What You Should Know About Eosinophilia-Myalgia Syndrome

Eosinophilia-myalgia syndrome (EMS) is a rare disorder that causes inflammation in different parts of the body including muscles, skin, and lungs. EMS causes high levels of white blood cells known as eosinophils. These eosinophils build up within the body and can cause serious complications.

EMS was first recognized in 1989 when three women in New Mexico sought medical treatment for sets of similar symptoms. These women had all taken the same brand of a health supplement, L-tryptophan, which happened to be tainted. L-tryptophan is a substance that occurs naturally in food (like turkey). The amount of L-tryptophan we get from food is significantly less than the amount found in our food. Large amounts of the substance were created as supplements. Even though there was no scientific proof, some people claimed L-tryptophan could successfully treat depression, anxiety, premenstrual syndrome, and insomnia. Over-the-counter L-tryptophan was banned in 1990 after thousands were affected by EMS.

Cases of EMS have been reported that are not linked to taking L-tryptophan. However, the number of EMS cases has dropped off significantly since the 1989 outbreak and L-tryptophan being taken off of the market. The exact number of EMS cases is unknown. Although, it is estimated that anywhere from 5,000 to 10,000 people have the disorder. The majority of cases were reported in American women; however, the syndrome has been reported in Germany, Canada, and the United Kingdom as well.

The most difficult symptom of EMS is generalized, severe muscle pain that tends to worsen over weeks and may cause muscle spasms. Symptoms tend to begin suddenly and range from mild to severe. The condition can cause life-threatening complications and may be fatal.

The disease goes through phases –– acute and chronic. The phases share many common symptoms including muscle pain and fatigue. The acute phase comes first and may last anywhere between three and six months. The most common symptoms of the acute phase are skin changes and muscle pain in the arms and legs. The skin of those affected may swell, thicken, or harden –– known as (eosinophilic fasciitis).

During the chronic phase, symptoms appear to flare. They may act up for a period of time and then go into remission. Overall symptoms include:

• Swelling of the arms and legs, and sometimes the face
• Joint pain
• An extremely itchy skin rash
• A cough and shortness of breath
• Fatigue
• Fever
• Patchy hair loss (alopecia)
• Bladder issues
• Behavioral changes (irritability, mood changes)
• Cognitive difficulties (memory issues, trouble concentrating)
• Digestive issues (nausea, vomiting, cramping)
• Heart abnormalities (inflammation, irregular heartbeat)

Digestive and cardiac issues are more likely to occur during the chronic phase of the condition. EMS is sometimes misdiagnosed as fibromyalgia, chronic fatigue syndrome, lupus erythematosus, or arthritis.

There is no cure for EMS, so treatment focuses on relieving symptoms. Those with EMS may be prescribed muscle relaxants and pain relievers. Prednisone helps some people, but not all. EMS is a chronic (long-term) illness. In a study of 333 people with EMS, only 10 percent reported a full recovery after four years with the disease.