Thursday, September 19, 2013

You've got a whole new friend!

Well, kinda depressing post, and its a long story.  I'll try and keep it short.

When I was 16, I started getting pains in my knees.  It was only occasional, so I never thought about it.  Over the years it became more frequent.  Then it started to spread.  Both my legs would ache morning and night.  Sometimes my arms and shoulders would as well.  I should have been concerned when it started happening during the day, but I still never thought of it as strange.  I had an excuse each time.  "I overdid it yesterday," or "I'm really out of shape, that's why I'm tired."  It had slowly crept up over years.  Every time I complained of soreness or fatigue, friends and family were quick to point out that everyone got sore and tired.  It was nothing new.

The turning point for me was a few years ago, just before we moved.  I found I was unmotivated, was tired a lot, got fatigued easily, and had a constant ache in my joints.  Now, I was never the over ambitious type.  I'm an introvert, I like to stay home, and that's how I explained most of my symptoms, but it still nagged at me.  I walked everyday, but never gained any endurance.  Whether it was 20 minutes or and hour, I always felt like I had run a marathon.  And the pain...  I couldn't explain the pain.

It wasn't until last year that I got the proof that something was wrong.  We had a family BBQ at my parents' in Harrison.  We hopped on the boat and my dad took us around the lake.  There was unexpected engine troubles so we were forced to stop at a private dock while the engine cooled.  While everyone swam and had a great time, I sat at the bar (How cool is that??  A dock with its own bar!).  I kept my head down, my legs shaking in pain.  I was too fatigued to walk it off, but in too much pain to stay still.  I was thankful when we headed back for dinner.

I sat at the table all night near tears.  I took Tylenol, but it didn't even take the edge off.  I asked hubby to take me home early, and he kindly did so.  I sat in the truck waiting for the last of the goodbyes to be done.  It took way too long, so I grabbed hubby's sleeve and begged him to take me home.  My sweet man did just that.

This is how I look most mornings.  Not a happy camper.
Once we got home I collapsed into bed and didn't get out again that weekend.

That was when it truly hit me.  This was not normal. 

Shortly after that I went to my family doctor.  He checked for arthritis, but couldn't find any.  He sent me for some blood tests but they all came back good.  It was then that he referred me to the Rhuematologist.  I was referred to 3 doctors, one turned down my case, and the other two took months to review my file.  It wasn't until January that I got a call back for an appointment.  The doctor was in New West, but I was finally getting answers!

The doctor was super nice and after an extensive exam, sent me for 9 vials of blood and several x-rays.  Of course all came back fine, except one.  To the best of my knowledge, I tested positive for a genetic marker that affects my red blood cells, and as a result my immune system.  There are five parts to this marker, but the test is not sensitive enough to know if any of these are active, it just means I have the marker.  If the right part of the marker is active, it can be triggered (by virus or environment) and cause a certain arthritis of the hips and lower back. Make sense? 

An x-ray is not sensitive enough to pick up the arthritis, but an MRI is.  The doctor ordered an MRI for me, which I had in July.  I went back to the doctor to discuss the results, and guess what?  Came back clean.  No sign of arthritis.  As a side note, he explained I can still get this arthritis.  Since the marker is on the coating of my red blood cells, its part of my immune system.  Its known that this genetic marker can be triggered during an immune response to a certain virus (think salmonella) or a bug bite.  Lovely, eh?  He recommended I don't eat at pick-nicks and stay away from bugs.  I laughed.

So, what the heck is wrong??

He broke the news to me; Fibromyalgia. 

Sigh.  So bittersweet.  It explains so much of my life since I was a teen!  But its also incurable at this time and can be manageable at best. 

I will take this time to count my blessings.  I'm fortunate that I can still function, even if it can be difficult at times.  I don't need to be on drugs to manage the pain, and I will do my best to keep it that way.  I am also thankful that I don't have something worse.

The rhuematologist gave a list of medications to my family doctor to try if I feel I need them.  He did tell me to come back if I experience a significant change or if I feel I am developing any arthritis. 

And that is the end of my tale.  I'm a different kind of friend now, I'm your fibro friend!


  1. Good post! It is that much more amazing when you accomplish the goals you always set for yourself. I know you will never let it stop you from what you really love..even if it may be tough sometimes. That's why your my Fibro friend. Lol. :)

    1. Thanks Ashley <3 I can always count on you to be awesome for me!

  2. I'm glad you got answers, cause not knowing is the worst. I'm also glad its not severe right now, and you can function. :D YAY FUNCTIONING!!!

    Your pinterest pins gave me the heads up, so I used google a few days ago, cause I'm weird like that. You can be my fibro friend! WOOOO! we shall quilt together. I bought a walking foot for my machine today. I shall learn all the secrets now! MUHAHAHAHA

    1. YAY FUNCTIONING! :D Ya, I went crazy with the pinterest, lol! We shall quilt together, you can teach me how to use that walking foot! I'm excited to get that far in my quilts! I will try and blog more, I get excited when I see you post and it reminds me to post. My goal from now on is to blog at least once a week, but we will see if that works lol!

  3. also, you should blog more, then I will too.