A Year in Review: 2016’s Top Fibromyalgia Stories

A Year in Review: 2016’s Top Fibromyalgia Stories

By Donna Gregory Burch

Donna Gregory Burch

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.

  1. CDC opioid guidelines released

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.

  1. Three new fibromyalgia 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.

  1. 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.)

  1. 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.

  1. 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.

  1. One gene, many disorders: Could one gene help explain ME/CFS, FM, POTS, IBS, EDS, IBS and others

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.

  1. Double up these two drugs to fight fibromyalgia pain

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.

  1. Common drug for diabetic foot pain isn’t effective, B.C. researchers say

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.

  1. EULAR’s fibromyalgia 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.

  1. 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 chiswimmingresistance 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.

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Authored by: Donna Gregory Burch

There are 21 comments for this article
  1. Sandy M. at 3:54 pm

    Seems to me that some of these so-called remedies, perhaps not this article, but some of these we read about that they are researching or at least mentioning we should do, I have already been thru all this …..as I’m sure most of you have been thru or tried the medications they are referring us or talking about now. I’ve been there, done that. I have Rods in my back and can’t do YOGA, I walk up and down 13 stairs a day in my home probably more than I should in a day, I try to walk thru the grocery store with my husband for a few items, not often, I need help getting ready, therefore, by the time I do get ready, I’m worn out and need to lay down. I feel like the doctors don’t realize I’m trying to get some exercise. I was always a WORKAHOLIC, staying late at the office to work, working on Saturdays, then cleaning, doing laundry and watching grandchildren too. Thank GOD they have kept me sane. I just can’t do the things with them I wish I could.

    It took me 4 years and a truckload of medications, plus trial and error before I found a “cocktail” of medications with the help of my neurologist, my heart doctor and PCP after my right hemorrhage in the thalamus. My entire left side is impacted and seems very few doctors have ever heard of “Thalamic Pain Syndrome” or “Central Pain” as it is now more referred as. Most of them say they know, but they won’t even look at a few articles I bring with me. It’s obvious by their treatment, they don’t know either. Some others I have communicated with have strokes in the thalamus and do not have the PAIN SYNDROME. It’s a strange condition for me anyway, I never knew I had a thalamus, I was shocked to find out all it does! I also went thru 12 years of facet injections,Lumbar Selective Nerve Root Injections, one of which caused me to go thru a Blood Patch, steroid injections, Physical Therapy, three different pain management clinic and I’m not going into everything here again, however, I had a deformed back and Scoliosis. With my cognitive problems, it took me awhile to realize that they were doing nothing for me. Why did I have to go elsewhere to find the true results of my back pain. Perhaps if I had the surgery earlier, it might have been more successful. I have to give credit to my amazing Spinal Surgeon, Dr. Buchowski at Washington Univ. (Barnes) in St. Louis, MO to tell me I was giong to end up in a wheelchair, perhaps paralyzed and he had 24 different X-Rays he had up and I couldn’t believe my eyes, it looked just like a backward “letter C”, I do not lean over to one side, and while I stilll have pain, it’s a different kind of pain. It was an eight hour surgery, I knew it was more than lumbar pain. After I went thru a painful discogram, and many other type of injections, MRI’s, etc., I still had this pain syndrome to contend with, keeping me miserable and in bed. This pain is a constant horrific, burning, stabbing, indescribable painful sensations, I’ve read some of Dr. Kenneth McHenry’s articles regarding this condition. My neurologist said he had only maybe 2 others in all his years of medicine that had this awful, pain syndrome I have. After finding medications that give me a little relief, the one opoid I take, which is very mild, low dose anyway too me about 12 years to say “Yes” I would try it, I was at my wits end!, medications that give us an hour or two of relief, some days not that much. Many nights hurting so bad I can’t sleep, but not wanting to take anything for my pain, except Neurontin, I cannot take the generic, which I kept trying to take, but just doesn’t help me at all, I have to pay for the name brand, so you know it does help, I knew the day would come to this, when we the people in PAIN would no longer be able to get our meds, while the JUNKIES and HOLLYWOOD Elites? I guess you call them……., along with top government officials would be able to continue gertting what they needed. The federal narcotic agencies have been accused of creating a public hysteria against all drugs, which puts legitimate pain treatment into a suspect category. It’s like my Neurologist told me, who after over 40 years of practice said, We are like Diabetics, we don’t take it to get high or just to take a pill, my gosh what is a HIGH? I’ve never had one. We take it because we have to! Especially when we are so desperate, we need a little relief. GOD Help this country. I thank all the wonderful doctors here who help us, Ed for all the time he spends with us and this website, and all of you who understand it’s difficult to exactly put into words what I want to say, but I also thank so many of you here who post how you feel, and you hit the nail on the head every time. Thanks for listening. Oh, I’m 69 years old, I don’t plan to be an addict at my age, my gosh, just give me my medications without all the questions, that I’ve been thru over and over; now I’m even have trouble getting my Zanaflex (I take the generic) for spascitity (not spelled correctly either) and let me be! You know what I mean?

  2. Tim Mason at 6:25 pm

    That’s another good one Doc. and suitable for printing and filing under Pain.Hist for my files.
    I intended to say that in some old cultures the “bath” was used early in life and continued in old age. I believe that the Swedish and Turks practice some of this all their lives. I have only had dry needling once and it was during a rehab session for a total hip replacement in 2013. It seemed to work long enough to get me home. I was handed off the main therapist during the holidays and he was not aware of my spine problem, never looked at my record. He was having me lay prone and lift my legs. I could not of course lift my legs due to a spinal injury that was scheduled for an ALIF 360 later in they year. He manually pulled my right leg up in frustration. I guess I could have attempted to sue him, but I did not.
    Reading about the baths does indeed give a visual of cold damp Shakespearian castle full of echoing cries for help.
    The Sioux Indian Sweat Lodge would perhaps be more appealing. A Sioux Indian took down a hickory tree for me for free just for his lodge that operates on full moon. He invited experience it some time with his people. I have not the courage.
    I look at the old graying dog on the porch, watch him rise up from his slumber. He moves ever so slowly to his next napping place. This to is the fate of mankind. A young hound is easily excited and reacts quickly in his young age.
    I am pleased with my pain management physician. While giving me an intra-articular injection he told me that he had one of his technicians give him an injection like mine. He said “If I am doing this to my patients, I must know what it feels like”
    I have to respect that.

  3. Gotnerve at 10:07 am

    Even with evidence of chronic nerve, muscle and tendon injuries hat have failed to heal, my pain is blamed on fibro and not these other debilitating injuries. Been in pain more than 5 years and no empathy or care except continued evidence of progressive trauma and nerve entrapment.

  4. Dr John Quintner, Consultant Physician in Rheumatology and Pain Medicine (retired) at 5:45 pm

    Tim, I love delving into medical history as it helps me to understand various contemporary issues in pain management from a much broader perspective. For example, the techniques of “dry needling” and “fascial manipulation” so popular with physical therapists all over the world are as ineffective as those that were in fashion over a century or ago. And our currently available drugs for pain do not appear to be fare much better in comparison. If you read what poor Alphonse Daudet had to endure, you will see what I mean: http://www.fmperplex.com/2016/05/03/la-doulou-provencal-word-for-pain/

  5. Holly Gnaedinger at 5:21 pm

    Further to my post of Jan. 7, I am on the antidepressant Cipralex, not Celebrex, apologies for the error. I have also had a wipe-out of a week after a stellar yoga class turned into over-exertion and pain and huge fatigue. I hope this week will be better….. I am very thankful that I do not need to work–I have huge sympathy for those who suffer and have to work, I can’t imagine how difficult it is.

  6. Tim Mason at 6:07 am

    Thank you for this excellent material. I found the reference to the Turkish Bath and massage quite interesting. I can see cultures have historically dealt with this type of dysfunction with techniques that deeply ingrained in their societies. The baths and massage combined with meditation and various teas do demand respect and continued use in a modern world. Our minds (brains) do also get polluted via constant media hype in this industrial world in which we live and work.

  7. Geoff Sims at 11:25 am

    Hi Jade,

    I’m not sure what happened to your original comment. While we do review all comments, it’s pretty rare that we delete them (although we do edit profanities out). I apologize for the inconvenience.

    Thanks for your readership and comments!

  8. Jade at 11:04 am

    My comments were apparently reviewed amd NOT approved. I guess the moderators thought It wasn’t appropriate. Perhaps my rant was too angry regarding my situation with crps/fibromyalgia/Osteoarthritis. As well as a bad neck injury from a car accident which I just have to live with as surgery is not an option. Thank you for your letter I hope soon the patients who need this care will get it. The guidelines for the pain patient amd the drug seekers must be differentiated and we must be treated with the dignity amd respect we deserve. We were once productive lively functioning people who never asked for this life!

  9. Helen McInerney at 4:36 pm

    I’ve found huge relief with Low Dose Naltrexone – LDN. About 90% pain relief and by pacing I’ve reduced fatigue. many FB groups and websites exist for advice. It takes a while to work but I wouldn’t be without it.

  10. Dr John Quintner, Consultant Physician in Rheumatology and Pain Medicine (retired) at 6:13 pm

    Cindy, no one can stand in front of you and honestly deny that your symptoms are real.

    Nor are you to be held responsible for the failings in the construct of fibromyalgia.

    But we do at least have a scientifically testable hypothetical explanation for your complaints.

    And we plan to update our hypothesis in 2017 by incorporating the supporting scientific and epidemiological evidence that has since become available.

    Here is a link that will take you to our 2011 hypothesis paper: http://pudendalnerve.com.au//website/wp-content/uploads/2013/09/An%20Evol%20Stress-Response%20Hypothesis%20for%20CWP.pdf

    Don’t lose hope!

  11. Dr John Quintner, Consultant Physician in Rheumatology and Pain Medicine (retired) at 1:41 pm

    Tim, this sobering article could well be read with profit (in knowledge) by every medical practitioner who works in the fields of Rheumatology and Pain Medicine.

    The other big issue needing to be aired and discussed is the popular proposition that fibromyalgia (chronic widespread pain) can be initiated and maintained by input from damaged or dysfunctional muscles.

    This scientifically flawed idea has generated much in the way of ineffective treatment, at great cost to pain sufferers and to third party payers. It needs to be put to rest once and for all.

    To this end I have taken the liberty of attaching the link to my article which addresses the issue from an historical viewpoint: http://www.fmperplex.com/2015/07/14/could-fibrositis-be-making-a-comeback/

  12. Cindy at 10:21 am

    I appreciate the time and effort in writing this article. I’m beginning to feel really defeated and iverwhellmed with my chronic pain and fatigue (dx with fibro 10 years) I was glad to see the lyrica commercial putting emphasis on fibromyalgia. It was all a joke and honestly a sales tactic! I feel we are worse off today and not believed, than 10 years ago! I will not stop fighting and telling my bout with this debilitating disease!

  13. Tim Mason at 8:14 pm

    Dr. John Quintner, that was a very interesting article. I would never have found that. I love to read peer reviewed articles with good statistical data historical references like that.
    Thank You.

  14. Dr John Quintner, Physician in Rheumatology and Pain Medicine (retired) at 1:39 pm

    Donna, here are some more reasons to explain your frustration.

    Since it was first officially launched in 1990 by the American College of Rheumatology, fibromyalgia has become an accepted but highly controversial clinical condition.

    Now we are witnessing the absurd situation where the need to make the diagnosis in an increasing number of people in the community is being driven by pharmaceutical companies.

    This article by Fred Wolfe and Brian Walitt pulls no punches and deserves to be closely read: http://www.fmperplex.com/2016/12/07/75-of-persons-in-the-general-population-diagnosed-with-fibromyalgia-dont-have-it-but-it-is-worse-than-that/

    As you may recall, Professor Fred Wolfe was the lead author of the various important papers on the classification criteria for fibromyalgia.

    He has also suggested that the vast majority of fibromyalgia research is worthless: http://www.fmperplex.com/2016/08/30/most-fibromyalgia-research-is-worthless/

    You may well ask: “Quo vadis, fibromyalgia?”

  15. Holly Gnaedinger at 6:10 pm

    I very much encourage people to try everything they hear as a possible relief from the agony of fibromyalgia. I have been on the journey for about 10 years and am now living a reasonable life after giving up everything that defined me. The mental journey has been as difficult as the physical one. I am on Celebrex, and several natural supplements–magnesium glycinate being the most critical I think; vitamin B’s are also important. I rejected the common fibro drugs like Cymalta as they turned me into a zombie. The book “The complete Fibromyalgia Health, Diet Guide and Cookbook” by doctors Louise McCrindle and Alison Bested was profoundly important in pointing out a path out of the abyss–a combination of diet, exercise and moderation of activity. It may not be a cure but it sure does make a good life possible again. But it takes a great deal of work and experimentation and admittedly money for supplements and exercise programs (I do yoga and meditation, and walking). I still have fatigue, but not the terrible pain. I no longer feel suicidal. Please do not give up, continue to search for what works for you.

  16. Martha Alf at 3:34 pm

    Very informative articles. I have had fibromyalgia since June 1980 the terrible back pain began the day after I was diagnosed with breast cancer. The trauma of that diagnosis was at least part of the reason Some months later an article in Parade magazine by a doctor Nunes led to my self diagnosis. He advised Naproxen for pain and relaxation which helped me. Then a physical therapist gradually showed me how to stretch out my muscles which had become very tight I received further help from the then new Shape magazines articles on body stretches. Then KCET 6am program yoga stretches helped I even tried magnets and and magnesium glycinate mixed with maleate avid from apples three times a day which helped a fibro MD appeared in 1985 an prescribed Soma Ativan and occasionally percocet I am a well known artist and my production slowed. I am now 86. I eat very healthfully in the last nine years my husband my son and many of my closest friend have all died. Since then I have been hospitalized for depression cementia schizoidaffective disorder Alzheimer’s and 15 other disorders my fibromyalgia ha not been addressed. I have been given drugs like Remeron which has ballooned me to 170 pounds from 130. I have a forty inch waist if you can find it I all my central flab. All five hospitalizations lasted four months or more I was gowned diapered dragged with Abilify Mentamine Depacote Trazadone all with terrible side effects. And five times I had two months physical therapy to learn to walk again. This time out I’m returning to my art and my art career determined to conquer theat world all over again. Look Me up on Facebook. With hope for fibro transformations. Martha Alf 12-7-17
    V

  17. SHIRLEY ERESMAN at 1:59 pm

    Isn’t that just great that MDs are giving this kind of info, hope they get fibromyalgia sometime in their lifetime and see how they deal with the sleeplessness and the constant pain, My daughter has been dealing with this since an auto accident in 2001, good she finally found a pain specialist to help with needles in the base of her neck, and other areas to help deal with the
    never ending cycle of this condition. Hope there will be a better way of helping people soon.

  18. connie at 5:18 am

    Interesting but as usual nothing useful to those of us who continue to suffer with fibromyalgia. It was possible to keep moving until the CDC in their almighty wisdom decided that the medication I need, at the level I need doesn’t help especially when fibromyalgia isn’t the only thing causing my pain like many people. I have pretty much lost hope of having a life

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