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Forced to eliminate Opioids

As the subject indicates eliminating my opioid pain meds is not my choice. I am not an addict or someone who has abused their meds. I follow my doctor's instructions and that where I'm having a problem.

I have chronic neck and back pain, which started to become persistent starting in 2006. I have degenerative disc disease and arthritis. I was sent to pain management where I was started on opioid pain meds. I started out taking Vicodin 7.5mg and when I left the practice due to losing my health insurance at the end of 2011, I was taking Kadian 50mg twice daily and Oxycodone 30mg 4 times a day. I was also taking Lyrica and muscle relaxers. The dosage increase was probably due to tolerance and slow worsening of my spine.

Being a Veteran, I was allowed to enroll in the VA heath care system for my medical care. Immediately, my 75 year old PCP said my opioid dosage was excessive in a very demeaning way. Another time he arrogantly asked how long I had been an addict. An MD had prescribed all my pain meds, not me. Each doctor that I saw spoke badly of opioids for pain. There was so much negativity.

In January of 2012, I had my first pain management appointment. I asked if my meds were excessive. She said yes and no, but decided that the nasty opioids should be eliminated from my daily regimen. She told me that too many Veterans have been dying in their sleep from their opioids. She quoted that I had a 6% chance of dying in my sleep. I'm pretty passive and non-confrontational and was glad that she would prescribe me anything. She prescribed Morphine SR 75mg 3 times a day and Oxycodone 5mg 4 times a day. I was given a place to reduce my dosage of Morphine by 15mg each mo.

I'm only able to be seen every 6 to 8 weeks, because of the doctor patient ratio. At my next visit, I discovered I had a new regular doctor, who was also going to follow the taper plan. I actually did OK until I started drifting below 45mg of Morphine SR. Then the pain slowly started to increase. At 30mg of Morphine SR, that seemed like the lowest I would say I could live with. Every time I explained how I was doing to my PM doctor, I was met with resistance. Especially since he discovered I'm depressed, even though I've had that since I was a teenager. He said we would control my pain with non-opioid pain meds, specifically Meloxicam, Tylenol and Capsaicin cream.

A month ago, he read my sleep study report. One bad or good thing about the VA is that all my doctors have access to my records. He wasn't the one that requested the sleep study. The Nurse Practitioner that I see at the Mental Health Clinic suggested it after I told her I didn't sleep well. I figure on account of my pain, because it's really bad when I wake up. It reported that I have severe sleep apnea and mild central sleep apnea and suggested weaning off my narcotics and other CNS depressants. Well, that just reinforced his idea that I eliminate my opioids I was instructed to eliminate taper off all opioids in 2 weeks. That's 30mg of Morphine SR and 5mg of Oxycodone 3 times a day.

I tried my best to follow his plan, not in 2 weeks, more like a month and I'm down to 15mg of Morphine once a day. I try not to take any Oxycodone, but the pain will get so bad, I give in and take 2.5mg. It's only been 2 days that I've been take one Morphine SR a day and today the pain began increasing all day to the point where it was more than I could stand and broke down and took a second Morphine SR and 2.5mg of Oxycodone.

I only want to use the opioids because the of the pain. The other stuff he has prescribed doesn't help at all. I'm also on 1,200 mg Gabapentin 3 times a day for a year and Methocarbamol. The problem is that I don't understand what's happening. I had a lot of pain back in 2006. I don't know if the severe nerve pain I'm experiencing is simply from opioid withdrawal or I have a lot of pain that's been helped by the opioids.

I should also mention that the VA will send me to an outside facility for ESI's. The last cervical ESI I had late summer helped modestly for a week. I was supposed to have 3 in a row, but was unable to get a ride for the last 2. I plan on asking him to request a new authorization as I think I can get a ride.

Any suggestions will b appreciated. I can provide more information if requested.

Thanks,
Scott

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Comments

  • hi have a read in the intractable pain guide to survival [sorry i don't know how to do the like but if you google it } that many doctors try the don't take narcotic or if you stop you pain will be better rubbish at some time in a patient's treatment ,its total BS .narcotics are there for a reason without them many of us would have NO quality of life what so ever ..it was my consultant that told me to have a look at the on line intractable pain guide ..its very easy to read and free to down load {handy if you have to explain your narcotic taking to anyone .}.yes there can be problems with narcotic and many of us will become dependant on them but its the best of a bad situation in many cases ..in the uk the pain killers are a last resort but as long as you are genuinely ill you will get them...i am sorry about your pain .and i wish you a better day take care
    tony{UK}
    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
  • dilaurodilauro ConnecticutPosts: 10,045
    edited 01/18/2013 - 3:19 AM
    For starters, everything I read indicated that you have not had surgery and that your diagnosis to date has been Degenerative Disc Disease and Arthritis. Both not uncommon, almost everyone by the time they reach 25 will show some signs of each. For the most part, both are managed through approved exercise programs and OTC NSAIDs.

    So, based on this, I would say that your narcotic dosage is high,almost very high considering you condition identification.

    There is a huge problem when people feel that narcotics is the only way to manage pain, even moderate to severe pain.
    Its good that you have a mix of medications, which include nerve medication (Lyrica) and some muscle relaxer which you didnt identify. There are so many other components for pain management. Physical and Aqua Therapy, TENS units,
    Traction, Massage, Acupuncture to name a few.

    I was a bit surprised about an ESI. Unless you have not posted more about your condition, Spinal injections would not seem warranted.

    The Sleep study is very important. This way they can identify if you have Sleep Apnea. The statement you made about dying in your sleep, many people with Sleep Apnea are at a risk with that. Using a CPAP machine a night is just one way in working with Sleep Apnea.

    Your statement .......
    Scottm said:

    I only want to use the opioids because the of the pain. The other stuff he has prescribed doesn't help at all.
    would be very alarming to any doctor. I would look at the total picture and see what all of the options you need
    to manage your pain. I have not read anything regarding surgery in your future, so minimizing narcotics would be
    a goal.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Forgive me if there are any typos in the following information as I had to transcribe it from the original documents.

    ACDF C5-C6 in 1998

    Cervical MRI – 03-02-2011

    C2-C3: There is central disc bulge at this level, which indents the central ventral portion of the subarachnoid space but does not abut the underlying cervical cord. No foraminal stenosis.
    C3-C4: Annular disc bulge, which completely effaces the ventral portion of the subarachnoid space and abuts the underlying cervical cord.
    C4-C5: Broadbased disc bulge which completely effaces the central portion of the subarachnoid space, but doesn’t abut or indent the underlying cervical cord.
    C5-C6: There is broadbased disc bulge extradural defect that appears to represent bony changes secondary to fusion at this level. This effaces the ventral portion of the subarachnoid space and minimally indents its ventral component narrowing the AP dimension of the cervical cord approximately 15%. No foraminal stenosis.
    C6-C7: There is broadbased disc protrusion across midline effacing the ventral portion of the subarachnoid space completely.There is quite prominent bilateral foraminal stenosis marked on the right and there is narrowing of the AP dimension of the cervical cord at this level.

    Lumbar MRI – 09-23-2011

    At the T12-L1 level mild disc desiccation is noted.

    At the L1-2 level mild circumferential disc bulge is noted without disc protrusion or stenosis.

    At the L2-3 level more prominent disc space narrowing with grade-1 retrolisthesis is noted with moderate circumferential disc bulge noted. Small posteromedial annular tear with small disc protrusion is noted. Ventral thecal sac indentation is identified with mild to moderate central canal stenosis. Circumferential disc bulge component produces some mild bilateral neural foraminal narrowing.

    At the L3-4 level disc desiccation and mild circumferential disc bulge are noted slightly asymmetric to the left. Mild grade-1 retrolisthesis is noted without disc protrusion or central canal stenosis. There is moderate left and mild right neural foraminal narrowing noted.

    At the L4-5 level disc space narrowing with grade-1 retrolisthesis is noted with moderate circumferential spondylitic bulge. Mild bilateral poaterior facet arthropathy is noted. Some mild central canal stenosis is identified. There is moderate right and mild left foraminal narrowing.

    At the L5-S1 disc space narrowing and moderate circumferential spondylitic bulge are noted. Small posterocentral disc protrusion is identified. Partial effacement of extradural fat is noted with mild central canal stenosis. Some mild bilateral inferior neural foraminal narrowing is noted.

    The conus medullaris appears normal at the T12-L1 level.

    Cervical MRI – 12-12-2011

    There is normal cervical lordosis. Vertebral body heights are maintained. There is bony fusion of C5-C6. No acute fracture is seen.
    No significant abnormality is seen in the prevertebral or paraspinous soft tissues. Limited visualization of the posterior fossa appears within normal limits. Artifact limits evaluation of the spinal cord, however, no definite signal abnormalities identified. There is decreased signal intensity involving the C1-C2 articulation corresponding to sclerosis, which is likely degenerative in etiology.

    C2/3: No significant disc abnormality, central canal stenosis or neural foraminal stenosis.

    C3/4: No significant disc abnormality or central canal stenosis. There is uncovertebral hypertrophy on the left which results in mild neural foraminal narrowing.

    C4/5: There is minimal diffuse disc bulge without significant central canal stenosis or neural foraminal stenosis.

    C5/6: There is a bony fusion at this level. There is a left paracentral osteophyte only seen on the axial images that touches the ventral thecal sac without compression. Facet hypertrophy results in mild bilateral neural foraminal narrowing.

    C6/7: There is a diffuse disc bulge with irregular central and right paracentral protrusion which indents the ventral thecal sac resulting in mild to moderate central canal narrowing. Facet hypertrophy results in severe right-sided neural foraminal narrowing and moderate left-sided neural foraminal narrowing.

    My muscle relaxer is Methocarbamol.

    This is probably controversial to most people, but due to my personal reasons, I have not chosen to have surgery at this time.
  • Hi Scott,
    As Dilaurio said , given that the conditions you stated are considered normal findings ona MRI
    You were taking a lot of opiates. When were you last given an updated MRI or CT scan?
    It seems to me that getting a new scan done to get a more current idea of what's going on
    Is appropriate if your last one is over a year old.
    Tapering opiates can cause temporary increases in pain until your body starts producing
    It's own endorphins again.
  • ScottMSScottM Posts: 54
    edited 01/18/2013 - 9:05 AM
    My last cervical MRI was 12-12-2011, Lumbar 09-23-2011.

    Just of curiosity, "Facet hypertrophy results in SEVERE right-sided neural foraminal narrowing and moderate left-sided neural foraminal narrowing." is considered normal?

    I have to say that I am really confused and concerned.

    Over the years, I've had numerous ESIs. I have a cervical traction device, TENS unit, been to physical therapy and last summer pool therapy. I was amazed that after 3 visits to pool therapy, my pain went from acceptable to severe.

    On the sleep apnea situation, besides eliminating opioids, there is no follow up planed, which I was concerned about. At the time of the sleep study I was taking 30mg of morphine SR x 3 and 5mg Oxycodone x 3.
  • ScottMSScottM Posts: 54
    edited 01/18/2013 - 9:55 AM
    backache99 said:
    hi have a read in the intractable pain guide to survival [sorry i don't know how to do the like but if you google it } that many doctors try the don't take narcotic or if you stop you pain will be better rubbish at some time in a patient's treatment ,its total BS .narcotics are there for a reason without them many of us would have NO quality of life what so ever ..it was my consultant that told me to have a look at the on line intractable pain guide ..its very easy to read and free to down load {handy if you have to explain your narcotic taking to anyone .}.yes there can be problems with narcotic and many of us will become dependant on them but its the best of a bad situation in many cases ..in the uk the pain killers are a last resort but as long as you are genuinely ill you will get them...i am sorry about your pain .and i wish you a better day take care
    tony{UK}
    This guide was very interesting. I can relate to it. Especially the sleep topic. My blood pressure has sky rocketed in the past year. The VA has given me two prescription for my BP. I just checked it at home and it's 163/99. My pulse rate was only 74. I was content with my situation during the summer when my Morphine was 30mg to 45mg. But since then it has been all down hill.

    By the way, my pain management doctor told me that no one has died from pain, but they have from opioids.
  • dilauro said:
    For starters, everything I read indicated that you have not had surgery and that your diagnosis to date has been Degenerative Disc Disease and Arthritis. Both not uncommon, almost everyone by the time they reach 25 will show some signs of each. For the most part, both are managed through approved exercise programs and OTC NSAIDs.

    So, based on this, I would say that your narcotic dosage is high,almost very high considering you condition identification.


    There is a huge problem when people feel that narcotics is the only way to manage pain, even moderate to severe pain.
    Its good that you have a mix of medications, which include nerve medication (Lyrica) and some muscle relaxer which you didnt identify. There are so many other components for pain management. Physical and Aqua Therapy, TENS units,
    Traction, Massage, Acupuncture to name a few.

    I was a bit surprised about an ESI. Unless you have not posted more about your condition, Spinal injections would not seem warranted.

    The Sleep study is very important. This way they can identify if you have Sleep Apnea. The statement you made about dying in your sleep, many people with Sleep Apnea are at a risk with that. Using a CPAP machine a night is just one way in working with Sleep Apnea.

    Your statement .......
    Scottm said:

    I only want to use the opioids because the of the pain. The other stuff he has prescribed doesn't help at all.


    would be very alarming to any doctor. I would look at the total picture and see what all of the options you need
    to manage your pain. I have not read anything regarding surgery in your future, so minimizing narcotics would be
    a goal.
    When I wrote, "I only want to use the opioids because the of the pain. The other stuff he has prescribed doesn't help at all."

    What I meant is that I want to use the opioids, because of the pain. I don't want to take only opioids. When I wrote "I only" indicated that I didn't want to use them for recreational purposes, only pain control. The other meds that I've been prescribe are not working by themselves (minus opioids). Lyrica and then later Gabapentin was a big help with the tingling and numbness I had felt in my hands. To be honest, I'm not sure if the Methocarbamol is helping. The Meloxicam was prescribed to help with the stiffness and achyness when I woke up. But out of all my meds, the opioids provide the best pain relief.
  • It seems to me what your mri report said were reasons enough to explain your level of pain and the medication dosage. I feel for you because I recently had to change drs and I had a drastic change and I am feelin the difference. I dont like how tbey can read t our reports and just change it up on you and them with no end game plan to boot. What is that about? Is there any way not to go thru the VA system. Maybe get an updated mri and prove that its still as bad or maybe things have gone to worse. I hate this happened to you. I still cant understand. I wish you the best.
  • sandisandi Posts: 6,302
    edited 01/19/2013 - 6:36 AM
    I saw that you posted your recent MRI's after I posted previously......there are some issues with your cervical area, C5-6 has a bit of bony overgrowth on the left side, but that isn't in contact with the spinal cord but you do have some facet arthritis ( facet thickening) so that may be causing some pain and some mild compression of the nerves , and at C6-7 you have some severe nerve compression on the right side and a moderate amount on the left . There is also some mild-moderate compression of the spinal canal.
    When it comes to what meds are appropriate , given the issues with sleep apnea, etc , that is something that you are going to have to discuss with your doctors. I would strongly suggest though that you at least arrange for a surgical consult with both a board certified, fellowship trained spinal neurosurgeon and an orthopedic spine surgeon as well. They can tell you better than any of us here if your findings warrant surgery now or in the future and give you some suggestions for treatment. ESI's are only meant to be a temporary , at best form of treatment. That is assuming that they even are able to find the right spot, and you should have no more than 3 in the same area within a year, otherwise the steroids can cause problems of their own..........
    Even though you may not be wanting to go down the surgical road right now, if it was possible to eliminate the pain and fix the problem , as well as avoid any further deterioration in those areas, would you consider it?
  • I haven't had any opioids since yesterday and today the pain in my neck and back is indescribable. I can't write much.
  • I'm sorry that you are in more pain Scott. I can only hope to reassure you that this is perfectly normal considering the tapering of the medications. I know that it isn't easy, and that my saying that won't help you right now. Try to use some heat or some ice, or better yet, alternate both- 15 minutes on, 20 minutes off and see if that helps ease some of the muscle ache....
    There are antidiarreheals that are available over the counter that may help to reduce any gastric upset that comes from stopping the meds as well.
    The good news is that the worst of the withdrawal will be over in a couple of days, with day three being the worst usually, then it does get better...
    As far as the pain goes, do you have a TENS unit? Hot showers do help and so do soaks in the bath tub if you can manage them. I'm truly sorry for what you are going through.
    Sandi
  • ScottMSScottM Posts: 54
    edited 01/19/2013 - 11:56 AM
    In one years time, I was tapered from taking Morphine SR 75mg x 3 and Oxycodone 5mg x4 to Morphine SR 15mg x 1. Even with the one 15mg Morphine SR per day the pain had increased dramatically, but I could still function. The pain from my problems areas, neck and lower back is almost more than I can take. I had already tapered way down over a long period of time, it's not like I've gone cold turkey from a high dose.

    I am so apprehensive how much pain I will have when it's done.
  • Scott,
    The best way that I can try to explain it to you , is that your body has acclimated to the pain meds over the time that you have been on them......this is where tolerance comes from- your body is used to having a set level of opiates in your system. Normally, when we have pain , our bodies increase our endorphins to help block the pain signals- when you are taking opiates, the body shuts down the manufacturing of those endorphins or reduces the manufacturing of them because of the opiates- as time goes on, your body develops a tolerance to the pain meds and you wind up having to increase the dose- it's amazing what a single 10 mg dose of an opiate can do change our pain perceptions when we first go on opiates, but rather quickly, your body starts telling you that that little 10 mg dose that was so helpful early on, no longer is-as time goes on and our conditions deteriorate more, and our body adjusts to having those pain meds, we find that our body is no longer recieving adequate pain control anymore, so we increase our intake , and even add breakthrough meds to help ease the pain like it did in the early days....
    Now, because you no longer have the opiates or rather not at the levels that they were at, your body is attempting to tell you that - so the pain levels increase, both from the lack of opiates but also because there is nothing to help ease or change our perceptions of it...it will take a bit before your own endorphins start to produce enough endorphins for it to ease the pain levels some. I am not saying that the endorphins will take care of all of it, but it will help.
    Try adding some aleve or motrin, to your daily intake for now- you might be surprised by how much relief you may get from it- especially over the next few days..
    I know when I have tapered previously, it was always easier to handle the large reductions, even at one time than it waw toward the end when even the smallest reduction was a larger percentage of my daily intake overall....for example, last time I tapered off oxycontin/oxycodone- I was at 160 mg total a day- I was cutting my doses down by 30 mg or so every few days- I barely noticed the reduction in dose, until I got down to 30 mg a day total intake- then reducing had to be slowed a bit because a 10 mg reduction was one third of my total daily dose, and my body didn't quite like to go that fast...
  • Hi sandi,

    I am taking Meloxicam 7.5mg twice a day for quite a while. He's also given me Clonidine twice a day for blood pressure and withdrawals. Plus still taking Gabapentin 1,200mg, 3 times a day as well as Methocarbamol 1,000mg, 3 times a day. I don't notice any changes when I take the Meloxicam or the Methocarbamol., unfortunately. He has also prescribed Baclofen for withdrawals, but was unable to drive to the pharmacy today to pick it up.

    I have the option of attending the VA's Chronic Pain Rehab Progeam. It's an inpatient program that last for 3 weeks. In the first two weeks they wean you off opioids. I believe they may reinstate them if needed. They also provide pool therapy, physical therapy, training, ect. during the day.

    I'm the type of person that is extremely uncomfortable around other people. I'm not very trusting. I turned down the program, because I thought I could do this alone. I don't know if I should just give in and attend it. My problem now is that I'm scared and don't know what to expect.

    The thing that scares me about the VA is that they are so inflexible. They dictate medicine. It's not like you can drop the doctor and find another. They all have to follow government directives. They all have access to the same records. They don't have to be nice to patients, in order for you to want to come back. They get paid a salary, which my doctor has said is very low, and will get the same salary if I am there or not. I'm not saying they aren't pleasant.
  • sandisandi Posts: 6,302
    edited 01/19/2013 - 2:30 PM
    Hi Scott,
    Most pharmacies have a pick up and drop off service. Try callling them and asking them if they can pick up the script for the baclofen and then drop it back off for you.
    Withdrawal is kind of like a bad case of the flu....and you won't die, despite the rumors that love to spring up about how terrible it is. I'm not saying that is a walk in the park, but as I said before, the stomach issues if you have them can be managed by an over the counter, anti diarreheal- and that particular medication also contains a relative to pain meds so it helps manage the withdrawal symptoms. The clonodine that you were given is to manage the symptoms of withdrawal and helps immensely...make sure that you keep hydrated, that is important, especially if you get diarrehea- gatorade does wonders for keeping your electrolites in balance...the rest of the meds should help keep you comfortable so that the muscvle spasms should be at a minimum especially with the addition of baclofen....
    As for whether to try the VA program, you can always give it a try, but I would want to make sure that if you complete it, that it doesn't happer your ability to get opiates in the future...
    Honestly, you can do the Chronic Pain program, it can't hurt and you might learn some other methods to help reduce the pain levels, and that is always a good thing. Every little bit helps when it comes to managing chronic pain, even small decreases in pain levels all add up.
    Why can't you change your doctor? It was always my understanding that using your advocate, if you weren't getting the treatment you needed, then you could request and get a physician changed .
    The best PM doctor that I ever had is with the VA system now in Puerto Rico.......he was awesome and I wish that he was still here..I know that there are good physiatrist's and PM doctors in the VA, but just like the civilian system, sometimes, we all have to kiss a few frogs to find the prince in them....or in your case princess.
  • Hi Sandi,

    I had to wait 3 months just to get into PM at the VA. I felt so lucky I did, because I didn't have to pay COBRA anymore. I only get to go every other month. I was told that there is a shortage of doctors for the amount of patients. Since I go to the VA hospital, all my doctors are in one place and they know each other. I'm afraid that if I can manage to switch, I might get the same. My PM doctor is nice, but it's like he and his substitutes are just following a program. I always get the same story that the VA used to prescribe lots of opioids to veterans, but then they started getting many reports of them dying. They found that they were dying from the opioids. So now they don't like to use them, unless the vet is dying of cancer.

    The prescription of Baclofen was ready at the VA Pharmacy today. The pharmacy is near the VA hospital, which is a 12 mile drive through lots of traffic. I was in such bad shape, I didn't even want to ride with a friend taking me.

    If I had just Flu like symptoms, I can deal with it. It's the nerve pain in my neck and lower back that is so intense. My neck feels like it's on fire inside. Sitting or bending my back is extremely painful. It's like the nerves are screaming in those areas. I'm afraid that it will stay that way. The source of my pain has not been eliminated. A long time ago, my PM doctor wasn't sure cutting off the opioids would work. Depression doesn't help me either.

    When a disc or bone presses on the spinal cord, it doesn't cause pain, does it? Doesn't the pain come from pressure on the peripheral nerve that go to arms, legs, etc.?

    I really appreciate you giving advice and help.
  • sandisandi Posts: 6,302
    edited 01/19/2013 - 6:49 PM
    Hi Scott,
    Yes, bending your neck can cause pain in the spinal cord. The cord is made up of different areas that do different things-transmit signals to move muscles and joints, send pain signals up and down the spinal cord and due to bone spurs, or compression of the nerves, and nerve roots ( nerve roots are the areas where the peripheral nerves leave the spinal cord tract and innervate different areas of your body- in the cervical area, arms, shoulders, fingers, underarms, chest wall- etc . If you do a search on dermatomes, you can see where each set of nerve roots innervate each area of the body..this might help pinpoint where the pain is coming from and make it so that you can narrow down where the pain is coming from..
    Have you ever tried Lyrica? If the gabapentin isn't working, lyrica or cymbalta may be a better option for you...but again, it is one of those types of medications that needs to be titrated up and down to find an effective dose.
    I hope that once your body adjusts to the no meds thing, then your body will adapt to help lessen the pain. If not, then you may be left with no option but to insist on yet another MRI and CT scan to see what if anything has changed and to check the status of the compression of the cord in both the lumbar but more importantly the cervical area and then go back to pain management and simply tell them that you can not function this way..
    I still think that the thing that you really need to do is be seen by a board certified fellowship trained ortho and neurosurgeon to see what they think is your best option. One of the big problems with postponing surgery is that the longer those spinal nerves are left compressed, the more damage can become permanent...and you don't want that. Especially if the likelihood of less pain and a resolution to the problem is offered.
    I wish that I could do more...I hate seeing someone suffer.
    Been there and done that too many times in my life. Try to get some sleep Scott...
    Sandi
  • shintysshinty Posts: 26
    edited 01/20/2013 - 5:31 AM
    I find it interesting that the doctors want you off of all narcotics, but then are willing and able to prescribe a whole host of other medications to take their place. My philosophy is simple-if it isn't broken then don't fix it. Doctors are being pressured to stop prescribing narcotics for chronic pain patients. It's funny that it's still acceptable to write a prescription for a weeks worth or so of Percocet to a patient that has "thrown their back out". As long as that patient recovers, then fine. If the pain becomes chronic (not going away), the patient must then stop taking what is probably working well, and switch to non- opiate medications for his now long term pain condition. I still think one or two opiates is better than the multitude of drugs one could be prescribed if only non-narcotics were the only choice. I personally am on a narcotic regimen and always will be. My primary care doctor writes my prescriptions monthly, based on the pain specialists advice that I also see on a regular (monthly basis). this actually works out good for me with the all to common problems with prescriptions that pop-up. Either doctor can and will write the prescriptions if the other is not available, sick, died, -anything! If you think opiates work for you but your doctor won't prescribe them to you simply because "they are not prescibing narcotics" anymore, then maybe it's time to find a doctor that's not limiting him/herself when it comes to their care of the patient. It's a doctors job-TAKE CARE OF THE PATIENT IN THE BEST WAY AVAILABLE. Narcotics sometimes are the best way. Operating rooms aren't reverting back to biting on leather and offering shots of brandy yet are they?
  • These are the meds I am prescribed. I pay $8 per prescription per month. I average about $100 per month.

    For pain:

    BACLOFEN 10MG TAB for withdrawals
    OMEPRAZOLE 20MG EC CAP (Prilosec) because of taking Meloxicam. 2 capsules twice daily
    CLONIDINE HCL 0.1MG TAB twice daily for withdrawals
    ACETAMINOPHEN 325MG TAB 2 tablets 3 times daily
    CAPSAICIN 0.075% CREAM apply 3 times daily
    LIDOCAINE 5% OINT apply 3 times daily
    MELOXICAM 7.5MG TAB 2 times daily
    GABAPENTIN 400MG CAP 3 capsules 3 times daily
    METHOCARBAMOL 500MG TAB 2 tablets 3 times daily
    VITAMIN D 400 UNT TAB 2 tablets 3 times daily

    Depression/anxiety

    TEMAZEPAM 15MG CAP 1 capsule at bedtime
    BUSPIRONE HCL 10MG TAB (Buspar) 1.5 tablets daily
    BUPROPION HCL 150MG 12HR SA TAB 2 tablets 2 times daily
    SERTRALINE HCL 100MG TAB 2 tablets once daily

    Blood Pressure:

    HYDROCHLOROTHIAZIDE 25MG TAB 1 tablet daily

    Cholesterol:

    SIMVASTATIN 40MG TAB 1 tablet daily

    I'm sorry to say, I broke down and took a Morphine SR 15mg for pain. I couldn't take it any longer. I see my doctor Wednesday. I can tell you that this event has turned my life upside down. I have so much fear and anxiety. I just can't understand how Meloxicam and Acetaminophen can have the efficacy as Morphine and Oxycodone.




  • Scott, I'm very sorry to hear you're having so much trouble getting proper relief. Can you find another pain management doctor? Opioids are an essential part of chronic pain treatment, and are perfectly safe if prescribed responsibly and taken responsibly. The evidence clearly shows that the number of chronic pain patients who develop addiction problems is low (10% or less). My own view is that unless there is a clear problem of this sort, or the side effects are becoming unmanageable, there is no reason not to use them, providing they are indicated for the patient's type of pain and are clearly showing benefit in analgesia and improved function and quality of life.

    I realize that there are sensationalist stories going around about people dying due to opioid abuse, and that's all very sad, but it shouldn't influence a doctor when it comes to treating ongoing pain. Unfortunately, there seems to be a backwards swing in views toward opioid therapy, thanks to the media and the rise in abuse. Unfortunately, the stigma against opioids persists even within the medical community. There is a great need for education as to the myths surrounding their use

    For most patients, no amount of acetaminophen or NSAIDs will work as well as opioids, and both can be just as dangerous to patients if misused. NSAIDs carry the risk of significant gastrointestinal damage and there is also the potential for dangerous cardiac effects. .Acetaminophen causes liver toxicity in high doses and can quite easily lead to serious problems if too much is taken. Having said that, NSAIDs work well for certain types of pain, and many do benefit from them.

    Obviously, not every patient with pain needs opioid drugs, but they should not be dismissed out of hand just because other people are not using them responsibly. Many patients do very well on them, as part of an overall treatment program, of course. Many of us here have found that a mixture of approaches works best to help relieve pain and help us function better. This can include medication (opioids, anticonvulsants, antidepressants, muscle relaxants, NSAIDs, etc.), electric stimulation (i.e. TENS), physiotherapy, heat, aqua therapy, and things like acupuncture. Exercise of some kind is essential, if you're up to it. Not everything works for every patient, and it can take a while to find the right blend for you. It certainly helps though, if you can find a doctor you feel good about, one who is willing to listen to you and work with you to try to improve your situation.



    I hope you get better treatment soon.

  • ScottMSScottM Posts: 54
    edited 01/21/2013 - 3:23 AM
    I don't have a job or health insurance. I've been living off my savings for quite some time. I have applied for SSDI and am waiting for my hearing. The care I get from the VA is of no cost to me other than prescriptions. I would love to be able to go back to my old pain management doctor, but I'm afraid the cost would be very high and I would have to pay for the meds myself. I have to be very economical with the money I have to make it last.
  • The original post was simply that opiates were working fine , and then suddenly not available anymore. If it aint broke, don't fix it! I would go find a pain specialist or another physician that is willing to help me, even with only opiates. Oh no, he is on opiates, lock up your daughters, lock up your wife, run for your life! I agree there is alot of diversion, misuse, abuse, overdose, etc., etc., but where does that leave the chronic pain patient that's truly in pain, and follows all the rules?
  • I understand your frustration. I have not been put on opiates either, because they have not confirmed exactly what my pain generator is yet (though they are getting close) and so as a result my current PM doctor has said that opiates are not allowed and my primary care also doesn't feel comfortable prescribing them. But I can be given this pharmacy of drugs and still be in pain most of the day?

    I am on tramadol 50mg 8x, meloxicam 15mg 1x, cymbalta 60mg 2x, soma 350mg 4x, topamax 100mg 2x, and xanax 0.5mg to sleep. I have topical Lidoderm patches and a tens unit. I've tried regular PT and was also went from manageable pain to severe pain after just a couple aqua PT appointments. I'm also on hydrochlorothiazide to control high blood pressure.

    I have been spoken to rudely several times by PM doctors when complaining about my pain without even asking for any specific medications. I simply say that what I am taking is not working, and that my pain is out of control.. Then I get spoken down to and told that I can't have narcotics because my cervical MRI doesn't indicate a reason. Not the exact same situation as you but I can understand how hard it is to be in this pain and not be treated like a human being who needs relief despite what it's source may be.

    I really hope that you can get through this and come out better on. I agree with those who say that maybe you should consider surgery after all. With severe nerve compression on the C6-7 level you don't want to continue damaging that any further...I'd see a surgeon for their opinion if I were in your shoes.
    Microlaminectomy and discectomy at C7-T1 on April 26th.
  • dilaurodilauro ConnecticutPosts: 10,045
    edited 01/21/2013 - 1:08 PM
    what I do still find missing.... Is the connection between your existing condition and the amount of narcotics, or as you stated Opioids that you still need.
    There is always a doctor to patient connection in terms of what is needed and what is not.

    Pain is very subjective. What is someone's 10 is another person's 2 I do not have a crystal ball so that I can really see what your pain level is, but I do understand the medical field and what they are willing to prescribe.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • ScottMSScottM Posts: 54
    edited 01/21/2013 - 3:03 PM
    Besides your MRI, have they considered a CT Myelogram? I understand they show some additional detail that the MRI doesn't show.

    Back in 2006, I tried Tramadol, but it was useless. I still have a big bottle of it. Not until I was put on Vicodin 7.5mg did I start doing better. But eventually came Vicodin 10mg, Percocet 10mg, Kadian 20mg, 30mg, 50mg, Oxycodone 15mg, 30mg. I remember standing behind a woman at checkout. She had a prescription for Oxycodone 80mg. I couldn't imagine taking that much Oxycodone at one time. I left them taking Kadian 50mg x2 and Oxycodone 30mg x 4. That's when my insurance ran out.

    When the VA converted most of the 30mg Oxycodone to Morphine SR making it 75mg, I did better than when I had less Morphine and more Oxycodone from my old PM. I think the sustained release was better than getting large jolts of Oxycodone. It's too bad that their plan was to slowly take it away. Each time I had an appointment, I would hope they would change their mind. It really frustrates me how one person has so much control over my life. I have one last hope on Wednesday when I see my PM doctor to see if he will change his mind, especially since his alternative med plan does not work.

    Talk about rude... One morning, I had to have a blood test and urine test before being interviewed for the Chronic Rehab Program. I get a call from my PCP's office saying my potassium level was dangerously low. I had to wait a while and get my blood rechecked. After that I had to meet with my PCP. When I see him, he says he's going to be blunt. He asked me if I had tried to dilute my urine to cheat the urine test by taking extra hydrochlorothiazide. I was dumbstruck. I had no need to cheat on the urine test and I didn't know how to dilute my urine. But he figured that's why my potassium level was so low. I told him that I didn't dilute my urine. Then he turns and asks me how long I've been an addict. I couldn't believe it. He told me that he had a lot of spine problems and had been addicted to prescription pain killers in his past. He decided to go cold-turkey and now he feels so much better as a 75 year old and has no need for narcotics.

    I know that I've probably already did damage to my body by avoiding surgery. I have hyperreflexia, most noticeably in my knees. I don't know how serious it is as no one at the VA is concerned. Without going into a lot of details, emotionally, I can't deal with surgery at this time. I'm trying to work with a psychologist, but with the VA, I can only be seen once a month for an hour. I bet if I did agree to surgery, it would take 3 months before I could see a surgeon. Then another 3 months to have surgery. It's usually a 3 month wait for everything.
  • ScottMSScottM Posts: 54
    edited 01/21/2013 - 5:56 PM
    dilauro said:
    what I do still find missing.... Is the connection between your existing condition and the amount of narcotics, or as you stated Opioids that you still need.
    There is always a doctor to patient connection in terms of what is needed and what is not.

    Pain is very subjective. What is someone's 10 is another person's 2 I do not have a crystal ball so that I can really see what your pain level is, but I do understand the medical field and what they are willing to prescribe.
    I couldn't tell you honestly what my PM thinks about my pain. I hope he understands. I've probably seen him 4 times in the past year. A substitute twice and another one time. One time I didn't see him for 6 months. I've only been going to the VA PM for a year. I had seen an intern in the Mental Health Clinic each week during the summer and fall and I would tell her that I feel like I have no connection with my doctor. Unlike the one I had before the VA.

    I know you are thinking that my doctor has evaluated me and believes I don't need any opioids. That maybe I'm exaggerating my pain level to get some drugs. I wish there was a way to measure pain with an instrument. But even at that the pain can vary. At least then there would be no question. I can only report what I think I feel. Back in December at my last PM appointment I reported a pain level of 6. Now when I stop taking the narcotics, it's around 8, maybe 9. Maybe in time it would decrease some. I'm concerned and worried because I'm the one that will have to live with the pain, no one else. He wasn't originally going to stop at zero. It wasn't until he discovered I'm depressed and then later have mild central sleep apnea. That's what he told me. No one showed me the sleep study, I had to push to get a copy of the report. No one explained what things meant on it. There was a recommendation to try PAP therapy with Auto PAP, which I imagine is a take home device. No one followed through. I do plan to bring the report when I see him Wednesday.

    The VA system is much different than on the outside.

    I'm extremely introverted, don't usually assert myself or express my feelings well. Sort of stoic. I don't like being that way as I usually end up on the bottom or misunderstood.

  • My sister went through the VA chronic pain rehab program, she has fibro, so can't equate to what you are going through, but she loves the program, and it has helped her.
    My father on the other hand, who also goes to the VA, basically gets what ever pain meds he says he needs. realizing that he is older and his back surgeries were done (4 level lumbar fusion being the worst) in the 70's, talk about outdated procedures....
    I could very well come down to which VA facility you are going to, they don't all operate the same even though they have the same instructions and procedures.
    Next time your VA doc says they don't make much, ask him the value of not having to pay malpractice insurance and all the other benefits he gets for working for a federal agency. If you want to know what they get paid you can look it up on USAjob dot gov and search on the VA. They get paid ok.
    Hope you get some help, don't be afraid to speak up and I would recommend doing the chronic pain rehab program, can't be any worse then what your going through now...
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • ScottMSScottM Posts: 54
    edited 01/22/2013 - 11:49 AM
    I'm glad you were able to comment positively on the chronic pain rehab program. I spoke to one of the therapists today and was told I can start any Monday, even this coming Monday. I'm trying to convince myself.

    Do you know anything about VA surgeons? Are they good?
  • jmhar68jjmhar68 Posts: 60
    edited 01/22/2013 - 4:14 PM
    Scott, I was treated so horribly at the pain management clinic I went to I decided to never go to one again. Fortunately, my primary care doctor who I have been seeing since I was a kid is managing my pain. He genuinely cares and has stated that even with the new media hyped opiate scare there are clearly documented rules supported by the DEA that allow opiates to be prescribed in a responsible manner that do not jeopardize the patient nor the physicians license. It seems to me you need to find a Physician who simply cares. I think it really is that simple.
  • Is 30mg of Morphine SR x 3 considered high, low or medium dosage? When I dropped to 15mg's, I could function, but was miserable. Several times now, I've taken 2 15mg's on one day and try to take nothing the next. But the pain wakes me up in the morning, where I can't go back sleep. As the day progresses the pain gets to the level where I don't think I would live long like that. It's hardly bearable. Then the stress and anxiety makes the situation worse and contributes to my depression.

    I see my PM tomorrow and will be so nervous. I hope that I can express myself correctly. My doctor is a nice guy, but he dictates rather than listens to me and consequently, I sometimes feel like it's a waste of time to say much. Then when he tells me that everyone over 50 has some pain or no one has died of pain, I feel like what I say doesn't matter. When I tried pool therapy and it actually made my pain much worse, he didn't even comment when I told him. It got the feeling that to him I either do it or don't, take it or leave it. I thought he would want to figure out why it might have increased my pain as it did. He gets me authorized for 3 ESI's at a time, good for a quarter and then never asks how they did. I don't think he keeps track of them. Being a loner, it's often difficult for me to find a ride to the facility the VA has outsourced to.

    I'm pretty good at withstanding and putting up with pain. I clean my house and it hurts and makes the pain worse later, but I have the mindset it has to get done. One VA doctor I saw for PM told me I needed to get a maid. If I had her salary, I might. I was always a do or die type of person. I have a large yard on a pond. I used to mow the lawn in the summer sun, when the temperature was in the mid 90's and the humidity was 63%. I would mow until I started feeling dizzy and near passing out, stop for a minute or two and get back to it until it was done. Now I wouldn't mow the lawn at all. I used to be a workaholic.

    My old PM clinic was much more compassionate and flexible. Within reason, why would they want to see their patients needlessly suffer. They have a staff of PM doctors. In the years I went there, I was switched around to different doctors, some better than others. The last one I had there wouldn't even fill out a form for me, but the one I had before him filled out all sorts of paperwork so I could have the work accommodation to work from home. Had I kept my health insurance, I would have stayed with them. My last doctor there had been a former VA doctor.
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