01.16.2017

A year in review: 2016’s top fibromyalgia news

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This article was originally published on NationalPainReport.com and is being republished here with permission from the editor. 

Another year has passed. What have we learned new about fibromyalgia? Check out 2016's top fibromyalgia news and research curated by FedUpwithFatigue.com.

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.

1. CDC releases new opioid prescribing guidelines

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.

2. Three new fibro drugs could be on the way

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.

3. Eli Lilly settles Cymbalta withdrawal lawsuits

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.)

4. 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.

5. Research could lead to new diagnostic tools

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.

6. Genetic finding links multiple conditions

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.

7. Better together than separate

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.

8. Common fibro drugs aren’t very effective

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.

9. EULAR’s recommendations are more of the same

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.

10. Researchers still think exercise is 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 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!

Now it’s your turn: Would you add anything to this list? Share in the comments below!

What’s 2017 going to bring?

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Comments

  1. Seeing the year laid out like this is tough, it seems like we still have such a long way to go when it comes to treatment for Fibromyalgia patients. Though it is encouraging to see more drugs being tested.

    • Donna Gregory/FedUpwithFatigue.com says:

      That’s exactly how I felt. It seems like they are no closer to figuring out how it works; they just keep trying to throw antidepressants at it. 🙁

  2. Oxytocin- injections or nasal spray – has anyone tried this?

  3. Some very encouraging things going on that are restoring peoples hope. Thanks so much for sharing! <3

  4. Keith Blowers says:

    Has there been any testing with low dose Naltrexone?

    • Donna Gregory/FedUpwithFatigue.com says:

      There have been two LDN/fibromyalgia studies at Stanford University. University of Alabama at Birmingham is planning more LDN/fibro studies this year and also one for ME/CFS.

      • Joyce McCallum says:

        I have taken LDN for about a year for Fibro with good results. Less pain (not pain free but more tolerable), still have knots & muscle spasms back of head and neck and shoulders but headaches are actually less frequent. Fatigue seems to be less. It has been the most effective treatment I have tried. I have tried most of the treatments mentioned with zero effect other than medications making me stupid! CBD oil was effective in helping pain. I tried it briefly but due to my job (urine testing) & cost of high quality CBD making it prohibitive for me right now. I am trying GcMaf now but having difficulty with Herx. but am also having some positive effects from it.

        • Donna Gregory/FedUpwithFatigue.com says:

          Hey Joyce, I’m glad you’re finding LDN helpful. It’s one of the only things that’s helped me too. I started using a GcMAF cream a few weeks ago. Not sure if it’s doing anything or not. The first week I had some radical improvement in sleep but it didn’t last.

      • I brought those studies from Stanford to both my Rheumatologist and Pain Management Doctor. Neither would consider since not FDA approved for. My psychiatrist only considered if could prescribe it for an a brief addiction problem I had in my late teens… I’m now forty. (And the teen issue stemmed from complex trauma…’addiction’ went away once able to move away from home and sort myself.) I’ve found online forums to get it prescribed by going to a doctor online in another state or city … i.e. becoming their patient to trying to for LDN treated fibro. Even looked into ways to order it internationally somehow. Haven’t tried yet.

        • Donna Gregory/FedUpwithFatigue.com says:

          Hey Rebel Mom, I ran into the same problem w/ my local doctors. No one would prescribe it b/c they weren’t familiar with it. Well, I really wanted to try it, so where there’s a will, there’s a way. I ended up doing a phone consult (had to pay out of pocket for it) w/ a doctor in New York City who is an LDN expert. Since then, I’ve used http://www.ldndoctor.com, which offers online LDN consults – again, it’s pay out of pocket, but if LDN works, then it’s worth every dollar. Dr. Handler w/ LDNDoctor.com is fantastic. She was even able to make some extra suggestions to me re: my fibro treatment. I recommend them to people who are having an issue finding a local physician to prescribe LDN. In some ways, it’s actually better to use an LDN expert initially b/c a lot of regular doctors flub the prescription and end up writing it for too high of a dose. Most people have the best results when they start at .5-1.5 mg and work up. Too many doctors start at 4.5mg b/c that’s what was used in the trials and then patients get frustrated b/c they’re having side effects early on and give up. Starting low and gradually increasing dosage over time usually mitigates any side effects. I hope this helps. If you need more help finding a physician, let me know b/c there are some other resources I can send your way. But LDNDoctor.com is really the one that I recommend the most b/c it’s so easy and Dr. Handler is top notch.

  5. Kay Ward says:

    I have just read your post for the first time. I have been diagnosed with FB for 20 years and I had an uncle who had it. I have a neurologist who is telling me I also have CFS. So I know how it feels. I took Cymbalta for a some time. About 18 months ago I had a spasm in my face and ears. I also have hands that tremble and other problems. The second time I had the facial spasm my GP sent me to the neurologist to see if I could have Parkinson’s. I was diagnosed with Essential Tremors. He showed me a LONG list of meds which can cause ET. Are you familiar with this? I am distressed that this medication I took in good faith has caused a permanent damage to me. Getting off Cymbalta will not reverse the problem. I understand there have been Class Action law suits. I have not researched it. My question is to ask if you have been aware of what Cymbalta can do. If so, I would appreciate some comments from you concerning this. Thank you.Kay

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Kay, yes, I have written extensively about Cymbalta’s withdrawal effects and the lawsuits. I have a resources page that you might find helpful. It includes all of the articles I’ve written plus links to support groups, other news stories, etc. I hope this helps! http://fedupwithfatigue.com/cymbalta-lawsuits/

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