Status of Pain in 37 Persons with
Eosinophilia-Myalgia Syndrome (EMS)

The survey I designed in early August 2002 consisted of eight (8) questions about pain experienced by persons who have EMS. Several questions allowed a few written comments, kept to a minimum, but most questions relied upon simple replies involving choosing among several choices or answering "yes" or "no." Respondents live in all sections of the United States and two provinces of Canada.

Objectives:

First and foremost - to help others with EMS through sharing the results of the survey

Secondarily, to allow physicians and interested other medical professionals a chance to see what actually helps a group of patients with their pain, what does not help, what makes some worse, etc., with the hope that sharing this information might help doctors and patients come up with ideas for treatment that they have not tried where present therapies are not working satisfactorily


How the Survey was Disseminated: The short survey was disseminated beginning August 11, 2002, and ended on October 1, 2002. The survey was sent to persons via the Internet and returned to me via the Internet; in addition, five (5) persons returned the survey via postal mail after I mailed the survey to them in the mail. Not all persons who were given an opportunity to participate, either via the U.S. mail or via the Internet, chose to do so. An effort was made to disseminate the petition to people known by me to have legitimate EMS diagnoses. In many cases, I have known the persons who participated via e-mail or postal mail for several years or longer and have met some in person or talked to them on the phone. Few respondents were relatively unfamiliar to me. The reasons I tried to include persons to participate via mail - and not just the Internet - are: 1) Some persons with EMS are too sick to use a computer 2) Some persons with EMS do not own a computer 3) Some persons with EMS prefer handwriting responses on a real piece of paper to typing on a computer and 4) I wanted to include some persons who don't use computers so that they would not be totally excluded.

Because this report mentions specific drugs and treatments, it is especially necessary to include a disclaimer:

QUESTION 1:

Is pain one of your EMS complaints?

Yes - 36 (97%)
No - 1 (3%)
Unsure - 0

Persons replying "No" or "Unsure" were asked to return the Survey to me and not to participate in the rest of the Survey. One (1) person only did not answer the following questions. I think it important to point out that the one person replying "No" did list drugs that he/she takes for pain, which totally control their pain; therefore, he/she decided they do not have pain at this time as an EMS complaint because it is under control due to the medical intervention. That is how I interpret what the person meant and hope that is a fair understanding of what they wrote. I did not include their list of medications in the responses to a later question about medications used.

Numbers in parentheses indicate the number of persons giving that reply. The most-reported range of pain was 3-7 (14%) and the next most-reported figure was the number "5" (8%). I interpret this to mean that more people fall into the mid-range of pain at this point in time. Remember that only 36 persons of the 37 respondents went on to complete the entire survey, so only 36 responses appear in the chart below.

QUESTION 3:

Do you have more pain in your upper body or lower body, or is your pain about equal in the upper and lower parts of your body?

One person of the 36 respondents chose both "upper body" and "lower body." Therefore, the total number of responses is 37 instead of the expected 36 for this question, and the total percentage is over 100%. It's interesting, however, that exactly 17 of the 36 persons replied that they have about equal pain in their upper and lower body areas, a total of 47% - the highest percentage. Furthermore, nobody among the 17 gave any other response.

Upper Body - 6 (17%)
Lower Body - 14 (39%)
Upper Body and Lower Body About Equal - 17 (47%)

QUESTION 4:

List your three (3) most painful body areas, such as: shoulders, abdomen, legs, feet, etc. Do not list more than three. If possible, try to list them with the most painful area first, etc. Do not write comments.

QUESTION 5 (a):

Does cold weather and/or hot weather make your pain worse?

(The total number of replies equals 37 because one person answered both "yes" and "unsure"; therefore, the total of all percentages is more than 100%.)

Yes - 22 (61%)
No - 2 (6%)
Unsure - 6 (17%)
No difference noted - 7 (19%)

QUESTION 5 (b):

If you answered "yes" which makes your pain worse, hot or cold temperatures? If you can, please indicate the temperatures that you consider to be bothersome; for example, "80 degrees or higher"; or "45 degrees or less."

Twenty-two (22) persons were eligible to answer this portion of the question because they had responded "yes" to Part A of Question 5. A number of persons selected more than one option (answer). The percentages reflect, therefore, the replies of the 22 persons, not the entire group of 36 respondents. Since many people cited more than one category, it seems that both heat and cold are perceived as making EMS pain worse by a significant portion of respondents. It seems that the most persons who responded cite temperatures of 80 to 85 degrees F. and above as increasing pain. Cold is a little harder to pin down, but temperatures below 45 to 50 degrees F. was a popular response. The range for cold temperatures was below -10 degrees to anything less than 75 degrees. For hot temperatures, the range was narrow: above 80 to 90 degrees F. especially with high humidity. Also, not every respondent provided specific temperatures or temperature ranges.

Hot - 9 (41%)
Cold - 13 (59%)
Both adversely affect my pain - 10 (45%)

QUESTION 6 (a):

Do you believe that your main doctor tries his/her best to understand your pain and to adequately treat it?

Yes - 18 (50%)
No - 12 (33%)
Unsure - 6 (17%)


QUESTION 6 (b): If you answered "No" to the preceding question, what could your doctor do that would improve his/her understanding of your pain so that he/she can treat your EMS pain better? (Please write 3-6 sentences or make a short list.) [All 12 persons wrote comments who answered "No."]

• "To understand certain aspects of EMS pain, the doctor would most likely have to experience the severe cramps or at least witness them taking place - that would make a good start."

• "Learn more about EMS, listen to what I tell him and take it seriously - not be dismissive; forget what he's been told is supposed to work for pain or some other condition and be willing to try unusual or non-standard drugs/therapies for control of pain with EMS."

• "Learn more about EMS by having more research done."

• "She seems to write it off as FMS or CFS - perhaps because it is so rare here and she doesn't take it too seriously."

• "I do not complain of pain, as I figure I just have to live with it, and it is so much less than when I first got EMS."

• "My doctor feels that the EMS is gone by now. They don't understand how one body can hurt in so many places at once. They need to stay informed on pain management and EMS."

• "Until people actually live in pain daily, I don't think they can understand it. I tell people to imagine the most achy flu they have ever had and tell them to imagine living like that for the rest of their life, knowing it is not going to ever get better, and to realize this is just the tip of the iceberg of what they have to deal with. Perhaps when they are training doctors, they should limit them for a week or so. Give them things they can't do - for example, not let them use their left arm at all, or have them walk only half as fast as they normally do, etc., so they can start to really appreciate what people are feeling."

• "The doctor treats pain as entities by themselves not as part of EMS constellation because I haven't presented them as part of EMS."

• "Not make me feel bad because I am hard to treat; try to empathize more with a not-widely-known condition; give me credit for my own understanding and treatment of my condition."

• "He doesn't understand EMS."

• "Learn something about EMS and not say, 'Oh, isn't that what your mother died from?' Not think EMS is caused by stress; believe me; and read something about EMS - something he knows nothing about."

• "Open their ears; engage their brain; do a little research, i.e., read some EMS articles and confer with doctors working with NEMSN." [NEMSN is The National EMS Network, Inc.]

• "Low calorie diet; avoiding milk products, employing soy milk instead; avoiding caffeine, drinking water mainly; and eating smaller meals throughout the day."

• "No milk or fish."

• "Organic fruits and vegetables; Omega 3 and distilled water."

• "I believe that a low carbohydrate diet has helped me."

• "Low sugar."

• "Just very healthy; tons of fruit and vegetables, whole foods."

• "Chicken, cheese, and eggs are the only protein I usually eat. Then, mostly vegetables."

• "Less fat and sugar in my diet."

• "Avoiding grains and root vegetables seems to have helped some of the pain, i.e., inflammation."

• "Avoiding stress; psychological counseling; and grandchildren."
  
  
• "Topical rubs like Ben Gay, especially first thing in the morning; Tylenol combined with Klonopin for pain and anxiety, also sleep; moving around but in moderation; deep breathing; music, humming, singing; heating pad for 20 min. on upper back; ice pack on painful jaws or neck or upper back sometimes, for no more than 20 minutes."

• "Rest."
  
  
• "Alcohol helps a lot with the pain without adding side effects. Also, I would concentrate and try to imagine the pain leaving my body each time it would flare up." NOTE: **Please do not combine alcohol with your drugs without speaking to a physician - it could be deadly.
  
  
• "Manual lymph drainage; Myosequence; zero body balancing; deep breathing; Chi Gung exercise - "AM Chi" videotape is available at Best Buy (store)."

• "Strength training."

• "Being involved in something I enjoy - play time. Mine is making quilts."

• "Appropriate rest; hot tub; Homeopathy, which included detailed visits to a man who was also a psychiatrist. My insurance paid for first visit, not after. Extremely inexpensive to buy. He issued a prescription. It helped my ADD, word finding problems, physical pain. I was relieved of ringing in ear, shooting pain, that constant buzzing feeling in my body. Many other discomforts, better night's sleep, less relapse occurrences. The only thing that has really helped me, and I still don't fully understand."

• "Deep breathing exercises; lying on left side with upper body propped up; memory foam mattress pad; home care providers who help with everything from showers to housework and driving, so I don't hurt myself or overdo and bring on a flare; counseling to learn how to accept limitations and living with constant pain."

• "I sleep on a magnet pad and magnet pillow. When I did regular acupuncture, they had two or three treatment rooms, and one had a magnet pad on the table. I realized that I could lie still on that one for 5-10 minutes longer before the pain got so bad I had to get up and move around. I then bought one for our bed and have slept on it for two or three years."

• "Being around people is very good for me. I am a people person and should not try to go it alone."

• "Less stress."

• "Resting the painful muscles."

• "Occasional martinis. No joke." NOTE: **Please do not combine alcohol with your drugs without speaking to a physician - it could be deadly.
  

• "Pilates; low impact aerobic dancing; water aerobics; walking. These do not actually make my back or shoulder feel better; they just don't make them feel any worse because I can adapt them to my own needs (not twist too much, not raise my arms too high above my shoulder, etc.)."

• "Sleep."

• "Spiritual books."

• "Almost anything that distracts me enough to re-focus my attention."

• "Trying to stay active in any way allowable by pain; learning when to give in to rest or nap and when to keep pushing."

• "I just live with it."

• "Massage heat chair pad; jacuzzi baths; not sleeping longer than 5 hours in a stretch - longer makes me extremely stiff and intensifies the pain; moaning; tanning bed - light therapy - the rays trigger brain to release natural pain killers; (Linus Therapy) - carry a small blanket with you everywhere when going to air-conditioned buildings."

• "I didn't think anything would help. I have been getting worse and worse and just really recognized and diagnosed with EMS. I will try stuff now! I took LT in '89 and was diagnosed with Fibromyalgia and lived in pain for years, acquired asthma and other symptoms. So now I am going to have surgery on both arms to help pain in arms and keep what use is left. Have done lung tests, and on to the heart to see what damage may have been done there. It is funny how the pain becomes the norm....."

• "Osteopathy! Specifically, the manual, hands-on manipulation. I would not be walking without a regimen that includes osteopathy. In fact, it is the main part of my treatment. I absolutely need to continue exercising (swimming, light jogging when I can, jumping on a small home trampoline) everyday, missing a day only if I overdo it the day before; plus, I need to drink at least 12 glasses of water a day. All of these things together are necessary for me to continue functioning. It is a regimen, it is not a single thing or treatment that helps.
  
  Osteopaths are equivalent to MD's though their degree is D.O. They are doctors who studied at med schools alongside MD's but have a further specialty in osteopathy, which is a more holistic way of regarding the body. Some osteopaths specialize in hand-on body manipulation (very gentle, nothing like chiropractic). Osteopaths prescribe medicine, can be surgeons, work in hospitals, have any specialty - mine is actually "sports medicine."

• "I get some help from Maginex DS, the only oral magnesium that seems to have an effect on me. Shots are better. I tend to feel better when taking Juice Plus, a whole-foods-based vitamin supplement, non-synthetic. Using the Oxy-Pro machine, similar to what is called a Chi Machine, that moves my feet left to right rapidly, causing circulation to speed up and 'oxygenate the blood', also tends to loosen joints and muscles without stress and seems to help my overall pain level, unless I use it too long. A treatment of about 15-20 minutes seems to relieve pain."

• "Topical capsaicin."