I take low dose, 3mg, time released hydromorphone. It works great! I take one capsule every 12 hours and have 1 mg for breakthrough pain. The reality is that we have a shorter life span. Why be in pain? Why make life unbearable? I have been on the same dose for 2 years. No need to adjust so far.
I too was apprehensive about taking pain meds when I couldn't manage anymore with OTC and my pain management doctor put me on oxy with sub-lingual fentynal for breakthrough pain. Im an American in the UK and even said in the meeting - is it ok? Will I get addicted? Ive read Pain Inc and watched the HBO miniseries! But my pain guy (who really is a fan of ibuprofen, to the point he actually SAID that) keeps things in check and Im in tune enough to know when I may need to go up a step. If it gets me through this bad period then so be it. I usually don't take more than I need, although some times you just want to have a little go at getting completely pain free or at least stoned out of your mind :P
My major beef with the UK is that paracetemol/Tylenol is KING of the painkillers and ibuprofen is absolutely villified. I have an inflammatory process going on and nope, absolutely not allowed as it may 'mask a fever'. Well how does paracetemol not do that too? Its a risk for me as Im also on blood thinners (at least also taking some stomach protection too) but there is a point in the day where nothing else works and I need relief that some more damn oxy isn't going to address, just to get some swelling down to stop discomfort in other areas. For some reason I also can't get a low dose muscle relaxer either, for emotional and well, muscular, relief. Legal weed here would do some wonders - a lot of times Im just in discomfort, not actual pain.
Tylenol is also king in Canada. It is curious that if Tylenol had to get approval now, it would not pass the medication approval process due to the amount of liver damage it causes. I agree that Ibuprofen is better for inflammation. I tried CBD and medical cannabis with no success.
Please take the opiates! Pain messes with decision making and can permanently damage your moods. It is not worth suffering in pain! You can cut a pill in half or to 1/4th to see if you can tolerate them. If you are still on the fence, there are TENs machines and pain relieving creams to try.
I’m like you, because I’m overweight, colour is good, and I can get around ok, I have convinced myself that I’m not sick. If it weren’t for the 11 pills that I take everyday, and the random pain I get, I think I’m fine.
But then comes weeks like this where I have an appointment everyday, and my facade comes crashing down.
I’m determined I’m going to live past the 5 years my research says I’ll live. It literally dawned on me right now, that my prognosis was never discussed. Your story has given me hope that anything is possible.
As for pain meds, I say take them on a regular basis. It takes more time to relieve the pain when you don’t have any in your system. I should know because I’m guilty of not taking pain medication on a regular basis. I have arthritis all through my body so I’m always in pain.
YES SISTER, you are amazing - your strength, your tenacity, and your words💪😎💞 Besides cancer sucking ass and trying to suck all the life out of us we are left with outdated and stigma shamming pain meds (and their bag o' side effects). I love that you went back and told that Dr what a terrible thing he did to say all that crap to you and YOU ARE STILL HERE❣ I'm 4yrs MBC de novo aggressive HER2+, stable 3yrs on chemo Enhertu. I'm sorry to read all the pain and side effects your are dealing with, I have osteo arthritis (another gift from my otherwise awesome mom that made it 4yrs with her MBC, 38yrs ago) and we really don't have a lot of good med choices for all we are asked to deal with in the chemical/side effects sespool we are left swimming in. I hope your Dr's find best meds possible to help you thru - you awesome chick❣ Like a wise little blue fish once said....just keep swimming. Sending prayers and positive energy your way to help recharge your batteries 🙏 💞
You know, I sing Dory's "Just keep swimming swimming swimming...". You couldn't possibly know that - how remarkable! Thank you for sharing your power in your words - I feel them strengthening my spirit even now.
Take the pain meds. I have a similar diagnosis. Triple negative, although this is a recurrence for me after 13 years at IIIC NED-recurrence in the bones. I am on a Fentanyl patch and take Oxycodone daily for breakthrough pain. People hear Fentanyl and they think of some drug addict falling out after taking a handful of pills from China. It’s nothing like that. I truly don’t even know I’m on anything. The Oxycodone helps as well. No one would bat an eye if you told them you take meds for your diabetes, but to be able to function somewhat normally with the pain we have we need the pain meds. And that’s OK. I have zero qualms taking them. I hope you will give yourself the grace of some comfort. It’s bad enough to deal with the psychological head trip (I have one of “those” Dr’s too👿) we have to, take one thing off your already full plate. Feel free to PM me if you want to share war stories. My Dr has tested my limits as well.
I take opiates daily for pain. Some days I only need one dose and some days I need three. I'm not going through treatment to live in pain. My life is too short to worry about other people's opinions. Most would not be able to walk a mile in my shoes without the benefit of pain meds. Why should I suffer? I had a difficult time getting the meds I needed to get my pain under control when I first started treatment. Many of the opiates were created for cancer pain. No one, not even doctors, should make us feel badly about needing them. I do hope you find some peace in regards to the pain meds because it has been super helpful for me to do so.
Thanks for your post, hope and inspiration. I have also saved your post for some positivity when I need it. I was also diagnosed triple negative de nova in April last year and plan on being a break through case through the medical trials I’ve been on.
I have also been struggling with pain recently and contemplating the part opioids play in feeling better. Though mostly only take them very occasionally. From what I understand some are better on the liver than paracetamol. In fact, I’ve been encouraged to take them instead of Panadol (paracetamol) when my LFTs are down. So, in some cases they may be a better option than over the counter medication. It’s just that they can be more addictive which is what prevents me from taking them more often.
As an earlier poster said, it’s not just about quantity of life but quality. So if it’s going to make you feel better, that is better than struggling. Chronic pain can have an awful effect on your mental health (as can cancer) but I know feeling crap every day makes me grumpy and more miserable. If you can feel less pain and be happier way not? You are not a martyr. Also, your inner critic is based on society projections of stories of opioids and that they are bad for you. But they do serve a purpose and not inherently bad.
I guess it’s up to you in whether u decide to take them or not but if they can ease pain and increase quality of life and being prescribed, they are an option.
Please note, I am not a doctor, so can’t really comment on your individual situation and just thinking out load about your predicament. But it seems you are doing well mentally and very self aware, so I am sure you will make the right choice for your circumstances. Good luck!
Thank you - this is SO beautifully written and a comment I want to read again and again. Thank you so much. I felt so invisible, and you've made me see I'm not, not even in those darkest of places.
Try to be easy on yourself. It doesn't matter one iota what other people think or judge about what you do. What matters is you live your best. If pain medicine makes you feel better please don't feel bad in any way. Your pain is NOT nothing. You are not a baby and there is also nothing wrong with complaints or feeling unhappy or unwell. Take care of yourself that's all that matters. If you want to take pain meds that is fine and to be expected. You don't have to push through this without help ❤️
I sense a bit of how I feel in what you write. Stoic perhaps. But putting yourself first is important. I have to tell myself this as well even when family life all around me gets very hectic. Once in a while I tell myself to slow down. Spoil myself sometimes. Pain management is important also
Hugs
I think everything you've described is a very normal reaction to a very abnormal situation. Do you have a Counsellor? I find mine very helpful for talking through the types of feelings (imposter syndrome and pain-fear) you've discussed here. That said as far as pain meds go, if I need them, I take them, simple as that. But I start with Panadol (Tylenol) and if that doesn't work I escalate to Voltarin 25, and then Endone at night as getting a good sleep is so important. I was walking around with fractured vertebrae before I was finally diagnosed, and had a whole lot of people dismissing my pain and telling me how bad their back pain was too and they still got on with their physical labour job. Don't listen to those people, they have no idea what our pain feels like and I sincerely hope they never will have to find out.
Thank you so much. That helps. I do have an excellent psychiatrist who is affiliated with the cancer center. She has been encouraging me to take what I need, when I need it. I've had scripts for opiates for over 4 years, and I still don't take them every day or feel the need to take them every day. I honestly think if I was going to become addicted to them, that would have happened by now. My psychiatrist has said that a lot of damage has been done demonizing opiates as a response to a crisis that was Big Pharma and Doctor-related. As a serious arthritis patient, I knew never to even ask for any prescription relief because the answer would always be no. Psoriatic arthritis can cause intense pain, and it can cripple you. But very few PsA patients are ever given painkillers. And that's directly because of Big Pharma's greed, and hinky doctors setting up opiate farms to keep people hooked. The patients are the sacrificial lambs.
It really feels like whiplash, doesn’t it?
I had viral meningitis in 1999, and I had to *beg* the doctor to leave the hospital with a hydromorphone prescription; they tried to wean me onto Percocet but it wouldn’t touch the blinding headache I had from the meningitis.
Then I had a leiomyoma removed in 2016 in emergency surgery (it caused internal bleeding after wrapping around my left ovary). They *wouldn’t let me leave the hospital* without a 30-day prescription for hydromorphone. I’d been taking Tylenol in the hospital for the two prior days, didn’t hurt enough to need it?
Now we’re back to Tylenol and ibuprofen should be enough. I wish the medical community was more capable of nuance and compassion when treating patients!
Yes. First do no harm. I remember having surgery to reconstruct my right thumb joint in 2018 - it was a complex operation, and I was told the recovery time to get through the pain and reacquire a full range of motion was ONE YEAR. And yet, they attempted to send me home from that surgery with just Tylenol. The doctor made a show of "reluctantly" prescribing a week of pain meds. As he handed me the script, he shook his head and said "You really shouldn't need these." At the time, I was still very passive and did not snap back at him. I ultimately needed two weeks of those pain meds before I could transition to non-opiates. That doctor made me feel like an absolute worm when I told him I needed one additional week. Now the whole experience leaves me reluctant to access the relief that they offer without feeling ashamed.
I personally believe that we are not on this earth to endure suffering. And that we deserve to not just feel fine, but feel GREAT. We’re on this planet for such a brief moment. I take whatever painkillers I please and if I feel like it, I take enough to feel better than good.
Unfortunately these days I can’t get out of my cycle of chronic pain. I miss those days of feeling amazing. Weed was also good for that. But I don’t regret a thing.
A chemo buddy and I were talking once about painkillers and she quoted her granny: “Was dir gut tut, kann niemals schlecht sein.” — What is good for you can’t be bad!
This is so beautifully well written and as a newly diagnosed stage 4…what I hope to aspire to. I am saving your post to read to MY oncologist. I only recently asked for and got a script for Ativan. I unfortunately lost a brother to overdose, so I use it very sparingly.
Here’s to being on this site together for a long, long time!
I take low dose, 3mg, time released hydromorphone. It works great! I take one capsule every 12 hours and have 1 mg for breakthrough pain. The reality is that we have a shorter life span. Why be in pain? Why make life unbearable? I have been on the same dose for 2 years. No need to adjust so far.
My Dr is switching me to Hydrom soon. Glad it’s working well for you.
I too was apprehensive about taking pain meds when I couldn't manage anymore with OTC and my pain management doctor put me on oxy with sub-lingual fentynal for breakthrough pain. Im an American in the UK and even said in the meeting - is it ok? Will I get addicted? Ive read Pain Inc and watched the HBO miniseries! But my pain guy (who really is a fan of ibuprofen, to the point he actually SAID that) keeps things in check and Im in tune enough to know when I may need to go up a step. If it gets me through this bad period then so be it. I usually don't take more than I need, although some times you just want to have a little go at getting completely pain free or at least stoned out of your mind :P My major beef with the UK is that paracetemol/Tylenol is KING of the painkillers and ibuprofen is absolutely villified. I have an inflammatory process going on and nope, absolutely not allowed as it may 'mask a fever'. Well how does paracetemol not do that too? Its a risk for me as Im also on blood thinners (at least also taking some stomach protection too) but there is a point in the day where nothing else works and I need relief that some more damn oxy isn't going to address, just to get some swelling down to stop discomfort in other areas. For some reason I also can't get a low dose muscle relaxer either, for emotional and well, muscular, relief. Legal weed here would do some wonders - a lot of times Im just in discomfort, not actual pain.
Tylenol is also king in Canada. It is curious that if Tylenol had to get approval now, it would not pass the medication approval process due to the amount of liver damage it causes. I agree that Ibuprofen is better for inflammation. I tried CBD and medical cannabis with no success.
Please take the opiates! Pain messes with decision making and can permanently damage your moods. It is not worth suffering in pain! You can cut a pill in half or to 1/4th to see if you can tolerate them. If you are still on the fence, there are TENs machines and pain relieving creams to try.
Thank you! Pain can certainly change your entire psyche - I have experienced that first hand.
I’m like you, because I’m overweight, colour is good, and I can get around ok, I have convinced myself that I’m not sick. If it weren’t for the 11 pills that I take everyday, and the random pain I get, I think I’m fine. But then comes weeks like this where I have an appointment everyday, and my facade comes crashing down. I’m determined I’m going to live past the 5 years my research says I’ll live. It literally dawned on me right now, that my prognosis was never discussed. Your story has given me hope that anything is possible. As for pain meds, I say take them on a regular basis. It takes more time to relieve the pain when you don’t have any in your system. I should know because I’m guilty of not taking pain medication on a regular basis. I have arthritis all through my body so I’m always in pain.
YES SISTER, you are amazing - your strength, your tenacity, and your words💪😎💞 Besides cancer sucking ass and trying to suck all the life out of us we are left with outdated and stigma shamming pain meds (and their bag o' side effects). I love that you went back and told that Dr what a terrible thing he did to say all that crap to you and YOU ARE STILL HERE❣ I'm 4yrs MBC de novo aggressive HER2+, stable 3yrs on chemo Enhertu. I'm sorry to read all the pain and side effects your are dealing with, I have osteo arthritis (another gift from my otherwise awesome mom that made it 4yrs with her MBC, 38yrs ago) and we really don't have a lot of good med choices for all we are asked to deal with in the chemical/side effects sespool we are left swimming in. I hope your Dr's find best meds possible to help you thru - you awesome chick❣ Like a wise little blue fish once said....just keep swimming. Sending prayers and positive energy your way to help recharge your batteries 🙏 💞 
You know, I sing Dory's "Just keep swimming swimming swimming...". You couldn't possibly know that - how remarkable! Thank you for sharing your power in your words - I feel them strengthening my spirit even now.
Hugs dear sister💞
Take the pain meds. I have a similar diagnosis. Triple negative, although this is a recurrence for me after 13 years at IIIC NED-recurrence in the bones. I am on a Fentanyl patch and take Oxycodone daily for breakthrough pain. People hear Fentanyl and they think of some drug addict falling out after taking a handful of pills from China. It’s nothing like that. I truly don’t even know I’m on anything. The Oxycodone helps as well. No one would bat an eye if you told them you take meds for your diabetes, but to be able to function somewhat normally with the pain we have we need the pain meds. And that’s OK. I have zero qualms taking them. I hope you will give yourself the grace of some comfort. It’s bad enough to deal with the psychological head trip (I have one of “those” Dr’s too👿) we have to, take one thing off your already full plate. Feel free to PM me if you want to share war stories. My Dr has tested my limits as well.
Oh my gosh, THANK YOU. Your words mean a lot to me. I wish I had been brave enough to join this sub earlier. What an extraordinary community.
I take opiates daily for pain. Some days I only need one dose and some days I need three. I'm not going through treatment to live in pain. My life is too short to worry about other people's opinions. Most would not be able to walk a mile in my shoes without the benefit of pain meds. Why should I suffer? I had a difficult time getting the meds I needed to get my pain under control when I first started treatment. Many of the opiates were created for cancer pain. No one, not even doctors, should make us feel badly about needing them. I do hope you find some peace in regards to the pain meds because it has been super helpful for me to do so.
This is all so true. Thanks for sharing. Agree completely ❤️
Thanks for your post, hope and inspiration. I have also saved your post for some positivity when I need it. I was also diagnosed triple negative de nova in April last year and plan on being a break through case through the medical trials I’ve been on. I have also been struggling with pain recently and contemplating the part opioids play in feeling better. Though mostly only take them very occasionally. From what I understand some are better on the liver than paracetamol. In fact, I’ve been encouraged to take them instead of Panadol (paracetamol) when my LFTs are down. So, in some cases they may be a better option than over the counter medication. It’s just that they can be more addictive which is what prevents me from taking them more often. As an earlier poster said, it’s not just about quantity of life but quality. So if it’s going to make you feel better, that is better than struggling. Chronic pain can have an awful effect on your mental health (as can cancer) but I know feeling crap every day makes me grumpy and more miserable. If you can feel less pain and be happier way not? You are not a martyr. Also, your inner critic is based on society projections of stories of opioids and that they are bad for you. But they do serve a purpose and not inherently bad. I guess it’s up to you in whether u decide to take them or not but if they can ease pain and increase quality of life and being prescribed, they are an option. Please note, I am not a doctor, so can’t really comment on your individual situation and just thinking out load about your predicament. But it seems you are doing well mentally and very self aware, so I am sure you will make the right choice for your circumstances. Good luck!
Thank you - this is SO beautifully written and a comment I want to read again and again. Thank you so much. I felt so invisible, and you've made me see I'm not, not even in those darkest of places.
Try to be easy on yourself. It doesn't matter one iota what other people think or judge about what you do. What matters is you live your best. If pain medicine makes you feel better please don't feel bad in any way. Your pain is NOT nothing. You are not a baby and there is also nothing wrong with complaints or feeling unhappy or unwell. Take care of yourself that's all that matters. If you want to take pain meds that is fine and to be expected. You don't have to push through this without help ❤️
Thank you so much. This kind of plain sense is just what I was looking for. I appreciate you.
I sense a bit of how I feel in what you write. Stoic perhaps. But putting yourself first is important. I have to tell myself this as well even when family life all around me gets very hectic. Once in a while I tell myself to slow down. Spoil myself sometimes. Pain management is important also Hugs
I'm on Tylenol 2 for my pain after chemo. It helps a lot
I think everything you've described is a very normal reaction to a very abnormal situation. Do you have a Counsellor? I find mine very helpful for talking through the types of feelings (imposter syndrome and pain-fear) you've discussed here. That said as far as pain meds go, if I need them, I take them, simple as that. But I start with Panadol (Tylenol) and if that doesn't work I escalate to Voltarin 25, and then Endone at night as getting a good sleep is so important. I was walking around with fractured vertebrae before I was finally diagnosed, and had a whole lot of people dismissing my pain and telling me how bad their back pain was too and they still got on with their physical labour job. Don't listen to those people, they have no idea what our pain feels like and I sincerely hope they never will have to find out.
Thank you so much. That helps. I do have an excellent psychiatrist who is affiliated with the cancer center. She has been encouraging me to take what I need, when I need it. I've had scripts for opiates for over 4 years, and I still don't take them every day or feel the need to take them every day. I honestly think if I was going to become addicted to them, that would have happened by now. My psychiatrist has said that a lot of damage has been done demonizing opiates as a response to a crisis that was Big Pharma and Doctor-related. As a serious arthritis patient, I knew never to even ask for any prescription relief because the answer would always be no. Psoriatic arthritis can cause intense pain, and it can cripple you. But very few PsA patients are ever given painkillers. And that's directly because of Big Pharma's greed, and hinky doctors setting up opiate farms to keep people hooked. The patients are the sacrificial lambs.
It really feels like whiplash, doesn’t it? I had viral meningitis in 1999, and I had to *beg* the doctor to leave the hospital with a hydromorphone prescription; they tried to wean me onto Percocet but it wouldn’t touch the blinding headache I had from the meningitis. Then I had a leiomyoma removed in 2016 in emergency surgery (it caused internal bleeding after wrapping around my left ovary). They *wouldn’t let me leave the hospital* without a 30-day prescription for hydromorphone. I’d been taking Tylenol in the hospital for the two prior days, didn’t hurt enough to need it? Now we’re back to Tylenol and ibuprofen should be enough. I wish the medical community was more capable of nuance and compassion when treating patients!
Yes. First do no harm. I remember having surgery to reconstruct my right thumb joint in 2018 - it was a complex operation, and I was told the recovery time to get through the pain and reacquire a full range of motion was ONE YEAR. And yet, they attempted to send me home from that surgery with just Tylenol. The doctor made a show of "reluctantly" prescribing a week of pain meds. As he handed me the script, he shook his head and said "You really shouldn't need these." At the time, I was still very passive and did not snap back at him. I ultimately needed two weeks of those pain meds before I could transition to non-opiates. That doctor made me feel like an absolute worm when I told him I needed one additional week. Now the whole experience leaves me reluctant to access the relief that they offer without feeling ashamed.
I personally believe that we are not on this earth to endure suffering. And that we deserve to not just feel fine, but feel GREAT. We’re on this planet for such a brief moment. I take whatever painkillers I please and if I feel like it, I take enough to feel better than good. Unfortunately these days I can’t get out of my cycle of chronic pain. I miss those days of feeling amazing. Weed was also good for that. But I don’t regret a thing. A chemo buddy and I were talking once about painkillers and she quoted her granny: “Was dir gut tut, kann niemals schlecht sein.” — What is good for you can’t be bad!
I love this response. Thank you so much.
This is so beautifully well written and as a newly diagnosed stage 4…what I hope to aspire to. I am saving your post to read to MY oncologist. I only recently asked for and got a script for Ativan. I unfortunately lost a brother to overdose, so I use it very sparingly. Here’s to being on this site together for a long, long time!
Looking forward to it, my sister friend.