Thursday, March 15, 2012

What it means to have Fibromyalgia

I know I don't talk much about my secret illness.I really don't say much about it to my own husband. My kids know someday's I can't move very well. They know my hands hurt and sometimes my legs hurt really bad. What they don't know about it is how almost everyday is a struggle for me to even get out of bed. If you had to live with flu symptoms every single day without any relief but you still had to manage all of your personal affairs, work, take care of your family, go to the grocery store,try and stay upbeat and positive, and you know resting is not an option, then you would know what everyday feels like for me. Fibromyalgia comes about when your body has gone through a stressful situation. Doctors are not sure what happens internally but speculate that your body stays at that "fight or flight" for so long that all of your feel good signals and your adrenals just stop working. Those little fellas working within your brain that help block the pain signals in the nerves go on a eternal happy hour. They are still at a bar somewhere in my body drinking and having fun while my nerve endings are freaking out. Lovely. I'm pretty sure I have had Fibromyalgia for many years but not knowing what was causing my all over body aches and pains. I'm pretty sure I was thinking " Ah shit, it is true about turning 45 and everything starts going downhill". I am completely embarrassed about having fibromyalgia. So much so that I haven't told one friend of mine. They have no clue how much I struggle to get to work. I would never tell my principal how walking class to class is like running a marathon to my body and that my knees are threatening a walk out if I don't sit down. My muscles in my hands and arms start to spasm almost like I have lifted so many weights. I think I must look like I have Parkinson's when I try and help someone cause my hands are shaking. I am mortified! Now I am officially one of those shaky old ladies!
My doctor is doing the best he can to understand what is going on with my body. He is also a Micro Biologist. Whatever. I don't care if he were a pantyhose tester on the side, as long as he helps me. We have been trying different medications. Some worked and some made me feel like someone else was living in my body with me and I was watching what this other person was doing but I had no say so in any actions. Make sense? Seen a movie like that? I stopped taking it. I am one of those people that are hyper-sensitive to medications, so I have to be very careful with what I put in my mouth. I can run a marathon on NyQuil. No kidding. Right now I have started taking a drug primarily used for people with seizures. It blocks the pain receptors in the brain by bringing back those little guys from the bar, and putting them in areas of the brain that boost the signals again. What? Yeah, me to. Just work. This is day two of this drug called Lyrica. I was against taking anything again, but my two and half week flair changed my mind for me. I've never been a desperate woman, but I would a done a Parkinson's lap-dance for my doctor just for a medicine to relieve my pain. Sad but true. (Please understand I am in no way making front of people with Parkinson's).
The first day on it was a little fluffy. That's a good word. Bright and fluffy. I was dizzy the first few hours, but managed to clean my house, make lunch, do a load of laundry and pull weeds. Is it working? The big test will be the next day. That's when my body rebels against any exertion from the previous day. Funny my body, I would expect my hands to hurt from pulling weeds, but it will be like my foot or something not even related. I must say I slept really deep and hard. Good sign. I wasn't up tiling my floor at 3 am. Yes, I've done that. I woke up almost refreshed, my body aches from yesterday and my brain is full of cotton. I hate it when I have a fuzzy brain. This is called Fibro fog and I get it frequently. My kids see no difference because I call them different names all the time. I can look at a spoon and I don't know the name. I know your name but I can't call it. I can't remember how to get to a place. It's scary and I don't like it. On my fibro fog days I try to stay away from complicated tasks, and I certainly try not to meet any new people! I take magnesium and flax seed oil for this, and it works as well as it can. So I'll see if this drug will help, and if it does I'll shout at the top of my lungs! Hallelujah! But if it doesn't, then Ill keep exercising, eating right, and taking care of myself. Really?  No, I'll walk when I can, I'll lay off the sugar but can't promise anything, and I'll just say no more often. I'll continue to get me kids mixed up, and I'll listen to my body more telling me I'd better stop or I'll be paying for it tomorrow.
Yeah me.


5 comments:

  1. Dear Child, When you share this with your family and loved ones, we step in to help you battle this monster with all of our might and prayers. Divide the worry with love and support with us who love you so dearly.I feel left out and slighted by not being given the opportunity to help.

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  2. I'm glad you're finally telling everyone, even your family. Now we can help out. And your own family better be stepping up to help out more than ever. Mom and I will make sure they know they need to step up since you're such a good mom and do everything for them.
    I'm sorry you've gotten the short end of the stick with your body... I feel stupid complaining about my little hot flashes. They're nothing compared to what you're living.
    Keep us posted and keep the blog going. And girl, fix this black background! It's 'pooky!!!

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  3. Hello sweet cousin, I feel your pain, especially not wanting to tell people, in some ways because it seems to magnify the disease and give it power. You chose to reveal your illness and your pain. And you see the arms that are outstretched, wanting to hold you and love you. I, too, am super-sensitive to medications and have suffered from the exhausted adrenals, not to your extent, but I have felt a bit of your suffering. Your doctor is doing the best he can, but fibromyalgia is still a mysterious, horrible affliction. Yet, the way you wrote about it made me smile. I wish you better health every day. I love you, Ronda

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  4. Sweetie,

    I have it too and I cannot imagine how hard it is to care for children. I have a hard enough time dealing with my cat when I'm in a flare. I think the fibro fog may be the worst bit.
    You know I love you and I'm here whenever you want to talk.

    Lisa

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  5. Sweetie, I'm so sorry you are having to go through this pain and suffering.......it actually makes me cry. I was so sure we were gonna be the ones who stayed young forever! Sadly we are getting old too,Dammit! I just had a conversation with my Dr. last week about fibromyalgia drugs and the risks/benefits...still deciding what i'm gonna do.I am here for you if there is anything I can do to help you through this journey.....I LOVE YOU!!!!!!!

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