May 12, 2014

Fibromyalgia Awareness Day - 2014

Photo: Please "Like & Share" to spread Fibromyalgia Awareness <3

Did you know? Scientists estimate that fibromyalgia affects 5 million Americans 18 or older. Between 80 and 90 percent of people diagnosed with fibromyalgia are women. However, men and children also can have the disorder. Most people are diagnosed during middle age.

Today is Fibromyalgia Awareness Day. I know that I have talked about it on here from time to time but today I decided to really lay it all out there. I decided that it's time I talked about what it's really like to live with this day after day after day.....

What IS Fibromyalgia????
This is the definition that pops up - 
  1. a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.

But it is SO MUCH MORE than that.

It affects every single part of your body. Muscles, nerves, and joints are just the beginning. 

The way I think, called fibro fog. I can spend forever just trying to remember a simple word. It makes me crazy. I used to have a really amazing vocabulary. Well, that has mostly gone out the window. The other day I was telling my friend Eileen about my new Steelers flip-flops. I couldn't remember the word sequins!!! SEQUINS!! I had to ask Joshua! That happens so often. 

It affects my period. OH. MY. GOSH!!!! My periods were always a little rough but now they are almost unbearable!! And they last over a week!!!!!! I know, I know, TMI.....

The migraines... I have them almost all the time. At the least I will have 2 or 3 a week. 

Right this second as I am typing this, my left knee is in excruciating pain and my back, near my kidneys, is hurting so much!! And that's just what is jumping out. If I stopped and became still for a moment, there would be more....

The way I sleep has changed. I am SO TIRED ALLLLLLLLLL THE TIME!!! All the time. Until I try to go to sleep. Then I can't get comfortable and I am up and down and tossing and turning all night long. And it's a bone deep weariness. It's like I almost can't deal with how tired I am.

My body seems to be so stiff, almost like I am holding it in preparation for an attack. When I realize that's what I am doing, I try to consciously relax it. 

My hands and feet swell and go numb all the time. I get sharp, shooting pains up and down my arms and legs. 

Sometimes my skin feels like it's been rubbed raw or set on fire. 

Depression. Doctors don't seem to know if you have depression BEFORE the fibro or if having the fibro gives it to you. Either way, it's there. Always. 

Fibro gets you physically, mentally, emotionally and socially. You just don't always feel that the effort involved in getting ready to go somewhere is worth it. 

There are 3 medications that are FDA approved for treating fibro. You should hear the testimonies... They are definitely less than stellar. I was on Cymbalta for about 8 months. It helped the pain fractionally but it made the tiredness so much worse. I felt like a zombie the entire time. I was also taking a muscle relaxer to help me sleep. It helped. I definitely slept better but it never actually relaxed my muscles! LOL It just made it to where I didn't wake up a thousand times a night. 

This is what it's like living with fibromyalgia. It's not the same for everyone. There are varying degrees of severity. 

Most people go years before they finally get a diagnosis. I believe I had it for at least 2 years before I decided I needed to get checked out. I was having scary chest pains. I was so scared that it was my heart.

I was lucky. The first doctor I went to knew what it was. After running a million tests and asking me a million questions, he started me on a treatment plan. It's not his fault that it didn't work. Because of horror stories I have been a little worried about trying to find a new doctor and I have been trying to treat the symptoms naturally. That's not working either.  

I say all this not for your pity but for awareness. It is an invisible disease. You can't look at me and know that I have it. We have to speak out. We have to let it be known what it's like. It's not made up. We aren't stupid or lazy. We are sick. And there's not much we can do about it. 


  1. I'm so glad you posted this. I know quite a few people with Fibro but no one has every really spelled out what they go through before.
    And I do not pity you. I'm proud of you. You're one of the strongest and happiest people I know. Now I understand just how much that means when you're someone with Fibro.

    1. Thank you so much!!!! SO MUCH!!!!
      That's what I wanted. I wanted to be able to explain to people just what it's like. There are still people out there that think it's a fake disease or just all in people's minds. It sooooo isn't. And it's hard to find somewhere other than closed groups that will really lay it all out on there.

  2. I have a good friend who was suffering from fibro secretly for quite some time before she told anyone. I think it was because of the way you describe it as being invisible. I shared this on facebook to show support.

    1. Thank you so much!!!!!
      HUGS to your friend.
      It's such a hard thing to deal with. Sometimes the people that are supposed to be the support system turn on the person suffering. "But they look fine. They must be faking it. Just lazy." There can be a stigma attached.


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