Today as I was on my way from the bedroom to the living room with my stash of topical treatments for pain, I realized I must have a pretty decent collection by now, not even counting the twenty or so others I have thrown out. Each one goes with a different kind of pain that it helps to relieve, sometimes not enough at all, sometimes just enough to not scream. Sometimes I hurt so bad I forget I have them completely, and when that happens, they definitely don’t do me any good!
Do you have a small pharmacy at your disposal too? I better not be the only one who buys supplement after supplement that will supposedly help with pain (I was too embarrassed to take that picture, it would have scared you guys. So many bottles!!!), and I hope I’m not the only one who scours Amazon for the newest rubs, creams, and pain relieving ointments. Sometimes I hit gold, and I will make a list of my favorite topical and oral over the counter treatments very soon. The little gold and silver pen is a crystal powered “acupen”, not quite like the really nice $150 ones out there, I only spent $16 on this one, but it gets the job done on hands, feet, arms, parts of my neck, ears, jaw. It just blocks the pain signals temporarily by sending out a harmless electric pulse, it’s not magic, but hey, every bit counts when relief is slow in coming. Bonus: it doesn’t ever need batteries replaced!
I have told my boyfriend a million times that distraction is half the game. it’s why I talk non-stop sometimes when I’m hurting my worst, even though it gives me a horrid sore throat and I start to feel flu-sick after a few minutes of chatting. Even inflicting more pain is better than focusing on the pain. If that makes any sense at all. It probably does not, lol.
Sometimes I can’t seem to tune into real life, or break Pain’s hold on me. On those days I sometimes get depressed, anxious, and a little desperate. I feel outside of myself and “other” somehow, like I have nothing in common with the people around me, or like I shouldn’t be around people at all. Now I (try to) channel that bad energy into looking for at-home treatments to try or new ways of thinking about my illness that make it feel a little less like the massive burden it is. Every single little trick helps!
BTW, the most effective combo for my pain so far is Topricin, and my specially-mixed-for-me prescription of Ketamine 10% / Keprofen 10%/ Tetracaine 4%. But I actually do use every single one of the things pictures here on an almost daily basis, because I can only put the creams on so many times each day so I rotate through all my options frequently.
If anyone has anything to recommend, I would love to hear about it! I can’t handle anything that is too much like IcyHot, because that burnsburnsBURNS. But lighter cooling/warming products are usually okay.
Hope everyone is having a relatively pain free day. ❤
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.
❤ ❤ ❤
Love that image.
Sadly, we start to use this sort of language against ourselves after a time… It has to stop! Shame and guilt need to be taken off the shoulders of the chronically ill and those in chronic pain, there is enough to deal with besides having to “prove our pain” to anyone.
No one chooses to suffer constantly. No one. We all want to be happy, healthy, contributing, but you never know what someone’s suffering amounts to unless you have to live under the same burdens and restrictions.
September is Chronic Pain Awareness Month
I hear it echoed over and over again by my friends, my self, and chronic illness writers across the web. The hardest part is getting those around you to understand what chronic pain takes away, not only from your physical capabilities, but cognitive abilities, focus, social functions and so many other things, too many to list. What the general public and even caretakers and close friends may not know is that chronic pain changes everything, from taking a shower to driving to thinking clearly in a meeting to not cutting a major artery in a surgery. Some days, I feel lucky to have done the dishes even if I did nothing else that day. Sometimes just surviving is overwhelming. If I can do nothing else, on my days when I am resigned to a chair or the couch, I want to help spread the word about the real bravery of the men and women who wake up each and every morning in unending, unforgiving pain. In addition, I desire so much to ease the transition for newly diagnosed patients with chronic illness through education, advocacy, and compassion. As a community of chronic pain patients one of the most pressing issues is to get a realistic, non-romanticized version out to the public of what it is like to be ill and not be able to rely on your body, or even you brain, depending on the day.
I am the same person I was before my illnesses took hold, but I am also different. I speak differently, and I speak about different things. I spend most of my day distracted by pain, and looking for a distraction from it. I am sure that the people around me no longer believe all the crazy things that are happening within my body can possibly be happening to one person, all in one month, and that is part of the stigma of chronic illness. I too didn’t understand what it meant to look fine on the outside but deal with so many problems within your body that even basic work was impossible. Five years ago, I would have pointed at someone like me and said “oh, she’s exaggerating, it can’t really be that much worse than my _____ (insert: back pain, flu, headaches, anxiety, arthritis, whiplash injury) and I worked though all of those things” but I was wrong. I was so terribly wrong that I guess life had to prove it to me in a pretty brutal way. How does that saying go? Judge not, less ye be judged?
I figured, especially because I was one of the judgmental voices, the harsh and unforgiving “them” who could never understand chronic illness, and now I understand all too well, maybe I should be one of the ones who helps shed some light on the many unseen and unspoken hurdles facing patients with a myriad of rare, invisible, incurable, and terminal illnesses. I’m honestly guilty of still trying to hold myself to standards that I cannot achieve with my illness in full force like it currently is. Hopefully in the midst of promoting acceptance and support from caregivers, relatives, friends, significant others, healthcare professionals, and the media, I can also sway some fellow spoonies to take it a little easier on themselves too. If you are dealing with daily pain that will not relent, try to gently remind yourself that you won’t gain any ground by ignoring your symptoms.
The road to being okay with your new life as someone living with chronic pain is paved with research, acceptance and acknowledgment of your symptoms. For those of you who are not in chronic pain, likewise, researching your loved one’s disease, then verbally showing acceptance and acknowledgment is the best gift you can give someone who is suffering. It is amazing what hearing the words “I believe you” can do for the soul. It is like being wrapped in a big soft blanket and having a hot cup of cocoa placed in your hands on a cold day.
Never forget that you own the right to tell your story as raw and honest as you feel comfortable with. You aren’t just doing yourself a favor by getting it out of your head and into writing, you are promoting awareness by removing the myth from your illness. Your pain may be invisible, but that does not make it any less real, any less scary, or any less debilitating than a visible injury. We spoonies all have a lot of people to prove wrong, from the 1/4 of primary care physicians who believe most of their chronic pain patients are faking, to emergency rooms that are ill-equipped to deal with chronic conditions, to unsupportive families who refuse to do their research, and of course general stigmas against pain patients that have existed for ages. These are all barriers to effective research, communication, and seeking out treatment. But they are obstacles that we as a group can overcome.
Raise your voices, tell your triumphs and your horror stories alike, others need to see what we go through on a daily basis and speaking out helps to break down those barriers and create road maps for understanding the whole of chronic illness, not just the symptoms, but the underlying causes and the body-wide effects created by living a life in constant pain. I know it is difficult, but only when we are not afraid to share what we are going through will we transform the silent suffering of people with invisible illnesses and chronic pain into a growing understanding that we too deserve to be treated with the dignity, respect and even admiration for what we deal with on a daily basis. It’s not just an idea, it’s a necessary change and we have the numbers, the intelligence, and the determination to make it happen.
Click on the thumbnail below to go to the larger version of my painting for Chronic Pain Awareness: