Tag Archives: Physical dependence

A Day of Arguing with Myself

Standard

It’s only midday, and already I’m sick of arguing with myself. I just had to look up the rules for capitalization in titles because I couldn’t remember if I should capitalize “with” or not, and it was looking like something else I could spin my head around indefinitely. Thank goodness for Google.

My major arguments this morning have been on two subjects. First, I woke up feeling not-great and not-miserable.

[Side Note: If you don’t have chronic pain, and you woke up feeling like I woke up feeling this morning, you would probably call in to work and/or get a loved one to take you to the hospital, but my definitions of not-miserable have undergone a radical shift in the past few years. You’d be amazed at what a person can be happy to live with after enough practice. I don’t say this to make you feel sorry for me, or bad for complaining about your own stuff. I actually feel–I guess you could say that I feel reluctantly honored that the universe has bestowed this lesson of what I am capable of getting out of life upon me. I’ve been able to pare away some of the fluff of existence and get down to some of the more important things, and learn to not get as worked up about some of the less important things. I can’t say that I’m any happier than I used to be, although perhaps that will come. I can say I’m not as unhappy and I feel like my life has more reality to it, even if I do struggle with my sense of purpose at times. Get back to me in a few more years and perhaps I’ll be able to make more sense out of this than I can at the moment. =-)]

So my day began with what has become The Consuming Question lately–how much pain medicine should I take? As you may remember, I recently tapered off of morphine, started taking vicodin as a maintenance painreliever instead of a breakthrough painreliever in order to cope with the pain of coming off the morphine, and then began to taper off of the vicodin. This is not a function of addiction, by the way, just a function of the way one’s body adapts to having high levels of opioid medications in one’s system, and while I am blessed to not feel the need that an addict feels without his or her substance, the pain of being deficient in opioids when one’s body has added too many opioid receptors (also known as withdrawal) is bad enough. Honestly, I have no idea how an addict ever manages to quit.

Anyway, I had agonizingly inched my pain reliever levels down to four half-pills (of an extra-strength dosage) by the end

English: Vicodin tablets Italiano: Pillole di ...

of the MLK 3-day weekend. Since I had gotten stuck at five whole pills for about five weeks, this is encouraging, but I really want to have a chance for my body to get accustomed to ZERO added opioids–that way, when I do have a pain flare or a bad day, taking a vicodin will help a lot instead of barely at all. So this morning when I felt not-miserable, I thought, “Hey, maybe I can just stop taking all my pills and be done with this in about 3 days!”

Of course, I’ve tried that before, and it’s never worked–inevitably, if I drop my dosage too much, I end up getting a CRPS full-body flare from the withdrawal pain, and having to bounce back to an increased dosage just to manage the flare, generally always settling back to exactly where I was before. But it’s just so tempting to try and get it all done with so I don’t have to keep inching down the dose, dealing with the withdrawal pain for 3-5 days, not being up to do much of anything for quite some time after that, and then doing it again. I’ve been at this for about 4 months now. It sucks. I am ready to get to the part where I get to have some good days, and can effectively treat the bad days. I’m past ready.

So the morning was spent getting more and more painful, until midday when I was about to be down two halves instead of just the first one and I decided if I skipped the second as well, I’d never make it to my early evening appointment. So–I may be able to get down to three halves without too much trouble, or I may have to bounce back to four, but no cold turkeys–or even moderately chilled turkeys–for this cat today, and possibly a wasted morning. Ah, well.

The other subject on my mind for debate this morning was this Coursera class I’m signed up for. It’s on fantasy and science fiction and looks really interesting, but it requires a novel worth of reading and an essay every week. I went for it in the first place because even if I quit or decide not to do the homework or whatever, there won’t be any negative consequences–the courses are free, and if you don’t pass you just don’t get the Certificate of Completion (which doesn’t count for a whole lot anyway–it isn’t college credit or anything). But not having much to lose, while it did make it easy for me sign up for the course, also makes it easier to quit, and I think about quitting daily. I’d like to prove to myself that I can still accomplish something like this, despite my disability. But I also know that this might not be the right time to do it, or the right level at which to start (there are lighter-workload classes on the site). At the moment, I haven’t quit yet. But I feel like it’s going to be up in the air for the 11 weeks of the course, and all the deliberating whether I should give up or not is already a bit exhausting.

I’ve had similar thoughts about this blog, to be honest. I’m kind of an expert at starting projects and then wandering off to something else without finishing them. But the other bloggers on my reading list and the bloggers and non-bloggers who read Attempting Perfection are really important to me. My blog makes me feel like I’m making a contribution to the world, and while I may not be able to be as consistent about posting as I would prefer, this is something that is flexible enough that I can do it, disabled or not. And I still have things to get out there about pain, life with pain, and what we can do about it.

So the blog, I’m sticking with for this year. My little pipeline into the bigger world. And the rest I’ll just have to take one day at a time–just like the rest of my life. Keep on keeping on, my friends! See you soon.

Enhanced by Zemanta

Life After Morphine

Standard
Cover of "Pain: The Science of Suffering&...

Cover of Pain: The Science of Suffering

Things have been a little disappointing lately. You see, a couple months ago, I decided I was starting to feel good enough that I could afford to remove morphine from my daily medications. So I came up with a plan to taper off of it with my doctor, since I have been taking it long enough for my body to depend on having a lot of opioids in my system and therefore would feel withdrawal when it was taken away. Tapering makes the withdrawal less bad than stopping it all completely, which is so painful it creates unnecessary health risks. I have spent the last two months slowly and agonizingly reducing my dose, living for the day when all the withdrawals would be over and my body could recover and feel healthier than ever before, without the side effects of morphine and with effective breakthrough medication for pain flares..

If I had been thinking, I could have predicted the situation in which I am finding myself. But I wasn’t thinking critically, so much as hopefully (and, sometimes, desperately) about the end of my morphine taper. I think that part of me realized that things would take some time to level out, and I would need to recover from all that pain and stress from putting myself through withdrawals. But I had just a touch of rose-tinted glasses on about my morphine taper. I think I needed to have that hope that things would be better as soon as I got rid of all that morphine in my system.

The self-critical part of me speaks up to say that it COULD have been all sunshine and roses. If only I hadn’t taken vicodin to cope with the withdrawal pain. If only I’d been stronger-willed and stuck it out without breakthrough medication. But you know what? The smart part of me knows that that is a load of horse manure.

Pain management isn’t just about suffering. Pain is only good for us in small doses, in response to discreet events. CRPS is pain gone wrong. Our society has some funny ideas about pain. We seem to believe that experiencing pain makes us better in some way. Stronger, or stronger-willed. It builds character. It is something that we can fight against, and a pure and good person would be able to handle pain without any drugs. Horse manure, I tell you, as I tell myself.

See, they’ve done some studies on this. And it turns out that chronic pain makes your body heal slower. It raises your blood pressure and your heart rate, making you more prone to cardiac problems. It fills your body with stress hormones that reroute the things your body needs to be doing to live longer to put it in fight or flight mode so it can survive an emergency–but it isn’t an emergency. Chronic pain is bad for you, and no beneficial effects of chronic pain have been found.

(Want to know more about this? Read the book Pain: The Science of Suffering by Patrick Wall)

So I took my vicodin, another opioid medication, to cope with the pain that originated from morphine withdrawals but continued with my CRPS (which, as I’ve said before, loves a party). Despite my cultural training, it was the right choice. Now, I’m done with morphine. Forever, I hope. But I’m still taking as many vicodin as my label lets me.

At first, I tried to remove one pill a day. Guess what? Withdrawal agony, of course. But the great thing about vicodin is that you can cut the pills into pieces–morphine is slow-release, and when you cut them you mess up the coating and you get too much early and too little later. It’s okay to cut vicodin, so I tried taking a half away, and finally went down by a quarter of a pill.

I’m finally getting some of my energy back! I still am not feeling all that great the majority of the time, and I think until I get all this opioid medication out of my system for a little while and then get myself more active again, I won’t be feeling all that great. But I cleaned my car, which I’ve needed to do for three or more months. I’m doing training sessions with the dogs again. I folded some laundry. All in the last few days. Things are looking up.

While I’m not skipping through fields of daisies at the moment, this  is a huge improvement over the last couple months. It’s a little disappointing that there is no skipping quite yet, but it’s a perfectly reasonable place to be, cleaning my car and folding laundry. Skipping isn’t entirely off the table, either. Maybe next month.

Enhanced by Zemanta

What Is It Like?

Standard

I was asked recently what morphine withdrawal feels like. When I am experiencing pain from CRPS or, like recently, the physical withdrawal symptoms that come with tapering off of morphine, it can be so difficult to try to imagine what it’s like to have never felt something like this so that I can explain it properly. I think of things like shards of glass embedded in all my joints, acid slowly eating through my bones, the hottest hot pepper burning into the skin around my ankle.

All these abstract metaphors made me realize that I’ve not yet described how I feel when I’m in pain on my blog, and how difficult those descriptions are. It made me want to describe a little better how I’ve been feeling lately.

Today I had a hard time getting up. I had the dogs trained to my schedule, with their first walk around 11 or noon and their second at 8 or 9 pm. But over the last week when I was having such bad days from my morphine taper that my sweetie was walking them, they became accustomed to getting up a bit earlier, and today they decided they just couldn’t wait. I am usually awake by 7, but I normally have a chance to get a little caffeine in me and let my body catch up to my brain before I get moving. Today our schedule was wonky and it felt like my arms and legs were full of sand. It wasn’t that I was sleepy, but like I couldn’t get the motor running fast enough to get moving. I got myself downstairs for food and coffee, but the dogs still had to wait another hour and a half for their walk before I felt like I could do it.

Before I got CRPS, the closest experience I’d had was the aches and pains of a very bad flu, where all your bones and muscles hurt from the fever. That’s still not all that close, although if you take that pain, spread it out a bit more so it occupies more of your body tissue, make it sharper, give it some hot-pepper kind of heat, and turn the level of pain dial up more than you previously believed possible, you get closer to what a CRPS full-body flare feels like to me. The opioid withdrawal symptoms add a spiky sharp jabbing, cutting feeling to each joint in the body. CRPS joins in over any pain–withdrawals, stubbed toes, healing wrist–it gleefully joins in for a pain party with any excuse. It lives in my ankle and foot, at times seeming to hibernate down to just a boring, nagging, drilling ache in the tendons and bones of the top and outside of my foot, muscle soreness on the outside of my lower leg, and heat of the skin on my ankle. That is the best it gets, and it never stops, sometimes bringing me to the point that I will bang my knuckles on something just to pull my attention away from that never-ending ache in my ankle, because with a flash of new pain I get a moment of not noticing the old.

When the CRPS wakes up, because of other pain, or because of emotion, or lack of sleep, or myriad other things, the first thing to hurt is my right hip, since it makes my leg muscles tense and tighten and pulls on that side of my body.  Then the heat seems to spread, radiating from my ankle, and at some point of no return, as the pain increases and increases in intensity, my elbows and knees begin to hurt and then the full-body flare breaks like a wave over the rest of me. It can be impossible to stay silent when the pain is at its worst, as much as I would wish to be a better stoic, and am embarrassed by the whimpers, groans, or tears that may happen despite my best efforts. It isn’t a call for attention, just a failure to keep it inside.

My maintenance medications turn down the dial. Every success with a new medication or dosage has felt like someone found my volume dial for the pain and turned the knob down a notch or sometimes even a few notches. The goal is not to feel no pain–while that would be wonderful, it isn’t necessarily realistic, and luckily, it isn’t what I need to enjoy my life. My goal, instead, is to have may pain controlled. Pain patients and doctors use that word a lot, “controlled.” To me, my pain is controlled if I can concentrate on something else more than how much my ankle hurts, and if I have something I can do to avert a full-body flare. It means that I have choices with what I do with my time and when I do it–when the pain is in control, my choices are much more limited.

I’m looking forward to one week from now. In that time, I will have stopped taking that last bit of daily morphine, and had time to go through the withdrawals from doing so. I should be starting to get some energy back, just a little, and will know that as my body continues to recover from the painful seven weeks it has had, it will feel better and better. It’s been a long and difficult time to get myself off of this medication. It will be wonderful to get back into feeling like I’m making progress in my life, instead of just waiting and doing my best to just outlast the reactions of my body to the lack of this medicine. I’m glad I had it, because it let me live more comfortably, and I’m even gladder I don’t have to take it any more. I’m not entirely sure how my body will do without it, but I’m very hopeful that it will do well, maybe even as well as I was doing when I decided I didn’t need it any more.  At the very least, I will have no more withdrawals to look forward to, and that is a wonderful thing.

Wish me luck!

Enhanced by Zemanta

Opioid Pain Relievers and Chronic Pain

Standard

English: Poppies.

So I’ve been having such great days since I increased my Lyrica dosage that I decided it was time to taper off of the slow-release opioid in my daily regime, and my doctor was happy to agree. The advantages to this are that the body develops tolerance to opioids pretty quickly, while at the same time developing physical dependence on having the opioids in the system. Getting rid of the constant level of opioids means that when I need medication for breakthrough pain, it will be much more effective. In addition, opioids can actually cause increased pain sensitivity over time, and I don’t want to have that problem. Please note that there is a HUGE difference between dependence on a medication and addiction to it. It’s amazing how many doctors themselves don’t have this straight, so lets talk about this for a second.

English: 2D structure of anticonvulsive drug p...

English: 2D structure of anticonvulsive drug pregabalin (Lyrica) (Photo credit: Wikipedia)

Dependence is a biochemical phenomenon. The body gets so used to having a certain level of a compound that it reacts adversely when the level of compound is reduced. This is called withdrawal, and for opioids, involves a lot of extra pain and flulike symptoms among other things. In the case of opioids, this is because once they’ve been in the body messing with the nerve function for a while, the body actually increases the pain neurotransmitters so that the nerves still function how they used to despite the opioids being there getting in the way (tolerance). Take away the opioids, and all those extra pain signals start to get through–the body eventually readjusts, but there’s lots of extra pain in the meantime. That’s withdrawal.

Addiction, on the other hand, is something else. Addiction is a psychological disease–but that still makes it a medical condition, so the current trend of making addicts into criminals and Bad People instead of people in need of help for their disease isn’t going to solve the problem. Addiction to a substance involves taking the substance for the psychological feelings (the high) one gets from it. Addiction almost always requires increasing amounts of whatever the sufferer is addicted to. And addiction, as a psychological dysfunction, outranks the rest of a person’s life–the sufferer will put the substance or activity before friends, family, employment, and their own health and survival. This is where the vilifying of those with the disease of addiction comes in–sufferers will do bad things–lying, stealing,etc–to their loved ones, themselves, and anyone else who stands between them and what they are addicted to. Addiction hurts everyone around the sufferer, and, as with many psychological diseases, if the subject refuses to get the help they need to treat their disease, there is nothing anyone else can do to make them stop their harmful behaviours.

Pain patients are in a lot of trouble right now because people don’t understand the difference between dependence and addiction. Dependence isn’t ideal, but it is a medically acceptable side affect of a necessary medication. When doctors don’t understand this, pain patients are denied treatment for their conditions because the doctor doesn’t want to help a patient’s addiction. When voters don’t understand this, we end up with stricter and stricter regulations for doctors and legitimate pain patients making it difficult or impossible for us to get our needed medications, while people who are addicted ignore the regulations and obtain drugs illegally, however they can get them.

I’ve had an entire clinic refuse take me as a regular patient because I take opioids regularly. They didn’t want to risk the scrutiny involved in prescribing these medications long-term. I’ve had to substitute one medication for another on no notice when every pharmacy ran out of the medication I usually take at the same time. I have to be seen in an appointment by my doctor to pick up my written prescription, drop it off, and pick up the medication from the pharmacy in person every single month. If I don’t want to miss a dose, I have to be there the exact day I run out, because I’m not allowed to fill the prescription even one day early. If I’m sick or having a pain flare or having surgery that day (that happened once), it doesn’t matter–if I want my medication I can’t miss an appointment or send someone else to the pharmacy. For patients in severe pain, the kinds of patients who need these medications, this needing to be somewhere at the exact right time can be extremely challenging if not impossible. While I don’t want to help people suffering from addiction to have easier access to their substances any more than the next person, I hate that the law and many physicians treat me like an addict when I’m not, and I feel that there ought to be a better way to deal with the problem of addiction than the way we’re going right now.

Politics aside, and back to the original topic, I’m tapering off of my slow-release opioid. I’m not enjoying it. I’ve barely dropped the dose (I’m taking one sixth less than I was a week ago) but this is the second day in a row I’m having a full-body pain flare. And it feels counterproductive to take my breakthrough pain medications, which are opioids, to help me in reducing my opioid level in my body–but when the pain gets too bad, I’m risking all kinds of other health problems by having untreated pain–adrenals, cardiac, and brain are all negatively affected by untreated pain. So I’m trying to strike a balance, and in the meanwhile, I’m stuck lying down for the second day in a row. This is going to be a long six weeks, but it will be worth it if I can get to just taking the opioids for breakthrough pain instead of every day. There’s a possibility that the non-withdrawal pain will return below a certain dosage, but even then less is better than more. Wish me luck, everyone!

Enhanced by Zemanta