Short Little Update

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Just a quick note for now: I had some of my hormone levels checked and started taking some supplements to help bring them back into balance. However, the new supplements really messed with my digestion, and so I spent some time trying to let my body adjust to them. It was adjusting slowly, but I decided whichever it is of the new supplements I’m taking is just too much for me, and now I’m off the newest group of supplements until I figure out which it is that bothers me. It’s been a couple days with my guts working like they should and I feel GOBS better. Digestion has such a huge impact on energy levels!

More later, as I play catch-up on all those little things, like the blog, that tend to get put on the back burner when things are extra-difficult!

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Spotlight on Supplements: Chondroitin, Glucosamine and MSM

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I’m covering these three supplements in the same post because they are often combined into a single pill, which is how I take them. Again, I’m not a doctor and you should discuss all supplements with your physician.

Chondroitin sulfate is a component of cartilage, and is often sourced from cattle cartilage.

SIDE NOTE: As a former aquarist, I must beg you not to take chondroitin sourced from or combined with shark cartilage, as it is really hard on shark populations, which need our protection–they have it hard enough; we have overfished a lot of their food sources. Back to our regularly scheduled program.

Glucosamine is most often taken as glucosamine sulfate, but can also be found as glucosamine hydrochloride, or N-acetyl glucosamine. It is another building block of cartilage, and is usually sourced from shellfish shells or synthesized.  Taking chondroitin and glucosamine is thought to support the body’s maintenance of the cartilage tissues in the joints, but the latest research on a combination of chondroitin and glucosamine is not very encouraging as far as pain relief goes. It is most often recommended to sufferers of osteoarthritis, but in the latest study showed the combo to have only a mild benefit to only those in the most severe pain, and that group was so small it was hard to tell if the results were statistically significant.

MSM, or Methlysulfonylmethane, is recommended more generally for numerous types of pain. This remedy is solidly in the alternative medicine camp, as there is not much science to back it up. From my research, MSM is recommended mostly because of a single book written by two doctors, which looks a lot like another one of those “natural miracle cure” claims that so often are set up simply to prey on people in pain who are desperate for help.

It is possible that these supplements could serve a more of a preventative purpose, ensuring that cartilage breakdown does not happen because of deficiencies in the diet. I recall mention of a study in dogs in which similar supplements looked like they helped prevent arthritis if it was taken starting young, although I have no idea of the study’s scientific validity.

The other disturbing news turned up as I researched for this blog post was that the supplements that claim to contain chondroitin and glucosamine have been tested with widely varying results–some of the pills sold in stores turned out not to have any of one or the other compound, or the amount from batch to batch varied although the label stayed the same.

After what I’ve learned about these three compounds, I’ll probably take them off my list of supplements I’m currently taking. The combination of “they probably don’t do much” with “you can’t be sure you’re actually taking any” makes me think that I could be spending my money more wisely than on any more bottles of these.

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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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