Say it slowly: Fibro-my-algia. Fibromyalgia.
Years ago when I first heard of it and got diagnosed I could barely get through the entire word in one go.
But enough people don’t know about it, so after the first several times of explaining what it is, the word starts rolling off your tongue with great ease.
What is it?
It’s a chronic condition characterised by widespread pain and debilitating fatigue. Fibro means fibrous tissues, my refers to the muscles and algia means pain.
In the medical fraternity there’s still much wrangling over fm and issues around it, including whether it’s officially a syndrome or a disorder.
One sufferer I know always complains to me when her doctor calls it a disorder because she finds it diminishes what fibromyalgia does to us. I understand where she’s coming from but honestly, I’m not sure if I’m bothered with what the medical fraternity calls it for now. Whatever they call it, it affects patients enough to alter their entire lives and being (I can attest to that).
Among others these are some of the more impacting symptoms:
● Widespread pain – which may feel like throbbing, stabbing, burning for instance
● Fatigue – which varies with every sufferer. My fatigue is so debilitating that if I could wish away one single symptom, I think I’d choose the fatigue over the pain which I take loads of painkillers for.
● Extreme sensitivity to pain
∙ hyperalgesia – extremely sensitive to pain)
∙ allodynia – feeling pain from something that should not be painful at all like a light tickle (no poking please :) ).
● Sleep disorders
● Cognitive problems (fibro fog)
● Chronic headaches
● Irritable bowel syndrome
● Depression and anxiety (these problems can be really impacting on us as well, our social lives, and emotional wellbeing).
● Not being able to regulate one’s body temperature (I can be so cold even in 32 degrees celcius! or so hot and sweaty in the height of winter!) weird I know!
● Multiple Chemical Sensitivity Syndrome – sensitivities to noise, bright lights, chemicals, certain medications and foods.
There’s still contention over the cause of fibromyalgia but there seems to be a general consensus that its onset is triggered by a traumatic event in the patient’s life like an accident or the development of another illness for instance. These events don’t cause fm but rather awaken an already present, but underlying physiological abnormality that the patient may be predisposed to.
Rheumatologists and neurologists are the specialist doctors who care for us. There’s no one test to diagnose fm. Diagnosis is tricky and usually consists of first ruling out the slew of other conditions that may have the same symptoms via testing etc, and then by doing a physical examination and ‘tender point test.’
From my childhood years up until early twenties I went from doctor to doctor undergoing laborious blood tests of all kinds to rule many illnesses.
“She just needs exercise and vitamins” was a common response from the clueless doctors.
After the familiar, stressful blood tests again doctors in NYC diagnosed me with having a connective tissue disease, but rheumatologists in London disagreed and named the culprit fibromyalgia. There you go, fm diagnosis in its simplest form!
There’s no cure for it and each patient is treated differently.
● Medicines – (pain killers, meds to aid in sleeping, different kinds of antidepressants not just for
depression but to address low levels of certain chemicals in our brains, as well as fix issues with the nerve endings in our brains.)
● Therapies – may include tailored exercise programmes, physiotherapy (damn it! – so exhausting!), physiotherapy and psychotherapy like CBT.
I should tell you that exercise tends to have the opposite effect on many fibromyalgia sufferers. A healthy person might feel energised, but however much we manage to do tends to knock us out and can really cause a bad flare up of symptoms (for me it’s muscle pain, exhaustion and dizziness)
My physio has recommended swimming or water exercise as this will take the pressure off my feet where I tend to have alot of pain problems.
I’ve tried to explain what fibromyalgia is as succinctly as I possibly could. Sorry for blabbing on but I hope this helps all of you who wanted a better understanding of what it is.