Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test


I'm scared that I've become addicted to the different opiates my doctors put me on. I had a pain pump installed but after current complications it's not working, or at least it feels like it's not working. I feel a lot that problems just keep coming up one after another, and that others may believe that I'm making things up. I had the surgery to put the pain pump in to get off the narcotics, however now I feel worse than I did before the surgery. I consistently feel like I'm letting people down but not participating in life the way that I used to. My life is pretty similar to a lot of others that post on this forum, past back surgery, metal rods on both sides of the spine to for scoliosis. I didn't see if other members had a doctor that could pinpoint the problem for their pain. No one's been able to look at anything and figure out why I'm having this much pain, which has the effect on me of having doubt my self and also having others doubt what I'm going through. I just want to feel better and I don't know how
2000- spinal fusion, complete spine due to scoliosis
2012- pain began, started treatment for chronic pain
2013- install of pain pump, procedures to address complications
2014-blood patch, spinal fluid leak


  • There is a big difference between dependence and addiction. Dependence is when, after extended use, your body needs the medicine. If you stop suddenly you may have withdrawal symptoms. Hence they must be weaned off slowly. This is a normal part of taking many types of medicine such as antidepressants, anticonvulsants and many others.

    Addiction is a psychiatric illness where a person craves the drug, chases the high by taking more and more, displays manipulative behaviour to obtain the drug. They also have little self-control when it comes to the drug to which they are addicted.

    Being dependent isn't anything you should feel too worried about. Have you spoken to your doctors about your concern that you are not getting adequate pain relief with the pump? There can be issues with these devices occasionally. If they cannot fix it or make an adjustment that brings you relief I'm sure you would have the option to have it removed and go back to oral medication.

    I'm so sorry that you are suffering like this right now. It is awful not to have an explanation for your pain. And to be in so much pain and then have others doubt you or be doubting yourself is really unfair. You did not choose to develop this problem, it was just bad luck. I have faced stigma, scrutiny and doubt from others, too. Sometimes when you most need someone to be empathetic and understanding, they are not. There is a lot of ignorance and stigma about back problems in our society. It can leave one feeling very isolated.

    I really do hope you find a solution to your pain relief situation and feel better about yourself. Remember that you are doing the best you can do. What more can anyone ask?
  • Lmr106LLmr106 Posts: 119
    edited 03/07/2014 - 6:58 PM
    True, I suppose I'm dependent and not addicted it is just scary because you hear about addiction happening so much, and I've had to be on opates for about 18 months. The pain has consistently got worse, so and I developed a tolerance that results in higher doses. I feel like I have been driven crazy from the pain, and when it does get really bad, I take two pills at time, or pills not exactly the full six hours apart. However, I always stay under the amount I am prescribed per day, for now. I can see why doctors want to be careful with these meds, it really gets in your mind and body. I will see my doctor on Monday, and I've got a list of things to talk with him about. He doesn't know about the pump for the pain, how it feel it's not helping. because most times he and other doctors were trying to stop the CSF leak as a result of the original pain pump surgery. But since it was helping sometimes.....I don't know. Things can be so differmt from day to day, even hour to hour
    2000- spinal fusion, complete spine due to scoliosis
    2012- pain began, started treatment for chronic pain
    2013- install of pain pump, procedures to address complications
    2014-blood patch, spinal fluid leak
  • LizLiz Posts: 7,832

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • When did you have the pain pump implanted and how many dosage adjustments have you had since it's implantation?
    Usually, once the pump is implanted , a slow titration of dosage of the medication needs to be done and it can take several months to a year before you and your doctor find that magic dose amount.
    The reason that they implant the pump is to decrease the overall daily intake of opiates, and some other medications and deliver them directly to the spinal fluid, which is more effective.
    Has anyone taken any xrays to look at the placement of the catheter to make sure that it is still where it is supposed to be?
    Those are all things that you might want to discuss with your doctor when you see him.
    As far as the oral medications go, you do need to take them exactly as directed, taking them more often or more of them sooner than the expected time frame only results in creating tolerance issues, and that is going to further complicate the dosage issues with the pump.
  • Hi there, I've been there, done that too. I had two surgeries 1 year apart. The first was an L4 - L5 - S1. The first didn't heal right requiring a second (L2 - S1). Both have hardware, and the second one fused right. Now I have hip and leg pain after a year and there is a chance the L1-L2 disc is pinching a nerve.

    I'm not on narcotics right now, but took them for 18 months as well. I built up a tolerance, and I had my doctor rotate meds so I would get relief still. An example is I would be on Oxycontin + Percocet for around 3 months, then change to morphine + Percocet. I found that if I kept the percocet, but changed the long acting meds, I would do better, and have less pain. I just wanted to tell you what helped for me. Now I am taking Aleve and hoping the pain does not get worse.

    Take care, and I hope you feel better, Eric-
  • This topic seems to get posted atleast 10 times a month. An addict is a drug seeker. A person dependant on drugs has built up a tolerance. People are always posting I don't want to get addicited right after they are post op.

    I do take daily pain med's. I might need them for the rest of my life. I just don't know. I do not have an addicitve personality and have never been addicited to anything, but shopping. I do know drug seekers.

    My biggest concern is not getting mugged or robbed coming out of the pharmacy. The street vale on some meds are high.
    40 year old mom
    Tlif July 18
  • I am so glad that I read this post. I have been on opiates for ove 3 years and thought I was addicted. After reading this post and several other articles, I learned that addicted really refers to behaviors that I would call abuse. I have built a tolerance and would experience heavy withdrawal but I never take more than prescribe nor do I take to get high or mix with street drugs or alcohol. I feel much better about myself understanding that difference.
  • Lmr106LLmr106 Posts: 119
    edited 03/09/2014 - 6:47 AM

    Even with the narcotics the pain sometimes just drives me out of my mind. I had the pain pump put in in November 2013 and had three additional surgeries and procedures to fix the spinal fluid leak. I have been getting my dose and the pain pump slowly increased, and it felt like it had already reached the point where it was assisting with the pain. Now even though I'm on the same dose and I have ability to give myself a booster dose the pain has gotten worse and it seems like it's for no reason. Not only is the pain getting worse it's moving to different areas. I feel scared that people aren't going to believe me because this whole thing to me does not make sense! I don't understand how the team would be almost gone and it come back in different areas after being on bed rest since the beginning of December, give or take a couple times when they thought that The spinal fluid leak had healed. I do have a really good support system but I'm scared that they're going to back out if this keeps happening. The scary issue is there's just not a lot that I can do, nor do I have any stories to tell or anything to talk about with friends. What doesn't help as I keep hearing about what an unusual case I have because the leak continued for so long after so many attempts at fixing it. my original back pain started when I had fusion done on both sides of my spine and effort to correct S-curve scoliosis, 14 years ago. For the most part I've done very well up until these past couple years.
    For those of you that posted about going off narcotics how were you able to do that? How are you able to handle the pain without the narcotics there for you? I am not taking them to get high, I am taking them to make the pain go away and it is not even bringing it down to tolerable level anymore
    2000- spinal fusion, complete spine due to scoliosis
    2012- pain began, started treatment for chronic pain
    2013- install of pain pump, procedures to address complications
    2014-blood patch, spinal fluid leak
  • the pump if you were getting relief but are not now. Being on bed rest probably has a lot to do with the increased pain levels spreading.....that tends to occur from disuse, for whatever reason. The muscles get angry because you are now taxing them with working when they haven't for so long.
    It may be that the catheter has dislodged or has developed a granuloma on it's tip , which is preventing the proper amount of meds to be dispersed....
    Start with your pump doctor and let him order xrays to check placement and possibly a dye test to make sure that there is nothing prohibiting the pumps medication delivery.
  • with her pump, almost from the beginning. She kept getting the increases, but it wasn't helping and her pain was actually getting worse. She ended up on more oral pain meds AFTER the pump. They took her back in and got the catheter places right and then 3 days later she comes down with meningitis from the surgery. They had no choice but to remove the pump. I would definitely talk with your pump doctor about this.
  • Lmr106LLmr106 Posts: 119
    edited 03/10/2014 - 9:08 PM
    I saw my doctor yesterday, and told him about everything that's been going on. I had to write it down to make sure I remember things but I still got confused while doing it. He doesn't know why the pain is getting worse or in my leg. I told him that the pain in my leg is the worst of anything I've ever felt any has to be figured out. After doing exam and everything was normal which I told him no it cannot be normal because this pain came out of nowhere. He adjusted some of my medication including the medication in my pain pump itself. He actually loweredthe dose that I was getting in my back thinking side effects could be from that medication or possible depression medication. He wanted to lower the dose again of the depression, but he's not even the doctor that prescribes it so I'm confused. A couple weeks ago I was very difficult time having, thoughts of harming myself and very high anxiety and panic attacks, so I called a doctor that does prescribe the depression medication and she wanted me to go in for an assessment at the emergency room. I didn't go because I knew it would not be admitted, due to not having a plan in the methods to carry out the plan. Before I had to quit my job, being a social worker and I dealt with this in clients all the time. I just can't believe this is how my liffe is turned out. He also added another medication,gabapentin ,which might help my leg. I have been on this before and it helps, so that gives me a little hope. He wanted to take me off diazepam I
    talked about how it helps me calm down and not be tense. After hearing this he decided to put me on Xanax. I have appointment with I new psychiatrist next month and I really don't want to go. I don't want to have to start over by telling my story again, and then just hear her say well you're on too many narcotics that's the problem, then I just reply of course that's the problem that's why had the surgery to begin with so I could get off the narcotics! I wish there was one doctor that would take over everything so I didn't have to go through telling my story over and over and over. I have other health issues besides the chronic back pain and it's just exhausting
    Through my medical history with somebody. The really tough part is I don't know who to listen to and what to do. I trust my pain doctor, so maybe if he's willing he could prescribe everything. When he talks me about coming down on antidepressants I'm already on he said that he would write me a script for half but I was just so overwhelmed I didn't know what to do. I'm so scared of the depressive thoughts thoughts of harming myself coming back that I don't want to mess with it, but something is not right I don't know if it's the narcotics or the antidepressants but something has clouded by thinking I can't put things together like a used to. I go and try to talk and say the words in my head but they won't come out of my mouth. I have an appointment again in two weeks to see the pain pump doctor and my husband will be able to go with me for that.... I think that that will help the confusion. It's scary seeing someone who is a specialist and I surprised by your symptoms, especially with the leg issues. He stated that he believed me but there's a possibility all the chemicals working in my body are working right. I have doubted myself in the past but absolutely know that this pain is real whether it's from the combined chemicals or if there's any problem, it is there. He also wants to start tapering me off some of the narcotics which I'm scared to do as well, it seems like there's just so much happening at one time I Idon't know what to do. He told me today that I would be able to get back to my life again but I don't know if I believe him. With all the complications from the original surgeries I just I don't know if this is the way it will be forever.. He had never had a patient with a pain pump installed that had continued leaking by the fluid around the catheter. I ended up having three blood patches and months of bed rest, and when I thought it was gone I would go back to work and it would start again. This happened twice before I had to resign from my job. There is no leakage now, however the leg pain is really bothering me. At my best I can be up and not laying down for about three hours before I absolutely have to lay down, and there is no leakage at that time. This is what happens happened the other times though before I went back to work, and activity increased which prompted leakage. I'm worried that that problem isn't necessarily taken care of, and if I do or get the point where I can go back to work it could start again at any time. I have had so many x-rays I've lost count, and one after each surgery and once when I see New doctors. Both doctors I've seen has stated the catheter is placed fine.
    One of the nurses today asked me if I thought of having the pain pump take it out and of course I said I had thought about it..... But if I do that I don't have more options for pain control this is it. And my will have wasted four months of my life, so much money and medical bills and miss time at work I just I don't know...
    I really wish someone had a magic wand and could make this go away,
    2000- spinal fusion, complete spine due to scoliosis
    2012- pain began, started treatment for chronic pain
    2013- install of pain pump, procedures to address complications
    2014-blood patch, spinal fluid leak
  • dilaurodilauro ConnecticutPosts: 9,832
    needs to be discussed with your doctor or team of doctors. No one hear is medically qualified to give you valid responses.

    Anyone responding to your question can be giving only their personal opinion based on their own experiences.

    My immediate response to your post, however deals with your number of statements about people not believing you or giving up on you, and you feeling about being more than just dependent on pain medications. What is it that you feel people do not believe you?

    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
  • Ummm she's in pain and having a hard time dealing with it. She feels guilty that she can't work cause people keep giving her the run around that it's all in her head when it's not. False hope is a killer bad pain when your in pain. Lmr I'm in you same boat minus the pain pump but my doctor won't give me more than a small dose of oral per ocet per day cause he says I'm not there yet. But i think anybody is in need of major pain remedies when the pain is causing deep depression and thoughts of harming one self i mean that to me is where the line gets drawn cause you can't really get any worse then that. Once you hit that bottom it's like bloody give me what i need for pain relief and shut up about the risks cause i don't care about the risks anymore. I feel your pain Lmr your not a lone in this I'm still here only cause i have a 2 year old. If you want to talk pm me. I too need to talk to people in the same boat and not be questioned about validity of our pain. Doctors don't listen and as soon as you tell them you feel like you want to hurt yourself bam! There goes your pain relief.
  • dilaurodilauro ConnecticutPosts: 9,832
    edited 03/11/2014 - 6:30 AM
    very simple. Age should never be an issue

    When you have time, I have put together many threads about Chronic Pain and Being Young. I just commented on several today.

    The one statement that is 100% clear, While talking to a medical doctor and you let them know you have been thinking about hurting yourself, they will try to dismiss you and send you to a psychiatrist that deals with chronic pain issues.
    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
  • What I would suggest is a couple of things, the first being you having a pharmacist check all of the medications you are currently taking , along with any over the counter or herbal supplements and check for interactions or cross worsening side effects.......
    Then the idea of visiting another psychiatrist may not be what you want to do, but it might be a great idea in the bigger picture, having a fresh set of ears, to listen, and to evaluate and treat your depression might not be such a bad idea......he can also assist with the anxiety treatment.......adding a pain coach or psychologist to help you develop coping skills might also be something to consider.....
    The suicidal ideation is a big concern, but you know that already....but I think that once you talk to your pharmacist and make sure that there are no interactions or cross interactions with all of the meds you are taking, that it would be beneficial to look at the anti depressants and maybe change the dosage or change the med altogether and see if that helps some.
    In the meantime, working with your pm doctor to make changes to your medications and ensuring that the cathether is in fact fine, is all a step forward.
    Don't worry about who on the outside believes you or not, what matters is that your pm doctor does and that you start taking steps forward to get yourself to a more stable place.
  • Tired of the painTTired of the pain Posts: 197
    edited 03/11/2014 - 4:58 PM
    I was going to suggest some of the same things. Every time you see a commercial for Antianxiety meds or antidepressants you hear the same thing. Can increase thoughts of suicide. I am also on antidepressants and Antianxiety meds and I can tell you that this pain thing has me going through some bad stuff. It is normal to feel depressed when you life revolves around pain. So what do they do, increase the meds. You may want to absolutely talk with your pain doc and the new psych about changing your antidepressant it may make a major difference.I have actually been thinking the same thing but it really scares me because I have been on this for about 10 years. So what do we do? Keep trying, stay out of bed, try to do things we enjoy in spite of the pain it will cause? Who knows. Just don't stop talking. That is a form of isolation which is no good for any of us.
  • Lmr106LLmr106 Posts: 119
    edited 03/11/2014 - 7:02 PM
    I have a fear of people not believing me because until I found this pain management doctor, other doctors would not believe me. I would have x-rays done and would say there's nothing wrong , and they also stated I couldn't have further tests like a CT scan or MRI because of the metal in the fusion. This pains management doctor found a way for me to have all those tests done , plus ones that I've never even heard of, The search for a doctor went on for about nine months and so I found this pain management doctor who actually believes me, but of course my fear is going to be here there because it has happened so often, people dismissing me saying I'm fine it's all in my head, those sorts of things. Doctors wouldn't believe it because they couldn't see it.
    The pain has caused the decline in my depression, And hascertainly increased anxiety and panic attacks. Tired of the pain, I get what you were saying as well. Before this was I was originally on an antidepressant for 10 years and then they added an another antidepressant when my thoughts got worse. Maybe I'm not on the right medication, but when I've had it changed before when I was a teenager I ended up and inpatient unit due to severe suicidal thoughts. I obviously don't want that to happen again or the thoughts get so bad that I actually carry through on the suicide, so thinking of changing to a possible better medicine is very scary. I told my husband Iall this, including the thoughts of suicide and the fear of changing meds, he was very supportive. He stated that he would be here for me if that happened and if an inpatient stay it was needed that that's what we would do.
    Sandi I think you do have a good point about a fresh pair of eyes but I'm still scared. Due to my past interactions with doctors including the ones described above, i have a very hard time trusting them. I don't want to hear another doctor say oh my gosh you've been through so much! Or what we need to do is get you off of all these narcotics, which is been the response of other specialist I've seen besides making management doctor to get second opinion. Also money is a factor for us. I was able to get on my husbands insurance when I lost my job but we lost the income from my work and the co-pays are higher has insurance co pays. If I work with my pain management doctor on my depression medication I don't have to spend another $50 to see a psychiatrist. since he is already stated that he would write me scripts for antidepressants I can't help but think that's the way to go. Because of all the complications from the surgery he seen me so often and knows me so well it seems to me like he can make a better assessment then somebody that I would just meet with for half an hour.
    The isolation is one of the worst parts, i'm very glad that I found this website. There people in similar situations that finally understand what I'm talking about!
    2000- spinal fusion, complete spine due to scoliosis
    2012- pain began, started treatment for chronic pain
    2013- install of pain pump, procedures to address complications
    2014-blood patch, spinal fluid leak
  • thoracic spine painthoracic spine pain Posts: 566
    edited 03/12/2014 - 2:07 AM
    I was misdiagnosed for 8 years all because only the obvious showed up in MRI's.

    They made my feel like it was in my head as well, I started to think I was going crazy but I wasn't. The pain was real and just because it didn't show up in the tests didn't mean it was in my head. So you are not crazy and I know how exhausting it is to try everything and not be properly believed. Finally they realised why I was in so much pain and now I have meds that control it but for a long time it was really difficult.

    My case isn't textbook so after $30,000 of my own money a physiotherapist finally worked it out. It's also extremely rare and the treatment isn't textbook either so I am so lucky to have found someone who worked looked outside the textbooks, felt my spine and worked it out. In hindsight it makes total sense but it didn't show up on the MRI or Xrays maybe as they were just looking at the totally crushed vertebrae - it's 80% crushed so looks bad on the MRI but it was the one above slipping out and giving me pain.

    As Sandi suggested you should ask your pharmacist to check your medications. You can also check your medication interactions on drugs.com. Put in all the meds you are on and they will bring up most side effects of interactions of taking different medications together. If you are suffering any of the symptoms you need to tell your Dr. There is also another site run by a Dr called SSRI stories so if you are on SSRI's they can effect some people very badly and suicidal thoughts can be one of the side effects.

    Before you all jump down my throat I also know they have saved a lot of people. Just happens I am totally allergic to them, which is in my GP's notes, the pharmacist is really great and he missed it too. I went nearly blind, no way I could get out of bed after a couple of days which is really frightening. I stopped them and got better.

    I found Kalma to be good for anxiety - it's the same medication family as Valium, but for me, valium makes me sick while Kalma didn't - don't know why. The brand name is something different in the States. I didn't have any trouble coming off it either but it is supposed to be very addictive. We all have different reactions to different medications.

    Take the post you have written here to your appt. It helped me, not having to explain everything again, but it also validates your pain - a lot of people end up here 'cause they are at breaking point and really need help.

    Spine Health is also a great site that many Dr's and even spine specialists don't know about, in Australia at least. I would love every spine specialist to have a look at patients posts so they see the other side.

  • I went to web md and entered in all my medications. There were some low risk notifications such as increased side effects. I asked my pharmacist every time I get a new medication to check it against all the others I'm taking, and I have always been told that it's fine. Except than the pharmacist will go on about how they are concerned about how many narcotics I am on. I am being tapered off one of the depression medications at this time, and so far it's going okay. Like I said in another post the pain doctor is wanting to taper me off the narcotics so I think that that will start soon as well, I will talk to him about it at my appointment on Monday.
    I had a massage on Monday and it really helps the pain in my leg. The massage therapist,who is part of my pain doctor's office stated that she thought it was a pinched nerve. When she touched certain spot on my leg it just automatically sent burst/ of feeling back into it. On the positive side it's helped me decrease the amount of pain medicine I'm taking, and I have been able to do more. I am concerned that when I talked to the pain doctor and describe the symptoms, and even said I think I have a pinched nerve he wasn't really sure. For example he did examination and told me tthat everything was normal. When I showed him the different spots for the pain was he said that there are no nerves around that area. I remember I responded to that by saying ' as screwed up and complicated as my back has been you're telling me there couldn't be a nerve in an unexpected area? he said that he could do a CT but the test would not reveal anything. I don't know if that's because you can't see nerves on a CT or what? I guess I really shouldn't worry about it because he did not dismiss my concern,he stated that he knew that I was in pain he just was not sure what was causing it. But then I become concerned because I specifically pointed out that I thought it was a pinched nerve, and he did dismiss that. What do other members think? I know that I am paranoid do to my interactions with other doctors, which have been mostly negative because I was not listened to and not believed .This doctor has worked with me for almost 18 months and this is the first concern that I've had. What experiences have others had with their doctors?
    Also when you are having a good day do you feel lazy if you are not doing anything? Since I've been having good days since I had a massage, I feel lazy. I realize it has only been two days but after four months of uncertainty I want to start my life again! I want to call my old work and see if they have a position open, because I feel like there's no reason that I should not be working if I feel like I am now. My parents taught me to work hard and to never let somebody else do something for you that you could do yourself. Also I feel lost without a job. I got my Masters to work, not to sit at home. What are other members experiences and feelings about this?
    2000- spinal fusion, complete spine due to scoliosis
    2012- pain began, started treatment for chronic pain
    2013- install of pain pump, procedures to address complications
    2014-blood patch, spinal fluid leak
Sign In or Register to comment.