Altered sensations are a type of nerve pain – also known as neuropathic pain. They are very common in multiple sclerosis (MS) and can occur in any part of the body. The sensations often feel very different from one person to the next. This can make them difficult to describe to other people.
Here, we explain the different types of altered sensations and why they happen. We also look at tips and treatments that can help reduce the impact of this type of nerve pain on your daily life.
Altered sensations, which may also be referred to as sensory symptoms, can be experienced by people with MS in many different ways:
These sensory changes can occur in any part of the body. But they most commonly happen in the face or head, hands or arms, legs or feet. They can also affect the genital area.
The sensations may occur on just one side of the body or on both. Sometimes there may be something that triggers these feelings, for example something brushing against the skin or a cold wind. But often there is no obvious reason for them.
People with MS often say they find that their altered sensations feel worse, or flare-up, when they’re feeling fatigued or stressed.
These strange sensations may feel like they’re coming from your skin or a particular part of your body. But they aren’t caused by issues with the skin or tissues. They’re actually due to the damage caused by MS to the nerves in the brain and spinal cord. This damage disrupts how messages travel along the sensory nerve pathways to the brain. The brain doesn’t know how to interpret these disrupted messages. So, it tries to relate it to something familiar that you’ve experienced before such as:
This is what makes it seem like there is something wrong.
Although altered sensations are very common in MS, it’s not clear how many people are affected. The levels reported in research vary, from less than 1 in 10 to nearly half of all people with MS. It’s likely that the number of people affected is higher than some studies suggest. This is because they don’t always include people with changes in sensation that aren’t painful, such as numbness.
Studies have shown that people in the early stages of MS or with lower levels of disability experience sensory symptoms just as often as those who have been living with MS for longer or with more disability. In fact, this type of nerve pain is often one of the first symptoms of MS.
You may find if you are experiencing altered sensations that they are mostly irritating rather than anything else. Other sensations may seem fairly harmless, but could potentially affect your daily life. A good example is numbness or reduced sensation.
Some altered sensations can be painful or distressing.
Living with altered sensations may also affect your mental health as they can have a negative impact on your quality of life. They can be unsettling and frustrating. They may disrupt your sleep leaving you with low energy levels or making it difficult to concentrate. You may find them distressing – particularly if they are very intense or painful. Research has shown that people living with nerve pain are more likely to experience low mood, anxiety and depression.
Speak to your GP or MS team if you’re experiencing altered sensations for the first time, they are worsening, interfering with your daily life or are affecting your mood.
If you talk to a health professional about this symptom, they will usually refer to altered sensations as pain. This can be confusing as they aren’t always painful. These are the medical terms they might use to describe the different types of symptoms.
You could be asked:
It can be useful to track any altered sensations that you’re experiencing. This information could support you to manage them more proactively by identifying any patterns or triggers. This might help you anticipate when symptoms may flare-up or develop ways to avoid or reduce triggers. You could also share this information with your GP or MS team to help guide any treatment decisions.
You could keep a note of:
Not all altered sensations will be treated. Sometimes symptoms go away without requiring treatment, although they can return periodically. They may not significantly affect your life, or the pain may be short-lived and so drug treatment may not be appropriate or necessary. You might be able to manage the effects yourself by avoiding any triggers, making lifestyle adjustments or adopting techniques to minimise their impact. An occupational therapist (OT) may be able to make suggestions that can help, or provide you with equipment, particularly if numbness is an issue.
Everyone is different so you may need to try different options before you find what works best for you. Persistent symptoms can be difficult to treat. You may need to try a combination of coping techniques, lifestyle approaches and drug treatment for the best effect. Sometimes the changes won’t completely get rid of the sensations but may help reduce their intensity and how often they occur.
There are many things you can try to help you cope with altered sensations. Self-management techniques typically aim to reduce any triggers and support your overall wellbeing.
Studies have shown that low-impact activities like yoga, walking, stretching, swimming and other water-based activities can be beneficial for paraesthesia. Exercise can also help improve other symptoms such as low mood and fatigue which can worsen pain.
Stress can trigger or worsen symptoms. Distraction and relaxation techniques can help with stress management. Options include mindfulness, meditation, or breathing exercises. Exercise that pairs gentle movement with breathwork, such as yoga, Pilates or Tai Chi, may be especially helpful.
If your sensory symptoms are triggered by factors such as touch, going out in the wind or extremes of heat, you could try avoiding or minimising the trigger. Wearing looser clothing could help if your skin is hypersensitive. A scarf can help protect the face from wind or the cold. Layering clothes so they can easily be removed/added can be helpful. Heat can often be a trigger, so staying cool with fans, cooling packs or vests, and avoiding hot baths, showers and saunas can all help.
Sleep can be disturbed for many reasons in MS, including due to nerve pain. This can lead to fatigue and/or depression, which can worsen pain. Establishing a regular sleep routine and a calming bedtime environment may improve the quality of your sleep. Soft sheets and pillows can reduce any discomfort from hypersensitive skin.
For some issues there may be adaptive equipment or aids that can help. For example, a different style of pen, cup or knife may be easier to hold if numbness is affecting your ability to grip. An occupational therapist (OT) can advise you on what is available.
This could be peer support through an MS group where you can share your experiences and swap tips with others. You might want to explore psychological therapies such as cognitive behavioural therapy (CBT), or acceptance and commitment therapy (ACT), which can be used to reduce stress, anxiety and depression. For more professional help you could consider talking to a therapist to work with you on techniques to reduce any distress.
Although altered sensations sometimes feel itchy, or as if the skin is hot or burning, there is no rash or skin irritation associated with this type of sensory symptom – unless you’ve been tempted to scratch the affected area. So, treatments such as calamine lotion or hydrocortisone cream tend not to help. But some people find that applying cold compresses or wet towels provides some temporary relief from these sensations.
Sensory changes in your private parts can mean sex is less enjoyable. If you experience loss of sensation it can make it more difficult to achieve orgasm. Equally, if you develop heightened sensitivity, what was once pleasurable can become very uncomfortable or cause pain. You can read more about ways to help if this is an issue in our pages about sexual issues for men and sexual issues for women with MS.
There are more tips for managing pain that can help with altered sensations on our page on nerve pain. Often people prefer to see if these approaches help before looking at what drug treatments are available.
If the sensations are more persistent, very painful or having a major impact, you might want to seek professional help from your GP or MS team. They may suggest drug treatments.
As altered sensations are a type of nerve pain, the drug treatments that may be of benefit are the same as for other types of nerve pain. Common painkillers such as paracetamol and ibuprofen do not work for nerve pain.
In the first instance, your GP or MS team may prescribe one of the following medications, as recommended by the National Institute for Health and Care Excellence (NICE).
Treatment usually starts with a low dose and then builds up slowly until an effective dose is reached.
Treatments like Botox or pulsed magnetic field treatment have been shown to improve altered sensations, although they are not yet widely used.
There is more information on drug treatments for altered sensations on our nerve pain page.
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