I've mentioned before, and I'll say it again. I have Fibromyalgia. I wrote often in a blog of mine about Fibro and the ways to combat it and improve every day living. I do really well, but I won't lie, every day is a struggle to keep up my good pain days. I have pain every day. The trick is in managing pain. I have a chemical sensitivity that keeps me from taking pain medication, so I've had to take some drastic measures. I have to push through pain every day to workout. But working out keeps me feeling energized. It's how I'm able to write, clean, and basically get out of bed every morning, but it's a constant battle against not only pain, but lack of ambition, tiredness, and a constant urge to give up. My brain is telling me I hurt too much to do anything and I have to argue with it. LOL
Some of the crazier symptoms of Fibromyalgia (Like random pain for no reason isn't crazy enough):
-small or non-existent "moons" on the fingernails while thumbnails have dramatic crescents.
-delayed reactions to pain. The first time I knew something wasn't right was when I pulled my heavy carry-on baggage out of the overhead compartment, and my arm felt like it was going to fall off two days later.
-short term memory impairment. In the past, my family used to think I was joking when I'd go into the kitchen for something and stand their for five minutes, unable to remember what brought me in there. This happens to everyone sometimes. It happens to me about 20 times per day.
-skin sensitivity. When I shave my legs, it feels like I'm shaving off a layer of skin. Sometimes I can't wear anything to bed and I can't have the covers on parts of my body. If there is a crumb in my bed, I feel it like it's a rock. Fibro Mates and I call this the "Princess and the Pea" syndrome.
"No Way! Constant pain and weird symptoms? You must be making it up. You must be bored, or looking for attention...etc." People, for years, have made fun of the diagnosis of Fibro and though the stigma is lessening, it's still there. My current Neuro is sure that I have a birth defect that's as of yet been discovered. But I feel doctors who aren't ready to accept what's in front of them, are really missing the mark.
Allow me to introduce you to another sufferer. Virginia Kentner, wife of author David Kentner. She was kind enough to do a quick write-up of HER experience with Fibro.
"Fibromyalgia…I was diagnosed with this disease in 2002 after many tests to rule out other diseases. I originally went to the doctor because I was not able to pick up a cup of coffee without severe pain in my left arm. I went thru a lot of tests before it was correctly diagnosed. When I went to the rheumatologist, he knew within ten minutes of examining me, including touching my pressure points that it was indeed fibro. I am not sure when I first got it but I know that I suffered with a lot of pain throughout my middle age.
Being diagnosed was the easy part, now what to do about the disease. The doctor put me on Celebrex and that seemed to help for about 2 years. Then the pain kept getting worse and when I would go to the Doctor he just kept telling me there was nothing more that he could do for me, so depression set in for about a year.
Along with fibro I then started having back problems (herniated disc) and sciatica. I went to another doctor to get my disc taken care of which involved injections to fight pain, but with such intense pain he finally prescribed a fentynal pain patch, which not only helped my back, but also helped with my fribro. There are mornings that I have a very hard time getting going, and sometimes when I get up from sitting I have to make sure my legs are as ready to go as I am. If I miss my pain medications I cannot function, as the pain is so intense that all I can think about is the pain until I get some kind of relief. Other factors that will send me into a fibro attack is stress, activities and weather (I cannot handle any cold…weather, wind, air conditioning, ice packs) those factors make me want to stay on the couch all day and do nothing at all except sleep to escape the pain.
I believe that it is inherited since my Mother (never diagnosed with Fibro) had many of the same symptoms and several of my sisters and brothers show the same complications (I am the youngest of twelve), some have been diagnosed and others just never went to doctor to be technically diagnosed.
Another major side effect of fibro is called fibro fog, which affects my memory and concentration. I know at my age that it gets harder to remember names, dates, places, etc but the fibro fog makes it more intense.
Another major side effect is sense of feeling, sometimes it hurts to just have someone hug me or to let my pets sit on my lap, and holding a baby has to be limited since it feels like you have held them (your arms just ache) for an hour and it’s only been fifteen minutes.
Another side effect is the clothes that you can wear, nothing over the head cuz it hurts too much to put on, no blue jean material because it makes your legs ache twice as much, layers of warm, soft clothing (I wear insulated underwear seven months out of twelve), nothing too tight that will make you ache more.
Another side effect is that it has basically changed your whole life and taken over all aspects of what you used to be."
Thank you Virginia, for sharing your story with us today.
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All my best,