More reality checks when it comes to chronic pain and opiates, via a super smart fellow blogger! So happy to print this and put it in my medical binder for those idiots who think I should just suffer endlessly, needlessly, and be happy for the privilege.
It’s just so wonderful when people form an opinion based on facts and not histrionics.
Hooray for using our brains!
Pain & Opiates: Perceptions vs Reality
1. false: Opiates take pain away completely.
TRUE: Opiates do not remove chronic pain, they do not numb pain like Novocain, they merely dull it enough so that it isn’t all-consuming.
2. false: Pain is the body trying to tell you to stop, so you shouldn’t take opiates to cover up the pain signals.
TRUE: Normal pain is an alarm to take action, but chronic pain happens when the alarm gets stuck in the “on” position – the switch itself is broken.
3. false: Opiates make you dull, confused, and non-functional.
TRUE: When used for pain relief, opiates allow people to be more active and functional, get out of the house and socialize, sometimes even continue working.
4. false: There are other pain medications that work just as well as opiates.
TRUE: Opiates are the most (and often the only) effective medications for pain.
5. false: Opiates have severe and permanently damaging side effects.
TRUE: Opiates have fewer and lesser side-effects than most of the other medications prescribed for pain.
6. false: You will get addicted if taking opiates.
TRUE: People taking opiates for pain are statistically unlikely to become addicted unless they already have addictive tendencies (5% chance). However, regular use of many medications causes dependence after your body has adjusted to them.
7. false: If you take opiates for too long, you’ll get hyperalgesia.
TRUE: Opiate-induced hyperalgesia is extremely rare in humans, and this scare tactic is based on just a handful of very small research studies.
8. false: If the pain is constant, you’ll get used to it and it won’t hurt as much.
TRUE: Pain that is allowed to persist uncontrolled leads to changes in the nerves that can eventually become permanent.
9. false: Opiates work the same way for everyone.
TRUE: Different people get the same amount of pain relief from widely varying dosages because our bodies are all different in the way we “digest” opiates.
10. false: It’s better not to take opiates because they damage the nervous system and cause hormonal imbalances.
TRUE: Persistent pain results in the same kind of damages to the nervous and hormonal systems.
11. false: You should not take opiates because your pain won’t improve.
TRUE: Chronic pain can only be treated, not cured. Opiates are often the best means available to treat the devastating pain symptoms until a cure is found.
12. false: If you start taking opiates, you’ll just have to take more and more forever.
TRUE: Most chronic pain patients finds a stable dose of opiates that works for them. If doses need to be increased, it is usually because the pain condition gets worse over time.
13. false: People only want opiates for the high.
TRUE: When taken as prescribed for chronic pain, opiates do not make you “high”. The same chemicals that make illegal users “high” go toward dulling the pain instead.
14. false: It’s better to tough it out.
TRUE: Denying people pain relief sentences them to a life of unnecessary suffering.
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“The patient uses opioids to relieve pain and maintain a normal relationship with the real world; the addict takes opioids to escape from reality.” – Ronald Melzack
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Many people disabled by chronic pain are unfairly accused of lying and faking, so here’s some myths from that category too:
1. false: People who complain about chronic pain are just trying to get SSDI.
TRUE: Most people disabled by pain desperately want to work. Many had to give up high-level, well-paying positions and now live in poverty on SSDI. There may some fakers, but this is not a reason to deny SSDI for truly disabling pain.
2. misleading: If injured workers are given opiates they are unlikely to return to work (statistically true)
TRUE: This is probably because their injuries are serious enough to cause chronic pain and require opiates, not because the opiates are keeping them away from work.
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1. Source for addiction statistic:
I wish I could sleep.
This pain leaves me in limbo,
No rest makes me slow.
Yep, that’s what you get at 4am. I have been in so much pain. I know it’s temporary, but it would be more temporary if I could get to sleep at any point during one of these flare ups. Going on day three for the third time this month in which I have not been able to sleep more than an hour or two… that’s a third of my nights this month! Plus, I cannot nap. Totally incapable of it unless I’m beyond sick. There are a million things that are on my schedule tomorrow. I want, need, demand some sleep before I have to face another day in this much relentless pain.
I hope against hope that everyone else is enjoying some actual sleep with much less pain than this. I am sending you extra spoons, just in case. I won’t be able to function anyhow, so I’m happy to give them away to a good home!
I hope you all had the Christmas that you were hoping for, and even if you did not, I hope you found something in these holidays to be grateful for no matter what else is going on. My Christmas was full of many things, one of which was love, the other main component of which was pain.
I tried to write this post before I took some real painkillers, and whoa, I am not proud of the original version, but it does convey accurately what living in non-stop pain is like, so it may yet be posted, despite my embarrassment.
Right now, instead of salvaging/editing that previous documentation of hopeless levels of pain, I am going to talk about why it matters that we keep track and research, why it matters that we keep searching for hope in any form, and why it matters that we are able to openly discuss pain with people who are educated about it. Not very long ago, less than two hours, I was sobbing uncontrollably every ten or twenty minutes, unable to walk, unable to shift to a position in bed that would alleviate it, unable to sit at my desk or concentrate enough to talk to my boyfriend at all. So I am grateful, very grateful for painkillers, painkillers which I have kept in a dark place hidden away from everyone since around last time this year when I knew I was not going to be seeing the same doctor any more and that meant I would probably lose access to much-needed medicine that helped me to function just a little bit. And I was right, the next guy was a complete asshole, and he basically destroyed my life in ten minutes because he was afraid to treat pain correctly. Thank you, fucked up system, thank you dick-hole doctor, thank you crippling grief for my boyfriend’s father and severe anxiety at the time that kept me from fighting back.
Even these secreted away painkillers are leaving me close to tears right now, precariously perched between a 7 on the pain scale, which is barely manageable, and an 8, which is less manageable. Earlier I was at an extreme 9, but refusing to give in. Getting just a slight reduction is everything in this game; I must remind myself constantly at the moment to accept that 10%-20% relief is still better than the pain just growing, spreading and getting brighter and sharper and more intense to the point that even my breathing was rationed out because it hurt my spine too much to flex with each inhale and exhale.
Nerd moment: I can accurately say that the pain pills decimated my pain, because the word actually means a reduction of 10% (deci-) or more, traditionally it referenced killing one person in every ten as a punishment for the group, usually in the case of soldiers on the losing side.
For me personally, 10% is not enough for me to even consider something on sale in a clothing store, and it honestly wouldn’t mean anything to me if I didn’t know from experience that a tenth less is good news here. Very good news. It means the world to be allowed out from under the crushing burden of severe pain just for a little while. This is what a 10% reduction in pain means for me:
With that 10% reduction in pain, I have been able to make my own cup of coffee, walk up and down a half flight of stairs with a five minute break that I passed off as just a friendly chat with my downstairs roommates, and I popped some rolls in the oven that I made from scratch for Christmas and kept dormant in the fridge until this morning. Not much, not much at all really, but compared to having difficulty breathing due to pain, plus pain-puking which hurts even worse, it’s like magic. Doctors need to understand that non-stop chronic pain can kill, no matter what mood elevators I am on or regular dose of anti-anxiety medication, I am always shocked when the breakthrough pain and flare ups strike, often to the point of feeling helpless and hopeless against the severity of it. Sometimes depression is unavoidable at that point, at least for me.
Even if it only lasts for a few hours, the kind of depression that hits when I simply cannot cope with the level of pain that I am in, and when I know it will keep happening even if it stops for a little while, and nothing I try works even a little bit; at that point it is actually equal parts depression and desperation, and that is dangerous. It can be hard to keep a clear head when desperation enters the picture. With chronic pain, an episode of desperation and depression (both things most of us work very hard to keep at bay on a daily basis) can quickly turn into wondering why I am even here, wanting to escape my body by any means necessary, considering self-injury, wishing I could disappear, and a few times actively wishing to die without any set plans. I know many others spiral deeper than that through no fault of their own, and often because of misdiagnosis and mistreatment of their pain. Throw a little sleep deprivation/ painsomnia into the mix and a lack of understanding external support networks and all of a sudden you have a recipe for disaster. The data from a poll earlier this year, done by OHSU’s Dr’ Bennett, who is famous worldwide for his chronic pain research, found that a staggering 39% of Fibromyalgia patients have considered suicide. This is heartbreaking, terrifying data. More people with a disease that is supposedly not progressive or “dangerous” have considered suicide than those with Multiple Sclerosis or Lupus, which are traditionally considered much “worse” conditions to have. How awful.
Something needs to be done to provide these millions of people whose treatments are obviously failing them completely with a means of pain control that can allow them to see beyond this painful second into something a little better. I am so glad that I wisely hid away a few backup painkillers for breakthrough pain. Pain that my doctors keep insisting does not happen. I wish they could try living in my body for a week and then tell me how they feel about prescribing painkillers to chronic pain patients. We just need a break. I need a break in order to get to live my life a little tiny bit and most of all in order to get my shit together. When help is visible to me but I am not allowed to take it or ask for what I know will help me, it just feels like they’re being unreasonable and cruel. It’s terrifying to have your life in the hands of someone who does not know even a fraction of what you do about your body. It’s even more terrifying when the people who hold your life in their hands can be so openly hostile towards us when we need help the most.
We deserve so much better than the way that we are treated when we need help. I deserve better and more compassionate treatment than I am receiving and than I have received in the past. I certainly never want another pain patient to have to deal with the bully doctors I have been stuck with. I’m so tired of MD’s throwing their hands up in the air and saying they can’t help me when the answers are right there in front of them, and they’re afraid to prescribe it out of ignorance and pain-shaming. Whatever I was taking when I was still able to work part time in mid-2013, I need that all back in order to function and focus just barely enough to get to a point where my disability process is underway, my partner understands me and what’s going on with my body better, and all our paperwork is finally filed for all assistance agencies. Since 10% relief is a minor miracle during a flare up, I am no longer feeling desperation clawing at my neck, trying to burst out of my skin. But I know it’s lurking inside of me, waiting to strike in my next moment of pain and weakness. I know I can hold out time and time again, because I always have, but a part of me is scared of how bad I want out when it gets bad enough to make me vomit and sometimes go into shock.
I will do whatever it takes to keep holding on. This is just a bad day, it doesn’t mean I have a bad life.
Right now, I am looking to the humor and irony that coexist in how I have never been so uncomfortable in such soft, loose, comfortable clothing. At least there’s that! Amen for fleece. I never thought I would say that, but here we are, and I am wearing a fleece lined hoodie and fleece pants and it is pretty awesome.
Hilariously, somehow I woke up at 4am last week, sitting in my PJ’s on the side of the bathtub with a towel folded under me, the biggest heirloom tomato of the season from my garden in one hand, and my hairbrush in the other. The tomato remained unharmed, don’t worry!
I have other “sometimes” sleep problems, they crop up and go away and return mysteriously again, with no known triggers. I have sleep paralysis that feels like I am choking, and I am usually trying to scream the entire time. They usually strike during a pain flare up, which makes them extra enjoyable since being stuck in one position is excruciating!
I mumble, giggle, and “speak in tongues” according to my boyfriend. But not all the time. Sometimes I get kinda violent in my sleep and have landed a punch on my poor partner. He’s a tough guy, but apparently I hit a lot harder in my sleep than I do in real life. Hah, he’s such a saint!
Since I started taking all my meds, the sleep problems have persisted on and off for three years. Possibly it’s because of the accident I was in. Who knows. Remembering a dream is a precious precious thing with all the drugs I have to take every night in order to be able to get out of bed the next morning. I get so excited, but even when I do remember one, I can’t remember it long enough to write it down because all I can think of is what a let-down it is to still be in as much pain as I was the night before, and almost as fatigued too. Hopefully as I start to detox off the meds, I will start to dream again. And sleepwalk less!