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Junkie girl or grumpy girl...not sure which is worse.

annalexandria's picture
annalexandria
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Joined: Oct 2011

Sooo...here I am, going off my pain meds for the second time in two years.  I really got nailed by the long-term side effects with the last chemo I did.  Nasty joint and muscle pain that has been going on for over two years now.  I took Vicodin during and for about six months after treatment, and then kicked the stuff with the help of one our forum friends, Abrub.  But I ended up back on it during a trip to Disneyland a few months later (Kids!  Don't go to Disneyland if you want to stay drug-free!).  Those 12 hour days in the park were killer.

I've been on it ever since, and have gotten up to six pills a day in order to maintain some pain relief (and not much either, I have to say, but it did help me to function, do things that are important to me, like hiking.  And opening cans.).

But in the process, I think I've fried my stomach a bit, and things aren't feeling great (unless it's the cancer, of course...won't that be a hoot if I get off the drugs only to find out I'm really going to need them...scan next week, stay tuned), so I decided to try to reduce my intake or go off them again all together.

I've cut out 1.5 pills in the last four days, and just snapped at one of my kids because she had turned the heat on (ok, somewhat legit, it's 65 degrees out and the power company keeps sending us these letters comparing our electrical usage, which is admittedly insane, to our neighbors with the chickens and the solar panels on the roof).

The pain really hasn't gotten any worse, so I'm going to keep on cutting back, see if I can do it (using Abrub's tips again-thank you!).

But if I start to post weird crap on here, you'll know what's going on.  It's just me, seeing bugs on the walls.

Lots o' love from your hopefully-not-a-junkie-anymore pal~AA

jen2012
Posts: 1251
Joined: Aug 2012

Your neighbors keep chickens on their roof?? :)

Sorry AA. Sucks feeling grumpy or in pain. Have you tried acupuncture? Pot?

annalexandria's picture
annalexandria
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which will soon not even be relevant as we will all be smoking weed here in Seattle for FUN.

I actually have been wondering what the social niceties are going to be once it's being sold in stores...do I offer it next to the wine at my dinner parties?  I do have a couple of very conservative relatives who it would be fun to mess with a little (although oddly enough, not my conservative cop brother, who thinks weed is no big deal.  He's too busy busting the meth dealers in our little home town to worry about it).

Anyway, back to using it for medical purposes.  I have tried it for the pain, but find it makes me...well, stoned!  What a surprise.  Oddly enough, the pain pills don't effect me much in that way.

It was, however, kind of fun going to the fancy-pants dispensary, with the specials of the day written on the white board, and the amazing array of products (including pot-infused olive oil) in the deli case.  And the bullet proof windows, and double-plated steel doors.  Can't forget those.

I've also done a little acupuncture, but I have a serious needle phobia for some odd reason.  Probably didn't help that I went to this awesome woman who is highly experienced in the Chinese version, which seems to have as its motto "No Pain, No Gain".  She really seemed to enjoy pounding those suckers in.  Haven't been back.

My other brother says that pain is meant to help you "learn" something, so maybe I just have to work on absorbing whatever lesson the pain has in store for me (or maybe my brother is an idiot who has never been in pain a day in his life).

jen2012
Posts: 1251
Joined: Aug 2012

Seriously that sounds like quite the place - infused olive oil huh? 

My husband has done acupuncture for back pain and more recently for help for neuropathy and it did seem to help - or was coincidence.  I'm not sure I'd want a bunch of little needles stuck in me either.

I don't think I agree with your brother about the pain.  

 

hippiechicks's picture
hippiechicks
Posts: 374
Joined: Sep 2012

Awwww!  I wish I had better advise for you to kick the pain ... but they have all been mentioned ... well, accept for this.  I have heard that if you ingest the MJ it does not give the same "stoned" affect.  Never tried it .. but I am getting close!  I also have been suffering from pretty bad joint and muscle pain for some time now.  I am doing acupuncture, PT and message.  There are still days I can't function ... but it does help.  I won't take the other pain meds  .... yet. 

Just for kicks and giggles ... did your oncologist give you the MJ card?  Mine is not a fan. 

annalexandria's picture
annalexandria
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My oncologist is a gentleman who has probably never smoked a joint in his life.  It's possible that he's never even had a beer.  Seriously kind of a kill-joy.  I asked about getting a "prescription" (used the wrong word), so he was able to say that he had never head of such a thing.  His nurse told me that I should just get some "on the street" (and that's an exact quote).

I ended up getting one from my acupuncturist/naturopath.  I figure she owed me after hammering those needles into me for an hour straight.

RobinKaye
Posts: 93
Joined: Nov 2011

 

You've never had a pot brownie I presume...Cool

annalexandria's picture
annalexandria
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The only challenge I found with the edibles is that it's hard to know how much to eat.  And it takes about an hour to kick in, so after my first nibble, I assumed it wasn't working, had a little more, and then a little more, and pretty soon...bam!  Passed out and drooling on my pillow for four hours.

Totally not nauseated when I woke up though, so there is that.

I think more experimentation may be required to determine the precise dosage. Laughing

traci43's picture
traci43
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A while back one of the threads talked about MJ in pill form.  I think if I get to the point of needing it that's the way I'd do it.  Might help you to determine how many are effective.  Take one wait an hour, take another, wait an hour, etc.  I'd find it hard to stop eating the brownie!

annalexandria's picture
annalexandria
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but I think the pill form isn't truly marijuana...it's just one of the substances in the plant that has been singled out and made into a pill.

One interesting thing I learned when I went to the medical dispensary is that there are numerous strains of mj, each with a different % of these various compounds.  They gave me a chart listing about 30 different strains, and each one had a different effect on the body depending on its make-up.  So they would recommend a strain based on whether you were treating pain, nausea, or what have you.

Anyway, I think the pill doesn't really work in the same way, but if medical mj is not yet legal where you live, then it might be an ok substitute.

It's def a problem that you are only supposed to eat a small piece of the brownie, not the whole thing.

I mean, really, who does that??

hippiechicks's picture
hippiechicks
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LOL .. you are so funny!!! Laughing

annalexandria's picture
annalexandria
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that calling an oncologist a "kill-joy" might not be the best choice of words.

 

Joy1216's picture
Joy1216
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Kill-Joy is definitely not a good choice of words if your name is Joy, like mine is!

RobinKaye
Posts: 93
Joined: Nov 2011

 

double post

LivinginNH's picture
LivinginNH
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Joined: Apr 2010

 

I love that you can keep your sense of humor in the face of pain - you are one special lady my dear.

Oh, and I think it would be a great idea to send your brother to that nice Chinese acupuncturist - tell him it will broaden his senses. 

;) 

annalexandria's picture
annalexandria
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My brother could definitely use a little broadening of his perspective.

A good guy, but a wee bit clueless.

thxmiker's picture
thxmiker
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I am the obsessive compulsive personality. I am terrified of pain killers.  I would tell every one to be afraid of the road more traveled.

 

We are sending our thoughts and prayers for you to find the strength to beat the dragon!

 

Best Always,  mike

annalexandria's picture
annalexandria
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I've done it once, so hopefully I can do it again!  I hope you never need these things.  If you can avoid them, it's certainly for the best.

Chelsea71
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Joined: Sep 2012

You crack me right up AA.  You're one of a kind.

ams5796
Posts: 5
Joined: May 2010

Can I ask, what is Abrub's plan? I've been on and off painkillers myself. I take just one oxycodone (two halfs separate times) a day and seem to have trouble stopping even that one.

annalexandria's picture
annalexandria
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basically it's just to very slowly reduce the dose by small amounts.  I'm taking a lot more than you are, so this is maybe a little easier for me to do.  I'm cutting back by a 1/2 pill about every three days.  It's going to take quite a while, but it's not such a shock to the system.

So maybe with two halves, you could try to break them into quarters, and take one quarter away every few days?  Or maybe you could ask them to make you up some new pills at a lower dosage so it would be easier to do this.  Kind of hard to quarter those little suckers.

I will say that I took oxycodone a few years ago when I was dealing with pretty severe pain from tumor growth, and developed a nasty physical dependency in about two weeks.  I ended up "getting off" of them kind of by accident, as I got very sick and had to go in for emergency surgery.  By the time I came out of the hospital almost 3 weeks later, I no longer was addicted to them.  But I think oxycodone may be harder to quit than Vicodin.  I would suggest talking to your doc if you find it difficult.  I was told that there are various meds they can give to help make the process a little easier.

Good luck!

lilacbrroller's picture
lilacbrroller
Posts: 331
Joined: Jun 2012

I had a former coworker who died in 2011 of MCRC, and when I tried to write to her (email) I got the weirdest answers.  Really trippy. Figured she was zoned out on chemo or something -I didn't take it personally, although we weren't very close so I just backed off.

Well, after she died, I bumped into one of her good friends who gave me the scoop, an explanation for the kooky emails - she was high as a kite! When the chemo didn't work, she opted to spend the last months of her life on medical marijuana, most likely to ease the pain.  That explains a lot!

So I saw your admission and it reminded me of her situation.  

Tongue Out Karin

 

annalexandria's picture
annalexandria
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her confusion may have been partly related to that too.  In the last couple of months before my sister died, she made very little sense, due to a combination of a sh**-ton of pain killers and the effect of the cancer on her body.  In my experience, weed may make you a little silly, or deeply philosophical, or develop a "love the world" approach even if you were the worst curmedgeon ever...but you usually don't get completely confused.  Things do get awfully funny, though, I will say that. Laughing

abrub's picture
abrub
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I just got to this thread.  So sorry you are having such problems again, and hope that after your next scan you have good reason to wean off of painkillers once again.

I'm glad my experience worked for you.  I hated going through it myself - my mind wanted to quit cold turkey, but my body wouldn't let me.  Thus every 8 hours as I took my scheduled pills, I cursed with each one, thrilled that every 3 days I'd get to drop another out of my daily regimen. It was slow, but enabled me to stop the pills without withdrawal symptoms. I've been lucky in that tho I had to go back on the offending pain med (Tramadol) this past year, as it was the only one I could tolerate, my use was sufficiently sporadic that I did not get dependent again.

As for junkie or grumpy - with what we are dealing with, grumpy comes with the territory!  As for junkie - you need to take care of yourself.  Pain management comes first.  The fact that you don't want to take the meds speaks to the fact that you are not a junkie, not doing this just for the high (which, frankly, I never experienced).

I'm here cheering you on!

Alice

annalexandria's picture
annalexandria
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I really appreciated your help the first time around, and I'm sure that it will work again this time.  And I'm passing it on to others, so maybe it will become a forum tradition!

 

janderson1964's picture
janderson1964
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That's tough Anna. Pain killers are another common problem/side effect of cancer treatment. I found my self addicted to percocet on a couple of occasions and had to quit cold turkey.

annalexandria's picture
annalexandria
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I know that I can't do it cold turkey.  There's just no way.  I'm a big baby.

My step-mom, though...man.  She was taking percocet for a back injury for several months and when things weren't hurting anymore, she just up and quit.  I don't think she'd ever heard of the concept of withdrawal, as she had never taken pain meds before.  She said "oh, I felt pretty bad for a few days, and the I was fine".  Made me feel like a serious wuss (she's 77).

ams5796
Posts: 5
Joined: May 2010

Thank you! Over the past seven years I've been prescribed oxycodone after various surgeries and to combat lingering rectal pain after the resection. So many aches and pains feel a lot better when I take one (or actually a half). I also have a lot of bowel issues and I know that when I take one I can get through an activity or an event without having to use the bathroom. But, of course, there are many downsides to that. I know that it's a catch 22 with the bowel issues and if I stopped taking the oxycodone my bowel issues would probably be a lot better. I have stopped many times over the seven years and somehow I find my way back to taking a very small amount. When I do try to stop I also feel grumpy (am I just thinking that lol) and I have a couple of really sleepless nights.

 

But, I would like to be off them. It's healthier, of course, and I don't want to be dependent on drugs! So, thank you! I just cut a couple in quarters. I'll start that today. Good luck to you too. I know you've been through a lot.

esk2poo
Posts: 24
Joined: May 2012

AA,

i havhe been an addict basically my whole life. Had my first back surgery when I was 13 and had docs give them out like candy. About 5 years ago, I was going through 120 10 mgs. in about 4 days. Ended up in rehab where it is harder to get off Percocet than heroinThyey gave name saboxone to get off of it. Step down process but it sounds like you are doing the same. Nasty stuff.  Was actually clean for 3 years then cancer. I have my wife control all my pills when prescribed because if 2 is good than 6 is Gooder.

i actually have a lot of issues with neuropathy and the 5 herniated discs I currently have so the fentanyl patches work great for me.

good luck,

Allen

danker
Posts: 769
Joined: Apr 2012

Having had a herniated disc at l5, I cannot imagine the effect of 5 of them.  Only those of us that have had them know what it's like.

It;s a wonder you aren't currently an addict!! Best of luck to you!!!

annalexandria's picture
annalexandria
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Joined: Oct 2011

The sad reality is that these drugs are very useful and there are times when we really need to take them, but the side effect of addiction is a hard one.  I've read that some people have actually had to go to the hospital and be put into a near-coma for several days/weeks to get through the worst of an opiate addiction.  That's serious stuff.

But at the same time, as one doctor told me, these meds were designed with cancer patients in mind, and I think it's important for people in our situation to take them when we need them.  Pain makes it a lot harder to fight the cancer, both physically and mentally.

And btw, neuropathy SUCKS.  I am sorry you have to deal with that particular side effect.  Glad to hear the patches make a difference!

ron50's picture
ron50
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I have serious pain. Between spondylitis and psoriatic arthritis plus add to the mix severe permanent neuropathy in both legs and left hand. Walking is not fun and believe me not far. When I had my cancer op I had my first meeting with morphine. I did not like it and it does not like me. I respond well to nsaids but can no longer take them thanks to very leaky kidneys. I lose around 3+ grams of protein a day thru my urine. If I take nsaids for a couple of days my legs look like tree trunks. I take four panadol a day , that's it. I might as well use them as suppositories for all the good they do. I am one of the fortunate people who has a very high pain threshold. There is nothing good about pain except for the constant reminder that if you are feeling pain you are still alive.. Hugs Ron.

annalexandria's picture
annalexandria
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I can relate, as the NSAIDs helped my joint pain a ton, but caused new and unbelievable gut pain, apparently because of my significantly shortened digestive tract.  It's frustrating when you can't take the meds that could actually help you.

Have you ever tried one of the fentenyl patches that Allen mentions above?  I've heard a lot of good things about those from people who use them.

Hugs back 'atcha, mate.

Cathleen Mary
Posts: 640
Joined: May 2011

Thanks for sharing your experience, Ann.  You've got fortitude and courage. Best of luck.  This cancer and it's effects are certainly insidious. 

Let us know how you make out with the scan.

Hugs,

Cathleen Mary

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tanstaafl
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We've had joint, muscle and/or bone problems that surprisingly were most improved by vitamin D3.  Me? 5000+ iu. Her?  somewhere over 10,000 iu (she's been doing daily 25,000-40,000 iu for 32+ months, at first 11 - 17,000 iu after the CRC diagnosis; doctors approved her up to 50,000 iu with calcium control/monitoring, and anti-osteoporosis amounts of human K2, MK4).  Excess calcium is the toxic concern with high dose vitamin D3.     

My knee would hurt so bad I could cry. It was stiff as a board, and take me a minute to clamber into an SUV.  I have little idea how many thousands she spent on massage, rolfing, chiro. 

We've both used the joint formula, 1500 mg glucosamine, 1200 chondroitin, 1500-4000 mg MSM with important improvements, she still does it in her cancer supplements. I've used it at loading doses of 9000 mg glucosamine, 7200mg chondroitin, 8-12 grams MSM for several weeks, with overnight improvement.  The limits of MSM appear to be much higher.  Vitamin C hydroxylates the glucosamine, to produce rubbery collagenous materials that both lubricate and hold the bones toagther. We both have taken vit C in large-ish amounts, like 5-16 grams per day for several years. 

Some people have taken niacinamide 6+ times a day to improve arthritis pain. We may take high potency B complex 2-3 times. (not the common versions when on chemo because of the unnatural B9 version, folic acid, instead of natural type folates)

Before we learned to get more than the homeopathic RDA amounts (200 iu until recently, ffttttt to the morons at the Inst of Medicine), I took fish oil, primose oil (with 9% GLA), flax seed oil to get the last 50% range of motion, after the glucosamine-chondroitin-MSM formula stalled at 50%, in a bad knee, injured 40+ yrs ago. After a while I could use 1/2 doses of everything.  

After taking more vitamin D, I seldom need the joint formula, just a fish oil cap and some C. She doesn't have bone and joint pains any more, without actual injury.

 

annalexandria's picture
annalexandria
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I do take 5000 iu of Vit D, but haven't tried adding in the stuff that is specifically supposed to work on joint pain.  Need to do so, as I'm assuming that once I get off these pain meds, I'm still going to have the original pain for which I took them in the first place.

 

tanstaafl's picture
tanstaafl
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Joined: Oct 2010

My wife uses supplements to get off pain meds e.g. IV vitamin C for IV morphine after 1st surgery, the above for NSAIDs.

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

Thanks for the post AA.  You are a brave soul. I used to mentally struggle with the whole drug thing.  Before cancer I'd never taken a drug in my life.  I'm currently on oxicontin 10mg for pain and  oxicodone 5mg for break through pain relief. I'm quite sure I'm addicted but I'm also quite sure they help with my pain. Cancer is a bit## so I figure if I'm happy and the pain is kept in check, addiction is the least of my worries ;-)

 

annalexandria's picture
annalexandria
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Joined: Oct 2011

so an AA meeting kind of makes sense, I guess!

But seriously, I'm sorry to hear that you have so much pain.  Imo, you are absolutely right not to worry about addiction issues.  We've got to do whatever it takes to stay strong while we are dealing with cancer, and pain saps that strength.  Keep taking those pills as long as you need them!

PS Just fyi, 10 mg of oxy isn't really that much.  I've known cancer patients who were on way higher dosages.  Which is good, as it means if you need more as time goes on, you can have it.

Hugs coming your way~AA 

abrub's picture
abrub
Posts: 1540
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Right now, we are all tasked with doing whatever it takes to get us through this cancer roller coaster.  Dealing with pain is high on the list; pain meds when needed should not be avoided because of fear of addiction.  As AA so rightly states, pain saps strength - we need all we can muster for this journey.  If and when the time comes, we can deal with addiction issues then.

Alice

jen2012
Posts: 1251
Joined: Aug 2012

Not just any AA meeting but THE "AA" meeting :)  

Very good point though, managing the pain is more important than worrying about addiction.  My father in law has been on pain meds for YEARS for back issues - he's in his 80s now and the docs want him off the pain meds?  Really??  He's not driving - who is he hurting by taking them?

Hope you are having luck getting weaned if that is what you want AA.  Thinking of you and your upcoming scan - we need some really good news this week!

annalexandria's picture
annalexandria
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Joined: Oct 2011

to drop dead.  Seriously!  If he's been taking them for years, getting off of the drugs will almost certainly cause way more problems for the poor old guy.  Possibly even hasten his death.  I don't mean to sound overly dramatic, but the physiological side effects of withdrawal can be deadly, and if there's no solid reason to remove the drugs, they really shouldn't do it.  My mother had her pain meds switched around (not removed, they just decided to try a patch in place of the pills), and she had a major stroke a day later, died two days after that.  I don't have proof that the change caused this, but I can't help but think that it was a contributing factor.

And FWIW, my dad was able to give up alcohol after years of heavy drinking because he started to take Tylenol with codeine instead.  This was much better for him (and for all of us who had to deal with him, his drinking had gotten to the point where it involved chasing my stepmom around with a shotgun...unloaded, but still), and probably contributed to his longevity (he took the pills from age 50 until he died at 82).

Some people really need these pills, and physicaly dependency due to having an actual need (eg your FIL's back pain) is not the same as being a "junkie".   It's just the side effect that comes with this type of medication.

manwithnoname
Posts: 402
Joined: Jun 2012

We got the script for MJ, they wanted to give us a bong, we took sweets instead, watching a 10yr old get high was fun but then paranoia kicked in and it sure wasn't fun anymore.

We ended up in ER, Doc; is he on any medication?  Me; Yes marijuana.  Cool  went home and slept it off...

Actually we gave it for cancer fighting not pain or nausea, the dispencary lady also is very pro 'anti cancer' with MJ.

Soon we get some CBD, anti cancer and no 'high'. stage 4s should check this out.

CBD = Canabidiol.

annalexandria's picture
annalexandria
Posts: 2320
Joined: Oct 2011

that was posted recently?  The Rick Simpson stuff.  Have you been able to access that for your son?

 

manwithnoname
Posts: 402
Joined: Jun 2012

that thread, actually not reading too much on forums right now we did use RS oil, they make it here, would be reluctant to give THC again although CBD should cure the paranoia.

Next time I will experiment on me first Innocent

annalexandria's picture
annalexandria
Posts: 2320
Joined: Oct 2011

You're a good dad!*

 

*both a joke and totally serious

 

PS what is CBD?

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