Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group scared about pain killers

OK so this week I'm in a good flare, which has got my fibro flaring as well. My vicodin (5/500) stops working all together at 3-3.5 hours, no where near the 6 it was working before. Now my dr wants to see me tomorrow to talk about long acting medications. It's scaring me. I'm not sure how I'll react to something like oxycontin if that's what he's talking about. I asked him the last three visits about increasing my dose of vicodin to 7.5 and he always says no. I think he was thinking the vicodin isn't strong enough for me anymore. I never like taking stuff unless I need it, not an every day kind of thing. But I guess if this is how it goes then this is it.

But it feels like such a huge step!

Maybe I'm over-reacting and he's talking about something else. I guess I'll find out tomorrow. But if not, how do you guys who are on stuff like oxy make it? Does it make you feel loopy or high? Or is it less of that since it's slow release?

Hey Sweetie,

This is always a tough one...if you have an addictive personality then I would try and stay away from the big pain meds.

My experience is I have been on just about everything..Fentanyl Patches (1 patch every 72 hours) is one of your biggest but I will tell you it is nasty stuff. They make you feel horrible as far as Im concerned and I was once at 75mgs and that is pretty big. My Dr. kept wanting to up me on those and I have known cancer patients to be on 50's and up. If you are truly in mind bending cant function kind of pain then they are good to have.

Oxycontin is what I use now. I have 20mg ER (extended relief) and I take as needed. I have taken 2 at a time 40mgs so far that has always at least made it bearable, I have never gone for TOTAL pain relief THAT has only come for me with morphine in the hospital. Oxycontin makes you kind of jumpy (it does me) and I can't ever take it at night or I can't sleep.

Tramadols/Ultracets 37.5, 50mgs, 100mgs, these have been wonderful you might ask about these. I am currently on 50mgs at a time and at times take 2 at a time. They come alone or with acetamenphen (sp?) I personally like WITHOUT because I take several of these a day and I don't feel like I need to be downing 2000mgs of Tylenol on top of it. If you are in moderate pain these would be good. You might ask your Dr. for 37.5. I get 100 at a time but most Drs. aren't willing to just dole out pain meds.

Hydrocodone..these are good as a pain starter. I was on these for several years until they did not work anymore. Drs. are much more willing to prescribe these or Tylenol 3's, you can also get a script for 800mg Motrins or Ibuprofin and those work at times, it just depends on how bad you pain is.

My motto is ALWAYS start out at the lowest you can and hold out the longest. Most pain meds are addictive and if your Drs. even think for a moment that your getting that way they will snatch them away.

I have been lucky that I have a Dr. that trusts me BUT I also always take my meds with me, keep a log of when the pain was at its worst and how many of this and that I took and show him that see I haven't seen you in 6 weeks so using 100 tramadols and 60 Oxy's isnt that much on the broad scope.

There are alos things like lidocane patches (I have never used) and steroid injections which have ALWAYS seemd to help me.

I hope you get some relief soon, let me know if you have any other questions.

Hugs,

Lisa

Hi GG
I agree with Angelmom I take Co-Codamol and Tramadol and they help me but I only take what I need to cope that seems to work fine for me.Hope you get some relife soon.
Kevin

Hi Gardengirl!
I know where you are coming from- I just began taking my tramadol on a regular basis a few weeks ago. It is working for me and I am taking 100mg every 6 hours during the day- what is seeming to happen is that the pain isn't having a chance to get ahead of me. Before this I would try not to take them more than once a day and by evening the pain would really build and ofcourse make it difficult to sleep and that would make the pain worse the next day- you get the picture I'm sure. Strange as it sounds by staying on a schedule I take less of the heavy hitters (demerol for me). In fact I have not had to take it since starting the schedule ( could also help that I started Enbrel last week)

I know it is a difficult decision to make and absolutely speak to your doctor before doing it- I just wanted to mention to you what is currently helping me.

Best of luck at your doctor visit- I hope you and he find a medicine and plan that will give you some relief. Sending support and painfree thoughts your way!

Anna

This is a big step, so no wonder it feels like one. You've spent years doing everything you could not to have to do this. I don't think I'd be any happier about it.

I have a friend who'se been on Oxycontin for years. She lives her life fully, drives, works, it has never affected her ability to think clearly. For some people, it is extremely beneficial. This article from WebMD is very good, by the way. At least, I like the clarity of it.

Ultimately, only you can make this decision. You're doing the best thing you could. Asking questions. I have no doubt you will make the right decision for you and your quality of life.

Warm hugs,

i gardengirl,

Sorry to hear you are not feeling well right now. I can understand your fear about switching to a drug like oxycontin, but I'll try to give you some reasons why that drug and other long-acting pain relievers are really the best way to go with AS and fibro pain--hopefully, you won't be as scared of them after I'm done!

I've taken a good-sized dose of oxycontin for quite some time now. Heck, I don't even really remember what year I started taking it; my best guess is that I've been on oxy for7 or 8 years. During that entire time, I've only increased my dosage ONE time, and yet the drug has continued to work very well for me the entire time I've been on it. I know there are many stories of folks building up a tolerance to it very quickly and thus they need to keep escalating their dosage until it is at an almost unthinkably high level. I won't deny this has happened to some people, but it definitely is the exception to the rule. It is true that everyone processes painkillers differently and what works for one person may not even be felt by another. Conversely, a dosage that doesn't affect one person's mental status even a little can leave another person feeling completely stoned and loopy, unable to carry out basic tasks, let alone hold down a job. The key is working with your doctor--or a pain clinic, if he decides to go that route with you--to titrate the correct dosage amount right when you first start taking a new pain medication. This means that your doctor has to be open-minded enough to understand that the starting dose he gives you might not be nearly enough to reduce your pain, even if it worked for another patient. And, he must be willing to be available to meet with you as many times as necessary to keep adjusting that dosage level until you find just the right one for you--the one that reduces your pain to a manageable (or, hopefully, even better) level while at the same time leaving you clear-headed and able to perform your daily routine.

Because it was your doctor who brought up the idea of changing to oxy, I have a feeling that he a) understands the role of long-acting opioid pain medications, uses them with other patients, and is not scared to prescribe them as needed when other drugs have failed; and b) knows that it might take a few attempts and appointments to tinker with your dosage level until he gets it right and you are properly medicated. I hope I'm right about this--if in fact your doctor doesn't describe these meds to many patients and actually opposes their use, but is grudgingly making an exception in your case, it might mean you'll have a bit of a tough road ahead of you as you try to find the right treatment plan for your pain. Based on your post, I'm actually quite optimistic that you've got a good doc who knows what he's doing with pain meds and is very willing to help you feel better.

As for how you'll take the medication itself, I'm going to go ahead and use oxy as the drug you'll be taking as I talk this out, mainly because it's the one I know best and because I think it is definitely one of the best choices for you. Oxy actually does come in two forms: the long-acting pill form that most of us are familiar with and that has also caused such a furor in the media and with the DEA because of its use by drug addicts, some of whom labeled the drug "hillbilly heroin" (one of the first places it was abused by large numbers of people was in the mid-South states such as Tennessee, Kentucky, etc., hence the "hillbilly" moniker). The long-acting oxy is known as the ER, or extended release, version of the drug and comes in sizes ranging from 10mg up to, I believe, either 80 or 100mg (not totally sure on the size of the biggest pill). It comes in a special type of pill that is designed to be very hard to cut or break, as the drug is most commonly abused by grinding it into a powder that can then be either snorted or injected. If you do go on the long-acting oxy, remember to NEVER try to break a pill in half, NEVER chew it, and NEVER do anything else that compromises the integrity of the whole pill size it comes in. When you chew an ER oxy (or snort/inject it like an addict), you receive the entire 12-hour dose of the drug at once, leading to a powerful high that can kill you rather easily, especially if you've never done it before.

This is one of the points where I want to tell you that you actually DON'T need to be scared of oxy, however. The fact is, you will never, ever come across a situation where you would want to chew one, or break it apart. The entire point of taking oxy for our chronic conditions is so we can get consistent pain relief over a long period of time, NOT a quick, massive reduction in pain (and common sense!) that is quickly gone and thus leaves you with another 11 hours of no pain relief. Because you are a responsible patient who does suffer chronic pain that needs to be managed well so you can lead the life you want to lead, you need to learn to ignore the news stories about how awful oxy is and ignore those who actively try to demonize the drug, some to the point of trying to get it banned. It is a shame that, as always, the few bad apples are spoiling things for the rest of us, because oxy is actually an excellent drug for the long-acting treatment of chronic pain that should be used much more often than it is for the treatment of non-terminal but chronic, severe pain, such as what we experience with AS (and fibro). If you do end up taking oxy, and it works well for you, you'll be very angry when you see all the negative stories about it, and you'll be very angry at those who are trying to ban it because someone they knew was unable to use the drug properly. OK, off the soapbox now--the main point in all this is that you do NOT need to be scared of oxy due to all the negative stories you might have seen or hear.

In addition to the ER form of oxy, there is another form that is called the IR form, where IR stands for "instant release." As I'm sure you can guess from the name, oxy IR is designed to be used when a patient needs strong pain relief very quickly; that relief can last up to 4 hours. Oxy IR also comes in a pill--the most common dosages are 5mg and 10mg--and, I think, also comes in a fast-acting liquid; I'll have to double-check that later. More than likely, you won't be taking the IR form, and there's a good chance your doctor won't even mention it. There is one exception to that: I know from reading a chronic pain forum that some pain doctors like to prescribe oxy IR in conjunction with oxy ER when their patient has severe pain that can act in a variable manner. The ER med is used as the base med and taken regularly every day, while the IR med is kept on hand for emergency use. In other words, in chronic pain patients, it is used when a severe flare occurs, one where the pain is much higher than normal and thus not helped at all by the oxy ER. When a flare occurs, the patient is allowed to take the oxy IR to supplement the oxy ER. It provides a quick and powerful dose of oxy that goes into the system immediately and also wears off fairly quickly. The goal is for the patient to only take one dose of the IR on any given day--in other words, one dose is designed to put out the flare--and to only need the IR every once in a while, not everyday. When a patient uses oxy in this manner, they are taking it to treat what is known as "break-through pain," or pain that is sudden, of short duration, and not touched by the normal pain medicine. While I first read about the oxy IR in that other forum, I do know that there are some KA members who do use Oxy IR, or a similar drug, in order to help manage their worst flares, the ones where even the oxy ER doesn't seem to do the job very well. Thus, as you try to determine what drug and dosage will work best for you, it is possible that you and your doctor may decide that your pain is best managed through a combination of the IR and ER forms of oxycontin. Make sense?

OK, so now that you have some basic information about oxy, I still need to tell you why you don’t need to be scared of it, and why you should be excited about switching to a long-acting med, right? No problem, I can do that! First, I think I’d like to show you the two main reasons why you SHOULDN’T be taking the vicodin anymore. In fact, I think this will show you why you really shouldn’t have been taking it in the first place.

Basically, there are two primary reasons working against vicodin as a correct treatment for chronic pain, such as that found with AS:

• 1) Your doctor knows that, because the type of pain you have is both chronic and severe, the best way to manage it is to try to get it down to a consistent level that avoids a "boom and bust" pattern of pain management. With the short-acting meds you are taking, your body receives several quick, intense doses of pain medication each day. This does seem to work well at first, as the intense dosage does a good job of reducing your pain, and, when the drug is new, it seems to last the full length listed in the literature. It's new to your body and its pain receptors, and at first they welcome the reinforcements to help deal with your constant pain. However, because you pain IS constant, pretty soon the short-acting drug does exactly what you are seeing now--it stops working as effectively as it first did. This is because of the nature of your pain. Short-acting meds are designed to attack a pain source and knock it out immediately. The prescribing doctor doesn't care at all if the drug starts to lose its effectiveness in a fairly short period of time because s/he is prescribing it in the first place under the assumption that the pain in question is a temporary situation that will be gone in a few days, maybe a few weeks, tops. In fact, the doctor knows that the drug WILL stop working well if it is taken for much longer than that because that's what is supposed to happen! If it kept working perfectly for a long-period of time, the person taking it might never realize that their pain was actually shrinking and/or completely gone! If the drug kept working for the full 4-6 hours for months, and the patient took the drug on-time every time, s/he would never even know what type of pain they might still be feeling because the pain med would keep the pain hidden 24/7. This does occasionally happen even if a doctor tries to prescribe such drugs for short periods of time and at the lowest dosage possible--this is how people become addicted to short-acting drugs like Vicodin, etc. They begin to mentally lean on the drug and to believe that if they stop taking it, the pain will return and be overwhelming. This can even become a psychosomatic self-fulfilling prophecy, as once someone becomes dependent on a drug like vicodin, it is not uncommon for them to feel the pain sharply return if they ever stop taking the drug. Usually--but not always--that pain is just a phantom pain that exists only in the person's mind; it is one way the brain manifests its new craving for the drug, by making the person believe the original pain is still there! Throw in the very real pain that person might feel when s/he starts to physically withdraw from the drug, and you can see how a recipe for disaster can easily be created with these short-acting meds. When these drugs are given for a chronic condition like AS, the way the drug ultimately becomes ineffective and the possibility of addiction exist in slightly different form.
  
  As you've seen with your vicodin, the simple fact is that your pain is so constant and so severe that eventually the drug stops working anywhere near the full 4-6 hours. In fact, I doubt very much that the drug EVER worked a full 6 hours for you. I, too, took vicodin for my AS pain before I switched to oxy, and I know for sure that I never, ever received anywhere close to a full 6 hours of relief from vicodin. When I first started taking it I did make it to 4 hours, but that was it. And even then, my pain was only reduced to a barely tolerable level, nothing more. I never felt as if I was taking some miracle drug that wiped my pain away; no, I recognized that I had found a temporary panacea that masked the pain enough to let me keep working my job, nothing more. Because of this, I knew I would eventually have to switch to a more powerful, long-acting med if I wanted to really battle the pain. I think I managed to stay on vicodin for about 2-3 years before switching to oxy, and, honestly, even that was too long to stay on the vicodin--the switch should have been made long before that, but my doctor didn't know a lot about pain meds at that time. (Nor did I, for that matter! )
  
  
• 2) The vicodin you are taking actually is made up of two different drugs. The first is hydrocodone, which is the opioid medication included in the drug. The second is good old acetaminophen, aka, Tylenol (as a brand-name, anyhow). Together the two substances combine to provide short-term pain relief, but you might be surprised to learn that it is actually the non-narcotic acetaminophen that makes it dangerous to take Vicodin for anything other than a short period of time. In every vicodin pill you take, there is either an entire regular dose of acetaminophen, or an entire extra-strength dose (depending on whether you have the vicodin that includes "350" or "500" in its name). Studies have long shown that large doses of acetaminophen taken over a long period of time could badly damage the kidneys. Brand-new studies that have been in the news lately have indicated that damage can occur to the kidneys and liver much sooner than once believed and at much lower doses. Therefore, it is a very serious matter to take vicodin--or any other pain medicine that has acetaminophen in it--for more than a couple months at a time, and these new studies likely mean that you will find fewer and fewer doctors who prescribe vicodin for chronic pain like that caused by AS for any length of time. Instead, they will correctly put their patients on long-acting pain medications right from the start, a situation that might actually ease the fear that you and others feel when they are told they have to switch from the short-acting meds they are used to over to the long-acting meds. Let's face it, you're hardly the only person who has been nervous or scared when it comes to starting long-acting pain meds, gardengirl, and hey, the fact of the matter is you have a right to be scared based on the way these drugs have been portrayed, both to patients and to the public in general. I mean, heck, they are scarier because they represent the unknown, are stronger, and have received bad reputations due to terrible misuse by drug addicts. Who wouldn't be scared of that?

Ok, now you can easily understand why vicodin really wasn’t a good choice to begin with, and why it definitely is not a good candidate for you to keep taking any longer than you already have. So what makes a more powerful, seemingly more dangerous drug like oxy (and all the other long-acting opioids) the best choice for you and any other chronic pain patient? Well let me tell ya.

First off, if you do take oxycontin, it is best for you to take just that--the version that is called, simply, oxycontin. That is because oxycontin contains only the opioid medication--which in this case is a semisynthetic pain reliever made from the opium-derived thebaine. When I say that’s all it contains, I mean there is no acetaminophen, no aspirin, and no ibuprofen. Not surprisingly, there are drugs in the oxy family that DO contain each of those additional medications. The best-known one is Percocet (also Endocet, Tylox, Roxicet, et al.), which contains acetaminophen; if you were to take that, you’d essentially be right back where you started with the vicodin! Next is the also-well known Percodan (Endodan, Roxiprin), which contains aspirin, and finally there is Combunox, which contains ibuprofen. I’m sure there are other oxy-family meds that I am forgetting here, but these are the main ones, and they make the point that long-acting pain meds come in many forms with many names, meaning it is important that you discuss whatever med you end up on very carefully with your doctor so that you understand exactly what it is you’ll be taking.

Once the decision is made to stick with the oxycontin, then your doctor will need to decide what dose on which to start you. To decide this, he’ll certainly look at how much vicodin you were taking and how well that was working for you (obviously not well). He’ll also take into consideration what a is considered a typical starting dose of oxy. This is where you can probably help him out, assuming he doesn’t ask you himself about the things I’m about to discuss. It would be a good idea to tell him how you have tolerated any and all pain meds in the past: Did the vicodin or any other narcotic you might have taken (perhaps morphine after surgery) make you feel high at first, but this feeling went away as you adjusted to the medicine? Did it make you feel dizzy or disoriented? Essentially, did it make you feel high or buzzed, and if so, at what dose level did that happen? Did it happen every time you took the drug, or only when you first started taking it? Was it worse if you took it on an empty stomach? Did any of the meds cause you to vomit? More than once? Did they give you headaches, dry mouth, nausea, or any other smaller side effects like this? Answers to questions like these can help your doctor determine if you have tolerated opioid medications well in the past or if they have really caused you to feel high or otherwise disoriented, even at low doses. I know that I take two, 40mg pills of my oxy twice a day, and not once in the 7-8 years I’ve been taking it have I ever felt high while taking it. Not even a little. Contrast that with my ex-wife who once had a prescription to take one 20mg tab of oxy. I’m telling you, within an hour she was stoned out of her skull on just that low dose. In addition, about two hours in, she became very nauseated and had to throw up. However, with each pill she took after that, those side effects faded a little more every time, and within a week she no longer felt high when taking her one pill and she no longer had a problem with nausea. Oh, and the drug worked very well for her disc pain, also.

Basically, you can expect your doctor to start you on the lowest dose that he feels will adequately control your pain. If you feel nervous at the size of the dose he chooses, either because it is too large or too small (in your opinion, which absolutely DOES count), speak up and tell him why. If you’re ok with it, then go ahead and get that script filled and begin taking it just as directed. If you have problems the first few times, don’t be surprised, and don’t automatically assume that medication is not for you. I’d say that you should give any new pain med at least a week before you make up your mind as to whether or not you think it is right for you. The exception to this is the dosage level. If you tolerate the drug fairly well in every way but you find that it is not really knocking down your pain like your doc said it would, that’s a different story. I’d still give it a few days, but if you are really hurting and it is just blatantly obvious that it’s not even providing the level of pain-relief you received from the vicodin a week before, then it’s almost certain that he started you on a dose that was too low for your illness. Depending on how he told you to handle such situations, do not hesitate to contact your doctor right away so you can let him know that the dose seems to be totally inadequate. If he’s the good doctor he seems to be, he’ll titrate you upward to the next level. For this reason, don’t be surprised that even if he wants you to start out taking 20mg every 12 hours, he writes your script in such a way that the pharmacy gives you 120, 10mg pills instead of 60, 20mg pills. That way, if the 20mg is not enough, he can easily bump it up to 30 mg without having to give you a new script. Then, if 30mg is still too low, he can bump you up to 40mg every 12 hours.

Sure, your script will run out way early if that happens, but that will work out fine because he’ll be writing you a new script at the higher dosage level, meaning your insurance company will cover it, no problem. So, this is how he’ll handle your initial script if he’s smart, anyhow, but obviously that doesn’t always happen. However he writes that first one, I hope he is willing to work with you those first few weeks to adjust the drug as needed, up to an including writing you a new script with a new dosage if needed. If that is required, he might want you to bring your initial script to his office so it can be destroyed with him watching, so it’s always a good idea to bring the bottle with you your first few appointments. (An important, and often overlooked note: If your doctor does ask you to bring in a script so it can be destroyed, it is not out of line for you to ask to watch as that is done. It might make the doc a bit angry, so it’s up to you if you ask to watch, but the sad bottom line is, there are plenty of doctors who have been caught diverting their patient’s pain medication back to themselves in precisely such situations. Just wanted to throw it out there.)

Hang in there, we’re almost done now! The only other dangers to watch out for with a drug like oxy is an allergic reaction. If you have never had an allergic reaction to any other opioid pain reliever, you will likely tolerate the oxy just fine as well. Just in case, though, you should take a look at the common symptoms associated with an allergic reaction, which you can find at drugs.com at http://www.drugs.com/oxycontin.html Checking on those will also give you a chance to read all the information they’ve compiled about oxy, including the common side effects, more serious side effects, and general info. It will probably answer some questions I’ve forgotten to address here.

When it comes to those side effects, one reason that I’ve always been a champion supporting the use of opioid drugs since I joined KA is that, quite simply, they have far less dangerous side effects than most of the drugs we take for AS. They are far safer than NSAIDs, as they won’t destroy your stomach and cause a fatal bleeding ulcer; they are far less toxic than a drug like methotrexate, which we all know is a very, very powerful drug that has a myriad of side effects; and they do not put our immune system at risk like the otherwise terrific anti-TNF drugs do, meaning they won’t make us susceptible to other illnesses. The bottom line is, as long as you NEVER take more pills than the doctor has prescribed and risk an overdose, and as long as you are able to correctly manage the risk of becoming addiction to such medication, then opioids are one of the safest, most effective drugs you can take for AS or any other condition.

The main reason they have such a terrible reputation is, again, because of the way that drug addicts have decided that oxy and other pain relievers are just as good as heroin when it comes to getting high. This in turn has led the Drug Enforcement Agency here in the U.S. to go completely over the top in its attempts to limit the illegal use of opioids (especially oxy in recent years). The DEA has been notorious for raiding the offices of pain doctors who dare to prescribe opioids to a great number of patients, and sometimes in very high doses, and then prosecuting those doctors to the fullest extent of the law even though it is blatantly obvious they were only helping legitimate pain patients who had been unable to find help anywhere else, NOT diverting drugs to the street for a huge profit. In some states in the U.S., there is such paranoia over opioid use and such fear has been instilled into doctors by the DEA that with the exception of terminal cancer patients, chronic pain patients are unable to find a single doctor willing to prescribe the opioid pain meds they so desperately need. The result is thousands, if not more, patients are being made to suffer needlessly across the United States. The climate has improved in some small ways in recent years, but it is still a long, uphill fight that must be pushed forward at every turn.

One last section on addiction. While I have been quick to paint opioid medication as safe for you, and better for you in many ways than other drugs prescribed for AS, I do not want to underplay the possibility of becoming addicted to oxy or other pain relievers. The fact is, even chronic pain patients can become addicted to pain meds, and when that happens, it is doubly sad because not only does that person then have to overcome the hell that addiction can bring, s/he also has to face the rest of their life without the pain meds that can make them feel better for very obvious reasons. Thus, it is essential that anyone suffering from severe chronic pain takes every step possible to avoid ever becoming addiction to their pain meds.

But, do you know what addiction really is? Sounds like a trick question, but really it isn’t. Everyone has a general idea that addiction means reaching a place where you must take a given substance at increasingly higher doses and increasingly shorter time periods in order to feed the craving your body and brain feel for that drug. That description is quite accurate, but it represents only HALF of the addiction equation. Essentially, there are TWO types of addiction associated with opioid pain relievers. The first is the classic form of addiction I just described, the one we see in all the cop shows and the one that led to the war on drugs. That type of addiction is what I call a mental addiction--your brain THINKS you need the drug to survive, to feel good. Now don’t get me wrong, your body also becomes fully involved in this and exerts strong physical signals that your body is craving the drug as well, but those responses are secondary to the mental aspects. Often, this kind of addict had some kind of accident or illness that caused severe pain and led to his/her introduction to opioid pain meds. Thus, initially, the meds were needed and were helping the person heal. However, after some length of time, it is obvious that the person’s injuries have healed, and yet s/he is still asking the doc for full prescriptions for the pain meds. In fact, they might even ask for an increased dosage of their pain meds, as the old dose is no longer stopping their “pain” (which really doesn’t exist anymore)--more importantly, it’s not providing the buzz their brain craves. Any good doctor will recognize that his/her patient has crossed the line to addiction and try to help that person overcome the it by recommending treatment centers, offering to provide just enough of the pain meds to help the patient taper off them, etc. What happens at that stage is up to the patient, but if the help is turned down, the next step is usually buying the meds from street dealers, or going “doctor shopping” by going to dozens of doctors and drug stores to get numerous prescriptions filled. The final stop is using crime to pay for their habit.

That is the most horrible form of addiction, and really, it is the only one that the general public, and, unfortunately, many people in both medicine and law enforcement understand. When a doctor says he is worried about you becoming addicted to oxy, so he won’t prescribe it except for cancer patients, it’s that type of addiction he’s worried about. Which is really a shame, because study after study has shown that people who suffer from real chronic pain and thus have a genuine need for pain medication almost NEVER become addicted to their meds in the sense we just talked about. It doesn’t happen because, as I mentioned, you tend not to get high off your pain meds when you have very real pain that they help control, and because chronic pain patients understand what is at stake and that they risk a life of horrifying pain if they ever slip into addiction to their pain meds.

So what is this second type of addiction I’m talking about then? Simple--it’s physical addiction. In other words, it is an indisputable medical fact that if you take opioid pain medication, your body will, over time, develop a need for that drug. The way these drugs work, they trigger reactions in your system, reactions that your organs and muscles become used to in a fairly short amount of time. If you take away the med suddenly (stop it cold turkey), your body experiences a type of shock because the substance it had come to expect on a set schedule is suddenly missing. Very quickly you will experience the craving and other symptoms associated with a physical withdrawal from narcotics, which can include sharp muscle pains, extreme sweating, nausea and vomiting, even hallucinations in extreme cases. It is not a pleasant experience, and it is not a safe experience--it can really wreak havoc on the body. Luckily, for the chronic pain patient who has been taking his/her meds as prescribed, preventing this physical withdrawal hell is extremely easy. Working together with his/her doctor, the patient establishes a taper schedule, which means they set up a time-table that will be followed to take them from full, regular doses of the med all the way down to being fully off of it, all the while experiencing none of the pain and trauma I described above. By slowly decreasing the number of milligrams the patient takes, and perhaps even slowly increasing the amount of time between dosages, the patent will gradually wean his/her way off the drugs with absolutely no nightmarish side effects. Once the taper schedule is completed, the patient will feel zero craving for the pain med because it has been withdrawn from the system so slowly.

Differentiating between these two types of addiction is incredibly important for any pain patient. That’s because the former type, the mental addiction, should never happen to anyone who takes their meds properly, while, conversely, the latter type, the physical addiction, will happen to every single person who ever takes opioid pain meds for more than a week or two. That’s right--EVERY PERSON who takes opioids for more than a week or two will experience physical addiction to the drug and will have to undergo a taper schedule if they ever stop taking the drug. To do otherwise--to stop cold turkey--is madness and would bring about horrible withdrawal symptoms that are no different than those a junkie experiences when s/he stops taking heroin cold turkey. The big difference between the chronic pain patient and that street junkie is that the pain patient knows the dangers of withdrawal and willingly works with his/her doctor when they are ready to stop taking a pain med. The street junkie? Uh, not so much.

Thus, if any ignorant friend of family member ever tries to shower you with disdain and tell you that you’ll become nothing more than a common addict if you start taking pain meds, you can look them in the eye and tell them they don’t know what the he** they are talking about! You can then proceed to explain the precise difference between the two types of drug addiction that they think they know so much about and tell them they can climb right off your back because you are taking your meds under a doctor’s strict supervision and because you have been diagnosed with severe chronic pain. If they continue to harass you, just stop arguing with them and tell them that you feel sorry for them and that, frankly, they should try not to display their own ignorance so blatantly while in public--it makes them look bad!!!

I did not intend to write NEARLY this much when I started GardenGirl, but as I got going, I realized that I could take this opportunity to finally put all my thoughts on long-term opioid use down on “paper” here in KA. Now, anytime someone asks this type of question, all I need to do is return to this post and cut-and-paste the sections I need without having to reinvent the wheel! It took me a while to write all this, but it was worth it from my perspective. I just hope it was worth it for you and that this has helped ease some of your fears about switching to a long-acting opioid for your AS.

Good luck, and keep us posted about what happens next.

Brad

Hey Gardengirl,
I was just going to post about a very similar situation! So, I think I get where you're coming from. My morphine seems to be wearing off in less than 4 hours these days, so three times a day dosing really isn't cutting it (it's for nerve pain). I know I need it, but stepping up to oxycontin is just something I was trying to avoid for some reason... But I think, if you need it, you need it, right? Hopefully we'll be better off with it. And I guess we can always go back to less once things start looking better. (Can you tell I've been self pep-talking? lol How lame am I!? lol) Let me know what your doc has to say. If you can pass along any info, I'd appreciate it.
Really will be hoping for the best for you.
Hugs!

Thank-you Brad! I think we were posting at the same time, so I hadn't read your post when I was writing mine. Thanks for taking the time to write it all out, it probably helps more people than you know. I think I'll be talking to my doc... would be good to go through the day without the bad pain between doses.
Hugs!

Gardengirl, Megan,

That makes 3 of us going thru this together -- I had the same conversation with my pain management surgeon yesterday. I am up to percocet 10/325 x 6 a day most days... I have had SO MANY epidurals, facet injections, etc., but with all the inflammation, it only works for short while. Plus the Enbrel, I'm wondering if my arthritis could even be considered controlled anymore. I am getting much worse, my ankles, knees, wrists....and the injuries from car accident and my thoracic spine is sick painful

Anyway, we decided to do an extended release muscle relaxer with the percocet and re-eval in 2 weeks. In the meantime we might start also accupuncture and some funky laser therapy. Whatever it takes, right??

But I have the same questions - I work full time and somehow work around the pain killers. If on long acting, will it affect more the ability to drive, cognition??

Looking forward to us learning more here........

Jess xo

just be aware that lots of tramadol along with antidepressants and fibro meds (lyrica) all put together puts you at risk for seratonin syndrome which is very bad and something you do not want... I was taken off tramadol for this reason. the cumulative effect of all these meds can be extremely dangerous - just wanted to make mention xo