March 29, 2018

4 Alternative Therapies That Help Lower Pain Levels

March 29, 2018/ Pat Anson

By Barby Ingle, Columnist

This is the 11th month of my series on alternative therapies for chronic pain management. As I have stressed month after month, each of us is different, even if we are living with the same diseases. No one treatment works for everyone. We must find creative and effective ways to get our pain levels lower.

This month I am shining a spotlight on four treatments that may help you or your loved one in chronic pain: Quell, radiofrequency ablations, reflexology and sonopuncture, also known as sound therapy. I have tried all four of these treatments with varying degrees of success.

Quell

Quell is a wearable medical device that uses electric nerve stimulation to deliver relief from chronic pain. I have tried this device and passed it on to some of my friends with back, arthritis, nerve, leg and foot pain. For me, the relief was not as significant as I had hoped, but I have a friend who has used it daily for a year and swears that it helps her leg pain.

NeuroMetrix, the maker of Quell, designed the device to be worn on the upper calf muscle. It was small enough to wear under my sweatpants and not too big or bulky to get in the way. The device sends neural pulses through the central nervous system to the brain to trigger the body’s own pain blockers. It has a variety of stimulation patterns and sleep modes, and the intensity of therapy can be adjusted through an app.

If you have tried a TENS unit or Calmare and gotten some relief, this might be a successful tool to help you manage your pain. A Quell starter kit costs $249. Each unit comes with the device, leg band, two electrodes and charging cords. You have to replace the electrodes about every two weeks with normal use, but the battery is rechargeable.

I believe Quell is an option that is worth looking into and they have a 60-day moneyback guarantee if it doesn’t help you.

Radiofrequency Ablation

Radiofrequency ablation (RFA) uses heat to stop the transmission of pain. Radiofrequency waves “ablate” or burn the nerve that is causing the pain. The nerve stops sending pain signals until it regrows and heals from the ablation. RFA is most commonly used to treat chronic pain caused by arthritis and peripheral nerve pain.

I had RFA procedures 36 times from 2005 to 2008. It never took my pain away but did lower my pain levels and helped take the edge off. The doctor performed them on the ganglion nerve bundle in my neck. My insurance covered the procedures and it was helpful in keeping the need for high dose pain medications down.

RFA procedures are typically done in an outpatient setting under local anesthetics or conscious sedation anesthesia. The procedure is done under guidance imaging, like a CT scan or by ultrasound machine, by an interventional pain specialist.

RFA is said to help in treating the desired nerve without causing significant collateral damage to the tissue around where the ablation is performed. Still, a patient should take precautions and understand that the ablation can cause trauma or injury to the body, and conditions such as CRPS or arachnoiditis can be exacerbated long-term with this treatment.

When I was having RFA, it was one of the only options I had access to. Once less invasive options became available to me, I opted to stop these and nerve blocks all together.

Reflexology

Reflexology involves the application of pressure to the feet and hands with thumb, finger, and hand techniques. Reflexology is very relaxing and calming for me but there is no consensus among reflexologists about how it works, and some technicians are better at it than others.

Practitioners believe that there are specific areas in the hands and feet that correspond with organs in the “zones” of the body. There are five zones on each half of the body that reflexologists work on. In theory, they help stimulate blood flow and better blood flow leads to better working organs and muscles

The research on reflexology is skimpy and it has not been proven as an effective treatment for any medical condition. It’s more of an approach to health lifestyle living, which can be of benefit to pain patients. This can help lower blood pressure and relax a pained body by taking the edge off.

I can say reflexology did seem to help with my constipation issues, but I was doing it while taking OTC and prescription strength medications, as well as stretching and stomach massages.

Sonopuncture

Sonopuncture is also known as vibrational or sound therapy. The idea behind it is similar to that of acupuncture, although instead of needles they use sound waves. Sonopuncture practitioners believe that sound waves stimulate the body into healing.

Sonopuncture was recently highlighted on an episode of “Keeping Up with the Kardashians” when Kendall Jenner was going through some anxiety challenges. I have used sound therapy myself to help with the stress of living with chronic pain and find it relaxing and mentally therapeutic.

Typically, the patient lays down in a comfortable position on the floor or a massage table. The practitioner will used tools like a tuning fork, glass bowls, chimes, metal or electronic devices that emit harmonic sounds or vibrations on acupressure points for about a minute each.

This is a noninvasive therapy and is suitable for all ages. Since no needles are involved, it could be seen as an alternative to acupuncture. With one in four patients afraid of needles, this could be a great way to calm your nerves and mind to help manage the challenges of living with chronic pain.

If you are considering any of these alternative treatments, I encourage you to first talk with a medical professional who is familiar with your past and present care and can help you discover what would be appropriate 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 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.

March 26, 2018

Doctor Shopping Has Always Been Rare

March 26, 2018/ Pat Anson

By Roger Chriss, Columnist

A commonly cited factor in the opioid crisis is "doctor shopping" -- the act of seeing multiple physicians in order to get an opioid prescription without medical justification. States like Indiana are passing prescribing laws with the specific goal of preventing doctor shopping in an effort to address the opioid crisis.

However, doctor shopping has not at any time in the past decade been a statistically significant factor in the opioid crisis. The National Institute of Drug Abuse tells us that only one out of every 143 patients who received a prescription for an opioid painkiller in 2008 obtained prescriptions from multiple physicians "in a pattern that suggests misuse or abuse of the drugs." That’s a rate of about 0.7 percent.

The importance of doctor shopping over the last decade was not because of frequency -- it has more to do with quantity. Research shows that the 0.7% of people who doctor-shopped were buying about 2 percent of the prescriptions for opioid medications, constituting about 4% of the amount dispensed.

Moreover, these doctor-shoppers tended to be young, to pay in cash, and to see five or six prescribers in a short period of time, so they are easily identifiable and can be thwarted with prescription drug monitoring programs (PDMP’s).

Diversion prevention had long been seen as important. Back in 1999, the Drug Enforcement Administration published “Don’t Be Scammed by a Drug Abuser,” which included advice to doctors and pharmacists on how to recognize drug abusers and prevent doctor-shopping. And states like Washington specifically list doctor shopping among the indicators of opioid addiction in prescribing guidelines, making recognition and intervention key goals for prescribers.

These efforts have paid off. A study in the journal Substance Abuse found that the number of prescriptions diverted fell from approximately 4.30 million (1.75% of all prescriptions) in 2008 to approximately 3.37 million (1.27% of all prescriptions) in 2012. The study concluded that “diversion control efforts have likely been effective.”

Similarly, Pharmacy Times reported a 40% decrease in doctor shopping in West Virginia between 2014 and 2015, thanks in part to efforts by that state’s Board of Pharmacy Controlled Substance Monitoring Program.

The Inspector General of the Department of Health and Human Services found in 2017 that among 43.6 million Medicare beneficiaries, only 22,308 “appeared to be doctor shopping.” That’s a minuscule rate of 0.05 percent.

“You have this narrative that there are these opioid shoppers and rogue prescribers and they’re driving the epidemic, and in fact the data suggests otherwise,” says Dr. Caleb Alexander, who co-authored a 2017 study in the journal Addiction.

"The study found that of those prescribed opioids in 2015, doctor shoppers were exceedingly rare, making up less than one percent of prescription opioid users,” Alexander told Mother Jones.

Doctor shopping is still a problem in other contexts. Opioids are not the only class of medication that people seek to obtain illicitly for a variety of reasons, from hypochondriasis to malingering. PDMPs and other law enforcement efforts have a useful role to play in addressing these issues, and the opioid crisis requires ongoing efforts to prevent drug theft and diversion at all levels of the supply chain.

But claims that doctor shopping is a significant factor in the opioid crisis are mistaken. Doctor shopping was not significant in 2008, and measures to reduce diversion have succeeded, making doctor shopping in 2018 that much rarer.

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.

March 25, 2018

How I Started Telling People I Have EDS

March 25, 2018/ Pat Anson

By Crystal Lindell, Columnist

One of the first people I told about my new Hypermobile Ehlers-Danlos syndrome (hEDS) diagnosis was a local politician.

I was still trying to get a feel for how the letters EDS tasted on my lips. How they felt in my breath. How people would react when I said them. And truth be told, this was when doctors were telling me I probably had it, but before I was officially diagnosed — that came later.

He didn’t know he was among the first people I told — that he was a test case. But there we were, at a local Democrats meeting and he asked me about medical marijuana, and I decided to go for it.

“I actually have EDS,” I said. “My thumb touches my wrist, want to see? Yes, marijuana should be legalized. No, it won’t help everyone.”

He had the response most people seem to have.

“Maybe it will get better?”

“It won’t get better,” I told him.

“Yeah, but maybe it will! Once, I was sick and then I got better. So maybe you will get better.”

“It won’t.”

I get it. Nobody wants to really understand that being born in the wrong family is enough to sentence you to a lifetime of weak ankles and debilitating pain. It’s hard to understand that. It’s hard to accept that. It’s a lot easier to believe someone might get better.

It’s been hard for me to accept that. And harder still to say it out loud.

I have found though that it feels easier to lay the news on random acquaintances. The Tinder guy I met once. The woman who expertly bleaches my hair at the over-priced salon. The clerk at Walgreen's ringing up my pain medications.

There’s something to be said for telling random strangers something so overwhelming. It greatly reduces the consequences of your words — and of their reaction.

My initial instinct was to tell the people closest to me, my inner circle, first. But that quickly become completely overwhelming. Those people care way too much about me. They take it way too hard. It cuts too deep.

No, strangers are much better. They are morbidly impressed with my thumb to wrist trick. They are able to distance themselves from the depressing, long-term aspects of the diagnosis and ask horrifically, wonderful mundane questions like, “What does EDS stand for?”

And they never stop to think about what it might mean for my future. That’s my favorite part. Because the future looks very scary right now. And I need to do my best to stay in the present.

I have forced myself to pepper in the tougher conversations with the people who care about me. The late-nights over tears with my best friend wondering what this might mean for my future. Asking things like, what if I can never kids? And even if I can, do I want to risk passing it on to them?

Will I need assisted care sooner than most? How will I ever explain my health to future lovers? Why did it take so excessively long to get the diagnosis? How much of my life was wasted waiting for it? What could have been different if only I had known sooner? Will my siblings need to be evaluated? And what happens if they have it too?

All the things that fill me with grief and despair if I let them.

But strangers never ask questions like that. And even if they do, they don’t actually care about the answers that much. And I love that about them.

Eventually, hopefully, it will just become one more things about me. I’m blonde, I don’t like Trump, I love Burn Notice, I eat too much Taco Bell, and I have hEDS. It’s part of who I am, but not the whole part, or even the most important part. Just another casual fact in my Instagram bio next to things like, “I like lipstick.”

And no, I won’t actually ever getter better, but eventually, hopefully, I’ll get better at having hEDS and telling people about it.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS.

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.

March 20, 2018

A Nightmare Experience With Surgery

March 20, 2018/ Pat Anson

By Rochelle Odell, Columnist

I have been warning my “healthy” family and friends that the opioid epidemic and the backlash against prescription opioids would affect them at some point. My recent nightmare of a surgery may prove that the time may now be at hand.

On February 2, I underwent what normally would be minor surgery to remove a catheter -- called a portacath -- that had become dislodged. For patients with Complex Regional Pain Syndrome (CRPS), there is no such thing as a minor procedure and my experience became a prime example of what could go wrong.

My friend Debbie drove me to the hospital where the surgery was performed. I have undergone over 40 procedures for CRPS and I always become apprehensive, as any patient facing surgery should be. I told Debbie I did not have a warm toasty feeling about the surgery. I was frightened, a feeling I don't usually experience. But this time I did.

Before I was taken back to pre-op, Debbie asked me if I would like to pray. Thankful for the thought, I responded yes. It did not alleviate the feeling of dread nagging at me, but I hoped God would protect me.

Once in pre-op, the nurse went over my extensive allergy list. Believe me, it's long. I am allergic to almost all antibiotics, including penicillin, along with some opioids like Demerol and methadone, as well as aspirin and NSAID's. Betadine causes blisters and a horrible rash. I’m also allergic to most medical tape, including cloth, plastic, silk and paper tapes. The only one I can tolerate is Hypafix. It's a soft adhesive that allows the skin to breathe. I was very vocal about that.

The nurse asked what kind of surgery I was about to undergo and why. I told her it was because I don't have any good veins, never have, and that a catheter was a necessary evil. Without one, if I were to pass out or become very ill, dying could be a real possibility.

I told her she would only got two tries for the IV line I would need for surgery. I am not a pin cushion and multiple needle pricks could cause a major pain flare. She started the IV on the second try.

The surgeon and anesthesiologist then came to see me. I explained how nervous I was and that I honestly was very close to walking out. I should have done that. I could tell the surgeon had no clue what CRPS was or how to treat me post-op. That is not unusual, a lot of doctors have no clue what it is, and that extra steps are needed to keep a major pain flare from happening.

Even the anesthesiologist seemed clueless about CRPS. I thought that odd, since anesthesiologists are often pain management physicians. He kept telling me don't worry, once in the operating room I would be out soon.

Four hours later I was taken to the operating room. I told the anesthesiologist that I forgot to add fentanyl to my allergy list. It gives me a smothering feeling and can't breathe. I also told him I wanted an LMA mask, because being intubated causes my asthma to flare. He told me he would use the mask, but he wanted to use fentanyl and that if I stopped breathing he would intubate me.

What is wrong with this explanation? Use something other than fentanyl and you won't have to intubate me. I also asked the surgeon to place me on IV antibiotics, as I have a long history of staph and MRSA infections.

Upon coming out of anesthesia, my throat was killing me. I knew he must have intubated me and used a drug I didn't want. The pain was excruciating. I was given small doses of Dilaudid and oxycodone, which did absolutely zip for me.

They also gave me IV Tylenol. Really, Tylenol post-op in a CRPS patient? The recovery room nurse was trying to console me as I was in tears. Any nurse I dealt with said they were trying to make sure I didn't die of an opioid overdose. That took the cake, the minuscule doses I received were obviously not working, so an opioid overdose certainly would not happen.

One nurse told me my pain was emotional pain. I should have screamed at her to get away from me, but I was in so much pain I couldn't think clearly. I was kept for observation overnight, which brought more problems and the realization that the very thing I warned my healthy family and friends about was indeed at hand.

What kind of pain control do patients get now after surgery? My surgeon was responsible for ordering all my meds, but how is a man who has no clue what CRPS is going to manage my pain? A man I had only seen one time before the surgery.

My RN was very sweet, but she too was stating what I think must be the hospital's policy. They do not want to provide opioid pain management. Everyone is so convinced the opioid epidemic was and is caused by prescription opioid medication. It dawned on me, ignorance is alive and well and it must be contagious.

My ordeal continued to worsen. I looked at my surgery sites. Not only were my upper chest and right arm covered in the tell-tale orange color from Betadine, but there was medical tape. A big painful and very itchy rash had developed.

My skin was driving me nuts. I asked the nurse to remove the tape and use non-stick pads and Hypafix, but she refused. Didn't anyone read my allergy list? Why ask for one if you are going to ignore it? The surgeon ordered Benadryl cream for my arm. It helped a little and I did get one injection of IV Benadryl, but that was it. I received less medication in the hospital than I was taking at home.

After a long painful night, I told the nurse I would refuse to see the surgeon. Anyone who causes a patient as much pain as he did is one I will not see again. The nurse said he had to see me in order to release me. I told her to tell him to have a different doctor release me, as I did not want to see him. I was livid. The morning I was released I removed the tape, as I could no longer tolerate it. She helped me cover the area with sterile gauze.

As soon as I got home I cleaned the surgery area thoroughly and made an occlusive dressing over the two surgical sites. The next morning my whole upper right chest was covered with tiny blisters and a nasty looking rash. My friend took pictures for me. The asthma flare I was afraid of was in full swing and I was running a temperature of 102. I could barely breath and my pain was completely out of control.

I had a temperature for three weeks, and six weeks later I am still coughing up yellow gunk. That could have easily been prevented, but what do I know, I am just the patient. Because I refused to see the surgeon for a post-op checkup, my primary care provider sent me a letter informing me I was trying to direct my care and was argumentative. He would only treat me for 30 more days and I needed to find a new primary care physician.

In the past I might have been upset with a letter like that, but since this opioid epidemic has affected me so negatively, I simply do not want to be seen by any physician who doesn't try to understand how sick I am. I was in so much pain. Wouldn't you try to direct your care at that point?

My ordeal has not ended. As of this writing, the whole port area and catheter tubing are swollen and look infected. Have I gotten it checked yet? Nope. I have literally been frozen in place by fear, a fear I have never experienced before. I know this will require more surgery to remove and replace the portacath. Just thinking about it scares me.

All of this could have been avoided if my allergy list had been read, if there had been adequate pain management, and if IV antibiotics had been started. If this is the future of medical care, I may reconsider seeing any doctor. It just isn't worth the stress and pain.

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

March 19, 2018

Prescription Opioids Rarely Lead to Heroin Use

March 19, 2018/ Pat Anson

By Roger Chriss, Columnist

A recent Politico column by three anti-opioid activists asserts that “opioid use disorder is common in chronic pain patients” and that the nation’s overdose crisis “stems largely from the overprescribing of opioids.”

Andrew Kolodny, MD, Jane Ballantyne, MD, and Gary Franklin, MD -- who are the founder, president, and vice-president, respectively, of Physicians for Responsible Opioid Prescribing (PROP) – also wrote that “many individuals become addicted to prescription opioids through medical or non-medical use, and then switch to heroin after becoming addicted."

This claim is an oversimplification of the tragedy that is heroin addiction. It both ignores the complex trajectory of drug use that culminates in heroin and omits the known risk factors of the people who suffer from heroin addiction. It also runs counter to the known data about various forms of opioid addiction, which clearly shows that most people on opioid therapy do not develop problems with misuse, abuse or addiction, and rarely move on to heroin.

The National Institute on Drug Abuse (NIDA) estimates that about 10 percent of patients prescribed opioids develop an opioid use disorder. And only about 5 percent of those who misuse their medication ever make the transition to heroin.

Further, the number of people addicted to prescription opioids -- about two million -- has been stable for over five years, while rates of heroin use have been rising, suggesting there is not a strong corelation between the two.

From 2002 to 2016, the number of Americans using heroin nearly tripled, from 214,000 to 626,000. Overdose deaths involving heroin also soared during that period.

The reasons behind this are complex and not fully understood. One theory is that heroin became more popular when prescription opioids became harder to obtain and abuse. According to a study by the RAND Corporation, the introduction of abuse-deterrent OxyContin in 2010 was a major driver in the shift to heroin.

Heroin use is also strongly associated with mental illness and childhood trauma. Studies have found that 75 percent of people with heroin addiction have another mental illness, with about half showing signs of psychiatric problems or post-traumatic stress disorder (PTSD) before age 16. At least half were abused or neglected as children, with especially high rates of sexual abuse.

In addition, it is well established in psychiatry that certain mental health disorders – such as borderline personality and bipolar disorder -- have a significantly increased risk of substance use.

Thus, heroin use and addiction is far more complex than just a result of opioid misprespcribing. Most people placed on opioid therapy do not misuse their medication, and the few who do become addicted rarely transition to heroin. Recent studies also suggest that more people are starting on heroin without prior exposure to other opioids.

Heroin addiction is most often the tragic outcome of a shattered childhood or mental illness, and not simply a result of medication exposure. To claim that heroin addiction stems largely from pain management is a disservice to both addicts and pain patients, and will only further the suffering of both groups by diverting attention from the real issues.

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.

March 18, 2018

My Arachnoiditis Family

March 18, 2018/ Pat Anson

By Elaine Ballard, Guest Columnist

I live in the rural county of Somerset in England, UK. At the age of 22, I had a sporting accident which eventually left me 80 percent disabled and unable to lead a normal life.

The accident caused several crushed discs in my spine and a great deal of nerve damage. Over the years multi-level disc degeneration set in, as well as osteoarthritis. I am unable to use a wheelchair, as bulging discs prevent me from sitting without severe pain. I am now 73.

Since 1994, I have been confined to lying on a bed in my living room and only leave home to keep hospital appointments. I travel by stretcher ambulance.

Just over two years ago I had an MRI scan which showed I had Adhesive Arachnoiditis (AA) and my life changed drastically yet again.

Arachnoiditis is listed as a rare neurological condition, but in fact many thousands of people all over the world have been diagnosed with it. There are also thousands of other people who have the same symptoms, but as yet, no diagnosis.

It is difficult for patients to get diagnosed as doctors are not trained to recognize this disease and often fail to even recognize the symptoms.

Arachnoiditis results from severe inflammation of the arachnoid membrane that surrounds the nerves of the spinal cord. It may cause stinging and burning pain, as well as muscle cramps, spasms, and uncontrollable twitching. The most common symptom is severe to unbearable neurological pain, especially to the nerves connecting to the lower back, legs and feet. This can lead to tingling, numbness, weakness and severe pain in the legs and feet.

Other symptoms include sensations that feel like insects crawling on the skin or water trickling down the legs. It can also affect the bladder, bowel and sexual function. Unfortunately for some, it may also result in paralysis.

As this disease progresses, the symptoms can become more severe or even permanent. Most people with Arachnoiditis are eventually unable to work and suffer significant disability because they are in constant pain. Pain is the most dominant factor and it is both chronic and acute. As the disease progresses, it can be relentless and unbearable and sadly suicide becomes an option.

Inflammation of the arachnoid membrane can lead to the formation of scar tissue, which may cause the spinal nerves to clump together and eventually adhere to the lining wall of the dura, the middle layer of the spine. The disease can then progress to Adhesive Arachnoiditis.

What Causes Arachnoiditis

There are a few different causes of Arachnoiditis. In the 1970's a dye used in myelograms was injected during spinal procedures directly into the area surrounding the spinal cord and nerves. The dye was too toxic for these delicate parts of the spine and was blamed for causing Arachnoiditis. This dye continues to be used in some parts of the world.

Bacterial infections and viruses in the spine can also lead to Arachnoiditis. So can complications from spinal surgery and invasive spinal procedures such as epidural steroid injections.

There is no cure for Arachnoiditis and there is little effective pain relief. This is a disease or condition for life. Opioids are offered by doctors, but are not specific to reducing neurological pain of this nature.

It is very sad and cruel that opioids are being clamped down in America and that Arachnoiditis patients are being classed together with people who seek drugs for recreational purposes. We are not drug seekers but desperate victims crying out for something that will stop this relentless and overwhelming neurological pain.

The Facebook support group Arachnoiditis Together We Fight has been an important part of my education in understanding this disease. I am thankful to say it has become more of a family, where members can come in and gradually feel at home while we bring education, support and encouragement. This family atmosphere and great support has saved many lives, as people first arrive feeling suicidal and lost in a medical world that will not help them.

That is why I wrote this poem to show people how important support groups can be and to bring more attention to this rare but life changing disease.

"The Family"

By Elaine Ballard

Lonely, fearfully I knock at the door
Arac greets me, a smile, so kind
I want to die, eyes keep to the floor
"Welcome" she says, but what will I find?

"Welcome" repeated again and again
"Good to have you!" Are you kidding?
"Family" really can it be true?
Lost, lonely, rejected... what you too?

I tell my story, they will never believe
"We understand, you're not alone"
Tears trickle down, I cannot believe
We are bound together by this dreaded disease

Files, inflammation, medication
Head's in a spin, where do I begin?
Then a hand upon my shoulder
Guides me to those precious folders

Questions answered, hope is rising
Found some friends, pain subsiding
Flares still come but under control
No longer afraid nor out in the cold

We need each other, your pain is mine
Strength in unity, love is the sign
Moving forward we are free
To Fight Together as one FAMILY

Elaine Ballard has written a book about Adhesive Arachnoiditis and how her Christian faith helped her through many difficult flares and times. It is called “The Furnace of Fire” and is available on Amazon. Click on the book's cover to see price and ordering information.

Pain News Network invites other readers to share their stories (and poems) with us. Send them to editor@painnewsnetwork.org.

March 16, 2018

Finding Out I Have EDS

March 16, 2018/ Pat Anson

By Crystal Lindell, Columnist

It turns out pain has been running through my veins all along. It has been a part of my bones since the day I was born. I just didn’t know it.

I have recently been diagnosed with something called hypermobile EDS, which is a subtype of Ehlers-Danlos syndrome. Basically, my connective tissue is weaker than it should be.

It explains why I spent the last five years feeling like the bones in my rib cage were cracked. It explains why my legs and arms are often painted blue and purple and shades of Army green with bruises from injuries I have no memory of. And it explains why my ankles gave way so often over the years that I ended up with an entire dresser drawer full of beige ankle wraps.

It also explains why everyone who ever loved me would describe me as clumsy. And why I got tendonitis at such a relatively young age. It explains my vision changes and my “bad veins” and my soft skin.

Readers have privately messaged me many times to get checked for EDS, but I thought it was too rare. I thought my doctors would think I was stupid or crazy for asking about it. And I didn’t think it ran in my family.

I was devastatingly wrong about all those of things.

And at every crossroad over the last few weeks, at every opportunity to find out that maybe I was overreacting, my worst fears were confirmed.

First by the osteopath, who asked if I could touch my thumb to my wrist, and when I showed her I could, said plainly, “Oh yeah, you could definitely have EDS.”

Then by my cousin, who herself has suffered from unexplained pain and health issues for years. When I asked if her doctors had ever thought she might have EDS, she replied, simply, "Yes, they have."

Next came my mom, who I tried to avoid involving in all this for as long as possible, because I knew it would be harder on her than it was on me to find out I might have EDS. As she sat on the couch across from me, she scrolled through the list of signs and symptoms on her phone and then abruptly stopped.

“I think my dad had this,” she said.

A revelation. An epiphany of the worst kind.

Her dad. The man who died when I was 3. The man everyone always said spent his life dealing with unexplained pain. The man I was haphazardly compared to whenever I popped pills. The man who I had no memory of. It was him. He was the link.

And then the dots just started connecting themselves. Like when you watch an eight-part Netflix show and it takes the characters until the very last episode to realize that the killer was in the house all along and you’re screaming at the TV to try to tell them, but they just don’t see it.

Then, finally, they see it.

It turns out his mom likely had EDS too. My mom’s grandma, and my great-grandma, Hazel. The family lore is that she was diagnosed with rheumatoid arthritis at 26 and spent most of her life miserable and in horrible pain. I have now discovered that her RA was probably, at the very least, an incomplete diagnosis.

When I talked to her son, my great-uncle, I expected him to prove me wrong. To say something that countered my suspicions. But he did exactly the opposite. The last year of her life the doctors had told him that her body was like a bunch of bricks and the cement holding them together was deteriorating. EDS explained with a construction metaphor.

Even more heartbreaking was that he said all they ever gave her for her pain was aspirin. That’s it. Aspirin. And it did not help.

I had been hoping -- since it was so long ago --- that they were more generous with the pain medications at the time. That they had gladly given her all the morphine she wanted. But, as with so many things lately, the opposite of what I believed was actually true.

I told my pain specialist at the university hospital in Wisconsin about all this. And until the very end I hoped he would prove me wrong. That he would accuse me of being hysterical. But instead, he said simply, “Ehlers-Danlos Syndrome is a possibility, based on your reports and my prior examination. Best bet would be for you to come in for a visit.”

And that’s when I knew. That was all I needed to finally understand that the killer was in the house the whole time.

“Ehlers-Danlos Syndrome is a possibility.”

It played over and over and over in my head. I let myself think for a second. There it is. Ehlers-Danlos Syndrome is a possibility.

I scheduled a visit for March 15. And this week, after spending about 45 minutes bending me like a Gumby doll, he confirmed it. I have hypermobile EDS – or hEDS for short.

I am fairly certain that all of those wonderful, strong people out there who live with EDS will know how devastated I am by all this. And how sad it makes me. I cannot talk myself out of the grief I have been feeling. Because now, not only will I likely never get better, the odds are high that I will get worse. There is no cure, only treatments that manage the symptoms. And physical therapy to prevent others.

All I can think about is the doctor at Loyola from the very beginning. The one I first saw with shooting pain in my wrists five years ago. The one I went back to a few months later hoping to find answers for the new pain in my ribs.

The one who looked right at me and said, “Please stop coming in. There is nothing I can do to help you.”

The one who could have found this so easily, if only he had taken the time to look for it. The one who pushed me into piles of medical bills and doctor visits and nights with unexplained pain because he thought I was making it all up. Or at the very least, overreacting.

I want to go back to his office and show him what I learned. I want to yell in his face, “IT’S EDS! I WASN’T BEING CRAZY! I WAS IN PAIN!! I NEEDED YOUR HELP!!!”

And then I want to cry. Again. Because crying seems like the only appropriate response to all of this right now.

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

March 13, 2018

Opioid Hysteria Has Gone Too Far

March 13, 2018/ Pat Anson

By Lisa Kehrberg, MD, Guest Columnist

I’m a 43-year-old physician who retired due to illness at the age of 39. I have a rare genetic disease called acute intermittent porphyria (AIP), an extremely painful and disabling condition.

Due to an enzyme deficiency, AIP causes toxins to buildup in the liver. The symptoms of porphyria are primarily neurological with the most notable being abdominal pain -- a burning sensation that is almost unbearable. The pain is similar to what I’d imagine it would feel like to have a blowtorch placed against my stomach and back.

Acute porphyria also causes peripheral neuropathy in the hands and feet. Along with the pain comes severe nausea, vomiting, headaches, fatigue, muscle weakness, motor neuropathy, and fluctuations in blood pressure and pulse. About 10 percent of AIP patients have a severe form of the disease referred to as “high excreter, recurrent attacks.”

Unfortunately, I am in that 10 percent.

Initially, I only had monthly attacks lasting 3-5 days, starting in my teenage years. Somehow, I managed to complete my education and training and became a physician despite that.

I was not finally diagnosed with AIP until the age of 39, when I suffered a life-threatening porphyria attack. It was almost too late for me at that point, as the attack was so severe that I was no longer able to work or do much at all. There is a one percent mortality rate during each AIP attack and I’ve had hundreds of them, so I’ve been lucky.

My older brother died unexpectedly at the age of 39. Genetic testing of autopsy samples later determined he had the same AIP gene mutation as I have. He died prior to my diagnosis and his gene mutation was discovered as I lay in a hospital bed being told my diagnosis.

At first, I felt such strong relief that my life was saved and sadness for my brother. But as the months passed, and I became sicker and more in pain, I started feeling a bit jealous of my brother. He was able to at least die with some dignity and is no longer suffering.

The pain that I experience is severe and the only thing effective enough to bring it down to tolerable levels is opioid medication. I’ve tried everything possible. Pain is a subjective experience and only the person experiencing it can know the severity and what helps to improve it.

I have difficulty understanding the response from some in the medical community, government, media and general public, who are so focused on “opioid addiction” that they are unable to see patients like me and empathize with us.

The media’s response has been extremely damaging. It seems people do not understand that addiction is a separate issue from pain management. Why is it that every time prescription pain medication is discussed, it's only in reference to addiction and the opioid epidemic? What about people like me who live with a life-threatening and severely painful disease? Not many reporters seem interested in that side of the story.

I have watched now as countless pain patients have taken their own lives due to discontinuation of their pain medication, often without any warning or consent. Physicians are not the problem in this. Physicians want to help patients. Physicians are being misled, brainwashed and even punished into thinking that prescription opioids usually lead to addiction.

Fortunately for patients like me, palliative care is a growing field and I’m so appreciative of my palliative care physician. I’m frightened for the future, not only for myself, but really for everyone. Pain affects everybody at some point in their lives. Whether it’s you, a family member or a friend -- pain will be there.

Everybody should be afraid of the direction where things are going. Even cancer patients at end of life are being denied appropriate pain treatments. Insurance companies are denying coverage for pain medications and getting away with it. I encourage everyone to please use common sense in this climate where the pendulum has swung too far in the wrong direction.

Lisa Kehrberg, MD, is a retired family practice physician who specialized in pain management. You can read more about Lisa at the American Porphyria Foundation’s website.

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

March 12, 2018

Tips for Surviving the Rising Cost of Healthcare

March 12, 2018/ Pat Anson

By Barby Ingle, Columnist

In my 20+ years as a chronic care patient, I have had over $1 million in medical bills. By the time I pass away, it may be nearing the $2 million mark for me.

Although insurance covered most of my healthcare costs, I’ve paid tens of thousands of dollars in out-of-pocket expenses and deductibles. Chronic illness can wipe you out financially. I had to sell my house to help pay the bills. Family and friends pitched in by hosting medical fundraisers for me.

This was before I realized that I was overpaying, that I could negotiate some prices, and that there were time savers and tools I could use to help keep costs down. Here are a few tips that I use to keep my medical expenses low.

Shop around for healthcare services. Use websites like Amino, BuildMyBod or Healthcare Bluebook to find out what your out-of-pocket costs are likely to be for an x-ray, lab test or doctor’s appointment. They can also help you choose an insurance plan that will cover the treatments you are most likely to need.

Many providers have cash prices for procedures or tests that are lower than what they charge insurers. I have even paid cash to a provider, submitted the insurance claim myself and received a full refund.

Had my provider submitted the paperwork, it would have cost me more out-of-pocket and my care would have been delayed waiting for a prior authorization.

When it comes to prescriptions, check for deals, coupons and if generic medication is available. Don't be afraid to ask. Many pharmacy chains sign contracts with pharmacy benefit managers (PBMs) that bind them not to tell a patient that the cash price would be lower, unless the patient asks first. This is known as a PBM clawback and it leads many patients to abandon their scripts because they don’t think they can afford to pick up the medication.

Pharmacies, manufacturers and coupon companies offer discount pricing that can save you significant amounts. Walgreen's has a prescription savings club, which can provide savings from $50 to over $100 on a 90-day supply of a medication. I primarily use Walgreen's, but if another pharmacy has a lower price for something like an antibiotic, I will go to them.

I also have my doctor sign my scripts “fill as written,” which can lower the cost of brand name medications run through my insurance card. Always check on how similar the generic is to the brand name. By law they only have to be 70% of the original formulation. The fillers used in generic drugs can vary, so things like time-released medication can work differently than the brand name. It’s important to check on this when looking at how much savings you can create. You want the generic medication to work just as effectively for you.

Walk-in clinics are becoming popular for routine care appointments. By my house there is an urgent care clinic and a Walgreen's clinic that offer online check-in so that patients can avoid lengthy waits. They call or send a text to let you know you are next, so you can head down and spend less time in their waiting room with other sick people. In major cities there are health fairs that offer free or low-cost medical services to uninsured and under insured patients.

I also utilize concierge providers through a monthly subscription. Anything the primary care provider can do in his office is included in the monthly fee, which if you pay quarterly or yearly will be even lower. Sometimes I don’t even have to go see the doctor, I can teleconference with him and he can just call in a script that I will get quicker and cheaper. I save the more expensive ER visits and specialty care for real emergencies like allergic reactions, broken bones, and other life-threatening situations I have had.

My final tip is the use of health apps that allow patients to check the prices of prescriptions, get discounts, print medical records, and store emergency information on your phone for paramedics to access. I like GoodRx and Needy Meds for finding the least expensive medications nearby. And I use HealthTune’s app for mindfulness music, which is a free streaming platform that offers scientifically researched music to support your health.

No matter what choices you make to save money, the more organized you are with your healthcare and medical records, the better your future care will be. I’d love for you to share in the comment section what tips you use to keep your healthcare costs down.

More information about Barby can be found at her website.

March 10, 2018

What the JAMA Opioid Study Didn’t Find

March 10, 2018/ Pat Anson

By Roger Chriss, Columnist

A recent opioid study published in the Journal Of the American Medical Association (JAMA) evaluated pain management in patients with hip and knee osteoarthritis and low back pain.

The study by VA researcher Erin Krebs, MD, and colleagues found that “treatment with opioids was not superior to treatment with nonopioid medications for improving pain-related function over 12 months.”

That finding was widely and erroneously reported in the news media as meaning that opioids are ineffective for all types of chronic pain.

But the most fascinating result of the study – the one not being reported -- is what wasn’t found. The 108 people in the study who took opioids for a year did not develop signs of opioid misuse, abuse or addiction, and did not develop opioid-induced hyperalgesia – a heightened sensitivity to pain.

And no one died of an overdose.

This is significant because it runs counter to commonly held beliefs in the medical profession about the risks of prescription opioids. Here are a few recent examples:

“Opioids are very addictive and their effectiveness wanes as people habituate to the medication,” Carl Noe, MD, director of a pain clinic at the University of Texas Medical Center wrote in an op/ed in The Texas Tribune.

Don Teater, MD, a family physician in North Carolina, also believes that people on long-term opioid therapy experience dose escalation, which leads to hyperalgesia. “Opioids cause permanent brain changes,” Teater told USA Today.

Krebs herself has made similar comments. "Within a few weeks or months of taking an opioid on a daily basis, your body gets used to that level of opioid, and you need more and more to get the same level of effect,” she told NPR.

But the Krebs study didn’t see any of that happen.

Krebs and colleagues closely monitored the 108 people in the opioid arm of the study, using “multiple approaches to evaluate for potential misuse, including medical record surveillance for evidence of ‘doctor-shopping’ (seeking medication from multiple physicians), diversion, substance use disorder, or death.” They also had participants complete the “Addiction Behavior Checklist” and assessed their alcohol and drug use with surveys and screening tools.

What did Krebs find in the opioid group after 12 months of treatment?

“No deaths, ‘doctor-shopping,’ diversion, or opioid use disorder diagnoses were detected,” she reported. “There were no significant differences in adverse outcomes or potential misuse measures.”

Health-related quality of life and mental health in the opioid group did not significantly differ from the non-opioid group – and their anxiety levels actually improved.

These are observational findings in the study. They were not a part of what Krebs and colleagues were specifically trying to measure. As the study notes: “This trial did not have sufficient statistical power to estimate rates of death, opioid use disorder, or other serious harms associated with prescribed opioids.”

But they are valuable observations. They note what didn’t happen in the study. Over 100 people were put on opioid therapy for a year, and none of them showed any signs of dose escalation or opioid-induced hyperalgesia, or any evidence of opioid misuse, abuse or addiction.

Krebs told the Minneapolis Star Tribune that this “could reflect the fact that the study did not enroll patients with addiction histories, and because the VA provided close supervision to all participants during the yearlong study.”

In other words, Krebs and colleagues used an opioid prescribing protocol that achieved an admirable level of patient safety. Their approach is similar to what many pain management practices currently pursue and what the CDC and various state guidelines recommend: Risk assessment before initial prescribing and careful monitoring over time.

The Krebs study provides rare and detailed observations of what happens when people are put on long-term opioid therapy. A lot of what is claimed about dose escalation, opioid-induced hyperalgesia, and misuse or abuse didn't happen at all.

This outcome demonstrates that long-term opioid therapy can be safe and effective, and may be useful in treating other chronic conditions, from intractable neuropathies to painful genetic disorders. That’s worth reporting too, isn’t it?

March 09, 2018

MS Is My Full Time Job

March 09, 2018/ Pat Anson

By Jennifer Hochgesang, Guest Columnist

I work full time. I mean really 24/7 full time.

A tremendous amount is required of me physically, mentally and ultimately spiritually. I often have to travel on short notice away from my young daughter. These trips always deplete me. And I don’t get very much sleep.

Even though I do this every single day and have for years, I’m constantly being told by pretty much everyone that I don’t really know what I’m talking about and I should listen to them.

I have to deal with big egos on these trips and quite literally they have a hand over me. I have a certain attire that I’m required to wear, and it’s not to make life easier for me, but for them. The only way I get to come home is when I nod my head in agreement and promise to continue working together on our “common” problem.

I often come back home with scars from my travels and even more often “little presents.” My daughter would like to shake them up and down, but I don’t think it’s safe so I put them up high.

The job is so exhausting that I’ve seen my doctor for medications to combat the fatigue, otherwise I wouldn’t get anything done. The extent of this is hard to explain to my friends and neighbors and they begin to make silent judgements.

These judgements grow larger when I cannot go hiking with the kids out in the sun on a 90-degree day. My job won’t let me, I say. They question it at first. But over time they just stop asking and if I see them at a school function, they will just nod my way or sometimes completely ignore me.

There was one time I thought I had made a great new friend. Her daughter was in the same class as my daughter. She was super funny and had her own struggles -- some of which she began to share, so I did as well. She was very artistic, intelligent and seemed to genuinely care.

As time went on we had a couple of play dates, went out to dinner with our girls, and then out of the blue I had to go on an emergency trip. I was so frustrated and sick of them. She told me she would take my daughter to gymnastics and Girl Scouts and not to worry.

Well, it was a long trip and three days after I got home I had to go again. I didn’t share too much about my trips to her. Why would she want to hear all the boring details? But then suddenly, my friend and her daughter weren’t at gymnastics. I texted her. She had switched days. I asked her why, wondering if we could switch as well. She was evasive, and I knew then my work was too much for her.

Part of me wanted to call and scream. If this is too much for you, how do you think I feel?

I want a regular job more than anything. Sometimes it feels like people think I want this job, as if I created it myself. They don’t realize that I had no choice in the matter. But this is what I have to do and accept that I can’t have friends like other people.

I work seven days a week all day long. As I said, my job is demanding. It requires physical endurance, mental fortitude and spiritual grounding. Just in the last month, it has set new requirements. Now I can’t drive, and I’m stuck at home in the winter in excruciating pain.

Mentally, my job takes names from me, messes with my ability to form sentences when I speak, and how to store and retrieve memories correctly. Spiritually, my job requires a belief in something -- something to hold onto -- whether it be a God or Goddess, a dog that has passed away, or a tree outside the window.

Without that, the job will beat you up past the point of understanding. You will be left with nothing: no friends, no family, no wife or husband, no will, and no ability to laugh at life. Ultimately it strips away your humanity and your search for happiness.

If you can ground yourself and see past the pain, the falling and the shaking, and the numbness and confusion, you will not only survive -- you will still be able to strive for meaning in your life.

I work for MS. It’s sometimes better known as multiple sclerosis. Here is my schedule:

Monday: MS
Tuesday: MS
Wednesday: MS
Thursday: MS
Friday: MS
Saturday: MS
Sunday: MS

Do you have anybody in your life that works at MS like me or is in a similar place? If they say they are unemployed, they just mean they aren’t getting paid for their work. If you could trade jobs with them, would you? If so, would you trade with me first? My daughter needs me.

Jennifer Hochgesang lives in Illinois. In addition to multiple sclerosis, Jennifer has endometriosis and trigeminal neuralgia. She is the mother of a beautifully kind and precious 7-year old daughter.

Jennifer proudly supports myMSteam, an online social network for people living with multiple sclerosis, and Living With Facial Pain, an online support group for people living with facial pain.

She wishes to thank Ann Simmons for the inspiration to tell her story.

March 08, 2018

It's a Myth America Consumes 80% of World’s Opioids

March 08, 2018/ Pat Anson

By Roger Chriss, Columnist

Getting the facts right about the opioid crisis is essential. And the claim that the United States consumes 80% of the world’s supply of opioid medication -- while having only 5% of the world’s population -- is incorrect.

This “80/5” claim is popular and persistent. Senator Claire McCaskill tweeted about it last year. Recently Consumer Safety and the Reporter Newspapers repeated it. And news organizations like The Guardian, Business Insider, CNN and ABC News have all reported the “80/5” claim as fact at various times.

The truth is that Americans consumed only about 30% of the world’s opioid medication in 2015. And the U.S. has about 4.4% of the world’s population. That's still a lot, but nowhere near "80/5."

So where does the claim that the U.S. consumes 80% of the world’s opioids come from? It took a little digging to find out.

In 2014, Nora Volkow, MD, director of the National Institute on Drug Abuse, submitted the following testimony to the U.S. Senate Caucus on International Narcotics Control:

"The number of prescriptions for opioids (like hydrocodone and oxycodone products) have escalated from around 76 million in 1991 to nearly 207 million in 2013, with the United States their biggest consumer globally, accounting for almost 100 percent of the world total for hydrocodone (e.g., Vicodin) and 81 percent for oxycodone."

A footnote reveals where Volkow got that information. It came from a 2008 report from the International Narcotics Control Board, which states:

“In 2008 the United States accounted for over 99 per cent of the global consumption of hydrocodone and 83 per cent of the global consumption of oxycodone.”

This ultimately seems to be the origin of the “80 percent” part of the claim. At one time, the U.S. was responsible for over 80% of the world’s consumption of one particular type of opioid medication: oxycodone.

But the numbers vary significantly for each type of opioid. According to the Global Commission on Drugs, the U.S. consumed 57.3% of the world’s morphine in 2013. And Statista reports that in 2015 the U.S. consumed 29.3% of the world’s supply of prescription fentanyl, followed closely by Germany at 23.7 percent.

The U.S. at one time did consume 99% of the world’s supply of hydrocodone. But as a Pain Medicine article by Mark Rose explains, that is because “other countries with adequate opioid access prefer dihydrocodeine or low-dose morphine to hydrocodone for moderate to moderately severe pain.”

Hydrocodone prescriptions have actually plummeted in the U.S. since 2014, when it was rescheduled by the DEA as a Schedule II controlled substance.

So what are the real numbers for opioid consumption?

As Politifact notes while debunking McKaskill’s “80/5” claim, “while the United States is clearly the largest consumer of opioids, it, at most, accounts for roughly 30 percent of global consumption.”

At present, however, there are opioid shortages in some hospitals and hospices. The Philadelphia Inquirer recently reported that morphine, hydromorphone (Dilaudid), and fentanyl — staples of pain control and sedation in hospital settings — are in short supply.

“The shortage of hydromorphone is beyond acute,” Beverly Philip, vice president of scientific affairs for the American Society of Anesthesiologists, told the Inquirer.

The shortage is due, in part, because the DEA has lowered annual production quotas for fentanyl, hydromorphone, and morphine over the last two years by 35 to 46 percent.

This demonstrates the risk of persistent false claims. As Sally Patel, MD, wrote in an excellent Politico piece about the opioid crisis: “We need to make good use of what we know about the role that prescription opioids plays in the larger crisis.”

Otherwise we’ll find ourselves awash in a false narrative while enduring very real pain.

March 05, 2018

A Pained Life: An Activism Primer

March 05, 2018/ Pat Anson

By Carol Levy, Columnist

Those of us who write columns and articles, or comment and tweet about chronic pain, beat the same drum, repeatedly: The world needs to hear us. We have to make our voices heard.

Unfortunately, the most common response seems to be along the lines of “We can't.”

The reasons make sense. Pain and disability keep many of us from being able to go to a rally, representative's office or a town hall meeting. Others say “I want to make my voice heard but I don't know how.”

I'm going to take my space today to give some ideas on how.

The latest outrage is Attorney General Jeff Sessions telling the country people in pain should just “tough it out.”

Because of my eye pain, I cannot write a long letter to him. He is not someone you can access merely by going to his office. Or find him on Twitter or Facebook.

You can, however, tweet to him at the Justice Department: @TheJusticeDept or leave a comment on their Facebook page: www.facebook.com/DOJ/

I sent a tweet. I included a video about my fight and struggle to live with trigeminal neuralgia: what it is, what it has done to my life and what it has taken from me.

Do you have the ability to make a short video explaining your pain disorder and what it has done to your life?

If you have been hurt by the CDC opioid guidelines, can you tell them how? You can you tweet, for example: “CRPS has taken my life from me. Opioids have helped me to get some of it back.”

You could also tweet: “Opioids helped my chronic back pain. I was able to work, play with my kids and have a better quality of life. The CDC guidelines caused my doctor to reduce/stop them and I can no longer do those things.”

You could also find a link on the internet that describes your pain disorder and post it to Facebook: “This is what rheumatoid arthritis is. This is how the pain impacts us.”

If possible, you could also go to town hall meetings, offices or rallies where your legislators will be. I recently went to a town hall meeting on the opioid epidemic. Included on the panel were my congressional representative and one of my county commissioners. We had to submit our questions on a card rather than just ask them.

This was the second town hall meeting where my question, “How can you keep chronic pain patients safe when we are being blamed and often hurt by the actions being taken?” went unanswered.

Undeterred, I made sure to get to the congressman and the commissioner before they left the room. I made sure to come prepared with information, such as studies showing how rarely we get addicted and how the number of suicides appears to be increasing as opioid medications are being reduced or stopped.

Two years ago, I asked my congressman if he could introduce a resolution making October 7 Trigeminal Neuralgia Awareness Day. I was told the House was no longer permitting those kinds of resolutions. Instead of throwing up my hands and walking away, I asked again the following year. This time he was able to do it.

To my astonishment, when I spoke with him the second time he remembered not only that Trigeminal Neuralgia Awareness Day was in October but some of the specifics about the condition itself.

This may help him remember us -- all of us – the next time Congress debates the opioid epidemic. Chronic pain is more personal to him because of his encounter with me.

If at first you don't succeed is a cliché for a reason. It is worth writing, calling, visiting and emailing. The worst they can do is ignore you or say “No.” But trying another time may just get them to say “Yes.”

The tortoise didn’t give up when it looked like the hare was winning. We cannot afford to give up either.

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.

February 28, 2018

Who Benefits From My Suffering?

February 28, 2018/ Pat Anson

(Editor’s Note: This coming May will mark the one-year anniversary of Canada’s opioid prescribing guidelines, which discourage the use of opioid medication in treating non-cancer pain. Canada’s guidelines are very similar to the 2016 CDC guidelines in the United States and are having a similar impact on pain patients. Critics say the Canadian guidelines have created “a climate of fear” among patients and doctors, and may have contributed to several deaths.

Elizabeth Matlack is a 36-year old Canadian and cancer survivor who has lived with chronic pain literally her entire life. She recently wrote this open letter to Health Canada and Prime Minister Justin Trudeau.)

By Elizabeth Matlack, Guest Columnist

June 15, 1981 was the day I was born. I cried a lot as a baby, but nobody knew why.

Three years later, when I was old enough to talk and voice my problems, I told everyone that I couldn't sit down because it hurt too bad. My mother knew something was wrong, but she just didn’t know what. She took me to many doctors, only to be told that I was constipated and that laxatives would solve the problem. They didn’t.

Bless my mother’s heart, because she did not give up. She continued taking me to doctors until a pediatrician had the good sense to do an x-ray and found a grapefruit-sized malignant tumor attached to my coccyx and spreading up my spine. I was given a 10% chance of survival while they operated and removed the tumor.

They would go on to remove my coccyx, and gave me over a year of chemotherapy and 28 days of cobalt radiation to what was left of my spine. The damage done to my backside was permanent. The radiation destroyed every single fat cell, causing me to have a cavity where most have buttocks.

Sitting is very painful for me. The best way to describe how it feels is to imagine yourself resting your elbow on a hard surface, allowing all of your weight to fall on that elbow. That is what it feels like to sit. I cannot sit or lay on any surface that is not completely cushioned.

Not only was the physical pain excruciating, there was the emotional pain of not having a butt, not being able to find any clothes that fit, and being called "No Bum Beth" in school.

Sitting has always been the most painful thing for me, followed by standing and walking. The severe pain in my backside, down my right leg and up through my back is non-stop. Every hour of every single day I am in pain so severe that it makes the most basic life functions difficult.

Those are the reasons that I have been in pain management for over a decade. I have been able to create a somewhat normal life for myself using opioid pain medication. OxyContin and morphine have given me the ability to do what I love most in the world, which is.to make art and walk my dog. The chemo and radiation robbed me of my ability to have children, but they did not steal my inspiration and artistic abilities.

I have followed all of the rules set forth by my pain doctors, keeping my meds locked up, never sharing with anyone, never asking another doctor for drugs, and passing urine drug tests each month. But none of that matters now.

The new guidelines set out by Health Canada have caused doctors to no longer treat patients based on their individual needs, but rather as a number based on the guidelines. For 5 years I was on the same dose of OxyContin and morphine. The regimen worked well for me and afforded me the ability to create all kinds of artwork. For the most part, I had a pretty decent and comfortable life -- until the guidelines came out.

In less than 6 months, I was tapered down to less than a third of the opioid dose that I was stable on for five years. The tapering was very fast and caused immense daily suffering on my part. I do not remember the last time I have slept more than an hour at a time. I do not have enough pain meds to get thru 24 hours of the day no matter how I work it. Every single day is a roller coaster of severe pain and withdrawal.

My pain specialist no longer has the ability to treat me properly and I am routinely left without any pain medication, while my GP doctor tries to treat my very high blood pressure. When my pain was being managed, my blood pressure was fine.

I know life isn't easy and I definitely know it can be unfair. But this sort of cruel and unusual torture that I am being put through is absolutely disgusting. I keep hearing about the "opioid crisis," but the only crisis I can see is all the legitimate pain patients going untreated and suffering, because legislators have their thumb on the doctors and doctors have too much at stake to risk treating patients properly.

Health Canada says the opioid guidelines are voluntary and were never meant for pain management doctors, but rather for general practitioners and surgeons treating acute short-term pain. Yet the pain clinics are being raided and told to enforce the guidelines no matter who the patient is and what is wrong with them. I do not know how much longer my body can continue in this much pain.

I want to make sure that the truth gets out there. There are far too many people suffering and being denied proper medical care. And for what? Who wins? Who is benefiting from all of my suffering? Who?

Elizabeth Matlack is an artist and illustrator in Ontario, where she is best known by her artist pen name, Lizzy Love.

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

February 28, 2018

Should the ‘War on Stem Cells’ Be Fought in Court?

February 28, 2018/ Pat Anson

By A. Rahman Ford, Columnist

A recent article published in the journal Regenerative Medicine suggests that civil lawsuits should be used to protect patients and draw attention to unscrupulous stem cell clinics.

The authors, Claire Horner, Evelyn Tennenbaum, Zubin Master and Douglas Sipp, contend that civil litigation would "convincingly show patients and society that there are real and significant harms from unproven SCIs (stem cell interventions), and this strategy may complement the arsenal of efforts focused on reining in this industry.”

Horner, Tennenbaum and Master are academics in medical ethics at Baylor College of Medicine, Albany Law School and the Mayo Clinic, respectively; while Sipp is affiliated with RIKEN, a Japanese research institute that is developing stem cell technology.

Their use of the word “arsenal” sounds like a declaration of war, an unfortunate, fratricidal war against their fellow Americans who need stem cells to treat their pain and disability. After reading their article, it’s clear that fearmongering is their best weapon.

The authors really don’t like clinics that use a patient’s own stem cells to heal themselves. They lament that many industrialized countries are moving toward more openness in accelerated approval of stem cells and other regenerative therapies. And they contend that inadequate enforcement and penalties at the U.S. federal level justify the need for lawsuits.

“In the absence of government oversight of private sector firms, patients and consumers may need to look elsewhere to protect their interests. Civil litigation provides a means for patients who feel they have been harmed by undergoing a SCI to seek redress and compensation from providers and may also motivate government and industry to address the issue on a larger scale,” they wrote.

The most stupefying part is that the authors go so far as to compare the issue to tobacco companies, gun violence and child molestation!

The authors admit at the outset that the main goal of their campaign is to propagandize the public and policy-makers. They state plainly that “stem cell lawsuits may help raise public awareness and influence public policy” and would help draw “attention to negative outcomes and engender moral outrage on the behalf of vulnerable and sympathetic plaintiffs.”

This tactic would shift attention away from pesky patients’ rights advocates who support broader availability of the potentially life-saving treatments offered by stem cells. They see this strategy as viable because it worked for consumers injured by the tobacco industry, victims of gun violence, and sexual abuse victims molested by Catholic priests. The fact that the authors would put stem cell clinics – and by extension stem cell patients – in the same category as Philip Morris, AR-15 gun manufacturers and pedophile Catholic priests is simply ludicrous.

For the authors, civil litigation is essentially a propaganda tool in their misguided war against a non-existent enemy. They advocate using civil litigation to “attract public attention” and “shape the media narrative.” Information operations such as these are an age-old concept in international relations and warfare, that includes the collection of tactical information about an adversary as well as the dissemination of propaganda in the pursuit of a competitive advantage over an opponent.

And how do the authors intend to collect their tactical information? They will use the civil litigation discovery process to uncover “previously undisclosed information about a provider’s practices” that could potentially trigger FDA investigations.

Overall, the tone of the authors’ proposal is that of combativeness and belligerence, not negotiation and reconciliation. As with all misguided wars, it is civilians – those who the war is allegedly waged to protect – are the ones who suffer the most.

Little Evidence to Support ‘War on Stem Cells’

Even worse, they don’t show their “war on stem cells” is supported by any real-world evidence. Their methodology is insufficiently rigorous; it lacks integrity to the point of being flimsy, porous and leaky. The data which serve as the cornerstone of the authors’ argument are 9 court cases in which plaintiffs allege that the stem cell therapy they received was either ineffective or injurious.

This sample is far too small to seriously support any meaningful conclusions, much less the authors’ conclusion that the number of legal claims is growing. The 9 cases cited were filed between 2012 and 2017 for a wide variety of medical conditions and for a wide variety of causes of action.

Not only are we not told how many stem cell procedures were actually performed in American clinics over the same time span, but in none of the 9 cases cited was there a disposition in favor of the plaintiffs! In fact, one was voluntarily dismissed by the plaintiffs and another was dismissed on appeal. Of the remaining seven, 4 were settled and 4 have yet to be decided.

So none of the claims of negligence, misrepresentation, fraud, lack of informed consent, or unfair trade practices were ever proven. The authors acknowledge that this is a problem, and in desperation turn to a Japanese case to support their claims. The problem is the authors openly admit that “the U.S. administrative and legal systems differ greatly from Japan’s.” It’s never a good idea to undermine your own argument.

If the authors are truly motivated by the safety and welfare of stem cell patients, then perhaps their efforts would be better spent advocating for the increased democratization and liberalization of stem cell policy.

This can be accomplished by supporting policies geared toward the availability and affordability of stem cell therapies, such as the patient-centered ethos of “Right to Try” legislation, the regenerative medicine provisions of the 21st Century Cures Act, and the constitutionally-protected privacy right in a patient’s use of their own stem cells.

We need less antagonism and asymmetry in stem cell policy-making, and more alliance-building and acceptance of a new paradigm of progress. The solution is not more litigation against people, but more listening to the people.

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.

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