Edition 6 - November 2000

Anyone who suffers from Chronic Fatigue Syndrome and/or Fibromyalgia, has occasionally had to confront the erroneous beliefs of misinformed doctors, loved ones, or strangers who claim that CFS/FM must be "All In Your Head." But some widely publicized, controversial research reveals a new theory that suggests the source of some symptoms may, indeed, be all in the back of your head.

A condition known as Chiari Malformation - a rare defect in which the cerebellar "tonsils" (shaped like the tonsils in the neck) are longer than normal and protrude down into the spinal canal - is being investigated as a possible cause of symptoms in some CFS/FM patients. The malformation of this part of the brain puts pressure on the brain stem and spinal cord. In addition, a more common condition known as cervical stenosis occurs when the spinal canal appears normal, but is actually too narrow. Both conditions result in poor circulation of the cerebrospinal fluid from the brain to the spinal cord.

While these conditions can be present at birth, many are not recognized until later in life, when the compression of the brain stem or upper portion of the spinal cord may grow more severe. Often symptoms can be triggered by some kind of head or neck trauma, such as a car accident or a medical/dental procedure that involves prolonged hyper-extension of the neck. Most people get better on their own from such an injury, but others don't and may need surgery.

Dr. Michael Rosner discovered the possible connection between CFS/FM and spinal cord compression at the University of Alabama (UAB) while diagnosing and treating a local physician disabled by CFS. A pioneer of the surgery, Dr. Rosner began treating patients who didn't meet classic definitions. Since that time, additional studies have been done to evaluate a possible connection between these neurological abnormalities and the symptoms of CFS/FM.

The condition is typically diagnosed with a magnetic resonance imaging (MRI) scan of the head and neck. Type I Chiari malformation was first identified in 1891 and was considered to be rare before the availability of MRI scans. Even with MRI technology, the diagnosis is frequently missed because of the way the neck is usually scanned. According to Dr. Rosner, a neurosurgeon who has operated on a large number of CFS/FM patients, "Unless you're looking for this or you have a high degree of suspicion, you say there is nothing wrong with the patient.

The treatment for these disorders is surgery, in which portions of bone from the skull and/or the spine are snipped away to expand the space available for the brain stem and spinal cord. While this surgery is not new, the application of it to CFS/FM patients is in the early stages of investigation, and it is unclear how many patients in this group have symptoms that are caused by Chiari and whether their CFS/FM symptoms can be relieved by the decompression surgery. Some of the symptoms of Chiari malformations include:

Most of the research so far, on a possible connection, is being done with Fibromyalgia patients. The National Fibromyalgia Research association (NFRA) is funding a blinded study to determine whether abnormalities like Chiari and/or cervical stenosis are more prevalent in FM patients than in healthy controls. Rae Gleason, director of NFRA commented, "We're very hopeful that this will be the first real, viable treatment for many people."

Some patients suffering with CFS/FM are unable to find relief and have had understandably strong reactions to the news that their symptoms may have a specific cause and treatment. Many patients recall injuries in auto accidents a short time before their symptoms developed. And given the wide variety of CFS/FM symptoms and the apparent involvement of some many systems throughout the body (eg. central nervous system, immune system, etc.) for many patients this latest theory of a potential cause seems to "fit".

Some FM patients who have had the surgery report dramatic improvements very soon afterward. However, others have actually gotten worse. While some physicians are convinced that the surgery is a viable treatment for a subset of CFS/FM patients, others are appalled that such potentially dangerous operations are being offered to CFS/FM patients when the connection to Chiari or spinal cord compression is still unclear. According to the Wall St. Journal, the chairman of neurosurgery at UAB wrote a letter expressing concern about the number of surgeries being done by Dr. Rosner for CFS/FM patients whose exam results were normal. He wrote, "These patients are desperate people, eager to obtain any sort of relief that might be offered them. They, I feel, are easy prey to someone who offers them a quick fix for a problem that doesn't have a quick fix." Dr. Rosner has since left UAB and now does surgery in North Carolina. He and two other neurosurgeons - Dr. Daniel Heffez at the Neurosurgical Institute in Chicago and Dr. John D. Weingart at Johns Hopkins - are currently doing most of the surgeries on Fibromyalgia patients.

Is this a viable treatment fo the majority of CFS/FM patients? Experts strongly disagree, time and controlled research will be needed to determine whether surgery is warranted under these circumstances. But many CFS/FM sufferers are understandably impatient. With the recent explosion of publicity on a possible connection between Chiari malformation and CFS/FM (the Wall St. Journal and the Baltimore Sun each ran front-page articles on the controversial surgery), many patients have been rushing to their doctors armed with newspaper clippings and requesting MRI's to determine whether they might be surgical candidates. Many doctors are baffled as patients visit them looking for a diagnosis that they believe to be extremely rare. Experts agree that it's premature for patients to seek diagnosis and treatment from their local neurosurgeon because most doctors are unaware of a possible connection between spinal compression and CFS/FM as research is just beginning to be published.

According to the Wall St. Journal article, Dr. Dan Clauw, a well-known Rheumatologist at Georgetown University, believes only a very small percentage of CFS/FM cases are related to these neurological disorders. He and other critics are concerned that the surgery is being done "without a rigorous effort to compare surgery patients' outcome with others."

Dr. Charles Lapp, a well-known CFS specialist in North Carolina, finds the recent research interesting. However, he does not believe that Chiari and cervical stenosis cause CFS or FM; rather the symptoms of these neurological disorders may just mimic those of CFS/FM. He states, "Brain dysfunctions of myriad types can cause these abnormalities."

The results of the surgery have been very encouraging in a few patients. Some people have regained their lives after this operation and are committed to sharing their experiences with as many people as possible. However, results vary greatly among individuals and much more information is needed. At the very least, controlled clinical trials should be done before patients are subjected to complex and highly invasive surgery.

In a recent CFIDS Chronicle interview, Dr. Heffez said that it's too soon to know whether Chiari or cervical stenosis causes CFS or FM. He contends, "My gut feeling is that there is far too high an incidence of these conditions in these two groups for there not to be some sort of causal connection. But we need to wait to examine the data over a longer period of time."

Keep in mind that decompression surgery is for Chiari malformation and cervical spinal stenosis; it is not for CFS/FM by itself. Much more research will be needed to determine whether these spinal cord compression problems could be a causal factor in CFS/FM. The surgery is expensive - about $30.000 - and may be considered "experimental" by insurance companies and therefore, not be covered. It is also a highly invasive procedure that includes serious risks. According to Dr. Bennett, "You should only consider this surgery if a specially trained physician can demonstrate that you have abnormal neurological findings on physical examination and that these findings can be correlated with certain abnormalities on MRI of the base of the skull and/or neck."

A true friend is like a diamond so rare.
False friends are like autumn leaves they are found everywhere.

Give thanks for friends and flowers
for the sunny days and cooling showers
Give thanks and humbly pray
To serve God well, each bright new day.

One of the good things about getting older
Is that eventually we learn
what is important and brightens our lives
And what is of little concern

Some families go their separate ways.
And seldom give a thought
to treasured things like family ties
that really mean a lot.

But we don't see things quite that way.
We have with time found out
That a lovely, caring family
Is what life is all about!

I think I can, I think I can, I think I can! Remember the story of the Little Engine That Could? He used the art of positive thinking and won his battle. Venturing into a project and having the self confidence to complete it uses this art. Learning a new hobby, or taking up a new computer skill, or even learning to dance all require an attitude of positive thinking. Just what is this thing called positive thinking?

To put it rather simply, positive thinking is believing in yourself and your capabilities. It is the art of having reasonable confidence in your own energy, then, using this confidence to help you work out goals. It can bring the wonderful feeling of fulfillment when accomplishing one task at a time. It's a large series of small successes that can create the positive difference in daily living.

I was introduced to an entire new lifestyle when diagnosed with Fibromyalgia Syndrome. I could no longer do things as I had before, so I got very discouraged. Before I took sick, I could do whatever I wanted when I wanted. Now I had to face a new set of limitations, and was experiencing extreme changes in my lifestyle. Things now take me longer to do. I needed more rest, and I had to deal with pain everyday. These things soon made me realize I had to change my outlook as well as the way I went about my daily chores. This meant a new attitude! It meant learning a new way of thinking. You may ask yourself however, how do you think positive?

To begin, start your day with a confident attitude. Tell yourself it will be a good day. I do realize how difficult this may sometimes be, but try it and you will see how it can affect the outcome of your day. As you reach for that early morning coffee, focus on the many things you can do, ponder over them and give yourself a pat on the back. You're off to a good start. Next, take your daily schedule, whether it be at home or work, and begin your tasks one at a time believing in your own abilities to accomplish them. I find life to be a series of little victories, so no matter how long it may take you to complete something, think of how good you'll feel when it is done. Don't be afraid to tell yourself that you have done a good job.

When you expect the best from yourself you are bound to give it. Just be sure your expectations are reasonable and well within your reach.

This new way of thinking took me a lot of practice and a few good tries, but after awhile I was able to think positive. Research has proven how the mind and body together play a role in all of our well being, therefore, if you are able to think healthy, you will feel better. We all play a very active role in our well being, so we really do have a lot of power deep within ourselves. We can tap into it if we take the time to discover how. There are a lot of books available to help you discover the world of positive thinking and they make for very good reading.

I have only tapped into the surface of positive thinking but it does hold a world of new thoughts and accomplishments. If you want more information, I'm sure the library of your choice would be of great help to you. Positive thinking is really a power which holds many benefits to us all. It has really been a great help to me in adjusting to my new way of living and I 'm sure it could be of great benefit to anyone who uses it. In today's fast moving world of change we all need all the help we can get, so POSITIVELY THINK POSITIVE!

Now you have an explanation for your child's aches and pains, unexpected bad moods, poor sleeping habits and trouble learning in school. An understanding doctor has prescribed medication, exercises and perhaps psychotherapy, but what can you do?

If you are a parent who also has fibromyalgia, you might already have some ideas. However, if you are starting from scratch, the first thing you must do is develop a positive attitude. Remember, like a fit of the giggles, positive attitudes are catching.

A parent's life becomes a balancing act between acknowledging the more severe symptoms of fibromyalgia in the child while not being over-protective. As early as possible, get a young person to take responsibility for managing the condition.

Teach him or her to listen to what the body is saying, and not to push too hard to keep up with the others. Conversely, you both have to realize that sitting or lying down too long can aggravate the symptoms.

Try to find a heated swimming pool, and take your child there for gentle exercise. You might go to a class or pick up a book on the art of massage, and gently stroke those aching limbs on a bad day. Perhaps you could get a rocking chair: rocking the pain away is an old-fashioned idea that still works today. If soft music is playing in the background, so much the better. Walking and warm baths (whirlpools but not saunas) are also tried-and-true ways to relieve stiffness and pain.

Encouraging a young person to get into the habit of focusing on something other than the symptoms is the name of the game, especially when pain of digestive problems are severe. Save favorite magazines, movies, music and video games for the difficult times. These are not a reward for the pain, but a way of trying to push awareness of it to one side.

Show your child how to refocus the mind from stressful pain to relaxing imagery by talking about a favorite place, toy or TV show. The deep, slow breathing taught in the practice of yoga also has a soothing effect and can actually reduce pain.

These are ideas you can try out at home, but what can you do about school? First of all, educate your child's teachers. Remember, before the diagnosis, even you may have thought your child was lazy and school phobic. Fibromyalgia is an invisible condition, and hard to believe in if you don't have it yourself. So be patient.

Show the teachers some literature on the condition. Ask them if you child can stand up and stretch once in a while in class, and perhaps have longer time than the other students to write tests and exams.

Some students successfully explain their condition to their classmates and develop a buddy system for help carrying books or taking notes in missed classes. For those difficult days when your child needs extra help because of falling behind, it helps to know that others with fibromyalgia have fallen behind but have eventually gone on to complete university.

In fact, introduce you child to other young people who have fibromyalgia. There is a popular misconception that meeting another child with the condition will lead yours to dwell on the symptoms. This simply is not so. Experience has shown that, as with adults, a trouble shared is a trouble halved. Who can better understand, and perhaps advise, on the problems of an 8 or a 17 year-old with fibromyalgia than a person the same age with similar problems.

Above all remember that, as the old saying goes, laughter is the best medicine. Make sure you and your family take a spoonful every day.

The art of medicine consists of amusing the patient while nature cures the disease.
- Voitaire -

Hypochondria is the only disease hypochondriacs don't think they have.
- Fred Metcalf -

If you don't see what you want, you've come to the right place.
- Sign in optometrist's window -

We need a twelve-step group for compulsive talkers. They could call it On Anon Anon.
- Paula Poundstone -

Hi! My name is Byron. The other day I heard the doctor tell my mommy and daddy that I had something called Chronic Fatigue and Fibromyaliga. I don't know what these things are. All I know is that I am always tired, and I hurt a lot. I heard daddy telling the doctor that all of this started on October 31, 1992, when I was two years and nine months old.

I remember, a long time ago, I was sick a lot. My nose was runny, my belly hurt and I was really hot. We went to the doctors office a lot that winter.

Somewhere around the time that Santa came to our house, I started feeling really tired, all day. Maybe it was because I kept waking up at night, and I would be awake for a long time. This made me feel really tired in the daytime, and mommy made me lay down for a nap. I hardly ever fell asleep though, and if I did, I couldn't fall asleep at night. Just after Santa came, we started seeing another doctor. She gave me some medicine to make me sleep, but it didn't work. We went to the hospital for lots of tests. I had needles and pictures, and even wires glued to my head. A little while after, I started rubbing my hands and my feet because they hurt, and sometimes they felt funny.

When I had my birthday, I was three, my eyes started hurting, especially when I went outside. Not that I wanted to go anywhere then anyway, because I felt too tired. I cried most of the time, and I fell down a lot. I just couldn't seem to walk right. It was around that time, we went to Toronto to see a doctor at a big hospital just for kids. He gave me some medicine, but it didn't help either.

When it got warm outside, I started to feel a little better, but it didn't last. After this, I just kept getting worse. I had a hard time playing like the other kids, and I told mommy that I knew I was different.

Mommy told the doctor that my arms and legs jerk and twitch, even when I am sleeping. Sometimes they would shake, but I didn't want them to. Other times, I couldn't sit still, I don't know why, but I couldn't. My throat and neck started to hurt, and sometimes I would gag and choke on my food. By this time I had seen a lot of doctors, and I told mommy I would never get better. I had a hard time to walk up and down the stairs because my legs just wouldn't bend. I told mommy and daddy that my head, mouth, chest, arms and legs hurt, and sometimes they felt funny. Mommy got real upset one morning after I had been awake most of the night, because my head and chest hurt so much, and she packed our suitcase and took me to the hospital. I heard the doctor tell her that all kids have funny little things wrong with them. Well, I don't think mommy thought this stuff was so funny, because she asked him to leave the room with her. When she came back, she was crying and shaking.

After that we went to another hospital, and mommy told me we would be sleeping there for a while. She said they would help me. When we were there, they did all the same tests as before, and something called an EMG. We slept there a lot of times, and just before we went home the doctor told mommy and daddy they didn't know what was wrong with me. We would have to go to Toronto again! They gave me some more medicine to make me sleep, and it still didn't work.

It started to get colder outside again, and I was getting worse. I told mommy and daddy that I hated doctors because they gave me tests and needles, but they didn't make me feel better. I hated leaving the house. The noises bothered me, everything smelled funny, I was tired, I hurt everywhere and I just wanted to stay home. Most days I couldn't even talk right, and hardly anyone could understand me.

The doctors kept telling mommy and daddy to put me in daycare, because it might make me feel better. Mommy and daddy said no because I was too tired all the time. That was about the time mommy started spending a lot more time at the library, and reading more books. Then I heard her talking to people on the phone about this Chronic Fatigue and Fibromyalgia. I told mommy not to worry because I was going to make myself better. She gave me a big hug, and told me that she would find someone to help us. She said there were other big people and kids that felt just like me, and that we were not alone. Then we went to Ottawa and Toronto, and then back to Ottawa, to see more doctors and have more tests.

Santa came to our house again, and I still felt bad, just like the last time he came. Just after I turned four, we went to Toronto again, but to a different hospital than before. I had a test that mommy and daddy called a sleep study. They stuck a lot of wires to me, and the next day we saw another doctor. He seemed to know a lot about being tired and hurting. This is the doctor that told mommy and daddy I had Chronic Fatigue syndrome and Fibromyalgia. He said there were some other doctors that agreed with him.

I haven't gotten any better, but I hope some day I will. If you know of any other kids or big people that feel like me, you could help them a little, by giving them a big hug and telling them they are not alone.

Hi! I'm Byron's mom. As you know, Byron didn't write this article, I did. But everything that has happened is real. When I was asked to write it, I said yes, but I soon realized I was too angry to do it from my perspective. Thus, I decided to write it from his. Through all of this, he has tried to be strong and remain cooperative with a system that didn't have the knowledge to help him. If you know of a child or adult with these problems, please, tell them Byron's story.

I'm special. In all the world there is nobody like me.

Since the beginning of time, there has never been another person like me.

Nobody has my smile. Nobody has my eyes, my nose, my hair, my hands, my voice.
I'm special.
No one can be found who has my handwritting. Nobody anywhere has my tastes for food or music or art. No one sees things just as I do. In all the time there has been no one who laughs like, no one who cries like me. And what makes me laugh and cry will never provoke identical laughter and tears from anybody else, ever. No one reacts to any situation just as I would react.
I'm special.

I'm the only one in all of creation who has my set of abilities. Oh, there will always be somebody who is better at one of the things I'm good at, but no one in the universe can reach the quality of my combination of talents, ideas, abilities, and feeling.

Like a room full of musical instruments, some may excel alone, but no one can match the symphony sound when all are playing together. I'm a symphony.

Through all the eternity, no one will ever look, talk, walk, think or do like me.
I'm Special. I'm rare.
And, as in all rarity, there is great value.

Because of my great rare value, I need not attempt to imitate others. I'll accept - yes, celebrate - my differences.
I'm special.

And I'm beginning to realize that it's no accident that I'm special.

I'm beginning to see that God make me special for a very special purpose. He must have a job for me that no one else can do as well as I. Out of all the billions of applicants only one is qualified, only one has the right combination of what it takes. That one is me.
Because........I'm Special.

- Author Unknown -