Major Complaints 15+ Years after Onset of Eosinophilia-Myalgia Syndrome (EMS)



Some persons with EMS (100 or more) got sick prior to The Epidemic of 1989-1990. However, the vast majority accounted for became sick during The Epidemic. The purpose of this Online Poll was to ask persons with EMS diagnoses what their major complaint (physical, social, etc.) is at this point in time: 15+ years after onset of EMS. If possible, persons queried were to list the most difficult aspect of living with EMS now in late 2004. However, some people listed several complaints, and a few listed more than several.

It is my hope that this unscientific poll of 32 persons, both men and women, will help those with EMS, as well as others, to understand what it is like now for those who live day to day with a complex and often devastating disease. That EMS impacts many people to the negative degree it does is remarkable after the passage of 15+ years. This is because some physicians believed that EMS would go away completely after a while; in fact, many doctors to this day tell people with EMS that they no longer have the disease, that it is over since they no longer have Eosinophilia, and that they "just" have Fibromyalgia. A lot of ignorance exists among the medical profession about EMS, and I hope that polls such as this one help educate the public and medical profession.

This poll was conducted online from November 15 through November 24, 2004.



By Marylin Faith Rumph


Poll Results

Question: Fifteen years ago the EMS Epidemic occurred. Some of you were pre-epidemic cases, so you have dealt with EMS longer than 15 years. After all these years, what is the most difficult aspect of life with EMS for you (physical, emotional, social, legal, or any other "thing" that applies)?


Answers of the 32 Respondents

#1: Ongoing afternoon fatigue, muscle aches/stiffness. Social situations continue to cause stress due to cognitive issues resulting in a day or two of minor relapse ... occasionally ... a sizable relapse will occur.

#2: Muscle weakness and spasms.

#3: The right combination of pain medications to allow me to be productive in daily life.

#4: Being at the mercy of Doctors who do not have any knowledge of EMS and do not want to learn.

#5: The most difficult aspect of living with EMS is a sleep disorder that requires me to take medicines to sleep, not having enough energy, and that there may be a consequence to trying to do activities that I enjoy.

#6: Most difficult (was) getting a doctor to believe I have EMS (I met CDC criteria and was diagnosed at U of M and confirmed at Mayo) and its terrible impact on my health now.

#7: The most difficult aspect of dealing with EMS over the years has been getting family, friends and healthcare professionals to understand the severity and complexity of the disease. There are few answers to our situation: Family and friends have developed a deaf ear to my plight. Healthcare professionals tend to have the attitude that "You aren't bleeding, so what's your problem?"

#8: The indescribable, overpowering and debilitating fatigue!

#9: I believe that for me the most difficult aspect of life with EMS is managing chronic pain and fatigue.

#10: Appearing healthy with progressive pain, depression and cognitive dysfunction.

#11: Facing the aging process with the variety of problems imposed by EMS.

#12: Pain.

#13: My still burning skin, especially on my legs, my chronic fatigue, and most of all, my prednisone-induced weight gain - (and the prednisone didn't really help me). I've been suffering since 1987.

#14: The most difficult aspect of EMS is continually feeling bad. The symptoms make it difficult to live a normal life. Never feel really well or free of pain.

#15: Daily pain, still get bad muscle and joint pain; not able to sleep; bouts of depression; CHF (congestive heart failure), diabetes, dry eyes, and I still have some skin problems on lower legs as well as leg pain; lack of energy.

#16: Finding the right combination of medications to treat chronic pain.

#17: The most difficult thing about EMS for me is the severity of a degenerative spine at multiple levels.

#18: The physical and mental stress that I can't deal with anymore since EMS. Anxiety and depression are the most painful things I deal with on a daily basis.

#19: The unpredictable flareups of severe, disabling muscle fatigue which last days to weeks.

#20: Chronic leg pain.

#21: Frustration with the limitations.

#22: Getting frustrated by having new physical conditions cropping up and going through the long process of a diagnosis and finding treatment.

#23: The most devastating effect is chronic fatigue.

#24: Not being able to sleep well and never feeling rested keeps me from doing a whole lot of things I'd like to do; Feet and legs hurting constantly, and much, much more when I'm on them any length of time at all, like walking from the parking lot into a building, maybe 30-50 yards - keeps me from exercising, and actually even makes me angry that lack of exercise is dangerous to my health.

#25: That I cannot work full time to earn a living in the field I studied for (I can't be a full-time lawyer).

#26: Most difficult aspect of EMS for me: lack of activity.

#27: Dealing with the pain, yes.... but frustration with medical personnel is high on my list.

#28: I've had to give up the work that I love (which is composing music) and completely leave my career behind, due to continuing malfunction of body parts (including arms, shoulders, hands, legs, feet, ears and hearing, etc. at different times) and constant pain.

#29: Pain! Nerve ending pain that intensifies with physical and/or mental stress of normal life. Extremely restrictive.

#30: EMS is not recognized in any way to the extent it should be.

#31: Worsening FMS and CFS causing constant pain and difficulty in walking; trouble sleeping and having nightmares and awakening with anxiety attacks; daytime anxiety attacks; trouble in social situations; return of elevated eosinophil count; new diagnoses or problems including high blood pressure, cataracts, high cholesterol and sugar, partial blockage of artery in right calf, unexplained polyps inside lower lip and dry macular degeneration of eyes.

#32: Living with unfulfilled dreams. Still having the passion, but not the endurance to see anything through and the inability to accept it.

faith_rumph@yahoo.com If you have questions, please e-mail me.
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