Burnout

Burnout

By Angelika Byczkowski

Angelika Byczkowski

Angelika Byczkowski

I’m starting to burn out from the relentless onslaught of anti-opioid propaganda. I started my blog about chronic pain years ago, before the anti-opioid groups had become so vociferous and aggressive. Now, those seem like “the good old days”.

Every morning I dread what I’m going to see on my Twitter feed, which is focused on pain. I follow many of the outspoken patient advocates and doctors in pain management, and my feed has become a continuous stream of bad news.

The only positive news seems to be coming from scientific research. Every few days I’ll come across some promising studies that are pertinent to this blog. But even the most effective discoveries will not be available on the market for years (up to a decade) and that won’t save us from the ongoing opioid witch hunt.

The anti-opioid folks are using a well-known psychological tactic: if you repeat a falsehood enough times, it is perceived as true and then vigorously defended. It’s been proven that believers will react to any questioning of their new views by doubling down, digging in their heels, and closing their minds.

We all become defensive when we feel attacked, but it’s even worse when a belief has no rational basis, like these:

  1. Everyone who chronically takes opioids is addicted,

  2. We can solve the heroin overdose problem by restricting the supply of opioids prescribed for pain, and

  3. A daily dose of more than 90mg morphine equivalent is extremely dangerous.

It’s sickening how the US government has taken sides against pain patients. The CDC allowed the PROP anti-opioid group to practically dictate policy by using their opinionated arguments throughout the CDC guidelines, even without much or good scientific evidence.

The PROP folks are wily. They started feeding the media their opioid addiction propaganda many years ago. It’s almost as though they were planning on this “opioid epidemic” because they are now so perfectly positioned to profit with their pricey (and mostly ineffective) recovery programs.

As more and more people are forced to stop taking opioids, PROP members are poised to reap financial benefit from their suffering. In this time of desperation for so many, they just happen to have two lucrative solutions to the problem they have created with their all-encompassing definition of addiction:

  1. For pain patients, they offer much more expensive and dangerous invasive treatments (PROP doctors are mostly interventional pain specialists).

  2. For addicts, they provide recovery facilities (the PROP president is the leader of the notorious Phoenix House recovery facilities).

The PROP folks are now trying to make money from my suffering, and that infuriates me.

This whole debate is sickening. Many healthy people have the idea that almost any pain can eventually be tolerated and that anyone taking opioids will become addicted. This simplistic black and white thinking has taken over many policy debates lately.

The anti-opioid propaganda has permeated and warped the public consciousness. When even a doctor spouts unscientific hype and tells me “opioids are bad” it breaks my heart for all of us pain patients.

And it’s this heartbreak, over and over, that makes writing about it so painful.

Though I’ve intended to stop on multiple occasions, I’m compelled to keep writing my blog because I feel I must in some way protest this huge injustice.

As little influence my insignificant little blog has, for my own sake, I have to keep going even when I don’t enjoy it. Blogging to inform others is one of the few activities that still give me a positive feeling of accomplishment.

Until she was disabled by progressive pain and fatigue from Ehlers-Danlos Syndrome and Fibromyalgia, Angelika was a high tech IT maven at Apple and Yahoo, and a competitive endurance athlete.

When her pain allows, she spends her limited energy researching and blogging about Chronic Pain, EDS, and Fibromyalgia at http://EDSinfo.wordpress.com and writes poetry to sustain her sanity.

Her essays and poems have been published in the New York Times and several healthcare blogs, including Stanford University’s Scope Blog, Kevin MD, Substance.com, and the National Pain Report.

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Authored by: Angelika Byczkowski

There are 28 comments for this article
  1. MARTHA ARNTSON at 8:13 am

    REPLY TO TIM MASON: Tim Mason
    August 5, 2016 at 9:52 am
    TIM: At my PM appointment last Wednesday ONCE AGAIN SHE ASKED ME “now, why was it you DON’T WANT THE SPINAL CORD STIMULATOR AGAIN”??? I told her specifically!
    THEN: It was, “Well if you were a new patient here for the first time, we would NOT PRESCRIBE OPIATES AS A FIRST LINE OF PAIN, we would have you do PT, Lyrica (etc), etc. I have been dealing with this now for 6 months, their total turnaround regarding pain meds. I am currently being given 2 mg. Subutex for pain and a 5 mcg Butrans patch, which are no better than 2 Excedrin Migraine tablets. I told her this AGAIN, and she wanted to know “why is it you are taking the Excedrin again”? Frustrating to say the least.
    Your posts are incredibly accurate. I may copy/paste/print to take to her but I doubt anything will change at this point, at least with my PM physicians. Martha Arntson
    Touche! Dr. Lawhern
    Also, Pain Management is more a “Business Model” than a Medical Specialty. Moreover, the alternatives to prescription medication therapy, i.e. spinal stimulators, repeated intraarticular injections, etc, are the money makers. The spinal stimulators are now said to cure everything from joint pain, erectile dysfunction to migraines. I posted a link in this tread. The stimulator business is projected to be worth 2.6 billion by 2020. I think this will be a new “exit strategy” for high dose opioid patients. “Do this or else”.

  2. Tim Mason at 9:52 am

    Touche! Dr. Lawhern
    Also, Pain Management is more a “Business Model” than a Medical Specialty. Moreover, the alternatives to prescription medication therapy, i.e. spinal stimulators, repeated intraarticular injections, etc, are the money makers. The spinal stimulators are now said to cure everything from joint pain, erectile dysfunction to migraines. I posted a link in this tread. The stimulator business is projected to be worth 2.6 billion by 2020. I think this will be a new “exit strategy” for high dose opioid patients. “Do this or else”.

  3. Richard A. Lawhern, Ph.D. at 4:29 pm

    I have tracked down some of the “research” behind the so-called CDC practice guidelines published in March 2016. And the research is an absolute CROCK! Try to hang in here with me as I explain why.

    Particularly astounding is the biased and unscientific way that the Consultants Working Group arrived at their recommendation that 90 Morphine Milligrams Equivalent Per Day (MMED) should be established as an upper bound on acceptable prescription practice. Deborah Dowell, a Senior Medical Advisor in the CDC Division of Unintentional Injury prevention, wrote a briefing of the Consultants Working Group major recommendations that includes a summary chart labeled “Relationship of prescribed opioid dose in MME and overdose risk.”

    Four published studies are compared in that chart. Apart from the unexplained protocols behind those studies, the results are internally inconsistent and wildly at variance between the four. One study of reveals a leveling off of overdose risk at 50 mg Morphine Milligram Equivalent Daily Dose, while the others claim a significant further increase in risk at 100 MME or higher. What we don’t know is HOW MUCH higher the dose increase was in each of the four studies, OR on which opioids.

    We also don’t know whether the protocols actually measured what they purport to measure, or were even mutually compatible. Finally, there is a more than four-to-one spread in outcomes between the three studies at dose levels above 100 MME. That spread of outcomes should be deeply suspicious in a document which is claimed to support a “practice guideline.”

    There are literally a whole HOST of unanswered and potentially damaging questions of methodology and interpretation wrapped up in this chart and the guidelines. Among the most fundamental questions is “what is the variability of effects versus MME in large patient populations?” Anyone who understands the least thing about opioids should know that there is a very wide range of variability in individual patient response to opioids. But that variability isn’t even mentioned in the presentation OR the guidelines. Instead, the CDC is now training thousands of doctors in a fictitious standard of risk that assumes patient responses can be meaningfully averaged — which they clearly can’t.

    Medscape has also published an excellent article titled “The Myth of Morphine Equivalent Daily Dosage” which I believe needs to be required reading for anyone who writes in this field. See http://www.medscape.com/viewarticle/863477

    A strong case can be made that the basic research used by the CDC to justify restrictive guidelines on prescription of opioids is not only scientifically weak but has been cherry-picked by a group of people who were NOT qualified in pain management, to support a totally fraudulent guideline. In short, if these people were at all qualified, then they lied. And if they weren’t qualified, then they had no business pretending that what they came up with was scientific in any way.

  4. Tim at 10:57 am

    It is true in most chronic pain cases, thereis no CURE for the pain. It is a situation that needs to be dealt with by our competent physiscains on a case by case need. One size does not fit all. In my case I have had two back surgeries the frst for a bulging disc which the ortho doctor explained to me that he would “simply” scrape awau the part of the disc infringing on the nerve. OK, don’t sound so bad and he even went on to state that about 70 percent of my pain would be relieved. This would be MUCH better than my current situation. I had the surgery and in one day and and a half I was released from the hospital with instructions to walk to keep the scar tissue from forming so bad. I did exactly that. After about 3 months I asked the doctor why I had muscle spasms in my mid back constantly and the surgery was at my lower back. He stated to keep exercising and keep your back muscular system at the most pek condition I could. After six months of following the doctors directions, I was still lying awake all night, using a hetaing pad, ice, hot showers, lying on freezing garage concrete whatever would ease the pain a few percent. After about 8 or nine months I realized the pain was not going to cease. During this time I was on a mnild/moderate opiod pain reliever. I could still work but it took ALL the will power I had. I had two children in college and I worked as a carpenter. The doctor stated to me after 9 months or so let’s do another MRI. Now the ortopedic surgeon was telling me I needed a more invasive surgery consisting of screws and plates to “bridge” the disc that was giving me so much grief. After talking and waiting and hoping and praying the pain would get better, I had to agree to the pain. My intimate life with my wife was gone, no social life, I was self emloyed so I could at least take a day off if in agoby but life was not good. The las visit before the second surgery to the ortho doctor he states” you are going to go on disability, right?” I was absolutely floored. Why was I even having another surgery if I was going to have to apply for disability? The doctor stated that if I did not go throught withthe surgery, it would cause even more problems. Problems like loss of bladder control, inability to walk, nueropathy etc. I was backed in a corner from where I started, I thought the first surgery was going to help me. Enough of my story as I am sure the same thing has happened to millions with back disorders. I understand that about one third of the country has chronic pain that needs to be treated. The stigma of going to the pharmacy and being looked at like “you are weak, you’reand addcit, you could do better if you tried. is really very hurtful. People with minor pain or even severe pain such as a broken bone can not understand people with chronic pain and even our physicians do not understand the emotional devastation and the relentless pain that the body can produce. You go to a pain management program to try to get some relief and to my dismay even the Pain management doctors seem to have no mercy. It is take what I prescribe, as I prescribe it and “be happy”. Easier said than done.I think chronic pain patients have to admit it is just overwhelming a large part of the time but know not what to do. Now it sems that those not in chronic pain know what is best for those of us who are in pain and that is decrease their (chronic pain patients) medicine, that is the answer. Then what. The patient is in more pain, more anguish and subject to more depression than they are already in and where do we turn? There is no where to turn. I have never taken heroin, I don’t smoke marijuana, I don’ but illegal drugs, I just would like to have enought legal medication to hel me function. After all I have said here and even after 23 years of chronic pain, I still have kept working. Well, you must not be in tto much pain. Quite the contrary, many times I have wanted to quit, give up, and I mean “everything” but I love my wife and children. My wife should have left me and I could not have blamed her. More understanding is what is needed. I believe in the day and age we live in there has to be an answer. Not all the people on a apin management program are in one to escape responsibility. I have owned and ran a small construction business for over 30 years. Hands on, not a paper pusher.Pain management is a life changing process. I blame not those who want to help get rid of illegal drug use and the fact that good people are throwing their lives away but it can not be done by herding all of us who need medicine to keep functioning and to just bear the pain. I am sorry for being long winded. I do not claim to have the answer. Just try to place yourself in someone elses postion without judging them. It is difficult. I do not desire to make ANYONE’S life more difficult. Thank goodness for the internet. I have more to say but have said enought for now. Once again, all those in chronic pin I am in thought and harmony with you.

  5. Kurt WG Matthies at 10:32 am

    Maybe if we all burn out, we’ll just fissle away, and stop writing impertinent columns about our benevolent medical establishment?

    What amazes me are the ranks of pain sufferers willing to tell our stories. They seem to be never ending.

    Why not invite your readers to contribute stories to your blog while you take a back seat for the month of August?

    Wishing you rest and peace this month.

  6. Chris at 10:20 am

    @Maureen — sorry to hear about your situation. It did give me a chuckle when I read abut the coloring exercise. I wanted to try yoga years ago, but nobody was comfortable working with me b/c they felt it would make my pelvic pain, CRPS, and occipital neuralgia worse. It is frustrating that most medical providers no longer listen to, but rather talk at, their patients. We’re told to collaborate with our doctor, but for many of us, this isn’t an option. It seems that the more we advocate for ourselves, the poorer care and more resistance we receive. I do appreciate sites like these/support groups that enable us to share our experiences and connect with others who truly understand our plight. Thanks for sharing and giving me a needed laugh. – Chris

  7. Maureen at 6:24 am

    @Chris, Well said, I go through the same worry each month…
    and my blood levels have been all over the place with how the doctors ‘insis’t on decreased dosages or putting me on different meds, (or else you are discharged!) then comes the suffering from side effects etc etc. It’s all sooooo extremely wrongful!

    But, what I really want to say is this… I’ve been trying out a 10 week ‘yoga therapy for chronic pain’ class. I gave it my best shot, plus it got me out of the house and around people 🙂 but…
    It tends to hurt my fragile broken body more than it helped. I did get a lot out of the breathing/relaxation exercises though.
    Yesterday was our last class and guess what we did?! COLOR! LOL!!!
    I love to color…in the old days! I can’t sit without having increased pain anymore though. And my neck with 3 compressed disks can’t look down easily anymore, without repercussions.
    But…
    there I was sitting on the floor in pain with a paper on my lap trying, trying, trying trying to COLOR! The pain kept me from focusing. I became anxious and in increased pain. I became weepy and had to stop. I was a bit past my pain med time at that point so I stopped, got up and took my med. Then came the feeling of ‘shame’ for doing so.
    I only wish that any doctor, any PT, any yoga instructor… would just take time to listen. Then maybe I could truly be ‘helped’?!

  8. LBK at 3:52 am

    I feel exactly the same way. I entered this arena about 5 months ago and what started out to be startling statistics by our government, upon my investigation, turned out to be nothing but inflated statistics thrown at our American citizens by trusted sources like CNN, news reporting obviously fed by people obviously ignoring chronic pain patients and who obviously care about nothing but advancing their own cause, and deliberate attempts to split the nation in half. One half who think all people who take medicine to ease their pain and the other half thinking anybody who takes one pill surely must be an addict. Since I have more neurologic problems than pure pain problems, I thought I was immune from the situation and fighting for others. Boy was I surprised when I had a major neurological issue come up which caused a 2 1/2 hour episode of complete non-responsiveness, did I get my first big dose of it. The police and paramedics came into my home with tunnel vision. I surely must have overdosed either deliberately in an attempt to kill myself or just an overdose – Obviously someone that woke up at 6 am, made coffee at 7 am and laid down in a recliner to go into a comatose state must have decided to take whatever it is that they take to overdose. I was mortified to see the first people in my room at the ER were the 2 police investigators who were at my house interrogating my husband. I had already regained consciousness without the help of Narcan, so why meet me at the hospital? The “tox screen” came back negative, per the ER nurse, but those tests aren’t on my medical record, so who paid for them and where did the results go? Seriously, an elderly couple in a gated retirement community in Florida are now the “usual suspects”? And at the ER at Manatee Memorial, once they determined it wasn’t an overdose, no further investigation was done. The ER doc said I passed out and to rest for one day and return to normal activities. Where in the world did our normal medical society go? Good Lord, help us all. We are going down a very dark path.

  9. Tim Mason at 12:08 am

    This is a good thread. I ordered the book “Pain-Wise” and I ordered from the publisher. I was put on a list of people to receive new books on pain management. I got an offer to buy a pain management primer and update course 100 dollar value for 50 dollars. There were several courses available on the pain management genre all aimed at the physician or NP. I opened one of the pdf files giving details of what was covered in a course. I was surprised find “Exit Strategies”. I found detailed information about how to remove a patient from your practice. Everything from down right dismissal to lowering medication with weaning protocols. Quite interesting.
    I posted on a similar thread here yesterday. “Neuromodulation Market worth $6.20 Billion by 2020. The spinal stimulator market, both low frequency and high frequency, being shoved at many people because it is so profitable. The list price for getting one of these is 80 GRAND. I wonder how much of this is profit for the practice?
    Further investigation of these medical devices revealed that the success rate combined with the satisfaction rate is less that 60 percent. That is not good. SCS is a “business model”. It is called “GEM” or Growth Engagement Model. GEM aims at proactive collaboration with clients to identify new opportunities, identify most important customers, write “Attack, avoid and defend” strategies, identify sources of incremental revenues for both the company and competitors. THIS IS NOT MEDICINE. See for yourself. http://www.marketstandmarkets.com/PressReleases/neurostimulation-devices.asp

  10. Jeremy Goidwin, MS, MD at 11:57 pm

    Exactly. I could not say that any more clearly if I tried.

  11. Krissy at 7:40 pm

    Thank you for putting your article here. I have kept with your blog at times and because I am pretty darned burned out right now too, as well as tired of and angry with what seems like an ever-growing population of self-serving individuals in the pain community. I believe rather than seeking individual recognition, we all must keep our minds open and put our talents to work for as many people as we can. Respecting each other as equals is part of who we should be. (This is not directed to you in anyway! It’s just a comment about a barrage of situations I’ve run into lately.)

    I haven’t kept up with the groups I’m in recently as my pain level has grown and soared so high I can barely handle the things I have to do each day personally. I happily get up and get moving everyday and fire away at my world, but the roadblocks create setbacks, and setbacks create discouragement.

    I can no longer go out without a wheelchair, and have found out over the past two weeks that I can’t even manage that anymore because it’s manual and difficult to handle. The lightweight electric wheelchair I need is cost-prohibitive. Since I am by myself so my days have been changing rapidly. There is so much I want to do; we all understand that too.

    I have a form of narcolepsy, and my meds wear off in the afternoon. At a higher dose, or a bid dose, I would never be able to fall asleep at night. My vision has changed, but so has my heart problems. My PM doc has referred me to see an ophthalmologist, as well as a specialized cardiologist, a doc who specializes in ME/CFS, a rheumatologist for RA and Lupus…and it goes on. I only have Medicare, so I just have to pick and choose who to see.

    After these appointments, my PM doc can increase my meds and do a radio-frequency ablation to look further into the arthritis part my back problems.

    All of this weighs on a person, and you just don’t “get” an appointment with highly-specialized docs anymore without them examining your records and choosing whether they will see you. I love my PM doc, but he isn’t helping me to get these appointments.

    So, I’m burned out on a few levels, and have to make some decisions on what route I can take to stay involved without the intensity of involvement I once had.

    Hang in your game and write your blog. I really hope you will do that — I am sending encouragement and the energy to you keep up the good work!!

  12. Bernie S at 6:50 pm

    Pain management can be very confusing. In NY I thought the rules were strict. But living in Florida is totally hard to understand. I was still in pain but I could function to a point. In FL getting pain medication nearly impossible. All of my doctors hand out a flyer, d/t ruling our office will not prescribe any pain medications. I went to doing little things to laying on my sofa. The best research shows this is generated by the CDC & f/u by the FDA. The only winners are the worker’s comp insurance companies & the many new Treatment Facilities. If we do not challenge these inaccurate statements., We have already lost. We need to educate our Family members and Friends and anyone who will listen. The CDC & FDA already run a large part of our lives. We have to be united. Please continue the Blog. Thank you

  13. Chris at 4:23 pm

    I agree with Doug tha the pain community needs to unite and vote all sitting congressmen and senators out of office. The White House petition asking for the immediate funding and implementation of the National Pain Strategy is another way, as a community, can advocate for change. I’ve shared it with friends and family members. We only have until August 12th to get 100,000 signatures. It has only 8,600 signatuteres thus far, despite it being posted continously on various medical support/advocacy groups’ websites, twitter and facebook sites. We need to band together and make our voices heard.

  14. Zyp Czyk at 3:09 pm

    I’ve been reading your comments and I’m honestly surprised at all the compliments I’m getting! I’ve responded to the first 10 individually below.

    Your encouragement helps counter all the negativity out there and reignites my little flame of protest writing and blogging. Writing has become essential to my identity now, so your praise of it has true significance to me. I’m sure you can imagine how the sense of satisfaction and accomplishment you’ve given me is making this a very, very happy day for me.

    I see that many of you seem to have excellent writing skills yourselves. I’m touched by the stories you tell, the frustration, anger, and despair you feel, because these are feelings we all share as people living with chronic pain.

    Michael L – Your horror story reminds me how lucky I am to have avoided the clutches of such immoral self-serving operators. I only ever had 3 epidural injections and one piriformis surgery (which was truly indicated) in over 30 years in my career as a pain patient.

    MELINDA Carlton – What a horrible double-whammy! First they put you in pain, and then they strip you of protection against the resulting anxiety.

    Martha Arntson – I have the same situation: my doctor is fine with my high opioid dose, but the clinic where she works first asked for pain contract and then urine tests for all their patients prescribed opioids. She’s a saint, but I don’t expect her to protest to the point of sacrificing her job for me.

    Maureen – I imagine it feels even worse to be stricken suddenly and unexpectedly than slowly descending into chronic pain over years and decades. Yeah, I try not to, but I still sometimes daydream about my old system administrator job and how much income I had to limp and hobble away from.

    Cathy M – You’re welcome and you’re right – I need to take breaks.

    Dean – I’m so sorry you were drowned in the opioid propaganda. I’m sad to hear that so many pain patients can’t take it anymore. When I think of how much they must have suffered to reach that point, their choice looks more like a reasonable decision than an emotional impulse.

    Connie – You’re right, fighting pain is an unwinnable fight. I decided to stop fighting because it was certainly hurting me far more than the pain. Now I just think of it as an obnoxious (and sometimes sadistic) neighbor, shrug my shoulders, and lay on ice 🙂

    Richard Oberg M.D. – I’m so glad you, as a doctor, have chipped in. Your anger and sense of betrayal are clear. It’s a bad sign when such an honored profession is despised by its own members.

    cindy deim – Any of the major pain organizations will have a list of federal politicians to contact with links to your state politicians as well. Or you can find name and contact info online at sites like this: http://whoismyrepresentative.com/, where you can select your state to see everyone you’ve sent to Congress.

    Thanks again for your wonderful responses.

  15. Angel at 2:56 pm

    Your article is timely for me as I’ve hit “burnout” levels on this issue as well as my physical pain level. I too have EDS as does my son. The myriad of health troubles makes my chronic fatigue so much worse. I was drastically cut down on my pain meds (in half literally in half) after the CDC guidelines came out. A month or so later in my state they shut down the only facility that provides pain care to over 25,000 patients on Medicaid. The last Medicaid pain clinic gone the provider accused of the typical “crimes”. Now I’m in fear to bring up my pain level at my next appointment due to the CDC guidelines and the fact he can pick from 25,000 potential new patients to replace me if he wanted. I fear the propaganda federal government bullying and stigma plus insurance bullying has won.

  16. cindy deim at 1:43 pm

    I completely understand. It’s overwhelming. I would love to write to more people, government, CDC… Anyone. Please let me know if there is anyone I should be writing.

  17. Richard Oberg M.D. at 1:06 pm

    Great write-up as always and so true… so true. One thing I’d like to add is that where we are (Tennessee) it’s not just high dose opioids but ANY dose including low dose regimens. And state regulations aren’t the problem – it’s physicians and forget their whining – it’d be nice if they just did their job.

    I too have a history of over two decades of bad psoriatic arthritis with tertiary complications and am appalled and disgusted with my profession. This idiotic ‘one size fits all’ medicine practiced today is the problem – medicine could squelch the CDC nonsense if they wanted to but no – they mostly agree with it because primary care physicians today would rather play the role of nurses and deal with patient’s hypertension, diabetes, or referrals to cardiologists and such rather than do what they used to do – treat patients. Keep it simple and as profitable as possible – patients be damned and sorry you’ve got a bad disease with complications – your problem. Some other non-existent person will have to deal with it.

    It just doesn’t fit the 10 minute visit model of today and they or their nurses are just too busy to look up the CSMD to be sure everything’s OK. That’s what it was designed for – right? Oh, I forgot – physicians are computer illiterate. Unbelievable.

    Once upon a time internists got up at 4-5 am to make rounds on hospital patients, then saw a day’s worth of office patients, then went back to make hospital rounds, and took call including weekends. Now it’s a 4 day 9-6 minimal to no call and no weekends and we have hospitalists cover the in-house stuff. And the occasional chronic pain patient with 20 years of records from rheumatologists or whomever at premier institutions, etc. and documented compliance with pain meds are just too much trouble to deal with. My profession.

    Now the few that will do what they’re supposed to get branded as ‘outliers’ because patients flock to them – any wonder why?? Is this rocket science??

    What an embarrassment…… what a joke. But I know – it’s tuff making 200+k/year when you’re healthy but having to deal with burnout because you really wanted to be a plumber…….

  18. Jocelyne Merwin Ellis at 12:15 pm

    I think you should continue on with your blog. I suffer intense pain also….today I saw a neurosurgeon who told me I have two bone spurs in my neck vertebra…but they couldn’t do any surgery because it would cause more pain afterward…it seemed to me he was lying…don’t know why or what for,but just had that impression…if you help one person hang on what you are doing is worth it!!! As for me I can’t take the pain or the bullying anymore!

  19. Chris at 11:08 am

    I fully relate to all that you said. It has become a very frustrating and depressing situation for all of us who suffer with chronic pain. I never would have imagined that the government would make us the scapegoat for their continued failed efforts to control the illegal opioids that are causing addiction and ravaging our country. It’s hard to hold on to hope when one realizes that any new medical interventions are at least a decade away from becoming a reality. I’m sick and tired of hearing that chronic pain patients just need to accept their pain and do more deep breathing and meditation. Or better yet, we should buy some of those new coloring books — are you kidding me. When My body is racked in pain and I’m unable to focus on anything else, the last thing I want to do is color and try to stay within those insanely small lines — talk about increasing my stress level!! It’s all so absurd, but it’s our lives. Unless you are or have suffered with unrelenting 24/7 pain, you can’t even begin to understand our daily struggle. There is never a single moment that we have relief from our suffering. I’m currently on 33% of my inital opioid dosage, as my pain facility initiated mandated taperings for all their patients a year ago. I think the uncertainty of it all has increased my stress level, as I worry every 28 days that my medications will be discontinued. I, too, appreciate your blog. It’s a comfort to realize someone else totally understands and relates to what you’re going through.

  20. Doug at 10:49 am

    We need to change the attitude in government by changing the representatives. This November we all have to vote a doctor we need to vote ALL sitting senators and congressmen out of office. Then we need to go after the PROP facilities and leadership full force. These idiots initiated all this hysteria out of capitalistic greed, not for the good of the American people. It’s time for us to stop crying about what’s happening and stand up for ourselves.

  21. connie at 10:29 am

    You have written a wonderful article! Sadly the only people who will accept what you have to say are those of us who have severe pain that goes uncontrolled without strong pain meds. I get especially upset by the people who claim to have healed themselves by one means or another. Makes me feel like I don’t try hard enough. I am happy for them but wish that they would understand that there isn’t a cure for all pain. Keep writing when you can,it gives strength to those of us who are still fighting the unwinable fight.

  22. Dean at 8:27 am

    Keep writing your blog. If only one person reads it, who also suffers with chronic, or intractable pain and it helps them in any way, then you are doing a great service to/for others.
    This is my first time reading your blog, however I am going to continue to do so.
    I, too suffer with 24/7 pain. I’m also angered with the way the opiod war is going on.
    Those behind this war have no clue what the difference in addiction and physical dependency truly is.
    I belong to a couple online support groups, for years now.
    When I say pain kills it does. Literally!!! We have lost several members, over the last couple of years, from suicide. Suicide, they felt was the only way out, of the constant, non stop, debilitating, disabling pain. So sad this is the only way they thought the pain could end.
    Now the pain, emotional pain starts for their families and all that loved them.
    I have too many different pain issues to list, but a few are RA, Multiple Sclerosis, DDD, DJD, Lupus, fibromyalgia, spinal stenosis, spondylitis, numerous knee and leg surgeries. That’s only a few.
    I suffered for years, because I refused to take narcotic pain meds. I’ve had numerous other treatments, that only hurt me worse, with the side effects. I’m now in pain management and on a pain regimen, that allows me to at least live independently.
    Yes, opioids!!
    I now wonder, why the hell did I allow myself to suffer so horribly for years, without these pain meds?? I really did my own self a disservice, as well as my children, at the time. For they were young then and the pain dictated a lot of things that I couldn’t do with them.
    Thank God I finally allowed myself the relief of the pain meds. The enjoyment it has allowed me with my grandchildren, that I would not otherwise have had has been a Godsend.
    Sorry this is so long.
    Thanks

  23. Cathy M at 8:23 am

    Thank you for continuing to write!! I feel the same way – every day is some new broadside from someone who’s not in pain, has never experienced chronic, unrelenting pain and feels qualified to preach to the rest of us! Like many other fights for justice, it’s a matter of balancing and pacing oneself and knowing this is a long haul. If you burn out too soon, you can’t help others. So take the breaks that you need and know that your advocacy is appreciated!

  24. Maureen at 7:26 am

    Dear Angelika,
    I get every single word you wrote. Please don’t ever give up writing about it.
    You are a voice in a much needed realm of conflict.
    And for me…today you helped encourage me to get through yet another day in my pain knowing that you get ME and what I endure. I get you too.
    You have an impressionable past. I am proud of you for all that you did then,
    and for all that you do now.
    I was a nurse of 34 years before I unfortunately became disabled. It was my life an my passion. It truly broke my heart to not be able to work. I became extremely lost and it has taken me years to come to a place of acceptance…although, it’s still difficult.
    I daydream all the time about my experiences as a nurse since the early 70’s which came to an abrupt end in 2004 after a traumatic auto accident that changed my life in an instant. The person who hit me has no idea how her recklessness changed my life…..
    Each day I ‘hope’ for the kind of help that I gave to others.
    This fight that we now have to endure, on top our of daily struggles with life in pain,
    is wrongful, anxiety ridden and surreal for sure. But, I’d be more lost without folks like you in it.
    Keep strong, keep confident and keep fighting the fight. You are a blessing to me.
    Maureen

  25. Martha Arntson at 7:00 am

    Angelika, THANK YOU for such a CONCISE post regarding this issue! I have read many many posts on N/P and yours stands out to me as one of the best so far. It is written in a format that I will print and take to my PM doctor appointment today!
    She is always willing and open to reading the posts I have copied from here, yours and others as well. Although, she is not in control of the new guidelines that her Superiors have set at her Pain Management Clinic this past six months.
    She, along with the other N.P.’s, have been FORCED to comply with the Manager’s of the PM Clinic or she would probably not have her job.
    She has been a great help to me, as her patient, but she also had to do what she is told in the Practice where I go. That is: Everyone will be off most opioid drugs by August, 2016 in their office.
    I see why, the Government has come down very hard on those who are seeing Pain Management Specialists due to the continuing onslaught of Anti-Opioid Propaganda as you so well stated.
    The Phoenix House has had a huge influence on our Lawmaker’s, I believe for MONEY, not so that “addicts” can receive help, FREE! Thanks again!

  26. MELINDA Carlton at 5:42 am

    I suffer from Psoriatic Arthritis and Psoriasis. It is appalling how the CDC is railroading chronic pain sufferers now. I bet if any one of them had to deal with the intense burning pain I feel daily, they would keep their mouths shut. Last month my dr. Started the lowering of my pain meds. Needless to say, I was in agony and had to stay in my recliner most of the time. She’s taken away my Xanax because of the new rules, so my anxiety from the disease is horrible. I hope in some way God shows them the real side of chronic pain. Then, maybe, they’ll be empathetic to those of us whom suffer.

  27. MichaelL at 3:39 am

    I had a pain doctor write a letter to Medicare telling them I had exhausted all type of treatment and needed a dorsal column stimulator. (I had not asked for it!) He lied. All I had done was used opiates, and Tramadol, at a low dose. Not one other form of treatment was offered by him! Maybe the $10,000, or more that he would get for its insertion, influenced his decision! By the way, the opiates had caused no problems with me! I am a disabled surgeon and pain doctor.

  28. Layla Rose at 3:28 am

    I feel you on this. I recently wrote a post about chronic pain patients on my blog and only received one comment. After reading what I wrote I was extremely shocked and surprised by the antagonistic reply. This person accused me of wanting drug addicts to get their drugs and other such absurd statements that I had not asserted in my article. They dismissed everything that I said in favor of something that they could clearly have verified if they’d followed the links I’d provided. Some of which I think point here. This person vehemently believes that all pain can be overcome w/o opioids b/c according to him/her, he/she does it every day and has a chronic illness. I didn’t make my post personal. I thought of many responses after approving the comment. My BFF thought that it was very big of me to even approve the comment, but hey, free speech, right? In any case, I may eventually post a follow-up with more pain stories, including my own which illustrate that not all people’s pain is equal or tolerated, not all individuals are able to function without very strong meds to improve their quality of life. I know long rant, but I really needed to get that out.