Fibromyalgia, a chronic pain syndrome/disease that attacks multiple areas of the body 24 hours a day leaving the sufferer begging for a break in the pain. The side effects from Fibro is like an endless list of further suffering.
And best of all – there is no cure.
Beyond that I can only tell you what I know. There are plenty of
online sites that will give you the medical rundown and all the fancy names and I have read most of them.
But instead of writing one of those pages I will try and give you a sufferers version of what Fibromyalgia is actually like to live with.
But before I start, it is important to understand (if you aren’t a sufferer, or if you are a recently diagnosed sufferer looking for info) is that no two people suffer in the same way. Everyone has their own journey and everyone suffers different degrees of pain and side effects.
Fibro basically leaves the sufferer in a degree of pain 24 hours a day.
There is no cure and no one knows what the hell causes it.
If you have been recently diagnosed you no doubt had to go through months and maybe years of tests and other treatments before you were told it was Fibromyalgia. That is because its the diagnosis that can only be made once everything else has been ruled out.
It is said that most people suddenly suffer after suffering from some kind of life trauma. I don’t know about that. Personally I didn’t, I just started suffering. I thought I had the flu but the flu symptoms never really came out but the pain stayed.
Describing the pain, I find, is impossible. It hurts, it bloody hurts. Some days are better than others but the pain is always there. It’s there when I wake and it’s still there when I try to go to sleep. The degrees of pain can vary.
Have you ever had a nasty toothache and had to wait a week to get it sorted out? Remember how the pain never went and started to drive you insane, possibly to the point of wanting to pull that tooth out on your own. Well “up” that pain and put it all over your body – for the rest of your life.
On a good day the pain feels like a severe ache that has been there for a week and you have learnt to cope with it. It’s in the background but you know it’s there. It slowly digs away at you until you feel like you are going mad. Try to twist or turn or pick something up without thinking about it and boy that pain is really there.
On a moderate day the pain is enough to make you want to cry come the end of the day. The day itself is a struggle and every movement reminds you it’s there. You are never comfy, you can’t get comfy and it feels like your body is fighting you. Carrying out a normal day is a fight. Everything you would usually do becomes a challenge – if not impossible.
I sometimes sit with a huge urge to rip out of my body to escape the pain. Your body feels alien to you. You don’t feel like you and you just want a rest bite from the pain.
Then you have the severe days. Nothing is possible. You are in a kind of pain you can’t imagine and it is attacking the whole of your body. For me these days usually come in the form of what we refer to as “flare ups”. Some sufferers can be in a constant state of this type of pain and can be bed ridden.
It’s hell. A living hell.
Fibromyalgia, is cruel. It’s invisible. Its easy to forget someone is suffering and sufferers often feel guilty for affecting those around them.
As I’ve mentioned, it isn’t just the pain. The side effects are horrid in their own right.
Headaches, migraines, pins and needles, restless legs, brain fog, IBS, unable to sleep, nightmares, memory problems and cramps are a small number that can come into play.
And did I say there is no known cure at this time.
We are all on medication. From a personal point of view I have yet to find anything that truly helps. Pain killers can sometimes take the edge off but not for long and not to any real benefit. By the time you find a cocktail of drugs that you end up sticking to you feel like a guinea pig who has been tested on.
Some have said they have felt improvements from drugs, natural remedies and treatments. Diet is also said to play a part. The healthier the better you may feel.
The long and the short of it is this is a bizarre syndrome that attacks and attacks you physically and mentally until you just want to scream. Add real life and this becomes the fight of your life.
But you aren’t alone. There are loads of us out there. I hadn’t even heard of Fibro until I was diagnosed. Starting up this site and my Facebook community you start to realise just how many sufferers are out there. We are stronger together. Keep fighting.