I want to say up front:
I am 100% behind all the research that is being done.
I am 100% behind all the existing organizations, support groups, etc.
I am 100% behind all the bloggers, websites, coaches, books, aps, etc. that are out there, as long as they are not peddling snake oil!
I am 100% behind all of the Fibromyalgia Awareness initiatives, events, etc.
I am NOT being critical or finding fault with any of them. All they are doing is essential! Still, I have this nagging question…
What Do We Do While We Wait for the Science to Figure Out Fibromyalgia?
When I moved over 18 months ago, I was hopeful that I could decrease the number of physicians I had. After all, everything I was reading, being told by specialists I personally knew, and hearing at conferences was that Fibromyalgia management was shifting from specialists to primary care physicians. I sought out a highly respected local primary care physician, set up my initial appointment, and found him to be just as amazing as I had been told, but…
You guessed it: He did not feel he could manage my fibromyalgia medications. In fact, he told me that he would be questioned immediately if he wrote the scripts for the meds I was on.
I was floored! My treatment plan is extremely conservative as well as firmly rooted in traditional medicine. I consistently average taking only half of the pain medication I am prescribed. Other than the one pain medication, I am on anti-depressant and anti-anxiety medications, one of them a very old med, which have proven to be the most effective treatment for me over a period of several years. My medications, however, are not “the big three” that have been approved for FMS because those medications did not work for me. In fact, the three approved medications do not work for many people who have FMS.
My initial response was sort of like, “No problem! I have been at this a long time so I will teach you what you need to know about Fibromyalgia! I have taught two insurance-based health coaches, countless other people who have FMS, as well as their families and friends, and even physicians I know listen to what I have to say on the topic. I write about it, stay on top of the current news about it, and I LIVE it, so I am the perfect first fibro patient for you!”
While he had no doubts that I knew enough about it to do exactly what I was saying, he was still adamant that in this state, he would get called out immediately if he tried to manage my medications. Wow. I am still floored every time I think about that fact. My primary care physician cannot—would not be allowed—to manage my very conservative fibromyalgia treatment plan. On top of that, the nearest FMS doctor is an hour away, in a much larger town, and very difficult to get an appointment with.
I have a son still living back home, as well as many other family, therefore I travel back home frequently and have continued to see the same doctors for my fibromyalgia. My local, primary physician has been wonderfully understanding and willing to work with them should the need arise. While this has worked for me, it is inconvenient, and might well not be doable for other people in the same situation.
Seriously folks, I ask you: What is wrong with this picture?
Why, especially since FMS has finally been acknowledged as real, is it so difficult to find doctors who can and/or will treat it? People with FMS are overwhelmed enough without having to also search for, and often travel long distances for, physicians to treat FMS.
Just yesterday, Necie Edwards, one of my trusted fibroVOICES©, posted a link to an article by Daniela Semedo, PhD, in Fibromyalgia News Today entitled:
Fibromyalgia Treatment Often Depends on Physician’s Specialty
This is all too true! In fact, in spite of having been acknowledged as a legitimate condition, the job of setting consistent treatment standards has not been taken up by any organization.
Also, recently, the Senior Director of the American College of Rheumatology wrote this response to another of my most trusted fibroVOICES©, Celeste Cooper:
… the ACR did provide preliminary endorsement of the Wolfe et al criteria in 2010. This endorsement was published and cannot be “undone,” so readers can and will continue to see that endorsement online and in print. However, since that endorsement was made, the ACR has decided to no longer endorse diagnostic criteria for any disease…"
This is the reason he gave:
“For every criteria the ACR endorses, science continues to progress after the endorsed publication, and different things are published over time. This means readers can always find more recent information than something published 6 years ago – and that is the case here. An evaluation of the newer publications and whether they are better than the older ones should be done by readers and experts in the field, but at this time, the ACR does not plan to do it, given the ACR’s decision to no longer review diagnostic criteria for ACR endorsement.”
For the complete article, click here: http://fmcfstriggerpoints.blogspot.com/2016/04/acr-responds-to-inquiry-on-fibromyalgia.html#.V2qxc4-cHIU
Traditionally, rheumatologist have been the lead in diagnosing and treating FMS. Now, they are no longer supporting guidelines for its diagnosis. Even better, the reason why is basically because the science is always changing.
I am floored again. Yes, we are learning more and more about FMS all the time, and that is a good thing! We are also learning more about cancer, heart disease, diabetes, arthritis… The science behind medicine is always changing! That has not stopped us from having standards followed across the board by all healthcare providers for each of these conditions! The symptoms monitored, the wording used when discussing them with each other and their patients, etc. is consistent! When the science changes enough, they all change along with it, but in the meantime, standards do exist!
There are many excellent books already written that could be adopted and/or adapted to set these standards. One in particular is by Celeste Cooper, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain. Yes, the science has changed since it was written, but not so much that the basics it covers—what I call fibroBASICS©--have changed. In fact, in many ways the science has supported, backed-up, and validated what Celeste said in her book.
Now back to my original question:
What do we do while we wait for the science to figure out exactly what Fibromyalgia is?
Perhaps the better question is: Why are we waiting for science to figure out exactly what Fibromyalgia is?
The fact is, many of us are not.
We have become active, passionate voices, talking about our own experiences with FMS. We are keeping up with and sharing the news about FMS, and relating it back to our own experiences with FMS. We are educating one another. We are supporting one another. We have become coaches, authors, bloggers, speakers—patient experts--fibroVOICES©.
At my website and in my blog, I share information about and links to the fibroVOICES© I trust in my own fibroLIFE©. If you would like to be featured, have your blog listed, or have someone in mind that you think should be featured and listed, please send me your info and I will check it out. FMS varies from person to person, therefore I fully acknowledge that treatment modalities must vary as well. I am happy to include anyone except Snake Oil Peddlers.
In the meantime, while the science continues to advance, change, etc. the various existing FMS groups will continue to work within their own niches. I encourage us to continue to support one another.
On a personal level, it is my goal for us to get this point across and achieve these goals:
The information exists and has been proven over a period of years now--We know a great deal about how to manage FMS, how to find the best individualized treatment plan, how to support and help those with FMS.