Aug 15, 2006

On pain....

I wish to help raise awareness of painful "hidden" disabilities so that those who suffer can possibly be better understood and thus treated with more dignity.

In my last attempts at
remaining employed i was often humiliated by discussion of my restroom habits by my superiors, being reprimanded for absences or needs for unscheduled breaks, and even being told that i "should not" be suffering that much because one of my superiors had the same condition and it didn't cause her to miss work. That was IBS. At times the pain was so severe that i passed out and was even taken to emergency.

When i also became afflicted with osteoarthritis of the spine, radiculopathy (trapped nerve) and (as i later found out) fibromyalgia, it became impossible for me to remain employed at all.

Before fibromyalgia was considered, i was told that i "should not" be feeling as much pain as i did with the degree of disc degeneration in my spine. So i was left feeling extremely odd and somewhat shamed, if i shouldn't be hurting this much then why do i ??? At times i feel as though i've been beaten all over with a mallet and stuck with kitchen knives in my neck and back. I was put through the indignity of being denied twice by Social Security for my claim of disability, being told by their staff who didn't even see me that i could sit for x amount of time, could lift x amount of pounds, etc. when i absolutely could not and was instructed by my doctor not to. After months of dealing with that, having to hire an attorney and appear at a hearing before an administrative law judge, it was found without a doubt that i could not be employed. Later when the pain spread to my knees, elbows, jaws, fingers and feet, more tests were performed to rule out rheumatoid arthitis, lupus and similar conditions. When those came back negative, fibromyalgia became more probable by exclusion. It can be merciless at jabbing it's victims just about anywhere.

As with osteoarthritis, fibromyalgia symptoms vary from day to day and from person to person. Often both occur together, which is interesting. Although osteoarthritis shows up on MRI's and/or x-rays, with fibromyalgia the diagnosis is a process of exclusion of other conditions. Over the last decade i've had various physical and emotional symptoms that went "unexplained" by my medical care providers. These were often dismissed as "stress" and "depression" and "menopause" and i was given various prescriptions that didn't help and had intolerable side-effects, and told to meditate. As nice as meditation can be, it didn't cure the symptoms.

Today, i see all of the seemingly-unrelated symptoms i've had over the years as pieces of a puzzle that finally fits together and spells
Fibromyalgia. I want to remove the cloak of shame that i have felt for some time now. I did not ask for this nor did i make it happen. But i want to find something positive in it, and use that to reach out and help someone else.

Please google "fibromyalgia" and learn more about this disease.

Here is a letter that i found on a site which gave permission to use it elsewhere.
I found it very touching.


To Whom It May Concern:
I am writing this morning out of great concern about the condition of P----.
She has been my loving companion for five years. During this time I have
witnessed the changes in her life, due to her suffering from Fibromyalgia
and Chronic Fatigue Immune Dysfunction Syndrome. This devastating disease has
robbed P--- of her vitality and energy, as well as her enthusiasm for life.
As the pain increased, the quality of her life decreased. Constant suffering
from pain is a terrible burden which overshadows all other aspects of life.

The inspiration for me to write this, as I have never written about this
before, comes from an article in this morning's paper. The article is about
the latest individual, assisted in suicide, by Dr. Kevorkian. The woman
suffered from Chronic Fatigue Immune Dysfunction Syndrome and muscle pain
which was obviously Fibromyalgia. The woman's father is quoted as saying,
"My daughter had intractable and unrelenting pain. I hate losing my only
child, but there are some things in this world worse than death".

The news reports the medical community's response to the woman's condition
as "No evidence of disease" and "not a fatal disease", - typical responses
faced by the sufferers of this disease from virtually everyone they tell
about their problems. I myself was skeptical at first about a disease with
no outward signs. However, I am now convinced about the severity of this
condition and the extremely debilitating effect it has on a persons life. I
would like to implore everyone in the medical community to take a longer
look at the way they are treating this disease. The "Pain Management" method
of telling a patient to simply try to live with the pain, with little or no
assistance, combined with the philosophy that the accompanying depression is
a cause of the pain rather that a symptom is very ineffective and actually
worsens the patients condition. The more pain, the more depression. It
starts off as good days and bad days, then becomes good days and bad weeks
until the quality of life is so diminished that a solution such as Dr.
Kevorkian's seems the lesser of two evils and just an end to the pain, not
to life.

P--- is constantly forced to balance the amount of things she can do in one
day, against the amount of pain she will suffer the next two or three days.
The idea that the possibility of addiction and subsequent withdrawal from
pain medication is a greater risk than the benefit in quality of life that
the absence, or at least lessening of daily pain will bring is a fallacy.

Obviously, everyone would like a better solution or cure than daily
medications. I know that P--- would gladly trade medication for a cure, but
to expect a person to just live with ever increasing pain and depression
until a cure is found is unacceptable.

This disease doesn't physically kill you like AIDS or cancer; it just makes
you hurt so bad that you wish it would. This disease doesn't disfigure or
maim it's victims outward appearance; it just adds to the embarrassment and
emotional pain of people disbelieving that they are even ill on top of the
severe crippling pain. The stress caused by the combination of these factors
adds to the insomnia and depression and the cycle continues in a downward
spiral until, as stated before, that Dr. Kevorkians solution seems the
lessor of two evils.

I would like to conclude this letter, as I fear I am sounding redundant,
with a plea to everyone who is aquatinted with sufferers of this disease,
whether you are a family member, friend, or a physician treating them: treat
them with kindness, compassion, and understanding. This is truly a horrible
disease and as crippling as any, so believe them and help them regain their
lives. Thank you for you time and patience in reading my rambling thoughts;
it is only because I feel so strongly about this I have trouble writing this
down cohesively.

Thank you for Your Time,

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