Consumed

I would literally rather have a finger chopped off (I have actually lost the top part of a finger right above the last knuckle so I do know what that feels like, I’m not just saying this in ignorance), maybe even two fingers, than deal with this cruel pain.

It starts in the back of my head and the base of my spine, and then the two painful areas spread out, reaching towards each other up and down my back, like it’s encasing me in a spiky shell made out of pure, unadulterated pain, then up, up, over my ear and it curls so evilly around my eyes. It is so immense. So sickening. So beautifully and radiant and piercing that I am unable to do anything but stay still and be consumed. I feel like a sponge being wrung out over and over again. There is no way to adequately explain the waves of pain cresting and rolling over my body.

I am misery. I am made out of twisting, tearing, crushing pain. Lightening is running through my bones, doing whatever it wants unchecked.

But this is right now. Tomorrow might be better, tomorrow is hopeful and waiting for me, if I wait for it.

I’ve written before about how tough it is, how draining, to wait without any end in sight. I often have to sit with a severity and kind of pain that consumes me, there is no other option. I do not have access to the correct or even halfway correct painkillers and muscle relaxers, Lyrica is a joke. I wish I hadn’t started taking it because it will not let me stop. I ran out of Aleve…. it was easier on my stomach than the mostly useless Diclofenac I have been prescribed. I can’t seem to take hydoxyzine without having worsening panic attacks or some awful, foggy, un-refreshing naps all day long, and propanolol was causing me disrupted sleep, worsening and more frequent panic, and severe brain fog, so I was told to discontinue using it. I could not write or organize my thoughts on either one, and my speech was declining as quickly as my short term memory. I do not think that Lyrica is helpful with my speech either, what with it’s toxicity to new brain synapses (post to come about that research later, when I can think). When you’re in a ton of pain and your supposedly super smart neurologist(s) tell you to start taking Gabapentin, then Gralise (the once a day version of Gabapentin) and then finally they land on Lyrica, you just go with it, right?

NO. No no no.

If only I had known that my doctors had no idea what was wrong with me at that time, that they were guessing in the dark, and that they were only getting slightly closer by prescribing Lyrica. They were also condemning me to a long period of taking pills that are highly dangerous to a fetus. I wish someone had explained that, because 22 year old me still knew she wanted kids pretty soon, illness or no illness.

For now, all I can do is tough it out, sit here with a level of pain that is worse than having a missing finger, even with all the non-narcotic pills and supplements I do have at my disposal.

How can that possibly be?

Because when a normal person chops off their finger in a freak accident, they have inherent opioids and opiate receptors inside the body, and a healthy body will send out lots of pain-dampening chemicals to keep the pain contained. I didn’t cry when the top of my finger got bitten through, but I did lose a lot of blood and go into shock eventually. Sometimes, even though I’m not losing blood or crying, I go into shock from the amount of pain that my chronic condition causes. For people in chronic pain, all the possible opioids are being flooded into the system all the time, almost completely in vain. Unfortunately, on top of this normal cycle of central sensitization that happens in many kinds of chronic pain, in fibromyalgia patients there are not enough opiate receptors to get any real relief, even if that constant flood of internal opiates was enough to help us with the level of whole-body pain we experience.

In the face of a spine full of invisible daggers, my body’s helpful ability to make opiates is next-to-useless. Unfortunately, chronic pain sufferers never get the natural rush of relief that comes along with acute pain.

It also means pain pills do not work as effectively for people with fibromyalgia. Some of the folks who need them most can’t even make efficient use of painkillers inside the body. Completely unfair, right? I think so too!

For now, I am waiting. I am not calling my doctor’s office frantically, although I may at some point today, and I am not sobbing hysterically even though I would like to completely melt down. I know it can actually be worse than this, as much as that seems impossible right now, because I have been in even more pain than this and sat with it.

It took years to get from “I will never accept that someone can just feel like this most of the time,” to “Oh well, what am I still able to do despite the pain, in between the waves?” It’s not an easy journey, but I can say that I am happy with the progress I have made, slow as it is at times. Like all progress, I go back and forth, not every day is a good day no matter how much positivity I pump into my life.

To be perfectly honest, I do want relief today, I can’t take this, and narcotics would absolutely help me do the many many things I need to get done but which will have to wait until tomorrow, at the very least, because there is no relief for me any time in the near future. Fortunately, I am still able to write, albeit slowly, and for that I am thankful. I know that it is a slippery slope with the painkillers that do help me, and I am 25, and I can sit with this pain again and again, and I can wait. It doesn’t not mean it is fair, or that I am happy with the situation, just that I know my will is stronger than this horrible pain. I will still be here when it recedes a bit, and that is all that matters right now. Half of me is trying to be calm and logical, but the other half wants to scream and cry and use up precious energy on fear.

I might feel like I’m being consumed by my pain at the moment, but in truth, I am pushing through the fire, and I will emerge mostly fine on the other side when this pain is done with me.

Here’s hoping that happens really soon.

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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

One response to “Consumed”

  1. abodyofhope says :

    I’m sorry you are hurting.
    Even someone who knows Pain intimately, who lives with him, who has her own name for him, still doesn’t know the greeting when someone else is entertaining him at such an intimate level as well :/
    I’m sorry you are hurting.
    I mean it.
    I used to tell people that if I cut my leg off inch by inch with a butter knife, it still would not hurt as much. I meant that too.
    That reminds me of you describing your finger being bitten off and how the pain couldn’t compare whatsoever. You’re right! I never thought of that. How people with acute pain get the endorphin’s and adrenaline rush with the injury.
    Every injury I had before my RSD/CRPS onset never hurt much at all. I thought it was because I was tough, but it’s only because of how the body works to protect us from pain.
    With chronic pain, those good chemicals are gone and the opposite happens. Pain is a disease that attacks us. Healthy people have never felt anything like it. If they had they couldn’t have psychologically have grasped it because the knowledge they would heal soon– smooths over the unbearable pain. It is short lived and they know that. The same reason I’ve had nerve blocks or painful procedures- the pain ends- I know it. Chronic pain does not. Or we don’t know when it will.
    I hope yours does. I hope mine does.
    In the same way the body isn’t producing “good chemicals” to combat pain, we also aren’t responding to the opioids like you are desperately hoping will ease your symptoms. It’s like a trick that isn’t funny. I’e heard the same about Lyrica. That it doesn’t help the symptoms much but you cannot really get off of it either- like you said. And I’ve also heard the side effects are terrible. I hate that for you. Another rotten trick.
    Thank you for helping myself and others understand better what you go through with a Fibromyalgia flare. I hope they can better control it in the future somehow. I really appreciate your blog. So grateful we’ve found one another ❤
    I'm sorry you are hurting.
    I hope you see relief very soon.

    Liked by 1 person

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