As a newly diagnosed patient with this disease many of you
have sent me articles on the subject and the FF members who
have this disease sometimes spend time trying to help each other,
and many of you have sent articles to me.
For those interested ,please go do a search or ask anyone of us
where to read up on this disease. It is even more complicated
than what I have done here.
Without meaning to over-simplify the definitions, I can tell you
I have told doctors and friends that I cannot imagine cancer
patients hurting any worse. And I would opt out if I thought I
would have to deal with this kind of pain with never any relief.
For now I have gotten some medicine and I am trying to learn
to adjust my life style to make it more bearable.
As of Oct. 2000 I am no longer able to work. This was
originally written Spring 1999.
For fibro folks it's always a question of when we will have to
leave our jobs or lose it because our co-workers can no longer
deal with our being missing from our jobs.
No day is ever pain free. I am a positive person. But it is hard
to be positive when I wake up aching and wondering if this is
the day that I won't be able to walk or concentrate or care
My description of this pain to maybe help those who cannot
comprehend it is this:
If you get the flu you ache really bad a day or two. When this
aching starts it does not go away in a day or two, and magnify that
pain 10-20 times or more and it can be that forceful and that pain
magnification can change many times in the course of a single day,
and we all deal with it for days on end. EVERY day!
God Bless you all, this is one article that Penny Andrea Einmo sent
me. There are many more from Linda Fritz, Linda Bennett, Judi
Grant, Charlotte Guthrie, and other friends if you are interested.
If you are a member of Forever Friends 5 you can go here to sign up
and get support from the 30 plus members who also have fibro or
other debilitating health conditions.
If you would like to join us, you do NOT have to be an FF
member to join this mini-list:
Go here: http://foreverfriends50.tripod.com/FFfibro.html
scroll down to where it says "Subscribe" and that will get you to
Yahoogroups to sign up.
Fibromyalgia and its sister myofascial pain syndrome is characterized by
several things: muscle pain,depressive symptoms,impairment
of daily activities, interrupted sleep patterns.
In many cases, fibromyalgia evolves into muscle pain that is unrelenting
and a devastating life experience. The existence of fibromyalgia
has been debated for many years, but its existence cannot be denied.
The fibromyalgia sufferer has several challenges: to improve their
quality of life, to better understand why they hurt, and to help loved ones
(and, yes,even their physicians) understand their symptoms and suffering.
Fibromyalgia often overlaps with other diseases and it's more than less
of a syndrome. We name syndromes in medicine to associate
more than one problem to a specific diagnosis.
Fibromyalgia is a diagnosis. Although much maligned and criticized,
the official definition from the Copenhagen Declaration of 1993
established fibromyalgia as a disease entity.
Fibromyalgia is primarily pain,
but as anybody that suffers from this disease knows, there is so much more.
Fatigue, poor restorative sleep, headaches, irritable bowel,frequent pelvic
and bladder pain, and migraine headaches. Although not the
classically predominant symptoms of fibromyalgia,
I refer to these as the Fibro-5: headache, chronic fatigue, irritable bowel, and pelvic pain (or
interstitial cystitis). These problems are devastating, and truly alter the life experience.
This is the fibromyalgia syndrome. Pain and the helplessness of
marginal relief and, more often, disbelief.
The American College of Rheumatology (ACR) in 1990 explained the
"presence of unexplained wide-spread pain or aching, persistent fatigue,
generalized morning stiffness, poor restorative sleep, and tender points".
The ACR defined 11 tender points that had a consistent statistical
relationship to patients presenting with this syndrome in the rheumatology
clinic. We now believe that abnormal pain processing mechanisms are at the
root of fibromyalgia. Fibromyalgia sufferers have a low pain threshold and a
high discrimination of pain.
For well over 10 years this disease has been
recognized in the world
literature. Unfortunately, a very small number of practitioners are experts
in the field, and little training in medical schools and residency
programs teach important treatment options to improve quality of life.
In 1987, the American Medical Association legitimized fibromyalgia
syndrome by recognizing it as a disease state.
Fibromyalgia is called many different names.
This leads to further
confusion. Fibrositis, myofascial pain, myofascial pain syndrome, psychogenic
rheumatism, fibromyositis, myofasciitis, tensionmyalgia,psychological
muscle disorder, and muscular fatigue syndrome are terms that have been
associated with fibromyalgia.
Only recently are the terms fibromyalgia and Myofascial Pain Syndrome
as the most acceptable in our understanding of definitions. Fibromyalgia
syndrome is the most useful term due to the many associated symptoms
found with this disorder.
Obviously, fibromyalgia is not a new disease
and has been described
for well over 100 years. For example, a man named Gowers, era 1904, used
the term Fibrositis when describing back pain or "lumbago". This is an
example of concomitant fibromyalgia. Fibromyalgia with another disease.
It has been my experience that most fibromyalgia has an underlying
concomitant problem, most commonly, back pain. In the 1960's, the term
Fibrositis evolved into generalized musculoskeletal aching,
poor restorative sleep, chronic fatigue and multiple tender areas of pain.
M.B. Yunus moved this disease forward by associating demographic
features such as age, sex, and race to well-designed studies that
truly helped validate this disease in the medical literature.
Fibromyalgia has been broken down into different
Regional fibromyalgia, or myofascial pain syndrome, which limit tender points
to a few locations only. Primary fibromyalgia is most common.
Primary fibromyalgia is widespread pain and aching in most of
the tender points, but in reality, is "pain everywhere". Secondary fibromyalgia
is activated by an associated symptom, such as back pain, rheumatoid
arthritis, hypothyroidism, or trauma, to name a few.
Finally, concomitant fibromyalgia refers to fibromyalgia intermingling
with another unrelated disease. It's useful to think of concomitant
fibromyalgia and primary fibromyalgia as really the same problem.
Concomitant fibromyalgia just has a medical condition associated with it.
What we find with Fibromyalgia Syndrome
The Copenhagen definition of fibromyalgia syndrome is outdated.
Although a good original attempt to standardize fibromyalgia, simply stating
11 of 18 specific tender points necessary for diagnosis is not helpful
in clinical practice. In reality, fibromyalgia is pain all over, a process
of increased activity in the nervous system that turns up the pain amplifier.
Really, the most predominant symptoms of fibromyalgia are just generalized pain,
stiffness, joint pain, poor restorative sleep and fatigue. Many patients
also say that they feel bloated or have multiple swelling points, and are
anxious to point to new areas where they are "swolled up". Well over 50%
of fibromyalgia sufferers complain of back pain.
Another very common complaint is chest pain. Cardiac disease must be
ruled out, of course, but most chest pain is related to fibromyalgia itself.
Tingling and funny sensations in the hands, feet and extremities are
also very common, as is a numbness sensation in the extremities.
Nerve studies are usually normal.
Fibromyalgia is cross-cultural, race, sex and age indiscriminate.
Although claimed to be a disease of "white, bright" females, fibromyalgia can
be diagnosed with any age, any race, sex and social status. Primarily
it is a female disease of white race, but this may be due to sampling bias.
Age at on set is most notably between 30 and 50, but fibromyalgia patients will
regularly relate to problems to early childhood. Irritable bowel, frequent headaches,
fatigue and unexplained muscle pains were brushed off as "growing pains".
Symptoms of fibromyalgia are as variable as
those describing them.
If we stick to the Fibro-5 as being the most useful to work from, the
disease is a process of abnormal signals in the central nervous system.
Simply put,however, fibromyalgia is a pain of multiple sites.
This is the first and foremost diagnostic criterion and the one most easily overlooked.
It's too simplistic to say there are 11 tender sites, or it must be on both
sides, or that it can't possibly be present unless there are other associated
problems like fatigue and poor sleep. Fibromyalgia is "hurting all over" and
a process of central sensitization. Other consistent and useful symptoms
include: swelling of tissues and joints, stiffness, tingling, anxiety and swollen points.
Fibromyalgia is really an easy diagnosis. "I hurt all over, my gut
hurts, I can't sleep well, I'm becoming more depressed and anxious, I'm losing
control of my life, I have frequent headaches, and sometimes I have pelvic pain
Fibromyalgia is either mild or severe. Again,
this may be simplistic,
but if somebody tells me their lifestyle, activities of daily living,
and importantly, they feel they can't go to work because of these
symptoms, I label this as severe. Loss of function can be independent of pain,
Pain is a description and not an entity. It
is not a benign disease.
Benign means that it has very little impact on life experience and
is not life threatening. Dr. Jack Kavorkian has assisted suicide in
fibromyalgia. People contemplate suicide with this disease. It is not
life-threatening by the classical definition, but don't say this to some of
our fibro sufferers. This is not a harmless disease.
A Letter to Normal Folks
Having FMS/MPS means many things change, and a lot of them are
invisible. Unlike having cancer or being hurt in an accident , most
people do not understand even a little about FMS/MSP and its effects,
and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand......
These are the things that I would like you to understand about me
before you judge me....
- Please understand that being sick doesn't mean I'm not still a
human being. I have to spend most of my day in considerable pain and
exhaustion, and if you visit I probably don't seem like much fun to
be with, but I'm still me stuck inside this body. I still worry about
school, and work and my family and friends, and most of the time I'd
still like to hear you talk about yours too.
-Please understand the difference between "happy" and "healthy" .When
you've got the flu you probably feel miserable with it, but I've been
sick for years. I cant be miserable all the time , in fact I work
hard at not being miserable. So if you're talking to me and I sound
happy, it means I'm happy. That's all. It doesn't mean that I'm not
in a lot of pain, or extremely tired, or that I'm getting better, or
any of those things. Please, don't say , "Oh, your sounding better!"
I am not sounding better, I am sounding happy. If you want to comment
on that, you're welcome. Please understand that being able to stand
for ten minutes doesn't necessarily mean that I can stand up for
twenty minutes ,or an hour. And, just because I manage to stand up
for thirty minutes yesterday doesn't mean that I can do the same
today. With a lot of disease you're either paralyzed, or you can
move. With this one it gets more confusing.
-Please repeat the above paragraph
substituting "sitting", "walking", "thinking", "being sociable" and
so on.... it applies to everything. That's what FMS/MPS does to you.
-Please understand that FMS/MPS is variable. It's quite possible (for
me, its common) that one day I am able to walk to the park and back,
while the next day I'll have trouble getting to the kitchen. Please
don't attack me when I'm ill by saying "But you did it before!" if
you want me to do something then ask if I can. In a similar vein, I
may need to cancel an invitation at the last minute, it this happens
please do not take it personally.
-Please understand that "getting out and doing things" does not make
me feel better, and can often make me seriously worse. Telling me I
need a treadmill , or that I just need to loose (or gain) weight, get
this exercise machine, join this gym, try these classes... may
frustrate me to tears, and is not correct....if I was capable of
doing these things , don't you know that I would? I am working with
my doctor and physical therapist and am already doing the exercise
and diet that I am suppose to do. Another statement that hurts
is, "You just need to push yourself more, exercise harder..."
Obviously FMS/MPS deals directly with muscles, and because our
muscles don't repair themselves the way your muscles do this does far
more damage than good and could result in recovery time in days or
weeks or months from a single activity. Also, FMS/MPS may cause
secondary depression (wouldn't you get depressed if you were hurting
and exhausted for years on end!?) but it is not created by
-Please understand that if I say I have to sit down/lie down/take
these pills now, that I do have to do it right now...it cant be put
off of forgotten just because I'm out for the day (or whatever).
FMS/MPS does not forgive.
-If you want to suggest a cure to me, don't .It's not because I don't
appreciate the thought, and it's not because I don't want to get
well. It's because I have had almost every single one of my friends
suggest one at one point or another. At first I tried them all, but
then I realized that I was using up so much energy trying things that
I was making myself sicker, not better. If there was something that
cured, or even helped , all people with FMS/MPS then we'd know about
it. This is not a drug company conspiracy, there is worldwide
networking (both on and off the Internet) between people with
FMS/MPS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it,
but don't expect me to rush out and try it. I'll take what you said
and discuss it with my doctor.
In may ways I depend on you....people who are not sick....I need you
to visit me when I am too sick to go out....Sometimes I need you to
help me with the shopping, cooking or cleaning.
I may need you to take me to the doctor, or the physical therapist. I
need you on different levels...you're my link to the outside
world...if you don't come to visit me then I might not get to you .
...and, as much as it's possible, I need you to understand me.
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