this can cause pain in the affected limb.
The NICE Clinical Guideline recommends the drugs baclofen or gabapentin as the first line of treatment for spasticity6. Other treatment options include tizanidine, diazepam, clonazepam or sodium dantrolene. The cannabis based drug Sativex is licensed for use as an add-on treatment for spasticity when people have shown inadequate response to other treatments or found their side effects intolerable.
A combined approach to treating spasticity, using both drug treatment and exercise, is often employed. Physiotherapy is used alongside medication to improve muscle function through a range of exercises and thus reduce painful sensations.
More information is available in our factsheet Spasticity and spasms
--------------------------------------------------------------------------------
Further treatment options
Pain clinic
If pain does not respond to treatment, it is possible to get a referral from a GP or neurologist to a specialist pain clinic. Services vary in the treatments offered and not all areas will have a specific pain clinic. Usually input is from a multidisciplinary team of doctors, nurses and therapists using a combination of drugs, therapy and coping strategies to help the person with MS minimise the effects of pain and to allow them to carry on with normal day-to-day living.
TENS
TENS (transcutaneous electrical nerve stimulation) is a machine that applies a small electrical current to the area of pain, producing a slight tingling, prickling sensation. The tingling sensations are transmitted along nerves more quickly than the pain sensations, reducing the effect of pain. It has also been suggested that TENS encourages the body to produce chemicals that have a pain relieving effect7,8.
TENS is included in the NICE Guideline as a treatment for musculoskeletal pain that doesn't respond to medication6.
Complementary therapies
There is limited scientific evidence to support the use of acupuncture9 and aromatherapy10 as treatments to alleviate pain, if only for short periods of time.
Some people with MS have reported benefits from the following therapies, possibly due to their relaxing effects. There may be others that are helpful:
cognitive behavioural therapy
distraction techniques
magnetic therapy
mindfulness
reiki
relaxation techniques
visualisation techniques
yoga
--------------------------------------------------------------------------------
Links and references
Pain organisations
The British Pain Society
The representative body for professionals involved in the management of pain in the UK.
0207 269 7840
info@britishpainsociety.org
Only registered and activated users can see links., Click Here To Register...
Pain Concern
A charity offering information and support for people who experience pain by people who experience pain. Provides a 'listening ear' helpline.
Helpline: 0300 123 0789
info@painconcern.org.uk
Only registered and activated users can see links., Click Here To Register...
References
IASP Task Force on Taxonomy. Merskey H, Bogduk N, editors.
Classification of chronic pain. 2nd ed.
Seattle;IASP Press:1994.
Ehde DM, et al.
The scope and nature of pain in persons with multiple sclerosis.
Multiple Sclerosis 2006;12(5):629-638.
abstract
Hirsh AT, et al.
Prevalence and impact of pain in multiple sclerosis: physical and psychologic contributors.
Archives of Physical Medicine and Rehabilitation 2009;90(4):646-651.
read online
Archibald CJ, et al.
Pain prevalence, severity and impact in a clinic sample of multiple sclerosis patients.
Pain 1994;58(1):89-93.
abstract
National Institute for Health and Care Excellence.
Neuropathic pain - pharmacological management: The pharmacological management of neuropathic pain in adults in non-specialist settings. NICE clinical guideline CG173.
London:NICE;2013.
read on the NICE website
National Institute for Clinical Excellence.
Understanding NICE guidance - information for people with multiple sclerosis, their families and carers, and the public.
London: NICE; 2003.
download
Warke K, at al.
Efficacy of transcutaneous electrical nerve stimulation (TENS) for chronic low-back pain in a multiple sclerosis population: a randomized, placebo-controlled clinical trial.
Clinical Journal of Pain 2006;22(9):812-819.
abstract
Sluka KA, Walsh D.
Transcutaneous electrical nerve stimulation: basic science mechanisms and clinical effectiveness.
Journal of Pain 2003;4:109-121.
abstract
Wang Y, et al.
A pilot study of the use of alternative medicine in multiple sclerosis patients with a special focus on acupuncture.
Neurology 1999;52:A550.
Howarth AL, Freshwater D.
Examining the benefits of aromatherapy massage as a pain management strategy for patients with multiple sclerosis.
Nursing Times Research 2004;9(2):120-128.
Pain - factsheet
Date of revision: April 2012
Updated with revised NICE guidelines - March 2014
This factsheet will be reviewed within three years
Pain in MS
Pain can be defined as "unpleasant sensory experiences"1. For people with MS this may encompass both 'painful' feelings and also altered sensations such as pins and needles, numbness, or crawling, burning feelings. Estimates vary as to how common these symptoms are2,3 with some reports suggesting that up to 80% of people with MS may experience pain at some stage4.
The management of pain in MS is not always easy and some types of pain will never go away entirely. In this case, the aim of treatment is to minimise the level of pain and to develop coping strategies so that the individual can carry out normal day-to-day living. Treatment options may include drugs, non-drug treatments such as physiotherapy or a combination of the two.
As well as the direct causes of pain, a number of factors can make pain feel worse for people with MS. These include heat, cold, poor sleep, fatigue, mobility problems, feelings of low self-esteem, loneliness or isolation, and depression or anxiety. Dealing with some of these other issues can help to improve pain levels.
It also needs to be remembered that people can experience pain for reasons other than their MS.
Different types of pain are managed in different ways, so a careful assessment of the factors that may be contributing to the symptom is necessary in order to find appropriate treatments.
--------------------------------------------------------------------------------
Describing pain
Pain is very subjective and is best described by the person experiencing it. No two people will experience pain in the same way.
Pain is often categorised in terms of how long it lasts. Acute pain is generally described as an intense, sharp, burning or shooting feeling. It is usually experienced intermittently, with very sudden onset and either improving or disappearing equally quickly.
Chronic pain is long-lasting or persistent pain. The intensity of chronic pain may fluctuate over a period of time without ever fully disappearing.
There are two broad types of pain that result from MS:
neuropathic or nerve pain is caused by damage to the nerves in the brain and spinal cord
nociceptive or musculoskeletal pain is caused by damage to muscles, tendons, ligaments and soft tissue
--------------------------------------------------------------------------------
Neuropathic (nerve) pain
Neuropathic pain is caused by disruption in how the nerves carry messages within the brain and spinal cord. In MS damage occurs to the myelin sheath, a layer of fatty protein that protects the nerves and aids transmission of messages. Nerve messages can be interrupted or delayed, interfering with the body's normal ability to function. Sometimes the brain interprets these disrupted messages as pain, even though there is no physical cause of pain.
The National Institute for Health and Care Excellence (NICE) has issued clinical guidelines for neuropathic pain. This indicates amitriptyline (Triptafen), duloxetine (Cymbalta), gabapentin or pregabalin (Lyrica) as first-line treatments. Treatment should be reviewed regularly and should the chosen drug not be effective, one of the others should be tried5. Treatment usually starts with low doses that are built up slowly.
These drugs affect the chemical transmission of pain signals resulting in a reduction of symptoms. They often cause side effects such as drowsiness, dizziness, nausea and blurred vision although these will eventually wear off.
The guidelines also suggest agreeing a treatment plan that takes into account the individual's concerns and expectations. Referral to a specialist pain service can be considered at any stage5.
Examples of neuropathic pain
Dysaesthesia or paraesthesia (altered sensation)
These are common symptoms in MS, but they are experienced differently from person to person. The pain can be described in a variety of ways including:
pins and needles
burning
tightness
numbness
prickling
dull ache
itching
crawling
nagging
Usually experienced in the extremities, these changes can occur anywhere in the body. These sensations can be uncomfortable and unsettling and may be painful and distressing.
Banding, sometimes called the 'MS hug'
This is a feeling of constriction, tightness or being squeezed around the chest.
Altered sensations are generally treated with one of the standard drugs, although symptoms such as numbness and loss of sensation may not be treated unless they are causing particular distress.
L'hermitte's sign
A sudden sensation resembling an electric shock, which passes down the back of the neck and into the spinal column and can radiate out to the fingers and toes. The pain is sharp but passes quickly so treatment is not usually considered.
Optic neuritis
A sharp, knifelike pain behind the eyes caused by inflammation of the optic nerve, sometimes also causing disruption to vision. Optic neuritis is a common early symptom of MS, though can occur at any time. It usually responds successfully to treatment with steroids.
Trigeminal neuralgia
An intense, severe stabbing and burning sensation down the side of the face that can ease to an ache or burn. Pain follows the path of the trigeminal nerve, which provides feeling in the side of the face and controls chewing and swallowing. It is thought that the pain, which normally only affects one side of the face at a time, is caused by damage where the nerve connects to the brain. The pain can be excruciating and can be set off by something as simple as eating, talking or smiling. It is usually sudden in onset and can reduce or disappear over a period of time. However it can become chronic.
Trigeminal neuralgia can be difficult to treat. First line treatment is with a standard drug for neuropathic pain. It is also useful to identify whether the pain has any triggers, for example eating ice cream, and avoiding them or reducing their likelihood. In extreme cases, surgery can be carried out to cut the nerve's connection to the brain, but this may leave the face numb.
--------------------------------------------------------------------------------
Musculoskeletal (nociceptive) pain
Musculoskeletal or nociceptive pain is the type of pain experienced when someone has an injury. It results from damage to muscles, tendons, ligaments and soft tissue.
Musculoskeletal pain is generally more successfully managed than neuropathic pain. Common pain relieving drugs such as paracetamol, ibuprofen or aspirin can be used.
The NICE Clinical Guideline for the management of multiple sclerosis state that specialist therapists should assess every person with MS who has musculoskeletal pain6. For instance, a physiotherapist could identify changes in posture and offer exercises to strengthen certain muscle groups to improve function and help to reduce pain. An occupational therapist could determine whether any new equipment might be required to help relieve pain, such as an appropriate walking aid or wheelchair, or equipment to make tasks in the home or workplace easier.
Examples of musculoskeletal pain
Pain in the hips and lower back
Many people with MS experience lower back pain. This can be caused by alterations in the way someone walks, possibly as a result of spasticity or weakness. This puts extra stress on the back or hips, leading to pain. Similarly, someone who spends much of the day sitting down, possibly due to mobility problems or fatigue may be prone to back pain.
Pain in the muscles, tendons or ligaments
This can occur if the limbs are stiff and kept in a fixed position for long periods of time. Muscles that aren't exercised can become stiffer and shorter, known as a contracture, restricting the range of movement possible. Ligament damage can also occur in MS, for instance if changes in how someone walks causes them to over extend their knee, leading to swelling and pain.
Spasms and spasticity can also cause pain in the soft tissues. When a muscle contracts, suddenly in the case of spasms or over a longer period of time in the case of spasticity, this can cause pain in the affected limb.
The NICE Clinical Guideline recommends the drugs baclofen or gabapentin as the first line of treatment for spasticity6. Other treatment options include tizanidine, diazepam, clonazepam or sodium dantrolene. The cannabis based drug Sativex is licensed for use as an add-on treatment for spasticity when people have shown inadequate response to other treatments or found their side effects intolerable.
A combined approach to treating spasticity, using both drug treatment and exercise, is often employed. Physiotherapy is used alongside medication to improve muscle function through a range of exercises and thus reduce painful sensations.
More information is available in our factsheet Spasticity and spasms
--------------------------------------------------------------------------------
Further treatment options
Pain clinic
If pain does not respond to treatment, it is possible to get a referral from a GP or neurologist to a specialist pain clinic. Services vary in the treatments offered and not all areas will have a specific pain clinic. Usually input is from a multidisciplinary team of doctors, nurses and therapists using a combination of drugs, therapy and coping strategies to help the person with MS minimise the effects of pain and to allow them to carry on with normal day-to-day living.
TENS
TENS (transcutaneous electrical nerve stimulation) is a machine that applies a small electrical current to the area of pain, producing a slight tingling, prickling sensation. The tingling sensations are transmitted along nerves more quickly than the pain sensations, reducing the effect of pain. It has also been suggested that TENS encourages the body to produce chemicals that have a pain relieving effect7,8.
TENS is included in the NICE Guideline as a treatment for musculoskeletal pain that doesn't respond to medication6.
Complementary therapies
There is limited scientific evidence to support the use of acupuncture9 and aromatherapy10 as treatments to alleviate pain, if only for short periods of time.
Some people with MS have reported benefits from the following therapies, possibly due to their relaxing effects. There may be others that are helpful:
cognitive behavioural therapy
distraction techniques
magnetic therapy
mindfulness
reiki
relaxation techniques
visualisation techniques
yoga
--------------------------------------------------------------------------------
Links and references
Pain organisations
The British Pain Society
The representative body for professionals involved in the management of pain in the UK.
0207 269 7840
info@britishpainsociety.org
Only registered and activated users can see links., Click Here To Register...
Pain Concern
A charity offering information and support for people who experience pain by people who experience pain. Provides a 'listening ear' helpline.
Helpline: 0300 123 0789
info@painconcern.org.uk
Only registered and activated users can see links., Click Here To Register...
References
IASP Task Force on Taxonomy. Merskey H, Bogduk N, editors.
Classification of chronic pain. 2nd ed.
Seattle;IASP Press:1994.
Ehde DM, et al.
The scope and nature of pain in persons with multiple sclerosis.
Multiple Sclerosis 2006;12(5):629-638.
abstract
Hirsh AT, et al.
Prevalence and impact of pain in multiple sclerosis: physical and psychologic contributors.
Archives of Physical Medicine and Rehabilitation 2009;90(4):646-651.
read online
Archibald CJ, et al.
Pain prevalence, severity and impact in a clinic sample of multiple sclerosis patients.
Pain 1994;58(1):89-93.
abstract
National Institute for Health and Care Excellence.
Neuropathic pain - pharmacological management: The pharmacological management of neuropathic pain in adults in non-specialist settings. NICE clinical guideline CG173.
London:NICE;2013.
read on the NICE website
National Institute for Clinical Excellence.
Understanding NICE guidance - information for people with multiple sclerosis, their families and carers, and the public.
London: NICE; 2003.
download
Warke K, at al.
Efficacy of transcutaneous electrical nerve stimulation (TENS) for chronic low-back pain in a multiple sclerosis population: a randomized, placebo-controlled clinical trial.
Clinical Journal of Pain 2006;22(9):812-819.
abstract
Sluka KA, Walsh D.
Transcutaneous electrical nerve stimulation: basic science mechanisms and clinical effectiveness.
Journal of Pain 2003;4:109-121.
abstract
Wang Y, et al.
A pilot study of the use of alternative medicine in multiple sclerosis patients with a special focus on acupuncture.
Neurology 1999;52:A550.
Howarth AL, Freshwater D.
Examining the benefits of aromatherapy massage as a pain management strategy for patients with multiple sclerosis.
Nursing Times Research 2004;9(2):120-128.
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