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why cant I find the corrct meds?

dmoonchildddmoonchild Posts: 383
edited 06/11/2012 - 8:32 AM in Pain Medications
Hello everyone. I want to ask how long it took people to find the right meds or combo of meds to give them significant relief. Ive tried Kadian oxycontin and now im on the fentanyl patch at quite a high dose at 75 mcg every 48 hrs with oxycodone 15 mg for breakthru pain ( 2 a day) Im finding that the breakthru med works better then the fentanyl. Is that normal? Im not looking to run a marathon but I would like to at least be somewhat active again. Right now, Im still in bed most of the day. I dont know what to do. My Dr usually asks me what do I want to do. I dont know what to tell him. Im really surprised the patch isnt working. I was better off on the oxycontin but I hated the roller coaster of pain from that. I hope everyone is feeling good these days!


  • I don't have any med that works for me. Sometimes, depending on what is wrong, that's just the way it goes.

    What is the source of your pain? Do you have it all the time or are that things that improve the situation, like changing position, standing, sitting, whatever....?

    Why has surgery been denied? Sorry for all the questions -- just trying to understand your situation better.
  • dilaurodilauro ConnecticutPosts: 9,868
    pain unless you want to be a zombie.
    Its more a combination of different medications plus other activities that will help you manage your pain.

    Please read The Blend

    There is no quick fix when it comes to spinal pain.
    Its alot of hard work to get to the point where you can manage your pain
    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
  • Am I normal? I certainly do not want to be a zombie and my Dr pointed out that its very important for me to feel some pain so I dont further injure myself. I totally agree. Im just so tired of laying in bed all day. I really just want to be able to help out a bit with the kids like picking them up from school, making dinner, light housework. Right now my dear husband is doing everything. Im also afrad of my new PM Dr giving up on me like the last one. Im all for tial and errer, I guess I just want to know if this is normal. Thanks everyone.
  • Long time no "see" I'm glad to hear from you again :H

    It is so hard to find the right medication that will work for you- one that won't give you a bunch of nasty or unbearable side effects. I changed from Fentanyl 100's over to MS Contin a while back, and I still have a lot of pain. I also take 4-5 morphine IR a day for BT pain.

    I totally understand how you feel about being in bed all the time because it hurts too much to do much else. It's tiring, boring, frustrating, and I feel guilty too. On the bright side, I will be having surgery very soon to implant a morphine pump and I am excited/nervous. I know I can't expect the world, but I would be very content not to be stuck at home all the time. There is so much I want to do but I realize it will take some time to get there.

    Anyway, the best thing you can do is to mix it up like Ron said, and rely on a combo of meds to control your pain. Try using ice, heat, whatever else is there to help out. By the time I finished with Fentanyl, it was no longer helping and I knew it was time to try something else. I am all for rotating meds when necessary when a certain one is no longer effective.

    I hope your doctor finds a way to get you feeling better. Take care
  • I'm so sorry you're having such a hard time with your meds! I'm sending positive thoughts and prayers your way, I hope it helps! >:D<

    I don't really have much to add, except that I HATE it when doctors ask US to tell THEM what to do. I obviously don't know, or I wouldn't be there! The only doctor I went to that I answered that question was very brusque after that visit, and we never did get a good rhythm going again, and my care suffered. Although I'm sure there are doctors out there that actually listen to what a patient wants to do about a situation, I'm scared to death to tell them.

    Again, my thoughts and prayers are with you that you will find that "magic pill" so-to-speak.

  • Dmoon,
    I think that finding the "right" pain medication has a lot to do with what our expectations are about pain medications and what they can or will do. You have said in many of your postings that you wanted to be pain free, and I suggested to you back then, when you were switching from one med to another, that you were not going to be pain free and that we, as pain patients have to adjust our expectations a bit.
    I am going to be forth right with you a bit here. Lying in bed is not helping you. In fact, I am willing to bet that it is contributing to your pain levels. You aren't using the muscles that you used previously, and inactivity leads to muscle wasting, which means that when you try to do things, it becomes that much harder to do things because of the lack of muscle use.
    Some physical therapy might help you to get those muscles used to working a little again.
    You have to start walking and moving around again, even if it hurts. The only way to get your body accustomed to doing things again is to start doing them, within reason of course. You can't start carrying around your children, but you can start sitting while watching them play.
    The other thing that you have to do is start learning to deal with a certain level of pain. Most PM doctors use a level of 4 or 5 to be an acceptable level of pain. That usually means that some anti- inflammatory meds like motrin or aleve would ease the pain levels down a bit. You have to teach your mind and your body to learn to live with maybe a 4 level of pain as one that you can function a bit around your home with.
    You have to learn to do things differently. The fact is that your body is never going to be where it was before you were hit with the problems you have now, so you need to adjust the way that you are doing things. If your husband was not there and you still had your children but no one to help you, you would have to find a way to do small things that you needed to do around your house. Start by having your husband help you move things around in your cabinets to make it easier for you to reach things. That way, you can reach the crock pot or the pans you need to make a light dinner. Put a stool there so that you can sit if you need to for a few minutes while you make lunch or dinner. Use easier recipes than you usually do.
    We all have to make adjustments in our usual routines after dealing with the pain issues we deal with and while we all would love to not have to make these changes, our lives aren't going to stop while we wait to be pain free.
    The final thing to consider is that if the pain medications aren't helping, then why take them? Why not look into surgery? I can't recall at the moment whether or not you said your doctor wouldn't recommend surgery, but if I were you and the pain meds were not working as you say they aren't, then it might be time to consider having surgery to see if that helps. It may very well relieve at least some of the pain, which may help overall. No one wants to face back or neck surgery, but given your level of inactivity, it might be time to start considering it before you loose more than you already have.
    I don't mean this post to sound harsh or rude DMoon, but I am truly concerned after all of the meds you have tried, that you are still laying in bed, doing not much of anything to help yourself function a bit more than you are.
  • I cant have surgery because there is so much damage all thru my spine from cervical to lumbar. Ive been to 3 different surgeons and they said no way. Also I nerver said I wanted to be pain free. Ive known since this all began that I would never be pain free and I would LOVE to at a 4-5 pain level thru the day. Im at 8-9 all day now. Im guessing the whole med thing changes too once ya find the right mix.
  • its been 4 years and i'm still looking for the right combo to work for me. there are some things out there that work for me but my doctor will not prescribe them because they are strong narcotics and she is more worried about me becomming addicted than managing my pain. i'm not looking for a mircle just some relief! instead i got a bottle of pills that gets me really high and does nothing for my pain. grrr would rather have pain relife then be high!
  • its been 4 years and i'm still looking for the right combo to work for me. there are some things out there that work for me but my doctor will not prescribe them because they are strong narcotics and she is more worried about me becomming addicted than managing my pain. i'm not looking for a mircle just some relief! instead i got a bottle of pills that gets me really high and does nothing for my pain. grrr would rather have pain relife then be high!
  • Has anyone suggested trying an SCS or morphine pump since your doctors won't operate on you? It does seem to be the next option naturally.
  • I did ask about SCS and my new PM dr seems to think it wont help for my kind of pain and where it is but I am going to ask about a pain pump on my next appointment.
  • Dmoon,
    If you can't have surgery, then you have two options, one is to get yourself to the largest teaching hospital you can reasonably get to and see a surgeon who specializes in difficult cases. Yours may very well be one but I do know that at larger hospitals, specialists tend to take on more difficult cases than surgeons in rural areas do. Mine was done at one of the largest teaching hospitals in NYC, so I know that those type of doctors are out there. I am not saying that you haven't sought help but I do think that you need to see both a PM doctor that has experience with more difficult cases than what it appears that you have seen, and the same with the surgeon. I know that surgeons don't like dealing with thoracic problems, but herniations at L3 through L5 and stenosis are pretty common problems, and while multi level fusions are not common , they are done.
    The cervical problem I don't understand why they will not touch it?
    Your quality of life is non existant at this point, so you need to do something to improve it. Living with constant pain at a level of 8-9 is not good. Your PM should be working extensively to get it down, to where you can manage to do things around your house.
    What I said before about not lying in bed is still true. Lying in bed is not helping you at all, in fact, is probably contributing to why your pain levels continue to be at 8 and 9. The longer the muscles continue to be used minimally or not at all, the worse it will get. I am not telling you to go picking up your children and go hiking, but you need to keep moving. Walking around your home, sitting for a little longer each day. Excercising your leg and back muscles as much as you can , each day will go a long way in helping to keep them at least functional. Twirling your ankles , flexing your foot up and down, stretching your legs while sitting, all will help a little.
    Having your husband move/re arrange things in your home to make it a little easier for you to reach things will also help. Putting a stool in the kitchen where you can slide it along the floor as you sit making a meal can make it easier for you to reach things, and rest if you have to.
    I honestly don't mean to offend you, or hurt your feelings, but you did say that you wanted to be pain free. Go back and re read your old posts.
    I have herniated discs, I know that they hurt, I also have severe stenosis, and I know that that is painful when walking or standing as well. I am not telling you anything that I would not tell anyone else who was in a similar situation. I am saying this to you because I am truly concerned that the level of inactivity is making things much worse for you at this point. Believe it or not, I am trying to help.
    Is the pain more mechanical or more nerve pain, electrical, burning , stabbing, shocking? If it is more mechanical, happens when you are moving, then your PM is right in that a scs is probably not the answer for you, however if there is a component of your pain that is electrical, trying you on a trial of some of the nerve pain meds might be worthwhile before considering something permanent like scs.
    As far as the pain pump goes, if the pain meds aren't working that well for you now, there are a select number of the opiate pain meds that can be used in the pumps, so you first would need to find a opiate pain medication that works better to relieve the pain before going that route.
    Out of all the meds that you have tried, is there one that has worked better than the rest in relieving the pain? If there is, it might be worthwhile to think about going back to that particular medication and working to adjust the dosage to see if you get better relief than you are now.

  • What works for one of you may not work another one. Drugs effect people differently and to expect a med to fix it all is simply ridiculous. I get a lot of relief from what I take and to be honest with you, I probably would not survive without it but it doesn't rid all of the pain. It gets me to where I can function normally and that's all I ask for. Thank God we were able to get this far. It took a few months of experimenting with different meds but we made it.
  • I would definitely be a wreck without my meds. They without a doubt they help me more than the injections. I find that the oxycodone medications make me feel "high," so I stay away from them. I take both Opana's (ER and IR) and really like the fact that I don't feel like I take a narcotic medication. I think minimizing the side effects and getting to a 2-5 pain level is ideal.
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