Tag Archives: Medication

Life Tweaks

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I’ve tweaked a few things about my life lately that seem to be helping. First, sweetie and I have put some more effort into our meals. I’m pretty good at planning well-rounded meals, figuring out when things need to be defrosted and making shopping lists. My sweetie is not so good at all that, but can do a lot of the standing and stirring or chopping that takes me forever and makes me hurt, so we have become more team-oriented and are eating better, which makes everyone feel better and lets us save time by eating leftovers instead of figuring out something to throw together at the last minute.

We also scheduled time to spend together during my best time of day, which happens to be around 2pm. By the time sweetie gets home from work, my mental and social capabilities are usually pretty adversely affected by my pain level. While I do get to feeling pretty desperate for non-canine social contact, by the time we’ve taken care of food and such necessities, many evenings I just want to disappear in a book or TV show. Getting to eat leftovers for dinner helps with this, but it’s sad that sweetie misses the parts of the day where I can think and interact without it being so much work. So we’ve decided to try to schedule occasional “lunch dates” on days he can split up his work shift and spend time together that is more enjoyable. Our first one was this week and was very nice–I feel like we’re much better caught-up than we have been lately, and that I was much more able to be fully present for our conversation.

I’m finding it’s really important to think creatively about what can be adjusted to make life with CRPS work better. The timing of when to sleep, take medications, spend social time, prepare food, all that can be very flexible when you really think on it. While I do keep a pretty regular schedule, because I find I sleep better and thus have less pain when I do, if the timing of something is not really working, I can often find ways to adjust my schedule so that things work better. An hourly pain journal was really helpful when I first started with this, but now I find I can get a pretty good idea of my patterns without one, although if I needed to make a drastic change I might need to do the journal again to make sure I get the results I’m looking for. With Pain Brain, it’s usually better to trust important things to paper or the computer than my memory!

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Spotlight on Supplements: NAC

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I’ve decided to break down my supplements post, as it’s been hanging over my head feeling like too much work to get started on for way too long now. So I’m going to do a Spotlight on Supplements feature every so often and just introduce one supplement at a time. Remember that I am not a medical professional and am not qualified to give advice on supplements, I’m just sharing my research and personal experience with you. Talk with your doctor if you want to change what you’re taking, over-the-counter or not.

NAC, or N-Acetyl Cysteine, is a new addition to my mound of supplements I take to help with my CRPS. It’s a derivative

Schematic of the metabolism of acetaminophen (...

Schematic of the metabolism of acetaminophen (paracetamol) by the hepatocyte. (Photo credit: Wikipedia)

of L-Cysteine, an amino acid used by the liver to help break down toxins. NAC specifically is used to bind with the toxic by-products of acetaminophen (Tylenol) that occur as the liver breaks down the drug. This is important for pain patients because we often are taking a high amount of acetaminophen as part of our medications–common prescriptions of both hydrocodone (Vicodin) and oxycodone (Percocet) contain high levels of acetaminophen.

The acetaminophen in these drugs is present for two reasons. First, opioids are more effective at pain control when combined with a little acetaminophen. Second, the acetaminophen is present as a not-very-well-thought-out deterrent to abuse of opioid prescription medications, as acetaminophen in too-large doses causes liver damage. Because this is a punitive system, it merely serves to make people who take too many of these pills very ill, eventually. Not the best deterrent, to make a sick person (addict) sicker (liver damage) for being sick, but what can I say, our society’s treatment of drug addiction is inhumane and I find it sickening. See previous posts for more on that.

However, many people have been prescribed these kinds of combination pills for breakthrough pain with an as-needed label. For instance, I had one prescription that was labeled, “Take 1-2 every 6 hours as needed.” Sounds great, except my new doctor pointed out that the maximum of 8 pills a day, which was what I was needing at that time, was significantly over the safe maximum daily dose of acetaminophen, which is 3000mg/day. (New doctor=better than old doctor! He changed my prescription to a better ratio for me.) Even at the safe maximum, it can be hard for the liver to keep up with processing all that acetaminophen without using up the necessary amino acids.

Another factor is the typical diet of a pain patient: we’re not cooking ourselves labor-intensive home-cooked meals so much as trying to eat as best as we can with the energy we have to spend on our food. Some days, this is a well-rounded diet. On more difficult days, TV dinners and other quick fixes are more the norm. This makes supplements even more important for us, since we are not fully in control of our diets.

NAC supplements could be helpful to anyone who takes a regular amount of acetaminophen every day, and that includes many of us with CRPS or other pain conditions.

If you think my Spotlight on Supplements feature is a good idea, or a bad idea, or if you have any requests for specific supplements for me to cover, tell me what you think in the comments!

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A Day of Arguing with Myself

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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.

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Life After Morphine

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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.

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What Is It Like?

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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!

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