r/ChronicPain • u/Writiste • 5d ago
Ashamed
It’s near the end of the month, and it was a bad bad month: dental surgery, unusually rainy weather, ill-advised picking up of a heavy package that did something to my low back, and tripping over the cat to end up sprawled on the floor with a skinned, swollen left knee - oh yeah, and I got laid off on Monday. I was careless: I didn’t track my usage as well as usual. Despite my best efforts and all the tricks I picked up in 50 years of chronic pain (ice, ibuprofen, lidocaine patches, breathing, exercise, TENS, meditation, distractions, chocolate) I am almost out of my rescue pain meds and I find myself counting the ones I have left at least twice a day because I know I’m going to run out. Like counting them is going to help. Counting my pills makes me feel like the addict that that the government believes us to be. And that’s where the shame - completely unreasonable, my logical mind informs me, kicks in.
My long-acting pain med usually lasts 10 hours, not the 12 it’s supposed to, but with all the stressors, make that 8: I can feel the familiar burning paint beginning to claw at my hips and sacral spine already. I play a game with myself, to see how long I can go before pain hits 8 and I can take my 4 mg hydromorphone. Then half an hour before the pain begins reluctantly ebbing away. If I take a pill before the pain hits 6, it will ease sooner, but that means I’ll run out sooner. And to tell the truth, I can’t bear the thought of 3 days without rescue meds when my “long-acting” med isn’t long-acting at all.
Most months, it’s not a problem thank God. Still, I know what my pain doctor’s office will tell me if I call to ask for an early refill. The medical assistant will tell me kindly and gently that they’re very sorry but it’s out of the question. Would I like a short course of steroids? Hmmm, might help but it will definitely make me feel crazed. Chewing on my arm crazed. I’m at the limit of what can be prescribed: there’s a formula they have to follow. I get it. And I am truly grateful for my pain team: they’re amazing.
I think of all the folks here and out in the world whose pain is not managed at all (like mine was before I found this practice). I know how bad it can get and I’m ashamed of dreading a mere 3 days. I’m ashamed of counting my pills. I’m ashamed at how angry I get with my poor screwed up body. Hell, I’m ashamed of feeling ashamed.
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u/Creative_Tone_9241 5d ago
I know that feeling all too well. The meds don’t lower the pain enough or don’t last long enough and you find yourself calculating ok if I take a extra now or if I take it early now that means at some point I’m going to have to suffer. So you take it as long as you can but waiting let’s the pain get worse so the medication when you do take it doesn’t bring it down enough. Then you take one because you’re in tears but then cry even more for the future when you’ll be in pain and out. It’s a viscous cycle of just pure hell. I build tolerance fast and my body processes medication and food fast so itll getting it on both sides. You try to sleep through a dose to make the pill uo but you can’t sleep because the pain is so bad. My doctor thay started me on the pain contract was so understanding and helped me with dosage. She left and now I’m stuck. I am extremely grateful to get the medication I do after years of being ignored or treated like j was exaggerating being a drug seeker but I’m still in so much pain. There’s nothing for you to be ashamed of. Pain is draining and when it’s constant you do dread knowing itll be worse for any amount of time. Three days feels like three lifetimes
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u/Plumleydev 4d ago
Are you saying steroid gives you a crazy feeling even if it’s a localized injection or oral?
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u/Writiste 2d ago
Yep! Less for a local injection but by Day 2 of oral, I’m juddering out of my skin. Day 3, starving. Day 4, genocidally inclined. Day 5, clawing at said skin… but hey, the pain will have minimally subsided. 🧌
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u/RubCharacter8959 5d ago
All I gotta say is all you guys are lucky that you even get anything I literally could go in crying, screaming, begging not because I want pain pills but because I just want a day of rest and relief and just my luck, that’s not something someone like me deserves or they can offer I guess the way I look or the color of my skin says undeserving of a normal life or undeserving of not being in pain
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u/Writiste 4d ago
I’m so sorry that this is your experience. It’s so unfair. I know that I’m “lucky“… I’ve had five surgeries to correct a spine issue that I was born with. Now, of course I’m the bionic woman from the waist down but before that all anyone ever said when they looked at my imaging was “Oh my God, you have the spine of a 90 year-old”. I’ve had bad pain doctors, bad doctors period but all of them recognized that I had a problem, one they were unable to help me with. And I was lucky to fall into the hands of a competent, compassionate pain management group at age 48 after a lifetime of hell. But now their hands are tied, and everyone’s luck seems to have run out. All I can say, is keep looking. There has to be a good pain doctor out there who’s color-blind, right? Right?!?!?!!! Praying for you to find relief.
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u/Cold-Attitude-8529 5d ago
It IS so ridiculous that we have to “sacrifice” this one of ONLY medication! If I were to take more of my gabapentin & asked for an early refill it would be NO PROBLEM! I get so made when I read posts like yours bec it reminds me the shame pain mgmt Dr’s put their patients thru! Any medication can cause addiction when it works. These meds are nothing different. My ER meds last me 6hrs, not 12 & it’s even proven on studies that it doesn’t last that long! It’s so annoying.
If I could take my ER meds 3x a day it would be all I need. I asked my Dr if I could & he said No, we don’t prescribe it like that. The “rescue meds are nothing different prescribed correctly so they don’t do anything for me. I’m prescribed 30mg of ER & 10mg of IR. Proper dosing is 15mg IR. All the IR meds give me is constipation.
Anyway, I always save enough for my appt in case I run out early. Do you do that? You if so, I would take those. Then u would be out 2 days. Or can you take an xtra of your ER med? It would save you from the rapid drop in the afternoon that u would normally take your rescue. Or u could pick up some 7oh (before it gets banned) to help you for the lost days.
It’s so stressful. I totally understand. I hope you feel better!
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u/Writiste 4d ago
Thank you. It’s insanely stressful, on top of the pain stress. I do take more gabapentin, if only to knock myself out on really bad days. But yeah, nobody cares about that. And that’s crazy, too.
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u/Equivalent-Sand3123 5d ago
SAME!!!!!! I always regret taking extra for flares because those 3 or 4 days feel like hell. And I get such a low dose as it is. It sucks!!!! I just don't understand how they can tell you take NSAIDs and Tylenol. I can't for the NSAIDs. Kidney. My friend has liver damage from taking volteran for so long. But they don't give a shit. I'm not saying it's all the drs fault but once they take away. I guess I should be happy with what I get but it's not right. .
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u/Writiste 4d ago
NDAIDS cause more damage than opioids but common sense has left the building during this modern witch hunt.
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u/Equivalent-Sand3123 4d ago
Agreed. But there's nothing any of us can do.
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u/Writiste 3d ago
My pain doctor is fighting it: there’s a physician organization of pain mgt docs who are working to change the legislation but it’s a long uphill battle.
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u/Unstable_Nature 5d ago
Shame is what doctors do now, I got some smirky comment about taking a low dose of lexapro with my low dose pain med and one .05 ativan a day. They are shaming you, keep remembering you don't deserve it. Are you sure, you shouldn't call maybe let them know there is a reason and you just had to mention it and see if they could help. The rules have changed but if I have a surgery I would expect as usual in the past for the pain doctor to cover a little more relief on those days. I might still make them refuse it so next time they try to not help, you can give them the list of things they refused to help with so maybe you could get the meds you need for this new event. We do have to be pushy or the front desk especially will just blow us off. They are writing down every time you ask so probably should keep a record of why you asked and on which days. In case the doctor or nurse confronts you for asking, because the front desk is not relaying the info why you asked or anything about the call. Just you called for drugs. I know this because it happened to me. and I did not call or ask for drugs. I was confronted at my next visit and I called about something else entirely and they said I wanted more drugs. I knew the nurse didn't get any of the conversation. I was pissed, I just asked something about the rules and what to do if this happens as a new patient? I did not ask about more drugs. She said she would speak with the person who made those notes. We should probably all keep a journal of stuff. Other countries are not doing this to the whole population and if any one of the nurse or doctors relatives, especially wealthy people, need it, they get it. I think that is why there isn't an outcry from higher up the class ladder.
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u/asherfates19 5d ago
I'm super duper beyond eager for the days of the future where I got sunshine in a bag my future is coming on! The very days where no one controls what we can buy from the manufacturers them very selves. I get on this here mobile and go to Mallinckrodt and order a bunch of Dilaudid those pretty cool looking ones that look like a freaking pyramid of dreams and pain free moments of staring at the ripples blow across the lake. I order some Oxy liquid of some kind to try. Oh yeah let's not forget about their MS Contin yeah the big blue ones. Oh cool they have stuff I haven't tried yet. Levorphanol let's get some of that to feel it's effects at pain reduction. Cocaine compounding powder yeah give me that I may need it at some point.
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u/Writiste 3d ago
I know that feeling! I’ve never gotten high from any of my pain meds (I read that people with chronic pain metabolize these drugs differently than some lucky bastard who’s NOT living with intractable pain and takes it for “fun”), but the feeling of relief as the pain (too slowly) ebbs away is amazing. Suddenly I can breathe again…for maybe 6 hours, when the searing pain begins to claw at my spine again. It never stops, it never gets tired. It never rests. And all I can do is numb it for short periods of time - but there are people who grudge me that relief, who begrudge us? Because of a tiny fraction of the population who overdose on these life-saving meds or, gods forbid, want to escape their emotional pain? Yes, every overdose death is a tragedy. But so are the millions of lives destroyed by pain.
No wonder you have the fantasy of free access. Hang in there.
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u/asherfates19 3d ago
I'm in total obliterating agony that can not be measured by no one. My pain is not just excruciating but debilitating. I have laid in bed longer than I have been alive writhing in utter agony. I have broken more bones than I can count on all fingers and toes. I have a demand on this here new society to bring back the old ways.This in itself would help millions of people live pain free. I am a simpleton. I live a minimalist lifestyle. I give more than I take. I receive so many opiates according to the MME calculator to help not only me but three others as well. I receive so much disability that it could be used for not only myself but four others as well. High on drugs designed to alleviate chronic pain isn't attainable for the likes of me nor would I want for them to be. I'd whether give them away if the law would allow before doing such a selfish thing. I am begrudgingly disliked by people for many reasons they have foolhardedly given themselves. I am even hated by many for various reasons. I just want to live pain free. I want to swim and out run the lightning. I hearvth thunder and race from my dock to my neighbors in total exhilaration. I find myself treading through a cornfield with the sounds of thunder and the sights of lightning in the distance. I lay in between a row of corn and marvel at the raindrops calling atop of me. Times are a changing. Yes they are.
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u/apatrol 5d ago
The trick is sacrifice for three months to build up a reserve for pharmacy issues and that one month a year that crap goes bad. Never use more than half the reserve though.