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Post by IdaB on Jan 27, 2009 20:15:02 GMT -6
Hi - this topic came up in tonight's conference call and is - understandably - a common topic around here. I'm curious about people's specific responses to opiate-based pain medications, and particularly at different stages of their recovery? For me, I don't think I'd ever had opiates at all until post-surgery, at which time I was on the 'usual' oxycontin and hydrocodone. (After the morphine drip). The pills made me nauseous - or something did - for a few days, but then that calmed down and they really helped reduce the pain. I very rarely felt 'high' from them, and when I did that was usually a sign that it was time to taper them down. I stayed on them for a couple of years, just gradually reducing my dosage till I wasn't on them (though I stayed on other types of meds) for several years. Last year I really hurt my back again, and among other things I went back onto hydrocodode (generic vicodin). It really helps me - I take 3 per 24 hours (morning, afternoon, and night). I feel completely lucid (well, as much as I ever do ), am fine to drive, work, etc. I have never felt the need to increase the dosages - no 'tolerance' buildup, and never felt like I had a psychological need for them. I've recently started reducing them again, because I've been ramping up yoga and some other things to help with pain. So I do hope I'm able to stop them altogether again, but I'm trying to be patient with myself about it and do it gradually. (When I do decrease them now, I'm in a little bit more pain, but I don't seem to have any 'withdrawal' symptoms or other problems). Anyway, I'm certainly not encouraging anyone to try these types of medications if they cause you side effects or other problems, but I just thought I'd say that - for me personally, I haven't had the problems that people often associate with opioid drugs. I've also got a doctor right now who is understanding (and mostly just seems to think I'm too impatient to get off of them!) I think everyone has different responses to different medications, so a doctor who is willing to work with you and find what words for you is the best thing in the world. I'm actually a strong believer in trying non-drug methods of pain relief and keeping medication to a minimum, but I thought I should share that this type of drug has really been helpful to me at different times, including now. Without it I couldn't have worked this last year, or done so many other things I've enjoyed. I'm also curious about other people's experiences - good or bad? It was great hearing everyone on the call tonight - thanks especially to those who shared their story for the first time! - Ida
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Post by billanschell on Jan 28, 2009 12:12:29 GMT -6
Hi, Ida:
I've described before on this site my "every other day" phenomenon, where my discomfort for some reason alternates between good and bad days like clockwork. On my bad days, I take a hydrocodone tablet; just one.
Does it reduce the pain? A little. Does it make me feel better? Quite a bit so. It's the euphoric effect, mainly, that works for me. It gives me a little extra energy and motivates me through a day where I'd otherwise be fixated on my pain. While that may sound a little like recreational drug use, I've come to terms with the fact that there's nothing wrong with finding the formula that best helps me handle my symptoms.
Because it's the psychological as much as physical effect that helps me, I've capped myself at a maximum of one tablet, and only on the bad days. I've never been addicted to anything, but I can see how I could become addicted to this, and I absolutely won't let that happen.
I also don't allow myself to take it if I have a performance or recording session of any consequence. I feel lucid when I take it, but don't trust myself that I'm exactly the same person.
So for me, with all that in mind, I find it very helpful, and there are no significant side effects.
--Bill
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Post by hambone on Jan 29, 2009 20:16:43 GMT -6
HEY IDA, YOUR QUERRY CAME AT A PERFECT TIME FOR ME. I HAVE MY SURGEON WHO THINKS IT'S PAST TIME TO QUIT THE OPIODES. MY PAIN DOCTOR WANTS TO UP MY DOSES. I TOTALLY UNDERSATND YOUR CONFUSSION. I'M ONE YEAR OUT AND IM ON OXY-CONTIN, A SMALL DOSE BUT STILL ON NARCOTICS. I I HAVE COME TO REALIZE FOR THE FIRST TIME IN MY POST SURGURY LIFE THAT I AM IN CONRTOL. THEY WRITE THE MED SCRIPPS. I DON,T HAVE TO USE THEM. I HAVE PUT MYSELF ON A 1 MONTH PROGRAM TO CLEAR MY HEAD AND SEE WHERE I AM GOING. YOUR POST CAME AT A PERFECT TIME FOR ME AND AM DEEPLY THANKFUL. THIS SITE AND PEOPLE LIKE YOU MAKE UNDERSTANDING WORTH MY TIME. THANK YOU IDA,
RON
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Post by betty on Jan 29, 2009 21:32:35 GMT -6
Hi guys, Well for me I'm 9 weeks out from surgery. I had the typical drugs you mentioned post surgery.They did help pain somewhat but like Bill said the psychological effect helped more. When I had been on them about 2 weeks is when I began having unpleasant reactions.I think I had an accumulative reaction. I had all kinds of symptoms like nausea,dizziness, headache, body rash (some of this was from steroids). I have posted before I made the choice to go off these meds because I have such a fear of nausea. I just hate it and the fear of vomiting freaks me out. I kept trying different $50 meds and after a day or two would stop them. I was tired of feeling poorly and wasting money. I then started extra strength tylenol but really had little relief. Then I decided I'll do natural things which had to be at least as good as the tylenol. Now I take Zyflamend (an anti inflamatory), a few other natural things and I do my PT. I also use Arnicare as a topical and I just started DMSO 70% as a topical. I have some very bad days especially if after PT I do too much (like tonight!) Too much is like going to the store and a little house cleaning and meal prep. This sure isn't easy. We all have to do what works for us mentally and physically. Betty
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Post by laughingbuddha on Jan 30, 2009 1:45:38 GMT -6
I've written a few odes to pain and oxycodone; I'll modestly share one.
Bill A. promises, sort of/maybe, to furnish a jazzier background score-- a trio of kazoo, cow bell and organ grinder.
The lyrics, of course, are my mine all mine, written in the the daze of intercontinental jet lag, respiratory infection, normal/abnormal spinal cord injury pain, and while rereading Nietzsche (quite a combination in and of itself).
If you try this in the shower: it is sung in the key of E# (aug 4) in saucy 5/4 time, except the chorus which runs in a hard, Mingus 6/8,
a one, a two, a one, two, three, four, five:
Nothing like a hit of oxycodone to remove the pale of pain Replacing it with a slight fog, they all call it this. Why? Are so many so stingy with this drug? It, of all, clears space for work, Life, the exercise of will, the play of life tag Only should we know better: I’ll try mary jane Illegal but available even on down days Good lord ain’t it ironic? I thought I’d keep the opiates As a tonic of last resort, a useful six shooter in my bag Now it saves my life! gives intensity, love, engagement Will—call it what you will. But alas… alas… alas I can hardly imagine the difficulty of explaining my needs to the authorities
But it doesn’t help with the writing of poetry. Or maybe it does, if only insofar as it reduces the need for that analgesic…
(chorus)
Pain is the master and enforcer of comfort Every movement enters an equation of cost/benefit But I’m a lazy calculator, after awhile, like a slave, I come to respect the master even when he is not there.
Who among us really knows pain? Everyday? Management, scales, numbers Can someone say: off the charts? I always answer seven Even though, temporarily, it feels good to say that number. To say the number seven, like a gambler at a craps table Temporarily, I hope it really will appear as seven, and therefore, Disappear; but it doesn’t appear as a number It simply resides here and there (in a foot, a tricept, across my chest, in my jaw, on the skin, in my finger bones or penis), depending on the hour, The drugs taken, the amount of sleep it is owed, Perhaps even the barometric pressure!
Pain is the master and enforcer of comfort Every movement enters an equation of cost/benefit But I’m a lazy calculator, after awhile, like a slave, I come to respect the master even when he is not there.
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Post by laughingbuddha on Feb 27, 2009 8:42:41 GMT -6
Analytic thoughts on pain management
I. three primary categories of pain relief and one miscellaneous one:
A. Rest
B. Exercise
C. Pain medications, including opiates
D. hot baths, good food, massage, sex
II. The benefits and liabilities of each
A. Rest
1. Benefits a. it seems to calm the nerves b. it doesn't take too much effort
2. Liabilities a. for many it is expensive (people often must work to live) b. for many it is difficult (their nerves are so wrecked they can't relax) c. it is effectively like being dead most of the day (think of that!)
B. Exercise
1. Benefits a. the endorphins are all natural and effective b. it makes you look and breathe better c. you'll have more stamina and better balance d. your doctor will approve and e. people will admire your pluck in the face of such adversity
2. Liabilities a. we spinal cord tumor sufferers get injured easily because i. our systems are so out of kilter that nagging injuries in the hips, ankles and other joints can cripple us and return our dedicated effort to us as more pain ii. most of us are getting well into our forties, and age/entropy makes the whole attempt doubly difficult iii. some of us simply can't do much exercise, no matter how much we would like, for reasons related to our particular spinal cord injuries and our pre-existing physical and social predilections and practices
C. Meds (specifically opiates)
1. Benefits a. Stops pain signals from entering the brain; in other words one can say "nevermind" to all that is aching, throbbing, tingling, pinching, wheezing, burning... b. Allows one to carry on in work/play c. Adds an element of euphoria to an often dreary existence d. Allows one to get out of the "stuck" position that pain puts one into; by freeing the mind, they free the body (see the above song's chorus)
2. Liabilities a. They are addictive, so be careful. In particular, when you "come down" from the high, your pains become more pronounced and even brutal than usual; so, you'll crave another hit. b. People who have never experienced chronic pain will not understand your usage. i. America, at least the powerful in America, tend to retain a Puritanical streak toward pain as a kind of virtue. ii. Rush Limbaugh gave them a bad name 3. They affect one's cognitive abilities; i.e., they make one loopy, like Snoopy!
D. Miscellaneous
1. Benefits a. Hot baths do wonders for diminishing the power of post-surgical muscle spasms. b. Good food is enchanting, delightful, centering, and enriching-- enough said. c. Massage reduces muscle tensions, and the human touch is wonderful. d. Sex knocks one out, makes one feel beautiful, clears tensions and bathes one in universal luv.
2. Liabilities. a. hot baths: not good for people will burning sensations in the skin b. Good food is also addictive, and one can get fat. c. Massages are expensive for many. d. Sex is exhausting and, for aging spinal cord tumor sufferers, not always easy-- in particular, it is not so easy to do with kids around because you make a lot of embarrassing noises....
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Post by IdaB on Mar 3, 2009 17:06:48 GMT -6
LaughingBuddah,
What a thoughtful analysis! I feel the same way about almost everything... the only difference for me being (which is why I started this thread) that I don't seem to have the side effects from being on the opiates (i.e., loopiness), or from coming off them (i.e., withdrawal). I don't usually get the 'good' side effects either (i.e., the psychological 'lift')! I may be the minority in this, but there it is.
I do sometimes encounter something like the 'pain is a virtue' attitude in others, directed at me, which baffles me. I mean, I am actually fairly down on pain medication - I'm always looking for and hoping for ways to reduce it. If/when I am not in pain and therefore able to take no medications, I will be beyond thrilled. But in the meantime, I get very ruffled if anyone acts shocked by the medication I am on. Especially if - as if usually the case - they know me and know that I am generally productive, active, etc. I sometimes want to ask them what good it would do them - or anyone - for me to be incapacitated, or even just less than my best, because I am in pain? I don't understand this at all.
On the rest issue, that is something I am struggling with now too. I know that if I did nothing but rest, I could probably take less (though not no) pain medication. (Even if I do nothing but rest, I'll still have some pain.) But then there's the "dead all day" issue. I guess that if I thought that the imposed rest was temporary, and would enable me to have a better quality of life over the long run, then I would be more open to dramatically scaling back my activities. But I suppose I have very little faith that the 'enforced rest' would be temporary... and I'm not willing to live my whole life at minimum speed.
I think - or hope - that it's a matter of balance. I tend to 'go' to much, so am trying to rest more, but I do still have my life to live and I'm grateful that, at least for now, the medications are helping me live it. It's a work in progress :-).
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Post by laughingbuddha on Mar 7, 2009 13:22:31 GMT -6
Moderator Ida:
Please recall that "loopy like snoopy" is not necessarily a bad thing; for after all, no matter how you may feel about "Linus and Lucy," the primary characters are all suffering from varying degrees of mental illnesses or other problems. E.g., Charlie Brown is a classic depressive; Lucy is a narcissistic careerist; Pig Pen would be under CPS protection-- through no fault of his own.
Loopy Snoopy is sane, dignified, delightful, detached, and amused. We should, no doubt, have it so good.
Cheers!
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Post by laughingbuddha on Mar 12, 2009 8:46:01 GMT -6
Now, in plain English (all spoken slowly and loudly)-- clearly not on oxycodone:
Opiates work wonders. But I better have enough for a daily supply, like IdaB.
They make me feel so good that coming down is a big bummer-- all pain becomes clearer. This is my only addiction.
Without them, it is easy to get stuck-- in a chair in front of this screen, say. I bet yoga is more easily practiced when you're pain managed with them than when you're not. When not on the meds, I feel more tied up in terrible knots.
So, this is a tricky question. I'm looking to book a pain management consultation and get the party line on all this.
My last update, over and out.
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Post by laughingbuddha on Jul 14, 2009 8:41:35 GMT -6
Went to pain management doctor. Two month wait-- not in America they say!
Oh well, she was kind, old, tired. Heard it all. But she listened well and adequately understood my condition and ambivalence toward opiates.
She is unlike the previous specialist I saw in this area who is younger, full of premonitions about living to be 90-- oh what a great victory that would be! Certainly this is part of the prevailing ideology in America, like owning a decked-out house. What it really shows is that you got a good job, good health care, are intelligent enough to care for yourself or find others who are willing to do so, have good genes, and a fair bit of luck. X-doctor (don't want to be sued!) is pretty sure she's got several of these nailed-- drinking her herbal tea with vitamins before entering the office to see me. But I don't think she has much, well, empathy-- unless you join her in her live-darned-long crusade (in this way she is similar to Christianists, who can't imagine heaven without counting YOU in or out...). You might like her, however, for these reasons-- though you might not put it this way. She's also counted as one off Seattle's best doctors. I surrender.
Doc #1 spouted some party lines about exercise, meditation, enjoyment-- but nothing about art, beauty, justice, and quality. But, she is kind. She knows I'm in pain and not a addict. My dosage is low. I'll get some more meds.
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