How to Write About Fibromyalgia
Fibromyalgia was first discovered in 1990. It’s the same age as me.
I wasn’t officially diagnosed until early last year, but, looking back, both I and those that know me can see that I’ve had symptoms on and off for a long, long time.
Nobody really knows what causes fibromyalgia. That’s why it’s still not very well-known in the medical community.
In fact, there are even some doctors that still don’t know of its existence, or think that it’s a psychological condition.
It isn’t. It’s closely related to conditions like ME/CFS (many patients with one also have the other), and arthritis.
It’s thought that it’s related to the nerves being hyper sensitive, but nobody knows for sure.
Diagnosis involves ruling out other conditions such a coeliac and arthritis.
Many doctors also use an outdated and unreliable system of poking a series of 18 of ‘pressure points’.
However, this isn’t always accurate since pain can vary from day-to-day.
The day I was diagnosed the pain was moderate (although I apparently still yelped while being poked, and it still hurt half an hour later).
If the rheumatologist had seen me two weeks later, I would’ve been crying in agony because the pain was so bad before anyone had even touched me.
Many doctors are reluctant to diagnose young people with such a debilitating disease. I was tested three times for coeliac because they wanted to find something treatable wrong with me.
Pain with no physical cause
Pain can vary in how strong it is and what type it is.
For me, it varies from my joints feeling like they’re made of led and can’t move, to a sharp, searing pain that courses through my body, to an aching similar to what you get when you’ve really pushed yourself at the gym.
Fatigue isn’t the same as being tired. It’s like tiredness on steroids. No matter how much sleep or rest you get, you still feel exhausted. It’s relentless.
Brain fog, sometimes called ‘fibro fog’
This is, by far, the worst symptom for me. It’s like your brain is a car driving through thick, dense fog.
You know that what you need is just through the fog, but you can’t find it. It won’t show itself to you.
And even if you keep driving, the fog just grows thicker and makes it even harder for you to find what you want.
Triggers for brain fog vary from person to person, but they can include certain foods (dairy and gluten are big ones) and stress.
IBS and other digestive issues
People with fibromyalgia often have an angry digestive system. IBS, indigestion, heartburn, food intolerances, the constant need to pee…the list goes on.
It should be no surprise that if you’re in constant pain, you get headaches, too.
Fibromyalgia sufferers often need to drink more than the average person because their mouth so dry. This doesn’t help with the needing to pee all the time…
Women with fibromyalgia will often find that they suffer from particularly painful periods and may also have endometriosis.
Fibromyalgia suffers will often find that their skin is dry, itchy, or otherwise irritable.
Ingrown hairs and dry skin don’t go well together…
I don’t know why this is a thing, but it is.
Eyesight problems can be tied to the headaches, or they can involve blurred vision when your eyes get tired. This makes reading even short blocks of text difficult.
Dizziness and lightheadedness
I can’t speak for other fibro sufferers, but I know when I’ve pushed myself too far I start to go dizzy and lightheaded and feel like I’m going to faint. That’s my body telling me that I need to pull back and slow down.
Depression and anxiety
It’s no surprise when your body doesn’t behave as it should that someone is left feeling depressed and anxious.
Inability to regulate body temperature
This can lead to someone feeling hot all the time, cold all the time, or fluctuating between the two.
It also means that the changes between seasons can be particularly difficult because a person’s body is unsure of how to react.
For me, I’m cold all the fucking time. If the temperature is below twenty, I’ll usually have at least three layers on. I don’t feel the heat until it’s at least 23 degrees.
My mum is the opposite—she doesn’t feel the cold. I know she’s starting to come down with something if she does.
The list goes on…
There are lots, lots more symptoms than just those listed here. You can find some more on this doctor’s checklist for fibromyalgia. This is one of the most comprehensive lists of symptoms I’ve found so it’s worth checking out.
Different people suffer from different levels of severity. One day they can be fine, another they can struggle to get out of bed. It’s unpredictable at best and uncontrollable at worst.
The best analogy I’ve heard is that it’s like having a nasty case of the flu and a raging hangover at the same time.
Many things can trigger what’s often called a ‘fibro flare-up’. This is when symptoms get really, really bad. Sufferers often can’t get out of bed or carry out their daily tasks. Lightheadedness and brain fog are, for me, signs that I’m going to have a flare up if I don’t rest.
Triggers vary from person to person, but some of the most common are:
- Changes in temperature
- Not enough sleep
- Too much sleep
- Overexertion (mental or physical)
There’s no cure for fibromyalgia. It’s one of those things that patients have to live with. There are things that can be done to minimise or temporarily alleviate the pain, though:
- Epilepsy medication
- Cognitive behavioural therapy (CBT)
- Time management/knowing your limits
Treatment that works for one person may not work for another, so there’s a lot of trial and error involved.
To deal with fibromyalgia in a healthy way, you need a lot of self-awareness.
You need to be able to listen to your body and mind and be willing to take a step back when it tells you no.
This is super hard, but the best way to cope.
Like this post? You may also want to check out the how to write about mental health series: