I want to write a series of posts dealing with the pink elephant that sits in the middle of our livingroom, in my family’s presence, almost at all times. Honestly, it scares me to do so for many reasons, some of which I’ll go into.

To begin with, this pink elephant has affected every area of my life now for going on ten years. It has been the cause of me being labeled crazy, a hypochondriac, a sissy, moody, lazy, or high-strung. Those who love me excuse it by saying “she’s just too sensitive to pain.” I have been told to “man-up,” ignore the “aches and pains” and point blank to “to get my head out of my ass.”

I have had this pink elephant blamed on my life style. “Well, if you didn’t smoke, Teri, you would feel a lot better!” “Teri, you did a few different drugs in the 80’s, I’m sure that has had an effect on you.” “Don’t drink coffee Teri, that will help.” “Don’t drink any alcohol Teri, you’ll feel better.” “Get off processed foods and sugar Teri.”

What hasn’t helped the situation is that for quite a few years after I was first diagnosed with the pink elephant, a percentage of the medical community didn’t recognize it as a legitimate medical condition.  A good deal were “old school” doctors who enjoyed labeling women “crazy” anyway. (Women making up 90% of those diagnosed with it) This just provided them with another avenue.

And there were legitimate concerns about the diagnosis.

My pink elephant is Fibromyalgia. There were no established guide lines for diagnosing Fibromyalgia. There is no specific test that labels this pink elephant scientifically. Since my diagnosis, The American College of Rheumatology had established guidelines for diagnosing Fibromyalgia, which I’ll go thru in this series of posts.

Quickly let me say that I am very defensive regarding Fibromyalgia. I’m looking down the barrel of 10 years of chronic pain and fatigue, regardless of whether I smoked, lived right, got plenty of sleep, took mega doses of vitamins, exercised, etc. There were moments when the constant pain has driven me insane. There was just no escaping it. By evening, after a full day of flu-like symptoms, I’m in tears and want to escape the pain any way I can! Sometimes these symptoms last months, or weeks or, when I’m lucky, a couple of days.

These symptoms, in some cosmic way, seem to be affected by the weather. My husband, on my good days, mind you, will joke that my body is better than any weather forcaster. It will be blue skies and nice out, and all of a sudden I’m aching all over. He’ll say, “Why are you hurting? Look at the weather.” Within hours it will cloud up, and storm. Or the barometric pressure drops or goes up drastically. It seems my pain is in tune with this, and will scream at me from all over my body.

My days?  They are plotted out always with the thought of, “will I have the energy, will the pain make me exhausted and consequently moody?” There are days I am completely self absorbed, either out of fear of an episode or because I’m in an episode. It has been the cause of a good deal of depression. And, it has at times had me trying to self medicate to escape the pain.  Either with alcohol or marijuana.  A big portion of my life IS this disease, and has been now for well over 10 years. Well, 10 years since diagnosis, that is.

My now ex-husband and I relocated to Arizona because I discovered on some trips to Palm Springs that when I was in the desert, I didn’t have any pain. The first year in Arizona was euphoric for me. I had no pain, I power walked, exercised, socialized, cooked. I felt on top of the world physically.

A little over a year here, and the symptoms came back.  Gradually, the episodes were just days, instead of the ongoing months that they lasted in Washington State. Unfortunately, I’m now at the point where it can hang on for months and months. To me, the symptoms seem to be worse during weather changes, although a few doctors I’ve had don’t seem to understand that or feel it ins’t related.  After 10 years, I trust my own instincts on this and what my body seems to tell me.

In the next three or four posts I will go over diagnosing Fibromyalfia, symptoms, possible treatment of the symptoms, and the effects of this disease. Fibromyalgia has been referred to as a silent disease because there are no outward symptoms such as rashes, fevers or inflamation.

I will discuss how it has affected my family and our life together, as well as my frustration at trying to “keep it quiet” so that I won’t be labeled crazy, or hypochondriac, or overly sensitive to pain, or the myriad of other labels that have been attached to the many patients diagnosed with Fibromyalgia.

Digressing a bit, the last time I had this disease “thrown in my face” was when a drunk visitor to my home (who I’ll leave nameless for her daughter’s sake) said that “Fibromyalgia isn’t real, it’s just an excuse for people not to work.” (For the record, I have worked thru this disease almost continuously, in a hospital pharmacy, where I ran my ass off! It would take days to recover from the 10 hour shifts, and I would take ibuprofen like candy to get thru these work days, and a good deal of the time, vicoden when the pain and exhaustion were severe.

This was the closest I have ever come to physically throwing someone out of my home in a rage!!!  I said I forgave her when she called the next morning, but her words remain there to taunt me everytime I am laying in bed in pain.

I have NO sense of humor about this condition. NONE. NADA. ZIP. Live with chronic pain for ten years, under the mental conditions of having it denied by a high percentage of your own family and critiqued as the high-strung-crazy-lady disease, and then tell me if you would have a sense of humor about it. Or if you would even admit to being diagnosed with it.

I am, as I type this, in the middle of an episode that has been going on for months. I have taken prednisone for it, two times this year, when I discovered that it took my pain away. Prednisone has some nasty side effects, and most of the time is only prescribed as a means of getting things like bulged disc pain and asthma under control. The problem with this medication is the re-bound pain seems to be worse once the effects of the prednisone wear off. Which is where I’m at currently.

Most likely this episode is what is triggering me to break all silence where this frustrating chronic illness is concerned. I’m done hiding it in the closet. It is what it is, and it affects every area of my life. It causes me fear to the point of not wanting to “commit” to anything or anyone in case my body fails me again. It affects my thoughts, and it has aided in destroying a lot of my short term memory. It makes thinking clearly damn near impossible while I am in an episode.

I go reclusive while in an episode. If I must socialize, sometimes I’ll take percocet AND prednisone. This combination gave me a wonderful vacation in Hawaii and helped me to to be there for Kevin during his surgery and recovery. Yes friends, if I’ve socialized with you, chances are I was either on something, or had a few drinks to take the edge off, or both.

At this point, yes I am sensitive to pain now. But which came first? The chicken or the egg? Having the skeletal and deep tissue pain triggers fear and tension in me, which I know makes it worse. Having this type of pain and the accompanying exhaustion for ten years has made me very sensitive to what my body goes thru.

To those commenters who would point out the controversy behind Fibromyalgia, understand this, I will point-blank tell you to “Fuck off!” I’ve heard it all, and whatever anyone wants to call it, I couldn’t give a flying fuck. It’s pain, that IS debilitating at times, and has affected every area of my life.  It has affected the quality of my life a good deal of the time, as well as some of the quality of the time I get to spend with my children.

So foo-fooing it way, in my space here at Stumbling/Grace, will have you unceremoniously thrown off my site. (see, this is where the defensiveness comes in) I’m smiling here, but dead-fucking-serious.

But, if you have unexplained flu-like symptoms, with your body aching all over constantnly, if you have 11 of the 18 tender points that are in pain when a firm pressure is applied, if you are exhausted all of the time, if you suffer from unexplained irritable bowel syndrome with bouts of diarhea and constipation alternating, if your doctor keeps telling you there is nothing wrong with you according to all of the tests, this next series of posts may be of some interest to you.

To start with, here is a diagram that shows the 18 tender point areas, that if you are having unexplained deep tissue pain that has lasted longer than three months, may be an avenue for you to discuss with your doctor.
Fibrom_Diagram_tender_points.bmp