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People living with multiple sclerosis (MS) might expect to experience numerous symptoms, including fatigue, leg weakness, vision problems, emotional changes, muscle spasms, and cognitive (thinking and memory) issues. But other troubling, less common symptoms of multiple sclerosis can also develop — such as facial swelling.
“My face and legs swell every day no matter what I do,” shared one MyMSTeam member. “I’ve learned to deal with my leg swelling, but I do have problems dealing with my face.”
Read more about potential causes of facial swelling in MS, ways to manage it, and when to talk to your neurologist.
Although this symptom isn’t considered typical with multiple sclerosis, many factors can cause facial swelling — also known as facial edema — in which fluid builds up under the skin of the face. General causes of facial swelling include:
Multiple sclerosis is a chronic autoimmune disease in which the immune system attacks the fatty myelin sheath that protects nerves. The process of myelin destruction, known as demyelination, creates scars or lesions in the central nervous system. The lesions disrupt communication between the nerves of the brain and spinal cord.
Although demyelination may not directly cause facial swelling, people with MS may find themselves at a higher risk of facial swelling if they develop other diseases or take medications that can cause swelling as a side effect.
People with MS may develop additional diseases or comorbidities — the term for having more than one disease at the same time. Comorbidities often lead to additional symptoms and can result in facial swelling for people with MS.
The trigeminal nerves are two large nerve fibers that run along the side of your face from your ears to your eyes, cheeks, and jaw. Trigeminal neuralgia — also known as tic douloureux — is a sharp, stabbing nerve pain described as an electric shock that usually affects just one side of the face. This chronic pain is caused by a loss of myelin surrounding the trigeminal nerve. Trigeminal neuralgia occurs more often in people with MS compared with the general population.
While electrical pain is the hallmark symptom of trigeminal neuralgia, attacks are sometimes accompanied by facial swelling as well as salivation, tears, and discolored skin.
People with MS may be more likely to develop other health conditions that can cause facial swelling, such as thyroid disease, trigeminal neuralgia, or optic neuritis.
Some members of MyMSTeam have experienced this combination of intense pain and facial swelling. One wrote, “I can hardly stand the pain, and my face is swollen badly on one side.”
Another member who related to that post shared, “I have been suffering from breakthrough pain, including swelling, for more than a month now.”
The thyroid, a tiny gland at the base of the neck, produces the hormones that control the body’s metabolism. Many thyroid diseases are autoimmune in nature, and some have been associated with MS.
Thyroid disease results in either too much or too little thyroid activity and hormone production. Symptoms vary depending on whether thyroid hormone levels are too high or too low. Thyroid disease can cause your face to look swollen or “doughy,” especially around the eyelids and lips.
Sinusitis occurs when spaces within your nose become inflamed. This can lead to swelling of your eyes, cheeks, nose, and even your forehead as the inflammation progresses. One study of 92 people with MS showed that they had significantly higher rates of chronic sinusitis than people without the condition.
MS is treated with disease-modifying therapies (DMTs) that prevent MS progression and reduce the rate of relapses. MS flares (also known as exacerbations or attacks) or optic neuritis (inflammation of the optic nerve, common in people with MS) may be treated with corticosteroids. Other medications might be used to manage specific MS symptoms.
Like all drugs, medications for managing MS can have side effects. In some cases, these side effects may include facial swelling.
Allergic reactions are a common cause of hives and angioedema. Although angioedema can affect other areas of the body, it often results in a puffy face, with swollen lips, eyes, and cheeks.
Even though you may tolerate a drug well for many years, you can develop an allergy to it at any time. If you take any medication and develop sudden angioedema or have trouble breathing or swallowing, contact your health care team immediately.
Allergic reactions are among the risks of some drugs that might be used to treat MS or manage symptoms, including:
A puffy face may be a sign of an allergic reaction or a side effect of a medication you’re taking for MS or another condition.
A case report of three people with MS showed that cladribine triggered skin reactions, including facial swelling, from three to 192 days after the drug was given. Carbamazepine also has been linked with rare but serious allergic reactions that can cause angioedema.
Prolonged treatment with methylprednisolone, prednisone, and other steroids can lead to facial swelling and fluid retention, gradually leading to a so-called “moon face.”
The experiences of MyMSTeam members also highlight the risk of facial swelling as a side effect. When discussing prednisone injections, one member said, “Prednisone is often referred to as the ‘moon-faced drug’ because of its potential effect of making your face rounder.”
This drug-related swelling can last for extended periods. Another member noted, “For me, it typically takes a few weeks for the swelling (puffy face, hands, and feet and water weight) to diminish completely.”
In general, edema will go away on its own if left untreated. However, if you’re experiencing facial swelling, you might find relief by keeping your head elevated, which helps reduce fluid buildup in your face. You can also try placing a cold compress on the affected area to reduce swelling.
You can also check with your doctor about the following treatment options:
Also, reach out to your health care provider if:
Your doctor can help you find the most effective way to address facial swelling and other MS symptoms and help boost your quality of life.
If facial swelling doesn’t go away or is associated with trouble breathing or swallowing, seek medical assistance.
On MyMSTeam, the social network for people with MS and their loved ones, more than 207,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Are you experiencing facial swelling with MS? Share your experience in the comments below, or start a conversation by posting on your Activities page.
Federica Polidoro, M.D.
a graduate of medical school and neurology residency in Italy, furthered her expertise through a research fellowship in multiple sclerosis at Imperial College London.
Learn more about her here.
Brian Niemeyer, Ph.D.
received his doctorate in immunology from University of Colorado Anschutz Medical Campus..
Learn more about him here.
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Trigeminal Nueralgia causes the side of my face to swell when it flares. My nuerologist has me take an extra Tegretol & use an ice pack on my face. That works well for me.
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