Autoimmune Diseases & Eosinophilia-Myalgia Syndrome

Twenty-nine (29) persons with EMS participated in this Survey in the autumn of 2006. Since I am not a physician, I decided to use a list of autoimmune diseases from a list that appears on the Web site of a reputable non-profit, The American Autoimmune Related Diseases Association. To see the entire list of diseases, readers can go to this page on the Web site: AARDA - then click on "Research Reports" near the bottom of the menu, and then click on "List of Autoimmune Related Diseases" in the list of reports.

Of course, although there are many rare and unusual diseases on the AARDA list of autoimmune diseases, I am certain that the list is not 100% complete. For instance, I feel that EMS should be on the list since most researchers agree that EMS is an immune-mediated disorder; however, EMS is not on the list because no researcher or group of persons with EMS have gone through the protocol required to get it on the AARDA list. One can't, after all, just write to them and tell them to put a disease on the list. They require proof and a process. While doing this survey, I came across at least one (1) disease that I am certain after research is autoimmune that was not on the AARDA list, so I included it, even though surgery cured the condition in the patient. There are other diseases that may not be strictly proved yet to be autoimmune, but because of their close relationship with so many other autoimmune diseases, they do appear on the AARDA list. The two the organization cited are Fibromyalgia and Chronic Fatigue Syndrome. (I think that many people (patients) believe one or both diseases are autoimmune in nature although numerous professionals in the medical field want more study on these two diseases.)

What is an autoimmune disease or disorder? Some of us can name examples like rheumatoid arthritis, lupus, and scleroderma. But what's the definition? If you search various medical dictionaries or medical Web sites, you can find similar definitions. Here are two sites you might want to read when you have time: Autoimmune disease definition - Medical Dictionary definitions and Autoimmune Disease Definition We all have an understanding that autoimmune diseases involve something gone awry with our immune system due to known or unknown causes. Our immune system might attack one organ or many organs because of the results of the immune system's having become hypersensitive to normal things in the environment or because of its efforts to protect us from other problems we encounter like toxins or drugs we have taken.


Autoimmunity is an extremely complex subject. At the end of the entire report, I will list links to sources for further information and study for those who may have questions I am not able to answer and do not answer in this report.

When I was compiling this report on EMS and autoimmune diseases, I was looking for several things:

Do most of the EMS respondents have other autoimmune conditions? The answer is YES. Respondents range from 0-13 for totals of other autoimmune diseases/conditions.

Are there autoimmune diseases that stand out or predominate among those with EMS? The answer is YES. Half a dozen or so diseases clearly top the list of diseases/disorders.

Are the respondents well-informed about their autoimmune diagnoses? The majority rate very high on this. Although nobody, I feel sure, had heard of all the diseases on the AARDA list, respondents generally are quite clear on their own diagnoses. There do exist several disorders, however, that cause some confusion. I will mention those problems later on.

More information and stats will be provided following the list of reported diseases that follows.

Fibromyalgia - 21 respondents or 72% of the 29 respondents; almost all were post-EMS diagnoses; all women.

Peripheral Neuropathy - 14 respondents or 48%; post-EMS diagnoses; women and at least one man.

Chronic Fatigue Syndrome - 11 respondents or 38%; post-EMS diagnoses for all those who gave a date; women.

Eosinophilic Fasciitis - 10 respondents or 34%; EF is a disease that was a first diagnosis for many with EMS, obviously, and for some the diagnosis was later dropped and changed to EMS only; for others, aspects of EF remained or remain to this day along with EMS, in the opinions of some respondents; all those responding seemed to be quite familiar with the disease; women and at least one man in this group.

Restless Legs Syndrome - 10 respondents or 34%; mostly post-EMS diagnoses; only one was clearly pre-EMS; all women in this group.

Osteoarthritis - 9 respondents or 31%; mostly post-EMS diagnoses - most recent diagnosis in 2006; all women.

Allergic Rhinitis - 8 respondents or 28%; 5 diagnoses clearly pre-EMS and 2 clearly post-EMS; one unclear; at least one man in this group of respondents.

Allergic Asthma - 6 respondents or 21%; most diagnoses occurred post-EMS or during onset; at least one man in this group.

Psoriasis - 5 persons or 17%; 2 persons indicated diagnoses going back to childhood; one person clearly indicated a post-EMS diagnosis; another seemed unsure but thought it was post-EMS; one person gave no date; all women.

Sjogren's Syndrome - 5 persons or 17%; post-EMS, most likely for all, but several didn't indicate a date; all women in this group.

Hashimoto's Disease - 5 persons or 17%; about half pre-EMS and post-EMS, though some responses were not clear as to date; also, others noted they have hypothyroidism or other forms of thyroid disease; I think people are not clear as to differences about the various forms of thyroid disease and doctors could do a better job of telling patients what it is exactly that they do have; I encourage all with thyroid diagnoses to ask your doctors exactly what kind of thyroid disease you have; all respondents were women.

Raynaud's Phenomenon - 4 persons or 14%; all seem to be post-EMS; all women.

Scleroderma - 4 persons or 14%; post-EMS diagnoses; women and one man; for at least one person this was a preliminary diagnosis before EMS was established; it seems that all 4 persons feel that they continue to have aspects of scleroderma-like disease.

Vasculitis - 4 persons or 14%; post-EMS - one person is being tested for this now; all women.

Axonal & Neuronal Neuropathies - 3 persons or 10%; post-EMS diagnoses; women and one man; I am not certain that all respondents understand what this condition is and believe that more persons might have it than say they do. Doctors could do a better job of explaining what kind of neuropathies patients with EMS have.

Mixed Connective Tissue Disease - 2 persons or 7%; post-EMS; all women. There seemed some confusion here and there about the connective tissue disease diagnoses - those are not included in this count. But I think some with EMS feel they have been told they have connective tissue diseases but do not know what, for sure, or whether it's a separate disease from EMS. These 2 respondents seem sure about their diagnoses.

Demyelinating Neuropathies - 2 persons or 7%; probably both post-EMS; women.

Vitiligo - 2 persons or 7%; one person pre-EMS and one person post-EMS; one woman and one man.

Alopecia Areata - 2 persons or 7%; one person during acute phase of EMS only; 2nd person since EMS; women; This is another disease that I think lends itself to some confusion since I'm not sure that all people know the difference between it and Alopecia. Doctors could do a better job of explanation to patients.


All of the following autoimmune diseases/disorders had ONE respondent each: 3% of total respondents.

Autoimmune Hepatitis - 1 person or 3%; woman post-EMS.

Autoimmune Thyroid Disease - woman post-EMS.

Ankylosing Spondylitis - pre-EMS; woman.

Autoimmune Inner Ear Disease - post-EMS; woman; person not diagnosed yet but suspected.

Hyperparathyroidism - One person listed this, and after I researched it, I concluded it is an autoimmune or autoimmune-related disorder, even though it's not on the AARDA list. In the case of the respondent, the condition completely resolved after removal of a benign tumor.

Lyme Disease - 1995 (not sure of exact year); woman.

Myositis - 1990; woman.

Psoriatic Arthritis - woman.

Primary Biliary Cirrhosis - woman.

Thrombocytopenic Purpura (TTP) - 1989; woman.

Cardiomyopathy - post-EMS, I believe; woman.

Sarcoidosis (of liver) - 1991 post-EMS; woman; was attributed to usage of a drug for pain and resolved once the drug was stopped; diagnosis was confirmed by liver biopsy and lab tests.

Endometriosis - first diagnosed 1994; reproductive disease of women; stage 4 disease (worst).

Polymyositis - diagnosis fall 1989; a pre-EMS diagnosis - not sure if it's a valid diagnosis now; woman.

Rheumatic Fever - pre-EMS; woman.

Postmyocardial Infarction Syndrome - post-EMS; woman.

Chronic Inflammatory Demyelinating Polyneuropathy - post-EMS; woman.

Crohn's Disease - post-EMS; woman.

Lichen Planus - post-EMS; woman.

Undifferentiated Connective Tissue Disease - post-EMS; woman.

Giant Cell Arteritis/Temporal Arteritis - diagnosis Fall 1989; woman thinks it might have been a misdiagnosis because of the timing as it was later questioned by doctors.

Celiac Sprue - Woman has aspects of this disease and positive blood test for gluten sensitivity but has not yet been diagnosed with celiac sprue, for sure. She states that gluten sensitivity is related to autoimmune diseases.

Narcolepsy - Woman has aspects of this disease though not yet diagnosed; does have sleep apnea.

Ulcerative Colitis - post-EMS; woman.

Antiphospholipid Syndrome - pre-EMS diagnosis; woman.

Sperm & Testicular Autoimmunity - post-EMS; man. Also has Peyronie's Syndrome; doctors seem a little hesitant about the first diagnosis.

One person mentioned having polyneuropathy along with peripheral neuropathy, but did not give the exact name of a disease on the list. Maybe the person can clarify this in the future for me.

Other diseases/conditions mentioned that are not autoimmune in and of themselves, so far as I know, and do not appear on the AARDA list, are: Irritable Bowel Syndrome (1 person); Trigeminal Neuralgia (1 person); and Osteoporosis (1 person who was not sure if it's related to osteoarthritis).

Several other people mentioned that they think they have an "unknown" connective tissue disease (the doctor hasn't told them what type or they don't remember the name). I believe 2 persons fell into this category. They said they just didn't know which type of connective tissue disease they have but felt sure they'd been diagnosed with one or the other that appeared on the AARDA list. At least one person mentioned having some kind of "fasciitis."

I also think that several persons may have forgotten to list one or more of their autoimmune diseases, based upon my personal knowledge of those respondents.

The AARDA list contained 139 diseases/disorders. Twenty-eight (28) EMS respondents named 43 of those as diseases they have.

Of the 29 respondents, 26 were women, and 3 were men. In other words about 10% of respondents were men and 90% were women. Various studies say that from 75% to 84% of people with EMS are women, so this Survey was pretty close to the highest figure of 84% for women participating. If we'd had two more men participating and the same number of women, it would have been closer to the 84% statistic for women (and 16% for men).

Only one (1) person of 29 respondents reported having none (0) of the diseases on the AARDA list, and that was one of the men. Generally speaking, the 3 men reported fewer autoimmune diseases than did the women. The highest number reported by any man was five (5) compared to 13 for a woman. This is in keeping with reports of the medical community that women get autoimmune diseases more frequently than do men. Doctors say that approximately 75% of those who get autoimmune diseases are women and that autoimmune diseases are the 4th largest cause of disability among women. Also, about 8.5 million persons in the USA have autoimmune diseases. from: Statistics about Autoimmune diseases - WrongDiagnosis.com

The range of autoimmune diseases reported by the 29 respondents was 0-13 diseases/disorders from the AARDA list. One person reported having 0 diseases. One person reported 13 diseases. Summary:

0 diseases reported - 1 person (male)
1 disease reported - 2 persons (female)
2 diseases reported - 5 persons (female)
3 diseases reported - 3 persons (1 male, 2 females)
4 diseases reported - 3 persons (female)
5 diseases reported - 4 persons (3 females, 1 male)
6 diseases reported - 2 persons (female)
7 diseases reported - 1 person (female)
8 diseases reported - 0
9 diseases reported - 3 persons (female)
10 diseases reported - 1 person (female)
11 diseases reported - 3 persons (female)
12 diseases reported - 0
13 diseases reported - 1 person (female)

Since I know a lot of these persons rather well from years of contact, I can vouch that truthfulness of their reporting is not even in question for me. People with EMS really can and do have many autoimmune diseases often, but not always.

The top seven (7) reported diseases are Fibromyalgia (21); Peripheral Neuropathy (14); Chronic Fatigue Syndrome (11); Eosinophilic Fasciitis or EF-like disease aspects (10); Restless Legs Syndrome (10); Osteoarthritis (9) and Allergic Rhinitis (8). All these diseases rated 28% or higher with Fibromyalgia being reported in just over 72% of respondents. It's important to bear in mind why Fibromyalgia might be diagnosed more often in those with EMS than any other autoimmune related disease in this survey. Here are some possible reasons: 1) People with EMS really do all have a greater propensity to develop secondary Fibromyalgia to EMS (except, of course, for those who had pre-existing FMS). 2) Doctors may be more familiar with Fibromyalgia than with EMS and more likely to be comfortable with labeling EMS patients with a Fibromyalgia diagnosis, even in some patients who don't really have Fibromyalgia. 3) Sometimes insurance coverage of services for EMS patients, such as physical therapy, is easier to obtain and get covered for them than for a rare disease like EMS - in fact, this very thing happened to me one time when one of my doctors put down Fibromyalgia instead of EMS for the diagnosis and reason for physical therapy although he certainly did and does believe in my EMS diagnosis. 4) So much of the medical literature, especially in the rheumatology field, cites EMS patients as being practically indistinguishable from patients with Fibromyalgia; therefore, doctors may feel that, at some point, it's best to use a Fibromyalgia diagnosis than an EMS one whether or not the person really has Fibromyalgia. ----- Personally, I have no way of knowing for sure what the real reasons are, but I suspect that there might be some over-diagnosis of Fibromyalgia in EMS patients. I will admit I cannot be sure, and it would be hard for anyone to be absolutely sure. As many persons in the medical field believe, it may not matter a lot to many patients with EMS when it comes to their care at this time. However, it does matter when it comes to the accuracy of history and the fact of what was the primary disease.

Readers should remember that these diseases reported are all autoimmune diseases. NOT counted are OTHER diseases that respondents may have or may have had. Other diseases known by me that some of the respondents have or have had include high blood pressure, depression, anxiety disorders, migraine headaches, sleep disorders, type 2 diabetes, stroke, heart attack, various types of cancer, various skin disorders, vision disorders, ear disorders, carpal tunnel syndrome, tendonitis, fractures, osteoporosis, TMJ or TMD disorders, dental diseases, etc. Don't forget to add in EMS as another autoimmune disease.

LINKS to Resources:

About Prevalence and Incidence Statistics - WrongDiagnosis.com

Glossary for Autoimmune diseases - WrongDiagnosis.com

Autoimmune Disease Publications at the National Institute of Allergy and Infec

AUTOIMMUNE DISEASE IN WOMEN - The Facts

Autoimmunity AARDA American Autoimmune Related Diseases Association

MedlinePlus: Autoimmune Diseases

Autoimmune Diseases

Comments or Questions: Email Faith at faith_rumph@yahoo.com

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