Survey of Forty EMS Patients - October 2007

Part 1

Introduction

Because I maintain contact with many patients with EMS, I hear from persons with the disease who have questions about their situation; often, as well, they wonder how others with EMS who have the same problem(s) are doing. Sometimes these people want to know if others with EMS have the medical symptoms or diseases they have developed. This is a perfectly normal desire on the part of people who find themselves with a rare disease. After all, it's not as though they are likely to run into others at their doctors' offices who have EMS. People with EMS live in most states and find themselves spread out all over America (including Hawaii and Alaska) and in several provinces of Canada. Since I have a Web site and a Yahoo group for EMS, it's natural that I would hear questions from patients, so I often make lists of them until enough suitable ones are on hand to do a Survey.

In September 2007, I decided to ask EMS patients on my email list to submit additional questions for a Survey, and I used the best of those added on to some earlier questions I already had saved. Some persons sent one question, and others sent multiple questions. I devised this Survey of 10 questions for all participants to answer with two (2) optional questions at the end - that most respondents answered (at least in part). Thus, the final Survey contains 12 questions some of which have more than one part.

When I sent the Survey on October 8th to my list of around 100 persons with diagnoses of EMS, I had hoped to achieve at least 40 responses. At one time it didn't seem they would come in, but by October 31st, the 40th Survey arrived. All of this was accomplished via email.

The TOPICS (questions) covered include: 1) Age range of respondents; 2) Diagnoses of Fibromyalgia and/or Chronic Fatigue Syndrome; 3) Problems with having invasive medical tests, and in particular, a colonoscopy; 4) Whether or not muscle spasms still occur and what factors the patients think cause them; 5) Whether or not the respondents believe there is adequate research conducted on EMS now; 6) Problems with healing after surgeries since getting EMS; 7) Cancer occurrence, recurrence, kind of cancers; 8) Total cholesterol levels now, totals prior to EMS if known, and questions on usage of statin drugs; 9) Osteoporosis diagnoses and occurrences of broken bones; 10) Number of latent or recently developed health problems believed to be related to EMS.

OPTIONAL questions 11-12: Worst and best things about having EMS; the one thing hat has helped the most in dealing with EMS, and any medical or health advice the respondent would like to know from patients or doctors.

I thank all those who participated. It was wonderful to have three (3) Canadians joining in with Americans in returning the Survey.

The approximate rate of return of Surveys of 40% is impressive when one considers that at any time a fair number of those contacted are in relapse or sick with something else (like pneumonia); a few can't even type for themselves but rely upon a spouse or someone else; some in better health may be on vacation or visiting relatives, and so on.

Because analyzing the Surveys has taken a lot of time and because my health is not as good as it used to be, it has taken me longer to compile the information, analyze it, and write this first report, than I had planned. I realized at some point that it would be easier for me AND for readers if I divided the report into two parts. Part 1 covers Questions 1-6, and Part 2 covers Questions 7-12 and will appear as a second report. (I have already written two sections of Part 2.)

faith rumph - January 22, 2008 (when I began writing Part 1)

Survey Questions and Answers

Question 1: What is the average age range of EMS patients taking this Survey? Please indicate if your age is:

1) Age 35 or under: 0 respondents
2) Ages 36 - 49: 1 respondent of 40 - 2.5%
3) Ages 50 - 64: 28 respondents of 40 - 70%
4) Ages 65 - 75: 10 respondents of 40 - 25%
5) Ages 76 - 85: 1 respondent of 40 - 2.5%
6) Age 86 or higher: 0 respondents

Comment: Although more than one (1) person in age group #5 received the Survey, only one (1) was able to return the Survey. To my recollection and knowledge, nobody in category #6 received the Survey. Perhaps 3-4 persons age 49 and under were sent the survey, and only one responded. The fact is that the majority of persons online now who have EMS fall between ages 50 and 75. As of January 2008 we are entering the 19th year since the epidemic onset, and people are older and many are less well. Subtract about 20 years and you can see what the age of onset was for the majority of people who took this Survey. Obviously, a number of persons who were in their mid-60s and beyond at onset are no longer living 20 years later.

Question 2: Part A

Have you been diagnosed (by a doctor, not self-diagnosed) with Fibromyalgia or Chronic Fatigue Syndrome? If you can recall, write the year of diagnosis or approximate year.

1) Fibromyalgia: 9 persons of 40 respondents - 22.5%

2) Chronic Fatigue Syndrome: 2 persons of 40 respondents - 5%

3) Both FM and CFS: 8 persons of 40 respondents - 20%

4) Neither FM or CFS: 16 persons of 40 respondents - 40%

5) I had a pre-EMS diagnosis of FM: 3 persons of 40 respondents - 7.5%
and one person had a pre-EMS diagnosis of FM and/or CFS: 1 person of 40 respondents - 2.5%

6) One (1) person was simultaneously diagnosed with EMS and FM: 1 person of 40 respondents - 2.5%

Obviously, a fairly large number of this group of 40 EMS patients have either FM, CFS, or both as diagnoses in addition to EMS. Few of the diagnoses preceded EMS, and it seems to me that several of those might have been early EMS "symptoms." CFS alone in this group at only 5% can't compare to FM diagnoses alone at 22.5%. This matches my perception over the years that more persons with EMS have been diagnosed with FM than with CFS. Various reasons might account for this difference, such as: 1) Doctors are more comfortable giving a FM diagnosis than a CFS diagnosis 2) More EMS patients actually do have FM or FM-like symptoms than CFS 3) Even though some patients might have components of both CFS and FM, doctors choose the diagnosis that most "matches" the secondary syndrome, and that seems to be FM in the majority of EMS patients in this group. I personally think this result is accurate because most of the patients online with whom I have interacted over 12 years appear to fit into an FM diagnosis alone than into both FM and CFS or CFS alone. I also recognize that MANY (indeed the majority in this group) do not appear to have either additional syndrome, or if they do, nobody recognizes it as being separate from EMS. At this time it is hard to know what is separate from EMS, anyhow, at times for both patients and doctors, unless it's quite clear-cut like thyroid disease, cancer, or liver disease. These are my personal opinions.
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Part B: (optional)

Part B asked for the year of diagnosis if the person recalled and didn't mind providing the year. This was an entirely optional question. Not that many people answered.

There were a few pre-epidemic diagnosis years: 1983, 1988 and the first months of 1989; however, it's possible that the people diagnosed with FM or CFS in 1988 and early 1989 were in the first stages of EMS. Who knows? There were pre-epidemic onset cases of EMS that might have been misdiagnosed as FM and/or CFS. One case of CFS was diagnosed as late as 1999, and one case of FM as late as 2003. A couple people got FM diagnoses in 1997, and a couple people in 1991 early on. So there's a spread of 20 years involved from 1983 to 2003 for Fibromyalgia diagnoses. The vast majority of people got FM or CFS after getting an EMS diagnosis, not before or simultaneously.

Question 3: Part A

Do you have problems when you have invasive medical tests (that is, relapses of EMS symptoms afterwards, bruising, problems during the tests, etc.)? Invasive tests include biopsies, endoscopies, tests using needles or other probing or cutting instruments, etc.

1) Yes: 16 of 40 respondents - 40%
2) No: 18 of 40 respondents - 45%
3) Unsure: 6 of 40 respondents - 15%

Comment: I believe the group is about evenly divided among those who believe they have problems afterwards from invasive tests and those persons who believe they do not. I can't account for why six (6) persons would be "unsure" about having adverse aftereffects to invasive tests. There might be various explanations, but I am not going to attempt here to name any, except to say that perhaps they may not be sure what is "normal" to experience after the tests they've had and feel they can't be sure if their experience differs from that of other people.
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Part B: This was just for those who have had a colonoscopy. A person with EMS was particularly interested in whether others with EMS have problems with this invasive test, such as pain. ONLY those who have had colonoscopies were instructed to look at Part B of Question 3; however, not everyone who has had a colonoscopy chose to give an answer, apparently.

The question read:

Part B: If you have had a colonoscopy, have you suffered any adverse or debilitating aftereffects to the test (or problems during the test such as with anesthesia)?

Comment: Only 2 persons indicated they have not had a colonoscopy, but it's likely that some of the six (6) persons who answered "Unsure" for Part A have not had a colonoscopy. Otherwise:

Four (4) respondents said they have definite problems with a colonoscopy afterwards and also wrote their own explanations/experiences. But approximately 24 respondents indicated they do not have any untoward difficulties with having a colonoscopy (while some of them answered "yes" to Question 1.) That's about 60% of respondents who deny they have problems with colonoscopies - yet 40% of respondents answered that invasive tests give them "problems." One can only conclude that different tests affect persons differently. Maybe some have problems with invasive dental procedures, for instance, but not with colonoscopies. In fact, one person did write that needles always cause bruising. Many explanations exist.

The conclusion of the matter to me is this: Very few of the respondents who have had colonoscopies state on the record that they have any unusual difficulty with the invasive exam. Yet, overall, 40% of the respondents somehow perceive they have a problem with "invasive tests." I suppose it's just not with colonoscopies. Unfortunately, I did not think to ask what tests cause problems, if not a colonoscopy.

Comments of the people answering "Yes" to Part B: (Not all offered comments)

Respondent #1: "Yes, I have had 3 colonoscopies and 2 endoscopies (tube down the throat to check for upper stomach and esophagus problems). In two of the colonoscopies and both of the endoscopies, the medicine given through the veins to make you drowsy did not work. They had to keep giving me more because I was coming awake and had pain. My last endoscopy was three weeks ago. The medicine to make you drowsy did not work at all; they kept giving me more, and I was awake during the whole thing - very uncomfortable and painful. My advice would be to make sure they are aware that sometimes that type of medicine does not work. I also had a biopsy in 1990. They checked for eosinophils and inflammation in my thigh muscle. There were many and a lot of inflammation. This was done in an operating room with a local anesthetic; it wore off very quickly and I was feeling the pain. Terrible experience. My doctor apologized and tried to shoot more anesthetic and it wouldn't work. He quickly got the job done and sewed up the wound. I do not respond well to local anesthetics."

Respondent #2: "Severe abdominal cramping for several days."

Respondent #3: "I have to have one every year because I have had pre-cancer cells in polyps. Besides always being sick on the table - unknown reason for that (vomiting), afterwards I am always in more pain and total fatigue. End up in bed with a loss of appetite and [am] weak for at least two days. Do not know if it's just from the trip and hours it takes to go to and from the hospital, or if the test itself causes this."

Respondent #4: "Severe pain."

Question 4: Part A

Do you still get muscle cramps in your extremities or elsewhere?

1) Yes: 38 of 40 respondents - 95%
2) No: 1 of 40 respondents - 2.5%
3) "Very rarely": 1 of 40 respondents - 2.5%

Comment: "Very rarely" is not the same as "No"; therefore, I made it a separate category. It's instructive to patients and doctors alike that, after all these many years, so high a number of persons with EMS still get spasms in their muscles. For some, they may not come as often or last as long or be as severe. For others, they are severe yet at times. I feel there is variation among patients as to sites of spasms, causes, and severity - still. For instance, I have never had a spasm in my hands or fingers, but I know many others have had that. And, as I write this, I am recalling that I awoke this morning with an EMS spasm in my right foot that was painful for about four minutes. But it's nothing compared to the monster spasms I used to get in my feet and legs that lasted 30 minutes or longer. Yesterday, I had several EMS spasms in my upper abdomen, but those are nothing, either, compared to years ago - still, they create pain, slow me down, disrupt my life, and leave the area sore. Personally, I can go a week or two (occasionally several months) without a spasm anywhere, but most of the time I have a distinct spasm at least once a week. And, worse, most often I personally feel that instead of having distinct spasms, I get general spasming in areas of my back or chest. This type of cramping is very painful, too.
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Part B:

What do you think are the causes of the cramps (precipitating factors)? Following are all answers given:

Overuse of muscles: 13 respondents or 32.5%
Fatigue/Tiredness/"Extreme" fatigue/General body fatigue: 12 respondents or 30%
Unsure/Haven't noticed any trigger/No pattern: 12 respondents or 30% (Some people seemed sure what causes spasms of feet or legs but not of the stomach, for instance; most in this category are truly unsure about the cause of all spasms. It's also important to note that most people listed multiple possible "causes"; and sometimes they listed several causes they are sure about but then went on to say they are also "unsure" at times.)
Cold temperatures/Cold weather: 8 respondents or 20%
Certain movements such as bending/Standing on tiptoes/Yawning/Moving in a different way: 6 respondents
Stress/"Extreme" stress: 4 respondents
Activity/Activity level/Trying to exercise: 3 respondents
Straining muscles/Stretching muscles such as reaching for something: 3 respondents (Quite similar to bending movements)
Humidity/High humidity: 2 respondents
Underuse of muscles: 2 respondents
Weather change/Changing temperatures (hot to cold, cold to hot): 2 respondents
EMS is causing the cramping & aching/Flareup of EMS: 2 respondents
Low magnesium in the body due to getting stomach upset or dehydration/Lack of magnesium: 2 respondents
Come on randomly out of the blue/No reason: 2 respondents
Seems always related to eating; Occurs while eating; Holding eating utensils: 2 respondents
Too much walking: 1 respondent
Too much work or recreational activity (such as mowing lawn, cutting wood, riding motorcycle): 1 respondent
Standing on hard or cold surfaces: 1 respondent
Extreme heat: 1 respondent
Pushing to keep going: 1 respondent
Delayed reaction after encountering a stressful situation: 1 respondent
Connective tissues tighten up severely and that causes the muscles to go into spasms: 1 respondent
Any use of the muscles - basically, any movement other than lying in bed: 1 respondent
Lower calcium or lower vitamin D: 1 respondent
Lack of potassium: 1 respondent
Change of seasons: 1 respondent
Muscles getting chilled: 1 respondent
Lack of sleep: 1 respondent
What I eat: 1 respondent
Excess caffeine a day; anything over 100 mg: 1 respondent
Lying in bed for the night, often get a cramp that can be worked out with stretching: 1 respondent

Question 5: Do you feel that adequate research on EMS occurs today? [2007]

1) Yes: 0 of 40 respondents - No respondents of 40 queried felt with certainty that adequate research occurs today.
2) No: 30 of 40 respondents - 75%
3) Unsure: 10 of 40 respondents - 25%

Comment: I don't think this needs much commentary. The vast majority of persons with EMS do not believe outright that adequate research occurs, and the rest are "unsure" for various reasons, I would guess. Either way, nobody thinks with absolute certainty and conviction that adequate research on EMS happens today.

Question 6: Have you experienced difficulties healing from surgeries since getting EMS?

1) Yes: 14 respondents of 40 - 35%
2) No: 12 respondents of 40 - 30%
3) Unsure: 3 respondents of 40 - 7.5%
4) Not Applicable: 11 respondents of 40 - 27.5%

Comment: Eleven persons out of this group of 40 respondents have not had surgeries since getting EMS, so they replied N/A to this question. I am going to assume that the three (3) persons who answered "Unsure" have had surgery of some kind but don't feel they know for sure if they had problems with healing. That could be a wrong assumption, but I am going to make it. Surely, if a person has had any kind of major surgery, they would remember having had it, but it is possible they may not feel they can assess if their healing was worse than pre-EMS for various reasons; perhaps, they had no surgical procedures prior to EMS, even minor ones, or no experiences prior to EMS with having wounds, even - though that is somewhat a stretch, but still possible.

If you take away (subtract) the 11 persons who have not had surgeries, you are left with 29 persons, not forty (40). So, let's not count the 11 persons at all for a moment and work with the 29 persons who have had some kind of surgical procedure since EMS. That will change things.

Fourteen (14) have difficulty healing following surgery. Let's re-calculate using 29 persons instead of 40:

1) Yes: 14 respondents of 29 - 48.3%
2) No: 12 respondents of 29 - 41.4%
3) Unsure: 3 respondents of 29 - 10.3%

So now we see that things look different. Take away the people who have not had surgeries, and you can see that almost 50% of the remaining respondents believe they heal more slowly or not as well since getting EMS. However, it's about equally divided between the ones who have problems and the ones who believe that they definitely do not have healing problems now following surgeries. The three persons answering "unsure" are really a small number out of the 40 original number, and not that great a real number of 29 persons.