This is the first in a series of posts about fibromyalgia, a condition that I have lived with for 20+ years. As in the song Do Re Mi, let's start at the very beginning.
Fibromyalgia is described in the Oxford English dictionary as: a rheumatic condition characterised by muscular or musculoskeletal pain with stiffness and localised tenderness at specific points on the body. As someone diagnosed with this horrendous condition, this is in the most basic terms, and there is over 1000 other associated elements, that is blamed on the fibromyalgia diagnosis.
Merriam-Webster.com's definition gives a more enlarged definition: a chronic disorder characterised by widespread pain, tenderness, and stiffness of muscles and associated connective tissue structures that is typically accompanied by fatigue, headache, and sleep disturbances. Even this definition, sounds like pop a couple of pills, have a little rest and you will be better. How wrong that is.
So let's see how the good old Wikipedia describes it: is a medical condition characterised by chronic widespread pain and a heightened pain response to pressure, temperature, weather and touch. Other symptoms include tiredness to a degree that normal activities are affected, sleep problems such as non restorative sleep and restlessness, and cognitive dysfunctions. Some people report restless legs syndrome, bowel or bladder problems, numbness and tingling and sensitivity to noise, lights or temperature. Patients with fibromyalgia are more likely to suffer from depression, anxiety and post-traumatic stress disorder.
There is no treatment or cure and is a case of treating each element, and deciding if the medication and/or treatment outweighs the side effects. Some medications can make people sick or gain huge amounts of weight that makes a daily life impossible. People have to learn a new "normal" to cope with the condition and that may be slowing down and using the Spoons theory (we will cover Spoons Theory another time).
Fibromyalgia affects 2-4% of the population and more ladies than men are diagnosed with this condition. Fibromyalgia has been around for decades with little research into finding a cure or treatments, in its current form, it was redefined in 1990, which was updated in 2011, but there has always been controversy over how the diagnosis is reached and the way treatments are trialled and it depends sometimes of the strength of the sufferer, as I wouldn't wish this condition on anyone, and worry that the reason for the Long-Covid name has come about from this negativity about being given a long-term label, but would be beneficial as the two conditions are so similar and may result in helping millions who have been suffering for decades.
The term fibromyalgia comes from New Latin: fibro - meaning "fibrous tissues", and Greek words: myo - "muscle" and algos - "pain" - which the term literally means muscle and fibrous connective tissue pain. As mentioned before it's so much more than this, but this is when your GP starts to look a little deeper and refers to physiotherapy, x-rays, blood tests and rheumatology. It can take years for a diagnosis as other conditions, that can be treated needs to be ruled out, and may be the reason that Long Covid being a new name for an old condition is that it hasn't been around for years yet or the full checks not having been done, to be given such a diagnosis.
The history of this condition goes back to the 19th century, but the word fibromyalgia was not used until 1976. Other names included fibrositis and psychogenic rheumatism, which were applied historically to symptoms resembling those of fibromyalgia, much like Long Covid in more recent times. It was more regularly used from 1981, following a scientific publication, which was the first clinical controlled study of fibromyalgia's characteristics and its then interconnections of other conditions, that more treatments were suggested in 1986. But this was soon shot down in 1987, in the US Journal Of American Medical Association, where it was called a controversial condition. The tender points that often still used for diagnosis by GP and rheumatologists for fibromyalgia is now seen as not strictly correct for diagnosis as these were used for clinical studies in the 80s, to confirm the tender points theory (another story for another day).
Over the coming months we will look at fibromyalgia and its fun associated conditions and where you can find help and support. I am not a medical expert and you should always seek professional advice for these matters, but raising awareness of such a nasty condition, I will always do from the point of view of a sufferer and from information openly available online or in person interviews.