Thursday, April 2, 2009

Fibromyalgia - It is real.


Time to rant.
NOT a time to get pity, or worry. Just a time to rant.

What is Fibromyalgia? One definition says: "A debilitating chronic syndrome characterized by diffuse and or specific muscle, joint, or bone pain, fatigue, and a wide range of other symptoms"

This is a REAL condition!
Some Doctor's still refuse to acknowledge this condition. But IT IS REAL! Any Fibro sufferer will testify to this!

Think back to the last time that you were working out and over-worked your body. The next morning you felt SORE and STIFF all over, remember? Fibro patients feel like this ALL OF THE TIME! Each person has varying degrees of pain, but there is always pain.

Think back to the last time that you had the FLU. Remember how exhausted you were, even after sleeping all night and all day? Remember how weak your body was, and how shaky and unsteady you were? Fibro patients feel like this ALL OF THE TIME!

Think back to the last time that you forgot someone's name, or forgot where you left your keys. Fibro patients have what they call FIBRO FOG. It makes it hard to concentrate, to remember things, and they sometimes lack the motivation to do anything at all.

Okay, so maybe this is the worst case scenario. But, let me tell you, any combination of any of these symptoms makes it hard to get through the day.

Fibro results from a traumatic experience, or very high stress levels. Researches have found that Fibro patients don't sleep well. They don't enter, or stay in, the Level 4, Restorative sleep that everyone needs for their body to heal. They also have a much lower pain threashold. This adds up to muscles never getting healed correctly, and the mind never able to completely refresh itself.

I have suffered from Fibromyalgia for 3 years now. Ever since my youngest was born. It's not her fault! I believe my "high stress" trigger was having 3 kids in 4 yrs! But, that was God's will, and I don't regret any of it! (That story is for another blog post!)

I was finally diagnosed after 3 yrs and 4 doctors, about 6 months ago. The 1st Doctor tested for everything, and got nothing. "It can't be fibro...you don't have the required trigger points." The 2nd Doctor never said, but clearly thought, that I was depressed. Maybe postpartum. Hmmm... do I still have postpartum 3 years later? And if you are depressed, aren't you supposed to FEEL depressed? Yeah, I was loving life. My 3rd doctor said there was nothing further he could do, so left me on the terribly expensive meds. My 4th doctor a year later finally diagnosed fibro and put me on meds that ACTUALLY WORKED! (I went to so many doctors because of moves and changes in insurance, not because I was searching for the answer I wanted to hear)

My fibro has gotten worse over the years. I now have the "requried trigger points" of pain. The meds help control my pain and "fibro fog", but I still have many bad days. I have days when I look around at my filthy house, at my kids watching tv and playing on the computer, and think "Hmmm..there is nothing to do". So, I lay down and take a nap. I am ALWAYS tired.
I NEED a nap every day. Let me tell you how much that disturbs my schedule! My kids hear "mommy is sick" all the time, even though I try to work through it, and go on with life. My poor husband gets the brunt of my complaints, but is SO AMAZING and SO SUPPORTIVE!

There is a section of my life, BEFORE I got the fibro, that I CAN NOT REMEMBER. This wouldn't be so bad, if it wasn't the 1st year of my Michael's life. Good thing we have pictures! And don't even ask what we had for dinner 2 nights ago, or when I shipped an order. It will take a few minutes to track down the info in my mind.

There are some days that I just need to curl up and sleep. The pain is too much, my mind is foggy, and I feel nauseaus. If I'm not at church, this is probably why. I feel like I have the Flu. The other days, when I can't get out of my regular duties, I do the best I can. That's all anyone can do in this life. DO THE BEST YOU CAN! I have found pain meds that help. I find JOY in my CHILDREN. I've discovered that I need to write things down. I find happiness in every moment that I am able to live a normal life. I celebrate the days when I go to bed remembering the smiles and laughter that I had with my children that day. I LOVE LIFE! This is really a small burden to bare compared to others. For that, I am grateful.

Now, again, I'm not looking for pity or despair. I just want people to understand that this is a REAL condition, and if I don't act 100% alert, or move a little more slowly than usual, you know why!


8 comments:

Whimsical Creations said...

Hugs!

Paperprincess34 said...

Thank you for posting about this. I've wondered what it is for a while but I didnt know anyone with the condition.

I'm glad you are still able to find the happiness in life. Big hugs to you for keeping your spirits up!

Mama Keith said...

Thanks for posting about this. My MIL has just recently been diagnosed with Fibro. It has only taken a year to diagnose but she has went from a very independent, busy, business smart woman to not knowing what day it is, what time it is in the day, what happened 2 hrs ago, not being able to get up out of a chair without help, spends most of her time in bed, in pain all the time. She has went to the dark side of this disease. She keeps telling me and DH that she can't live like this any longer and she has no reason to live if she is in this kind of pain. The doc is trying to get her meds right but MIL wants a magic wand waved over her and to be fixed right now.

Anyway, sorry for the long comment.
Wishing you more good days. ;)

Pam said...

Great information about Fibro. It must of been so frustrating not knowing what was going on with your body. I'm visiting to let you know your YUMMY Double DIpped Pretzels arrived yesterday and they were sooooooo delicious! Thanks so much for sending them to me, what a great giveaway to win!
Stop by and visit my blog Hands On Learning Fun - I send a Friday Freebie every week and have a great giveaway starting Monday.
Enjoy your weekend! Pam

Kasey said...

This is a great post. I have a very good friend who was diagnosed. There have been times that she's gotten together with all of us girls and no one could understand what was wrong with her. After she explained things to me even though I physically couldn't relate to what she was going through I had a better understanding. I think more people need to be aware of this.

2kute said...

oh hun, you put in words what I got thru. I have had fibro for about 7 yrs now, but was diagnosed in 2005. I dont remember how many doctors I saw, but remember some of them saying "its all in your head."
Today is such a bad day,so I am glad I read that.
I really dont know how you do it with 3 little ones. My baby is 16, and yes, there is so much I cannot remember, but I have learned to not get frustrated with that.
And yes, I am not depressed.

Our Family of 6 said...

I know how you feel I don't have fibro. But it took the 6 doctors 6 years to find out what I have. I was diagnosed with Neurocardiogenic Syncope. I Started blacking out 3 months after my oldest was born. I know what it is like to have good and bad days. I black out 5 to 10 times a day. I learned about it a year ago thanks to a doctor that his wife has a form of it. I learned that everyday maybe a struggle but the best of all is having my 4 kids and loving husband their everystep of the way.

Ritabop said...

I just wanted to let you know what a relief it is to read a post like this. I'm currently bouncing between doctors because they don't believe me. I decided to leave my job because the achiness that just won't go away was taking its toll. Your flu description is spot-on. It's good to know I'm not alone in all this - that someone knows exactly how it feels.

- Rita:)