World Fibromyalgia Awareness Day

12th May 2020

Loud voices have it…
Lady Gaga
Sinead O’Connor

Brilliant minds have it….
Florence Nightingale
Morgan Freeman

Great bodies have it…
Jo Guest
Carrie Ann Inaba

More importantly…friends and family have it, which is why we need to know more about it, because knowledge improves understanding, and a better understood person is happier, healthier and ultimately in less pain.

Let’s speak up, share stories and shed light on Fibromyalgia this May.

Why is there a special day for ‘fibro’?

The late Tom Hennessy, founder of R.E.S.C.I.N.D Inc. (how awesome is this for an acronym - Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases), nominated a significant day to raise international awareness for a group of highly complex and chronically misunderstood diseases. The diseases currently included under this banner include:

Fibromyalgia (FM)
Myalgic Encephalomyelitis (ME)
Chronic Fatigue Syndrome (CFS)
Gulf War Syndrome (GWS)
Multiple Chemical Sensitivity (MCS)

The day is on May the 12th because that is Florence Nightingale’s birthday. It is believed Florence Nightingale contracted an FMS/ME type illness at age 35 and she was bedridden for decades. Though battling with the debilitating condition did not seem to stop her founding the world’s first school of nursing. Remarkable.

So what is fibromyalgia?

Clinically it may be defined as: widespread pain and tenderness, often accompanied by fatigue, memory problems and sleep disturbances.

Your friend might describe it like this:

‘A nightmare of agony and sleeplessness – I hate the days and dread the night time’

‘It’s like you make a to-do list with ten items on it. Today you can do four, if you try and do any more than that then tomorrow you can only do two’

‘The spinning wheel of pain, sadness, insomnia, stress, brain fog, tummy upset, fatigue – just keeps going round and I can’t get off long enough to catch my breath’

It is little wonder that on top of this daily physical struggle people with FM also suffer with major depression and anxiety.

What really causes it?

It would be easy to think, and for a long while the medical fraternity definitely thought, that fibromyalgia was caused by problems with muscles and joints. However, research confirms that it is actually a problem with the brain and nervous system. Specifically brain scans show several key ‘pain matrix’ areas of the brain are affected: Anterior Cingulate Cortex; Prefrontal Cortex; Insula; Posterior Cingulate Cortex and the Brain Stem. When so many important areas of the brain are affected it changes the way these areas work together as networks, it’s like the: Default Mode Network; Executive Control Network; Pain Network; Salience Network and Somato-Sensory brain networks shout out ‘PAIN!’ in unison. All this together causes a phenomenon known as ‘central or explosive sensitisation’ and everything just hurts. v

This long list of big brain words is neatly explained by Hank Green from SciShow in ‘Real pain and explosive brains: Fibromyalgia’

How is it diagnosed?

Eventual diagnosis can feel like it has been one of exclusion, that is, a doctor or specialist may eliminate everything else it could be before arriving at a diagnosis of fibromyalgia. This can be a frustrating process for the individual enduring the symptoms of fibromyalgia as well as the seemingly never ending ‘run around’ to find out what it is.

It is challenging for the health professionals too because there is no one specific blood test, scan, X-ray or physical examination that can be used to diagnose the condition. Even though you can clearly see the individual is in, at times severe, chronic pain.

The brain ‘explosion’ now can be seen with detailed functional brain scans known as QEEG scans. These brain scans identify how the brain regions affected, and their networks, are disrupted and create the raging flare-ups so familiar to a person with fibro.

What treatments are around and what works?

Chronic pain, like fibromyalgia, is an immeasurably complex experience. It is the unique experience of the individual, so the way it shows itself can take on an equally personal expression. Some may feel so exhausted and weak they can only cosy into a little nook on the couch for weeks on end, others may feel so agitated and stressed they can’t stop even though they know if they don’t stop it might feel like it hurts more tomorrow.

Treatment plans need to first understand and appreciate the whole person, and the individuals brain. Most recent treatment guidelines for fibromyalgia should include 5 key points:

Patient education
A team-based approach
Physical exercise including Meditative Movement Therapies (eg. Tai-Chi, Yoga)
Psychological support
Emphasis on non-drug treatments

Non-drug treatments for fibromyalgia can now include tDCS (or Trans-Cranial Direct Current Stimulation). tDCS uses a small and safe direct current applied to the outside of the head to gently stimulate the brain. tDCS is probably best known as a safe and drug-free treatment for depression after studies conducted by The Black Dog Institute in 2012, but research also shows that tDCS can be helpful for people with Fibromyalgia as well. For more information about tDCS see: https://www.perthbraincentre.com.au/services/tdcs

Development of person-centred, multifaceted, and evidence based treatment plans, in an open and informed way, may even see the inclusion of particular tracks of music that exert a positive influence on the connectivity of brain networks in the ‘pain matrix’.

Listen here:

To find a professional practice where your voice is listened to and your story is understood can be the welcome ‘exit on the round-about’ a fibro sufferer may have been searching for, for years. When this clinic also commences your assessment with state of the art brain scans (QEEG) and provides tailored non-drug brain based treatments (like tDCS), delivered by a dedicated and knowledgeable team, it may feel like a world of options has opened.

Clinicians are available to start a conversation with you, about your unique experience with ‘fibro’ today. Inspired, always, by Florence Nightingale to ‘let each person tell the truth from [their] own experience’.

Let’s speak up, share stories and shed light on Fibromyalgia this May.