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Taking the Misery and Mystery out of Fibromyalgia
By Myriam Maytorena, M.Ed.
Fibromyalgia is considered by many to be a fairly new
disorder. However, the truth is it has been around for a
long time, it is only lately that scientists and medical
experts have been able to name this compilation of symptoms
and to lump them together under the name of Fibromyalgia
Syndrome (sometimes called FMS).
To a person like me, who has suffered from this misdiagnosed
disorder for more than 30 years, there was no question that
something seriously was wrong with me. However, for years,
like many others that suffer from this disorder, I went from
doctor to doctor seeking an answer and relief. What I found
was frustration, misdiagnoses, confusion, insult (and
personal injury at the hands of one osteopathic physician)
and was not able to discover what was really wrong till my
sister Glenna read an article in Prevention Magazine that
lead me to solve the mystery of my suffering.
Fibromyalgia syndrome (or fibromyalgia) is a chronic
disorder associated with widespread muscle and soft tissue
pain, tenderness, and fatigue. A person with fibromyalgia
will experience pain when up to 18 specific areas called
tender/trigger points are pressed. Pushing carefully on
these specific trigger points during an examination causes
discomfort or sharp pain.
The cause of fibromyalgia is not known. Fibromyalgia has
been recognized as a medical disorder only since the 1980s,
although there is evidence it may have existed for
centuries. Some believe that the cause of FMS is the result
of a sleep disorder. In the incidence of FMS research
indicates an interruption of the sleep cycle prevents the
sufferer from moving from stage 3 REM (rapid eye movement)
sleep to stage 4 where the body relaxes and thus tension is
maintained in the nerves and muscles. Others indicate that
chronic pain keeps one from sleeping and thus exacerbates
muscle and nerve tension and manifests depression and
anxiety. It is like a chicken and egg kind of event -- does
the sleep disorder create the pain or does the pain create
the disorder? One of the main contributors to FMS is
stress. There is nothing that will cause an FMS flare-up
faster than stress in one's personal or professional life.
The pain of fibromyalgia is more than normal muscle aches
common after physical exertion. Fibromyalgia often can be
severe enough to disrupt a person's daily work and
activities. I am often incapacitated for weeks and may have
to use a cane to walk. I have known some that had it so
severe that a wheel chair was required for mobility.
Fibromyalgia can be difficult to diagnose because its
symptoms are similar to many other disorders and diseases.
There are no lab tests to diagnose fibromyalgia. It is often
diagnosed after other conditions have been ruled out.
Fibromyalgia is diagnosed when:
A person has had widespread pain for at least 3 months. To
be considered "widespread," the pain must be both above and
below the waist and on both sides of the body. In one time
of flare-up I was in bed for more than six months.
At least 11 of 18 specific tender points are painful when
pressed. (Because symptoms vary widely from person to
person, some people with fibromyalgia may have fewer painful
tender points.)
Women are more likely to develop Fibromyalgia than men and
the average age of on-set is between 30 and 50. However,
with age the possibilities increase. However, the onset can
be at any age. There is some indication that what used to
be called growing pains in children could be a form of
fibromyalgia.
At a basic level, most people with fibromyalgia are
suffering from diffuse muscle and tendon shortening, driven
in part by multiple nerve compressions throughout the spine
and limbs. Spinal origins from the neck, mid back and low
back figure prominently in its source of pain. It seems
deep spinal muscles cause deep nerve compressions and
traction that cause further muscle problems in the spine,
limbs and head. Pain can be directly from the muscles
crushing a joint, or from pain referring into the joint from
the spine. Typically both exist at the same time. Headaches
can exist from referred pain from the neck but also from
local muscle problems around the head.
FMS has basically three components that feed into each other
and exacerbate the condition: A. Chronic Pain, B. Sleep
Disruption, and C. Anxiety and/or depression.
When managing FMS (there is no cure only management
techniques at this time) one must take a three pronged
attack....
1. Manage and treat Chronic Pain,
2. Manage sleep disruption, and
3. Manage and treat anxiety and/or depression.
While one hopes to be able to work with one's health care
provider, it is important for the person who has FMS to
develop control over treatments, interventions and
management. It is very easy when one experiences such a
chronic syndrome to buy into some really goofy ideas for
healing and treatment. I am a believer in the effectiveness
of complimentary medicine and use it in my own treatment
plan. However, I also realize the importance of traditional
western medicine and medication in the management of this
syndrome.
The biggest fallacy that I found in management of my FMS was
that exercise would make it all better. In other words, I
was told that even though I could hardly walk without a cane
if I would just workout everyday or three times a week, my
symptoms would go away. All this did was make me feel
guilty if I did not go to the gym and at no time in my
experience did any type of physical or aerobic exercise
reduce my pain. In fact, the opposite was often the case.
However, I did discover that stretching did help with the
disorder. And, when I stretched in the morning before I got
out of bed, I was able to move with greater ease and,
somewhat, reduce my level of pain. I was then able to do
other exercise, which was good for my heart and other
lifestyle issues.
The first step to controlling FMS symptoms is to control and
manage stress. Choosing to value simplicity in one's life
and opting for less physical, emotional or mental stimuli or
chaos will decrease flare-ups. Good cognitive behavioral
management skills learned with the support of a cognitive
therapist will help. These are the skills that are taught
in pain management clinics. Controlling stress means
controlling one's reaction to internal and external events.
Meditation is any of the forms available will significantly
reduce stress and the pain associated with FMS flare-ups.
Every salesperson or believer in supplements was ready to
cure my disorder with their latest passion. While I am all
for supplements if one needs them because of deficiencies,
choosing a healthy diet takes care of most deficiency.
Except in one incidence. MSM a naturally occurring sulfite
helps in reducing or managing pain. There is no proof that
it cures FMS but it does significantly reduce painful
flare-ups. Oh, I forgot another one. A alcohol rub that
has been infused with marijuana will relieve pain when
applied topically. However, it is kind of hard to get
marijuana legally for medical purposes. MSM is plentiful,
works and is fairly inexpensive. I have not experimented
with topical applications of MSM. [As a side note, my dog
Alice found great relief from a torn cartilage and could
walk and run easily when she received her MSM supplements.]
Anything that reduced inflammation can sometimes be of help.
Although, I have never found relief when I used traditional
pain medications including aspirin, ibuprofen, codeine, and
so forth in managing the discomfort of FMS. I have found
cold water baths and ice packs will help. Some folks find
that heat works better. It is really a personal matter as
to which works better.
Natural herbal supplements for depression have had no effect
in my case. Some people do find relief with the use of St.
John's Wart. Small doses of allopathic antidepressants do
help with the sleep disorder component, which leads to pain
relief.
Perhaps, the most difficult issue facing those who suffer
from FMS is finding a correct diagnosis and learning to
accept that the diagnosis is real. After years of going
from doctor to doctor I had come to believe that my
condition was a result of a psychological or psychosomatic
disorder. In fact, sometimes when I feel good (like when I
remember to take my MSM regularly, reduce my stress, stretch
and move and do happy things) I think that my FMS is all in
my mind. However, when the flare-up occurs again and I am
bent over in pain I realize that it is not an imaginary
disorder and I get back into my mode of controlling my FMS.
As a final note, if others do not understand that you are
suffering from real pain and discomfort it is important to
take note of yourself from their point of view. If you are
the "average" FMS sufferer you probably look very healthy in
a plump kind of way. You are probably above average
intelligence and creative. You might even be rather
spiritual or involved in empathetic health activities. You
might appear to be a bit "high-strung" as anxiety is often a
part of FMS. It helps when those in your personal world are
not sympathetic or understanding of your condition, to seek
out a support group of people who have to deal with FMS on a
daily basis. Take a proactive approach and educate those
who are close to you about the realities of FMS. If they
are openly disrespectful and do not want to be supportive of
your condition and you have been unable to cope with their
behaviors, consider taking a course in assertiveness
training. The skills learned in a course like this will
help you take control of your life and your disorder and
empower you when dealing with family, co-workers, and health
care providers. Remember, only you know how you feel. Do
not negate your suffering or your pain or you path to a
healthier and more comfortable life by using the uniformed
feedback of those who do not really understand FMS.
Copyright Myriam Maytorena, M.Ed. is a counselor and spiritual coach.
  
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