Fibromyalgia and Me – it’s about more than just the pain!

While I appreciate the fact that TV commercials are bringing to light the existence of Fibromyalgia, it bothers me that the perception they present is that Fibromyalgia is only about the pain.  Of course it is the drug manufactures who are paying for the commercials, so they have a vested interest in promoting the pain reducing benefits of their drugs.

However, the very real and potentially disabling pain is only one of the many symptoms that Fibromyalgia sufferers face on a daily basis.  From my own experience, reading and conversations with medical professionals, it seems that Fibromyalgia affects individuals in various ways.  Some may get a few symptoms, some may get a lot. Symptoms can range from intense bouts, or to unrelenting daily ordeals.

The medical community’s understanding of Fibromyalgia seems to still be in its infancy or at least its childhood.  When I was diagnosed, I was very fortunate to have access to a medical provider who preferred using drugs only as a last resort. This was very fortunate for me because I have a tendency to have the side effects so often listed in drug disclaimers.

I will never forget the day when I finally became too frustrated with the pain and knew I had to find an answer.  I had just turned thirty-eight and could barely sit up straight.  I could no longer pinch my thumb and index finger together with any force, and for a hand quilter this was devastating.  Rather than give up I turned to my computer and did a search of my symptoms.  To my utter surprise Fibromyalgia immediately popped up on the screen.  What surprised me more was the list of secondary symptoms that accompanied pain.

Now I use the term “secondary” only because of the widespread notion that pain is the only symptom. However I do not consider these symptoms secondary in any way.  You see, I have suffered from Fibromyalgia since I was an early teen.  I can trace the symptoms back at least that far and can pin point two traumatic events that might have triggered the symptoms during those years. I was a functioning, productive person through my teens and twenties, never letting the pain stop me.  Truthfully, during those years, I didn’t realize I was different from anyone else, and for the most part I had learned to push the pain to the back of my brain where it wouldn’t interfere with my plans.

By thirty-eight other symptoms were becoming real problems for me.  The biggest was the “Fibro Fog”.  I began to really worry because my short term memory was terrible.  I would also have times where my vision and hearing wouldn’t seem right. Not to mention stomach issues, anxiety, headaches and dizziness. Everything just seemed to be falling apart and I felt really old. I was especially upset because commercials said, “Depression hurts!”  I knew I wasn’t depressed, my family knew I wasn’t depressed, but I did hurt and it wouldn’t go away.

I am not much of a “why me” person but more of “why doesn’t anyone understand me” type when I don’t feel well.  I kept asking the question, “How did I get this way?”  I knew that a spine injury at thirty had started my downward spiral.  I had been a runner before then, but even with great medical help and therapy, I just couldn’t get healthy.  Every time I would get back into my exercise routine I would feel like I had the flu.  Sometimes it would be so bad that I would take a pregnancy test because I felt like I had morning sickness.  So not feeling well, I would stop the exercise and sleep more.  Needless to say the symptoms would reduce for a while so I would try it all over again.  For eight years I did this.  I also put on weight, reduced my work load and became virtually stranded in my home. To all those who knew me other than my family, I seemed relatively fine, but the myth was shattered the year I turned thirty-eight because I knew my mom was dying and the knowledge was crippling me; my mom was only sixty-four.  When my recent visit to a hand specialist left both the doctor and me in tears, I knew that I had to find out if anyone else suffered like me.

I really have been blessed in so many ways during the years since I was diagnosed.  I have had great family support, good counsel from a companionate doctor, a bishop who would listen when I needed to burden someone besides my family and who would give me work to do so I wouldn’t feel so useless.

Regardless of the support I have received, one of the hardest things to overcome has been the confusion over what Fibromyalgia is.  There have been times I have wanted to carry the WebMD’s symptom sheet (http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms) around with me just so that I wouldn’t have to answer the questions.  Sadly I get the feeling that people think, “Just take a pill”.  When I encounter people with or who have family who suffer from Fibromyalgia, I am asked, “What do you medication do you take?”

Well I don’t take Fibromyalgia medication, but I support those who do. I sleep when the fatigue is unbearable and I work when I am awake.  I try to eat well, and binge on cheese rather than chocolate when the pain is bad.  I try to drink water when my body tells me I am not thirsty but I know I should be.  I try to drink milk regularly because it seems to cut down on my heartburn. I use an electric blanket or really hot baths when my skin hurts and my bones feel frozen to the core.  I often take naps after sunrise and avoid driving at sunset.  I take pain killers when my head feels like it will explode, but avoid them for other pains. I have learned to exercise slowly and find new ways to keep moving even when it hurts.  Most importantly I look for positive things to do when I feel good.  I make the most of those prime days; days when the weather is calm and the barometer is steady.  Oh yea, I have learned to laugh more and I encourage my family to laugh more as well.

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