(Taken from www.fmauk.org/history)
Living with fibromyalgia is not easy! Any chronic health condition has its challenges of course, but fibromyalgia can be more challenging than most. To explain why, let me explain a bit about the condition and its history.
Fibromyalgia is a chronic widespread pain condition that takes your independence, liberty and much more. It also impacts your sleep so that you are less able to deal with the pain. Add to this fibrofog where you feel like you could forget your own name and you have a starting point of this condition. Lack of treatments, working treatments being taken away, disbelief from friends’ family and health professionals means that this condition is challenging. We would not wish it on anyone.
The condition is thought to affect between 2.9% and 4.7% of the population but with the NHS not recording diagnosis accurately these figures are up for dispute. However, we are now in a period of greater awareness than even 5 or 10 years ago.
Fibromyalgia can be heard referred to as a new disease or a fad diagnosis. It used to have other names like fibrositis or muscular rheumatism and has been thought to have affected some notable people from history like Florence Nightingale (1820-1910) or the artist Frida Kahlo (1907 – 1954).
In 1592 rheumatism was coined by Guilliame de Baillou to cover musculoskeletal pain that did not originate from an injury, to later the term muscular rheumatism that included conditions like fibromyalgia that did not cause deformity there has been a push to define it better.
William Balfour later described in around 1815, tender points that would eventually be used to first classify and diagnose fibromyalgia and then later, Francois Valleix used neuralgia to describe what he thought was referred pain from these tender points. Stress was also thought to be a factor, with neurologist George Miller Beard citing widespread pain, fatigue and psychological disturbance.
The 1900s introduced new terminology like fibrositis, muscle hardening, and myogeloses, but Sir William Gowers definition of fibrositis stuck. The symptoms that Gowers put forward will ring true with fibromyalgia patients today. i.e. spontaneous pain, sensitivity to pressure, sleep disturbances, fatigue, cold sensitivity and aggravation of symptoms by muscle over-use.
In the first decade of the 1900s cocaine injections were suggested as a treatment. The name reflected the thoughts of the time i.e. muscle and inflammation and tender/trigger point patterns appeared as charts through the 1930s. Anaesthetic was still the suggested treatment for fibrositis which was thought to be the most common form of severe chronic rheumatism according to a 1936 paper.
Soldiers from World War 2 were thought to be more likely to have fibrositis which brought more attention and a new name of “psychogenic rheumatism” was coined as they did not show signs of physical degeneration or inflammation, and stress and depression appeared to play a part.
Arguments on what fibromyalgia was continued, with psychological and physical origins and treatment being debated but acceptance grew with textbooks stating that there can no longer be any doubt of its existence. Eugene F. Traut’s paper in 1968 added female predominance as well as headaches, and a mind body connection to Gowers list.
Up to this point Myofascial Pain syndrome (MPS) was part of the fibromyalgia conversation, but in 1972 Hugh A Smythe’s textbook chapter on fibrositis set the scene for the future,identifying it as a widespread condition and separating it from MPS. He introduced the concept of dysfunction within sleep as well as stating that trauma, emotional distress and non-restorative sleep can heighten symptoms. Later he helped refine the definition of tender points and suggested their use in diagnosis. In 1976 the name fibromyalgia was adopted to represent the new understanding about the condition.
Fibromyalgia – What’s in a name?
Research was being carried out, but inflammation could not be found so the name fibrositis was losing its shine. Our understanding at this point suggested that pain in the muscles and connective tissues were the focus so fibro – my – algia was chosen as the new name.
There were still a lot of unanswered questions. Our current understanding began in the last two decades of the 20th century with a seminal study by Muhammed Yunnus which confirmed pain, fatigue and poor sleep were more common in people with fibromyalgia and that they tended to have a greater number of tender points. Parathesia, subjective swelling and comorbid conditions such as IBS, tension headaches and migraines were also common.
The rest of the 80s saw juvenile fibromyalgia, higher incidence with arthritis and the role that serotonin and norepinephrine may play in targeting future treatments. However, with the 90s the medical profession starting to formulate treatments. The ACR criteria for the in 1990 led by Wolfe is the epoch that we use for future diagnostic criteria. They outlined chronic widespread pain, as well as 11 of 18 specific tender points, as a baseline research criteria. This with the Fibro Impact Questionnaire helped shape future research studies.
Central Sensitisation Syndrome (CSS), Substance P and SPECT brain imaging followed as well as prevalence studies to estimate how many people were suffering. We also found evidence of genetic predisposition in a study that allowed us at the end of the century to explain why it ran in families.
2000’s
The last 20 years have seen more work in CSS, treatment guidelines for fibromyalgia being defined by the American Pain society and several treatments being approved by the FDA. These and additional meds like gabapentin and amitriptyline are prescribed off label but have provided relief to many. 2010 and 2016 brought further revisions to the ACR criteria including the move away from the tender points. These criteria have been validated against their earlier versions but are less arbitrary than relying on tender points. Research has continued to shore up previous findings, but other theories and research are looking at things such as inflammation of the fascia, extra nerves on blood vessels, small fibre neuropathy, and immune system abnormalities.
These require more investigation and we are also seeing work being done to establish subgroups of fibromyalgia.
It is hard to sum up over 150 years plus of research and patients undergoing treatment for an often-controversial condition. We are seeing changes in treatment regimens where budgets reduce access, policy and study is limiting access to opioids for some although the advice is not to go cold turkey, we are seeing immediate cessation without any replacement being advocated.
When a fibromyalgia patient sees a GP or rheumatologist, they are looking for help and hope that things will improve. Unfortunately, without this hope and with unrealistic expectations they often leave their health professional feeling dispirited and continuing to be in chronic pain. Family and friends can be casualties of this condition as they do not understand. Employers may think you are skiving and the DWP is sure you are unless you can provide proof otherwise.
Fibromyalgia Action UK is a charity that has been supporting people with this condition since 1994. We have a network of support groups around the UK run by volunteers, we work with health professionals, employers and others to further the plight of people with fibromyalgia. When we attend conferences like the BSR in Birmingham this year, we hear from rheumatologists under pressure from budgets. However, their patients with fibro are looking for help and some rheumatologists without any resources to help like pain clinics, CBT or activity programmes can only give the diagnosis and then shuffle the patient back to their GP. These HCPs are also disheartened that they do not have the resources to help us.
The patient has waited months for this appointment to see a specialist and their expectations have not been managed; they are crushed by being back where they started. Add to this the health care professionals that dispute the condition or are too busy for another fibro patient in their clinic when they have MSK conditions to deal with that they can actually help and the patient is destroyed, without hope and doubting their own diagnosis.
Our current method of diagnosis for fibromyalgia as mentioned above, requires a doctor to consider the presentation of the patient, and their history:
- Has the patient had widespread (4/5 regions) pain without an explanation for over 3 months?
- Have they suffered from lack of sleep or are unrefreshed / fatigued?
- Do they have issues with memory or coordination?
- Do they have any one of several other co-morbid conditions like IBS, migraines, cramps or depression?
The ACR 2016 criteria (www.fmauk.org/acr2016) and as per the NHS choices website indicates there is a move away from tender point tests to these new criteria. At present we have no blood test to help with the process but there is research ongoing.
I wanted to end with what health care professionals can do to help a fibromyalgia patient. First, please believe them and listen to them. Talk about increasing activity and not exercise, with Tai chi and chair-based yoga being options. Encourage them to write a short journal that lists pain score, how they are during the day and any questions they have for the next appointment, so they do not forget. Pharmacists, please do regular medication checks as fibro patients can have multiple medications that change over time. Fibromyalgia patients will normally have a protracted journey to find meds that help with their symptoms. Information for yourselves or your patients on fibromyalgia, can be sourced from FMA UK.
Des Quinn, FMA UK Chair
