Fibromyalgia is, rightfully so, often known as the pain disease. Sufferers are all too familiar with how the searing agony makes life’s simplest tasks into feats of the impossible.
However, it seems to me that for those who don't suffer, the simple statement of ‘being in pain all the time' does little to make them understand. Loved ones who regularly carry around long-term sports injuries look at me like I'm pathetic when I complain about pain, people compare my problems to their own ongoing aches and discomforts.
And I guess, if it were the other way round, I'd probably think I was a major dramatist as well.
Explaining the true pain of Fibromyalgia is a task in itself; imagine it like banging your funny bone, but all over your body! However, that is another explanation for another day.
Instead, this article focuses on highlighting several other symptoms of the condition. In the hope of helping others understand the unrelenting and all-encompassing nature of the disease.
1. Jelly Legs & Floppiness
If I push myself too hard – i.e. the thing I do every day – I often end up in full jelly mode. It started in my legs; when walking it would feel like my knee and hip joints had come loose and my bones were wobbling around inside. I'd take a step and shake dangerously until I took the next one.
Now, it often gets to the point where my whole body goes into flop mode. I physically won’t have to strength to lift myself up off the bed or hold my neck up when I’m sitting.
Honestly, it used to terrify me. Now, I get through by finding the hilarity in my situation like a very drunk person staggering through the city center at 4 am.
2. Muscle Fatigue
Fatigue is another major factor of Fibromyalgia; one that is probably more debilitating than the pain. It comes in two forms: extreme tiredness - pretty self-explanatory - and muscle fatigue.
Healthy people often experience the latter when working out too hard: the burning feeling you get after legs day, the morning after you finish a marathon or long hike. It's like your muscles are screaming at you to rest so they can heal properly – it's a bodily reaction that makes a lot of sense.
It does not make sense, however, when you get it from brushing your hair, walking up stairs or doing up a cardigan. I cannot count the amounts of times I’ve been in the shower, grunting and moaning like the macho men on the weights machines, because I'm willing myself to keep my arms raised until all the shampoo is out of my hair.
3. Bladder Spasms
If you know me, you know what a bladder spasm is – because I won’t let you forget it.
Apparently caused by Fibromyalgia – although who the heck even knows anymore – bladder spasms begin with an excruciating pain that I can only believe is akin to being kicked in the nuts. It feels like you're desperate to pass water but when you go to the toilet, nothing happens - the pain merely increases. They then get worse and worse and worse, until you're on your hands and knees, whinnying like a mother in labor. Just when you begin to think that death is probably a better option, the bladders opens and you can go.
They can last up to 6 hours, in my experience. Yep – living hell.
I'm considering starting a t-shirt company with the slogan ‘hell is a bladder spasm,' so these horrors of this health malfunction can get the exposure they deserve!
4. Brain Fog
Oh, brain fog. The good old symptom that convinces you that you're useless and worthless, almost as well as it convinces everyone else. I've seen attempts to define brain fog as ‘lack of concentration,' ‘lack of focus' or ‘memory loss'- in reality, it's probably a mixture of all three.
It’s usually present in varying degrees, but here are some examples of the very worst attacks:
- Talking to someone, losing focus and forgetting what they're saying.
- Forgetting what you're doing halfway through a task.
- Having no idea what you did last month/last year/when you were a child.
- Going somewhere to do something, forgetting to do it.
- Inability to recall bank details, phone numbers, date of births on cue.
- Have no recollection of whether you did something or forgot to do it.
- Inability to find the answers to questions in your brain.
- Seriously, it just turns into a big bag of mush…
I often find myself standing/sitting somewhere and being like ‘what the heck is going on right now?’
This one is pretty self-explanatory: if you have a Fibro flare up then you better be ready for headaches, dizziness, sensitivity to light and screens etc.
In fact, you might as well just go curl up in a dark room now because it’s so likely it’s going to happen.
6. Throwing Up
Have you ever said, or heard uttered, the phrase ‘I'm in so much pain I could be sick.' Well, unless you're a Spoonie or suffered a serious injury, it's likely you were being hyperbolic.
However, for us fibro-warriors, our digestive systems play such a significant role in the disease that it's common to experience nausea, vomiting and IBS symptoms on a regular basis.
It's hard to describe what it's like throwing up from pain. It's not like ‘ow pain, oh now I'm sick.' It manifests itself more gradually; as your body reacts to the pain it's like you're filled with poison or chemicals – maybe adrenaline, I'm not sure. Once this feeling becomes overwhelming, you end up with you head hanging over some form of bowl. Delightful, huh?
The best part if when you're so floppy, you can't hold yourself up but still need to find a way to aim the vomit.
Alone, Fibromyalgia pain is bad; it's unrelenting and acute in a way that injuries can never really be. However, it’s what happens to your body when you are in long-term agony that really makes this condition so underrated and misunderstood. It’s not merely a pain disease; it’s an entire-body-struggling-to-function disease.
Consider this next time you cast off a sufferer as over-dramatic.