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annalexandria

Annabelle41415's picture
Annabelle41415
Posts: 4205
Joined: Feb 2009

Just was wondering how you have been doing going off of your medication and if you are almost through the worst part and if you are dealing with any pain.  You have been through a rough road on this issue and wishing the best for you.

Kim

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

I think I need to go to "non-celebrity rehab" or something.  I have managed to cut back from 6 pills to 4 1/2 pills, but am now stuck at that level.  The problem is that I do have pretty significant joint pain, so it seems that I may not be able to function without the darn things.  Less than that amount and the pain really kicks in.   I hate to give up my extreme sports, like walking, so I'm working on accepting the idea that this may be how things are for me.  They never do tell us about all the possible side effects of tx, and how long they may last (FOREVER) do they?

Oh well... I guess so long as I don't end up robbing pharmacies or something, it's not the end of the world.

Hugs to you!

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Coloncancerblows
Posts: 296
Joined: Feb 2013

Hi Anna!

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

you look healthy and happy!  How are you doing these days?

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

Forgive me if I seem get into your business, but I do this with my best intentions. As you know I had a major resection surgery a month ago and I was prescribed Norco for pain control which works wonderful. I still try to gradually switch to ibuprofen, because I don't want to get hooked on this stuff. So half if the time I take the non-narcotic painkiller and will eventually take only that. Ibuprofen is great for joint pain, because it also has antiinflammatory properties. Or maybe you could talk to your doctor a better non-narcotic pain med for your joints.

Thanks for your consideration,

Laz

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annalexandria
Posts: 2183
Joined: Oct 2011

I appreciate the advice.  My doctor did have me try various rx NSAIDs, like Naproxen and Celebrex, and they worked great.  In fact, my joint pain went away within 24 hours, which was amazing.   Unfortunately, I have a very compromised digestive system.  Over the course of multiple surgeries, I've had a lot of intestine removed, and apparently this can make it very difficult to process those drugs.  I ended up with terrible cramping and diarrhea (but no joint pain!), so bad I thought I was going to land back in the ER for the first time in a couple of years.  My doc took me off of them immediately.  I wish I could take them, and your advice would very good for most people.  Those are very effective drugs.  Unfortunately, I'm kind of stuck with the narcotics, according to the various docs I've seen (which include my GP, a rheumatologist, the oncologist, and a pain management person).

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

I should add I also saw a naturopath, who thought that I have something called "leaky gut syndrome".  She feels that this is a common problem for folks who have done the crc chemos.  It would be addressed by taking glutamine (which makes me nauseated, so...no), and determining food allergies and addressing these.  This, according to my rheumatologist, would be worth a try, but it doesn't have much science to back it up.

I tested allergic to virtually everything I like (cheese!  bread!), so while I have reduced these things, I haven't gotten rid of them all together.

But for others with joint pain (and will power, which I seem to lack), it might be worth a shot.

hippiechicks
Posts: 302
Joined: Sep 2012

I feel your pain ther Ann ... still trying to figure the best joint/muscular pain management myself.  Seems to be a constant battle .. and I feel guilty complaining about it after going through so many surgeries and chemo to save my life .. it could be so much worse.  

I am interested to hear about this leaky gut thing. 

I also have a very compromised digestive system with very little intestine left and cannot seem to get off the nexium pills without waking in the middle of the night with heartburn.  Do you have these issues as well?  If so ... recommendations?  I know these stomach meds are supposedly bad for the bones ... so I am thinking it contributes to the pain .. ya know the visious circle thing?

Sounds like you are doing the right thing for your pain and wish you continued success.  

 

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

I think it's worth reseaching the leaky gut syndrome.  The idea behind it is that our intestines were damaged by chemo, making them more porous, thus allowing microscopic bits of food out into the body, where of course they are not supposed to be.  In response, the body pushes these "invaders" away from the critical core and out to the extremeties, causing pain in the hands and feet (and in my case, when things get bad, upward into the knees and elbows).  

The approach to fixing this situation is to do food allergy testing, and then cut out whatever foods come up as allergens.  Or better yet, do an "elimination diet", where you take out all possible allergens, and then slowly reintroduce one food at a time to see what's triggering the pain.

This part of the process I don't quite understand...wouldn't all foods, not just the ones we're allergic to, get out of the intestines, and cause problems?

We can't give up eating all together!

Anyway, I have noticed when I avoid certain foods that I'm apparently allergic to (like eggs), I do have less joint pain, so maybe there's something to it.  I'm also allergic to cheese, and I had to draw the line there.  I guess I'm more willing to live with pain than without cheese!

I don't have heartburn, btw.  I have a lot of other unpleasant digestive issues, but not that one.  I think if I was going to take a med for that, though, I would probably take Tagamet/cimetidine, so that at least I might be getting some protection again cancer spread.

I hear you about the guilt...I try really hard not to complain too much about being alive, broken though I may be.  It's a lot better than the alternative, as the old saying goes.

hippiechicks
Posts: 302
Joined: Sep 2012

Thanks for your insight.. I was JUST researching the heartburn and nexium thing and came up with the tagamet!! LOL  

I have an appointment coming up so will be on the top of my discussion list.  Laughing  I am not willing to give up my coffee or chocolate .. so I hear ya on that restriction thing!  I don't over do it .. but I like my little bit of pleasure.   

I don't have hand or foot pain ... but lots of pain in my shoulders, spine and hips. It is daily and I look like I am 40 years older than I really am when getting up from a sitting position.  

Baby steps I guess. 

traci43's picture
traci43
Posts: 419
Joined: Jul 2007

Anna - I can totally understand the desire to get off a drug that can be very addictive, but truly you don't sound addicted.  You sound like you still need them.  My thought is to give yourself a break and stay at the 4 1/2 pills or whatever level gets you to where you can do things you love without always being in pain.  You really seem to have a pretty good grip on things.  

I've had knee pain for the last few years and found that hyluronic acid injections are wonderful and last longer than cortisone.  I'm hoping you're trying things like this as well, although not sure if it works in other areas of the body. My knees are really just bone on bone now caused by being overweight for many years and not by cancer treatment.

Hope you feel better!  Traci

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

I don't think I'm exactly "addicted" either, but I do have a physical dependency on those suckers.  Can tell because when I taper off of them I start to have other symptoms that are seperate from the joint pain.  Just part of the fun of being a cancerian, I guess!

UncleBuddy
Posts: 527
Joined: Aug 2013

You have to do what makes you comfortable. If pain meds gets you through the day, you gotta do what you gotta do. :)

Lin

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

I came out of my surgeries and chemos using both effexor and ativan.....regularly.  I think I was on .5 mg of ativan for about 8 years....when I decided to stop I did and then I dropped the effexor also. 

I believe that in this journey.....this long hard journey there is a time for anything that really really helps/////we will sort it out eventually......in the meantime I am looking forward to my Friday night glass of wine....Laughing

mags

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

Only mine will probably have gin it it. Laughing

 

PS  "Don't drink and take pain meds."

PPS "This message brought to you by CSN's resident junkie"

jen2012
Posts: 1187
Joined: Aug 2012

Rsident junkie and comedienne!   Is that spelled right?  

I've read that not dealing with pain can make you not heal or get sick, so I say listen to the docs and keep doing what you are doing.  You seem pretty active and involved - it doesn't seem to interfere with your life too much - probably not as much as the pain would.

 

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

The pain meds are actually no problem.  They can cause constipation for people, but for me, they probably help me be more "normal" in that regard.  My effort to give them up stems more from the concern that I will have to take more over time, and that they don't help as much as I would like anyway.  But they do allow me to function, and I'm not willing to give that up in my quest to "just say no" (sorry, Nancy, I know I've let you down).

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

I couldn't spell "rotisserie", remember (and I think I just spelled it wrong again).

CSN, SPELL CHECK PLEASE?

danker
Posts: 730
Joined: Apr 2012

There is nothing like Beefeaters is there???

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

you have good taste, Dan!

I have to admit there's nothing quite like a well-made martini, although it's very much an acquired taste.  First time I had one I felt like I was drinking paint thinner.  I always thought the best way to keep teens from drinking would be to require that their first exposure to alcohol be a healthy gulp of a strong martini.  They'd never drink again.

(my oldest once ordered a "virgin martini" in a Mexican restaurant...she meant margarita.  It occured to me that a virgin martini would be nothing but a couple of olives rolling around in the bottom of an empty glass)

Annabelle41415's picture
Annabelle41415
Posts: 4205
Joined: Feb 2009

Sorry that you are still having such bad joint pain.  Glad that you have reduced the amount by some.  When you are in constant pain, it's hard to not take something.  Glad your doctor has tried other things for you.  Someone else on here had the leaky gut syndrome (think it was Pete), but I'm not sure exactly what that is.  All you can do is keep trying to move forward.  I'll toast with you also Wink - no drugs included Laughing

 

Kim

Scubadan (not verified)

One of the most important things about pain control is to stop it when it starts.  If you wait until the pain is worse it is that much harder to try and stop it.  Our anesthesiaologists here in surgery go so far as to pretreat pain before it even starts.  Of course with most surgeries there is a prediction of associated wound pain.

You may not be able to anticipate the start of pain in order to pretreat, but you should treat before it gets bad.   Dan 

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

that's very true!  I take the pain pills 3x per day, every day (and have been slowly cutting back the amount I take in each does).  That enables me to stay on top of things, and keep the pain at a manageable level.  Not doing so is a bad idea.  I recently went on an all-day field trip with my son's class, and forgot to take my pills with me.  It took me about a week to get things back under control...and going through the first stages withdrawal in the middle of the woods with a bunch of unruly 9 and 10 year olds was...interesting, to say the least.

danker
Posts: 730
Joined: Apr 2012

When I was in Japan, Two 10 year olds came up to us asking if they could practice their english. What impress Josephine and me the most, was they came from a group  of eighty, supervised by only one teacher.  So much for dicipline in the USA huh!!! 

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