MS pain (aka: Dysesthesia) is a type of chronic pain triggered by the central nervous system (CNS). It’s commonly associated with multiple sclerosis (MS), a disease that causes damage to the CNS.
Pain doesn’t always enter the discussion when talking about MS, but it’s actually a common symptom.
Dysesthesia often involves sensations such as burning, electric shock, or a general tightening around the body. It generally occurs in the legs, feet, arms, and hands, but it can affect any part of the body.
The types of dysesthesia include scalp, cutaneous (affecting the skin), and occlusal (teeth).
Scalp dysesthesia, also called burning scalp syndrome, involves pain, burning, stinging, or itching on or under the scalp. There is usually no rash, flaking, or other visible irritation.
A 2013 study suggests that scalp dysesthesia may be related to cervical spine disease.
Cutaneous dysesthesia is characterized by a feeling of discomfort when your skin is touched.
The symptoms, which can range from mild tingling to severe pain, may be triggered by anything from clothing to a gentle breeze.
Occlusal dysesthesia (OD), also called phantom bite syndrome, is discomfort in the mouth when biting, usually with no obvious cause.
Although OD was initially believed to be a psychological disorder, a 2017 case report suggests it could be associated with a condition in which the teeth of the lower and upper jaws aren’t aligned, resulting in an imbalanced bite.
Dysesthesia vs. paresthesia vs. hyperalgesia
It’s easy to confuse dysesthesia with paresthesia or hyperalgesia, both of which can also occur with MS.
Paresthesia describes sensory symptoms such as numbness and tingling, “skin crawling,” or that “pins and needles” feeling. It’s distracting and uncomfortable, but not generally considered painful.
Hyperalgesia is increased sensitivity to painful stimuli.
Dysesthesia is more severe than paresthesia and has no apparent stimuli.
Dysesthesia can be intermittent or continuous. The sensations can be mild to intense and may include:
aching or throbbing
burning or stinging
shooting, stabbing, or tearing pain
electrical shock-like sensations
The pain and strange sensations associated with dysesthesia may be due to sensory nerve damage. The incorrect signals from your nerves can cause your brain to stimulate strange sensations.
For example, you may have painful sensations in your leg even though there’s nothing wrong with your leg. It’s a communication problem between your brain and the nerves in your leg, which stimulates a pain response. And the pain is very real.
When you have burning or itching, you might usually reach for topical treatments. But because there’s no real issue with your skin or scalp, that won’t help with dysesthesia.
Treatment is different for everybody. It may take some trial and error to find the best solution for you.
There are many over-the-counter (OTC) pain relievers such as acetaminophen (Tylenol) and ibuprofen (Motrin) usually aren’t effective for treating neuropathic pain like dysesthesia, according to the National Multiple Sclerosis Society. Neither are narcotics or opioids.
Just as your MS is different than other people’s MS, your response to treatments will be unique. Because I am a health and wellness coach, I believe in healing naturally, here are some tricks and tips I've learned living with MS for 34 years.
Dysesthesia can usually be naturally managed by:
Changing the diet and removing foods that cause inflammation - which comes out as symptoms, wreaking havoc on the body.
Meditate to lower your sensitivity to uncomfortable sensations. There are eight popular types of meditation practice:
Apply warm or cold compresses to affected areas. Altering body temperature is another way to convert your pain to a different sensation. Experiment with the hot and cold compresses to determine what brings the most relief.
Practice deep breathing. The goal is to summon the relaxation response, which helps offset the affect of painful sensations.
Try acupuncture. More clinical trials are needed to prove acupuncture definitely improves MS symptoms. However, there have been studies of people with conditions other than MS who’ve successfully used acupuncture to treat pain.
Use biofeedback. Electrical sensors give you information about your body so you can make small changes to ease pain. For example, you might learn to relax certain muscles or slow your breathing to calm the unpleasant sensations.
Apply skin-calming lotions, creams, and washes containing calamine or aloe
Exercise – but not too strenuously. There are many types of exercise/movement that are beneficial, such as: walking, stretching, yoga, gentle swimming or other activities recommended by a wellness coach are best. Becoming stronger and more flexible helps manage dysesthesia.
Wear loose-fitting, cool, clothing. Cotton clothing and bedding are good choices because the fabric is “breathable” and soft to the touch.
Close to bedtime, take a lukewarm bath with Epsom salts and colloidal oats, elements known to soothe the skin.
Stay cool. Heat can stimulate sensations and intensify steady pain. If you must go out in hot weather, wear a cooling vest, hat, and scarf. Don’t take very hot baths or showers. Always be aware of your body temperature during exercise.
Avoid drastic temperature changes. Even something as simple as a sudden blast of cold air from your car’s air conditioner or stepping into a sauna could set off abnormal sensations.
Keep a daily diary of foods and activities. Describe how you’re feeling, along with any new symptoms or symptom flares. Over time, you may be able to identify what triggers your dysesthesia.
Get a good night’s sleep. Fatigue can heighten sensitivity to pain. MS symptoms as well as conditions not related to MS can interfere with sleep. An overnight study done at a sleep clinic will help pinpoint the underlying problems keeping you from resting well.
The use of essential oils (aka: aromatherapy) has boundless therapeutic properties. Can be used in massage therapy, in a diffuser, and roll-on directly applied to skin (affected area), or inhale from a cotton ball.
More than half of people with MS experience pain as a significant symptom. About 1 in 5 people with MS who report continuous pain describe it as a burning pain that mostly affects their legs and feet.
MS causes the formation of scar tissue, or lesions, in the brain and spine. These lesions interfere with signals between the brain and the rest of the body.
One common type of dysesthesia experienced by people with MS is the MS hug, so called because it feels like you’re being squeezed around your chest. It can be described as a crushing or vice-like grip causing pain and tightness in your chest and ribs.
Here are some other reasons a person with MS might have strange sensations or pain:
spasticity (muscle tightness)
injection site reaction or side effects of medication, including disease-modifying drugs
Of course, your symptoms could be completely unrelated to MS. They could be due to injury or another underlying condition.
Like other symptoms of MS, dysesthesia can come and go. It can also completely disappear without treatment. Also like many other symptoms of MS, when you and your doctor find the right treatment, you’ll experience dysesthesia less frequently.
Please consult with your doctor or healthcare practitioner if your symptoms are getting worse or if you need help managing your symptoms.