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PostPosted: Fri Jul 05, 2013 5:15 pm 
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Hello again everyone. I want to thank those who have replied to previous posts and thought it would be best to a single update in a new thread. This has been a roller-coaster for me.

As you know, I started the Sub on Saturday morning at 24mg per day. I reduced that on Monday to 16mg and then to 12mg on Tuesday, and Tuesday was my second appointment with the new pain management physician. The Suboxone hasn't done anything for the pain, but it did at least quell what would have been horrid WDs.

So the doctor came into the room and said he received my records, MRIs and CTs. He said though an "extreme injustice" (his words) was done with allowing me to reach the 180mg Oxycodone per day that I was at, he feels that I absolutely do need to be on narcotic pain medication after reviewing the images.

I thought you have GOT to be kidding me! All THIS just to come back around to this!? He told me to immediately stop the Suboxone and then prescribed 10/325 Hydrocodone four times daily (40mg per day). He said the next couple of days would be "rough." Well, they actually haven't been horrible. I have not had any WDs from the Oxycodone and only minimally thus far from the Sub and that's practically gone now (I was only on it four days - granted though a high dose). I was confused. I said wait a minute, right now I've got this Suboxone in me and it will stay there for two or three more days at least, but you want mt to start the Hydrocodone today?

Perhaps I can credit it with continuing to stop whatever WDs were left, but it sure as all hell isn't doing a damn thing for the pain. My tolerance just didn't magically reduce THAT much in a week! HOWEVER, I will say this - it did reduce some.

So now I'm stuck in this strange limbo - I'm on a medication now that does nothing for the pain. His primary concern appears to have been to simply get me off the Oxycodone, and I suppose I should credit him with doing that. But even typing this right now is an effort. Everything is just on hold right now and I don't know what to do. When I went to him I told him I wanted to continue the taper I had already started (I WAS on 360mg a day and took that down myself to the 180mg it was at before going to him), and he took me down this road.

The prevailing attitude now is that it's just better to hurt and suffer than to be on any opiate. That's sad but true. I just don't know how much more of this I can take. I'm tired, just truly and honestly tired. Every single day has been a stronger "I just can't do this anymore" than the one before, and it's growing weary.


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PostPosted: Fri Jul 05, 2013 9:21 pm 
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Wow. This is just my opinion, but your doctor seems completely whacked out. You went from 180mg oxy pretty much straight to the 24mg of sub. You really didn't even have much withdrawal in between. Sub is really strong. You were only on it for a few days, so your tolerance probably didn't have time to really go up, but it surely didn't go down. To go from what you were taking to 40mg of hydro seems like a pretty drastic drop to me. I really can't understand what your doctor was thinking. It's not surprising at all that it's not helping with your pain, and to be honest I'm surprised you're not feeling withdrawal symptoms. There's probably still sub left in your system. You would have been better off continuing your original taper or sticking with the sub for a bit and tapering off that as quickly as possible. If you could have gotten down to a really low dose of that and stabilized and THEN tried the hydro, that seems like it would have worked better. If you continue to feel as badly as you do, I would look for another doctor. This one seems like he doesn't get how sub works. There's no reason for you to be in that much pain. That's just not right. I would look into getting other opinions. I hate for you to feel so hopeless. It shouldn't have to be that way.


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PostPosted: Fri Jul 05, 2013 10:56 pm 
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Thanks for your reply Kitty.

It's been a bad couple of months. Mom passed away last month, and we were extremely close (I was the youngest of four - typical baby of the family "Momma's boy"). I've been having a tough time with that. At the same time, my previous pain management doctor went *poof* and I had to get to another quickly. I had already been on a taper and had cut from the 360mg to 180mg like I said. I knew I could go lower but the WDs were putting up a roadblock. It's a VERY touchy thing - you have to make sure that you are differentiating between "this is WD" and "okay this is pain." At the 10mg 4x daily Hydro, the pain just isn't being touched really. I did experiment a tad (hey, hurt like I do all day every day and judge me then) and took 15mg Hydro a couple of times. The pain was still unrelenting, but I could feel the edges coming off just a bit. Having the experience I do with Oxy (and checking the conversion charts), I really think 15mg Oxy doses for 90mg total per day would deal with the pain and keep it at a tolerable (though not absent) level. That is ANOTHER half-cut from the half I already did on my own.

When I went to this new doctor, I did indicate that I felt I could taper more but needed help with it. I was also clear that the pain needed to remain addressed. I just didn't know much about Sub when he prescribed it and went with it. It didn't touch the pain a bit. When I went back, he did this. At no time did I say that I wanted this or that medicine. I didn't even ask to stay on the Oxy. I just asked to help me reduce my intake and still address the pain.

Is this the behavior of an addict? Really? Cutting a dose in half and then in half yet again? Not asking for any specific medication? I have been very careful to try to do everything right and to do my part to help myself. I'm sorry, but I believe - truly believe - that I have done MORE than my part to prove that I simply want some relief from the pain. But the environment that has been created by politicians wanting to look good for fighting the "drug war" and the by the DEA instilling unmitigated fear into the hearts of physicians has created a growing number of patients in legitimate pain who now suffer needlessly day in and day out. Yes, I am one of them. Also yes, I have developed a physical dependency on the medication, and I will even admit that my doses were taken much to high. My previous two physicians both kept stressing the difference between "addiction" and "dependence" and I just went along. Granted, I'm an adult and should have done my research and said maybe we should try other things, but I can't change that. I did on my own get into aquatic therapy, massage, mild yoga and meditation as well as vitamins and supplements that helped me on that first reduction.

But now this doctor has taken me unreasonably in the opposite direction. Not only that, he did it in an unorthodox manner from the research I've been doing. Suboxone is indicated for the treatment of opiate addiction and dependence. Though some use it off-label for the treatment of pain, it is NOT indicated or approved for that purpose. Then he stops the Suboxone, saying I actually do need to be on opiate pain medication, and returns me to it but at a dose DRASTICALLY lower than what I had been on when I came to him.

My next appointment with him is the week after next, and I don't know what I'm going to do. I have 20 of the 8mg Sub strips left, and I swear if I have to take 20mg of Hyrdro a few times a day (screw it, if the acetaminophen does me in at least it will do it without the pain) and then use the Sub for a couple of days at low doses to prevent WDs then I guess I will. Then when I go back I think I'm going to unload on him with both barrels (figuratively speaking of course) and ask him if he would like to now begin to effectively address the pain at what I believe are now effectively lowered doses or if he would like me to contact an attorney so that we can formally talk about this interesting drive we've taken. I know, I shouldn't use the Sub like that, but folks I'm just at my wits end here. I need sleep - real sleep, not just an hour here and there when my body just passes out even with the pain because I'm beyond tired.

Oh, and to top it off, after reviewing my records and MRIs/CTs, he said what the previous doctor said - that I am definitely looking at least at two more surgeries to restabilize the cervical fusion and to add a lumbar fusion due to the failure of the initial surgery on that. Oh, okay Doc, so you knew I would need that and put me on a medication that would require special considerations in that event, and then took off THAT medication only to put me on ineffective doses of a weaker one than the one I was on to begin with - thanks PRICK. Sorry, that's just how I feel.

Tired - SO TIRED - of the constant hammer in my back, claw digging into my neck and left shoulder, and lightning bolts running down my legs and into my feet over and over and over and OVER again.


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PostPosted: Sat Jul 06, 2013 7:57 am 
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One thing I do know is that the mind is a powerful thing. You want something to work so bad, like the Suboxone, that you will say and think anything you can - and that might work, but as I've discovered it will only do so briefly. The reality of things will not magically disappear and you have to deal with them whether you want to or not. When I started and took it for those four days, I kept telling myself, "This is working - there's no pain, you're not hurting" over and over, and I'm telling you I think to some degree that actually worked. But of course you can't live your life doing that, and it will bust through as if to say, "Nice try."

The strange thing is that I am angry with this doctor but also thankful. The fact is that the effective dosage to relieve the pain is lowered much more quickly than it would have been on my taper. However, now I know what I think the rock bottom therapeutic dosage is, but he is so heavily stuck I think on "no opiates at all costs" that I'm going to have to either drum into him that I've "followed the rules" and can't do anymore to satisfy that concern or find a new doctor. I think the latter will be the case. I checked him a bit more online, and he did some of his training at Baylor. Their program tends to focus on the "suffering builds character" concept, which is the most ridiculous thing in the world.


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PostPosted: Sat Jul 06, 2013 9:16 am 
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oh snap, i am sry your going through this! 40mg of hydro coming from 180 oxy, thats just inhumane!!

I dont blame ya onr bit for taking a lil extra of the hydro to try and relieve your pain. If you end up needing you sub try taking it in small doses, but more often. Pain management is an off-label use of sub, but regular old buprenorphine has been used for over 30 years in a smaller more often dosing manner to relieve pain. Maybe you find it effective for the time being until you can have a chat with your doc or get a new one.

What ever happened with the PM doc that you and your sis talked with? Maybe im remembering wrong, but wasnt he going to try and squeeze you in as a patient.


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PostPosted: Sat Jul 06, 2013 11:21 am 
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You know, I'm going to be completely honest with him as I always have been with all doctors. I will tell him that I had to take a larger dose to deal with the pain. Now, he could very well say, "Well you didn't take it as prescribed, so I can't help you." Then I'll say, "Okay doctor, who exactly then do I contact about YOU prescribing a medication for a purpose for which it is not approved? I assume it's okay for you to bend the rules but not me then, is that correct? Not only that, you bounce me from that unapproved usage back to a narcotic at a ridiculously low dosage compared to my previous dose."

Too many chronic pain patients are scared to cause a ripple lest they be "fired" for any given reason and end up in trouble with both their pain and the WDs from the physical dependency that is a consequence of extended use of this medication, which only exacerbates the pain even more.

I'm sick of being scared like that - as though someone else holds the key to whether you can function or not (not "as though" - they DO). We don't expect to be pain free. It is drilled into us that we need to find some way to accept that we will simply have to live with some tolerable level of pain. I can even accept that.

I don't wish bad things on anyone, I really don't. But I would gladly break that rule for someone on a state medical board or a family member of theirs to come down with something that is results in persistent, unrelenting chronic pain that requires this medication to alleviate. They will undoubtedly have to "titrate" upward to some degree (though there IS a limit and one CAN be held stable at a certain dosage that is adequate while seeking other avenues of relief - I know, I did it). And then THEY will run headlong into these huge walls they have placed in the way of patients and pain relief. You literally have to nearly have cancer in order to find compassionate relief. Oh, you're dying? Well okay, we'll do whatever you need. Oh, you're not dying but hurting a lot anyway? Well we're sorry, deal with it.

If I can get this pain under adequate control, I'm seriously considering starting a Houston-area pain-patient advocacy organization. Not one that has meetings here and there and says, "Hey, we're talking." A real intercessor that doesn't care about that but will, if necessary, accompany patients to their doctors' appointments and be the mouthpiece that they are too afraid to be. I've thought about this for a long time now but let that same fear drown it out. I'm not saying I'm going to do it, but I am going to give it more serious consideration.


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PostPosted: Sat Jul 06, 2013 2:10 pm 
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I totally agree with you about how the whole pain management system works. That was the main cause of all my problems. Ever since I first injured my back, the only thing that really helped was medication. And I tried pretty much everything else. My problem, from the beginning, was that the medication got rid of my pain, but only for a few hours. In the beginning, when the pain wasn't as bad, that was tolerable. I could deal with hurting in between doses. But as the pain got worse, I couldn't. I saw 3 pain management doctors over 5 and a half years. And all of them insisted that four pills a day was the limit. Didn't matter if it was four 5mg hydro or four 15mg oxy. No more than four. But they didn't last six hours for me. Whenever I tried explaining that, the only thing they would do, is increase the strength, not the amount per day. I tried cutting them, but the pills were so small, they'd usually crumble, even with a pill cutter. So I would take enough to stay out of pain, and end up very short every month. After going through withdrawal so many times I finally got to a point that I couldn't do it anymore. So I went to a second doctor and got another script. I did that for a year and a half. To me, the dose was perfect. I didn't need to increase and I wasn't in pain. But I had to sneak around and lie, which I hated. And I'll admit, there were days that I took pills, just to take them. I didn't get high from them, but I did feel a bit of extra energy. I did it because I wanted to prevent the pain, but I see now there may have been some addiction involved. I could have taken less on my days off from work and been ok. Well, finally I got caught doing this, and my primary doctor dismissed me from his practice. I had no choice but to go to a sub doctor and try that. And the sub does get rid of my pain better than the pills did, and I went from dosing 8 times a day to 3 times. But I feel so tired all the time from the sub. And I'm scared to death that I may need to have an emergency surgery done, and I'll be screwed with how high my tolerance has become. I know that I didn't go about things the right way, what I did was wrong. I just feel that if my pain management doctors would have listened to me more and not been so scared to go over the 4 limit, even of a lower strength, I wouldn't be in this mess. After 5 and a half years I really don't think 120mg was that crazy of an amount. I know I'm rambling, my point is just that I agree that things need to change, and that legitimate pain patients should't be scared to tell their doctors that their pain is not being managed. And if we do something to make sure our pain is being covered, that shouldn't automatically make us addicts, or make us feel like we are. My obsession with pills came from being scared that I would run out and have to suffer through pain and withdrawals. I try to be positive and grateful that I'm not in pain much anymore, but I'm still pretty bitter about how things worked out for me.


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PostPosted: Sat Jul 06, 2013 3:28 pm 
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This is one topic that I find sorely lacking online - those who are forced to Suboxone (or Methadone) because they are no longer able to receive adequate pain control. For some, the Suboxone helps the pain. For others, it doesn't and they are instead forced to Methadone that does, but it comes with its own host of problems. In EITHER case, we gain even more the stigma of "drug addicts" instead of simply chronic pain patients who have of consequence also developed a physical dependence. And the "traits" of addicts, as listed, are horribly skewed. For example, what you did (going to two doctors) is "doctor-shopping," and you would instantly be branded addicted and fired (as you were) instead of them stepping back and saying, "Hey, wait, yes what she's doing is wrong, but what are WE not doing RIGHT that has driven her to this?" If after trying to correct the issue you are found to still be doing such things, then okay, we probably have a problem. But there isn't even ONE chance to try and see if the problem isn't being adequately addressed. In your case it wasn't, and you still paid the price. Overtaking medication is also listed, but that could very well likewise signal a different issue. The dumbest one is that they say addicts are constantly worried about running out and counting their pills, nearly obsessed. Yes, this is true. But it is ALSO true of those who take it for chronic pain. I've counted my pills NUMEROUS times to make sure I was taking it correctly, it was all there, etc. And yes, we ARE afraid of losing them (I've done this ONCE in 10 years by the way (2 years ago, 8 years of taking them - ONCE - and was still made to suffer until appointment time in spite of that record).

Instead of using deductive reasoning and taking all of those things into the larger picture, they convict a patient on just one "trait" appearing. If you constantly "lose" your medicine or it is "stolen" often, constantly running out early even after adjustment, etc., then take the totality of the circumstances into account and you're probably dealing with a different problem. But if you lose it once (or maybe twice) over a long period, well, your human and things happen. If you run out early once or twice, then maybe another adjustment is necessary or another type of treatment. You get the idea.

The pain doctor I told you about could have taken me, but I was removed from the Suboxone and restarted on this and he doesn't want to get into prescribing these things even for friends of his friends. I completely understand that and would never expect him to put his license on the line like that. However, I do have another option. 20g of the Hydro (two of the 10/325 pills) DOES at least take enough of the edge off of the pain to allow me to somewhat function and concentrate. 20mg of Oxy (which would be yet ANOTHER huge drop from what I was at) would get me back to hurting but much more operational, but something tells me this new doctor just isn't going to do it.

A very friend of mine is a retired neurologist who still has his Schedule III (Hydrocodone) registration but no longer Schedule II (Oxycodone). He has written one prescription for me in the past ten years, about 6 years ago, for a perfectly legitimate reason and with the permission of the other doctor, but never any other than that one. He is a very good friend of mine, and he has watched me go through this with disgust. He has often wondered what has become of some patients he had to refer to pain management as a result. In any case, the maximum acetaminophen recommended dosage in a 24-hour period is 4000mg. Granted, long-term usage like this wouldn't be recommended, but short-term would be okay. He is willing to write for the 10/325 Hydrocodone for doses of 2 each at 5 times a day, which would be 3250mg acetaminophen daily and within that limit. He will do that while I have time to locate a pain doctor with a brain and at least an ounce or two of compassion. He was absolutely stunned that this doctor tossed me on Suboxone at 24mg per day and then right back off in the same week and back to an extraordinarily lower dose of a weaker medication than I was on, telling me that really borders on malpractice. Of course, him prescribing this for me even only briefly while I find another would also be unethical, but I may just have to do what I have to do. I did NOT ask him to do this, he brought it up to me last night. He said he's not keen on it, but it's not right that I should have to just be in misery like this when I have done everything right and by the book seeking relief for this pain.

80-90mg of Oxycodone daily would be roughly equal to (just a tad more than) that 100mg Hydrocodone, yet ANOTHER half drop from the initial half-drop I've had already done on my own before going to the new doctor. That's why I do give the Suboxone some credit. It DID reduce my tolerance a bit while also dealing with the WDs, though it did nothing for the pain. Perhaps there is a use for it in that regard? Who knows.

Point being I've done my part and then some, and I'm not asking for much here - just the ability to have only tolerable pain while still being able to function and be somewhat productive.


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PostPosted: Sat Jul 06, 2013 4:56 pm 
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Snap, I admit that I didn't read everything you wrote, but I wanted to address a couple of things.

First, please accept my condolences on the loss of your mom. I know how hard it is. My mom died overnight when I was 31. It was devastating and it was one of the factors that started me down the path toward addiction. It was so hard to imagine the future without her. I could feel it in my face. It felt like all the muscles used for smiling withered away. I was often sick in the months after her death, culminating in getting Bell's Palsy.

Please take care of yourself. Please be kind to yourself. Find ways to talk about your grief instead of internalizing it. There are support groups, often associated with hospitals. Find a counselor, especially to deal with any anger you have surrounding her death. Anger is corrosive. Also, don't underestimate how much your grief is affecting your pain level.

My second suggestion is that you ask your doctor about a long acting medication called Nucynta ER. It is also available in IR (immediate release). Nucynta has a lower potential for addiction because any euphoric effect is limited. I believe that it acts similarly to tramadol, but it is much more powerful. My doctor prescribed it for me for breakthrough pain that the suboxone did not take care of. It was VERY effective for me without euphoric side effects. Some people have bad reactions to it that subside after a couple weeks of use. I had no side effects that I could tell. Please look into it for yourself. Make sure you mention to your doctor that it is supposed to be less addictive.

If you were here I'd give you a big hug and set aside hours for you to talk about your mom. I won't say that the pain in your heart will ever go away, but over time your heart will get more used to the pain.

Amy

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PostPosted: Mon Jul 08, 2013 12:28 am 
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Hey AmyWench, thanks so much.

It has definitely been rough. When my Dad passed in 1998, I gave his eulogy. I did the same for Mom last month. Mind you it was filled with choking and gagging tears and all that, but I made it through it. Of course I was also going through this crap with the doctor change and not doing so great either. Just a really tough time. She had come home on hospice a week before, and the night she passed was just the most stressful time I have EVER experienced in my life. Me and my older two sisters and brother (as well as nephews, nieces - her grandchildren) were with her. She had been gurgling and we called hospice, and they told us to elevate her and turn her on her side, which we did. I got into the bed and laid beside her and put my arms around her, exactly like she did to me when I was a kid. She got much more quiet and passed in my arms about a half an hour later.

As someone else said, stress can have a hard impact on pain, and it certainly did for me. Especially that. I didn't take any more of the medicine (I had already worked hard to cut the dosage in half as it was), but I did need to add Excedrin for few days to help a bit.

I've heard of Nucynta before but had forgotten about it, but I'm hesitant to ask the doctor for a certain medication. You know the drill - asking for a specific medication is "drug seeking" after all. How ridiculous. It's natural for patients with many conditions to request the medication they have been on for that condition, so I guess the world is full of "drug seekers."

I'm so tired of worrying about what I'm going to do if, such as just happened, I need to find a new doctor. It means a new bout of increased pain while the new one reviews the records and then tries his own thing, which of course you don't argue with because you want to be cooperative. I'm tired of wondering if the pharmacy is going to have it in stock or if it will be another battle with another pharmacist who looks at you like a dopehead and talks to you like it. Oh, but being worried that your medication won't be in stock is a sign of "drug seeking," I forgot. My Mom was diabetic, and if her insulin weren't in stock she would have been in trouble. But I forget again, PAIN isn't the same - just deal with it. So you can't function and are a grown man on the verge of tears, man up dude. It's only pain.

Cut your dose in HALF not once but TWICE, use one doctor, one pharmacy - everything you are supposed to do as a responsible patient - and you still just get crapped on.

I'm just at the end of my rope with the whole damn mess. And the past week with this Oxycodone to Suboxone and back to Hydrocodone bit has taken an extra toll on my body. I'm tired of playing a silly game, completely cooperating and bouncing around for the sake of perception and to ease any suspicions while the pain just continues incessantly, relenting only occasionally and even then briefly until the drumbeat, claw and lightning bolts start again. Two hours sleep here, an hour there .... that's how it goes.

You know the point to which I've actually been driven? I'm not going to run out tomorrow and do this, but it's on my mind more and more and I mention it to stress where I am. If this continues and it turns out that I'm just stuck with no relief for the foreseeable future, I've thought I'll get a fancy hotel room and treat myself to room service. Do something I've NEVER done and overtake my medicine so that for just ONE night I'll be completely pain-free. I don't remember that feeling anymore. All I've known for some time is "tolerable but functional." But that night I would make sure it would be completely relieved. Record a few videos, write a few letters. Then take a mixture and peacefully fade to black - no more pain, EVER. Wherever Mom and Dad are now, if anywhere, has to be better than this ****ing unrelieved misery.

And you know what's hilarious about the whole damn thing? It would be seen as another overdose indicating why this medication is evil and leads to horrible things - not as someone who couldn't get the relief he needed. It would be interpreted as exactly the OPPOSITE of what it actually would be!

I'm not alone. There are MANY in the same position, some who have already done what is more and more on my mind now. Yes, there are those who fool doctors because they are addicted or to get pills to sell on the street at a profit. But you know what? I would rather a HUNDRED of those people continue to get away with it than just ONE person who legitimately needs it endure this. And yes, there have been those who have really needed it and either unintentionally or intentionally overdosed. But you know, THEY are responsible for that, not their doctor. Take the medication AS PRESCRIBED, period. If you try to medicate yourself and screw up, you are the one to blame for that. Of it someone does it on purpose, again that person and only that person made that choice. Maybe, just maybe, they found themselves in this same position and took the only way they could see out - the only way I'm beginning to see.

Don't go running for a phone or trying to find out who I am and where I'm at. Like I said, I'm not saying this as a "threat" and I'm not actually making plans to do it. I'm only saying that the thought is more and more prevalent because I cannot get this pain relieved - to stress the points to which so many of us are pushed by a government and law enforcement more concerned with the only "drug war" they can win - one against doctors and their patients, more interested in catching the bad guys instead of helping those who need it.

In spite of the ridiculous drive this doctor has taken me on with this, I do have to admit something. I think I said in a previous post that there just may be another use for Suboxone that isn't being considered, I don't know. My tolerance, even in just a week, did not drop to the ridiculous 40mg Hydrocodone per day he prescribed, but it DID drop a bit. I was at 30mg Oxycodone every four hours. Now, I tried to take TWO of the Hydrocodone just to see what it would do. Sure enough, though it didn't relieve it as well, it DID help and I was able to move and do things I needed to do - tolerable but functional, which I can accept. On conversion, this would be 15 to 20 mg doses of the Oxycodone instead of 30mg, again almost ANOTHER half drop. It seems that may be something to look into. I would be willing to go on Suboxone for a week twice a year, for example, to keep my tolerance low enough so that escalation of it wouldn't be required (actually it had been quite some time since the last one). Granted, that would mean a week of no withdrawals but a whole lot of pain while things settle down before returning to the medication, but it seems like a viable option.

The only thing I can think to do is to approach him with the idea of the last thing I want to do because of what I've read about it, but it would (I've never taken it, just assuming here) relieve my pain and also assuage his fears - Methadone. Seems like the only compromise here from what I'm finding. I'm just very scared of going on that medication even if he agreed to it.

I'm just both emotionally and physically exhausted and probably thinking overly dramatically. I just know that I can't take a whole lot more of this, that's for damn sure.


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