Hi karen,

Thanks again for sharing another informative piece. I am concerned. i am one of those patients who does use a longer/slower acting opiods. I have been on this medication for over 10 yrs without ever having to increase my dose except post op from neck surgery. In fact I have taken myself down with the help of my wonderful pain specialists from 160 mg to only 5 mg when I get up. That's tends to be when I the pain is just not managable. I have Fibro, spinal stenosis of the cervical spine, arthritis. I also had jaw joint implants put in my jaaws in 1984 and remained sypmtomatic when in 1991 the FDA recalled the implants due to a high rate of failure. The implants were disintergrating in peoples bodies which set up  rejection process. It has been a rough 28 years. These implants were approved by the FDA which later our attorney's discovered much wrong doing and neglect on the part of the FDA, who is our governing agent set to protect our bodies fro such horrors. I have a hard time trusting the FDA.

I am praying that this all sahll not come to be as I a patient who has had the need for opiod medicaion jst to get by will be ina real fix should the FDA make it harder or impossible to receive my meds. I am not a drggie, never have been, and resent being compiled with a group of "could be's"

Thanks for letting me vent.

Toni Helser

tjhelser 

Thanks for making this info available to us. As a fairly new user of extended release opioids (though I have been on pain meds for 7 years now), this is an issue important to me. The extended release meds have been the first to give me a halfway decent quality to my life. I suffer with RSD in my leg which in turn has messed up my back because of uneven weight distribution and crutch use. Once I started the extended release meds I was able to keep the pain to a fairly manageable level most days so I could have a fair shot at enjoying life a little bit. Anuthing the FDA does to change that would be horrible as far as I am concerned. There are so many issues with insurance companies and RSD (in particular) that could have possibly put my RSD in "remission" and avoided all this pain, which is a whole different story. Now that I am stuck with it, I hope the FDA does jeopardize the little quality of life I have finaly found by changing things.

Miss Richards,

I am sorry that you feel that the very few who are abusers, fakers, and/or addicts should force all pain patients to be painted with the same brush. ** Agreeing to, for instance, random urine tests, presupposes abuse/lying.

I also wish that you had used the correct terms.  Most pain patients do not become addicted.  Some may become physically dependent, an entirely different animal.*

No other medical treatments come with the caveat that 'we assume you are a liar, a faker, an addict or an abuser.' 

Thank you.

Carol Jay Levy, B.A., CH.t
author A PAINED LIFE, a chronic pain journey
founder, Women In Pain Awareness website, http://womeninpainawareness.ning.com/ founder, Women In Pain Awareness Group, facebook http://www.facebook.com/?ref=home#!/group.php?gid=111961795481256 member, cofounder with Linda Misek-Falkoff, PWPI, Persons With Pain International,
accredited to the U.N. Convention on the Rights of Persons with Disabilities
member U.N. NGO group, Persons With Disabilities

*Although most chronic pain patients who take opioids on a long-term basis will become physically dependent on them, very few will ever become addicted to them. The rare few who do develop a problem are often highly susceptible to addiction due to a genetic predisposition. In a review of 24,000 patients who were medically prescribed opioids, only seven could be found who got into trouble with them. So a chronic pain patient becoming addicted to opioid medications is definitely the exception rather than the rule.http://www.healthcentral.com/chronic-pain/coping-279488-5.html

**"Unfortunately, abusers are often very good at faking it, and there are no lab test that can accurately identify pain levels, so doctors are forced to do the best they can, utilizing tools like treatment agreements and random drug testing to make sure they're not contributing to someone's addiction problem."http://www.healthcentral.com/chronic-pain/treatment-290437-5_4.html

(These 2 articles seem to me to be at odds with each other.)

LaughSing

7/ 9/10 1:48am

Ms. Levy, can I conclude that you're not overweight, or a type 2 diabetic on insulin? :)

 

There most certainly are other medical treatments where your doctors assume you are lying.  I deal with that on a regular basis.

 

Agreeing to random testing, and the rest of the Narcotics Agreement protects your doctor, which protects your access to the medications that you need for pain management.  As long as every single pain patient is under the same agreement, there's nothing that presupposes any nefarious intentions or bad acts, it's simply the doctor's insurance policy that he doesn't have to trust his (or her) instincts.  If a doctor goes by his judgement alone, he only has to be wrong ONCE to have his entire practice shut down, to deprive hundreds of patients of desperately needed medical care.

 

Really, it's not personal.  If they used their judgement instead of having EVERYONE sign a Narcotics Agreement, THAT would be personal.

 

If you think those two article excerpts are at odds with each other, I suggest you read them again, perhaps with a more open mind.  Perhaps the reason that so few patients actually get into trouble with prescribed opioids is exactly BECAUSE the doctors use treatment agreements and random drug testing?  Anyone who even begins to show any signs of a problem does not get any more prescribed opioids, and so does not develop a full-blown addiction problem. 

 

And yes, I am a chronic pain patient, too.  I'm living the dream, too. :)

ceejay

7/ 9/10 1:03pm

I am not sure what my weight has to do with it and no I am not a diabetic.  I imagine that the lyiing refers to keeping on your diet and taking the meds on time, correctly, etc.  That is not analogous to being presumed guilty because you are a chronic pain patient being prescribed narcotic medication.

Yes. patients do lie about many things.  It is only in this context that they are required to sign a form that obligates them to agreeing to actions that those who are addicts are required to do when in rehab, jail, or house arrest despite no evidence that they are addicts, only people in constant chronic pain.

My doctor does not require me to sign one.  He does pick and choose.  As a doctor he should know the indices showing which patients may be problematic, either with lying or with misusing narcotics.  I worked in an ER for years.  Most patients did not lie; the ones looking for narcotics were usually easy to pick out. If the woman down the street abuses her child do we then assume that all women abuse their children and treat them all as suspects and potential abusers?  Do we require them all to prove they are not abusers, require psych testing or supervisory visits to the home?

I have experience with both sides.  My neurologist lost his right to prescribe narcotics.  He was not selling them or overprescribing for fun.  He may have been overprescribing, but knowing him, it was to help his patients, not to do something nefarious.  On the other hand a pain doc, psychiatrist and pain clinic owner, was found to have over 5,000 narcotic pills in the clinic.  The police believe he had this cache to sell or distribute illegally.  Do we place all doctors iin his category then?  No, he is the unusual, not the constant.)

As for the articles I have read them.  One talks dependence and rareness of addition, the other presupposes addiction problems.

Your sentence "Anyone who even begins to show any signs of a problem does not get any more prescribed opioids, and so does not develop a full-blown addiction problem." is a perfect example of the problem.  You write 'addiction'.  Again most patients who develop a problem, and that is a minority, do not get addicted, although they may become physically dependent. It is even a more tiny minority that get addicted.It is not same thing and yet it is the reason of  presumption of guilt by association (with narcotics)

I appreciate your reply and the opportunity for discussion.

Thanks. Carol

 

 

Karen Lee Richards, Health Guide

7/ 9/10 2:50pm

Hi Ms. Levy,

I think there may be some misunderstanding so I'd like to clarify my position.  I have always spoken out against treating pain patients like suspected criminals.  See my article:  Guilty Until Proven Innocent

 

I'm not sure exactly where you think I used the wrong term.  In the Sharepost this comment is attached to, I don't believe I used the term addict, addicted or addiction at all.  And I don't believe I've ever referred to pain patients as addicts.  That is indeed a rare situation, as I indicated in my article on addiction vs. dependence that you referred to. 

 

I think part of the confusion may stem from the quote you referred to from my article on Treatment Agreements.  When I said "utilizing tools like treatment agreements and random drug testing to make sure they're not contributing to someone's addiction problem," I was not referring to the addiction problem of pain patients, but rather to the addiction problem of abusers who fake being in pain in order to get opioids.  Perhaps I should have worded it differently to be more clear. 

 

I absolutely agree that it's not fair for pain patients to be treated like addicts or potential addicts because of others who choose to abuse drugs.  But unfortunately, if most of us want to be treated with the medications we need, we have to deal with the system as it is.  Of course, I think we should keep fighting to change the system. 

 

It would be great if there was some way for doctors to easily separate the real pain patients from those just seeking drugs.  But I've read of studies done to test doctors' ability to do that and none of the doctors were consistently able to identify them correctly.  Personally, I'd rather see a few get drugs who shouldn't than let pain patients suffer needlessly.  But until the DEA stops the high-profile prosecutions of caring doctors who were fooled by some abusers, we're going to continue to have the problem. 

 

I hope I've been able to clarify my position.  If you have any other concerns, please let me know and I'll be happy to address them.

Karen

 

ceejay

7/ 9/10 8:44pm

Dear Karen,

I just read that article.  Well put.  I am just sorry that it is the patients who see we are being treated as criminals but the government cannot (or will not). Unfortunately we are an easy population because many of us do not have the physical/emotional resources to put up a concerted fight against the DEA.

I cannot find the full article and it may well be I misunderstood to which group you were referring.

Thank you so much for your reply.

Carol

 

 

my chronic small bowell obstruction, pancreatitis and infections around my stomach. i have been useing these med's for 7 yr's. these health problems are related to a serious birth defect in my small intestine/pancrease and the on going problems. thru time, i am not on as stong a mediciene as before. i have  worked to lower the dose & type of pain releiver. i have tried new option procedures. when i go to the hsopital every 3-4 weeks, they see i am not trying to get one by them. i agree that the problem of abuse & addiction with opiods is out of control. i live by very strict guidlines to make sure i am not part of the problem. i don't mind i it will stop some teenager from taking these pills. i just want to makesure that all of a sudden, my pain mgmt. docotor,  gi surgeons say that your paint mgmt plain will nolonger be available because of the abuse of others. i do other methods of mediation & relaxiation to work with the opiods i take. as one person's health issue's may have the same name to another persons health problem, the same treatment is usally not the same.

Thank you, Ms. Richards, for your lead article that provided the background and the Internet link to FDA documents needed to get me quickly up to speed on this important topic. As both a chronic pain sufferer for the past few years and as an opioid researcher and drug addiction specialist for over 35 years, I have quite a bit of 'opinion' (based on research and analysis) to weigh-in on this issue. (FYI: Among other things, I identified the site in the brain nearly 30 years ago where opiates work to produce their potent rewarding effects that can lead to addiction as well as demonstrate how physical dependence and addiction -- as viewed as compulsive drug-taking behavior -- are actually very much different. I went on to develop a theory of addiction suggesting that cocaine and heroin actually work on different parts of the same brain system; this general model remains paradigmatic in the field of drug addiction today. Now, I've clearly identified myself to my colleagues and my students. ) I was very pleased to learn from your article that I haven't missed the new deadline for open commentary.There is little worse than learning that an important issue has been decided without at least having the opportunity to try to make a positive difference in the proceedings. (Perhaps the "little worse" only applies to us academicians on most topics.)

In case it's not clear (as it wouldn't be from my main area of expertise), I am very strongly in support of patients' rights to adequate medication for the management of chronic pain and I feel that 'addiction through therapeutic opioid use' has been greatly exaggerated. I have not yet written my commentary, but one should appear in the next few weeks on my ASNet Discussion Forum which can be assessed through our home page at www.AddictionScience.net and which will be forwarded to my colleagues on the FDA advisory panel. I am also very pleased that your efforts have apparently led to pro-patient revisions in the guidelines already. Keep up the good work and I'll try to 'lend you a helping hand.'

I'll keep you posted (pun intended) on my progress. (OK, laugh a little . . . it does help manage the pain.)

tjhelser

9/ 2/10 7:02pm

I look forward to your commentary. This has been a long time, hot issue for many of us, including myself.

I am most interested in how an addict speacilst who is also experiencing chronic pain deals with his life.

I have been using pharmaceutical treatments for over 25 years for my daily pain, almost always they have been classified as a narcotic. Today and for the last 10 years I have been treated with slow released opiods, never having a problem on my end.

However, I did discover that one internist I saw for a couple of years was arrested for sexually abusing some female patients who he also presribed opiods to. I was lucky in that he never tried to touch me but knowing his personality I can see how he would use the patient's medications as a carrot to dangle in front of them. I am disgusted that this man even took my pulse let alone treated me for two years.

The very people we are supposed to be able to rely on not only have valid concerns that are then exaggerated, but some of them even make it more painful to live a life and also try to receive treatment. I believe that many phyicians sabatoge many lifes while under their own sworn oath to "first do no harm"

Being a chronic pain patient is a definite decline into second class society, only because of our society, medical communities, governments local and national, and sometimes even our own families make us so.

To hear from a person who has his feet in both worlds will be intetresting.