Thursday, May 12, 2011

Thoughts About Where We Are on Fibromylagia Awareness Day 2011

I recently Googled "Why do we have awareness days?" and got page after page of search results on all kinds of different awareness days.

One person said they had a calendar that featured at least one awareness event for each day of the year. Now that seems like quite a lot of causes to keep track of every year. Another person suggested that an awareness day should be: a day of action...that will focus on grass-roots activism organized by local activists. I'm not exactly sure what that means, but that sounds like a lot of action.

Truth is, besides writing this post, I'm not sure what I am supposed to be doing today on Fibromyalgia Awareness Day 2011.

With three FDA approved drugs and a whole series of drug company commercial talking about fibromyalgia, I have to question whether we need a day to make everyone aware that fibromylagia exists. Yeah, I know the point of those commercials was to sell drugs, but I think they also increased awareness and legitimized fibromyalgia. Which I guess lends credibility to the saying, "All publicity is good publicity."

Because of these drug discoveries, it seems inconceivable to me that someone in the medical profession would deny the existence of fibromylagia when there are three drugs they can prescribe to attempt to treat it.

While three drugs are a start, these drugs aren't a cure. More research and development is needed to uncover more treatments. I've read that only 30% of people living with fibromyalgia response positively to the medications used to treat it. Clearly there is more work to be done in this area.

Pinpointing what triggers fibromyalgia would help treatments advance too, not to mention lead to prevention strategies so that no one else needed to suffer daily chronic pain and fatigue.

Plus I know there is more education that needs to happen about what fibromyalgia truly is. There is emerging evidence that fibromyalgia is a brain disorder. That is why drugs like Lyrica, Cymbalta and Savella, which have an effect on the brain and nervous system, seem to help some people with fibromyalgia. Which makes me wonder if the treatment of fibromyalgia will eventually transition from rheumatologists to neurologists.

By the way, knowing that fibromyalgia is a brain disorder helps us understand why it is so difficult to treat. I've heard medical professionals say that neurological conditions present some of the biggest challenges in medicine today. Having spent time at the neurology clinic, both for myself and with my dad who had Alzheimer's disease, I have first-hand knowledge of this fact. The brain remains the last unconquered frontier in medicine. Not only is it still unclear all the things the brain does, there currently are no treatments for restoring brain function to normal once it has been altered or destroyed by illness or disease.

So I think that fibromyalgia awareness today is less about shouting "This illness is real!" and more about educating people that there is still a long way to go to successfully treat this syndrome. It is about continuing to put pressure on all the entities that fund and conduct research on fibromyalgia to keep pursuing with their efforts. I guess this also means that our cause must find a way to wrangle more resources to fund these efforts so that they produce greater results. This seems like quite a formidable task, given that there are at least 364 other worthy causes filling the calendar each and every year vying for the same limited pot of resources to make a difference for their causes too.

Which leads me to my final thought: Fibromyalgia Awareness Day is about hope. Hope that in some research lab somewhere there is a happy accident that results in the discovery of new knowledge and/or new treatments that foster better outcomes for people living with fibromyalgia today. Until that happens, I hope that someone uncovers something honest and real that can truly increase the quality of our lives while we are waiting for our medical miracle. Ultimately, I hope that people with fibromyalgia can one day regain their fullest potential, enjoy life completely and leave chronic illness behind.

I think today I am going to allow myself to daydream about that day in the future when Fibromyalgia Awareness Day is no longer on the calendar.

I'll be back tomorrow with my weekly Mission 2011 post.

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Headstrong said...

A hopeful and edifying FM awareness day to you - from another "head case." ;) You take good care today, and always!

Knytrose said...

Well said Selena. And you have educated me today! I wasn't aware that they are now thinking that this could be a brain disorder. So now I'll make sure I read up on this today. Hope you are having a good day!

Felicia Fibro said...

I agree that the pharmaceutical commercials helped raise awareness for fibromyalgia and helped legitimize it, although I would argue that they made it seem like those medicines would get you back to feeling like you didn't have fibromyalgia. This gives me a reason to continue raising awareness about the actual facts.

I completely agree that my focus of awareness day has changed however. Years ago I would focus on basic facts and explaining what fibromyalgia feels like. At that point many people hadn't heard of the word fibromyalgia. Now-a-days I focus more on the fact that the etiology of fibromyalgia and how it effects the body is still not fully understood by doctors, thus our treatments are not-so-great. Like you said, I also focus on hope for and camaraderie with the fibromyalgia community.

Sharon Stevens said...

I wholeheartedly agree with you. I am currently on Lyrica which works okay for me but some of the side effects are not desireable. Such as how it makes me eat more and crave sugar. Seems it shuts off the feeling that I'm full and I eat 2xs the amount of food on my plate if I allow myself to.

I know a trigger to my flareups is stress...and I have alot of stress in my life. How do we rid ourselves of this in this day and age?

I'm not sure I'll see a cure for this disorder/disease? in my lifetime, but I hope so.

Look how far they've come with meds for RA. Maybe they'll come up with meds like that for fibro.
Who knows?