A lot of people with MS experience pain at some time. It varies from person to person and over time, but drug treatments and other therapies can help you cope.
Pain can be associated with stiffness or spasms in muscles, or symptoms like Lhermitte's sign, trigeminal neuralgia or optic neuritis. It may also include symptoms affecting the senses that are not always thought of as ‘pain’, like numbness or pins and needles, or a tightness in the chest known as the 'MS hug' or 'MS girdle'.
Pain can be one of the most difficult 'invisible’ symptoms to describe and manage. Only the person experiencing it knows how it feels. It has an emotional element – it can cause distress, fear, anger and frustration, which in turn affect how you deal with it.
Pain can be exhausting, can affect your mood and your ability to do everyday activities.
About pain in MS
How to describe different types of pain
If you can describe pain well, both to health professionals and those around you, there is more chance it can be managed.
Sensations change, so try to describe the level at which they affect you. For example, a tingling in the hand may sometimes be a niggling inconvenience, or it might make holding things difficult or very painful.
When describing it, use whatever words seem best, even if they seem odd. Some words people use to describe pain:
- squeezing or crushing
- hot or burning
- like ants under my skin or ‘creepy crawlies’
- like a build up of pressure
- like an electric shock
- pins and needles
What's causing my MS pain?
Pain may be caused directly, due to nerve damage, or indirectly, due to other MS symptoms.
Pain could also be:
- a side effect of drugs
- linked to an accident or other health condition not related to MS
- caused by internal symptoms, such as a bladder infection
Neuropathic pain is caused by MS nerve damage in the brain and spinal cord. Nerve damage might cause a range of sensations, from minor irritations to intense sharp or burning pains.
Musculoskeletal pain is the pain in muscles and joints that comes from living with the stresses and strains MS places on the body. For example, difficulties with balance, fatigue or muscle weakness could lead to problems with posture, putting a strain on joints, ligaments or other muscles.
Types of pain caused by MS
Pain with MS can be:
- Acute - short-term, but it may come back
- Paroxysmal - occurring in sudden attacks
- Chronic - long lasting
In all three, pain can range from mild to severe or varying. Knowing how to describe your pain to your GP or neurologist can help you find the right course of treatment.
MS can damage the nerves that affect your muscles. This can cause acute or paroxysmal pain in the form of spasms. Your arms and legs might shoot out uncontrollably and might have pain like cramping or pulling.
Nerve pain can also be chronic in the form of painful or unusual sensations on your skin. These types of pain can happen anywhere on your body but are usually in the face, arms and legs. This type of nerve pain can present itself as:
- extreme sensitivity to touch
- pins and needles
- abnormal sensations like: burning, stabbing, electric shock, aching and tightening
This is often one of the first symptoms of MS. It’s caused by inflammation of your optic nerve and usually only affects one eye. Problems with sight, like blurred or double vision, might come on with a sudden sharp pain behind your eye. The pain might be aggravated when you move your eye to look around.
Lhermitte’s sign (pronounced "lair-meets") is a sudden brief pain or electrical buzzing sensation. It runs down your neck into your spine and might then spread into your arms or legs.
It can be triggered when you bend your neck forward, or after a cough or sneeze. Lhermitte’s sign is a sharp but short-lived pain (usually lasting a few seconds). You might hear it described as an acute or paroxysmal pain.
This is an uncommon symptom that affects only 2 - 5% of people with MS at some time. It presents itself as a sudden severe pain in your face that comes and goes. It’s caused by damage to the trigeminal nerve inside your head. This large nerve has three main branches so the place you feel pain depends on which branches of the nerve are damaged.
Squeezing or banding (sometimes called the MS hug)
This is caused by the small muscles between your ribs, called the intercostal muscles, going into spasm. It can feel like a tight band around the trunk of your body. It’s not dangerous but can be very scary. The MS hug can last for a short or long time, and it can come and go.
Treating pain in MS
It’s not always immediately obvious how best to treat pain, and you may need to try a number of therapies and drugs to find one effective for you.
It can be a frustrating process, but it’s important to persevere as people do manage to control and live with pain every day.
These tips might help:
- Talk to a health professional so you can begin investigating the causes
- Discuss your personal coping strategies with your doctor – these may be causing other difficulties, or some (for example relaxation techniques) may be helpful as part of a management programme
- Mention any triggers that you are aware of
Remember, your circumstances and mood, both positive and negative, can affect the way you deal with pain.
Pain treatment and management options for MS
Drug treatments for MS pain
Drugs alone are not usually the answer, partly because their usefulness has to be balanced against side effects. However, they are often an effective part of managing pain.
Pain patches that deliver a dose of painkillers can also be used. There are other drug treatments that can be applied directly to the skin where you feel the pain.
- Anticonvulsants Some of the most commonly used anticonvulsants are carbamazepine, gabapentin, lamotrigine and phenytoin. These help some people control the facial pain of trigeminal neuralgia and other acute neuropathic pains. Some may also give some relief from 'burning', 'throbbing', or 'pins-and-needles' pains. Possible side effects vary between the different drugs, but can include a skin rash, dizziness, blurred vision and drowsiness.
- Antidepressants Amitriptyline is widely used. It belongs to a group of drugs called 'tricyclic antidepressants', and you may be prescribed other similar antidepressants from this group. These can be useful for treating certain types of longlasting pain, such as when skin becomes painfully sensitive to even the lightest touch. Possible side effects from tricyclic antidepressants include dry mouth, constipation and blurred vision.
- Steroids For information about steroid treatments, see the page on managing relapses.
Drugs for musculoskeletal pain
- Analgesic painkillers Drugs like paracetamol, aspirin, ibuprofen, codeine and morphine can help control non-neuropathic pain (they are not usually effective for neuropathic pain).
Non-drug treatments for MS pain
- occupational therapy – there may be adjustments that can be made to your living or working space that help to reduce pain
- Transcutaneous Electrical Nerve Stimulation (TENS) where electrodes are placed on the skin to stimulate nerves
- complementary and alternative therapies such as t’ai chi, yoga, acupuncture, meditation, relaxation or hypnosis
- surgery – usually only used when other approaches have not proved effective
Other approaches that may be useful when treatments do not bring complete relief:
- Pain clinics – where they are available – may be able to look at other methods of minimising the impact of pain. Ask your nurse or doctor.
- Self management programmes – courses run by and for people with long-term conditions
For more detailed information, see our booklet on pain.
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