An Open Letter to My Senator: CDC Has Killed Me

(Editor’s Note: Charles Malinowski is a 59-year old Paso Robles, California man who lives with Reflex Sympathetic Dystrophy (RSD), degenerative disc disease, ankylosing spondylitis, spinal stenosis and other chronic pain conditions.  He recently wrote this open letter to U.S. Senator Kamala Harris (D-CA). We thought his letter worth sharing with PNN readers.)

Dear Senator Harris,

The CDC has killed me!

Let me repeat that: The CDC has killed me!

I have a severe neurological condition that causes me unspeakable and crippling pain. Pain medication is literally the only thing keeping me alive. But with the issuance of the CDC’s short sighted, so-called voluntary opioid prescribing guidelines -- which are being rammed down the throats of medical providers -- my pain management doctor has cut me off of opiates.

For the last 10 years, I have been subjected to nearly every type of physical therapy, medical treatment and medication applicable to my affliction. The one and only thing that has ever had any demonstrable benefit in even temporarily suppressing my pain to a tolerable level has, unfortunately, been opiates.

In early October, I was told that I would have to stop taking either the oral opiates or the intrathecal opiates, as it was now illegal for a person to receive two different types of opiates via two different delivery methods concurrently. This was a major problem, as even with both oral and intrathecal opiates, my pain was severely under-managed to the point where I was almost completely bedridden. I left the house only to go to doctor's appointments.

When I was told that my pain management regimen - specifically the opiates - was going to be cut in half, even though my pain was already grossly under-managed, I spoke out about this.

CHARLES MALINOWSKI

As a result, not only was I cut off from the oral opiates, I got kicked out of the pain management practice where I have been a patient for more than seven years. The doctor said he didn't want to risk his license - but was perfectly willing to risk my life - over the CDC opioid guidelines.  These guidelines are supposed to be voluntary and are not supposed to take desperately needed pain medication away from legitimate chronic pain sufferers such as myself.

I expect that within 60 days, I will be dead from either heart failure or a stroke due to my body's inability to cope with the stress of the unrelenting pain. My neuropsychologist, who has been treating me for nearly 10 years, has consistently rated my level of pain as moderate to extreme, even while being medicated with both oral and intrathecal opiates, which I am now denied.

I'm not dead yet, but within 60 days I expect that the CDC will have effectively killed me. I honestly don't see myself being able to tolerate the pain any longer than that.

Congress, in going along with this blindly, will be explicitly complicit in this negligent homicide - or homicide by depraved indifference, take your pick - of one Charles James Malinowski, that being myself.

I would like to thank you, Senator, and all the rest of your colleagues for murdering me.

To help ease your conscience, it is not just me that Congress is complicit in murdering, but thousands, possibly tens of thousands of people in like positions.

Sincerely,

Charles Malinowski

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.

Stem Cells: Signs of Progress in a Rigged Game

By A. Rahman Ford, Columnist

The Wall Street Journal recently published an article on the use of stem cell therapies for knee problems, including arthritis.  Overall, the perspective of the piece was positive and it has several laudable aspects.  Physicians from large academic institutions, such as Harvard University and Stanford University, were interviewed to provide their opinions on the use of autologous stem cells derived from a patient’s own fat or bone marrow for certain painful orthopedic indications. 

The article rightly acknowledges the high patient demand for these autologous therapies. It also mentions how the U.S. lags behind other countries in offering them and the disturbing fact that this therapy is not covered by medical insurance.  The doctors who were interviewed also discussed how conventional approaches to osteoarthritis in knees – meniscus surgery, microfracture surgery, etc. – often fail to demonstrate long-term benefit.  These doctors, along with many others around the world, recognize that we need new therapies for orthopedic conditions.

Any positive portrayal of the clinical uses of stem cells should be welcomed. The unfortunate truth is that many potential patients are scared off by publications that focus their reporting on the alleged malfeasance of a few bad-actor stem cell clinics.  These same publications often neglect to cover the countless stem cell success stories from clinics in the U.S. and abroad. 

A focus on these promising results may help allay those fears and convince some of those fearful patients that stem cells are, in fact, a viable medical option for their chronic orthopedic pain. 

Less fear can lead to self-education and increased awareness of the safety and potential of stem cells.  Patients may even try stem cell therapy and become advocates.  In this sense, the WSJ piece is good public relations for stem cell therapies overall.

However, there is an unsettling undertone in the WSJ piece and media coverage in general of stem cells, which places too much emphasis on the opinions of clinicians from certain large institutions.  That diminishes the value of work being done in smaller stem cell clinics, which have been safely and effectively treating patients with orthopedic conditions for years. 

The unintended implication is that Harvard and Stanford physicians’ assessments are more legitimate because of the perceived prestige of their employers, and because they follow the guidelines that the FDA set forth for pursuing such treatments.  Of course, these institutions have millions of dollars in capital that it takes to conduct clinical studies and comply with these guidelines, while smaller clinics often do not.  We must take care to avoid creating or reinforcing illegitimate hierarchies that give some physicians more scientific authority than others, based solely on money, perceived prestige, or the ability to adhere to an unfair set of rules.

The sad truth is that the stem cell game is rigged.  The FDA’s rules regarding the use of autologous stem cell therapies favor those with more financial resources because they can afford expensive clinical trials.  Medical innovation cannot be strictly the domain of wealthy institutions with the finances to play on a tilted field.  The FDA’s “minimal manipulation” and “homologous use” regulatory standards for using stem cells are unduly burdensome and need to be relaxed for autologous stem cell uses. 

Recently, the FDA issued a warning letter to American Cryostem, a company involved in the manufacture of adipose stem cell products derived from a patient’s body fat.  In addition to manufacturing violations, the company was accused of violating the FDA’s “minimal manipulation” and “homologous use” standards. 

Setting the merits of the case aside, it is emblematic of the FDA’s crackdown on clinics that are much smaller than Harvard and Stanford, but which have been relieving patients’ pain with autologous therapies for years.  Their scientific contributions must not be subordinated or dismissed as illegitimate or inconsequential.

Stories of how stem cells are entering mainstream medicine can help us realize the goal of available, affordable stem cell therapy for all Americans.  However, valorization of those institutions with the means to “play within the rules” must not come at the expense of sounding the alarm that the rules themselves are patently unfair.

A. Rahman Ford, PhD, is a lawyer and research professional. 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.

5 Steps to Successful Advocacy for Pain Community

By Barby Ingle, Columnist

When it comes to advocating for the pain community, there are many roles to fill and many ways to go about doing it. There are patient advocates, legislative activists, social media activists and self-advocates.

I do a little of each and see that the most common mistake in activism is when patients join an organization without fully understanding the legislative process, how long it takes, and that there’s no guarantee that the desired outcome will be reached.

This is a topic I have seen on many of the upcoming pain conference agendas for 2018. I have been asked to speak at a conference about it, and while preparing my talk I realized that patients need more information on what it takes to build a pain organization into a successful change maker in public policy and legislation.

There is a 5-step process that I use to insure that a message is heard, supported, and goes from being an idea to actual legislation at the federal or state level. It takes a never-give-up attitude, with a big influx of time, effort, follow-up and social media support.

First, when crafting legislation to improve patient care or some other goal, you need to start by creating an implementation plan. This plan should outline a budget, strategies, leadership responsibility and timelines for goals to be met.

Second, the team leader must clarify the roles of the advocacy team and communicate that role to the rest of the leadership team, staff and volunteers. There are many personalities and challenges that will come up, so having the right people in place working together is very important.

Third, confirm that all team leaders express support for the initiative in meetings with legislators and their staffs. Allow additional time for the implementation of each step. Things tend to take longer than they should when working with teams and with government officials. The leadership should organize volunteers, create training resources, reach out to the media (and have patient stories ready for them), and provide effective speakers for hearings and press conferences. Be sure to include healthcare professionals and patients on your team.

Fourth, monitor the progress of the legislation closely. There are usually a lot of “hurry up and wait” situations and it could take years before a bill gets out of committee or comes up for a vote.  Sometimes mid-course corrections and negotiations are needed with legislators to gain their support and to keep a bill from dying, especially if a mandate or money is involved. 

Fifth and finally, carry out your strategies to achieve your goals. Your leadership team and volunteers should understand the bill and the legislative process, and be using marketing and social media tools to gain public support and awareness about why the legislation is needed. Staying motivated is critical to success. Keep your staff and volunteers involved and committed to making a difference in their own lives and the lives of others.

If you are a chronic pain patient and want to get involved, understand that this type of work takes physical action, but it doesn’t have to be all encompassing. Volunteer with advocacy groups or non-profits that are already working on legislative issues that interest you. See what fits you and volunteer to be a team leader or social media supporter. Share your story and why the bill is important to you, or even testify in person at a legislative hearing.

Be the change agent that we all need in getting proper and timely healthcare for the chronically ill.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) 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.

A Pained Life: An Unexpected Gift

By Carol Levy, Columnist

This past Christmas I started thinking about a Christmas long past.

I lived in New York City at the time, but was spending the holidays at my mother's house outside Philadelphia. My family had been estranged for many years (especially from me), and for some reason one of my two sisters came to the house to spend Christmas with my mother and I.

The presents were opened, gifts from my mother to us and from us to our mother. I had nothing for my sister and expected nothing from her.

There were a few more boxes under the tree, but I assumed they were gifts for other people for later that day. To my amazement and consternation, my sister picked up one of them and handed it to me. “This is for you,” she said.

I took it with trepidation. “Why is she giving me a gift?” I asked myself while slowly removing the wrapping. I worked hard to keep my expression neutral as I pulled off the tissue paper and looked at the gift.

It was a blouse, bilious green decorated with farm animals, silos, barns and ribbons. It was probably the ugliest thing I had ever seen.

I smiled nicely, thinking what is her point? Why waste money to tell me via a blouse how much she dislikes me?

“Oh, thank you. This is.... really... nice,” I said.

My sister’s only reply was, “You're welcome.” There was nothing to indicate she meant it as the insult it sure as heck seemed to be.

Later on I walked into the kitchen. My mother was crying, “I can't believe she would give you something like that!”

It was awful. How mean, childish, and cruel. Such a waste of money merely to hurt someone, and for reasons never explained.

I returned home to New York. I hate the idea of wasting anything, so instead of throwing out the blouse, I decided I would use it as junk clothing, for painting or using solvents, etc. Nothing I could do to it would make it worse than it already was.

I had not taken it out of the box. I did so now and put it on. I looked in the mirror. To my amazement, it was adorable. In the box it was a horror, but somehow once I put it on, the ugly worked its way into cute.

I wore it until it wore out. I can't count the number of compliments I got, like “Boy, is that adorable.”

So what is the take away?

I didn't give the shirt a chance. I jumped on the meaning of it – horrid, mean and nasty. I didn't say anything to my sister or ask why she would give me something so ugly. I knew what it meant. I didn't need any help with the translation.

I think of this story sometimes, when someone I thought I had a good relationship with says to me, “Your pain can't be that bad” or “I've seen you climb the stairs, so I know you can.”

That’s like waving a red flag before a bull. Or a ringing bell to a boxer. How dare they! What does it take to get them to accept my pain and disability? My anger rises with my blood pressure. I am ready for a fight. 

But maybe I am jumping to a conclusion that never was.  Could they have meant something else? Maybe even an awkward kindness like, “I don't want you to have pain that bad. I don't want you to be so disabled.”

Maybe Ogden Nash said it best in his poem, “I Never Even Suggested It.” It was written about men and women quarreling, but I think the last line is what counts: 

In real life it takes only one to make a quarrel.

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.

How to Prepare for a Scheduled Hospitalization

By Ellen Lenox Smith, Columnist

No one enjoys the experience of being admitted to the hospital. Indeed, hospitalization can provoke extreme anxiety, which does not contribute to successful outcomes in any medical procedure.

Proper preparation before you go to the hospital not only reduces stress, but enhances the probability of a successful medical experience and helps promote a smoother healing process – all of which lead to considerable benefits to the patient.

For example, while recently preparing for a revised neck fusion, I realized that eating would become an immediate issue because nutrition is so important for healing. I don’t want to rely solely on hospital food, so I am preparing meals that I puree and freeze for my husband to bring to the hospital that I can sip through a straw.

Here is a list of other things I plan on doing:

• I plan to arrive with all of my compounded medications in their labeled containers, along with my regular pharmaceutical drugs, so I will not miss any scheduled doses.
• I will bring my entire medical folder, which includes my name, address, insurance coverage, contact information for my primary care doctor, pharmacy and nurse case manager, a list of medications and dosages, a list of medications I am sensitive to, previous surgeries, and my diagnoses.
• I will also include a list of Do’s and Don’ts to help keep the staff educated about Ehlers Danlos Syndrome and keep me safe when I might not be able to advocate for myself.
• I will pack my supplements that I will take after the surgery, so my body is allowed to quickly return to the routine it is used to.
• I will bring a special pillow that I sleep with that keeps my head in the correct position all night long (I use the Therapeutica Sleeping Pillow).
• I will give to the staff my list of food sensitivities and request to meet with the hospital dietician in hopes of getting food delivered that I can metabolize.
• I will pack t-shirts, loose flannel pants and warm socks so I can walk around the halls comfortably, instead of having to wear those lovely gowns you wake up from surgery in!
• I will bring a small bag of toiletries I prefer to use, along with a comb, brush and a toothbrush since what they provide always seems to be so skimpy.
• I will prepare a list of friends and family phone numbers for my husband/caregiver to contact after the surgery is completed.
• I will bring my Living Will and any needed directives.
• I will wear my medical alert bracelet and will ask that they please read what is on it!
• I will bring my own BiPAP breathing machine, so I know I am sleeping with the correct readings. I’ll also have the doctor write down the exact setting in case the hospital decides to use their own machine.
• I’ll bring things to do that are simple and peaceful that will help calm me, as well as items that will help re-stimulate the mind, such as Sudoku puzzles, adult coloring books and quiet music to listen to.
• I will pack enough food for my service dog to cover a few weeks, in case we stay longer than expected. I will also make sure I have her list of shots and credentials proving she is a legal service dog.
• With serious food sensitivities, I always pack snacks.
• I will bring paper and pen to jot down things I want to remember to ask the doctor when he arrives in the room. It is not a time to count on one’s memory!
• I will bring my cellphone and charger to keep connected to the world when back in a room.
• I will bring a list of my passwords in case I need to use the internet.
• I will contact my case manager nurse to alert her of the upcoming surgery, so she is able to help assist with in any snags that might come up and arrange for home healthcare when I’m discharged from the hospital.
• Many of my surgeries are out-of-state, so I make sure my primary care provider clears me for surgery in writing and sends a copy to the hospital. I’ll also bring a hard copy with me, in case they don’t get it or it is misplaced.

Anything a patient can do to simplify the hospitalization is worthwhile! For those of us with complicated and rare medical conditions, we must be prepared to advocate for ourselves. I have found that, for the most part, hospital staff does appreciate enlightened input from patients on best practices and how to keep us safe from harm.

As effective patient advocates, we need to educate others not only for our own safety, but to benefit future patients with our condition.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their 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.

4 N’s That Can Help Lower Pain Levels

By Barby Ingle, Columnist

I have covered 28 treatments so far in my alphabet series on alternative therapies that can be used in the management of chronic pain. I am now moving on to the N’s of pain management -- two of which I have tried and two that I learned about while researching this article.

Nerve Blocks

A nerve block is the injection of an anesthetic or anti-inflammatory drug into a nerve or group of nerves to relieve pain. I had this procedure 37 times over a 3-year period, starting in 2005. In my case, the injections were made in my neck into a group of nerves called the stellate ganglion. The injections did not take away my pain, but they lowered the intensity of it and helped me function better for a limited time.

As with most therapies for pain, nerve blocks are not a lasting treatment or cure. They are only a tool to manage pain and can help diagnose where the pain is coming from. Diagnostic nerve blocks are typical done to determine if a longer lasting treatment or procedure could be more successful in treating pain.

My first nerve block gave me pain relief for only about 3 hours, but it also showed my doctors that I had sympathetically maintained pain -- a form of Reflex Sympathetic Dystrophy (RSD).

Some people receive a few nerve blocks and experience months to years of extended pain relief. For me, it was only a few hours, but when the blocks were later combined with radio frequency ablations, I would get up to 20 days of pain relief. The nerve blocks also helped me avoid additional surgery and having to take daily medications.

There are many types of nerve blocks that can be performed on different body areas. Injections can be made in the face, eyelids, scalp, forehead, upper jaw, nose and palate, neck, shoulder, elbow and wrist, as well as the abdomen and pelvis. The procedure can be painful, so many providers sedate patients or give them a local anesthetic. I was sedated for all of my nerve blocks except one, where the IV failed. 

Nitric Oxide

Another treatment I am hearing some alternative providers suggesting is nitric oxide, a gas that relaxes muscles and improves blood flow, especially in the lungs. Some intractable chronic pain conditions, such as chronic orofacial pain, can be helped by taking nitrous oxide supplements. These supplements don’t actually contain nitric oxide, but provide amino acids and other ingredients that increase nitric oxide production in the body.

Nitric oxide helps lower blood pressure, increases circulation, and improves cardiovascular and heart health. Athletes have used nitric oxide supplements for years to build muscle, and increase speed and endurance. The closest thing I have tried to a nitric oxide supplement is creatine, back in the day when I was a college athlete and coach. I was using it in a totally different setting and was monitored by trainers and team doctors, but I wonder now if creatine helped me more than I understood at the time. 

It is important to note that taking too much creatine or nitric oxide supplements can be harmful. But if you can find the correct dose and are closely monitored, they can be useful tools to help with some of the secondary effects of living with chronic pain, such as chronic fatigue. Some of the most common side effects from nitric oxide supplements are an increased urge to urinate, reduced dopamine levels (which we need for sleep), zinc deficiencies, nausea and stomach cramps. If you are a diabetic type 2, this is probably not a good option for you because blood sugar levels tend to go up as nitric oxide levels increase.

Neurotransmitter Regulation

A treatment I have used over the years is neurotransmitter regulation, which is the use of antidepressants and anti-anxiety medication to help manage depression, anxiety and other mood disorders. I no longer need these types of drugs, as I was able to learn through psychological counseling new coping skills to better manage my moods.

Mood disorders can be caused by chronic pain, which disrupts the production of neurotransmitters, the chemical messengers that our bodies produce to regulate our nervous systems. The four major neurotransmitters that regulate mood are Serotonin, Dopamine, GABA and Norepinephrine.

Medications can be used treat mood disorders. For example, anti-anxiety drugs that are receptor agonists – such as Valium, Xanax, Klonopin and other benzodiazepines -- bind to receptors and mimic the way a natural neurotransmitter decreases anxiety.

I can’t stress enough how common it is for people in pain to develop depression and anxiety, due to the challenging situations we face with our physical, emotional and mental health. Don’t be shy about discussing these needs with your provider. We must address all aspects of living with chronic pain and our mental stability is important to maintain.

Nabilone

The final option I looked at in the N’s is nabilone, a medication that is approved for treating or preventing nausea and vomiting caused by chemotherapy. A few studies have shown that low doses of nabilone can also be effective in managing chronic pain from fibromyalgia and multiple sclerosis, although that would be considered an “off label” use in the United States.

Nabilone is a synthetic cannabinoid that mimics tetrahydrocannabinol (THC), the primary psychoactive compound in marijuana. According to the studies I’ve read, researchers believe that nabilone can benefit patients not only by reducing pain, but in improving quality of life. In a head-to-head trial of nabilone and a weak opioid medication, nabilone had similar pain relieving effects in patients with chronic neuropathic pain.   

Once again, I hope that I was able to share something new with you. I encourage you to be open-minded when it comes to using alternative therapies. Always talk with your provider to make sure you are on the same page and that everyone involved in your care understands the treatment plan and the options you are choosing.

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.

Tylenol for Postoperative Pain?

By Margaret Aranda, MD, Columnist

I saw them do it to our veterans. Now they were going to do it to me.

I heard the veterans scream decades ago, when I was president of a pre-med club at a VA hospital in Los Angeles. There was a little local anesthetic, no oxygen, no vital signs and no anesthesiologist. The hematologist-oncologist did the bone marrow extraction herself.

Now I was about to have the same procedure myself, to get an early diagnosis of mastocytosis, an orphan disease.  No one was going to tell me that I won’t hurt. The veterans fought in a war, yet they screamed.

After taking my vital signs, the intake nurse interrogated me, eyes peering over her bifocals.

“When was the last time you took OxyContin?” she asked.

(My thoughts: We never asked such a scrutinizing question. They could draw an opioid blood level, to “check” and see if I was telling the truth. Sure, my blood levels would be low, because it’s been a week. I’m not a drug addict. Big breath. Don’t let your thoughts get negative. Just get through this day.)

Postoperative pain was a big concern for me.

“What will I get for post-op pain?” I asked the anesthesiologist.

(My thoughts: I don't want to cry. I don't want to hurt. I've had a lifetime of pain, and I live with it daily. Sores pervade me. They are all over my head, itchy ones that feel like cold sores mixed with chicken pox. If I scratch one, they all itch, including the sores on my arms and back. How much worse is my life about to get?)

"Tylenol. No post-op opioids for pain," was his reply.

You bet my world crashed.

"I can't do Tylenol. I need to save my liver. Everyone knows the smallest dose of Tylenol can hurt the liver. Besides, I don’t want to lose my empathy. Studies show acetaminophen causes a lack of empathy,” I said.

“Ibuprofen,” was his answer.

(My thoughts: How much lower can my world crash? What the heck? Do you really know I’m a doctor, too? Do you know how many patients I’ve personally intubated through a GI bleed so they could breathe?)

“I can’t do ibuprofen,” I told him. “I can’t have a GI bleed. Or a heart attack. Or a stroke.”

“Oh, okay! Morphine and fentanyl, a mixture. Morphine lasts longer," the anesthesiologist said.

(My thoughts: I can breathe again. Now I have to be the perfect patient.)

The pathologist was cheery, polite and smiled a lot. We went over the pathology of mastocytosis, WHO classifications, the systemic vs. cutaneous forms, early diagnosis, and the bone marrow procedure I was about to have. He asked if I had enough opioids for post-op pain. I did. I concluded that he does not write his own pain prescriptions.

Once on the operating table, the surgeon caressed my head, patting it before I fell asleep. I inwardly smiled as I laid straight on my right side. Cold prep solution dripped down my lower back as I sunk into sleep.

The surgeon bore into the ileum, then sucked out the bone marrow with a syringe.

When I woke up, my butt was numb and I did not need any more pain medication. But I was not given a prescription for postoperative pain for when I went home. I was told to use my existing opioid prescription for pain, which is reasonable, as long as my doctor doesn't "count" them against me.

(My thoughts: How do patients defend themselves to get opioids for during and after surgery? I mean, I’m a doctor and I had to stick up for myself. What if the patient does not even know to ask about postoperative pain at all? They must wake up screaming, an insult to any anesthesiologist. What has happened to patient care?

They profession of anesthesiology has changed.

Dr. Margaret Aranda is a Stanford and Keck USC alumni in anesthesiology and critical care. She has dysautonomia and postural orthostatic tachycardia syndrome (POTS) after a car accident left her with traumatic brain injuries that changed her path in life to patient advocacy.

Margaret is a board member of the Invisible Disabilities Association. She has authored six books, the most recent is The Rebel Patient: Fight for Your Diagnosis. You can follow Margaret’s expert social media advice on Twitter, Google +, Blogspot, Wordpress. and LinkedIn.

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.

No, I Don’t Want a Spinal Cord Stimulator

By Crystal Lindell, Columnist

There’s a word that my best friend came up with that we now use when someone is being obscenely awful: J-hole.

It’s a mix between a jack [redacted] and an [redacted] hole. Get it? J-hole. You’d be surprised how useful it is. Especially around kids.

And can I just tell you something? The pain specialist I saw yesterday? He was a real J-hole.

I used to think I just had a string of bad luck when it came to doctors and it was some weird coincidence that most of the ones I met were J-holes.

But now I’m starting to wonder if there’s something about the medical profession that has a way of attracting an above average number of J-holes.

Yes, there are good ones. I think I’ve met two of them — in six years with chronic pain. But most of the doctors I see? Well, they’re J-holes. And this guy was one of the ones that prove the rule.

He is obsessed with me getting a spinal cord stimulator. But I do not want to get a spinal cord stimulator. It’s created some friction.

This was only my second time meeting with him. He oversees a local pain clinic where I now get my weekly lidocaine infusions. It’s been great, because before I found this place, I had to drive two hours each way to the closest university hospital for the infusions. And I am too sick to drive afterward, so I was always begging people for rides. This place is about a half hour from my house, and right by my mom’s work, so it’s super convenient.

But every single time I go in, they try to sell me on this spinal cord stimulator thing. And I’m just not interested.

I usually see another doctor, a woman. Technically, I think she’s a nurse practitioner. And she at least has the ability to read a room. She presents the spinal cord stimulator every week like one of those cashiers at Kohl’s who is required by corporate law to ask if you want to sign up for a credit card, but who knows just as well as you do that you’re never going to be interested. And then we both move on. 

She’s in Mexico for Christmas though, so yesterday I had to see the J-hole guy. And he’s not someone who likes to hear the word no.

He asked me if I was interested in the stimulator, and I told him I wasn’t. Then he asked why not, so I told him I talked to my primary care doctor and he didn’t recommend it, which was true.

My PCP, who is an internal specialist at a university hospital — so you know, qualified — said I probably wouldn’t get much more relief than I get from the infusions, and that I would probably still need to take hydrocodone.

He also told me that a fair number of the patients he knows who got a stimulator ended up getting infections from it. And so for now, he recommends that I stick with the lidocaine infusions.

I trust this guy. He’s been my PCP for like five years and he has always taken my pain seriously. He’s one of the two doctors I’ve met who is not a J-hole.

And you know what this pain specialist said when I told him what my PCP said?

“Well that guy doesn’t know what he’s talking about.”

Ok. Cool.

So then I told him that I write for a pain site online and I’m pretty connected to the pain community and I have heard nothing but bad things about these stimulators. They’re hard to remove. The batteries die. They don’t work that well.

His response to that was, “You can’t believe everything you read online.”

Always a good thing to say to someone who just told you they write for an online publication, am I right? My sister was in the room and told me later she wanted to laugh in his face when he said that.

Then he tried to lecture me about getting weekly infusions and said insurance wasn’t going to be willing to cover those forever, and in my head I was like, OK, did my insurance tell you that? Or are you just annoyed that I come in here every single week and give you hundreds of dollars in revenue for what is basically a simple IV, and you would prefer that I stop? Because I can always go back to the hospital for infusions, where they at least offered me graham crackers every week.

His main selling point was that the stimulator would free up my life, so that I wouldn’t have to deal with the weekly infusions. It’s an argument that makes sense to healthy people, but what he doesn’t understand is that the infusions are what have freed up my life.

Before the lidocaine, I was lucky to get one good day a year. Now I spend one day each week dealing with an IV drug that makes me nauseous and tired and then I get the whole rest of the week to live my best life. It’s amazing! Plus, I get the added benefit of not having to have surgery on my spine.

Look, at the end of the day, the idea of getting something implanted into my spine just doesn’t sit well with me, even if complications are rare. Especially since I have a bad habit of having rare medical issues.

And it’s hard to take a doctor seriously when you know he stands to make thousands of dollars if I get the stimulator. But for now, I’m stuck going to this pain clinic for my infusions because everyone else in town says they are too risky to do.

But no, I’m not going to be getting a spinal cord stimulator. Maybe I’ll change my mind though. After all, you can’t believe everything you read online.

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.

What’s the Difference Between Opiates and Opioids?

Rochelle Odell, Columnist

Like many of you, I use the words opioids and opiates interchangeably. I incorrectly thought one was singular and the other plural. It pays to look up definitions before using a word!

Merriam Webster defines opiate as “a drug containing or derived from opium and tending to induce sleep and alleviate pain.”  The first known use of the word “opiate” was in the 15th century. Natural forms of opiates include morphine, codeine, heroin and opium.  

Merriam Webster defines opioid as “possessing some properties characteristic of opiate narcotics but not derived from opium.”  Interestingly, the first known use of the word “opioid” was not until the 1950’s. Two of the most widely prescribed pain medications, oxycodone and hydrocodone, are opioids.

Just Believe Recovery, an addiction treatment center in Florida, has a straightforward explanation of the difference between opiates and opioids on its website:

“Opiates are alkaloids derived from the opium poppy. Opium is a strong pain relieving medication, and a number of drugs are also made from this source.”

“Opioids are synthetic or partly-synthetic drugs that are manufactured to work in a similar way to opiates. Their active ingredients are made via chemical synthesis. Opioids may act like opiates when taken for pain because they have similar molecules.”

But neither opiates or opioids make pain go away – what they do is temporarily block pain signals.  

"Both of these types of drugs alter the way that pain is perceived, as opposed to making the pain go away. They attach onto molecules that protrude from certain nerve cells in the brain called opioid receptors. Once they are attached, the nerve cells send messages to the brain that are not accurate measures of the severity of the pain that the body is experiencing. Thus the person who has taken the drug experiences less pain," is how Just Believe Recovery explains it.

The problem with this definition is that it fails to address why an addict uses heroin and other narcotics. It's not to relieve physical pain, it's for the euphoric effect or high. Big difference.

I can attest to that feeling. Years before I developed Complex Regional Pain Syndrome (CRPS), I was hit by a beginner snow skier, who caused a nasty spiral leg fracture. I screamed in pain for what seemed like hours, until a Demerol shot was given. It still hurt, a lot, I just didn't care that it hurt.

A week after the accident, I received a call from my orthopedist (who ultimately saved my left leg) informing me I must get to the hospital for immediate surgery. It turned out that my broken leg had not been reset and cast properly. A rod was inserted to correct the problem, but the post-op pain was excruciating.

I was on strong opioids for the next three weeks, until I had to go back to work and stopped cold turkey. I needed to work with a clear mind, and it was going to hurt whether I was at home or work. I had no cravings for pain medication and no addiction developed. Simply didn't need them.

However, after I developed CRPS and slowly titrated up on Dilaudid, the pain was different than it was from the broken leg. The relief obtained was not the "I don't care" reaction, but one of the pain is less, now I can do what needs to be done at work or at home. That’s the classic difference between acute, short term pain and chronic pain.

"When people use these medications only to treat pain as directed and for a short time, they are less likely to become addicted. Prescription drug addiction occurs when patients develop a tolerance for the level of medication they have been described and no longer get the same level of relief," is how Just Believe Recovery explains it.

"They may not have the same expectations for relief as their physicians and may equate the term ‘painkillers’ with the medication being able to take away all of their pain, while their doctor may be thinking in terms of pain management, which means bringing the pain to a level where they can function at a reasonable manner. When expectations do not match, patients may take more of the pain medication than prescribed to get a higher level of relief and in turn develop a drug addiction issue."

The CDC and several states have now decided to establish what acute pain is and how long it should be treated with opioids, be it three or five or seven days.

But if you suffer from a chronic pain disease or condition, a few days’ supply won’t cut it. You require the medication long term in order to function. Not addicted mind you, you just want the pain at bay. We all know pain medication does not “kill” the pain. It just becomes tolerable. Most pain patients do not increase their pain medication and many, including me, have been on stable doses of opioids for many years.

We also know pain patients are not the driving force in today's misguided opioid crisis or public health emergency or whatever you wish to call it. Illicit drug users are, and they are primarily young adults who snort, smoke or inject heroin and illicit fentanyl. Many are addicts who are in methadone clinics, and they still abuse not only the methadone but other drugs as well.

It's like everyone in power or who is affiliated with rehab has blinders on. Pain patients have become the issue, yet statistics clearly show we are not the problem. The rate for opioid abuse in pain patients is at or less than 5 percent.  Why are patients singled out in this battle?  Even the CDC admits opioid prescriptions are no longer the driving force in the overdose crisis. I believe they never were.

Opiates and opioids are not the same, and should be addressed separately. Instead, they have become interchangeable. We don’t have a heroin or opiate epidemic; we have an “opioid epidemic.”  The government usually lumps them together as one. And, as we all know, what the government decides somehow becomes set in stone.

Rochelle Odell lives in California. She’s lived for nearly 25 years with Complex Regional Pain Syndrome (CRPS/RSD).

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.

12 Great Gifts of Knowledge About Chronic Pain

By Pat Anson, Editor

Still looking for a special gift for a loved one over the holidays? If they live with chronic pain -- or if you have pain and want a friend or relative to have a better understanding of what you're going through -- here are 12 books that would make great gifts.

These and other books can be found in our Suggested Reading section. I recently added new books about kratom and medical cannabis, along with a novel based on a true story about a pain physician whose reputation and practice were ruined by prosecutors.

Click on the book's cover to see price and ordering information. Pain News Network receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon.

Kratom Book by Katharine Gideon

In this beginner's guide to kratom, Katharine Gideon explains how the leaves of a tree that grows in southeast Asia have been used for centuries as a natural remedy to manage pain and depression. She explains the different strains of kratom and how they can be used in capsules, extracts, teas and powders to treat a variety of medical conditions.

Cannabis for Chronic Pain by Rav Ivker, DO

Dr. Rav Ivker is a family physician and holistic healer who learned about the pain relieving benefits of medical marijuana while treating his own severe case of shingles. He offers step by step instructions on the benefits and appropriate use of medical marijuana to treat arthritis, back pain, migraines, fibromyalgia and other chronic pain conditions.

Back in Control by David Hanscom, MD

Spine surgeon Dr. David Hanscom has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery. Hanscom shares the latest developments in neuroscience research and his own personal history with pain, which at one point led him to consider suicide.

Pain on Trial by J.Z. Gassko

J.Z. Gassko bases this novel on the true story of a well-respected doctor whose reputation and practice were ruined by overzealous prosecutors. The book describes the complex world of pain management and how the "relentless war" against opioid addiction impacts both patients and medical professionals.

Crooked: Outwitting the Back Pain Industry by Cathryn Jakobson Ramin

Investigative journalist and back pain sufferer Cathryn Jakobson Ramin spent six years looking at the pros and cons of surgery, opioids, chiropractic care, epidural steroid injections and other types of treatment for back pain. Her conclusion? You're better off with a structured exercise program. 

The Painful Truth by Lynn Webster, MD

Pain specialist Dr. Lynn Webster shares the inspirational stories of patients struggling with chronic pain, and examines the benefits and risks of opioid medication, the importance of caregivers, and how patients can have fulfilling lives even in the worst pain situations. The Painful Truth offers a path toward awareness, hope and healing.

A Nation in Pain by Judy Foreman

Award-winning health journalist Judy Foreman spoke with doctors, scientists, policy makers and patients for her sweeping account of the chronic pain crisis in America. Foreman examines possible solutions -- such as better pain education in medical schools -- and the misguided demonization of opioid medication and pain sufferers.

Drug Dealer, MD by Anna Lembke, MD

Stanford psychiatrist Anna Lembke -- a board member of Physicians for Responsible Opioid Prescribing (PROP) -- looks at the origins of the opioid epidemic and the role played by drug makers in promoting the use of opioid pain medication. Lembke says the healthcare system is broken and focuses too much on pills, procedures and patient satisfaction over wellness.

The Opioid-Free Pain Relief Kit by Beth Darnall, PhD

Pain psychologist Beth Darnall offers ten simple steps to relieve pain without the use of opioids, including ways to "quiet" pain through meditation and stress reduction. The book includes an innovative 20-minute CD that uses binaural sound technology to help listeners relax and "deamplify" pain signals.

No Grain, No Pain by Peter Osborne

An expert on gluten sensitivity and food allergies, Dr. Peter Osborne explores how a grain-heavy diet can cause chronic pain by triggering an autoimmune system response. He offers a 30-day, grain-free diet plan to help readers "heal yourself from the inside out."

Noah the Narwhal by Judith Klausner

Author Judith Klausner, who grew up with chronic migraines, wrote this children's book to help kids cope with headache pain. It tells the story of Noah, a narwhal whale, who suffers from daily bouts of chronic pain. “My head feels like it’s full of sea urchins," Noah says.

Paindemic by Melissa Cady, DO

Osteopathic physician Melissa Cady believes opioids should not be a first-line treatment for chronic pain, and that there are many other unnecessary and risky interventions that provide little benefit. She advocates an "antiPAIN lifetstyle" that focuses initially on physical therapy and exercise.

ER Safety Tips for Ehlers-Danlos Syndrome Patients

By Ellen Lenox Smith, Columnist

People living with Ehlers-Danlos Syndrome (EDS) are often afraid to go to a hospital emergency room, due to a lack of understanding in the ER staff on how to safely care for them. I myself recently had another negative experience, one that almost killed me.

In the process of being admitted, after passing out over and over due to low blood pressure, things went terribly wrong. While being transferred from the ambulance to the hospital stretcher, my hip was dislocated. This dislocation was unintentional, but avoidable, as it was a direct result of the rough manner in which the transfer was managed.

On top of this, they gave me no IV fluids for several hours, which should have been the first thing done to help elevate my blood pressure. Complicating matters even further, no food was brought to my room that I could safely eat and metabolize for the two days I was there.

And then, when a nurse thought I had stopped breathing, she compressed my chest to stimulate my heart, even though I was wearing two medical bracelets warning I shouldn’t be given chest compressions. Three months later, I am still paying for these mistakes.

As a result of my traumatizing and life threatening experience, I sent a letter to the hospital in the hopes of never having another EDS patient experience what I did. I was shocked to receive a call that resulted in the hospital taking me up on my offer to meet with their doctors and nurses to help them understand how to properly handle us.

To prepare for this meeting, I asked other EDS patients to submit suggestions to enhance my program. I hope that this list will be helpful to both patients and hospital staff.

How to Treat Ehlers-Danlos Patients

• Consider having a generic EDS protocol for staff to get a quick understanding of this condition with new patients.
• Put notes or a bulletin board or patient chart to share information and keep the patient safe from shift to shift.
• Be cautious, for EDS is an “invisible condition” so remember to do no harm. Understand that touching and moving us can create more problems, so listen to the patient. Tread lightly using chest compressions, because our ribs sublux, dislocate and break easily. Allow EDS patients to position themselves safely before any procedure.
• Subluxations are a real thing. Don't just take a quick x-ray and tell us, "It's nothing, you're fine.” When a joint feels wrong, there's an injury worth finding some relief for.
• Because we bruise easily, don’t rush to judgement with EDS children before reporting abuse.
• If someone arrives with an ID warning bracelet, please read and respect what is says!
• If a patient has low blood pressure, elevate their bed to a 30% angle. Hook up IV fluids quickly and approve the patient’s BP medication in time for their next dose. Consider using a PICC line if the IV does not hold.
• Many EDS patients are drug reactive, so respect if a DNA drug test has been done or listen to what medications have not worked in past. Pain relief is difficult to achieve with EDS so please believe the person.
• Some of us use compounded medications that need to be accepted in place of what you have in stock in the pharmacy. Some also use supplements, so please respect the use of them. Many are using the Cusack Protocol supplement routine.
• If a patient is using cannabis for pain control, consider allowing CBD use in the hospital in an oil, tincture, topical or pill form.
• Many of us are food reactive, so send your dietician to the room to meet the patient and create a safe meal plan.
• If a patient sleeps with CPAP or BPAP mask, be sure that it gets brought in and worn during sleep.
• Have on staff a physical therapist that can use manual energy techniques for re-alignment or allow an EDS manual therapist on the floor.
• If there is a need to draw blood, use a butterfly or small pediatric needle.
• If there is a need for intubation, be careful with movement of the neck and use small equipment. If an EDS patient presents with a neck fusion, do intubation using the fiber optic glidescope.
• If stitches are needed, try to using natural products over synthetic.
• Many of us have wound healing issues, so please be careful with the choice of tape and its removal. Some of us have skin that is fragile and easily tears.
• All types of EDS are at increased risk for scary vascular events. Any sudden or severe chest or abdominal pain needs a scan to rule out an aneurysm or another serious condition.

If surgery is needed, be sure to have your anesthesiologist do a pre-op interview before any procedures. Be careful about joint positioning and manipulation when performing anesthesia. Yes, that "jaw thrust maneuver" may make intubation easier or more comfortable, but it's not worth the months of rehab from a dislocated jaw.

Please reassure your orthopedic residents that we'd prefer to avoid surgery, too. Having them share their fears out loud that they don't want to operate on EDS patients because “that'll just make things worse" may be true, but it's not helpful. Nobody wants to feel like an untouchable leper. Instead, please focus on what you can do to help. It might be as simple as helping to reposition the joint to a more neutral spot, and then bracing or splinting it there to give things a rest before starting physical therapy

Ehlers-Danlos can be a very painful, isolating and heartbreaking condition to live with. We would love to come to a hospital for emergency help and not be afraid to be sent home in worse shape. Let’s all work to educate the medical field and improve the future for us all coping with this condition. May this list be a start for you!

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their 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.

12 Myths About Opioid Pain Medication

By Ryle Holder, PharmD, Scott Guess, PharmD, and Forest Tennant, MD, Dr. P.H.

Myth #1: Above 100mg of morphine equivalence, opioid pain medications are ineffective. NONSENSE! They have no ceiling in most patients and may remain effective at dosages in the thousands.

Myth #2: All pain patients who take over 100mg of morphine equivalence are diverting or selling part of their prescription allotment. NONSENSE! Most patients who have a bad enough pain problem to need this much opioid don't usually want to part with it.

Myth #3: All patients who use the "Holy Trinity" of an opioid, benzodiazepine, and muscle relaxant are either selling their drugs or will shortly overdose. NONSENSE! The original "Holy Trinity" was a simultaneous ingestion of a combination of the short-acting drugs hydrocodone (Norco), alprazolam (Xanax), and carisoprodol (Soma). A different, long-acting drug from either of these 3 classes (opioid, benzodiazepine, muscle-relaxant) markedly lowers the risk. So does taking the drugs separately.

Many severe, centralized pain patients have to take a drug from the 3 classes and do it safely and effectively. In other words, they take the drugs "as prescribed."

Additionally the “Holy Trinity,” originally called the “Houston Cocktail,” is a term coined by law enforcement. Addicts tend to use monosyllabic terms to refer to their poison of choice; “Holy Trinity” has too many syllables.

Myth #4: Centralized, intractable pain doesn't exist. NONSENSE! Much research documents that pain from an injury or disease may cause glial cell activation and neuroinflammation, which may destroy brain and spinal cord tissue. Multiple, high dose drugs may be needed to prevent tissue damage and control the immense pain that this condition may produce. As inflammation develops, the overall stress on all organ systems increases dramatically, occasionally to a life-threatening level.

Myth #5: The risks of an opioid dosage over 100mg of morphine equivalence are too great to prescribe opioids above this level. NONSENSE! If a severe, chronic pain patient can't find control with opioid dosages below 100mg or with other measures, the benefit of the high dose far outweighs the risks.

Myth #6: Overdoses occur even if opioids and other drugs are taken as prescribed. NONSENSE! If this even happens, it is extremely rare. Overdose victims often take alcohol, marijuana and other drugs in combination, but opioids and the prescribing doctors are always blamed.

Myth #7: There are no "proven" benefits to long-term opioid therapy. NONSENSE! Simply talk to someone who has taken them for 10-20 years. Never has there been, nor will there ever be, a double-blind, placebo-controlled study to provide "evidence." Opioids are a last resort when all else fails. Opioids in doses >100mg have improved quality of life and prevented death in some instances.

Myth #8: Chronic, severe or intractable pain is just a nuisance that doesn't warrant the risk of opioids. NONSENSE! Severe pain has profound detrimental effects on the cardiovascular, immune, endocrine (hormone) and neurologic systems. Pain must be controlled or pain patients may die of stroke, heart attack, adrenal failure or infections due to a suppressed immune system.

Myth #9: Genetics has no effect on the need for a high opioid dosage. NONSENSE! Bigger and heavier people need a higher dose of medications (just add 1 drop of food coloring to a 1 gallon bucket and then a 5 gallon bucket and observe). It is well documented that some genetic variations impede opioid metabolism to the active form of the drug, or increase the speed the body excretes the opioid. Both metabolic variations will require a higher dosage.

Myth #10: All pain patients can get by on standard opioid dosages under 100mg. NONSENSE! There are persons who are outliers with all disease conditions such as heart failure, diabetes and asthma. Same with pain. A few unfortunate individuals will always require high dosages. Remember our friend the bell curve? What if YOU were on the extreme end?

Myth #11: All patients started on opioids some time ago can just suddenly stop opioids. NONSENSE! Once a person is on high dose opioids they don't dare suddenly stop, because sudden withdrawal may cause hypertension, tachycardia, adrenal failure, and sudden heart stoppage. Some patients who have stopped too suddenly have committed suicide because they had no way to control pain. Montana reports that 38% of all suicides in the state are pain patients, many of them undertreated.

Myth #12: There are plenty of alternatives to opioids. NONSENSE! Common pain problems are generally mild to moderate and respond to a variety of non-opioid treatments. Unfortunately, there are some severe, intractable pain patients who can only control their pain with opioids.

Forest Tennant is a pioneer in pain management who operates a pain clinic for intractable pain patients in West Covina, CA. His clinic was recently raided by DEA agents.

Ryle Holder is a Georgia pharmacist and patient of Dr. Tennant. Scott Guess operates an independent pharmacy  and clinic in Atascadero, CA that specializes in pain management.

This column was distributed by Families for Intractable Pain Relief, a project of the Tennant Foundation.

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 to Fight Step Therapy

By Barby Ingle, Columnist

With opioid medication becoming harder and harder to obtain, I want to put out some reminders of other access to care issues that we have had for many years. These challenges can’t be overlooked as we combat the fake news media on the opioid crisis and the lack of news coverage of the chronic pain epidemic.

Health insurance companies often find ways to delay or deny pain care, using step therapy, prior authorization, medication claw back, and poorly run clinical trials to keep their own costs down.

Step therapy is a tool that insurers use to control spending by requiring patients to try certain medications first before using more expensive drugs to treat whatever ails them. These “fail first” requirements mostly affect the care of chronically ill patients. Studies show that nearly 60% of commercial insurance companies use some form of step therapy. And three out of four large companies offer employees insurance plans that use step therapy practices.

Requiring patients to try less effective medication delays access to the best treatment and allows some diseases to progress. This lack of proper and timely care denies patients the drugs they need when they need them, and allows insurance companies to practice medicine without a license.

Many patients can’t afford to wait or forgo needed medications. As these patients physically deteriorate, it only adds to future healthcare costs and increases the risk of non-compliance and self-medication.

Currently there are laws protecting patients from step therapy in over a dozen states, including California, Connecticut, Iowa, Illinois, Indiana, Kentucky, Louisiana, Maryland, Missouri, Mississippi, New York, Washington and West Virginia. But even in these states, there are often holes in the law that need to be addressed. In California, for example, the law only relates to fail first exceptions and uniform prior authorization forms.

Various groups such as the New Mexico Fail First Awareness Coalition, Minnesota Coalition on Step Therapy, Illinois Pain Alliance, Indiana Pain Alliance, International Pain Foundation, Kansas Affordable Access to Medication Coalition and others are working on pending legislation to stop step therapy practices in Florida, Georgia, Massachusetts, Maine, Minnesota, New Mexico, Ohio, Oregon, Rhode Island, Texas, Utah and Virginia.

There is also a step therapy bill in Congress sponsored by Rep. Brad Wenstrup of Ohio called the “Restoring the Patient’s Voice Act of 2017.” It requires insurers to have a clear and speedy process for patients to request an exception to the step therapy protocol.  In cases where the life and health of a patient are jeopardized by step therapy, the request must be granted no later than 24 hours after it is received.

For all of these state and federal efforts, the pain community needs patients to share their stories of how insurance practices have harmed them or denied them medication that is helpful.

What can you do? If you have already experienced step therapy and found it delayed your care, I suggest you speak out about the impact it has had on you. Talk to your congressional representatives and let them know how it has affected you.

An easy way to do this advocacy work is to call 1-844-872-0234 and wait for the automated message. Press 1 and enter your 5-digit zip-code. This will connect you to the office of a U.S. senator for your state. After the call concludes, it will automatically connect you to your other senator and then your representative in the House. Sometimes a live person will answer or you could be instructed to leave a message.

Craft a personalized message, such as “Good morning. My name is (name), and I am a constituent from (city, state). I am a chronic pain (patient, caregiver, family member or provider). I am asking for your support to help the pain community by supporting step therapy legislation for people in pain living in our state. Thank you.”

It is a simple way to become an advocate and make a difference. I hope that you will find it in you to be a cheerleader of hope, and fight for access to proper and timely care for yourself and others in the pain community.

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.

When Is Pain Not Pain?

By Carol Levy, Columnist

“Pain is not pain.” So says my new pain management doc. And he's right.

My main pain right now, the pain that keeps me disabled with trigeminal neuralgia, is from eye movement. Anything that requires sustained eye usage for more than 15 minutes results in horrific pain.

If I tell myself (what I think most of us tell ourselves when we are doing what we know will hurt later) just five more minutes, just four more emails or just one more chapter; I end up with horrific eye pain and become nauseated.  It is all I can do to walk the 20 steps to my bedroom and lie down.

It can get so bad that I often end up laying on my bed for 2 to 3 hours; working to not move my eyes and forcing them to stay completely still, an almost impossible task. I wait and wait, and wait some more, for it to calm down.

“Oh my God!” I cry out to my empty apartment. “The pain is so bad. I don't know what to do!”

Sometimes pain meds help by taking the edge off, but the wait for them to kick-in is excruciating. “When will this stop?” I demand to the air. “Why can't someone fix this for me!”

The answer never changes. Total silence.

My new pain management specialist starts appointments with the question we all know only too well: “What does the pain feel like?”

I think about it.  I visualize how my eye feels and what physically happens when it is bad.

“It feels like pulling against the skin and a pushing of the eye against the lids, sometimes burning. Sometimes, it feels like if I could just shut the eye hard enough, which I never can, that would help,” I tell him.

After all those words, I realize there is one word I have not used: Pain!

We all know what pain is. It's the feeling you get when you break a bone, stub your toe, cut yourself, or eat ice cream against a bad tooth. That is what most people think of as pain.

What I feel, what many of us in chronic and intractable pain feel, is not “pain.” Not in any normal or accepted sense of the word.

Why do we not see new pain treatments, outside of the usual drugs and opioids?

It could be because the medical and research community is not studying or addressing our pain.

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.

Can Kellyanne Conway Solve the Opioid Crisis?

By Mark Maginn, Columnist

U.S. Attorney General Jeff Sessions announced last week that White House counselor Kellyanne Conway has been appointed to lead initiatives in the Trump Administration against the opioid crisis currently sweeping the country.

That’s right, President Trump’s former campaign manager and spinner of alternative facts has become the new “opioid czar” – although she is generally thought of inside and outside of the Washington beltway as someone as little acquainted with facts as her employer. 

Appointing a political shill who cares nothing about facts to such a high profile position strains credulity and places millions of pain sufferers and their doctors in jeopardy of more harassment and arrests.

KELLYANNE CONWAY (GAGE SKIDMORE PHOTO)

Ms. Conway is a professional resident of what candidate Trump called the “swamp” he pledged to drain. And now this denizen of the Capital’s reptilian power structure is to be in charge of initiatives alleviating the opioid epidemic. 

This is a position that requires the ability to gather experts together in order to devise wise and humane policies to help those in terrible pain and those who become addicted to opioid drugs such as OxyContin and, of course, heroin.

To add gravitas to the strained credulity of this outrageous appointment, we have none other than “opioid policy expert” and the founder of Physicians for Responsible Opioid Prescribing (PROP) weighing in.

"It is a positive sign. She is a high-profile figure in the administration, showing the administration takes this seriously,” Dr. Andrew Kolodny told BuzzFeed.

It appears that in Kolodny’s brand of myopia, possessing a “high-profile” is evidence of seriousness. Kolodny perpetuates the notion that notoriety equals intellect, organizational ability and tact.

Those who applaud this sad appointment apparently do not take this so-called opioid epidemic with anything approaching the seriousness it requires. Conway’s appointment will likely lead to more of the same stupid drug policy of harassing pain doctors and jailing patients desperate for pain relief. No serious policies can be expected.

For example, after nearly a year in office, the Trump administration has failed to name anyone to head the White House Office of National Drug Control Policy. It also has yet to fund or propose a strategy for the overdose crisis, which President Trump declared a public health emergency in October. Does this look like an administration serious about the causes and treatment of drug addiction and drug overdose deaths?

Conway’s lack of candor and veracity is likely to lead to disastrous policies affecting millions of us. 

She infamously coined the phrase “alternative facts” in defense of then-Press Secretary Sean Spicer’s false statements about the size of the crowd at Trump’s inauguration. Conway later defended the President’s travel ban on mostly Muslim countries by making reference to the “Bowling Green Massacre.” She cited this fictitious terrorist massacre as evidence in support of the president’s travel ban on Muslims. 

The use of lies and half-truths by Conway should have been enough to disqualify her.

Can we believe that Conway will look to the ravages of poverty, the destruction of good middle class jobs, the collapse of education, the increasing wealth gap, and the epidemic of loneliness that I see in my office daily with patients suffering from various forms of depression and despair? No, certainly not. That would require long term financial commitment to jobs, healthcare, education, and housing.

Our current War on Drugs has led to the incarceration of millions of Americans of color. We now have more of our citizens in prison than any other nation. Yet Attorney General Sessions has created a new unit in the DEA that is solely charged with “investigating and prosecuting health care fraud related to prescription opioids.”

This indicates more law enforcement and pressure on doctors prescribing opioids for those of us who depend on these medicines simply to live. That is exactly the wrong policy. 

People of privilege like Ms. Conway and her boss, our President, are not capable of looking beyond their own wealthy horizons and seeing the lonely precincts of a depressed and despairing nation.

We need real, clear-eyed and honest people to bring us real, clear-eyed and honest help.

Mark Maginn lives with chronic back pain. He is a licensed mental health and social worker who spent 18 months working in New York City with survivors of the 9/11 terrorist attacks. Mark now has a private practice in psychotherapy in Chicago, where he specializes in working with people in intractable pain. 

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.