My name is Mrs. Lisa J. Malverty;…I am thirty-six years old, married to Bruce and we have an 11 year old son Ray. In July of 1997 when I was thirty years old I went to the doctor because I had a migraine headache for six days straight. What followed were three years of testing and ruling out all other diseases or causes. What is unfortunate is that there are no tests for any of these syndromes. I went from a two-page medical file to a four-inch file on tests and doctors reports. I have seen a Neurologist, Rheumatologist, Allergist, Headache Specialist and others. No one knew what was wrong with me! Finally, in March of 2000, my husband found a book on Fibromyalgia and Chronic Fatigue Immune Dysfunction Syndrome. In the beginning of the book they say if you have four of the eight symptoms it is most likely you have one or both of these syndromes. I had eight of the eight symptoms! Finally, I had an answer to why I am always sick. Right to the doctor I went, with the book (From Fatigued to Fantastic, by Jacob Teitelbaum, MD). He read it, and in April of 2000 I had the diagnosis of why I am always sick. I have Fibromyalgia and Chronic Fatigue Immune Dysfunction Syndrome. Since July of 1997 my health has worsened considerably and now I suffer with Acid Reflux, Irritable Bowel Syndrome and Chronic sores (herpes simplex) on my nose, which result in swollen glands, fever and severe pain in my face. There are more symptoms but I am trying to keep this as short as I can. I had to leave a wonderful job as Membership Secretary at The New York Yacht Club in August of 1999 because the symptoms became so bad I could not make it to work everyday. I had dreams of retiring from there, as I was the fourth person in that position since the 1920's. Needless to say my career dreams have gone down the drain!

Lisa M.
Bronx NY

I am 45-year-old, college graduate, (magna cum laude/BS in Computer Science) who lost her computer programming job. Laid off. Every month, during the last year I worked, I'd was written up for to taking too many sick days off because of painful and unpredictable FMS attacks. So, I knew at that time if I wanted to try to keep my job I needed to something to control my chronic pain. I couldn't always afford trigger point injections (and too doctors were using steroids at the time) so codeine was given to me. The first time I took a perocet, 1991, it quickly got rid of the pain----but it put me slept for two day. Mad, about missing work, I told the doctor I never wanted that drug again. That is, not until three months later when I had another painful attack.

For the next year, I took codeine only when the pain became unbearable. Don't let doctor tell FMS is not a progressive disease. It is for me. The older I get, the more progressively worse the FMS has become. Pain up to a 10 that could top any record chart. And I won't dance to that.

In the past I have found understanding and compassionate doctors tell me I am worst FMS case they have ever seen. Those are not words I want to hear. Unfortunately, I have had FMS since I was 14 years old, that's 32 years, and I do need something for the pain. Without it, I could not grab hold of the quality of life that so many people NOT in pain take for granted. Without them, I do not have a life. Yes, I hate it, I hate pills period, but I know I need an adequate amount of pain medication. But now doctors are running scared of the new Virginia laws and the DEA (as well as their undercover setups.) Who is to say how much medication a person in pain needs. Apparently the DEA knows and it enforcing it using their own rules. Whereas, many honest legitimate doctors are getting charged and not prescribing schedule II drugs.

Marie D.
Va.

Out with the Old, In with the New.
By Sheri Anderson T. in Alabama

In my thirties, I began to have burning, stiffness and aching in my legs. My vision began to blur, migraines, anxiety and to have depression. My arms would have shooting pains from the hands to the shoulders, and I could not sleep. I had to continue to work fulltime.

I felt as others , that I must be weak in some way and not measure up to those who appeared to be strong in handling daily stress. My chest began to hurt and I was short of breath constantly, every hour of the day and night.

I began to be exhausted more and have vertigo at times, and became allergic to medications over the counter and prescription.

I had an appointment with one internist, who said that I was fine. Four years later, I requested a copy of that office visit. Would you believe that he had diagnosed Fibromyalgia, but the older medical term for it? Had it told me, I would have known my diagnosis, and it would have relieved me of four more years of waiting, and beating myself up for being sick, and thinking it was in my head.

I was diagnosed with fibromyalgia, at a new internist office. Little did I know, that I was in my first major flare-up, when I was an emergency work in new patient. My internist could not finish the exam, as everywhere he touched me, I yelled or moved my limbs. I also had a severe bacterial infection and my first knowledge of IBS, was to come in a few months. I was unable to eat, except bread and water, was nauseated and had become very emancipated. He did diagnose fibromyalgia, but would not tell me anything about it, or where to learn about it. I found out my diagnosis from reading his office visit report! I sat down on the floor at Barnes and Nobles and prayed for guidance to find two books to buy on the disease. I bought Running On Empty by Katrina Berne and Fibromyalgia and Chronic Myofascial Pain Syndrome by Dr. Devin Starlanyl and Mary Ellen Copeland. These were and are great books, written so the average person can comprehend the contents. I also like Dr. David Bell’s book , The Doctor’s Guide to Chronic Fatigue Syndrome.

A year later, I was so thin and could not eat well, that I asked my internist to do lab work, to look for cancer. He ordered a simple workup, white blood cell count, SED rate etc. I had to ask him to go over the report with me in his office. He did not want to tell me, that I had Chronic Fatigue Immune Dysfunction too. I asked him about the white blood cell count being 2.3 million, and he said that was not entirely unusual. Now we all know that the scale for white blood cell count starts at 4.6 and goes to 11 million. Next came the multiple chemical sensitivities. I have had to take one fourth of a starting dosage, of any medication. So , if the doctor orders 25 mg. once a day , I have to cut it into fourths and take one fourth of the 25 mg. a day. Sometimes, the reactions are nausea, chest pain that feels like a heart attack, swelling in the chest and esophagus. Perfumes, cleaning products, insecticides, cigarette smoke, clothe dyes and pollen make me very sick. I can not avoid all of them , but I try to stay away from them.

I have problems with anesthesia. I asked a board of 13 anesthesiologists, to look over my notes about having CFIDS and being chemically sensitive, before surgery. After surgery, I woke up very slowly and I had a bruised nose and bruised mouth. It was all hidden from me and not on the hospital recovery room notes, that I requested. For three months, I had severe panic attacks, depression and unbalanced walking. I know that it was from a reaction to some of the drugs, used to put me to sleep. I think that it is important to talk to the dept. before being put to sleep, and hopefully they will read your literature about precautions…. before surgery. This large hospital did not care, obviously about my health and I had asked them to please take good care of me. I put my trust in them and it was a nightmare during the surgery, as I must have had a major seizure from the drugs administered to me. I had never had a seizure before in my life, until that day in the operating room. The bruised nose and bruised swollen lip , were proof that something happened during the surgery.

My metamorphosis, began at the beginning of CFIDS, and also having Dysautonia, which is passed down from my mother’s side of the family, genetic.

Out with the Old and In with the New… I got through the shock stage quickly, but got stuck in the depression stage. The worse part was that the people you think are your acquaintances or friends, soon disappear for many of us with CFIDS and other illnesses.

I began to discover what was important in my life, which for me was God, the father and Jesus the son. Our deer and the squirrels, wild birds and hummingbirds and beautiful roses, iris, and dogwood trees, hydrangeas, and daylilies were what gave me a lift, each day. I would focus on the good things in life, that we could be thankful for each day.

I always loved the full moon, sitting in my swing on my veranda. If I cannot sit up to watch it rise in the sky, then I can lie down in the swing to enjoy the view.

Dusk, is when the trees are silhouetted against the darkening sky. At times you hear the tree frogs or you see the fireflies glowing, among the trees on our hillside forest of very tall and old trees. At times, the wind blows before dusk and I close my eyes. The long leaf pines blowing in the wind, remind me of the ocean sounds.

It is not just for the female gender to enjoy nature, I meet rough and tough men who just love a fragile, long stem rose blooming.

The times that I am sickest are very, very hard. It is a horrible disease. Those are the times that others pray for me. I appreciate all of my Internet friends, I feel closer to them than my relatives. I wish family could or would open up and talk as we do, not just about sickness, but be honest, uplift others and have compassion for others in life.

Out with the Old…. That other, Sheri is now gone, the one who was vivacious and light in step and had energy, who never sat down and who strived to be a perfectionist. The person who gave all her energy in doing for others in her job and at home, found herself alone, when she became ill.

In with the New.…is a more forgiving Sheri, who has learned not to beat herself up, for being slow, having brain fog, forgetting her thoughts, slurring her words at times in a crash, and having to lie down every morning and every afternoon I have learned to understand that others are not always lazy that can not get a lot done, that there are invisible diseases such as CFIDS. I face people constantly, who are critical. The majority of humans think that if a person is not in a wheelchair 24 hours a day, they are not disabled. At times, I look so well that I could not possibly be disabled, is what I hear from others. It seems people that work fulltime are actually jealous that I am home each day.

I think that I have moved forward. My hope is that my story will help others, to comfort you, encourage you that there is beauty and joy left in the world, that you can enjoy on your better hours. You really must live your life, hour by hour.

Try to get past the anger, it makes depression worsen and depletes any energy you have left in your body.

Thank you for letting me share my metamorphosis, with you.

How about writing your story for the web site and sharing with all of us. You never know, you may help someone else that feels alone, in this malady.

Sheri Anderson T. in Alabama

The Changeling

Locked deep
within
this screaming body
is the essence
of the being
that I
used to be.

You recognize
the flesh,
but know not
who I am,
for things
are not as
they once were.

Unseen by you,
pain stalks
my days
and
fills my nights
with endless tossing,
as I beg for sleep.

Spasms
twist and cramp
my muscles,
ligaments,
and tendons,
making
every movement
an agony spawned
in the depths
of hell.

and yet,
you see it not...

For this is
the
unseen
challenge
that has become
my life.

Robbed
of the daily joys
That I once knew,
I turn,
with outstretched hand,
grasping for
the understanding
that I long
to find.

My memories
drift
in the endless fog
that whirls
around
like
shadowy tendrils
that taunt
my weeping mind.

Trapped
in this nightmare
of exquisite pain,
a heavy blanket
of black despair
threatens
to smother
what is left
of me.

Who am I now?

Am I
this chequered quilt
of boundless symptoms
or
can you peel
away
the layers
to discover
the unique and shining soul
I have become?

No...
I am not the person
that you
once knew...

So shake
my hand
and get to
know me
yet again...

I am
the fibromorphasis
of who
I used to be.

Liana Brittain
copyright
March 26, 2002