Apart from these common symptoms, many members of MyMSTeam have experienced facial swelling. One MyMSTeam member explained, “My face and legs swell every day no matter what I do. I have learned to deal with my leg swelling, but I do have problems dealing with my face.”
Although it is not seen as a typical multiple sclerosis symptom, many factors can cause facial swelling — also known as facial edema — where fluid builds up under the skin of the face. Some of the general causes of facial swelling can include:
Multiple sclerosis is a chronic autoimmune disease in which the immune system attacks the fatty sheath (myelin) that protects nerves. The process of myelin destruction (demyelination) creates lesions (scarring) in the central nervous system, which disrupts 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 from the development of secondary diseases and the treatments they take to manage their MS.
Many people with MS may develop additional diseases or comorbidities — the term for having more than one disease at the same time. These comorbidities often result in additional symptoms and can result in facial swelling for people with MS.
The trigeminal nerves are two large nerves 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 pain that usually only affects one side of the face. This chronic pain condition is caused by a loss of myelin surrounding the trigeminal nerve.
Both inflammation and facial swelling have been associated with cases of trigeminal neuralgia. Further, the prevalence of trigeminal neuralgia is high in people with MS. It is estimated that four percent to six percent of people with MS will develop trigeminal neuralgia — nearly 400 times more often than the greater population.
This combination of intense pain and facial swelling is reflected in the experiences of MyMSTeam members. One MyMSTeam member wrote, “I can hardly stand the pain and my face is swollen badly on one side.” Another member could relate to that post, and shared, “I have been suffering from breakthrough pain, including swelling, for more than a month now.”
The thyroid is a tiny gland found at the base of the neck that is responsible for producing the hormones that control the body’s metabolism. Many thyroid diseases are autoimmune in nature, and many have been associated with MS.
Thyroid disease results in either too much or too little thyroid activity and hormone production (which way the effects lean depends on the type of condition a person has). This imbalance of hormones can lead to the development of facial symptoms, including puffiness and edema.
Sinusitis is when the spaces within the nose become inflamed. This can lead to swelling of the eyes, cheeks, nose, and even forehead as the inflammation progresses. Previous studies have shown that rates of chronic sinusitis were significantly higher in people with MS.
Often the first symptom of MS, optic neuritis is a severe inflammation of the eye caused by demyelination of the optic nerves. This results in a loss of signal between the eye and brain, which can lead to loss of vision. As inflammation progresses, this can lead to swelling of the optic nerve of one or both eyes.
There are numerous treatments for MS, including:
While these drugs are critical for treating MS, they can also have side effects that lead to facial swelling.
Allergic reactions are a very common cause of hives and swelling in the face (known as angioedema). Although angioedema can affect other areas of the body, it often results in a puffy face with swelling in the lips, eyes, and cheeks.
Though you may tolerate a drug well for many years, you can still develop an allergy to it at any time. If you take any medication and experience sudden angioedema, or have trouble breathing or swallowing, contact your health care team immediately.
Common MS drugs with a risk of sudden facial swelling as a result of allergy include:
A recent report of three people with MS showed cladribine triggered skin reactions, including facial swelling, up to 192 days after each had received injections. Though rare, carbamazepine also has been linked with serious allergic reactions that can cause angioedema. And while prolonged treatment with methylprednisolone, a type of steroid, can lead to facial swelling and fluid retention, gradually developing so-called “moon face” is different from having an allergic reaction to the drug. Facial swelling due to a drug allergy happens suddenly, and it can affect breathing and more.
The experiences of MyMSTeam members also highlight the risk of face swelling as a drug side effect. When discussing prednisone injections, one MyMSTeam 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. One member noted, “For me, it typically takes a few weeks for the swelling (puffy face, hands, feet, and water weight) to diminish completely.”
In general, edema will often go away on its own if left untreated. However, if you are experiencing facial swelling, the following treatment options may provide relief:
Reach out to your doctor if:
On MyMSTeam, the social network for people with MS and their loved ones, more than 185,000 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.