Pain Advocacy Groups Tell HHS Secretary Revise CDC Guidelines

Pain Advocacy Groups Tell HHS Secretary Revise CDC Guidelines

A coalition of pain advocacy organizations have written a letter to HHS Secretary Alex M. Azar that analyzes the draft report of the HHS. The public comment period expires next Monday April 1st. We thought the letter was worthy of republishing,

Dear Secretary Azar,

On behalf of the Consumer Pain Advocacy Task Force (CPATF), a coalition of nonprofit organizations dedicated to improving the lives of patients with chronic pain, we applaud the work of the Pain Management Best Practices Inter-Agency Task Force and commend the recently published Draft Report. The importance of this Task Force cannot be overstated, and our coalition supports the majority of its recommendations.

CPATF bases its work on four key beliefs:

  1.   Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions.
  2.   Chronic pain is both an under-recognized and under-resourced public health crisis with devastating personal and economic impact.
  3.   Effective chronic pain care requires access to a wide range of treatment options, including biomedical, behavioral health and complementary treatment.
  4.   Denying appropriate care to people with chronic pain is unethical and can lead to unnecessary suffering, depression, disability and even suicide.

We are pleased to see these sentiments reflected in the recommendations of the Draft Report. As you are aware, Task Force members came from a variety of specialties and federal agencies, and were carefully selected for their expertise. They worked tirelessly over the last year to produce this Draft report. The result is a series of recommendations that are thorough, well-balanced, and easily endorsed by people with pain and the organizations that represent them.

Perhaps the most important takeaways from the Draft Report are that:

  1. Pain is a disease in and of itself, with serious biopsychosocial consequences and a farreaching impact on quality of life.
  2. There is no one-size-fits all or easy fix for chronic pain. Individualized, multidisciplinary, multimodal, coordinated, comprehensive care is vitally important to effective treatment.
  3. There are numerous barriers to appropriate pain care, including stigma; a lack of patient, public, and provider education; poor models of care and reimbursement; and inadequate insurance coverage.
  4. At a national level, it is urgent to dedicate more resources and funding to understanding the neurobiology of pain; identifying and developing safer, more effective treatments; creating and implementing models of care and reimbursement that are conducive to effective care; and promoting insurance coverage for a wide range of pain relief therapies.
  5. As emphasized by this much-needed Report, chronic pain is the most prevalent, costly, and disabling health condition in the United States. Recent research shows that an estimated 50 million Americans live with chronic pain, 20 million of whom live with high-impact chronic pain or pain that impedes activities of daily living. Pain is the leading cause of long-term disability in the United States and is the number one reason Americans visit their doctor. It also costs at least $635 billion in lost productivity and medical expenses annually.

Despite the impact of pain, as the landmark 2011 Report from the National Academy of Medicine (formerly the Institute of Medicine) found, pain is widely misunderstood, underrecognized, and undertreated. The NIH currently spends less than 2% of its annual budget on pain research. Less than 1% of physicians are specialized in pain management, and medical students receive an average of nine hours of training in pain management. As discussed above, there are few effective treatment options and those that are effective for some are not well covered by insurance. The unnecessary suffering chronic pain patients experience as a result is undeniable. Clear evidence of this is seen in recent CDC numbers on suicide, which show that at least 10% of Americans who commit suicide have chronic pain.

Neglecting the widespread problem of chronic pain in America has, in part, contributed to the opioid crisis in which we now find ourselves. Lack of investment in basic research in pain at the NIH has meant that we still do not understand the neurobiological basis of pain and have not discovered or developed safer, more effective alternatives to opioids for the treatment of pain. Likewise, lack of investment in research to investigate the effectiveness of nonpharmacological treatments for pain has meant that insurers are reluctant to pay for these options. At the same time, our system of reimbursement has forced physicians to reduce the amount of time spent with patients and virtually eliminate time spent coordinating care. It is easy to see why health care providers were previously quick to choose opioids as a pharmacological solution to pain.

While prescribing reform is necessary, some well-intentioned efforts to solve the opioid crisis have only made the situation worse for people with pain. Sweeping, blanket restrictions on medication have resulted in unintended consequences for pain patients and had an overall chilling effect on pain care. Each group in this coalition has heard from hundreds, if not thousands, of patients who are being stigmatized for their disease and in many cases, denied necessary medical treatment, forcibly tapered off their medication without recourse, or altogether dropped from care by their provider because the provider feels it is too risky to treat them.

As the Report recommends, opioids should not be a first-line treatment for chronic pain and should be used in conjunction with other, non-opioid therapies. They should primarily be considered in the case of severe chronic pain and in the case of moderate pain only when other options have failed. Patients must also be carefully screened for risk factors for abuse, such as a personal or family history of substance abuse.

But the fact remains that for large numbers of Americans living with chronic pain who take their medications responsibly and legitimately, opioids are a vital treatment option that allows them some measure of quality of life. We strongly support the Report’s recommendations that patients and doctors must work together to weigh the benefits and risks on a case-by-case basis. In fact, we would recommend the Report go even further and recommend a revision of the CDC guidelines on opioids with greater consideration to their impact on the chronic pain patient population. One-size-fits-all restrictions on dosages and duration of prescriptions ignore the reality that each patient is different, with different diseases, conditions, injuries, surgeries, body chemistries, sizes, weights, disease progression and sensitivity and severity of pain.

In the near term, we must restore balance to opioid prescribing. In the long term, we must invest in the discovery of new, more effective and safer treatment options for people living with pain.

As a nation, we have not dedicated nearly enough resources or funding commensurate with the impact and cost of pain. The Pain Management Best Practices Draft Report represents a significant step forward in correcting this. Now, we must work tirelessly to ensure the Report recommendations are given the attention and funding they deserve.

We applaud the Task Force and thank you for your role in its establishment and your continued support of its important work.

Sincerely,

American Chronic Pain Association

The Center for Practical Bioethics Chronic Pain Research Alliance

CHAMP (Coalition For Headache And Migraine Patients)

Global Healthy Living Foundation

International Pain Foundatio

Interstitial Cystitis Association

National Fibromyalgia & Chronic Pain Association

The Pain Community

RSDSA (Reflex Sympathetic Dystrophy Syndrome Association)

TMJ Association

U.S. Pain Foundation

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Authored by: Ed Coghlan

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jo wolf

My name is Jo Wolf. I am a 70 year old retired Medical Social Worker with severe Degenerative Disk Disease. Pain impacts every daily activity in which I engage. Pain interrupts my sleep on a nightly basis. Activities such as gardening, volunteering, social events and travel are greatly curtailed by the degree of physical suffering I must endure to participate.
For 8 years I have done Boot Camp at least 4 days/week believing exercise will help me stay out of a wheelchair. I eat healthy and take supplements recommended for inflammation that underlies the pain response.
What helps my pain the most? What most improves my ability to move about? The moderate dose of opiate pain medication I have taken for 4 years. Not once, outside of a fractured wrist, have I needed to increase my dose. The mistaken belief that one must have ever increasing doses of an opiate medication to maintain it’s efficacy is a myth. At least in my case.
My hope is that all chronic and acute pain sufferers will have access to ALL forms of pain relief. The medical community has turned into a cruel entity by being forced to deny suffering patients pain relief. The medical community is caught in the middle between laws directed at drug addiction and a desire to help patients in pain.
I would ask that a revision of CDC Guidelines related to opiate medications include:
1. Training for medical professionals in knowing the difference between addiction and dependence. Dependence occurs in all opiate users over a short period of time. Addiction includes self destructive behaviors such as not taking medication as prescribed, engaging in illegal behaviors to obtain opiates and/or doctor shopping.
2. Training to improve the ability of medical professionals to identify more accurately a patient’s actual or potential for drug abuse.
3. Training to help medical professionals know the suffering and impact of pain on a patient’s activities of daily living. In other words, increased empathy, less stigma.

Debi Miller

my sister took her life, because of her back pain that she sustained from 3 back surgeries. Doctors turn their backs on her. And she could not live with the pain anymore. So she chose to live in God’s country. I miss her already. But she planned it so no one would even know. Until the house cleaning people found her in her room. with the letter that crushed the family apart. I’m sorry this is my second sister to take her life. Because of pain mental anxiety physical you name it pain.
And the saddest part is no one cared. But I do very much. As I’m the third sister I live with RCPS / RSD. I sure as hell didn’t ask for it. But no one cares.

Marla

It’s really not that difficult for our doctors to know who is in actual need for long term meds for chronic pain. Stop making us feel like addicts. We can barely function and the hoops we must jump through are ridiculous and outrageously expensive to boot. Our healthcare system, including mental health, is a joke. We need Medicare for all and people in charge that are actually trained for their job. Greedy, soulless, out of touch aristocrats got us into this mess. Too many people are suffering needlessly to the point of taking their own lives!

Thomas Dwight Ingle

Dwight Ingle
Retired and working 40 hours weekly, I have never had even one problem w/my pain meds but have been cut from100 20 mg oxycodon @10mg every 3 to four hours(apps 7 10 mg pills daily) being approved to drive a school is in NC and no driving violations since 1984. I have bone on bone l4 and very many neck problems according to recent MRI
I need medication to continue working my job, etc
Thank you
Sincerely,
Thomas Dwight Ingle
31 Old Logging Rd
Asheville, NC 28804

PS. My meds are @ 45% currently of my 100 20’s

We must also develop much better system for reporting adverse reactions to pharmaceuticals. They are getting more and more dangerous in the hunt for profit. A new medicine is usually stronger than another one, which means a worse effect on the body over time. The FDA needs to do serious soul searching on how many deaths and disabilities they cause every day by taking the word of the often slanted, immoral research that drug companies do , like throwing out the adverse effect patients from a trial study to make the drug look safer than it is. Patients need a simple post card addressed to the FDA put in every bag of medicine that says if they had any negative effect, let the FDA know so others will not be harmed and the optimal medicines are used with the least harm. This often means an old drug. I’m glad the floroquinolone antibiotics are finally recognized as causing countless innocent people of being permanently disabled with painful tendon, endocrine system, small fiber skin neuropathies and many other disabling life altering issues that cause countless suffering. The gov. approves it, and then takes away the pain meds. what a messed up world. let’s fix the whole system from lab, to pharmacy, to patient. Paul Cahan

It’s great that there are smart, sensible and sensitive people who are working to bring truth and fairness to the way people in chronic pain are treated by doctors and medical systems . I was a professional,who devoted 25 years in Corporate Relations for New York Blood Center ensuring a safe and adequate blood supply and I am now often treated as just another addict when they misinterpret a computerized printout. There is a reason for any change in doctor, or pharmacy. A professional is called a red flag. I am disappointed in the way pain patients are treated by arrogant doctors who have felt they have more power now to understand a human being in 10 minutes of paid Medicare visit. The system is broken in many ways.

Hope Gone

The short term needs to be very short, and I do not think much is going to help. Our doctors are terrified of being prosecuted by the DEA. They have seen and are still seeing what is happening to other doctors. All it took for my doctor to start forced tapering after we were promised that this would not happen: was the DEA to make a visit to my doctor. That was the second taper I had done but this one was one half of my medication over 2 visits! Then I was expected to do it alone as when I tried to make an appointment when I felt at the end of my rope; I was told I would not be able to come till my next scheduled visit which was about 3 weeks away! Dear God, we are not dying from our medications. We are killing ourselves when we finally realize that our pain is far more than we can tolerate! Yes, we are losing hope very fast!

Michelle

I am combat disabled veteran and we are affected the most by the new laws. I have 23 disorders that cause severe pain. I finally got to go see a pain management doctor and I got an epidural pain shot that hurt so bad. I asked about pain meds and the doctor told me that the VA said that they aren’t allowed to give pain meds to veterans.

Kit Carson Verl McCown

To Whom It May Concern:
My name is Verl Kit Carson McCown, GG. I am 56 years old male and was paralyzed from the upper chest down, spinal cord injury level T-3/T-4, 27 years ago March 28th 2019. In that entire time opiate pain medication helped me live as normal and functional life as possible. They helped me become a jeweler, hand engraver and a graduate gemologist through the Gemological Institute of America in 1996. I’ve moved across the country with my father and was a functioning part of society. Due to far too many surgeries to remember and recovering from them this past 5 or 6 years, I had to give up my profession. Even then the pain meds helped me be active and able to see family, go to appointments, shopping and have a humble but fulfilling quality of life. That is up until one year ago, when I was forced to find another primary care provider that was willing to take on my healthcare and pain management needs.
Since then, I’ve been to four primary care providers trying to get help and have been to two pain clinics in the Portland area that have tried to help as minimally as possible. There is a fear with doctors that if they prescribe opiates, they will lose their practice. Mean while my quality of life and health have greatly suffered. In fact if I cannot get the pain relief I need I will die from high blood pressure or other heart related problem. Now, I’m not afraid to die, in fact I would welcome death any day to end the constant pain I’m in. I was just hoping to out live my mother, Polly McBride. An icon in the Portland tango community. I wasn’t able to see her and my sister over the holidays due to the misery I’m in. This isn’t fair to me or them. The lack of pain management and relief for chronic sufferers is malpractice. These past pain clinics and doctors have cause me for greater health problems compared to where I was a year ago.

Amy Pijanowski

There are so many barriers for patients depending on the I dividual situation. If you have insurance, maybe all you do is spend your time fighting them for coverage of everything. Even if new recommendations are made, it doesn’t mean my insurance will cover them or for a reasonable cost. Adjunct therapy that are preferred over opioids are not cost effective for most patients. It’s just reality. Cost is a real life concern.

JOHNNY BROWN

Great letter I hope he gains a clue to the suffering going on.

Frattini Mark A

What I woul love to see is if a doctor who drops a patient inappropriately off pain medication or reduces it so far it’s worthless like my doctor did, making me quit 75mcg fentanyl patch cold turkey after 10 years of use, that if the patient commits suicide due to poor or improper patient care for pain that the physician be charged with manslaughter and have their license pulled. If doctors were held accountable maybe there will be less suicides. Since my suicide failed after the suicide help line said they felt horrible about my circumstances but couldn’t offer any help or even a glimmer of hope. There was nowhere else to turn. The guy at the suicide hot line even begged me not to kill myself but said I understand if you do. That’s how hopeless us with debilitating non stop pain feel. Every day I have to contemplate , will this be the day that the only way I can get relief from this horrific pain is to end my life? That is how our pathetic system works.
If I committed a crime and was put in prison I’d get better pain management care compared to nothing. No physician in Northern Michigan will help a chronic pain patient even though I have non length dependent small fiber Sensory Neuropathy and Cardiac Autonomic Neuropathy. I know for a fact because I called every doctors office from Muskegon to Traverse City Michigan and not one would help. I have never abused my medicine and often try to live off of less. But now I have nothing for pain so I’m stuck in bed 24/7 with such severe pain I just wish I’d die. I have died a thousand deaths with these diseases and have zero help. Congratulations to the Americans Medical Associantion for your concentration camp type care of patients in pain. Keep up the great job.

Mark

About our government and pain, they treat it like it is all in your head….

Mark

I have been suffering with chronic pain for many years now.. At first I was able to get meds that actually works, then after the DEA got involved in making doctors afraid to treat patients effectively, now the only relief is a hot shower or soak in the tub and go to bed and hope for the best….. Marijuana does treat chronic pain and Glaucoma and a huge amount of other illnesses and disorders… It and mushrooms should be LEGALIZED… It seems our politicians are afraid we will get high, it doesn’t do that if you are in pain, also in places where it is legal the crime rate has dropped.. There is no where as much opiod or herion abuse… Chronic pain is not a fictional thing, it is real and the lack of effective treatment is exactly what is driving some to seek relief any way they can get it… If the government would let Doctors be Doctors that alone would help a tremendous amount to relieve the overdose crisis… Allowing Doctors to treat their patients and Marijuana were Legalized on a Federal Level, the people with chronic pain would have much more quality of life !!

Marilyn Pittman

Well said. I hope they listen to our pleas for help!

LYNDA LUTZ

This was very well put. We do seem to be invisible to many. I have had chronic pain for years. I also have advocated for my patients when I was a working nurse. It seems a machine called a PCA,pain controlled analgesia, is now almost non existent. It was a wonderful device. In my 50 years as an RN programming these machines according to doctors orders, I never saw one malfunction nor did any patient crack the code. They were in too much pain to try anyway. I wonder if most doctors even know how to order dosages for it today. I doubt it very much. I hope your letter was taken to heart and they listened. Thank you for all your hard work for all of us who suffer day in and out with pain.

Stella Lendrum

Thank you from the bottom of my heart for standing up for all of the unseen chronic pain patients in this country.

Steve Abbey

If medical cannabis is supposed to stop chronic pain why doesn’t the cdc influence all pain relief and insures to establish a regime to pain patients that can’t afford the right doctors they have now, and have the same pain doctors the patient have now to write the prescription and there insurance pay for the right cannabis for the need of the patient in need…I often hear that it is great for chronic pain, but maybe it depends on the individual I don’t know but it is a thought, and it could be a reality in the future if it does work for some and not others that would be a big help!!. Meanwhile I still suffer daily all day. I have said before if I had my same medication I had 2 years ago I would still be breaking them up and take as needed and never take more than prescribed for that day. And I would always have a few left at the end of the month. Now I struggle to make it to the end of the month and deal with a lot more pain. If I was given 10,000 doses of the same medication i took two years ago, i would still only take them the same way, just because i don’t want to be a staistic. But i will probably die from stress related causes from chronic pain, I can almost guarantee it…

Dr. William Fusfield

Denying anyone adequate pain treatment is not merely “unethical,” but a direct violation of the UDHR , to which the US is an original signatory. The UDHR is explicit about stating that refusal to provide such pain treatment, as is being done right now to roughly 25 million Americans, constitutes a from of “torture” and is thus unacceptable in any UDHR signatory countries.

Laurie

I seriously doubt I could have restrained myself from a sarcastic comment or two in that letter. It’s a bit too respectful for me, knowing what I know about how the government treats it’s citizens in the past several years/decades

Jeanette French

thanks for doing this, !!

dave

Secretary Azar may be paid by tax dollars but his fidelity is not to the American public and has no vision to do much to improve pain care. He will likely politely dismiss the concerns raised in the letter or make false pious asseverations about the good work of DHHS.
DHHS, NIH, FDA, DEA, CDC- are no friends to people in pain. They do not believe outsiders- the American public should be taken seriously if they do not share the beliefs, paradigms, practices, assumptions of Government officials.
Our framers- Jefferson <madision, Franklin- warned us of the government we have today. They are tyrannical autocratic despots and too far removed from the just demands of people in pain.
Ill remind advocates here that the passage of CARA under OBAMA almost had no provisions for pain. When the Blueprint for pain care in America lead to the National Pain Strategy- Congress ensured there wouldn't be adequate funding for a pain care strategy- and so the NPS is dying due to the jaunty disdain of Congress toward people in pain. Now the HEAL act has lots of money but no vision to lower or prevent pain. Pain care is a business and has no mission and too few morals. Government is no friend to people in pain- and neither are experts in advisory committees in DHHS. It is up to people in pain to call for real reforms and restore sanity and humanity in pain care.

dave

It will be interesting to see how Dr Azar responds to this letter for it pits pain care advocates wishes with those of not just DHHS but Congress, as well. Clearly, DHHS is beholden to Congress and not the American public and Congress has failed to be politically accountable to people in pain on the issue of opioids.
The issue with opioids raises issues with democratic accountability, medical consumerism, political responsiveness and intellectual virtue. My position is that government has no right to interfere with the right of people to seek pain care of their choosing. Government and medicine has wrongfully acted as if they own peoples pain and can do whatever they wish with regard to pain and suffering. They have violated the social contract and set a poor example for society. They lack the caring, the vision, the motivational intensity to serve people in pain well. Just today I challenged a senior policy official at NIH on the lack of vision and values- her response was to duck and dodge- “its above my pay grade” to deal with those issues.
The lives of people in pain are not the property of medicine or government. It is both infantilizing and the height of paternalism of medicine or government to deny the basic right of pain relief.
As opioids have been used for over 5000 years and government has had the benefit of learning from 1000’s of years of history and over 18,000 clinical trials on opioids and the International convention that lead to the Harris Act regulation a century ago- it is clear the judgment and decisionmaking of government regarding opioids is terribly deficient. Instead of preventing pain and lowering its prevalence- government efforts have lead to an increase in the prevalence of pain and needless to say have lead to much more treatment burdens and suffering of people in pain. There is no good reason to trust government to do what is in the best interests for people in pain.

Gary Raymond

I cannot understand why the doctors in Central Virginia are playing possum. Except that they are getting paid by the Feds. Here, a pain management clinic is afraid of loosing its license. But they have no patients. You cannot inject diabetics with cortisone. So, either way it is financial disaster for the clinic. A physician’s primary role is to advocate for a patient who is incapable of doing it himself. So, why are not the doctors pounding on the doors of the HHS and CDC? Doctors have been blamed for over-prescribing. The problem is and always has been recreational abuse of illegal drugs. Add Fentanyl to the illegal drugs and we have chemical warfare within the United States. We should pay North Korea to bomb Fentanyl factories in China and Mexico. While that is happening, we must abolish the CDC. They cannot and do not prevent disease. All they do is compile statistics that others have collected and persecute those in chronic pain. Chronic pain is a disease – the CDC should be eradicating it. Not persecuting those who are suffering from it.

Bella

This issue has it’s roots in something so much bigger than many realize. The CDC has stated the death rate has risen since 1999 and that this figure keeps pace with the increased sale of opioids. This is more about the U.S. Death rate than anything else. The death rate affects the future of tax budgets as governments counts on revenue generated by consumption and employment taxes. I hate to sound cynical but until the lawyers have filed all suits and are able to realistically negotiate with drug companies, this won’t be ending anytime soon. An in fact, it hasn’t even piqued yet. I too suffer from chronic pain but what concerns me more are those who are in end-of-life scenarios and are unable to receive pain relief as they transition to the next life. Still, CPATF is doing a great job mitigating this upward spiral of hysteria. Keep up the public awareness campaign:)

Cynthia

Amen! Wonderful letter. It says everything I would say. Besides punishing Pharmacy workers who refuse to fill after specific doctors orders ot humiliated chronic pain patients. And when you call to complain to corporate, the minute its about chronic pain they could care less how they treated you.
And Pharmacist trying to play Police Man for no reason.

Terri James

Bravo, well said! Just because they can’t see us; doesn’t mean we’re invisible.

Heather

Excellent.

Barbara Snow

I don’t know how any of this will fly in the face of Trump. With him now on the war path on medical dollar’s. With a Republican run Senate and state governors, and so many on the war path on medicade that so many of us depend on. And their continuing war on opioids? Not sure what to think or feel.

Thomas Wayne Kidd

Know that suicide is not on my list or on my mind. In fear that to little and to late will be what we will get from our legislators. This insanity has been going on now for way to many years. I apologize for my sloppy writing, as I am not feeling very well. Thanks for your understanding.

Thomas Wayne Kidd

I am a 30+ year chronic pain sufferer and I am at a very bad time in my life. I have for a big portion of these years fought for my treatment. I have been abused and treated as a criminal. I also have Narcolepsy and this insane mess has almost destroyed my treatment for this central nervous system disorder. I have tried to discuss this with my doctor but only get excuses or they change the subject. I am going to be 67 years old in July and I near the end of being mistreated and treated as a criminal. I could understand perhaps if I had repeatedly broken the contract I was forced to sign to receive pain medicine. My doctors have many times broken their agreement with their patients. I not had one UA that came back in violation. Yet I had my daily dosage reduced from 5=10 mg. Per day to 2=10 mg per day and I stay in pain. None of my pleas did anything but bring excuses for the doctor, nurses and the other provider at my clinic. A couple of weeks ago at the local ER I was talked down to and told to leave while Sheriff’s deputies and city police mocked and jeered me and my wife as we left the ER. They followed the ER providers to every person who came in. We are being treated worse than animals, in fact animals are preferred above us. Kentucky Senate Bill 54 was just signed into law by our Governor but it will do nothing I fear for people such as me and thousands more here in the state. I am glad that bill was put into law, but what about the real problem? It has been tried twice some 20 years ago to take me off the Methadone which I am taking but when I bring this up I flatly ignored. I am depressed and have anxious moments daily. Just a few years ago I was taken of Klonipin 1/2 mg tablets which did me sometimes 2 months, yet I was deprived of them. I also have Narcolepsy which has been messed up with my reduction in pain medicine. I have been ignored when I try to talk to them about this as well. I am soon to be 67 years old what will I do???

Diana

Thank you for all the work you’ve done and the research I’ve been in chronic pain for years and had to go through withdrawals when I went and move to the state of Arkansas please please please review this and make it not demeaning to obtain opioids for some relief my quality of life right now is horrible