Prevalence of Several Disorders Commonly Found in Fibromyalgia Patients Among Eosinophilia-Myalgia Syndrome Patients:

Introduction to Survey Results & Defense of the Integrity of Chronic EMS Diagnosis
And Acknowledgment of Secondary Conditions to EMS and of Conditions not Related to EMS


A person from New Zealand told me about a doctoral candidate in that country doing questionnaires of people with various eosinophilic-related diseases. The same lady then submitted to me some general questions related to back and spinal problems, rotator cuff problems, carpal tunnel syndrome, and the presence or absence of trigger points - as well as whether or not there had been a diagnosis of Fibromyalgia.

I decided to adjust the general questions to better suit my own idea of what I'd like to learn from a Survey, but I retained the outline of what had been given to me. I added questions in some cases about the effectiveness of various surgeries; I added "tender points" to "trigger points" because it seems to me that they are used to describe almost the same symptoms more now than in the past, although there do remain technical differences between them; and I added the diagnosis of Myofascial Pain Syndrome (sometimes known by other names) which can be present in people with Fibromyalgia or occur alone or with other diseases. For instance, MPS (myofascial pain syndrome) can occur in persons with Eosinophilia-Myalgia Syndrome with or without a diagnosis of Fibromyalgia.

Fibromyalgia in persons with EMS is most often a secondary diagnosis to EMS, or FM may have preceded getting EMS. A lot of persons with EMS do not have diagnoses of Fibromyalgia or Myofascial Pain Syndrome, but as one person pointed out to me, more and more doctors "seem" to be telling EMS patients that they have Fibromyalgia instead of referring strictly to their medical diagnosis as EMS.

Apparently, doctors either really believe that more and more EMS patients have "active" FM (Fibromyalgia) instead of "active" EMS, or they are more comfortable treating FM than a disease called EMS that is so rare compared to FM. And, of course, the treatment of FM is one that is more familiar territory to doctors.

[For the record, I am not a doctor - I'm just a person with EMS, but I do not agree that EMS is "inactive" or "gone" because the eosinophil count is normal, although that is what some doctors tell patients. Almost all persons with EMS have their eosinophil counts return to normal, yet chronic disease exists in most of the EMS patients whom I know. That is my opinion and observation. I believe you can have "chronic" EMS and have other conditions/diseases related or not to EMS. Some of my medical disorders besides EMS are high blood pressure, a TMJ-like disorder, Fibromyalgia, dry eye syndrome, and general anxiety. I believe a few I named are secondary to EMS, but the others are not related to having EMS.]

Forty-six persons responded to the Survey, and their answers are used in my tabulations. All persons surveyed have diagnoses of EMS from qualified doctors with the exception of several persons. I invited one Canadian person to participate who has Gleich Syndrome, an eosinophilic disease so rare that only about 20 cases are known in the world. The exact diagnosis of another person or two might also be called EMS-like rather than EMS. I used my discretion. For all practical purposes the survey is of those with diagnoses of EMS.

Readers should understand that I don't know the name of the doctoral candidate in New Zealand, nor the name of her thesis, nor what the purpose in surveying various eosinophilic-related diseases is. I might dare to guess that the person is trying to discover something about known causes of Fibromyalgia in these eosinophilic diseases and the prevalence of these causes and FM in the various eosinophilic-related disorders, but I am not sure.

After doing some study, I learned that rotator cuff problems can lead to Fibromyalgia as a secondary problem. People with back disorders can develop Fibromyalgia as a secondary disorder. So that is why I theorized what I wrote in the previous paragraph. But in the world of medicine, doctors are still arguing and discussing exactly what Fibromyalgia is and sometimes whether it's even real. I don't know what FM really is, but I personally think it's a kind of syndrome that is distinct from EMS. To me it seems like a condition that has a lot to do with prolonged muscle tension, perhaps enforced inactivity because of other diseases, de-conditioning over time, and probably chemical changes that occur in the brain.

Also, Eosinophilia-Myalgia Syndrome is NOT the same as Fibromyalgia. Doctors, nurses, patients, and anyone else should realize that they are not the same. Too often we EMS patients feel disrespected by various medical professionals and others who out of ignorance or carelessness tell us there is no difference or that EMS no longer existed once the Eosinophil count returned to normal. Such persons are wrong.

They may firmly believe what they say for whatever reasons. But it is wrong. EMS is an ongoing chronic disease in most cases I know about (though it varies from mild or minimal disease to quite severe). Like any autoimmune disease, it tends to be more active at times than at other times, and its general severity differs a lot from person to person. Some with EMS do have minimal or nearly inactive EMS while others are still coming down with conditions/diseases that have an obvious known (written about) connection to EMS.

A few of the secondary disorders to EMS include Fibromyalgia, Chronic Fatigue Syndrome, Restless Legs Syndrome, hypothyroidism, carpal tunnel syndrome, and others, some very serious and debilitating, even life-threatening. The "age factor" is obvious: As any group ages, more and more things will go wrong with health. But I don't claim that all diseases associated with aging have a relationship to EMS. But some might occur more often due to the fact EMS limits the ability to exercise and function normally.

In conclusion, EMS for most people is a chronic systemic autoimmune-mediated disease that varies a lot from person to person in its manifestations: having secondary FM (or not) is one of those differences. However, treatment of EMS is similar in certain patients to persons who have FM since quite a few of those with EMS do have FM diagnoses. But the disease EMS is not the same as FM. Here is one example of a difference. How many with Fibromyalgia have the skin scarring that up to 1/3 of those with EMS have because of the scleroderma-like skin disease that about a third of those with EMS developed? By skin scarring I mean irreversible skin damage where the skin apparently lost the subcutaneous fat below the outer layer and is tighter than normal, taut, and is similar to hide-bound skin. That is what I have on my hands, feet, and some other body areas. I could be wrong but I don't think you will find much of that in patients with Fibromyalgia.

At the end of the following Survey results, you will find some Web sites you can visit on FM, MPS, trigger points, etc.

Back/Spinal Questions


Question 1: Have you ever sustained an injury to your back or spine?

No - 43% (20 of 46 respondents)
Yes - 57% (26 of 46 respondents)


Question 2: Have you ever had back or spinal surgery?

No - 87% (40 of 46 respondents)
Yes - 13% (6 of 46 respondents)


Question 3: Have you ever had spinal injections? (steroid, etc.)

No - 65% (30 of 46 respondents)
Yes - 35% (16 of 46 respondents)


Question 4-a: Have you had one or more myelograms performed?

No - 83% (38 of 46 respondents)
Yes - 17% (8 of 46 respondents)


Question 4-b: If you answered "yes", how many have you had and when?

"They were done in the 1990s in NYC. I can't remember the exact years, but I had 3 of them."
"1974 - 5 or 7 of them."
"One in 2006."
"It was 40+ years ago. I had a reaction to the dye."
"One about 1980."
"About 2004." [Person put a question mark after answering "yes" as if they were not entirely sure.]
"Three lumbar; 2 higher cervical." No date given that I saw. Maybe I will get a date later.
"One in late 1970s."


Question 5-a: Do you NOW have sciatica? (I decided to make the question state "now" for several reasons.)

No - 76% (35 of 46 respondents)
Yes - 22% (10 of 46 respondents)
"Unknown" as reply - 2% (1 of 46 respondents)

Question 5-b: If you answered "yes", how often do you have the pain?

"Daily and will soon undergo a procedure called X-Stop for spinal stenosis."
"A couple times or more a month."
"At least 2-3 times a month."
"Severe and daily."
"Pain is constant but varies according to activity. More localized in the hip than extending down the leg."
"Sometimes."
"Not that often, but occasionally."
"Sometimes."
"About 4 times a week; very random. I use rolling on a tennis ball."
"Constant sciatic pain like the nerve is too short. If I try to stretch or bend too much I get a flareup in the nerve and have the sharp sciatic pain that lasts about a week. It helps to sit with my legs bent and my feet on a short (child's) stool to keep the area from having pressure on it."

Rotator Cuff


Question 1: Have you had a rotator cuff problem?

No - 76% (35 of 46 respondents)
Yes - 22% (10 of 46 respondents)
"None Diagnosed" - 2% (1 of 46 respondents)

Question 2: If you answered "yes", have you had surgery?

No - 70% (7 of 10 respondents who answered "yes")
Yes - 30% (3 of 10 respondents who answered "yes")

Question 3: Did the surgery help your rotator cuff problem? Answer "Yes"; "No"; "Mostly"; Some"; etc.

"Yes, it helped."
"Mostly."
"Yes on left, no on right."

Carpal Tunnel Syndrome


Question 1: Have you had carpal tunnel syndrome?

No - 61% (28 of 46 respondents)
Yes - 37% (17 of 46 respondents)
"Maybe" - 2% (1 of 46 respondents)

Question 2: Have you had surgery for carpal tunnel syndrome?

No - 76 % (13 of 17 who answered "yes" for carpal tunnel syndrome)
Yes - 24% (4 of 17 who answered "yes" for carpal tunnel syndrome)

Question 3: Did the surgery help the condition? Answer "yes"; "no"; "somewhat"; "a lot"; etc.

"No, lost 6% usage in each hand (had surgery in both hands.)
"Some."
"Yes."
"Yes."

Tender Points or Trigger Points; Diagnoses of Fibromyalgia and/or Myofascial Pain Syndrome


Question 1: Have you been told by a doctor that you have tender points and/or trigger points?

No - 33% (15 of 46 respondents)
Yes - 65% (30 of 46 respondents)
"Unsure" - 2% (1 of 46 respondents)

Question 2: Do you have a diagnosis of Fibromyalgia and/or Myofascial Pain Syndrome? Please answer FM, MPS, etc.

Diagnosis of FM only - 46% (21 of 46 respondents) **This includes one person who has not been told she has trigger points or tender points but who has been told she has Fibromyalgia secondary to EMS.
Diagnosis of MPS but not FM - 2% (1 of 46 respondents)
Diagnosis of FM and MPS - 11% (5 of 46 respondents)
Diagnosed with Trigger Points/Tender Points but not diagnosed with FM or MPS - 8% (4 of 46 respondents)
Not diagnosed with either condition by a doctor - 33% (15 of 46 respondents)

Web sites you may like to read:

Myofascial Pain Syndrome - Mayo Clinic

Myofascial Pain Syndrome and Fibromyalgia

Fibromyalgia - University of Maryland Medical Center

Carpal Tunnel Syndrome - NIH

Rotator Cuff Injury - Mayo Clinic

Back Pain - WebMD

Sciatica - Mayo Clinic

Fibromyalgia Trigger Points (Are trigger points the same as tender points - gets into this and has a link to an article.)

Send email to Faith at: faith_rumph@yahoo.com

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