People who don’t have fibromyalgia often don’t understand what it is—yet still offer me unsolicited health advice. Here’s what it’s really like to live with it, writes Coralle Skye
I was only 21 years old when I was diagnosed with fibromyalgia.
I didn’t know what to think of it at the time. On one hand, it was good to know that what I was experiencing had a name. On the other, there was no cure.
Fibromyalgia is a condition where you experience pain all over your body. This pain is unexplainable and can also be unpredictable.
I would describe it as a dull, aching pain that can radiate to any part of my body. It can make my limbs feel heavy and tired. Sometimes, it affects just one part of my body, like my shoulders or my arms. Other times, I feel an ache all over.
There’s no obvious cause of fibromyalgia, but it’s believed that it could be due to abnormal levels of chemicals in the brain which affect how we process pain.1 Fibromyalgia is thought to affect between 0.2-6.6% of the population2 and hits everyone differently: some people have mild to moderate symptoms, while others struggle to get out of bed.
Trying to explain fibromyalgia to someone who hasn’t experienced it can feel like shouting into a void
Trying to explain fibromyalgia to someone who hasn’t experienced it can feel like shouting into a void. Quite often, I feel hugely misunderstood. I’ve been inundated with useless advice, and even when it’s said with good intentions, it still stings.
Here’s a few of my favourite examples:
“Have you tried exercising more?” Yes. It hurts my body, but I still try to exercise when I can.
“Have you tried yoga?” Yes. Even gentle yoga can exhaust my body.
“Have you tried therapy?” Yes. It didn’t cure me of fibromyalgia, though.
And so on. It amazes me that I still get asked these questions. Whatever someone suggests, they can bet that I’ve already tried it. But am I cured? No. Not even close!
Although the conventional treatment options for fibromyalgia are limited — exercise, CBT, and antidepressants are the main suggestions — I’ve leaned into diet, exercise, and supplements. I want to avoid medication if possible.
If I couldn’t handle a gentle yoga class, then how could I cope with more than that?
Exercise can be both a saviour and a curse. In small doses, it can help (depending on who you ask). However, when I overdo it, I really feel it the next day.
To give you an example, I went to a gentle yoga class a few weeks ago. I was the youngest one there by 40 years or more. That shouldn’t matter, but to me it did. Overall, I enjoyed the class. I practice yoga sporadically, but it relaxes me and gives me a sense of control.
But when I woke up the following morning, I felt like I’d lost that sense of control. My whole body ached as though I’d run a marathon the day before. It hurt to move my arms, my legs, and my torso.
I remember feeling gutted because if I couldn’t handle a gentle yoga class, then how could I cope with more than that? Would I ever be able to go for a run, for example? It felt like a big eye-opening moment: maybe I’m stuck like this forever.
I have to believe that one day things could change. It won’t happen overnight, but I’d settle for even the smallest improvement right now
Fibromyalgia is a big part of my life. At this point, it feels like part of my identity. Although, I don’t talk about it too often because I don’t want to sound repetitive; I don’t want to complain every single day.
But there’s only so much I can get on with.
Small, daily tasks exhaust me. When I have to hoover, I let out a long sigh. It’s always been my least favourite task, but now I have a genuine reason to dislike it. Hoovering just one room leaves my arms and body feeling tired. I often have to lie down on the bed for 10 minutes before I can carry on. It’s not “normal”, by any means, but what else can I do?
Even cleaning the hob or doing the washing up leaves my arms aching. At times, it feels like they could simply drop off. It’s not uncommon for me to put off tasks for weeks just because I don’t feel like I have the energy to do it.
I feel incredibly weak and fragile, but I’m only 25. I should feel full of energy, but I don’t. That’s the reality of fibromyalgia. It really can affect anyone, no matter your age or gender.
Despite this, I have to believe that one day things could change. It won’t happen overnight, but I’d settle for even the smallest improvement right now. I keep my fingers crossed that modern medicine will find the answer.
Featured image is an illustration of a person touching the back of their neck, just where it meets the shoulder, as if in pain
Page last updated January 2023
- NHS, Fibromyalgia, National Health Service, 12 October 2022 [online] [accessed 16 January 2023]
- Marques, P., et al., Prevalence of fibromyalgia: literature review update, Revista Brasileira de Reumatologia (English Edition), July-August 2017, vol 57, issue 4, pp 356-363