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If I Could Talk to Fibromyalgia...

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I am struggling to accept that fibromyalgia is running my life. On my “good days” I can forget for awhile. I can be social and friendly. I can do things like clean the kitchen, put laundry away, vacuum the stairs, or write an article. On those days I feel like just maybe I can lead a “normal” life. And then it comes back. And it’s always worse because I had a day with low pain and wasn’t expecting such agony. Some days the pain is excruciating. Some days it’s bearable. But every day, it’s there.

I decided to give my illness a personality and write it a letter. If I could talk to fibromyalgia, this is what I would say…

Dear Fibromyalgia,

Nearly four years ago, you invaded my body. You started with letting the nasty kremlars inside my thighs. “Kremlars” are what I can only describe as tiny invisible (imaginary) creatures that crawl around inside me under my skin. Only someone who lives with kremlars will understand. But you, you who came here uninvited brought too many friends.

Over the years you came and went, making your presence more and more obvious until you moved in and settled here without an invitation. Now my body is full of kremlars. And they have developed teeth and claws. They gnaw on my nerves and my muscles causing electric-like stabbing pain and spasms.

naked woman bent over in pain

Fibromyalgia, you seem to have no rhyme or reason for how you choose a body to invade. All I know is you show up uninvited, out of the blue, and take over a body as if it was always yours. I spend so much time and energy trying to take care of you that I have nothing left for anything else. You are draining and exhausting and just plain mean.

At first I thought the solution would be simple: take some pills and make you shut up. But you ignored those pills. You sent whispers to my brain telling it to ignore the medication. So I tried other medications. Lots of them. And you just kept sending out your little minions to make the medicine ineffective.

Everyone is a doctor now thanks to the internet. Once I started telling people you moved in, the ideas of how to get you out started flowing. First there was acupuncture, then chiropractor, massage therapist, osteotherapy, and lidocaine injections. You didn’t like any of those, but you fought back. Your minions, the nasty kremlars, continued to protect your hold on my body. Next came cutting out gluten, stretching, not stretching, exercising but not too much and not the wrong kind, the TENS machine, apple cider vinegar, magnesium,  omega 3, homeopathic, naturopathic, supplements, heat, ice… you get the picture.

The internet is constantly telling me ways I can get rid of you – giving me false hope that clipping a clothes pin to my ear will relieve the pain you cause. You, however, have the perfect master plan. You know just how to trick my brain. You send the kremlars to my nerves and send messages to my brain claiming I am in danger. My brain reacts by alerting my body’s stress response. Cortisol and adrenaline are released and blood rushes to my muscles getting me ready to fight or run. You activate my sympathetic nervous system, wreaking havoc on my other systems. I get hot, flushed, sweaty, then freezing. I get hives and rashes, but you also trick me into thinking I have a rash when I don’t so I scratch and scratch. And each scratch sends signals to my brain saying I have more pain and I’m in more danger.

And another thing…

It’s bad enough that you attack me physically. Do you really have to attack my cognitive functions like speech and memory? Standing at the front of a classroom in front of students having no memory of what I was about to say is incredibly frustrating. Forgetting I made plans with someone is embarrassing.

There are days when I think I have a good plan. Like those times I had an IV infusion of lidocaine and ketamine. You are too clever for that. You completely ignored the invasion of anesthesia and kept ordering the kremlars to cause pain. Or those days when you let the kremlars go to sleep and I forget you live in my body, I do all the things that need doing. And I do all the things I am often not able to do. This leads to pushing myself too far, and you must either get bored or my moving around disturbs you because you wake up those kremlars and send them out with a vengeance.

purple person keeled over in pain

You, fibromyalgia, have caused a pain loop in my central nervous system that makes everything hurt all the time. And quite frankly, I think you’re a jerk!

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Images by Kira McCarthy

Originally published: March 24, 2017
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