Opinion: Hey CDC, “I’m not who you think I am!”

Opinion: Hey CDC, “I’m not who you think I am!”

By Angelika Byczkowski

Angelika Byczkowski

Angelika Byczkowski

CDC Guideline Assumptions

As a pain patient with over 20 years of successful opioid treatment experience, I’m offended by the CDC opioid prescribing guidelines, with their assumption that I’m stupid and lazy (if my pain is even real in the first place) and that my doctor is ignorant and negligent.

I’m insulted by the derogatory appraisal of patient behavior and appalled that the CDC has broadcast such a devastatingly negative stereotype of pain patients. Coming from the government’s “Center for Disease Control”, these guidelines stigmatize patients more powerfully than articles in general publications.

In the guidelines, the folks of the CDC and their enablers from PROP portray paint pain patients as 1. lying, 2. lazy, 3. ignorant, and 4. whining scammers, assuming the very worst of human motives and behavior.

This brings to mind the psychological truth that we are generally most disturbed by others’ behavior when it reflects our own shortcomings, which leads to the inference that the rule-makers themselves are actually the lying, lazy, ignorant scammers they accuse pain patients of being:

  1. Their lying is exhibited in the deliberately flawed and prejudicially skewed statistics they used.
  1. Their laziness is evident in their refusal to work on the real problem, which is addiction.
  1. Their ignorance shows in their many flawed assumptions.
  1. The scam is that they are trying to make people desperate enough to submit to extremely profitable interventional surgeries or push them into extremely profitable addiction recovery programs.

The people who are fabricating all these new rules about opioids base them on inaccurate presumptions and stereotypes, eagerly provided by PROP and other anti-opioid zealots.

They assume I don’t exercise (and probably never have), that I’m totally out of shape, fat and lazy, that I’m completely unaware of nutrition and eat nothing but way too much junk food.

They assume I went whining to my doctor with some annoying aches and pains (which I mainly brought upon myself), upon which my doctor just whipped out a prescription pad and prescribed huge amounts of opioids, for which I keep getting refills even though I haven’t been examined in years.

They assume opioids are the first and only pain management methods my doctor and I

chose, that I didn’t already spend thousands of dollars trying multiple courses of ineffective “alternative” or “complementary” treatments (which also have no evidence for long-term effectiveness), and that I didn’t try multiple rounds of physical therapy.

They assume I never tried non-opioid medications, almost lost my sanity taking the recommended antidepressant (Cymbalta), almost fell down with dizziness from the recommended antiepileptic (Lyrica), and consumed huge bottles of ibuprofen and acetaminophen tablets – all before trying opioids.

And they insult me even further by claiming I’m so unaware that I’m “thinking myself into pain”.

The guideline writers assume I haven’t already for years applied mental techniques to reduce my pain perceptions, that I haven’t been scouring the psychological literature seeking mental pain remedies and that I haven’t tried all kinds of “visualizations” and meditation methods.

They assume I’m magnifying my negative thoughts, dwelling on my pain, and that I need Cognitive Behavior Therapy to straighten out all my “not really true” negative or fearful thoughts. They accuse me of catastrophizing.

But what if anticipating catastrophic pain and fatigue is not just a negative belief, but an appropriate life concern?

They casually dismiss concerns about the debilitating effects, internal and external, of constant pain and assume they know more about my pain than I do. In their thoughtless arrogance, they believe they know the certain path to pain relief without opioids, though this has eluded millions of people for thousands of years.

They assume I’m just a dumb, passive, and annoying pain patient, someone who doesn’t know anything about her body and doesn’t want to know, someone just complaining and waiting to be fixed by a magic pill.

They assume I haven’t suffered enough, haven’t lost enough, haven’t been desperate enough to do anything and everything in my power that had even a remote chance of easing my pain.

Opioids are the last pain treatment I tried, and the only pain treatment that works for me.

Angelika Byczkowski stitchesHere’s a photo showing a situation that would certainly be painful. I picked this instead of another picture showing handfulls of pills that only reinforce the addiction stereotype.

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. She lives in a rustic cabin in the redwood forests of the Santa Cruz Mountains just up the hill from Silicon Valley with her husband and various 4-legged kids.

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

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Angelika Byczkowski

There are 45 comments for this article
  1. Zyp Czyk at 11:25 am

    Kitt O’Malley – I’m glad to hear from the front lines that addicts aren’t that difficult to separate from true pain patients. My own pharmacist has had the same experience. He says the addicts come in groups with prescriptions that are obviously forged and then hover around waiting – while he calls the cops 🙂

    Because I’ve been getting my Rx from the same pharmacy for over 20 years, they know me well. They know I don’t always have to rush to pick up my new prescriptions ASAP because I always have a few spares. They know my pill dosage was stepped up once and that I went right back to the lower dose because I didn’t like the effects. They understand and sympathize.

  2. Zyp Czyk at 11:18 am

    Heather – I can only imagine how frustrating it must be to be a nurse and understand so much of what’s going on. It makes no sense, accomplishes little, and leaves millions of people in pain.

    Before we had our own pain, would we have understood how devastating chronic pain is? Sad to say, I probably would not have.

  3. Zyp Czyk at 11:00 am

    DocAnonymous – You are right, the anti-opioid groups truly are suffering from Factitious Disease Imposed on Another (Munchausen by proxy). Those folks definitely need treatment, if not for Factitious Disorder, then for just plain cruelty and torture. It does seem like we are a class of citizens being discriminated against, but no lawyer is willing to fight for us because we’ve been so maligned by our own government.

  4. Zyp Czyk at 10:53 am

    Susan A. – Regarding: “All you should be able to do is to get dressed and brush your teeth!” – this doctor clearly does not understand that our pain is not temporary. She is reacting as though you were waiting for healing that would then cure your pain. Being bed-bound during recovery from surgery is appropriate, but not for a lifetime!

  5. Zyp Czyk at 10:51 am

    MichaelL – I’m afraid of the spinal stimulators because I’ve read that the implanted leads can wander. Any surgery or invasive activity near the spinal cord is risky. The reviews I’ve read also suggest that most people end up letting the battery run out and then leave it off. The stimulation can be more aggravating than the pain itself.

  6. Zyp Czyk at 10:41 am

    @Kristin – being taken off opioids after they have successfully controlled your pain for years seems like medical malpractice to me. But, the CDC, with its addiction-industry-dictated guidelines has given a legal excuse for doctors to stop treating pain effectively.

  7. Zyp Czyk at 6:06 pm

    Thank you, Jean, for your praise and for recognizing the subtle, yet powerful, influence of associations in images and words. We’re so used to certain associations (like images of pills when pain is the subject) that we don’t even notice them anymore – they become cultural memes.

  8. Kitt O'Malley, MA, LMFT at 10:39 pm

    When I was an undergraduate, I worked part-time as a pharmacy assistant at a local small neighborhood pharmacy. We knew the difference between our customers who took medication as prescribed and addicts who sought medication. Their BEHAVIOR differed. The addicts shopped doctors, pretended to be doctor’s office calling in scripts, and sought more than their prescribing doctor wrote. Now, ALL patients are treated as if they are addicts seeking drugs and as if ALL patients react the same to prescribed medications, which they do NOT.

  9. Jean Price at 3:47 pm

    Angelika…thanks for NOT using a spread of medication bottles or hands full of medicine spilling over for a picture here!! You are so right…it reinforces use and misuse of too many medications! And brings up addiction to the mind of the viewer, regardless of what the article is about! We see this all the time, even syringes in the graphics!! Our words and our pictures portray us more than we’d like to think…even using the words “pills” and “drugs” when we mean the pain medication we use is a poor choice! And I for one refuse to use chronic, also. It is rarely if ever used to describe something people have no control over, but rather something of a weakness or deficient character…like chronic complainer, chronic liar, chronic malcontent, chronic pessimist, chronic whiner!! I think it was orobably used couple with pain for this reason years ago! People don’t seem to realize pain for us is not a symptom…but rather a disease process in itself! And the stigma of pain is something we shoulder from day one! The CDC and others are just capitalizing on this…and they have done an effective job, all things considered! They have changed the face of pain care and set it back into the dark ages! Thanks for your explicit article, you can see by the comments you have touched a part of each of our lives!

  10. Heather at 7:37 am

    Excellent article!! You know this is exactly what I’ve been saying for a long time, even before CDC came out with their stupid guidlines which are really discriminatory and inhumane to pain patients if you ask me. I to am a nurse who is disabled and in the middle of an appeal with disability now because I was denied. And get this, denied because of my education and training, although they saw I was unable to work and seeing a Dr regularly for all my disorders. Seriously. Because I have a degree??? Yep and all my Drs had great documentation as I requested all my records. The system is rigged, but I will fight tooth and nail. I have unfortunately been totally robbed of my life and my career. I miss every day taking care of my patients and families as well. I miss being able to pick up my 2 granddaughters who are 5 and 4, I miss being able to snuggle with my husband and doing all the things married couples should be able to do, I miss being able to cook every night, doing laundry, house work, yard work, going on vacation and having a good time and being able to actually do things, I miss being able to sleep at night, I miss being able to walk without a cane most days and having my husband push me in a wheelchair if a long distance as I can’t walk like that any more, and so many other things life has to offer all because of PAIN!!!! You see I am REAL, I am not an ADDICT, not a pill pusher, not a Dr or pharmacy hopper, nothing more than a REAL PAIN PATIENT!!! I have an autoimmune disease called Ankylosing Spondylitis, Severe Fibromyalgia, Osteoarthritis in entire facets of my spine, bilateral shoulders and clavicles, right hip, left knee, and both hands and fingers, multiple bulging disk in cervical and lumbar spine and osteophytes all over right hip and thoracic spine, kyphosis and lordosis, neuropathy, carpal tunnel, IBS, Gerd, Esophogitis, Myafacial PAIN Syndrome, Insomnia, Anxiety and Depression which who wouldn’t, and more. I have proof of all my disorders from Xrays, MRIs, CT scans, blood work, and Dr physical examination. I have done physical and occupational therapy I don’t know how many times and didn’t work, the last time I did which was the end of last year I was told my body was to fragile to be out on any machines so I could only do water therapy. And I will say it was great. It hurt but it helped, so we bought a pool and I do use it when I can get in it. I’ve seen 2 rheumatologist and tried biologics MTX which made me so weak and my Hemaglobin dropped to 8 in a month and was in horrible shape. I also stay sick a lot and they put me on prophylactic antibiotics and tried Enbrel, oh boy, I got pneumonia 2 x and went to the hospital a couple I was so sick I thought I was literally going to die as it took 4 antibiotics to clear it up after about 3 months. So that rheumatologist told me quote ‘ you are too complicated and I don’t understand why you are staying swollen and not responding to medication” and referred me to pain management because I was in sooooo much pain and was even in low dose prednisone and anti-inflammatory meds as she didn’t do pain management. So pain management helped a lot and got my pain under control and still see him and he is awesome. In 2014 I got a 2nd opinion at Mayo and they did all Xrays and exam and I boo hip cried the whole time, it was horrible. So he told me I had severe fibromyalgia along with my AS and was quote ” past the point of treatment”. Really. So now my pain Dr want me to see 3rd rheumatologist which appt is next week to rule out MCTD, Sjogrens, Reynauds, and ED. He believes I have them all but wants them diagnosed by rheumatologist. So yippee. I already have enough. And all of this is highly heredity as my grandma, mom, uncle, and. cousin have this all. I am now needing a hip replacement soon but trying to hold off if possible. My pain is getting worse as my disease is progressing fast. This my friends is what the CDC, DEA, FDA, white house, medical association doesn’t want to or care about hearing about. I have emailed them ALL…… WITH NO RESPONSES, of course. I’ve asked them their plan of action for increase in suicide that is and going to continue to increase due to people unable to get and recurve proper treatment. It is happening frequently as I have a group online and in many and should never happen. But they are being sneaky or think they are and doing blood test in deceased and any opiods, oh it’s and overdose. I’ve already told my family and they are fully aware of this nonsense as my mom retired from the medical field as well. It is sad. Now this month I went to get my meds filled which has always been 120 quanity and they tell me ins will only cover 100. So after 40 min on the phone with Aetna They with only cover 100 pills that are controlled now and your Dr has to do a preauth for the additional 20 or whatever amt is over 100. This is BS. The Dr is the Dr and I knowing ins doesn’t have a Dr ask to speak to their Dr. They said we don’t have one, I said my point exactly so who are you to determine and dictate what my Dr has written and says is best for me and you have been filling it and #1 you did not notify me of any changes which btw is the law. She said oh I’m sorry you are correct. I said I know I am and glad you said that on recorded line, also when did this policy change, never could give me an answer and she notified her supervisor, she also said we filled your meds last month for 120 for 20 days. I said hold up, no mam you didn’t I have never gotten meds for 20 days they have always been 30 day refills as it is once again against federal law to get them sooner. She said well we billed them for 20 days 120 quantity. I said really. Good I will be contacting the board as you are now fraudulently billing meds. She said no it was 20 days. Anyways get my point. You meet know what these agencies are doing. I ask questions because I’m a nurse an want to know. She didn’t kbow that but what about all these people out there who are being taken advantage of?? Everyone needs to write to CDC, DEA, FDA, White House, Medical Assoc, and your local government. WE NEED TO LET OUR VOICES BE HEARD, BE YOUR OWN ADVOCATES, STAND UP FOR YOURSELF AND ASK QUESTIONS. WE AS PAIN PATIENTS NEED TO HE HEARD. AS WE ARE NIT ADDICTS.. The CDC is basing a lot of info off of heroin overdoses, movie stars, those who buy and sell on the street and the very select few who don’t follow rules. Sorry but I had to sign a contract and have to every year and also have to do drug test every 3 months at my pain Dr and he is awesome. He does injections as well. So let’s be heard and thank you once again for your story!!!

  11. Charles Lucas at 5:30 am

    My chronic pain began with an accident in 1991. I took opioid pain killers for a very short time. About 2 weeks. From that point I resisted taking them until 2001. In that year, while sitting at my desk, my disk ruptured. It was all downhill from there. The pain was so bad that I went on the pain killers. This too was after a considerable amount of other therapies were tried. So I have been on opioids steadily since 2001 and they work then and continue to work to this day. They work so well for me in fact that I have a implanted pain pump.
    Now what I wonder is the CDC or the powers that be one day will say I cannot have the pump refilled because long term opioid pain killers are not indicated for chronic non-cancer pain? If that is the case why are they allowing these things to be implanted. The way I see it its just another method of delivery. Whether intramuscular, oral, nasal spray, intravenous or etc, it is getting into the body for what it is designed to do. Kill pain.

  12. MichaelL at 3:31 pm

    Tim Mason,

    I am educated! I learned about the troubles with the stimulators from the neurosurgeon who did a lot of the initial research on them. It was during a course to earn a Certificate in Pain Studies from the American Academy of Pain Management. I was a graduate school educated zoologist/human anatomist prior to becoming a board certified general surgeon. During his tenure, that neurosurgeon found that the electrodes were never adequate. He was voicing his opposition to their use in the mid 1990-s. My mother had one in the first decade of this century. She, eventually, let her battery run down and did not try to use it, after it NEVER WORKED! As you said, it was quite a waste of money that could have been better used for adequate treatment. The only function, of these things, is only making those who insert them large surgical fees. Considering the price they got, when a gallbladder opertion got around $1200, rubs me the wrong way, as well.

  13. Violet at 1:49 pm

    Angelika, thanks for putting a face to the reality of who we are. I especially like and agree with your take on catastrophizing.

    I would also like to say thank you to Dr. Lawhern, a tireless advocate for all of us in the truest sense of the word.

  14. Tim Mason at 1:34 pm

    Michael, Do not throw down the prayer rug in the doctors office. Educate yourself. The FDA medical device recall list for dorsal stimulators in an eye-opener.
    Number 1 problem with them is infection. (Always blamed on the patient)
    Number 2 problem does not work like the trial.
    Number 3 problem OVER STIMULATION
    Number 4 problem migration of leads. (very dangerous)
    These complaints make up no less than 80 percent of the complaints
    Only 60 percent of the stimulators are used. (Most let the battery run down and leave it off)
    That’s 40 to 80 grand down the drain.
    I am waiting on the TV ad for attorneys Gynocomystia,mesothelioma, spinal stimulators.
    If you get one you could be a rich man one day.

  15. MichaelL at 11:26 am

    Sounds good, Dr Anonymous! Thing is, can I get reparations for the destruction of twenty years, or so, of the career that was ended early? Being a chronic pain patient, now, I got screwed over on both ends of the deal!

  16. Doc Anonymous at 1:55 am

    The actions and written misbranding of the entire class of chronic pain patients by CDC, PROP and now the Surgeon General fit perfectly the characterization of a well defined psychiatric disorder listed in the DSM-V: “Factitious Disorder Imposed on Another”. In older terminology it was called “Munchausen’s Syndrome by Proxy”. In the current situation, the CDC and PROP are using a factitious disease (Addiction) and applying it to pain patients who are NOT addicts. They have gone to great lengths using lots of federal dollars to paint a misleading and harmful picture of pain patients …..As you say, Angelika, YOU are not who they say you are. That is classic for the syndrome of Factitious Disease Imposed on Another.

    In this syndrome, the treatment is complex but it often involves legal intervention to protect the victim (in this situation, the class of chronic pain patients) from the groups that are imposing the factitious disease. In this situation the Imposers are the CDC, PROP and their newest federal voice, the Surgeon General. The CDC and the Surgeon General have forsaken their duty to act on behalf of ALL the people, excluding the pain patients from the right to equal status in the health care system. And the doctors who dare to honestly perform their fiduciary duty to act on behalf of the chronic pain patient are subjected to severe sanctions by the DEA, and the state medical boards. Too many doctors are now shunning their fiduciary duty to act in the best interests of the chronic pain patient and simply equate the disease of chronic pain with “addiction”, but at the same time deny the chronic pain patient the medical and legal protections that are actually guaranteed to people who actually suffer from addiction.

    Perhaps we all should request the Attorney General to appoint an Indpendent Counsel to investigate this horrible system that imposes torture or at least the threat of torture, on the entire class of Americans. This class, the people suffering from Chronic Intractable Disabling Opioid Responsive Pain, and the doctors who have been wrongfully castigated for trying to perform their fiduciary duty to these patients, should at least get proportionately equal funding to that given to those suffering from addiction.

  17. Susan A. at 3:03 pm

    Well written, thank you for your time in writing this. I share some of the same diseases that you have, (Fibromyalgia, Chronic Fatigue Syndrome, EDS, along with Degenerative Spine Disease that has rquired 2 different Spinal Fusions over the last 2 years, L2-S1 and Iron Deficiency Anemia) and know how much time and energy it takes to do something like this.
    My PCP prescribes my Opioid Pain medications, which I am grateful for. She has me on doses so low that any activity causes horrific pain. During one of my monthly medication refill “torture sessions”, I told my PCP that I was experiencing increased pain.
    Her first question to me was an accusation, “What did you do to cause it?!”
    I had done nothing extraordinary! As many of us know, just trying to eek out some marginal bit of a life
    I told her that I had done a (one), load of laundry and went food shopping.
    Well, she read me the riot act!
    This is her direct quote to me, “Pain medication is not for doing laundry or going food shopping! All you should be able to do is to get dressed and brush your teeth! ”
    Again, that was exactly what she said to me! I was so shocked, I couldn’t respond.
    Any regular person would have immediately switch PCP’S and I would have, if I thought that I could find a Dr who would be willing to care for a Chronic Pain patient and write for my Opioid Pain medications!
    My PCP also requires that you have a Dr appt every month before she will write for your refill. I have spoken with several other Chronic Pain pts and they just call ahead and pick up their prescription without having to go through a Dr appt.
    I took a close look at her bill and I think that I know why she requires a monthly appt. She bills me/my insurance $250. for every appt!
    Not a bad payday for a 5 minute appt! $3000. a year for an hour of her time.
    So, for now she is the only Doctor willing to prescribe the pain medication that I need, to “get dressed and brush my teeth”!
    I have been a Registered Nurse for 30 years. I have won an Excellence in Nursing award and prided myself for caring for my patients and their families as if they were my own. 3 years ago I had to stop Nursing and I am now fully disabled.
    Never, after the years of Nursing care that I gave, could I have imagined a scenario where I would be treated so poorly, with such a level of prejudice and suspicion from all the different levels of the health care profession. From the receptionist at the Dr’s office, my PCP, nursing assistants, Pharmacist and Pharmacy techs and even my health insurance company.
    It is scary to think what the future may hold for me and the hundreds of thousands of people just like me.

  18. MichaelL at 10:39 am

    I did not mention in my post that I, too, became a chronic pain patient. After a fall from a deer stand, (broke my stand then my back) I developed a post traumatic cauda equina syndrome. I have severe tingling,a a result, that is poorly responsive to gabapentin. The Tramadol the “pain doctor” that I saw does not relieve the pain. I was awake until 5:00am today because it kept me from sleeping. Now, I have a severe colic-y pain in my right lumbar area that is not being stopped! It is about an 8 on the scale.

    That “pain doctor” took it on himself to write Medicare to get permission to put a dorsal column stimulator in my spine, saying I had exhausted all treatment methods. It not only was not at my request, he also lied! The only treatment he, or anyone else, had tried was the pain medications, that were working well, before he cut me back from hydrocodone 10mg. I practice biofeedback. It is good for spastic muscles. But, it is not very effective for the neuropathic pain.

    Thank you for your continuing advocacy!

  19. Zyp Czyk at 9:37 pm

    Thank you all for your lovely compliments!

    I’ll reply to the first (17) comments I received:

    Connie – you’re making me consider actually mailing a copy to the CDC. All I need are mailing addresses (paper leaves a bigger impression than email) of some officials involved in this. Any ideas?

    MichaelL – Most decisions being made these days, not by folks from the trenches of pain management, but by people who believe that cutting back on Rx opioids will cut back on opioid (including heroin) overdoses. Data is already showing that this isn’t true.

    Doug – I’ve also wondered by the AMA doesn’t sue the DEA and CDC of practicing medicine without a license. It looks like everyone just “rolls over and piddles” when facing the DEA.

    Tim – I think many of us are just too sick, tired, and in pain to do much more than manage our own wrecked lives. PROP is picking on people who can’t defend themselves

    Angel – I’m glad I was able to capture what so many of us feel.

    Mark Ibsen – your praise gives me confidence to send this manifest to at the CDC.

    Mpyatt – It’s amazing how much better life can be when pain is controlled and it’s outrageous that our doctors are being pushed to take our away our pain relief. We are so different from drug abusers, it’s still hard for me to comprehend how we all ended up in diagnosed as and treated like addicts.

    Tracie – Even I myself could not have imagined how the constant pain would wear me down. I didn’t understand the idea of being “disabled” until it happened to me. I wish more of the anti-opioid folks would have such an “enlightening” experience with pain.

    Maureen – It sounds like you have a crummy doctor and have been abandoned by your family. I also feel relief when I get a medication refill,it never lasts long before I start worrying whether it will be the last.Until I found the pain community, I had been disbelieved so long that I wasn’t sure I believed myself anymore. Finding my tribe was a turning point in my life.

    Julia – It must be awful to do everything in your power to help your daughter and always find out it’s not quite enough. Even with opioids, we can only make our pain less powerful, and when that possibility is also taken away we are left to suffer.

    Richard – you’re an inspiration and I hope others will be encouraged to write the CDC as well.

    JoDawn – I’m touched that you recognize how much effort my writing takes, thank you.

    Robert – I too have relied on opioid pain management for decades and dread the coming rules.

    Gina – The guidelines are a blatant financial manipulation to steer patients toward more expensive surgeries or repeating sessions of other therapies like acupuncture and psychotherapy. They should be offering treatment for drug addicts and leave pain patients alone.

    Cathy – excellent point: the guidelines do not differentiate a “low back ache” from the agony brought on by serious medical conditions. They assume both can be treated in the same manner with the same techniques.

    Cindy – I’ll definitely look into those.

    Michelle – It sucks to be dependent on opioids for our quality of life, or even to make life tolerable. Then to have doctors capriciously deny us medication is truly a kind of punishment.

  20. Tim Mason at 9:28 pm

    https://www.manchin.senate.gov/public/index.cfm/home

    The link above takes you directly to Senator Joe Manchin’s web page. There is a large box on the first page that load up that says “Send me your views on the opioid crisis.
    He may be a good guy but is definitely one of the Washington “fat cats” that is involved with the problem we are having. Also, send you letter to John Barrasso, R- Wyoming and Richard Blumethal , D-CT
    Also report your unethical treatment to your state department of health.
    These guys NEED our letters.
    “No man is alive that does not take responsibility for his future”
    These are just a few of the nerves I have identified
    If we wait around for someone else to stand up for us we will never be heard.

    “No woman is alive that does not take responsibility for her future”

  21. Kristin at 9:05 pm

    Angelika, I too would like to share your letter with my state legislators. I live in Maine and we have one of the strictest laws in the country.
    I have been a chronic pain patient for 15+ years. The first 5 were surgeries, injections ( which worsened my pain also and I had an extremely bad reaction to the steroid), multiple meds until finally I was put on morphine and oxycodone. My pain wasn’t gone, but at least I had some quality of life for the next 10 years. I raised 3 active boys and I am active. Last fall that all changed when my pcp retired. Nobody wanted me as a patient once they hear chronic pain. I was abandoned and referred back to the pain clinic which was a 2 month wait. My life came to a stand still. I was in agony. Going to the grocery store was torture. The dr at the pain clinic, who put me on this dose in 2006 decided I’d feel better if I came off completely. The only way he would fill my meds was to agree and to take some mindfulness classes. I had no choice. The classes were ok, but like you I have my own way of dealing with it. I also think they were geared more for the person who hadn’t really dealt with the fact that it is what it is and stopped living life. my kids were 1,3 and 8 when I had my first surgery. I had no choice but to deal with it and the opiates gave me the opportunity to go to all their sporting events etc. even coach their baseball teams!
    In 2006 the dr said in ten years you will need to double the dose. Well actually in August 2015 I cut my morphine use in half. On my own. I felt I didn’t need a whole pill so I started taking half. So not only do I not need an increase. I’ve decreased it. But I feel like I get no credit for doing so. My records are all clean. Urine tests, pill counts etc. I’ve never asked for them early. I’ve also always had a drug contract. This is another thing that nobody is addressing. There supposedly was a system in place that if you filled a prescription from more than one dr it would send up a big red flag. Obviously the system was never monitored. I think a lot of this “epidemic” could have been avoided had someone just monitored that.
    Which brings me to today. I am being tapered in 20 weeks to nothing. Not even the 100 mme! And I can’t get a straight answer or nobody knows from my pcp or my pain dr. I feel people like us should be grandfathered in. At first he told me yes. He also said I could argue palliative care since surgery is not an option. Now he says no to both. Ironically it was my pharmacist who asked me what are you suppose to do about your pain? I said I don’t know. She told me she’d look into it and found out that I do not need to be put under 100 mme it’s actually 300 since I am a long term patient. That is only until July of 2017. They’re supposed to know the exceptions by that date. I told her she was the only one who had given me a straight answer or made an effort to find out. She said nobody really seems to know. She had to research it. I thanked her and said I felt like she was the only one who was trying to help me and actually got me some answers. She said well I did take an oath to do so. I replied yes, but I thought the doctors all took one too. My only hope is to write to legislators she said and hopefully they will consider long term chronic pain patients grandfathered. It’s all very scary and stressful. Right now my future looks very grim. I don’t want to be sitting on the couch in agony. I want to get out and live!!!
    I feel like I don’t matter anymore and that the guy who robs the pharmacy has more rights than me because he has a disease.

  22. Loura Shares A Story at 7:33 pm

    Powerfully written and precisely accurate. Thank you for taking the time to put the sad experiences of so many others into words.

  23. Tim Mason at 7:16 pm

    Julia, I live in North Georgia. Odds are we see the same Pain management people. There is only 1 board certified pain management doctor for every 100,000 patients. My pain is barely managed and I.have done all that has been asked of me. Including PT, injections, etc. I saw my neurosurgeon this week and he said: “No more injections for you:”
    With that being said they ask every visit about the Spinal Stimulator. I told him there was simply not enough information in those CD’s and guides to make an informed consent. I did my research and found out from the FDA that the # 1 problem with these devices is INFECTION. #2 Implanted device does not work like the trial. This is true of the Low frequency and the High Frequency.
    I presented this data to the PA and he became so furious that he threw down his pen, stormed out of the exam room, slamming the door on his way out. I sat there for what seemed like an eternity. He returned with my prescriptions and stated that I would see the Doctor on my next visit.
    I have reported the PA to the Tennessee Department of health for unprofessional behavior.
    I think that these places give their PA’s a free trip to Disney world for every two victims they can get to bite the hook.

  24. Bernie Stevens at 7:03 pm

    Angelika Byczkowski it was like looking in the mirror with your words. I never thought I would be treated in such an unprofessional manner. In NY I worked with those who had multiple disabilities. I did the whole spectrum, simple bathing to the ordering and dispensing of their medications. And at least I can say I did this with dignity. Something the CDC has denied me. In NY I took Hydrocodone with ‘Tylenol’ 10mgs every 6 hours up to MDD 8. My over-all health is fair at best. But after moving to FL, it took 7 months to get me back on pain medication. My back is a mess with plenty of X-rays, MRI, CT Scans, Pet Scans, a Dexa Scans to show severe damage. Now I pay $300. a month for Butrans & $40.00 a month to piss in a cup. With CKD it is frustrating. Thank You for saying what needs to be heard. Where is the media coverage for us?

  25. I.Hollis at 6:29 pm

    Angelika, This is spot on! Thank you!! You speak for the millions, …who are invisible to these idiots. No one asks to be in pain. If we can treat it we should. The wheel, fire, pain relief. Great advancements of humanity. Please don’t take them away!
    Thank you !

  26. Tim Mason at 2:38 pm

    I am asking permission to submit you letter to the Governor of Tennessee and the Governor of Georgia.
    I always watch my credits. You will be identified as the author in correspondence.
    Please advise.
    Tim Mason

  27. Robin at 12:20 pm

    Perfectly expressed. Thank you for taking the time to write this.

  28. Michelle at 10:50 am

    Your article fit the pattern of my pain….after four lower back surgeries(two lumbar lamps,fusion and rods and screws)the last eased my leg pain for about six months, but left more pain in my back lumbar region. Now I also have neck pain( diagnosed first as herniated discs now as bone spurs). When I was on opiates I could at least function. Now it’s everything overwhelms me! Just yesterday my Doctor asked me if I wanted morphine, when I said yes I can’t take it anymore…she backed off and said to come back next month…WTH…I don’t really wish my pain on anyone,but just to let them feel it and deal with it for a short period of time!

  29. cindy deim at 10:40 am

    Angelika,
    Thanks so much for you post. I’m trying to get Terry Gross or Rachael Maddow to do a story on chronic pain. I would love for you to send them this letter. Also, Michele Obama, she seems like she is someone who could get something done.
    Thanks for sharing. here are the address
    http://www.msnbc.com/rachel-maddow-show/send-it-rachel
    https://www.whitehouse.gov/administration/president-obamahttp://www.npr.org/programs/fresh-air/
    You said it all my Dear.

  30. Cathy M at 9:38 am

    Thanks for this! I totally agree – the stereotype is hateful and lazy (they admit their “evidence” is low-quality, then ignore that statement as they make guidelines.) This is similar to the increased push for CBT for insomnia – assuming that all insomniacs can’t sleep because of “bad thoughts” – mulefritters!!! Some of us are lifelong insomniacs, and have tried everything under the sun, and medication is the only thing that works. And with my small dose of opioids fr pain, I also use every alternative treatment I can afford, and, as you say, do my own mental homework to try and minimize any situation that could increase pain. But they ASSUME that the pain is fanciful – they never, never bring up the possibility (probability!) that pain persists because the problem persists and medicine has yet to find that cure. I had a botched hip operation that caused damage to several tendons, nerves, etc, not to mention the d*mn metal joint is still loose (by their own tests!) but somehow my pain is self-created because hips are supposed to be healed in a month or so?? I’m constantly angered by the assumptions in many articles and blog posts, and push back whenever I can. Thanks for being on the team – we won’t lie down and take this passively!!!

  31. Gina Tazioli at 9:08 am

    I truly believe that the CDC, went from one bad decision to a worse one. Your story enlightens one of so many. Pain specialists have become a meat market in Oregon and you only feel slaughtered after you leave. I hope with more stories like yours (I had written a similar situation to CDC) they will protect the patient and go after the persons who are using these drugs illegally. They are the ones to be punished.

  32. Robert G Poe at 8:58 am

    Loved this article! It’s so true. The powers to be haven’t a clue how many lives they’re ruining. I am 63 and hoped and thought that I was going to have an extended life span, because of “OPIOID PAIN MANAGEMENT “. Now, I don’t know?? I know there are millions of pain patients whose lives are being shortened, ruined, and drained of hope. We all must do something to show the travesty of injustice, torture, and just plain lack of respect that the CDC and the POWEŔS TO BE have placed on the human beings who suffer with the “CHRONIC PAIN DISEASE “!

  33. JoDawn at 8:54 am

    Excellent points! Thank you for putting the energy into this article!

    God bless,
    Jo

  34. Richard A. Lawhern, Ph.D. at 8:27 am

    Nicely phrased, Angelica. I can only agree with your insights.

    The Surgeon General of the US is busily engaged in compounding the asinine foolishness and malfeasance of the CDC. He has recently released a letter to all doctors in the US, further promoting the fictitious “epidemic” of prescription opioid deaths. In response to that letter, I have posted the following comment on his website. I encourage others to join in confronting the attitudes which he represents:

    =====================

    Dr. Murthy, I write to protest your uninformed advocacy for the persecution and abuse of millions of chronic pain patients.

    The CDC “voluntary guidelines” on prescription of opioids in adult non-cancer chronic pain are in truth neither voluntary nor guidelines. Based on these restrictive standards, multiple US States are enacting laws which limit the availability of opioids to people for whom they provide the only reliable quality of life. Due to widespread arbitrary persecution by the DEA, pain management physicians are being driving out of practice. Thousands of patients have already been deserted without opioid withdrawal management. Deaths have occurred and more will occur. There is ample evidence that the kind of foolishness you advocate above is raising suicide rates among people who have lost any hope of managing their pain.

    The guidelines themselves reflect multiple financial and professional conflicts of interest. The consultants’ working group revealed a biased predisposition toward the interests of addiction specialists and interventional surgeons, having stacked the deck by excluding anyone who was Board Certified in pain management medicine, or actively treating patients in that specialty.

    The standards themselves reflect an egregious lack of scholarship or training in research. Claims are made that evidence for the long term efficacy of opioids is lacking, where the truth is that no studies have even been conducted. The so-called “research” which was used to justify a hard limit of 90 MMED on opioid prescriptions is a travesty of internal contradictions and confounding factors.

    The truth could not be further from the position you have taken in your letter to physicians. Hundreds of thousands of patients have been maintained on high stable doses of opioids for years without evidence of substance abuse disorder. Physical dependence is of course not the same medical entity. But even when patients become dependent on opioids for pain relief, the great majority do not display a “high” in response to these drugs, and do not spiral into drug-seeking behaviors. Tolerance can become an issue for a minority, but even that is manageable with proper medical oversight.

    Reality in this country is that deaths due to heroin and street drugs have indeed been rising. Diversion of prescription drugs to adolescents for whom they were not originally prescribed is also an issue. But the so-called “epidemic” of deaths due to prescription opioids is absolute stuff and nonsense. It is hype. Compared to an estimated 440,000 deaths per year by medical error and the 100 Million chronic pain patients in the US, there have been fewer than 16,000 deaths in which prescription opioids are one of several factors in the most recent stats.

    Drug addiction is a serious social issue in the US. It is a tragedy for affected families. But prescription opioids didn’t cause it, and persecution of chronic pain patients won’t solve it. The most reliable predictors for drug addiction are unemployment, a history of family trauma, and status as an adolescent or young adult. You are literally trying to “solve” a non-existent problem by ineffective means, while the heroin epidemic proceeds unabated.

    It is time to STOP THE WAR AGAINST CHRONIC PAIN PATIENTS. Withdraw your letter to physicians and recall the CDC practice guidelines for rewriting. At the present state of science, opioid medications are indispensable in the management of chronic pain. To arbitrarily restrict these medications on the basis of bad or no science and an absence of medical evidence is a fundamental violation of your first duty as a physician: first do no harm!

    https://www.facebook.com/USSurgeonGeneral/?fref=ts

  35. Julia Shore at 8:26 am

    I have watched my 28 year old daughter go through the same thing. At 19 she had two herniated disks and underwent an anterior posterior double fusion. She has been in chronic pain for about 10 years now. She has tried antidepressants, injections, NSAIDs, etc. She even tried a spinal cord stimulator which did not work for her. We moved from the north to Georgia and we have to drive 45 minutes to find a pain clinic to prescribe opioids though their main objective seems to be pushing procedures to make money. It is a really sad state of affairs for pain patients. The warmer climate has helped her a little. That’s why we came here. Last winter she had gallbladder disease which intensified her pain and the Drs in the emergency room would not give her pain meds. In her eyes she was a junkie. It took a physiatrist to find her her problem on a spinal MRI. When she had her gallbladder removed there was no problem getting painkillers. Now she just goes every moth obediently to get what she needs to function. It is just so frustrating.

  36. Maureen at 8:22 am

    Angelika,
    Bravo!!! Another well written piece of yours.
    Having read the guidelines…. I feel your anger, your pain, your disgust, your life, your struggle, your words, your every day… I wear your shoes.
    I have to say…as I sit here in very hot/humid Florida and having lived in Ca. for many years I am jealous of where you live. Its sounds so serene. I need serene. My spirit needs the woods. And better yet…The beautiful Redwoods.
    I too suffered greatly when I was put on Cymbalta and Lyrica. Awful memories.
    I too am angry at the CDC and their attitude, guidelines, their choosing to be ignorant, their games at our expense, and their control of our lives.
    I hold my breath each month when I go to my Pain Management doctor wondering what ‘will happen to me this time?’. ‘What will change this time?’ ‘Will I end up crying all the way home again this time?’ And when nothing does change…and although thankful… I immediately and already find myself worrying about my next visit!
    It’s a horrible and fearful way to have to live, in pain.
    I am very strong emotionally but I am currently very weak. I’m feeling defeated the past few days.
    I’m tired of my pain and having no support.
    I’m tired of my doctor (whom I saw this week) never asking a single question about my pain, about my worsening condition, showing no interest whatsoever, giving no obvious support or care….
    I’m tired of my family never checking in on me, helping me, acknowledging my pain causing condition…
    But, I will rally and somehow focus on my blessings and get through this day. Somehow.
    I support you and all others 100% who are being effected by our government.
    I am very thankful that you are all out there to understand me, understand each other.
    For, you are the only ones in my life who ultimately do.
    I’m so glad I found NPR this year. Thank you Ed for being there for us.
    Keep strong and fight the fight.
    May God bless us all today with many reasons to smile in the midst of our difficulties. Maureen

  37. Tracie Davidson at 7:32 am

    Great story. All that you stated was right on point. Nobody knows til they live inside of a body that has pain constantly from a disease we never asked for. Thank you for your story.

  38. mpyatt at 7:01 am

    I too suffer from fibromyalgia and have for 30 years, before they even called it that. I started on Motrin before it was released for OTC medication. I was given prescription Naproxen, at maximum daily dose of 1,000 mg a day which I took for years. My doctor would check my blood work to make sure there were no problems. But what that did not show was the damage being done in my esopgagus and stomach. I have subsequently had to have it stretched 3 time in last year and a half and was told to stop taking it. In the meantime, I was also put on hydrocodone. My doctor gave me a doseage allowance that none of my recent doctors would consider. When pain was still not managed, doctor put me on Fentanyl 50mg – 48 hours. That was the first time in 24 years that I did not wake up in pain and muscle aches all over the body. Between these two I am better able to function and do things that I need to do. However, I knew nothing about this drug and have come to realize after some research this is high level medication. I am not happy that I have to take it but I am concerned to try and go off it. I would never do it without doctor supervision but I am curious to see how bad I would feel if I only took the 10-325 hydro a day. I already have to take 2 pills to notice relief. I too tried Cymbalta and did not like that way it made me feel. I wish there was another route to go because I feel guilty and like a druggie for taking this level medication. My PCP was prescribing for me bug now wants me to be treated through PM. I did several years ago between finding new PCP when my freely-give medication doctor retired. I hated that I had to take a urine test every month that was $800/month. Insurance did finally cover it. I do understand why they do this as they monitor addicts as well. Although I do not abuse my medications and take as prescribed, and some days not all the hydro allowed, I still feel bad about myself when I sit there with the drug addicts waiting to get another month’s prescription. I would love to have an alternative. I agree many people are reluctant to believe how much pain we are in and how debilitating it is. Constant pain does cause discouragement and even depression. And the hydro helps both the body pain and my mental outlook. I guess therein lies the issue. Hydro does not treat the cause or source of the pain. It just makes you not feel it as much. Because I have dealt with this all these years, I totally get it when I see people suffering with it and just dropping out of the normal things in life. Yes, I hate taking controversial drugs but I cannot imagine what my life would have been these last 25 years without this help.

  39. Mark Ibsen MD at 6:24 am

    Well said Angelika.

    May this manifesto spread far and wide.

  40. Angel at 6:13 am

    Your article is spot on! Thank you! It feels like you wrote all of my frustrations into one tidy articulate article.

  41. Tim Mason at 6:08 am

    Angelika, You certainly did not waste any words in this accurate description of the sad state of affairs surrounding the prejudiced thinking found in regulatory agencies and all other medical “professionals”.
    I cannot help but think this mindset is the result of ill educated MD, NPs and physician’s assistants.
    PAIN MEDICINE EXPERT & EDUCATION GAP:

    US medical school students only receive 10 hours of pain management education and of 104 medical schools, only 4% require a pain course. [Breuer B et al. J Pain 2007], IOM. Relieving Pain in America. 2011
    Canadian veterinary schools devote 5X more hours (87) to pain management than Canadian medical schools (16) [Mezie L et al. J Pain 2011]
    “For patients with chronic pain, especially those with syndromes that don’t fit into neat clinical boxes, being judged by doctors to se if they “merit” medication is humiliating and dispiriting. This type of judgment, with its moral overtones and suspicions, is at odds with the doctor-patient relationship we work to develop.” [Danielle Ofri, MD, Faculty NYU and Bellevue Hospital Aug 13, 2015
    Everyone is left with a “What to do” mindset.
    We are not mute, we are not blind. Report your mistreatment by your healthcare professional to your state health agency. Until these investigators go to work, spend their resources doing what they are paid to do.
    Contacting these entities is somewhat like calling 911 on your health. Eventually, we will get their full attention. Let’s make it “newsworthy”

  42. Doug at 4:14 am

    Once again Angelika, wonderful letter.
    The thing that really eludes me is, why haven’t legal actions been taken against the CDC and PROP for these single sided guidelines that only had the input from these 2 groups?
    We all know that not a single Pain specialist, neurologist or rumitoligist were allowed to consult in the conception of these inhumane guidelines which only states that this agency obviously believes that chronic pain is a myth.
    We all know that the so called science they are basing their reasons for stricter restrictions on prescribing opiates is mostly fabricated by CDC psychologists.
    We also know from that addicts lie. They say that they became addicted to hermon because they once we’re prescribed opiates when they got a tooth pulled or had minor surgery. Well, prior to my first accident I had to have several minor procedures done and was prescribed opiates for pain for a short period of time. I once endoed my Quadracer 4 wheeler almost 200 yards and broke my arm in 2 places and was prescribed viciden as needed for 30 days. I took 3 pills in 30 days and that was it.
    I had my knee taken out in football hyper extending it and tearing my ACL. My knee was scoped and I was prescribed opiates for pain again. This time I took about 10 pills because I was pushing my knee during PT so I could get back on the field.
    A few years later I fell 18 feet landing on a garbage dumpster and fractured 5 vertebrae in my lower back and again short term opiates that I took as little as possible. It wasn’t until 22 years later when my previous injuries started to produce chronic pain effects that I started using opiates to treat my chronic pain, and the fact of the matter is, I agreed to epidural injections and stimulator implants totally avoid long term use of opiates. The problem is, these procedures caused me a hell of a lot more pain then I had before them and totally disabled me in the process. So, I’ve had teeth pulled, knee surgery, broken bones and torn legimints and NEVER became addicted to opiates on a single one of these cases. So how can a person get a tooth pulled, then be prescribed 10 pain pills become addicted to opiates that fast?
    Now I’ll tell you how. Because they were already addicted to something else prior to being prescribed these medications.
    Finally, we all know that they are totally ignoring actual scientific research from highly respected Universities like the University of Michigan, UC San Francisco and a host of others. Why is it so hard to even get our government representatives to listen to facts instead of fiction?
    I do know that the Washington Legal Foundation was working on an investigation regarding the illegal & discriminatory way that the CDC guidelines were conceived, but I haven’t heard if it is going anywhere yet.
    Anyway, loved your letter and I hope you get some sort of response from the CDC over it.

  43. MichaelL at 3:40 am

    Those same “experts” could tell I was “feeding my patients opiates”, not considering all alternative therapies, including not sending patients for surgical consultations, medical consultations, etc., etc., etc. They did this without ever setting eyes (or hands) on the patients involved. They did not even talk to one of them when they decided I was not treating them correctly. How many doctors were ran out of the profession using the same practices that we were accused of…treating patients without seeing them! Sadly, the fact that I had taken the time to have more years in education than MD, PhD-s was detrimental when trying to talk with doctors who had trouble understanding, even, the basic science that second nature in my understanding. Sadly it is the patients that will be abandoned and sent to the street to die from the use of street morphine, spiked with black market Fentanyl. But these decision makers have a false sense of “caring”. They make their punitive decisions in a pool of ignorance!

  44. connie at 3:11 am

    Your post needs to be put directly into the hands of the heads of the CDC the FDA and the president! You stated very well what so many of us feel. Thank you!