Friday, October 29, 2010

Desperately Seeking Seclusion

Hi fellow fibros,

I assume that the majority of you have taken years to arrive at a diagnosis of fibromyalgia. My guess is that because fibro has little to no cachet in the medical world, it has been relegated to the garbage dump of diseases. Generally, a diagnosis is reached after extensive and often, expensive testing has taken place. If doc is still scratching her noggin in bewilderment, the process of elimination begins. Like so many other aspects in my life, I fell ass-backward into my diagnosis.

Since the age of 11, I knew I was 'different'. I was keenly aware that some things bothered me more than it did other people - things like bright lights, smells and noise. Growing up, my family repeatedly told me I was 'too sensitive.' I knew I didn't like it and hearing it even less but one thing I knew for certain: it sounded bad. In later years, I discovered there were others like me. In the book, 'The Highly Sensitive Person', {written by Elaine Aron, Ph.D}, Dr. Aron describes a collection of personality traits shared among 20% of the general population. Not to be confused with being easily wounded, a rudimentary definition suggests highly sensitive people, or HSP's, are acutely aware of subleties in their surroundings. An HSP is easily and unpleasantly over-aroused when placed in a highly stimulating environment for too long.

Fast forward 35 years. Fatigue, insomnia, irritable bowel and depression have become my daily norm. Backing up a bit, my thyroid gland begins its descent into madness at the age of 19. Soon after, I developed several allergies. During my mid-twenties, I suffered through infertility and crippling endometriosis. After each of my 2 pregnancies, the T-gland launched into protest mode and required months of medical treatment to regain equilibrium. Or, as I like to say, maintain homeostasis. At the age of 41, I underwent a complete hysterectomy, at my request. While getting spayed cured my chronic pelvic pain, I went on to develop IBS one year after my surgery. I put most of my medical misery down to rotten luck and an auto-immune system with a baaaad attitude.

I was no stranger to feeling tired and depressed so when fibromyalgia began to creep up, I initially didn't notice its presence. My first experience with chronic pain began in my right elbow after extensive summer gardening. My doctor, not surprisingly, diagnosed it as tennis-elbow. I went from Advil to acupuncture and after 7 weeks of needling, the pain went away... for good. All's well that ends well or so I thought. I don't know for certain but I suspect this was the onset of fibromyalgia.

Soon after the elbow pain stopped I experienced what I referred to as episodes of 'low-grade' flu. I was achy and feverish once or twice a month. Thermometer readings were always annoyingly normal. I couldn't figure it out. Eventually, the flu-type aches increased and I felt 'flu-ish' once or twice a week. But I had no explanation for the hit-and-run pain. My husband, a doctor, didn't have any answers for me either. He did, however, mention a colleague that ran workshops on a condition called fibromyalgia. I had never heard of it before. I doubted that it applied to me, so I filed it under F for forget it and another year passed.

In January of 2007, a strange occurence happened to convince me that something was seriously wrong: I no longer wanted to shop. My usual modus operandi had been to frequent the mall several times a week while my daughter was in school. I was hard-core - no shopping and dropping for this lady. During the winter, I noticed I was noticeably tired. My naps became so long that I was barely getting out of bed at all during the day. Not even the lure of January sales or the thrill of a secret slot-fix at the casino could get my tired ass out of bed.

In April of that same year, I caught the Norwalk virus. It hit me hard and I was flat-out, dehydrated and semi-conscious in bed for 5 days. The gastro symptoms eventually subsided but I couldn't shake the lingering exhaustion. To this day, I believe the Norwalk virus kick-started the fibromyalgia into full force.

The following May, my husband announced during dinner that he had ran into his former colleague, the one who did workshops about fibromyalgia. There was that word again! He attended a lecture on this 'fibromyalgia' and came home wondering if maybe, this was the reason for my mysterious symptoms. When he came to the part about having sensitivities to smells, noise and bright lights, a light of my own went on.

I read and researched fibromyalgia feverishly. Or without a fever, in my case! As part of the criteria for a fibro diagnosis, one must possess 11/18 tender spots on the body. Tender spots? At first I thought it was a delusional sex reference!. I was convinced that I had this crazy little thing called fibro but after some finger pressure and serious knuckle-play from my husband, I failed the test. I didn't have enough tender spots to qualify.

The thing that was different about my fibro diagnosis was that I experienced many of the secondary symptoms first and the pain came later. I was granted a re-test and this time I passed. Yay me! I guess...

I knew I had fibromyalgia but I didn't have much pain post-diagnosis. As we know, all good things must come to an end, including my pain-free pain condition. It has more than made up for any missed time, in recent years.

Getting back to the book about HSP's. While no study has been conducted, I wondered if a high percentage of HSP's (or any at all) went on to develop fibromyalgia. Was there a connection? Does having a highly sensitive personality/nervous system pre-dispose one to fibromyalgia? After all, the causes of both conditions are thought to be the result of a hyper-vigilant nervous system - both allow too much stimuli (or pain, possibly)to be processed in the brain.

Who knows? Maybe a highly sensitive-fibro link will be found some day. I sure hope so. In the meantime, I have my credentials: as an HSP with FMS/IBS, I'm desperately seeking seclusion.

And a cure, for sure.

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