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still no relief

AidensMommy361AAidensMommy361 Posts: 56
edited 06/11/2012 - 9:02 AM in Pain Medications
I have been taking Neurontin since January, my Dr just upped the dose on the 17th of this month from 300mg four times a day to 600mg four times a day, also added Celebrex 100mg twice a day. I'm still taking the orphenadrine 100mg prn qid. I start physical therapy tomorrow...anyways, I am still having lumbar and sacral pain. Mostly in the mornings and at night. I have noticed that since my meds were changed the nerve pain is less but my actual spine feels as if its been covered in concrete and simply does not want to move. I'm not sure how to explain it, my muscles don't hurt and I don't have the pain in my legs but my sacral area hurts horribly! I'm so stiff! Now I cannot see my Dr until the 22nd, I have been calling since Thursday and still have not heard back from them. I'm so frustrated about this whole thing...the only thing that seemed to help was when I was prescribed Norco 7.5/325 and took the norflex at the same time. I guess my question is how do I go about telling my Dr that the norco and norflex together helped the best?


  • Hi, oh how I feel your pain and frustration. I have been dealing with 2 mild disc buldges for about a year now. I like how they term it mild. It has truly ruined my life. I am now doing pt which I feel is doing nothing. My Dr put me on Nuerontin also. Its just makes me tired and dopey. I am truly at a loss as to what is my next step in this horrible situation. I have gone from a active busy woman to a near cripple. I found this sight just to talk to others who are suffering to. Is norco helping you? I have never taken that drug. Is it a narcotic? Oh my I hope my comment makes you feel a little better knowing you are not alone. Hang in there.
  • It really is depressing. I just turned 22 and have a 15 month old son. My back problems have caused me so much grief. Since December I have gained about 30 lbs. I used to be very active in kickball and softball. Now I cant even shave my legs. The weight gain is depressing also as the neurontin causes it and I have to take it...when in return the weight gain makes my pain worse which makes it even more painful to move...its like a horrible never ending merry-go-round. My Dr called last week and said my xrays show mild to moderate ddd in my lower back...I'm at a loss for words. Not sure how to handle this as I am only 22. :-'( I will learn more on the 22nd at my appointment. The Norco and muscle relaxers help somewhat- meaning I can tolerate it my pain level is any where from a 2-3 with it...without its a constant 8 I would say. But with my age my Dr seems reluctant to prescribe it. If I am in really bad shape I go to the emergency room...the doctors know me well and usually give me a shot in each hip and a dose at the er then a script to have filled. they say come back whenever I need to...I just feel weird about it..going to the er for medication.
  • your doctor what you found to work best for you.there's no point taking medication if its no working for you .
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • duplicated post
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • At my last appointment I asked him if there was anything else he would give me for my pain because what I'm on isn't working, he told me its not easy for him to prescribe narcotics because he is only a PA and just raised my neurontin and prescribed celebrex. I have what they call a clinic card, its really crappy insurance provided by the county so I'm not able to see an actual Md. My last appointment was in April and since then I have had blood work and xrays done...and my pain is worse now than it ever has been and its mostlyin My right hip and right thigh. I just need relief and don't want to sound like a drug seeker. I mean do I go in there an say "look, this is what helps and I need your help"? Obviously there is something going on with my back. Hes already said its hard for him to give pain meds that was before we hsd any films of my back though. /sigh I'm going to demand an mri when I see him next. I'm just really frustrated and feeling hopeless.
  • Why not just tell the PA what you have found works the best for you? My experience is that being upfront gets the best results. I think that in general, the pain MDs and PAs know how to recognize the drug seekers and, quite frankly, who cares what he or she thinks of you as long as they are responsie to your needs. When it comes to doctors, I have learned to definitely not be shy and to ask every question that I have and to keep asking until I have enough information to understand the situation. No one is a better advocate for you than you! Most of us have to learn to be straight forward with the docs as we were all taught that they were the experts. Reality is they are diagnosticians, granted on a very complex machine, but they run through their decision trees just like your mechanic does (should anyway :) ). I wish you the best of luck but remember to be firm, not antagonist, just firm. Let us know how it goes. Jerome
  • ...about why it is difficult for a PA to prescribe narcotics. I finally came to the point in my medication needs where my PA became uncomfortable. Based on my personal experience it seems more a personal comfort level of the PA versus an inability to prescribe. Of course there is always the possibility that your PA has different rules.

    Like JR says it is always important to be your own advocate and be 100% honest with your medical team. I told my PA exactly what worked, exactly what didn't, and mentioned any side effects that were deal breakers for me. The nerve meds commonly prescribed not only make me suicidal, they push me to the brink, where I had planned my demise to the smallest details even going so far as to make my funeral arrangements like music and such. They make me rage like an angry bull, they kept me in a foggy haze most of the time where I couldn't think of words that I needed to communicate. It was ugly.

    Because of my personality, which is independent to the power of ten, and my need to work to feel like I contribute to my family, I needed medication that didn't make me loopy. If I hadn't been honest with my PA, and found he was uncomfortable prescribing stronger meds than norco, he never would have referred me to my PM clinic that I am completely in love with. I wouldn't be sitting here recovering from the permanent SCS implant had I not told the truth. I wouldn't be getting the first relief I have had in 12 years! I'm glad I spoke up. It literally changed my life. I've started crying happy tears and can't type anymore, good luck to you.
  • I can totally understand about how the nerve meds make you feel that way. Not only is the neurontin causing weight gain but also horrible migraines. It does help somewhat but only to the point where I am able to do as little as possible.
    I had googled if its illegal for PA's to write scripts for narcotics in Texas and everything I found said that they can except for methadone and suboxone when treating addiction.

    I just hate the looks my Dr gives when I tell him that I am in pain, as if he's thinking "she is only 22, there's no way she in pain". Now that my xrays show that there is a legitimate reason that may be the cause I hope and pray he will listen to me. It was only my first appointment with this Dr so maybe that's why?

    I'm for sure going to tell him that when the er prescribed the norco I was actually able to move. Every night I go to sleep hurting and every morning I wake up crying because I am so stiff. Also I will be requesting an MRI.

    Thank you all for responding!
  • Did you find another type of medication to help with your nerve pain? I'm so sorry that you all are having pain! I feel like if I had something along with the celebrex and neurontin I would be okay, somedays its just excruciating. I would rather sleep all the time since I don't hurt while I'm sleeping.
  • I think you may be talking to me but if not, disregard. I am one of those who does well on narcotics with no side effects. They do not feel like anything to me if that makes sense. I was never getting pain control I was content with but after I was prescribed oxycodone (IR) I was able to return to work and now coupled with my SCS I feel like a new person! The thing is I have a lot of mechanical pain as well so that's why I think the combo has been a miracle to me. I still get extreme sciatic pain that is too much for the SCS to handle so I have to crank it up and ride it out. I have to keep my unit up so high that my legs feel like they weigh a thousand pounds a piece and are numb. Since I'm slready in a wheelchair I'm unconcerned.

    Trust me when I say I get it when it comes to being young and needing pain medication. I was 21 when I became disabled and fought like heck to earn trust and respect. I honestly believe its been my unwavering willingness to try ANYTHING to get rid of this bilateral sciatica that helped me earn that. Heck I even went through 6 accupuncture treatments even though my fibromyalgia clearly made it torture. (Every visit reduced me to a quivering sobbing mess writhing in bed for 4 days!) I've had multiple EMG's and had one doctor tell me I'm his bravest patient, that he would never sign up for more than one voluntarily. You'll do anything to make it just stop.

    Now that you have verifiable proof for why you feel the way you do it's going to be all about building a steady relationship with your doctor. Always always always be honest and let them know what you are experiencing without being forceful. I think this is especially difficult when we are young. I've personally experienced the difference between me and someone twice my age when it came to requesting medication in the hospital. I just had my "worst I've ever seen" (according to the surgeon) diseased gallbladder removed, had an ERCP for SOD with stent placement and pancreatitis. I had to beg for help and was continually refused but my roommate had a back issue causing pain and they told her over and over again to tell them if she wanted more and/or higher meds!!! She took no time to go "oooh that hurts" without a tear in sight while I was sobbing in agony. Nobody believes you when you're young it seems.

    Anyway lol guess that got long! Just keep at it, be willing to try everything at least once, be friendly and respectful and hopefully your doctor will see you are in pain and help you find medication that works while still being comfortable with prescribing it. Keep us posted, I wish you many pain free days in the future. Turning my wonder machine up and hitting the sack!
  • Well my Dr switched the neurontin to lyrica.
    The insurance I have has a 3-4 month waiting list to get the lyrica. >:-o

    I was so angry when the pharmacy told me this! I asked, "so what do I do for 4 months!?" And her response was, "its not my problem." WHAT!?!

    So now I am left with my muscle relaxer and celebrex. I called my Dr and left a message but he wont get it until after Tuesday. :-(

    he did give me a referral to a neurosurgeon ( the same one my mother had for her neck surgery) so I'm hoping once they get the results of the mri he will be able to help with my medication situation.
  • Maybe mention Pain Management as a possibility. I have not heard of a waiting list for Lyrica. I take both Lyrica and Norco for my pain management and the 2 together with Celebrex have worked well for me. Also if your PA or Doc have access to Lyrica discount cards it really cuts the co-pay. Mine went from $80 CP to $20. I hope you can find help and relief.
  • The insurance I have is through the county for low income families.

    Since the lyrica is so expensive you have to go through the process of filling out an application and waiting to be put on the list IF you qualify.

    The doctor I see isn't even an MD he's a physician assistant so he wont write anything stronger than tramadol which I refuse to take due to seizures.

    I usually end up going to the ER when it gets really bad. The Drs there know me well and understand my situation...they are only allowed to give 20 of the 7.5 norco at a time and the script is usually 1 1/2- 2 every four hours. So it doesn't last but a few days.

    I honestly wish I could cut my legs off...its like having a toothache and wanting to Yank the tooth out because you know it will feel better. :(

    Thank you :)
  • Don't you have some sort of contract with your treating doctor/PA? I know that many , many doctors frown on constant visits to the ER for pain management since pain itself is not considered a medical emergency. It may very well be that with the phone calls, the complaints of problems with the other meds, and the ER visits that the PA is not comfortable writing you for opiates as well since you said you have gotten them from the ER.You also said that you have only had one appointment with him so I'm pretty sure that all of the phone calls , ER visits and complaints about side effects aren't helping and in fact may be working against you in his treatment of your pain. I don't know of any doctors these days who are willing to prescribe vicoden/norco without valid testing results and even then, GP's/PA's don't usually want to deal with it, especially for a new patient they don't know.
    You are very young, which automatically goes against you when it comes to opiates , and it seems that you have had complications or side effects with most of the other meds, and it may appear to the PA that you are hounding them for norco/vicoden. Nerve pain does not always respond well to opiates, which is why he is giving you medications that are used to treat nerve pain, rather than opiates. Some side effects, in fact most, will go away after taking a new medication for a few weeks or months , and it may work out better for you to give the appearance of trying a new medication for a time period before deciding that it is not working. All of the different medications available, used in combination, contribute to lowering pain, but will not eliminate it. We have to learn to adjust to some level of pain and how to manage around it as well.
    You said that you had xrays and they showed ddd? Xrays can only show the vertebre, not the discs, so I am unsure how it could have shown ddd..but anyway, ddd ( degenerative disc disease) is not really a disease at all, it is simply something that happens to everyone as we age. In fact, the majority of people over the age of 18 will have at least some drying out of the discs, and for most doctors do not consider it anything of substance unless there is severe drying of the discs and disc height, beyond what is considered a normal level for your age..
    If you have been having pain in your hip and thigh, it may have nothing to do with your back at all, but could be something in your hip instead.
    The other thing is that the inactivity is not helping you, which most likely makes the stiffness and pain worse. The longer you avoid bending, stretching and doing normal activities, the worse those symptoms are going to become. Even without pain medications, you need to constantly try to stay as active and move around as much as possible.
    I am not trying to be hurtful to you but your posts seem to focus on how to get your new PA to give you norco/vicoden, and that isn't the only way to manage pain...I wish you the best.
  • I have no contract with my Dr. And this post is old. I have seen him twice since I posted this. My xrays showed "mild to moderate degenerative changes"

    I have been taking the neurontin since last December with no relief.
    I had an mri done Friday and wont hear anything until the end of this week.

    I know me being young and going to the er for help does look bad, but when my hip pops out of place or I can't even bend over to change my sons diaper that's all I can do.

    My pa has told me that he would write something if he was permitted, but any narcotic has to go through the actual dr and he wants to see the mri results, I would like to let you know that I'm not calling my Dr every day or every week.

    The first time I called was when my hip dislocated while i was at walmart and was taken hospital, since I have COUNTY INSURANCE its takes weeks to see the doctor. I didn't know what else to do besides call the Dr to see if I could get in sooner and if they could call something in until the appointment.

    AND the reason I called this last time is because I no longer have the neurontin and have to wait for months for the county to approve the lyrica and wanted to see if he could let me refill my last script for the neurontin.

    I have tried physical therapy, exercising, weight loss, ice, heat, I even talked my husband into buying a new bed.

    It really upsets me when people think, " oh she's young she must be looking for drugs" would it be different if I was your age? If I wanted drugs as bad as you seem to think it looks I do, of course i am asking for help when the only thing that does help are the norco, I wouldn't be on here looking for help and asking questions, I would be buying them on the streets.

    And I appreciate your response but it really makes me feel bad. I have tried everything I can so far. And if the mri shows that its something with my hip instead of back I'm still in pain.
    I do know that DDD is not actually a disease I have done my research since my doctor told me this. And also you should know he did tell me it is hereditary, being as all of my elders besides my father have DDD.

    I'm sorry if I seem rude but I have talked to many people about my situation and most of them are very understanding and when someone brings up "just looking for pills" it bothers me. Just because I'm young there's no way I could be having back or hip problems?

    Its just really frustrating for someone to say that. I have been dealing with back pain since I was 14.

    So...thank you.
  • I do understand that you are in pain, I am not doubting that, but you do have several strikes against you, one of them being your age. Would it make any difference if you were my age? I don't think so, in fact my back problems started 15 years prior to my first operation , and all of that time was spent learning to cope with the flare ups without meds..when I finally had to go see a surgeon, I wasn't given anything but Ultram and some anti inflammatories and this was after more than a year of debilitating pain that left me unable to sit or stand for any length of time.
    When you dislocated your hip, I assume that the ER documented the dislocation and you have xrays showing it? If you do, then you need to bring the copies of those and the reports into your PA.
    DDD is going to be found in the majority of the population since it is a condition that occurs as we age.
    You keep saying that only the Norco helps, which is why I said what I said in my previous post.. going to the ER for pain is not going to make any doctor comfortable with writing pain meds for a new patient. I have been going to my GP for almost 15 years and he does not write for pain meds , for anyone. There are many other meds that might help with the pain, but like the rest of us, it will be trial and error to find them. The majority of us, take some medication to help with the neuro type of pain, including anti depressants used for chronic pain, as well as muscle relaxers, anti inflammatories, topamax ( which incidentally might help with the migraines),and if we are lucky, we may some where down the road be given a trial of opiates to see if they help, IF they are warranted for our conditions.
    Hopefully, you will find that there is nothing mechanically or neurologically wrong with your back- and if there is, the surgeon consult will be able to help find and be able to treat the cause of your pain...I'm sorry if I upset you, that wasn't my intent. I just see things in your posts that would make most doctors hesitate to prescribe opiates.
  • Did they do an MRI of your back or your hip? I'm a bit confused on that one the way you wrote it...sorry...LOL

    And if it was done on your back...which levels?

    Just know that we are trying to help you and are just saying what "could" be going through the Dr's mind when you go to the ER a lot...

    That is only meant for true life/death emergencies and unfortunately can put a red flag in your records when you go there just for some mild narcotics...

    And as mentioned...DDD isn't really shown on an x-ray so it's strange how they said they could see changes like that....

    The hip going in/out of joint is something completely separate from having disc issues in your spine....What did the x-ray of your hip show? Do they have you doing at home PT for your hip?

    And I know the post was a month ago....but is the doubling of the amount of Neurontin helping at all? Since you went from 1200 to 2400mg in April...At least you can take this until the Lyrica arrives...

    As mentioned....unless there is something that is so obviously surgical....managing chronic pain is usually best with a Pain Management Dr....And one who can provide a compreshensive pain program.

    The things that are done daily/weekly/monthly are:

    TENS unit
    Aqua therapy
    Daily exercise to keep core and other muscles strong
    Nerve pain medication
    Muscle Relaxer
    Opiate medication
    Sleep medication
    Steroid medication
    Counseling/Therapy to learn how to emotionally handle chronic pain
    Eating healthy (including avoiding inflammatory foods)
    Not smoking

    Just to name some more things that most of us have to use to help keep our pain at a 5-7 level...

    Think of each thing as a piece of a puzzle...

    Keep us posted on the results and where you go from here...

  • Findings: There is a mild central and right sided disc protrusion at L5-S1 with accompanying osteophyte formation. A component of compression of the right s1 nerve root is present with relative sparing of the s1 nerve in the posteriorly located thecal sac at that level. A spinal stenosis is noted at that level.

    The l4-5 level demonstrates a mild central disc protrusion with mild ventral extradural compression of the thecal sac and perhaps slight lateralization towards right side. The spinal canal is on the lower limits of normal in a size associated with that disc protrusion.

    The l4-5, l2-3, l1-2 and t12-l1 levels are unremarkable. The t11-12 level demonstrates a mild protrusion to the right of midline with mild ventral extradural compression of the thecal sac. No spinal stenosis is noted.


    Mild right sided disc protrusion at t11-12

    Moderate right sided disc protrusion at l5-s1 with compression of the right s1 nerve root.

    Mild central disc protrusion at l4-5 with resultant borderline spinal canal size at that level.

    Still not sure what all of this means. I have an appointment in two weeks with the neuro surgeon who performed my moms neck surgery. Anyone have any input on what this stuff means??
  • Since non of us are Drs....we really can't say what those findings mean...

    The part I see that is good is only Mild and one level Moderate...

    Non are severe...

    But...MRIs are just one small part of the story....As mentioned...some people can have a terrible reading on their scans but absolutely no pain at all. And then others can have good readings but a lot of pain.

    So...it's good you will be seeing a Neurosurgeon to evaluate...

    As I wrote...I personally wouldn't have surgery unless there is possible paralysis....Surgery is not meant to solve all the pain problems unless all your pain is nerve related.

    So it's really about using all the modalities that I mentioned in my last post to help take the pain down some notches...

    Good luck..
  • I definitely don't want surgery. The only thing that's stopping me from physical therapy is the pain. The first time I went in wasn't too bad then by the third time they had students from the local college there and were letting them do the physical therapy and the girl that was working with me really made it worse. My doctor said to not go back until I see the neuro surgeon.

    I ice my back every day and my mom is letting me borrow her tens unit which helps somewhat. I've tried stretches and light exercise but my right leg hurts so bad all the time and if I move the wrong way it goes into some weird numb/tingly thing so I'm afraid really.

    I know its a bad idea but I had some medrol dose packs from a while back, and I've been taking two a day. It really does help. With my county insurance you're lucky to have an appointment once every four to six weeks and since he stopped my neurontin and prescribed lyrica, I have had neither. My neurontin is gone and I'm still on the waiting list for lyrica.

    So for now I'm just taking it easy and waiting to see the NS. I really feel what I need are the steroid injections because the dose pack helps.

    Bleh! I just want to be able to move and fix this crap already! I know the mri says "mild" but it feels worse than giving birth!
  • I found out almost a year ago I have a mass in my central spinal canal.l 5 s 1 within the cord I alsohave 2 disk bulges and a tear in my l 3 /4 disk.and ddd..so even I went to e E R the doctors prescribed me vicodine soma and naproxin they worked pretty good. they only took one x ray and that was it. so I go to a clinic for more help they give me a referral to have a m r I then the doc refers me to a nurosurgen he says I need surgery. I see a neurologist he says ok I can have surgery I'm still waiting and the pain in My leg never stops.I asked the doctor if I could get something more strong so they gave me norco 5-325 and that's all.I'm. Taking 3#nd 4 of them and still. Be in pain..not to metion the way my muscles pull against eachother is driving me crazy...I need help.
    Leticia parsels
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    The first thing that you are doing wrong is taking more than you are prescribed. NEVER, ever do that. All it does is drive your tolerance up and offers nothing in the way of pain relief. It will however, cause you to experience withdrawal when you run out, and eventually, the ER and no doctor is going to give you any type of pain medications if you abuse them.
    If the medication is not working, contact your doctor and ask them what you should do to ease the pain. Use Ice, heat, hot showers, baths, topical ointments and creams available in any pharmacy to ease the pain in the meantime.
    When are you supposed to see the surgeon for the surgery? What type of surgery is planned?
  • You could have sacrolitis. It is something that happens to some woman after they give birth. I know your baby is 22 months old but I had the same issues about a year after I gave birth. My back hurt so bad. I do have scoliois , but the relaxin that is released during pregnancy can totally screw up things in your body. After I had my son my back hurt so bad and they only found 4 mild bulging discs in my lumbar the pain was awful
    Start being your own advocate. I know what your going through. Especially having to take care of a child while in pain. It's not easy.
    28 F. Chicago. Fusion from t-12 l-4 from scoli in June 2013. Torn bilateral hip labrums. Arthroscopy to fix labrums January 2013 and march 2013. SI pain from hip surgery Lupus, RA, antiphosphidlipid antibody- hypermobility syndrome ( Marfan syndrome)
  • mrsfishmmrsfish Posts: 3
    edited 02/01/2014 - 6:30 PM
    Wow some of the comments from people. Sure DDD happens to everyone but it can affect others differently. I started having issues at 32 and had my irst MRI 2 yrs later and found out I had DDD sciatica, bulging disc L5 S1 so I understand I though the EXACT same thing you I'd I'm way to young to already have issues like this but I did so from there went trying all the anti inflammatories, ice,heat, then the lower narcotics till eventually I found a med that worked wonders but I was so depressed for about 9 years till finally i asked my doctor if I could try Cymbalta and I am So very glad I did it help some with my back and worked amazingly for my depression I can now hold. Part time job and do o much more than I old before. You REALLY do need speak up for yourself BUT I know how it is out there with al, the crap in the media about prescription drug abuse and people accidentally dying from drug overdoses has made it to where doctors are afraid to prescribe narcotics it's a pain in the butt.
    BTW the PA can prescribe narcotics they are lying when they say they can't it's probaby because the PA personally doesn't like to prescribe narcotics at all or is afraid to. I currently see a PA whom I hate and he writes my script for suboxene (thers so much more to my story and of how i even started the suboxene) which doesn't work st all for my pain and has made my depression come back with a vengeance I had NO idea that stopping narcotics and starting suboxene that i would get so damn depressed its been awful even though I'm on Cymbalta and have doubled my dose I'm still severely depressed I'm I the process of trying to find a new doctor who is willing to work with me.
  • mild unremarkable, going to er for meds and on and on. if this does not scream, this is what is wrong with some of these posts then i don't know what is. oh i forgot being young also. these are all red flags and sandi is correct. there are so many things wrong here i don't know where to start. yes x-rays only show bones not herniated discs if this is all true then you need all of the other tests that are aviable, mri, cat scan, nerve conduction tests disography, steroid injections to truly diagnose you and for heaven's sake, don't go to the er for meds. get a pain doctor and sign a contract. all of those er visits must cost a pretty penny. they charge about a grand just to be seen. how do you pay for all of these visits?
    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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