Over 600 Comments to CDC Received Thus Far

Over 600 Comments to CDC Received Thus Far

As of Christmas Eve morning, The CDC has received over 600 comments in 10 days to its controversial draft CDC Guideline for Prescribing Opioids for Chronic Pain. That number is expected to grow before the January 13th deadline for submitting comments.

If you are going to write a comment (and it’s good to get involved), how do you make your comment really matters? Dr. Terri Lewis, who is an expert in public health policy, wrote this for the National Pain Report suggesting the ways to make your comment effective. If you are going to comment, we recommend your read Dr. Lewis’ thoughts first.

Michael Fogarty lives in Wildwood, Florida, is a chronic pain patient who works as a Network Systems Administrator. He shared with the National Pain Report his comment to the CDC which was short, sweet and to the point.

“I am 63 years old, a married father of two. I live in Central Florida and manage the computer network for an Engineering company. I suffer from chronic lower back pain, and after unsuccessfully trying all the usual non-pharmaceutical treatments and epidural injections, I was put on high dose Opioid therapy. This was very successful and I was able to return to work and resume my career. I was able again to be a father to my children and a husband to my wife.

After about eight years of very good life my Opiate medications were reduced to be more in line with current “guidelines”. While I am still able to work my quality of life is severely reduced. I spend a portion of each day as a cripple. Two of my neighbors committed suicide because current guidelines did not permit them adequate pain relief. Every day I pass by their house and wonder when it will be my turn.

Specific dosage recommendations in your Proposed Guidelines will result in many more cases like my own and my neighbors. Dosage guidelines will be held as Gospel by Physicians and Pharmacists, who will fear Regulatory persecution if they deviate from them. Thank you for allowing comments by those affected by chronic pain.”

As always, if you submit a comment, send us a copy of your comments and we’ll consider republishing it between now and the January 13th deadline. Contact us by email: editor@nationalpainreport.com

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Authored by: Ed Coghlan

There are 16 comments for this article
  1. Dale at 9:18 pm

    Gabapentin withdrawal has ruined my life and made me want to die. They hand it out like candy with nothing ever said. My insurance quit covering it suddenly I didn’nt have the $$$$ Noe I have been in the hospital twice missed 3 weekend of work in 3 months I have zero hope of overcoming it. I kicked alcohol 3 years I kicked heroin 2 years and off nicotine almost 2 years DO NOT TAKE THIS MEDICATION!!!!! There are less painful ways to commit suicide.

  2. Dan Melton at 11:41 am

    they say that you are not to wish bad health on anyone BUT I WISH I COULD GIVE THE PEOPLE THAT WANT TO SEE US SUFFER MY PAIN FOR 24 HOURS that they could not take away for 24 hours and have pain meds locked up in front of them then they might understand what we (people with real health problems) are going through

  3. Susah Beth at 7:32 am

    I’ve been fighting Central Sensitivity most of my life. As well as, Complex Regional Pain Syndrome for the past 16 years. CRPS rates 46 out of 50 on the McGill Pain Index. It’s the most painful disease known to medical science.
    However, competent medical practitioners understand the long-term use of narcotics isn’t beneficial for non-malignant chronic pain. Aside from acute pain, opioids have a Band-Aid effect on the brain masking symptoms. As a consequence, the threat doesn’t always materialize until it’s too late. In reality, narcotics shouldn’t be used for chronic non-cancer pain. As the risks outweigh the benefits. At bottom, prescription painkiller misuse eventually leads to overdose and death. Though prescribed narcotics aren’t for leisure use, the misuse of opioids creates a physical dependency. When persons become addicted, they require a higher dose to achieve the same euphoria, tolerance. For this reason, prolonged use becomes pain causing -hyperalgesia. Opioid Inducing Hyperalgesia (OIH) hurts beyond the pre-existing pain. Of course, one cannot get opioid-induced hyperalgesia without tolerance. As well, narcotics have an unfavorable follow through on the teeth. Because of neuroinflammation in the brains of people with chronic pain, developing biomarkers to treat these cells (glial protein) would be a better therapeutic aim.
    See article Opioids for non-cancer pain- http://www.neurology.org/content/83/14/1277

  4. Candie at 8:00 pm

    I have RSD. I was diagnosed with it 8 years ago. I am on several different pain meds and if you know anything about this disease it is a very painful disease and there is NO cure. My pain meds help me manage through the painful days and nights. I have 2 kids and i am happily married and my family to be very active. I am able to walk around the block with my family or a very short , otherwise i am in sooo much pain i just want to end everything. And there are many RSD patients who do end their lives because of the pain. I did work with my pain doctor and try to get off my pain meds. And i almost did not make it till my next pain doctor appointment because i could not take the pain. Needless to say my doctor put me back on my pain meds.
    Please put yourself or even one of your family members in our shoes for a day or two. We don’t have some great medical insurance where we can see the best doctors, nor do we have great money because half of us are probably not working. We also don’t always have access to a specialist, and we need our primary doctor to prescribe our high dose of oxytocin, methadone, morphine our any of those meds with a high dose. Please not all of us are bad and we, the pain patients are being treated as druggies.

  5. Meg Taylor at 5:55 pm

    I deal with chronic pain from arthritis, fibromyalgia, autonomic neuropathy, plantar faciatis, and probably other conditions. I worked for over 40 years and fought the increasing pain for the last thirteen years in the workforce. I took massive amounts of ibuprofen for several years to keep arthritis pain at bay to make it possible for me to work as far back as 1986. My kidneys are not working at 100 percent because of that so I am no longer allowed to take aspirin or ibuprofen. That became an issue when the other illnesses began to affect me. I have tried alternative medicine, chiropractic medicine, and allopathic medicine to help me cope with the pain and be as active as possible. My chiropractor helps with my spinal and hip alignments and makes some difference in my ability to walk. I take Gabapentin to help with nerve pain caused by the neuropathy. The narcotic pain medication prescribed to me is the only thing that keeps the significant remaining pain at bay to allow me a somewhat normal life. You seem to confuse drug addicts and pain patients. My brother has no chronic pain. He is living on the streets and is a heroin addict. He loves the high he gets from the drug. I am a pain patient. I maintain a home and remain as active as possible. I do not ever feel the sensation of a high. There is a separation between the drug abuser and the pain patient. I am careful with my prescriptions. They are locked in a safe. I never take more than the prescribed dose. I still have some pain that I manage with meditation and guided imagery. I see a counselor who helps me find ways to cope when the pain is beyond what my “tools” can handle. I work to manage my life without addiction and with dignity. Keep working on the problems surrounding the drug addicts who use drugs to achieve the “high” but leave the pain patients alone.

  6. Anne Fuqua at 10:07 pm

    Barbara S.,

    Please DON’T pass up the opportunity to comment! We desperately need EVERYONE’S contributions. I’m happy to help you….search me on Facebook: Anne Fuqua. I’ve got a pink bandana in my picture. Also, if you contact the blog, I’m happy for them to give you my email. Whether or not you contact me, PLEASE make sure you make your comments to the CDC!

    Anne Fuqua

  7. Barbara S. at 5:25 pm

    I wish I could comment , I just want to be heard and believed that I’m in pain and NOT an addict, I want to have as a much of a normal life I can, without my meds. (By they way they have lowered the dose) I could not work or do much of a normal life, I’ve done ALL treatments they wanted,also tried herbs,vitamins, my lack of quality of life is bringing my mental state down… I HURT,I NEED MY PAIN MEDS!

  8. Aprile Zarobinski at 6:40 pm

    I have been diagnosed for 8 years and the symptoms went undiagnosed since I was 12 and I’m now 39 with Idiopathic Intracranial Hypertension (IIH).

    I have been married for 13 years and have an amazing 13 year old son. I have had over 50 spinal taps since 2007. I tried every possible treatment I could find to help me (acupuncture, chiropractor, nerve blocks, tried almost a hundred different diets, the list just keeps growing). I would be at the ER at least once a month to try to get relief.

    We then started with surgeries. In 2010 I had my first lumbar peritoneal (lp) shunt that failed in less than six months. I had a new shunt put in in March 2011. That one failed too. I asked my doctor why he couldn’t do a Ventricular shunt (vp), he told me I have slit ventricles and the shunt would fail in less then a month. So we decided to do a Craniectomy Procedure and I had tons of staples in my head and a huge scar all the way up the back of my skull. This procedure didn’t help with the pain either. I had another lp shunt put it and that one failed as quick as the others. I had another lp shunt put in in 8/2014 and contracted meningitis they removed the shunt and couldn’t put it back in until 1/2015. I’m in chronic bedridden pain every day of my life. The one and only thing that gives me the ability to spend time with my husband and son is my pain meds.

    Doctors and nurses think I take too much, but my neurosurgeon and neurologist monitor my pain meds. If I have these taken away from me, I don’t think I’ll ever have the ability to get out of bed. Please, please put more consideration into how much these meds can help people. I know addiction is real but I take my meds for one reason only and have never used them unnecessarily. I started taking them regularly because the hospitals were refusing to help me, so to avoid the horrible accusations made to me by doctors and nurses, I had to take back my life and stop letting people in positions of power tell me what I’m feeling and that I’m a junky. But should you take these away, I will lose the small amount of life I now have.

  9. Marian Medvec at 2:52 pm

    I am an older lady, trying to take care of my home still. I am retired. I cannot clean my house and it is distressing. I manage a little at a time but it totally blows my next day. I am so sore I cannot and do not want to even get up. I have a pinched nerve and have been in constant misery. I have arthritis, but it is not like other people’s arthritis. My hands look like 100 year old hands, crooked fingers, swollen, ugly, painful. How are we supposed to go on like this.

    It would seem to be senseless to deprive pain patients of drugs that work. I don’t know who is addicted. I don’t know anything about the real reason this situation exists. I just know I have to suffer for it.

  10. michelle raymond at 1:17 pm

    I have chronic pain and I try to live a normal life. I have a son who is entering his 2nd semester in college, my daughter is a senior in high school and is the captain of her dance team, and my niece who is a freshman in high school, who is active in the band. Needless to say they are very busy. I suffer daily, and without my monitored pain medication, I would not be able to enjoy their lives. I have hurt still with what I am prescribed, but it is manageable. I go to a pain clinic, I have a primary care physician, and many other doctors who are in charge of my care. I understand what the addiction is and yes it is scary, but unfortunately if we take away something that makes millions of people’s quality of life better, because of addicts, they will find another drug. Then there will be millions of people who will be left living a life of miserable pain.

  11. Dorothea Taylor at 12:37 pm

    I have suffered with Fibromaylgia, Lupus and Chronic Fatigue Syndrome plus other assorted illnesses for over 10 years. I am in pain 24/7/365. Yes some days are better than others but I never have a pain free day. I used to get adequate pain meds to help me make it through the day. Now with new guidelines, I am never not in pain. I can no longer work, clean my house or enjoy time with my husband. Just getting out of bed is a hard task. I never dr hopped or tried to get outlandish amounts of pain meds. I just want to be able to do more “normal” things. My friend got taken off all her pain meds with no regard to withdrawal. She unfortunately passed away a week after this was done to her. Until you live the life of a chronic pain sufferer you should not be allowed to tell them what will and will not help their pain. You have no idea how we feel. This decision needs to be placed back in the hands of our Drs not some suits in Washington.

  12. John S at 10:15 pm

    I have read a lot of the comments that were recently submitted to the CDC and I think it would be a good idea for everyone on this site to do the same. Before you send your thoughts and ideas to the CDC find out what we are up against. One trend that I’m sure will carry a lot of weight for their guidelines on prescribed pain medication is the volume of comments from people that have lost children – son or daughter to addiction they claim is due to the over prescribing of pain medication following a medical procedure or accident that started with acute pain and ended in addiction and then heroin.

    Some of the comments are a cut and paste comment that are most likely coming from an organized group using different names.

    Those that are critical of the CDC are pain patients and there are a lot of comments that just say; I’m in pain and you don’t know what you are doing – I need my pain meds. While trying to look at the comments from a neutral perspective I think we need to let the CDC know that yes there are problems and yes we want to help solve that problem but taking the medication away from us or reducing the dose to a point that gives us little or no relief is not the answer.

    I plan on telling my story in detail, briefly but in detail so that they understand exactly where I’m coming from. My medical history and how pain meds have given me the quality of life I lost while trying other forms of treatment. We are not the problem but what we are is a large group of citizens that could be left to suffer a horrible existence if we were forced to live without the medication that restores our dignity and alleviates a lot of our pain.

    We make up the largest group and yet it seems we are the people that get left out of the conversation and decision making. Lets make sure the CDC is aware of how many people need the same drug they want to restrict.

    The CDC will take a bit more interest in comments that are more than a few short sentences and if we can get them to see a ” PERSON ” suffering and in need of pain relief then maybe we can reach the cold hearted SOB’s.

    Thank you,

    John S

  13. Pharmacist Steve at 8:09 pm

    pain pts need to get out there and make comments… the first few I read was “… my son… my daughter… got addicted… stop the opiates from being prescribed.. the opiophobes are out there in large numbers…

    First they came for the mentally ill addicts, and I did not speak out—
    Because I was not a mentally ill addict.

    Then they came for the empathetic prescribers, and I did not speak out—
    Because I was not a empathetic prescriber.

    Then they came for the Pharmacists, and I did not speak out—
    Because I was not a Pharmacist.

    Then they came for me—and there was no one left to speak for me

  14. Stefanie Remines at 1:47 pm

    When you stop people from managing their pain, they’re going to go other places. I have Chronic Regional Pain Syndrome. It’s a debilitating, cruel nerve disease that is spreading throughout my whole body. I’m in pain 24/7 for the last 10 years when I broke my first bone. I understand people abusing prescription medicine, but what about us who need the medicine so we can get up because we’re in so much pain, we do nothing but cry until we’re can finally needing to get up. I’ve have so many UTI’s all because I was in so much pain I couldn’t get up and I held it so long that I accident got a bladder infection. There’s a line to draw, but not this way

  15. Candice at 10:12 am

    When acts of policing did not stop or prevent crack addicts from getting illegal street drugs, you have to wonder what exactly the battle is over. It’s like catching one car for speeding while in a group of 10 cars speeding. In order for the govt to say their war on drugs is working they must show someone is being punished. The only way changes are reasonable is if the ones making the drastic changes are suffering from a chronic pain disorder and having acute exacerbations. The ones making decisions need to be pain doctors, PAs and nurse anesthetists, who treat pain suffers along with the others involved in pain management. I want those who think pain sufferers should just buck up and learn to deal with it, lay in bed in the dark hours of the morning trying to rate the pain that is slowly increasing in intensity as the nerves send impulses to be read by the brain. It’s a sensation that a pain patient rates constantly to determine if the can cook, find someone to pick up their kids, work, take a shower or breakdown and parsimoniously, count out their last doses of their pain medicine. While we live in pain, anxiety and fear if changes streetwise Oxycodone addicts are used to determine if the medication should be regulated more or removed from the market. With the govt control pain physcians fear for their licenses over idiotic rukes then pass that fear down to us, as patients, where we are threatened by med techs who are 22 yrs of age and have no respect for suffering. The power mongering that us passed down must stop so those who are living a live of pain can stop the stress and tension which only increases pain. With monthly UAs for opioid checks we as patients find out its best to check every drug on the urine test check sheet which includes drugs such as, Gabapentin, Alprazolam, Citalopram, Wellbutrin, Trazadone, Clonezepam, Lorazepam, Soma, all opioids and other SSRIS for depression. I feel attacked and punished for needing to claim drugs for my depression or non-narcotic nerve pain. But, if telling a pain doctor every medicine we as patients are on will allow us relief then I’m willing to hand over my rights but not lose the medicine that allows me to move each day. Just so you understand the extent of my pain, I am on a spinal cord stimulator and have many days as a pain level of 7 on a 0-10 pain scale. That means I must learn to juggle my control level and using my medication for break through pain. My nursing career is over, I am a leukemia patient in remission treated at MD Anderson. I want to be able to safely treat my pain without the anxiety of torment by the govt and CDC. It is apparent that allowing those who don’t suffer from pain or understand the pain process of chronic pain with acute exacerbations will not fairly serve those who live in agony. I beg for rational thinking when decisions are made that involve humans living in daily torment.

  16. Scott michaels at 9:06 am

    that and heroin use is exactly what will happen. This is exactly bow PROP intends on profiting. They will advertise phoenix house as the answer.
    THIS IS GROSS MISCONDUCT,EXPLOITATION AND MAL PRACTICE.
    IF WE ARE ADDICTS in their eyes THEN CAPPING DOSES IS THE WORSE THING. WHAT PERSON YET ALONE DOCTOR WOULD GIVE A DRUG ADDICT ANY AMOUNT OF MORPHENE. ADDICTS WILL JUST SEEK OUT MORE.
    THATS WHAT OUR CDC DOESNT. IF WE ARE ALL ADDICTS AS PROP SAYS, THEN WE SHOULD GET NO OPIOIDS EVER AT ALL. SINCE WERE NOT THEY ARE KNOWINGLY JUST PUTTING US IN UNBEARAE PAIN. THAT IS TORTURE.
    I KNOW WHOS GETTING LUMPS OF COAL FROM SANTA.. BALLENTYNE AND SULLIVAN.