If you were thinking that I was off doing the Christmas shopping… you’d be wrong. If you thought I was preparing Christmas menus…. that would be the biggest joke. No, I haven’t been doing anything Christmassy, and no doubt I’ll pay for it. This week I’ve been struck with a fibromyalgia flare.
I’ve had plenty of time for thinking, although the quality of those thoughts is probably dubious. Brain function tends to go with a fibro flare. One of those moments when I was lying there hoping for death as a relief from pain, I started thinking, why do we call it a flare? My bet is that it was named by a doctor who had no personal knowledge of what it’s like to live through a ‘flare’. Hmm.
This is what I know about flares. Flares were trousers in the 1970’s. I had a purple pair which I was very proud of. There was no such thing as skinny jeans, instead everything was flares.
The other flares I know are the flares you take with you on a boat. Not that I have a boat but I know they are required in this part of the world. They’re like a manual emergency locator beacon way before the days of Global Positioning Systems (GPS). You boat breaks down, so you fire a flare into the sky and hope like anything that someone back on land sees your flare, and has the ability to come and rescue you.
Neither type of flare has anything remotely similar to a fibro flare. Certainly a fibro flare lights up the sky (in some ways) for the sufferer but to call it a flare seems more to me like talking about 19th century swooning women. Let me assure you there has been no swooning here. I might feel like I want to die, and I might be frequently dizzy but
I do not swoon … ever.
Where my thoughts are going is that to call this a flare is way too gentle. It just doesn’t describe the magnitude of pain, fatigue and brain deterioration. It’s time for a better word if we’re going to get noticed by anyone. And not be thought of as a bunch of over-achieving, over-complaining women (remember there’s plenty fo men too).
We don’t call it heart attack a heart flare, do we? Or an asthma attack, an asthma flare? I admit I’ve never had a heart attack, although as a side issue, right now my doctor tells me my heart is surging. As yet he has no idea why. Every so often it just speeds up to tachycardia levels. That’s why I had to hit the smoking on the head once and for all. It’s not pleasant, so with that knowledge and the experience of watching my father having a heart attack a number of years back, I know it’s not at all a nice experience and to call it a flare would simply be an under-statement and ridiculous.
I did once have an asthma attack. It’s not the sort of thing that you usually have only one of, but I’m quite glad I only had one. It was awful, I ended up in hospital for a few days and I wouldn’t even joke about calling it a flare.
What I want to suggest to my fibro friends, and everyone else who is still reading wondering where I’m going to with this, is that we change the name. No more fibro flares. Let’s call it a fibro attack.
Say the word ‘attack’ and you can feel the force of the word coming out of your mouth. Say ‘flare’ and it’s just some namby-pamby nothing word.
We talk of wanting people to understand the viciousness of fibromyalgia, and for that matter other chronic pain illnesses, but we use a nothing word like ‘flare’ to describe it. ‘Flare’ doesn’t describe the pain I’ve been in over the last three days. It’s an ‘attack’ when on one side of me the bedding hurts my skin just because the two are touching, and the other side of me the mattress is too much pressure. I can’t bear for anything to be touching me. [More to come on this.]
I can’t sleep because the pain is too much. My skin feels like it is on fire, I have electrical currents running the length of my spine, my ankles and wrists feel like they are bone rubbing against bone, and my muscles weigh a million tonnes and ache terribly. I am exhausted, and my brain won’t function. I can’t bear the light in the room even though the curtains are pulled, and any noises make me jump in my skin. This is not a flare. This is a vicious attack, and all I can very much hope is that tomorrow when I wake it will have eased.
So if I talk of a fibro attack from here on in, you’ll know what I mean. I suggest you change too. It’s just one of the ways we can get this terrible illness taken seriously.
♦
To finish, I’m wondering about this. Where am I going wrong?
“The aim of the wise is not to secure pleasure, but to avoid pain.”
– Aristotle
Infinite Sadness... or hope? 
Oh my goodness that’s brutal. I’m so sorry you’re in such agony. That “flare” word reminds of when doctors tell you that you’re going to experience a little “discomfort” which really means excruciating pain…xo
You’re so right. That’s why the word should be abolished immediately.
I agree, it’s almost insulting.
I’m sorry you’ve been in so much pain. I hope that these eposodic attacks become less frequent and less painful. I can only recall one time in my life where I experienced ,in a much smaller way, the kind of pain you describe. I was 9 and had contracted rheumatic fever which affected my ankle. My ankle was so painful I couldn’t cover it with a sheet because the pressure and pain it caused was almost unbearable. Fortunately, I was able to find a postion that was fairly comfortable and as long as I didn’t move I could deal with the pain. It’s hard to imagine and fully appreciate what that kind of constant pain, that you can’t avoid, would have on your mental state. I had a number of clients over the years who as a result of injuries had to deal with intractable pain. The price they paid in their personal life was quite high. Many of those who were married saw their marriages deteriorate with time and end in divorce. I guess the only good thing that I can see in your situtaion is that over time the pain does seem to eventually stop. If, I understand it right. In that respect the word “flare” might have at least some descriptive application in the sense that when your attack runs out of fuel the pain lessens and then stops. Is that how it happens? I hope that when these attacks do happen that you’re able to look past the pain knowning that in time, regardless of how slowy it may seem to pass, the pain will vanish allowing you to once again be in control of your life. When you’re in pain I hope you will remember your friends and family who care about you and who hold you in high esteem, bear up under the pain and always come back to us. God Bless!
Unfortunately there doesn’t seem to be any clear evidence of what causes fibro pain, let alone the prognosis of it. I know there are some people who find it eases but others who find it worsens with time. As for me I just take one day at a time. It has enough worries of it’s own. Time will tell. I think that another difficulty is that people with fibro experience pain quite differently to others and that is perhaps the most difficult thing for me at the moment. But hey, I’m alive and I’m happy about that. That makes a big difference. 😀
It’s amazing how words to describe a medical term can be so dismissive. What you are describing is complete agony. So sorry you are going through such a hard time. Take care. 🙂
Thanks Carolyn. 🙂 I think the problem is that the terms are dreamt up by people who have no first-hand knowledge of what it’s like to live with. But I’m pleased to say I’m feeling a little more human today. Log may it last.
Cate, you’re much more than just alive! You’re vibrant, engaging, informative, challenging and to many a candle in the dark. Just breathe and make sure that that candle gets enough oxygen so that it continues to be seen from afar!
Thanks for the reminder John. 😀
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Growing up I’d always hear older people talk about their “arthritis flaring up.” They also used this term associated with various what we now term chronic illnesses or pain. The words “flaring up” in association with a chronic illnesses or pain wasn’t meant to lessen one’s understanding of the pain, it was instead meant to let another person, or many people, know that the individual was suffering and in pain that particular day.
Just thought you’d like to know my perspective growing up around older people!! 🙂
Thanks for that Kathy. I understand that a lot of people use the term, I guess what my thought is that for me ‘flare’ doesn’t give an accurate desciption of just how bad it is for me. But I accept that for some other people it does. 🙂
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