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.    ❤🍀"

The Most Common Misconception About Fibromyalgia



I was doing some research to try and put together a fact vs myth type post about fibromyalgia.  I'm still going to do that within the next day or so, but I ran across an interview tonight that has a few paragraphs worth posting.  The interview was with Connie Ludtke, R.N. who's the nursing supervisor of the Fibromyalgia and Chronic Fatigue Clinic at the Mayo Clinic, Rochester, MN.  The interview is posted on the Mayo Clinic's website and you can find the entire interview HERE.

When asked, "What is the most common misconception about fibromyalgia?" this was her reply:

"The top misconception is that people think fibromyalgia isn't a real medical problem or that it is "all in your head." It's sometimes thought of as a "garbage-can diagnosis" — if doctors can't find anything else wrong with you, they say you have fibromyalgia. Being diagnosed with fibromyalgia does require that you meet specific criteria, including painful tender points above and below the waist on both sides of the body.
There's a lot that's unknown about fibromyalgia, but researchers have learned more about it in just the past few years. In people who have fibromyalgia, the brain and spinal cord process pain signals differently; they react more strongly to touch and pressure, with a heightened sensitivity to pain. It is a real physiological and neurochemical problem."

When asked, "Can misconceptions about fibromyalgia be harmful?" this was her reply:

"If people with fibromyalgia believe there is no help for them, they're going to stay stuck. Even if there isn't a cure, there are treatments that can really improve their quality of life. When people learn they have fibromyalgia, they can go through the stages of grief and loss — including experiencing anger and attempts at bargaining. When they get to the peace of acceptance, that's when they can realize there are limits to what medical technology can do. There's no magic surgery or pill that can fix this. They need to recognize that it's OK to ask for help with things and that it's OK to give themselves time for exercise and relaxation each day. They need to make their own health a priority. "

I find both of those paragraphs very informative.  Especially the last one.  When I read that people with fibromyalgia can go through the stages of grief and loss, it really hit me.  Sure, we've all heard of the "grief cycle", but for me I related that to someone who's told they have cancer or that they're terminal.  After reading this, and really thinking about it, I see that's exactly where I'm stuck right now.  In the grief cycle.  I'm not yet to peace and acceptance stage.  Looking at the grief chart above, I'm stuck going back and forth between depression, guilt, and obsession I think.  Where do you fall in the cycle?