A Pained Life: Is Rescheduling in Lieu of Better Pain Meds?

A Pained Life: Is Rescheduling in Lieu of Better Pain Meds?

Estimates are that there are 100 million people in the U.S. with chronic pain.

The numbers are not broken down into long term disabling pain — as opposed to manageable pain.

But for argument’s sake, let’s say 50% have long term diseases or disorders of chronic pain: trigeminal neuralgia, Chronic Regional Pain Syndrome, multiple sclerosis, fibromyalgia, etc.

bigstock-Painkillers-97670Let’s say that 25% of them are on opioid pain medications such as hydrocodone, codeine, Vicodin and others.  It is that 25% that are the ones who always pay when politicians get worried about pain medication abuse.

When my pain started in 1979, there were neither the issues nor the hysteria that we have now over the prescribing and use of narcotics. I was given morphine, tincture of opium, Demerol and many others.

And I had no trouble finding pharmacies to fill my prescriptions. But that was before the days of the “prescription drug epidemic” and the reality of pain pill abuse.

As long as the media touts the drug “epidemic” and vilifies patients and doctors, the ones who get hurt are those who need these medications.

We will be seeing this again shortly as hydrocodone goes from a Schedule III drug to a Schedule II. Instead of being permitted a 180 day prescription as they are now, patients will only be able to get an initial 90 day supply. Refills cannot be called into the pharmacy and patients will have to be seen by their doctor for each new prescription. (This is only for hydrocodone with acetaminophen or aspirin, hydrocodone alone is already schedule II.)

What benefit is there to rescheduling hydrocodone? It will cost the health care system and patients financially. It will also cause more pain, as those who have difficulty getting around now will have to see their doctor more often.

There is only speculation that it will reduce abuse, the alleged reason for the rescheduling.

So what is the holdup on research? Instead of new medications, we see more of the same; opioids coming onto the market, differing only in properties, such as “extended release” or potentially less abuse potential.

It is hard when you are in constant pain to find the energy to fight the powers that be. I think that is one reason studies are not being done. We do not have a lobby and people do not see chronic pain as it truly is: Disabling, debilitating, scary, and in some instances, fatal.

We need to find the energy to get the media to spend time on us, on what chronic pain means to us individually and to society at large.

The irony is that the political and legal communities, including the DEA, have made it so we cannot get the medications we need to get enough relief to mount the fight.

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Carol Levy, Columnist

There are 13 comments for this article
  1. Bob Schubring at 11:55 pm

    The DEA has taken advantage of the power vacuum in Washington, caused by the Republican-Democrat Parties subversive agreement, not to appoint or confirm a Surgeon General to rule on the subject, of what, legally, IS a medicine. The Controlled Substances Act assigns this professional function to the Surgeon General, who is, by law, a doctor. The same Act assigns to the DEA, a clerical task: The DEA is to license doctors to dispense drugs and secure the movement of drugs between drug factories and patients.

    This act of subversion has gone on for six years. It began, apparently because the movement to legalize cannabis, had made such great progress at finding medicinal uses for substances in the cannabis plant, that any real doctor, once appointed Surgeon General, would make a finding-at-law, that Cannabis is a real medicine, and therefore, it must be available to patients for whom it is prescribed.

    The danger to Drug War backers, is that they have no escape from this. The law, as written, allows one real doctor, as Surgeon General, to overrule an entire $50 billion bureaucracy, and command it to license drugstores in all 50 states to carry cannabis products.

    Thus, Neocon Republicans who hope to revive their racist Drug War, want no Surgeon General on duty. Corrupt Democrats, who hope to extort money from the people by controlling the cannabis and alternative-healthcare industries, also want the present, patchwork system, in which states legalize cannabis and DEA continues to persecute cannabis users and growers. Under that system, the industry will always be out-of-compliance with one or another of these contradictory laws, and must constantly pay for political favors, to avoid being shut down, by whichever bureaucracy wants to be paid off.

    The problem for pain patients, is that the two rotten-to-the-core political parties, act as the jaws of a vise that is squeezing the life out of our country.

    When Ann Coulter suggests I should be beaten with a horsewhip for not voting for her pet Republican Neocons, I calmly respond that she must be off her meds or something. I wouldn’t be so crass, as to propose such irrational acts of violence as she did. I will, however, refuse to cast a vote for any politician who believes I have a duty to suffer pain for any reason.

    Please do the same, this upcoming election.

    And implore your healthy friends to consider your liberties, when they vote,

    If we’re not free to reach in our medicine cabinets when we find it necessary, how can we be a “free” country?

  2. Dr John at 5:10 pm

    I am a retired family physician with a history of trigeminal neuralgia, herniated discs at C-6 and L-5 which cause significant neuropathic pain, two episodes of shingles with post-herpetic neuralgia, and bladder cancer. I have taken 10 mg of hydrocodone on a regular basis for many years and it has helped me continue to function at a reasonably normal level. My dose has remained the same and I guard against abuse when we have guests by concealing my medication. That we have more people dying of overdoses than automobile accidents indicates that there is a significant problem in this country; but as usual, the ones who will pay the price are those who take their medicine as prescribed, do not share it with others, and guard against pilferage.

    (Please do not use my real name.)

  3. WAYNE T at 7:29 pm

    I. Agree. With pretty much everyone..
    Carol and mail you have my sincere heartfelt sympathy.

    Your American attitude to drugs is bad: both puritan and stupid it’s also self-defeating.

    I don’t think it’s too hard to identify junkies – they tend to have track Marks as they prefer to inject for greater faster, effect.

    They should ‘schedule’ acetaminophen/paracetamol – it’s 100times more dangerous than the medications we are talking about.

    I should also like to see medical marijuana widely available:- it’s usually effective no side effects, overdose impossible BTW, there’s another thread where we talk about it for those interested.

    I am not a ‘drug user’ or an addict, I am a patient: “I am not trying to get high I don’t abuse my medications, usually immediately misunderstood by doctors I speak to who apparently cant see you that if you are regularly taking (prescribed) synthetic or natural opiates & in my case there is also diazepam for back spasms ( it works wonderfully as a muscle relaxant) but they can’t see that for this reason I have a particularly high tolerance for drugs of these classes so I am regularly & seriously under medicated if I have to visit hospitals or the emergency room I in and up with about one 10th of the dose that would I normally take daily – so I suffered serious pain and will only stay in the hospital for the absolute minimum time before checking myself out and going home to take my medications. it’s ridiculous.

    Carol, I get Cluster headaches – a particularly vicious form of trigeminal neuralgia – Wikipedia quotes someone is saying it is the worst pain known to medicine.

    I could only say that from my own experience with these things which are also called suicide headaches for obvious reasons and I would agree with that categorisation. But the young doctors in the emergency rooms appear to be completely unfamiliar with cluster headaches – they think ‘oh, a bloke with a headache’ you a couple of aspirin/paracetamol and of course, it’s completely useless.

    There are only until three drugs that work/help somewhat with cluster headaches – but they MUST be administered within the first 10 minutes or so or they won’t work, and for me I need to get into a shower get my head and neck under it in my face under water that’s almost too hot to stand for about 20 minutes and I need to do that straight away or I’m likely jump out a window.

    My other chronic. Pain involve the back and neck.
    I agree completely with your comments about back surgery. In most cases I believe it to be very unwise and extremely risky. Appears to be no way these blokes actually know what they’re doing. I had scans x-rays etc and a disk was found protruding and the doctor wanted surgery “to fix it”

    So I said “great how about we make sure that it is the disc that is causing the problem…
    How about You inject a large dose of local anaesthetic around the area and we will see if the pain goes away if it does I might risk the surgery but I don’t think it will – we have no proof whatsoever that is the disk that is causing the back pain and I believe the surgery to be extremely risky”

    He wouldn’t do it muttering something about the great danger of poking needles in around the area. I suggested that surgery would involve a great deal more than a couple of injections in the area

    we parted company not on good terms.
    I work in IT in the type of job that requires me to be absolutely logical and completely right at all times. It needs intense concentration for long periods of time and you are in a situation where A missing period, bracket comma/similar and you can totally destroy intent of an entire system so I’m hardly affected by the drugs that I take for my pain. My brain is clear and my mind is sharp- I simply work better without all the pain in the back and neck and the peripheral neuropathy in my hands and feet
    Enough. About me.

    Thank you all for your relevant, cogent contributions.

    More power to you.
    😉

  4. Kurt W.G. Matthies at 3:41 pm

    ConcernedDoc — first, thanks for doing what you do — treating people who suffer with chronic pain.

    Yes, I was there for the decade of pain, pain as the 5th vital sign, and the IASP Declaration of Montreal that declared “Access to Pain Management Is a Fundamental Human Right”.

    We know more now. My dose of methadone in 2001 was amazingly high. It took me 8 years to discover that I only needed 1/4 that dose to control pain. Yet, I am a chronic painer, my opiate tolerance is very high, and I survived.

    Many ignorant physicians prescribed medications like methadone for the opiate naive or for borderline chronics — that definition we have of 3 months with pain does not always make one a chronic painer. It really all depends.

    But we learned things too. Research by Portenoy and Bennett showed that many non-terminal chronic painers need both baseline opiates and breakthrough opiates, just like the terminal, cancerous painers do.

    And millions who suffered were treated, and demand to continue to be treated. We should not abandon them.

    It may be hard to discern the junkies from those who have a medical necessity. Someday, I think we’re going to realize that junkies also have pain, and we’re going to have to find a way to treat that, too. It may be different from my pain, but something is driving them, and a certain percentage of the whole human race to self medicate — it’s been happening for 20,000 years, according to anthropologists.

    I realize that you have to balance your morals in treating those who suffer with those who would take away your medical license. But I see a world turning again. People in Florida, including practitioners, are fed up with the Draconian restrictions on treatment that were implemented to clean up a hundred or so pill mills. And 100 million across the country in pain is a significant minority — enough to topple any candidate for federal office.

    As we continue to talk, to meet, and share ideas, we will coalesce into a powerful force for change. Join and become active in your state pain society — this will be another force to affect change.

    Pain is the great epidemic in this world and our job is not finished until suffering is abolished.

  5. concerned doc at 9:32 pm

    The veritable rock and a hard place. Years ago healthcare had the decade of pain shoved down it’s collective throat. Pain as the 5th vital sign. It must be monitored and treated. Pain medicine as a specialty was in its infancy. The initial push led many patients and doctors to a position of high dosages of narcotics. As the world has changed and become more sophisticated we see that for many patients this led to addiction, poorer function, and tragic overdoses. Addicts and abusers have become more and more difficult to spot and track. The pendulum is now swinging back against the treatment of pain as seen above by patient comments. I am a physician that treats pain. I struggle daily to find balance for my patients and my medical license. I create policies and rules to protect the clinic as a whole but realize that individually it may create hardship and strain on the patient being treated. I enjoy my job and my patients. Some are a pleasure to treat, some more difficult. For some I have answers and treatments, for others I have nothing. I see the increasing pressures from pharmacies, insurance companies, regulatory agencies and the continued bad apples (addicts and abusers) that create such a bad name and stigma for those in pain who as a general rule use their medications responsibly, appropriately and safely to improve their physical function and quality of life.

  6. Kurt W.G. Matthies at 4:17 pm

    Carol, I’ve been using Sched II medications for over 20 years, every day, every month, every year.

    Even before this new “epidemic” it was rare for a licensed practitioner to issue a 90 day supply of medication. During the past few years, I’d say it is highly unlikely anyone with a DEA license to prescribe will write for a 90 day supply.

    I’ve had monthly doctor’s appointments to fill my CII medications since 2011. The costs add up.

    Also, chronic painers generally use long acting / extended release opioid analgesics. All but one long acting CII medication is very expensive — methadone. The rest — MS Contin, OxyContin, Exalgo, Opana, Duragesic, and now Zohydro, all cost many hundreds of dollars for a month’s supply.

    And these days, it’s difficult to find a pain doctor who will write for methadone.

    The war on drugs continues to complicate the life of a chronic pain patient. For those of us who are disabled and unable to work, expenses climb just for basic treatment.

    I retired in 2010 due to my disability. Now I find, just 5 years later, that I’m running out of money.

    Rescheduling of hydrocodone is another lose/win situation for chronic pain patients versus the needs of controlled substance regulators.

  7. Katherine Wolfe at 11:34 am

    Meanwhile, while the DEA is busy making sure pain patients can’t get high, there has been a resurgence of heroin use and in some places it’s reached epidemic proportions. Which for us might actually be good news, because now they’ll have something else to worry about than whether pain patients are taking pain pills.

  8. Amy R at 8:27 am

    I have atypical facial and scalp pain similar to Trigeminal Neuralgia. Initially, no doctor would even address that pain so I used the percocet I had left over from ovarian pain issues but after they took out most of the girl parts I was unable to get more percocet for that and was referred to a pain specialists. I felt so slighted by this.
    I took my time finding one I felt comfortable even making an appointment with. Initially things didn’t go so well but the second prescription worked very well. I have my life back.
    Having the right pain control has given me a significant portion of my life back. I feel well enough to drive now and have my license back. So my husband doesn’t have to spend all his free time (and vacation days) hauling me to appointments and other needs.
    My pain specialist physician knows his stuff and so does his staff. They are very understanding, rescheduling is not a big crisis – most of their patients can barely hobble in to appointments. They don’t like having to work under the federal regulations also. They wish they could write three months of scripts but they can’t.
    Though it is a big hassle to have to go see them every month I encourage anyone in chronic pain to see a pain management specialists.
    Prior to getting this medication I frequently considered suicide and never went that route because of my faith and the love of my husband. I had no life to live before I was given the right pain medication. There are better pain medications for long term chronic pain than percocet and Vicodin but usually you can only get them from pain specialists. Don’t fear the class II label – fear not ever finding the right pain management plan for you.

  9. Meg Johnson at 2:58 pm

    Certain medications like Fioricet (generic) have been rebranded with the recent downward dosage of tylenol (325mg to 300mg) and this has resulted in the generic brand going from approximately $25 a month to over one-thousand dollars a month for 60 tablets – out-of-reach for most because it is a migraine medication not covered by most insurance carriers. Fioricet (and Fiorinol) is one of the oldest migraine medications around. Someone is making a bundle off the backs of chronic migraine sufferers (who already take a bundle of preventive medications to try and prevent the migraines).

  10. Mel at 11:34 am

    Very much agree with your article. While I haven’t been suffering for the years that you have, its been long enough now where I am feeling the stigma that the media and society places on us who are in pain, and it is very unfair. I’ve had to suffer for the last 4 years without a legitimate diagnosis as to why my spine is falling apart. I’ve had 2 surgeries since 2009, and still having chronic pain and muscles spasms to the point of being bed ridden for half of my day, every day. My general MD tries very hard to treat me the best that he can, but he doesn’t have the clout within the medical community to properly diagnosis and treat the issue so he will “refer” me to specialists {neurosurgeons} who will do the surgeries. Then as soon as they have walked out of PACU, they wash their hands and act as if I’m cured. I ask them, why is my spine falling apart? How am I supposed to deal with this pain? They always say, follow up with regular attending. Since when are surgeons off the hook when they’re suggested intervention doesn’t work? They all want surgery to be the end all be all, when the truth is, most spinal surgeries FAIL, and then the patient is left with the stigma of “malingering” which that in itself is so wrong! Who would purposely fein pain to stay in bed all day? really? I’m not getting any monetary gain from all this, I’ve taken my retirement early to not have to deal with workmens comp which is like being in pre world war 2 Germany, trust me!
    Now, I’m stuck with the diagnosis on my record with OWCP {my federal’s workers comp} as Lower Back Strain. when I’ve had 2 surgeries already, one that they approved and paid for! The other I had to use my regular insurance because I didn’t have the strength or the money to fight them on. But how the hell does a back strain lead to metal plates and screws in your spine? Plus, getting my medication costs me hundreds of dollars since no specialist will spend the time to diagnosis me, I fly back and forth to another state so my general MD can write me my scripts. SInce my surgeons “healed” me, they won’t prescribe me my medications I need to have at least 6 hrs a day without pain. On top of all the bullshit with surgeons, OWCP, and the hassles of getting my script filled, my FAMILY acts like I have contagious disease. Granted, I moved thousands of miles away because of their prejudices and hangups, but when i was in need of help after surgery, crickets fell silent around my situation. They all fly free fyi, work in the airline industry.
    So as it stands, even when you have supporting diagnostic data showing your having serious, chronic, debilitating medical issues, you have surgical intervention more than once with hardware holding your spine in place, they refuse to give you the proper diagnosis, or hell, even something closely related, to have in your records to support your suffering and need for continued treatment. If I needed to get social security disability, which I should actually be on, I couldn’t because none of the surgeons would take the time to write the notes to qualify me. Guess that requires caring about your patients outside of the OR? Sorry for the rant guys, but I know I’m not the only one who is dealing with the stigma and the neglect of the medical community. I just wish there were some attorney’s out there with some balls that would take on cases such as mine, and sue the hell out of these doctors, and insurance companies who purposely improperly diagnosis someone to avoid treating their pain issues. It should be ILLEGAL!!!

  11. karen at 10:59 am

    Today l am in pain. That is nothing new. Today it hurts so much that l am nauseated. I have pain meds. But l am afraid to use them because my doctor no longer wants to prescribe them since they changed the class. He is afraid of the DEA lookiing at him closely. He is a wonderful doctor who sees mostly senior citizens with chronic diseases. Not your typical pill pusher. In fact he prescribes sparingly after other therapies fail. Unfortunately people like me will be a target. I will be labeled drug seeking.

  12. Wendy Hanson at 10:08 am

    I don’t want to see the re-scheduling take place. But you make it sound like these poor people in pain. I take morphine and percocet daily and have been visiting my doctor every 28 days for years now. Because I have to be drug tested and pick up a new script. I just think that you are looking at it backwards. People who are on vicodin are probably in a lot of pain but some of us on morphine are jumping when they say jump for some time now.

  13. Kate Johnson at 9:58 am

    The DEA have effected absolutely nothing in the “war on drugs” with the 50 billion a year they rec’v. Having people that have little to no education or understanding about medicine making medical decisions rarely works out for the benefit of the patient. The DEA could really care less if people are suffering, they have uninformed tunnel vision that allows them to make certain cancer patients and others in severe pain are denied pain medication without the slightest concern. This is part of why our suicide rate in the US is so high. More people kill themselves than are killed by others in the US. Chronic pain raises the risk of suicide significantly, but this is meaningless to the bureaucracy at the DEA. There’s no reason for this agency to exist at all. Local law enforcement is capable of policing their own jurisdiction without the interference from the federal government.