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.

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.