EULAR’s Fibromyalgia Recommendations Are More of The Same

EULAR’s Fibromyalgia Recommendations Are More of The Same

By Donna Gregory Burch

Earlier this month, the European League Against Rheumatism (EULAR) released its revised recommendations for the management of fibromyalgia.

Unfortunately, there’s 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.

Yep, I can hear the collective sigh and eye roll from here.

To their credit, the working group, comprised of 18 members from 12 European countries, did acknowledge not much has changed since its initial recommendations made back in 2005.

“Despite the very large increase in the amount of trial data summarized in meta-analyses, there are no major changes to the approach of managing patients with fibromyalgia, although we provide new evidence in support of some additional non-pharmacological therapies,” reads the report. “In addition, all the recommendations are now firmly evidence based.”

So there we have it. Despite millions of dollars spent on research, nothing much has changed in the past 10-plus years when it comes to treating fibromyalgia. I know I’m not the only one disappointed by this admission.

The report goes on to include recommendations on patient care.

“We now recommend that non-pharmacological therapy should be first-line therapy, and then if there is a lack of effect … there should be individualized therapy according to patient need, which may include pharmacological therapy,” reads the report.

In other words, when you go to the physician, he’s supposed to recommend exercise first, then send you home to do squats and walk around the block a few times. When you come back a few weeks later still complaining about being in pain, then he can talk to you about pharmaceutical options.

EULAR made it super easy for physicians to follow their directives by including a helpful little flow chart (see page 9 of the full report). I imagine these posted on exam room walls all around the world with physicians pointing and saying, “Ut, ut, ut, you haven’t passed the fitness test yet…”

Ugh.

Well, I always try to find the positive in every situation. Every time a new set of recommendations comes out, I print them out and devour them like a raunchy novel.

You know why? Because these reports give us some of the best data available on what will help us better manage our fibromyalgia symptoms. They are a concise, easy-to-read summary of the leading research to date.

So, I thought it would be helpful to break down EULAR’s recommendations. They made this easy for me by assigning each therapy a rating of strong for, weak for, weak against and strong against.

Based on the current research, those therapies falling into the “strong for” and “weak for” are supposed to be the most effective for managing fibromyalgia. The keywords there are “supposed to be.”

“Strong for” recommendation

 Out of all of the therapies evaluated, exercise was the only one to receive a “strong for” recommendation. The working group considered 20 reviews, which included more than 30 trials involving almost 2,500 patients. Despite a glut of studies, they were not able to reach a conclusion on if a certain type of exercise was more effective than another. Both land and water exercise seemed to improve symptoms.

“We were unanimous in providing a ‘strong for’ recommendation for the use of exercise, particularly given its effect on pain, physical function and well-being, availability, relatively low cost and lack of safety concerns,” read the report.

Yep, how many times have we heard that? There’s just one problem: Very few of us are actually well enough to exercise. It’s really a catch 22. They tell us we’ll get better if we exercise, but we can’t exercise until we feel better.

Moving on…

“Weak for” recommendations

  • Amitriptyline (aka Elavil) – This older tricyclic antidepressant showed mixed results in improving pain, sleep and fatigue.
  • Acupuncture – Studies found traditional and electric acupuncture were both effective at reducing fibromyalgia pain.
  • Cognitive behavioral therapy (CBT) – Overall, studies have found CBT to be effective at reducing pain and disability.
  • Cyclobenzaprine (aka Flexeril) – This commonly prescribed muscle relaxer is known to improve sleep in fibromyalgia, but has a high rate of side effects (mostly drowsiness, dizziness and headache).
  • Hydrotherapy/spa therapy – Reviews showed fibromyalgia patients who used hydrotherapy had a significant reduction in pain.
  • Meditative movement (qigong, yoga, tai chi, etc.) – EULAR was unable to make recommendations on individual types of meditative movement, but there is some evidence that these forms of exercise may improve sleep and fatigue.
  • Mindfulness – Mindfulness-based stress reduction was found to reduce pain. However, EULAR noted bias in some studies.
  • Multicomponent therapy – There’s some evidence that combining therapies may be more effective than monotherapy.
  • Pregabalin (aka Lyrica) – A Cochran review found patients using pregabalin were more likely to experience a 30 percent reduction in pain than those taking placebo. There were small improvements in sleep and fatigue, but no impact on disability. (EULAR said pregabalin’s older cousin, gabapentin, should be used “for research only,” presumably because there wasn’t enough data to give a recommendation.)
  • Serotonin-noradrenalin reuptake inhibitors (duloxetine aka Cymbalta, milnacipran aka Savella) – Duloxetine and milnacipran were both more likely to reduce fibromyalgia pain than placebo. There was less or no benefit on sleep and fatigue, depending on the study.
  • Tramadol (aka Ultram) – There’s some evidence that Tramadol, a weaker, synthetic opioid, may be effective at reducing fibromyalgia pain.

“Weak against” recommendations

  • Biofeedback – In trials, biofeedback reduced fibromyalgia pain, but EULAR cited studies were of poor quality.
  • Capsaicin – There was some evidence that capsaicin gives pain relief, but there’s limited research so far.
  • Hypnotherapy – There were mixed results when using hypnotherapy for fibromyalgia pain.
  • Massage – Overall, massage was not found to significantly reduce pain.
  • Monoamine oxidase inhibitors (pirlindole, moclobemide, etc.) – Studies showed a moderate reduction in pain, but less of an effect on sleep or fatigue.
  • NSAIDs (ibuprofen, naproxen, etc.) – There was no evidence of improvement when compared to placebo. (We should print these studies out and hand them to our physicians when they tell us to take some Aleve…)
  • S-Adenosyl methionine (SAM-e) – EULAR gave a “weak against” rating because there were only a few studies with a small number of patients. More studies are needed to assess toxicity and safety.
  • Selective serotonin reuptake inhibitors (Paxil, Prozac, Zoloft, Celexa, etc.) – Overall, SSRIs showed a moderate effect on pain. There was no effect on fatigue.

“Strong against” recommendations

  • Chiropractic – There have been limited studies on chiropractic care for fibromyalgia, and those that exist have been of poor quality with limited data. EULAR also cited safety concerns.
  • Corticosteroids (prednisone, etc.) and strong opioids (hydrocodone, fentanyl, codeine, etc.) – EULAR issued a “strong against” recommendation for both categories of drugs “on the basis of lack of evidence of efficacy and high risk of side effects/addiction reported in individual trials,” reads the report.
  • Growth hormone – EULAR cited safety concerns (sleep apnea, carpal tunnel syndrome) and says studies indicate the overall improvement in fibromyalgia patients is not “statistically significant.”
  • Other complementary/alternative therapies, such as guided imagery and homeopathy – There were flaws in the available studies. More research is needed to make a proper recommendation.
  • Sodium oxybate (aka Xyrem or GHB, the date rape drug) – Studies found small improvements in pain, sleep and fatigue. European and U.S. drug agencies have refused to approve Xyrem for fibromyalgia due to safety concerns.

So, what do you think? Do EULAR’s recommendations make sense? Share your feedback in the comments below!

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. 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 11 comments for this article
  1. Katherine Johnson at 12:32 pm

    So far, the medical community has been essentially useless in doing much to improve life for people with Fibromyalgia. While no one will disagree that exercise is a good idea for people with Fibromyalgia, it does give your doctor and very easy way to make you go away and do nothing for you. It also implies, that if you’re not able to exercise (like those with such severe fatigue they can barely stand), then you’re to “blame” for your illness, which has pretty much always be the “go to” reaction for most physicians anyway, either that or it’s all in your head. The medical profession has never been much good at treating chronic illness of any kind. So this reports was essentally useless. Personally, I gave up on getting help from the medical community ages ago, since they really have almost nothing to offer, I found my interactions with them usually did more harm than good. Currently I read every abstract I can find and check out all the research (unfortunately much of which is just as useless as this report)in hopes of finding something useful. At this point, I use supplements, Wellbutrin (fortunately most docs are all too happy to write rx for anti-depressants) and cannabis to allow me some function. Cannabis has been far more effective than the narcotics I was put on originally, which actually did little for the pain and made me itchy and nauseous all the time, and has the benefit of being a “take or leave” remedy that I don’t have to use all the time to keep from going into withdrawal.

  2. StevefromMA at 11:31 am

    DFWMOM,

    Most of us have tried most conceivable supplements with ( for me) no success for fibro. Would you mention what you have found effective for your daughter? It’s always possible that my closet full of them just holds the wrong ones.

  3. DFWMom at 2:48 am

    Meanwhile, Queen Mary University of London (QMUL) is fighting tooth and nail to avoid having to hand over their data from the deeply troubled PACE trial, and the Lancet has their fingers in their hears singling “la la la la la…” to try to avoid hearing calls for the retraction of that study — a corrupt research trial which has been used to justify claims that exercise is a good therapy for fibromyalgia.

    We might as well go back to leeches and bloodletting.

    Or, you could try what worked for my own daughter with fibro, which is to just give up on doctors, and discover the right supplements. Actually, we found that AFTER you treat and strengthen the body with the right nutrients, exercise becomes more feasible and it can start to help. It’s just that EULAR gets the cart before the horse.

  4. Zammer at 4:45 pm

    Linda–What evidence is there that low level laser is effective? Two physical therapists I know say it doesn’t, FDA approval notwithstanding. FDA approval is not a guarantee.
    Thank you.

  5. SrevefromMA at 4:44 pm

    My guess is that if the EULAR panel all developed fibromyalgia tomorrow we would see both a change in their recommendations and a great increase in varied but randomized, placebo controlled FM research.

    Now, back to my aerobic exercise…

  6. Tisha at 4:03 pm

    Have you ever looked into endermologie for relieving FM pain?

  7. Melissa at 11:48 am

    These are frustrating and a little short sighted. For example, I have a severe sleep struggle and amitriptyline (despite the research I have done since being put on it and wondering if it would have put me off ever trying it) and it helps with some of the widespread pain and near chronic headaches. And without this bare minimum (for me to sleep some) I could never exercise! Also, ibuprofen actually helps my neck (nothing stronger does, even opoids) but it helps nothing else. People with fibro are unique, we develop it in different ways and are affected in different ways so there can’t be one technique or medicine thatworks for us all. Quite a sad reflection of how some drs see us.

  8. Jeremy Goodwin, MS, MD at 9:59 am

    Thank you. I made s similar point in my brief comment when this was released. The recommendations are grossly insufficient, misleading and do not make clear the circumstances dictated by co morbidity and individual responses or lack thereof, and other reasons for not being able to undertake s recipe approach. I treat many hundreds with FMS. I know exactly why their eyes are rolling.
    M thank you for being one of the few who understand.

    And no one mentions the importance of genuine validation.

  9. connie at 8:46 am

    If I hear one more time how ineffective opiates are for fibromyalgia and chronic pain I just might explode! So many of the recommended therapies are just as addictive with more side effects! Having tried most of the recommended therapies with either no or negative effects I find that I am among those who need opioid therapy to have any quality of life.

  10. linda at 8:24 am

    Exercise can make it worse, I have found a physical therapist who has taught me so much about my posture, how to move, how to correct my misalignment,doing water exercise which is low impact but works the muscles 4 times harder,and you need a multidisciplinary approach. Low level laser light therapy was just approved in the US and literally zaps the pain out of trigger and tender points, it’s a miracle! Tens units are helpful as well and buprenorphine,yes, it’s an opoid! , helps chronic pain sufferers function and gain normalcy. I’m surprised such a new post just regurgitates the same old crap, much of what doesn’t work. This is 2016! Why is there not more progress in this area? For people that can’t tolerate the drugs and yet have constant pain and exhaustion, it’s disappointing. And honestly to tell sufferers to just exercise, is demeaning and insulting. You do need to get conditioned but need pain management to do so and it requires energy! Any doctor that tells you to use bengay or just exercise should be slapped! Seriously.

  11. Mark Ibsen MD at 7:21 am

    Thank you for a very thorough review.
    My FM patients get better
    Or
    At least not worse.
    I use many of the therapies described here.
    Sleep is essential.
    The best and safest medicine for sleep and pain and motion:
    Cannabis.

    I have scientific results.
    Each patient is their own controlled experiment!
    What works for one may not work for another.
    But
    This is for sure:
    When a patient is better, they know it.
    This is incontrovertible.
    These good news about trying therapies that are harmless is that you CAN.
    Thank you again.