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Very nervous about next doctor's appointment. Almost in tears.

boardnbboardn Posts: 17
edited 01/29/2015 - 7:41 AM in Chronic Pain
Hello, hope to get some encouraging words.
I am 45 years old and have always been in good shape. Perfect record....no history of drug abuse or crime. I was lucky to have 1 or 2 drinks a year.

I started having terrible pain in about 2006 or 2007. After many doctors, looking answers and alternative treatments, I almost gave up. They found MGUS which is a blood cell disorder that can cause neuropathy and pain. Mine seemed to be located in the mid back, feet and left arm. I had multiple tests, studies and workups.
I avoided taking meds because always being a health nut and hated the negative effects that could occur. About 3 years later I get recommended to a great cancer center, and oncologist since I have a blood issue that can turn to cancer. I am monitored twice a year for life. The oncologist referred me to their pain center as he noticed my suffering. Reluctant. ..i went. The pain I had could leave me curled in a ball on the floor crying. Just ask my wife. Suicide was often crossing my mind.

I feel like this is where I was set up for failure with lack of guidance or controls.
The doctor started me on a low dose of Nucynta which did little. Eventually we got to a high enough dose, I was able to deal with pain, both pain was less and I felt like it wasn't too bad. I told the doctor it was not perfect but good. He then bumped me to the recommendation max of 600 mg. Even better....felt better and almost no pain. This was great, back to my old self. I wanted 24 hour relief so he said take a few at night and prescribed 900 mg plus he allowed me to take more and early refills were fine. I got scared as I noticed I was taking more than recommended. He said it was fine as I am a big guy and the pain is not that strong. He said it should be like vicadin with phone refills. I said okay and kept taking them.

Then I was taking more as I noticed pain was breaking thru. I also was waking up feeling tired. So I had to start to take one right away to feel normal. I said enough already. I asked to try something else cause I didn't like where this was headed. Tried morphine but made me sick. Back to nucynta with vicadin. Vicadin seemed like otc tylenol....little help so I was taking max too.

I did not like where this was headed and wanted a doctor close to home so I moved to a new doctor. I called the old office and said I would be going to a doctor close to home.

With the new doctor I mentioned how I was on 900+ mg. I also was afraid to mention I felt dependency building for fear of rejection...not wanting that hellish pain back. He dropped me to 600 mg but that was it but always worried that would not help me wean down. He did urine tests so I thought, great, this will help me. I figured maybe this is how an appropriate pain management center keeps people in line. Great, except I still struggled.

Second or 3rd visit my urine was empty. When I saw him, first thing is said was that I am running out early. We talked and he added morphine for night pain. This worked but kept taking excess nucynta cause it seemed to work better and made me feel normal. The morphine did help some at night so I asked to switch to morphine and nucynta backup. I got terribly sick and was back in his office early again making more changes.

I was terrifies to mention dependence and tried to fix it by switching meds to something that didn't make me dependent. Not know much about this process, I kept reading more articles and getting scared.

Back with the old doc....i noticed a skin problem like eczema. I mentioned to the doc can it be related to nucynta or the dose. He insisted no
I started seeing dermatologists. Eventually one said any drug could cause a reaction even though not common. Whenever we stopped nucynta or weaned off....my skin got a little better. I figured this would help me stop this med....my dermatologist agreed and sent a note to my new pain physician. He was not convinced but I know I convinced myself as I was sick of dealing with this. Skin and nucynta. I forgot at the old center we tried long acting nucynta but it wore off early. So back early we switched to Horizant and vicadin for break thru which didn't work well. Horizant helped but now with no Nucynta the pain became bad, I was withdrawing and not sleeping. I was still finishing early.

I called twice complaining of suffering and was told they couldn't see me till following week. Well the day came and a huge snowstorm hits. I asked if anything could be done....go to ER...anything. vicadin seemed to do little. I was only on 3 a day which was nothing. I wanted to ask doctor if we could increase. In desperation I researched and as a result started taking a bit more making sure not to exceed the max daily, knowing I was taking morphine and nucynta at one time. When desperate, it is hard not too.

All along I was thinking we have to fix this and I was hoping the doctor would be compassionate and as if I was struggling and that I shouldn't be embarrassed. Talk about hard to talk abou! I wished he would break the ice.

My last call they said the doctor was not comfortable having a colleague see me so I would have to wait another week. I felt at rock bottom...in terrible pain and suffering, withdrawn from life again.

So I decided next appt, if they don't call and dismiss me, to be 100% honest about this problem and I can't do it myself. I was going to come with a lot written down so I don't feel corned, like I an addict or stigmatized or having to defend myself. I want to be honest and take that step. I am going to ask if he will keep me and work with me through this. I don't want to be alone in pain. I want them to do whatever, medications to help with dependency, do the urine testing again....not sure why it stopped. Whatever, pill checks, smaller scripts, ER meds. I need to have an honest relationship with my doctor or this can't work. I always hope doctor's when prescribing opiates would say I don't have to be embarrassed and honesty is so important, especially if I feel dependent.

So appointment is next week and I am so nervous.


  • horselady21hhorselady21 Posts: 187
    edited 01/29/2015 - 3:20 AM
    I understand your nervousness. But you need to get this problem/pain/meds under control.

    If I understand you correctly, the meds you have been prescribed are no longer working? Vicodin is a mild narcotic, and 3 a day isn't much at all. You said you are taking the max...the max of what you are prescribed?

    I don't think it is right for you to have to wait for the Dr. to decide to show up, and you certainly shouldn't have to wait for an appointment. That just ticks me off. They want you to wait a week or two, but you aren't allowed to take any more pills than you are prescribed! So what the hell are you supposed to do? I would call them and ask if you can go to the ER so you can get relief until your appointment. Problem there is, most ER's will only give you an injection or an IV, no prescription. Maybe your Dr. can call into the ER and allow them to give you something to take home until your appointment?

    One time, when my surgeon was fussing about writing my prescriptions, I wrote him and his PA a long letter, describing what my life was like (that I HAD to work, take care of elderly parents, etc.) and I couldn't do this being in so much pain. I actually got a phone call from the PA that they had read the letter and would continue to write my prescriptions and increase until I was more comfortable, but at a certain point I would have to go into pain management.

    Also, it would be a good idea for your wife to get involved, if she isn't already. You need someone to advocate for you, someone who can assure the Dr. that your pain is out of control and that you are both frustrated and scared. You need reassurances that your pain can be and will be controlled.

    Also, if you haven't (and you may be...I can't recall if you said you were in a pain management program), you need to get a competent, compassionate pain mgmt. Dr. They ARE out there! It may take a few tries to find the right one. Again, have your wife accompany you. When we are in pain, it is difficult to think straight and make sound decisions. All your brain can think of is how to fight the pain. It rules your every waking moment. It is a monkey on your back, whipping and yelling. I have been there. Most of us have, and we understand how you feel.

    Please post again, or PM me, whatever you need to do to get through this. There is, if not an end, at least a better and less painful tomorrow. With the right help.
  • boardnbboardn Posts: 17
    edited 01/29/2015 - 3:22 AM
    Hi, yes...this is actually a pain management program at a local hospital. The nurse over the phone told me they are uncomfortable with me wanting to change medications so often and wanting to try weaker meds and stop the nucynta. She said I had to wait and use whatever I had leftover from when I took nucynta, but that is now gone too. That is what I want to talk to them about as I said is that I need their help and honesty from myself and doctor so that I don't run out early. Not sure why they stopped urine tests, and the one time they asked me to bring in morphine to get a different script, I did and it was accurate. Anyway, they said they will not recommend an ER for pain relief and got upset. I am starting to think I felt more comfortable at the first pain and palaiative care center at Fox I don't know how doctor's feel about taking a patient back after you decide to leave. It was a longer drive but mostly hassle free and very responsive. Frustrated. If I decide to leave this current center, I want to see what happens after I am completely honest about this struggle.

    I think that they felt I wasn't being honest and running out early, yet the doctor never said anything. I wish he would say it is okay and to not be embarrassed if I am struggling. I have trouble opening up about my problems.

    I also told them I wanted to eventually get off opiates if we can find better means so again part of me not wanting to deal with anything that causes dependency. However, just give a way out if it fails, and not have me wait another 2 or 3 weeks. They seem to be fed up with me.

    In hindsight I would have asked....what are my options if 3 hydrocodone is not enough. I think he is afraid I was running out early so gave me less, almost to teach me a lesson. I am going to tell him I was desperate and could hardly function and that the Horizant is not doing enough on its own to get me thru. That is why I quickly started taking more hydrocodone in desperation. Even at every 4 hours, it did little.

    I also realize the doctor should not have taken back my morphine prescription, 3 weeks remained as it is illegal for them to do this.

    I don't want them to feel I am being malicious or deceptive...rather I am trying to fix a problem.
    Hopefully they are receptive.

    I hate the thought of finding another doctor or to go crawling back to my first doc...I am afraid it looks bad. I just want good pain management with help to keep me honest.
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  • boardnbboardn Posts: 17
    edited 01/29/2015 - 5:15 AM
    Also........this relationship has to be built on trust and mutual respect. If they see me struggling, they should speak up, rather than let things go. It isn't easy for patrients sometimes to be honest and firm. When I started with this doctor, I told him I didn't like that the previous doctor put me on such high doses. I mean, if I was coming to them to be deceptive or something, I would have said that was great or would have stayed where I was. I wanted better guidance and understanding.

    I may ask my primary care doctor for help. He is great, but I don't want to bounce around. It doesn't look good for anyone if you keep moving around, plus it is stressful.

    After my first appt with this doctor, I called them after a few weeks to ask for guidance because it was hard to go down to 600 from 900, almost impossible. I never got a call back. I told the doc that but he ignoredd it and didn't respond. So he added in the morpine which in the end made me sick. So here I was trying to get away from Nucynta because I wasn't getting the guidance or help and trying to find some that works and not make me sick. It got to a point that I got so disgusted that I flushed some of the Nucynta away in the toilet before switching. I was so sick of what they could do.
  • dilaurodilauro ConnecticutPosts: 13,423
    edited 01/29/2015 - 7:24 AM
    If you keep bouncing back and forth between your doctors you will only wind up hurting yourself in terms of any trust.

    It is so important, as you started out saying that having trust, respect and confidence is so critical. It always needs to be two way, between doctor and patient. Once that does not exist, problems may occur.

    Problem is many times once that trust is broken, its almost impossible to rebuild.

    I keep on hearing you talk about pain. No question that can become a major focus. But in order to manage pain, it can not consume you and from your posts it same like it has. There are so many other modules in pain management that does NOT include pain medications.

    Take a look at The Blend and you will see just how many different ways there are in helping to control pain. Thousands of patients have adapted something like this. No one I believe wants to be dependent on narcotics. This is just one avenue out.

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • Forgive me, but I'm so confused by your post. It's all over the place. Am I understanding correctly, you are taking more meds then prescribed? You can't do this, regardless if the medicine is working or not. You have to your medicine exactly as your dr. has told you to do-NEVER more. If the medicine is not working, then you have to talk to your dr about it and let them make the decision what to do-you cant it into your own hands and take more. That is self-medicating, taking more than prescribed is a big NO NO..You can and will get dismissed from pain management for this and end up with no meds at all.

    You say this relationship has to be built on trust and mutal respect, I agree. But your dr has to be able to trust you too, and it sounds like, from what I'm reading that maybe he/she does not. If you are struggling & having a hard time, why don't you speak up, instead of expecting your dr to-it's a way street, your dr. can not read your mind. They are not going to hold your hand. You say it's sometimes hard to be honest and firm-as a patient, you should have no reason not to be honest, I am always honest with my dr, that is how I get the best possible care he can give me. I am honest with all my dr's. I have nothing to be dishonest about. I'm sorry, but it almost sounds like you are being dishonest with yours. Are you? I do not mean to sound harsh, I do want to help you. But my woman's intuition is telling me that there is more here than you are saying.

    Neucynta, morphine, hydrocodone, vicoden, ect. ect...Is the same dr. prescribing all these to you? What exactly are you supposed to be taking right now and how many p/day?? You are running out early? You can't be doing that. As I said you cant be self-medicating. When you run out of what you are supposed to be taking are you just taking one of the other meds? I get the feeling here that you don't trust yourself with your meds and that you want the dr's to keep you on the straight and narrow with them. It don't work that way. They give you these meds in trust that you will do what you are told to do-you, YOURSELF, have to keep you own self on the straight and narrow.

    In" your" words, you say:
    " Second or 3rd visit my urine was empty. When I saw him, first thing is said was that I am running out early. We talked and he added morphine for night pain. This worked but kept taking excess nucynta cause it seemed to work better and made me feel normal. The morphine did help some at night so I asked to switch to morphine and nucynta backup. I got terribly sick and was back in his office early again making more changes."

    You said in your paragraph above that he (your dr.) added the morphin for night pain, you say it worked but you kept taking "excess" nucynta because it worked better and made you feel "normal" 1st problem I have with your comment is this: You are taking these meds together and your aren't supposed to. You were supposed to be taking just the morphine but you took the nucynta too because, in your words it worked better after you said the morphine was working. You can't take matters into your own hands and switch yourself back. You have GOT TO talk to your dr before any medication changes are made. 2nd, and the biggest problem I have with what you said in this paragraph is, you said, "the nucynta" made you feel normal....My question to you is, are you just taking these meds to make you feel "normal"? I do not mean to accuse you of anything but taking meds to just feel "normal" is a sign of addiction. You do seriously need to have an honest discussion with your dr before your end up going down a bad road.

    I'm sorry you are going through what you are. And again, I don't mean to accuse you of anything. And forgive me if I have misunderstood any of what you were trying to say, I just had a really hard time following your post. I wish I could help you more.
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  • Completely understand. Neither of us have been honest or open enough. It should be two way. I am writing a letter to him about this in addition to seeing him next week.

    I am always open to ideas or alternatives as I feel I have tried everything in the last 8 or 9 years. I can revisit. Specific suggestions?
    dilauro said:
    If you keep bouncing back and forth between your doctors you will only wind up hurting yourself in terms of any trust.

    It is so important, as you started out saying that having trust, respect and confidence is so critical. It always needs to be two way, between doctor and patient. Once that does not exist, problems may occur.

    Problem is many times once that trust is broken, its almost impossible to rebuild.

    I keep on hearing you talk about pain. No question that can become a major focus. But in order to manage pain, it can not consume you and from your posts it same like it has. There are so many other modules in pain management that does NOT include pain medications.

    Take a look at The Blend and you will see just how many different ways there are in helping to control pain. Thousands of patients have adapted something like this. No one I believe wants to be dependent on narcotics. This is just one avenue out.
  • boardnbboardn Posts: 17
    edited 01/29/2015 - 8:36 AM
    I understand the blend approach. I tried all listed and more! Nothing helped. Exercise, weight lifting, seems to help but that does little while at work or sleeping. My doctor's say it is a process, like an auto immune condition, that can't be shut off.
    Believe it or not, this all started soon after I had Ulnar entrapment surgery. However, which came first, the chicken or the egg. I had arm pain before surgery. Now I have the foot pain that can feel like my feet are burning off. My hands and arm, especially left arm can turn blue or become cold as ice. You name the specialist, therapist and I have seen them.
    Even typing is so pain ful in that arm. Working in computers, that sucks.
    I have even though if I had the arm amputated, I may be better off. :-(

    I also talk to my psychiatrist about this. I am writing a letter to my pain management doctor in addition to seeing him next week.

    On medication. My previous doctor had me taking 300 mg + over the max. I brought this up and he said it is common, the max is just a guideline. So, I would run out early, taking more than prescribed and doctor said that is fine, I can take a few more. I even told my pharmacist and to call my doctor if concenred. All the while, I got worried. Fast forward, I see the new doctor and tell him that I am taking 900 mg or more a day and he agreed the prevoious doctor should not have. He dropped me to 600 mg and that was it. Keep in mind, I know little about withdrawal or dependency, the first time I noticed it, it scared the hell out of me, thought I was just sick. So, next appointment I said I am running out early, still taking over 600 mg. He said maybe I just need a different medication to get through the night. Next round of taking the medication, the result was the same. By now, I am reading articles on dependency, opiates, some work, some don't depending on the person, some can cause dependency for some people, some not. I felt I was a terrible person who was now dependent on something that also helped me - all the while I still did not like some of the side effects. However, everything is a balance and I have to learn to accept that. I have to stop looking for perfect. However, pain, meds, side effects, all impact a productive life.

    Anyway, I started asking if we could find soemthing else that may work on pain but not cause other issues I did not like. That is where all the switching started happening....

    I figured in hindsight, he would have said that we needed to be careful in getting me down on the Nucynta dosage now that I was taking so much. Whatever guidance or protocol, I was ready. It seemed that never came up and I felt so embarrassed, I tried to make it go away.

    Trust, everything you all say, makes sense obviously.......and I feel horrible. Wish I was better at being upfront with new relationships, such as with doctors or if I had one that had better controls and consequences.

    I read a good article written by a doctor who said that it is so essential, that a doctor, especially in pain management, let patients know that nothing should be ambarrassing for a patient to say, no matter how hard, dependency, addiction, whatever, and that a doctor needs to be sure that message is clear. Secondly, some people are just not experience to know what they are getting into or have gotten into, so it can become scary and lonely for a patient feeling like they have a problem. Some people have an easier time opening up so it is so essential for a doctor to start things off right. I have abuse in my history and that has shaped a lot of my relationships in life, and one of the things I discuss with my psychiatrist.

    Try to understand how hard it is for some people. Some of us are wired a certain way and need more guidance, knowledge transfer and checks n balances.
    I will never forget how weird that one visit was where I told him I was still running out and the conversation never got serious and instead I was prescribed something else in addition.
    Maybe I wasn't clear enough but a lot of this was new to me.

    Sometimes the pain can be bad enough that I will moan, try to meditate or almost hyperventilate. :-(

    I have nothing to be dishonest about but for some people when you realize what is going on, you feel bad and as if you are a bad person and nobody wants to hear what I have to say anyway. Thanks to abuse, I was also taught to not have any confidence and my thoughts and words don't hold much weight. I still work on this and with my psychologist.

    My previous doc had mentioned that Nucynta was not that strong and shouldn't be a scheduled medication, which didn't help me - I had no comparison or experience at this point.

    The fist time we switched to adding morphine, I said it helped, but not perfect and doesn't help get Nucynta under 900mg. It was almost like nobody wanted to hear that and ignored me. I am not kidding.
  • Are you trying to achieve 100% pain free? That's what I'm getting from you. You can not expect to be 100% pain free. I've been living with a 5 on a scale of 10 for the past 7+ years. Some days are better than others. Pain Management is meant to make you comfortable not pain free. I would not be able to function if I took enough pain medication to be pain free.

  • what you are saying.

    First, you are a man, and one who has been abused. That combination makes for a very difficult communication problem, but it is great that you are working on it.

    I am glad to see that you are going to write a letter. One suggestion, maybe have your therapist/psychiatrist read it over for you, or help you write it. Could they also contact the Dr. for you, to maybe help with the communication thing?

    Morphine doesn't work for everyone (doesn't do a thing for me, just makes me sick). There are SO many other options out there! You need someone to find the right combo for you, in addition to other modalities. Opiates are not always addicting, if used properly and under the right guidance. And they are not always for life. They can be a stepping stone. I started on high doses of Oxycodone, gabapentin (for nerve pain, which is not an opioid), muscle relaxers, etc. Last year, I went on the Butrans patch, which was a GOd send, and now am only on Tramadol, a very light synthetic narcotic. It is always a path, not a destination.

    Let us know what happens. Keeping you in our thoughts!
  • I hate when people say pain management is a total approach and requires a lot. I tried everything and still do, but it is all the same....nothing helps. If I end up out of pain clinics, and don't want to take these any longer I will start making edible marijuana using strains good for pain based on how many people have been able to get off pain meds due to cannabis.

    I stayed home from work today to go to hospital to have some tests done to make sure my condition is not becoming cancer. Plus pain is bad enough that massage, meditation, herbs, nothing helps. I end up groaning or hyperventilating when it gets bad.

    Honestly, this really is no way to live. My psychologist really thinks cannabis would be safer and more effective. I get nervous about it though. Worried about giving it a go.

    My first doctor told me that my pain will never get better...will just get worse. He said if anything, will need more meds as life goes on.

    I can't even go to NY with my wife and daughter tomorrow cause of the pain. Stuck inside. Can't stand too long due to foot nerve pain. Sitting in a car too long is hell on earth.

    Making things worse, opiates kill the pain but destroys my desire to do anything and no sex life ever again. :-(

    If I didn't have a family I think I seriously would have just ended it. They keep me going although many people tell me to just suck it up. I hate them.

    I want to try to go workout but I am just laying in bed with my feet shaking and groaning, trying to breathe and get through another day.
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