6 myths about fibromyalgia

May 12th is Fibromyalgia Awareness Day, so I thought I’d share some of the myths and facts about this chronic, invisible illness.

Myth 1: Fibromyalgia is rare

Fact: Fibromyalgia is one of the most common pain conditions in the UK and according to Fibromyalgia Action UK, around 1 in 20 people in the UK, that’s at least 2 million people, have fibromyalgia. Before fibromyalgia appeared in my life, I had no idea what is was. I’d never even heard of it before.

Myth 2: Fibromyalgia only affects women

Fact: Fibromyalgia undeniably affects more women than men (women are approximately 7 times more likely than men to have a diagnosis), but it still affects men.

Myth 3: Fibromyalgia only affects people over 50

Fact: My fibromyalgia probably started developing when I was a teenager, but didn’t show it’s true potential to cause havoc in my life, until I reached my 30s.

Fibromyalgia can appear at any age, although it typically develops between the ages of 30 and 50. I often get told I’m ‘too young to be dealing with all these symptoms’, which is always well-intended (and let’s face it, we all like to hear we’re ‘too young’ for something, as we age 😉). But we have to stop perceiving arthritic and musculoskeletal conditions as health issues which are only encountered by older generations. Anyone at any age, can develop fibromyalgia, although when I say anyone, there is a pattern of certain personality types who are more susceptible to getting fibro. According to Professor Jose Antonio da Silva, speaking at ENFA Conference in Malta today, we are:

Ethically driven

It’s not the first time I’ve heard there is a correlation between personality and fibromyalgia and I can’t deny, I do relate to all of the above…

Myth 4: There’s no hope or treatment for you, if you have a diagnosis of fibromyalgia

Fact: When living with a debilitating chronic illness, with widespread pain, flu-like fatigue and a host of other symptoms, it can be easy to feel hopeless and it can trigger anxiety and depression.

It’s a life-changing diagnosis and it takes time to accept and adjust.

However, as much as no-one wants a diagnosis of fibromyalgia, receiving a diagnosis after months (usually years) of symptoms, appointments, tests and worry, it is reassuring to get a diagnosis, because it validates the symptoms we encounter.

Our symptoms are real.

There are also a range of treatments and tools available which can help and improve quality of life. So yes, there is hope.

Myth 5: Fibromyalgia symptoms are mild

Fact: Fibromyalgia is a spectrum disorder, which means it affects everyone with a diagnosis, in different ways. So yes, sometimes symptoms for some people, are mild. For others, symptoms are so severe, they prevent them from working at all. My symptoms have an impact everyday, but with careful planning and pacing, I can work and do most of the things I want. Just not usually all in the same day. Or in the same week.

And when I say, I can do most of the things I want, that’s also a result of me changing my outlook. A lot of the things I used to love doing, I no longer desire to do now (or certainly not as often), because of the impact those activities have on my health.

When I do have enough energy to do the things I enjoy outside of work, that doesn’t mean I’m symptom-free. There are always some symptoms lurking in the background, ready to jump into the foreground, usually (and often) without warning. But I get by, put a smile on my face and make the most of it. Except when it’s too much. Then I’m like a bear in hibernation.

Myth 6: Fibromyalgia just causes pain

Fact: Not even close.

‘I wish I just lived with pain everyday for the rest of my life’ said no-one ever.

But I’m sure a lot of people living with fibromyalgia, wish they didn’t have to live with all the other symptoms that co-exist with the pain we experience. The pain alone is more than enough to deal with at times.

Fibromyalgia is a disorder that just keeps on giving.

Pain and fatigue are the biggest challenges for me, although I also deal with a whole host of other symptoms including numbness, stiffness, Raynaud’s, brain fog, IBS, edema, food intolerances, tinnitus, clumsiness, heightened sensitivities to temperature, pressure, humidity, light, sound, chemicals…like I said, it’s the disorder that just keeps on giving. And dealing with all of that can at times, impact on my mental health.

Fibromyalgia is an overwhelming and socially isolating illness, so it’s important to pace our activity, plan regular downtime and integrate gentle exercise into our routine, which can help improve symptoms (or make them worse, if we try to do too much!).

But don’t forget to plan social activities and things you enjoy doing too (I love to travel), because we are more than our illness. ❤️

What myths about fibromyalgia have you encountered?

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