Re: an article I wrote about my FMS

wow, I found myself nodding in agreement throughout this,
Katie.............I know that I'm one of the lucky ones to have found a
doctor who does know about fibromylagia and treats me as though I'm a
co-partner with my treatment. and even at work, I was put on a supervisory
desk job when new management felt I could no longer meet the needs of being
an assistant director of nurses, without a loss in pay or anything. So I do
know I'm blessed. I have 14 years with this company and they remember
when I was the one to go to with a problem. Now that I have problems of my
own, they help me find solutions. And my sons, they help me with whatever I
need done at home but I don't take advantage of them, I do whatever I can
whenever I can. I hope they never get tired of their old mom.........

Carol J

"Katie" <vfolle@xxxxxxxx> wrote in message
news:43c15264$0$1149$5402220f@xxxxxxxxxxxxxxxxxx
Below is an article that I originally wrote in French and then translated
into English for my mother. My mother tongue is English, but since I live in
a french-speaking country I sometimes write articles for a local newspaper
sold by homeless and destitute people.

Anyway, it tells my whole story with fibromyalgia. I hope it will be
interesting and useful to some of you.

All the best
Katie

____________________________________
FIBROMYALGIA FROM THE INSIDE

You may not read this article to the end because it concerns pain. Usually,
we would rather avoid hearing about other people's pain. Perhaps that is
because pain is subjective and because if someone we know is in pain,
there's
not much we can do about it.



In spite of this, I am going to tell you about my experience with chronic
pain. It was suggested to me that I write this for therapeutic reasons and I
accepted because I feel it is not possible to keep silent any longer. I hope
that after reading this, healthy people will better understand fibromyalgia
and also that those who suffer from this disease will be encouraged to tell
their own stories.



The word fibromyalgia may have caused to you stop reading already. It is a
word that often causes suspicion and prejudice. There are still people who
believe fibromyalgia is a diagnosis for malingerers or complainers. Perhaps
out of their own feelings of frustration, doctors would have us believe
fibromyalgia is "all in our heads". Too often medical professionals seem to
doubt our word on the subject of the intensity of our pain.



It is common to hear that we "look good". This is one of our most perverse
symptoms: looking well in spite of chronic pain and fatigue. Strangely, to
ourselves in our own mirrors, we look ill and reach for the blush and other
cosmetics.



A few years after the initial diagnosis, we realize that we cannot spend the
rest of our lives in bed, so we go out, we smile, we even laugh. We try to
have a life, or something resembling a life. This is when people start
wondering if we are really ill. We are often punished in this way for what,
after all, is simply our courage and determination.



Although fibromyalgia was officially recognized in 1992 by the World Health
Organization, the medical community has yet to find its cause and treatment.
Theories abound however. Some researchers believe that the brain amplifies
pain signals, others believe fibromyalgia may be a virus or an intoxication.
Since it affects a large majority of women between the ages of 30 and 50, it
could be caused by hormonal imbalance.



>From the inside it feels like extreme tension and an overload of stress. I
sometimes call it "perma-stress" because it feels like being stressed on a
permanent basis.



More objectively, fibromyalgia's main symptoms are spasms and pain in the
muscles, tendons and ligaments accompanied by profound fatigue. The pain can
be aching, stabbing, burning and can travel around the body in a matter of
hours or affect one part of the body for weeks. Other common symptoms are
headaches with nausea and vomiting, urinary urgency, irritable bowel,
depression, anxiety, memory and concentration problems, muscular weakness,
tingling, numbness, sleep disorders. But this is the sort of thing you can
read about in any article on fibromyalgia. In this article, I intend to
describe fibromyalgia from the inside.



You're still here and I thank you from the bottom of my heart. There may be
only a few of us now. People who want to know how a person lives with
fibromyalgia. I don't want to generalize. I know that even if we all have
much in common, each person with this illness has their own story. I also
know that there are much worse illnesses and I don't want to complain
unnecessarily, but I also know that other people with FMS will agree that we
need to tell our stories.



Mine began in 1998 with intense fatigue. I didn't know I could be so tired
without dying. For three months I spent most of my time asleep. Sometimes
the idea of taking a shower or even cutting my fingernails seemed to demand
too much energy. I was diagnosed with depression but I didn't care, as long
as they let me sleep. After three months of this I tried to go back to work
but only managed a few days. Three more months of rest and I went back to
work part time.



I was pleased. I had been through something very frightening. It had been
something approaching my idea of what dying would be like, and here I was
back at work and back to normal life. What a relief! But I wasn't aware that
my immune system was weakened and that I would catch all the flu and
bronchitis that came my way. I missed more work because of respiratory
infections and then a very bad case of flu that was going around.



I ended up resigning from my job because of the attitude of my fellow
workers. I knew they were under stress, but I was shocked to realize they
were harassing me and I was in no condition to fight them. They had lost all
sympathy or compassion if they had ever had any.



Around that time I began to have acute pain in one of my hips. I could
hardly walk, so I saw a doctor who recommended I see a rheumatologist. It
was the rheumatologist who diagnosed fibromyalgia.



At first I didn't really believe it. Especially when the pain in my hip went
away. I had moments when I felt normal, even though the difficulty I had
moving around gave me the impression I was wearing a too-tight diver's suit.
But sometimes it seemed to me I had had symptoms of fibromyalgia for at
least 30 years. I had always thought they came from stress. I had often
struggled with loss of balance, dizziness, painfully tense muscles,
headaches. It seemed I had always been easily tired out and stressed too.



But the illness got worse. Not only my hips, but my shoulders, upper back
and all along the outside of my arms felt as if tendons and ligaments were
pulling, tightening up to breaking point. I couldn't even stretch without
something getting stuck. One day, I fell and hit my head because my arms
were too tightly held to block my fall. I was taken to the hospital for
stitches in my head. When I got home, I realized that when I changed
positions from sitting to lying and vice-versa, the world swirled around me
uncontrollably. The tensing up from fear caused even worse pain in my
shoulders. The rheumatologist gave me cortisone injections in my shoulders
which helped temporarily. It was a nightmare that lasted four months before
I no longer experienced vertigo with each inclination of my head. I held on
tight, but I often wished I were dead during those 4 months.



Then came a few years where I hardly went out at all because I never knew if
my hips, my legs would let me walk. I was afraid that I'd get stuck
somewhere and not be able to get back home again. My shoulders burned almost
permanently and I fell asleep several times a day. I just plopped over onto
a cushion and slept. Often after one of these short naps the pain seemed a
bit better, but then it started up again.



I did a strict minimum: laundry, shopping, cooking, walking the dog. I
couldn't really play with my dog any more because bending over, picking up
and throwing a stick hurt too much. That saddened me. It seemed my life as
I had known it was over for good.



I had such bizarre symptoms : if my husband hugged me too hard, a shoulder
could stay stuck and painful. Once he managed to unblock my shoulder by
hugging me from the opposite side! If I were in a car or bus that hit a
bump, my shoulder could easily get stuck and very painful. There was no
telling how long it would stay painful. If I had a cough, the muscles in my
upper back pulled so hard it made me cry.



The rhumatologist had suggested I do water aerobics and that was very
helpful. Moving in the water is so much easier because your body is
supported from all sides. I feel hardly no pain at all in the swimming pool.
However, it's important to find the correct amount of exercise. Too much
physical exercise can cause a worsening of the symptoms of fibromyalgia.



My few activities tired me out as if I had worked ten hours a day. In spite
of that, I did my best to continue doing my usual chores at home so that my
husband would not have to feel inconvenienced by a life with an "invalid".
Why? Was I afraid that he would leave me or was it just that I needed to
continue to feel useful in some way ? There were times when I bitterly
resented having to go on doing chores when I felt so awful, but I see now
that it was a question of pride for me, and of keeping my morale. It is
important to invent a new life, a new routine.



In spite of it all, sometimes I told myself I was lucky to have fallen ill
in the Internet era ! I could order groceries online and I did use that
service many times, especially when we lived in an apartment building with
no elevator! Also thanks to Internet, I felt less lonely. Even if I consider
"cyber friends" and "virtual communities" a little bit unhealthy and even
dangerous, for someone stuck at home they can add up to having a social
life! More important, on the Internet, I could research Fibromyalgia and
find out what other people in my situation were doing to cope.



The bad news was that painkillers do little or nothing for the pain of
fibromyalgia. Some patients go so far as to use morphine or Oxycontin, but
there is a danger of developing tolerance and having to increase dosages,
not to mention the hallucinations that many experience with such strong
painkillers.



More bad news : a majority of women with fibromyalgia put on quite a bit of
weight. I was one of them and it caused me a lot of suffering but didn't
surprise me as I have always been the type who has a hard time keeping her
weight down. Strangely I have gained weight without eating more, but doctors
don't believe me about that either. In the beginning of this illness, I was
too preoccupied to even realize I was putting on weight. Getting through
another day was my priority.



I was afraid. Afraid that the pain, the tension, the weakness would worsen
and become unbearable. I was afraid I'd need to walk with a cane or even
find myself in a wheelchair. Afraid that I would never be able to lift and
carry even 5 kilos again. I always pretended, in front of my husband, that
everything was normal, but almost every night I went to bed hoping I
wouldn't
wake up in the morning.



Reading articles on fibromyalgia, I learned that we often lose all or most
of our friends. "Not my friends" I told myself. But yes, even my friends.
Not because they are inconsiderate and self-centered, but because life goes
so fast, people are so busy, always running here and there. And if you are
not there in their path, right there in front of them, they forget about
you. It was a hard fact, a situation that I had not foreseen, but logical
when you think about how fibromyalgia slows you to a crawl and how fast time
flies for those who are still in the race.



There's also the fact that friends are not used to you not being able to
invite them over for dinner because you're too tired or you don't know if
your back will be hurting on that day. Even spending an afternoon with
someone talking over tea can be too tiring because being a good listener
demands energy.



In the attitude of others, what was the most hurtful for me was that no-one
ever thought to say the words I needed to hear : "I'm sorry you have this
illness, you don't deserve this." Why the notion of "deserving"? Because
fibromyalgia seems so much like a prison and a punishment. Sometimes I felt
like screaming and pounding against the walls of that prison, but my tight
muscles and tendons constricted me like a strait-jacket.



It felt as though the people closest to me were the ones who were the most
in denial about my illness. Some seemed to be like the doctors:
disbelieving. For quite a while I was terribly angry at those people I had
always thought loved me. I thought of them as dishonest: they had led me on,
they had never really loved me at all.



I went through another very painful stage where I could not accept the fact
that other people didn't know how much I was suffering. At that time, if I
had been a painter, my paintings would have shown:



a.. A woman filling the washing machine. She has a knife stuck in her
lower back and another in the middle of her back. Next to her, her husband
sits at the table reading a newspaper.
b.. A woman walking her dog. She has barbed wire around her hips and is
bleeding. People pass by, noticing nothing.
c.. A woman trying to work at a computer with a broken arm and a
disjointed shoulder.
d.. A women with dozens of wasps stinging her shoulders, tries to smile
while drinking tea with a neighbor.


That is fibromyalgia. Invisible pain. Unmentionable pain.



For reasons of my own, I did not want to follow doctors' advice and take
antidepressants, tranquilizers and painkillers. I take painkillers only when
the pain is extreme because I don't want to become accustomed which would
mean I would get no relief from them at all. Hot showers and heating pads
help along with painkillers in case of acute pain. I still get headaches
with vomiting and sometimes have to call a doctor who makes house calls to
come stop the vomiting. Those are the times when I think fibromyalgia is a
type of poisoning. Other symptoms I have had seem to uphold that theory: I
had bright red hands for a few years and then the palms of my hands and the
soles of my feet covered with tiny blisters. I still have ringing in my
ears, which can be caused by toxins.



I stopped using aspartame (NutraSweet) and noticed that I had fewer
headaches. I also stopped drinking any alcohol as it caused palpitations and
headaches, especially red wine. I stopped smoking and noticed I had less
fatigue and needed to nap less although the fatigue is still present.



I don't go to see doctors often because, let's face it, they don't know what
causes fibromyalgia, why should they know how to treat it ? Doctors seem to
have hard time realizing that we need to find out what is wrong with us and
what will help us, and that we need them as partners, not as authorities.



I often try my luck with healers and bonesetters and once or twice massage
has helped. I had bad experiences with two acupuncturists. Both were
authoritarian, didn't know how to listen and were prejudiced about
fibromyalgia. Such a lack of respect is the last thing we need.



I took a psychospiritual approach to my illness. I think that all illness
has a hidden lesson on a spiritual level. Physical symptoms often reflect
the condition of the mind and spirit. With chronic pain it is often
repressed anger that needs to be addressed. Repressed anger is a source of
internal stress and behind anger, most often there is a wound. I hope that I
will not be misunderstood here: I am not saying that fibromyalgia is
imaginary or psychosomatic, but that the body and mind are inseparable as
pertains to any illness or state of health.



What has helped me the most is to learn to relax deeply, even when I am in
pain, to accept the pain and let it express itself. We have a deep need to
feel our pain and it will express itself no matter how much we try to
repress it. Also, one should never forget that being afraid of pain makes it
worse.



Another helpful, joyful, thing I have found is what I call my «
wawatherapy ». I sing in the chorus of a rock and roll band where my husband
plays the drums. It does me a world of good. It helps me to transcend pain
and it warms up my muscles as I move to the beat of the music. Before I got
ill, I loved to dance, but fibromyalgia robs us of our capacity to skip to
dance, to run and I had begun grieving that fact. But in my wawatherapy,
it's
almost as if I'm dancing. Also, it's amazing how the act of singing can
cause me to forget everything else.



So I can say that I have been feeling better for the past few years. This
means that I have managed to create something resembling a life for myself
and that pain is no longer as high on my list of concerns. Is it that I have
gotten used to this illness? Pain can still wake me in the night or cause
tears when I try to bend over. Walking the dog can exhaust me and I
sometimes sit on a bench staring into space. I go out with friends but only
if I am well rested. I have to choose what I will do in a day very
carefully, because if I choose one activity, it means giving up another for
which I will be too tired.



The eternal question "How are you?" is no longer an irritating occasion
where I must be untruthful and grit my teeth. Most of the time I say "Not
too bad" because I have learned to respect what my body tells me and, like
my body, I can no longer tell lies.



There was a time when I thought I could heal from this illness by listening
to what my body wanted to say. It is true that it is behaving as if I had
never really listened to it so it has increased the volume and is screaming
at me ! It protests at the slightest stress or sign of fatigue. It's as if I
have used up all my physical and emotional resources. When stress is
chronic, hormones such as cortisol and adrenalin are produced which attack
our health on several fronts.



Studies have shown that fibromyalgia strikes a majority of perfectionists.
People who push themselves too hard or who feel they must constantly please
others. Fibromyalgia forces them to learn to let go, to slow down, to listen
to their own bodies and hearts. I have accepted that I may never be cured
but I will be doing my best to have a life in spite of fibromyalgia. And
maybe I will end up learning what this illness truly demands of me.



We all need to find a meaning for our suffering. When I ask myself what
fibromyalgia has taught me I can answer that it has taught me to live in the
present because that is all I really have left. It has also taught me not to
count on anyone but myself.



I don't work any more and that helps enormously. Some people with FMS prefer
to work and some are forced to work. I don't believe I could. I worked for
years in spite of loss of balance, headaches and painful tensions. I wanted
at all costs to be like everyone else, but it turns out I shouldn't have.
The ever-increasing demands of productivity and speed in the working world
were too much for me and I believe were a major factor in what led to my
burnout and physical illness.



So. I have finished my story. If you have read me up to here I thank you and
admire you. Perhaps you know someone with fibromyalgia, or perhaps you
suffer from it yourself. If that is the case, I'm sorry you have this
illness. You don't deserve it.



Katie



.