Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What do you do for pain control

Hi Jason,

Welcome to KA, and nice to meet you.

You are doing many of the things that a large number of KA members do to help with the pain, so you can rest easy that you have a doctor who is helping you take all the right pharmaceutical steps. Of course, as I'm sure you've already read here at KA, there are plenty of non-drug routes to take to reduce pain too, and I would definitely recommend exploring all of those as well. At the top of the list is the no-starch diet, which many members have had great success with. Additional steps can include massage, biofeedback, acupuncture, etc.

I did want to specifically address your mention of oxydocone and the your worries about how you use it. I know you're concerned about using and becoming addicted to a narcotic, especially one as strong as oxy, and of course that is a valid concern to have. However, I can tell you that I myself have been on oxycodone for well over 10 years now, and, frankly, without it, I would be in far, far worse shape than I am now. First off, the drug allowed me to keep working for at least 5 years longer than I would have been able to without it. Oxy, combined with the anti-TNF drugs, kept my pain at a very manageable level and allowed me to keep working at my job in the publishing industry. I did end up taking full disability retirement in 2007, but that was after working for 21 years with very severe AS; as I said, without the oxy, I likely would have been out of work at least 5 years before that.

Until recently, I was on the extended release form of oxy, taking 80mg twice a day. Unfortunately, there has been some big mess involving the generic version of the extended release that started about 6 months ago, which forced me to switch to the instant release form of the drug. With the IR, I take 1-2 30mg pills every 3-4 hours, or at least that's the level that is prescribed. If I play my cards right, which I do most days, I take 2 pills in the morning and then don't take another dose of 2 pills for at least 8 hours. Now, if I was still working, I would probably not be able to last that long in between doses, so I do realize that in your tough line of work, you would likely need to stay right on your dosing schedule and would not be lucky enough to stretch things out like I do.

Even if that's the case, to that I say this: Big deal. In fact, big freakin' deal. Yes, there is the real concern that you can become addicted to any narcotic pain med, especially one as strong as oxycodone, but for me and most others here, the bottom line with opioids has always been this: If you suffer from a disease that causes chronic pain that likely will never totally go away, then you absolutely should take ANY pain medication that helps make that pain better, including opioids. Doctors are so afraid of their patients becoming addicted to these meds, but if that patient is ALWAYS going to experience moderate to severe pain from their disease, then why in the world should they not be allowed to use every medicine at their disposal to manage that pain? That seems to be a very common sense statement, I know, but unfortunately the climate here in the U.S. is incredibly negative when it comes to narcotic pain meds. The reason for that, of course, is all those great folks who have decided to use oxy recreationally to get high, thus demonizing the drug in the eyes of both the DEA and large segments of the public. I do understand that drug addiction is a disease and I do have compassion for those who become addicted to oxy, but at the same time I can't help but be very angry with those folks who abuse oxy because they have made it very difficult--in some cases impossible--for people with AS and other similar chronic illnesses to receive the adequate pain medication they should be entitled to.

One point that I've made before here on KA that I will make again because of your real concerns about becoming addicted yourself is this: It is VITALLY important that you realize that there are TWO types of addiction when it comes to opioid pain medication. The first type is the kind that EVERY person who takes such meds experiences, and that is a physical addiction to the medication. All this means is that, because of the nature of the drug, your body will come to expect that it will be delivered on a regular basis due to the chemical and physical dependencies the drug creates in the body. Being physically dependent on a drug simply means that you need to a) make sure you deliver it on a regular schedule every day; and b) that you NEVER stop the drug cold-turkey, but instead, if you do have to stop taking it, you taper off it by slowly reducing your dosage level while under a physician's care. As long as you do those two things, you will be able to manage the physical dependence without too much trouble.

The other type of addiction is the kind that is far, far worse than the physical addiction and is actually the type of addiction that the vast majority of people are referring to when they say someone has become a drug addict. That type of addiction is, of course, the mental addiction that can occur while taking narcotic pain meds. This form of addiction is insidious and very dangerous because it can cause you to start taking more and more of the drug and ultimately cause you to become what we call a drug addict. With a mental addiction, your brain tells you that you need more of the drug even though your pain is either under control or even completely gone. This can happen because your mind is playing tricks on you and telling you that the pain is still there and is getting worse, when in fact it isn't, or it can happen because the drug can definitely cause the feelings of euphoria and pleasure that we associate with street narcotics and prescription opioid meds. Even folks with chronic pain can experience that high feeling, and if they do, of course they are a human being like any other and they might have trouble fighting off the urge to take more and more of the drugs to keep experiencing that high. This kind of addiction is driven by the mental craving you experience as you try to recapture that high, but it is important to note that the more you take the drug for the sake of getting high, the more dangerous the physical addiction becomes as well.

Now, of course an AS patient can become mentally addicted to a drug like oxy and can turn into a drug abuser who is no different than someone without chronic pain who abuses the drug. However, if you were to take a poll of every member of KA who has used oxy or one of the other opioid pain meds, I don't know if you would find even one person who did become an addict in the common sense of the word. This could be for many reasons, but I think my experience with oxy could point to a common reason: Quite frankly, I have never once experienced that high feeling from my oxy, not even the first time I took it. In my mind, this is because the drug did what it was supposed to do--it reduced the chronic pain I was experiencing every single day. I think if there is severe pain present like that experienced by AS patients, it's far less likely that someone will become high off an opioid because the drug has a job to do and, when it does it, wears off before any kind of stoned feeling can occur.

Obviously I'm not a doctor or a medical professional of any kind, so this is just my personal feeling on this, but I do know one thing for sure: Many, many people here at KA have ended up using oxy or other opioid medications, and as far as I know, there have been very few, if any, incidents where people became addicted to the drug in the sense that they were taking it strictly to become high. To me, what this means for you is this: You say the drug is working for you, yet you've been talking with your doctor about totally cutting it out of your treatment program. Every time you've tried to do this in the past, your pain levels have shot through the roof again. Doesn't that tell you something? Instead of cutting the drugs completely out of your treatment program, maybe it makes more sense to keep doing what you've been doing: work with your doctor to oversee your dose level and to make sure you don't start taking more and more of the drug. You mention how, right now, you've run into situations where you've had terrible pain days and ended up taking two or three extra pain pills, meaning you ran out of your script earlier than you should have. Now, that kind of behavior CAN be a red flag that you are starting to become too dependent on the drug. However, it can also mean something completely different: Perhaps you just haven't found the dosage level that works best for you, that is, the level that adequately controls your pain and does so well enough that you don't feel the urge to take two or three extra pills on "bad" days. I know that's what happened with me, and honestly, it's to be expected when you start taking opioids. In fact, a responsible doctor will tell you from the start that the goal is to start at the lowest dose possible and then from there, increase the dosage as needed until you reach the point where you feel your pain is under control. When I started taking oxy, after the first three months I was still in a great deal of pain, so I talked to my doctor and we bumped the dose up one level. That's all it took for me--after that, I only needed to up my dosage one more time over the next 10-plus years.

When you do approach your pain management in this way, there is always a chance that your pain is so severe (or your body does not react well to the pain meds) that you might never reach a dosage level that provides as much pain relief as you were hoping for. Again, this is where a responsible doctor comes into play, as your doctor will know when he's reached the point where he can no longer increase your dosage and remain at a safe level. If that happens, options include trying another med, or, unfortunately, realizing that opioid meds do not work well for you and thus perhaps should not be part of your treatment regimen. Based on what you've said here, that certainly does not seem to be the case, as it sounds like you have definitely received relief from the meds.

To wrap things up, I would just say that perhaps you need to reconsider your plan to totally cut the oxy out of your treatment plan. If there are things going on that you didn't feel comfortable mentioning here--for example, perhaps the meds are impairing your mental abilities and making it dangerous to perform your type of work, which I could definitely seen happening--then I can certainly understand why you want to stop taking them and I would encourage you to do just that. However, IF the meds ARE working for you without any severe side effects, and IF you feel like your pain would be under good control if you could just take a slightly higher dose of the oxy, then I do think you should reconsider your decision to stop taking it. Talk to your doctor openly and tell him how well the med can reduce your pain, and explain that you think if you can just work together to find the right dosage level, the med could be an important tool for your pain management. Let your doc know that you're very willing to see a pain management specialist to explore other avenues for pain relief--this will send a clear signal to your doc that you are not in ANY way simply seeking a way to get your hands on more and more oxy. (It sounds as if you do have a good relationship with your rheumy, which is SO important when it comes to pain meds.)

Anyhow, I hope all this made sense and gave you perhaps another perspective on how oxy might not be a bad drug for you after all. Feel free to send me a private message here at KA if you want to talk about this further.

Good luck,

Brad