(This survey is not represented as being a scientific study.)
(1) Distribution of the Survey
The survey began on March 7, 2002
and concluded at the end of the day, March 15, 2002. Twenty-eight (28) persons of
75 queried returned usable surveys. (37%) M. F. Rumph e-mailed 8 questions
to 75 persons, the majority of them known to her as people having definite EMS diagnoses.
It's possible, however, that a few of the persons queried may have self-reported
EMS, rather than physician-diagnosed EMS. (No online registry of persons with diagnosed
EMS exists at this time.) Persons invited to participate in this informal survey
live in the United States and in Canada.
To determine how many of the respondents had experienced muscle spasms during the
early months & first years of EMS & to briefly describe the nature of the
spasms (timing of onset, severity, duration, location, etc.);
To determine how many of the respondents continue to experience muscle spasms &
whether those spasms are different in nature now from spasms earlier in EMS; and
To compare their spasms during the past 12 - 14 or more years of having EMS with
a written description by an EMS patient, who had testified before a congressional
subcommittee in July, 1991, about his EMS symptoms.(3) Questions Sent via E-mail to Potential Respondents
1. Gender
2. Age at onset of EMS
3. Date of onset of EMS symptoms
4.
Did you have muscle spasms?
5. When did you begin having muscle spasms? Briefly
describe them: tell where you got spasms, how long they lasted, their severity, etc.
6.
Do you still have muscle spasms?
7. Are the muscle spasms different now than they
were during the first years?
8. Please read the following testimony of a person
with EMS who testified at the Congressional Hearings on L-Tryptophan in 1991. Were
your spasms like this at any time during the past 12 to 14 years?**
**(As
it turned out, a few of the respondents had had EMS for over 14 years at the
time of the survey.)
"….Two months later I was back in the emergency room of Georgetown Hospital with a raging fever, and the indescribable spasms that I have not mentioned until now, but which are the hallmark feature of EMS, and the peculiar terror of every EMS patient. Imagine, if you can, a painful cramp in the foot multiplied a hundredfold. The spasms hit every part of the body - no muscle is inviolate. Furthermore, the spasms are liable to hit simultaneously, leaving the victim howling in pain or writhing on the nearest flat surface. Flat surfaces for me have included the subway, Pennsylvania Avenue, the privacy of my office, and the Grand Foyer of the Kennedy Center, plus others too numerous and tedious to mention here…."
M. F. Rumph consulted an online medical source to discover if there is any relevant difference between a spasm and a cramp. It's known to most who have EMS that persons with the disease most commonly refer to the muscle pain as "cramps." In fact, a spasm is defined as "a sudden, involuntary muscular contraction, either of a single muscle or of a group of muscles." Spasms of large muscles of various parts of the body "can produce moderate to severe pain. Such painful muscle spasms are commonly known as cramps." Spasms may also occur in a small muscle or a single muscle. Examples might include the larynx or small muscles of the walls of arteries. For the purposes of this limited survey, muscle spasms and cramps shall be considered to be the same without distinguishing between large muscle spasms, single muscle spasms, or small muscle spasms. Nobody answering the survey was asked to make that medical distinction.
1. Gender
5 male respondents - 18%
23 female respondents - 82%
2. Age at Onset
24 to 61 years
Median age - 43 years (defined as half above & half below this age)
Average age - 44 years (obtained by adding all ages & dividing by 28)
Age at Onset of Male Respondents:
31 to 51 years
Median age - 43 years
Average age - 42 years
Age at Onset of Female Respondents:
24 to 61 years
Median age - 43 years
Average age - 44 years
Comment: 3 persons were 43 years of age
at onset; 2 were females; one, a male. This explains how 43 could be
the median age for both men and women.
3. Date of Onset of Symptoms
Practically all respondents provided month and year of onset of symptoms. Several
gave only the year. A few individuals seemed unclear as to the exact month of onset
of symptoms. For those persons, I used the first month they mentioned, when two consecutive
months were cited. A couple of persons provided the season of year instead of a month.
For those cases, I used the middle month of the season as month of onset of
EMS.
Pre-Epidemic Cases: 5 of 28 respondents
5 respondents - 18%
Percentage females among pre-epidemic cases - 40%
Percentage males among pre-epidemic cases - 60%
Percentage pre-epidemic males of 28 respondents - 11% (3 males)
Percentage pre-epidemic females of 28 respondents - 7% (2 females)
Dates of onset reported: 1981; 11/87; 5/88; 9/88; & 1988
Females: 1981 & 9/88
Males: 11/87; 5/88; & 1988
Number reporting onset in 1988 - 60%
Number reporting onset in 1987 or earlier - 40%
Age range at onset of pre-epidemic cases: 31 to 49 years
Epidemic Cases:
23 of 28 respondents
Percentage epidemic onset cases - 82%
Percentage epidemic onset females - 75% (21 females)
Percentage epidemic onset males - 7% (2 males)
Number of reports of onset from January 1989 through May 1989 - 0 cases reported
Number reporting onset in 1989 (no month given) - 4% (1 person)
Number reporting onset in June 1989 - 4% (1 person)
Number reporting onset in July 1989 - 4% (1 person)
Number reporting onset in August 1989 - 30% (7 persons)
Number reporting onset in September 1989 - 9% (2 persons)
Number reporting onset in October 1989 - 35% (8 persons)
Number reporting onset in November 1989 - 4% (1 person)
Number reporting onset in December 1989 - 4% (1 person)
Number reporting onset in January 1990 - 4% (1 person)
Age range at onset of epidemic cases: 24 to 61 years
4. Did you have
muscle spasms?
100% of 28 persons reported having muscle spasms at some
time since onset of EMS.
5. (A) When did you first have muscle spasms?
(28 respondents)
My definition of "onset" is the time
from the beginning of symptoms of EMS through the end of the 4th week of symptoms,
approximately. For the purposes of this survey, onset is not the same as the
entire acute phase of EMS (which was a period of some months or longer). Persons
citing the start of spasms during the onset stage of EMS often replied that
their spasms began "at once"; "immediately"; "was the first
symptom"; or, they stated the spasms began during the month they had given as
"date of onset." Others, whose spasms began later, often wrote comments
such as: "Spasms began about 2-3 months after onset"; or they gave the
month of onset of spasms, and I compared it to the date of onset of first EMS symptoms
which they'd previously provided in order to determine when spasms began.
Onset - 54% (15 of 28 persons)
1 month after onset - 4% (1 person)
2 - 3 months after onset - 14% (4 persons)
4 - 5 months after onset - 4% (1 person)
6 - 8 months after onset - 4% (1 person)
3 years (approx.) after onset - 4% (1 person)
5 years (approx.) after onset - 4% (1 person)
"Pre-epidemic" - 4% (1 person)
"Unable to remember" when spasms began - 7% (2 persons)
"Just before going to the hospital"; date unclear - 4% (1 person)
Comment:
About 20 persons definitely remember spasms starting during the first 4 months of
having EMS, and more than 50% of persons experienced spasms during the onset month.
It's likely, but not known for sure, from a careful reading of several of the other
respondents' answers, that they also experienced spasms during the first several
months of EMS. However, these persons' memories failed them, and their answers were
too vague to know with certainty when their spasms began in comparison with onset.
5.
(B) In what parts of your body did you have muscle spasms? (28 respondents)
Locations of spasms listed in descending order of frequency:
1. Legs
(lower, shin, calves) - 71% (20 persons)
2. Feet (not including toes) -
54% (15 persons)
3. Hands - 39% (11 persons)
4. Back - (upper,
mid-back, lower) - 36% (10 persons)
5. Arms - (upper or lower) - 25%
(7 persons)
6. Toes - 21% (6 persons)
7. Chest/Torso - 18% (5
persons)
8. Stomach/Abdomen - 18% (5 persons)
9. Neck - 18% (5
persons)
10.Fingers or Thumbs - 14% (4 persons)
11.Thighs - 11%
(3 persons)
12.Hips - 11% (2 persons)
13.Ribs/Ribcage - 7% (2
persons)
14."Throughout Body" or "All over" - 7% (2
persons)
15.Ankles - 4% (1 person)
16.Chin - 4% (1 person)
17.Shoulders
- 4% (1 person)
18.Wrists - 4% (1 person)
19.Jaws - 4% (1
person)
20.Sides - 4% (1 person)
6. Do you have muscle spasms now?
(28 respondents)
Among all respondents: 25 of 28 answered Yes: 89%
Among all female respondents: 20 of 23 answered Yes: 87%
Among all male respondents: all 5 answered Yes: 100%
Respondents answering No: do not have spasms now: 2 females - 7%
Respondent (1) answering "not sure" if her symptoms now are
spasms - 4%
Comment: Most of the 25 persons who responded "yes"
said that their spasms are mild or severe or range from mild to severe. Some said
that they get spasms rarely, and a few stated they get spasms as often as weekly
or several times weekly. Two females deny having any muscle spasms now.
7.
Are the muscle spasms different now than they were during the first years?
Note:
"Now" is defined to be March 2002, the date of the survey. (28
respondents)
Part A:
Yes, the spasms now are different - 68% (19 persons)
No, they are about the same as always - 14% (4 persons)
N/A, since respondents no longer get spasms - 7% (2 persons)
"Not sure"; "may be different" - 7% (2 persons)
"Not really different" just more "rare" - 4% (1 person)
Part
B:
Ways cited in which muscle spasms differ now from earlier in the 19
persons who answered "yes" to the question:
Spasms are not as severe; not as long; less painful (most cited response by far)
Spasms occur in different areas of the body now than formerly & are less severe
Spasms are less severe in one part of the body now, but more severe in another part
Spasms are brought on now by specific behaviors, such as sneezing or laughing
Spasms are less severe but last longer
Spasms are less severe due to good control with medications or other treatments
Spasms are different in that they have made the muscles harder & very painful
Spasms are more localized than before
Spasms are less severe but "flares" occur regularly & are troublesome
Comments:
By far, the 19 persons who said that their spasms are different now agreed that the
spasms are "less severe." Often, this was spelled out to mean: occurring
less frequently, not lasting as long, not being as painful, & not being as frightening.
Several persons appear to have achieved an easing of spasms in the upper body (such
as hands) but perceive a worsening in the legs (two of the men mentioned this, for
instance). One person's comments concentrated on the hardening of the muscles now
and the degree of painfulness of the muscles as a result of the years of spasms.
Two or three persons (of both genders) mentioned that specific "behaviors"
(sneezing, laughing, taking a few sips of alcohol after not having drunk anything
for a while) bring on spasms. One person's spasms are less severe overall but last
longer & are more bothersome in the lower body and back. Another person talked
about "flares" a good bit but seemed to indicate that, otherwise, spasms
have improved. And several people talked about the medications they use which they
believe have helped ease and improve the spasms: magnesium by mouth or injection
or IV; anti-inflammatory prescriptions; muscle relaxants; and regular exercise (like
walking). We also know that people with EMS use other therapies as well.
8.
Please read the following testimony of a person with EMS who testified before the
congressional subcommittee in July 1991. Were your spasms like this at any time during
the past 12 to 14 years?
(Note: As I wrote earlier, a few respondents
have had EMS for more than 14 years.)
"….Two months later I was back
in the emergency room of Georgetown Hospital with a raging fever, and the indescribable
muscle spasms that I have no mentioned until now, but which are the hallmark of EMS,
and the peculiar terror of every EMS patient. Imagine, if you can, a painful cramp
in the foot multiplied a hundredfold. The spasms hit every part of the body - no
muscle is inviolate. Furthermore, the spasms are liable to hit simultaneously, leaving
the victim howling in pain or writhing on the nearest flat surface. Flat surfaces
for me have included the subway, Pennsylvania Avenue, the privacy of my office, and
the Grand Foyer of the Kennedy Center, plus others too numerous and tedious to mention
here…." (Please see Source of Testimony previously cited in this
report.)
Replies of 28 respondents:
Number who replied with a definite Yes - 43% (12 persons)
Number who replied with a definite No - 39% (11 persons)
Number answering almost or nearly or similar - 11% (3 persons)
Number not answering and/or not answering clearly - 7% (2 persons)
Selected Comments by Five Anonymous Respondents (all females)
"One of the first symptoms. They started around my ankles and lower legs. I
can't think of an area I haven't had them…. My feet and hips are the most consistent
with spasms on the top of the feet that feel like the bones are breaking…. The muscles
in my calves have become hard from being spasmodic so much. Nothing I've tried has
given me relief, and none of my doctors have understood the severity…."
"Muscle spasms were the first symptom I got…. They were horrible…. The scariest
thing about them, however, was not knowing how long they were going to last. I came
to learn that they usually went on for about 20-30 minutes, sometimes longer. I first
began getting them in my ankles and outside lower legs and calves…. [Now] they are
less severe and don't last as long…."
"I can't remember exactly when they started, but pretty much at the beginning.
Mostly, I got them in my hands, feet, torso, back, neck, and legs. [Now] they
are in the same places, but not as often or as severe…. Mine never have been….. quite
that serious [as those of the person who gave the congressional testimony] but they
would double me up…."
"[Spasms] began in fall 1989 in a foot and lasted about 30 minutes - not like
a charley horse. After that, I got them regularly, and they worsened over time….
Spasms in legs and feet lasted up to 30 minutes and increased in pain as time went
on, building up, then gradually going away…."
"[Spasms began] almost immediately…. I most commonly got them in my hands and
feet, but sometimes in my stomach area (under the breastbone and above the waist)
or my back (below my wingbone and above my waist)…. [Now] they occur for no discernible
reason, at no predictable time. They last a few minutes…. They haven't altered my
lifestyle…."
Final Comments on Survey Findings
Certain
factors about EMS and spasms stand out when assessing the returned surveys. Obviously,
all members of this group experienced spasms to one degree or another at some time
since having EMS. That this is so is important to stress to all who would understand
EMS better. Though the cramps may appear in different parts of the body and may not
be as severe as those of the individual who testified before Congress, nevertheless,
muscle spasms are an important feature of EMS, possibly a universal feature. They
are also an ongoing source of pain even after all these years; however, for most
persons, they have diminished in frequency, severity, and duration.
Other
current characteristics of EMS, mentioned by the respondents, which sometimes are
associated with spasms, include: fatigue, new diagnoses that may be related to EMS
(one person wrote about Trigeminal Neuralgia), and difficulty carrying out ordinary
tasks of everyday living. A lucky few in this group appear to have made a very good
or excellent recovery from muscle spasms and EMS. The majority seem to be managing
their disease as well as they can, taking into consideration the rarity of the illness
and the general lack of knowledge about the disease by both medical professionals
and the general public.