Several years ago, Mark Kleiman wrote a long, well-researched article on drug policy which was so overflowing with being sensible that it has no chance of being paid any attention to in legislative circles. Most of the article was focused on street drugs, but here’s what he wrote about pain medication:
Get drug enforcement out of the way of pain relief. Physicians and their regulators are naturally concerned about the risk of iatrogenic (treatment-induced) drug dependency. Consequently, they have tended to be sparing in their use of opiate and opioid pain relievers, even when the pain involved is extreme and the patient’s short life expectancy, as in the case of terminal cancer patients, makes addiction a largely notional problem. Better professional education has made more recent cohorts of physicians less afraid of over-prescribing painkillers than their older colleagues, but the upsurge of prescription-analgesic abuse (especially of hydrocodone [Vicodin] and oxycodone [Percodan, Oxycontin]) has generated a backlash.
Tight controls and cautious prescribing can reduce medical misuse and recreational use of prescribed drugs and the diversion of pharmaceuticals into illicit markets. A crackdown on Internet pharmacies offering on-line “prescriptions” is fully justified. But the tighter the regulation, the greater the cost and inconvenience imposed on manufacturers, physicians, pharmacists and patients. Cost and inconvenience will not only annoy those groups, it will also increase the amount of untreated pain.
Current policies are scaring physicians away from treating pain aggressively. Many doctors and medical groups now simply refuse to write prescriptions for any substance in Schedule II, the most tightly regulated group of prescription drugs, including the most potent opiate and opioid pain-relievers and the potent amphetamine stimulants. The opiate-and-stimulant combination the textbooks recommend for treating chronic pain is almost never given in practice for fear (a fear well in excess of the actual risk) of disciplinary action and criminal investigation for a physician prescribing “uppers and downers” together. It’s time to loosen up.
In Reason Magazine, Jacob Sullum describes one patient preparing to commit suicide because he couldn’t get treatment:
Hurwitz may not be the only physician in the country who is willing to prescribe narcotics for chronic pain, but there are few enough that patients travel hundreds of miles to see them. “I call it the Painful Underground Railroad,” says Dr. Harvey L. Rose, a Carmichael, California, family practitioner who, like Hurwitz, once battled state regulators who accused him of excessive prescribing. “These are people who are hurting, who have to go out of state in order to find a doctor. We still get calls from all over the country: ‘My doctor won’t give me any pain medicine.’ Or, ‘My doctor died, and the new doctor won’t touch me.’ These people are desperate.”
So desperate that, like Covillion, many contemplate or attempt suicide. In an unpublished paper, Rose tells the stories of several such patients. A 28-year-old man who underwent lumbar disk surgery after an accident at work was left with persistent pain in one leg. His doctor refused to prescribe a strong painkiller, giving him an antidepressant instead. After seeking relief from alcohol and street drugs, the man hanged himself in his garage. A 37-year-old woman who suffered from severe migraines and muscle pain unsuccessfully sought Percocet, the only drug that seemed to work, from several physicians. At one point the pain was so bad that she put a gun to her head and pulled the trigger, unaware that her husband had recently removed the bullets. A 78- year-old woman with degenerative cervical disk disease suffered from chronic back pain after undergoing surgery. A series of physicians gave her small amounts of narcotics, but not enough to relieve her pain. She tried to kill herself four times–slashing her wrists, taking overdoses of Valium and heart medication, and getting into a bathtub with an electric mixer–before she became one of Rose’s patients and started getting sufficient doses of painkiller.
Patients who cannot manage suicide on their own often turn to others for help. “We frequently see patients referred to our Pain Clinic who have considered suicide as an option, or who request physician-assisted suicide because of uncontrolled pain,” writes Dr. Kathleen M. Foley, chief of the pain service at Memorial Sloan-Kettering Cancer Center, in the Journal of Pain and Symptom Management. But as she recently told The New York Times Magazine, “those asking for assisted suicide almost always change their mind once we have their pain under control.”
One thing that supporters and opponents of assisted suicide seem to agree on is the need for better pain management. Concern about pain was an important motivation for two 1996 decisions by federal appeals courts that overturned laws against assisted suicide in New York and Washington. In the New York case, the U.S. Court of Appeals for the Second Circuit asked, “What business is it of the state to require the continuation of agony when the result is imminent and inevitable?” With the U.S. Supreme Court scheduled to hear a combined appeal of those decisions during its current term, the persistent problem of inadequate pain treatment is sure to be cited once again.
In medical journals and textbooks, the cause of this misery has a name: opiophobia. Doctors are leery of the drugs derived from opium and the synthetics that resemble them, substances like morphine and codeine, hydromorphone (Dilaudid) and meperidine (Demerol). They are leery despite the fact that, compared to other pharmaceuticals, opioids are remarkably safe: The most serious side effect of long-term use is usually constipation, whereas over-the-counter analgesics can cause stomach, kidney, and liver damage. They are leery because opioids have a double identity: They can be used to get relief or to get high, to ease physical pain or to soothe emotional distress.
Doctors are afraid of the drugs themselves, of their potency and addictiveness. And they are afraid of what might happen if they prescribe opioids to the wrong people, for the wrong reasons, or in the wrong quantities. Attracting the attention of state regulators or the Drug Enforcement Administration could mean anything from inconvenience and embarrassment to loss of their licenses and livelihoods. In the legal and cultural climate created by the eight-decade war on drugs, these two fears reinforce each other: Beliefs about the hazards of narcotics justify efforts to prevent diversion of opioids, while those efforts help sustain the beliefs. The result is untold suffering. Dr. Sidney Schnoll, a pain and addiction specialist who chairs the Division of Substance Abuse Medicine at the Medical College of Virginia, observes: “We will go to great lengths to stop addiction–which, though certainly a problem, is dwarfed by the number of people who do not get adequate pain relief. So we will cause countless people to suffer in an effort to stop a few cases of addiction. I find that appalling.”
It is appalling, and cruel, and irrational. As Matt says, it’s putting puritanism above human needs. In another post, Matt writes:
One of the most interesting findings from the happiness research literature is that human beings are remarkably good at adapting to all kinds of misfortunes. Chronic pain, however, is an exception. People either get effective treatment for their pain, or else they’re miserable. Adaptation is fairly minimum. The upshot is that from a real human welfare perspective, we ought to put a lot of weight on making sure that people with chronic pain get the best treatment possible. Minimizing addiction is a fine public policy goal, but the priority should be on making sure that people with legitimate needs can get medicine.
Unfortunately, this seems to be one of those issues that’s untouchable in Congress; it’s not a partisan issue, because majorities of both parties consist of drug war moralists who prefer to keep Americans in pain. Both parties think the DEA is better qualified than your doctor to decide how your pain need to be treated; both parties would rather have Americans in treatable but not treated agony than risk some addict somewhere getting high (which that addict probably will anyway). The brainless cruelty of our political system is one of the things that makes me rip my hair out.
Further reading: The vindictive grand jury investigation of pain-relief advocate Siobhan Reynolds, and Another Pain Doctor Raided, both by Radley Balko. And the archives of the now-defunct (because of government harassment) Pain Relief Network.
(P.S. I went back and forth about the image. But I finally decided that it means “we’re inflicting needless agony on ourselves.” And if you take “ourselves” to mean Americans, collectively, then it’s true.)
(P.P.S. One person in Congress who has decent views on pain management: Ron Paul. So there is something good about him.)
After witnessing my spouse’s journey through the world of pain management for the last 12 years I can testify to how right Kleiman and Sullum are. The treatment of chronic pain is horrific in so many ways.
One of the consequences of the situation described by Dr. Rose is that a not insignificant number of those willing to prescribe abuse their power over their patients. “Do you have a complaint or concern?” the doctor will ask. Then he’ll let you know that if you voice it, he’ll discontinue treatment. As a result, patients are rightfully afraid to let the doctor know that they’re not getting sufficient pain relief.
Then you have state medical boards, like the one in Oregon, teaching that there is a limit to how much opioid can be given for pain and a limit to how long a patient can take opioids and that it is better to let the patient suffer than to prescribe higher doses or for long periods of time. They do this even though the AMA pain relief protocols, which are in direct opposition to the OMB’s protocols, are taken directly from an Oregon Pain Management specialist. They do this even though we have known for more than 100 years that there is no maximum dose of opiates.
Another problem created by the current atmosphere is that the way pain patients are treated and the insecurity they understandably have regarding continuing pain relief encourages hoarding. Hoarding, otoh, is widely seen as a behavior exhibited by drug seekers. The need to hoard in the face of being arbitrarily cut off and the stress brought about by the fear of being caught hoarding result in stress. Stress is rarely helpful in reducing pain levels.
It’s a fucking nightmare on top of the fucking nightmare of constant pain.
While this post is important and true, it prevents me from keeping the frustration buried under other things. I am now less happy than I was 15 minutes ago.
Thanks for the links, and for giving this issue some attention.
At risk of over-pimping my own work, you might also check out the infuriating stories of Richard Paey and Bernard Rottschaefer.
http://reason.com/archives/2007/11/20/richard-paey-speaks
http://reason.com/archives/2007/08/31/sex-drugs-a-federal-prosecutio
The guy who prosecuted Paey is now running for judge. And so far, he’s unopposed.
“Hoarding, otoh, is widely seen as a behavior exhibited by drug seekers.”
Seriously??? As much as everything else about this is ridiculous, THAT is super super ridiculous.
And I’m sure this seriously complicates things if you’ve got a natural resistance to opiates.
I do somewhat– and boy did it make things a little more difficult back when I was battling endometriosis too.
Yeah, I have chronic lower back pain, and on top of that, I’m fat. What does my doctor prescribe? Weight loss, in spite of the fact that I had weight loss surgery in 1997 and now weigh more than I did before the surgery, and exercise. Yeah, I’m supposed to exercise when I’m in excruciating pain and she won’t prescribe anything stronger than ibuprofen, which doesn’t work anymore because I’ve been taking massive doses of that shit for the last 30 years (I’m talking 1600 mg 4 times a day for year after year after year). She won’t refer me to a pain management clinic, nor will she refer me to a rheumatologist for my fibromyalgia. I’m supposed to deal with this pain, and when she asks me to rate it on a scale of 1 to 10, I tell her my 10 would be a 30 on her scale of 1 to 10 because I’ve been dealing with pain for so long that I’m inured to it, in a manner of speaking. I’m not suicidal over it yet, but I can see that day coming, and she doesn’t care, and neither has any doctor I’ve seen in the last 30 years, since this pain started. I get the feeling that she would be relieved if I committed suicide, because then she wouldn’t have to deal with my frequent requests for stronger pain relief (oh, she might feel guilty, but relieved all the same).
The stories Dr. Rose describes are very sad. It is cruel that the government would rather have patinets commit suicide than get effective pain treatment.
@ Vesta44: sorry you are not being taken seriously. Many doctors are fatphobic, and this makes them resistant to prescribe efective for a variety of conditions.
Hear, hear. This has been a problem for a long time, and the core issue seems to be legislators and law enforcement sticking themselves in medical issues they have no business getting involved in. Tons of people suffer through needless pain because doctors are afraid that they’ll end up spending time and money defending their license to practice medicine or their hospital privlieges if some fool looks over their prescriptions and decides they know more about medicine than a doctor does.
I’ve been lucky so far in my life that I’ve have few instances where I’ve had pain issues, and they’ve been short-term when they’ve occurred. But what I’ve noticed is that when they do occur I get prescribed pills that contain what is chemically an OTC drug packaged in 2 or 3 times the OTC dosage. What sense does that make? I could just buy the OTC drug and take multiple pills. I don’t ever use OTC pain relief anyway because for me it’s remarkably ineffective (something about my metabolism I guess). So the last time I was at the doctor’s and got a pain prescription I handed it back and said “No, don’t give me this, it won’t work.” Of course my complaint was back pain so that makes me look like I’m drug seeking. One of these days I’ll have a real problem and I could end up like these people.
Thank you for this post. I just spent most of the wee hours of morning in the ER with another status migraine. It’s gone, but of course treating it has aggravated my fibromyalgia, so I’m typing this from bed while doing the best I can to dial down *that* pain. (My boyfriend says he knows it’s time to go to the ER when I have the “I can’t take this anymore” crying fit. He’s right, but by then I’m too pain-addled to figure that out myself. Thankfully, he’s observant.)
I’ve been extraordinarily lucky to have found a hospital and a primary care doc who take my pain seriously. A few years ago I had a rheumatologist who flat-out told me to stop taking the only two things that touch my fibro pain.
He then offered me a list of meds I *cannot* take, being cytochrome P450 deficient (simplistic version: my body can’t metabolize codeine or its derivaties, so they make me sick as hell and don’t touch the pain). When I pointed out that I cannot take any of those meds, he just said, “well, I guess you’re out of luck then, aren’t you?”
[Insert swears here]
Needless to say, I never saw him again, but I know too many people don’t have the choice, chance, or physical and mental wherewithal to find a doctor who takes their pain seriously. It’s appalling.
I strongly disagree with this statement. That certainly is an issue, but not the core issue. The core issue is, “Oh noes, drugs is bad!!!! Stop people from taking drugs! ” The futile and silly (but oh, so profitable) war on drugs is the core problem. That core issue is what encourages and enables big gubmint to get themselves involved in pain management.
Some days I think it would be easier to just by opioids off the street. At least you’d know that your supply wouldn’t be cut off on some whim or demonstration of power by your dealer.
“Some days I think it would be easier to just by opioids off the street. At least you’d know that your supply wouldn’t be cut off on some whim or demonstration of power by your dealer.”
I confess to having wondered why that isn’t something people have mentioned doing. Although I haven’t taken any measures, legal or illegal, to get pot to help with my migraines.
One of my psych meds is under tight control. I guess people use it recreationally–I’ve heard people talk about doing so–but I can’t even fathom why it would be recreational, really. For me, it’s a solution to an acute problem; it just doesn’t have a fun aspect.
Having heard stories like these for several years, I always worry that my history of minimal use of the drug (I take less than I used to) will go out the window sometime when I see a new physician. I hoard when I can.
Hoarding seems like the only rational response. It’s pretty fucked up that it’s considered to be a danger sign.
And while I basically agree with Jake Squid, cheers Ron F. I’m genuinely glad we can stand in bipartisan support of “more pain meds for people in pain.”
Almost anything you do, if you suffer chronic pain, is viewed as drug seeking behavior. Going to multiple doctors in an attempt to get help? Yeah, you’re a drug seeker. Asking for a higher dose? Drug seeker. Hoarding? Drug seeker. Questions or complaints about random drug test policy? Drug seeker. Past history of recreational drug use? You’re a drug seeker.
This gives the patient no power and tons of stress worrying about being labeled a drug seeker and cut off from the (usually minimal) relief that they are getting. It’s an abysmally designed system.
If you ever wind up with chronic pain, here are some suggestions that may help you:
Never admit to any recreational drug use. It doesn’t matter if you had a single hit off a bong when you were 14. Deny having ever touched a recreational drug. You should probably also say that you never drink alcohol. If you’ve ever gotten high or drunk, you’re probably a drug seeker.
If you have to go to more than one MD to get help, don’t report any doctor you’ve given up on. Carry your medical records with you & let the new office make copies. Hide doctor shopping as well as you’re able. Unfortunately, changing doctors because of changing health insurance coverage will be counted as doctor shopping. Doctor shopping is classic drug seeking behavior.
Never question your pain doctor. Nothing good will come of it.
When answering the doctor’s questions, pretend that you’re being questioned by the opposing lawyer at trial or an EBT. Your standard answers should be, “Yes,” “No,” “I don’t know,” or “I don’t remember.” Provide as little detail as you can while sticking to the point that you are in intolerable pain. The doctor doesn’t want to hear your story. Things that you think are important are a distraction and can and will be interpreted as a sign of drug seeking behavior.
Do not miss an appointment. Although severe pain is clearly a valid reason that a person might miss an appointment, it will be viewed as – Surprise! – drug seeking behavior. If you have to kill your partner, kidnap small children or take a bus driver hostage in order to make it to your appointment, do it.
Dress as well as you can. The richer you appear, the less likely you’ll be thought of as a drug seeker. Buy a suit, buy a cocktail dress. Look like you have money.
If you do happen to find a good doctor, one who cares more about your pain than worries that you’re scamming them for drugs, advertise the doctor everywhere you go online. People desperately need reviews of docs in order to have any chance of finding one who will help.
I’m sure that there’s more that I’ve learned over the last twelve years, but they’re not coming to mind at the moment.
Jake, can I “promote” that comment to a top level post? I think it might be useful to someone someday, and it’s more likely to be found in a search if it’s top-level.
“Dress as well as you can. The richer you appear, the less likely you’ll be thought of as a drug seeker. Buy a suit, buy a cocktail dress. Look like you have money.”
That works in so many situations…
If female, I’d expect “practice traditional markers of femininity such as wearing makeup and styling your hair” would also be on the list.
Sure you can, Amp. I’d like as many people as possible to see it in the hopes that it both helps people who need drugs to alleviate their pain and people who would like to, or are working to, change the system.
Yes, but it can backfire. If you have a particular sort of asshole as your doctor and the cause of your chronic pain is fibromyalgia then they’ll think you’re a drug seeker because people who really have fibromyalgia (regardless of the multiple diagnoses you may have from rheumatologists) don’t look like that. They wear slippers and pajamas to appointments.
Catch-22 can easily be rewritten around fibromyalgia.
I have also heard that you should never describe your pain as a “10” on the one-to-ten scale. Apparently that is considered a sign of drug-seeking. Probably most people know this anyway, but I didn’t know it when I showed up at the ER with constant vomiting (every ten minutes or so) and my worst migraine ever (the actual ER trip being prompted by the fact that my hands had started trembling, which I was worried might be due to electrolyte imbalances).
They wanted a urine sample before they’d even give me anything for the vomiting. Would have been difficult enough at any time – I can’t pee under pressure – but much more difficult when there wasn’t a bit of extra liquid in my body.
The odd thing is that doctors have offered me narcotic painkillers when I didn’t come close to needing them – muscle pull, tooth extraction, post-childbirth – but my mother-in-law had constant trouble getting refills on her prescriptions for chronic pain. Around here, we do save any of the “good” pain pills that are left over when prescriptions don’t get used up, which I’m sure counts as hoarding – but we were thankful we did, when the husband came down with a kidney stone while we were uninsured.
I note also that the trend in veterinary medicine right now seems to be towards providing more pain control, not less.
When I worked in biochem labs we worked with some very labile compounds – chemicals that would degrade quickly under room temperature and normal humidity conditions. Here’s how we would keep them stable for months or even a year or more:
1) Get some calcium chloride-based driveway/walkway de-icer. This is not the stuff that looks like rock salt, it’s the stuff that looks like little white beads.
2) Find a jar with a tight-fitting lid that the chemical bottle will fit in and has enough volume to put around a 1/2 cup of the de-icer in (more if there’s more than one or two bottles of chemicals to fit in the jar).
3) Put the calcium chloride in and then shove in the closed chemical bottle(s) and cap it tightly.
4) Put it in the freezer.
For the really labile chemicals we would additionally pull a vacumn on the jar, but that’s kind of hard to do at home.
Likewise, mandolin. People have pain and there are drugs to treat it. I’m no fan of the “War On (Some) Drugs”. There are legitimate reasons to keep dangerous drugs out of the hands of people who would bring harm to others by abusing them, but what’s going on now is far past that objective and the current issue with getting pain relief to people who need it is one of the results.
@11 – How long until presenting that kind of idealized profile becomes a sign of being a drug seeker?
That is great info to have, RonF. I appreciate it more than you can know.
@18 – You’ve ruined everything. Now comment 11 is a sign of being a drug seeker.
This is typical of any goverment invovement. Florida shut down all the so called pill mills in the Pinellas county Area. Thats all well and good . No 20 +year old should be on maitenance oxycotin. My opinion he or she should have to pay back ANY Medical expenses. Over 90% of these kids are hurt while drunk driving or trying to make the “Most Awesome YouTube Stunt”.
So what does the DEA do for the legitamite cronic suffers of pain? … they close manufacturing plants and set output production levels.
Last year more than 17,000 DIED from driving while dronk and Hundreds of thousands Innocent people were injured in these accidents. So what would you think the DEA would do? Shut down the Automobile factories … that’s the kind of reasoning they have. They are in clear violation of the Forth amendment.
Remember Oliver North? well the DEA never charged him with anything … after trading Cocaine for Arms. YES WE SUPPLIED THE CARTELS WITH ARMS. FOR COCAINE that was covertly sold right her in AMERICA. Now, Oli North is a rich Radio Host and gives speeches for the Republicans at 15 to 30 thousand a shot.
I am affraid we are the third World Country my parents warned me about !!!
Many years many medications much pain multiple back surgeries. I’d signed a contract to be honest,,,i was and i am. With time and chronic pain that I have most meds will lose effectiveness. My meds were taken away from me because I took more than prescribed and told Doc. within a week what i’d done. I no longer work without them for a year now. I asked and found meds to buy.(well!)wwyd? I use heroin now and I’ve asked Doc for help. Methodone would relieve my pain, it’s been problem free for me in the past when it was prescribed for my pain but lost to keep my CDL as it’s the ONLY drug not allowed but Doc won’t help, didn’t even care. Doc says I’m depressed (well imagine that will you?) The pain came first not depression so anti d’s are B.S. You damn right i’m depressed I’ve had enough I’m tired of tolerating this,,,this nagging throbbing leg fell asleep never ending back can’t stand up body shaking forever living pain. I think every day I live about dieing, about how after a damn good smack just one time from anything, a car ,truck ,high speed in my car into something solid something as instant as possible but I am being tough as I can be. I loved my life thats how I got into this condition. I worked hard, played harder all my life and I received good payment and reward for it. Now my reward is social security denial and blah blah blah,,,,I know ,,,,somewhere there are lots of people alot worse off,,,much worse I see them when I find the strength to go anywhere these days. My heart goes out to all of you so much . I’m so sorry for those that are having a tough time and proud as hell of those of you that find a way to stay alive and envious of the happy. I want to live so bad I want to work. Wish I had a counselor very much . I wish to make all those that’d have me live this way feel like me for just ONE day but that still can’t parallel the thousands of them I’ve lived. I am angry, resentful at times, suicidal in thought at others and regret my honesty. Clinics, Universities, P therapy, accupuncture, massage, years of it….If you havent been cut open yet think twice about letting that happen theres a fair chance that failed back may happen with each one. Not good
I have so much to add- where to start….
DAN- Not sure where you live- but you say that you had to give up Methadone- to keep CDL, but now admit to using Heroin????? I am confused.
Why not just go to a Dr and say you want to get off Heroin— and want to be on Methadone. I have Never abused any drugs so I have no clue how that all works- I just know through my Various Advanced Degrees that Methadone is used to help people off of Heroin.
I have been suffering from Chronic pain over 15+ years now. I currently have Spinal Stenosis, Degenerative joint disease of my spine, Fibromyalgia, Chronic Fatigue, Carpal Tunnel in both wrists that I just had surgery for a few weeks ago, Migraine Headaches at least 2-3 times a month – each episode lasts for like 3-4 days-which drains you mentally and physically-I get muscle spasms in my legs and arms daily, and the list goes on…
I just had a Laminectomy on L4-L5 of my lower spine- thought that was the answer to help the stenosis- Now I have even worse severe pain in the vertebrea above that that radiates into my hips- that some times just to walk to the bathroom makes my eyes tear. So in the coming week I have to go for another MRI- which could lead to another spinal surgery—
THEN as if that is not enough– NOW the Drs want to test me for Lupus!!!
I mean it is unreal- I don’t know how much more I can Physically deal with or Mentally deal with — because and I wonder why..I suffer from severe depression, Anxieties, Phobias, and Adult Attention Deficient Disorder —
I also have weight problems– I have had my thyroid tested and continue to every 3 months because both my Drs, and I are next to 99.9% sure I have Hypothyroid – but the tests keep coming up normal–so thanks to certain DEA laws and regulations I cannot be treated…until something shows…BUT It runs throughout my family –
OH and lets not leave out the obstructive sleep apnea..which the treatment was the mask and Machine thing that even on Disability was unaffordable– and I HATED IT –so I had 2 reasons to refuse it..
Yet I have been to PAIN Specialists– that told me “deal with it”, or have offered me pain meds that would not help an infant in pain,,,,I have a diagnosed high tolerance to pain meds- and when I have to be sedated- or undergo surgery it takes a larger dose of whatever they use….NOW I have no control over this- I have no clue why- I did not even know about that until various Drs. started pointing it out to me…many claim its because I am a natural red-head…who knows..SO–
I have been to many different Drs- Specialists- even Chiropractors-
So Trust me I can say I have heard soooo many things out of their mouths -that were shockingly ignorant,,,,MY VERY Favourite– and the one that always boils my blood— “If You Would Just Lose Weight”– NOW only if it were that easy-
BUT even though I do have a Dr. that has me on pain meds– the dose has been the same for 3+ years so needless to say it barely takes the edge off many days– He seems to refuse to up the dose or switch me to something else…
I have severe Allergies-and severe sick effects from any over the counter pain med- BECAUSE when I was begging for pain relief for I’d say over 2 years- I was taking incredible amounts of advil, Tylenol, naproxin, asprin, etc.. so now if I dare take any of that I immediately start heaving, sweating, lightheaded, hives, – so whats the point. AND that information is in all my Medical records.
So I have no idea– I think that all pain patients need to start writing letters to the DEA, their Drs, Insurance companies etc…AND DEMANDING proper pain relief. That is my only real answer as they say the squeaky wheel gets the attention– we need to be loud! Demanding! Persistent! Not taking NO as an answer…..
Anyway I just realized its 3:23 AM…..I need to try to sleep.
Duchesssammi, I’m sorry to hear that. It sounds really awful. Have you seen your actual thyroid numbers? I have hypothyroid and was symptomatic when my TSH was 3.5ish, and couldn’t get treatment. Even when it was over 4.5, my (then) endocrinologist didn’t want to treat it, despite the weight gain, the exhaustion, the always being cold. The American Association of Clinical Endocrinologists, however, does label a TSH over 3.0 as hypothyroid, so if you’re in that range where some doctors will treat it and some won’t, you may just need to find someone who will help.
I also hate the “if you would just lose weight” line. That’s always tossed out as a quick fix, when it’s just not.
That’s pretty standard. It seems as if the medical community has forgotten how tolerance to opioids works. They all seem to think that if you go over a certain dosage, no matter your tolerance, that you’ll die. It’s infuriating and I’m sorry that this is happening to you.
You’re certainly not alone in your experience. I don’t have much to offer in the way of advice other than asking if there are any good support groups in your area.
Funny you should all say that these doctors told you that losing weight would help. I am skinny have like 10% body fat and my doctor told me he wouldn’t operate on my neck because i am too healthy and too young….Bottom line—-move to amsterdam.
My family doctor just told me that he will never prescribe me painkillers, not even tylenol 3, and if I have a problem with that, then I need to find another doctor. This is after he diagnosed that on top of fibromyalgia, I have osteoarthritis, degenerative disc disease, two herniated discs, and am going through severe case of siatica.
I asked for something that would give me some relief when I was in acute pain. His prescription was a large dose of condescension, humiliation and alienation. FAIL!
Well if doctors didn’t have to fear huge malpractice lawsuits maybe they could prescribe pain medication more freely?
I’ve been planning my escape from the totally consuming 15 year journey with pain so severe that my times of joy and love of life are almost nonexistent now.
My Doctor who started off so kind and understanding of my pain and insistent that I take the morphine as I was unwilling to take enough from day one, has handed me off to a nurse practitioner who not only treats me as a drug seeker but has resorted to manufacturing a record that varies from the factual truth. My last visit was even an ultimatum from this nurse. When I asked to speak to my doctor my request was flatly rejected.
Here’s the deal, I don’t care about the external pressures on those who have chosen to practice pain management. My physician took an oath. He has been paid well, in excess of $600,000 per year for the last 20 years. Now whenever anyone tries to come between me and my physician, it is his obligation to fight them with every asset to ensure that doesn’t stand! Instead he hires a nurse to insulate himself from “their” scrutiny.
I am without option very in touch with my pain. I can describe it to a level of detail that make me sick to my stomach at the very thought. It is multi-facited and the various sources do not respond to the same pain medications. The traumatic injuries I suffered 40 years ago respond to opioids. The neuropathic pain does not. As the later is 70% of my pain I had to find something on my own and cannabinoids, though not completely effective have proven helpful. you now know the ultimatum choose one or the other. ( note: I fully disclosed all drug use with my physician never holding back)
Since the Nurses decission, I have been planning my death. Not my normal life-loving joyful nature, but I am done.
Sid,
I’m terribly sorry about your situation.
If you haven’t already, I recommend that you contact http://www.suicidepreventionlifeline.org/ or some other suicide and crisis help organization.
You may also want to consider what black market resources exist in your area for the opioids you need. I know that is not a great suggestion or an easy one but, if you’re up to the effort, it may be worthwhile.
Sid, where are you living, what state?
Thank you for this blog. I very recently had my left leg amputated just below the knee because of a BAD infection (vancomycin-resistant MRSA). While recovering in the hospital, I was given I.V. morphine. When they sent me home, they gave me a script for generic Percocet; the 5-325 oxycodone-acetominophen stuff with the instructions of 2 tabs every 4-6 hours. Fine. I took it every 6 hours so 2 doses a day, 4 pills total. When they ran out, I asked my GP for a refill and I got 40 pills (the original script was 120 pills) with the same instructions. No refills on either. So the 40 pills last 10 days and I ask for a refill. Man, it was like I was suddenly some kind of crazed junkie. He finally refills it after 3 days of no pain meds (I was taking 800 mg of ibuprofen every 4 hours with little effect) but this time it is 30 pills with 1 pill every 12 hours. Oh, and I am supposed to be referred to “pain management”. WTF? I’ll post here what happens next.
(Please read this and respond) I was injured in a bad car accident four years ago a week after my baby was born . i fractured five vert. and have six bulging disks and cant get anything more than over the counter med from any dr. I live in mass. and this state has the best Dr.s in the USA and there all ass holes. i have seen over twenty diff. types of Dr.s now and they all give me the same answer NO!!!!!!. I have even had huge arguments with Dr.s and asked them how they can sleep at night! The only way u can get any type of pain med is if u get it off the streets i haven’t gone that far yet , but have thought about it every day for the past four years. I am starting a suit against the gov for this i feel that this is inhumane and feel it needs to be treated pls send me your name and your issue and adress if you want in. My adress is 14 Whitney dr. Peabodody MA. . This has gone far enough i am 32 and want my life back my freind’s fam. member last year drove to a cabin in the woods and shot himself in the head cuz he couldn’t get any treatment for his back pain , and thats not gonna happen to me. If u are dealing with all the same issues pls get on board and rite to me with your name address, and issue on how u have been treated trust me we need a class action suit to accomplish anything. I have allready called news channels to report my problem and was told its not a big enough problem. Well if they took there heads out of there ass’s then maybe they would look at the domino affect it has started do to ppl not working, buying drugs off the streets, creating mental issues that seem to trinkle down society, and so on . this is a cancer of our nation and needs to be looked at threw gods eyes . like they say in god we trust . my e mail address is jmblock31@hotmail.com pls lets do something about this before it takes one of your fam. life even if u dont have pain anymore but u have delt with this pls help us take this to superior court or even to supreme court by writing to get theese Dr.s to do what the are paid to do treat us . Once again something needs to be done and if u r in pain but cant get treated pls take down my name and address and lets get this going cuz if your in the same place i am with this issue i know u dont have anything better to do than to rite a letter to get somthing done what about our PAIN and suffering i thought we were all the same and created all as equals why do u think god put opium on this world of ours and remember if the goverment can take large amounts of this narcotic and fill fort nocks with is i think we as the ppl that need it should receive it .
I WAS ON 60mi oxy 3 times a day,with ZANAX IN THE MORNING AND AT NOON.1 ABEINW/5MIL.VALUM FOR SLEEPING DISORDER.MY PEICE OF SHIT DAUTER WAS STEELLING MY PILLS.THAT MADE IT VERY HARD. BUT MY PAIN ,AND LIFE WAS IN CHECK.THIS WAS IN ARDMORE WITH DR. BAKER FORE. I HAD TO GET OFF , BUT NOW SHE,S DEAD FROM O.D.
I NEED TO GET BACK ON THE SAME MEDS.I,M ON6 HYDROCODON-10
W/ VALUM AND ZANEZ,AND ITS NOT STRONG ENOGH.I,M 57 YRS. OLD W/ H-C AND A DIABETIC TYPE TWO.I HAVE IT UNDER CONTROL.
MT DISSABILITY FOR MEICARE STARTS THIS JANUARY.MY DISSABILITY
IS $800.I CAN,T AFORD TO WATCH MY T.V. I GO TO FOOD BANKS FOR FOOD.I DON,T WANT TO SELL MY DRUGS I NEED THEM FOR TO LIVE WITH OUT MAJOR PAIN.WHO IN OKLAHOMA WILL HELP ME?
465 HARR DR.#G midwest city OK.73110 580-277-0653 (TOM)
I have sle lupis and nerve damage and painful headaches since my doctor retired 3 years ago i have been through the wash i have had my pain managed till he retired ive been to countless doctors i can not find 1 to help me i have thought of suicide but cant do it but the pain has got that bad i dont get what has hapend im 45 years old i have never missused my meds always passed all their pee ans blood tests i didnt ask to be born with sle or nerve damage this country has to change for the people that want to lead a somewhat pain free life i cant even get up in the morning or be happy cause pain im sick of it and i shouldnt even think of takeing my life to be out of pain
Hoarding? If my wife has one extra pill the doc takes it away. Then we go to the pharmacy and they don’t have it come back in 3 days????????? What if life happens —— you still need medication. Let’s kill the diabetics next! Maybe that will save the economy. I’m a diabetic and suffer from chronic pain as well – 3 back surgeries and 5 blown discs in my neck!
i had surgery for my neck the pain is intolreable i had a mri saterday then we take it from there i got to have a nother surgery he said he going tio take me off my meds i dont know wat to do im up all mnite in pain
It is 3:25 am and I just woke from sleep with my chronic pain. I have DDD, fibro, chronic complex migraines, arthritus,Knee pain, foot pain, tendonopathy , platars facitus, carpul tunnel, distended bladder from hysterectomy ( caused from 4 major problems) COPD and most likely emphesema sp?..
I am 52 years old and was in 2 bad car accidents. I have been seeking medical care for all of this for 13 years now and today I got a call from my Dr. saying they cannot refer me to any other Drs. for a second opinion. The pain clinic they sent me to said it was “JUST ARTHRITUS” and to go into therapy. Which my primary would not prescribe a second time because medicaid only allows 4 sessions. 4 sessions will do nothing to help with my ongoing medical problems.
I like many of you here am considering suicide. This is no way to have to live. I suffer daily and get no relief whatsoever. My life is over. I never leave my apartment and i sleep as much as I can to get soem relief but teh pain always wakes me and the daily cycle begins over again.
My last two visits to my primary ended with me in tears begging for her to help me , only to get a big flat No!. She said she would not be responsible for me becoming addicted to pain meds. I do not know where to turn and I am so tired of living each day in unbearable pain. I used to be a very active person and loved my life. Now I just want it to be over.
Contact me I will try to help with your pain leave msg and location and a way
to contact you quickly
dr_dr@aol.com
I am so sorry to hear these stories.. I, like most of you, have chronic pain.
I would love to ban together and get something done about how we are treated and then thrown to the curb… but how do you do this? Any time someone speaks up about this issue they are labeled “DRUG ADDICT”. I can see it now… “A bunch of “druggies” banned together to end the restrictions on opioids”..
I have been going to a pain mgmt dr (actually I only get to see the np) for 2 years now. I have been on opioid pain therapy for 12 years – trying everything from pt- many times to the bs injections. The pain medication has been the only thing that has helped.
My pain mgmt- or so-called pain management is now pushing me out the door. I (like an ass) was honest with the np last month and told her I had a very bad pain episode and nothing I did could relieve it (oxy, Motrin, muscle relaxers, heat, cold.. etc).
I was not asking for more meds- or even an increase.. just when she asked how I was doing, I told her. BIG MISTAKE.
She then said she is taking me off the oxy and I can just take the motrin. Okay- so if she thinks that will help my pain why does she have me on 60mg oxycotin 3x a day and 10mg oxycodone for breakthrough? So I’m suppose to go from medication that helps me to a medication that will cause stomach, liver & kidney failure? Or start using herion as an alternative to ending my life cause im in so much pain & dont want to leave my 4 children motherless?
I feel so bad even listing what I am taking after spending the last 48 hours reading stories online where people with extreme pain can’t even get 1 percocet.
I have jumped through every single hoop pain mgmt has asked me to- from the completely ridiculous, changing my last name (Can you believe they MADE me do this? Not for any legit reason either) to signing a “contract”, urine tests- always clean.. pill counts with my appts every month, pt 2x a month- I never whined or questioned them ever.
Something needs to be done. NOW.
I must have read 20 stories where the ending is about ending their life.
Save 1 junkie by killing 25 people that have legit pain. That makes sense.
And if the DEA think by banning opioids they are helping solve the “war on drugs” they need to wake up- Addicts are addicts and they WILL find something else to abuse!
This situation has become very bad i was in the doctors office last month and you can hear through the walls because its very quiet in the room im in and the other person is right next door this lady had to be in her 60s she was beging the doctor to please give her roxacoadone bk to her i herd everything clear as they were in the room with me he told her no she said she was not takeing no more injections she had a big freezer baggie full of meds in the waiting room she was crying it was heart breaking to hear this 60 sum year old lady in pain you could tell the way she walked horrible i have sle lupis / ra i cant get no help either i can only imagine being 60 im45 if it keeps going like this god help us all i had a good doctor that understood my problems unfortutulantly he retired i had this doc sicnce i was diag with nerve dam /sle /ra i lost i hate living we that have lagit problems need help in this country bad does anyone in the health prof listen we have had suicides here robberies of pharmacies what else needs to happen
What if we report our doctors so that they are investigated when they refuse to treat our legitimate illnesses? I am “Totally & Permanently Disabled since 2001. My Primary Care Dr quit her practice to leave the state and move back with her family. My new PC immediatley cut me off the meds that have been allowing me to live a somewhat ‘normal’ life. (fentanyl patches, with hydrocodone for breakthrough pain) I have been careful not to increase my dosage, by periodically flushing my system so that the drug keeps working. I still live in pain but it has been mostly manageble. Now- I cannot even get out of bed when I don’t have the meds. I can no longer participate in my own life. The a**hole prescribed antidepressants & NSAID both of which have awful side effects ; I don’t take them because they do nothing for me. ( The primary warning of the anti-depressant is SUICIDAL THOUGHTS) He would not even look at my history. I am on a wait list to get into a pain clinic…Thankfully, because of my periodic flushing I have some patches set aside for when I have to do things like laundry, etc (I live alone) and hope I have enough to get through the wait period.
I know these are older posts but isn’t it sad that Oregon and Washington state have the assisted suicide laws where you don’t even have to be in pain but the Doctor gives you two bottles of barbituates to kill yourself !
I guess it is a way to get rid of unhealthy people. I came across a website Not Dead Yet and they have it together. The laws are discriminatory against pain patients.
I am so disappointed the number of pain patients that do not know these laws are taking effect and the media is not covering the problem but showing how the government is taking care of those drug abusers who are taking prescription drugs and the big bad pharmacy companies are making too much money.
Please read the Washington State Pain Law as it is the example other states are adopting and read about the organizations going before Congress and demanding opoid changes so that overdoses are less.
These laws state that Physicians that prescribe opoids can be prosecueted and the fear is causing Doctors to quit doing so.
As for appearing drug seeking, watch saying drugs, always use the word “medication” and it enforces medical treatment.
Pain levels _ I kept a pain dairy and brought it in as it showed when I had pain, the triggers, what steps I took and showed that I am trying to alleve the pain.
Also, always seek a Doctor in a pain speciality group that includes medication therapy. My Doctor uses counseling, spinal injections, medication therapy, anti depressants, Neurotin (for neuropathic pain), Bio Feedback, Physical Therapy (I use myofascial therapy), heat, topical pain relief.
I sign a contract, pee every month, give a written progress. Do not put on questionnare that what they are doing is not working and make sure you put your pain is getting better or they will drop you for not assisting you.
I have told a doctor that my pinched nerve feels like it he had a clothes pin placed on his penis and had to wear it all the time. (I had an established rapport) I told him my fibromylagia felt as I was a porcupine with the pines inside out and sticking me or beat up like a baseball bat. He understood it.
Be sure to have your Vitamin levls checked and hormone panels-Most pain patients have low B3 and immune problems.
I am concerned that the American Pain Foundation (Great Resource esp for Vets and great brochures) the Pain Relief Network, National Foundation for Treatment of Pain (Dr Hochman is sorely missed after his death).
I encourage pain patients to join and association to keep up with these topics I am signed up with paintopics.org and they send out e newsletters and I love their articles and their resource page has over 250 items.
Dr. Forest Teennat’s Survival Handbook for Intractable Pain Patient and his Pain Journal are great resources and I re read often. His articles on Howard Huges pain journey and just recently President Kennedys Pain Journal.
I enjoyed your blog and please spread the word, we had to become a strong voice for our care or we will be lined up at the assisted suicide clinic and you can easily get medication there (Sad Sad World we live )
I’ve been untreated with Fibromyalgia and Scholiosis for most of my life, not to mention that my one leg is longer than the other putting massive strain on my hips and knees. Being 23, I get absolutely no cooperation from Doctors, period. What I do get is a condescending look and talked down to like I was a Junkie before I even describe my health. When did our system become so distrustful and steadfast that young males CAN’T have chronic pain? My spine is so misshapen I feel like a freak and my pain has destroyed every dream I’ve ever had. Every non-narcotic therapy I’ve tried has been incredibly unsuccessful and I have no faith in America ever growing any common sense. So are people in pain suicidal, absolutely. Why wouldn’t I be depressed seeing my youth going by while I cancel more plans with friends because the pain flared up so horribly I couldn’t even get into the shower without taking breaks.
I WAS WITH BACK PAIN AT AGE 19 FROM A WORK ACCIDENT. BECAUSE THE MRI DID NOT SHOW ANYTHING THEY CONSIDERED SERIOUS, OF COURSE I COULD NOT BE IN AS SEVERE PAIN AS I WAS EXPLAINING. THEY NATURALLY DID USED THE EXCUSE OF ADDICTION. I WAS CLOSE TO SUICIDE. I EVEN TOLD ONE OF DR.S, HE DID NOTHING. FINALLY I FOUND A DR WHO BELIEVED ME. HE SAVED MY LIFE. THEN MY INSURANCE WAS LOST. I HEARD ABOUT METHADONE CLINICS THINKING IT WOULD BE AFFORDABLE. I WENT TO THE LIBRARY AND LOOKED IT UP, IT WAS LISTED FIRST AND FOREMOST AS A PAINKILLER. IT WAS FOUND OUT LATER IT HELPS PEOPLE WITH OPIATE CRAVINGS. IT WORKED WONDERS FOR MY PAIN. EVENTUALLY I PAID THE DR. THAT HELPED ME OUT. HE WELCOMED ME WITH OPEN ARMS. I TOLD HIM WHAT I HAD DONE AND HE UNDERSTOOD WHY. HE PRESCRIBED ME OCS THE FIRST MONTH BACK. I TOLD HIM MY NEXT APPT. I WOULD RATHER TAKE METHADONE, IT WORKS GREAT FOR ME. BUT WHEN I TELL PEOPLE THE MEDICATION THAT I AM TAKING THEY THINK I AM SOME KIND OF JUNKIE. IT TOOK ME FOUR YEARS TO CONVINCE MY DAD IT WASN’T CRYSTAL METHAMPHETAMINE. EVERY TIME A COPS OR BOOKING SHOW COMES ON THERE IS SOMEONE WITH NO TEETH, SCRATCHING AND ON ANOTHER PLANET CLAIMING TO BE ON METHADONE. I RAISED MY DAUGHTER WHILE USING METHADONE FOR PAIN. I USED TO SELF MEDICATE, DRINK AND BUY OF THE STREET BEFORE I FOUND A DR THAT UNDERSTOOD THE IMPORTANCE OF TREATING PEOPLE WHO ARE IN PAIN. REMEMBER THIS… DO YOU WANT QUALITY OF LIFE OR QUANTITY OF LIFE. MY ADVICE IS TO SEEK OUT A DR. THAT WAS IN THE ARMED FORCES, THEY SEEM MORE WILLING TO LISTEN TO THE PATIENT RATHER THAN WORRY ABOUT CONSEQUENCES. BY THE WAY I AM ALMOST 40 NOW. GOD BLESS. KEEP FIGHTING FOR YOUR RIGHT!
Well, I just read of course what we all know to be true and is not going to get any better! Like most, I have the real pain! Pain was so bad I didn’t fill the needle go in to my hip the last time, that’s pain. I not only have real pain I have AVMs in my stomach, they have been burned twice and cant take over the counter stuff. I have a type of gout in my joints so bad that when it rains , I have ask God to let me die early once . My spine looks like swiss cheese and a knee that can`t be fixed. I just fell down some stairs last week and pulled all out of my rt leg . I cant take opioids of any kind and they took darvon and such off the market. I know, Im not the only one in this fix ! HA HA ,I cant take tramadol because I have SVT /AF it slows my heart. I have cyst all in my liver and spleen form hep A when I was 14 yrs old and no its not from drugs. I am 60 1/2 now. like I said its not going to get any better! My Dr not only will not give me any thing but says when I get bad , He`s not real sure what I can take! I have never been on any thing for along time and I am glad for this reason. I still get treated like I want drugs from the ER. When I fell the other day, I strained all the back of my rt leg and the bakers cyst are in full spill, the bones in my rt foot came up to the top leaving me with sores that will not heal now, Because I didn’t break it , I was sent home to wait for my Dr and then the Ortho man to see me the next week , with no pain meds! I wasn’t asking for pity just alittle something for my pain ! HA HA again.When I ask to go to a pain Dr once they said I could go back to see the Bone Dr again . Well that is life in The Good Old US of A
that’s why i don’t vote anymore. no justice or liberty in this country. its all about what the government can control. just like political people, they went to school for politics. a doctor go to med school. how can someone in two different fields give advise on how one should do their job. people been dying for years from drunk driving, but has the government ban beer and liquor, nope. case closed
I have been on oxycodone for over 17 years and it has always made life a lot better. 2yrs ago i asked my doctor what he thought about taking to much acetomenphin his comment at that time was that he thought it was being blown out of proportion. 1.5 yrs ago my dose was cut from 6-10 mg to 5-7.5MG PER DAY. it is not that my pain is getting less svere,quite the opposite. I HAVE DAYS WHEN I CANT EVEN MOVE.NOW HE WANTS TO REPEAT CT’S,MRI’s,EMG AND SO ON. AFTER 19 SURGERIES MOST OF THEM WORTHLESS THEY THINK I SHOULD HAVE MORE. WELL I WILL TURN TO STREET DRUGS.