Pain
multiple sclerosis (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:
- Nerve pain – caused by damage to nerves directly and can include numbness, tingling or burning sensations
- Musculoskeletal pain – caused by damage to muscles, tendons and ligaments, which is related to your MS symptoms. For example, you might get a backache from a change in your posture or the way you walk or as a result of spasms
The cause of pain and the type of pain experienced is different for everyone and will be unique to you.
Some types of nerve 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. Nerve and musculoskeletal pain may disrupt your sleep.
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.
According to a study, 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 MS
- Headaches: these are experienced by around 40% of people with MS and around 80% according to another study
- Back pain: this is experienced by about one in five people with MS
- Pain from muscle spasms: this is experienced by about 15% of people with MS. These can cause your arms and legs to move unexpectedly, producing a cramp-like pain
- Neck pain (known as Lhermitte’s sign): this is experienced by about 15% of people with MS
Pain is commonly experienced by people living with MS, but are ways to help minimize 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. It’s caused by the nerve damage itself, not damage to your skin or muscles. 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.
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 if these don’t work, your doctor may prescribe painkillers
- 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. 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
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.
What causes headaches in MS?
Headaches are a common symptom of MS, affecting around 40−80% of people living with MS, according to different studies. 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. They are severe headaches, which can last for several hours to several days. In addition to headaches, migraines might also cause sensitivity to light or sound or distorted vision.
Tension headaches
These are generally not severe and feel like a constant ache or band squeezing around the head.
Cluster headaches
These can appear suddenly and can feel like a severe throbbing pain in the side of the nose or in the eye.
How can I manage headaches?
Different treatments can be effective for different types of headache. You might find over-the-counter painkillers that may help. Your doctor might also prescribe treatments such as triptans. Triptans are a type of medication specially for treating migraines.
If you find that your headaches are significantly affecting your day-to-day life, talk to your healthcare team. They can help you find a treatment option to help with your headache.
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. 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. This type of pain is often triggered by chewing, drinking or brushing your teeth. 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.
How can I manage trigeminal neuralgia?
If you are feeling a lot of sharp pain in the face area, speak to your doctor, who may be able to help you.
Neck and back pain are fairly common in MS. According to different studies, it is estimated that anywhere between 10% and 45% of people living with MS get back pain. 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. You can also get pain as a result of muscle spasms.
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. 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. Read on to find out more about what 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. It affects about 15% of people living with MS and can be triggered by bending your neck forward. The pain usually comes on instantly, lasts no more than a few minutes, and goes as quickly as it appears.
The intensity of the pain is different for everybody – or some people, it can be very painful, and for others, it’s no more than feeling a little uncomfortable.
How can I manage Lhermitte’s sign?
Wearing a soft neck collar to limit how far your neck can bend forward can help you avoid getting Lhermitte’s sign. Physiotherapy can also help to improve your posture and reduce the likelihood of getting it. Talk to your healthcare team about the best options for you.
What are paresthesia?
People with MS can experience a type of pain in their extremities, known as paresthesia. These sensations have the same underlying cause as nerve pain and can affect your skin or other parts of your body. They affect around 12–28% of people living with MS at some point in their lives. The symptoms are quite wide-ranging, and can include sensations such as:
- Burning or aching
- 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 like they’re burning.
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.
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.
How can I manage feelings of paresthesia?
There are several ways to help keep paresthesias 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.
If the sensations are really bothering you, your doctor might be able to help.
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. Muscle pain can also be due to muscle weakness, spasticity (stiffness), spasms or balance problems caused by your MS. Musculoskeletal pain can often happen when you don’t move for some time, due to fatigue or walking difficulties.
MS back pain can also be due to the effects of MS on your posture, when sitting or walking.
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.
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.
Over-the-counter painkillers can also help. If these don’t keep your pain under control, your doctor might be able to prescribe other 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.
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 pain
- Talking therapies (cognitive behavioural therapy): 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 physically
- 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 people
- Heat or cool packs: these can help relieve muscle pain, but be aware that changes in temperature can trigger symptoms for some people
- 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 help
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.
NO ONE CHOOSES TO HAVE MS. BUT EVERYONE CAN CHOOSE HOW TO MANAGE IT.
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