Symptoms of Eosinophilia-Myalgia Syndrome (EMS)


Symptoms of EMS in its Various Stages from Acute to Chronic
Please see Bibliography at end of List



Symptoms Often Found in the Acute Phase of EMS (early months; onset)

Please remember that this list is not meant to be absolutely representative of all cases at this stage. EMS is a diverse disease which manifested in different ways in people. However, certain symptoms tended to appear frequently in the acute stage, though not in all persons. Also, it's possible other symptoms appeared in some persons at this point in the disease not listed here. I am not an expert. Please see references at end.

Blueball Eosinophilia (elevated levels of eosinophils, a type of white blood cell; sometimes was not tested, so was missed; may be possible that some persons got EMS but did not have eosinophilia)

Blueball Myalgia (muscle pain)

Blueball Swelling (edema) of the face or extremities or other areas of the body, such as the arms

Blueball Weight changes (gain followed by loss; or just loss; or perhaps just gain)

Blueball Hair loss (scalp and body hair; tended to grow back later though not always a complete return to normal)

Blueball Nodules under the skin (in some persons at this stage)

Blueball Low-grade fever (although some had higher fevers) and Malaise

Blueball Joint pain (mainly the large joints)

Blueball Skin rashes of various types (wide variety of types - see articles)

Blueball Skin changes (often similar to those found in Eosinophilic Fasciitis); thickening; scleroderma-like changes)

Blueball Lung problems (pulmonary hypertension; infiltrates in lungs; pneumonias; shortness of breath; cough; chest pain/tightness)

Blueball Neurological problems (numbness; tingling; burning sensations; shock-like sensations; headaches)

Blueball Cardiac abnormalities (heartbeat irregularities; more serious irregularities or disease in a few; etc.)

Blueball GI (gastro-intestinal) problems (nausea; upset stomach; acid reflux; etc.)

Blueball Abnormal Lab Tests (abnormal lab tests in some persons such as: elevated Aldolase; Leukocytosis; elevated Serum IgE; elevated Creatinine Kinase; elevated Erythrocyte Sedimentation Rate (ESR); abnormal Liver Function tests; possible abnormal Antinuclear Antibody test, in addition to Eosinophil count, etc.)

Blueball Other



Symptoms Often Found in Intermediate Stage of EMS (3-18 months after Onset)

Please remember that this list is not meant to be absolutely representative of all cases at this stage. EMS is a diverse disease which manifested in different ways in people. However, certain symptoms tended to appear frequently after the initial or onset stage, though not in all persons. Also, it's possible other symptoms appeared in some persons at this point in the disease not listed here. I am not an expert. Please see references at end.

Blueball Myalgia (muscle pain continued while eosinophilia usually decreased or returned to normal within 6 months or more)

Blueball Muscle cramps (spasms) of legs, feet, abdomen and other parts of the body (sometimes developed in onset phase)

Blueball Muscle weakness (became more apparent as time went on)

Blueball Numbness and other sensory/neurological abnormalities (continued from onset, some quite severe such as ascending paralysis or polyneuropathy which if it reached the diaphragm area could result in death due to paralysis of the breathing muscles; in some this severe complication took time, and in others it may have progressed quite rapidly - some persons became quadriplegics or partially paralyzed - of those some died in the first months and years - or later - and some have survived though perhaps have never been able to walk)

Blueball Cognitive changes began to appear (difficulty concentrating, finding words; short-term memory loss; etc.)

Blueball Joint pain (often continued from onset stage)

Blueball Fatigue became quite pronounced (profound) in many with EMS at this time, if not earlier

Blueball Skin changes (continued in many from onset stage, such as scleroderma-like changes)

Blueball Cough and other pulmonary symptoms (continued into next stage after onset in many persons; more serious or rare pulmonary complications included pulmonary hypertension; severe damage requiring a wait for a lung transplant; life-threatening pneumonias; embolisms; etc.)

Blueball Depression and/or anxiety (caused by having a chronic illness, though some may have had pre-existing conditions)

Blueball Cardiac complications (cardiomyopathy in rare instances; other heart problems)

Blueball Visual changes (dry eyes; tearing; loss of vision; other more serious conditions)

Blueball Migraines/headaches (continued - or developed for first time in some)

Blueball GI problems (continued in many or developed, such as acid reflux disease; trouble swallowing; esophagus problems, etc.)

Blueball Hearing changes (reported by some, such as tinnitus or ear ringing)

Blueball Facial pain/Other pain (reported in some - such as TMJ-like disorders or rarely: trigeminal neuralgia; etc.)

Blueball Other (such as a few continuing abnormal lab tests)




Symptoms/Complications/New Diagnoses in Chronic Phase (about 18 months to present)

Please remember that this list is not meant to be absolutely representative of all cases at this stage. EMS is a diverse disease which manifested in different ways in people. However, certain symptoms tended to appear frequently after the acute and intermediate phases, though not in all persons. Also, it's possible other symptoms or secondary conditions have appeared in some persons at this point in the disease not listed here. As well, some of these diagnoses may have occurred earlier than 18 months in some persons. I am not an expert. Please see references at end.

Blueball Fibromyalgia (a condition with Tender Points and other symptoms)

Blueball Chronic Fatigue Syndrome (sometimes called CFIDS)

Blueball Both FM and CFIDS (some diagnosed with both)

Blueball Hypothyroidism (low thyroid function)

Blueball More pronounced Cognitive Dysfunction (neuro-cognitive dysfunction)

Blueball Sensitivity to odors, chemicals, etc. (may have developed earlier in some; Multiple Chemical Sensitivity)

Blueball Dry Eye Syndrome (generally well-established in many by this time; dry mouth)

Blueball Sjogren's Syndrome (autoimmune disease secondary to EMS involving dry eyes and many other symptoms)

Blueball Menstrual or Reproductive Problems (various disorders and urinary problems)

Blueball Emerging Dental Disorders (pain in gums; loose teeth; gum loss; infections; autoimmune-like changes)

Blueball Psychiatric Disorders (depression; anxiety of various types including panic disorder and post traumatic stress; other)

Blueball Myofascial Pain Syndrome (or sometimes now called Chronic Myofascial Pain or CMP; Trigger Point pain)

Blueball TMJ; TMD-type disorders of face and jaws

Blueball Fairly high incidence of Diabetes (type 2) (but by no means suggesting it's an expected EMS-related development)

Blueball A tendency to higher cholesterol levels or difficulty in lowering with diet (but by no means definitely EMS-related)

Blueball Cardiac disorders (of various types; also high blood pressure; strokes; etc - hard to know how much EMS has played into accelerating development of these disorders, but undoubtedly in some persons it has played role by virtue of poor diet, inactivity due to illness, fibrosis, elevated sugar levels, diabetes, etc.)

Blueball Gastro-Esophageal Reflux Disease; Swallowing problems; Esophagus pain or problems; Lower GI problems

Blueball Pulmonary Diseases/Disorders (problems with breathing; pneumonias; asthma; recurrent bronchitis, etc.)

Blueball Fatty Tumors; Desmoid tumors (benign and rare in those with EMS); one or two cases of unusual cancerous tumors

Blueball Scleroderma-type skin disease; some actual scleroderma diagnoses (relatively few but total not known); scleroderma skin changes are by no means found in all with EMS - maybe 1/4 or 1/3 have it to some degree; tight skin)

Blueball Liver disorders (rarely - but autoimmune liver disease has been reported as well as some other liver conditions)

Blueball Gall Bladder Disease (believed to be a slightly greater incidence; a few cases on record of eosinophils in gall bladder)

Blueball Vision Problems (tearing; red eyes; problems with reading or watching TV; changed vision; optic neuritis; etc.)

Blueball Other (EMS is diverse so there could be many other things some have related to having had EMS)

Please remember that many persons with EMS have relatively few complaints today and live full lives without much pain. Some are in remission or have few symptoms of EMS. A few believe they are actually cured or free of EMS. But many (we don't know what percentage) continue to suffer from at least several problems or secondary conditions to EMS involving usually several body systems. Treatment is by symptoms, and what works for one does not necessarily work for another. Always consult your own physician for advice. Please do not read the above list of possible complications and assume you will have - for instance - gall bladder disease related to having had EMS - it has been associated with EMS in some cases only.


Bibliography (partial)

Eosinophilia-Myalgia Syndrome (lab tests, acute symptoms, etc.)

FDA/CFSAN "Dear Colleague" letter on L-Tryptophan and Eosinophilia-Myalgia Syndrome

Eosinophilic Fasciitis & Eosinophilia-Myalgia Syndrome (symptoms of each)

Unintentional Provings - Dr. P. Souk-Aloun (hard to read but lists three stages)

Current Trends Eosinophilia-Myalgia Syndrome: Follow-up Survey of Patients

Epidemiologic Notes and Reports Clinical Spectrum of Eosinophilia-Myalgia Syndrome

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This is the page that I found that fits the symptoms that seem to fit why he diagnosed me with this better then what some of the others say. I don't understand a lot of what causes it.

I wrote a note and somehow I took it out and got the symptoms in of the EM.

Marla, I wanted to say I was glad that your test turned out ok for your heart and that the SCS does what you want it to.

Tayla, He didn't take away the Fibro diagnoses he just added the EM into the mix.

I hope you are doing ok. You disappeared for awhile and I was worried about you. Glad to see you back.

Ada

Hi Ada,

I knew he didn't take the Fibro diagnosis away I was wondering what specific thing it was that decided him on this diagnosis as there is not one specific diagnostic marker for EM and the symptoms you listed are similar for most myalgic diseases.
I would be asking him to be specific as to lump you with this diagnosis and give you more to be concerned about seems a bit stiff.
Cheers Tayla

PS- Have been absent for a multitude of reasons

Thank you Ada, I am anxious to try it. I watched the videos they sent home with me
to watch as well as researched it extensively and believe it will be an added bonus to me.
Of course I am nervous about it, but I think that is pretty normal. Isn't it? hahahahaa
I will let you know when they call me to let me know when I can do the trial.

Love, Peace & Blessings,
Marla