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Still not enough

dmoonchildddmoonchild Posts: 383
edited 06/11/2012 - 8:25 AM in Pain Management
My pain medicine is still not enough. I started seeing my new PM Dr in July. We started at 30mg oxycodone 2 a day along with vicodin 7.5 4 a day ( with a muscle relaxer and lunesta). Each time Ive gone back (monthly) he has increased my breakthru meds. Oxycodone 5mg and then oxycodone 10mg 3 a day which Im on now. Its just not nearly enough. Last time I cried in his office. I HATE when I do that! I ve asked to have the oxycontin 3 times a day and he said no. He usually asks me what I want to do. I dont know whether to increase the OXycontin or breakthru meds. Any suggestions?
Does one ususally max out on the Oxy before going for the patch or methodone? Im also going to ask my other PM about a Spinal cord stimulator. I cant go thru another Epi Injection if they are all going to be like my last one. Im still suffering from that one.
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Comments

  • If you can add in other therapies. There are a few that are allowed with oxycodone. This is under utilised. Look up cancer pain treatments and pain management.

    I add in to my regime and it makes a massive difference. I titrate all the doses (under supervison) which has meant I have stayed on a moderate dose of oxy and add in according to my pain levels before I increase the oxy.

    Paracetamol and ibubrofen are the 2 meds that you can add they both work by enhancing the opiate without increasing actual opiate dose.
    But you do need to be strict with dosing and careful not to take too many.

    Make sure you get professional advice but there is a way forward for you.

    Take care
  • Dmoon,
    I am a bit concerned when I read your posts. :S I am going to be honest with you here, and hope that you will take what I am saying with the good intent that it is being sent. :|
    Every post I have read about from you in regard to pain meds has been how they are never enough. :S I don't know what it is that you are hoping for, from pain management, but to think /hope to be painfree , with spinal problems is not realistic. :<
    You, honestly are on a good amount of meds, especially for someone who has not been through surgery, 110 mg of oxycodone a day, is alot of it. @) Adding another 40 mg dose of oxycontin is going to put you at a place that most of us have only been on after going through surgery and several months if not a year or more of recovery. #o
    I am worried for you, and about you and how you deal with pain, and hoping that there is not some other reason that the pain meds don't seem to work so well for you. :|
    I know from your previous posts that you have been on several strong pain meds, and none of those offered you any relief either. :??
    When you say your current dose is "not nearly enough", what do you mean by that? :?? What dose would be nearly enough? :?? What dose do you feel that you need to be on in order for you to have less pain? :??
    I am concerned that you are headed down a road that I don't think that you want to go down, and that you may be using the pain meds to cover other pain, rather than physical. =(( I am concerned about you becoming addicted to the pain meds. :|
    Most people on the same dosage of medications that you are currently taking would have at least a moderate amount of pain relief. Are you taking the pain meds exactly as directed by your doctor or do you adjust your dosage or timing of dosage on your own? :?? Do you take extra because you feel that more will give you "better" pain relief? :??
    You do realize that taking the breakthrough dose every time you are allowed to take it will make it not effective for those times when you are experiencing legitmate breakthrough pain? Leaving you with nothing to bring those extra high pain levels down to a tolerable level? /:)
    What else do you do to manage the pain, beside rely on the meds? What physical excercise are you doing to help improve your overall muscle strength? Are you in PT? What about using other modalities to help with the pain levels? :??
    I can't recall now if you have ever posted what exactly is supposed to be wrong with your back, so if you won't mind, please refresh my memory so that maybe I or someone else can make some other suggestions that might help you.
    As far as a scs goes, it just seems that you are rushing things a bit, most pm's won't even go there with a patient until they #1, have a specific problem that they know can not be addressed through surgery or PT or other means, and #2, that the pain meds are not a realistic , long term treatment option, and they are sure that there is nerve damage/nerve injury that will not recover on it's own, before offering that option. SCS will not help mechanical pain, it will help neuropathic pain, but only if it is truly neuropathic, and most neuropathic pain means that there is compression of a nerve root, nerve rootlet or injury of some sort that won't heal on it's own.
    Anyway, as I said, I hope that you take this in the spirit it is intended, and that is to help you.
    Take care,
    Sandi
  • Thank you for the advice. I am not expecting to be pain free and often ask myself, how much pain relief can be expected from meds? I cry everyday because of the pain. I set my alarm clock at 5 am so I can take my oxycontin. I have to lay in bed for an hour for it to work before I can attempt to get out of bed. I take my meds exactly as prescribed. The pain makes me sweat, fell sick to my stomack and makes my heart hurt. I am still working. I have to get up and lay on the floor every 10 min. After working, I go home and all I can do is rest my back. I try to exercises but most days it hurts too much. Then the spasms start and I cant move. My Dr says no therapy now as I am currently getting EPI injections every 3 months or so. The last injection made me sick for 2 weeks. I was denied surgery by 3 Drs because there was too much damage. I have 3 herniated disks, stenosis and DDD.
  • I take ms contin 60 mg twice a day and rarely every 3 or 4 days take a percocet. Are you on a slow release medication? I found ms contin once a day not enough to cover the nighttime so then I was put on ms contin 30 mg twice day then my Dr. put me on ms contin every 6 hours but the pm Dr. said it's better to take 60mg twice a day. I think a slow release would be more helpful for you overnight so you wouldn't wake up in so much pain. Just imo. Most Drs don't want to give fast acting narcs. They usually give extended relief at a higher dose with a break through med. I hope you can find some relief. Take care . Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I read your post and I was wondering how come you were denied surgery? The conditions you listed are operable, and I was curious as to how long have you been struggling with this pain? I had a TLIF and it was my second surgery, but unfortunately neither has worked for me. I'm on Fentanyl, Norco, and other meds to handle muscle spasms and nerve pain. And I still struggle with pain. I guess it's something I'll have to deal with and realize I probably won't be pain free. I really hope the doctors figure out a way to make you feel better and that you have a success outcome, whatever treatment you may have in the future.
  • The 3 surgeons I went to said they were not willing to take a chance on paralyzing me. They there was far too much damage all thru my spine. My husband came with me for thoses appointmnets because I usually end up crying halfway thu and I need someone with me to listen to the Dr and the reason why they wont operate. I did get an appointment at a very good hospital with the top surgeon there. Im crossing my fingers he can help me.
  • I didn't realize that and I am sorry this has happened to you. I hope this next surgeon can give you some kind of option. Being a mom, I know how difficult it is to struggle with your pain and raise your children. Since I can't do much, my priority is taking care of my family and seeing that the household runs somewhat smoothly. I wish you and your family the very best.
  • Thanks for all of your suggestions and help. Im a little freightened by what sandi said. Am I becomming addicted to these meds? I have tried to be very careful and follow directions, make every appointment with my Dr. I do not get high whatsoever from these meds. They do make a huge difference but Im just not sure how much pain relief I can expect from meds alone. People that know me see me struggle with the pain and tell me to tell the Dr how much pain Im really in and not to sugar coat it. Im looking to get enough relief to 1)keep working 2) take care of my family..make dinner...give baths to the kids 3) not be so cranky and have to be in bed all weekend. I am asking too much?
  • Dmoonchild. Here's another possible explanation. I have neuropathic pain, coming from a damaged L5 nerve. Narcotic pain medication doesn't really help nerve pain. On an ordinary day, I take my Dilaudid ( a short-acting narcotic and the reason I take this is a whole other story)and it relieves most or all of my pain. If I am having a pain flare, the same dilaudid does nothing--it doesn't evenmake a dent in the pain. I truly believe (I have not tried this) that if I were to double or triple the dosage it would make no difference. My point is that nerve pain does not respond that great to narcotics. Maybe you've gone over all of this already and I didn't see it as I am going to finish this post and get ready for work. Ususally, drugs like Neurontin and Lyrica are used for nerve pain and they really help some people. But if like me, nerve pain is your problem, medical science is only now really figuring out how that all works and how it can be treated. So, it is possible that tons of narcotics wouldn't relieve your nerve pain but taking more would not be the answer and if its not helping, why take it?
  • I have come to the realization that no matter what I take (Fentanyl, Norco, Cymbablta, Zanaflex, etc.) that I will not be pain free. I will always have constant pain and I know that these meds I'm on will hopefully keep it in a bearable range. It's hard to accept that I can't perform multiple tasks in one day. For me it is, "I'll try to tackle this today, and try to get to the other tomorrow." It's a hard pill to swallow, especially if you are young, or in the prime of your life. There is no single cure for chronic pain. It's a condition that you have to manage, just like diabetes or heart disease.
  • It is very hard for me to accept. This Pain, is....well PAINFUL :))(
    I do think I have nerve damage/pain. My Dr did mention the nerve meds. I was on neurontin for a while but got bad headaches, chestpain and blurry vision. I have been reading alot about Topamax. I may ask my Dr about that next Tuesdy when I see him again. Ive also read about Lyrica but I do NOT want to gain any more weight.
  • Hi Dmoon,
    Thanks for your reply. I apologize for not responding. I've been having a rough few days myself. :|
    Anyway, one of the side effects of oxycodone is the sweating. I know because I have dealt with it myself and I hated it. If I was close to my next dose, you could bank on the sweating starting and while I thought that it was the pain levels, it was truly the oxycodone. :| If you are taking it at 5 am, I am guessing that you are taking it also at 5 pm for the 12 hour dosing? You might try taking it a bit later in the evening, so that you have some time left on the 12 hour dosing schedule so that you can get up with less pain, instead of having to wait to get up an hour in the morning.
    As I said in my previous post, taking the breakthrough meds regularly, or close to regularly, will result in them not working for you, as well , when you need them to. Like in the a.m. when you are getting up. It might work better for you to change the timing of your long acting and have you take a short acting (breakthrough) med to help you get up and moving around faster in the morning.
    I also have breakthrough meds and I try to stay away from them until the pain levels are really up there, otherwise, taking them when the pain is escalating but not truly debilitating, does nothing for me when they are debilitating. If that makes sense to you?
    Some other things that you can do to help ease some of the pain is to take a sock ( tube type) and fill it with instant rice.....heat it in the microwave for 2 minutes and use it in the areas that hurt....you'd be surprised at the relief a little heat can bring. Then a hot shower in the morning helps further. Or ice if that works better for you..
    What about using a TENS unit? Your PM can prescribe one for you. It might help to bring the pain levels in check some. It works similar to how a scs works but it is external. Some get a lot of relief from that.
    Motrin or aleve also works wonders for some of us. For some reason, adding those meds to our narcotic meds seems to bring some boosted relief. Especially during the really busy times of the days.
    You may not be ready for PT yet, but you do have to do something to keep the muscles as strong as they can be. :)
    Believe me, I do know how painful this is, and how hard it is to keep going. I have 4 children myself, two of them are young boys, and are a handful.
    It may be that you do need another adjustment in your meds, I am not a doctor and don't know the specifics of your condition nor the severity of it. But I do know that we also have to come to a point where there is a certain level of pain that we can function ( not at 100% by any means) with, and that our bodies learn to accept. :S The rest of it can be kept in check with pain meds if they are needed, but we can not rely on pain meds to kill all of the pain, so that we can function as we did before our problems began.
    Pain medication isn't designed to take away all of the pain that we experience. Some of it is a good thing to have, it lets us know if we are pushing too far or too hard, and our bbodies are in danger of being hurt if we continue, but there is a certain amount that we can tolerate and still function fairly well with as well.....and we have to learn to balance those two in order to live our lives as best we can. If any of that makes sense to you.
    I am concerned because I read you going from one med to another in search of being pain free, and then none of the new meds seems to be the ticket/answer, so you are looking at new ideas and methods to find pain free...I am not telling you to give up by any means, but what I am trying to convey to you and anyone else who is suffering is that you have to balance the relief that you get from the meds, with understanding that you may not ever be completely free from pain , so you have to use as many other non medication routes as possible to help keep the pain in check and to always be wary of relying too much on the meds themselves.
    The ESI's that you are getting, you also need to be careful of. They can cause problems for some . You should only be getting three injections during the course of one year I believe is the practice. I never got any relief from them, so I don't do them anymore.
    I hope that this new surgeon that you are seeing is going to be able to help you. What levels are these problems at? Mine were from L3 down, so I am curious. I had pretty severe stenosis at all three levels L3-4, L4-5, L5-S1 and DDD with vaccuum phenonema at L4-5,but the DDD is at all levels, and spondylolysthesis at L4-5, facet problems, arthritis throughout all of that too.....so I am curious who said that they would paralyze you if they did operate?
    Seems to me that if the stenosis is that severe that you run more risk of paralysis by not doing anything? Mine was pinching off the spinal nerves at three levels when they did the myelogram...
    Anyway, take care and just be careful....
    Sandi
  • Hi again Dmoon,
    I agree with the poster who mentioned nerve pain. If you have stenosis, then there is a good chance there is nerve compression, at the least. Lyrica, Topamax, Neurontin, etc all work well to help that. So do some of the older, tricyclic anti depressants.
    You may find that being on Lyrica does a wonderful job of handling neuropathic pain. I understand not wanting to gain any weight on it, but I know that for me, I was on it after my first surgery, and felt after some time that it wasn't working so well anymore , so I went off it....I found out very shortly after trying a couple of other meds that it worked far better than I thought it did. I also gained some weight, but it is well worth the relief it gives from the neuro pain.
    I am also at the maximum daily dosage of it, so my weight gain seems to coincide with the dosage. When I was at lower doses, I didn't gain weight at all. And many people find that even if they do gain, they level off once they are on a stable dose.
    If you do try Topamax, please be very, very careful with it. It can cause a loss of appetite, which in itself is a problem. No one should loose their appetite completely, which is what happened to me and I lost 40 pounds ( mostly water gain from Lyrica ) in less than a month. It needs to be tapered, very, very slowly. Starting doses are around 25 mg, and increased in small amounts over several weeks to see if there are going to be any side effects.
    You were on a low dose of Neurontin, and so maybe that is not one that you can take, but there are several others that might help, much better than any of the narcotic drugs that you are currently trying.
    Give them a shot, after discussing them with your PM DMoon.....you might just find , like many of us have that neuro pain isn't controlled at all by narcotics, so between the narcotic meds for the mechanical pain and neuro meds for the nerve pain, you finally are getting better pain control....
    Sandi
  • Hi D'Moon. I don't think your doc would appreciate your demanding certain drugs. He or she is, after all, the expert BUT I was recently given a drug for nerve pain called Zonisamide that I believe is an anti-seizure drug, that is, in the same family as Neurontin and Lyrica and one of the side effects is weight loss. In fact, on the package insert, it said this drug is also used for obesity. Now, I am within the normal weight range for my height though on the high side of normal but I really appreciated my doc taking the weight gain thing into account. All of us who suffer from chronic pain have reduced our activity and have gained weight. I sometimes thought "What is wrong with you. (I talk to myself) "You have this horrible pain and you're worried about gaining weight???" But I guess we all do. Its one of the losses we experience and grieve as a result of our injuries. Hang in there, girl. You'll figure it out. Susan.
  • dilaurodilauro ConnecticutPosts: 9,740
    Being a 32+ year person suffering with Chronic Pain, I can tell you first hand there will not be a type of pain medication that is going to 'take care' of your pain. Also over a period of time, you body will start to adjust to the levels of pain medications. Lets say Week #1 you take 2 vicodin a day to manage your problem, by Week #7, you may have to start taking 8 vicodin's a day to achieve that same level of pain relief

    I am a believer in using pain medications to help with chronic pain, but I am also more of a believer in that you need the correct 'blend' of medications and treatments to really manage chronic pain... And even then, the pain will not disappear.
    Besides the Pain medications, these could also be used to control a situation:
    - Nerve Pain medication such as Neurontin or Lyrica
    - Muscle relaxers such as Zanaflex, Soma, or Rhobaxin
    - Sleep Aids such as ambien or lunesta
    - Physical and Aqua Therapy
    - Massage Therapy
    - Passive Traction
    - Acunpuncture
    - Ultrasound and/or Home Tens units

    When you put all of this together, you will know that you have examined each area and are doing all the things that you need to to control and manage your pain.
    Increasing Narcotic Pain medications should not be the only route considered. Doctors will know based on medical tests and clinical observation if higher dosages would be justified.

    I have read so many times on these posts that 'Surgery is not an option' When I hear that, I want to know more, the details behind this and exactly why surgery is not being considered. There are doctors that select surgery as a last resort, while there are others that would operate after you first visit to them. There are not that many spinal situations that surgery is not an option.

    I would go for many different opinions to make sure there is total agreement. Realize that there are some doctors that are not comfortable with a given procedure, so they would say surgery is not an option

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Well said RON!! Have you only seen spinal surgeons or specialist or have you also seen Neurosurgeons? My NS is wonderful. He did my fusion and doesn't want to do another surgery yet he thinks I need another plate through my back. My first surgery was through my belly. So by the first of the year I should have an answer. Keep trying and eventually you will find a doctor that you feel is doing something for you!!!! Just like RON said " Realize that there are some doctors that are not comfortable with a given procedure, so they would say surgery is not an option".
    Also you will build a tolerance to medications so it does take a cocktail of meds sometimes. Not EVERYONE gains weight from nerve meds. It is a possible side effect but I know when I was on Lyrica or Neurontin I DID NOT gain weight at all. I thnk I seemed to be hungry more often but I would snack on fruits and vegis.
    Be careful when asking about your meds. If you ask for an increase or a change to a stronger med too often it will put up a red flag and quite possibly your doc will only give you a non narctic like Ultram, which does work for a lot of ppl.
    For me Methadone worked a heck of a lot better for me than the Oxycotin plus it was a lot cheaper. A lot of docs wont increase the dosage of Oxycotin due to the high abuse rate. Meds are a very touchy subject so be careful or like I said it MAY send up a red flag! Good luck and I hope you find the proper cocktail of meds that will work. IF you have nerve pain you need a nerve pain med to aleviate it. Oxy never took away my nerve pain. My daily pain lvl is about 6-7 around a 10 in the morning and evening. so if I hit a lvl 5 on the pain scale I feel very fortunate!! Good luck and keep us posted. MJ
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