Does this PAIN ever stop?

Hi. Thanks for reading. I'm new, and I don't write that much.

I'm taking Oxycontin (40mg) per day for lower back pain. I also have

Oxycodone (20) for BTP. I have been ok for a year. Pyhsio for 6 months has helped, and I have been taught to do it at home each morning and night. I still need to take my pills.

The pain is really awful at times, but, I cope. However, my meds are not working so good (did the bupe patch before this) and I don't like the idea of more Oxy. What stronger med could I get and take less of?

Best wishes

Jake

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48 Replies

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  • Oxycodone is twice strength of morphine, some say 1.5 X.

    Maybe look at adjuncts like antidepressants, anticonvulsants etc. Try pacing, pain management courses etc.

  • Hi Jake........know exactly how you feel,& am sorry for your suffering because that's what it is ...I know!!! How do you take your meds. & maybe a chat with your GP might help . Good 😊 luck

    Peggy .

  • I wish there was an answer but I have not found one. Meditation works in giving coping skills. Helps to control that spiralling off into dispair which does make the pain feel worse.

    Doing the physio every day without fail is important as strength in your muscles helps your body to support the back and stretching g helps to keep things moving.

    But ultimately you are probably, like so many of us, left with making the best you can out of the life you can live.

    Talk to a pain clinic doctor or your own GP about changing medication maybe. Sometimes the body becomes used to one type and it does not work as effectively. A different type can give relief.

    I wish I had an answer then I would apply it to myself.

    Best of luck

    Dee

  • The best that I have found is a combination of Fentanyl , Tramadol and Gabapentin. IF it suits you, you can take the Fent. patch to give a constant level, and Actiq (Oral Fent.) to boost it. The Tramadol and Gabapentin also give a periodic boost, in my experience. I'm not actually pain free, but the pain is at a level that I can just about live with. Unfortunately, the level of pain relief that would actually make me pain free, would also knock me out, and I wouldn't be able to do anything, so I have to strike a balance. Ask your GP for a referral to the local Pain Clinic, and see if they have anything that might help you better. Sometimes being able to control it, rather than it controlling you, is the best that we can expect, and the best drugs may not work for you. You do need to try things out, and be prepared to experiment to see what works. I am told that cannabis is helpful, but the artificial cannabinoids I was prescribed were not that good, and I am too law abiding to try the real thing! If only that was made legal we would have what I am told is the best natural pain killer out there. We must be willing to campaign for it's legalisation, but until then you risk being labelled a criminal if you use it.

  • Hi, I am on oral fentanyl, but have to get it privately as I'm told the NHS won't allow it, no NHS consultant i've been too is willing to prescribe actiq as it is meant to only be for cancer. Do you mind naming the doctor who recommends it for you and also what dose you take ?

    Regards

    Dan

  • Thank you. Were you saying you would name the Dr you have seen in private?

  • Actiq should ONLY be given once you are on patches, it is for breakthrough pain, and whoever is giving you Actiq without patches should be reported. I was put on Durogesic some years ago, with Actiq as a boost up to 3x daily, and my GP prescribes it. The Dose I take is rather large, because I am large and in a LOT of pain, as I have a pain disorder. Don't judge what you should take by me - my dose would probably kill you!!

    Elaine

  • One of the top specialists in the country prescribes it to me, I have tried all the other drugs. I'm aware that instant release fentanyl is only licensed for cancer.

    My long acting opioid is OxyContin. It was my request for instant release fentanyl, I know the risks, I know it's not licenced for non malignant pain and I know that compared to other drugs tolerance increases far quicker.

    So I dont think my consultant needs reporting, and will continue to pay the £600 ph he charges plus other costs to have a life. I wasn't looking for judgment just how to get it on the NHS so thanks for upsetting me.

    You mention the dose you take is large, that you are in a LOT of pain as you have a pain disorder.

    What do you think I have, and others on this site. You are not the only one with pain, what do you think I take instant release fentanyl for ? For a buzz ?

  • Hey, I'm sorry that happened and on my post. Not sure how another person was able upset you like that. I'm not here to upset anyone. What you have seen is how harsh other people can be. It's their anger and it will come out at any time on here.

    I don't think it's ok and there is no excuse. I hope you feel better soon, and find the info you are looking for.

  • I am in the US. I have suffered with chronic pain for 20 years. Over the past 10 years, I have been on Actiq, Fentora and for the last three years Subsys. They all gave me back some quality of life. Now, due to circumstances beyond my control, I can no longer get these fast acting fentanyl meds any more. I never had any problems with them, I signed the appropriate contracts and submitted to the unannounced urine tests. I am back where I was years ago, trying different pain meds, suffering with side effects and increased pain. The pharmaceutical companies only got FDA approval for pain from cancer, however studies done show the effectiveness for people suffering from chronic pain. To know there is medicine that can help me but I cannot get it is incredibly frustrating. Living with pain is a lonely life. My heart goes out to anyone having to deal with this condition.

  • Thanks. I have heard of Fentanyl. I use tramadol now with what I have. Do you find Fentanyl less constipating?

  • Fentanyl is very good- for me. I don't get many side effects, although I am fairly constipated because about three quarters of everything I take makes you so. Morphine was tried, but that just knocks me out, and I can see no point in being pain free, but asleep. I take enough fentanyl to allow me to move about, and function, any more could control the pain better, but at the cost of my independence, so I'm happy where I am now. However, I do have to do a daily routine check of my body, to identify any problems, and I am warned that if I were to get something like appendicitis, I may not know it until it is a serious thing, like a burst appendix, and septicaemia. Not good, but a trade off I am prepared to make.

  • Stronger meds is only going to work for a short while. By killing pain and discomfort they prevent you from being aware of when you damage yourself.

    You need to investigate how you actually work in the moving department. You need to develop skills to do things in a way that does not damage yourself.

    You need to be aware that certain movements will cause inflammation. So what movements can I do to avoid inflammation or reduce inflammation.

    Sleep deprivation is a factor in loss of fine movement control. So are you getting enough sleep. Research indicates that the brain gets rid of waste products when sleeping not when awake. So their needs to be investigation on sleep issues. This is something you must determine for yourself.

    The brain has an influence on movement control. The spinal reflexes also have an influence on movement control, pain and discomfort. Conscious thought is a lot slower than spinal reflexes. A spinal reflex happens before the conscious thought is aware that a spinal reflex has taken place. You need to investigate on yourself how to bring spinal reflex and conscious control into harmony.

    An Alexander Teacher will help you become aware of things that you need to be aware of. Meditation and mindfulness will provide tools for investigating yourself.

    A doctor cannot investigate yourself only you can do that by observing, gaining experience, doing experiments and drawing conclusions as to what works to improve quality of life and what does not work in improving quality of life.

    Hope this helps.

  • Thanks John. I have been doing experiments for the last 18 months. I have sleep medications and keep an eye on that. It's a good point you make about it. I'm aware of a few thing that cause flare ups. But there are just days where there is no trigger and these days I'm in agony. Trying to meditate when you are in agony is not possible for me! When the pain is really bad, its serious as nothing can be done as A&E, they will do nothing. I really fear those days and that's why I would like something stronger. I don't want to have to OD (I have had to do this at times) in order to cope.

  • You say: "Trying to meditate when you are in agony is not possible for me!". Actually it is. There are no rules in meditation that say you must have only a particular mindset. The meditation mindset varies from occasion to occasion. You can meditate lying on the floor with a book under the head and knees bent. Here full concentration is on the count. This helps gives relief from pain. The pain is still there, but it loses its edge. I have had to do this a few times.

    The trigger for flareups can be what you did 24 hours previously. Not much one can do about this other than wait patiently for things to ease. Not easy because there are emotional hangups about pain returning and disruption to the day's plans.

    What experiments have you been doing?

  • Hold on. There is something odd about what you wrote. I said that trying to meditate was not possible for me when I was in agony. You then just said 'it is'. John, only I can know what works for me or does not.

    In terms of practice over the 18 months, I have tried things like: Keeping notes on what things cause pain, doing a daily mood diary, 6 months of Physio that I now do twice a day, massage chair, swimming, sleeping in other ways, gabapentin, buprenphine tablets and patch, looking at posture, anxiety meds, ringing the helpline, suicide prevention.

    Often I just wake up in severe pain. Clearly, our pain is not the same. If I could turn off the pain and meditate I would. When the pain is going round and round, only hot water or strong pain meds give me relief.

    If I move....it can get to a point where nothing I take will stop the pain.

    This is when I get very sad.

  • Thanks for the reply. The meaning of words can be troublesome. What is meditation and what it means with its subtleties for me may have a different understanding for you.

    Under one meaning it would be impossible to meditate when in pain. Using a different meaning it is.

    I am not disagreeing with your experience. I was trying to get across rather poorly that there is a range of possibilities as to what meditation is.

    I have no idea what the definition of strong pain is. I cope and have found that trying to ascertain how strong my pain is suddenly makes the pain much worse. I have meditated into strong pain where all my concentration has been on the breathing and the counting. I have done this while waiting to see the dentist with strong toothache or at A&E with very bad back pain.

  • I think you made it clear there when you said you don't know what strong pain is. Most of us would agree here what strong pain is if we have had it. You don't want to live it. I'm on pills stronger than morphine, I would think that's where strong pain starts.

  • Words are tricky. If you fight pain and do every thing to avoid it then you end up with pain you do not want to live with. If you allow it to be then it is an irritation that prevents you from doing certain things. You do other things instead. It is a mind technique skill.

    Pain is in the body and I have learnt certain skills that reduce strong pain as you call it to a lower level. The skills is obtained from Alexander Technique, meditation, mindfulness and body movement subtleties. I study how the body is designed to move in depth. I have McTimony chiropractic treatment on a regular basis.

    The skills I have have taken me years to develop. When dealing with subtleties the language of speaking and of writing fails. How tight you clench your fist or what you do with the eyes can make a considerable difference in pain level. This because so many things are interconnected. You are searching for the interconnections and looking for ways to reduce the body and mind stress below the body engineering system breakdown point. This is a matter of continual investigation because the weather can cause a number of changes in the way the body behaves.

  • John, the way you go about your pain sounds good for you and most complicated. I'm delighted that YOU have done these things and they have worked. All the best.

  • Do you know what your pain is caused by, and how a flare up is triggered? Is there an underlying medical problem, or is the pain itself the problem? Before I was placed on pain meds, I had a full range of medical tests, including a Neurologist, a Psychiatrist, and several other specialities. Eventually, I found the diagnosis, by chance, and found that it was too late to treat, I just had to live with it, and treat it symptomatically. Taking a minor OD risks you being treated as a medication "seeker", and that will mean that your medical problem is never diagnosed, or treated. It also risks Liver, kidney, or other organ damage, and even death, so Never, Never try it unless you are actually intending to kill yourself! It will NOT get you anywhere in terms of treatment.

    If you do not have a diagnosis of WHY you are in pain, go back to your GP, and explain that this can not continue, and ask for a plan to find out the source. It may actually be the meds that you are taking, if, for example, you are taking pain meds then stopping them! This is called rebound pain, and you may need to stop everything, get "clean", and then start again with medication, at a low basic dose, and build up to see what it achieves. Combinations taken unwisely could actually make you worse, and I suspect that your meds are probably badly controlled because you are on Actiq, but not on Fentanyl patches. I know this is scary to contemplate, but if you have a good GP supporting you you can manage it - I did. However, If your GP is unsympathetic, find a new one. Also get a referral to the Pain Clinic at the hospital. They can help considerably, and if meds are needed they will ensure that they are given correctly.

    Elaine

  • Hi Elaine. I have over loaded facet joints. MRI is fine.

    the Physio I have had for last 6 months has been good (better than the Physio I had before that).

    I do the exercises each day and they are not a pleasant feeling. I do them and I remain in a better way, but not

    free from pain or medication in any way. If I stop my exercises my pain gets much much worse. So, I'm where I started two years ago. No worse as long as I do the horrible exercises each morning and night and use Oxy each day. With the odd days where the pain is just awful and there is no trigger.

  • Johnsmith...you are completely right when you say "a person deals with different pain differently" but in most cases it's a different type of pain~a different body part and the type of pain I had before medication I could no more read what you have read then try to listen/watch something on TV.

    Such as, what you just described as changing the way somebody lifts something or moves a certain way...usually means BACK ISSUES, when in my situation, I deal with SEVERE CHRONIC DAILY MIGRAINE & that's not going to help AT ALL. Nothing does, in my case, not even the tried-and-true migraine meds... believe me I've been through it for 30 plus years.

    So in SOME cases (such as mine) Because I also have a very messed up stomach outlet that is completely messed up from scar tissue of healed ulcers from dealing with the SEVERE DAILY MIGRAINES that doctors wouldn't treat & I had to take huge, daily amounts of Excedrin.

    Between that pain and the daily migraines, I have been on Long-Acting Morphine for nearly 18 years & when I first found GOOD, COMPETENT PAIN care (about 20 years into my DAILY SEVERE MIGRAINES)

    I even had to take a second LONG-ACTING OPIATE and something for breakthrough pain & now I manage it with the Long-acting Morphine (and even that is that a way LOWER dose then in the beginning) and a small dose of Xanax...so it's not always true that once someone takes a narcotic medicine that a person's dose requirement goes up & also different pain requirements may require stronger meds~different meds & how you deal with pain, so that's great, but I'm sure these people have already surpassed all of this working out or whatever you're talking about with Chiropractic care etc. I guess what I'm saying is can't "ONE SIZE DOES NOT FIT ALL"

    I would think that even you would agree with that!!

  • Hi

    SEVERE CHRONIC DAILY MIGRAINE. A long time ago before I had my road traffic accident I used to teach people how not to have migraines. A certain type of migraine starts off by muscles beginning to clamp in the neck and the head begins to arch back. This may happen in your case or it may not.

    See an Alexander Teacher. If you have this type of migraine the Alexander Teacher can help you stop the head arching back and the muscles clamping. You may ask why your doctor knows nothing about this. The doctor is too ready to prescribe pills rather than observe how the muscular system is functioning.

    Muscles are controlled to a certain extent by the brain. However we can develop muscular habits which we are unaware of which do not do us much good. The body is an engineering system with feedbacks. Sometimes the feedbacks send us in a direction that is not good and thus requires changing.

    Hope you are able to investigate to see if my suggestion is sound or not.

  • I'm pretty sure I was taught that technique. About 25 years ago, when my original PCP was sending me everywhere to get them checked out & was sent for biofeedback. They taught me relaxation skills, which I did faithfully at home (even on vacation!) it to be honest it did help my neck pain, but it didn't help the ones that I get at the very core of my brain. Those are the ones that after 20 years of trying any & everything (even a week-long stay at Stanford here in California) my PCP said "There's nothing else I can do for you"

    He still felt I was too young at nearly 40 & trying MANY TECHNIQUES & MEDS to prescribe much for pain & so he let me go.

    That's when I found my amazing, knowledgeable pain doctor (who travels around speaking at various pain management seminars & helped to write the California pain laws) & he's the one who tried me on the various long-acting opiate therapy's (this was 18 years ago) & they are for the most part managed, however by that time I had 20 years worth of damage done to my stomach from over usage of Excedrin trying to live & function, so it kinda sucks but thank you I understand what you're talking about When you mention the Alexander technique & the neck!

  • Thanks for the reply. Feel a bit humbled writing to someone with so much experience.

    Alexander Technique is not about relaxation. It is about changing muscular habits of doing things. You have already discovered relaxation does not work. When one part is over relaxed another part over tenses to compensate.

    There are many many spinal feedbacks in the body all of which has some sort of input.

    Try and see if you can find an Alexander Teacher of 15 years experience. Even if they can't fix your problem. They may help give you some skills to reduce the discomfort. That is all we can hope for is learning some skills to reduce the discomfort.

  • Johnsmith...I can't tell if you're just trying to help people or act like your way to "fix" pain will help every type of pain known to mankind! Because I told that whatever the name of the relaxation technique I was taught YEARS ago DID help the pain in the back of my neck...you understood that it DIDN'T help & switched my pain to another area...I have no idea where you got that from BUT my STOMACH pain that I ended up with I got from taking excessive amounts of Excedrin from age 18-38.

    The SEVERE migraine pain in the CORE of my brain that couldn't be helped as easily as my neck pain (which I was able to help with relaxation!!) Ended up needing to be medicated because as I said from age 18 to 38 that's 20 years of trying a whole bunch of things that did not work...so then that brings me from age 38 to 55, in which I deal that head pain with Long-Acting Morphine & Xanax (QUITE WELL THANK YOU!!)

    So I can't tell if you just want to think your way is the ONLY WAY...but once again "ONE SIZE DOES NOT FIT ALL!!" Maybe you should try to teach a class to students who are healthy & can take in your information & use it at a chiropractic practice where it's not as severe pain as needing opiate therapy. Have a good day!

    BTW...Awake-Jake... I apologize if you feel like I overstepped. I was trying to tell this Johnsmith that what he's talking about is not for people with severe pain such as ourselves 🤔

  • Until you try what I am talking about then you cannot know or not know whether it helps or not. It is about investigation and repeat investigation because things keep changing.

    I work hard not to get the severe pain. It does not always work. When it does not work I ask the question what is I am doing that causes the pain?

  • From what I have already posted, it's clear I have tried the things you suggest. And...will always try out new things. The main point was, I was not able to meditate when I was in agony. I doubt many people can. YES, we know you can John.

  • Johnsmith...OK I can see that you're one of those know-it-all "right fighters" & your way is the one true right way for you & everybody. Thank you once again but it doesn't work for me, I've been through it, for years, decades actually... so I know what does and does not work.

  • I find I'm not able to 'meditate' of be mindful when I'm not in SEVERE pain. I would think most people feel this way. Normal people anyway.

  • Thanks for saying it. To be fair, with all the words and unnecessary complexity, it's been quite exhausting just responding. In all this, I also feel that my pain and experience has been sidestepped. I feel invalidated.

  • Fentanyl patches or suckers but very few doctors prescribe it...if you're on a medication that was working your best chances of pain relief are if they will up the dose...My doctor is wanting to turn towards the sobpoxone patch or under the tongue pill...this after I've been on long-acting morphine and fairly stable for nearly eighteen years & I'm not so sure I want to make that switch because he says that he'll have to write me as opiate dependent and now if it doesn't work I'm I stuck with that label?? I'm thinking he's giving me that as an only option that or leave him how did it work for you??

  • I was given the sobpoxone pill BEFORE oxy. I needed to go onto OXY in order to treat my pain as OXY was doing better at the higher dose.

  • Awake-Jake...so the Suboxone didn't work on your pain at all??

  • It did work for a while. The best bit is it worked for ages. I needed to try something else as it was just not enough. Who knows in time, it may be good again. It's worth a go as it's also less constipating. One 2mg pill lasted 24 sometimes.

  • Awake-Jake...Thanks for your info and help! My main concern was that my doctor said in order for him to prescribe it he would have to write the reason as being "opiate dependent" & couldn't write it for chronic daily headache pain, which confused me because from a few things that I read about suboxone is that doctors were writing it for pain. I'll have to ask him that when I see him in a couple of weeks, because I don't want that to be a sticking point should it not work and then have a problem getting back on long-acting morphine. So we'll see, I have a few questions!

  • They do use it for opiate dependent people , but it can also be given so that one does not become dependent on other things! You can argue that you would rather not get addicted to opiates. You can get this med. One I was in severe pain he went straight to this drug. Other Dr's thought me coming off it was 'a good move' as if I was on something much stronger. The reality is Oxy is more addictive and lethal. It works for me, but I have days where it's not enough. Good luck. You must fight for what you want. I'm in your corner!

  • Thanks...this is where I have the problem with my doctor...I've been on long-acting morphine for almost 18 years & when I very first started, I was on a huge dose just because my pain was SO out of control for 20 years.

    From that huge dose, I've gone down to what I'm on now which is only a little over the dose they'd like to give people per day...which is 90 milligrams of morphine (or the equivalent) well I take 90 milligrams of "long-acting" morphine in the morning & 90 in the evening so I'm just 90 off. But I'm on long-acting, so not all 90 mgs. goes into my system at once. Don't get that one.

    I don't understand the big deal especially after all these years and my doctor says "well people can still overdose after being on it that long" and I just looked at him & said "I highly doubt it & gave him that look like "Please, really...come on!"

    So in my case they want to do the opposite with me as they did with you...I've been on something for pain for many years and they want to go backwards I guess partly because of all of the drug addicts that are overdosing they're more worried about them and their health then ours dealing with chronic pain and trying to function and have some type of life.

    Such is life!

  • Look, it's YOUR life. Not such is life. If you really want to try this drug ask for it. Fight for it, it's like any 'case'. Just build up your argument and get some facts as to why you feel you should give it a try. I will be here.

  • Awake-Jake...you're absolutely right!! I've been keeping a list going I have four five questions that I want to ask him about "what happens if this happens" or "what happens if that happens" you know I want to know because the way he talks about it you'd think he were a Suboxone salesman!! Oh you'll have more energy, we can go up as high a dose as you need without worrying about overdosing. And it all sounds great but not really sure it's going to work for severe pain!!?? Everything opposite of what I was told by Dr. Forest Tennant...18 years ago, who's an AMAZING pain doctor here in California who has helped write the pain laws here. He taught me that as long as you're taking it for pain (it takes the amount it takes) and a pharmacist told my mom that when you take opiates for pain, the pain actually "eats up the medication" I guess you could say, so we don't get high & that makes sense to me because I never get high...at the right dose I'm actually almost pain-free...I don't think I'll ever be pain-free but good enough!! Thanks again!

  • Hi! Try not to take too many opinions from random people, even me. Take your Dr's advice and if 'you feel' you want something after doing your own research make sure you fight for it. But....get facts before you go and fight for it.

  • I suffer from pain from spinal stenosis. Last year I had injections in my spine and my spinal pain has been almost manageable. It acts up occasionally but if I work with it right away with RICE it feels better soon.

    because I also have Parkinsons,arthritis,fibromyalgia etc. I use tramacetT3) and just started morphine once a day. Keeping active and being around other people and having fun does help.

    I'M sorry I don't know what other drugs you may take but the injection are worked for me. Do you have a pain clinic nearby?

    Cathy

  • Hi Cathy. I just got discharged from my Physio that was part of a pain clinic. They never felt that I needed further help. When I was asked my my goal was. I said to get off meds. They did not have an answer for that. I said, I have no problem with walking if I'm on drugs. So, it's not a distance goal. They did not feel I needed the spine thing yet. I did say I didn't like the idea of it or the risk.

  • Do you get any side affects or hallunications for taking the Oxycodone and Oxycontin ?

  • I don't get any hallucinations Jenny. Both are fine. The constipation is awful! If you don't watch it and take all the other stuff to reduce it, you could damage yourself with such dry and large stools. We... have all had to learn this the hard way....I bet!

  • Jake, I don't know your age but I am on pain meds for MS nerve pain and my husband has been on meds for years for his back pain. Over the past two years, his doctor has been lowering his slightly on each refill. He is now almost completely off and his pain level is still the same. Your body adjusts to the medication and more usually really does no better. As we get older, we are over 50 now, it really becomes harmful to your body. I would try physical therapy, bio-feed back, acupuncture, supplements and other alternative methods.

  • Thanks for the post. I'm a little annoyed with you. I have said in my post a few times I have done Physical therapy for 6 months and I'm not having to do this twice a day in order to 'not go back' and the pain is still bad. Please read what I'm writing :(

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