By Donna Gregory Burch
As I reviewed headline after headline to compile this list of top fibromyalgia-related news stories from 2016, I became more and more frustrated. Another year has passed, and yet again we’ve learned little about fibromyalgia. We don’t know what causes it. There’s no widely accepted diagnostic test. We still don’t have any treatments that consistently work well for everyone. When coupled with the federal government’s crackdown on opioids and natural pain relievers, 2016 definitely wasn’t a year of progress for the fibromyalgia community.
On the bright side, we do have a few new medications in the works, and the discovery of a unique brain signature among fibromyalgia patients sounds promising. So, in no particular order, let’s take a few minutes to reflect back on some of last year’s top fibromyalgia-related headlines.
There was a lot of anger and confusion when the Centers for Disease Control and Prevention (CDC) released new guidelines for primary-care physicians regarding the prescribing of opioids. Unfortunately, many physicians didn’t familiarize themselves with the voluntary guidelines and began rapidly weaning patients off of their longtime pain medications. Since the guidelines were enacted, I’ve lost count of the number of accounts I’ve heard of patients being left in pain after their doctors refused to refill their opioid prescriptions. In desperation, some patients have committed suicide. I even had one reader whose doctor stopped her Celebrex prescription because “the FDA told him he had to do it.” This example sheds light on the level of ignorance among some in the medical community since Celebrex isn’t an opioid and the U.S. Food and Drug Administration (FDA) has nothing to do with the guidelines.
There are currently three FDA-approved drugs to treat fibromyalgia. Unfortunately, none of them work very well. The best of the three, Cymbalta, only provides a 50 percent reduction in pain in about 35 percent of patients. Earlier this year, I reported that three new fibromyalgia drugs are either in clinical trials or are heading to trial soon. In September, one of those drugs, Tonmya, failed to meet its pain-relieving goal during a phase III trial. As a result, drugmaker Tonix is no longer seeking FDA approval for Tonmya as a fibromyalgia treatment.
On a brighter note, IMC-1, a new antiviral/anti-inflammatory drug combo, heads to a phase III trial this year and could be a game-changer for fibromyalgia sufferers who have underlying viral infections. And in December, Japanese researchers released phase II trial data indicating the antidepressant mirtazapine (Remeron) significantly reduces fibromyalgia pain.
Thousands of patients filed suit against Eli Lilly over the past couple of years, claiming the drugmaker was not forthcoming about the frequency and severity of Cymbalta’s withdrawal symptoms. The plaintiffs in the cases said they experienced headaches, dizziness, nausea, nightmares, anxiety, mania, suicidal ideation, brain zaps (which feel like a lightning bolt going off inside the head) and other symptoms when they stopped taking Cymbalta. Eli Lilly quietly settled these lawsuits in October. (I’ve reported extensively on the lawsuits on my blog, FedUpwithFatigue.com.)
- The feds target natural pain relievers
While the CDC vilifies opioids, the Drug Enforcement Administration (DEA) continues its demonization of natural pain relievers, like kratom and CBD oil. In September, thousands of kratom users rallied together after the DEA announced its plan to add the active ingredients of the Asian plant, which is used to treat pain and addiction, to its list of schedule I controlled substances. The DEA received more than 20,000 comments from the public regarding the proposed ban. At press time, the DEA is still reviewing those comments and has not issued a final decision on kratom’s legal status.
Then in December, the DEA flexed its muscle again by issuing a new rule stating all forms of CBD oil are classified as schedule I drugs. It’s too soon to tell what the fallout from this rule will be. The Obama administration has allowed dispensaries to sell cannabis (including CBD oil) in states where it’s been legalized, but that could change under the more conservative leadership of incoming President Donald Trump.
- New research findings could accelerate diagnosis and treatment
2016 definitely wasn’t filled with innovative fibromyalgia research studies, but one of the year’s most promising findings comes out of the University of Colorado Boulder. Researchers there discovered a brain signature that identifies patients with fibromyalgia with 93 percent accuracy. While the study involved only a small number of patients, the finding could eventually lead to better diagnosis and treatment of fibromyalgia.
Also on the diagnostic front, Spanish researchers found that the retinal nerve fiber layer is atrophied in fibromyalgia patients. The discovery was made using a non-invasive eye test called optical coherence tomography (OCT), which uses light waves to take cross-sectional photos of the retina. The finding could eventually be used to speed fibromyalgia diagnosis.
The National Institute of Allergy and Infectious Diseases found that “multiple copies of the alpha tryptase gene drive tryptase elevations and may contribute” to symptoms associated with fibromyalgia, ME/CFS, irritable bowel syndrome and other conditions. As blogger Cort Johnson reports, a cure could be closer for those who have this genetic mutation.
A 2016 Canadian study revealed that combining pregabalin (Lyrica) and duloxetine (Cymbalta) together is more effective at fighting fibromyalgia pain than taking the drugs separately.
Canadian researchers confirmed what many fibromyalgia sufferers already knew: Pregabalin (Lyrica) and duloxetine (Cymbalta) aren’t very effective at reducing pain and are way overprescribed by physicians.
In July, the European League Against Rheumatism (EULAR) released its revised recommendations for the management of fibromyalgia. Unfortunately, there was nothing really new about EULAR’s latest report. The group’s main conclusion is something every fibromyalgia sufferer has heard from their physician: “Based on meta-analyses, the only ‘strong for’ therapy-based recommendation in the guidelines was exercise,” read the report.
- Researchers still think exercise and meditation are the answer
As with previous years, there were numerous studies indicating various forms of physical exercise were effective at reducing fibromyalgia symptoms. Take your pick from tai chi, swimming, resistance training and ai chi water therapy, among others. There were also various studies that supported the use of mind-body treatments, such as mindfulness and acupuncture.
As a fibromyalgia sufferer, I am so frustrated by researchers’ continued focus on exercise and mind-body treatments. Yes, even common sense would tell us that it’s good for us to exercise, eat right and keep our stress hormones low, but that’s not a cure for fibromyalgia. I wish researchers would stop wasting time studying the obvious. We need researchers to take fibromyalgia and its comorbidities seriously. Our bodies didn’t just decide to go haywire for no reason. There has to be an underlying cause for our pain, fatigue and other symptoms, and no amount of walking or yoga is going to fix that!
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.