Altered sensations are fairly common in multiple sclerosis. You might feel pins and needles, burning or crawling sensations, numbness or tightness.
These unusual sensations are a type of nerve (neuropathic) pain. Although the feelings seem to be in the skin, they are actually due to damage caused by MS which disrupts messages passing along nerves in the central nervous system.
What are altered sensations?
Altered sensations can occur in any part of the body, most commonly in the face, body, arms or legs, but may also include the genital area in both men and women. It may occur on just one side of the body or on both sides.
There are many ways that people with multiple sclerosis describe altered sensations including:
- Pins and needles
- Sensitive skin
- Electric shock
Although altered sensations in MS may feel itchy, there is no rash or sign of skin irritation unless you’ve been tempted to scratch the itchiness.
Health professionals may ask you whether:
- there is a lack of sensation, as in numbness, or a gain of new sensation, for example a burning feeling
- the altered sensation is painful or not
- the feeling is set off by touch, heat or other triggers or just happens for no obvious reason.
Your MS team may use the following terms in describing your experiences:
- Allodynia: where something like a light touch feels painful, even though it shouldn’t cause pain
- Paraesthesia: an annoying unusual sensation, like tingling or numbness, which may be triggered or just happen spontaneously
- Dysaesthesia: a more intense, sometimes painful, feeling which happens spontaneously
- Sensory symptoms, a more general term for altered sensations.
What causes altered sensations?
Although it feels like something is going on in the skin, the sensations are really due to damage caused by MS to the nerves in the brain and spinal cord. This damage interferes with the normal transmission of messages to the brain. The brain can’t interpret the signals it is receiving as it is outside its experience. To deal with this, it tries to relate it to something the body has experienced before such as itching or burning. Alternatively, the brain may relate it to some other sensation that it can imagine like having insects crawling all over you.
Although the sensation 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.
How many people get altered sensations?
In a study of 428 people with MS, 8 in every 100 reported experiencing painful altered sensations (dysaesthesia) in the previous six months. 12 in every 100 people in the same study reported experiencing dysaesthesia at some point in their life. The total number of people who experience altered sensations is likely to be much higher because this study did not count those who had non-painful changes in sensation, such as numbness.
In a study of 224 people with MS, 40% reported experiencing periods of altered sensation lasting from seconds to minutes. The most common description was burning followed by electric shock, insects crawling and then itching. People with early disease and without disability had sensory symptoms just as often as those with disability. This reflects the observation that altered sensation is often one of the first symptoms of multiple sclerosis.
What can I do if I have altered sensations?
Altered sensations may go away completely without treatment or they may return periodically. Persistent symptoms can be difficult to treat. If the altered sensation is having a major impact, your health professionals may suggest drug treatments. Otherwise, managing any trigger factors or changing how you carry out daily tasks may be helpful.
How are altered sensations treated?
Drug treatments for altered sensation
Altered sensation is a type of nerve pain so possible drug treatments are the same as for other types of nerve pain. Treatments like Botox or pulsed magnetic field treatment have been shown to improve altered sensations as well as chronic pain, although they are not yet widely used.
Although altered sensation sometimes feel itchy, there is no rash or sign of skin irritation so creams which are typically used to treat skin irritation, such as hydrocortisone, and other skin calming lotions, like calamine, are not helpful.
If altered sensations are interfering with your daily activities, an occupational therapist may be able to provide equipment or make suggestions to help. This is particularly true for numbness, for example:
- numbness in the feet can cause difficulty walking as it is hard to feel the floor. This could increase the risk of falls
- numb hands may make it difficult to write, dress or hold a cup, knife or other object safely
- severe numbness in the face can increase the risk of biting the inside of the mouth or tongue whilst eating or chewing
- numbness in any part of the body can increase the risk of burning yourself without realising so it may be important to take care around hot water, fires and other sources of heat.
How can I manage altered sensations myself?
- Triggers. If your altered sensation is triggered, for example, by touch, heat or going out in the wind, you could try avoiding or minimising the trigger. Wearing looser clothing, applying a cool pack or wearing a scarf may be helpful in these cases.
- Change your habits. It can be helpful to change the way that you usually do something. A different style of pen, cup or knife may be easier to hold. A more upright, supportive chair could be helpful. 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 easier for you. Ask your family, friends and colleagues to work with you so that they understand how these changes will help you.
- Sexual issues. Numbness or reduced sensation can affect the genital area for both men and women with MS and potentially pleasurable sensations can become uncomfortable. You can read more about sexual issues for men with MS and for women with MS.
- Other options. Many of the tips for managing pain yourself also help with altered sensations. They include using heat, cold or relaxation techniques as well as keeping positive and sharing your thoughts about your symptoms and their impact.
- Exercise. A study showed that an 8 week gentle activity programme (yoga or aquatic exercise) significantly improved paresthesia for women with MS, as well as improving their fatigue and mood.
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.
- Med Sci Sports Exerc. 2016 May;48(5):796-803 Summary Exercising Impacts on Fatigue, Depression, and Paresthesia in Female Patients with Multiple Sclerosis.
- Multiple Sclerosis 2008;14(4):514-21. Summary Lifetime and actual prevalence of pain and headache in multiple sclerosis.
- Multiple Sclerosis 1999;5(3):179-83. Summary Sensory symptoms of multiple sclerosis: a hidden reservoir of morbidity.
- Clin Neurol Neurosurg. 2016 Oct;149:171-4 Summary Evaluation of pulsing magnetic field effects on paresthesia in multiple sclerosis patients, a randomized, double-blind, parallel-group clinical trial.
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Tingling, crawling, burning or prickling?
People with MS often experience strange sensations in the skin. They can be really hard to describe and feel downright weird.