Table of ContentsView AllTable of ContentsCausesSymptomsDiagnosisTreatmentPrognosis
Table of ContentsView All
View All
Table of Contents
Causes
Symptoms
Diagnosis
Treatment
Prognosis
Eosinophilia-myalgia syndrome (EMS) is a rare disorder in which white blood cells known aeosinophilsbuild up in the body, causinginflammationin different areas including the muscles, skin, and lungs. Eosinophilia-myalgia syndrome can cause symptoms like itchy rash, fatigue, and joint pain, but also serious complications like irregular heartbeat and memory issues. It can even be fatal.
There is no test for EMS, so it may be misdiagnosed as a condition with similar symptoms such asfibromyalgiaorlupus. And while eosinophilia-myalgia syndrome has long been linked to L-tryptophan—an amino acid available in supplement form, the disorder has also been diagnosed in people without a history of using these products.
This article explains EMS and its symptoms, as well as its potential causes. It also discusses how eosinophilia-myalgia syndrome is diagnosed and the treatment options.
Burak Karademir / Moment / Getty Images
Causes of Eosinophilia-Myalgia Syndrome
Eosinophilia-myalgia syndrome (EMS) first emerged in the United States in October 1989 when three women in New Mexico sought treatment for similar symptoms. The epidemic eventually included 1,500 people and caused 37 deaths.
L-Tryptophan Supplements
L-tryptophan naturally occurs in certain foods, but during the 1989 epidemic the symptoms of severe muscle pain with elevated eosinophil levels were linked to synthetic L-tryptophan products.
Patients reported taking the supplement for stress, depression, premenstrual syndrome (PMS), and other reasons.In 1990, the Food and Drug Administration recalled all L-tryptophan supplements because of the link to EMS.
Scientists have since concluded that the cause of the 1989 outbreak was not the L-tryptophan itself, but contaminants introduced during the manufacturing process.After 1994, synthetic L-tryptophan was again legal to sell and manufacture in the U.S.
Other Supplements
Not all known cases of EMS are associated with L-tryptophan. Although evidence is based on only a handful of cases from the time of the 1989 outbreak, there may also be a relationship between EMS and other supplements such as:
The National Institutes of Health (NIH) has also warned of other eosinophilia-myalgia syndrome cases associated with the supplement 5-HTP, which is chemically similar to L-tryptophan and may contain similar contaminants. The NIH advises using 5-HTP with caution.
Genetics
Some researchers think people who develop eosinophilia-myalgia syndrome may be geneticly predisposed to developing disorders related to the body’s ability to metabolize tryptophan.
Other Risk Factors
Studies also suggested that most people who took the supplement were susceptible to getting EMS, with the risk increasing with quantity consumed. Older age also appears to make the risk of developing EMS higher.
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Symptoms of EMS
The most common symptom of eosinophilia-myalgia syndrome is generalized, severe muscle pain that tends to worsen over weeks and may causemuscle spasms. Symptoms tend to begin suddenly and range from mild to severe. The condition can cause life-threatening complications and may result in death.
Eosinophilia-myalgia syndrome goes through acute and chronic phases that share symptoms of muscle pain and fatigue. The acute phase may last anywhere between three and six months, with common symptoms of skin changes and muscle pain in the arms and legs.
The skin of those affected may swell, thicken, or harden as they develop eosinophilic fasciitis. People who have this condition over a long time may also develop impaired function in affected joints.
During the chronic phase, symptoms appear to flare. They may act up for a period of time and then go into remission. Overall symptoms of eosinophilia-myalgia syndrome in this phase include:
Digestive and cardiac issues are more likely to occur during this phase as well.
Can High Eosinophils Cause Hair Loss?Researchers are still working to understand this link between high eosinophil levels and hair loss.However, hair loss does occur in up to 22% of people with an atopic condition (asthma, allergies, eczema). And this type of hair loss, calledalopecia areata, also has been seen in people with eosinophil-related disorders.
Can High Eosinophils Cause Hair Loss?
Researchers are still working to understand this link between high eosinophil levels and hair loss.However, hair loss does occur in up to 22% of people with an atopic condition (asthma, allergies, eczema). And this type of hair loss, calledalopecia areata, also has been seen in people with eosinophil-related disorders.
Alopecia Areata Self Care and Medical Treatment
How is Eosinophilia-Myalgia Syndrome Diagnosed?
In addition to conducting a physical exam and running blood tests, your healthcare provider must consider all factors related to your personal health history, especially medication use.
In the developed world, medication is the most common cause of elevated eosinophils (eosinophilia),so it’s important to rule out other drug responses before diagnosing eosinophilia-myalgia syndrome.
Some of the drugs that can cause eosinophilia include:
More rarely a severe form of response occurs, called drug reaction with eosinophilia and systemic symptoms (DRESS). Antibiotics and anti-seizure drugs, as well as antivirals used to treat human immunodeficiency virus (HIV)infection, are most often linked to serious DRESS episodes.
How HIV Is Treated
The most important step in treating EMS is discontinuing the supplement that triggered it. In people with mild symptoms, this is sometimes all that is necessary. For most people, however, it is not enough to simply stop taking the supplement.
Medication
Among the medications used to treat symptoms of eosinophilia-myalgia syndrome are:
During the 1989 outbreak, some patients treated with the anti-cancer drug methotrexate reported improvement in major symptoms like fatigue, edema, and muscle symptoms.
A follow-up study two years after the outbreak found that prednisone was the only treatment that seemed to be helpful in the early stages of the disease, with 79% of patients reporting improvement.
Lifestyle Changes
People living with eosinophilia-myalgia syndrome may need to make lifestyle changes. While little is known about long-term impacts and life expectancy, staying as physically active as possible appears to offer some benefits. Be sure to discuss diet, exercise, and other lifestyle changes with your healthcare provider.
For most people, EMS is a chronic condition. A 1995 study found that only around 6% of those who developed EMS during the 1989 outbreak were well 3.6 years later. Around 21% reported improvement, but 65% said their symptoms were either unchanged or worse. Symptoms most likely to linger include muscle pain, joint pain, fatigue, and cognitive impairment.
Summary
Eosinophilia-myalgia syndrome is a chronic condition that has been linked to the use of the supplement L-tryptophan. A contaminant present in this supplement is believed to have been responsible for the 1989 outbreak. A few other related supplements have also been implicated in the disease.
People with EMS experience symptoms such as severe muscle pain, fatigue, and cognitive problems. For most people, the condition is chronic and symptoms will continue for years after onset.
Some medications such as corticosteroids may help people with EMS. Lifestyle changes can also help.
13 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.World Health Organization.Drug Alert Recall L-Tryptophan.National Organization for Rare Disorders.Eosinophilia-myalgia syndrome.American Partnership for Eosinophilic Disorders.Eosinophilia-myalgia syndrome.Ahn SW, Shin BJ, Seo SJ, Hong CK.Eosinophilia-myalgia syndrome not associated with the ingestion of nutritional supplements.Ann Dermatol. 2002;14(1):48-50.National Institutes of Health.5-HTP.Altmeyers Encyclopedia.Eosinophilic myalgie syndrome M35.8.American Partnership for Eosinophilic Diseases.Eosinophilic Fasciitis.Ratnaparkhi R, Tellez A, Piliang M, Bergfeld W.Eosinophilia versus atopy as a predictor of severe phenotypes in alopecia areata.Journal of the American Academy of Dermatology. 2016;74(5):AB135.Ibrahim O, Bergfeld WF, Piliang M.Eosinophilic Esophagitis: Another Atopy-Related Alopecia Areata Trigger?J Investig Dermatol Symp Proc. 2015 Nov;17(2):58-60. doi:10.1038/jidsymp.2015.43.Kuang FL.Approach to patients with eosinophilia.Med Clin North Am. 2020;104(1):1-14. doi:10.1016/j.mcna.2019.08.005.Martínez-Osuna P, Wallach PM, Seleznick MJ, et al.Treatment of the eosinophilia-myalgia syndrome.Semin Arthritis Rheumatism.1991;21(2):110-121). doi:10.1016/0049-0172(91)90044-zHertzman PA, Clauw DJ, Kaufman LD, et al.The eosinophilia-myalgia syndrome: status of 205 patients and results of treatment 2 years after onset.Ann Intern Med. 1995;122(11):851-5. doi:10.7326/0003-4819-122-11-199506010-00008Campbell DS, Morris PD, Silver RM.Eosinophilia-myalgia syndrome: a long-term follow-up study.South Med J. 1995;88(9):953-8. doi:10.1097/00007611-199509000-00013Additional ReadingNasef, S., & Lohr, K. Eosinophilic Fasciitis. eMedicine Journal, Vol. 3 No. 5.Sairam, S., & Lisse, J. Eosinophilia-Myalgia Syndrome. eMedicine Journal, Vol. 3 No. 1.Shiel, W. C.Eosinophilic Fasciitis (Shulman’s Syndrome). MedicineNet.
13 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.World Health Organization.Drug Alert Recall L-Tryptophan.National Organization for Rare Disorders.Eosinophilia-myalgia syndrome.American Partnership for Eosinophilic Disorders.Eosinophilia-myalgia syndrome.Ahn SW, Shin BJ, Seo SJ, Hong CK.Eosinophilia-myalgia syndrome not associated with the ingestion of nutritional supplements.Ann Dermatol. 2002;14(1):48-50.National Institutes of Health.5-HTP.Altmeyers Encyclopedia.Eosinophilic myalgie syndrome M35.8.American Partnership for Eosinophilic Diseases.Eosinophilic Fasciitis.Ratnaparkhi R, Tellez A, Piliang M, Bergfeld W.Eosinophilia versus atopy as a predictor of severe phenotypes in alopecia areata.Journal of the American Academy of Dermatology. 2016;74(5):AB135.Ibrahim O, Bergfeld WF, Piliang M.Eosinophilic Esophagitis: Another Atopy-Related Alopecia Areata Trigger?J Investig Dermatol Symp Proc. 2015 Nov;17(2):58-60. doi:10.1038/jidsymp.2015.43.Kuang FL.Approach to patients with eosinophilia.Med Clin North Am. 2020;104(1):1-14. doi:10.1016/j.mcna.2019.08.005.Martínez-Osuna P, Wallach PM, Seleznick MJ, et al.Treatment of the eosinophilia-myalgia syndrome.Semin Arthritis Rheumatism.1991;21(2):110-121). doi:10.1016/0049-0172(91)90044-zHertzman PA, Clauw DJ, Kaufman LD, et al.The eosinophilia-myalgia syndrome: status of 205 patients and results of treatment 2 years after onset.Ann Intern Med. 1995;122(11):851-5. doi:10.7326/0003-4819-122-11-199506010-00008Campbell DS, Morris PD, Silver RM.Eosinophilia-myalgia syndrome: a long-term follow-up study.South Med J. 1995;88(9):953-8. doi:10.1097/00007611-199509000-00013Additional ReadingNasef, S., & Lohr, K. Eosinophilic Fasciitis. eMedicine Journal, Vol. 3 No. 5.Sairam, S., & Lisse, J. Eosinophilia-Myalgia Syndrome. eMedicine Journal, Vol. 3 No. 1.Shiel, W. C.Eosinophilic Fasciitis (Shulman’s Syndrome). MedicineNet.
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
World Health Organization.Drug Alert Recall L-Tryptophan.National Organization for Rare Disorders.Eosinophilia-myalgia syndrome.American Partnership for Eosinophilic Disorders.Eosinophilia-myalgia syndrome.Ahn SW, Shin BJ, Seo SJ, Hong CK.Eosinophilia-myalgia syndrome not associated with the ingestion of nutritional supplements.Ann Dermatol. 2002;14(1):48-50.National Institutes of Health.5-HTP.Altmeyers Encyclopedia.Eosinophilic myalgie syndrome M35.8.American Partnership for Eosinophilic Diseases.Eosinophilic Fasciitis.Ratnaparkhi R, Tellez A, Piliang M, Bergfeld W.Eosinophilia versus atopy as a predictor of severe phenotypes in alopecia areata.Journal of the American Academy of Dermatology. 2016;74(5):AB135.Ibrahim O, Bergfeld WF, Piliang M.Eosinophilic Esophagitis: Another Atopy-Related Alopecia Areata Trigger?J Investig Dermatol Symp Proc. 2015 Nov;17(2):58-60. doi:10.1038/jidsymp.2015.43.Kuang FL.Approach to patients with eosinophilia.Med Clin North Am. 2020;104(1):1-14. doi:10.1016/j.mcna.2019.08.005.Martínez-Osuna P, Wallach PM, Seleznick MJ, et al.Treatment of the eosinophilia-myalgia syndrome.Semin Arthritis Rheumatism.1991;21(2):110-121). doi:10.1016/0049-0172(91)90044-zHertzman PA, Clauw DJ, Kaufman LD, et al.The eosinophilia-myalgia syndrome: status of 205 patients and results of treatment 2 years after onset.Ann Intern Med. 1995;122(11):851-5. doi:10.7326/0003-4819-122-11-199506010-00008Campbell DS, Morris PD, Silver RM.Eosinophilia-myalgia syndrome: a long-term follow-up study.South Med J. 1995;88(9):953-8. doi:10.1097/00007611-199509000-00013
World Health Organization.Drug Alert Recall L-Tryptophan.
National Organization for Rare Disorders.Eosinophilia-myalgia syndrome.
American Partnership for Eosinophilic Disorders.Eosinophilia-myalgia syndrome.
Ahn SW, Shin BJ, Seo SJ, Hong CK.Eosinophilia-myalgia syndrome not associated with the ingestion of nutritional supplements.Ann Dermatol. 2002;14(1):48-50.
National Institutes of Health.5-HTP.
Altmeyers Encyclopedia.Eosinophilic myalgie syndrome M35.8.
American Partnership for Eosinophilic Diseases.Eosinophilic Fasciitis.
Ratnaparkhi R, Tellez A, Piliang M, Bergfeld W.Eosinophilia versus atopy as a predictor of severe phenotypes in alopecia areata.Journal of the American Academy of Dermatology. 2016;74(5):AB135.
Ibrahim O, Bergfeld WF, Piliang M.Eosinophilic Esophagitis: Another Atopy-Related Alopecia Areata Trigger?J Investig Dermatol Symp Proc. 2015 Nov;17(2):58-60. doi:10.1038/jidsymp.2015.43.
Kuang FL.Approach to patients with eosinophilia.Med Clin North Am. 2020;104(1):1-14. doi:10.1016/j.mcna.2019.08.005.
Martínez-Osuna P, Wallach PM, Seleznick MJ, et al.Treatment of the eosinophilia-myalgia syndrome.Semin Arthritis Rheumatism.1991;21(2):110-121). doi:10.1016/0049-0172(91)90044-z
Hertzman PA, Clauw DJ, Kaufman LD, et al.The eosinophilia-myalgia syndrome: status of 205 patients and results of treatment 2 years after onset.Ann Intern Med. 1995;122(11):851-5. doi:10.7326/0003-4819-122-11-199506010-00008
Campbell DS, Morris PD, Silver RM.Eosinophilia-myalgia syndrome: a long-term follow-up study.South Med J. 1995;88(9):953-8. doi:10.1097/00007611-199509000-00013
Nasef, S., & Lohr, K. Eosinophilic Fasciitis. eMedicine Journal, Vol. 3 No. 5.Sairam, S., & Lisse, J. Eosinophilia-Myalgia Syndrome. eMedicine Journal, Vol. 3 No. 1.Shiel, W. C.Eosinophilic Fasciitis (Shulman’s Syndrome). MedicineNet.
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