Made a change in meds, not doing well at all

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raku
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/1/2008 12:37 PM (GMT -7)   
I should introduce myself, as this is my first post.
 
I been on chronic opoid treatment for chronic pain (pseudarthrosis of cervical spine, degenerative bone and disd disease) for 7 or 8 years, I forget exatly how long.
 
Over the years, there have been various changes, if I wsn't so sick today, I'd try to tell  you about them all.  Hopefully that's not as important as what is going on today, last weekend.
 
For last couple of years, been doing ok on 10 mg.s of oxycodone, 8 times a day, plus 10 mg. methadone bedtime and wake.  Only problem really was trying to get  a good nites sleep, cause meds kind of wore off, even though that was the main reason for trying the bedtime methadone.  I had been on oxycontin for several years prior, only reason we discontinued the slow release was the insurance dumped  OXYCONTIN at the time, and I was having to pay out of pocket.
 
Insurance has changed, they will now pay for whatever.  So I asked my doc to resume oxy treatment.  She did the math on equa dosing from the meth to oxy, wihich according to the book is 20 mg.s oxycontin three times a day, plus 10 mg oxydodone for brakthru and I approved.
 
But it's not working for beans.  I took my last methadone tablet Friday morning, and switched to the oxycontin that evening. Here it is Tuesday, and I'm getting sicker and sicker, and hurting like I havn't in years.  This is definately a combination of withdrawal symptoms as well as my bad bones being undermedicated.
 
Why?  According to the math from the book, (what book I don't know, but she looked it up, PDR I suppose) this should be working.
 
I did a bunch of reading this morning on the web, and did find somewone saying that the methadone works on two receptors, and oxy only on one, but I wouldn't know if that's true, or if it matters.
 
I put a call into the doc's office yesterday, and a nurse called back the today day and said "drink lots of water and eat good food.  Ok, I will.  I did.  That's not the answer.
 
Last thing I guess I should mention, is that this doctor kind of got passed off to me a year ago, after my doctor of many many years retired.  She is young, family practice/general practitioner.  I know she means well, and she went and talked to the "in house"  "pain specialist" (can't remember what that's called, my mind is racing and disorganised) and they "concurred" on this new regiment.
 
I don't know what to do.  I'm reluctant to rock the boat, as I don't want the whole ship to sink.  These last years have been the first relativly pain reduced after decades of suffering.
 
Thanks, and I'm happy to be here and have someone to talk too.
 
Raku
 
 

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/1/2008 2:23 PM (GMT -7)   
Hi, Raku,
Welcome to the HW forum, although I"m sorry any of us have to be here. I guess the main thing that sticks out to me is this "pain specialist" person - is this a trained pain management specialist, or just the doc in the group practice who knows the most? As I'm sure you know and are learning, these meds are challenging, and I don't think a lot of docs know much about using methadone, unless they've really specialized. I'd try to call the doc's office and find out - even discretely if possible (like pretend you're a new client searching for a pain management specialist, and see who they suggest). If this is a true pain management doc, I'd think about seeing him/her directly, although maybe you're not going to get much better service. I actually don't think it's common for family practice groups to have a board certified pain management specialist in their group, but there's always the possibility. You could also search your area/region for other pain management docs, including going to a teaching hospital if you're within a decent driving distance of a major one that has a pain management clinic. One other thing, you could call your pharmacist to ask, although if the pharmacist hasn't had much experience with methadone they may not be as skilled either. Pharmacists are great sources of info, I've found, and sometimes you can even call pharmacies that aren't yours and they'll give you general info.

I don't know if this helps, but maybe others will chime in.

Keep the faith. What choice do we have?

PaLady

Lisa (AKA pain)
Regular Member


Date Joined Mar 2008
Total Posts : 24
   Posted 7/1/2008 2:30 PM (GMT -7)   
Dear Raku,

I completely understand your situation. I've been in chronic pain for 8 years now. My meds have changed. They currently have me on 8 Percocet a day (should not have more than that because the tylenol can really mess you up). I then tried the percocet with roxicodone (same as perc. - only no tylenol in it. I slept at least have of my days. Granted, they had also tried my on oxycontin and morphine - both made me so groggy, tired, mushy brained and incredibly nauseous. Now, I'm only 5" and 105 lbs which may have something to do with it - who knows. I'm going to be trying Opana next - we'll see how that works. It is fairly new - so doctors aren't very familiar with it. I learned about it from another forum member.

I too had to change doctors when I moved to a different state 2 years ago. If they can't "see" your pain, well, how do they know it exhists. So frustrating!!!! - Good news is, they sent me to one of their chronic pain classes, and then I was assigned a "pain management person" (NP - not MD) She's been more help than anyone else. Just remember, keep your foot down!!! If it doesn't work for you - than let them know asap - and you need to try something new. You are in charge of your body and your pain - you know what helps and what doesn't. You have the right to be treated for what you have and not what they can't "see" Demand that they help or switch doctors.

Good luck to you
Lisa
 
Yesterday is history
Tomorrow is a mystery
Today is a gift - that's why they call it the present


Hound-Dog
Regular Member


Date Joined Oct 2005
Total Posts : 183
   Posted 7/1/2008 6:48 PM (GMT -7)   
Hi raku.I have had different narcotics tried on me during the last nine years of chronic pain after a botched operation.I started on morphine and then after a couple of years, my stomach started giving me some problems and that's when my Dr. started trying me on other narcotics.As it turned out, the official cross-over dosage of Hydromorphone didn't come close to dealing with my pain but when I took the prescribed dosage of breakthrough IR of the same drug, I started having bad headaches caused by dangerously low shallow slow breathing problems and very little pain relief.I toughed it out for about five days,hoping things would improve but when they didn't ,I contacted my Dr.and he saw me as his last patient of the day.He told me he was glad that I wasn't foolish enough to take more than prescribed because the slow shallow breathing was a major sign that death was possible with anymore increase in dosage.I have also tried Fentenyl,Lidocaine infusion,and large doses of Gabapentin, all with unsatisfactory results and have gone back to morphine because it works for my pain and I just live with the stomach problems.I sure hope that your Dr. is experienced enough to understand that one dose does not fit all people and takes the time and effort to find you some major relief from your pain soon.May God Bless You.

raku
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/1/2008 8:14 PM (GMT -7)   

Well, my lady doc called this after noon.  Very disapointing and in fact downright disturbing. 

 

She asked what was going on.  I described my symptoms.  (all the typical moderate withdrawal symtoms, plus increased pain)  She said that it sounded like withdrawal.  I mentioned the equation used to figure the doses, and asked why this was happening.  She said that what with the
"DECREASED" dose, it was to be expected.  Then she asked me if was having any repratory depression.

 

For christs sake. Does any one else see the irony here?  This is exactly why I didn't rock the boat for this past year after I got dumped off on her. We are making an appointment with a pain specialist a (phy****rist?sp)I know, trust and have seen a couple of times over the years.  She bumped my dose up 5 mg of immediate release.  I told her I was pretty sure that wasn't going to cover it.  She sounded real nervous then, and asked why I thought that.  I could tell by the tone of her voice that I should shut up and say "ok, I'll try the 5 mg increase".

 

So--suddenly, after being on meds that work for years and years, I am being looked a-slant at, like an abuser, or drug seeker.  I am so angry and disgusted and sick hurt all over.

 

The truth is, I have a considerable stash that I have accumulated over the years.  If I was a freaking abuser, those would not exist.  I am so tempted to take what I need to function and not feel so sick and hurt, but it would indeed be against doctors orders.  Respratory depression my butt. I'm in withdrawal, NOT over medicated.  I'm so darn opoid tollerant it's not funny. 

 

Raku


Post Edited (raku) : 7/1/2008 9:17:00 PM (GMT-6)


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 7/1/2008 8:52 PM (GMT -7)   
Hi Raku,

Nice to meet you but I wish it were under different circumstances. One thing that might help is to keep a pain journal. It won't help you today but when you see your doc next it will make an impression that you are not fooling around but are serious about your needs.

In this journal write down several times a day your pain level from 1-10; what you took; how you felt 1 hour later; activities that might have impacted your pain; and whatever else you think might help. Keep this up for a long time...as in several months if you can. Each and every time you see a doc, take this with you and ask them to read it first off. As your journal gets heavier and heavier they will see what your life with pain is like. Try very hard to be polite but as said above...let them know right away if a change isn't working. They can only guess at these changes and the only way they know if it works is if you tell them. If they don't hear from you they will assume all is fine.

Keep us posted,
Chutz
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 7/1/2008 9:56 PM (GMT -7)   
Raku,
I'm in so much pain right now, I haven't completely read your post.
I'll say this: Many doctors don't know all they should about Opiods.
The other: From all I've heard in my two years of Methadone, it's the hardest one to go off of. You can't just go off Methadone and go on to Oxy. You'll likely have
withdrawls. I don't know a "cool" way to tell your doctor. But you gotta find out. I'm not a medic.
I went off Oxy to a huge dose of Morphine. Morphine didn't do a thing. So I had WITHDRAWLS. OH OH OH.
Now I'm struggling along on Methadone.
Good Luck,
Let us know
Pamela Neckain

raku
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/1/2008 10:24 PM (GMT -7)   

Well guess why I'm up reading these posts at 10 pm when I get up at four am to see my wife off to work?  Thats correct.

 

Thanks for the mention of the pain journal.  I think that is a great idea, I'd heard of it years before, but never acted the good advice.  Thank you the reminder, I will start tomarrow.

 

And to the last poster regarding not dropping the methadone all at once even hen switching to methadone, I had no idea. Actually, my experience leads me to believe that that may only be partially correct, at least in my case.  I say this, because when I take enough oxycodone, the withdrawal stops.  But I don't think that my doctor is aware that an equal dose just wont cut it.  I think she said that for every 2 mg meth, should be substituted with 5 oxy.  If that's what she has done for me, well it's not working.

 

I'm going to call her in the morning.  I believe that the Physiatrist (is that the right title?  I'm almost sure it's something like that) will be able to help me.  She sent me to him over a year ago.  When I followed up with this lady doc I'm having the trouble with now, she said "well, Dr. Ander--- said your definatley a candidate for opoid analgesia."  Well duh.  He had said the same thing five years ago.  I just don't get it.  I've been on these meds for YEARS with little to no problems.  Why NOW???!!!  I'm so angry.     It's just it will probably take a week or longer to get in to see him.  Meanwhile, well I just don't know.

 

Query:  I have a dozen or so zanax I have saved from several years ago, when my father was passing from this world.  I might take one or two a year, actually usually only a half of one.  I'm trying to decide if maybe it would benifit my frayed nerves to have a quarter of one tomarrow if things get two squirrly.  I know, no doctors here, and cant' give advice like that, it's ok.  But I only have two other alternatives.  one............tough it out at her dosage.  which I don't HAVE to do, since I have supply.  Two.............take just enough oxy to keep out of withdrawal and see what the physiatrist has to say.

 

Well, we shall see.

Thank you all so much.  I really needed to talk to someone that knows the language.  My wife knows the language of course, but she has heard enough over the years.  Don't know how much more she can take.

 

Good nite, and godbless.

raku

 

I'm a self employed potter, (hence the name "raku")  No way I can work like this.  I tried the last two days.  Concentration just is not there.  Also neck wont take the wheel now.  I'm losing money every day.  This could ruin us.  I just can't afford to get any farther behind.


raku
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/2/2008 8:03 AM (GMT -7)   

Decided against Z.  Better not complicate things.  Should know more later today.

 

Thanks again,

R


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/2/2008 10:11 AM (GMT -7)   
Raku,
I think you're saying you decided against the xanax? That's probably wise, because of respiratory depression issues. I think someone well-versed in all you're going through with meds. changes needs to assess whether an anti-anxiety med. would help or hurt right now. Sounds like that's what you decided.

A physiatrist is a specialist in physical medicine. They can be great, and many people don't even know they exist, but I'm not sure how many prescribe narcotics or would know much about methadone issues. I'd suggest you ask when you make the appointment so you don't want a long time to see him/her only to be disappointed. They may have recommended the meds. for you but that doesn't mean they'll prescribe them. But often they're part of a team in what might be a pain management clinic. You could find this out by calling his office. If I'm reading right the physiatrist recommended the meds. regime, and hopefully you have a copy of that report (if not, I'd get one) so you could go to a pain management specialist with that. It will show you've consulted a physiatrist, and likely done everything he/she could recommend. Physiatrists would be superbly expert at all kinds of physical therapies, and sometimes the injections, but USUALLY by the time they recommend long term opiods they know nothing else is going to help.

Don't know if this help but I thought I'd add my two cents. Also, the pain journal is a great idea and I'd be sure to include how it's affecting your ability to earn a living.

PaLady

raku
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/2/2008 4:49 PM (GMT -7)   
Yes, physiatrist, still not sure if my GP will have me see this one again or not.  I have seen him twice in the past.  It seems that around these parts, as we do not have any kind of pain clinic that I know of, the local GPs use the handfull of Physiatrist that practice in area simply to cover their butt.  And that's ok with me.  My surgery was in 91.  since that time, I have been through the mill of physical therapy, tens units, I don't know how many other types stuff, NSAIDS, Viox, Celebrex, (lucky no stroke or heart attack eh?) the list goes on and on.  finially it was the GP that I lost a year or so ago that said lets try a new narcotic, Oxycontin.  (so when was that anyway, yes the stuff had just hit the market)  He put me on it, and for the first time in years, I had hope.  After about six months, he sent me to the physiatrist.  Really it seemed, just to confirm that this GP was on ther right track.  Their was concurrance.
 
Now this lady GP that that first doc passed me off to when he left private pratice has sent me the same physiatrist two more time.  And perhaps a third is due, doesn't matter.  He is no opiophobe.
 
I am going to be able to not hold this episode of four days of minor hell against my doctor.  I think I mentioned that she is young.  But she IS a nice lady, and I know she means well.  She does not want to harm her carreer or me.  I really had thought that I had earned her trust, but I guess not quite yet.  Still,------------there is great news---
 
I put in a call this afternoon. Said I just can not do this.  The pain in neck is too great, plus the anguish of the withdrawal, I have to do something.
 
So she said this, "lets try 40 mg.s oxycontin twice a day."  I said ok.  She did not mention  how many 5 mg immediate release were allotted.  I am going to take it "as needed", and wouldn't it be nice if I didn't need any?  I think it's not likely, but we shall see.  My experience would hold that it will depend on my level of activity.  We own acrage, their is hard work to be done.  Landcapeing to maintain, fire wood to be brought in, vehicals to maintain.  Fortunatley, not of that is a full time job, I couldn't possably  manage like that, but when stuff needs doing, I just do, the pain be darned.  It would be nice if she would allow for a little extra on those very bad days.  But I am convinced that 80 mg oxycontin will cover the lack of the little bit of methadone, and that I can get back to my life.  The three twentys really was a decrease, I just did not realise it.  Not sure why.  I'm already feeling much better.
 
You folks here are great.  It meant a lot to me to be able to vent, and have some compassion.  I am so greatful.  I will check in often and attempt to return the favor to someone, if it's a subject I have any useful knoweledge of.  Or at least just "hang in there, as I know how useful that can be at times.  This site is in my "favorites" list, so I'll be back and let y'all know how it goes.
 
God bless all, and thanks again.
 
Raku

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/2/2008 4:57 PM (GMT -7)   
You're welcome, Raku. And yes, it's very true that often even if you don't have specific knowledge a 'hang in there' or other supportive word can be helpful to anyone. Feel free to jump in anytime.

So glad you got some relief! Wish I could see some of your pottery. I love pottery and clay, but I don't know anything about them professionally, just enjoy the "feel" of wet clay from time to time.

PaLady

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 7/3/2008 10:36 PM (GMT -7)   
My goodness, a quarter of a one mg. Xanax wouldn't hurt a flea. Perhaps I shouldn't say it. I'm not a medical person. I am a person with HIGH ANXIETY and tight tight muscles in my back. I didn't read everything you wrote. My attention span is that of a flea. (Perhaps it's the Xanax?)
Pamela Neckpain

reluctant survivor
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/4/2008 12:25 AM (GMT -7)   
Hello,
 
I'm a newbee here, but an experienced veteran of chronic pain.  Changing docs and regimens is double trouble sometimes.  I recently encountered a similar situation when my PCP left with 2 weeks notice.  oh Yeah!   Ironically, she was an excellent doc and stand-up human being.  Not my pain doc, as I had been seeing a "pain management specialist", but she made certain I wasn't contorted in agony after a disasterous surgery.  It was the first time I'd taken kadian (morphine sulfate).  And in combination with the methadone, the pain demon retreated to the tolerable range.
 
After my doc departed, her husband, also a doc, recommended a replacement.  First time I saw her she completely misunderstood and ignored facts but was just delightfully desposed to take over my pain management and a train wreck of other conditions, disorders, diseases...we all know the road often gets steeper... So she RX's 20 mg kadian twice daily with percocet break thru meds. This was an overall decrease in my regimen, but as long as the BT meds lasted, I got by. The second red flag was raised when she set my next appointment for 4 months.  Huh?
 
Meanwhile, I had a bout with common sense and went back to my arrogant, stubborn and argumentative specialist.  But at least he's predictable.  He increased the kadian by 10 mg. But no BT meds, he feels they are 'dangerous'.  Starting over, too many times we must start the infernal process again and again.  Even now, I feel the revulsion of a pharmacist and get treated with our usual disrespect and disregard.  Miserable drug seekers.
 
Perhaps your new regimen will provide at least some more time with a bit of quality in your life, the ability to drag yourself from the recliner and perhaps maintain enough energy to get something done.  Now there's a good day for me!  It's always been my experience, however, that BT meds used every day tend to mask too much disability and we pay dearly shortly thereafter.  And at least in my case, there will be no increase in base meds (kadian) for six months.  Whew!?  Should there be any interest in the basis for my chronic pain, you'll need to ask, but I'd be honored to share the miserable train wreck if the info might assist another sufferer.
 
Wishing you the best of luck!  That "stash" of yours represents consistent discipline, and a great source for peace of mind.  Temporarily.  Like nearly everything else we are subjected to medically.  Your words seem to betray an inner strength that will carry you onward.  If I can be of any help let me know.  I did have Opana once.  It was 5 mg time released.  It was nothing.  Useless.  But the pharmacist indicated it is almost always prescribed in 20 - 30mg doses.  We had to call or visit 5 pharmacies just to locate a dose of Opana that low.  Nobody carried it.  I'll pray you have much better luck.  I noted links to conversion tables with a related search.  So the info is out there.  But even when we find good studies, the doc is liable to chock it up to good old drug seeking behavior.
 
Sorry for venting.  Trying to come up with something for your benefit.  Maybe there's a bone inside somewhere.  Hope so.
 
Best Wishes and Godspeed,
 
Darkstar06 scool

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/4/2008 7:07 AM (GMT -7)   
Dear Reluctant,
I just wanted to welcome you to the HW forum, although it's obvious you're not new to CP. Sad that anyone has to be here, but I've found it's better to have "eachother" than be struggling alone.

Your post is articulate and thoughtful, and I do hope you'll share more with us over time.

Again, welcome.

PaLady

reluctant survivor
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/4/2008 11:29 AM (GMT -7)   

 

Hello PaLady,

Thanks for the greeting!  I appreciate your kind words.  Sadly, gathering strength from message boards really is one of our only productive ways for learning and giving and receiving heartfelt support.  So-called "pain clinics" are popular in my area, but most are just glorified shot shops. Epidurals, anyone? This is the first time I've been back online since my mega-medical meltdown in 05/06.  Prior to that, though, I met many unforgetable partners in pain while typing away at 3 AM...  As you stated, at least we have eachother, and that can be life sustaining.

I really enjoy most types if history, except for my dreaded medical history. The list is so long now, in terms of diagoses made and unmade. I feel like some sort of freak or unwitting subject of one of those graphic medical cable shows. Cervical spine sports injuries and a MVA in which two of us, backseat passengers, were actually thrown through the canvas of a closed convertible top during the impacts. The wreck was hard on spinal and other body parts.

As we all are aware, it can take many years to actually stumble upon a well-trained pain management doc.  And left to our own devices, we endure pain that reaches levels when proper medical intervention may have at least slowed deterioration. Instead, damage compounds over time and pain can be much more complicated to manage. Thus our experience with the 'heavy guns' used to reduce our misery and disability. We tried everything else. And in that cruel twist, the compounds that are succesful will become less effective over time simply due to their nature. A true emigma, and just for us.  I'm off on the tangent again...sorry! It's taken me two years to reach the point where I'm okay to talk a little about the meltdown.

Althouth I'd been medically disabled several years before, I was ambushed in May of '06 by what the docs called a "massive, bi-lateral pulmonary embolism. The stats indicate about 80% instant mortality and approaching 90% during the first hour of treatment. They couldn't agree on 'why' it happened, but they were happy to report that embolization had blocked the flow of blood to my lungs, and extensive damage was done to the right side of my heart, most to my lungs, as well as other assorted parts. Now I have lethal stuff to deal with. Exceptional! I'm not an 'old guy' by any standards, but these last two years have often reduced time to having good hours over many 'good days'. Like many of you, I drag myself through days which are nightmarish enough that I don't always recall them later with typical clarity.  I blame it on the oxygen deprivation during my PE!  yeah

Appeciate your reading this. I'd like to hear from Katu and hopefully any progress!!  It's somewhat therapeutic to post like this, so I'll be looking for some news.

Happy Independence Day!!!  Deeper again this year.  A prayer for our soldiers today.

Best Wishes & Godspeed,

Darkstar06


raku
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/5/2008 6:55 AM (GMT -7)   

Darkstar, well arne't you an interesting fellow!  (I'm not sure why I think your a fellow as apposed to a gal, but I do)  And I mean that.  I enjoyed reading you.  Articulate and interesting.  Thanks for writing.

And sometimes it's good for me to hear from folks that have had many more complex pain issues than myself as it is quite humbling. I see that I really don't have life so bad.  Still though, things are not great, but much better than a few days ago.

I can tell that I'm going to do some Googling today regarding this "theory", or at least "proclamation", that Oxycontin gives 12 hours of steady state blood plasma level.  Isn't it Purdue that makes Oxycontin ?  Whatever.  I do know that whoever makes it claims 12 hours.  I call BS on that.  If there were a 12 hour steady plasma level, then a twice daily dose of 40 mg would not leave me with  3 hours twice a day of pain and withdrawal symptoms, correct? 

When my GP made the switch from three 20's to two 40's, I figured things would be better(and they are), but since she made no statement on how many 5mg immediate release oxy's were to be had, I was kind of left to my own devices.  I've tried one 5, seven hours after dosing the 40, and it has nil effect.  Takes two.  That works.  But I fear she will not go for for that many I.M.'s a day.  Realisticly, it would probably take six a day to truly cover.  Problem is, she has demonstrated that she is one of those people that seems to think that "less is more".  Heck, I was already taking eight of those a day, plus the twice daily dose of 10 mg methadone. 

I am shocked at how much oxycodone it is taking to take up the slack from the lack of such a small amount of methadone.  And I think she will be too.  I guess I just didn't realise how much those 20 mg's of methadone were doing to me.  I can tell any one-- one thing, and that is that now that the methadone has pretty much cleared from my system, I really "feel" those 40 mg Oxycontins.  And I really don't want to "feel" any thing but pain relief.  I consider any "feelings" unwanted side effects.  They are unwanted distractions.  I don't have time to be sedated, high, or anything like that.  It P's me off, costs me money from lost time at  productivity.  If I recall though, it will pass.  What DOESN'T pass, if I recall, is the "mini"-withdrawal and recurrance of primary pain that begins occuring approx 7 or 8 hours after doseing with oxycontin.  And I think that this confuses and confounds these doctors.  I'm not sure what the definition of "breakthrough" pain is.  You know, the pain that is typically treated with I.M. release something, between doses of E.R. something. Is this it, or is it something else.

Who said their doctor doesn't believe in I.M. beds for "breakthrough pain?  Was that you Darkstar?

Said they believed it was too dangerous?  I would like to hear an elaboration on that philosophy.

It's just that-- over the years, I have established that if we can find some stable combination, I'll stay right there for years.  I don't come back begging for more, more more.  That's one of the troubles with narcotics for chronic pain isn't it.  The "it's never enough" sydrome which can be brought on by the phenomana of "tolerance".  It's a difficult nut to crack.  Takes discipline, determanation. And a willingness to suffer some darn unpleasn't side effects every now and then.  It turns us into liars sometimes, since we know from experience that if we tell our doctors, then they start fishing.  And when our doctors start fishing, we suffer.  What I do, is when I figure it's as "good as it gets", I tell the doc, that "it's good enough".  I guess that's not really lying.  But crap, I wish my old doctor was still around.  He understood that I am the one taking this stuff.  It's MY pain.  I am going to know MY PAIN, and how these meds affect me.  I'm so sick of doctors listening to me, then going to the BOOK and reading what IT says, seeing a discrepancy, and then believing the book, instead of me.  12 hours my butt.  Not for me anyway.  Maybe the twelve hour thing is true for the Opoid naieve, and that is where that comes from.  Dont know.  That does seem to make sense though, now that I think about it.

Anyway, I am completely rambling, and sorry for it.  I DO wonder about an earlier statement about Methadone, and not being able to "just stop", even with other Opoids availiable.  Makes me wonder if that is still a part of my problem, and that in another week or so, things will settle down.

 

Lastly, I want to share something a physiatrist told me many years ago regarding long term chronic opoid use for pain.  I'll have to paraphrase, I can't quote.  too long ago.  He said when a patient is considering jumping into chronic opoid use, that the patient needs to be aware of the many difficultys involved.  Like, social stigma.  Fighting doctors.  Fighting pharmacists.  Opoiphobic professionals in medical community.  Doctors on vacation.  Insurance companies that think opoids are for the dying only.  (but for Gods sake, don't get the terminally ill addicted!!, so don't give even them too many!)  His list went on a bit, I can't remember all of it now, but every now and then I sure do think of him.  Aint it the truth.  And sure there are alternatives.  The descision is a heavy one.  Indeed, ALWAYS best to try all the SAFE alternatives prior to chronic opoid treatment.  But who decides what is safe?  I took Celebrex for a year, Viox for six months, so DON"T tell me that the FDA has their s--- together.  We gotta use our heads and do our own research.  Even then, it's a dangerous world.  And who to trust?  You, that's who.

Well, I see that I've begun to rant.  I've a day ahead, so here I go.

Best of luck to all, and see ya around,

 

Raku

 


Post Edited (raku) : 7/5/2008 1:04:29 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/5/2008 8:51 AM (GMT -7)   
Raku,
Your "rant" is one many of us understand. Not to worry! My cousin is a pharmacist and I've learned more from her than most doctors She works at a V.A. and treats many CPP's (obviously!). Since I'm now considering oxycontin, or some other longer acting med (since back surgery failed and I don't want another, no, thanks!) she told me oxycontine is SUPPOSED to last 12 hrs., but for some people only lasts 8. That's why the need for BT med. It is very individual and a doc that understands this will know you're not some aberration. She has also said to me that while she and her co-workers always wonder about some of the patients who may be abusing their meds, they know that by and large the majority aren't. (Please see the thread I posed on Clarifying Dependence, Tolerance and Addiction for a great link to a document you may want to take to your doc) And she continues to tell me that for long term use, opiods are actually much safer for the body than many other meds. Oh, and she also says that once most people have reached the appropriate level of coverage for their pain, they often stay on the same dose for many, many years. She doesn't see tolerance as a major issue for us CPP's over time. But most of this knowledge is not what our docs know. Most of them are, as you said, opiophobes. And very, very ignorant and full of biases. I say this as someone who's a health care professional myself (not a doc), and I get no better treatment than anyone else. I'll probably have to drive to a major city 3 hours away once my neurosurgeon stops prescribing, coming up soon.

Ok, that's my rant!

And reluctant - you sure have been through the mill and then some! I loved the wisdom in your post, especially your first paragraph. Yes, this is indeed "life sustaining". I don't know what I'd do if I hadn't found the people on this site. If I make it through my health and financial crises, it will be to a large extent because of the support and information I've found here.

Take care, new friends,

PaLady

reluctant survivor
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/5/2008 10:49 AM (GMT -7)   
Hi Raku!
 
Good to hear back from you.  Thanks for reading a portion of my strory. And yup, I'm a guy.  I sure hope you can resolve your BT issues.  It's hell.  I know I was much more active and less dreaful of increaing pain levels when I was prescribed regular BT meds.  Now, like you, I get 6 hours coverage from 20mg Kadian, then spend the remaining 6 cringing and mostly immobile.  My PM doc does have a certain compassion for his patients, but it usually ends where covering his ass begins. I have no idea what regulatory pressures, if any, that he faces, or how limiting that might be, but my instincts strongly suggest his "philosophy" is surrounded by self interest. He'll RX BT meds only when I am half-dead sick. This why I desperately miss my PCP. She'd 'violate' my pain contract with a BT RX when absoutely needed.  And unless the hypervigilent, biased pharmacist interved, I actually got the meds! So, I survived with a little less pain and anxiety on an intermitant basis. Now, the relentless pain monster lurks most all the time. Being a rural area and my present dependence on what passes for 'public transportation' hugely reduces my medical and related resources. Ask me about my car somtime.  It's really almost funny how it came to be extinct.
 
My experiences are smilar to yours, Raku. With a proper regimen I was nearly completely without the need for other drugs.  For over 3 years.  "the good old days"!?!  It's very likely you already have one, but if correctly modified by the patient, a pain contract can settle the BT disputes in advance.  Otherwise, you'll always have that obviously fiesty, informed and determined temperament to drag yourself along this lonely road.  Hope find what you require!!!!!!!
 
PaLady,
 
Sure wish one of my relatives had studied pharmacy. An incredible resource for you. I met a young, vibrant pharmacist at an "anticoagulation clinic".  A place for monitoring my blood level of coumadin...AKA 'rat poison'....which keeps my blood thin enough to theoretically reduce the likelihood another massive clot will form. It's take the drug or stop living. So I sort of take it seriously, and there I was with two professional young women for the first time to reinforce my education and get the blood tested. (level was low BTW, which is worse than high in terms of risk) Yikes!!  The most animated pharmacist was so straight up and forthcoming with information that I was nearly speachless.  Some of which actually confirmed what I have gleened about pain and related meds over the years.  If I thought it might make a difference, I'd ask her to advocate for me to my characterologically stubborn PM doc.
 
Sounds like you're facing the type of unrelenting stress that is compounded over time and always exacerbates symptoms and may even result in a serious illness depending upon other factors involved. I sympathize with your financial woes, PaLady. They are so exhausting, especially if we cannot directly impact the situation except via psyche and strength draining excessive worrying and inconvenient anxiety. Being in rather dire straights myself, I cannot provide good advice. Keep the faith, though. Amazing stuff can happen.
 
I hope you have other good resources for dealing with the dreaded medical issues. I'm still hunting for a PCP who is willing to take on a risky train wreck.  I apologise for not knowing you DX's.  There might be an off chance I could offer something resembling assistance.  I will keep you in my thoughs and send a cyberwish for a good outcome!!
 
Thanks for your company, Raku & PaLady!!
 
Wishing you and eveyone suffering moments of rest and glimses of laughter.
 
Godspeed,
 
Darkstar06

raku
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/5/2008 1:40 PM (GMT -7)   

Reluctant Survivor, my apologies to have given the impression that I only read "part of your story".  I read all you have written with keen interest.  But my attention span at the keyboard is not up to snuff since these abrupt changes were thrust upon me.  Not only is memory all askew when under medicated, but I also seem to have suddenly become dislexic!  I mean that I'm typing crazy mispelling which are not found untill I reread the post the next day!  Now I'm not that great of a speller anyway, but usually I at least KNOW when I screw up.  Also, Ive got fast fingers, and they get ahead of my train of thought, and I inow I am not always making sense.  But yes, I read all of your posts, you too Plady, welcome stuff all of it.

 

It is clear by this afternoon that I am only have eight hours of comfort from 40 mgs of Oxycontin.  10 miligrams of IM oxy fixes it for next four hours.  So for to six IM's a day will do it.  I fear she is going say that I get none.  In which case I am screwed.  Won't know untill Wednesday.  I think I had said Friday, but I was looking at my calender wrong.  Will definately check in here after to announce how it has gone.

R

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