According to the NHS, fibromyalgia most often develops in those aged between 30 and 50i, often a result of a traumatic event such as bereavement or injury. Whilst this rings true to a certain extent for me (I was 37 at diagnosis and had endured an extremely stressful few years just prior to that), I’ve never felt that my health was good as it could have been since my childhood in the 1980s.
Reading around the topic of childhood fibromyalgia, I’ve come to the conclusion that my cards had been marked since I was a kid and I wonder if my experience is a common one.
I’ve found it helpful to think about this because I sometimes blame myself for my diagnosis, believing that lifestyle choices made as an adult contributed to the development of the illness. But untangling my fibromyalgia story from childhood has helped me to feel more accepting of the condition as I see that the signs of what was to come later had actually been there for decades.
So here are some of the symptoms I experienced as a child and young person and which are, nowadays, listed as symptoms of paediatric fibromyalgiaii.
As a young child, aged around 5 or 6, I regularly had a burning sensation in my arms and legs, sometimes so severe that I would be bedridden. I don’t know how many times I was taken to the GP with this but what I do know is that my parents were always told that the pains were “just growing pains” and that I would have to deal with it.
Later on, in my teens, I used to experience excruciating pains in my legs. I vividly recall being told by my GP that if I did more exercise, my legs wouldn’t hurt so much. At the time, I felt that this was unfair, as I had a 40 minute walk each way to and from school and would often go out on all day walks / cycle rides at the weekend. But, being just a teenager, I wouldn’t have dared to challenge the doctor, so things were just left as they were and I struggled on.
I’ve always been a very poor sleeper for as long as I can remember. Even as a teenager when most of my peers would regularly sleep for 10 hours a night, I would often wake up in the dead of night and be awake for ages. And that was if I could get to sleep at all. I recall many a night where I would sit downstairs with my dad (also a lifelong poor sleeper) reading until the early hours, having been unable to fall asleep in bed.
During childhood, I was sent to the hospital several times for blood tests to have my iron levels checked because I so often felt utterly exhausted, run down and used to pick up every infection going. The blood tests always came back normal but there was never any further investigation as to why I felt like I did.
My first job post graduation was in a city a 45 minute drive from home (I moved back with my parents after University). As one of a group of 13 recent graduates on a training programme and with most of the rest of the workforce being under the age of 30, there was a buoyant social scene both on week nights and at weekends. Alas not for me. The commute and the 9-5 really took it out of me and it was all I could do to drive home at the end of the day, eat, shower and head for bed as I was so exhausted. Weekends were spent recovering from the working week. My colleagues thought I was weird and antisocial and I soon became an outcast. The stress of all this lead to rapid weight loss and painful skin issues, so after 3 months, I resigned.
I’ve been an anxious person as long as I can recall. Even as far back as primary school, I would sleep very little on a Sunday night before going back to school as I was anxious about it. I never had any specific reason to feel this way but if there was something to be anxious about, then I would be. At University I was prescribed beta-blockers to get me through exam periods and would take over-the-counter sleeping pills to calm me down at nights as well.
- Irritable Bowel Syndrome (IBS) – diagnosed in my late teens
- Headaches – often triggered by exposure to bright light
- Frequent swollen neck glands and throat infections
It’s only now I understand that what was a seemingly a random collection of symptoms over a long period of time did actually have a level of coherence, culminating in a diagnosis of fibromyalgia many years later.
Whilst the stress I experienced in my 30s tipped the balance towards a diagnosis of fibromyalgia, it seems that some level of predisposition had always been there, lurking in the background. These days I’m now much less inclined to berate myself for being “abnormal” or beat myself up over having fibromyalgia as I look back over my own history and realise that in all likelihood, there was nothing I could have done differently which might have prevented the development of fibromyalgia.
In 2021, I wonder if a child or young person presenting with symptoms such as those above would have a diagnosis of fibromyalgia considered given that much more is known about the condition than was the case in the 1980s? I’d like to think so, as it might save them from decades of soul searching, wondering why they’re so different from their peers.
Above all, though, I’m hoping that this article might help at least some others to “join the dots” of their own fibromyalgia picture from the past and make more sense of their current condition. I’d love to hear if any of this resonates with any readers of this blog.