an angry man screamin

The CDC has issued new guidelines (JAMA, March 15, 2016) that strongly urge doctors to stop prescribing narcotics to patients with chronic pain. This public health organization believes its mandate will reduce deaths from opioid overdose. What the feds have not considered is the impact on people with long-standing severe pain, especially if they are disabled.

The Drug Enforcement Administration Changed the Rules:

In the last couple of years there has been a huge effort to make it harder for doctors to prescribe opioid pain relievers. In the fall of 2014 the DEA made it much harder for patients to obtain hydrocodone combination pain relievers (HCPs such as Lortab, Norco, Vicodin, etc). Previously, prescribers could call in or send in an electronic prescription to a pharmacy and could give a pain patient several refills. Now, patients can only get a 30-day supply and must visit the doctor’s office each time they need a new prescription.

Stories from Readers in Severe Pain:

The new DEA scheduling change has made it much more challenging for a patient who is disabled or in severe pain to access an opioid medication. Here are just a few stories from hundreds of readers who responded to our post on the DEA decision.

Stefany in Maryland shares:

“I have had 10 orthopedic surgeries–two on my back, plus a spinal fusion. I have also had four hip surgeries. These are only a few of the many surgeries I have had.

“I used to hate pain medication. I did all that I could to avoid taking opioids, relying on 800 mg of ibuprofen instead. Sometimes I try to avoid pain medication, but it is physically impossible. I hurt all over and become so miserable when I am off my meds. Since there is such a strict limit on them I usually run out. Trust me; I do not wish to be on them, but the alternative after 10 surgeries is basically impossible if I am to maintain two jobs and college classes.

“While I completely understand the DEA’s reasoning behind their new laws, all they are accomplishing is making people like us live in hell and for the drug seekers to turn more to heroin. You cannot control the people who are drug addicts. To punish people who do not abuse pain medicine and need them to live a more functional life than one of severe depression due to pain is really unjust.”

John in College Station, TX writes:

“I have been taking hydrocodone for over 25 years because of a severe accident. I have had a total knee replacement and neck fusion surgery. I have three bulging discs in my lower spine with nerve damage in my back.

“Last year the doctor said no more hydrocodone, per the new law, and changed it to Tylenol #4. It’s 80 percent less effective.

“Why did this new law punish me? I was barely surviving with the hydrocodone, and now this. I call it abuse to the elderly. I have a track record of 25 years of taking my hydrocodone and NEVER called in for extra or EVER abused it. Now I suffer in severe pain because others abuse it. The DEA, who got this law passed, did not think how it would effect the people who really need it to survive.

“I’m only 55 yrs old, and I’m scared to death what the rest of my life may become. I do not wish harm to anyone but if the people passing these laws ever experience the pain I have they would never have never passed such a law which amounts to ABUSE OF THE ELDERLY.”

Jake the Vet:

“I am a 28-year-old army veteran. I have a spinal cord tumor located in my nerves and am consistently in extreme pain–8 out of a possible 10 points on a 1 to 10 point scale.

“All I can get from my pain management doctor is a back brace, anti-inflammatories and acupuncture in my ears or gabapentin, which makes me feel awful. I have seen three neurosurgeons, none of whom will touch me. What am I suppose to do? Things need to change in this country. It’s an outrage!”

Carolyn in Nevada:

“I too have been taking hydrocodone for many years for chronic pain. Today I went to the pharmacy and was told I can no longer have it. My doctor prescribes it but the pharmacy says no. I’ll be spending my days in bed, I guess. May as well be dead.”

Charles in Ft. Worth:

“I was in a bad elevator collapse and have numerous spinal fractures as well as bulging, degenerated disks and bone spurs. I have lost two inches in height because of my back problems.

“I am living in pain I wouldn’t wish on my worst enemy. I need pain meds and I can no longer get any refills. My pain is making my life unlivable.

“The new laws have caused more damage than you can imagine. My mobility is very limited. I can no longer get out of bed or carry on my daily duties as I was able to before the laws changed last October. I feel my life is over. I can’t live with this pain. I don’t know what to do.”

The CDC’s New Guidelines:

In essence, the new federal opioid guidelines state that narcotics should not be prescribed for chronic pain patients. Instead, doctors should recommend acetaminophen (Tylenol) or NSAIDs like aspirin or ibuprofen. Other suggestions include cognitive behavioral therapy, exercise therapy or antidepressants. We suspect that there are many patients, like those above, for whom such suggestions will not be met with great enthusiasm.

For acute pain, such as after surgery or an accident, the CDC recommends that doctors prescribe opioids for no more than three days. Really? Some “acute” pain lasts substantially longer than three days!

The CDC acknowledges that cancer treatment may require opioid medication during the active phase of therapy. What the CDC has not taken into account is that cancer survivors may have to deal with chronic pain. The president of the American Cancer Society Cancer Action Network said it eloquently:

“Pain does not end when an individual completes treatment. Most often, cancer patients deal with lasting effects from their disease or treatment including pain for a significant period of time or indefinitely.”

The CDC guideline does not seem to take this into account.

Walking the Tightrope:

We recognize that there is tremendous abuse of narcotics in this country, but we are not sure the new guidelines will help reduce the problem. We have not seen convincing evidence that making it harder for chronic pain patients to access drugs like hydrocodone will make a huge difference in abuse or overdose deaths.

We also believe that it is virtually impossible to generalize about the most appropriate treatment for people with severe, chronic pain. Some people will do well with cognitive behavioral therapy; others can only function on opioid medications. These drugs allow them to work and function with dignity. They do not abuse the pain medicine, do not increase the dose and do not sell their medicine to drug abusers. They are about to become vulnerable to a huge federal mandate that will impact how physicians practice medicine.

It is our belief that the CDC should not tell physicians how to practice medicine, especially when it comes to something as complex as chronic pain. Each patient needs to be evaluated individually and treated with respect. The new guidelines will likely scare many doctors away from prescribing potent pain killers for longer than a few days or weeks. That could mean some patients will live in agony with no acceptable treatment through no fault of their own.

Share your own pain experience below and your thoughts about the DEA and CDC rules and guidelines. Please vote on this article at the top of the page. Here is a link to hundreds of reader comments about the DEA’s decision to make it harder for patients to get a prescription for hydrocodone-containing pain medicines.

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  1. Alice

    I think this is so wrong. We suffer from pain and have been on some kind of pain meds for this pain and now all of the sudden my doctor says I can’t give you anymore pain pills. I never abused them in my life, I only take them when i can’t take the pain. This is wrong. Doctors should treat everyone according to their medical problems. We are not ALL drug addicts but treating us that way is so wrong. It should be illegal to take our meds away from us. I hope you have pain some day that you can’t handle. I wonder if this new law will ultimately make more drug addicts bc people who live in horrible pain will go out and get something else. What kind of a law is this?? You don’t care about people. I really do think their is something else going on here. Maybe you want people to go get something stronger. Maybe you have a stock that you want to sell? I don’t know but I do know it’s not right how you are treating people like we are dogs.

  2. Susan
    New Jersey

    I have been on pain for 12 years now, 100% documented!! I was a widow at a rather young age, and worked as a server double shifts 7 days a week to pay for my husbands funeral and to keep a roof over my head and child. I worked in pain that was off the charts, but did what I had to do. I never asked my pain management Doctor to raise the mgs.

    Now 8 months ago I fell off a 4 inch step that I did not see and broke my hip and femur. I needed them to increase my meds bc the pain was so bad that I would shake. 5 months later they told me the surgery had to be redone bc it did not work, Now I also have 3 fractures in my spine and the pain is so bad that all I do is cry. I have no quality of life at all.

    All I keep saying is why would they let a 60 year old women live like this? It is inhuman and barbaric. I cant walk, sit, stand or even lay down without horrific pain. Why or should I say how can the government let people like us suffer? I think this is unconstitutional. They may as well kill us instead of us living like this 24 hours a day. Why? Why/ Why is this happening I take so much Motrin during the 24 hours that I barley get any sleep bc of the pain, I will probably die of kidney failure.

  3. Tracy

    Within the last year and a half, I’ve been diagnosed with osteoarthritis and sarcoidosis. I’ve also had five spinal surgeries. I have had two surgeries to clean up my joints…one on the left knee and one in my right shoulder. I have had pain management. But I haven’t been treated for the sarcoidosis or osteoarthritis.

    Both of these diseases cause tremendous joint pain. And my blood levels that indicate autoimmune disease and inflammation are ridiculously high. I received Norco for pain (30-day supply) from my PM doctor, but I know that will end soon, and I’m not receiving any treatment for the autoimmune diseases.

    I feel like I’m pretty much going to live out the rest of my life hurting and eventually die in pain. I’m only 48. I’m a law enforcement officer. What did I do to deserve the government’s uncaring ignorance?

  4. Faith

    I have had multi-level spinal fusion surgeries with bone grafts and several discectomies.

    I have been taking hydrocodone responsibly for 19 years and these new rules are about power and control. Let the oversight be on the abusers ( Dr.s and addicts alike ) . Leave the truly disabled alone and allow us to live with some relief and keep our dignity.
    There was nothing wrong with the medication while Big Pharma made over 1 trillion dollars on the medications.

    I was recently prescribed a medication called Gabapertin a seizure medication because the Physicians Assistant at the Spinal Pain Clinic I go to has become so frightened by the new restrictions they now after 19 years have determined my pain is in my nervous system.

    I clearly have degenerative skeletal health issues , proven by CT Scans and X-Ryas. The Clinic I go to has no neurologists on staff yet they have determined after 19 years of pain relief from opioid medications.

    • Faith

      I have posted this once already and the moderator took it down for some reason. I changed some wording that would possibly have been helpful to some people on this forum.

      I hope what ever standard I went afoul of in my original post has been remedied by editing my post and the moderator will allow this post to stand , otherwise this is not truly a forum for people to truthfully and freely speak of their experiences.

      I have had multi-level spinal fusion surgeries with bone grafts and several discectomies.

      I have been taking hydrocodone responsibly for 19 years and these new rules are about power and control. Let the oversight be on the abusers ( Dr.s and addicts alike ) . Leave the truly disabled alone and allow us to live with some relief and keep our dignity.

      There was nothing wrong with the medication while Big Pharma made over 1 trillion dollars on the medications. ( if this truth is what got my post taken down please just remove it and not the entire post )

      I was recently prescribed a medication called Gabapertin a seizure medication because the Physicians Assistant at the spinal pain clinic I go to has become so frightened by the new restrictions they now after 19 years have determined my pain is in my nervous system.

      I clearly have degenerative skeletal health issues , proven by CT Scans and X-Rays. The Clinic I go to has no neurologists on staff yet they have determined after 19 years of pain relief from opioid medications to give me a medication designed for treatment of seizures because they have decided after several very intense skeletal surgeries my pain is nerve related and has very dangerous side effects including destruction of my liver and kidneys.

  5. Susan S

    I have battled cancer now for 7 year and 8 months hospice is coming out for home health care. My cancer is spreading, I have other pain ailments and I don’t get a damn thing for pain…Cancer patients “may” need it during the active phase of treatment like the American Cancer Society said most cancer patients hurt indefinetly but what really blows my mind is that it was never mentioned about Stage 4 terminal cancer patients like me.

    I lay in bed every day crying my eyes out, hard to care for my son… people in 3rd world countries get treated better. The war on drugs is a joke and has been..The truth.pain pills don’t cause heroin abuse the dang government has!! I promise this legal or not, they keep on I will take it in my hands to get what I need to control stage 4 cancer pain because it should be a felony to make a cancer patient that it terminal suffer…may they get what I have and feel every pain to the bone!!!!!

  6. Paula
    Dallas, Texas

    Totally agree. Addiction is a real problem but it’s wrong to make people in chronic pain suffer when they are capable of using opioids responsibly. I mean, cars kill people everyday but we don’t just knee jerk say, “Well, then-NO ONE can drive a car ever!” This is tantamount to that logic. Any thoughts about what we can do to fight What efforts are bein made if any, in this direction?

  7. Cassie
    Los Angeles

    I’ve had 7 brain surgeries, at the time during my brain surgeries 10 years ago I was treated with the appropriate pain releivers. When I wa disagnosed with autoimmune Pancreatitis, autoimmune hepatitis at the same time 4 years ago the docs barely gave me anything to cover the abdominal pain.

    Let me tell you, my brain surgeries were a cake walk compared to this pain that lasted for over 9 months. The doctors couldn’t get it under control. I was 60mg prednisone and all these other immunosuppressants and I still had severe pain.

    I had to sleep sitting up. Now, I have severe disc degeneration, scoliosis, osteoporosis, osteoarthritis and bulging discs and the docs will not give me anything for the pain, except a muscle relaxer and Tylenol.

    This whole overreaction to the abusers has really hurt all of us who are chronic pain patients. I understand trying other avenues of therapy for pain, but just can’t cut every one off at the knees.

    I wish the people who made this decision, one day are in the shape some of us are in and they will have no access to pain relief, due to the laws they made. Sad that I had to be this way, but no one knew your pain until they are in your shoes. The they say oh I’m so sorry.

  8. Kathy

    Severe arthritis in hands and knees. Diabetic neuropathy in feet and legs. Degenerative disk disease. Fibromyalgia.

    I was taking about the lowest dose possible of hydrocodone and never abused it, although against my pain management agreement I was often remiss in getting my refill because I could not get a ride to the Dr (suffered for that). There were more and more restrictions and I could not maintain the trips to the Dr every month due to no transportation. Quit the opioids and decided to try life that way. Did not work at all; spent way too much time in bed.

    Now, they have me on three non-opioid drugs, all terrible in their own way, to make up for not taking the Vicodin. Doesn’t work very well at all. Marginal relief and haven’t had any sleep for about three months.

    But yeah, I guess I’m doing my part to stem the tide of heroin and fentenyl (sp?) coming from Mexico and China. (end sarcasm)

  9. Donna

    I’ve had a stroke and cancer, if they take away the pain meds I will die, the pain from my stroke is unbearable, the pain meds help me to tolerate the pain, I pray everyday that this does not happen, this would be cruel to take pain meds away from those who have had cancer, stroke, and many other types of pain, I believe there will be even more deaths if the pain meds are taken away, I’m sure that the people in the cdc have family members who may have illnesses or an injury of some sort who need pain meds, why can’t they find out from those with severe pain before they do this, taking pain meds away will be devastating.

  10. Mary

    Having had Type 1 diabetes my whole life has resulted in peripheral neuropathy. The symptoms are burning, stabbing, electrical shock pain which makes it impossible to sleep or walk for everyday activities. When first diagnosed, all alternative therapies were tried with no relief.

    Now, I visit a pain doctor who prescribes narcotics, which has been the only treatment to offer any relief so I can engage in activities, and sleep! I take the smallest dose possible. If my pain meds are removed, my ability to function would end.

  11. Barbara

    I had a brain stem stroke 6 years ago about two months later I started to get lightning pain in my face I’m told by several doctors they think it’s trigenimal nerve damage from the stroke they call this the worst pain known to medicine or the suicide disease I have no pain meds can get any I was up all last night with a swollen face the pain is unbearable I’m incapacitated by this I don’t know how much more I can take We should not be punished for a small few!

    I can’t even get ER doctors to acknowledge I’m in pain they tell you it won’t kill you but I beg to differ! my blood pressure shoots up to 190/120 not good when you’ve had a stroke I can’t even swallow when this TN pain is active my heart skips and races I would not wish this on anyone!

  12. Alfred B. Jamison

    I’m in severe pain and now I’m worse. I don’t need any old men my age telling me what I can or can’t take.. I think the United States is selling heroin, why else would they remove the opioids, other than to push addicts into buying there product. I think the dea is manipulating the public and the people in chronic pain are paying for it

  13. Anthony
    Doylestown pa

    I have a broken back and I’m disabled and I’m considered crippled but yet I can’t even get moderate pain medication to help me sleep or live without extreme pain. I understand some doctors and patients abused the system but unfortunately the disabled have nothing to do with those kind of people. The DEA and government should change these rules and let people with chronic pain get help if they need it. One situation has nothing to do with another. I have been in severe pain since my accident happen due to these absurd rules..they should be changed back asap.

  14. Bea

    At age 70, with severe arthritis in both knees and lowest three vertebrae of spine. The discs are bulging and I have sciatica from it. Knees wake me up several times a night, so I never get 3 hours of continuous sleep. Cannot take NSAIDs because I needed so much that it gave me a bleeding ulcer and I have needed 3 blood transfusions six years ago. Sent to pain management. Have never asked for a bigger dose, never abused, never sold meds. Medicare won’t pay for chiropractors, acupuncture, or massage. PT is unbearable. I still cannot retire, I have to work. Now they are cutting down on the meds and don’t believe in medical marijuana. So, when I have a flare up, which is accompanied by IBS, I may as well die. No one who has never had chronic pain cares because they don’t feel it. I’m done for very soon.

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