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Angelika Byczkowski Angelika Byczkowski

Why We Must Not Let Addiction Hysteria Kill Off Zohydro


As a chronic pain patient, a misdirected crusade against opioids has significantly added to my suffering. I'm even afraid to ask my doctor about taking Zohydro. Let's go with the science, not the scare tactics.

14 Substance
Score


The panic obscures the facts. Photo via

The panic obscures the facts. Photo via

People with addiction may use opioids to escape from life, but pain patients use them to participate in life. My chronic pain from Ehlers-Danlos Syndrome is invisible. I appear as athletic and competent as ever, but under that facade my body has been falling apart for decades.

EDS is due to a genetic defect that impairs the production of collagen, which results in defective connective tissue that isn’t sturdy enough to do its job. Since all tissues of our bodies (even bones) are made with or held together by connective tissue, EDS can impair all body parts. Because it’s genetic there is no cure; only the symptoms can be treated.

The pain arises from a constant series of small joint and tissue injuries that become cumulative. I hurt both from movement and lack of movement, so there’s no avoiding pain. Of course doctors were skeptical when I came to them with just descriptions of my pain—because soft tissues don’t show up well on standard medical scans, the findings were always unremarkable.

Before my pain became chronic and overwhelming, I was an endurance athlete (running, riding horses, riding bicycles), so I was tough and no stranger to normal pain. I believed in “no pain, no gain.” But my pain from EDS is different: more pervasive, persistent, disabling and totally out of my control. No one without chronic pain should presume to understand what it’s like to live with it and make judgments on how much suffering a person should endure. This is a basic human problem: It’s almost impossible to empathize with a situation that’s completely foreign to us (imagine blindness).

Since 1995, I’ve been managing my pain with opioids: extended-release OxyContin (oxycodone) to lower the volume of the constant background pain and intermittent Vicodin/Norco (hydrocodone) for “breakthrough” pain, fluctuations or incidents of more intense pain. I, and the many others like me, am evidence that long-term opioid therapy definitely works, even though it has not been possible to design an ethical scientific experiment to prove it.

Advocacy organizations, fueled by the righteous anger of former addicts and parents whose children have overdosed, have launched a misdirected campaign against Zohydro as a second “Oxy epidemic” in the making.

Last fall, the FDA approved a new opioid painkiller, Zohydro, an extended-release hydrocodone medication intended for chronic pain patients who can’t use other long-acting opioids like OxyContin. The problem with other hydrocodone formulations, like Vicodin and Norco, is that they contain acetaminophen (Tylenol), which has been found to cause liver damage with the prolonged high doses needed for chronic pain control. In addition, they are all instant-release, lasting only four to six hours and therefore requiring multiple doses daily. Zohydro addresses both of these issues: There is no acetaminophen and it is a timed-release capsule that lasts up to 12 hours.

For me, Zohydro would be a good alternative to the OxyContin I currently take because hydrocodone seems to provide me better pain relief than oxycodone. I could use long-acting Zohydro for my consistent pain and immediate-acting Vicodin for pain flares, but I’m afraid to even ask my doctor about it. I don’t want to make any changes to my opioid regimen that could draw attention to me. Questions about Zohydro could arouse suspicions of “drug seeking” and then some clinic administrator could arbitrarily decide I shouldn’t have opioids at all.

This absurd situation is the result of an anti-opioid hysteria whipped up by the media and an army of self-proclaimed drug warriors. Advocacy organizations, fueled by the righteous anger of former addicts and parents whose children have overdosed, have launched a misdirected campaign against this new drug. Instead of focusing on the addiction that caused their losses, they are spreading alarm that a second “Oxy epidemic” is in the making. A complex medical issue has been turned into a dramatic legislative circus, with some governors catering to their frightened constituents by trying to block Zohydro sales in their states. Attorneys general in more than half the states are joining the drug warriors to demand that the FDA withdraw its approval. They are asking for a legal change based not on scientific evidence but on the mere possibility that the drug might be misused. That’s a scary precedent.

After consistent bombardment by this hysteria, any discussion about the pain-relieving, sanity-preserving benefits of opioids and their legitimate use now elicits knee-jerk resistance. Especially because it was approved without misuse-deterrent features, which have been of limited usefulness, the FDA’s approval of Zohydro has added fuel to the opioid “use vs. abuse” debate. 

I’m incredulous at how many people, even doctors, believe that addiction is an inevitable consequence of opioid therapy. This is simply not true. These are the facts: Only one-third of people find opioids pleasurable; less than a quarter of those who take opioids recreationally get addicted; and a mere 1% or 2% get addicted when opioids are taken for pain.

Unfortunately, the current panic has obscured these facts. In this media echo chamber, there is little concern that much of what passes for factual information about opioids and addiction is fraudulent. Almost anyone with the slightest experience with drugs and addiction can sell themselves as an “expert.” The media trot out a senator or advocate or parent to tell horrifying stories of addiction and pontificate on the evils of opioids. Scientific standards, pain-medicine expertise and the voices of pain patients do not apply. The negative stereotype of anyone taking opioids explains why legitimate patients don’t stand up to be counted, but hide and remain silent.

Even as a high-functioning tech worker in Silicon Valley, my opioid prescription put me in the crosshairs of the drug-war bureaucracy and media. Like virtually all opioid users, I was lumped together with reckless teenagers, drug dealers and the rest.

Earlier on the day that the FDA announced its long-awaited decision on Zohydro, the agency also announced that it would recommend moving drugs like Vicodin to the restrictive Schedule II class of medications. This would mean that doctors could no longer call in prescriptions to pharmacies and patients could no longer get automatic refills, adding another cumbersome (and most likely ineffective) layer of regulation. It only creates more roadblocks for legitimate doctors and patients trying to follow the rules. However, criminals don’t follow the rules, and they’ll manage to circumvent these restrictions, just as they have for OxyContin (which is already Schedule II). Only someone who has no understanding of addiction could believe that creating this restriction, which uses more scarce physician resources and requires more travel, money, time and paperwork from patients, will put a dent in the misuse of narcotic painkillers.

Zohydro would be a good alternative to the OxyContin I currently take because hydrocodone seems to provide me better pain relief than oxycodone, but I’m afraid to even ask my doctor about it.

The manufactured crisis around Zohydro makes little distinction between recreational users/addicts and pain patients, and neither do these new regulations. But all of it has profoundly negative effects in the lives of people with chronic pain and in how we are treated by doctors, pharmacists other healthcare providers and, not least, the general public.

The regulations add another monthly burden for us: having to make an appointment, drive to the doctor to get the prescription, then drive to the pharmacy, and wait and wait. Standing around for up to an hour with sharp back pain not only is torture but also gives the pain from driving a head start on my way home.

And these days there’s no guarantee an opioid prescription will be filled. Pharmacists have taken the initiative in profiling patients, deciding who is and isn’t an addict, and denying them service as they see fit. They feel justified overriding the doctor’s orders if they believe someone is an addict. Some pharmacy chains have been punished for previously allowing too many opioids to be dispensed, so they now have quotas on their shipments. On the 12th of one month, I was told they didn’t have my pain medication in stock and couldn’t order any until the next month.

Because they control my access to pain relief, my doctors have complete control over my quality of life. When my original prescribing doctor retired, I entered a nightmare. My condition changed from being a well-cared-for and still high-functioning pain patient to a depressed, angry and desperate “drug seeker.” I tried one expensive doctor after another, and most believed I was malingering. They were so sure that their specific treatment would work that when it didn’t, they took it as proof that I wasn’t in pain but only wanted opioids. The harder I tried to persuade them that they were wrong, the more I sounded like a “drug seeker.”

Pain puts me at the mercy of healthcare providers. Anyone who has the ability to add something to my medical chart can destroy my chances for getting pain relief in the future with a little comment about “drug seeking” or “non-compliant patient” for refusing yet another series of scans and injections that have already proved ineffective for me.

This kind of rejection is common for pain patients. I learned that I’m not the only one who ends up crying out in the car after pain management appointments. We can be traumatized by callous attitudes—suspicion, hostility, denigration, belittlement and scolding—from pain doctors. Such rejection is almost unheard of in other branches of medicine, but is accepted from pain doctors because they have to deal with some proportion of liars, thieves and criminals among their patients. But why should other people’s behavior determine my access to the only pain relief that works for me?

I always assumed that opioids weren’t a permanent solution, but experience has shown me that without them I would have to spend the rest of my life on the couch. Aging magnifies the damage from EDS, so my pain has worsened over the decades, with the result that I have had to increase my dosages over time. (I’m still below what’s considered “high dose” and have never taken more than prescribed.) Some critics insist that this is the dreaded effect of tolerance that will eventually make me immune to painkillers, but age-related increasing pain is just as valid an explanation. Swinging a leg over my bicycle used to give me a quick pinch, but now a painful muscle spasm stops me.

The public has been so misled by the media’s anti-opioid hysteria that many believe that any opioid is addictive from the first dose and therefore all pain patients are instantly addicts.

I have been investigating medical and alternative treatments for decades and have relied on opioids for the last 19 years while waiting for a cure that never materialized. I’ve tried counseling, physical therapy, over a dozen different medical specialists and their medications, pain workshops and alternative treatments (ayurvedic, chiropractor, acupuncture, yoga, Pilates, massage, biofeedback, meditation). None of them kept my pain from becoming disabling.

I went to a world-class pain management center, hoping to find alternative ways to manage my condition. Instead, after a single consultation, I was urged to go into an addiction recovery program. At this famous institution, instead of being introduced to the latest treatment modalities, my long struggle with pain was labeled as an addiction. Insisting that addiction was definitely not my problem was labeled “denial”—a circular argument—and I was told to stop taking my opioid pain medications. This simplistic “just say no” approach was a terrible letdown. I had hoped to learn other ways to control my pain before I stopped using the only palliative I have, not the other way around.

The public has been so misled by the media’s anti-opioid hysteria that many believe that any opioid is addictive from the first dose and therefore all pain patients are instantly addicts. The reality is that taking opioids recreationally has different physiological and psychological effects than taking them for pain. Pain uses up all our body’s own feel-good, pain-relieving chemicals (endogenous opioids), creating a misery-inducing deficit and allowing the pain to increase without limit. Taking extra opioids for pain helps restore the normal balance. But when taken without pain or in doses higher than necessary, these feel-good chemicals are boosted to excess, inducing euphoria and a craving for more.

Because of this opioids-equal-addiction assumption, I hid my use of them until recently, even from friends. I was mortified when a co-worker once noticed a Vicodin tablet I had dropped between my desk and the wall. Before I could say anything, she picked it up and handed it to me, saying, “Here’s your Vicodin,” with a little smile. I braced myself for a visit from HR that never came. If I had been forced to explain my use of narcotics at work, where I was still functioning normally, I was afraid I’d be disbelieved, blacklisted as an addict and have my career ruined.

Public opinion should not be allowed to drive medical or scientific decisions. The recent focus on opioid addiction and Zohydro in particular completely overlooks that fact that opioids have been serving a critical purpose for thousands of years. Opioids are not the problem—addiction is. But addiction is a complex medical and social issue, and rather than treat it, it’s much easier to demonize a substance.

I have struggled to maintain a normal life. I had to give up hiking, running, racing horses, 100-mile per day bike rides, yoga, swimming, multi-day bike camping trips and working a full-time job. And I know there will be further losses and pain with the normal aging process.

Zohydro is only one of many different opioids on the market and singling it out for special treatment will not stem the tide of addiction. Addiction is in the person, not the drug, and desperate addicts will simply find some other opioid, like heroin, to feed their craving. We pain patients don’t have that option.

Until she was disabled by EDS and fibromyalgia, Angelika Byczkowski was a high-tech IT maven at Apple and Yahoo. She lives in a cabin in the redwood forests of the Santa Cruz Mountains with her husband and two four-legged kids. Her essays have been published in several healthcare blogs, including Stanford’s ScopeKevin MD and Occupy Healthcare. Her blog is here


19 Comments

19 comments on “Why We Must Not Let Addiction Hysteria Kill Off Zohydro

    John Dough

    “Because they control my access to pain relief, my doctors have complete control over my quality of life. When my original prescribing doctor retired, I entered a nightmare. My condition changed from being a well-cared-for and still high-functioning pain patient to a depressed, angry and desperate “drug seeker.” I tried one expensive doctor after another, and most believed I was malingering. They were so sure that their specific treatment would work that when it didn’t, they took it as proof that I wasn’t in pain but only wanted opioids. The harder I tried to persuade them that they were wrong, the more I sounded like a “drug seeker.”

    Thank u 4 this piece. Wow story of my recent life. I suffer from dibilitating panic attacks and have recently lost my Klonopin prescriber of 8+ years. My PA I’d been seeing for the same duration is/was (I fired him as a provider) a devout Mormon who I believe let his personal opinion of me or maybe the world override his medical ethics, right down to putting spiteful notes in my chart. Finding a legit new provider was the bane of my existance for over 4 months and in the meantime I had to go thru the degradation of trying to explain my situation to several new doctors, my PO, therapist, etc. The docs I saw (few in the area take my form of Medicare) were guarded and suspicious evn tho I’d tried EVERYTHING over the decades from Neurontin to Vistaril (NOT true anxiety meds btw but many providers use them as such) to Xanax and only the Klonopin worked halfway decent at helping me function after exhausting all other attempts. This Physician Assistant fighting me the whole way. It got to the point where I felt bullied, belittled, and treated as a second class citizen, and wanted to just lay down and give up. Anyway I used an online service and found a great physician, not great b/c he handed me a script with x refills but great because he was compassionate and actually listened. I’m a legitimate patient and my problem was that other people’s drug abuse somehow made me less credible (which is extremely unfair), our lack of accessible providers, and the media demonization that turn an old-school guy like my (new) provider from a doctor giving a patient treatment into a guy putting his neck on the line to help me with the only thing that’s worked. And its just wrong.

    Drug seeking? You bet! Seeking the only prescription thats worked for me!

    • Angelika Byczkowski
      Angelika Byczkowski

      Hello John, I’m glad to meet another drug-seeker on the quest for adequate pain relief :-)

      It’s a catch-22 situation when pain is undertreated or not at all. If doctors don’t give a patient enough medication to handle their pain, the patient gets desperate and becomes “drug seeking”, which then allows the doctor to kick them out as an addict. We patients have no voice and no power in this situation, putting us at the mercy of our doctors’ personal bias and whims. They never have to justify *not* giving pain medication and leaving a patient suffering, so they can pretty much do as they please without consequences.

      But I also feel sympathy for the doctors who try to help us by prescribing the necessary opioids, because in this environment, that could cost them their license. Still, there’s a huge difference between a compassionate doctor who would like to give us opioids but is afraid to do so, and an uninformed doctor with prejudice who believes we shouldn’t have them at all. Even education wouldn’t change their moral judgements, which have no place in the doctor’s office.

    Nicole Green

    Hello Angelika – As a chronic pain patient myself I would like to thank you for writing this blog on behalf of all people being discriminated against by persons who have no right to use their opinion to cause us harm.

    Yes, we all have freedom of speech. However when that ‘freedom of speech’ is deliberately negatively affecting the quality of many people’s lives, is it still legal to promote it? I live in Australia and I am unaware of the Law in the USA regarding Freedom of Speech.

    Before I had a definite diagnosis I was often treated like a drug seeker myself. On one occasion I went by Ambulance to one of the ‘country’ hospitals 40 km from my home. Two weeks prior to this trip I was taken to a larger hospital with severe lower left abdominal pain. I had taken my daily dose of Oxycontin and my limit of 3 Oxynorm for break through pain. Each time the pain relief wore off the pain would escalate to severe 8/10 pain (10 being unconscious)

    When I had reached the limit of medication prescribed and the pain quickly escalated to 9/10 pain, I called for an Ambulance. Some may ask why I didn’t call earlier but hospital is the last place I want to be when my immune system is suppressed to the level it was.

    At the country hospital where I was taken the second time the Doctor on call was an older man who examined me fairly quickly. I didn’t ask for pain relief because I had my own. The pain was only 5/10 because I medicated myself to cope with the ride in the Ambulance.

    This time the pain was on the right side, indicating something was going on with my fallopian tubes. On anticipating needing some sort of evidence I took with me my Laptop that had photo’s of a massive hemorrhage that happened with the left side pain. The Doctor palpitated my lower abdomen and I couldn’t believe it when he wanted to know what my scars were from. They were stretch marks from having three children. Lol

    The Doctor admitted me for the night. There were plenty of beds available. In the morning he came to see me and commented that I had a good night. Yes, I did have a good night. After taking my last Oxynorm through the middle of the night the severe pain did not return.

    My problem was that I was in the middle of finding a new Doctor. The Drugs of Dependence Unit directed me to obtain new scripts from a State hospital until I had a new Authorised Doctor in place. I asked the Doctor to provide me with a new script. That’s when he turned on me and told me I needed to go to rehab. I said to him “You are treating me like a drug seeker” He had not looked at any of my evidence and he refused to call my Specialist.

    He said the record from the larger hospital said I “presented at the ER with a bruise on my abdomen” No mention of being admitted for three days for IV Antibiotics or that my kidneys shut down. Nothing about my dangerously high blood pressure or my dangerously high heart rate. The picture I had of the bruise on my abdomen went from my belly button down. I was black from hip to hip, covering my whole lower abdomen and down between my legs, then bleeding down the top part of my left leg.

    I pleaded with the Doctor to please call my Specialist however he wasn’t listening and he started getting hostile and ordered me out of the hospital at 7.00 am with no way of getting home, 40 km away.

    Sorry for the long winded story. Every bit is true and this is only one story that I have many of. When I read your blog it gave me hope that one day events like this will be a thing of the past. I cannot stop taking the Oxycontin because like you it does a wonderful job at lowering my pain to a safer level. I can not take NSAIDS or Anti Seizure Medication. At this stage Oxycontin is the best choice because I have no side effects and I have been on the same dose for a number of years.

    The pain I experience on a daily basis is not at all my fault. Only last October I was informed that my mother was given Thalidomide when she was pregnant with me. Thalidomide damaged my Thyroid and my Immune System turned on against me. I am grateful that I have arms and legs however it would of been helpful to know what caused the Auto Immune Disease in the first place. The Doctors would of known how to treat me and I wouldn’t be anywhere near this bad. End stage Hashimoto’s.

    • Angelika Byczkowski
      Angelika Byczkowski

      You’ve truly lived a horror story, Nicole! I’m struck by how tough we patients have to be when we’re in terrible pain and then also have to deal with a medical system that judges our pain as a lie to get drugs. Lying there helplessly, we are scolded and insulted instead of treated. This seems grossly unethical, and if they did it in any other situation they’d be fired.

      It would be much easier if pain were objectively measurable, but even that wouldn’t take into account that our bodies are very different in how they react to pain. It’s never simple and clear cut when dealing with the complexities of the human body, especially since it’s so intertwined with our mind and spirit as well.

  1. 351_dub
    351_dub

    Wow story of my recent life. I suffer from debilitating panic attacks & lost my Klonopin prescriber of 8+ years when she moved practices. The PA I’d been seeing for about the same duration treated me as just some junkie looking for a fix when I asked him to handle my psych meds til I find a new MH provider. He was belittling and put spiteful notes in my chart. Wouldn’t listen to a word I said, after years of loyalty and not questioning him I suddenly found myself wondering who this guy really is. Found out his umbrella “no narcotic” policy probably stems from his faith in a controversial religion (check ur providers credentials and online presence!) And set me on a new crusade to 1-find a doc who takes my form of Medicare and 2- find one willing to continue my course of treatment. This was the bane of my existance for at least 4 months.. every doc I found was guarded, suspicious, or in 1 case outright hostile when I brought the Klonopin up. Nevermind that I never deviate from my doses or abuse my meds, nevermind that we exhausted all other attempts over the years of trying unscheduled drugs including Neurontin, Vistaril, (these arent even true anxiety meds fyi), Xanax and Buspar, the Klonopin was the only thing that helped me be somewhat functional in life. After several such visits i felt very discouraged and just wanted to give up, lie down and not get out of bed, it was that bad. I used an online service to see who prescribes what and bills Medicare and found my new provider that way. He’s everything the other guy was not- compassionate, actually listens to me, sympathetic and old-school i.e. he probably cares less than the other guy would about what his colleagues and co-workers think. Scared to death he’s gona retire someday and I go thru this hell all over again. I have a legitimite medical/mental health condition and people who wanna sell their meds or OD on them are making it harder for me to get mine. Media demonization have made out a nice guy like my new provider who is just sticking his neck out to help me with the only thing thats worked into some dope-pusher which he is not, its just wrong. I feel your pain (well, not really as u addressed!) and hope something changes 4 the better and soon. Thanx 4 writing this great piece

    • Angelika Byczkowski
      Angelika Byczkowski

      I’m glad you liked my article. As you can imagine, working so hard on it wiped me out and left me hurting. I didn’t think I even had the energy to get up today, but these kind comments have sparked my enthusiasm again.

      The unkind and insulting treatment from healthcare providers really knocks us down and keeps us there if we don’t make a huge effort to see yet another doctor and try again. But at least we can be sure there are good docs out there and we just have to keep looking until we find one.

      I’m sure many of us can relate to your reaction: “just wanted to give up, lie down and not get out of bed”. Our struggle to get decent pain relief is depressing and exhausting, just what we need when we’re already so miserable.

  2. 351_dub
    351_dub

    My bad regarding the duplicate comment! Issues with creating my account lol

    Nancy

    Angelika, thanks for your story! Your advocacy is so appreciated. I too, suffer from Ehkers-danlos Syndrome and rely on opioids to control my daily, disabling pain. Unless you have lived with severe pain like this, day in and day out, you just don’t understand. Without the pain relief that opioids provide, I have no quality of life, and even became suicidal. Like you, I tried every alternative I could before coming to terms with longterm opioid therapy. It literally saved my life.

    • Angelika Byczkowski
      Angelika Byczkowski

      Yes, I too can say that opioids have saved my life too. It’s almost impossible to face the certainty that we’ll be in pain the rest of our lives if we’re not provided some protection from it.

      Too many people don’t understand the completely different nature of chronic pain versus pain that heals. Permanent pain is a concept that isn’t comprehensible until you’re living it.

    Jeffrey Fudin

    NovaPain Associates
    PO Box 214

    I’m glad I found this blog! I encourage any patients to PLEASE tell their story on my latest blog, Patients Share Humanistic Side of Living in Pain amid Lawmaker Opioid Hysteria. I’m hesitant to paste in the link because I’m afraid this will go to spam. Just Google search Jeffrey Fudin and Patients Share Humanistic Side of Living in Pain amid Lawmaker Opioid Hysteria and you’ll find it.

    Keep up your great advocacy!

    Best regards, Dr. Jeffrey Fudin

    K

    I am very frustrated. I’ve been through 4 pain clinics (two turned me away immediately) and 4 PCPs in the past 3 years.

    It took multiple trips to the emergency room for pain before I was prescribed percocet, as what was supposed to be a “temporary” emergency fix until they found another solution.

    Well I tried all the other solutions. I’ve tried medication, PT, accupuncture, massage, vitimins, health drinks. They are down to lyrica now but I don’t want to try it due to my rather violently ill reactions to topamax and galbepentin. All that is left now is other pain killers.

    I was prescribed the percocet probably 2 years ago. i’m still on the same dose because the first time I asked about upping it about a year later. My doctor cut me off and I had to make the recently filled prescription of 30 last an entire year before I could get a new one.

    My pain has gotten worse, it’s not surprising to me because I read a few things on studies the doctors apparently never read about untreated pain giving you a “new” default making it harder to treat. The percocet has been downgraded from rescue pain killer to “slightly worse than normal” pain. And it makes me non-functionally dizzy. I don’t take percocet anymore. I am still apparently a drug addict.

    I have spent 2 years trying to explain to my doctors, please, I need help. I haven’t seen my best friend in over a year and she is only a 20 minute drive away. The pain wakes me up and I have an illness that means ideally I should get more like 10-12 hours than 8 and I am getting 2-4 most nights.

    I am 24 years old. This is my life now. No one is willing to help me. Instead of being sad that my illness will probably shorten my lifespan considerably, I am sad it’s not killing me fast enough because I can’t take this pain. This is my quality of life.

    And every doctor’s visit I ask about the pain and am told “it would be an awful shame to have you on pain killers at 24 years old”. It would be awful if I was on heart medication but you have no issues prescribing that do you?

    I’m not sure what to do anymore. The final pain clinic to try in the area informed me the only thing they had for me to try was lyrica and talk therapy because I was clearly upset (I wonder why!). There is really no help if you are a pain patient nothing is making the doctors have to treat us.

    • Angelika Byczkowski
      Angelika Byczkowski

      Dear K, I’m horrified at what you’re going through and so wish I could help you in some way. Your comment about pain meds versus heart meds is spot on. It’s criminal that our medical system refuses to acknowledge the serious harm of untreated pain. I’ve found many articles attesting to this phenomenon – here are a few:

      http://edsinfo.wordpress.com/2013/11/06/watching-pain-become-chronic/
      http://edsinfo.wordpress.com/2013/11/17/warning-untreated-pain-leads-to-chronic-pain/
      http://edsinfo.wordpress.com/2014/02/15/the-realities-of-painkillers-addiction-and-chronic-conditions-2/

      …and speaking of heart disease:
      http://www.medwirenews.com/38/105240/Cardiology/Chronic_musculoskeletal_pain_increases_CVD_risk.html

      If you have a diagnosis of a painful illness, it should be possible to get pain medication regardless of age. Many previously inexplicable pains assumed to be just “in your head” have now been traced to physical causes. Even Fibromyalgia pain is now known to be the result of physical changes in the skin and brain.

      To save your sanity (and life), I believe you must persist in finding a doctor willing to help you. Please don’t give up like I almost did – the very next doc you see could be the one that’s finally willing to treat your pain.

      I know this takes a lot of extra energy you don’t have, but if you research it a little bit every day you could eventually find help. I have found pain management clinics to be the least helpful, while my PCP is the most helpful – just the opposite of what you’d expect.

      If you’re being rejected so quickly, perhaps something in your approach is inadvertently triggering addiction suspicions. I’ve found that a distressed appeal often backfires because doctors are afraid of overly emotional patients. As a kind doctor warned me long ago “Doctors are afraid of angry patients because angry patients tend to sue.” I came to realize that my emotional distress was interpreted as anger, as a demand that they “fix” me, instead of an appeal to their humanity.

      Perhaps you could ask your friend to make the calls for you? I’ve done this for my husband because it’s often easier to advocate for someone else. You can be more emotional and forceful and ask tough questions without the patient being blamed.

      The only hard and practical suggestion I can make is that you get someone to accompany you to appointments. It shows that “it’s not just you” and you can stay more calm and reasonable when you’re not all alone, a helpless patient facing the powerful expert. This person not only gives you support and backs up your claims, but is also a witness to any disrespectful or belittling behavior from the doctor and staff.

      If your friend cannot do this for you, you may be able to find a professional advocate, though I’m not sure if that’s affordable or available in your area. If you’d like me to help you look into that, you can contact me through my blog: http://edsinfo.wordpress.com/about/contact/

    MichaelL

    Sadly, I am very aware of these stories. I heard them daily when I was a practicing general surgeon/pain doctor/GP. (board certified in surgery and by the American Academy of Pain Management)

    Ironically, I fell and broke my back. Now, I am unable to get adequate pain control for my neuropathy from the post traumatic cauda equina syndrome. The pain doctor wrote, after my first visit with him, that I had exhausted all forms of therapy, (not true) and I qualified for epidurals (never proven to help spinal cord injuries) or the placement of a dorsal column stimulator. I prefer no interventional therapy since I had DVT (deep vein thrombosis) and MRSA, after the back surgery that I had to repair my broken back and a large dural tear discovered at that surgery. I feel that the opiates were stopped to try to blackmail me into getting expensive, and in my case, dangerous procedures. The doctors don’t give a damn! They are not the people in intractable pain! Sadly, i my case, it is pain that could be relieved with adequate medical care. The pain doctor, neurologist, and FP are almost useless. Now, I have to determine what part of the day that I want to suffer!

    Jennifer

    Thanks for a well thought out article. I am a chronic pain patient just at the beginning of my journey, that I am told will be lifelong. For about 18 months I have been working with a great doctor who listens to me and my needs. Despite how respected I feel from my doctor, it is hard to go in each month to get my medications, and for sure feel “looked at” by my pharmacist. Friends who I have told have had varying reactions, some so negative I have stopped telling. I’m worried about what I may have to endure in my lifetime of pain. We need more awareness, sanity, and science on this issue!

    Faryl Zaklin

    This really resonates with me.

    I have chronic pain from a couple of different problems with the added complications of having ADHD, OCD & having to rely on county-provided healthcare while uninsured. So on top of already taking schedule 2 amphetamines & benzos (when needed), I’m always worried my doctor will attribute my physical issues to something psychological.

    Something I highly suggest for anyone in the position of needing “red flag” meds on an ongoing basis is to find some sort of professional who can serve as a 3rd party advocate on your behalf.

    Having regular appointments with a social worker, therapist, psychiatrist, etc., that is comfortable “vouching” for you or even speaking on your behalf goes a long way when it comes to getting treatments. They not only can provide an objective, professional opinion, it lets the prescribing doctor know that have someone who can monitor your well-being between appointments. (It also can help address any issues of perceived non-compliance)

    The other thing I recommend is getting copies of your records on a regular basis, so you can address any incorrect information. I learned that after a doctor both noted *my* expressed concern about the potential for a med to be habit-forming as “habit-forming is a concern” and prescribed the incorrect amount, so my records reflected the balance that was filled as my most recent dosage.

    I also try to make a point to ask my doctors to note certain things explicitly in my records and explain that the purpose is to avoid any misconceptions by other doctors in the future.

    Old Texan

    I am more of the opinion that mankind should not try to play God, doctor’s included… I have been in constant pain all of my life due to EDS and aside from recycling funds through the medical and insurance system what has really happened other than to keep me on life support existing in a state of wishing for a respectable end to the crap I have to endure each day.

    Life should be for those who enjoy it, add to the miracle, and can be active participants in it… Nature arranges for a certain amount of births to be expendable as deaths for other organisms to feed off of and prolonging the inevitable does not really accomplish anything but extended lifespan of those who are slated to die anyway.

    Yes I have done some amazing things within my lifespan, but nothing that probably would not have ever existed without my participation… but given the amount of agony I have had to endure to have these feats accomplished I cannot justify the concept of “all life is precious” and seem to embrace the adage “the needs of the many outweigh the needs of the few”.

    Nature experimented with me to see if someone made the way I am would be better for evolution or worse and without medical intervention I am sure I would be dead. Maybe that is the problem, we spend far too much on each individual life that was designed to be better or fail instead of letting Mother Nature run it’s course and die off without intervention.

    That is not to say that all medical practices should be abolished, but that not every life should be worth spending millions of dollars for to keep living for just a little bit longer period of time.

    I fall in the latter category, and I think mankind has been cheated for the return in the investment.

    Indomitable

    I just wanted to say that you wrote my experiences exactly. I wish I could add more but Im still in shock of going through my experiences through your words. I wish I could do something. On the outside I look pretty normal, but on the inside its like being trapped in a ever closing in room. And instead of support, understanding, and consideration I get vilification, suspiciousness, maltreatment, and the host of other denigrating attitudes and behaviors from people. After several work related accidents I struggle to maintain some semblance of life and had to give up many of my activities as well. I wish people , especially doctors could understand what its like to live with such loss, and grief, having to measure out and ration your strength and energy, and the few meds that by the grace of God a pain patient has been bestowed with just to be able to function through the day. And Im getting older….

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