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In Desperate Need of Relief -- please help!

6uitar6irl66uitar6irl Posts: 10
edited 05/22/2014 - 6:13 PM in Chronic Pain
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Comments

  • fentayl is in a patch form. that means that you would have to take off the patches and put new ones on. They usually last i believe 3 days. i know i was on them for about 3 months, 100 mics. i went on to oxycontin instead which was better. this is not like taking pills where you take 3-4 at a time instead of 1-2. patches are different. know wonder your doctor took you off. one usually has to sign a pain contract to take strong narcotics. i assume you did and if you did not then this is more of a red flag. there are a lot of holes in your story. if you are that desperate, then why does your pain dr not prescribe narcotics? usually gp's don't prescribe narcotics strong ones like oxy or fenatyl. this story is very strange to me. i have been on pain meds for 10 years under pain doctors, two because my first one retired. i do exactly what he tells me to do and i see him every 2 months for a checkup and refills. i have also gone off pain meds on my own and not because i made a doctor mad. and the withdrawl was not pleasant but i worked and all i had was diareah and some sleep issues. it was not horrible. it lasted three days. just my 2 cents.
    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Hi Jon, thanks for the response...let me clear some things up: I had been on fentanyl for 3.5 years. Started off low (25 mcg) and every 3 days. Most recently I was on the 100mcg every other day. I never applied more than one patch at a time.

    I was initially diagnosed by a spine specialist who suggested my GP prescribe fentanyl. there is some rule that the GPs have to be the ones who continue to prescribe, with correspondence from the other doctors. Maybe this is different depending on the insurance/state? But yes, my GP was the one who prescribed and continued to prescribe every month.

    Maybe my w/d was worse than yours because you were only on it for 3 months and I was on it for 3 years? I'm not sure. The last place I wanted to go was the ER, but I really felt I had no other choice.

    PM doctor won't prescribe because he is convinced I will "continue to self-medicate". He says it as if I've been 'self medicating' for years. Which makes me so incredibly sad...aside from that one time, I have had perfect standing with everything pain-related(going to every class/specialist ever offered, never having an issue with running out early).

    I would understand if my pain wasn't so paralyzing and if this was my second or third time this has happened... but messing up one time over a period of 5 years and totally learning from the mistake to never EVER let that happen again and willing to work with my doctors, I believe, should be an acceptable reason to have relief I need so desperately.
    I am not asking to be pain free, just relief.

    I'm on Ambien and that won't even help me sleep due to the pain :(

    Any other holes you want me to plug?
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  • LizLiz Posts: 8,835
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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Jon - you are on so much pain medication you shouldn't be feeling anything and at least you haven't had to give up work like so many people here. Most doctors won't give you narcotics easily, in Australia it is incredibly complicated, and because you have a good pain doctor, don't assume everyone has the same experience as you. It's not helpful to anyone to doubt stories or be so self righteous. Let those who judge be judged themselves.

    To 6uitar6irl

    I take someone with me to the specialist, like my mum, sister or a friend so they can explain how much pain I am in, because I just end up in tears too. My sister was really good because she explained my pain logically.

    PT makes mine worse - if you broke your arm and kept twisting it all the time it wouldn't get better - maybe they would like their arm broken and you could twist it and say the pain is in their head. Look really I would never wish this pain on anyone even my worst enemy.

    Make them look at your MRI's when you are there. They can see and not get you mixed up with anyone else. Also for me strong narcotics weren't working very well until I started taking muscle relaxants with them. This took the drs 6 years to work out. Maybe give this a try.

    Please take someone else with you when you go because when I asked my sister after she came with me she said I didn't explain logically in an ordered sequence so I sounded like I had holes in my story too, which really surprised me, I was in so much pain that day .What they don't realise is that you have to take medication just to be able to get in the car and go and see them in the first place.

    Also try and stop twisting your spine so much, you can't help doing it every day. A pain diary also helps as you can tell what is causing you pain - even if it doesn't come in for a couple of hours.



    I'm sure they would recommend PT for a broken arm that's not in plaster, just fling it around more, it'll get better. NOT.
  • I agree that taking someone with you is a good idea. I've taken my mom a few times and even though she was a good advocate, those were the times I got cut off. My mom wants me to get all new doctors because of that experience.

    At appointments,I get SO nervous that every word I say, although it's true, is being scrutinized and "red flagged". I have been on drugs in that past that have helped tremendously, but nooooo don't bring those up because then you are probably selling them on the street?!?!? I do NOT understand that logic doctors have. All day, every day I lay in bed in agony....and research the heck out of my conditions, their treatments, personal experiences on forums like this.... I know my stuff. I know it more than most of my doctors, and that's also a "red flag". Ugh.

    Good PT analogy, that's exactly how I feel. But because I am not complying with PT right now (I seriously can't even get in my car to drive there...) I am also a "drug seeker". I promised if I get slight relief, I'll go to PT, although I already know it does more harm than good for me.

    And muscle relaxants and narcotics has always been a combo I've wanted to try. I was on muscle relaxants only, years ago.

    Thanks for the tips! My appt is Wednesday. If my GP denies me again, I think I have no choice but to find another doctor....I'm thinking a woman dr. I've been with this GP for a long time. Last appt. he said he wants to continue seeing me (dont know if that's true), but if I feel I'd like to switch doctors I can. So would that also slap the 'dr shopping' label in my records? Just switching once?

    Thanks for the tips, tsp. Can I bring your sister with me to my appt?

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  • that is what i like, i try to voice constructive criticism and i am self rightous and also stoned from the pain meds. there are too many people on this site that will support someone no matter what.
    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • First off, I'm sorry that you are dealing with so much medically, but Jon is right......you didn't accidentally blow through a month's worth of patches without knowing what you were doing. A huge part of pain management is compliance- even when you are in pain, you have to follow the directions of the doctor who is prescribing your pain medications in any form.
    Almost every doctor who writes pain medications is taking a risk, and can not, in good conscience continue to provide pain medications to someone who is non compliant, even one time.
    No matter how many medical conditions you may have, does not mean that you need to be on super high doses, no matter what. Somewhere along the line, you need to learn to function in some level of pain and not being willing to return to physical therapy is not going to reflect well with your treating physicians. Again, non- compliance- I am only willing to return to PT if you give me pain medications is going to send up red flags. Laying in bed is not helping you , in fact, it is hurting you even more due to the inactivity. The longer you continue to do that, you loose muscle tone , your pain levels rise due to the inactivity and then when you try to do basic things, it causes the pain levels to rise accordingly.
    A consult with an addictionologist might be a goo idea- if your story is as you claim, then the addictionologist can write a letter to your doctor and can make recommendations and set up guidelines for compliance and with regular UA testing and pill counts or whatever compliance standards maybe start you on a trial of medications again, however I would strongly suggest that you stay away from fentanyl . There are plenty of other medications that can be used and are just as effective, especially since you have been off medications for some months now, you would be considered opiate naive again.....so you may be started out with some of the lower strength meds and get great results.
  • dilaurodilauro ConnecticutPosts: 11,348
    No question that on-going pain can throw us off in many different ways. Being young and dealing with pain can be viewed in two ways. One, while you are young, you probably didn't expect to have these problems. Second, while you are young you can generally rebound and respond to all the treatments so much better than older folks.

    Chronic Pain. As you stated you have been dealing with it fori 3-5 years (the best I can gather from your post). There are so many that have been dealing with chronic pain for 25+ years. Jon is one of those, who has lived in chronic pain every day for so many years. He still runs into obstacles, but has found so many ways to deal with it all. Chronic pain has been my body attachment for a little over 30 years. Narcotics, I've been on some from for over 8 years now without any breaks.

    Without any more details, its hard for any of us to really know what your MRI has shown and why your doctors feel it is so bad. My one question is that such your situation is severe, why has no surgery been one of your options? I didnt see any disc terminations or impingement, so that might be one of the reasons for no surgery.

    You've been trough many conservative treatments, and as of know, they don't seem to be helping you. That is not all that unusual. For many of us, we may need multiple sessions of these treatments Fir sine conditions, it is necessary to not only have multiple sessions, but combining several of them as appropriate.

    Dealing with various doctors, various specialists over the past 30 years, I have learned so much. One thing for sure,
    doctors want to see what is best for their patients. Good doctors can also identify from diagnostic tests and clinical examinations, what medications their patient requires. Doctors do NOT hold back medications from patients that need them. Yes, doctors, ER folks, pharmacists and other trained medical professionals can spot those individuals who are
    labeled as 'drug seekers' In reality, it really is not that difficult to spot. All it takes is looking into one's eyes. The eyes never lie.

    You have been to so many different doctors. I am not sure the reason behind this. Normally, after your PCP, a orthopedic surgeon or neurosurgeon, the next steps would be a pain management doctor and/or a physicist. There is so much to be said about continuity. When you go from one doctor to another, there is a big task of you describing your problems to that doctor and for them to see what is really going on with you. Staying with one doctor, its easier for them to see any changes in your condition. This way if you need more medications, they would provide that and on the other side, if they see that you dont need any more, they will restrain.from prescribing any.

    I know things might not look at that bright to you right now. Read more here, listen to those who have been there a long time. So many have been in your shoes and can understand. Many of us have walked the walk and talked the talk.
    Listen to what is being said.

    Your situation is no different than hundreds of others. Work within the system, you will find that you will get what you need.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • thoracic spine painthoracic spine pain Posts: 566
    edited 04/29/2013 - 11:36 AM
    Sorry - I know that constant pain can put anyone in a vile mood, including me.

    All of you seem to be lucky enough to have had insurance which I didn't have, and although the accident was not my fault I was in so much pain, thought I would gradually get better, my accident was fairly horrific, that I didn't pursue the legal option, so this has been very expensive for me, and have nothing to gain financially, it's just constant outgoing bills. I had to keep working , had a great job, and trying to cover which I shouldn't have done in retrospect and eventually had to give up work, gardening which I loved like you Ron and dancing which I also loved. Can never ride a motorbike again and find it hard to drive around myself.

    If I stay in bed it makes it worse so I force myself to get up and get dressed most days, even though some days it kills me and have to go back to bed. Luckily I can walk if I don't carry anything, there is nothing wrong with my legs. But the kind of PT they gave me didn't take into account my injuries so it made me much worse. What happened to do no harm?

    I would like to have an old fashioned doctor who wasn't too scared to touch me and feel where the pain is, instead of relying on scans, blood tests etc which sometimes are less than perfect.

    Jon I wasn't accusing you of being stoned, if you take that many meds you must need them, but it's kinda what you were accusing the other person of, wanting to be stoned. These drugs are horrible to take, certainly don't make you stoned if you are in pain, just ease it a bit.

    I just don't get why Drs are afraid to give you enough medication to ease the pain a bit, even if it's addictive - it's better than being a suicide statistic, I've never been pain free but have just had enough to partially control the pain. I stayed with the same doctor because he is free for me, and I couldn't afford the fees but he has seen me for years.

    I don't mind supporting anyone on this site, I'm not the pain police or the police about anyone's condition - the eyes never lie Ron, it's true, anyone who has been in pain can tell by your eyes.

    And if my sister lived in the States I'm sure she would be happy to come with you. She's got a couple of Masters degrees so she could put them to good use.

  • for people's information
    over the years i have on my own idea have decreased, decreased, once again, decreased my dosage. the doctor did not do this it was my own idea. one gets pain meds, not to be stoned but to function daily like i do, i teach high school, special education kids everyday. my meds are taken like the doctor wants. like people realize, i am used to them and do not feel them. it is like taking aspirin. i don't take them to get high, just to be able to deal with work and life. taking pills is different that using a patch. taking patches off and on is a different method that taking pills. they last for 3 days and the strength does not go up, it stays the same. taking pills is different because one can take more and more to get more of the high feeling. another thing that bothers me is people saying that their pain dr's are mean and don't understand me and want me to suffer. that is not the case because i think that the majority are nice and supportive. they get mean and nasty because some patients don't use the meds the way they were prescribed to them. they take more and more. they say they do this because they get no pain relief but i believe some do because they don't get the high feeling that they have in the past. narcotics if taken over a time will not affect the body the way it used to. one's body gets used to them and the high feeling goes away. just my 2 cents
    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
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