Explaining MS pain
We put your questions on pain to Sue Barnes, consultant nurse in pain management at Salford Royal Hospital. Here she talks about the different types of pain, drug treatments, self-management strategies and the mental effects of dealing with ongoing pain.
Types of pain
Pain covers a wide range of unpleasant physical sensations ranging from uncomfortable through to excruciating. Pain is fairly common in MS and can have a debilitating effect on everyday life.
There are two main types of pain in multiple sclerosis:
- nerve pain (neuropathic pain) which is caused by damage to the nerves in the brain and spinal cord. This includes altered sensations such as pins and needles, numbness, crawling or burning feelings. Examples of nerve pain include painful sensations in the side of the face, called trigeminal neuralgia, and a tight feeling, often around the chest, called the MS hug. Pain in the limbs is very common.
- musculoskeletal (nociceptive) pain which is caused by damage to muscles, tendons, ligaments and soft tissue, for example neck or back pain caused by changes in posture or sitting for very long periods.
People with MS may experience pain for other reasons including:
- as a side effect of medication eg headaches or injection site reactions to disease modifying treatments
- as a result of infections, such as a bladder infection
- from an accident or other health condition not related to MS
It is common to experience more than one type of pain.
Treating MS pain may include drugs or non-drug treatments, such as physiotherapy. You can also make changes to your everyday life so that pain has less impact. Effective pain management often means trying a range of approaches to see which ones work best for you and then adopting several at once to get the best overall effect.
What is pain?
No two people experience MS pain in the same way. Pain can be annoying, uncomfortable or excruciating. It can have a big impact on the person experiencing it yet seem completely invisible to those around them.
Pain is often described by how long it lasts.
- Acute pain begins suddenly and then improves or disappears. It may reappear from time to time. It is usually an intense, sharp, burning or shooting feeling.
- Chronic pain is longer lasting pain. It may feel better at some times than others but never goes away completely.
- Paroxysmal symptoms begin suddenly and only last for a few seconds or a few minutes at most. However, they may reappear a few times or many times a day in similar short bursts.
Pain in multiple sclerosis can feel very odd and seem difficult to explain.
Some of the more common descriptions include:
- An electric shock
- Trickling of water
- Pins and needles
You may have a totally different description for your pain. Nerve pain is particularly difficult to describe and people with MS sometimes worry that they won’t be believed or they “are going mad”. However, pain and unusual sensations are common in MS and treatment should be discussed with your health professionals in the same way as for any other symptom.
Describing your pain
You can help your health professionals by describing what you are experiencing as accurately as possible. In this way, they can understand what it feels like for you and any effect it is having on your everyday life.
Can you say:
- where you feel the pain eg only in your right arm, in your back, neck or fingertips
- when you feel the pain eg only at night or first thing in the morning
- whether some things make it worse eg when you get hot or after standing for a long time
- whether it feels sharp, dull, aching, burning, crawling, tight or like a pressure? Or is it some other feeling? Can you describe it even if it seems odd?
You might like to think about whether the feeling:
- comes in short or long lasting bursts or is there all the time
- started suddenly or increased bit by bit
- started at the same time as other new symptoms or when previous symptoms came back quite suddenly. This may suggest that your pain is part of a relapse.
- improves with pain killers or is relieved by changes you have made like applying heat or cold, relaxing or sitting in an upright chair
- gets worse when you do certain things.
- has happened before. When? Does it feel the same?
- is stopping you doing what you’d like to do. Give some examples such as it’s affecting your sleep, your work or your ability to sit down for long. It is good to say exactly what’s happening, for example, it takes you two hours to get to sleep or you can only sit still for 20 minutes at a time.
What causes pain?
Different types of pain have different causes.
Nerve pain (neuropathic pain) is the direct result of damage caused by MS to the covering of nerves in the brain and spinal cord. This damage interferes with the normal transmission of messages to the brain. The brain may interpret these disrupted messages as pain or as unusual feelings like numbness, pins and needles, crawling or burning. These feelings can occur anywhere in your body.
Although the pain feels like it is in a particular part of your body, such as your fingertips, there is no damage to the tissues in your hand. The only damage is in the nerves which report to your brain about your hand and this is what makes it seem like there is something wrong with your fingertips.
Examples of nerve pain are:
- trigeminal neuralgia, an intense painful sensation in the side of the face
- Lhermitte's sign, electric shock feelings in the neck and spine which are sometimes painful
- optic neuritis which can give a sharp, knife like pain behind the eyes and sometimes also causes difficulties with vision
- painful altered sensation, sometimes called dysaesthesia or paraesthesia, which can be described in a variety of ways including pins and needles, burning, numbness, prickling, itching and crawling
- the MS hug (banding or girdling). This is a feeling of chest pain, rib pain, tightness or being squeezed around the chest, although it can be around the hands, feet, legs or head.
Musculoskeletal pain (nociceptive pain) is caused by damage to muscles, tendons, ligaments or soft tissue. Musculoskeletal pain in MS feels like the pain from common injuries unrelated to MS, such as a sprain or pulled muscle.
Examples of musculoskeletal pain are:
- Hip and back pain caused by alterations in how you walk due to MS, possibly because of muscle stiffness (spasticity), weakness or problems with balance.
- Back pain due to sitting for long periods because of fatigue, walking difficulties or inability to stand for long.
- Muscle or joint pain due to changes in posture, spasms or muscle stiffness (spasticity)
How many people get pain?
Pain is a common symptom in multiple sclerosis and may occur at any point in the course of the condition or it may not occur at all. Some pain is caused by other symptoms, like spasticity, so these need treating to see if the pain can be eased.
Pain is difficult to define in MS so estimates vary as to how common these symptoms are, although some reports suggest that up to 80% of people with MS may experience pain at some stage. Some types of pain are common in the general population, including headaches and back pain, so it is important for health professionals to assess whether your pain is caused by your MS or for some other reason.
People with MS who smoke or are obese are twice as likely to report substantial pain, while moderate alcohol use and moderate exercise are associated with reduced reports of pain (1.4 times less likely). High levels of physical activity are associated with much lower reports of pain (1.7 times less likely). There is a strong and direct association between the 'healthiness' of your diet and reduced levels of pain.
In all these cases, it is not clear whether having pain makes you less likely to exercise or more likely to smoke, or whether being an inactive smoker causes more pain. However, a healthy lifestyle has been shown in many studies to reduce pain and other conditions like cardiovascular health and depression.
What can I do if I have pain?
You can manage your pain using drug treatments or other therapies, such as physiotherapy. Sometimes a combination of drugs or other treatments works best. Not all pain requires treatment, it depends on how much effect it is having on your life.
Managing pain may include learning coping strategies or making changes to everyday life so that pain has less impact on you. It is important to manage your pain as well as possible or you may lose sleep or become understandably irritable, angry or depressed.
In addition, other things that are happening in your life can make the pain feel better or worse so it is important to manage stress, get support and be as positive as possible about managing your pain. Like many MS symptoms, heat sensitivity or, sometimes, cold sensitivity can make pain worse. So can fatigue, lack of sleep, feeling isolated or depressed.
How can I manage pain myself?
There is plenty you can try to see if it helps. Everyone is different so you may need to try a range of different options before you find what works best for you. You may need to do several at once for the best effect. Some people prefer these approaches to drug treatments as there is less worry about side effects.
- Exercise Lack of activity and exercise, due to pain or other symptoms, can cause a gradual loss of strength and fitness. This is called deconditioning and can make your pain worse. Although it may not sound appealing, regular exercise can reverse deconditioning and help ease your pain. Exercise doesn’t have to be vigorous and could be gentle stretching exercises, t’ai chi, yoga or tailor made exercises suggested by your physiotherapist. It could be walking, aquatic exercise, going to a class or the gym. Many options can be done at home or as part of everyday life. The most important thing is to find something that you enjoy and which helps, rather than aggravates, your pain.
- Movement. It can be tempting to lie down or sit still for long periods if your pain is troubling you but it is better to move around regularly if you can. You could try small regular changes of position when seated or getting up and moving around or limiting time spent lying down. If it is difficult for you to move, a friend, partner or carer may be able to help with general stretching exercises. These small gentle movements may ease the painful feelings and may also help prevent pressure sores
- Posture Small changes to your posture can make a big difference to pain especially in the back and neck. Try placing a rolled-up towel in the small of your back to ensure that the spine is held in a good position. Regular upright standing against a work surface or in a standing frame can also help to improve posture and reduce muscle or ligament pain.
- Pacing This involves breaking large tasks into smaller chunks and taking regular, short breaks before you overdo it, for example, doing the washing up in short bursts or the cleaning spread out over several days. This can seem frustrating at first but can help you keep your pain to a minimum.
- Change your habits. It can be helpful to change the way that you usually do something. You might buy a more supportive mattress, do the ironing while sitting on a stool or order your groceries online so you don’t have to carry heavy shopping. Think carefully about why you do something the way that you do – it can be surprising how often it is just out of habit. Challenge yourself to think creatively so that you come up with new ways of doing things that are kinder on your body and ease your pain. Ask your family, friends and colleagues to work with you so that they understand how these changes will help you.
- Heat. Although heat sensitivity makes MS symptoms worse for many people, heat applied to the affected area can be helpful. You could try using a hot water bottle or heat pad but take care to check the temperature on an unaffected area first as the affected area may have reduced sensation. A hot bath can be good for pain as long as it doesn’t make your other symptoms worse.
- Cold. Some people find that applying ice or a cold pack helps. Ice should be wrapped in a tea towel not applied straight to the skin or you could try a pack of frozen peas.
- Complementary and alternative medicines (CAMs). There is some evidence that acupuncture can help MS pain. Aromatherapy can reduce muscle stiffness and promote relaxation and wellbeing.
- Distraction. It can be difficult to ignore painful or annoying symptoms and they can become the focus of your thoughts. Try to distract yourself by doing something you like or something that is important to you.
- Relaxation. You may become tense if pain is having an impact on how you feel and how much you can do. This tension may increase your pain and may also create other aches and pains which add to your discomfort. There are many relaxation techniques which can help you so it can be worth trying a range to see what suits you best. You could try breathing exercises, massage, mindfulness, meditation, hypnotherapy or gentle yoga stretching exercises. You might also like to try restful things that you enjoy like listening to music, meeting up for a coffee, gentle walking or sitting outdoors.
- Keeping a diary. Many people find that keeping a diary of their symptoms helps them to manage their MS better from day to day and also to review their MS with their health professionals. You might like to note in your diary when you experience pain, how it feels and what else is happening with your MS and in the rest of your life. This may help you to work out if there are factors that trigger or aggravate your pain so you can then make changes to manage your symptoms better. One way of grading pain is to describe it as a number between 0 and 10, where 0 = no pain and 10 = the worst pain imaginable. Keeping a daily diary of your pain levels may help you discover whether interventions are working to reduce the pain.
- Stay positive. Dealing with pain can be very draining so it is good to stay as positive as possible. In some areas, your MS nurse or GP may be able to refer you to a clinical psychologist for support in staying positive. This may include cognitive behavioural therapy (CBT) which encourages new ways of thinking and changes in behaviour. Seeing a psychologist or using psychological techniques to manage your pain doesn’t mean that the pain is “all in your head”. It can be one of the ways that helps you deal with your pain and manage it well. Your GP or MS team may be able to recommend online CBT programmes. Organisations that support people with pain (see below) have helplines, magazines and self-management toolkits to support you.
- Share your thoughts. Pain is often one of the invisible symptoms of MS. Even people close to you may not notice that you are in pain. It can be good to share how you are feeling and to ask for help when you need it. Some people find it helpful to join groups like the MS Trust Facebook group to ask questions and share experiences with others who have also experienced pain due to MS.
How is pain treated?
How your pain is treated will depend on the cause and severity of the pain. This means that you need a thorough assessment to decide whether the pain is nerve pain, muscle pain or might be due to causes other than MS. Assessment may be carried out by a neurologist, MS nurse, physiotherapist, or occupational therapist, amongst others, depending on the type of pain and the likely choice of treatment. You may be referred to a pain clinic to see the specialist pain team.
Treating pain often means trying several treatments one after the other, or perhaps at the same time, to see what works best for you. You have a role to play, not only in following the advice of your health professionals about treatments, but in making changes to your daily life to minimise your pain and its effects on you. Your health professionals should review your treatment regularly and suggest alternatives if something is not working well.
It may not be possible to get rid of your pain completely so it may be a case of managing it as well as possible to reduce its impact on everyday life.
Drug treatments for nerve pain
Not all nerve pain will be treated, for example, numbness and loss of sensation may not be treated unless they are causing particular distress.
The National Institute for Health and Care Excellence (NICE) has issued guidelines for the treatment of nerve (neuropathic) pain. As common painkillers are not effective against nerve pain, NICE recommends that people with MS should try amitriptyline (Triptafen), duloxetine (Cymbalta), gabapentin (Neurontin) or pregabalin (Lyrica) first. Treatment usually starts with a low dose and then builds up slowly until an effective dose is reached. However, as pain is different for each person, health professionals may recommend different options depending on what may be best for you as an individual.
With any treatment, there is the possibility of side effects so these should be discussed. Many side effects wear off or can be managed effectively. For example, if a medication makes you sleepy, it may be best to take it last thing at night. This way it could act as a positive in helping you sleep if your night’s rest has been disrupted by pain.
The guidelines also suggest that you and your health professional should agree a treatment plan that takes into account your concerns and expectations. Your treatment should be reviewed regularly and, if a drug is not working well enough, one of the others should be tried.
Although, nerve pain can usually be improved with drug treatments, it is often best to take other steps to managing the pain yourself (see below).
Treatments for musculoskeletal pain
Musculoskeletal pain may be helped by common pain relieving drugs such as paracetamol, ibuprofen or aspirin. If the pain is due to muscle stiffness (spasticity), then treatments for spasticity may be offered.
A physiotherapist can identify any changes in your posture or walking that may be causing pain. They can also advise you on exercises to strengthen certain muscle groups and so keep you flexible and mobile and reduce your pain. If you have difficulty moving, a friend, family member or carer may be able to gently help you stretch.
If the pain has arisen as a result of poor posture when sitting or standing, a physiotherapist will help you to correct that posture and relieve the strain on the painful joints or soft tissues. A referral to the wheelchair clinic may also be helpful to be assessed for devices, like shaped cushions or T-rolls, to use in your chair to improve posture.
An occupational therapist (OT) can suggest equipment that might help you at home or work, or when getting out and about. OTs may also suggest lifestyle changes to make things easier for you and help relieve your pain. Making several small changes can add up to a large improvement in managing your pain.
TENS (transcutaneous electrical nerve stimulation) is the application of small harmless electric signals to reduce pain. TENS may work for pain that is burning, tingling or shooting in nature, for back pain and painful leg spasms, especially if medications for spasms and spasticity are not tolerated.
Rehabilitation, usually abbreviated to rehab, can reduce the impact of symptoms or disability on daily life. It can help you to live life as fully as possible and minimise the impact of your pain on work, education and family life. You may work with a multidisciplinary team that includes a rehab consultant, nurses and therapists.
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- London: NICE 2013. Full guideline Neuropathic pain – pharmacological management: The pharmacological management of neuropathic pain in adults in non-specialist settings