So it struck me whilst talking to a new fibro friend that people whom are new to this illness know nothing of whats to come even the simple things so here goes here is my guide to what delights I have experienced so far on my journey.
My journey started with pregnancy and for others it can be triggered by something as simple as a bump to the head and for others it takes a car accident... no one knows the start but you do begin to feel pain and aches and you try to ignore it dismiss it as nothing a simple sprain, strain... but they feeling of pain doesn't go away and so you go to a dr and after a battery of tests if you're lucky you're finally given the diagnosis of Fibromyalgia.
But an its a stonka... thats all they do ... there's no heres what to expect, no here's how to feel on the bad days... so its down to you to find groups or pages such as this and find out as much information a you can.
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So what to expect? well Pain and plenty of it.... there wont be any respite from it either, there will be drugs that will help with it of course but no drug will ever ever take away the pain. The Anxiety and depression assocaiton of America describes Fibromyalgia as:
Fibromyalgia is a medical condition that impairs the joints and causes chronic pain. Though the symptoms can feel similar to arthritis, it does not cause inflammation at the joints or muscles.
Fibromyalgia may cause people to experience sleep problems, headaches, and temperature sensitivity, as well as memory difficulties and numbness or tingling in arms and legs.
Research suggests that people with fibromyalgia are hypersensitive to stimuli that are not painful to others, perhaps due to a reduced blood flow to the portion of the brain that regulates pain. Fibromyalgia appears to run in families, but scientists haven’t pinpointed a specific gene.
Often misunderstood, fibromyalgia affects 3 to 6 million Americans — as many as one in 50. Women are significantly more likely to be diagnosed with the disorder, and most are diagnosed during middle age.
People with rheumatoid arthritis, lupus, and spinal arthritis are also more likely to develop fibromyalgia.
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Next up there are things called fibro-fogs: they aren't fun nor are they pretty but what they are... are scary their technical terminology is defined as: Fibro fog – also known as fibromyalgia fog and brain fog – is a term commonly used for the cognitive difficulties that can occur with fibromyalgia. The first few that you will have you'll begin to think you're loosing it or even worse having some kind of breakdown but in reality its the short term memory taking a time out on you for anything from a moment to a minute (thats the nicest way to describe it) I have had bad fogs some that put me in hospital because I've fallen down the stairs while blacking out.... so please guys when you do start to experience these sit down when to begin with until you get used to the warning signs.
How others have described it "“My patients tell me that fibro fog feels like they’ve been taking cold medicine constantly,” says Rob Keenan, MD, MPH, assistant professor of rheumatology at Duke University School of Medicine. “They have difficulty concentrating, finding words, holding conversations, feeling alert and remembering things.”
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short term memory loss
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misplacing objects
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becoming easily distracted
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forgetting plans
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difficulty carrying on conversations
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inability to remember new information
Although cognitive difficulties have sometimes been thought of as “all in a patient’s head,” a 2015 study in Arthritis Care and Research found that fibro fog is a real issue. In a study of 60 individuals – 30 with fibromyalgia and 30 without fibromyalgia – researchers found various impairments of attention and memory in fibromyalgia patients when compared with healthy controls. What remains unclear is what is causing the cognitive challenges.
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Depression.... its a horrid beast and yes it rears its ugly head just as soon as most of us start to realise that this illness is incurable and will rob us of almost every aspect of our lives we hold near and dear.
It will take away the very things you enjoy doing and then force you to re-think every think and every way in which you do them.
It WILL without a doubt affect those we love and those we don't realise love us. People you once thought of as friends will now fade into the background and become sick of hearing just how sick we are, how much we have to bail out on plans made so far in advance and generally what you find is the only real ones hang around to see if you're really ok.
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Odd isn't it that when you do become ill people have the hardest time believing you when they can't actually see anything wrong, it makes it so that even family and employers become skeptical.
The thing is that whilst Fibro itself has not been a new illness its still a relatively newly heard of one and so unless you know of it or of someone with it it can sound 'fake'... for example and I use this only as an example for those of us sufferers in our mid-lives whom are lucky enough to still have parents alive this illness can seem almost made up to them. They are of the generation who lived through a war and rationing and the worst things they ever heard of was perhaps shingles or nowadays cancer.
Its not nice when people close to us don't believe in our illness just because it cant be seen but if you look and you really knew the person before this illness then the signs ARE there.....
Just like with cancer....there are no visible signs of the illness, yes there are of the treatment but not the illnesses, but if someone told you they were fighting cancer there's not one part of you that would doubt them its the humanity in all of us.
So why is it that so so many of our nearest and dearest can ignore the fact that we are so very very ill to the point were it can take our lives (we can fight back and not let it just like I did once earlier this year) why can family just ignore just how sick we are, when we can sometimes barely move a finger and others just about cope with moving around our homes. Doesn't seem fair does it? is it their coping method or just a cold heart or simply that they don't understand anything about an illness that they cant see but that can cause so much crippling torture.
I tend to try and guage a littleabout their reasons from their reactions to some simple questions such as would you ignore someone with cancer? and did you know Morgan Freeman has this illness and has to have so many breaks in filming which is why now his parts are either voice overs or bit parts..... if the Morgan Freeman part peaks interest then you can lead them to maybe your favorite fibro site or some form of letter you may have already written however if they brush all of this off then its best to perhaps wait a while.
Anyway I digress.......
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Anxiety, Oh dear lord the mother of all bitches .......?what are they thinking? what you think of them thinking of you?.... what you look like? are you good enough?... is your mask on properly?... will it fool everyone it needs to today? can you survive today? are you in your comfort zone? sooo many things to set off an anxiety attack and yet we take the pills we wear the lucky charms and perform whatever rituals it is we have become accustomed to and we muster the strength to do what we have to do to fool those closest and the rest of the world onto thinking that everything is 'just peachy'... except its not is it? it hasn't been for as long as you can now remember and wether that's because the fogs or the you've just been wearing it so long now you've forgotten the real you either way any little thing can actually set off an anxiety attack if you are having a bad day / flare up, and no amount of "i'm fine's" is going to help you.
Anxiety is NOTHING to be ashamed of in fact admitting that you are suffering from it will allow you to get the treatment you need to try and be yourself a little more again.
It is one of the few symptoms of Fibro that CAN be controlled to a degree. Whilst I DO acknowledge that anxiety attacks are nothing nice and can, to whomever is suffering from one, almost feel like they are trapped... cant breathe...suffocating....etc there are so many good breathing techniques to be able to relax during an attack and also some drugs to control them even occurring.
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