When most people hear someone talking about the terrible pain of those suffering from Fibromyalgia, they may not be quite sure what that specifically entails. Often described as a disorder characterized by chronic widespread body pain, Fibromyalgia symptoms may include tenderness or stiffness of muscles, nerve pain associated with connective tissue and joint pain that is typically accompanied by fatigue, headache, sleep disturbances, brain fog and more. Known as “Fibro Fog,” memory lapses and a general fuzzy-headed feeling are scary and sometimes frightening.
Healthcare professionals treat this debilitating pain with prescribed medications that are most often painkillers of some kind. Because there is no exact science to treating Fibromyalgia, the combination of medications offered generally becomes a regimen of trial and error to provide relief. Unfortunately, this can lead to a cocktail of too many painkillers being taken together and the danger of addiction setting in.
Necie Edwards, founder of Fibro Patient and Education Support Organization, a 501 (c3) non-profit, has pioneered the effort to bringing greater awareness to sufferers of Fibromyalgia. Diagnosed in 2014 with the illness, she went to six different doctors before she was informed of her condition.
“I was having severe chest pain and my central nervous system was misfiring so badly,” she says. “I had to take a significant amount of time off from work so my body could calm down. When the doctor pressed a spot on my body, I would jump off the table.” After finally finding the right specialist, Edwards was prescribed a host of medications to begin the path of healing.
However, after going through several different treatment regimens without much success, she was unhappy with the lack of information and knowledge available to both healthcare providers and sufferers. That is when she started speaking to the public about educating and helping improve the quality of life for patients diagnosed with Fibromyalgia and other chronic pain conditions. This has included a Fibro support group that she hosts and as the group has grown, Edwards has become aware of the cycle of addiction from painkillers being given to patients.
“Because Fibromyalgia is a condition that affects every person differently, doctors do not have a specific plan of care. Therefore, they lean towards just trying to make the severe pain stop. Drugs like OxyContin, Lyrica, and various opioid medications are most often abused. Lyrica, a medication that has been heavily prescribed specifically for Fibromyalgia, has serious addictive properties that users have admitted having a difficult time weaning themselves off of.”
Edwards also states that opioid medications are completely ineffective for Fibromyalgia even though they are given out regularly and this mistake in medical care can cause a cycle of addiction. Patients take these pills to alleviate their pain so they can function day to day. When this regimen stops working, they go back for additional help only to be given another pain med in its place or a higher dose of what they are already taking. In the attempt to help themselves feel better, Fibromyalgia and chronic pain sufferers are victims to the drugs that hook them.
According to the Journal of Clinical Rheumatology, it is likely that chronic opioid administration in patients with musculoskeletal pain is associated with adaptation changes in the brain. These central adaptations may produce the clinical picture of dependence, opioid-seeking behaviors, and difficulty in weaning patients off opioid medications. It has long been known that some patients receiving opioid medication over time may need to increase the dose to maintain analgesia.
When asked what medications can be used without risk of addiction, Edwards says, “That’s a hard question to answer because more than one drug is being prescribed and the answer is individual to each patient’s symptoms and their doctor’s recommendations.”
She goes on, “More is involved with Fibromyalgia because there is often anxiety, depression, inflammation of the joints and other symptoms that have to be addressed. For a long time, Fibromyalgia was not even considered a diagnosis. It was known as a condition brought on by something else. But that has since changed and I’m glad because now it can be dealt with directly instead of a guessing game."
With more than a third of the 44,000 drug-overdose deaths reported in 2013 (the most recent year for which estimates are available) being attributed to pharmaceutical opioids, Edwards believes it is vitally important for people to be active in their own healthcare and to not be passive. She advises that everyone asks as many questions as possible and request a holistic alternative before anything else. In her eyes, no one knows their body better than themselves so it is important to do some research.
“As Ashley Judd quoted, ‘Your mind hears everything your body is saying,’ so pay very close attention to it,” Necie adds. “So many people are married to their disease because a doctor tells them to take a specific pill, even if it is not the best choice for them. Get second and third opinions and maybe take a recorder with you or a family member to help you remember in case of memory lapses or Fibro Fog.”
A workshop leader, keynote speaker, and health conference event coordinator, Necie Edwards also hosts “Fibromyalgia Talks,” a talk show on public access TV that features conversations with healthcare providers, holistic/complementary medicine practitioners, clergy members, public service officials, and fibromyalgia patients. Additionally, there’s “The Fibro Health Detective Show” podcast where she often interviews patients, physicians, and other healthcare providers discussing clues about what causes fibromyalgia and how to overcome it in daily life.
 Chronic Opioid Use in Fibromyalgia Syndrome, Jacob T. Painter, PharmD, MBA, PhD; Leslie J. Crofford, MD
Disclosures, J Clin Rheumatol. 2013;19(2):72-77. Chu LF, Angst MS, Clark D. Opioid-induced hyperalgesia in humans: molecular mechanisms and clinical considerations. Clin J Pain. 2008;24:479–496.
 N Engl J Med 2016; 374:1253-1263March 31, 2016DOI: 10.1056/NEJMra1507771