Pain

MS can cause you pain. Let’s hit MS where it hurts.

There are several types of pain associated with MS and they generally fall into one of two categories – nerve pain and musculoskeletal pain:^1–4

• Nerve pain – caused by damage to nerves directly and can include numbness, tingling or burning sensations^1,2
• Musculoskeletal pain – caused by damage to muscles, tendons and ligaments, which is related to your MS symptoms.⁴ For example, you might get back ache from a change in your posture or the way you walk or as a result of spasms.⁴

You might also get pain as a side effect of your MS medication or due to other, unrelated health conditions.^2,5 The cause of pain and the type of pain experienced is different for everyone and will be unique to you.

Some types of MS pain can come about suddenly and only last a few seconds or minutes. You could also experience chronic pain that is better on some days and worse on others, but doesn’t go away completely.^1,2 Nerve and musculoskeletal pain is typically worse in the evening and at night and so may disrupt your sleep.^6–8

The pain is always there, but I’ve just got used to it now. It usually doesn’t come to mind unless I think about it. Some days are worse than others, but I don’t let it stop me from doing things, and nor should you.

Katie

Living with MS since 2016

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In people living with MS, the most common types of pain are:

• Nerve pain in the hands and feet - this is experienced by about a quarter of people with MS⁹
• Headaches - these are experienced by around 40-80% of people with MS^9,10
• Back pain - this is experienced by about one in five people with MS⁹
• Pain from muscle spasms - this is experienced by about 15% of people with MS⁹. These can cause your arms and legs to move unexpectedly, producing a cramp-like pain⁷
• Neck pain (known as Lhermitte’s sign) - this is experienced by about 15% of people with MS⁹

Pain is commonly experienced by people living with MS, but are ways to help minimise its impact on your life.

Read on to find out more about the different types of MS pain you might experience and the best ways to overcome it. Don’t let MS be more of a pain than it needs to be!

What causes nerve pain?

Nerve pain happens when MS damages the protective fatty coating of nerve cells called the myelin sheath. Between 50% and 90% of people living with MS are thought to get this kind of pain.¹¹ It’s caused by the nerve damage itself, not damage to your skin or muscles.¹¹ Nerve pain can cause a variety of different pain-like sensations – you might feel burning or stabbing pain, but you could also have strange sensations that you wouldn’t normally think of as pain, like intense tingling or pins and needles.¹¹

How can I manage nerve pain?

There are several things that you could try if you have nerve pain:

• Medications – you could try taking over-the-counter painkillers but these don’t always work for nerve pain, so your doctor may prescribe stronger painkillers or antidepressant or anticonvulsant medications.¹¹ Antidepressants are usually used to treat depression, as their name suggests, but they can also work to treat some types of nerve pain.¹¹ Anticonvulsants are often used to treat epilepsy, as they damp down nerve activity. This effect means they can also help treat nerve pain¹¹
• Topical medications – these are medications that you put on your skin, like creams and patches. You can get creams containing a type of anaesthetic to help numb the pain. Creams and patches that contain other types of painkillers or even capsaicin (the chemical that gives chilis their heat) can also help¹¹
• Heat or cold – putting something hot or cold on your skin, like an ice pack or a heat pad, soothes some types of nerve pain.¹² However,be aware that changes in temperature can trigger symptoms for some people
• Exercise – gentle exercise, like yoga, can help relieve some types of nerve pain, including back pain.^7,13

My sciatic nerve pain happens for a day or two but then it eases off. I use topical creams, ice packs and heat to help numb the pain. I also use over the counter painkillers to help take the edge off and reduce the swelling. I have also done yoga moves to help reduce the pressure, and stretches for sciatic pain and joint pain.

Katie

Living with MS since 2016

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What causes headaches in MS?

Headaches are a common symptom of MS, affecting around 40-80% of people living with MS.^9,10 There are many reasons why people with MS get more headaches than people who don’t have MS. They may be caused by treatment side effects or may be caused by MS itself, but the reasons behind this are not fully understood. People with MS can get different types of headaches, including:

Migraines

These are estimated to affect about a third of people living with MS.¹¹ They are usually quite severe headaches, which can last for several hours and up to 3 days. In addition to headaches, migraines might also cause sensitivity to light or sound or distorted vision.^11,14

Tension headaches

These are generally not severe and feel like a constant ache or band squeezing around the head.^11,14

Cluster headaches

These can appear suddenly and can feel like a severe throbbing pain in the side of the nose or in the eye.^11,14

How can I manage headaches?

Different treatments are effective for different types of headache. You might find that over-the-counter painkillers will work for normal tension headaches.¹³ They can work for migraines and cluster headaches too, but you may need something stronger in some cases. Your doctor might prescribe one of the following treatments:

• Antidepressants – while their main use is for depression, they can actually relieve migraines too¹⁵
• Triptans – a type of medication specially for treating migraines and cluster headaches¹⁶
• Steroids – these can be helpful for people who get headaches associated with other MS symptoms, like optic neuritis (eye pain)^7,14

If you find that your headaches are significantly affecting your day-to-day life, talk to your healthcare team. They can help you find the best treatment option to keep your headache under control and help reduce the impact it has on your life.

What is trigeminal neuralgia?

Face pain, also called trigeminal neuralgia, is an intense, sharp pain in the lower part of the face. It is a relatively uncommon MS symptom, affecting between 1% and 6% of people living with MS.^9,11 It’s caused by damage to the trigeminal nerve, a large nerve in the head that sends sensations of pain and touch from your face, teeth and mouth to your brain.^11,17 This type of pain is often triggered by chewing, drinking or brushing your teeth.¹⁷ The most intense pain is short-lived (from a few seconds to up to two minutes) but you may also experience a more chronic and persistent burning or aching in the face.¹⁷

How can I manage trigeminal neuralgia?

Anticonvulsant medications (normally used for epilepsy) can be used to treat this type of face pain. These damp down nerve activity and so can help to relieve nerve pain.¹⁸

When your optic nerve (the nerve in your eye) gets inflamed, it can hurt to move your eye and even cause blurred or double vision.² This is quite a common symptom, which is reported in around half of people living with MS. Optic neuritis usually only affects one eye at a time and goes away within a few days.^2,19

Read more about optic neuritis and other vision problems in our section on ‘Vision problems’ and find out more about ways to manage them.

Neck and back pain are fairly common in MS. It is estimated that anywhere between 10% and 45% of people living with MS get back or neck pain.^9,20,21 Sometimes this is an ache caused by the indirect effects of MS. For example, you could get back or neck pain from changes in your posture, damage to the discs in your back or being inactive for long periods because of fatigue.^2,4 You can also get pain as a result of muscle spasms.²

You might have particular types of back and neck pain, including the MS hug and Lhermitte’s sign (neck pain). MS hug is a tight, squeezing sensation around the chest, that can also cause back pain.^2,22 For more information about the MS hug, go to our ‘MS hug’ page.

Lhermitte’s sign is a specific type of neck pain that can affect people living with MS. Some people say that it feels a bit like an electric shock running down your neck.^21,23 Read on to find out more about Lhermitte’s sign is and how to treat it.

What is Lhermitte’s sign?

Lhermitte’s sign is sometimes described as a stabbing, electric-shock-like sensation that runs from your head, down your spine and sometimes into your arms or legs.^11,23 It affects between 15% and 40% of people living with MS and can be triggered by bending your neck forward, or coughing or sneezing.^4,7,9,21 The pain usually comes on instantly, lasts no more than a few minutes, and goes as quickly as it appears.⁷

The intensity of the pain is different for everybody – for some people, it can be very painful, and for others, it’s no more than feeling a little uncomfortable.^4,21

How can I manage Lhermitte’s sign?

Wearing a soft neck collar to limit how far your neck can bend forwards can help you avoid getting Lhermitte’s sign. Physiotherapy can also help to improve your posture and reduce the likelihood of getting it. Anticonvulsant medications (normally used for epilepsy) can be prescribed by your doctor to help with this type of neck pain, so talk to your healthcare team about the best treatment options for you.^4,6,23

What are altered sensations? People with MS can experience a range of strange or abnormal sensations (known as dysaesthesia).^11,23–26 These sensations have the same underlying cause as nerve pain and can affect your skin or other parts of your body. They affect around 40% of people living with MS at some point in their lives.^11,23–26 The symptoms are quite wide-ranging, and can include sensations such as:

• Burning or aching
• Tightening around the body, often known as the ‘MS Hug’
• Numbness and tingling
• Pins and needles
• Severe itchiness
• Buzzing
• Heightened sensitivity to touch

One specific type of altered sensation is called erythromelalgia. This is a type of pain that occurs in the hands or feet and can make them feel tight and swollen, or like they’re burning.²⁷

I have pain in my fingers (e.g. stinging and tingling in fingertips) and particularly when I’m working at my computer. In the beginning, it was in the whole hand but with time this has reduced to only affect my fingertips. This happened over 5 months on and off.

Katharina

Living with MS since 2018

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These sensations are generally just annoying or distracting. In some cases, they can feel more intense and so are also classed as a type of MS pain.^4,11

How can I manage feelings of altered sensations?

Altered sensations usually go away on their own.²⁶ If they do keep coming back, there are several ways to help keep them under control. If you notice anything that triggers these sensations, try to avoid it. For example, avoid going out when it is very hot if heat is a trigger, or wear looser clothing if touch is a trigger.²⁶

You could also make small changes to the way you do things, if you find that you get altered sensations when doing certain activities. For example, if you get strange sensations in your hands when writing, you could try using a different style of pen that is easier to hold. An occupational therapist can suggest small adjustments to help you with your daily activities.²⁶

If the sensations are really bothering you, your doctor might be able to prescribe medications that can help. Altered sensations have the same underlying cause as nerve pain, so the same treatments can be used for both.²⁶ Medications used to treat nerve pain and altered sensations include antidepressants (normally used to treat depression) and anticonvulsants (normally used to treat epilepsy).¹¹

If you are experiencing any new or strange sensations and these are affecting your life, speak to your healthcare team about your options to get them under control.

What is musculoskeletal pain?

Musculoskeletal pain is pain in your muscles and joints from the stresses and strains related to your MS. It can include joint pain, leg pain, arm pain and back pain.² Muscle pain can also be due to muscle weakness, spasticity (stiffness), spasms or balance problems caused by your MS.^2,4,21 Musculoskeletal pain can often happen when you don’t move for some time, due to fatigue or walking difficulties.^26,28

MS back pain can also be due to the effects of MS on your posture, when sitting or walking.⁴

How can I manage musculoskeletal pain?

There are a few things you can try to help manage musculoskeletal pain. First, exercise. Regular exercise may help reduce spasticity (stiffness) and soreness.²⁸

The best thing is exercise when it comes to pain. I don’t have much pain but when I do it is all over my body – nowhere in particular. I always do yoga and stretching as this really helps.

Grace

Living with MS since 2017

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Over-the-counter painkillers can also help. If these don’t keep your pain under control, your doctor might be able to prescribe stronger painkillers. Everybody’s pain is different and if you describe the type of pain you’re experiencing to your healthcare team, they can help you decide which painkillers will work best for you.⁷

In addition to painkillers and exercise, there are also other ways to help relieve your musculoskeletal pain:

• Massage – this can help relax tense muscles and soothe pain⁷
• Occupational therapy – this involves making small changes to everyday tasks, so you’re less likely to trigger pain by going about your daily life⁷
• Talking therapies – a trained professional can help change your thought process so that your pain affects you less. It’s based on the idea that your thoughts and feelings are connected to how you feel physically⁷
• Medical devices – a device called TENS (transcutaneous electrical nerve stimulation) can be placed on the skin to gently stimulate your nerves, which can reduce pain for some people⁷
• Heat or cool packs – these can help relieve muscle pain, but be aware that changes in temperature can trigger symptoms for some people²⁹
• Alternative therapies – these can include acupuncture, osteopathy or chiropractic treatments. There aren’t many studies to show exactly how effective these are, but some people find they can help⁷

I sometimes sleep with pillows to help elevate my hips to help make them more comfortable. I also use tablets and creams – general painkillers and some stronger ones from the neurologist if I really need them. I will also sometimes use heat packs (e.g., hot water bottles) and have a long, hot shower to help ease the pain.

Katie

Living with MS since 2016

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Talk to your healthcare team about what might be the best option for you, to help manage and relieve your pain.

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