Why Trying Harder Doesn't Work for FMS/CFIDS

I received this compassionate article from a friend. It has some helpful thoughts regarding Chronic Fatigue Syndrome.
My own story of having CFIDS is at http://www.fms-help.com/fatigue.htm - Dominie

A LETTER FROM A FRIEND WHO SUFFERS WITH CHRONIC FATIGUE SYNDROME

(Why Trying Harder Doesn't Work for CFIDS)

http://www.chronicfatigue.org/CFS%20Friend.html

(This letter was written at the behests of several of our Chronic Fatigue
Patients. Since it is almost impossible for the non-CFS person to understand
the feelings of these individuals, we have attempted to bridge this gap with
this monograph. We suggest you download it and give a copy to all who doubt
your suffering.)

We live in an age when the sensitivity toward, and compassion for,
individuals who have disabilities of all types is at a high level.
Unfortunately, we find that many people have a great deal of trouble
extending this same understanding to those suffering with Chronic Fatigue
Syndrome.

The reasons for this apathy toward the plight of these individuals are not
difficult to understand. Usually the CFS patient does not look sick to the
unpracticed eye. Even doctors are frequently very dubious about the validity
of these patient's condition since all their test results are usually in the
normal range. After all, if a doctor can't find anything wrong with them,
can they really be sick? We all get tired, but we don't go around making it a
lifetime avocation. Wouldn't it be best for these people to just forget
about their "illness" and get back to work like the rest of us? If they are
depressed, why don't they just take some Prozac and embark on a good active
exercise program? Isn't this condition just a form of "cop-out" for
laziness? After all, if it is a weak adrenal, why don't they just take a cortisone
drug and get it fixed up?

These are only a few of the many reasons that CFS patients have not, over
the years, been treated with the respect and deference their condition warrants.
The main reason for this mis-perception regarding the CFS patient is the
fact, just now being accepted by the more advanced medical researchers, that
those individuals who are susceptible to CFS are not like the rest of
society and, therefore, can not be accurately judged by the criteria of the
majority. They are not constructed like the rest of us and yet we expect them to react and respond as if they were. Then, when they can't do so, no matter how hard they try (and they really do try), we condemn them as being lazy, neurotic
or malingerers.

The truth is that they, on the whole, are some of the most ambitious and
motivated people in the world, but, unfortunately, they were born with a
glandular system that does not respond to stress as does that of the
majority. When most of us are under stress, our gland system will cause a
rise in blood pressure and a "fight or flight" reaction. This type of
manifestation is normal for most of us and continues as long as we live
unless we seriously abuse ourselves.

Those individuals who are prone to CFS have an entirely different reaction.
While their glands may react like those of the majority in their early
years, the time soon comes when their gland system can no longer support such a normal reaction and instead of a rise in blood pressure in response to
stress, the blood pressure will actually fall upon overexertion or stress.
This counter-reaction was discovered many decades ago by alert
investigators, but was generally ignored until just recently when physicians at Johns Hopkins "rediscovered" it.

While this deviation in normal stress related blood pressure response may
not seem to be an important reaction at first consideration, it is, in essence,
the key to the entire nature of the CFS person. What it demonstrates, in a
loud clear language, is that the CFS patient is not a person who is likely
to react to anything like the rest of us. In fact, they frequently tend to
react just the opposite to the way most of us do to almost every type of human
situation. Since they are not like us, do not feel or respond like us, any
attempt to judge them by our standards is not only doomed to failure but
usually does a great disservice to the CFS person.

If we reconsider our assessment of these CFS individuals in light of our new
understanding about their inherent nature, we can now see why they cannot do
as we might do and achieve the same results. If they are to survive, they
must learn to manage their lives according to the nature and character of
their own unique glandular makeup.

Answers to the Questions We Have Posed

The CFS patient usually does not look sick because they are not really
"sick" as we generally use that term. CFS is not a sickness in the usual meaning of the word. It is, rather, a weakened condition of the glandular system
(particularly the adrenal gland) that only manifests its obvious symptoms
when the endocrine glands cannot send forth sufficient vitality to meet the
immediate needs of the individual. The CFS patient cannot hide their
condition to the practiced eye however. The eyes may well be the windows of
the soul, but they are also the windows to the glandular system to those who
know what to look for and who are willing to not only look, but to see. For
those who are alert (and know what to look for) the CFS patient stands out
in a crowd as if they had the red "A" of Hester emblazoned on their bosom.

CFS patients very frequently have normal standard blood chemistry tests. The
reason for this is given above. These individuals are not sick in the
ordinary sense. That is, they may well not have the kind of conditions that
plague the majority of humanity; diseases for which the regular blood
chemistry tests were created. There are, however, special tests available
that will readily demonstrate the true nature of their condition, but these
are not a usual part of the general medical workup. Why not? Because, almost
all standard medical tests are wisely directed at the needs of the majority
of patients. Given the medical needs-vs-cost argument so rampant today, it
is only reasonable to expect this approach from the medical community. However, these neglected CFS patients do need, and deserve, a champion and it has been my pleasure to humbly serve in this capacity for over four decades now.

One of the most hurtful comments to a true CFS patient is that they are
malingering. That is, that they are not really feeling as bad as they let on
and if they just would "push" themselves a little more they would feel fine
once again. Nothing could be further from the truth. We need to be wary of
the age old misconception that "everyone thinks and responds as we do."
While in general life this concept is dubious, with CFS individuals it can lead to
serious misunderstanding. CFS patients just do not react or respond like the
rest of us. I know I have stated this dictum several times before, but it
cannot be repeated too often, since it is the "key" to understanding and
helping all CFS individuals. The world, as we know it, was built by non-CFS
people. Efforts to fit CFS patients into our world is like attempting to
force a square peg into a round hole. CFS patients, with proper treatment,
can, and must, learn to live in a world not designed for them, but, along
the way to this goal, they need the help and understanding of all those around
them, who, hopefully, will never have the misfortune to learn the
devastating nature of this condition from personal experience.

Drugs like Prozac can only disguise the symptoms of the CFS patient. While
there may be a place for such medication in the rare CFS patient for a short
time, we generally find that all such drugs tend to worsen the CFS condition
in the long run since they create a stress that further weakens the
patient's glandular system.

One of the cardinal facts concerning the underlying nature of CFS is that
those things that depend on the reactive ability of the body for their
manifest benefit usually make the CFS patients worse because they have lost
much of their innate ability to react properly. This is especially true
regarding exercise. That which builds the muscles and strength of the
average person only further weakens the CFS patient. However, as the CFS patient is treated and the glandular system improved, a carefully monitored set of
exercises can be suggested, but these need to be prescribed by a physician
well versed in treating CFS patients and by no one else.

After successfully treating thousands of CFS patients, I can state one fact
without the slightest fear of contradiction. They are not unproductive
because they want to be. The most difficult task I have with CFS patients is
getting them to rest sufficiently to allow for the needed regeneration of
their glandular Systems. Usually, during the course of our treatment, as a
CFS patient gets even a modicum of energy, they will do all they can to make
up for lost time, either at their job or at home. In this orgy of energy,
they will usually continue until they completely exhaust themselves.
Actually the true CFS patient is one of the most ambitious individuals you will ever meet. The problem is, of course, that their glandular system, and therefore
their body, cannot keep up with the activity of their mind and desires. Can
you imagine a more frustrating situation? Is it any wonder that, at times,
CFS patients may seem a little testy. Who can say how we might respond with
a similar albatross around our neck?

Almost everyone has heard of the wonders of cortisone. If these CFS patients
have an adrenal gland weakness, why not just give them cortisone and be done
with it? While cortisone is a very useful drug for many things, it is only
of rare help in the treatment of CFS patients.

Since these patients have a functional weakness of the adrenal gland, not a
pathological one, cortisone will tend to weaken their adrenal gland further
if it is used for any length of time. The normal adrenal gland excretes some
forty-plus substances required by the body and cortisone is only one of
these forty. When it is administered to the CFS patient, it tends to suppress the
formation and distribution of the other two score substances.

How Do We Know That a Person Has CFS?

In my early days of treating this condition, it was very difficult to
differentiate CFS from a wide variety of other weakening conditions. We now
have various new tests (such as the Adrenal Stress Index) that allow us to
make a very definitive diagnosis without fear of mistake. Not only do these
tests tell us if an individual has CFS but, more importantly, exactly the
specific stage of this condition that the patient is experiencing. Yes, CFS
does meander through several stages as the glandular system, in its weakened
condition, goes through various gyrations attempting to meet the needs of the CFS person. It is essential for the physician to understand the specific stage of the condition his patient is in, because the treatment must coincide with the stage or it may have an adverse effect on the patient. It is this fact that makes many physicians so reticent to treat CFS patients. There is no such thing as a
standard treatment that will fit all CFS patients or even the same CFS
patient at a different stage in their glandular progress. Chronic Fatigue
Syndrome is not treated very successfully by those who are not willing to
devote most of their healing efforts to the care of these neglected souls.

What is the Treatment CFS Patients Need to Get Well?

Our basic treatment for CFS is three fold. First, we must do whatever is
necessary to minimize the stress in the life of the CFS patient. Toward this
end, the physician must always remember that stress is often not so much
what happens to an individual but how they perceive that happening. Stresses can be physical, mental or emotional. Usually, physical stress is the least
harmful and emotional the worst. In a severe advanced condition, the patient
may even find it difficult to do the most essential daily tasks. The simple
task of brushing one's teeth may create sufficient stress to force a CFS
patient to rest for hours. In the most severe cases, the patient may become
totally bedridden. The obvious goal of a wise physician is to control a CFS
patient's stress level early on so that they do not reach these levels of
severity.

Second, we search carefully for and correct any concomitant medical
conditions that may be acting as unseen stresses on our patient. The CFS
condition produces immune system weakness that opens the door for
opportunistic organisms and adverse conditions to ravish the body. These
must be tracked down and eliminated before full recovery is to be expected.

Third, the glandular system needs to be supported by passive and by active
treatments to help the body regenerate both the immune and the glandular
systems. This is the most important and, yet, the most difficult part of the
entire therapy. This must meet the stage of the patient.

Passive Treatments use those special modalities that require no effort on
the part of the patient or their body to benefit. The Magnatherm is a prime
example of this type of therapy. It helps organs to regenerate with no
reaction needed on their part. In late stage patients, this is often the
only form of therapy that can be tolerated during the beginning of their
treatment.

Active Treatments are those therapies that require the body or the patient
to "react" to the therapy. The problem with so many CFS patients is that their
body's ability to react has been deeply compromised by the condition to such
a degree that such active treatments may actually place a greater stress on
these patients than these therapies correct. It is up to the knowledgable
physician to carefully guage just how much active treatment, and which
treatments, his patients can properly utilize at any one time. This is the
true art of treating CFS and it is not to be easily or quickly learned. At
our Healing Research Centers we have been doing this for nearly forty years
and still find it often difficult to calculate, ahead of time, the degree of
active treatment any specific patient will be able to use to their
advantage.

How Long Will the Treatment Take?

By now, it should be obvious that the time needed to successfully treat a
CFS patient depends entirely on the stage of the patient's condition. In the
early stages, we can often have the patient productive in a few weeks. In
the truly severe cases (what I like to call chronic CFS) it may take several
months to a year or more for the recovery desired. The recovery time also
greatly depends on our ability to have access to the patient. If we are able
to bring the patient into our Sanctuary, where we have complete control over
most of their stress quotient, we can usually have them on their feet in the
shortest possible time. If we have to work so that we only get to see the
patient occasionally and have no real control over their life stresses,
obviously the needed improvements will be much slower in manifesting.

You were given this monograph because you will be interacting with someone
who has CFS or one of its many related conditions. We trust that this
exploration and explanation of these really very nice and dependable people
will aid you in your future relationship. When working with CFS persons,
please remember that they do not react the same as you do to similar
situations. When their adrenal gland has reached the end of its vitality,
the CFS person will wilt like a balloon stuck with a pin and their vitality will
not return until they are able to take time to rest thus allowing for the
needed regeneration of their adrenal gland. Your understanding and
compassion, at times like this, will be greatly appreciated by all CFS
persons.

There is much more I could write about the "care and feeding" of these very
special friends of mine, but I must not let this effort get so long that you
will not have the time to read it carefully. However, if you have further
questions on some phase of our treatment or on the nature of a specific CFS
person, feel free to call me at 1-800-779-3796 or 1-800-300-5168.

============================================

This is Dominie again.....I hope you enjoyed this article as much as I did! The person
who wrote it is obviously well-informed and compassionate. FMS
(fibromyalgia syndrome) and CFS (chronic fatigue syndrome) are not
illnesses that can be conquered by trying harder! If anything, the
opposite approach works much better. This isn't easy for us, because most
people with FMS/CFS are hard-working, responsible, Type A "go-getters."
To read my personal story of finding relief from fibromyalgia and chronic
fatigue syndrome, please visit my homepage at http://www.fms-help.com and click on the links.

II Corinthians 1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.