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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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13

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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    Spinal stenosis since 1995
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  • 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?

  • 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: 10,065
    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.
  • Jon,

    I understand what you are saying, and having been on pain meds for quite a long time I agree that the effectiveness diminishes. None of us here knows anyone else's situation except for our own. I would hate to be a pain management doctor today, just because of the scrutiny they face dispensing these medicines!

    The best things we can do for ourselves in so many ways is just take our medicines the WAY THEY"RE PRESCRIBED.

    6uitar6irl.........no matter what it is, I truly hope you get needed relief and that goes for everyone else here!

    Jon, by the way--THANKS for all you do teaching children with special needs. I have a boy with autism, so that means a lot to me! ;-)

    Charlie
  • dilaurodilauro ConnecticutPosts: 10,065
    edited 04/29/2013 - 8:03 AM
    We take medications to get by every day. We never take medications to make us forget about our pain or make the pain go away.

    There is a major difference between the two.

    At some point, in one's chronic pain situation, you will also so the difference and know what we are talking about.
    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
  • thank guys
    and buy the way i teach RSP kids but i have a few autistic kids in my class and they are my favorite students. i never have an issue or problem with them. one more year and i retire. the pain is really getting to me. i don't have the energy like i used to but i manage to get up and work and not stay home. the best thing for pain is to keep busy.
    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.
  • MetalneckMetalneck The Island of Misfit toysPosts: 1,617
    the "side effects" of narcotic meds do diminish over time. You dont want to be on the wrong side of an auto accident or fatality (or probable cause traffic stop) with ANY narcotic med in your system. Many would question the ability to perform many various work functions while "under the influance". This is why SO many workplaces have a ZERO DRUG tolerace policy. Jon, I respect you for fighting the tough fight .... but please be careful.
    Spine-Health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!  (Click on Welcome to Spine-Health)
    My Story  - Click below
    http://www.spine-health.com/forum/discussion/44804/pain/neck-pain-cervical/long-and-winding-road
    I am not a doctor nor have I ever played one on TV.  Therefore any comments made are based on my experience.
  • thoracic spine painthoracic spine pain Posts: 566
    edited 04/29/2013 - 12:20 PM
    Doctors are just people too who have studied a lot. There are good one's and bad ones as in any other profession. Remember you pay them, they don't pay you so it is up to you. I also have a few doctors and specialists who are friends and know me but they live interstate. As they know me they know I would never pretend to be in pain. Maybe some people pretend to be in pain but I would say it's a really low percentage and you'd have to do heaps of pretending over the years, pain impacts on your life in so many ways it would be hard to pretend for that long.

    Sometimes male doctors seem to think because you are a woman some of it is in your head. I watched a Dr Oz program, my sister called me and asked me to watch, it wasn't much but it did make the point that male doctors view women differently to men. Men are supposedly tough so don't make up conditions. I don't believe all doctors are gods, in fact I know they are not, they have the same problems as everyone else, have accidents the same as everyone else, get injuries the same as everyone else and have trouble with their kids, the same as everyone else. I worked with a lot of powerful people and thought they must be special because they had so much power. When I got to know them well they had more problems than me. You are as good as anyone else and deserve to be treated with respect.

    If you don't get any help maybe change doctors to a female. One day my normal doctor was away and I had to see a woman and she was great.

    Also if you can find a dr who has had back pain it would be good. I thought people were shirking, hypochondriacs before I got this, had no idea how much pain they were in. You can't see back pain, that's the problem. I also know my dr pretty well. Just ask them if you have ever asked for meds before this happened.

    I hope you find a good doctor who understands. What works for some people doesn't work for others. We are all individuals and PT and tens machines might work for some people but it just aggravated my injuries. There is big money in the pain industry these days. You are the one who best knows your body, and you deserve to be respected, just like everyone else.

  • here is what i think about the age issue and pain meds
    some pain meds are for chronic pain -pain that stays. doctors don't like to give them to younger people because they don't want them to be on the meds for 30-40 years. there is a bias about the age factor and pain. older people like me are getting towards the end of our time and taking these meds are looked as as helpful because as one gets older the pain and side effects get worse. i won't be on them for 30 years unless i live to be 90. drs don't want young people to take them for the rest of their lives. they hope over the years, the pain will get better and a younger person will finally learn to cope with pain. so why give a person a life sentence with narcotics is the mantra with pain doctors. they don't want to do that. younger people have years and years to work with pain factors. i think that short time pain meds is more of an acceptable thing.
    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.
  • MetalneckMetalneck The Island of Misfit toysPosts: 1,617
    Have either of you passed a kidney stone in your 20's?? Believe me you need strong pain medication .... no massages or aquatherapy will help a dang bit. Surgeries at any age require anesthesia ..... Age should NOT be the determining factor .... pain and control is the goal at any age.
    Spine-Health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!  (Click on Welcome to Spine-Health)
    My Story  - Click below
    http://www.spine-health.com/forum/discussion/44804/pain/neck-pain-cervical/long-and-winding-road
    I am not a doctor nor have I ever played one on TV.  Therefore any comments made are based on my experience.
  • MetalneckMetalneck The Island of Misfit toysPosts: 1,617
    edited 04/30/2013 - 1:37 PM
    English Translation, version 1

    Apollo Physician and Asclepius and Hygieia and Panacea and all the gods and goddesses, making them my witnesses, that I will fulfill according to my ability and judgment this oath and this covenant:

    To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art - if they desire to learn it - without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken an oath according to the medical law, but to no one else.
    I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.
    I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.
    I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.
    Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves.
    What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself holding such things shameful to be spoken about.
    If I fulfill this path and do not violate it, may it be granted to me to enjoy life and art, being honored with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.
    Spine-Health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!  (Click on Welcome to Spine-Health)
    My Story  - Click below
    http://www.spine-health.com/forum/discussion/44804/pain/neck-pain-cervical/long-and-winding-road
    I am not a doctor nor have I ever played one on TV.  Therefore any comments made are based on my experience.
  • 6uitar6irl66uitar6irl Posts: 10
    edited 04/30/2013 - 4:48 PM
    I can barely lay here to type this right now but just wanted to thank everyone for their input.

    Ron -- I have had surgeries in the past. And I am not a candidate for any SI fusion surgery because my Ehlers Danlos is so bad (very flexible joints)

    Metalneck, I agree with you. I really don't think age should be factor. I have been told by my Rheum that my hips are more comparable to a 75-80 year old's hips, not a 27 year old's. But I have to suffer? I just want enough relief to sleep and be able to get to work more. I would rather live until 40 in moderate pain than live until 90 in severe pain wanting to die every single day. I am absolutely horrified about my future.

    tsp, thank you for your understanding too. my appt. is tomorrow. I'm praying to god I get relief.
  • by the way i have a history of kidney stones, 5 of them the last count. this pain does not even touch my back pain. i also have had gall stones and surgery. kidney stone pain is the worse kind of pain and i started having them in college and the last attack i had was 4 years ago. they were due to prostate infections which messed up the PH of my urine which made stones.
    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.
  • Pain is non-discriminatory, it can happen at any age, and I totally agree that a younger person shouldn't be made to suffer just because of their age. Some people may even say that an older person, who is no longer working shouldn't need to be on strong meds because they're not working and what do they need relief for if there just sitting home all day. And that is just as ridiculous as saying a younger person doesn't need relief. See what I mean, BOTH arguments are ridiculous.

    Also pain is VERY subjective, what one person feels a 9 could be a 4 for someone else. For example, I had a major gall bladder attack (gall stones were HUGE, there were 3 of them and together they were almost as big as my gall bladder) and had to have emergency surgery to have it removed, sure it hurt at first, but it was tolerable and i was back to work 36 hours later. Only needed pain meds for 2 days. But when my back flairs up, forget about it, I can't handle it. See my 9 is someone Else's 4 and my 4 is someone Else's 9. Pain CANNOT be compared and arguing over it is just ridiculous.

    Anyway, I just needed to add my two cents worth. Thanks for reading, and I hope EVERYONE can get some much needed relief, no matter how old you are. 8-)
  • 6uitar6irl66uitar6irl Posts: 10
    edited 05/01/2013 - 7:58 AM
    Thanks secondtimesacharm and paininohio. I completely agree with you regarding age and pain. I can not function, am at my wit's end, losing my job, have absolutely no life aside from pain/laying in bed, don't sleep, have no future, and want to die rather than be in this pain. Age should NOT matter.

    I also agree that pain is subjective. I've had completely separate health issues in the past. Multiple, very large ovarian cysts that ruptured and when I was 18 I actually had to get an ovary and fallopian tube removed (comparable to kidney stone pain). That was pretty bad pain which I got a lot of narcotics for, but this SI joint/hip/groin/back/leg pain is UNBEARABLE and I am unmedicated. Also routine things like wisdom teeth surgery...I got pain meds for that, but really felt I didn't need them at all.

    I may get prescribed something tomorrow -- visited with my GP today and he said he'll consult with my PM dr and psychiatrist...who both okayed me. GP okayed me too. I had new xrays done as well (for the billionth time...I'm probably glowing by now) but it also indicated something new...I have scoliosis in addition to everything else. So I'm in a 'why me' mindset right now, but hoping to god I can get some relief tomorrow. I'm really nervous they'll put me on something super ineffective for me like codeine or hydrocodone. my tolerance is just way too high for those. I've had success on many many narcotics, praying to god I get put back on one of those options.

    Again, thank you all for your responses...it's providing me with at least a little comfort.
  • Cath111CCath111 Posts: 3,702
    edited 05/01/2013 - 9:33 AM
    Earning trust from you doctor, any of them, is so very important. I've had the same surgeon for almost six years and he handles all my pain medications, muscle relaxants and Lidoderm patches. We've never had a problem, as he knows I have pain flares and good days, too.

    But an interesting story: In January, after my latest lumbar fusion on Dec. 18, I blew through my pain medications much faster than I realized. When the pharmacy faxed him a refill waaaaay too early, he called me. I was unaware as I was in so much pain I really didn't care, just trying to keep the pain down to function. Anyway, the way he put it to me is: "Cath, I see from your ordering your prescription so early that you're in much more pain than your current meds can handle. The APAP level is the biggest concern, and I'm worried that you're going to hurt your liver. So, I'm going to switch you to a stronger medication that you take less times a day with no APAP and we'll see how that goes." So that's what we did. It worked and at my next appointment with him, went back to my normal meds again since the major pain was over.

    The point being: establishing trusty with your doctor is key if you need continued pain meds, young or old.

    Cath
  • Cath111CCath111 Posts: 3,702
    edited 05/01/2013 - 10:09 AM
    Yes, Jon has any friends here who understand him, respect his openness and willingness to help, and know what he's been through and continues to go through. This is his hot button topic, like it is for Sandi. Nobody knows about meds like those that have been on them for years.

    I tend to agree with you sturg, if you read up on hydrocodone, it's for moderate to severe pain relief and I personally prefer it to oxycodone which is stronger. Maybe it's the APAP, but that in combination with diazepam is my perfect blend. I'm hoping, 6uitar6irl, that you're not looking for total relief, but just enough to take the edge off.

    Sandi is right also in that staying in bed is the worst thing you can do. Truly, the more you do the better you feel - to a point - and walking is the best. I know it's painful, but no pain, no gain, as they say. That commercial for arthritis medication says it all: "A body in motion tends to stay in motion, while a body at rest tends to stay at rest."
  • 6uitar6irl said:
    Thanks secondtimesacharm and paininohio. I completely agree with you regarding age and pain. I can not function, am at my wit's end, losing my job, have absolutely no life aside from pain/laying in bed, don't sleep, have no future, and want to die rather than be in this pain. Age should NOT matter.

    I also agree that pain is subjective. I've had completely separate health issues in the past. Multiple, very large ovarian cysts that ruptured and when I was 18 I actually had to get an ovary and fallopian tube removed (comparable to kidney stone pain). That was pretty bad pain which I got a lot of narcotics for, but this SI joint/hip/groin/back/leg pain is UNBEARABLE and I am unmedicated. Also routine things like wisdom teeth surgery...I got pain meds for that, but really felt I didn't need them at all.

    I may get prescribed something tomorrow -- visited with my GP today and he said he'll consult with my PM dr and psychiatrist...who both okayed me. GP okayed me too. I had new xrays done as well (for the billionth time...I'm probably glowing by now) but it also indicated something new...I have scoliosis in addition to everything else. So I'm in a 'why me' mindset right now, but hoping to god I can get some relief tomorrow. I'm really nervous they'll put me on something super ineffective for me like codeine or hydrocodone. my tolerance is just way too high for those. I've had success on many many narcotics, praying to god I get put back on one of those options.

    Again, thank you all for your responses...it's providing me with at least a little comfort.
    Part of the doctor's hesitation in giving opiods to younger patients is that there is a tendency to think that more is better, when it comes to dosages. It is the group of "chronic pain patients" who are constantly on the lookout for higher doses far sooner than most any other group of patients when it comes to pain medications, they are also the group who is most often asking about " stronger" or what's more potent questions on various forums. For some reason, it seems that those type of questions and claims of "tolerance" issues seem to stem primarily from the under 35 age group........and that sets off the alarm bells.........seems that none of the long acting meds "works", but amazingly, the IR versions in doses of 15, 30 mg , 6-8 times a day works just wonderfully......or they want to jump from hydrocodone to fentanyl because they were told or read somewhere that fentanyl is better/stronger/ the top tier of pain medications........and dose adjustments, is another huge problem- every month or couple of months, "tolerance" issues seem to crop up, far faster than any other group of patients, despite other age groups who are stable on their meds, even after being on them for years at the same dose......
    Guitargirl,
    Your last post is another one of those sending up red flags........you want the doctor to put you on a medication that you want, because you have already decided that hydrocodone or tylenol with codeine is not going to be potent enough. If you legitimately have not taken any opiates for pain in the past 5 months or more, then you are considered opiate niave again, which means that those lower spectrum meds should do wonders for your pain. Putting you on anything stronger would be stupid and dangerous on the part of your doctors. Stop indulging yourself in laying in bed, and get moving around. All you are doing by laying in bed is making it more difficult and ultimately harming yourself by the inactivity. No matter how much pain you are in, you need to be up and doing basic activity every single day, several times a day, otherwise, no matter how much or what type of medication given to you is not going to help in the long term because you are wasting away and not using the muscles due to the constant inactivity.
    There is far more to pain management than simply relying on medication to get through the day. Start helping yourself and look into what other modalities you can use to help yourself get moving again.
  • Thanks again for your responses.
    I did not ask my dr. specifically for anything...even though I know what has worked for me in the past and what hasn't. I know I won't be put back on what I was (fentanyl 100mcgs/dilaudid). I know that I am lucky, I have been reading so many heartbreaking stories on this forum about people in legitimate pain who are denied meds and I can relate, my heart truly goes out to them.

    I mentioned this earlier, but I am NOT expecting to be anywhere near pain-free. I've accepted I'll have pain probably the rest of my life, but the pain level I'm at right now is a living hell. I can't take care of myself...I can't do basic things like laundry, cooking, sometimes I even crawl to the bathroom. All I want is something to relieve me so I can minimally function, so I can work, sleep, and begin exercising again. I'm not asking to be able to take long walks or anything. I've accepted this.

    I've tried, what seems like, every conservative treatment possible. I feel so guilty when I have to report back and say they didn't relieve the pain at all or made it worse, because I do know that is a red flag...but it's also the truth. I feel so trapped :(

    My tolerance really did increase too, the meds simply became ineffective, I'd let my doctor know and we'd run more scans or tests, see that my condition worsened, and we'd increase my dosages. I am definitely not chasing a "high" as I haven't felt that in years. The pain relief is what I'm after, I am so very desperate for relief.
  • like i have posted numerous times, more than i can count, some people don't want constructive criticism, they come here for their idea of support, unabashed support. I am not a person who does that. if i think that someone needs a dose of reality, i will give it and as long as i go by the rules you can take it or leave it. what gets me is that people who don't appreciate this will insult and accuse me of not being caring. why one feels the need to insult is beyond me. i guess it is some form of denial. this site is not only for hugs and kisses, it is also for criticism. what gets me is the continual posting of my doctor or doctors are jerks or not understanding. if you have to go to 5 or more doctors who all give you the same diagnosis, maybe the problem is yours not the doctors. i hear this excuse too many times. he won't give me narcotics, he does not understand my pain, i am not a drug seeker but i up my dosage etc etc. is is amazing of how many times i hear this form people. i believe most doctors are kind and compasonat and want to help people. i would become mean if i heard the same thing from people over and over and most of it deals with narcotics. i had to go through a whole battery of tests and cat scans and x-rays and discographies in order to be prescribed narcotics. i see my doctor every 2 months and take my meds per the letter of my contract. i have had only 2 pain drs because the first one i had retired. i have also had urine tests. so i think i can criticize from my experience. so people who say i should be more nice and supportive have no idea what i am getting at. if i was not supportive i would not come here and try to help people from my experiences with pain and meds.
    jon
    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.
  • thoracic spine painthoracic spine pain Posts: 566
    edited 05/02/2013 - 8:53 PM
    I was going to stop posting on this thread because it is getting ridiculous. (sorry 'bout the spelling secondtimes a charm, I hate bad spelling too, and I love the way it was corrected by spelling it correctlly yourself, especially in regard to this thread it has a much deeper meaning - there's ways to correct which are helpful).

    Pain and how many meds you are taking or not, how long you have been here is NOT a competition.

    Metalneck I Luv u for reseaching the Hippocratic Oath.

    I promised myself I would not get bitter because of the pain, it's really hard some days and Jon I do feel for you because you are working in pain, having to cover the pain - you must have to do some lifting in your job, and I covered for many years.


    In my former life before pain, my profession was to help people who were losing thier jobs because of medical conditions. I think I am pretty good at working out who the scammers are, and there are scammers because of insurance.

    I never in my wildest dreams thought I would end up here myself.

    It takes guts to go on this site and expose your life to others. I looked at it for years before I posted.

    There is no advantage to 6uitar6irl to post bullsh##. Do you honestly think she can go to a Dr and get meds because people on this site agree or disagree with her.

    If you think people on this site are hard on their doctors have a look at some of the other sites. This site is tame as far as critisism is concerned. I came here because the people seemed intelligent and helpful, and I wanted to learn from their experiences - good and bad.

    I don't understand how people who have been in this much pain for years - it's not fun, can judge others so quickly. There is honestly nothing to be gained by not telling the truth on this site. Usually people who lie do it to get something and they sure aren't gunna get more medication from posting here - so what is the point of not being honest.

    If I critisise other people I should be able to take critisism myself. Anything else is called bullying.

  • 6irl, I can relate a bit with the meds and doctors. I'm not going to share my whole experience on here because I am not here to be judged or critized. I've been following this thread and want you to know that in my personal expeience of 15 years being on narcotics for pain that depending where you live also depends on the doctors allowing pain meds. I moved from California to North Idaho and because I knew how most doctors react to folks on pain meds I continued to fly back to California every two months until I decided to make my roots in the North West. When I did I could only get 1/3 of the medication I was on in California. I did not abuse or take more than prescribed and still they adjusted it. In my area there are very few Pain specialist. My GP prescribes them for me but I have to go to the specialist once a year to cover my GP's butt. It's very frustrating to even have a lesser quality of life because of the less pain meds. I've had to adjust what other choice do I have? I tried Fentynl patch early on in my pain meds and for me, I did not like the spacey feeling it gave me. Different things work for different people. I hope you get the meds you need to keep going. I want you to know that I believe you. I also think you have been gracious considering some of the replies you have gotton on here. I wanted you to know that too :)
    XXOO
  • RangerRRanger on da rangePosts: 805
    Like a few others posting on this thread I have hesitated to even get involved with this as I don't want to pass judgement on how bad one's pain is, what should and what should and not should be prescribed. My pain level of 4 may be someone's 8 or 9 and we all must understand that. This young lady came here for support and looking at her number of posts, she is a newbie as we all were at on time here. I have been on many different meds throughout my long journey spanning several years, I try not to use them as they have negative effects on other vital organs as many here know. Sometimes the prescribed meds did absolutely nothing for pain relief, so I think a lot of times we think we can do better by increasing the dosage, not that it is right, but we are all human and we try things that aren't always right hoping we will find the happy medium.
    So not to point a finger at anyone I just think we, myself included, need to have more compassion for others whether it be here at S-H or anywhere else.
    Just my 2 cents for whatever it's worth.
    Take care all,
    ranger
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