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The name, Fibromyalgia, comes from fibro-, fibres, myo-, muscles, and algos-, pain. The name is so long patients usually call it 'fibro'. Fibromyalgia can happen to anyone, but it happens more often to women than to men. It is thought to affect 1% of the population in the UK.
People with fibro have widespread pain throughout their body. They also have fatigue (which is a deep tiredness that makes it hard to move.) Many people have migraines, feel very stiff (so it's difficult to get going in the mornings,) find it hard to stay asleep. Many have problems with thinking, remembering and finding the right word (these last three are known as 'fibro fog' because it's like thinking through fog.)
At the moment there isn't a proper test for fibro. Doctors diagnose it by testing to make sure nothing else is causing the pain. After this, the doctor uses a 'tender point test.' Fibro patients get pain in certain joints, so once the doctor knows nothing else is causing the pain, then the tender point test can tell if it is likely to be fibro. Often getting diagnosed with fibro can take many years because of all the tests that have to be done.
Early in the year I often see a lot of comments from people who are either starting out on a new fitness regime or energetic hobby, or at the other end of the scale, who are going down with/getting over the
flu or a nasty winter illness, and I've so often though - THAT'S how I'm feeling right now & I'm not doing either of those things! So, this has prompted me to write this, as I think it's the perfect time & way to explain what living with Fibromyalgia actually feels like and for ordinary people to relate.
Think of when you start a new exercise regime, or go to the gym for the first time after a break or perhaps you've set out on a new project of digging over the garden or allotment? It's great & will probably do you the world of good in the long run, but the next morning you wake up & your whole body aches & you've stiffened right up? A person with Fibromyalgia wakes up every single day feeling like this, and unlike the average person, the feeling doesn't ease after a day or so. It's for life, no matter what you do.
You know when you're really ill with the flu & you are barely able to move, every part of your body aches & you feel so weak, wobbly, headachey, unable to think straight or concentrate on anything for long. Maybe you have a stomach upset. All you want to do is sleep, but often the pain & other symptoms keep you awake, so there is no break from it. This is basically what a flare up of Fibromyalgia feels like.
Think about the flu example again. When you start to recover from flu, you start to feel better, but you don't feel quite right. Even light activity leaves you very drained very quickly. You have no stamina and you are easily tired. If you try to push through it, you can often feel weak and dizzy & may well start
feeling flu-ey again. Even standing too long can trigger it. Add to this the "after exertion" aches and
pains I described in "Basic Fibro pain" and there you have a normal day in my life, or that of anyone
On top of this, there are the other more specific pains that kick in, often for no apparent reason. Pains that can feel like a severe sprain, a sudden pain in your fingers like you'd shut them in a door, a cramp so bad that you collapse. They can happen at any time, anywhere & last seconds, minutes, hours or even days. I'm not writing this for sympathy, I'm just hoping for understanding. Imagine trying to live a
normal life, carrying out every day activities whilst feeling this way. It's hard, and often mentally, physically & emotionally exhausting. I hope this helps even one person get an idea of what Fibromyalgia actually feels like and how it impacts on us from day to day.
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