Fibromyalgia Resource

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(Editor's note: Eunice Beck is a registered nurse and 'PWC.' Health permitting, Eunice's columns will be featured on ImmuneSupport.com several times monthly. If you'd have any questions you'd like Eunice to address, please email her at copingcorner@prohealthinc.com)

First, I'd like to introduce myself. My name is Eunice. I am also a registered nurse of 30plus years. I am also a PWC (person with CFIDS) approximately 10 years from diagnosis. How long I had it before that is anyone's guess. I certainly can't remember! Not surprisingly, I was recently diagnosed with fibromyalgia, too. So, my CFIDS/FM friends, I know what you're going through.

I want to share my journey with you, and as time goes by, I’d like us to become better acquainted, and I’d like the time we spend together to help us all heal. I believe that our experiences with CFIDS and FM is part of a difficult journey, but one that can make us stronger--whether we want to be or not!

In this first letter to you I thought I’d start at, well, the beginning! How did my illness start? I'm really not sure. I don't remember a single precipitating event. Just the propensity to catch every "bug" that visited the community at any given time, and some that no one else seemed to get. I had bronchitis and laryngitis EVERY winter, usually more than once. My co-workers got used to my coughing or having no voice. I had frequent stomach flus. I even developed a viral infection of my thyroid gland, which turned out to be chronic, and still requires treatment. I just never felt good.

And as time went on, I had lots of muscle aches. I started running slight temperatures during the day, and having terrible headaches. I took more than my share of the world's Tylenol supply, but it provided little help.

And my sleep. I was so frequently interrupted by night sweats, I would have to change not only my nightgown, but the sheets as well. And no matter how long I slept, I woke up tired. I also had periods of weakness that I thought were going to cause me to faint. Any of this sound familiar?

I was fortunate enough to have a personal doctor who believed my many vague complaints of fatigue, achiness, poor sleep and continually feeling "wiped out.”And, he had witnessed my frequent bouts with the "bug of the week.” He had written prescriptions for antibiotics and cough medicine, most of which helped very little or not at all. He had ordered lab tests, x-rays, and even specialized tests for my thyroid, all of which came back "normal.”

The poor man knew I was sick, but had no documentation other than my “normal” reports and had no idea WHAT was wrong. So, finally he threw up his hands and referred me to a rheumatologist, a doctor who specializes in autoimmune diseases such as arthritis, lupus, etc.

I went to see the specialist with much trepidation. I knew there was something wrong, but was afraid I would hear "it's all in your head" and get sent off to a psychiatrist to fix what I knew was some kind of physical problem. The rheumatologist did more tests, with more "normal" results. He did a complete physical examination. But when it came time to discuss his findings, I heard a diagnosis that seemed worse than what I had feared.

There was a new "disease" out there, called Chronic Fatigue Syndrome by the medical community, and "Yuppie Flu" by the press, which implied that most of the problem was the fast pace of lives and the subsequent stress. In other words, it was "all in their heads.” In fact, the syndrome was stigmatized by the negative press, and I didn't want to have it.

Although the rheumatologist believed that CFS was truly a physical disease, he had no idea what caused it or how to treat it. So I was right back where I started--now with two supportive doctors (I was lucky), but no form of treatment.

As any of us do, when we hear something we don't want to hear, I went through a period of denial. A period of tears, and saying "it can't be true.” I've always worked--I have to work. And I wanted my life.

Once I was able to get past the tears and anger and denial, I began what would be a continuing quest to find treatment for this disease. I read what I could find, mostly in newspapers and magazines. I talked with my personal doctor. I tried to find information in the medical literature, but little was available, and this was before the days of the internet.

Finally, I found a doctor who was helpful. And ten years later, my life with CFIDS (I was so glad when they started including the immune dysfunction part of the name), and now with a fibromyalgia diagnosis as well, my life goes on.

I still take prescription medications and supplements. I fortunately have a supportive husband who does many of the domestic chores. I work. I have learned over the years to manage my life. To keep the CFIDS under control, and still be able to participate in the parts of my life that are truly of value to me.

I know I’m not cured. Only in remission at the level to allow my activities. And if I do not care for myself appropriately, CFIDS rears its ugly head again. Very recently, I had a week of temperatures and the headaches that go with them.

I have found a way to live with CFIDS. I hope over time to be able to share with you some of the methods that have worked for me and for others. There are many challenges each of us face in our daily lives, but there is usually a way around them if we look.

So, if you have questions or something you want to discuss, please e-mail me. I'll try to deal with some of your special needs or issues in my future letters.

Yours in health,

Eunice copingcorner@prohealthinc.com