Introduction

I spent an unreasonable amount of time dithering over this particular article. Apologies to my dear editor for missing my deadline (more than once). Here is the dilemma. The logical part of my brain told me to follow the advice of Nike and ‘Just Write It’. I am pretty sure that I could have written a ‘vanilla’ style article that would have been published just fine.

But so what? The doctor part of my brain thought of the many patients that I have seen in clinic with fibromyalgia and I wondered how to help them. Then I wondered about the people who have undiagnosed fibromyalgia and wondered how I could help them. If you are reading this late at night as you try to figure out what might be wrong with you, then I really hope that this article helps.

Let’s start with the elephant in the room. The truth is that many doctors do not find it easy to deal with patients with fibromyalgia. There, I said it publicly. That does not mean that we are a bad lot. We just tend to prefer managing complex conditions with unequivocal diagnostic tests (fractured leg as an example), defined treatment plans (surgery)  and known outcomes (get better, play football again, buy chocolates for the doctor). Fibromyalgia is just not as simple as a broken leg.

In fact, fibromyalgia has been described in the medical textbooks as ‘a complex’ and sometimes ‘controversial’ disorder. Here is the other controversial part. Some physicians do not even believe that fibromyalgia is a real diagnosis. There, I said that too publicly. Now before you send me hate mail, let me explain. Again this does not mean that we are uncaring or don’t believe that you actually ‘hurt all over’ and yes, there are some doctors (albeit a small number) who really enjoy caring for patients with fibromyalgia.

So what’s actually going on here. At least part of the problem can be laid fairly and squarely at the door of medical school education. There, I said that too. A questionnaire survey of 1622 physicians in six European countries, Mexico and South Korea conducted among primary care physicians and specialists found that 53% of physicians reported difficulty diagnosing fibromyalgia, 54% reported their training in fibromyalgia was inadequate, and 32% considered themselves not knowledgeable about fibromyalgia (1). Now that’s a real problem if you are the person with fibromyalgia.

What is Fibromyalgia?

After that ridiculously long preamble, what exactly is fibromyalgia? Hint – anytime you see or hear a long preamble, you can predict that the next sentence might just be ‘I’m not totally sure’. Fibromyalgia is a bit like that. Fibromyalgia is defined as a chronic pain disorder of unknown cause. That is a pretty wishy-washy definition – see the problem?

Practically speaking, it can (and does) affect people in a wide variety of ways.

Common symptoms include:

  • Muscle pain (painful trigger points above and below the waist and on both sides for at least three months)
  • Fatigue (feeling tired on waking up or after minimal activity)
  • Sleep disturbance ( non restorative sleep, restless legs, short sleep cycles)
  • Cognitive disturbance (fibro fog, attention difficulty)
  • Psychiatric symptoms ( depression in 25%) and/or
  • Other symptoms which include night sweats, sexual dysfunction, palpitations etc etc etc.

These symptoms can be very debilitating but I think that we can agree that they could hardly be classified as an exact empirical science. When is it fibromyalgia versus the wear and tear of living a typical western lifestyle? There is a difference but you can see the possible challenge here.

What is the history of fibromyalgia?

Fibromyalgia was first described last century and was referred to a fibrositis. It was subsequently renamed as fibromyalgia (the disease formerly known as fibrositis as celebrity rock stars might say).

Who gets fibromyalgia?

It affects 2-4% of the general population but this is felt to be a underestimation of the true rates. As we have seen, plenty of doctors don’t know enough to diagnose it. It is most commonly seen in women aged 20 -55 years of age. The risk of the disorder increases with age. Rates seem to vary worldwide or maybe diagnosis varies between countries.

You could be forgiven for thinking that rates would be higher in the western world but this is not necessarily the case. As an example, the rates in Bangladesh are double those of the UK. Fibromyalgia is also seen in children.

What causes fibromyalgia?

No one really knows what causes fibromyalgia. As mentioned above, this is why some people doubt that fibromyalgia actually exists. The general consensus (at least for now) is that fibromyalgia is a disorder of pain regulation – this means that there is a fault in the software that controls our experience of pain or the system responsible for generating pain goes wrong. Sometimes the expression ‘multifactorial issue with pain processing’ is used.

To be honest, these are fancy words that don’t mean much at the end of the day. Another fudge to avoid saying that we don’t know.

How is Fibromyalgia diagnosed?

The really frustrating thing about fibromyalgia is the fact that there is no single, simple diagnostic test. Compare this to an x-ray for a fracture. No one wants to have a fracture. But at least, the vast majority of fractures are easily diagnosed (often by the general public) on x-ray.

I think it is fair to say that fractures are possibly more socially acceptable too.

Fibromyalgia is a diagnosis of exclusion and consensus.

By exclusion, we mean that we rule out other disorders that can present in a similar way eg thyroid disease, parathyroid disease, rheumatoid arthritis, myosotis and polymyalgia rheumatica.

By consensus, we mean that a group of experts came up with criteria which patients have to meet in order to qualify for a diagnosis of fibromyalgia.

Essentially, there is a scoring system that is used and if you tick enough boxes you get a diagnosis of fibromyalgia. This is not very satisfying for either the patient or the physician.

Even though fibromyalgia is considered to be a disease of soft tissue, there is no evidence of any inflammation in either the tissues or the blood test.

The American College of Rheumatology 2010 ( modified 2011, 2016, 2017) have devised diagnostic criteria that are commonly used (2). Even the fact that there have so many modifications speaks volumes.

On the plus side, the very fact that a diagnosis of fibromyalgia has been been made has been shown to be useful. Once the diagnosis is made there is a significant reduction in the number of diagnostic tests, referrals to specialists and number of drug prescriptions (3).

Additionally, people with fibromyalgia are noted to be more likely to have certain other conditions such as irritable bowel and migraine. This is referred to as ‘clustering’ in medicine. This makes things even more complex and makes it hard to deconstruct what is really going on.

Is there any research?

There are over 10,000 published papers on the topic of fibromyalgia which includes almost 1000 randomized clinical trials making this is a very active area of research. What we need now are studies that give us actual answers. 

How is Fibromyalgia Treated?

As we don’t understand the underlying cause of fibromyalgia, we don’t have a cure for this condition. Treatment is aimed at managing the symptoms. As symptoms vary between patients and over time, treatment has to be tailored to individual patients and their predominant symptoms at that time. I think it is fair to say that treatment involves a certain amount of trial and error.

Key guidelines on the management of fibromyalgia come from a multidisciplinary group from 12  European countries in 2017 (4).

People with fibromyalgia may end up on a combination of medical therapy, lifestyle interventions and complementary or alternative medicine. For this reason, a multidisciplinary approach involving doctors, physical therapists, pain specialists, rehabilitation specialists, sleep experts and mental health experts may be needed.

At a minimum, it is important to ensure that your provider is not one of those people who would have answered the questionnaire saying that they do not know enough about fibromyalgia.

Treatment of fibromyalgia follows a stepwise approach.

Step 1 Diagnosis

Step 1 in the care of patients with fibromyalgia is actually making the diagnosis.

Step 2 Education

Education is the cornerstone of treatment and involves information on the condition, treatment options, sleep hygiene, exercise, pain management.

The role of education is not just a wishful-thinking type of soft recommendation. It is actually backed by studies. A 2004 systematic review showed that educational interventions significantly helped with pain, sleep, quality of life, self-efficacy and six minute walking. The benefits of educational sessions lasted up to one year (5). Pity that so many insurers, funders and middle management structures limit the face-to-face time that physicians have with their patients.

Web based resources are available and are popular with some patients (6) but I still say that face-to-face education is best.

Step 3 Exercise Grade 

Exercise is the other cornerstone of treatment. A 2008 systematic review found that aerobic exercise training was beneficial in fibromyalgia (7). The meta-analysis collated data from 2276 patients who took part in 34 studies. Specifically benefits were noted for symptoms of pain and global well-being.

Canadian investigators looked at the possibility of resistance training in fibromyalgia ( 8 ). An initial literature search identified 1865 relevant articles involving 219 women. Only five of these studies were considered robust enough for consideration in a meta-analyses.

Let’s look at the maths:

5/1865 = 0.26%.

It is amazing that there are so many publications that get accepted into journals but are really poor quality.

It gets worse. Even the quality of the evidence from the cherry picked papers that made the cut for the meta-analyses was considered as ‘low’. Fast forward to the bottom line: ‘There was low-quality evidence that women with fibromyalgia can safely perform moderate- to high-resistance training’.

Canadian investigators did a full Cochrane review of aquatic training for fibromyalgia (9). They analyzed 16 aquatic exercise training studies which included 881 study subjects. Overall they found that aquatic training was safe but there was only low to moderate quality evidence that aquatic training was beneficial on the key parameters of wellness, fitness and fibromyalgia.

It can be understandably difficult to motivate some patients who complain of ‘hurting all over’ to exercise. Patients need to be told that they may experience a temporary dis-improvement in symptoms and specifically notice a temporary increase in muscle pain. Exercise programs need to be tailored to the individual patient. Overall, low impact aerobic exercise such as walking, biking or swimming are usually recommended.

Step 4 Amitriptyline 

Amitriptyline is considered the drug of choice in the initial management of fibromyalgia.

Randomized controlled trials show that amitriptyline results in clinically relevant improvements in symptoms (meaning that the patents actually notices the difference) in 25-45% of patients as compared to 0-20% of patients receiving placebo (10).

The main downsides of amitriptyline (apart from the fact that it works less often than it does not work) are:

  1. Side effects of dry mouth, constipation, fluid retention, weight gain and brain fog
  2. Decreased efficacy over time meaning that it can stop working as time goes by.

Cyclobenzaprine

This is a chemical compound which has a similar structure to the tricyclic antidepressant, amitriptyline, and can be considered in the initial treatment of fibromyalgia. A 2004 meta-analysis of 5 trials involving 312 patients showed that cyclobenzaprine was significantly better than placebo and similar to amitriptyline (11).

It may be useful in people who report sleep disturbances as a major feature of their condition.

Step 5 Second Line Agents Duloxetine, Milnacipran & Pregabalin 

Second line agents such as duloxetine, milnacipran and pregabalin are considered in the patients who:

  1. Fail to respond to amitriptyline following a reasonable trial ie three months or
  2. Have significant side effects with amitriptyline.

Duloxetine

A 2014 systematic review of 6 randomized trials involving 2249 patients showed that duloxetine was better than placebo for fibromyalgia (12).

The main side effects of duloxetine are dry mouth, headache and nausea.

A one year follow-up study in Japan showed that duloxetine was safe and well tolerated (13).

Duloxetine is sometimes used when fatigue or depression are the predominant symptoms.

Milnacipran

This particular compound may be preferred over other agents in patients who experience significant issues with severe fatigue or pain.

A handful of studies have compared milnacipran to placebo and found that it outperforms placebo and is well tolerated (14).

Pregabalin

Pregabalin is classified as an anticonvulsant and has been shown to be effective in the management of fibromyalgia. A 2009 meta-analysis of 3 randomized trials involving 1890 patients showed that patients were significantly more likely to have a >/= 30% reduction in pain score as opposed to placebo (15).

The main side effects of this drug are headache, nausea and constipation.

Pregabalin is sometimes selected for patients who complain of significant sleep disturbances as part of their syndrome

Head-To-Head Studies

Amitriptyline versus Dolutexine and Minacripran

A 2011 systematic review found that amitriptyine outperformed duloxetine and minacripan in terms of pain, sleep and fatigue (16).

Doctor, can I please have some painkillers?

Have you noticed that even though fibromyalgia is described as a chronic pain condition, analgesics do not feature in the treatment algorithm. Why is this?

It turns out that there is no evidence that analgesics helps with fibromyalgia. This is true for acetaminophen, NSAIDS and opioids (17). Even more worrying, patients with fibromyalgia who receive opioids tend to have worse outcomes than those who do not (18). There is a very real risk of the development of addiction issues with injudicious use of analgesics in fibromyalgia. This is one of the key teaching points once the diagnosis is made.

Given the lack of great treatment options for fibromyalgia, understandably many people look at complementary medical options. Here is the research on some popular complementary medicine options.

Does Tai Chi Work?

A prospective 52 weeks single blind study carried out in between 2012 and 2016 compared tai chai to aerobic exercise in 226 adults ( 19). The study came from investigators in Tufts Medical School, Boston. The study participants were divided into four tai chi exercise protocols or aerobic exercise. For obvious reason it was not possible to blind study participants to the form of exercise. The study participants were divided into the following groups:

  • yang style tai chi once per week for 12 weeks
  • yang style tai chi once per week for 24 weeks
  • yang style tai chi twice per week for 12 weeks
  • yang style tai chi twice per week for 24 weeks or
  • aerobic exercise twice weekly for 24 weeks.

The investigators used a validated and standardized fibromyalgia impact questionnaire score (FIQR). The FIQR score improved in all five treatment groups but the combined tai chi group improved significantly more than in the aerobic exercise group. Additionally, significant improvements in anxiety and coping ability was noted in the tai chi groups as compared to the exercise group.

The beneficial effects were noted even with different tai chi instructors which reassures us that it was most likely due to the tai chi itself as opposed to health benefits from a particularly gifted or empathic trainer.  There was no difference between once weekly to twice weekly tai chi. No serious adverse effects were noted.

The bottom line here is that exercise helps fibromyalgia symptoms. This study suggests that once weekly tai chi could be a good exercise hack for people who don’t love exercise.

Does whole body vibration work?

Whole body vibration involves using a vibrating platform to transfer energy or vibrations to the body. Another interesting study looked at the effect of whole body vibration for fibromyalgia (20). This was a full Cochrane review which was published just last year. Only four studies involving just 150 female adults were identified.

The take home message was that:

  • the quality of the evidence was low,
  • there were few studies,
  • there was bias in the study designs and
  • the available studies did not measure the major outcomes of interest ie pain, stiffness and fatigue.

As my kids would say ‘busted’ or as the Cochrane researchers said ‘prevented meaningful conclusions’.

What about probiotics?

Researchers from Spain searched 14 databases from 2006 to 2016 to see what the literature had to say about this subject ( 21 ). Two studies were identified. Lactobacillus casei reduced anxiety symptoms and bifidobacterium infantis reduced inflammatory biomarkers.

This was interpreted as preliminary data that probiotics are worth studying some more but have not been yet proven as beneficial in this condition.

How about homeopathy?

Homeopathy is a controversial treatment which uses very dilute concentrations of an agent similar to the disease it is supposed to cure. A Cochrane review from Germany looked at the role of homeopathy in the treatment of fibromyalgia (22).The review was published in 2014 and found:

  • 5 trials (4 randomized)
  • 3 observational studies and
  • 10 case reports.

Their meta-analyses led them to conclude that there is a ‘preliminary basis for possible benefits of homeopathy in fibromyalgia’.

Does acupuncture work?

Chinese researchers carried out a Cochrane review of acupuncture for fibromyalgia (23).They initially identified 523 relevant trials but selected only 9 suitable trials for the meta-analyses.

So 9/523 = 1.7%.

Do you get a sense of deja vu here?

There was not enough evidence to prove the efficacy of acupuncture over sham acupuncture for fibromyalgia.

How about Cannabinoids?

Cannaboinoids are being heavily promoted in my local health food shop for everything and anything. How about fibromyalgia?A 2016 Cochrane review from the National Center for Complementary and Integrative Health attempted to answer this really important and trending question – can cannabinoids help fibromyalgia (24)?

They found only 2 studies involving just 72 patients which were considered to be very low quality.

Both studies looked at nabilone which is a synthetic cannabinoid.They found that nabilone was poorly tolerated and it gets even worse. There was no evidence that nabilone has any value in treating fibromyalgia.

Conclusion

I think it is fair to say that fibromyalgia management is not the crowning glory of western medicine.

A database fishing expedition of 240,000 patients with a diagnosis of fibromyalgia found that less than one third of all patients were prescribed medication as recommended by the ACR guidelines (25).

What does that tell us?

Maybe, it is just because doctors are unaware of the treatment  guidelines?

Maybe, it means that the doctors don’t agree with the guidelines?

Maybe, it means the guidelines don’t actually work.

Fortunately, we know that while the majority of people with fibromyalgia continue to have symptoms but still live normal, productive lives. I think that they deserve a better deal than this.

Until, we come up with so a better understanding of fibromyalgia and some effective treatment options, in my humble opinion, the key here is to find a great physician who has a special interest in fibromyalgia and who takes time to talk with you.