Fibromyalgia Diagnostic and Management Guidelines – Where do they come from?

In this blog we discuss the most recently published guidelines, the European League Against Rheumatism (EULAR) Fibromyalgia Management Guidelines 2016.

The guidelines are formed from various systematic reviews carried out by a committee of experts from 12 European countries, including the UK, to provide recommendations for the management of fibromyalgia based on the highest level of evidence.

Out of this came a real shift in the way that the management of fibromyalgia has been previously viewed with the emphasis focused on initial treatment as  exercise therapy as the highest level on the recommendation scale.

Other recommendations include that the first line of treatment should include care in the community, patient education in relation to the nature of the condition and psychological based interventions.

This is clearly putting the focus on non-pharmacological strategies as first stage intervention for patients receiving a diagnosis of fibromyalgia. 

The strategies range from graded exercise programmes, pain management, CBT (talk therapy), yoga, tai chi, qigong and simple meditation strategies – all which are a stark difference to previous guidelines.  However, the recommendations include that in non-responsive patients, pharmacological therapies should be added and specifically for those with sleep or mood disorders.

Other prominent guidelines exist, such as the 2012 Canadian Fibromyalgia  Guideline Committee, producing a compilation of evidence during a 20-year period to provide a set of recommendations to submit to the National Fibromyalgia Guideline Advisory Panel.

Based on expert opinion, this guideline for initial treatment is in agreement with EULAR and recommends that there should be a greater patient involvement in respect to education and self-management.  At the top of the recommendation scale, the guideline acknowledges that pharmacological therapy, even at its best, is only modestly effective but that regular physical activity should be considered the cornerstone of treatment.  

To summarise, EULAR recommends that these interventions should be the first line of treatment and have based their review of the evidence to support this guideline as the most effective treatment strategy.

Surprised to read this?

The truth is that it doesn’t quite fit with what actually takes place based on my own experience and from the many stories I get to hear from the fibromyalgia sufferers from all over the world.  Our experiences as the patients, seems like that we are on a different planet.

I think a problem arises here at the beginning of the diagnosis process  –  I don’t want to bring it all back to you, but do you recall that time when you began to notice you’re not feeling like your old self? You know that something’s not quite right, you feel fragile, confused, as well as the fear  and you start to question your sanity.  It can be a real scary time and particularly for those who have been made to feel that’s it’s all in their head!

Seriously, it’s a really stressful time. It all begins with continuous trips to the doctor and let’s face it, that’s a lottery in itself whether the doctor is understanding of fibromyalgia.  Believe me when I tell you that some of the experiences I’ve heard are hair-raising!

In most cases, (unless you were diagnosed over the phone), eventually the referrals begin.  Next it’s the waiting for consultant appointments, then referred for tests – more waiting, then it’s the results of the tests – more waiting! 

It’s at this point you feel as if you’ve entered into a vortex  spinning round and round with all the not knowing and fear evoking uncertainties. It becomes all too consuming and you’re left to just keep spinning with it whilst the overwhelm takes over.  The not knowing why you are feeling so completely wiped, severely fatigued by it all with  pain raging  throughout your body and  it’s no wonder that anxiety levels go through the roof!   

Then the doctor asks “Are you suffering with depression”? or “Would you like to try this for the pain”? and sends you off with a prescription list as long as your arm!

Of course it’s understandable that before you can stop to  take a breath you’re outside the pharmacist and the anticipation of getting some relief is dripping from your pores!  Whether it’s anti-depressants, anti-convulsant, pain killers etc.,   this is the first line of treatment for most of us.  Why?

Well, I don’t think it takes a rocket scientist to work this one out – it certainly didn’t take a panel of EULAR experts that’s for sure!  The answer to the “Why”? is that by this time  our nervous systems have indeed been sent into overdrive –  we are frazzled by it all.

Eventually by the time you receive a diagnosis your sensitivities are through the roof and you may already be suffering the side effects of the first lot of medication. Unsurprisingly treatment and resources vary from region to region and not many people at this stage are given the opportunity to receive any information or education in relation to the condition.

Many people get their diagnosis and are left spinning in that vortex of darkness and tell me if I’m wrong, but I’m certain that if your health professional were to suggest exercise therapy at this point – it’s a boxing ring that comes to mind!

Thankfully, fibromyalgia syndrome is gaining an increased understanding and  continues to be a highly researched and studied condition with a complex pathophysiology.  It affects up to 8% of the total population, plus add the sufferers not yet diagnosed, fibromyalgia is a common condition with a strong female predominance.

It’s understandable that fibromyalgia, let alone any comorbid conditions, can have a humongous impact on both a sufferer’s mental and physical health and finding the right treatment can be like entering into a minefield.

How you find out what works for you is very much down to trial-and-error, bearing in mind that what works for some does not work for all. Going down the medical route, treatment of fibromyalgia is aimed at regulating the central pain pathways to reduce sensitivity and evidence-based trial studies show that this can be obtained via a range of treatment modalities.  However, it has to be said that these studies only offer guidelines and therefore only practiced in the medical field as rule of thumb.

The EULAR guideline also states that many patients may require the addition of pharmacological therapy to help manage the symptoms but they add that it should be noted that medication alone, is unlikely to be of any benefit in the absence of the strategies laid out as the first line of treatment.   

To conclude, the guideline does point out that several medications, although none which are specifically approved for fibromyalgia in the UK,  have shown some efficacy in the management of fibromyalgia. 

The guideline does not recommend opioids or NSAID’s (non-steroidal anti-inflammatory drugs) and as previously mentioned it’s very much down to trial and error, toleration of side effects and how this impacts on quality of life.

Here at the clinic, we do prioritize information and education in relation to fibromyalgia, as well as the all-important support.  We’ve witnessed that these two elements alone are the steppingstones that are the building blocks to give a solid foundation for the next steps, the all important “self-management of fibromyalgia”.

To find out how we can help you please contact us here, thanks for reading and feel free to leave a comment.

Author Jok Saunders, founder of the Fibro Clinic South West

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