Sharing Correct Information About Fibromyalgia

Sharing Correct Information About Fibromyalgia

I just saw this going around facebook:

"Fibromyalgia (= a muscle disease)

I am asking everyone to post for 1 hour as your status. I'm pretty sure I know which of my friends want to do this.
If you know someone who has fibromyalgia.. my hope is that in 2017 a cure will be found. Do you want this message posts for (at least) 1 hours? For those who have fought or are fighting with fibromyalgia. 🙏🎗Copy and paste do not share! Xoxo"

While I'm happy that the word about Fibromyalgia is trying to be spread to create awareness, it makes me sad when misinformation is being shared.  Fibromyalgia is not a muscle disease. In fact, it isn't a "disease" of ANY sort.  It's a actually a "syndrome", and it's neuroimmune rather than autoimmune although many people feed into the misconception that it's an autoimmune disease. Click the previous link to read more about neuroimmune syndromes.  

Misconceptions as the one above, are what we need to dispell as a community of sufferers.  Misinformation is why the awareness of fibromyalgia is so important.  We need to share, share, share to make others aware of what we go through, but we need to be diligent in making sure that what we share is the correct information.    ❤🍀"

It's All In Our Heads

It's All In Our Heads

So what makes my blog a little different from others out there, is that I always keep it real.  I don't hold back and tell it like it is.  That's why I'm telling you all, Fibromyalgia is all in our heads.  Ok, ok, I know that at least a few people reading this immediately jumped to conclusions and probably started getting pissed when they just read that lol.  I don't mean it in the way that one jumping to conclusions would think.  I'm not saying it's made up or fake, I live with it on the daily.  I know how real it is.  Our pain though, is signals that reach different parts of the brain, then the brain tells us that we hurt in a certain area.

There was a new study published in Scientific Reports on January 10, 2018 that addresses the brain activity in patients with Fibromyalgia.  The study looks at explosive synchronization (ES) as the reason.  Whatis ES?  Well, you've got me.  I completely understand all of the scientific talk in this study don't really understand it at all.  Even googling ES and wanting to rip my hair out while gouging out my eyes reading for about an hour, I still don't really understand it.  The conclusion is that "we suggest that this could serve as a novel theoretical framework and quantitative approach to modulating chronic pain through the conversion of an ES brain network to a non-ES network using brain stimulation methods."   

This was a small, phase II study conducted at the University of Michigan. Although the study had it's limitations, it gives HOPE that maybe some day a cure will be found.  I'm just thankful that no matter how limited,some research was done.  We need so, so much more research.  If you've been a follower of my blog/facebook page for very long, you know that the lack of money and research into this uncurable monster we live with absolutely infuriates me!  

You can read this study in full, by clicking HERE

At the beginning of every year I always say "Maybe this will be the year that our cure is found."  Well folks, maybe 2018 will be the year that our cure is found.  We can only HOPEand pray.  Yes, HOPE is still my favorite word.  WithoutHOPE, we don't have anything.  

Love & Gentle Butterfly Hugs To You All

The Joy Of Cooking

The Joy Of Cooking

Before fibromyalgia and all of my spinal and arthritis conditions, I loved to cook!  I never loved the clean-up afterwards, but cooking brought me such joy.  So much joy, that I even used to own a little "eatery".  I call it an "eatery" because it was inside of a mall, not a real restaurant.

As all of my conditions have worsened over the years, it's become so hard for me to really cook.  The pain is excruciating.  Some days, it brings me to tears to stand long enough to even fry an egg.  Therefore, I don't do a lot of real cooking anymore.  This truly makes me sad.  As I'm sure most of you know, fibro steals so much of our happiness.  Even the small things that people take for granted, such as cooking, are taken away.

I am SO proud, because I cooked a meal tonight.  A good meal.  I zested lemons, and chopped potatoes, and prepared 2 whole chickens.  I made lemon-pepper chicken, chunked potatoes, baby carrots, and fresh grean beans.  I had real, alive, eating, breathing people over for supper!  My daughter and her boyfriend, my son and his fiance, and a 12 year old boy who's parents are good friends of the family was hanging out with me today.  

In the middle of making this delicious meal, I was in so much pain I was fighting back tears.  Part way through the preperations I wildly wonderded what in the heck I'd been thinking, to undertake this task!  When the timer went off, I had to have my son take it out of the oven, and there's no way I could've ever carried the platter to the table so my daughter graciously did that task for me.

I hate to say it, but I was in so much pain that I wasn't even hungry.  Still, I forced myself to eat a little and indulge in the victory over fibro tonight.  I may still be sitting here hurting so badly that a handful of vicodin sounds like an amazing dessert  ....but I did it!  I beat fibro today!  I did something that I used to love to do, and I enjoyed it with my family!

**Disclaimer -the "vicodin" reference was thrown in to try to be funny, as I don't take any narcotics for my fibro at all.  I've refused them since diagnosis because I know that fibro is something I'm going to have to live with for the rest of my life and I don't want to become addicted to narcs.  I also realize that once I take one kind for so long, they'll stop working and there's only so many drugs out there.  I don't want to be in my 60's or 70's and in double the pain I'm in now, with nothing left to take because my body has built up a tolerance to all of the pain killers out there.  Some days (like tonight for instance haha) I wonder if the time has come to start taking something for pain, but alas I just pop a diclofenac 2x a day, grin, and bear it.  :)

A Dose Of Cuteness

A Dose Of Cuteness

Meet Max.  Max is my mom's new Shi-poo baby.  Max likes to dig holes.  In the mud.  All the time.  This little guy is a mess, but an oh-so adorable mess!  If you're having a bad day, hopefully his muddy little mug will make you smile.