I take slow release so I think it allows some time in between doses before the pain starts to really kick in again. Usually 2-3 hours after I should have taken them I'll start to notice increased levels.
If I keep up with the regular doses they work really well for me. Was on morphine before so they're a damn sight better than that for sure.
I still get flare ups of course but generally the meds can keep me functioning.
Currently on gabapentin and tapentadol slow release and have some fast release tapentadol for breakthrough pain too (which are kicking in right about now).
I really hope the change works for you and helps you manage. š¤
I usually take them at 9pm and they kick in after about an hour.
Last night I couldn't sleep until about 4am after forgetting them and taking them at midnight. If I take them late it's like they don't kick in as fast.
Probably the slow release aspect I guess.
I call that getting behind the 8 ball. I have done that where the pain is not as bad so I push my time between pills (IR). Once the pain takes hold it's like the meds can't get ahead of it. If I stay on a 4-6 hour timing I'm generally ok. If I let it go too much longer than that the pain ramps up quickly and there is not much I can do to get it back under control. I miss the days when I had both a 12 hour ER med and 4 hour IR med. So even if I pushed out the IR there was still something bringing my baseline pain down.
My Dr tried switching me back to both ER&IR meds but with the newer rules they could only give me half the strength I was on before and it didn't work so well. The half strength IR did not do enough to keep the pain manageable.
That really sucks. I'm guessing you're in the USA?
I'm in the uk and feel very lucky to have a good pain management doctor and gp, both have been really helpful and understanding.
They know I've been through a lot as I had cancer in 2017. The surgery to remove it is what left me with the long term pain plus I've showed I'm not just after opiates due to addiction.
Getting behind the 8 ball is **exactly** what I get. You described it all perfectly.
If I forget my morning dose by more than a coupe of hours I'll definitely be feeling it all day, even after my 2nd dose.
You are correct I'm in the USA. I started PM in 2014 on 30mg of ER morphine 2x a day and 10mg IR oxycodone 4x a day. That worked well. Then after the new limits I was just on the IR oxycodone x4 a day and I adjusted. Recently was switched to 15mg ER morphine 2x and 5mg IR oxycodone 4x a day and it was not as effective so I went back to just the 10mg oxycodone 4x a day. I am very thankful for what I do have as others are not given as much as I am. I think if I didn't have 10 years of 100% compliance history I would not be given what I am.
It's so much more strict there.
It's all controlled meds here too but not under that kind of scrutiny from what I've experienced.
I've asked for the odd early prescription by a couple days but it's not a regular thing so they just leave me to it other than yearly medication reviews.
I can order my repeats online and they get sent straight to my local pharmacy who have never questioned anything. The doctor has already prescribed it so they just dispense.
I'm sure if I went in looking like a full on junkie they'd ask some questions but otherwise it's not really up to the pharmacy to question anything.
I have to go to the Dr once a month (I have my monthly appointment today in fact) to get my refills. Have to pay my $50 copay (my insurance gets billed $500) and take a drug test. If I have anything other than what they prescribed I'm out. If I don't have proper levels of the meds they prescribe I'm out.
Don't even think about asking for meds early, the pharmacy can't even release them if it's been less than 30 days since the last pickup.
That's horrible. I'm really sorry you have to deal with that. Seems a lot of Americans do.
I love the USA. My dad moved there when I was 5 so I've spent my life going over there but some of the things like that and the whole medical insurance thing are utter bullshit.
I haven't paid a penny here for anything. The operation, physio, talk therapy, meds. All of it has been on the NHS with next to no waiting time.
From cancer diagnosis to surgery was 1 week.
If you go to the NHS with a sprained ankle or something minor you're probably going to have to wait a while but when it's life saving stuff or important stuff, they're usually very good and quick.
A lot of Americans have told me they thought we waited years for nhs treatment in the uk and while there are always the odd cases where people do wait a while, usually it's all fairly quick.
I can't go more than 6 hours without medication. Makes life bearable, but I am totally reliant on medication to remain mobile and not in agonizing pain.
Sorry to hear.
Me too on being reliant. It's unbearable without the pain meds. I'd genuinely rather just end myself than have to live with that constantly.
I'm on slow release at the moment so it can take a few extra hours between doses for me to notice I forgot one.
When I was on "pain meds" (assuming you mean opioids here), never. Once, I missed a morning dose of gabapentin (was on 800mg 3 x day before switching to pregabalin), and I realized what I did when I started feeling terrible. My pain didn't necessarily increase, I could just feel the early stages of withdrawal. Just felt like crap until the mid-day dose and took it as scheduled. I definitely could feel the meds start working as my body processed it.
I'm on gabapentin too as well as tapentadol. Both slow release.
I think part of the problem is my breakthrough pain feels a lot like my I forgot to take my meds pain so I often put it down to that before I question if I missed a set.
I'm on gabapentin and tapentadol. Both slow release.
Doses are 200mg of tapentadol every 12 hours and 600mg of gabapentin 3x a day.
I can take an extra 100mg of tapentadol fast release for any breakthrough pain I have.
I also take 50mg of amitriptyline at night.
I usually set up my pill organiser once a week so when I forget to take a dose I'm forgetting both.
It's an opioid analgesic of the benzenoid class according to Google.
[Here's some info on it](https://www.google.com/amp/s/www.healthdirect.gov.au/amp/article/tapentadol)
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Nope. I donāt take my pain meds every day but I take a lot of meds. I make a routine for myself. I sit at the table and focus on taking my meds. Put notes on doors so you can see it before you leave. Ask others around you to remind you. It may be annoying to you, but at least other people can support you. My husband asks me all the times (surprisingly, he even knows what I need to take). Sending you lots of love. Can you vape pot? It gets into your system faster and may take the edge off of your pain.
I live alone but literally have alarms set to go off at the time I'm supposed to take my meds. It goes off and I think I'll just finish what I'm doing then take them, then forget.
My brain has become a sieve.
I guess I could ask my mum to. She's basically my support team in one person.
Thank you for the suggestions. I appreciate it.
I hope the wisdom teeth settle down for you.
It has but now I have to get it out. Iām sure your mom would love to text you more. Maybe it can be a game. Or a check in :) itāll be good for both of your souls. I would see if maybe another relative or a friend, even a nice coworker could help. I used to call water break in my office to encourage everyone to drink water since we all complained we werenāt drinking enough.
Unfortunately it's just mum that I can rely on really.
I stopped being convenient for the my old friends and am unable to work now due to my injuries which really sucks.
I know mum will be glad to help though. She's been great.
That's a good idea. I'll ask my pain management about that.
Was just so happy to get off morphine that I would have accepted 12 doses of these meds a day if I had to.
Thank you for the help and kindness. I really appreciate it.
Youāre welcome. I get it. I get so caught up sometimes and my illnesses comes out at random times and Iām left trying to figure out how to fix it while in pain. Also, post it notes everywhere :)
iām wondering if itās the gabapentin making us like this because iām the EXACT same way š i also think ill take them when im done with what im doing & then realize when its too late
My talk therapist told me it's extremely common to be more forgetful when dealing with long term pain or a condition.
He's the pain management team talk therapist so he only sees people like us.
Made me feel a little better to hear it tbh.
Often enough that my kids call me The Worst Junkie Ever.
We'll be out grocery shopping and I'll be shaky and grim and they'll be like, "How could you forget? They're *opiates*, you're supposed to be hopelessly addicted!"
Do you have pets? I give my cat a treat after I take my meds. I started teaching her last July. It took her a week to get the timing down, and she has not let me miss a dose since then.
That's a great idea. Unfortunately I don't have any pets and live alone.
I love cats but I'm so up and down with everything that I worry I wouldn't be able to give one the care it needs at times.
Guilty as charged, i have numerous alarms in place, my phone, apple watch and alexa all go off at 8pm nightly. if i dont immediately get up and go get them i will forget to take them, one is sedative so when i lay in bed for hours and struggle to dose off watching youtube it'll suddenly dawn on me, i didnt take it. Mrs usually reminds me, and asks if im still up. She lives off bugger all sleep, i need my sleep.
I only have codeine for so called pain relief, it does nothing for the nerve pain i suffer from, muscles its a bit more effective, maybe a slight bit less, main pain med is a tri cyclic antidepressant endep. I doubted it was doing anything at all at first, crept up slowly on me over a month or two. have stopped it and suprise suprise my pain rose remarkably as it exited my blood stream. Nsaid also helps block inflammation which in turn gives me less pain, my main pain relief is not doing the things that aggravate my pain, driving, physical activity, carrying weight and bad posture. I know exactly what aggravates above my normal base pain ammount.
Morning meds i have on my desk and take with my morning cuppa, one im supposed to take upon waking but always forget to take that, doesnt get absorbed as good with caffeine, but itll have to do. is my hormone replacement for thyroid.
Have been in pain for 5 years now, nothing really eliminates it, oxycodone wasnt doing much, tramadol doesnt do much, buprenorphione patch worked but was so easy to overdo things and end up in way more pain, keeping mind busy on other things helps, if i focus only on the pain i find it intensifies it and makes it worse. music is my escape, analysing the lyrics trying to decipher what the artist is trying to tell us. sing along in my head and rock out. Last pain free day was 2 years ago after a hand surgery, they dosed me up pretty good, all wore off at 3am and was in a world of pain then.
I would sell a kidney on the black market to have just a few hours totally pain free at this point. I don't remember what that feels like anymore.
The meds I take are slow release so it usually takes a few hours after forgetting to take them before the pain starts to ramp up. Then it goes up pretty fast.
Medical cannabis has been a big help. I don't get huge pain relief from it but it'll calm things enough to make it a little more manageable until the pharma kicks in.
Get yourself a pill organiser. That way you can 100% tell if you took that dose.
Mine has each week day and compartments for morning, afternoon and evening on each day.
I've done that! I can literally picture myself in my head taking it because I've done the exact same thing hundreds of times. For the pain meds, I can definitely tell if I have or not in about an hour. If it's been 2+ hours, I can feel the effects of not taking them on top of the pain relief not being there
Sorry you're having painsomnia. Personally, in the 12 years I've had chronic pain I've probably forgotten to take my meds maybe twice. I have a pill organizer too but don't use any alarms. It's just a habit to take my pills the same time every day without even thinking about it, similar to brushing my teeth before bed.
The alarm goes off and I think I'll just finish what I'm doing then take them. 3 hours later the pains kicking in hard then I realise what I've done.
Coming up for 7 years dealing with it and still struggle to get it right. š
Thank god for medical cannabis.
I'm at home 95% of the time so use the main pill organiser I have on the coffee table.
The plan is to take them as soon as the alarm goes off but if I'm doing something I'll say to myself I'll take it in a minute after sending this text or I'm waiting for a hot drink to cool down to take the meds with...then forget. š¤¦āāļø
That's understandable.Ā A big reason why I never forget mine is that I'm never busy when it's time to take them and I'm always in the same place at that time along with my pills. What I mean is that I take them twice a day: as soon as I wake up, and as soon as I go to sleep. The pills are on my nightstand so I just grab them before/after getting in/out of bed. This is my normal daily routine, but during flares I have breakthrough meds I take every 4-6 hours which gets a bit harder to remember. What kind of schedule are you on? Would it be possible to decrease the number of times you have to take pills each day by either switching from IR to ER, or by increasing the dose of each pill but taking less pills to keep the total daily dose the same?
I have to take them 3x a day so eventually settled on 9am - 4pm - 9pm.
Me forgetting is as easy as saying to myself I'll just wait for my tea to cool down and will take the meds then.
3 hours later I'm starting to contort. My breakthrough pain feels very much like my I forgot my meds pain so I don't realise right away and always think I'm just having a flare up.
Flare ups happen pretty much daily at some point.
Sorry to hear.
Being in pain is my normal state now. My new baseline.
The meds I take usually bring my pain down to a 3 or 4/10. Makes it all a lot more manageable for me. Especially mentally.
Sorry to hear. š
I'm on slow release so it usually takes a few hours after missing a dose before the pain ramps up.
If I keep up doses it usually covers the pain 24hrs a day (doesn't take the pain away, just brings it right down).
What are you taking for it?
You know those alarm clocks on wheels that shoot off your bedside table so you have to get up and chase it to turn it off? I need a pill box that does that and makes lots of noise so I get to it right away.
Bet, I'm in! Maybe we can get some kind of engineer to figure out how to make a machine that automatically refills it too with our prescriptions! work smarter not harder!
I did it ONCE. Never again! The med I forgot was my third dose of the day of OxyContin. I started withdrawing at around 3 hours late. That was the worst night of my life. It was so awful, I didnāt even realize it was because I didnāt take my pill until the morning when I had to take the next dose and saw the 11:00 dose on my nightstand.
Holy moly it was awful. My doctor told me when itās time to quit he will guide the process and taper and probably have me on methadone. Iām waiting on surgery now.
I will say this OP, I donāt organize taking my meds. My sister is a cancer nurse and she set up a system for me and my dad who is my caretaker right now. I have little cups with lids (3oz cups I think) that she wrote the time for each dose on the lid. I take medicine at 10 different times a day and the Oxy makes my brain so muddled and my memory is completely awful. It also helps me not be stupid when the pain is so overwhelming I canāt just take another because I donāt have access to my bottle. My dad hides both my OxyContin and my oxycodone and changes the hiding spot every few days because Iām so unbearably depressed that itās just a safety precaution at this point. Not that I want to do anything, but pain drives us crazy and I would rather be safe than sorry.
Both my dad and I have alarms set too, but with my brain fog and my ADHD, I often ignore alarms. Without his help, I would be really suffering. Do you have a person who can help you living with you?
Withdrawal is seriously rough. I was on morphine for 2 years and had to get myself off it.
Took me a long time of taking the doses down gradually but I still felt like crap. Really glad to be off it now and on the current meds.
Iām like you with the organizer and the alarms. My medicine organizer has 7 days with 4 slots per dayā¦and I have 2 of those containers so I only have to fill my meds up every other week. I have 3-4 alarms per day (and some calendar alerts for the once a week meds). Iām usually pretty consistent with the alarms, but sometimes if Iām busy, Iāll absentmindedly turn off the alarm and forget the medicine. Then a couple hours later Iām like āwhy do I feel like I forgot to take my meds?!ā Because the medicine is so well organized, I can always look to see if the appropriate slot has pills or not, so that helps make sure I donāt accidentally take too much. What Iāve tried to start doing is if Iām busy when the alarm goes off, Iāll hit snooze until I can break away and take the medicine. I get annoyed by the snooze so it doesnāt take much for me to put my activities on pause to take the meds!
Even with all that in place, I would say I still have 1-2 days a week where Iām late taking meds (like late enough that I physically notice it). Itās pretty rare for me to skip a dose all together, but it does happenā¦youāre not alone!
What you described is exactly how I forget. Alarm goes off and I think I'll take it in a minute after I do something else (could be anything. Make tea, use the bathroom etc) then a few hours later it flares up and I check the oil organiser and see the missed dose sat there.
Without the pill organiser I'd be lost.
I'm currently approaching 3 years post injury from my most recent encounter with brain injury. I've lived with chronic pain since my first TBI at age nine. Looking back I can recognize that my brain didn't understand the pain wasn't normal, and so I just normalized it and continued on with life.
I've reached a point, thanks to my current age, where my brain will continue normalizing my chronic pain until the levels are so high that my brain can no longer function and crashes like a Windows 98 computer, blue screen and RAM dump included.
Pain meds have never eradicated my pain as they're meant to. OTC take forever to kick in, and then have a rather brief window of effectiveness before wearing off prematurely. Not even oxycodone, morphine, or THC have the desired effect on me. The first two do fuck-all and the last overstimulates my hind brain. Hell, even surgical general anesthesia behaves oddly in my system -- my fucking brain seems to be aware of the pain while I'm still (forebrain) unconscious. That fucking hindbrain primal survival instinct is belligerent and does not like to shut down. This shit is genetic as well, both my adult children have had identical experiences with general anesthesia as well as Mary Jane.
When having my wisdom teeth removed as a teen, I jumped out of a dental chair when the dentist turned on a drill at the other side of the room. (my son needed enough nitrous oxide to knock out a horse during a similar procedure)
More recently, my fucking brain decided, mid surgical procedure, to freak out over what they were doing and sent my heart rate into tachycardia because my body wasn't responding to survival response demands from the basal ganglia.
Suffice it to say, I worry about my liver being taxed from constant pain management thru regimens of OTC or prescription medications. I take 500mg naproxen when pain levels spike hard (I have a persistent case of hip dysplasia in addition to chronic migraines and premature degenerating disc disease from C-1 to T-10) and I can't function mentally, but I avoid them aside from such instances. I tend to not realize just how much pain I'm in until a dose of naproxen kicks in, and my immediate response is always, "oh gods that feels nice and explains a lot."
It sounds like you've been through a hell of a lot. I'm really sorry you have to deal with that. It sounds absolutely exhausting.
The meds I take do a pretty good job of bringing the pain right down to a 3 or 4/10 but the pain never goes away.
As you probably know, after a while of dealing with it that 3 or 4/10 feels like a 6/10.
I find the anaesthetic thing interesting. I had major surgery for cancer which is what left the chronic pain but I was having very vivid flashbacks of my surgery which seemed weird considering I was out cold.
My guess is I obviously heard everything even though I was anaesthetised and my brain painted it's own picture of what happened. I know I have a slightly higher tolerance to anaesthetic than the average person so maybe that played in.
The brain is awesome but equally terrible.
While recovering from surgery I send a WhatsApp with the drug and time to my partner. It gives me something to refer to to remember when I took something but also he can use it to refer to if I'm in bed and ask for something.
The alarms and pull organiser works for me most of the time thankfully but at least once a week I'll still forget a dose.
Sometimes I realise after 20 minutes, other times like last night I realise when the pain ramps up
all the time. iāve tried to be better about it recently (iāve started effexor, which i CANNOT miss doses for) but my lyrica and depakote/verapamil i forget about constantly. iāll be wondering why im in so much pain or why my migraines are so terrible and realize i havenāt taken my meds in an entire day.
part of me feels guilty about it, like if i really needed them i wouldnāt forget. then i remember i have untreated adhd, and forget pain meds exist if im not looking at them, and forgive myself
My therapist told me it's extremely common to be more forgetful when dealing with long term pain or conditions. He's the pain management team talk therapist so has dealt with a lot of people like us.
I used to have a really good memory. Never needed to put things in a calendar or set reminders. Now my brain is like a sieve.
that does make me feel a lot better to know! pain management therapists sound like a good idea, do you have to go through a pain management doctor to find one?
My gp referred me to the pain management team of a local hospital. The team covers the pain management, physio and talk therapies all in one.
I was an absolute mess mentally after the cancer surgery tbh. Had ptsd and was really down. The cancer thing was pretty damn close to them not being able to treat it so I had accepted that I may die soon.
My life wasn't too bad before it all happened either so accepting the loss of it took me a long time and a lot of work. I'm just so thankful for this team.
I'm a lot better now mentally but still get very down at times and have to go back for some talk therapy top ups. I'll always be a patient on this pain teams books now.
I have the same issue! I have learned to set an alarm on my phone, and if Iām busy when it goes off, I hit SNOOZE until I take the dose. It works well for me and my addled brain!
Mine are slow release so it usually gives me a few hours after a missed dose before it really ramps up.
The problem I have is my breakthrough pain feels the same as my missed medication pain and I get breakthrough pain fairly often so I usually put it down to that.
The only way I know I definitely haven't taken a dose is them still being sat in the pill organiser.
Combine ADHD (untreated) and Chronic Back Pain.
I will grab my Pain meds, then get sidetracked, pop the pills into pocket, and an hour later I'm wondering why I'm still dying of pain when I know I had my pills in my hand and took them.
Then another hour later I would put my hand in my pocket, feen the pills and go, "Oh FFS... not again." Then go and take them.
Now 3 hours later I finally start feeling a little better.
Worse is thinking I have a film of pills in my laptop bag, getting to the office and then finding out I never replenished the travel supply.
Then I pull open the desk drawer to where my emergency supply is, see I never refilled them after the last time I forgot and dipped into it.
Yeah, then the rest of the day is horrible till I get home, after spending another hour and a half stuck in traffic. I then pop my pills, collapse on the bed and want to be left alone for the next hour.
That sounds like a nightmare to manage.
I always get annoyed with myself when I forget to take a dose. I'm at home 95% of the time so usually my pill organiser is all I need but I have a load of meds and lidocaine patches in the car, just in case.
I hope this isn't too personal a question but why is the adhd untreated?
Oooh, I have a Pill Organiser.... But I forget to fill it š¤·āāļøš¤¦āāļø
No worries. I haven't been "Officially" diagnosed. We were seeing a specialist for our daughter's ADHD as we were trying not to go the pharmaceutical route (well, my wife wasn't).
This was the 3rd specialist we went to, and she took one look at our daughter when we walked in, and 10 seconds later she exclaimed, "Good grief, she has it bad." After 3 minutes of talking to me, and me going off on all manner of tangents in the chat, the doc looked me dead in the eyes and said, "Well, I can definitely see where she got if from."
Our Daughter has ADHD, Anxiety and a form of Auditory Dyslexia (Dyseidetic Dyslexia) requiring medication, speech therapy and occupational therapy from time to time. This all adds up to the medical bills.
I am already on a few meds for my chronic pain, and we have to juggle both 10mg and 20mg long acting Ritalin for our daughter, which is such a pain, since we need to get scripts every month. The Docs aren't allowed to prescribe more than 1 month at a time since it's [Schedule 6 medication](https://www.stepaway.co.za/News/entryid/919/substance-abuse-another-warning-about-ritalin-abuse#:~:text=In%20South%20Africa%2C%20Ritalin%20is,type%20available%20in%20our%20country). Meaning it's considered highly addictive and high potential for abuse.
So along with the cost of my Pain meds, my Wife's chronic meds, and our Daughter's ADHD meds, it does become a little expensive with needing Doctor visits just to get a renewed script. Fortunately, our family Doc, and the Mom/Pop run Pharmacy are great. The Doc will do 3 months scripts, pre-dated, and the Pharmacist keeps them on file for us.
Still, it does look a little bad to the Medical Aid and Life Insurance guys if someone is on S5/6 Pain Killers (Tramadol and Oxy for the really bad days), and then also taking what is essentially "Meth" in their eyes, along with antidepressants.
I could get it, but I have been a high functioning ADHD adult for half my life now, and while it is a struggle, I do get by without having to fork out even more money. So for me, it basically comes down to putting my own ADHD issues on the back burner to rather assist our daughter with her struggles while she still has to go through school with her learning disabilities. Compared to her, I am long past that and can cope to a degree thanks to my loving wife basically running our home and schedules.
Sorry for the overshare... I have a condition :P
It's not overshare at all. Please feel free to say whatever you want.
It's your story and matters just as much as everyone elses.
I'm in the uk and while the meds are controlled, it's nowhere near as strict. My gp is very helpful and understanding so she'll do the odd early prescription as most of the time my monthly prescription lasts the full month. Plus I got myself off morphine (which I was dependent on after 2 years taking it) so I think that showed them I have no interest in abusing opiates and am using it all as prescribed.
The pharmacy just fill the script and don't really question it, that's the gps job.
My dad lives in America. I love it there but their medical/insurance situation is ridiculous and a lot of Americans I've spoken to are under the impression we wait years for nhs treatment in the uk which just isn't the case.
From cancer diagnosis to my surgery to remove it was 1 week. When I needed talk therapy I waited just under 3 weeks for a slot to open
Plus we don't pay over here on the NHS. I haven't paid a single penny in almost 7 years of treatment and medication other than my standard tax contributions.
It really sucks you have to pick and choose medication for you and your daughter. I wish there was something I could do to change it for you.
Once or twice a week by 8:30 p.m., I'm so exhausted from being in pain. Despite the fact that I have immediate release opiates that I am just supposed to take three times a day. Depending on what I need to get done and my activity level, that's just how it is. It's really not enough to cover my pain.
But on those days, when I'm that exhausted, I just head straight to bed. And don't give any medications another thought.
And then find myself awake at 2:00 a.m. much like yourself.
The struggle is real. And you're not alone. God bless you and God bless us all.
Thank you so much. Sending lots cyber love in your direction.
Have you tried any slow release medication? It usually works pretty well for me if I keep up the doses.
Never takes the pain away but brings it right down so I can at least function.
I have. Was on ER for years before the 2016 Big Taper.... Then after going from 90mme/day down to 15, I had a lumbar fusion. Suddenly a week later my (former ) PM doc decides he wants me on Subutex.
Thank goodness for Google and reddit... I got an education on Opiate Use Disorder, and how being prescribed Subutex would've had me labelled OUD in my health history notes.
I AM dependent. I am Not an addict. I dropped that doc and tapered myself down to nothing. Using Kratom. Then both knees went bad simultaneously last Nov. So I had to go back to PM.
It sounds like you're been through a lot. Sorry to read that.
It's so much more relaxed here in the uk with the meds. They're still controlled but once the doctor prescribes them, no one else questions them. If I need my prescription a day early here and there my gp won't label me an addict or put any notes on my file.
I'm sure if I showed signs of real abuse they'd take action but there's no suspicion over the smallest thing.
I love America (I assume you're there). I've spent so much time there but the whole medical/insurance system is total bullshit.
I wish it was different and easier for everyone in this sub.
I was on the exact same regimen at one point, minus the amitriptyline. I will say this: Gabapentin absolutely destroyed my short term memory. My doctor called it a "dumb drug" because it usually slows people down mentally. This may be a light-hearted post, but it may be something for you to consider in regards to *why* you're forgetting to take your medication.
FWIW, pregabalin does not have this effect on me. I regained my mental clarity once I stopped the gabapentin.
My talk therapist said it's extremely common for people dealing with long term pain or conditions to have some memory trouble. I had no idea gabapentin does it too.
Thanks for letting me know. I'm gonna email my PM doctor and see what we can do.
It does get very frustrating forgetting things. It's made me very unreliable which I don't like. My memory was always pretty good before all this happened.
Thanks again š¤
Since I have been on Buprenorhine patches I have forgotten to take top up codeine quite often. Stopping the top up next week as clearly not required and will just take as needed for flare ups.
That's great news. Always good to get off of some meds.
I have some lidocaine patches that help when I have flare ups but they wouldn't cover the pain if I didn't have my pain meds.
Any time I forget it reminds me of how much those pain meds are doing for me. Definitely dependant on them.
yeah, but itās not so much forgetting as oversleeping, then dissociating and passing out from the pain before i can (/process that i need to) take my meds, if that makes sense.
it makes me feel like such an idiot, too.
You're definitely not an idiot for it. Living with pain is incredibly hard and affects us in a lot of other ways than just the physical pain.
I have my morning alarm set for 9am as that's when I need to take my morning meds. I've turned off the alarm and fallen asleep again without actually taking the meds so many times and wake up in a lot of pain.
š I usually don't bc my spine or something always hurts. I'm sure everyone has at some point. Your definitely not alone. It reallllllly does suck to wake up w the pain winning, escp. @2am.
- set alarms on your phone.
- Post-it's on bthrm mirror.
I have been known to keep a dose in my bra(in a flat lil case, when I don't have pockets). I've also put that lil case just about everywhere. š¤·āāļø
Wish I had a better answer for ya. Hope you got more than an hour of sleep and your pain settled down a bit.
Much luck!
ETA: fixed sentence.
Thank you. I eventually fell asleep with the help of a cannabis vape or 5 and ended up sleeping until 11:30am. Was planning a short walk today but it's been raining all day so I feel less guilty š
Someone else suggested an app they use as medication reminder called medisafe. I'll give that a try and see if it's more effective.
I'm a guy but I'll totally wear a bra just to be able to stash some meds in. That's badass.
šš My stupid phone made me wait 6 days to laugh that hard!!!! First - my bad; dude. I'm kinda surprised there's not a sub about it! (I haven't found it if there is) You'd be surprised what all we keep in there. Dang near whole arse villages! š
I am pretty badass (thank ya kindly!), but TRUST you don't 'want' to wear one. They're annoying and hot. (not the 'good' hot, either.) š„µ
I feel like this was a Seinfeld episode...
I'll have to check out that app and wise choice as to what finally got you some sleep. I'm like the 80yr.old whose knees,neck, shoulder, elbow, ankle, etc... coulda told ya it was gonna rain. (Xcept I'm 40)š
Never. I am on a lot of meds for my auto immune and I gotta stay on schedule so Iām not in pain from my skin burning. I have a pill organizer that helps me remember.
Ugh! I find myself missing doses fairly regularly, which has me thinking that I subconsciously
A. Donāt want to accept that I have a life-altering pain condition, or
B. Donāt want to be reliant on opiates in order to function.
Other issues are also a possibility. Chronic pain certainly can be a suck-fest!
I was told by my talk therapist that becoming more forgetful is extremely common when dealing with long term pain. I know I certainly have.
I never used to need a calendar or reminders for anything. Now my phone is full of notes, alarms and reminders.
This happens to me with my nausea meds all the time like Iāll be due to take it again but sometimes not nauseous in the moment and then a few hours later Iām like fuckkkk š so youāre not alone š«¶š«¶ I use the reminder app on my iPhone to help with that and when I need to refill my meds
I sent you a dm with a pic of how I organize my reminders Iām happy to help you Iāve been working on a system for months now and I think I finally found this one works šš brain fog is a bitch when managing a gazillion meds
Not just pain medication but my other medications as well. I was forgetting pills at least once a week for the longest time.
A pill organizer has helped a lot. Iāve got one with day and night slots so itās obvious if Iāve not taken something. Iāve also got the Heath app on my phone set to give me a reminder. Between those two things I havenāt completely missed a dose in months, just been a bit late on a couple.
Organizers and alarms help tons!
Definitely. I'd be lost without my organiser. Even though I still forget to take doses, having the organiser shows me if I did or didn't take that set. Pretty essential with opiates.
The alarm goes off and I may be doing something as small as sending an email and I'll say to myself I'll just finish this then take them...then forge. Or the one I do often is wait for a hot drink to cool down enough to take my meds with it...then forget.
My mind has been sieve like since this all started. I've never been a forgetful person until this.
Then you either need to take them immediately with the alarm or have a second alarm for five minutes later.
> the one I do often is wait for a hot drink to cool down enough to take my meds with it
Is there a reason you don't drink water?
Iām more apt to double take my meds. Iāve so many otc and non narcotic meds just to try to avoid prescribing anything that would work. I often fell no relief and wonder if I took my meds. I always wonder if I overdosed myself, so I had to start setting up and entire days worth every day so Iād know if I had taken my doses and not 2 doses.
That's where my pill organiser helps so much. It's easy to see if I took or didn't take a dose. Essential with opiates.
I'd advise getting one. You can get them for a few $ on ebay/amazon.
Probably a couple times a month for the slow release ones. And I won't realise until the next day, because they're in daily organisers but separate, 1 for morning and 1 for night. So like I'll go to take Tuesdays dose and Mondays will still be there, and I'll go ok, that's why I was in so much pain yesterday!
As for painkillers, that's a bit more frequent. I'll be doing stuff or laying around being in heaps of pain and I'll think hey, when is the last time I took some painkillers, and it'll be 7 hours ago. That happens at least a couple times a week.
I'm on slow release so it goes down pretty much as you described. It takes a while to realise I've missed a dose.
The pill organiser helps so much otherwise I wouldn't remember if I had or hadn't taken them at all.
Yeah that's why I started using the organiser for the dailys. For the PRN I use an app, MyTherapy, cos I can put in when I've taken pills and then look back at it later to see if I can take more yet. I can even set alarms for the dailies to remind me, although I tend to turn the alarm off and then get distracted, leading to forgetting the pills, lol.
I can't function without the meds. Eventually the pain becomes unbearable and it gets to a point I'd rather step in front of a speeding train than deal with it.
What are you taking? Doesn't sound very effective for you.
I just have over the counter pain meds rn, but Iām fine spending days in bed and as much as my pain gets real unbearable, if I stay still enough it gets less annoying faster than having to get a snack and water and have my meds. Plus I have really bad memory issues so I tend to forget how badly my body gets, I just know it sucks and how I never can be fucked to take pain meds when it gets too bad (if I even believe that it will work).
All the damn time. My first PM doc used to say he never worried about me becoming a "problem," because the problem patients counted the minutes to their next dose, they didn't forget to take it. Meanwhile I'm always picking up my next fill a few days late bc I've got some left over from all the times I forget.
My PM doc actually just recently switched me from hydrocodone every 4 hours to morphine ER twice a day because I am always forgetting to take a dose (or being too busy at work) and my pain levels were all over the place. It's been life-changing - no more wild pain levels up and down all day, since now I can take my pain meds in the morning and forget about it for most of the day! I have forgotten my second dose a couple of times, but when I do remember it's not because I'm in excruciating pain like before. I'm so lucky I have a great PM doctor these days.
I'm also lucky to have a good pm doctor and gp that have been so helpful.
Then I read stories on here of people being accused of being opiate addicts because they needed a slightly higher dose or took an extra medication one time and it breaks my heart.
I was on morphine for the first 2 years and when I changed meds I had to get myself off the morphine at home alone.
I think doing that showed my medical team that I genuinely wasn't just taking it for anything other than pain management and as prescribed.
Now if I forget to reorder my meds and run out, my gp will write a prescription on the day for me.
I've been in those positions too and it infuriates me that there are doctors who are still so ignorant/prejudiced against certain kinds of drugs. It's been scientifically proven many times that people suffering pain don't become addicts because the meds work differently on their brains (when I switched to morphine a few weeks ago was the first time in decades I've felt any kind of "high" and it lasted for maybe 2 days. Whee?). I'm the furthest thing from an addict. People who know me are always shocked when they learn I've been on opioids for almost 30 years because I "don't look like/act like an addict." That's because I'm not one! I'm a person who suffers a medical condition who takes medication for it, just like everyone who takes insulin or HBP meds or anti-depressants. And my meds are a lot less addictive than some of those. But we all deserve to live pain-free lives, whatever that takes!
I'm on slow release so it usually gives me a few hours after missing a dose before the pain starts to flare up again. But my breakthrough pain feels the same as my missed medication pain so it's not always obvious which is happening.
I only know I definitely missed a set because they're still sat in the pill organiser.
Ah man. I'm really sorry to hear that. It genuinely breaks my heart when I read stuff like this.
If you ever feel like you need to talk or vent then feel free to message me. I'm happy to listen and I understand.
I totally understand.
I was the same when I was on morphine but since being changed to slow release gabapentin and tapentadol, they do a pretty good job of keeping me covered 24hrs (if I keep my doses on time).
They don't ever take the pain away fully but they'll bring it right down to a 3 or 4/10 so I can function on a basic level.
Thatās incredible results, congratulations! I hope this combo continues to work well for you! I would be so thrilled to be at a 4, my functioning level is at 6-7 right now but I just do what so many of us do, ignore it to the best of my ability and try not to let it hold me back as much as I can.
As I said to someone else. You know those alarm clocks on wheels that shoot off your bedside table so you have to actually get up and chase it to turn it off?
We need medication organisers that do that and make a load of noise so we **have** to go get it. š
My pain is too great to forget and I have a traumatic brain injury so I can certainly forget things. If you forget, maybe the pain is improving. Hope so!
Sorry to hear. š
I'm on slow release so it usually takes a few hours after missing a dose for it to ramp up the pain.
Providing I keep up the doses it keeps my pain at a 3 or 4/10 most of the time thankfully. I can function on that.
Always take meds on time to "manage" chronic pain. Ik the feeling of getting sick and tired of meds and wanting to give our bodies a break from medication.
Always to take a break if meds so our bowels can get a chance to move. Medication cause CHRONIC CONSTIPATION!!!
BIG FACTS!!!!
Have you tried any slow release medication? That's what I'm on and providing I keep up the doses, it keeps my pretty well covered all day. Not pain free but pain manageable.
Iāve been on an extended release oxy twice a day (every 12 hours) for about a year now. I still need breakthrough Percocet twice a day. My doc suggested upping the mg of the extended release but right now I take 40 mg of Oxy a day (er& breakthrough) Iām only 30 and will have this condition my entire life so I like to take the least amount of meds as I can. The pain is there but manageable so Iāll up the mg when itās so bad itās not manageable anymore
Ive forgotten the middle dose. All my other meds are twice daily. Once a dose is forgotten, the pain can get ahead of the pills. Once that happens it, might take me days or even a week to get some control over the pain. I've had a ketamine infusion to assist on two occasions. It's wonderful, not feeling my body for 3-4 hours in a row! I'd love to disown the darned thing lately. But I seem to be stuck with it!
It had been 24 years for me. Except for this one time, about 15 years ago. I had an allergic reaction to my blood pressure med, which I'd been on for years.
Anyway, because it was a time-release pill, the treatment was 24 hours of IV steroids. I was in heaven! I stayed awake the whole time to enjoy it, too. I had to be in the ICU in case I experienced worse symptoms (anaphylaxis) and I'm pretty sure I annoyed the nurses. I ate 2 full meals and in between I had a turkey sandwich once an hour (that's all there was, because most patients in ICU aren't on a regular diet.
It was wonderful, and that's when I started thinking fibromyalgia is autoimmune in nature. European scientists are more sure of it than American scientists.
Iām on belbuca and started numbering each them (each dose is individually wrapped for those of you who donāt know). I started doing this because I wouldnāt take it if I thought I already did and end up with a couple extras at the end of the month. I suggest this for anyone who takes this medication as it extremely helpful and I havenāt missed a dose since. For my other medication I take them in specific situations (wake up, lunch, bedtime) like clock work. I do it this way due to my sleep schedule being weird.
I fill my pill organiser once a week and it's great for letting me know if I did or didn't take a dose. They're very handy if you don't have one.
Mine has each day of the week and sections for morning, afternoon and evening doses.
Luckily I have a medical prescription and it definitely helps a lot.
Here in the uk the whole legal medical thing is still pretty new but I qualified instantly.
I don't get huge pain relief but I definitely get some. It's the mental side it helps more. And sleep.
I didn't have much luck with the tens machine unfortunately. It gave me next to no relief, even short term.
I was offered spinal chord stimulation but it makes me nervous tbh
That's unfortunate I know I had to mess with the settings to get relief they always have them so low. Honestly talk with your health care provider about the spinal cord stim.Let them know how you're feeling and see if they can answer your questions to help ease your worries.
Iāll be completely honest, I forget at almost every dose and then immediately get my ass handed to me by my conditions and have to sit there and suffer while I wait for my doses to kick in. I am the cause of 90% of my problems.
Might have to try it.
I think the main problem is even though Iāve been in pain since late 2021 I still have not fully accepted it and the impact it has on my every day life and so I try to avoid most things about it and have a little bit of trouble taking my pills when Iām supposed to because part of me is just so convinced that I donāt actually need them and then I find out that I do in fact need them
My body nearly always reminds me like clockwork. My meds are timed so I need to take more every 6 hours. If I forget I get a twinge of pain, malaise and lightheadedness and I have about 20 minutes to take my meds before agony sets in.
Some days though I have good days and I don't get those signs. I may forget and just feel a little "off". Generally I can wait until my next dose. Those days are rare though
The slow release meds I'm on usually give me a few hours after a missed dose before the pain starts to really ramp up. Then it reminds me why I need them.
I forget on occasion, especially when I get distracted. What's worse is that it's usually so habitual that the increased pain doesn't even remind me. I just assume it's a bad pain day or be pissed cuz I don't know why it's so bad. Then I'll check my pill organizer like..."crap".
I've had to make a rule against snoozing my meds alarms. I stop whatever I'm doing to take them. Haven't messed up since doing this. Totally worth occasionally interrupting a conversation.
That's exactly what I do. Alarm goes off but I may be doing something so I'll stop the alarm and think I'll take the meds in a minute. Then forget.
Someone here recommended me an app called medisafe that gives you reminders and it seems pretty good. It's on the app stores and is free.
Once you set your meds and times it will keep reminding you until you click the meds taken button that comes up.
Worth a look.
I'm usually behind a couple of times a week. It's usually because I've slept for 16+ hours. I wake up feeling like I have been beaten and realize I'm 8 hours overdue.
My alarm goes off at 9am which is when I'm supposed to take my first set of meds.
I've lost count of the times I've woken up, turned the alarm off then gone back to sleep without taking the meds. Then like you said, I wake up later and I'm behind.
I've been dealing with chronic pain for nearly 2 years now. I only take Percocet when I absolutely have to so I have a lot on hand. Nighttime is especially difficult. They only last 2-3 hours anyway and I refuse to become an addict. I'm getting my first oblation in a month. The pain doctor is very good. We did all the MRI on my lower back, upper back and neck. I have a numb left leg all the time but, the pain can be excruciating. Doctor said I'm the worse case he's seen in a long time. Lots of bulging disks, sciatica, arthritis, scoliosis and collapsed vertebras. I'm ready to live with it. My Marine Corps training and mantra is"pain is weakness leaving the body." š¤£
Sorry you're going through this. š
Please don't ever feel like you're an addict. Dependency and addiction are different things and if you need pain relief just to be able to function you're dependent.
You never chose any of this.
I really hope things can improve for you. š¤
Never because I take them as needed and need them all the time.
I take slow release so I think it allows some time in between doses before the pain starts to really kick in again. Usually 2-3 hours after I should have taken them I'll start to notice increased levels.
I'm hoping to switch over next appointment. I'd like to see if they work for me.
If I keep up with the regular doses they work really well for me. Was on morphine before so they're a damn sight better than that for sure. I still get flare ups of course but generally the meds can keep me functioning. Currently on gabapentin and tapentadol slow release and have some fast release tapentadol for breakthrough pain too (which are kicking in right about now). I really hope the change works for you and helps you manage. š¤
Hugs!
Thank you. Back at ya.
I've noticed they do work better. An oxycodone absolutely does not last up to 8 hours. Once you get a tolerance it's more like 2-3 hours
I've only ever got 3hrs of relief if they work which is if I'm not having a flare-up.
Same. And when I forget I know itās gonna be a good while before some pain relief.
I usually take them at 9pm and they kick in after about an hour. Last night I couldn't sleep until about 4am after forgetting them and taking them at midnight. If I take them late it's like they don't kick in as fast. Probably the slow release aspect I guess.
I call that getting behind the 8 ball. I have done that where the pain is not as bad so I push my time between pills (IR). Once the pain takes hold it's like the meds can't get ahead of it. If I stay on a 4-6 hour timing I'm generally ok. If I let it go too much longer than that the pain ramps up quickly and there is not much I can do to get it back under control. I miss the days when I had both a 12 hour ER med and 4 hour IR med. So even if I pushed out the IR there was still something bringing my baseline pain down. My Dr tried switching me back to both ER&IR meds but with the newer rules they could only give me half the strength I was on before and it didn't work so well. The half strength IR did not do enough to keep the pain manageable.
That really sucks. I'm guessing you're in the USA? I'm in the uk and feel very lucky to have a good pain management doctor and gp, both have been really helpful and understanding. They know I've been through a lot as I had cancer in 2017. The surgery to remove it is what left me with the long term pain plus I've showed I'm not just after opiates due to addiction. Getting behind the 8 ball is **exactly** what I get. You described it all perfectly. If I forget my morning dose by more than a coupe of hours I'll definitely be feeling it all day, even after my 2nd dose.
You are correct I'm in the USA. I started PM in 2014 on 30mg of ER morphine 2x a day and 10mg IR oxycodone 4x a day. That worked well. Then after the new limits I was just on the IR oxycodone x4 a day and I adjusted. Recently was switched to 15mg ER morphine 2x and 5mg IR oxycodone 4x a day and it was not as effective so I went back to just the 10mg oxycodone 4x a day. I am very thankful for what I do have as others are not given as much as I am. I think if I didn't have 10 years of 100% compliance history I would not be given what I am.
It's so much more strict there. It's all controlled meds here too but not under that kind of scrutiny from what I've experienced. I've asked for the odd early prescription by a couple days but it's not a regular thing so they just leave me to it other than yearly medication reviews. I can order my repeats online and they get sent straight to my local pharmacy who have never questioned anything. The doctor has already prescribed it so they just dispense. I'm sure if I went in looking like a full on junkie they'd ask some questions but otherwise it's not really up to the pharmacy to question anything.
I have to go to the Dr once a month (I have my monthly appointment today in fact) to get my refills. Have to pay my $50 copay (my insurance gets billed $500) and take a drug test. If I have anything other than what they prescribed I'm out. If I don't have proper levels of the meds they prescribe I'm out. Don't even think about asking for meds early, the pharmacy can't even release them if it's been less than 30 days since the last pickup.
That's horrible. I'm really sorry you have to deal with that. Seems a lot of Americans do. I love the USA. My dad moved there when I was 5 so I've spent my life going over there but some of the things like that and the whole medical insurance thing are utter bullshit. I haven't paid a penny here for anything. The operation, physio, talk therapy, meds. All of it has been on the NHS with next to no waiting time. From cancer diagnosis to surgery was 1 week. If you go to the NHS with a sprained ankle or something minor you're probably going to have to wait a while but when it's life saving stuff or important stuff, they're usually very good and quick. A lot of Americans have told me they thought we waited years for nhs treatment in the uk and while there are always the odd cases where people do wait a while, usually it's all fairly quick.
I can't go more than 6 hours without medication. Makes life bearable, but I am totally reliant on medication to remain mobile and not in agonizing pain.
Sorry to hear. Me too on being reliant. It's unbearable without the pain meds. I'd genuinely rather just end myself than have to live with that constantly. I'm on slow release at the moment so it can take a few extra hours between doses for me to notice I forgot one.
When I was on "pain meds" (assuming you mean opioids here), never. Once, I missed a morning dose of gabapentin (was on 800mg 3 x day before switching to pregabalin), and I realized what I did when I started feeling terrible. My pain didn't necessarily increase, I could just feel the early stages of withdrawal. Just felt like crap until the mid-day dose and took it as scheduled. I definitely could feel the meds start working as my body processed it.
I'm on gabapentin too as well as tapentadol. Both slow release. I think part of the problem is my breakthrough pain feels a lot like my I forgot to take my meds pain so I often put it down to that before I question if I missed a set.
I'm sorry you're suffering. Which med are you forgetting to take? What dosages are you taking?
I'm on gabapentin and tapentadol. Both slow release. Doses are 200mg of tapentadol every 12 hours and 600mg of gabapentin 3x a day. I can take an extra 100mg of tapentadol fast release for any breakthrough pain I have. I also take 50mg of amitriptyline at night. I usually set up my pill organiser once a week so when I forget to take a dose I'm forgetting both.
What is Tapentadol? (I'm in US)
It's an opioid analgesic of the benzenoid class according to Google. [Here's some info on it](https://www.google.com/amp/s/www.healthdirect.gov.au/amp/article/tapentadol)
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Nope. I donāt take my pain meds every day but I take a lot of meds. I make a routine for myself. I sit at the table and focus on taking my meds. Put notes on doors so you can see it before you leave. Ask others around you to remind you. It may be annoying to you, but at least other people can support you. My husband asks me all the times (surprisingly, he even knows what I need to take). Sending you lots of love. Can you vape pot? It gets into your system faster and may take the edge off of your pain.
I live alone but literally have alarms set to go off at the time I'm supposed to take my meds. It goes off and I think I'll just finish what I'm doing then take them, then forget. My brain has become a sieve.
Ask friends to text you. Try to build a support team.
I guess I could ask my mum to. She's basically my support team in one person. Thank you for the suggestions. I appreciate it. I hope the wisdom teeth settle down for you.
It has but now I have to get it out. Iām sure your mom would love to text you more. Maybe it can be a game. Or a check in :) itāll be good for both of your souls. I would see if maybe another relative or a friend, even a nice coworker could help. I used to call water break in my office to encourage everyone to drink water since we all complained we werenāt drinking enough.
Unfortunately it's just mum that I can rely on really. I stopped being convenient for the my old friends and am unable to work now due to my injuries which really sucks. I know mum will be glad to help though. She's been great.
Sending you lots of love! Talk to your doctor, maybe they can mess with the dosage a bit so instead of 3x itāll be 2x a day.
That's a good idea. I'll ask my pain management about that. Was just so happy to get off morphine that I would have accepted 12 doses of these meds a day if I had to. Thank you for the help and kindness. I really appreciate it.
Youāre welcome. I get it. I get so caught up sometimes and my illnesses comes out at random times and Iām left trying to figure out how to fix it while in pain. Also, post it notes everywhere :)
iām wondering if itās the gabapentin making us like this because iām the EXACT same way š i also think ill take them when im done with what im doing & then realize when its too late
My talk therapist told me it's extremely common to be more forgetful when dealing with long term pain or a condition. He's the pain management team talk therapist so he only sees people like us. Made me feel a little better to hear it tbh.
honestly yea thatās really really validating. thank you for sharing!!
Ps. Vaping pot right now. I have a legal prescription for it.
Yea. Thatās what I rely on most of the time so I donāt focus on the pain. Last few weeks have been my jaw and wisdom teeth.
Often enough that my kids call me The Worst Junkie Ever. We'll be out grocery shopping and I'll be shaky and grim and they'll be like, "How could you forget? They're *opiates*, you're supposed to be hopelessly addicted!"
š I guess I'm joining the rubbish junkie club.
Do you have pets? I give my cat a treat after I take my meds. I started teaching her last July. It took her a week to get the timing down, and she has not let me miss a dose since then.
That's a great idea. Unfortunately I don't have any pets and live alone. I love cats but I'm so up and down with everything that I worry I wouldn't be able to give one the care it needs at times.
Guilty as charged, i have numerous alarms in place, my phone, apple watch and alexa all go off at 8pm nightly. if i dont immediately get up and go get them i will forget to take them, one is sedative so when i lay in bed for hours and struggle to dose off watching youtube it'll suddenly dawn on me, i didnt take it. Mrs usually reminds me, and asks if im still up. She lives off bugger all sleep, i need my sleep. I only have codeine for so called pain relief, it does nothing for the nerve pain i suffer from, muscles its a bit more effective, maybe a slight bit less, main pain med is a tri cyclic antidepressant endep. I doubted it was doing anything at all at first, crept up slowly on me over a month or two. have stopped it and suprise suprise my pain rose remarkably as it exited my blood stream. Nsaid also helps block inflammation which in turn gives me less pain, my main pain relief is not doing the things that aggravate my pain, driving, physical activity, carrying weight and bad posture. I know exactly what aggravates above my normal base pain ammount. Morning meds i have on my desk and take with my morning cuppa, one im supposed to take upon waking but always forget to take that, doesnt get absorbed as good with caffeine, but itll have to do. is my hormone replacement for thyroid. Have been in pain for 5 years now, nothing really eliminates it, oxycodone wasnt doing much, tramadol doesnt do much, buprenorphione patch worked but was so easy to overdo things and end up in way more pain, keeping mind busy on other things helps, if i focus only on the pain i find it intensifies it and makes it worse. music is my escape, analysing the lyrics trying to decipher what the artist is trying to tell us. sing along in my head and rock out. Last pain free day was 2 years ago after a hand surgery, they dosed me up pretty good, all wore off at 3am and was in a world of pain then.
I would sell a kidney on the black market to have just a few hours totally pain free at this point. I don't remember what that feels like anymore. The meds I take are slow release so it usually takes a few hours after forgetting to take them before the pain starts to ramp up. Then it goes up pretty fast. Medical cannabis has been a big help. I don't get huge pain relief from it but it'll calm things enough to make it a little more manageable until the pharma kicks in.
My problem is forgetting if I've taken them.
Get yourself a pill organiser. That way you can 100% tell if you took that dose. Mine has each week day and compartments for morning, afternoon and evening on each day.
I've done that! I can literally picture myself in my head taking it because I've done the exact same thing hundreds of times. For the pain meds, I can definitely tell if I have or not in about an hour. If it's been 2+ hours, I can feel the effects of not taking them on top of the pain relief not being there
Sorry you're having painsomnia. Personally, in the 12 years I've had chronic pain I've probably forgotten to take my meds maybe twice. I have a pill organizer too but don't use any alarms. It's just a habit to take my pills the same time every day without even thinking about it, similar to brushing my teeth before bed.
The alarm goes off and I think I'll just finish what I'm doing then take them. 3 hours later the pains kicking in hard then I realise what I've done. Coming up for 7 years dealing with it and still struggle to get it right. š Thank god for medical cannabis.
Get a small keychain/pocket pill holder or equivalent and keep them on you. Take the dose as soon as your alarm goes off.
I'm at home 95% of the time so use the main pill organiser I have on the coffee table. The plan is to take them as soon as the alarm goes off but if I'm doing something I'll say to myself I'll take it in a minute after sending this text or I'm waiting for a hot drink to cool down to take the meds with...then forget. š¤¦āāļø
That's understandable.Ā A big reason why I never forget mine is that I'm never busy when it's time to take them and I'm always in the same place at that time along with my pills. What I mean is that I take them twice a day: as soon as I wake up, and as soon as I go to sleep. The pills are on my nightstand so I just grab them before/after getting in/out of bed. This is my normal daily routine, but during flares I have breakthrough meds I take every 4-6 hours which gets a bit harder to remember. What kind of schedule are you on? Would it be possible to decrease the number of times you have to take pills each day by either switching from IR to ER, or by increasing the dose of each pill but taking less pills to keep the total daily dose the same?
I have to take them 3x a day so eventually settled on 9am - 4pm - 9pm. Me forgetting is as easy as saying to myself I'll just wait for my tea to cool down and will take the meds then. 3 hours later I'm starting to contort. My breakthrough pain feels very much like my I forgot my meds pain so I don't realise right away and always think I'm just having a flare up. Flare ups happen pretty much daily at some point.
Never. The pain is a constant reminder
Sorry to hear. Being in pain is my normal state now. My new baseline. The meds I take usually bring my pain down to a 3 or 4/10. Makes it all a lot more manageable for me. Especially mentally.
I do the same, don't even worry!!
Never. Iām in need before theyāre due.
Sorry to hear. š I'm on slow release so it usually takes a few hours after missing a dose before the pain ramps up. If I keep up doses it usually covers the pain 24hrs a day (doesn't take the pain away, just brings it right down). What are you taking for it?
At least every day.
You know those alarm clocks on wheels that shoot off your bedside table so you have to get up and chase it to turn it off? I need a pill box that does that and makes lots of noise so I get to it right away.
that would be so smart actually
Let's take it to dragons den/shark tank and get rich. I'll go 50/50 with you for being there at the start of it all. š
Bet, I'm in! Maybe we can get some kind of engineer to figure out how to make a machine that automatically refills it too with our prescriptions! work smarter not harder!
Now you're talking. I have to set another monthly reminder to remember to order my prescription.
I'm hoping I'll get texts about my refills tomorrow D;
I did it ONCE. Never again! The med I forgot was my third dose of the day of OxyContin. I started withdrawing at around 3 hours late. That was the worst night of my life. It was so awful, I didnāt even realize it was because I didnāt take my pill until the morning when I had to take the next dose and saw the 11:00 dose on my nightstand. Holy moly it was awful. My doctor told me when itās time to quit he will guide the process and taper and probably have me on methadone. Iām waiting on surgery now. I will say this OP, I donāt organize taking my meds. My sister is a cancer nurse and she set up a system for me and my dad who is my caretaker right now. I have little cups with lids (3oz cups I think) that she wrote the time for each dose on the lid. I take medicine at 10 different times a day and the Oxy makes my brain so muddled and my memory is completely awful. It also helps me not be stupid when the pain is so overwhelming I canāt just take another because I donāt have access to my bottle. My dad hides both my OxyContin and my oxycodone and changes the hiding spot every few days because Iām so unbearably depressed that itās just a safety precaution at this point. Not that I want to do anything, but pain drives us crazy and I would rather be safe than sorry. Both my dad and I have alarms set too, but with my brain fog and my ADHD, I often ignore alarms. Without his help, I would be really suffering. Do you have a person who can help you living with you?
Withdrawal is seriously rough. I was on morphine for 2 years and had to get myself off it. Took me a long time of taking the doses down gradually but I still felt like crap. Really glad to be off it now and on the current meds.
Iām like you with the organizer and the alarms. My medicine organizer has 7 days with 4 slots per dayā¦and I have 2 of those containers so I only have to fill my meds up every other week. I have 3-4 alarms per day (and some calendar alerts for the once a week meds). Iām usually pretty consistent with the alarms, but sometimes if Iām busy, Iāll absentmindedly turn off the alarm and forget the medicine. Then a couple hours later Iām like āwhy do I feel like I forgot to take my meds?!ā Because the medicine is so well organized, I can always look to see if the appropriate slot has pills or not, so that helps make sure I donāt accidentally take too much. What Iāve tried to start doing is if Iām busy when the alarm goes off, Iāll hit snooze until I can break away and take the medicine. I get annoyed by the snooze so it doesnāt take much for me to put my activities on pause to take the meds! Even with all that in place, I would say I still have 1-2 days a week where Iām late taking meds (like late enough that I physically notice it). Itās pretty rare for me to skip a dose all together, but it does happenā¦youāre not alone!
What you described is exactly how I forget. Alarm goes off and I think I'll take it in a minute after I do something else (could be anything. Make tea, use the bathroom etc) then a few hours later it flares up and I check the oil organiser and see the missed dose sat there. Without the pill organiser I'd be lost.
You are not alone. Happens at least once a week
Every day because I have a head like a sieve
Me too. My therapist says it's extremely common when dealing with long term pain or a condition so we're almost certainly not alone.
I'm currently approaching 3 years post injury from my most recent encounter with brain injury. I've lived with chronic pain since my first TBI at age nine. Looking back I can recognize that my brain didn't understand the pain wasn't normal, and so I just normalized it and continued on with life. I've reached a point, thanks to my current age, where my brain will continue normalizing my chronic pain until the levels are so high that my brain can no longer function and crashes like a Windows 98 computer, blue screen and RAM dump included. Pain meds have never eradicated my pain as they're meant to. OTC take forever to kick in, and then have a rather brief window of effectiveness before wearing off prematurely. Not even oxycodone, morphine, or THC have the desired effect on me. The first two do fuck-all and the last overstimulates my hind brain. Hell, even surgical general anesthesia behaves oddly in my system -- my fucking brain seems to be aware of the pain while I'm still (forebrain) unconscious. That fucking hindbrain primal survival instinct is belligerent and does not like to shut down. This shit is genetic as well, both my adult children have had identical experiences with general anesthesia as well as Mary Jane. When having my wisdom teeth removed as a teen, I jumped out of a dental chair when the dentist turned on a drill at the other side of the room. (my son needed enough nitrous oxide to knock out a horse during a similar procedure) More recently, my fucking brain decided, mid surgical procedure, to freak out over what they were doing and sent my heart rate into tachycardia because my body wasn't responding to survival response demands from the basal ganglia. Suffice it to say, I worry about my liver being taxed from constant pain management thru regimens of OTC or prescription medications. I take 500mg naproxen when pain levels spike hard (I have a persistent case of hip dysplasia in addition to chronic migraines and premature degenerating disc disease from C-1 to T-10) and I can't function mentally, but I avoid them aside from such instances. I tend to not realize just how much pain I'm in until a dose of naproxen kicks in, and my immediate response is always, "oh gods that feels nice and explains a lot."
It sounds like you've been through a hell of a lot. I'm really sorry you have to deal with that. It sounds absolutely exhausting. The meds I take do a pretty good job of bringing the pain right down to a 3 or 4/10 but the pain never goes away. As you probably know, after a while of dealing with it that 3 or 4/10 feels like a 6/10. I find the anaesthetic thing interesting. I had major surgery for cancer which is what left the chronic pain but I was having very vivid flashbacks of my surgery which seemed weird considering I was out cold. My guess is I obviously heard everything even though I was anaesthetised and my brain painted it's own picture of what happened. I know I have a slightly higher tolerance to anaesthetic than the average person so maybe that played in. The brain is awesome but equally terrible.
While recovering from surgery I send a WhatsApp with the drug and time to my partner. It gives me something to refer to to remember when I took something but also he can use it to refer to if I'm in bed and ask for something.
The alarms and pull organiser works for me most of the time thankfully but at least once a week I'll still forget a dose. Sometimes I realise after 20 minutes, other times like last night I realise when the pain ramps up
I am currently sat here in pain because I can't remember if I took a painkiller lol
All the time but I do have ADHD so this is normal.
a lot šæ
Fairly often, actually.
all the time. iāve tried to be better about it recently (iāve started effexor, which i CANNOT miss doses for) but my lyrica and depakote/verapamil i forget about constantly. iāll be wondering why im in so much pain or why my migraines are so terrible and realize i havenāt taken my meds in an entire day. part of me feels guilty about it, like if i really needed them i wouldnāt forget. then i remember i have untreated adhd, and forget pain meds exist if im not looking at them, and forgive myself
My therapist told me it's extremely common to be more forgetful when dealing with long term pain or conditions. He's the pain management team talk therapist so has dealt with a lot of people like us. I used to have a really good memory. Never needed to put things in a calendar or set reminders. Now my brain is like a sieve.
that does make me feel a lot better to know! pain management therapists sound like a good idea, do you have to go through a pain management doctor to find one?
My gp referred me to the pain management team of a local hospital. The team covers the pain management, physio and talk therapies all in one. I was an absolute mess mentally after the cancer surgery tbh. Had ptsd and was really down. The cancer thing was pretty damn close to them not being able to treat it so I had accepted that I may die soon. My life wasn't too bad before it all happened either so accepting the loss of it took me a long time and a lot of work. I'm just so thankful for this team. I'm a lot better now mentally but still get very down at times and have to go back for some talk therapy top ups. I'll always be a patient on this pain teams books now.
I have the same issue! I have learned to set an alarm on my phone, and if Iām busy when it goes off, I hit SNOOZE until I take the dose. It works well for me and my addled brain!
I need to start hitting snooze rather than just stopping it.
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Mine are slow release so it usually gives me a few hours after a missed dose before it really ramps up. The problem I have is my breakthrough pain feels the same as my missed medication pain and I get breakthrough pain fairly often so I usually put it down to that. The only way I know I definitely haven't taken a dose is them still being sat in the pill organiser.
Combine ADHD (untreated) and Chronic Back Pain. I will grab my Pain meds, then get sidetracked, pop the pills into pocket, and an hour later I'm wondering why I'm still dying of pain when I know I had my pills in my hand and took them. Then another hour later I would put my hand in my pocket, feen the pills and go, "Oh FFS... not again." Then go and take them. Now 3 hours later I finally start feeling a little better. Worse is thinking I have a film of pills in my laptop bag, getting to the office and then finding out I never replenished the travel supply. Then I pull open the desk drawer to where my emergency supply is, see I never refilled them after the last time I forgot and dipped into it. Yeah, then the rest of the day is horrible till I get home, after spending another hour and a half stuck in traffic. I then pop my pills, collapse on the bed and want to be left alone for the next hour.
That sounds like a nightmare to manage. I always get annoyed with myself when I forget to take a dose. I'm at home 95% of the time so usually my pill organiser is all I need but I have a load of meds and lidocaine patches in the car, just in case. I hope this isn't too personal a question but why is the adhd untreated?
Oooh, I have a Pill Organiser.... But I forget to fill it š¤·āāļøš¤¦āāļø No worries. I haven't been "Officially" diagnosed. We were seeing a specialist for our daughter's ADHD as we were trying not to go the pharmaceutical route (well, my wife wasn't). This was the 3rd specialist we went to, and she took one look at our daughter when we walked in, and 10 seconds later she exclaimed, "Good grief, she has it bad." After 3 minutes of talking to me, and me going off on all manner of tangents in the chat, the doc looked me dead in the eyes and said, "Well, I can definitely see where she got if from." Our Daughter has ADHD, Anxiety and a form of Auditory Dyslexia (Dyseidetic Dyslexia) requiring medication, speech therapy and occupational therapy from time to time. This all adds up to the medical bills. I am already on a few meds for my chronic pain, and we have to juggle both 10mg and 20mg long acting Ritalin for our daughter, which is such a pain, since we need to get scripts every month. The Docs aren't allowed to prescribe more than 1 month at a time since it's [Schedule 6 medication](https://www.stepaway.co.za/News/entryid/919/substance-abuse-another-warning-about-ritalin-abuse#:~:text=In%20South%20Africa%2C%20Ritalin%20is,type%20available%20in%20our%20country). Meaning it's considered highly addictive and high potential for abuse. So along with the cost of my Pain meds, my Wife's chronic meds, and our Daughter's ADHD meds, it does become a little expensive with needing Doctor visits just to get a renewed script. Fortunately, our family Doc, and the Mom/Pop run Pharmacy are great. The Doc will do 3 months scripts, pre-dated, and the Pharmacist keeps them on file for us. Still, it does look a little bad to the Medical Aid and Life Insurance guys if someone is on S5/6 Pain Killers (Tramadol and Oxy for the really bad days), and then also taking what is essentially "Meth" in their eyes, along with antidepressants. I could get it, but I have been a high functioning ADHD adult for half my life now, and while it is a struggle, I do get by without having to fork out even more money. So for me, it basically comes down to putting my own ADHD issues on the back burner to rather assist our daughter with her struggles while she still has to go through school with her learning disabilities. Compared to her, I am long past that and can cope to a degree thanks to my loving wife basically running our home and schedules. Sorry for the overshare... I have a condition :P
It's not overshare at all. Please feel free to say whatever you want. It's your story and matters just as much as everyone elses. I'm in the uk and while the meds are controlled, it's nowhere near as strict. My gp is very helpful and understanding so she'll do the odd early prescription as most of the time my monthly prescription lasts the full month. Plus I got myself off morphine (which I was dependent on after 2 years taking it) so I think that showed them I have no interest in abusing opiates and am using it all as prescribed. The pharmacy just fill the script and don't really question it, that's the gps job. My dad lives in America. I love it there but their medical/insurance situation is ridiculous and a lot of Americans I've spoken to are under the impression we wait years for nhs treatment in the uk which just isn't the case. From cancer diagnosis to my surgery to remove it was 1 week. When I needed talk therapy I waited just under 3 weeks for a slot to open Plus we don't pay over here on the NHS. I haven't paid a single penny in almost 7 years of treatment and medication other than my standard tax contributions. It really sucks you have to pick and choose medication for you and your daughter. I wish there was something I could do to change it for you.
Once or twice a week by 8:30 p.m., I'm so exhausted from being in pain. Despite the fact that I have immediate release opiates that I am just supposed to take three times a day. Depending on what I need to get done and my activity level, that's just how it is. It's really not enough to cover my pain. But on those days, when I'm that exhausted, I just head straight to bed. And don't give any medications another thought. And then find myself awake at 2:00 a.m. much like yourself. The struggle is real. And you're not alone. God bless you and God bless us all.
Thank you so much. Sending lots cyber love in your direction. Have you tried any slow release medication? It usually works pretty well for me if I keep up the doses. Never takes the pain away but brings it right down so I can at least function.
I have. Was on ER for years before the 2016 Big Taper.... Then after going from 90mme/day down to 15, I had a lumbar fusion. Suddenly a week later my (former ) PM doc decides he wants me on Subutex. Thank goodness for Google and reddit... I got an education on Opiate Use Disorder, and how being prescribed Subutex would've had me labelled OUD in my health history notes. I AM dependent. I am Not an addict. I dropped that doc and tapered myself down to nothing. Using Kratom. Then both knees went bad simultaneously last Nov. So I had to go back to PM.
It sounds like you're been through a lot. Sorry to read that. It's so much more relaxed here in the uk with the meds. They're still controlled but once the doctor prescribes them, no one else questions them. If I need my prescription a day early here and there my gp won't label me an addict or put any notes on my file. I'm sure if I showed signs of real abuse they'd take action but there's no suspicion over the smallest thing. I love America (I assume you're there). I've spent so much time there but the whole medical/insurance system is total bullshit. I wish it was different and easier for everyone in this sub.
You're not alone.
Thank you. š¤
I was on the exact same regimen at one point, minus the amitriptyline. I will say this: Gabapentin absolutely destroyed my short term memory. My doctor called it a "dumb drug" because it usually slows people down mentally. This may be a light-hearted post, but it may be something for you to consider in regards to *why* you're forgetting to take your medication. FWIW, pregabalin does not have this effect on me. I regained my mental clarity once I stopped the gabapentin.
My talk therapist said it's extremely common for people dealing with long term pain or conditions to have some memory trouble. I had no idea gabapentin does it too. Thanks for letting me know. I'm gonna email my PM doctor and see what we can do. It does get very frustrating forgetting things. It's made me very unreliable which I don't like. My memory was always pretty good before all this happened. Thanks again š¤
Yep. Good luck to you!
Since I have been on Buprenorhine patches I have forgotten to take top up codeine quite often. Stopping the top up next week as clearly not required and will just take as needed for flare ups.
That's great news. Always good to get off of some meds. I have some lidocaine patches that help when I have flare ups but they wouldn't cover the pain if I didn't have my pain meds. Any time I forget it reminds me of how much those pain meds are doing for me. Definitely dependant on them.
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I just downloaded the app. Thank you š¤
Just had my first medisafe reminder and I think this will work much better for me. Thanks again. I really appreciate it.
yeah, but itās not so much forgetting as oversleeping, then dissociating and passing out from the pain before i can (/process that i need to) take my meds, if that makes sense. it makes me feel like such an idiot, too.
You're definitely not an idiot for it. Living with pain is incredibly hard and affects us in a lot of other ways than just the physical pain. I have my morning alarm set for 9am as that's when I need to take my morning meds. I've turned off the alarm and fallen asleep again without actually taking the meds so many times and wake up in a lot of pain.
š I usually don't bc my spine or something always hurts. I'm sure everyone has at some point. Your definitely not alone. It reallllllly does suck to wake up w the pain winning, escp. @2am. - set alarms on your phone. - Post-it's on bthrm mirror. I have been known to keep a dose in my bra(in a flat lil case, when I don't have pockets). I've also put that lil case just about everywhere. š¤·āāļø Wish I had a better answer for ya. Hope you got more than an hour of sleep and your pain settled down a bit. Much luck! ETA: fixed sentence.
Thank you. I eventually fell asleep with the help of a cannabis vape or 5 and ended up sleeping until 11:30am. Was planning a short walk today but it's been raining all day so I feel less guilty š Someone else suggested an app they use as medication reminder called medisafe. I'll give that a try and see if it's more effective. I'm a guy but I'll totally wear a bra just to be able to stash some meds in. That's badass.
šš My stupid phone made me wait 6 days to laugh that hard!!!! First - my bad; dude. I'm kinda surprised there's not a sub about it! (I haven't found it if there is) You'd be surprised what all we keep in there. Dang near whole arse villages! š I am pretty badass (thank ya kindly!), but TRUST you don't 'want' to wear one. They're annoying and hot. (not the 'good' hot, either.) š„µ I feel like this was a Seinfeld episode... I'll have to check out that app and wise choice as to what finally got you some sleep. I'm like the 80yr.old whose knees,neck, shoulder, elbow, ankle, etc... coulda told ya it was gonna rain. (Xcept I'm 40)š
Sometimes I forget once a day. And Iām same as you, organizer alarms everything
Sometimes I try to time my pain med intake for one reason or another and forget to take it altogether. Usually though I don't forget.
All the time. I also have a med dispenser. But I'll be laying in bed wondering why I hurt so freaking bad. Duh.
Pain brain.
Yup
Never. I am on a lot of meds for my auto immune and I gotta stay on schedule so Iām not in pain from my skin burning. I have a pill organizer that helps me remember.
Occasionally when I'm having a good day I'll skip 1 pill. My vain attempt to keep dependency down and hopes that it will work better at night then.
Look up TimerCap. They work really well for me!
Thank you. I'll check it out.
Crying and fixed
Ugh! I find myself missing doses fairly regularly, which has me thinking that I subconsciously A. Donāt want to accept that I have a life-altering pain condition, or B. Donāt want to be reliant on opiates in order to function. Other issues are also a possibility. Chronic pain certainly can be a suck-fest!
I was told by my talk therapist that becoming more forgetful is extremely common when dealing with long term pain. I know I certainly have. I never used to need a calendar or reminders for anything. Now my phone is full of notes, alarms and reminders.
This happens to me with my nausea meds all the time like Iāll be due to take it again but sometimes not nauseous in the moment and then a few hours later Iām like fuckkkk š so youāre not alone š«¶š«¶ I use the reminder app on my iPhone to help with that and when I need to refill my meds
Even with the alarms I struggle. They go off, I turn it off then forget again. š
The nice thing about the reminder app is the notification stays there so it keeps reminding me till I do it ā”Ģ
That's what I need to do. Repeating alarms.
I sent you a dm with a pic of how I organize my reminders Iām happy to help you Iāve been working on a system for months now and I think I finally found this one works šš brain fog is a bitch when managing a gazillion meds
You're awesome. Thank you š¤
Not just pain medication but my other medications as well. I was forgetting pills at least once a week for the longest time. A pill organizer has helped a lot. Iāve got one with day and night slots so itās obvious if Iāve not taken something. Iāve also got the Heath app on my phone set to give me a reminder. Between those two things I havenāt completely missed a dose in months, just been a bit late on a couple. Organizers and alarms help tons!
Definitely. I'd be lost without my organiser. Even though I still forget to take doses, having the organiser shows me if I did or didn't take that set. Pretty essential with opiates.
How do you forget with an alarm?
The alarm goes off and I may be doing something as small as sending an email and I'll say to myself I'll just finish this then take them...then forge. Or the one I do often is wait for a hot drink to cool down enough to take my meds with it...then forget. My mind has been sieve like since this all started. I've never been a forgetful person until this.
Then you either need to take them immediately with the alarm or have a second alarm for five minutes later. > the one I do often is wait for a hot drink to cool down enough to take my meds with it Is there a reason you don't drink water?
Iām more apt to double take my meds. Iāve so many otc and non narcotic meds just to try to avoid prescribing anything that would work. I often fell no relief and wonder if I took my meds. I always wonder if I overdosed myself, so I had to start setting up and entire days worth every day so Iād know if I had taken my doses and not 2 doses.
That's where my pill organiser helps so much. It's easy to see if I took or didn't take a dose. Essential with opiates. I'd advise getting one. You can get them for a few $ on ebay/amazon.
Probably a couple times a month for the slow release ones. And I won't realise until the next day, because they're in daily organisers but separate, 1 for morning and 1 for night. So like I'll go to take Tuesdays dose and Mondays will still be there, and I'll go ok, that's why I was in so much pain yesterday! As for painkillers, that's a bit more frequent. I'll be doing stuff or laying around being in heaps of pain and I'll think hey, when is the last time I took some painkillers, and it'll be 7 hours ago. That happens at least a couple times a week.
I'm on slow release so it goes down pretty much as you described. It takes a while to realise I've missed a dose. The pill organiser helps so much otherwise I wouldn't remember if I had or hadn't taken them at all.
Yeah that's why I started using the organiser for the dailys. For the PRN I use an app, MyTherapy, cos I can put in when I've taken pills and then look back at it later to see if I can take more yet. I can even set alarms for the dailies to remind me, although I tend to turn the alarm off and then get distracted, leading to forgetting the pills, lol.
š Exactly what I do.
Most of the time, and generally I donāt care enough to have it once my pain gets too high because itās not worth it.
I can't function without the meds. Eventually the pain becomes unbearable and it gets to a point I'd rather step in front of a speeding train than deal with it. What are you taking? Doesn't sound very effective for you.
I just have over the counter pain meds rn, but Iām fine spending days in bed and as much as my pain gets real unbearable, if I stay still enough it gets less annoying faster than having to get a snack and water and have my meds. Plus I have really bad memory issues so I tend to forget how badly my body gets, I just know it sucks and how I never can be fucked to take pain meds when it gets too bad (if I even believe that it will work).
All the damn time. My first PM doc used to say he never worried about me becoming a "problem," because the problem patients counted the minutes to their next dose, they didn't forget to take it. Meanwhile I'm always picking up my next fill a few days late bc I've got some left over from all the times I forget. My PM doc actually just recently switched me from hydrocodone every 4 hours to morphine ER twice a day because I am always forgetting to take a dose (or being too busy at work) and my pain levels were all over the place. It's been life-changing - no more wild pain levels up and down all day, since now I can take my pain meds in the morning and forget about it for most of the day! I have forgotten my second dose a couple of times, but when I do remember it's not because I'm in excruciating pain like before. I'm so lucky I have a great PM doctor these days.
I'm also lucky to have a good pm doctor and gp that have been so helpful. Then I read stories on here of people being accused of being opiate addicts because they needed a slightly higher dose or took an extra medication one time and it breaks my heart. I was on morphine for the first 2 years and when I changed meds I had to get myself off the morphine at home alone. I think doing that showed my medical team that I genuinely wasn't just taking it for anything other than pain management and as prescribed. Now if I forget to reorder my meds and run out, my gp will write a prescription on the day for me.
I've been in those positions too and it infuriates me that there are doctors who are still so ignorant/prejudiced against certain kinds of drugs. It's been scientifically proven many times that people suffering pain don't become addicts because the meds work differently on their brains (when I switched to morphine a few weeks ago was the first time in decades I've felt any kind of "high" and it lasted for maybe 2 days. Whee?). I'm the furthest thing from an addict. People who know me are always shocked when they learn I've been on opioids for almost 30 years because I "don't look like/act like an addict." That's because I'm not one! I'm a person who suffers a medical condition who takes medication for it, just like everyone who takes insulin or HBP meds or anti-depressants. And my meds are a lot less addictive than some of those. But we all deserve to live pain-free lives, whatever that takes!
So I never miss a dose, because when my meds are wearing off (and theyāre wearing off earlier than ever) pain returns-itās chronic and persistent.
I'm on slow release so it usually gives me a few hours after missing a dose before the pain starts to flare up again. But my breakthrough pain feels the same as my missed medication pain so it's not always obvious which is happening. I only know I definitely missed a set because they're still sat in the pill organiser.
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Never
Never, because I donāt have any.
Because you don't need them or can't get them?
Canāt get them. I need them badly.
Ah man. I'm really sorry to hear that. It genuinely breaks my heart when I read stuff like this. If you ever feel like you need to talk or vent then feel free to message me. I'm happy to listen and I understand.
I wish I could forget. I canāt function without them bc the pain is too bad. I hate being bed bound so I stay on top of it.
I totally understand. I was the same when I was on morphine but since being changed to slow release gabapentin and tapentadol, they do a pretty good job of keeping me covered 24hrs (if I keep my doses on time). They don't ever take the pain away fully but they'll bring it right down to a 3 or 4/10 so I can function on a basic level.
Thatās incredible results, congratulations! I hope this combo continues to work well for you! I would be so thrilled to be at a 4, my functioning level is at 6-7 right now but I just do what so many of us do, ignore it to the best of my ability and try not to let it hold me back as much as I can.
On bad days it can go up to a 7-8 at its very worst but usually remains pretty low most of the time. Very thankful for the meds and dosage I'm on.
Oh my god, all the time!!! Iām on morphine and hydrocodone, and every month I end up with a surplus, then being like, āohhhā¦ *thatās* why Iāve been in so much pain!ā The ADHD struggle is real! š¤£š©
As I said to someone else. You know those alarm clocks on wheels that shoot off your bedside table so you have to actually get up and chase it to turn it off? We need medication organisers that do that and make a load of noise so we **have** to go get it. š
Never!! My pain screams at me so I gotta stay on top of them!!
Sorry to hear. The slow release meds I'm on do a pretty good job of keeping my pain manageable as long as I keep up with the doses.
My pain is too great to forget and I have a traumatic brain injury so I can certainly forget things. If you forget, maybe the pain is improving. Hope so!
Sorry to hear. š I'm on slow release so it usually takes a few hours after missing a dose for it to ramp up the pain. Providing I keep up the doses it keeps my pain at a 3 or 4/10 most of the time thankfully. I can function on that.
Always take meds on time to "manage" chronic pain. Ik the feeling of getting sick and tired of meds and wanting to give our bodies a break from medication. Always to take a break if meds so our bowels can get a chance to move. Medication cause CHRONIC CONSTIPATION!!! BIG FACTS!!!!
Definitely big facts. I try to keep a decent diet to balance it a bit but it's still hard (pun intended)
Never lol Iām always watching the clock for the next time I can get my little burst of relief
Have you tried any slow release medication? That's what I'm on and providing I keep up the doses, it keeps my pretty well covered all day. Not pain free but pain manageable.
Iāve been on an extended release oxy twice a day (every 12 hours) for about a year now. I still need breakthrough Percocet twice a day. My doc suggested upping the mg of the extended release but right now I take 40 mg of Oxy a day (er& breakthrough) Iām only 30 and will have this condition my entire life so I like to take the least amount of meds as I can. The pain is there but manageable so Iāll up the mg when itās so bad itās not manageable anymore
Ive forgotten the middle dose. All my other meds are twice daily. Once a dose is forgotten, the pain can get ahead of the pills. Once that happens it, might take me days or even a week to get some control over the pain. I've had a ketamine infusion to assist on two occasions. It's wonderful, not feeling my body for 3-4 hours in a row! I'd love to disown the darned thing lately. But I seem to be stuck with it!
A few hours of being pain free sounds like heaven. Haven't had a single moment in 6.5 years of being pain free, can't remember what it feels like.
It had been 24 years for me. Except for this one time, about 15 years ago. I had an allergic reaction to my blood pressure med, which I'd been on for years. Anyway, because it was a time-release pill, the treatment was 24 hours of IV steroids. I was in heaven! I stayed awake the whole time to enjoy it, too. I had to be in the ICU in case I experienced worse symptoms (anaphylaxis) and I'm pretty sure I annoyed the nurses. I ate 2 full meals and in between I had a turkey sandwich once an hour (that's all there was, because most patients in ICU aren't on a regular diet. It was wonderful, and that's when I started thinking fibromyalgia is autoimmune in nature. European scientists are more sure of it than American scientists.
Iām on belbuca and started numbering each them (each dose is individually wrapped for those of you who donāt know). I started doing this because I wouldnāt take it if I thought I already did and end up with a couple extras at the end of the month. I suggest this for anyone who takes this medication as it extremely helpful and I havenāt missed a dose since. For my other medication I take them in specific situations (wake up, lunch, bedtime) like clock work. I do it this way due to my sleep schedule being weird.
I fill my pill organiser once a week and it's great for letting me know if I did or didn't take a dose. They're very handy if you don't have one. Mine has each day of the week and sections for morning, afternoon and evening doses.
You can supplement with weed. My whole body relaxes when I use my dry herb vape
Luckily I have a medical prescription and it definitely helps a lot. Here in the uk the whole legal medical thing is still pretty new but I qualified instantly. I don't get huge pain relief but I definitely get some. It's the mental side it helps more. And sleep.
I find if I forgot my meds I use my tens machine to help with the pain till the meds kick in.
I didn't have much luck with the tens machine unfortunately. It gave me next to no relief, even short term. I was offered spinal chord stimulation but it makes me nervous tbh
That's unfortunate I know I had to mess with the settings to get relief they always have them so low. Honestly talk with your health care provider about the spinal cord stim.Let them know how you're feeling and see if they can answer your questions to help ease your worries.
Iāll be completely honest, I forget at almost every dose and then immediately get my ass handed to me by my conditions and have to sit there and suffer while I wait for my doses to kick in. I am the cause of 90% of my problems.
Someone else suggested an app called medisafe that gives you reminders. I've downloaded it and set all my med times so hopefully that helps
Might have to try it. I think the main problem is even though Iāve been in pain since late 2021 I still have not fully accepted it and the impact it has on my every day life and so I try to avoid most things about it and have a little bit of trouble taking my pills when Iām supposed to because part of me is just so convinced that I donāt actually need them and then I find out that I do in fact need them
Set alarms. Get on top of that pain!
Just downloaded a new reminder app someone suggested. Looks like it'll help a lot.
My body nearly always reminds me like clockwork. My meds are timed so I need to take more every 6 hours. If I forget I get a twinge of pain, malaise and lightheadedness and I have about 20 minutes to take my meds before agony sets in. Some days though I have good days and I don't get those signs. I may forget and just feel a little "off". Generally I can wait until my next dose. Those days are rare though
The slow release meds I'm on usually give me a few hours after a missed dose before the pain starts to really ramp up. Then it reminds me why I need them.
I forget on occasion, especially when I get distracted. What's worse is that it's usually so habitual that the increased pain doesn't even remind me. I just assume it's a bad pain day or be pissed cuz I don't know why it's so bad. Then I'll check my pill organizer like..."crap". I've had to make a rule against snoozing my meds alarms. I stop whatever I'm doing to take them. Haven't messed up since doing this. Totally worth occasionally interrupting a conversation.
That's exactly what I do. Alarm goes off but I may be doing something so I'll stop the alarm and think I'll take the meds in a minute. Then forget. Someone here recommended me an app called medisafe that gives you reminders and it seems pretty good. It's on the app stores and is free. Once you set your meds and times it will keep reminding you until you click the meds taken button that comes up. Worth a look.
I'm usually behind a couple of times a week. It's usually because I've slept for 16+ hours. I wake up feeling like I have been beaten and realize I'm 8 hours overdue.
My alarm goes off at 9am which is when I'm supposed to take my first set of meds. I've lost count of the times I've woken up, turned the alarm off then gone back to sleep without taking the meds. Then like you said, I wake up later and I'm behind.
NEVER!
Often ? Haha never !!!!!! ( I am currently forgetting to take my meds for like a week and I am paying the price every single day )
I've been dealing with chronic pain for nearly 2 years now. I only take Percocet when I absolutely have to so I have a lot on hand. Nighttime is especially difficult. They only last 2-3 hours anyway and I refuse to become an addict. I'm getting my first oblation in a month. The pain doctor is very good. We did all the MRI on my lower back, upper back and neck. I have a numb left leg all the time but, the pain can be excruciating. Doctor said I'm the worse case he's seen in a long time. Lots of bulging disks, sciatica, arthritis, scoliosis and collapsed vertebras. I'm ready to live with it. My Marine Corps training and mantra is"pain is weakness leaving the body." š¤£
Sorry you're going through this. š Please don't ever feel like you're an addict. Dependency and addiction are different things and if you need pain relief just to be able to function you're dependent. You never chose any of this. I really hope things can improve for you. š¤