Many believe fibromyalgia to be a modern-day ailment but in fact it’s been around for centuries albeit with names like rheumatism, neurasthenia, neuralgia, myelasthenia and fibrositis syndrome, which are all recorded in medical journals dating back as far as the 1800’s.
At present UK statistics show approximately 14,000 new diagnosis are made annually, plus add the cases without a diagnosis! The truth is nobody can be really sure of fibromyalgia prevalence as many patients are also misdiagnosed or the symptoms haven’t been text-book worthy and don’t fit the criteria. What we can be certain of, is that there is an increase in the understanding of the condition despite there is still no specific pathological reason why a person is effected and there is still no cure.
Fibromyalgia affects each individual sufferer in its own way and is diagnosed either as a secondary or primary condition, either way it’s a valid illness and concerning diagnosis in its own right. We now know it’s far from a new disorder and has a long history where the definition, name and content may have changed over the decades, but thanks to progress we are now able to understand a clearer picture of this debilitating disorder that affects so many men, women and children.
The term fibromyalgia originates from the Greek and Latin words: fibro – myo – algos, which translates respectively to fibrous tissues, muscles and pain. However, for those who are unfortunately diagnosed, know it to be much more than this alone and experience a set of symptoms that correlate with each other, otherwise known as a syndrome. With all this new knowledge maybe it’s time for a rename – something more fitting for a condition that is so much more than widespread pain.
EARLY HISTORY OF FIBROMYALGIA
In 1592 a French doctor, Guillaume de Baillou, coined the name “Rheumatism” and references can be found in these early scientific studies and literature mentioning muscular pain and stiffness that had no root cause of an injury. As you can imagine this must have been a major breakthrough as previously this would undoubtedly have been categorised and treated as a mental illness.
From this breakthrough further developments progressed when doctors began to use the term “muscular rheumatism”. This term was referenced to a chronic pain disorder without any known cause or damage to the body – such as fibromyalgia – where the pain is very real and is now medically termed as “idiopathic” pain.
Fast forward to early 1800 a Scottish surgeon, William Balfour was the first to develop the theories to educate other doctors on this type of pain. He had discovered there were tender points around the body that were overly sensitive to pain and it’s these points that became more recently used to diagnose fibromyalgia. Balfour believed that inflammation played a key part in muscular rheumatism type pain and noted the presence of hardening nodules, tender on pressure and with pain radiating out to surrounding areas. Treatment of these were given with compression and friction – possibly early type of myofascial pain treatment?
Moving through the 1880’s a French doctor, Francois Vallieix theorised that the pain could travel from these tender points and affect other areas of the body and the term “neuralgia” was coined. This met well with other theories which were alighting to the problem of pain coming from the actual muscle itself and the nervous system being overactive. We now know this to be what is termed as “central sensitization” and very much a symptom cause of fibromyalgia.
Other names given were “neurasthenia” and myelasthenia” described by neurologist George W.Beard in 1880 to describe widespread pain with fatigue and psychological disturbances to be caused by stress.
As medical science advances into early 1900’s the son of a London boot maker, Sir William Gower, a neurologist presents a lecture and names “fibrositis” describing a condition we now know as fibromyalgia. Fibrositis symptoms included pain, sensitivity to pressure, temperature and movement (medical term for allodynia) and flaring in symptoms following exertion.
The treatment recommended in 1913 was cocaine, rest and confinement to bed but it was soon to be discovered that light exercise was essential for any reduction in pain and recovery. It was during this era that consideration to changes of environment and living conditions were given. Other treatments that were introduced included changes to diet, exercise, massage and painful electrodes in a process called ionization.
It was during World War 2 that doctors gained a deeper understanding of the significance of the emotional and stress connection to pain. Doctors realised that the soldiers were experiencing a great deal of stress, fear and emotional turmoil accompanied by the fibrositis type pain despite no physical injury, inflammation or any signs of degeneration in their muscles or joints. This was the beginning of the disparage of the fibrositis and inflammation theory hence moving the focus away from determining any physical cause and on to a psychological reason behind pain. This influenced a great amount of debate within the science community and concluded with a rheumatology journal emphasising the pain connection linked to trauma and psychological factors.
In 1968, Eugene F.Traut, an American researcher, may have been the first to write about the symptoms that match fibromyalgia when he talked about the characteristics of widespread pain, stiffness, fatigue, digestion problems, headaches, disrupted sleep patterns and mental health issues like anxiety, tender points and an emotional connection. Sounds familiar, doesn’t it?
Eugene also went onto say in his report “The immediate treatment usually includes the administration of analgesics, immobilization and infiltration of the trigger points with procaine (an anaesthetic usually used in dentistry) and adrenocortical steroids”. These treatments we now know are effective for acute pain but completely unsuitable for the treatment of chronic pain.
Significant developments occurred during the 1970’s when an American professor Hugh Smythe, known as the “grandfather of modern fibromyalgia” collaborated with the work from a sleep specialist and a renowned UK rheumatologist Jonas Kellgren. Their work together led to the understanding of fibrositis as a syndrome, meaning a set of symptoms that correlate with each other as chronic pain, morning stiffness, disturbed sleep and fatigue. It’s with these symptoms and with the teaching of examination of tender points became the future diagnostic tool for fibrositis.
Although good progress was being made, none of it revealed any evidence to support the theory of inflammation occurring, relating to the “itis” in fibrositis and in 1976 the name Fibromyalgia was coined and still in use today.
Further studies and research continue to this present day where it’s now confirmed that overlapping symptoms such as irritable bowel syndrome (IBS), tension headaches and migraines, heightened sensitivity and central sensitization, insomnia and other sleep disorders, hyperalgesia, paresthesia, allodynia, myofascial trigger points and subjective swelling are all co-existing symptoms of fibromyalgia.
We still don’t have all the answers and there is no specific treatment that suits all. What we do know now is that there is more understanding toward fibromyalgia as being a valid illness and is far from being imagined or a fad. In more recent years science has become far more sophisticated with brain imaging etc., and gaining a deeper understanding of fibromyalgia, the connection to the nervous system and the brain’s mechanism of processing pain.
There’s so much more to be discovered and the upsurge of interest into the understanding of the mind-body connection is revealing an effective way forward with treatments such as Cognitive Behavior Therapy (CBT), Acceptance Commitment Therapy (ACT) and Mindfulness Based Stress Reduction. Treatment guidelines suggest that along with subject education and information along side a graded exercise program, or at least some form of activity, should be the first line of treatment. EULAR suggestions include yoga (seated yoga), tai-chi, qigong, meditation and breath-work, which are all receiving excellent reviews for managing the symptoms of fibromyalgia.
Unfortunately despite these guidelines most patients are initially prescribed a plethora of pills, none which are UK approved specifically for fibromyalgia and come with a list of side-effects, easily confused as fibro-related symptoms.
Recent studies show that there is a higher prevalence of flare-ups and general symptoms in patients who are overweight or obese, inactive and consume a diet high in refined carbohydrate produce and manufactured sugar products which increases inflammation. The evidence from numerous studies and trials report that the patients who are inactive and retreat to bed to cope with the symptoms, are likely to suffer an increase in pain levels due to a condition called muscular atrophy, heightened pain in the muscles during little exertion. On the other hand, the patients who maintain an active lifestyle, showed to experience a decrease in symptoms and reduced pain levels.
Significant Fibromyalgia Study Advances include:
1984 – The first study published linking the higher fibromyalgia prevalence in those diagnosed with a primary condition rheumatoid arthritis
1985 – The first controlled study of juvenile fibromyalgia was published
1986 – The use of drugs influencing serotonin (anti-depressants) and norepinephrine (nerve pain blockers) were first shown to be effective
1990 – Standardizing research inclusion diagnostic criteria around the world of examining at least 11 – 18 of specific tender points and widespread pain
1992 – The discovery of low growth (HGH) hormone levels in fibromyalgia patients
1993 – Various studies reveal “central sensitization” and HPA axis (stress response) abnormalities
1994 – Studies reveal elevated levels of substance P (pain messenger) in cerebrospinal fluid
1995 – The first brain imaging (SPECT) shows abnormal blood flow patterns in the brain
2000 – A review of evidence coins the term “central sensitization syndromes” of which fibromyalgia is under the umbrella
2007 – Pregabalin becomes the first approved treatment drug in the U.S. followed by Duloxetine and Milnacipran
2010 – Alternative diagnostic criteria replace the tender point examination with questionnaires
To date, studies and research continue around the world which hopefully one day soon will give all the sufferers the answers we are looking for. Meanwhile we must do what we can to look after our well-being, make the right lifestyle choices for overall health, eat a healthy balanced diet and aim to keep active. Most of all we must never define ourselves by our illness and never give up hope.
Thank you for reading.
Author Jok Saunders, Fibromyalgia Health Practitioner and founder of the Fibro Clinic South West