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    Old 12-12-2007, 01:25 AM   #1
    zach88
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    19 year old with chronic back pain, advice greatly appreciated

    Hi all,

    I'm new to these boards, and I've just spent the past couple of hours reading through many threads in order to gain some insight. A little background on me:

    I'm currently a sophomore at USC, however I am on a leave of absence from school because of a discectomy I had done in September. The affected disc was L5-S1. I had tried many different treatments before the surgery, including physical therapy (in two different series), NSAIDs, steroids, and epidural shots. None of these provided me much relief, and my doctor, parents, and I decided to go ahead with the surgery. In addition to this, I frequently changed the narcotics I was on before the surgery in order to control the pain. I was on Soma the entire time before the surgery, and went from Tramadol to Darvocet to Vicodin to Percocet to Dilaudid. Unfortunately, I found that my tolerance for all of these pain medicines were extremely high, and Soma was the only drug that helped me absorb all of these medications.

    After surgery I thought I was in the clear, very optimistic and positive about everything, until about three weeks later when I plateaued, and found that I was getting no relief. It's been three months since my surgery, and one round of physical therapy and epidural shots later, I am still in the same amount of pain. It has been terrible physically and emotionally for me, especially because I am not in school this semester. I am trying to get back for the second semester in January, however, this seems unlikely as of right now.

    After my surgery I was on Soma and Norco 7.5/325 for almost two months, and while I found that it was somewhat helpful, the pain relief I received lasted for less than an hour. Strangely, I had tried taking OxyIR at the same time as an alternative, and found absolutely no relief.

    Three and a half weeks ago, my spinal surgeon finally sent me to a Pain Management doctor. He was very understanding when it came to my situation, but did not like that I was on Soma because it metabolizes into Miltown. I was willing to try anything he would prescribe for me, and he gave me 50mg of Lyrica three times a day, 4mg of Zanaflex three times a day, and 8mg of Dilaudid four times a day.

    I have found absolutely no relief from any of these medications. I am stunned that I found more relief, while minimal, from hydrocodone then I did from the dose of Dilaudid I was taking. I don't know why my body does not respond to these medications, but I need a change fast. I even started taking one and a half of my Dilaudids at one time, and still, no success.

    I saw my surgeon for a checkup yesterday, and he agreed that if the Soma worked for me, there was no reason I should not be on it. He too cannot understand why my body reacts to medicines so strangely, but he is sympathetic and wants me to find maximum relief from whatever I take. He determined that the scar tissue was aggravating my nerve pain, but he doubts that that is my primary problem now, because I had another epidural shot about a week ago with no relief. He told me that I either was just healing very slowly from surgery, or more likely had internal nerve damage, or worst case, permanent nerve damage.

    Bottom line: I am going to get new prescriptions from my pain management doctor on Monday, and I REALLY need to find a regiment that works for me. My next step is obviously long acting narcotics, but I don't know which ones will work best for me. I know that my body does not react to oxycodone well, however, I don't know if that would change in higher doses. I've read a lot about methadone, and I'm thinking that might be my best option. Do I raise my Lyrica dosage? Do I start taking valium as a muscle relaxant to help me sleep? If anyone has had any experience with a patient who is so intolerant to many, many narcotics, I would greatly appreciate any feedback or advice. Again, I'm only 19 and this whole ordeal, although not yet a year long, has taken a huge physical and emotional toll on me, and I am just looking for a way to control my pain right now.

    Thanks so much for reading my whole story, I know it's long, but I look forward to hearing back from anyone who can help.

     
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    Old 12-12-2007, 06:47 AM   #2
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    Hey Zach,

    sorry to hear about what you are going through, and I too hope you find a proper dosing regimen soon. I currently take 20mg OC x3 a day and 8mg dilaudid x2 a day for breakthrough pain. This combo works wonders for me but obviously does not work for us all. It sounds to me like you have a Wonderful PM DR and as you will read here that is tough to come by. MY best advice is to make sure you stick with him and tell him exactly how the meds make you feel. Methadone may be the answer to your pain, for me it was not, but for others it seems to be the "wonder drug". In my understanding your body build tolerance to methadone much slower than other meds, and the side affects can be greatly reduced compared to other opiates. This may allow you to study and also building a tolerance slower could benefit you since you are so young. I am no DR, these are just my opinions from what i have read so please discuss this with your PM DR. It is also no surprise that you get pain relief from hydrocodone but for a very short amount of time, I am the same way on Oxycodone so tis the reason i Switched to the ER version of this drug. There is also other forms of Extended release medications out there at this time, there is a fentynal pain patch, Different and varying forms of Morphine, and of course oxycontin which we have already mentioned. I hope you find peace and pain relief and wish you the best of luck. Dont let the pain consume you like it can most definately do from time to time. Be honest and upfront with PM DR, make sure you follow his contract to a tee, and if you choose, keep a journal of your pain and your meds to present to your DR. This can sometimes be very helpful in managing and treating pain in PT's with a hard to diagnose and treat issues much like yourself.


    God bless and good luck,

    videogamecrazed.

     
    Old 12-12-2007, 09:15 AM   #3
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    Zach,

    I am so sorry you are suffering like this. I understand the problem with medications. I get no relief from morphine, and I suffered horribly after surgeries because that is all they wanted to use. I list it as an allergy now, so that they will do something different. You are not weird. We are all different, and some "weaker" meds work better that the "stronger" meds simply because our bodies respond to meds differently.

    I agree that you need a long-acting medication and there are many choices. What did they give you in the hospital after surgery? If it was morphine or fentanyl, and it worked well and you tolerated it well, I would try one of those first. If this is indeed a nerve pain problem, I would ask about adding Cymbalta. It is not going to replace your pain meds by any means, but it has helped me tremendously with my nerve pain. It has also helped me from feeling so down and anxious all the time. Having chronic pain, especially when you are so young is very hard. Many people don't understand, and it's so frustrating not to be able to do the things we used to, or the things our friends are doing.

    I highly encourage you to continue with school any way you can. I had my pain when I was in college, and it was a struggle, but so worth it. It took me six years instead of four, but when you have these health problems, you will need to use your brain, instead of brawn, and that requires an education.

    There are many places that can help you. Call your local Vocational Rehabilitation center. They will help with $$ for school and books, as well as helping you find employment in school and out of school. It is a great resource, and they helped me all through college. Even if they just pay for your books, that's one less thing you need to worry about.

    Good luck and keep us posted! Welcome. Talking to people that understand really helps. We're here anytime.

    Your Friend,

    Amand

     
    Old 12-12-2007, 09:20 AM   #4
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    Hi Zach88,
    Welcome to the boards, I have found these threads quite helpful. Unfortunately I don`t have a lot of advice to offer you, because I am in much the same position as you, as far as the tolerance for pain medications.

    Currently I am on the duralgesic patch 75ml, percocet when needed(which is all the time but it does nothing). I haven`t had the type of surgery as you however. I was in a bad car accident in 2002 and had many injuries from that, to my neck and back. But also the accident they figure triggered Fibromyalgia, which other than pain meds there isn`t much treatment.

    I too seem to have this very high tolerance to all types of meds and even when I find one that works, I plateau very fast. I too am fairly young, 27 but have had this issue since I was 22.

    I am waiting to see a new pain doc on Jan. 11th, so I hope he has some answers. Also I am supposed to start Lyrica this weekend(which is how I found your post). Any feedback on Lyrica... If you have any advice on it as far as side effects and stuff I wouldn`t mind hearing it.

    I do know that the duralgesic patch has been helpful for me but, again I keep hitting a plateau and having to increase my dosage, but when will it stop...
    Also I have heard it is very difficult to come off of.

    Anyhow I know I haven`t been much help to you, but if I learn of anything else from this new doc. I will let you know. And if you have any advice for me about which med may have helped the most I would love to know about it.

    I hope someone on here has some info that can help you!

    Tasia

     
    Old 12-12-2007, 11:27 AM   #5
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    I can relate to being young and having the burdens of pain.Similiar story here got rearended by a dumptruck at 21 and by a drunk at 26. I'am grateful to survive the two accidents but i'm having a rough time as of late. had to have what was left of my l5-s1 removed and had 4 screws 2rods and a cage with fake bone placed in. now going on 5 months post-op. i remember being told several times pre-op that it would be 3 months to a total recovery. BULL$HIT i could barely walk for two months and wanted to die and all i could get was 5mg perc's which didnt do a thing. Improvement has been very slow for me , and at times i can't even get straight answers for the things happening. Like now i have low abdominal pain after surgery. I have been to several docs who have prescribed me different things. Like you i have a high tolerance to meds and once on them i build tolerence quickly. you are probably experiencing different types of pain (there are several) opiods work differently for these types of pain. ie: morphine may dull skeletal pain but have little affect on nerve pain where oxy's may do the trick for the nerve. problem is docs will prescribe break thru medicines but will rarely prescribe two around the clock opiates to cover all the different types of pain. play around with docs and medicines (carefully) withdrawal off these things is nasty. im currently weaning off morphine,percs and lyrica which helped but i felt like a zombie and still had pain. It sucks being young and not out enjoying life and just sitting around being miserable and in pain waiting for the next doctor to act like he knows what your going thru and making false promises. what i have done recently that started to help a small degree was yoga. get that degree because that will be the ticket to a non physical career and thats huge. i didnt get mine and my job is all physical so i have been out of work, no income because the drunk didnt have ins or licsense and left with many bills and just lost my mother on top of every thing else. i try to remind myself that there is people out there in way more pain than me, and that in time things will work out. you have to be a fighter for yourself and family and have the courage to take this stuggle head on and on the other side we will be stronger individuals for it.

     
    Old 12-12-2007, 01:52 PM   #6
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    Zach
    I would recommend that you increase the dose of Lyrica. From your post you said you are taking a total of 150mg/day. You can definitely increase it as long as you can tolerate any side effects. The optimal dose is 300mg/day and it can go higher all the way up to the dose that I take which is 600mg/day. I would also recommend trying the Cymbalta. This medication did not work for me but I know it has for many others. The thing to do is raise one medication at a time and don't introduce anything new. That way you can know which med is helping. I pray that things get better for you. You may also want to try the fentanyl patch if the other things that I mentioned don't help enough.

    Brian

     
    Old 12-12-2007, 03:50 PM   #7
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    Thanks so much to everyone for their replies. Unlike a lot of other forums I post on, mainly involving movies and such, everyone is so nice here and it's very refreshing. It's also nice to be able to have people who can closely relate to my situation.

    Tasia, as far as Lyrica goes - I honestly have a lot of troble differentiating between the Zanaflex, Dilaudid, and Lyrica. I think this may be because I'm just not on a high enough dose of it. However, I did a lot of research on Neurontin and Lyrica right after my surgery, and even recommended it to my surgeon. He agreed that it might help, but wanted me to wait until I saw my PM doctor. I was pleasantly surprised when the PM doctor brought it up before I even asked him about it. When I see him Monday I will definitely ask him to raise my dose of that, and then I can give more feedback as to how that affects me. I also have heard from a few doctors that, although it is an older medication, Neurontin may work better for some people. So, I guess ask your doctor what he would recommend and just play the trial and error game.

    I am definitely going to ask for Cymbalta; I think it's a great suggestion. I hear it has indications for chronic pain, and it will probably also bring up my mood some. As far as extended release medications go, what is everyone's experience? I know that there is OxyContin, Opana ER, and then the several different forms of Morphine (MS Contin, Kadian, Avinza). I am hesitant to try any of the Morphine based medications because the Dilaudid is so ineffective for me. Is this different for some people in an extended release preperation? And what is anyone's experience with Opana?

    And then, as I mentioned in my first post, there is methadone. I've done a lot of reading about it in the past week, and for a lot of people it does seem like a miracle drug. Is this a good medication in anyone's experience who seems to have such a high tolerance for narcotics? I also have some concerns that I won't be able to take some of my other medications with methadone. So any further feedback on that would be great. Aside from that, how strong is the Duragesic patch? I feel like my doctor may be a little hesitant to prescribe it to me, but he may not. I just don't want to come off like I'm seeking anything, I just want to be well informed and relatively knowledgeable going into the appointment. Finally, any other medications that are long acting that are not usually mentioned on these boards? I don't know what they would be, but again, if anyone has any ideas, that would be excellent.

    I'm sorry if my thoughts are all over the place here, I just want to get the best information I can by reading the feedback and experiences of other people in the same situation I am in. Thank you so much again for your do time helping me out, I really do appreciate it greatly.

     
    Old 12-13-2007, 01:58 AM   #8
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    Zach! we are definitely kindred.

    I had a 360 fusion a little more than 2 months ago. I know my surgery is very different but I have the exact same problem with pain medications. My body has always metabolized medications quickly. . like an all day medication will only last half the time.

    I've told my surgeon this fact and he basically told me (without telling me) that I am full of it. In the hospital I was on a dilaudid drip with did not manage my pain, then I was on percocet (oxycodone) at a mediumish dosage and now I am on vicodin 7.5/750 i think. I usually take two vicodin and two ultram (tramodol) and sometimes the pain is controlled for 30 min to an hour. I've put in 2 calls to my surgeon and am waiting to hear back. don't think he will help me since he either doesn't believe in pain or thinks his work is so good that his patients wont have pain. On top of it all I've recently developed major muscle spasms that are getting progressively worse and involving larger muscle groups. I'm most likely going to have to see a pain management doctor.

    Sorry I can't offer you some advice. However, I am interested in the name of your pain doc and where he or she is located? we live in the same area (west la) and my surgeon is at cedars. Your tolerance to pain medications is definitely worse than mine, I think. .either that or your doctor is more willing to give you medications (I'm jealous). Keep me updated if you find anything that helps you. I hope you feel better soon.

    -Kate

     
    Old 12-13-2007, 09:06 AM   #9
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    i can tell you my experience with morphine although i have some screwy chemistry(allergic to aspirin,ibprofrun,and steriods) so your experience may be different. when i was first scripted morphine i was exstatic and thought wow finally ill get relief. not so morphine in pill form is very different then morphine iv(like in the hospital). its bioavailability is awful which means only a small % of swallowed morphine makes it to where it needs to go. if your in serious pain you will need a very high dose to get some relief. other problem with morphine for me was a didnt want to do a damn thing will just sit around unmotivated. days literally fly by and i would get nothing done would also not get any feeling of well being as described actually felt more depressed than anything. i was a mess would actually procrastinate going to the mail box way sad. i would do some more research on methodone dude. that is a big step meth is a long acting drug with long half life. which translates to a very long withdrawal , people say its easier to come off of but ive seen people coming off that stuff and they all say they wish they were withdrawing off of a different opiate. they can wean you off slowly but meth is definately a very long term medicine people stay on for years. being 2 months post op you probably feel like your pain will never end but what if you start to get better and then you have a meth dependence. your choice but meth scares me, not ready for that type of commitment right now as im still holding out hope to make a recovery.

     
    Old 12-13-2007, 11:49 AM   #10
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    Question Re: 19 year old with chronic back pain, advice greatly appreciated

    Thanks so much guys, I love coming here in the morning and finding kind words from people who are in my kind of situation.

    KT, I'm really sorry about your fusion; that's such a heavy duty surgery and I feel for you. I cannot fathom that you are ONLY on vicodin and ULTRAM for the kind of pain you're in. Especially if you're like me in the way we metabolize medications, you need something long active, and in turn much more effective. I hope for you that you can work that out while you're still in so much pain. I didn't meant to be misleading, I DO go to USC, but I am on a leave of absence from school because of my whole situation, and I live in New York. So I'm sorry I can't make any productive recommendations for you. But, I am trying to get back to LA next month, although it is unlikely. Either way, I need to find a consistent pain management office out there that will continue me on whatever regiment I find works best for me here. So, I will definitely keep you updated on my findings, and thanks for your concern.

    Hah, I too am very hesitant about methadone. I've read a lot of good things, but I've also read a lot of negative feedback. I think in these situations it really just depends on the person because everyone reacts so differently. Yesterday I felt like meth would be a good thing, and today I'm more inclined to try something like Kadian or Oxycontin first. But I just have to wait to see what the doctor says.

    If I've been on 8mg of dilaudid 4x a day for about a month, and it hasn't been effective, what dose of oxycontin would be appropriate to start out on? When I was taking percs they were just 5/325, and I think i was taking eight a day, but after about a week they just stopped working altogether. What would a good dose be, and do I recommend that to my doctor? I'm just afraid that he's going to start me off on a dose that's too low, and I'm going to be stuck with that for another whole month.

     
    Old 12-13-2007, 03:43 PM   #11
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    did you try taking 15mg or more of percs at once and if so did you get relief? i usually have to take 20mg to dull 30mg to dull enough for sleep. this is by no means a suggestion just relaying my experience with percs. they tend to be fast acting for me and can get any where from 2-5 hours of relief maxing about an hour after and tapering off. the reason for all the perc talk is because if that was succesful for you on some level then maybe oxycontin is the route you want. they will always start you off small dosage unless you prove tolerance, if you mention dilidiud i would think they'll start you off at 80mg every 12 hours. i like the oxy because its what makes me as close to normal mood wise, you may differ. i tried dilidiud and didnt like it either i got headaches and upset stomach. i know how you feel as far as feeling weird about conversations with docs about meds. i just let the doc know what my goals are in your case you want to feel well enough to continue your studies and right now your unable to because of pain.

     
    Old 12-16-2007, 01:40 PM   #12
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    HEY!

    Oh my god, I'm so excited and scared to read your post. I too am 19 and had to take a medical leave this semester because of chronic back - or butt - pain. We are not sure if it is my spine or muscles pressing on my sciatic nerve because I have seen two orthopedists, one spine surgeon, my pediatrician, and two physical therapists, and every single one gives a different diagnosis and a referral. It has gotten better since I came home and was relieved of the anxiety of school and started cymbalta - so it sounds like your experience is way more intense than mine, although i have scrips for vicodin and lidoderm patches those are less intense than yours and i can now sit and walk which i couldn't before - but seriously, how are you emotionally handling this? I want to be out there doing **** and love life and at the same time I totally doubt my sanity. Have you heard of John Sarno? I don't have the guts to read his **** but i am wondering if i am making this **** up for some ****ed up psychological reason. I hope I am not co-opting your thread or should start my own or something. But we're so ****ing young! The other reason your post spoke to me is that the L5-S1 area is the SLIGHTLY messed up area of my back - hyperextended the vertebrae last year rowing, developed nerve root cysts that they say are NOT the cause of the pain, slightly bulging disc now - aaaauuughh, what the **** is going on in our bodies! I feel like there is a monster inside of me! Grabbing my butt! I don't want to **** you up, clearly you're seeking real medical advice. But do you all on this forum experience this profound doubt about the very real internal experience of pain?

     
    Old 12-22-2007, 02:01 AM   #13
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    I just thought I'd update anyone that cares about my situation. . and Zach, maybe it can be of help when you come back to los angeles.

    Saw a pain management doctor today in Santa Monica. He is a pure gift from God. He understands my fear of him calling my surgeon, says its no problem and he'll get my records without him knowing. He gave me a set of 6 lidocane shots into my back to help with the spasms. .it hurt like hell and I'm not sure if they helped. However, he has put me on Kadian which is a time released morphine sulfate. He was shocked no one has suggested a long term pain med instead of suffering through the peaks and valleys of short acting. Also, he's keeping me with vicodin for break through pain. I havn't taken the morphine yet, I wanted to wait until the evening in case I pass out or vomit.

    I don't remember if you've tried morphine zach, or if it will even help me. .but so far I REALLY suggest my doctor.

    I hope everyone is feeling okay. Merry Christmas etc.

    -KT

     
    Old 12-22-2007, 09:19 AM   #14
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    That's so great KT. I'm really glad you found such a great doctor. Very possible I will check into him when I'm back in LA. Are you allowed to give me a doctor's name on here? I'm just not sure how the rules work.

    I haven't tried morphine yet. I actually rally would've liked to try Kadian for this month, but as soon as I mentioned "long acting
    my doctor jumped right to Methadone. He thinks it's the best thing for me. Haven't found any relief yet, but it's only been five days or so. But really, I'm very glad something has worked out for you. It's always satisfying to have a good doctor's appointment. Happy holidays, and feel better, i hope the new medications work for you.

     
    Old 12-22-2007, 02:34 PM   #15
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    Re: 19 year old with chronic back pain, advice greatly appreciated

    zach
    hi, what dose of methadone did he put u on. from what i have heard it has to be slowly weaned up. i am on oxcodone 30mg i take 8 a day and they use to help me great but now they only help for about 1 hour, since i have had another problem come up where i am alot worst,when i went to my pm dr i thought and ask if i could be taking something more for the pain and she said more tomamax and cybalyata no relief yet.next appt. i am going to ask for a couple more pills,i am scared to be put on a different med since that work so good for me if they would just add a couple more a day i would be fine or put me on the fentch patch and use the oxc 30 for breakthrough but i don't know if they would do 2 meds. i was on lortab 10mg and went to oxc 30 mg 8x a day ,so that was a big jump in one day. i wouldn't mine trying methadone but the start you out on a low dose and i am on alot of other meds like xanaxs 2mg ,soma,klopkin 1mg, others i already listed and other non-related meds,so i don't think you can take methadone with xanaxs,so i will let yall know good luck,keep us posted,kelsey

     
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