Closing the Healthcare Void for Fibromyalgia Patients

The void of healthcare for fibromyalgia patients has grown over the last couple of decades leaving patients without proper medical care and a less than satisfactory symptom management plan. It is within this aperture patients feel abandoned (rightly so) and their health deteriorates both physically and mentally.

Currently, reliable information regarding fibromyalgia is not readily available and, more distressing, is widely inconsistent. We are no closer to finding the cause of fibromyalgia today than we were decades ago, and the full scope of the condition, or how to adequately treat it for that matter, is nowhere close to where it needs to be. Some patients are lucky enough to find a provider able to administer marginal care in an effort to sustain their state of health and prevent it from worsening but largely, this is not the case.

Without sufficient answers as to what’s happening medically, we begin to doubt our suffering and we begin to lose hope of being well. Parents living with fibromyalgia struggle to care for themselves and their children. Families are torn apart and many patients suffer in silence and alone.

And, speaking of children, some fibromyalgia patients are adolescents and younger. They, too, get pushed aside and dismissed. Their parents are told they are suffering from growing pains or allergies and there’s no need to worry. Just as it is unacceptable for adult fibromyalgia patients to not be taken seriously for their pain, it, too, is for the younger ones. This dismissal and avoidance of the bigger issue are objectionable behavior and must not be tolerated.

When proper care is unattainable, it is not uncommon for someone living with fibromyalgia to be both the patient and provider. Their healthcare has been lacking for so long, they have no chance but to take their care into their own hands. Using trial and error, they work to find what helps to manage symptoms and what fails. Some succeed, but sadly, many do not.

(A closer look into this problem can be found in last month’s edition - August 2020.)

As I concluded in the last issue, there are ways to improve the care of fibro patients and to begin closing the fissure in the healthcare system. To continue where it left off...

According to the National Institutes of Health U.S. National Library of Medicine website for clinical trials (ClinicalTrials.gov), there are 343,550 research studies in all 50 states and in 216 countries. With less than 1,000 studies specifically for fibromyalgia, it can be sufficient to say that little fibromyalgia-specific research is currently being conducted compared to the overall total of research studies. Even the Center for Disease Control (CDC), a national public health organization in the United States, says certain symptoms are “weakly associated” with fibromyalgia and that “more research” is needed.

The question of why there’s a lack of research being conducted is presented. But before jumping into the shortage of current research, let’s look at what could happen if there was more of it.

The combined importance of laboratory research and clinical trials (studies in people) of fibromyalgia is substantial. An increased inquiry into these areas of science would start a cascade of improvements across the healthcare field for the fibromyalgia community. And not just for the patient, but for medical providers as well. And let’s not fail to realize the potential of being closer to a cure when knowing how fibromyalgia is developed. Before we get ahead of ourselves, let’s start at the beginning: a diagnosis.

Currently, it takes an average of five years or more for a provider to arrive at a fibromyalgia diagnosis. The reason it takes this length of time is the inability to measure the somatic symptoms and cognitive issues. The American College of Rheumatology (ACR) in the United States established the initial diagnostic criteria for fibromyalgia in 1990 (revised it in 2010), and they are well aware of the issues this causes in terms of diagnosing.

With more in-depth knowledge of fibromyalgia, there is the possibility of finding indicators as to how fibromyalgia develops. It’s very possible to find indicators in genome analysis or other pathological data. And while somatic symptoms and cognitive issues can’t be objectively measured, these indicators can be. As a result, a quicker, definitive diagnosis would be possible no longer taking years to diagnose.

The findings of research studies and clinical trials are also important to the medical community in terms of educating providers. Continued education for medical providers (physicians, therapists, chiropractors, etc) would be available and they would be better equipped in terms of developing a more effective treatment plan in a more efficient manner. Ongoing, continued care would be probable resulting in the improved physical and mental health of fibromyalgia patients.

Then there’s the problem with inconsistent information across the public health organizations about fibromyalgia. Conflicting information leads to confusion for both providers and patients when they are relied on to learn more about the syndrome. When the information is contradicting, how are we to discern what is correct and what is not?

And when the information is misleading, it leaves the medical community guessing and uncertain as to where to begin to either exclude or accept a diagnosis of fibromyalgia. More concerning, it’s not entirely clear as to which specialist is responsible for diagnosing, administering treatment, and continuing care. The gap begins to widen and the patient starts the slow descent into the healthcare void.

So back to the question of why. Why isn’t there further research into fibromyalgia when it could be vastly beneficial to the healthcare of patients? And in that regard, why does the funding for it continue to decrease?

Here’s a shocking fact about funding: According to the National Institutes of Health (NIH) website, the categorical spending for fibromyalgia increased from $11 million in fiscal year (FY) 2016 to $14 million in the following two fiscal years. It decreased to $13 million in FY 2019 and is slated to decrease to $12 million for FY 2021. Again, why? Even when reaching out to the NIH to ask about the cut in funding, answers could not be provided. We must ask, what prevents it from being taken more seriously?

In order to close the healthcare aperture to prevent the decline of fibromyalgia patients’ health, we must increase awareness, advocate year-round, and gain additional support for increasing the funding for fibromyalgia-specific research and education. Increased funding will increase research which, in turn, will give a quicker and more accurate diagnosis leading to better treatment and care of patients.

In terms of awareness and advocacy, our stories are important and they matter both individually and collectively to give personal insight to living with fibromyalgia. Fibromyalgia is more than some medical term patients live with; it’s our lives and affects the lives of our loved ones. If the fibromyalgia community is silent and doesn’t share how this syndrome impacts our daily lives in everyday tasks, we are admitting defeat and willing to accept the shortage of care we currently receive. This cannot be and is not admissible.

Those individuals in governmental power with the ability to help bring about change - our states’ and countries’ representatives - need to hear us loud and clear. They are in a capacity to help with budgeting for funding of fibromyalgia research and can be the voice that will be heard. But in order for that opportunity to come to fruition, they need to first be able to hear us.

Once we have the backing from those in power to make a difference, we will slowly begin to gain the support of others. It’s a slow process, but one we must be committed to overtime if we want to improve this very broken system of care.

Not all those individuals living with fibromyalgia and caring for someone living with it are able to physically leave home to advocate. But the fact remains - all of us can use our voices and share our stories with equal effect. We must use the abilities we do have to help progress the entire fibromyalgia community forward to where we need to be.

Some fibromyalgia patients have given up on the hope of being well and living a better quality of life, but some have not. And those of us that are still burning the small flame of hope will help to light the flame for others. We will spread that light and will be seen. Hope can and will be restored.

I’m Brandi, the writer of Being Fibro Mom (www.BeingFibroMom.com). I am also the Family & Fibromyalgia program director for the non-profit organization, International Support Fibromyalgia Network. Being Fibro Mom was created in 2013 with the hope of helping fibromyalgia sufferers become fibromyalgia thrivers and advocating for parents enduring the hardships of fibromyalgia. Be sure to join my closed Facebook parenting group, Fibro Parenting, for the support you need as a parent living with fibromyalgia.