Chronic Pain Patient to CDC: “I AM NOT AN ADDICT”

Chronic Pain Patient to CDC: “I AM NOT AN ADDICT”

While fibromyalgia, medical marijuana, CRPS and migraines were all covered by the National Pain Report in the last week, it was the Centers for Disease Control that dominated the coverage and reader reaction. The CDC first re-opened its public comment period on its opioid guidelines under pressure from the pain community. Then the CDC issued another press release that talked about the dangers of opioid medication saying that opioids were involved in 28,647 deaths in 2014 and opioid overdoses have quadrupled since 2000.

Those created an intense reaction from National Pain Report readers. In particular, the CDC took much of the incoming fire.

Paul Clay, like many, called out the process that had led CDC to its controversial guidelines when he wrote, “Your committees should have at least a couple of chronic pain patients on these panels.”

On our Facebook page, the theme was familiar. Why is the CDC (and the DEA) focused on opioid abuse at the expense of the millions of pain patients who use opioids responsibly.

Juli Link wrote, “I’m not an abuser. I’m a patient. I have a right to be treated as such instead of lumped into the notion that anyone who takes an opiate is a degenerate.”

Mary Eischen went further. “CDC needs to keep their (its) nose out of my pain medicine. I don’t abuse it. I am NOT an addict. I do depend on it to take away my chronic pain. So leave us alone.”

Marty Collachi also thinks the CDC is focused on the wrong problem.

“They are so worried about Junkies dying that they are putting honest chronic pain patients through absolute hell. So much hell that they better start counting the numbers of how many suicides there will be because of the legit patients not getting the medical care they need and deserve.”

While the National Pain Report is honored to attract (and share) this reaction from the pain community, others focused on the need to make sure the government is hearing complaints, and once heard, reacts to it responsibly.

Amy Vallejo’s reaction to the CDC story was direct.

“Keep writing legislators, governor, president and everyone in between. We need more PUBLIC Facebook pages to share articles and use hashtags so people can look things up faster. It’s a lot of work but WE have a voice and WE individually and together need to let them know what the real deal is!”

Terri Lewis, PhD, who has taken the CDC and other regulatory agencies to task for not having the right data and then interpreting it the wrong way, called the CDC report “junk science”.

Dr. Lewis, who is experienced in such matters, also wrote a story that recommends HOW to make a public comment to a federal agency. It’s recommended read if you plan to leave a public comment on the CDC opioid guidelines. Her advice is being clear and not emotional. (Tips on how to comment on CDC guidelines)

Once you read Dr. Lewis’ story and you plan to comment, you can do so here.

If you do submit a comment and want to share with our readers, send a copy of it to us here,

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Authored by: Ed Coghlan

There are 11 comments for this article
  1. Susan at 12:37 pm

    I think we can agree that the “right” to pain control is mythical, at best, rhetorical. There is NO such right. Drug warriors are even now retraining their focus on the “other” low hanging fruit: pain patients. Anyone who buys that the war on drugs is winding down is naive.

    A childhood MVA resulted in fractures on multiple vertebral levels. As I aged, I experienced disc herniations as well as DDD, spondylitis, spondylosis, etc. Surgery to stabilize my spine wasn’t a success. I racked up more than a half-dozen diagnoses, which meant I could no longer work at the job I love. I spent years in college and grad school qualifying to do that job. My income is fixed at <$1,000 per month. I can no longer afford a car, and I find myself increasingly isolated. I have no living family members. When I stopped working, my support system fell away. Chronic illness eventually robs a patient of everything. I could no longer afford the dues of my professional association, my last remaining support system.

    Before I agreed to go to a pain clinic, I'd tried just about everything else. When ibuprofen ate a hole in my stomach lining, I nearly died from the hemorrhage. Fortunately, I was visiting someone in a hospital when I collapsed, or I would have died. No more anti-inflammatories for me. I've tried every option available: alternative therapies and non-opiate medications, even homeopathy. O.o

    Almost a decade ago, I was incapable of walking to the bathroom without help. Thanks to the fentanyl patch, I ambulate with a cane. I dumped the 100+ pounds I put on. (Permanently). I was given msir (immediate release morphine) for breakthrough pain, but I dropped that. After a few months, PRN methadose was added since breakthrough was still a problem.

    Last summer, during my LT provider's vacation, the pain clinic replaced her with someone younger and more conservative. I could still see her, but she's at a clinic more than an hour away and I rely on volunteer drivers, so it's not an option.

    My new provider is an activist in several anti-opiate organizations. Prior to setting eyes on me, she decided to cut my meds in half. The only choice offered was which medication I'd give up. I selected the methadose since I only used it PRN.

    I discovered that other patients being treated by this new provider all had their meds cut in half. The clinic also suddenly discontinued it's online chat/support group. (Serendipitous? Who knows!) We were all given the same reason – that our protocols were "unsafe". Since the same story is being repeated across the country, it's more likely this is reactionary. A crusade. And crusades are, by definition, capricious.

    Regulation is supposed to protect consumers by evening out the playing field. But these bad decisions aren't about protecting anyone. The maddening thing is that people in power are not stuck with the consequences. If their loved one is impacted by intractable pain, they have the resources to get around such restrictions. It's only the poor and the politically powerless that are forced to live a life without quality. Opiates can be miraculous when used appropriately.

    The providers can't really be blamed. They see pain clinic physicians being vigorously prosecuted for listening to their patients. They aren't willing to go to prison because a patient's quality of life has disappeared. Theoretically, no one dies from pain that's out of control.

    My current provider knows that breakthrough continues to impact my life. I asked her why we can't revert to the old protocol. She told me she had to "fight" to keep me on fentanyl, since it's very possible that fentanyl is going to be restricted to use by cancer patients only. (The inference: I should be grateful the fentanyl isn't unavailable YET).

    Oh, they'll do something clever like continue to market it, but insurance companies will refuse to pay for it. (Meaning it might as well be discontinued, since many patients won't be able to afford it.) On the rare occasions when I'm late changing my patch, the pain is overwhelming.

    My provider wants me to try "medical marijuana"! Just to get "qualified" costs $250 (out of pocket). I don't have that kind of cash. It costs even MORE (out of pocket) to get the "product". (None of this is covered by insurance.) I'd need to travel over the state line to obtain the "product". How am I supposed to pay for all of this? Everything I buy comes out of my food budget. Talk about irony, I'm underweight now because I can't afford to buy enough food!

    Without any ability to stop breakthrough, my pain is not controlled. It's no secret that some chronic pain sufferers are going to "street dealers" for pain relief! We live with one of the most technologically sophisticated healthcare delivery systems in the world, yet patients are being compelled to rely on street thugs rather than qualified pain management professionals. Regulation is meant to PROTECT us, not impel patients to resort to anti-social behavior. I didn't spend half of my life in school just to end up in prison.

  2. Lisa cogs at 10:07 am

    I have been a chronic pain patient since 2002. Due to an on the job accident that caused a rare sacroiliac Joint disfunction disorder. This disorder causes extreme pain due to the fact that my sacrum joint is no longer stabolized. A few years ago after having many problems with side affects as well as disappointing results my doctor and I decided to try a fentynal patch at the lowest dose in combination with Ibuprohen as well as a muscle relaxer. Fortunately it worked!
    My regimen is closely monitered by not only just my primary care doctor. But my therapist councilor as well as a pshycolgist. I am also reguired to have a routine drug test at every office visit prior to the dispention of any proscription. I think that all of these regulations are good enough. I am tired of all these aligations of drug addiction towards chronic pain patients. It is not just disrespectful, is is despicable and often times deadly for patients. I as well as others have the right to live without pain and suffering. I can only hope that I won’t be subjected to this discrimination. The government needs to stay out of my private care and allow me to have the best treatment so that I can continue to live without suffering. Thank you for the opportunity to voice my opinion.

  3. Lynda Richardson at 12:11 pm

    This is my coming out! Since only a few have known about my health problems or the medications I have taken for years. But I am tired of the treatment others like me and I receive because we are chronic pain patients. I have been a chronic intractable pain patient for over 15years and take only the medications I am prescribed by Pain Management Doctor. The discrimination against legit chronic pain patients has got to stop. Chronic pain patients that don’t abuse their medications are being discriminated against because the governments long failing war on drugs and medias insistence that all opioids are bad anyone taking them are addicts and though it is great for their ratings it is causing significant damage to legit chronic pain patients. Because the media only covers the horror stories of the addicts and twist the numbers being used to work in their favor. But never once looking to the chronic pain community to see what is really happening among chronic pain patients or their doctors. Unless it is to exploit the few abusing the system. For the record I have been treating with the same doctor on the same dose of medication successfully for the last 9 years since we relocated to Northern Ca. only because of our move I had to get a new doctor upon relocating to far from my old doctor to continue seeing them. I have never had ANY PROBLEMS EVER. I have never abused my medications in anyway committed Diversion or any other type of miss use but still so many like me that are Chronic Intractable Pain Patients are treated like lower class citizens. We are discriminated against labeled and thrown away. People are suffering in under treated or untreated pain. Because they are being left in unrelenting pain too many are choosing to commit suicide just to relieve themselves of that pain this must stop. No one should be left in the position that death is the only answer. Would you want to live if every moment of your existence your body was riddled with pain you can’t cope with? How many you of you have watched a loved one die in horrible pain because the doctors or nurses were more worried about addiction then ending the suffering of a loved one that was soon to die anyway? I have it is torture for the person dying and the loved ones having to stand by wishing the end would come just to give them relief from the pain. When all of this is preventable even for those that have the disease of addiction deserve to have their pain treated they just need more care since they have addiction problems. For those unaware chronic pain is not just a condition but is a disease that attacks The Central Nervous System and The Immune System as in my case. I also want to add that it is not only a NATURAL HUMANE RIGHT but a LEGAL HUMANE RIGHT to not only have our pain acknowledged but treated. Pain is now also supposed to be considered the Fifth Vital Sign for nurses. Just as any doctor would treat a Heart attack patient with Heart Disease or a Diabetic they are all treatable disease’s with the right medications individualized to each persons situation and health condition to control their disease or condition. Every person has a right to a quality of life to not be discriminated, to not be tortured and untreated or under-treated chronic pain is torture. No one should be left to suffer uncontrolled pain when it is treatable.

  4. Jeremy Goodwin, MS, MD at 1:23 am

    I have to say that I am disappointed in the articles presented. There is little meat and and much trepidation that comes to interviewing experts when their services are offered. Until the National Pain Report picks up the courage to interview true ‘frontlines’ information from in the trenches via practicing pain and headache specialists, it will seem like a weak mewspaper preaching to the
    choir.

  5. Dorian W at 3:26 pm

    as a sober person for 27 years, i must say that this is crazy. i just read and article about how a 10 block area on the west side of chicago is the best plase to get heroin, people line up for hours like a blk friday sale.
    to put the people that live.in chronic pain in the same category as these junkies is crazy. my brother was in a terrible accident 8 years ago, he lives in chonic pain daily
    he has to take 3 different types of medication daily. he is a very high tolerant patient. i give him his medication just to make sure he never ends up like i did. with that said, i have never felt the desire to take one of his pills and he never takes more then prescribed. The Poloticians need to leave the pain patients alone as should the DEA.
    Maybe if they actually went after all the heroin dealers and manufacturers and shut them down.
    But that so much.harder then picking on a doctor or a person that lives in aweful aweful pain
    As an sober addict I ould point out at least 5 places in each major cities where heroin is bought like a slurpee.
    Its use is up over 1000%. The young paople of the world need to be educated better. The Cdc needs to get out of this pain pill bull and tell the DEA TO DO THEIR JOB AND GET THE HEROIN OUT OF OUR SCHOOLS AND STREETS. If good peoples pain medication is taken away the line on the streets will tripple in size, a lot more deaths.I know i would do what it tales to help my brother. if his medication is not available. i will go to the streets for him. THE DRUG CARTELLS MUST LOVE YOU GUYS!

  6. Doc Anonymous at 1:57 pm

    What is so infuriating about the misguided attacks on pain patients and the few doctors that will actually treat them is this: The CDC’s committee echos an approach that has been fostered by the DEA for15 to 20 years and has gotten more aggressive in the past 10 years AND it has done absolutely NOTHING to stem the growing numbers of deaths. It is more appropriate to blame the growing number of deaths on the incompetence of the DEA and those who have jumped on the bandwagon of blaming the legitimate pain patients for the harms that are caused by and affecting a distinctly different group of patients.

    I attended some conferences at a local addiction treatment program, and I assure you that I do not see any truly severely impaired chronic pain patients. The participants in the program are virtually all younger too. I do not see ANY mention of demographics of the addiction population, be it ones who die or live, nor demographics of the recreational abusers who die vs. the demographics of the chronic pain patients. The assertions of the CDCs committee smacks of prejudice that is NOT founded on basics of good statistical analysis. It is by design or default inflicting torture on the innocent hostages of pain while perpetuating and expanding the death toll of mismanaged addicts, or unsupervised recreational abusers.

  7. Mona Twocats-Romero at 12:59 pm

    This is the comment I sent to the CDC. There were 300+ comments, but some of them were anti-opiates.

    My name is Mona, and I am a great-grandmother. I have 10 grandchildren and three children who I am very proud of. Unfortunately, I am unable to participate in many activities with them, due to my chronic pain issues. I have spinal spondylosis in three areas of my back. My cervical vertebrae are fused with titanium rods and screws. I have several fractured vertebrae in my thoracic spine due to osteoporosis and degenerative disk disease. These fractures are not “fixable” due to the lack of surrounding bone that is strong enough to support them. I also have remodeled fractures of my lower spine in the lumbar region which were not treated at the time of the fractures when I was a child. In addition to my spinal problems, I have serious deformities (since birth) in both feet that cause severe pain upon walking and for hours after walking. At the end of the day, the pain in my feet is unbearable. I also have been diagnosed with fibromyalgia for 20 years, as well as chronic pain syndrome. This is when your brain can’t shut off pain signals like it is supposed to, amplifying any minor pain into one of horrid proportions. In short, I am a typical chronic pain patient.

    I use transcutaneous electrical nerve stimulation (TENS), massage, topical creams and rubs, meditation, and other alternative treatments for my constant severe pain. I also use opiate medications as prescribed by my pain management team. My team consists of an experienced pain doctor, a psychotherapist, and a physical therapist. I was taking 40 mg methadone and 40 mg of oxycodone/tylenol per day. About 18 months to two years ago, due to some new regulations, my doctor suddenly and instantly cut my medications by almost half. I now take 30 mg methadone and 20 mg oxycodone/tylenol per day. As you may wonder, I have been in more pain, almost unbearable pain, ever since. I always take my medications as prescribed, so I wouldn’t think of taking more than my doctor has dictated, but I was much more functional on a larger dose of medication than I am now. I can no longer perform most of my activities of daily living since my medication has been reduced. The pain is just too severe for me to clean, do laundry, wash dishes, etc.. I am still able to bath myself about twice a week, but it is very difficult.

    My medication should not have been reduced to the point that I am no longer functional, but my doctor didn’t have much choice with the new regulations. I live in Southern California, where the weather is mostly amicable to pain patients, thank God, but my plan to retire and live my last days out in Colorado is now in question. Without an appropriate dose of medication, my body just may not be able to take the cold there, which magnifies all my pain whenever I am exposed to it.

    My family often has to delay their own lives and activities in order to help me with my responsibilities that I am no longer able to complete by myself since my medication was reduced. I used to be a ferocious advocate for the underprivileged and destitute, but now my only option for helping others is from my computer at home. Hopefully, these comments will let you realize that the number of actual addicts on opiates, and the number of overdoses, while large, is infinitesimal when compared to the millions of chronic pain patients in the United States. I still try to be an advocate whenever I can and in whatever manner is left to me.

    The recent public discussion on opiates, which paints all opiate users as addicts or drug-seeking, is not only not helpful, it is very harmful to patients like myself who take their medications as prescribed. These medications actually give us the opportunity to live again. We are very careful with our medications, and it not us who are overdosing on them. Making medications harder to get for legitimate pain patients is not the way to go with this discussion. What really works for addicts is treatment and education, so maybe you could focus on those two factors instead of trying to paint all opiate users as addicts.

    It is not helpful to limit individual doctors’ ability to prescribe what they know to be a therapeutic dose of medications to their patients. It is not helpful for pharmacists to refuse to dispense, or even carry opiate medications. One pharmacy even told me, “we don’t carry any opiates anymore. This was CVS, not some small mom and pop pharmacy, too. This is happening more and more throughout the nation, and it is disgraceful.

    Cutting off access to legitimate medications is not the right approach to solving the overdose problem or the use of heroin related to it. Treatment, education, and truly addressing the pain patients’ barriers to treatment, must be a MAJOR part of any changes.

    I thank you tremendously for opening the comment period. If you hadn’t done so, I would not be able to submit this important information.

  8. Scott michaels at 12:00 pm

    The CDC at this point put themselves in such a position they will never admit they were wrong. from october to november they change the amount of deaths by 12000 people. How and where do they get their info. Info that is so wrong its obscene. i believe that PROP DUG THEIR CLAWS IN SO DEEP that the best thing the CDC COULD DO IS PART WAYS WITH PROP.They have only tried to enhance their own agenda which.is to build more rehab clinics and eventually bring millions into their non profit business where all doctors and board members like Drs Ballentyne and Sullivan Most likely draw a huge salary. Insurance companies such.as Facey. Kaiser and the rest of them only have financial interests in mind. They are in business to make money. They are all drivin by money. Maybe the CDC SHOULD BRING IN ALL THE PAIN PILL MANUFACTURERS TO EQUAL THE PLAYING FIELD. I WITH THOSE PHARMA COMPANIES COULD GO ON AIR AND ADVERTISE WHAT THE CDC AND PROP ARE DOING TAKE AWAY THE MEDICINE FROM 50 MILLION AMERICANS THAT ENABLE THEM TO LIVE A QUALITY LIFE. UNFORTUNATELY THEYRE BANNED FROM THAT.
    SINCE THAT WONT HAPPEN , THE BEST WAY FOR THE CSC TO SAVE FACE WOULD BE TO SAY THAT TEY WERE MISGUIDED BY A GROUP OF PEOPLE CALLED PROP THAT FALSIFIED INFORMATION AND WILL NO LONGER BE CINSULTANTING WITH THEM.
    MY CHRISTMAS AND HANUKKA WISH IS FOR THOSE OF US THAT ARE SUCCESSFUL OPIOID PATIENTS TO CONTINUE OUR MEDICATION AS LONG AS WE NEED IT WITHOUT ANY MORE THREATS. I WISH THAT THE DRUG ADDICTS STAY AWAY FROM PAIN PILLS. IF YOUR NOT GOING TO CLEAN UP YOUR ACT, JUST USE HEROIN, ITS ALOT LESS EXPENSIVEAND EASIER TO GET. THAT WHT THE CDC SAID. PLEASE YOUR ABISIVE ACTIVITIES ARE DISRUPTING THE LIVE OF MILLIONS OF PEOPLE THAT LIVE IN CHRONIC PAIN. its common knowledge in the world of addiction that addicts sabotage and disrupt those that love them most, now they are disrupting us and the CDC is playing into it.
    EVERY HEROIN ADDICT IS A LIAR, SO WHEN THEY GET CAUGHT AND CRY, THEY MAKE EXCUSES. NOBODIES GOING TO SAY THEY WERE JUST HANGING AROUND WITH FRIENDS AND JUST TRIED IT. THEY WILL ACT INNOCENT AND BLAME OTHERS. WELL I TOOK FROM MOM OR THE DENTIST GAVE MY SOME. THAT IS ALL BULLCRUD.
    PROP ESPECIALLY KNOWS THIS BECAUSE THEY WORK WITH ADDICTS DAILY PHOENIX HOUSE HAS A 2% SUCCESS RATE I READ THE OTHER DAY. . THAT PROBABLY IS WHT THEY LIE SO MUCH, ITS BECAUSE THEYRE LIED TO ALL THE TIME. CDC MUST NBREAK ALL TIES WITH PROP!

  9. Billie Jean Vazquez at 11:58 am

    If I didn’t have my pain meds to help me keep on working I would not be working. I wake up at night with migraines and the only way to stop it I take my pain med , muscle relaxer and sit up and sleep it off. Since I no longer have good insurance because of Obama care I can no longer afford injections that help.

  10. Laura at 11:42 am

    The recent CDC report and its conclusion to deny proper medical treatment to chronic pain patients is unethical and I agree with Dr. Lewis, it is “junk science.” Without relying upon accurate and informed input from qualified Pain Specialists (M.D.’s) and pain patients, the results of the CDC data is inaccurate and very uninformed. Huge difference between addicts and patients. One chooses their personal Hell and we patients are simply trying to live the best lives we can while we’re still alive. Medicine is a very complex study and should be left to the good Doctors who know best and to we patients who prove ourselves to be good citizens every minute of our painful lives. If you don’t live with chronic pain and all that it entails, you have no idea what it takes to survive in this life. Without proper medical management I have no quality of life at all. Period.

  11. Mary at 9:56 am

    I AM NOT AN ADDICT….I have very real chronic pain, from Tarlov Cyst Disease and Arachnoiditis.