A Mother's Perspective on Having a Daughter
with Chronic Fatigue Syndrome and Fibromyalgia

If you would like to have medical, supportive, or general information on CFS visit www.cfids.org, it's a great site.
If you would like to know what the symptoms of Chronic Fatigue Syndrome and Fibromyalgia are, click here to visit
&our page with that information. If you would like to learn what its like to have a child with CFS, read on.

My daughter, Kristy, was diagnosed with Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME) or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and some symptoms of Fibromyalgia (FMS) in 2003. She had been suffering with it even longer, we just didn't have a name for it then.

It started with a reoccurring, unrelenting cough; it kept her out of school for weeks at a time. Each time she had to take several courses of antibiotics to fight it - her pediatrician was running out of different types of antibiotic drugs to use.
And then, there were those nasty migraines; these kept her participation in sports down to a minimum. She used to play soccer and volleyball - things got really bad the summer of her freshman year at high school, she was trying-out for the volleyball team, after practices she was so fatigued, her head pounding so much, she came home and slept and slept.
This was also the summer we went to Orlando, Florida, to Disney World.   Kristy was fatigued most of the time and the migraines weren't too far behind.   She was a real trooper trying to keep up with the family, but never the less we curtailed activities to give her some extra sleep time.   We returned the day before school started, this was going to be her freshman year - with all those wonderful and scary expectations, to be with old friends and make new ones. Well, it lasted all of three days, the cough make back again and this time with a real vengeance.

Dozens of trips to her pediatrician, dozen more trips to "specialists", dozens of drugs (I still have a bag full of the ones that didn't work), several trips to the emergency room, several stays in the hospital (Kristy developed pneumonia from the coughing), and at one point we even had a nurse come to the house once a week to check Kristy's "PICC-line" (she needed to have a permanent intravenous line so I could give her antibiotics every 8 hours), dozens and dozens of tests for everything the doctors could think of, she was even radio-active for a few days!   The results of the tests were always normal or negative. She even went through two narcolepsy studies and still, she was a "normal" child.   Let me tell you, nothing was normal in our home and still isn't.

You're wondering the results.   Chronic Fatigue Syndrome (I used to call it the "left-over disease", since she was tested for everything else, this was the one illness left).   Dr. Chia, a specialist on CFS, recommended she be tested for "Echovirus AB Type 7", in his opinion, if the titers for this were high, then this would a strong indication of CFS.   They were extremely high (and continue to be); at least we had an "answer"?   We did not what CFS was, never heard of it.   On line we went, and discovered Kristy's symptoms fitted the guidelines offered: sore throat, muscle pain, intense headaches, long hours of sleep that still left her tiered, short-term memory loss, severe inability to concentrate, chronic cough, dizziness, nausea, tingling sensations and so on. These symptoms had to be reoccurring for at least six months to qualify for CFS, she well into 12 months.

What triggered the episode in September of 2003 that was so severe?   We may never know.   Where did she pickup this virus, again we may never know, no else in the family has shown any symptoms, nor none of her friends have become ill.
In addition, just to complicate things, the doctors discovered she has a large hiatial hernia, which gives her a really bad case of GERD.

The Downside:  It took the doctors five months to come-up the CFS diagnosis.   In the beginning, they said it was
"all in her head"!   How dare they!   Just because they couldn’t find the cause of the symptoms, it was her “fault?”   My daughter was a happy, normal teenager, who excelled in school, had plenty of friends (or so we thought), played sports, was involved in all sorts of extra-curricular activities, and was looking forward to high school.   She had no reason to “pretend” to be ill and stay home.   Kristy is in the Gifted Program for talented kids, she's an exceptional writer and very articulate in her speech, she can tell you exactly how and what she feels.   There was no reason for her to "fake" an illness; we didn't go back to those doctors.   I strongly believe, above all, you have to know your child, and you have to believe your child.

We haven't moved since Kristy started school, she has socialized with the same set of kids since kindergarten.
We thought some of them, were going to be life-long friends, we were sadly mistaken.   I thought in the beginning, they stayed away because they thought she was contagious, you would think they could of at least called... Kristy was heartbroken, she felt no one cared, and she felt very lonely and isolated.   A few “friends” came to visit, but those were few and far between. Yes, she has had a few "meltdowns", crying jags, days of depression or crankiness, can you blame her?
This isn't the typical life of a teenager.   We knew what she had wasn’t terminal, but we couldn’t explain what was going on with her either.   We were all scared, confused and frustrated.

Frustration - it has become the "Word" for us; frustration with doctors, frustration because there is no cure, frustration with not knowing how to help her, frustration with not knowing what the future holds.   You are basically at the mercy of symptoms you can’t control, can't cure, and can't predict.   Yes, life has become frustratingly challenging.

CFS has changed our family; it has been stressful dealing with the many aspects of the illness and its effects on Kristy.
It takes a great deal of patience and compassion to deal with the unpredictability of this disease.   Kristy's dad had a difficult time understanding her symptoms; her irregular sleep patterns, her sleeping for 12+ hours and still felling fatigued, her inability to “control” what was happening, her lack of desire to leave the house, her nodding off at the dinner table.
He's finally gained some understanding and more patience, but it has taken a long time.   It's also a balancing act to have one child with an abundance of energy, typical of a 12 year-old boy, and another child who can barely get out of bed
on some days.   I had plans of going back to work fulltime, now I work fulltime taking care of Kristy, the rest of the family, household stuff and our website business.   You have to learn to go with the flow…

The Upside:  We are fortunate to have a pediatrician who didn't give-up, though frustrated at times, Dr. Elaine Gutierrez, did some research and found Dr. John K.S. Chia, a specialist in Torrance, doing research on CFS (his son also suffers from CFS), together they help us manage Kristy's on going illness.   A few specialists are still around, but we’re trying to avoid any further tests.

We have been very lucky in that my parents and sister have been very supportive and helpful.   Even if they don’t understand all that goes on, they are more than willing to lend a hand or ear to the latest trivial activities…they are no longer surprised to learn that Kristy is sleeping at 12 noon, or that she threw-up last nights dinner.   They just can’t understand why the doctors aren’t doing more to find a cure.

We are blessed to have a wonderful teacher that comes to home-school Kristy on her high school classes.   Mrs. Pat Tachibana has become accustomed to the idiosyncrasies of our home – last minute changes to the schedule, Kristy's difficulty concentrating on tough subjects like chemistry and algebra II (Kristy sometimes nods off sleeping), her short term memory loss after reading assignments, two cats who insist on being on the table when they are studying, and a too friendly dog that sleeps at their feet.   Pat always has a smile along with words of support.   Pat has become family.

During this time Kristy has become a self-taught computer wiz.   With so many, many hours in front of the computer, she taught herself HTML, a computer language (its part of what made our web site possible). Kristy's artistic talents have also flourished on the computer, she has her own "tablet" that allows her to do free-handing drawings on the screen.   Kristy has also found many friends on line, friends who are supportive and understanding of her illness.   While they are not physically close, emotionally they are caring and compassionate, filling a void Kristy desperately needed.   Luckily, these friends are all in different time zones, so no matter what time she’s up, there’s always someone to chat with.   I believe the two things that have helped Kristy “deal” with CFS are her up-beat attitude and sense of humor.   Basically, she is still the same funny, caring, loving little girl I had before the illness created havoc in our lives, especially hers.

Mother and daughter have "bonded" together, in ways I never thought possible.   We spend a lot of time together at home, so we decided to become entrepreneurs together.   Girlie Girls Jewelry Studio lets us both be creative in different ways.
Our goal is to set funds aside for her to attend college and travel together as a family to Europe in a few years, but we also decided to try and help other CFS kids.

In researching CFS, we found many web sites.   Some of the information is contradictory and confusing, some don't address the problems of teenagers with CFS.   We found one site with information that was useful to adults and teenagers: the CFIDS Association of America - their web site is www.cfids.org.   They offer reliable information on topics like Patient and Professional Resources, Patient Advocacy and information on CFS; they also have special topics on youths with CFS.
We became members and decided we wanted to do more to help.

Kristy and I have designed a number of bracelets exclusively for CFIDS, with a portion of our profits directly going to benefit the organization.   Help us; help them educate doctors, lawmakers and the general public on ways to help.   Even if you don't purchase one of our bracelets, visit their website and become a member.

Good Health,

     Barbara Romero