Medical Marijuana Will Not Cure the Opioid Crisis

By Roger Chriss, Columnist

There is a strong push underway to utilize medical marijuana as an alternative to opioid pain medications.

“There’s a large group of patients who have chronic pain who rely on opioids,” Dr. Charles Bush-Joseph recently told the Chicago Tribune. “Those are the patients who would benefit from medical cannabis.”

Indeed, medical marijuana and synthetic forms of cannabis are showing promise in treating chronic pain and related disorders. Recent research has shown that the marijuana-based medication dronabinol is effective in the management of neuropathy in multiple sclerosis. Similarly, another novel cannabidiol made by GW Pharmaceuticals has been found to help manage treatment-resistant epilepsy.

But while medical marijuana is showing potential in treating many medical problems -- including chronic pain conditions -- it will not have a significant impact on the rate of opioid addiction or overdoses.  

Media reports from outlets like Big Think erroneously associate the opioid crisis with chronic pain management and misinterpret recent studies on opioid overdose rates in states with legal medical cannabis.

In fact, chronic pain management is not a significant causal factor in the opioid crisis. The National Institute on Drug Abuse estimates that between 8 and 12 percent of people on long-term opioid therapy develop some form of opioid use disorder.  A Cochrane review put the number even lower – with less than 1% of chronic pain patients becoming addicted.

In other words, people who need opioid pain medication are rarely the ones who become addicted and reports of doctor-shopping pain patients are greatly exaggerated.  It is also clear from recent reports by the CDC that the prescribing of opioid pain medication has been dropping steadily since 2010 and that the main drivers of the opioid crisis are now heroin and illicit fentanyl.

Moreover, research only shows an association, not a causal relation, between legal medical cannabis and opioid overdose rates. A recent study from the University of New Mexico showed that people with chronic musculoskeletal pain preferentially used medical cannabis over opioid analgesics. But this result is only preliminary and small-scale, and is unrelated to opioid addiction or overdose.

A 2014 study in JAMA also found an association between medical marijuana laws and a decline in opioid overdose mortality rates. But the authors of the study were careful to note that “our findings apply to states that passed medical cannabis laws during the study period and the association between future laws and opioid analgesic overdose mortality may differ.”

Recent data from Colorado, which legalized medical cannabis in 2000, shows the number of newborns in the state addicted to opioids jumped 83 percent from 2010 to 2015, a result that suggests rising levels of opioid use. Similarly, significant increases in fatal overdoses involving opioids are emerging in Washington state, where medical marijuana has been legal since 1998.

Opioid overdoses are also increasing in other states that recently legalized cannabis, although the increase is most likely caused by heroin and illicit fentanyl, not opioid pain medication.

Medical cannabis has been mentioned as potentially helpful in treating opioid addiction. But a small new observational study from Washington State University concludes that cannabis use by patients in an addiction treatment program may actually strengthen the relationship between pain, depression and anxiety.

"For people who are using cannabis the most, they have a very strong relationship between pain and mood symptoms, and that's not necessarily the pattern you'd want to see," said lead researcher Marian Wilson, PhD, of the Washington State University College of Nursing. "You would hope, if cannabis is helpful, the more they use it the fewer symptoms they'd see."

About two-thirds of the 150 patients surveyed by Wilson said they had used marijuana in the past month.

"Some are admitting they use it just for recreation purposes, but a large number are saying they use it to help with pain, sleep, and their mood," Wilson said. "We don't have evidence with this study that cannabis is helping with those issues."

None of this is meant to downplay the potential of cannabis in pain management or other areas of medicine. Medical cannabis has long been recognized for its use in treating chemotherapy-induced nausea, in loss of appetite due to end-stage cancer, and in treating pain in disorders like multiple sclerosis. More research will help clarify what else medical cannabis may be able to do.

But the legalization of medical cannabis is not going to cure the opioid crisis. Instead, the excessive and uncritical enthusiasm for it in some recent media reports and research publications is creating unrealistic expectations. These expectations could be used to justify reductions in pain medications that are working, complicating the lives of people with intractable pain disorders for no good reason.

If medical cannabis works, let's use it. But let’s make sure we’re using it for the right reasons.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Tyranny and Tragedy of Pain Scales

Bu Janice Reynolds, Columnist

When the Joint Commission issued its first pain standards, they recommended that pain should be assessed on a regular basis and encouraged providers to ask patients a simple question: “Are you in pain?”

The Veterans Administration then had the bright idea to use a numerical pain scale to assess pain, as well as making pain the “5th Vital Sign.”  Other organizations followed like lemmings and eventually it was felt by most to be mandatory.  This was very wrong and damaged people in pain immensely.

Pain scales were never meant for this purpose. They originated and were validated in research projects, but wound up being incorporated into the assessment of pain.

Assessment requires many other questions besides the simple “Are you in pain?”

How does your pain feel now? What word would describe your pain? How long does it last? When does it occur? What makes it feel better or worse? And so on. 

The original question was supposed to lead to an actual assessment of pain and whether a person was having any. Then it was intended that the pain be addressed.  Pain scales are based on the premise that “pain is what the person says it is, existing when they say it does.”

Pain is subjective, it can never be objective.  The best use of a pain scale is before and after an intervention to ascertain whether the intervention was effective.

There are many different pain scales. The visual analog scale is a line where a patient selects a point on the line to represents where their pain is. Numerical rating scales typically rate pain on a scale of 1 to 10, while a vertical scale uses a 1 to 10 “thermometer” that has been shown to work best with older adults.

There are also face scales and behavioral scales -- like the one below -- which are used for young children or when adults are unable to communicate.

With the current madness over pain medication, an attempt is being made to make the scales more objective, so we have physicians and even patients designing their own scales. One very scary one designed by a woman with fibromyalgia (and of course loved by some providers) actually says “10 – Unspeakable pain. Bedridden and possibly delirious. Very few people will ever experience this level of pain.”

As a pain management nurse and someone living with pain, I emphatically call these made up scales quackery.

Unfortunately, pain is not always quantifiable, especially persistent pain.  Even a functional scale (based on how well you are able to function and do activities of daily living) is not always useful or believed. I remember telling a surgeon a patient rated her pain a 10 on a scale of 1 to 10.  His parting comment was, “If her pain was really 10/10, she would be dead.”

One of the results of using numerical rating scales is a further lack of response in acknowledging pain and treating it.  It has become a routine to ask if you are having pain and to put a number on it, but rarely does it result in further assessment, diagnostic tests, or actually doing something about the pain, even if you rated your pain a 10. 

The people asking the questions often have little idea about how to use a rating scale and become frustrated. I remember a nurse telling a developmentally challenged woman who could not use a scale that she needed to learn how. 

The last time I saw my neurologist, a nurse asked me to rate my pain. So I said, “Are you asking about my skull, my foot, or my hip?”  This of course flustered the nurse, who replied, “Which ever one the doctor is treating you for.” I told her, “He doesn’t treat any of my pain, I am seeing him for a seizure.” 

I eventually took mercy on her and gave her a “number” for my skull pain. But, like 99% of numbers reported in a screening, it was useless.

Pain terrorists (a phrase I use to describe opioiphobics and people biased against pain sufferers) are claiming pain scales have contributed to or even caused the “opioid addiction crisis.” I have also heard claims the scales were created by pharmaceutical companies to increase their sale of opioids and that they have allowed false claims of pain to proliferate.

When a group of U.S. senators submitted a letter to have questions about pain removed from Medicare quality of care surveys, they claimed too many doctors were prescribing opioids so that their hospitals would get good ratings. Sen. Susan Collins was quoted as saying “there is no objective diagnostic method that can validate or quantify pain” and that patients were not the best judge of how good their pain management is. This essentially denies that pain exists when a person says it does.

The bottom line is the use of pain scales to identify pain has been both a tyranny and a tragedy.  

It's a tyranny because it forces people to use a scale that was never designed for that purpose, which blames them for problems associated with using them, and allows pain terrorists even more ammunition for fear-mongering.

It’s a tragedy because it has contributed to the erosion of the art and science of pain management, and increased the damage to people suffering in pain.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on pain management and has co-authored several articles in peer reviewed medical journals.  Janice has lived with persistent post craniotomy pain since 2009. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

4 M’s That Can Help Lower Pain Levels

By Barby Ingle, Columnist

This month I am looking at the 4 M’s of pain management as part of my series on alternative pain treatments: magnets, massage, mindfulness and music.  

Once again, I know and understand that these therapies will not help everyone. And when they do offer some relief, it will be temporary and vary in nature. That’s no reason not to try them.

Mindfulness

I found mindfulness helpful and now use mindfulness techniques in my daily life to assist in pain management.

When I first started to look at mindfulness, I turned to Melissa Geraghty, PsyD, for input on the benefits and techniques. Dr. Geraghty serves on iPain’s medical advisory board and is a chronic pain patient herself.

“It’s human nature to pull away from pain, whether that pain is physical or emotional. We inherently try to avoid pain or distract ourselves from pain,” she told me.

“Maybe in the short term we feel avoiding or distracting ourselves helps, but this is not sustainable with chronic pain. The pain will always be there, so we can either continue to be stuck in the cycle of fighting it, or we can accept that we have chronic pain and figure out how to engage in our lives.”

Mindfulness is used to reduce stress, depression, anxiety and pain levels, and can also be used in drug addiction counseling. Clinical studies have documented both physical and mental health benefits of mindfulness for different medical conditions, as well as in healthy adults and children.

Mindfulness involves several meditation exercises designed to develop mindfulness skills. One method is to sit comfortably, close your eyes, and bring attention to either the sensations of breathing in one’s nostrils or to the movements of the abdomen when breathing in and out. When engaged in this practice, the mind will often run off to other thoughts and associations. When this happens, one passively notices that the mind has wandered, and in an accepting, non-judgmental way, you return to focus on breathing.

Other meditation exercises to develop mindfulness include body-scan meditation, where attention is directed at various areas of the body and body sensations. You can also focus on sounds, thoughts, feelings and actions that are going on around you. A mindfulness session is typically done in short periods of about 10 minutes. The more you practice, the easier it is to focus your attention and breathing.

I recently had a mindfulness session with a therapist as part of a documentary I was filming. I noticed that having someone guide me through a session, as opposed to doing it on my own, was very beneficial. I got to focus on positive thinking, letting go of negatives that happen in life, and living life in the now.

“Mindfulness practice allows people with chronic pain to participate in the moment instead of watching life pass you by. Life may not flow in the way you expected it to before chronic pain, but living in an endless cycle of psychological misery isn’t living at all,” says Dr. Geraghty.

Massage Therapy

Massage therapy is another treatment that I use. My husband and I purchased a massage table back in 2005 at the suggestion of my physical therapist. I can do exercises on it or have my husband give me massages as needed. This is especially good for migraines, headaches and overall blood flow in my body.

There is conflicting information on whether massage helps relieve pain and others symptoms associated with nerve pain diseases. Much of the scientific studies show beneficial short term effects, and I agree with them based on my own experiences.

Not only do I find massage therapy helpful with my pain levels, it also helps me relax and let go of stress. My massage therapist told me that even a single massage session has been shown to significantly lower heart rate, cortisol and insulin levels --- which  reduce stress.

Massage can also improve posture, which helps reinforce healthy movement. Other benefits of massage are better breathing and training the body how to relax. Clinical studies have shown that massage may be useful for chronic low-back pain, neck pain and osteoarthritis of the knee.

Magnet Therapy

Magnet therapy dates back at least 2,000 years, according to New York University Langone Medical Center. Healers in Europe and Asia used magnets to treat many different ailments, believing that the magnets can draw disease from the body.

Typically, therapeutic magnets are integrated into bracelets, rings, shoe inserts, clothing and even mattresses. Despite a lack of scientific evidence that magnet therapy works, an estimated $1 billion a year is spent on the sale of therapeutic magnets worldwide. Makers of these products claim they help increase blood flow to areas of the body where the magnet is worn, which brings in more oxygen and helps tissues heal faster. While larger studies have shown little to no therapeutic value in magnets, some smaller studies have found some benefit.

Pain patient Elizabeth Kandu is a believer in magnet therapy, although she’s not sure how it works.

“Who really knows if it’s a placebo effect or really works in everyone,” she says. “For me, without at least the metal to skin in 2 or 3 places, I am an electric nightmare.”

Elizabeth is right that there may be some placebo effect in play, but if magnets provide some relief they may be worth a try. It will be interesting to hear from PNN readers who have tried magnets and if any therapeutic value was found.

Music Therapy

I have been using music to excite my soul since childhood. I now also use it to address physical, emotional, cognitive and social needs that come with living in pain.

According to Warrior Music Foundation’s Michael Caimona, music provides sensory stimulation, stirs emotional responses, facilitates social interaction and communication, and provides diversion from inactivity.  Music also helps us get through sad times and helps us heal from bad times.

I’ve found music to be an effective tool in reducing pain levels and anxiety, and it helps stimulate the brain. I have even had surgeons put on music during my procedures. Although I cannot hear it consciously under anesthesia, I am able to hear it subconsciously and believe in the positivity of it. I also use music during infusion therapy and on moderate pain days.

Another study I found reported that children who listened to music while having an IV needle inserted into their arms showed less distress and felt less pain than the children who did not listen to music. Research also shows that music therapy helps patients become more engaged in their treatment and physical therapy.

There are two different forms of music therapy, active and receptive. The patient can actively create music with instruments or by singing. In receptive therapy, the patient is more relaxed and is listening or participating in other activates while the music is being played.

I hope that spotlighting these alternative pain treatments will help readers understand that there are many forms of therapy, and it’s up to each patient to find what works for them. Many times as patients we feel we have tried everything. But until your pain is at a constant low number on the 1-10 pain scale or a zero, I encourage you to keep discussing options and trying new treatments.

The goal is to get the best living you can out of each day. I look forward to hearing what has and hasn’t worked for you.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the  . She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Let's Restore Reason and Sanity to Opioid Prescribing

By Sandie Hamilton, Guest Columnist

I am 62 years old and a full time worker employed in the social services area. I am a mother, grandmother, registered voter and taxpayer. I support this country and everything she stands for. I believe in our Constitution and in our Bill of Rights, which contain the basis for my point today: the pursuit of happiness.

I have been diagnosed with degenerative arthritis of the spine. The pain it causes makes doing my job, sitting through a movie or Sunday service, and driving in a car nearly impossible. I cannot sit for more than 20 minutes at a time, nor stand for prolonged periods of time. If it weren’t for my prescribed opioids, I would not be able to sit at this computer long enough to write this.

Opioid pain medication was not the first thing my doctor prescribed. It was the last. I did spinal epidurals, nerve blocks, chiropractic manipulation, physical therapy, ultra-heat therapy, deep tissue massage, and yoga (which sent me back to the doctor). I also used topical creams, ointments, essential oils, lots of prayer, and of course NSAIDs -- until peptic ulcers led to stomach bleeds and vomiting.

Then my doctor put me on a low dose of opioids. I am now able to continue working, sit here and write this column. And all the other little things most folks take for granted.

SANDIE HAMILTON

My dose could be a little higher and probably needs to be adjusted, but I don’t dare ask my doctor. He told me once that “they” have made him feel like a criminal for what he does do. It’s a shame that I can’t talk to him and he is afraid to do more to help me because of this crazy manufactured opioid crisis. Not to say prescribing hadn’t gotten too liberal, maybe it had. But that was before I needed help.

I seriously believe the liberal prescribing days are over. Way over. Where I live most people aren’t getting anything, unless they’re dying. And that is excessive. Because of opioids I am a productive taxpaying citizen, not a housebound miserable invalid drawing my little disability check and getting free medical care.

Because of opioids, I am not a burden to the state. I am able to exercise my right to the pursuit of happiness, which for me means getting some relief from the constant pain. More could be done, but I am afraid to ask and my doctor is afraid to offer. That is wrong.

Something within reason needs to be done for the millions of pain patients who live in fear of losing or who have already lost their one lifeline to normal living -- a prescribed medication that works. But that’s not possible with all the tightened opioid guidelines and the number of drug overdoses rising.

Hopeless people unable to accept their pain have committed suicide. And I understand why. Others have turned to the black market and are trying things coming in from Mexico that can kill them. Of course, a lot of people choose to do drugs to get high, and it is their misuse and abuse of our medication that has caused a lot of the issues and overdosing.

We are being called addicts and drug seekers, and lumped right in there with the thrill seekers, which we aren’t. We are people with varying conditions that cause pain. Chronic untreated pain kills people too. It has been documented the effect it has on the brain, the stress on your heart, and the drain on your emotions.

Did people take advantage of opioids and turn from medicinal to recreational use? Yes they did. But the overprescribing has stopped. In some hospitals, you can’t even get opioids now if you’re having surgery! That’s ridiculous.

If we are diagnosed by a physician who wants us treated with opioids, we should be able to get them in whatever degree we need them. People are different. What works well for one may work differently for another, but the doctor should be able to determine what his patient needs and prescribe accordingly.

Please stop this war on pain patients. I want to be able to talk to my doctor and not live in fear that what is working for me today might be taken away tomorrow. There should be pain management specialists, pain sufferers and patient advocates on government commissions that deal with pain. How can you possibly decide what we need or don’t need if you aren’t talking to us?

Please hear us. Restore some reason and sanity to prescribing regulations and give us back the doctor-patient relationship.

Sandie Hamilton lives in Oklahoma.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

I Would Not Be Alive Without Dr. Tennant

(Editor’s note: As PNN has reported, last week the DEA raided the home and offices of Dr. Forest Tennant, a prominent pain physician in California.  The DEA search warrant alleges that Dr. Tennant is part of a “drug trafficking organization” and prescribes excessive amounts of opioid pain medication. Dr. Tennant treats about 120 patients with intractable chronic pain, including many from out-of-state who can’t get effective treatment elsewhere. Kimberley Comfort is one of them.)  

By Kimberley Comfort, Guest Columnist

My Dad searched the country for help for me, as I have spent my life since September 2010 in 24/7 intractable pain. I ended up having two major surgeries trying to help. None helped with the severe intractable pain.

My Dad finally found Dr. Tennant and flew me on three plane seats, while he sat in another row, so I could remain laying down to reach California in January 2014.

Dr. Tennant saw me for over 12 hours in two hour sections in the morning and afternoon. He was essentially a charity. It was 12 hours of full one-on-one attention for $100. He did extensive examinations, blood tests, a genetic test, and trying out different very mild exercises once he diagnosed my adhesive arachnoiditis. He explained some treatments that might help if I ever had my spinal cord stimulator removed.

KIMBERLEY COMFORT

Dr. Tennant did prescribe me some additional opioid medication, while awaiting the results from genetic testing, along with vitamins, minerals, anti-inflammatory drugs, and a water reduction pill that mainly concentrated on the spine.

He agreed that I try a drug combination from a doctor in France that my Dad had researched and spoken with. Opioids were Dr. Tennant's last choice and high dose opioids were for those who metabolized the opioids much too fast.

Dr. Tennant thought I should return monthly, but we explained that the flight was just way too much for me to handle. So Dr. Tennant explained that palliative care was all that remained. He wrote letters to my pharmacy in Florida explaining my disease and why I was requiring such high amounts of opioids. He wrote my primary care provider and explained everything to him, offering to help in any way he could.

Dr. Tennant had recommended injectable Dilaudid, but my doctor would not give me that. Instead, it took him another 15 months and 4 different opioids to get me to a point where I was not in intractable pain 24/7.

I would not be alive today if it were not for Dr. Tennant. There is no way I could or would survive the pain I have without my high dosage of opioids. The genetic test showed I was a very fast metabolizer of opioids.

I have suffered with pain since I was a teenager.  Even back then, I was given opioids with Valium. My primary care provider still gives them to me today. If a doctor told me my liver was dying and they needed to cut back on my opioids, my answer would be the same now at age 52, as it was at 16.  I would much prefer a shortened life with manageable pain than to live a long torturous life with intractable pain. Frankly, I believe my heart would give out if I faced intractable pain again 24/7.

The opioid doses that the CDC recommends are far less then I have been on since the day adhesive arachnoiditis hit me like a Mack truck.

As for the money Dr. Tennant received from Insys Therapeutics, it is very little compared to some doctors. Doctors often get paid for speaking, get free lunches for the staff and themselves, and airfare to conferences where they will speak. Dr. Tennant is far from the only doctor to do this.

One can go online to ProPublica’s Dollars for Docs and see how much your internist, orthopedic surgeon, neurologist, etc. got from pharmaceutical and medical device companies. It shows that from 2013 to 2015, Dr. Tennant received $127,000.

Compare that to the highest paid doctor. Dr. Roger Jackson, an orthopedic spine surgeon, was paid $54,100,000 during that same time period.

DR. FOREST TENNANT

Dr. Tennant basically works for nothing. You should see how hard and long he works, speaks to educate doctors, and does research to help those of us who would very likely be dead if not for him. To me, Dr. Tennant is a saint!

The DEA should be going to Dr. Tennant, not to raid his offices, but to learn from him. My understanding of U.S. medicine is that a doctor had to be a Doctor of Public Health (DPH), as Dr. Tennant is, to have prescribed pain medication back in the 1960’s. Dr. Tennant was sent the worst of the worst pain patients back then, when “learning to live with it” was impossible for severely injured patients. Pain patients from all walks of life were referred to him for help that the other doctors could not give.

Dr. Tennant is far more educated than most any doctor left today, except perhaps other DPH doctors who have kept up with the times. In my Dad’s research, we found no other doctor specializing in intractable pain. Dr. Tennant has more than 35 years of prescribing pain medication under his belt. He knows what works and what doesn’t. He is the doctor the DEA and the Department of Justice should be calling as an expert witness in the treatment of pain, not going after.

This is nothing more than a smear campaign to try to ruin Dr. Tennant. All these government agencies, Physicians for Responsible Opioid Prescribing (PROP), and the news media have mixed up illicit drug use with needed intractable and chronic pain relief. They are mixing apples with oranges. Pain patients do NOT get a high from opioids. If we are lucky, we get some relief. Some get more relief than others and can go back to living a fairly normal life with opioids.

The crackdown on pain medication isn’t going to stop an addict from looking for that next high. Overdoses will continue even if the DEA, FDA, CDC and DOJ totally eliminate opioid medication. People will find something else to get high with and we will still have overdoses.

The intractable pain patient who has followed the law and their prescription directions will never get high and will, if they’re lucky, be able to have some semblance of a life. Take away their opioid medication and you will murder these people by forcing them to take their own life or waiting until their body fails from the extreme stress of the pain. Our blood will be forever on your hands.

You are trying so hard to take down any doctor who follows the Hippocratic Oath they took to render care to those who need it. You are too ignorant to not recognize the bad science used by the greedy doctors trying to get more money for rehabilitating illicit drug users. You fail to listen to the experts in the treatment of pain and instead only care about the treatment of addicts.

We, the intractable and chronic pain patients, need and depend on the assistance of the few remaining doctors willing to help. Let Dr. Tennant continue to be the highly educated pain doctor he is. Let him continue to help us stay alive and be with our loved ones.

We all are suffering, some worse than others. Without Dr. Tennant and those good doctors you have already tossed to the curb or worse, you will be responsible for our screams of pain and our forced intentional suicides. It will be murder by proxy.

Kimberly Comfort lives in Florida.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

The FDA Got it Wrong on Stem Cells

By A. Rahman Ford, Columnist

In August, FDA Commissioner Scott Gottlieb, MD, signaled that his agency would move in the direction of enhanced regulation of stem cell therapies.  He said the action was justified because of “unscrupulous actors” who deceive patients with what he described as “dangerously dubious products.” 

Although the FDA referred to its prospective actions benignly as “enforcement” and “protection,” the likely impact seemed obvious – safe and effective therapies that have been healing patients for years would become less available and more expensive. 

Those concerns have now been made real.

This week the FDA released its final guidance on regenerative medicine and stem cell therapy, an approach that relies extensively on more regulation.

“We’re at the beginning of a paradigm change in medicine with the promise of being able to facilitate regeneration of parts of the human body, where cells and tissues can be engineered to grow healthy, functional organs to replace diseased ones; new genes can be introduced into the body to combat disease; and adult stem cells can generate replacements for cells that are lost to injury or disease,” Gottlieb said in a statement.

“We’re adopting a risk-based and science-based approach that builds upon existing regulations to support innovative product development while clarifying the FDA’s authorities and enforcement priorities. This will protect patients from products that pose potential significant risks, while accelerating access to safe and effective new therapies.”

Unfortunately, from both a patient and policy perspective, the FDA’s guidance is distinctly retrograde, drifting backward against a cosmic tide of scientific discovery that should be propelling post-modern medicine forward.  Not only are the FDA’s actions potentially detrimental to the health of Americans who suffer from chronic illnesses that could be treated or even cured by stem cells, they could cripple the entrepreneurship, ingenuity and cost-effectiveness of regenerative medicine. 

For the next 36 months, Gottlieb says FDA will adopt a “risk-based approach” in enforcement of the new rules, “taking into account how products are being administered as well as the diseases and conditions for which they are being used.”  While this grace period seems reasonable, the final guidance makes clear that the FDA will prioritize the oversight of clinics that deliver stem cells via intravenous infusion, in part because “use of these unapproved products may cause users to delay or discontinue medical treatments that have been found safe and effective.”

But intravenous stem cell administration has been safely used to treat patients suffering from painful autoimmune diseases like multiple sclerosis.  I have personally had intravenous stem cell therapy, and found it to be both safe and effective. 

‘Minimal Manipulation’ Test Tough to Pass

While well intended, the FDA’s guidance suffers from unduly restrictive definitions of “minimally manipulated” and “homologous use” -- key standards that will determine the availability of future stem cell therapies. 

Stated simply, stem cells that are “minimally manipulated” will not need to be approved by the FDA via clinical trial.  But that’s a tough test to pass and would seem to rule out mesenchymal stem cells, which help reduce inflammation in orthopedic and autoimmune conditions, conditions that cause unbearable pain for countless Americans.  The FDA’s conception of “minimally manipulated” is simply too limited.

The “homologous use” definition is likewise flawed.  Even if a stem cell product passes the “minimally manipulated” test, the cells used must “perform one or more of the same basic functions in the recipient as the cells or tissues performed in the donor.”  Under this definition, blood stem cells can be transplanted into a person with a disorder affecting their blood system, but cannot be used to repair damaged tissue, as in the case of a child’s cerebral palsy or a wounded veteran’s traumatic brain injury.

However, in a cruel twist, adipose (fatty) tissue used for cosmetic procedures like breast reconstruction and augmentation do satisfy the “homologous use” test and do not require a clinical trial.

Essentially, under these guidelines, the FDA strong-arms the child with cerebral palsy and the war veteran to the back of the medical bus, while giving breast augmentation the VIP treatment and ushering it to the front.  Sorry FDA, big breasts are not more important than curing diseases. 

FDA Should Respect Privacy Rights

Additionally, as I have written about previously, Americans have a constitutionally-protected privacy right in their own cells.  The FDA’s new rules completely ignore this right.  It is a basic right that emanates from established Supreme Court case law and fundamental principles of personal liberty and autonomy, and protections against undue intrusions upon bodily integrity. 

One’s body and one’s health are indeed intimate and personal matters that federal agencies must respect.  Instead of being overly preoccupied with a cell’s “same basic function,” the FDA needs to be concerned with a person’s “fundamental basic right” to use their own cells as they see fit.

In fact, one could easily argue that sufficient government regulation and patient protections already exist in federal and state law, as well as medical ethics boards.  The truth is that additional federal regulations are unnecessary, unduly burdensome, and infringe upon the sanctity of the physician-patient relationship and our right to control our own bodies. 

Commissioner Gottlieb’s declaration that patient safety is of paramount concern is a pleasure to hear.  However, in practice, the FDA’s regulatory efforts will likely serve to retard medical innovation and force Americans to travel abroad for life-saving stem cell therapies. They also preserve a “clinical trial” approach to treatment that, when applied to stem cells, has proven itself to be unduly burdensome, unreasonably slow, and unbelievably expensive.

Ultimately, what is abundantly clear is that the American people have spoken.  Their voices are filled with pain and they must be heard.  Retrograde stem cell policy is inimical to curing disease and is an affront to the elimination of pain. 

A. Rahman Ford, PhD, is a freelance researcher and writer on the issues of politics, policy and health. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor in Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Fed Assault on Pain Patients Continues

By Jane Babin, Guest Columnist

The alphabet soup of federal agencies continues their full-frontal assault on pain patients and the opioid “epidemic.”

On Tuesday, the DEA raided the offices and home of Dr. Forest Tennant, an outspoken critic of federal efforts to regulate opioid prescribing.

Last week the DEA finalized plans for another 20 percent cut in the supply of opioid medication, apparently acting at the behest of 16 U.S. senators.

And this week FDA commissioner Scott Gottlieb declared a public health advisory over the increasing use of the herbal supplement kratom, telling people they should use FDA-approved medications instead. 

Well, Dr. Gottlieb, people don’t have access to the FDA-approved pain medications they need and it’s getting worse each day.  Fewer people might look for alternatives for their pain and/or addiction if they were treated adequately, with the dignity and respect they deserve, and without mistrust, denigration or a pound of flesh.   

I’ve never bought into the narrative that the opioid “epidemic” was caused by prescription drugs or that the inevitable consequence of opioid pain treatment is addiction. 

The problems are far too complex to assign blame to any one factor, person or group, and the simplistic solution of cutting opioid prescriptions flies in the face of not only my own experiences with opioids, but also that of millions of Americans with acute or chronic pain, and scores of respected pain specialists.

I was incredulous when the CDC proposed “voluntary” opioid prescribing guidelines in the dark, with a secret panel of wholly biased “experts,” most never having treated a patient for pain and perhaps never even being in the same room with one.  I was even more outraged when it assembled a new CDC-friendly review committee and utilized a puppet scientific advisory committee to rubber stamp their approval.  

After reports of fentanyl-related deaths appeared in the media, my reaction was two-fold: 

1. This explains the surprising surge in deaths of regular heroin users who are usually adept at managing their doses to avoid overdosing.
2. This couldn’t solely be due to the diversion of prescription fentanyl, because it’s not easy to steal large quantities of transdermal patches and redistribute the fentanyl to heroin and pills. 

Then, when carfentanil and other fentanyl analogues emerged, I thought the DEA, CDC and FDA would have to acknowledge that the “epidemic” wasn’t a prescription drug epidemic, because carfentanil isn’t prescribed to humans and is very tightly controlled.  I was wrong.

What is even more concerning is their dogged refusal to consider the complexities of opioid addiction and alternative explanations for many opioid overdoses.  If a person dies with a combination of alcohol, heroin, benzos, meth, and a trace of the Vicodin they took three days ago in their system, does that make it a prescription opioid death? 

Yes, according to CDC analyses.

Seeking Answers

I wanted to know how the CDC's distinguishes between a prescription opioid death and those caused by  incorrect coroner determinations, polypharmacy, counterfeit drugs, history of drug abuse, and even deaths from severe pain. 

So I wrote to Deborah Dowell, MD, co-author of the CDC guideline and lead author of a recent article published in JAMA, which analyzed underlying factors in drug overdose deaths. 

In that paper, Dowell acknowledges that “although increased heroin use and risk taking likely contribute, available data suggest contamination of the heroin supply with illicitly manufactured fentanyl as the overwhelming driver of the recent increases in opioid related overdose deaths.”

Which made me wonder what data was “available” and why they would need to qualify their conclusions.

deborah dowell, md

“There are limited data about the effectiveness of interventions to prevent overdoses related to illicitly manufactured fentanyl,” Dowell explained. “However, interventions that reduce opioid use disorder and opioid overdoses are likely to reduce overdoses related to illicitly manufactured fentanyl. Unnecessary exposure to prescription opioids must be reduced to prevent development of opioid use disorder in the first place.”

Ah ha! So fentanyl is bad and they aren’t sure if they can save people from overdosing on fentanyl, so they want to target prescription opioids instead. Because, of course, all pain patients who take opioids inevitably develop opioid use disorder (at least they do after the American Psychiatric Association rewrote the definition of addiction.  

I emailed Dowell and asked the following questions about her analysis of opioid deaths:

• How many different drugs did the decedents have in their bodies at death? What was the numerical range and average number? If other drugs were found, what were they?
• How many had a verifiable diagnosis or history of addiction? How many had a history of receiving opioid prescriptions for pain and for how long?
• Do prescription records validate a conclusion that the drug causing or contributing to death was a prescribed opioid?  
• Were all causes of death considered, or was a death concurrent with detection of opioids presumed to be an overdose?
• In how many cases were police or coroner's findings considered and found consistent with the cause of death reported on the death certificate?

The response I received was astonishing.  Less than 8 hours after emailing Dowell, I received a message from CDC’s Office of General Counsel.  I had struck a nerve! They saw I was a lawyer and thought I was preparing for litigation.

After clearing my questions with CDC’s legal team, Dowell replied a week later.  Her response should send a shiver down the spine of any pain patient who has been denied opioids, titrated down, or dismissed by his or her physician: 

“The reality is that many of the answers to these highly specific and technical questions cannot be answered in a definitive manner based on available data.” 

The bottom line is CDC does not have a grip on what’s really happening. CDC is targeting pain patients who are increasingly tortured by a medical profession scared silly by investigations and law enforcement. Yet they press on, with very little effect, continuing to blame prescription opioids and pain patients as the root cause of the opioid “epidemic” they aren’t responsible for.

The failure of the federal government’s efforts, particularly since the CDC guideline was issued, creates a justification to double down – no opioids for chronic pain and fewer opioids for acute pain -- all because pain never killed anyone and so there is no harm in forcing patients to suck it up.

The reality is that they can’t fix a problem they won’t acknowledge or attempt to understand, and they don’t have the data to understand it.  They can’t manipulate data to support an agenda and then expect solutions based on faulty conclusions to ever reach a desired end. 

Until they acknowledge what the real problems are, they will never solve them.

Jane Babin, PhD, is a molecular biologist and a biotechnology patent attorney in southern California. Jane has worked as a consultant for the American Kratom Association, a pro-kratom consumer group.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Death of Pain Management

By Janice Reynolds, Columnist

The art and science of pain management is more than just opioids.  It is knowing what pain is and how pain works, the harmful effects of pain, different reasons for pain, how individuals react differently to pain, which medications may work and how they work, what non-pharmacological interventions may be appropriate, the difference between “acute” and “chronic” pain, understanding that guidelines are not written in stone, and the importance of listening to the patient and treating the whole patient.

While many physicians, nurses and pharmacists may not know all of this, they should be willing to research it or ask for help from someone who is knowledgeable.  Above all, it requires compassion, belief and faith in the patient.  It’s complicated, but that is why I call it an art and a science.

There have always been those who are bigoted against people in pain, do not believe pain is all that important, and that people need to gut it out. They’d rather 1,000 people suffer in pain than be fooled by one. They see pain management as a money-making endeavor.

Others take the values of beneficence (doing good), non-maleficence (not doing harm), veracity (truth telling), and equable justice (all are treated fairly) seriously, and don’t try to warp these ethical values to support their own beliefs.

Unfortunately, the tide has turned against pain sufferers and pain management providers, and they are being overwhelmed with falsifications and even hate. Some would cite the so-called “opioid epidemic” as the cause, and while it has certainly acerbated the problem, the seeds were planted long ago.

What this “crisis” has done is escalate the terrorism of the DEA by driving providers out of pain management or punishing those who still treat pain. There has been a lack of due process, with providers found guilty until they can prove themselves innocent, damned by innuendo, and with no thought or care for the collateral damage to their patients.

The media and anti-opioid zealots have also made claims that pain management experts are all tools of the pharmaceutical industry and anyone who advocates for appropriate pain management is spreading lies.

The crisis in pain management can be traced back, in part, to the Joint Commission’s accreditation standards for pain.  Healthcare organizations were first held accountable to them in 2001.  My friend, Dr. June Dahl (a professor of pharmacology) and Dr. Patricia Berry (a nurse) wrote the initial standards.  Our belief was these standards would “make pain visible” and pain would no longer be ignored.

The standards essentially said that healthcare organizations should have a plan to assess the presence of pain, that pain should be treated, and that providers should be educated on pain and pain management. This turned out to be wishful thinking.  Negative comments we heard included variations of “If you ask them about pain they will have it” or “People will only exaggerate their pain.” My favorite one (asked by an emergency room doctor) was “Do you really think this pain thing is all that important?”

Dr. Andrew Kolodny and Physicians for Responsible Opioid Prescribing (PROP) have also had a huge impact on pain management. Seldom mentioned is the fact that PROP is a small group with only a handful of practicing physicians. Many, like Kolodny, have links to addiction treatment centers.

When the FDA wouldn’t go along with a PROP petition to change opioid warning labels, PROP found a home at the Centers for Disease Control and Prevention, where they helped draft the CDC’s opioid prescribing guideline. The guideline has severely damaged pain management by forcing providers to essentially ignore pain and commit malpractice. PROP has done more to murder pain management than any other entity.

Another large contributor to the death of pain management is the use of McCarthyism to spread fear and innuendo.  Doctors are afraid to provide appropriate pain management either because of the CDC guideline or a realistic fear of the DEA.  Providers are abandoning pain management or leaving practices entirely. Nor can they be faulted, as there is little support for them by politicians, the government or the media.  Even professional medical organizations, such as the American Pain Society, American Society of Anesthesiologists and American Academy of Neurology, have abandoned them.

Now we are seeing a bastardization of pain education, as well as a debasing of pain management itself. Education in medical schools and continuing education for providers should center on pain syndromes, pharmaceutical interventions, non-pharmaceutical therapy, and the consequences of poorly managed pain.  It should be evidence based, as well as ethical, and should not include the CDC guideline, which is neither. It should not just focus on addiction or the evils of opioids. 

There are now efforts to standardize pain management through the development of “best practices.”  President Trump’s opioid commission, the VA, Medicare, and other government agencies are creating them with input from addiction treatment advocates and insurance payers, without input from pain management experts or people in pain.

Will the art and science of pain management survive these assaults? I certainly want it to. But it will be difficult to re-educate providers and bring back into practice those who have been persecuted by the DEA and the media.

The narrative needs to change. We need to refocus on the harmful effects of inadequate pain management, the maltreatment of people in pain, and what forces are behind this butchery of adequate pain management.

Pain management, according to the World Health Organization, is a human right.  What kind of world and country do we live in when this right is blatantly ignored and the health of many placed in jeopardy by the death of pain management?  

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on pain management, and is co-author of several articles in peer reviewed medical journals. Janice has lived with persistent post craniotomy pain since 2009. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Managing Emotions While Living with Chronic Pain

By Barby Ingle, Columnist

Before navigating through the minefield of the healthcare system, we need to get our own lives in order first.

It is important to learn the tools to manage chronic pain in a biological, psychological, social and spiritual approach. This can be quite tricky to do, if you don’t put effort into each area.

The one area most skipped over is the psychological challenge that comes with living in chronic pain. One of the things that negatively affected my healthcare was not having my emotions under control when going into a doctor’s office. I would go in expecting them to fix me and answer in broad sweeping terms that did not help them help me. I would typically cry, because I was in so much pain and trying to get someone else to understand was quite a challenge.

There were five major areas psychologically that I worked on: managing my conditions, avoiding peer pressure, figuring out tools that I was comfortable with, respecting the roles of everyone involved in my care, and setting expectations with my family and friends.

Once I became my own best advocate and learned to present my symptoms in ways that helped them understand, I finally started down the path to a team approach to managing my pain.

The first step was getting my emotions under control and taking responsibility for what happens between appointments. That meant making sure that I was organized, learned about my diseases and treatment options, and understood how my insurance worked. Getting organized really helped me get my emotions under control, let go of anxieties, and focus on maximizing my care and energy.

I also learned each provider has their own way of treating pain, and if that provider was not on board with me, I’d find a new one who was willing and able to help me accomplish my goals.

Avoid Peer Pressure

You may face some peer pressure from others in the pain community to try whatever they are doing. Remember to research and only do what you are ready to do for yourself. If it’s not right for you, then it’s not right for you. The stress of allowing others to pressure you into trying a treatment that you are not comfortable with can create a bad situation for you.

Don’t be misguided by the pressure to fit in with others who have the same disease as you. Be sure to stand up for yourself and the care you deserve.

Take Responsibility

We are taught from childhood that doctors fix sick people. Providers and parents make decisions for us about our medications and treatments. But as we age, it is important to learn that we are responsible for our own care, and to think through and develop our own solutions. This is an essential life skill for everyone, but when you are chronically ill it is even more important to develop.

Respect that pain takes a toll on us physically and emotionally, and that we must devote time, effort and energy to improve our living situation and be as mentally healthy as possible. So many times, I wanted to scream or have a tantrum. Can’t they hear me? Can’t they help me? Can’t they do something for me?

Finding more positive ways to say what I was going through and productive ways to communicate helped me get the best care possible in the worst of situations. No one helped me when I let my negative emotions lead me. I have learned to respect myself and others to get the care I need, know when to walk away, and when to find a better way.

Set Expectations Early

Most of my family understood that I was living with chronic pain and that it was not by choice. But not all of my husband’s family understood, and took the word of a nurse who said that I was acting up, looking for attention and nothing was wrong with me. Over the years most of them have come around, after I learned to be patient and stay consistent in my drive and determination.

I have only had to cut a few people out of my life and most of that happened because I was unable to set expectations. Now it is something I have learned to do at the start of any relationship. There is so much less frustration when I have to say sorry I can’t make it because of a pain flare or seizure. They know I want to be there, there just are times that my body doesn’t allow it.

Having chronic pain will challenge you in ways that you never imagined. Preparing for daily activities and pain flares becomes a must. So does searching for small ways to boost your own self-confidence.

Managing the emotional side of chronic pain can be done -- it just takes understanding, effort, and learning to choose your battles.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Panic! At the Toilet: Dealing With a Panic Attack

By Crystal Lindell, Columnist

When I read the notes from the paramedics, I couldn’t help but laugh.

“Pt. was sitting on toilet. Began to hyperventilate,” they wrote.

I finally found a title for my future autobiography! Hey, it’s my panic attack. I can make jokes if I want to.

The whole thing happened about a week ago and, as you can tell by the notes from the EMTs, it happened while I was going to the bathroom. There aren’t a lot of good places to have a panic attack, but I can tell you from experience that the toilet is an especially bad one.

Nothing brought it on. I had literally just woken up. And I was in the middle of a text conversation with my best friend about how insanely expensive humidifiers are when it hit.

It’s not as though I was contemplating the meaning of life or freaking out about the idea of being single forever, or even thinking about our current president any more than usual. I was literally just trying to find the best way to wake up without dry sinuses.

For the lucky ones out there who aren’t aware of what happens during a panic attack, let me explain.

The first thing to know is that the whole thing is scary as hell. If you don’t know what’s happening, you might think you’re dying. As in, this is it. This is how it all ends. On the toilet. Like Elvis.

It starts with this weird urge to hyperventilate. For no reason. Literally. No. Reason. That, in turn, causes chaos.

I started screaming. Then, sweat suddenly drenched my entire body. And soon after that, things started to shut down, as my body rushed blood to the most important areas, like my heart, assuming extremities were expendable. So, my feet and then my calves went numb and then they started cramping. My hands curled under and stopped functioning. And eventually my tongue also went numb.  

Saying it’s really effing scary is an understatement. 

Thankfully, my brothers were both home and heard me screaming. When they came to check on me, I mumbled with my non-functioning tongue that I needed them to call 911. I live two doors down from the fire department, so the paramedics got to my house pretty quickly. That was helpful. 

And, I have to say, they were insanely good at dealing with the situation. 

One of them rushed in and knelt down in front of me, grabbed my hands, looked me in the eye and said, “Crystal, what’s happening to you is completely normal. I need you to try to breathe with me.” And then he guided my breaths while another paramedic got some oxygen ready. Once they put that on me, I was able to regain function in my limbs again. My hands slowly started to uncurl and I was able to kind of calm down. 

That’s about when I also regained the wherewithal to really understand exactly what was happening. Three young paramedic guys, in my bathroom, helping me breathe, while I sat on the toilet, in a T-shirt and hot pink underwear wrapped around my ankles. 

I’ve had better moments. 

I declined to go the hospital mostly because I knew that I would be ok after I calmed down. But it’s likely I had such a severe reaction because I was dehydrated, and IV fluids probably wouldn’t have hurt. Instead, I just drank some Gatorade.

Afterward, I was completely drained of energy and ended sleeping the rest of the day. I can tell you that I also have spent every day since genuinely concerned that I would have another panic attack any time I went to the bathroom. So that’s fun. 

And honestly, I have been struggling to process the emotional trauma of losing control of my body. Just writing this column, and remembering everything that happened, has been enough to make my heart race with fear. But I am seeing my psychiatrist in a couple days to talk about future coping strategies, so hopefully that will help.

I know this is the “Pain" News Network, and I struggled with whether I should write about a panic attack in this space. But panic attacks are really painful in lots of ways, and many people living with chronic pain also deal with anxiety. 

And I while I had one 7 years ago, I didn’t actually know that it had been a panic attack until I heard one of favorite YouTuber beauty bloggers describe something similar happening to her. I was like, “Oh, wow. That’s exactly what happened to me!”

And I can tell you that the most important thing to realize during a panic attack is that it is just that: a panic attack. Because a stroke or heart attack seem pretty similar. And thinking you’re going to die doesn’t help calm you down. So maybe this article will help someone else who unexpectedly finds themselves hyperventilating on the toilet someday. If nothing else, it’s a good reason to clean your bathroom. 

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: Help Us Help America

By Carol Levy, Columnist

I had a friend who was diagnosed with lung cancer. We were all afraid for her. Not only because we feared for her life, but because of all the horrors we hear surrounding treatment for cancer.

She had surgery and a part of one lung was removed. When I spoke with her after surgery, I hesitantly flirted around the edges of the question: chemotherapy, radiation, how awful will it be for you?

My worries were unwarranted. Her answer was completely unexpected.

"I don't need anything else,” was her reply. “My doctor said, ‘You had cancer. Now you don't.’”

Wow. What strides they have made against this horrendous disease.

There is no question how feared cancer is, how dreadful the disease is and the possible repercussions -- from the cancer itself or as a result of the terrible treatments used against it.

The federal government throws huge amounts of money at cancer research and new treatments. As they must. Cancer scares everyone. It must be eradicated, if at all possible.

Cancer also costs the economy. Treating cancer in the United States cost nearly $125 billion in 2010 and is projected to reach $156 billion in 2020. The government would be accused of malpractice if they ignored this life and money devouring monster. And they don't. That is one reason my friend had it and then she didn't.

 What is the economic impact of pain? Between $261 and $300 billion annually in healthcare costs alone. Add in lost works days and productivity, and the tab reaches $635 billion.

Estimates vary, but according to the American Academy of Pain Medicine, 76.2 million Americans have chronic pain, compared to 20.8 million with diabetes, 18.7 million with coronary heart disease and stroke, and 1.4 million with cancer. In other words, chronic pain affects more Americans than diabetes, heart disease, stroke and cancer combined.

So why is chronic pain ignored? Why do we continually have to fight for the dollars to fund research and development of new treatments? The National Pain Care Act languished in the U.S. Senate for many years with no action taken. Under the Affordable Care Act (Obamacare), it was finally incorporated as an amendment that calls for more pain education of physicians, and more dollars for pain research and the development of new treatments.

So where are the dollars? Where is the research? Where are the new treatments?

So far, they seem nonexistent. Instead, the one option that many pain sufferers have – opioid medication -- is being taken away. We are the whipping boys of the “opioid epidemic.”

Many of us have been helped by opioid medication. Some are less disabled by pain. Some are helped enough to continue working and pay taxes, reducing our drain on the economy.

This should be celebrated and expanded, by giving us access to medications that provably help, at least until other treatments become available. But instead of assisting us in improving our lives, the government is giving us policies and “guidelines” antithetical to helping the chronic pain community. The consequences of these dreadful policies – higher healthcare costs, more disability, lost quality of life, and suicide -- are being ignored.

Is that because it makes for better headlines when politicians scream about the so-called opioid epidemic?

There is no doubt there is a big problem with the overuse, abuse and illegal use of narcotics. But we are not the bogeyman in this fight. Less than one percent of opioid medication that is legally prescribed falls into the wrong hands.

If they truly wanted to help the country, they would look seriously at the consequences of making us the bad guys. Many of us who were doing better as a result of opioids have been forced to reduce our dose or are no longer able to get a prescription. It’s not saving lives and it’s not preventing addiction. Look at how the overdose numbers keep rising. This is a benefit to no one. Not for us as individuals or to the country as a whole.

Our pain is invisible, but so too are cancer, diabetes, heart disease and many other conditions. Insulin is okay. Statins are okay. Chemotherapy is okay. Opioids are the devil.

The devil, as they say, is in the details. And the details are very clear. Opioids help pain patients. They allow us to help the country. We keep looking for a way in, to make our voices heard. Maybe we should make patriotism our rallying cry. When you hurt us, you hurt the country. Help us help America.

Until the government, DEA, CDC and politicians can find other ways to reduce or even eradicate chronic pain, take us off your list of opiate abusers.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

I Am a Casualty of the War on Drugs

By Lorelei Bryan, Guest Columnist

I am a 51 year old wife, mother, grandmother and businesswoman, among other things.  Along with all of those other titles and roles, I am a person who lives with chronic pain.

I do not like the label “chronic pain patient,” as it carries with it more stigma and derogatory implications than ever. 

In 2010, I began to experience extreme pain near my left ear.  Suspecting an ear infection, I went to my primary care physician. After examining me and asking a lot of questions, he said I had no infection and that he suspected this was related to the temporomandibular joint (TMJ) in my jaw. Like most people, I had heard of TMJ and thought it was the result of grinding or clenching my teeth. A visit to my dentist confirmed that there was no evidence of grinding or clenching.  He was at a loss. 

Thus began my two year journey of one oral surgeon after another, one therapy after another, and one failed surgery after another, trying to get this condition resolved. All the while, I battled between the primary care doctor and the surgeons on which of them was going to write the pain medication prescriptions I needed to keep functioning throughout this ordeal.

Finally, after two years and seven surgeries of various types, I was referred to an oral surgeon who specialized in TMJ patients with advanced and rare conditions.  A cat scan revealed that arthritis had destroyed almost all of the bone structure in my jaw.  I had to have two more major surgeries; one to remove what was left of the diseased bone and the second to install custom made titanium jaw parts.  

LORELEI BRYAN

The surgeon warned me that the procedures would restore function to my jaw (I could not open my mouth more than a few millimeters), but that I may be left with chronic pain.  He was right on both counts. The combination of the multiple surgeries, scar tissue, damage to the surrounding structure, and permanent nerve damage left me with severe chronic pain from trigeminal neuralgia that will never improve. 

During the final two surgeries, I was working with a pain management specialist who knew my surgeon.  All was well, as they communicated regularly and I was receiving pain medication that allowed me to manage my pain to the point of having a relatively normal life, although not completely pain free. 

In 2014, 18 months post replacement surgery. I received a letter from my pain management doctor explaining that he was no longer treating pain patients. No additional prescriptions would be given to any patient and no referrals to other doctors or pain clinics would be provided.  Just like that, everyone he treated for pain was dropped. Of course, I panicked, as I’m sure many of his other patients did. Being dropped by a doctor for no reason and with no support for transitioning to another provider feels like betrayal.

I sought help from my primary care provider and, fortunately, he said he could treat my pain himself. I was very relieved and grateful to him.  For three years he and I worked together to manage my chronic pain, including the trigeminal neuralgia that the surgeries caused. We were able to use a combination of Tegretol and oxycodone that reduced my need for oxycodone by 20mg per day, as compared to the dose I was on with the pain management specialist.

Never before had my pain been managed to the point it was.  He and my pharmacist know each other well, and the three of us worked together to manage my pain.   

The War on Drugs Targets the Wrong People

Fast forward to June 2017.  I go in for my every other month appointment with my primary care provider. He does his exam, we talk about my other medical issues, and then he gets a grave look on his face.  “I can’t write the oxycodone for you anymore,” he says. 

I am thrown.  He explains that the state has instituted strict limits on who can be prescribed narcotic pain medication and very strict limits on the amounts. I couldn’t breathe. Thoughts of what life would be like without having my pain effectively managed ran through my head -- reduced job performance, reduced job attendance, possible job loss, checking out of the lives of my children and grandchildren, suffering and crying all day like I used to. 

When I gained a little composure, I said, “We are talking about my quality of life here. I know why this is happening. This so called ‘war on drugs’ is creating a war on the wrong people.” 

My doctor agreed that I am a model pain management patient, a “poster child” for the appropriate use of narcotic pain medication. I see only him. I use only one pharmacy and he knows the pharmacist personally. I take the medication according to directions. I do not doctor shop. I do not ask for early refills.  I follow all the rules and still I have to suffer, so that a bunch of bureaucrats who have no right getting involved in what my healthcare provider deems appropriate for me, so they can pat each other on the back and congratulate each other for “striking a blow in the opioid crisis.”  

When I put it that way, the doctor agreed that I was a prime example of a responsible patient who needs this medication and is not a high risk. He agreed to continue writing the narcotic pain medication prescriptions, but explained that new state laws meant we had to almost cut my dose in half. 

I am now trying to manage on much less medication. The increased pain level makes it difficult to concentrate at work. It has made me withdraw from my husband. And it has impacted my ability to be the mother and grandmother I should be.

These bureaucrats and politicians are causing needless suffering for thousands of people in pain, while doing virtually nothing to stem the heroin overdoses that are the prevailing reason for the opioid crisis in the first place.

Is there a serious issue with abuse and addiction to narcotic pain medication?  Of course there is, and something should absolutely be done to address it.  But taking away medication needed by people in chronic pain is not the answer.  Limiting or denying medication to legitimate patients who need it to live and function with any quality of life only creates another crisis. More and more people turn to illegal drugs or, worse yet, commit suicide because their medication has been taken from them and they cannot endure without it.

My question is this: where is our voice?  For all of the politicians and celebrities speaking out on the war on drugs, who is speaking out on the other side of this?  If someone of consequence and influence does not speak out for people in pain, these new laws and limits will create just another silent epidemic and the war on drugs will take more lives than ever.

Lorelei Bryan lives in Virginia.

The Virginia Board of Medicine recently adopted emergency regulations that require doctors who prescribe more than 120mg morphine equivalent (MME/day) to a patient to document the justification for the dose or to refer or consult with a pain management specialist. It does not expressly forbid doctors from prescribing more than 120 MME/day.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Can Marijuana Improve Your Sex Life?

By Roger Chriss, Columnist

A new study by researchers at Stanford University, published in the Journal of Sexual Medicine, shows that marijuana use is associated with greater sexual frequency in both men and women. There has been a lot of enthusiasm about the findings, but relatively little understanding of what the research actually says.

Marijuana has intriguing medical potential, from symptom relief in terminal cancer patients to pain management in chronic conditions. And the possibility that it may improve sexual function is enticing in particular for people with health problems. Thus, it’s important to understand what any new results are really saying. So let’s use this paper as a case study on how to read a research paper.

We start with the study methodology. Because the gold-standard of a double-blind placebo-controlled randomized prospective trial is not possible with marijuana, the authors had to engage in data mining, the process of using an existing data set to ask new questions.

For a data source, the study uses the National Survey of Family Growth (NSFG), a large database assembled by the CDC. The study results were drawn from an analysis of 28,176 women (average age = 29.9 years) and 22,943 men (average age = 29.5).

It is important not to be impressed by these large numbers. Increasing a sample size beyond a certain point offers no additional reliability, and it may create more problems with confounding variables and hidden biases. Because the authors did not assemble this data themselves, there was no way for them to address these issues.

A sanity check of the data is the next step. This study looks at sexual frequency at various levels of marijuana use. A check of the International Encyclopedia of Human Sexuality shows that “on average, men and women engage in sexual intercourse approximately six times per month.”

This is consistent with the Stanford study findings, but with a caveat: recall of the previous month’s sexual activity or marijuana use may be imperfect. Some researchers try to get around this problem by having participants keep written logs or by using apps, but this study did not.

It is also important to keep in mind that the study variable of sexual frequency is an imperfect number. You cannot have sex 0.73 times!  Any change in sexual frequency has to occur in increments of one per unit time. In this study, the unit time is a 4-week period. The increase reported in the study represents the smallest possible increase, or one additional sexual event. The authors found that regular marijuana use was associated with one more sexual event every four weeks.

The study mentions the use of the NSFG data as a limitation. The authors note that “survey responses were self-reported and represent participants only at a specific point in time.” But there is a deeper issue here. As noted above, the data set may contain flaws, biases, or other issues beyond the control or even the awareness of the authors. Formally speaking, randomness is lost. In election polls, for instance, pollsters follow strict protocols to ensure randomness because doing so makes for more reliable results.

In practice, large data sets often contain many associations because life is complicated and even seemingly simple activities like sex are subject to a variety of influences. So posing questions to large data sets requires caution, or as statisticians sometimes say, “give me a large enough data set and I can prove anything.”

The Stanford study’s conclusion is that a “positive association between marijuana use and sexual frequency is seen in men and women across all demographic groups.”

But in an interview with The Washington Post, the authors qualify that by noting that the study “doesn't say if you smoke more marijuana, you'll have more sex,” appropriately warning that correlation is not causation.

Spurious Correlations

But the mantra of “correlation does not imply causation” is simplistic. In reality, association does not even imply direction. It is equally reasonable here to say that greater sexual frequency is associated with increased marijuana use. But changing the word order alters the implication.

The second problem is that the association may be meaningless, an artifact of our data-rich world. Such spurious correlations can even be a source of entertainment. For instance, coital frequency may be correlated with living in an even-numbered zip code or marijuana use may be associated with banana slug activity.

Not to make light of overdoses, but there is even a spurious correlation between deaths caused by opioids and the price of potato chips:

SOURCE: TYLERVIGEN.COM

These associations could be tested, but a positive result would probably not get the kind of media attention the Stanford study is receiving.

Moreover, sexual activity is influenced by a wide range of factors. It is possible that regular marijuana users have a lifestyle more conducive to sex, making lifestyle a lurking variable that affects both sexual frequency and marijuana use. Or it may be that daily marijuana users have more disposable income, more time to enjoy the effects of marijuana, and a more drug-tolerant work situation. In this case, marijuana use would act as a proxy for other potentially causal factors that influence coital frequency.

Because these issues are always found in large data sets, the potential for finding meaningless associations is ever-present. Or as statisticians say, “if you torture the data enough, you can get it to confess to anything.”

Thus, a study of this nature has inherent limitations that mean its results must be interpreted with caution. As the authors note in their conclusion, “the effects of marijuana use on sexual function warrant further study.”

So our final task is to consider what would constitute further study. Obviously, this result needs to be confirmed, ideally with a prospective study that controls for confounders. If the result is reproduced, then the hard work of identifying the causes begins. Once identified and confirmed through human testing, then and only then can we say that marijuana increases sexual frequency. For now the best we can do is read such studies with care and caution.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How Rx Opioids Helped Me Work Again

By Kate Nicholson, Guest Columnist

I recently told 2,200 intimate listeners during a TED Talk how a surgical error left me in severe pain, unable to sit or stand, and largely bedridden for almost twenty years.

I also explained that with appropriate pain management, including treatment with opioids, I continued working as a high-level federal civil rights prosecutor despite my physical limitations. I won important arguments in federal court, arguing from a folding lawn chair. I drafted the current regulations under the Americans with Disabilities Act (ADA), coordinated with the White House, and supervised thousands of cases by hundreds of attorneys across the country from a computer screen and well-camouflaged bed.

And when my pain finally improved, I stopped taking opioids.

A part of me was not eager to go public as someone who used opioids, for the same reasons that I was initially reluctant to take opioids for pain. Opioids carry a stigma, one that is only increasing today in an era of opioid abuse.

The increase in prosecutions and the oversight of physicians, and the difficulty people in pain today experience in getting appropriate pain medication motivated me to tell my story.   

My story of pain began 23 years ago. I was working at my desk in the Civil Rights Division of the U.S. Justice Department, putting the finishing touches on a document due to court, when my back started to burn. It felt like acid eating my spine. My muscles seized and threw me from my chair.  As I curled on the floor, my body seared with pain.

Over the coming days and weeks, the pain only intensified. Any postural compression on my spine caused electrical and burning sensations to escalate like an alarm that grows louder and louder.

At the age of 30, just a few years out of Harvard law school, I could barely stand and sitting was impossible. So, I began to conduct my life lying down. For a while, I was able to commute, lying across the backseat of a car to work from a futon on the floor of my office, using a walker to get from place to place. Then for many, many years, I was entirely bedridden.

Two things allowed me to maintain a life under these circumstances. The first is that I happened to be working in one of the few jobs that would accommodate me. When my pain began, I was enforcing the ADA, a civil rights law that protects the rights of individuals with everything from multiple sclerosis to cancer to HIV disease.

The second and more critical factor was my access to good medical care. My pain began in the 1990s, when the pendulum on pain swung decidedly in the opposite direction of where it is today.  I had access to the best doctors and to treatment at a pain management clinic. My physicians tried all sorts of treatments, from lidocaine infusions and directed injections, to nerve ablations and a surgery to separate nerves from adhesions. Nothing restored my mobility or diminished the pain.

Early on, I refused to take opioids.  I was worried about addiction and stigma.  When my doctors initially approached me about taking opioids for pain, I was, at first, devastated. I felt like they were giving up, that I was being put out to pasture.  But I had exhausted my available treatment options, so I relented and underwent psychological screening to determine if opioids were appropriate. 

As soon as I took opioids, I improved. I wasn’t foggy or especially euphoric. In fact, the opposite happened, space opened in my mind and I could work again.  I also never developed a tolerance, requiring more medication for the same level of pain relief. 

Opioids did not heal me. Integrative treatment over a long period of time did.  But opioids gave me a life until I could find my way to healing. Importantly, they allowed me to continue to work.  

I understand that opioids are complicated. People are different. I also recognize that as a public health matter, the interests of treatment must be balanced against the potential for abuse.  But today we have no such balance: our media attention and public policy focus singularly on abuse.

Serious physical pain needs to figure into the conversation, especially since severe or persistent pain affects 25 times more Americans than opioid abuse.

I worry that we are throwing out the baby with the bath water. By focusing on a single substance, we are not addressing the root causes of addiction.  By placing undue pressure on physicians and the doctor-patient relationship we abandon people in severe pain, many of whom could contribute and lead productive lives, to their suffering.

Kate Nicholson lives in Colorado. She served in the Civil Rights Division of the U.S. Department of Justice for more than 20 years, practicing health-related civil rights law and securing powerful victories including in the U.S. Supreme Court. 

Kate is currently writing a book about her personal experiences with severe chronic pain. She can be reached through her website at www.katemnicholson.com. 

You can watch Kate's TED Talk below:

Should You Tell an Employer About Your Chronic Pain?

By Lana Barhum, Columnist

Telling your boss or a potential employer about your chronic pain condition can be slippery slope. 

If you disclose it, you may wind up dealing with judgments and misguided attitudes from supervisors and coworkers about the extent of your chronic pain. On the other hand, if you don’t disclose it, you may miss out on accommodations you need and are entitled to.

There is always going to be risk when you disclose. And it is hard to know whether an employer will be accommodating or treat you unfairly.   

You do have rights as an employee and a person living with chronic pain. You should know what they are before you decide whether to disclose.

You Do Not Have to Be Visibly Disabled

Many people who live with chronic pain don’t consider themselves “disabled.”  Even so, they may still qualify for accommodations under the federal Americans with Disabilities Act (ADA).

The ADA defines a person with disability as someone who has “a physical or mental impairment” that significantly alters one or more major life activities. You may have trouble sitting, standing or walking, for example. The key is whether the limitation is substantial

It is important to note the ADA’s definition is a legal one, not medical. And because it is a legal definition, the meaning of disability is different than it would be under other laws. The ADA doesn’t list all the covered conditions, which gives some flexibility to people living with  non-specific chronic pain; which is pain that lasts longer than three months, but has no specific medical cause.

For example, you could have joint pain from rheumatoid arthritis, while someone else’s back pain may not be related to a specific event or health condition. It doesn’t make the other person’s pain any less valid than yours or diminish their need for job accommodations. Back pain would still be considered an impairment.

You Do Not Have to Disclose When Job Hunting

The ADA does not require you to disclose your medical conditions when interviewing and applying for jobs.  However, the employer is allowed to ask questions about whether there is anything that could prevent you from doing the job required. 

They may inquire about medical conditions and request a medical exam, but only if they are doing this with all their new hires and being in good physical health is a requirement to perform the job.

You Do Not Have Disclose When You Start a New Job

If you didn’t disclose your condition while interviewing or when you started the job, you can still ask for accommodations later.  You have the right to ask when the need arises.

If you request an accommodation, an employer is allowed to ask for a reasonable corroboration of your need for one,  such as a doctor’s letter. You can disclose what you want about your medical condition and it doesn’t have to be everything.

You Can Disclose on Your Own Timetable

You are under no legal obligation to tell anybody at your job about your chronic pain.  Your employer also does not have any legal right to request this information from you; unless it involves health and safety obligations they are required to meet.  

It is your decision when and if you want to tell your employer, ask for accommodations and/or share with your co-workers.  You never have to let anyone know if you don’t want to.

Should You Disclose?

If you believe chronic pain affects your ability to do your job, think about the ways it does and what solutions there might be.  For example, are you leaving work often for medical appointments? Would a flexible schedule or working from home one day a week help your situation?

Or could you benefit from other tools that make it easier to work, such as an ergonomic workstation?  Keyboards, mice, office chairs, standing desks and other ergonomically designed tools are increasingly being used in the workplace because they reduce the risk of back pain and other musculoskeletal disorders. 

A good resource where you can find examples of accommodations for specific medical conditions is the Job Accommodation Network.

Things May Not Go as You Plan

If you choose to disclose, you may not get the response you want. Your employer is prohibited by law from terminating you based on your need for accommodation.  However, they might find other ways to get rid of you or retaliate, such as changing your work schedule or denying you a promotion.

They’re taking a big risk if they do. Any form of retaliation when someone asserts their rights is illegal under the ADA. The question will be -- can you prove it? Always keep good records and notes about your communications with an employer about your medical conditions.

Your employer can deny your request for a specific accommodation, provided they are willing to accommodate you in other ways.  For example, if your office space is cold and your joints hurt more in that environment, they could deny your request for a space heater due to fire concerns, but offer to move you to a warmer section of the office as an alternative.

The good news is that your employer cannot flat out deny your request for accommodation. They are required to make a good faith effort to accommodate you in ways that make it easier to do your job with chronic pain.

Good Employers Want to Keep Good Employees

There are no easy answers as to whether you should or shouldn’t disclose your chronic pain to your employer. You should do what works best for you and your workplace. A good employer will be motivated to keep you and will do everything to accommodate you. Others may not.

Make sure you are continually updating your resume and your skill-set should you need to look for a new job.

I have been fortunate to work for companies that have accommodated my needs as a person with chronic pain.  They have understood my need for a flexible work schedule, an ergonomic workstation, and to be able to leave work early or show up late after medical appointments. They’ve made it easier for me to be successful at my job.

I know the idea of disclosure can make you nervous, but it may help you get the support necessary to be a better employee.  From my experience, most employers are accommodating and want to keep valuable employees. They know that the best employees are found in comfortable workplaces.

Lana Barhum is a medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.