Hi guys, Sorry I've been inactive lately, I'm trying to get more active in forums. I've made this topic because I am currently on 40mg of morphine a day, spread out in 2 doses each that are 12 hour release. I take 10mg am and 30mg pm. Well... That was until 2 days ago when my doctor am I tried to lower my evening dose to 25mg. This has resulted in me waking up almost unable to move and just managing to crawl into a hot bath. Yesterday I was okayish but now that 48 hours have passed and the level of morphine in my blood has lower I am in even more agony than usual. I don't know if I'll be abe to convince the docs to let me go back to 30mg though. Please help with ideas on sorting this put with the docs and ideas to lower my pain. As it is I can barely withstand my daily pain with the 30mg yet along with less.
Be very persistant with your doc that the pain has increased and the higher dose needs to be put back, I would even call and complaine about the pain to the nurses and the doc for a few days and ask them what to do, after a few days, if their ideas don't work, just stright up tell them this isn't working. You have your rights.
Was it ur gp that changed dose or pain management team? Had u agreed to a reduction regieme? My locum gp nearly(my superb gp was on holiday)... took away my pregabalin one weekend... and it put me on a massive spiral... let alone my high fentanyl patch...☔ anyhow when i saw my real gp on the monday she prescribed as the pain management team had advised... and told me he had not delt with me correctly!🐪 ... so if u have enough... up it to 30mg again... then get an appointment with ur gp soon as possible and explain what happened... 🐫or get an apointment with ur pain management team asap Good luck hunni...🤗 dont worry.. it will be ok in the end 😙
Lulabel, it was my pain management doc but my GP gives me my scripts. I agreed because I hate being dependant on Morphine. However, I told them when I agreed that functionality came first and if lowering the dose meant I couldn't function then it goes back to whatever I feel it needs to (to a maximum of the original 30mg)
My GP would sort it fastest probably but only after talking to the pain management team. I don't think they'd like it if I uped the dose back without chatting to them as despite me telling them I would if I have to, they are reluctant
I asked them to switch to that before (I asked for 12 hour release). They refused. I even explained the reasons why and the scientific justification for it (e.g. incomplete cross-tolerance which means that it would work better for at least a while)
I understand.. call the pain team... speak to pain management nurse if u can... they always try to reduce me... but im at the lowest i can go... they will listen... if they reinstate ur dose... get them to fax ur gp direct... then he can rx u the 30mg dose! Dont worry i was on 260mg morphine a day after 3xspinal surgeries... and i got off it... 6yrs ago... but now pain is back hard so i am on fentanyl patches worth just over 300mg morphine a day now x dont panic hunni x
Plenty of people metabolize it faster and have to change their patches sooner. Usually every 48 hours. Slso I found that it very much mattered where I place the patch. **Please anyone using any Fentanyl product *No Grapefruit! It CAN kill you, no joke.
Thanks LMB, I know about the 48 hour thing but I didn't metabolise the fentanyl whatsoever, it had no effect on any of the days. The only thing I could think of is an issue with one of my CYP enzymes affecting pro-drugs. Thoughts?
I also knew about the grapefruit issue but they never told me that either. I'm acutely aware of things like that and always research myself due to past experience. It's the same issue with other medications like Statins.
Flappsy, when I was on Fentenyl patches they never lasted me 3 days. By the end of day three I would be crashing and pain levels were unbearable. I had to come off of them because I didn't want to use extra ones. I was on 150 and I went on the pops instead but they don't cover then in my plan any more.
AlwayZ, I seriously doubt my doc will prescribe the Fentanyl for long term. When he releases me he'll likely say no more. Due to the neuropathies in my chin/jawline I'm guessing he may want to increase the gabapentin. But I don't want anything to increase my weight or sleepiness. I'm napping way more than usual...3 hours today!
Basically to shorten it. Since my morphine lowered I've been struggling way more than normal. I've not been able to do anything except cry😭😢. I've been really tensed up due to the higher pain level. I'm now way behind on the work that I have to have done before school begins.
I've tried to contact my GP and pain clinic both of which I've never had problems with. I contacted them 5-10 times a day. I got ABSOLUTELY NO RESPONSE 😠😠except for a phone call from my GP when they knew I couldn't answer the phone. I called every department in my pain management clinic and even the clinic co-ordinator and administrators. So everyone in that clinic knew I needed urgent help but no response.😠😠😤😤 So I plan to complain but I'm so tired and in so much pain that I just cant at the minute.
Anyway Ive upped my morphine back to the normal dose because I can't take it anymore. My docs won't be happy but it had to be done. So I'm going to try to contact the pain management clinic and get my meds changed about so I can try again when I'm ready/in a school holiday.
I change my patches every 48 hours they do not last 72 hours for me. You may need to ask and explain that day 3 is hell for you. I just reduced my (Fentanyl ) dosage by 50% and I am in less pain and feel more like myself. Kinda funny the doctor wanted to increase I refused. That was over a month ago, so far so good. :)
Hi LMB, I'm actually on MST (12 hour release morphine). I used to be on fentanyl patches but evenue at a very high dose with a new patch every day (what they had me on). It didn't work at all. That's what leads me to think I don't metabolise it. Have you come across this before in your field within medicine?
Fentynyl was a nightmare for me! Never got a steady flow of pain relief (if any really) but plenty of weird side effects. Well the dr didn't like that at all and was more interested in playing police than treating pain. He miscalculated the days, putting me in withdrawal and more despair because I was made to feel like a criminal for it. I paged him on a Friday night when I realized it, after counting 18 times to be sure. He was angry but had to admit the error and prescibed more the next day--this was the 72 hour plan. Months later I was in a pain management program for a short time ($$). The clinical director and head physician said those patches never last 72 hours and that they are meant to be changed every 48! He was angry I'd been put in continual withdrawal and quite certain about the patches. From everything I've read since--including your post--I believe him. I was off it by then but he was such a compassionate Doctor, the difference was night and day. He was actually interested in treating his patient's pain--effectively and safely. I told him the day I left how much I appreciated him and he could hardly take it...humble too!
I don't do well with time released meds or pain patches. Don't know if it's an absorption problem (I think so because of the colitis) or my metabolism but it's been a problem. I haven't tried the morphine patch but I have tried the long acting pill...😖😖😖. I think it's ok that you went back up with the dose, even if it's just for now. None of us wants to but there are so many individual factors and not so many alternatives for some of us. I just wish the punishing factor was removed from the equation--it's enough dealing with severe pain on a daily basis. I'm sending gentle hugs to you and hoping you find the best possible comfort and relief💝.
Thank you marsemouse. Just to let you know, it is the time release (12 hour) pills I'm on. I was on fentanyl patches a long time ago and never got any pain relief even on day one with about 5 patches on my arm. I'm just waiting for my blood morphine level to come back to normal because at the minute everything kills.
Ugh, so you had the same problem with that patch. It's been a few hours so I hope by now you're much more comfortable (any more comfortable!) and tonight you can get some good rest and relief. It's inexcusable that you can't get a response from anyone, that just sucks. I'm sending emergency relief vibes your way 🔮! And hoping you get on a med regimen that works so you don't ever have to go through this again🤕 pill patch or anything else. Gentle hugs and much comfort to you sweet TiredNurse 💝💛🌾🌺🌟🛀🌙💕✨
Your body would have taken a couple days for the fentanyl to get in your system,be careful with dosing in the beginning(especially if you had '5' patches on your arm!),as it's not a true representation of the fentanyl.
Thank you marsemouse, I feel a bit better today now that my morphine level is coming up to normal again. Thank you for the vibes
I know JAHMAC, I was in hospital at the time so it was the docs and nurses doing it all for me. I was a crying, sobbing, euthanasia-wanting mess. They had me on 12mcg the first day, then added a patch to make 2 x 12mcg, then 3, then 4 etc. So they were giving me new patches every 2 days and adding a patch each day until they found a good dose and then they said it just wasn't working.
Coming off morphine is very hard indeed. As many have here, i have come off it 4 times and it never gets easier.
The increase in pain would be your bodies receptors screaming for the drug. Pain will get indeed worse because of this. Ie/ Addiction!
However after about 10 days your body becomes use to no opiates. Your body will calm. Its not bloody nice though. Docs can use trancs and receptor blockers in an hospital environment..
I have done alone cold turkey so to speak. My family had to nurse me for 10 days. My doc wasnt happy i did it alone. I can only desribe it as hell. I was determined and succeeded..
The pluses= Depression lifted. Not waiting to die. Can tiolet properly. Not so zombyish. Not contolled by a single drug.
My pain is no worse as long term opiate use does not help pain. Body becomes use to it and we are only feeding the dragon.
I use other pain management techniques and holistic approaches now.. I do use strong pain killers now and then as a last resort. And because i have no addiction i get benifit from that use. Must say that this use would be for perhaps one or two days only to get through breakthrough pain period.
I feel much more alive not using opiates. I can here music emotionally i can see the day i can feel. Good luck Gxx
Thank you groggy. Unfortunately, I had to go back on my normal dose. I had been on my lower dose for around 2 weeks and my pain was still awful. I couldn't do anything (not that I normally can) and all I was doing was sobbing in bed and bathing. My back was also very tense all the time to the point where when was in the bath once I couldn't move. I was stuck like that for 10 minutes it was terrifying. I just hope that my docs contact me and move my other meds around (e.g. Up my pregabalin) so that I can try again when I'm ready.
Luckily the morphine doesn't affect my toileting. Unfortunately, I do have mental health problems; not due to the morphine though. Hopefully I'll be able to come off of it or at least down to a lower dose in future.
Tiredinpainandinsane, I hope you feel improvement in your pain soon! I've never had any pain patch until this last neck surgery, when they put me on Fentanyl. I have one more left and I hope I don't get the pain I had two weeks post op when I didn't put one on, thinking I didn't need it. Omg was I ever wrong!! I guess this time next weekend will tell. Hugs love and prayers (positive thoughts) for you! 🙂💕🙏🌸
I hope everyone is doing well 💜💜 I would just like to reply to Groggy's comment. I had to read it twice, no three times. I sincerely hope I got the subtext wrong. I just think it's extremely important that we all remember that what may work for one person, isn't necessarily the best for another. And we should never give others advice or judge them. While some may choose to take a holistic approach that may be another persons "hell" and so on. We should lend an ear in difficult times, for we have all been there. Regardless of what treatment path we choose. Even if two people choose completely different paths it's not for one to say theirs is right, and the other is wrong. Everyone responds differently. We need to respect every person and their choice of medication, therapy, treatment, etc. we are here as support not to judge or look down upon. Again I hope I got the subtext of the comment wrong, but after reading 3 times I don't think so. With that being said TiredInPain I hope you are feeling better 💜💜💜 ((hugs)) I hope everyone else is having a low pain night! And I hope you get everything straighten out with you dr's office 💜😊💜😊
Katy... ⚘⚘⚘ im sure thats not what our Groggers was trying to say... 🤗hes always been so supportive to me... 🤔its hard when giving encouraging posts😉 without using ones own experiences... and coming off a tad rich 🐪 and sometimes 🤔 be read as judgemental 🐴as the person reflecting it...🐫 TIP is well versed in his knowledge...🤗 its all good hunni 😚
I'm glad to hear that! I was definitely hoping to be wrong 😊 thank you for letting me know. I know what you saying, And glad to know that the support is there as well! Hope you are doing better! Have a great day!
@Groggy I do apologize as I just finished replying. I wasn't judging anyone, I'm sorry if you took it that way. I'm not anyone to judge another. I if anyone used to judge everyone before I got sick, God wasn't kind in return giving me Fibro, neuropathy, ulcerative colitis, lupus, MS and more recently making my treatments unavailable. I'm glad I was wrong, I'm happy to admit I was wrong and I apologize for offending you. I will leave, again I apologize
Hi guys, Sorry, with the morphine and 3 oral infections this month I have some catching up to do. I'm back on my normal morphine dose and will be talking to my pain team about tinkering about and trying again. As I said earlier this is my third infection, only this one is much worse than the others. I have wisdom tooth problems which is what is causing the infections but this one, despite a course of strong antibiotics has managed to spread from the wisdom tooth to my entire mouth, jaw, throat etc. So I'm up **** Creek without a paddel. I'm on stronger antibiotics as of today and I just hope they work because school started today too
It's so hard sometimes trying to express your experience without offending someone or sounding judgmental! I am glad you both cleared up the misunderstanding. We all understand feeling judged or misunderstood at times.. even snappy too I know sometimes I am in so much pain and irritated I snap too. I understand both of you and glad things are all good ! Sending love to everyone and hoping everyone is having a better day!
I think we all learn forgiveness...🤗 because we actually understand! 🤗 I know i am misunderstood😜 at the best of times... 🤔so at my worst...i can seem fierce... 🤗but my forgiveness is much greater 😚because i totally get it!
TIPI... 🤗good to see u my friend... 😙i hope the antibiotics help and u can get ontop of ur reduction... just keep trying till u crack it buddie 😚
Lulabel I totally agree with you I am the same! You never know what someone else is going through so I always remember that even when the person might be snapping at me! I am the least judgmental person I know ..it's the one good thing Fibromyalgia has taught me!!😁