R.E.M. said it best, I think- “Everybody hurts. Sometimes. So hold on.”
I don’t think Michael Stipe wrote that song with Autoimmune Diseases in mind, but when I’m in pain I sometimes like to bellow out those few sentences at the top of my lungs just to show I still have somewhat of a sense of humor about this whole situation.
My name is Amanda, and I have Fibromyalgia.
I don’t hurt sometimes. I hurt all of the time, and sometimes holding on is the most difficult part.
When I say I hurt all of the time, I am being 100% serious.
There are 9 pairs of tender points on the body of someone with Fibromyalgia. When pressure is applied to these points, the reaction of this someone with Fibromyalgia will most likely be along the lines of “OUCH! DON’T TOUCH THAT, YOU JERKFACE!” These trigger points are the only way to diagnose Fibromyalgia. There are no blood tests. It doesn’t show up on any x-rays or any sort of scans. There is no way to see or touch this disease. It is an invisible pest that very often goes undiagnosed or misdiagnosed because doctors either don’t know what they’re looking for or they don’t believe it exists (a topic that deserves its own post, and one which I fully intend to explore very soon). That’s because no one really knows what causes Fibromyalgia. It could be genetics. It could be an infection that triggers it. It could be linked to emotional or physical trauma.
The really gnarly thing about Fibromyalgia is that the pain isn’t just isolated to these trigger points. There are so many different kinds of hurts and so many places on the body that can hurt at any given moment. It radiates to every part of you, so if you go into the doctor not knowing what the heck is going on, and they ask you where it hurts, you are most likely to say, “everywhere.”
Now, I’m not running around in life covered in pool-noodle foam because if I’m touched I might unintentonally bite your finger off. When my Fibromyalgia is behaving like an upstanding citizen it feels incredibly similar to the body aches that go along with the flu. My ribs are always pretty tender but I’ve adapted to it, so unless I am actively thinking, “stupid ribs, knock it off” I generally don’t even notice the discomfort anymore.
But Fibromyalgia decides to become a little delinquent sometimes, and that’s when the walking and the sitting and general functioning become difficult.
When you go to see your doctor, the first thing they ask you is to rate your pain on a scale of one to ten. I have always had trouble with this method because how do you really know what’s a ten? How do you know what is the worst pain you have ever felt?
I am always asked to rate my pain when I see my primary care doctor or my Rheumatologist. “On a scale of one to ten how bad does it hurt?”
How can I answer that when I have multiple pains, in multiple places, at multiple pain “levels”? Especially since I don’t know how to really describe a Fibro Flare. I have never quite experienced a pain anything like it. A flare is a unique pain. It’s everywhere, but it’s also incredibly concentrated in certain areas. I have had broken bones. I dislocated a knee when I was thirteen. I have had tons of absolutely awful sprains… And none of these things come close to what a Fibro Flare pain feels like. I don’t have words to describe it, which frustrates the hell out of me because, shoot, I am a writer. I am very rarely without words. Language has not come up with an accurate description of what a Fibromyalgia Flare Up feels like.
I do know that, whatever a ten does feel like, I have never felt it. The highest I have ever gone is an eight.
This is not me putting on a brave face, this is not me downplaying my suffering. This is me comparing the pain of broken bones and dislocated knees to that of a Flare.
I am terrified of having to experience a nine or ten, and what makes it worse is I don’t know if those are coming.
I have no idea what is in store for me. As I write this I feel pretty good, but tomorrow I could bedridden.
I could be useless.
I could find out what a nine feels like.
So what do I do about it?
I did hot yoga, and it was helping immensely. But now I can’t afford it, and I suffer immensely because of it.
I try keep my humor about it. I call my Fibro a “jerkface”, and I joke about it behaving itself.
I take more lavender epsom salt baths than I care to admit.
But mostly I suck it up, put on a brave face and pretend like the soles of my feet don’t feel like they’re walking on a bed of needles.
I am not brave. I am figuring out how to survive with chronic pain.
I am also here for you. YOU. The one that is reading this going “omigosh I didn’t know anyone else had pain like this!”
Everybody hurts. Sometimes.
A few more frequently than the majority.
So hold on. Hold on.