My Life in the Fibro Lane - For Fibromyalgia Network News

Fibromyalgia Network News, “My Life in the Fibro Lane,” Submit yours at groups@fmnetnews.com


My Life in the Fibro Lane

Though the scenario may be different, my story is typical. In the mid 80’s an ICU patient, through no fault of his own (unaware of his intentions), grabbed my hair and tossed me about like a rag doll, quite literally. That was the beginning, only escalated by other physical trauma. I have also had torn rotator cuffs of each shoulder and one complete reconstruction as a result of my work as an emergency nurse. Anatomically, some of the muscles that support the shoulders also support the neck (cervical spine) and these injuries exacerbate my coexisting spinal problems and migraine headaches. These are the stage props of my not so loving affair with fibromyalgia.

I have been diagnosed with three disorders; fibromyalgia, chronic fatigue syndrome and chronic myofascial pain (CMP) from myofascial trigger points. As more recent research suggests and as I have suspected from years of research and writing all FM patients have myofasical trigger points (TrPs). In many cases a tragedy has occurred, they have gone undetected. It is unfortunate that clinicians do not recognize the presence of TrPs, since they can be a great aggravator of our fibromyalgia pain, and they can be objectively measured and treated. Another story for another day, and yes, I am an advocate for change.

Since this is my story on FM, I will make the gory details of chronic fatigue syndrome (CFS) short. Some think the two are interchangeable, but after researching, I do not believe that FM and CFS are the same. I personally have suspicions that my chronic fatigue is related to the Hashimoto’s Thyroiditis that went undetected for a long period of time, though I do not heal well and have many of the other symptoms of CFS. A test, I hope with the discovery and connection of XMRV to CFS, will finally lay this question to rest for myself and many others in my position.

I haven't worked since 2000. I didn't know what was wrong with me when I finally handed in the towel, I only knew that my brain was slipping away, the pain was unbearable and interfering with my ability to critically think. Sleep deprivation and non-restorative sleep was reaching a point of constant worry and anxiety that I might inadvertently harm a patient. This cognitive deficit was eventually confirmed by neuropsychological testing and evaluation by a forensic psychologist. So here I was, at what should have been the height of my career, alone and afraid to do the work I sacrificed and trained to do, care for others. Confused as to what was happening, after all, my training was as a hospital nurse and educator (I had zilch experience with any rheumatic condition), and persistence, I was finally diagnosed (over a year after I quit work). And found I fit the mold to a T. Five years earlier I had cut my hours back to part time in an effort to cope with the pain and fatigue. Five years, the average time from symptoms to diagnosis, though I suspect many of us would admit the symptoms quite possibly went unnoticed for a lifetime. I was now forced to care for myself. A feeble attempt at best, by both my healthcare providers and myself, I was totally ignorant. A new mission presented itself.

Through it all, and psychotherapy with a psychologist that specializes in treating patients with chronic pain, I learned that I had something to contribute and have been able to maintain forward momentum since. I have written a book on my three disorders as a way of personal coping and reaching out to help others (I had always told my students, if you really want to learn something, teach it, little did I know at the time how much more that would mean to me).

That is what I wish for everyone on this path with me, find an outlet, find YOUR contribution, we all have it in us. It was never easy, it still isn’t, but understanding and appreciating that there is more to being alive and well than physical being, that we all have something unique to share, is inspirational to me. The trials and triumphs of others are what keep me up on my down days.

I have followed my own advice on finding constructive ways of coping, and have fallen in love with writing poetry. Following is a poem that pretty much sums up the past two decades of my life. So I leave you with this:

MY CAP OF MANY USES

A woman struggling to style her thin hair,
Why should I grieve what was once there?

Fingers of condition apologize for that,
So, I strive to coordinate my life with a cap.

Success bloomed many caps in my time
Lately, they are scented by a different kind.

Words dot my life, push, strive and hope,
Corrupted by illness, change, endure, cope.

But fear not my friend though my cap is askew,
This woman is learning, bring meaning anew.

These fingers have taught me about myself,
My caps are as peacemaker, caretaker, health.

So I leave you with this, my caps they were sent,
A schoolhouse of words, pure, sturdy and meant.

As I fondle this wisp of thin hair that remains,
My caps, though different, they stay the same.

Written by Celeste Cooper, author
Integrative Therapies for Fibromyalgia, Chronic Fatigue syndrome, and Myofascial Pain: The Mind-Body Connection (co-author Jeff Miller, PhD) Healing Arts Press, Imprint of Inner Traditions, Bear and Company