Fibromyalgia and me
I thought I would use my first blog post to share my ‘journey’ with fibromyalgia, with which I was diagnosed in November 2018 (aged 40), despite having had symptoms at least as far back as my early 20s. After speaking to participants in my study, I became aware of how ‘typical’ my experiences were in the context of fibromyalgia:
As a child I suffered from frequent ear infections and also had a lot of stomach issues.
I experienced a lot of muscle and joint pain during my time at high school, and was prescribed exercises for my ‘tight muscles’ by a physiotherapist.
I worked in Germany for a year (aged 20 - 21), and during that time I was diagnosed with ‘chronic myofascial pain’.
I was diagnosed with pernicious anaemia (an autoimmune disorder) when I was 21, which caused me to experience overwhelming fatigue. Despite subsequent treatment with B12 injections, I continued to struggle with low energy and lack of stamina. I also have hypothryoidism (which seems to be very common in people with fibromyalgia), although currently not to a level for which treatment is deemed necessary.
A new relationship and car crash in Autumn 2004 resulted in a whiplash injury and a period of illness, including glandular fever.
From 2007 to 2009 I worked full time in residential care (brain injury / autism). During this time I suffered from sickness (vomiting) every two months and lost. a lot of weight. This only improved when I started to work part time.
In 2008 I first presented my doctor with a list of symptoms of fibromyalgia which I was experiencing. The list was given back to me without even being read, and my symptoms were dismissed.
Despite working part time, I continued to struggle with the symptoms of fibromyalgia, especially sleep. I would wake up every night for several hours with horrendous restless legs and pain throughout my body.
In 2018, I finally saw a doctor who was willing to recognise that I had fibromyalgia, and it was put on my medical records as an offical diagnosis. I was prescribed ‘amitryptyline’, which hugely improved my sleep issues.
My stomach issues have improved through following a ‘FODMAP’ free diet. For me, fructose is the biggest culprit and can, literally, zap my energy!
I used to feel hungry all the time and regularly experienced symptoms of low blood sugar. Since starting ADHD medication (Elvanse), I no longer experience this and am better able to regulate my eating habits.
For the past few years I have experienced fibromyalgia as constantly sore and achy joints and muscles (made worse by damp weather), and flare ups of flu-like symptoms and ‘malaise’. My main triggers are stress and emotions.