Putting a name to all of the pain and exhaustion

When I was first diagnosed with Fibromyalgia in the spring of 2007, I knew very little about it.  I only knew that the doctors had told me that the menagerie of  symptoms I had were pointing to FM.  The road to this diagnosis happened quite by accident.  I had went to my primary care physician because I had some sinus problems that were not going away.  After the exam, she sat down and looked at me and said that I looked like someone who had gotten no sleep in months or someone who was a very sick person.  I hadn’t bothered before to tell her about the pain, exhaustion, and inability to ever feel rested because all the other doctors before had chalked it up to the stress of motherhood, being a wife, and trying to work.  At that time, it was true that I had a very stressful life. I had two boys, a new husband, and an ex-husband that was determined to make our lives a living hell.  I was trying so hard to overcome the damage of 10 years of abuse as well.  I actually kept telling myself I was crazy and that nothing was wrong with me. In retrospect, I can see that the stress was in part, responsible for the severity of symptoms. When my doctor told me about how bad I looked, I just started to cry out of sheer relief. We then went over all my symptoms and history.  I went through a battery of tests for rheumatoid arthritis and lupus, just to name a few.  She then referred me to a very good rheumatologist group in the area, telling me that she strongly suspected Fibromyalgia.  The rheumatologist agreed, after more tests were taken to rule out other possibilities since my first test for lupus came out slightly positive. I had extreme pain all over my body; in fact out of 18 tender points, all 18 were very painful to the touch.  I had nerve pain all over as well and was unable to ever feel like I was rested even after sleeping 8-10 hrs.  It felt like my store of energy was minus infinity.  I was unable to walk from my living room to the kitchen most of the time.  I have always been an outdoorsy girl who had always loved dogs and horses, going on hikes, trying my hand at gardening, playing in creeks, etc… However, all of those things had been replaced with a struggle to get out of bed, trudge up the stairs to the main floor, and collapse for the day on the couch. If I had a shower by 3:00 P.M., it had been a good day.  Despite all of this, I walked out of the rheumatologist’s office feeling so relieved that the severe pain, debilitating fatigue, and mental fogginess that had been gripping me for so long, finally had a name.  I started to research and find information on this condition, naively believing that now my symptoms finally had a name and I would somehow be cured and beat it.  That was unfortunately, not the case.  I come from a long line of very strong women who believe that nothing should ever get you down, nothing can ever stop you from doing your work, and subconsciously, I think, believed that medicine is for wimps.

Since then, I have been on a rocky, twisting, and complicated see-saw of  changes, symptoms, and emotions.  There have been some drastic changes in me and my life while learning to live with this monster that tries to steal your days, your most precious moments, and your life.  Some of these changes have been positive and some not so positive, as my family would probably report if I would dare to let them have the keyboard. I have finally stopped being a coward, afraid to put myself out there, and write about my experiences with this condition.  My intent is to let other FM patients into the deepest parts of my life with FM. I want to write with complete honesty and candor, all of the feelings, thoughts, and needs inside that we are afraid to speak aloud.  No one who is suffering should ever have to be silent and suffer alone. I don’t want a pity party, I simply want to shine the light on the deep and sometimes dark fears, thoughts, and emotions that having Fibromyalgia has brought into my existence, my world. I know that I am not alone.   Tags: fibromyalgia, symptoms, pain, diagnosis, support, changes

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