08.01.2016

EULAR’s revised fibromyalgia recommendations are more of the same

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This story about EULAR’s revised fibromyalgia recommendations was originally published on NationalPainReport.com. It is being republished here with permission from the editor.

The European League Against Rheumatism has released revised recommendations for fibromyalgia treatment. Exercise is their top therapy of choice.

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, ugh, 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 it simple 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 to treat fibromyalgia 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. (Click here to read more about research related to using opioids for fibromyalgia.)

“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. (I shared my own experience with SAM-e in a recent post.)
  • 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!

This post is part of Being Fibro Mom’s Chronic Friday Linkup!

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Comments

  1. I read the article on this site about the rise of fibromyalgia misdiagnosis on the rise and I’m happy that I seen this bc I thought I’d share my story and maybe it can help some of you out there suffering in a ton of pain that can’t seem to ever really quelled and that probably aren’t getting the help you need.
    Back in 2008 is when I started to be really effected..I went to my primary care Dr. At 22 yrs old and I told him I’m constantly in alot of pain, all over. I explained it was really effecting my life..I was getting massages every day just about on my lunch breaks..sometimes I’d just cry in my car..he told me based on my symptoms I verbally told him it was fibromyalgia..he gave me a weak muscles relaxer and sent me on my way..
    It only got worse..each Dr. just would give me gabapentin or Motrin..I’ll skip ahead to 2012..I had been frequently in the hospital for what I called pain attacks (which I know now is called breakthrough pain) so much that they red flagged me! I would come in crying n holding my body,y hips kept popping out of my sockets without me doing anything to cause it..I finally researched to find a specialist who could help me..I went to see a rhematologist in 2013..she did alot of tests, n she had found that I had serious disease called ehlers danlos..it’s a rare connective tissue and it has subtypes..I have the hypermobility in my bones..so now bc of that my bones are slowly breaking down..

    This disease changed my life..I now also hve osteoarthritis pretty much all over, I was also diagnosed with spinal stenosis..and if I didn’t say to my primary Dr and said this isn’t fibromyalgia..there is really something wrong..I need a referral to a rhematologist..I never would have known and I wouldn’t have gotten the treatment I need.
    Drs are lazy..you have to be your own Dr, take charge and don’t stop till you get an answer..
    I forgot to mention, bc of the pain I applied for disability in 2012..bc of my misdiagnosed, I got denied 2 times! When I finally had a diagnosis and I went to my disability hearing I finally got my disability..I went through hell.
    I hope my story helped someone..

  2. Louise Hoy says:

    Like most of us I’ve found my own way to help myself. I have myofascial trigger points as part of my fibro in many places on my back, diagnosed by my rheumatologist. After crying after work most days because the pain was so bad I enlisted the help of a massage therapist who specialises in myofascial release therapy. The therapy is extremely painful at times, but after 6 months I have a lot less pain in my back than I did before. With the help of my partner I have a fitness programme which keeps me as well as I can be. And I can usually gauge what I can do on any given day. So this helps me along with amitriptyline, gabapentin and other drugs I have to take for inflammatory arthritis. Recently researched and had done a daith piercing (cartilage earring piercing) which has really helped with the migraines I’ve had since a teenager. I’ve also learnt not to expect cure, help from pain killers, understanding from medics especially about fatigue. But to look for what I can do to enjoy my life, what I can let go to improve my life (a clean house)

  3. Exercise doesn’t work for me at all. How could I exercise when it is already hard to walk 10 minutes?! Only in a doctor’s mind it might work. But a doctor has never seen me crawling out of the bed in the morning. Not one of them has had a real treatment plan besides exercise and weight loss, no matter if the doctor was specialized in rheumatism, orthopedics, surgery, pain treatment… Some prescribed antidepressants or muscle relaxants – all I that I had are listet above. But those side effects made my every day life even harder than without them.

    I have been at an excercising group – here in Germany your healt insurance pays some of them as a treatment. That group was horrible. Noone there has been diagnosed with the Fibromyalgia Syndrome. Most of them were there because of their chonic back pain. I never managed to even get through the warm up.

    To me it is very helpful to have acupunkture, osteopathy (headache treatment that goes upwards from the neck muscles) and on a regulary basis massages (to get my back muscles a little bit more relaxed). Again, no doctor – and I have seen a lot over the last 8 years- told me about that, I just tried so many things and found out what’s good for me. As stretching ist helpful to me, I’m thinking about tai chi right now. I read at the New England Journal of Medicine (2010) about it and it may be the exercise that I could handle.

  4. Shelly Reeves says:

    I find it beyond frustrating to read these “guidelines.” Each of us is different. Chances are we each have other health issues along with the fibromyalgia that our health care team are trying to manage. Luckily, I have chronic migraine and was seeing a pain management doctor when the fibromyalgia started to rear its ugly head. I was already on an opioid as a last ditch treatment for the once or twice per week intractable migraines, so we upped the opioid as needed to treat the fibromyalgia pain. We tried Cymbalta, gabapentin and are now starting Lyrica. Hopefully, the Lyrica will work (for $300/month!). In the meantime, the opioids ($5/month) give me part of my life back. I can no longer go into my office so I’ve cut my hours WAY back and work from home. That has reduced some of the stress of trying to put on a happy, fake, pain-free face everyday. On the other hand, I’m stressed out about paying for the Lyrica. CBT, massage, acupuncture – didn’t work for me and exercise is elusive on a good day – impossible on a bad day. I’m thankful that I’ve found online support groups!!

  5. It’s very frustrating to me! When I am able to exercise I pay for it for days after. I do still try to get my body moving each day but it doesn’t seem to lessen any of my symptoms. I do it because I know it’s what’s best for my over-all health. I just need to find the level of intensity that works.
    I’m on or have tried a few of the “weak for” medications. Right now I feel like I’m on the best mix to date and I believe they have offered the most relief.

    • Donna Gregory/FedUpwithFatigue.com says:

      Exercising is frustrating for me too. My last doctor had told me to start walking a few minutes a day. I have a treadmill, which makes it convenient, but even 5 minutes at a slow pace sometimes feels like too much. 🙁

  6. Hi Donna,
    Thank you for your post! It’s interesting just how many of the recommendations, both for and against on EULAR’S list, I tried throughout my struggle with fibromyalgia. There certainly are no revelations or clues to the quick fix and magic cure we are all hoping for.
    I finally received the help I so desperately needed after exhausting all of the medical help along with whatever complementary and alternative therapies I could find. I am forever grateful to an uncle of mine who suggested the complementary approach which helped me to discover and resolve the numerous unresolved issues in my life which kept surfacing and making me so very ill. Along with a program of healthy eating and exercise geared to my body’s specific needs, this has helped me to be in remission for many years.
    In spite of Eular, I suggest doing your own research to find whatever wellness work resonates with you. Do not overlook the complementary and alternative approaches.

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