Fibromyalgia — an invisible disease with a devastating toll

Fibromyalgia — an invisible disease with a devastating toll
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The public revelation by Lady Gaga that she has been diagnosed with fibromyalgia has given renewed voice to the more than six million Americans who currently suffer from the illness. As an advocate who has worked on this issue for decades, I was happy to see this illness, and chronic pain in general, thrust into the national spotlight.  

However, as a patient who has been dealing with the long-term effects of this diagnosis for more than 20 years, I was heartbroken to learn she will now join me and millions of others who must grapple with fibromyalgia symptoms and face the new reality that this diagnosis brings to our lives.

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Fibromyalgia is a devastating illness that is characterized by a long list of symptoms, including chronic pain and debilitating fatigue. Patients are also afflicted by many other issues, including sleep disorders, intolerance to medicines, headaches and abdominal, bladder and bowel problems. Many patients also report experiencing what’s known as "fibro fog," which affects short-term memory and executive functioning.

 

The cause of fibromyalgia is still unknown and there is no cure for it. For those who are undergoing treatment for the symptoms of the disorder, current medication is largely ineffective. What’s more, treatments can be costly or even worsen symptoms. Many times, providers tell patients to “suck it up” and learn to live with the pain due to outdated training.

 n addition, a lack of understanding and medical consensus forces patients to navigate the health-care system on their own. Many are left unable to work or lead a full life due to the disorder destructive effects. Better treatments and a cure can be found, if we raise awareness of the illness and the challenges it presents daily to millions of American families and advocate for increased resources. 

In March of 2016, the U.S. Department of Health and Human Services (HHS)released the National Pain Strategy, which was created at the request of the Senate to address the burden of chronic pain in America. The strategy was devised by HHS’s Interagency Pain Research Coordinating Committee, which includes representatives from a wide range of federal government agencies, doctors, scientists, patient advocates and the public. The president of our organization, Jan Chambers, served on this committee.

The strategy makes recommendations for improving overall pain care in America in six key areas: population research, prevention and care, disparities, service delivery and payment, professional education and training and public education and communication.

It calls for major changes in research funding, developing better procedures and measuring tools to improve and monitor the prevention and management of pain, reducing the barriers to care that people who suffer from chronic pain often face and increasing public awareness and understanding of the diagnosis.

 However, to date the strategy has not been funded or implemented, which leaves patients with hollow answers and no solution. We need Congress and the White House to make chronic pain a priority now by funding and implementing the plan.

Fibromyalgia’s invisibility and the public’s misunderstanding of its effects leaves many people afraid to reveal their diagnosis and suffering in silence. When I was diagnosed at 24 with the illness I thought my life was over. My once-healthy body suddenly felt badly bruised and broken even though on the outside I looked completely fine. I was even yelled at many times for using my disability parking pass, because people didn’t believe it was mine.

Chronic pain diseases like fibromyalgia cost Americans more than $635 billion a year in combined lost productivity and healthcare costs, which is higher than the annual costs of heart disease, cancer and diabetes combined. Chronic pain’s toll on the well-being of families is even higher. Children of parents with chronic pain are at increased risk for behavioral issues and chronic pain themselves.

Those who suffer from fibromyalgia could be your friends, coworkers, neighbors and family members, who have been suffering in silence with this disorder for years. More answers are out there, but patients need lawmakers to direct more time, personnel and funding toward finding them.

Sharon Waldrop is vice president of the National Fibromyalgia and Chronic Pain Association.