Opioids, Off-Label Prescribing and the Road Not Taken

By Lynn Kivell Ashcraft, Guest Columnist

So much of the conversation about the use of opioids and other medications to treat various conditions has made it sound like doctors are doing something wrong when they utilize a treatment in an off-label fashion. 

Off-label prescribing is not a crime. The federal Agency for Healthcare Research and Quality (AHRQ) estimates that 1 in 5, or 20 percent, of all prescriptions are written for off-label use.

In fact, off-label use of a drug often represents the standard of care. The Food and Drug Administration never intended for its drug approval and labeling process to be the sole determining factor in how a drug is to be used in a clinical setting. 

It is left to physicians themselves to determine the ultimate clinical utility of pharmaceuticals, biologicals and medical devices in treating their patients.

Epidural Steroid Injections Are Off-Label

Some off-label use, however, is controversial. Many accepted protocols for treating back and neck pain include the use of epidural steroid injections (ESIs), despite a lack of rigorous supporting clinical evidence. As many as 9 million ESIs are performed in the U.S annually, yet few patients are told the injections are an off-label use of both the medication (corticosteroids) and the route of administration (an injection into the epidural space of the spine).

In 2014, after hearing about serious neurological problems in patients who received ESIs, the FDA required a label warning that injections of corticosteroids into the epidural space may result in rare but serious neurological events, including "loss of vision, stroke, paralysis, and death."  

Anxious not to lose a treatment that they believed in, professional societies of anesthesiologists, pain medicine physicians, rehabilitation specialists, neurosurgeons, surgeons, radiologists and interventional pain specialists wrote guidelines to prevent complications from ESIs that were published in the journal Anesthesiology in 2015. 

A coalition of doctors also formed the Multisociety Pain Workgroup (MPW) to defend the use of ESI’s. The MPW called an AHRQ study “flawed” and “absurd” because its questioned the effectiveness of ESI’s for treating low back pain. It also lobbied unsuccessfully to have the FDA tone down its warning.

Since 2017, according to OpenSecrets.org, the American Society of Interventional Pain Physicians has spent nearly $1.5 million on campaign donations and lobbying — much of defending the use if ESIs.

Where was the same type of outcry from the medical profession defending the use of opioid medication when the 2016 CDC guideline was released? Why have so many doctors stood by silently while insurers, states and the DEA began implementing the guideline as policy?

Lynn Kivell Ashcraft is an analytic software consultant and writer who lives in Arizona. Lynn has lived with chronic intractable pain for almost 30 years and works with Dr. Forest Tennant as part of the Arachnoiditis Research and Education Project. 

How to Recover From a Painful Breakup Caused by Chronic Illness

By Ann Marie Gaudon, PNN Columnist

What no one talks about. Getting “dumped” because you have chronic pain or illness. Let’s talk.

There’s no denying the unbearable emotional pain if someone you love decides they’ve had enough. The reality is that people can be cruel, including people that you never thought had it in them. Here’s a few zingers I’ve been made aware of:

“You’re always in pain and I’m sick of it!”

“I never signed up for this sh*t!”

 “I’m so done looking after you!”

Sound harsh? It is, and it happens. While the breakup might be blindsiding, the reality is that the partner has likely been emotionally disengaged for some time. By the time they say those words, they are essentially over the relationship. However, for the person hearing them, they are likely in the initial stages of grief.

If you’ve seen messy breakups in the movies, you might think the answer is fuzzy pajamas and a litre of chocolate chunk ice cream. This will take more than a visit with Bridget Jones.

MRI brain scans have shown that the withdrawal of romantic love activates the same brain mechanisms that get activated when someone suffering from substance abuse goes through withdrawal. That is powerful pain. This would explain why we can obsess over ex-partners and crave them as if they were a drug we've been deprived of.

How to help yourself? Ensure the thoughts you have about your ex are realistic and balanced. If your memory consistently goes to that “best night of your life,” remember all the other nights that were upsetting to you. If you are consistently longing for their loving embrace, remember the nights that your advances were rejected.

What Went Wrong?

If you’re really struggling to get a grip on the reality of the relationship, write a list of all the reasons that it went south. You will see that it wasn’t 100% due to your pained body.

The point is to take a wider look and get a better perspective on the entire relationship. While you are emotionally depleted, your focus will tend to be narrow and unrealistic.

Accept explanations that fit the facts -- such as they were unwilling to make a commitment or they were not the person you thought they were. Avoid creating a harsh inner critic about why the breakup happened and see the relationship for what it was. Make a list of compromises that you made in this relationship that you would rather not make next time. What did you learn about yourself? Can you grow from this?

Do not check on your ex through social media. This will make it harder for you to stop fantasizing about your relationship and spending your time marinating in self-pity while imagining your ex out there living their best life sans you. Remove reminders of your ex such as photos, emails, or messages which will only add to your distress.   

Take control of your behaviour. Do things that used to bring you joy, even if they don’t at the moment. Continuing to engage is a very important way to tell yourself that life does go on. 

Reach out to friends, family or other loved ones to gather all the support you need. We all know what breakups are like and we all have our own words of wisdom to offer.

If your grief is not lessening with time, reach out to a therapist. A trusted therapeutic relationship can help you find your voice to express your grief in a healthy, healing way. A skilled therapist can also help you to develop new social relationships and a sense of self-worth to help decrease isolation and pain-related depression.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

Landline More Important Than Cell Phone for Chronically Ill Patients

By Barby Ingle, PNN Columnist

I cannot stress enough the importance of having a traditional landline when people are turning to cell phones or internet-based phone systems (VOIP). In 2018, over half of American households were "wireless only homes."

People are switching for cost and convenience, but many are unaware of what they’re losing when they drop their landline. This is a topic close to my heart, because my own father would still be here with us if he had a working landline the night he passed away.

We see television shows where people use their cell phones to call 911 to report a fire or emergency. The fact is it doesn’t work that simply.

Major limitations are introduced when you call for help from a cell phone or VIOP system, which can leave a chronically ill person or someone in an emergency situation unable to receive help immediately.

As a pain patient whose husband worked outside of our home for years, this is something to know and take steps to remedy before something happens to you.

There are a variety of reasons to keep your landline. One would be quality. A landline gets a clear, reliable connection with virtually no delays or lag times. When I do a radio or podcast interview, they usually ask that I call on a landline. Audio issues on a radio show typically occur when a guest is calling from a cell phone or computer.

Calling 911 for help from an area with a weak wifi or internet signal can cause problems. If they can’t hear you clearly, that can delay getting help to you.  A landline almost always provides clear coverage because of the telephone network infrastructure in place across the USA. You don’t have to rely on spotty tower connections or a slow internet.

Many home alarm systems also use landlines, because even when the electricity goes out, the phone line won't. If the alarm system is hooked up through VOIP or a cell phone, there is no guarantee that the call will go through or the person will understand you.

During last year’s disastrous wildfire in Paradise, California, many cell phones were useless because phone towers were damaged or lost electricity. Residents without landlines couldn’t be warned about the approaching fire and over half of the cell phone calls to 911 failed.

Home Alone? Then Keep Your Landline

Having a landline to call in emergency situations is worth the expense. At an additional cost of about $10-20 a month you can have a basic landline active in your home so that you can call local numbers and emergency numbers such as 911 or 0.  

As a chronically ill person myself, I am home a lot. My cell phone service is not great at our house due to the rural area we live in. We use the traditional landline even for regular calls with our family, friends and of course in emergency situations.  

The biggest reason to have a traditional landline is safety. With a landline, you don’t even need to speak.

As long as you can get the phone off the hook and dial “O” for an operator or 911 for emergency services, they can listen in -- in case you are being robbed and need to be quiet or unable to speak for any reason.  

Another advantage of a landline is that your street address comes up automatically on a 911 operator’s computer screen. They know precisely where you are calling from.

That is not always possible with a cell phone. They may be able to determine what cell phone tower your call is being routed through, but they won’t know your exact location.

Imagine your child trying to call 911 because you are having a seizure or unconscious. If the child is too young to speak or remember your address in an emergency situation, a cell phone might as well be a toy.  

If you can only afford one phone line, make it a traditional landline if you spend most of your time at home due to chronic illness. Chances are when you’re out and about, others will have a cell phone and be able to call emergency services for you.  But when you are home alone, trust me, having a landline can save you time, money and perhaps even a life. This is a fact that my family found out firsthand with the death of our father.  

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.  

Living with Chronic Pain During the Holiday Season

By Dr. Lynn Webster, PNN Columnist

The holiday season is underway, but that doesn't mean everyone is healthy enough to celebrate. Chronic pain does not take a vacation or even ease up in honor of Christmas, Chanukah, Kwanza or any other holiday.

People who are in unremitting pain will suffer, while others throw themselves into endless rounds of joyous holiday-related activities.

For those in pain, and their caregivers, it may not be possible to participate in shopping, decorating or partying. They may feel disenfranchised, abandoned and hopeless. I have received hundreds of emails from people in pain who feel alone. Their doctors may have abandoned them or been unable to provide medication that can help manage their pain.

Holiday-themed social media posts, movies and television shows make it appear as if everyone is, or should be, happy and productive during the final weeks of the year.

However, the truth is that the holiday season can be stressful for many people, regardless of their health. Financial burdens, overindulging in food and alcohol, and getting too little sleep can take their toll.

Family members and friends may fail to empathize, even when they have fewer distractions and social obligations. During the weeks leading up to the New Year, people in pain may feel even more isolated than usual.

Universal holiday bliss is an illusion for many. Other people may long for the commotion of the season to end, too, so calm and normality can return. If you're finding the season to be something other than a never-ending winter wonderland, you have plenty of company in feeling that it is not.

Ask for What You Need

The holiday season does not require you to pretend that you are not in pain. You do not have to wear a mask of well-being in order to ease the burden of others. It is not your job to fake a positive attitude that you do not feel. Your responsibility is to take care of yourself.

You are not obligated to accept invitations for get-togethers, shop for gifts, or decorate when you are experiencing pain.

While other people may hope that you will put on a brave face, you are not required to fake anything you do not feel. On the contrary, you should be honest about your needs and give others a chance to share part of the holiday season with you.

Do let your loved ones know that you are there, and that you are thinking of them. If mobility is an issue for you, consider inviting a relative or friend to visit you. Be up front about the fact that you could use help with meal preparation and cleanup, sending cards, and the like.  

If there is no opportunity to get together with people you care about, perhaps you can arrange an online chat using Skype or a similar service. Ask the children in your life to participate, too. Even active teenagers and sleepy toddlers may be able to find a few minutes to share quality time with you. 

While you may not be able to participate in all of the holiday season activities, you can experience some of the love and joy you deserve if you prompt others to help. 

Seek Support 

Feeling isolated may be one of the most difficult aspects of living with pain during the holiday season. Consider joining a support group so that you can share your burden with people who understand what you are going through. The U.S. Pain Foundation and the American Chronic Pain Association list support groups online that you might benefit from joining.  

Caregivers fill a role that I have described as everyday saints and unsung heroes. However, even saints and heroes can experience burnout around the holiday season.  

It's especially important at this time of year for caregivers to practice self-care. This may include tapping into a caregiver support group and asking family members and friends to provide a short-term reprieve.  

Empower Yourself 

While you may not be able to invest yourself fully in the holiday season festivities, you still have power to take positive action. Reach out to lawmakers, and ask them to support more humane opioid prescribing policies. Contact your local members of the House of Representatives and Senate. Also, send a letter to the editor of your local newspaper and contact the news departments of your local television and radio stations.  

For many Americans, the holiday season is associated with faith. This is a good opportunity to remember that scientists are working on finding better and safer ways to manage pain. Policymakers are beginning to admit that tapering unwilling patients can cause harm.

There is hope that the New Year will bring us closer to solutions for people with pain. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is the author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. 

Drug Legalization Needs to Consider Drugs That Haven’t Been Invented Yet

By Roger Chriss, PNN Columnist

Drug decriminalization and legalization have become hot topics in the U.S. and around the world. Some states have legalized recreational cannabis and a handful of cities have decriminalized psilocybin, a hallucinogen found in some mushrooms. Countries like Portugal have decriminalized all drugs.

The arguments in favor of legalization seem reasonable, from harm reduction and de-stigmatization to access to a well-regulated supply of substances that people are going to use regardless of whether they are legal or not.

But rarely are questions asked about the drugs that haven’t been invented yet. Debate about legalization usually centers on popular but controversial substances like cannabis, with no mention of novel fentanyl analogs or other new psychoactive substances.

Novel opioids appear on the dark web regularly. For instance, the potent synthetic opiod isotonitazene is now being sold online, even though a team of international researchers said it “represents an imminent danger.”

Public health officials in the U.S. also recently warned about isotonitazene in the journal NPS Discovery, after the drug was identified in blood samples from eight overdoses deaths in Illinois and Indiana.

“Pharmacological data suggest that this group of synthetic opioids have potency similar to or greater than fentanyl based on their structural modifications,” they warned. “The toxicity of isotonitazene has not been extensively studied but recent association with drug user death leads professionals to believe this new synthetic opioid retains the potential to cause widespread harm and is of public health concern.”

Similarly, there are reports on overdoses with cyclopropylfentanyl, a chemical cousin of fentanyl that first appeared in Europe in 2017.

“The constantly growing diversity of NSO (new synthetic opioids) still poses a high risk for drug users and can be a challenging task for clinicians and forensic toxicologists. Clinicians treating opioid overdoses should be aware of the potentially long lasting respiratory depression induced by fentanyl analogs,” German researchers said.

Novel Substances

This problem is not limited to illicitly manufactured fentanyls and other opioids. Novel synthetic cannabinoids also pose risks. Such compounds include JWH-018 and AKB48, both known to be dangerous.

And the world of hallucinogens, amphetamines and other psychoactive substances is evolving, too. Psilocybin can now be harvested from bacteria and over 150 synthetic cathiones-- amphetamine-like psychostimulants -- have been identified in clandestine drug markets.

“Over the past hundred years or so, humankind has learned to synthesize the active chemicals in laboratories and to manipulate chemical structures to invent new drugs—the numbers of which began growing exponentially in the 2010s,” Ben Westoff notes in Fentanyl, Inc.

Further, drug consumption technology is changing rapidly. Just as the hypodermic syringe forever changed the risks of heroin, vaping devices are having similar effects. They allow for high-intensity consumption of nicotine, THC, and other drugs that contain unknown contaminants, as seems to have happened with vitamin E acetate in the recent outbreak of lung illnesses associated with vaping.

Lastly, there are risky interactions that can occur with the use of novel substances. The American Council of Science and Health points to the particularly important issue of drug-drug interactions. The world of street drugs now involves so many adulterants and contaminants that, when combined with novel substances, drug-drug interactions are potentially more dangerous than ever.

Historically, legalization of drugs has not led to a net public health benefit. And that was when “drugs” consisted of plant matter or distilled liquids. Modern technology means we can do much better, which in turn means we may be facing far worse.

The greatest risks arguably come from the drugs that have yet to be invented and the interactions that have not been discovered. Any discussion of full drug legalization needs to consider such possibilities.

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.

Backlash Against Nurse Who Mocks Patients for Faking Illness

By Crystal Lindell, PNN Columnist

You may have seen it by now. In a short, 15-second video, a nurse plays herself as well as a patient, who appears to be coughing and having trouble breathing. In the video, the nurse starts dancing and ignoring the patient.

The caption reads: “We know when y’all are faking.”

I have to tell you, it’s infuriating to watch.

I’m also wondering what she thinks would be the motivation to fake a cough. It’s not as though they typically treat coughs with pain medication. Is it because she thinks the patient just wants attention? Is that what’s happening?  

As a chronic pain patient who has been in and out of hospitals and doctor’s offices over the years, it’s my worst nightmare. To have a medical professional ignore me and my very real pain because they think they possess some special power that allows them to know with 100 percent certainty that someone is faking.  

I’m not alone in my outrage. The video inspired a viral hashtag, “PatientsAreNotFaking” with countless people sharing why the video wasn’t just annoying, but also dangerous.

Of course. I have my own stories. Doctors and nurses have brushed me off. There were the countless ER doctors who insisted that my multiple visits for abdominal pain were simply heartburn. One doctor even said to me, “It’s not your gallbladder.” 

It was my gallbladder.  

There was also the nurse who ignored my pleas for help after giving me a shot of pain medication that immediately made me nauseous. She told me to “drink some water” and sent me home instead of giving me an easy anti-nausea shot.

I threw up three times on the drive home and then multiple times for the next 10 hours. It was one of the worst nights of my life.  

And then there was the rheumatologist years ago who so easily could have caught my hypermobile Ehlers Danlos syndrome. I had gone to see him because of my unexplained rib pain, and as he examined me, he moved my leg, looked up and said, “Your knee isn’t supposed to bend that way.” Then he shrugged and told me that nothing was wrong with me.  

It would take four years before I finally got the hEDS diagnosis that explained my daily, debilitating chronic pain. 

But let’s take things one step further. Let’s enter the world of the video. Let’s assume patients are faking. So what? What’s the worst-case scenario? Medical professionals have to, God forbid, check in on a patient? Isn’t that their job anyway? 

This issue especially hits close to home for chronic pain patients. Every medical professional’s worst fear seems to be that they’ll give opioids to someone who just needs them because they’re addicted. And I have to ask, again, so what?  

Here’s the two scenarios if you give someone opioids in that situation: 

1. They aren’t faking and you’re helping someone who’s dealing with legitimate physical pain.

2. You’re giving a safe, controlled supply of opioids to someone who’s suffering from such awful withdrawal that they have resorted to trying to get to pain medication at an ER. Oh no! That might accidentally help someone? The horror!

Yes, giving pain medication to people dealing with addiction could lead to a flood of patients in the ER asking for opioids. Honestly, that’s why I support making hydrocodone OTC. It would keep people who are dealing with minor pain out of the ER, as well as those dealing with addiction and withdrawal. It might also prevent many of the overdoses caused by people buying counterfeit drugs off the street. 

The thing is, it’s human nature to assume someone is faking. It’s actually a defense mechanism. Medical professionals see so many sick people in their work that for many the only way they can cope is to convince themselves that most of them are probably faking. It’s much easier to believe that than it is to believe that so many people are suffering.  

The other issue is that people’s instincts are awful. They are often based on subconscious prejudice that they may not even realize is a factor. It’s human nature to separate yourself from other groups as a form of self-preservation. Unfortunately, that leads to a lot of medical professionals assuming that any patient complaining of pain is probably faking it. 

The fact that the nurse who made this particular video, Danyelle Solie, did nothing but double down when faced with criticism shows how poorly-matched she is her for job.  Solie told a Canadian website she’s worked in healthcare for five years.

“I absolutely will not be bullied into apologising or deleting a video because some people disagree with me,” she said in a Tweet thread. “Humor has always been what made me stand out to the people I work with and the patients I help.”

Solie regularly posts comical videos online using the name “D Rose.” Some videos make fun of herself and others make fun of patients or the healthcare system in general. The one about patients faking has been viewed about 15 million times. 

We should expect more from medical professionals. They should be able to wade past their subconscious instincts and make an effort to treat patients fairly. They also shouldn’t joke about such dangerous things.  

And when in doubt? Here’s some advice to all the medical professionals out there: Just assume the patient is telling the truth. Trust me, it’s what you’ll want when you get sick.  

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.  

Severely Injured? Don’t Count on Getting Opioid Pain Medication

By Madora Pennington, PNN Columnist

When I went to Cedars-Sinai Urgent Care in Los Angeles recently, screaming and crying, my blood pressure dangerously high, my foot ballooning and turning blue from a household accident, the doctor wouldn’t give me opioid pain medication.

They x-rayed my foot. Two bones were broken. They gave me a shot of a NSAID that, they said, would wear off in a few hours. It did. They gave me crutches, a boot to immobilize my foot, suggested I see a surgeon and, in the meantime, take Advil. What?

It wasn’t personal. This is Cedars-Sinai’s policy. In urgent care, they won’t give opioids to anyone for any reason.

I had gone to Cedars-Sinai because I have a complex medical history. There, my records are most complete. This makes the appointment easier for the doctor and me.

Also in my records is my long-term opioid use history. I was on Vicodin and morphine daily for about six years, to treat chronic pain from Ehlers-Danlos syndrome, a rare genetic disorder that causes all the joints to be loose, or rather, permanently sprained.

When I started on daily opioids, an option no longer available, I had pain that I could not live with, no quality of life and was planning my suicide.

Those drugs gave me enough relief to endure. I became less of a burden to my caretaker. I could focus on trying to improve my health. If your day is spent fighting extreme pain, being productive is not possible.

Then I got very lucky.

In 2014, experimental treatment had improved the strength of my tendons and ligaments. My body hurt less. I went straight off the opioids and stayed off.

Withdrawal was a harrowing marathon of torture. For years after, I suffered from the physical damage opioids left behind. But I didn’t go back on them because I had never become addicted. Why? I had been warned at the start of my opioid treatment to take the drugs for physical pain only, not for emotional relief. This patient follows orders.

As a result of the war on opioids, many chronic pain patients are being denied adequate pain relief. Some forced to taper end up committing suicide from the agony of withdrawal plus untreated pain. This became such a problem, the U.S. Department of Health and Human Services issued new recommendations in October, advising doctors to look at each case individually and not to put patients on rapid opioid tapers or abruptly discontinue them.

But I had never heard of someone with a severe, acute injury forced to suffer. Even I can’t be trusted? I have a proven record of responsible opioid use with no addiction.

The doctor treating my injured foot, clearly embarrassed, told me, “This is urgent care. If it’s something severe, the patient should be in the ER or at a pain doctor.”

But I had called before I came. “Would they see me for a possibly broken foot?”

The receptionist said to come in, they would x-ray me right away. She didn’t say I would not be given adequate pain medication.

Has the war on opioids gone too far? If doctors and hospitals are too afraid of lawsuits or prosecution to prescribe, then yes.

A Mayo Clinic study found that only about 1% of patients given opioids in emergency rooms went on to long term use. Another study found less than 1% of patients being treated with opioids for post-surgical pain developed dependence or abused opioids. Does that mean the other 99% of us should not get pain medication?

Not according to the CDC, which suggests three days of opioids for acute injuries like mine.

After I left urgent care that day, I took Vicodin which had expired a year before but I’d never gotten rid of. If it hadn’t worked, I would have had to call an ambulance and gone to the ER that night, just for pain treatment.

After surgery, the podiatrist told me, “One bone was in pieces. I bolted together what I could. Some bits were too small so I picked them out and threw them away.” Well, that explains the pain I’d been in.

I vowed never to leave things on the floor that someone might trip on. And I set up Google Home to process a command to make a phone call for help.

I also filed a complaint with the state against the doctor. Medical care is about the patient, not hospital bureaucrats.

Madora Pennington writes about Ehlers-Danlos and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

Patient Who Can’t Find Doctor in Texas Flies to California for Pain Care

By Lori Ravellli, Guest Columnist

I am writing to ask for a change in attitudes toward people in pain who need improved access to treatment. I want my voice to be heard when actions are taken to curb the opioid abuse problem.

I need help. I suffer and have suffered for years from severe chronic lower back and coccyx pain that is unbearable. Some of the conditions I have been diagnosed with are chronic pain disorder, lumbar spondylosis, hypertrophic set arthropathy, degenerative disc disease, lumbar nerve root disorder and scoliosis. I honestly do not know what all of this means but I know how bad it hurts.

I also had a gastric procedure which limits the kinds of medications I can take, such as ibuprofen, muscle relaxers, naproxen and NSAIDs.

I have had multiple appointments with neurosurgeons and other doctors, who say I have too much wrong with my lower back to have any surgical procedure. I have stacks of reports and test results justifying my issues. I have had multiple injections with different medications and locations to drain my bank account, gain weight and still suffer in agony.

My only option is pain management through medication. I cannot sit down for any length of time and lying down hurts. I can only stand for so long without my legs giving out. In addition to that, I have shooting pain down my leg when I do sit.

Sadly, as much as a body needs rest, I can no longer rest comfortably. My quality of life is almost nonexistent due to the debilitating pain. Without relief, I really contemplate ending my life. I can no longer deal with the agony.

LORI RAVELLI

I do not want my friends and family to grieve because I took my life due to pain and lack of treatment. Chronic pain patients visit their doctors often, are subject to drug tests, and are not the reason there is a crisis in this country. Doctors being too scared to treat patients is not fair to us.

The problem is so bad here in Texas that doctors do not want to care for pain patients. I moved to Texas two years ago and have struggled to find care and treatment. I have been forced to fly back to my old doctor in California to get medication. My doctor I saw for many years knows me, knows I do not over-medicate, and has never needed to raise the dose of my medication.

I cannot believe that I am not able to find a doctor to treat me here in Texas. Sitting is so painful and it is a struggle to fly 3 hours for a doctor’s appointment. I have to sit in the car an hour, sit in the airport for 2 hours, and then the flight for 3 hours. Sitting is so painful because of my back and pain shooting down my leg.

By the time I arrive, I am in such horrific pain it takes days to recover. I am so tired of living in agony. This is so wrong and it is my human right to have some pain relief because it is available. 

The real problem seems be addicts that purchase medication from the streets and not knowing what they are purchasing. When people are not able to get their medication from the proper channels, they will seek options from the street with hope of finding some relief.

Pain relief is a human right and without relief people will take their lives. Living with debilitating pain you have no quality of life and no reason to wake up in the morning.

I am tired of being treated like a drug addict. I am suffering severely and need medication to be a functioning adult. I know I will never be pain free, but any relief is welcomed. Please, please for the love of God stop punishing the patients and the medical professionals trying to help them!

Lori Ravelli lives in Galveston, Texas.

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

This column 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.

Opioids Are Not the Only Pain Meds That Can Be Abused

By Dr. Lynn Webster, PNN Columnist

Contrary to popular opinion, opioids don't cause substance abuse. Opioids certainly may be abused, but it is human biology itself that drives drug abuse.

We often get the message that any other pain treatment would be better than using opioids. However, even non-opioids prescribed for pain can contribute to overdoses and suicides. The same genetic and environmental factors that cause opioid abuse can induce abuse of other drugs, too.

For several years the number of opioid prescriptions has declined significantly, due to public demand and political pressure. According to the IQVIA Institute, there was a 17 percent decrease in the number of opioids prescribed in 2018 alone.

We may have expected that to translate into fewer drug abuse problems. Instead, we have seen an increase in overdoses, hospitalizations and suicides involving non-opioids such as gabapentin, methamphetamines and muscle relaxants.

Less access to prescription opioids has driven some people in disabling pain to seek illegal alternative medications. That has led to a wave of use and abuse of drugs that doctors have not prescribed.

Between 2016 and 2017, the CDC reported a nearly 47% increase in fentanyl-related deaths. Overdoses related to methamphetamine and cocaine have also surged.  

According to Stateline, approximately 14,000 cocaine users and 10,000 meth users died in the United States in 2017, triple the number of deaths in 2012. Deaths involving have heroin also spiked since 2010.  

Gabapentin and Baclofen 

Prescription drugs, too, have fueled the negative statistics. Doctors have felt forced to taper or discontinue opioids. In an attempt to find alternatives for pain management, they have increased the number of gabapentin and baclofen prescriptions. 

As PNN has reported, a recent study published in Clinical Toxicology found a “worrying” increase in calls to U.S. poison control centers about gabapentin (Neurontin) and the muscle relaxer baclofen, coinciding with a decrease in opioid prescriptions. The study analyzed more than 90,000 cases of exposure to gabapentin and baclofen, many of which were coded as suicides or attempted suicides.

“Gabapentin and baclofen are two medications that have seen increased availability to patients as alternatives to opioids for the treatment of acute and chronic pain. With greater accessibility, poison center exposures have demonstrated a marked increase in toxic exposures to these two medications,” wrote lead author Kimberly Reynolds of the University of Pittsburgh.

“As poison center data do not represent the totality of cases in the United States, the steep upward trends in reported exposures reflect a much larger problem than the raw numbers would suggest.”  

Gabapentin is one of the most commonly prescribed drugs in the United States. It is prescribed for epilepsy, hot flashes, migraines, nerve damage, and more. It is also used to treat the symptoms of drug and alcohol detoxification, and to treat pain for patients at higher risk of addiction to opioids.  

Baclofen is a muscle relaxant that has also been substituted for opioids. Other non-opioid drugs such as pregabalin and NSAID’s are being increasingly prescribed as well.  

All Medications Have Risks 

Non-opioids have a role to play in pain management, but it is just as important to understand their dangers. While we need effective alternatives to opioids, it is important to know that alternatives also have risks. That is unavoidable, because all medications carry potential benefits and consequences.  

To decide whether a medication is appropriate for an individual, it is critical to determine whether the potential benefit outweighs potential harm. Gabapentin and baclofen are not bad drugs, but they are not harmless replacements for opioids, either.  

No pain medication, whether it is an opioid or non-opioid, is right for everyone under all circumstances. The next time a physician or nurse practitioner suggests replacing an opioid with gabapentin, baclofen, or another medication, it would be appropriate to ask for a comparison of the risks and benefits. 

Talking with your healthcare provider about your preference for a particular medication does not make you a drug seeker. It helps you become an informed patient. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is the author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. 

Living Well With Fibromyalgia

By Lynn Phipps, Guest Columnist

In 2016, as a guest columnist for PNN, I shared my story of being diagnosed with fibromyalgia and the offending ways I was treated by the medical community for having an invisible illness.

If my first column was about finding hope, then this one is about getting well and living well with fibromyalgia. I hope that you will be inspired by my story and know that there is a way for you to reclaim your lives from the devastating illness that is fibromyalgia.

For years I felt alone. I am not alone. Neither are you.

In 2003, I knew something was very wrong when I could no longer effectively do my job as a social worker. ​I was in constant pain, had a 24/7 headache and migraines twice a week or more, and could not fully concentrate. Insomnia and anxiety had me awake most nights.

Desperate to get well, I spent half of my paycheck on herbs, supplements, massage, hydrotherapy, acupuncture, chiropractic, ​Rolfing​and Reiki​. Nevertheless, I continued getting worse. When I could no longer afford alternative treatments not covered by my health insurance, my body crashed.

Having suffered from unrelenting migraines for months, my final career ending moment came when my back and neck spasmed, causing me to fall to the floor in my office at work. I remained on hands and knees for 20 minutes before being able to crawl to my desk to pull myself up.

I do not remember driving home, nor did I realize that moment signaled the end of my 20-year career as a social worker caring for those with disabilities (ironic, I know).

I was diagnosed by my doctor with fibromyalgia, chronic pain, severe headaches and migraines, light and sound sensitivity, depression, insomnia, anxiety and PTSD. 

The Guaifenesin Protocol

LYNN PHIPPS

Over the next decade, it became my job to research and find help for my condition. The problem was that none of the specialists looked at fibromyalgia as a cause for all that I was experiencing. And not one physician ever looked at food allergies or diet as a potential cause, even though I have a family history of diabetes.

That is significant because 44% of “fibromyalgics” also have a second and separate disease called hypoglycemia.  Another 15% of fibromyalgics have hypothyroidism, another disease with overlapping symptoms, including fatigue, muscle pain and impaired memory, to name just a few. I am unlucky enough to have this grand trifecta of illness. 

With nearly all hope gone, an internet search for headache specialists in northern California led me to Dr. Melissa Congdon, a fibromyalgia specialist. ​​It was through her that I finally understood that the headaches and migraines were related to the fibromyalgia, and not whiplash from a car accident or a repetitive motion injury from work, as every doctor and specialist had assumed. 

During my first appointment, my fibromyalgia diagnosis was confirmed by Dr Congdon. I was also diagnosed with hypoglycemia. Again, this is significant because about half of us with fibromyalgia also have hypoglycemia, with overlapping symptoms such as fatigue, pain and impaired memory.

In order to get our health back, these two separate diseases require two separate treatments: Dr R. Paul Saint Amand’s Guaifenesin Protocol and his HG Diet for fibroglycemia.,

The protocol requires taking the expectorant drug guaifenesin (Mucinex), which clears airways in the lungs and helps the kidneys reduce the buildup of inorganic phosphates in the body. The low-carbohydrate diet combats low blood sugar, which mimics many fibromyalgia symptoms.

Within 2 months of following the protocol and diet, I began to see improvement in generalized body pain, headaches and migraines, chronic fatigue and brain fog. After 20 months, I got “me” back, and so did my family. 

Many people have mentioned that they do not want to follow the protocol because they have heard that it will make them feel worse. To this we say, “It’s pain with a purpose.”  We strive for finding our own individual dose of guaifenesin that will leave us “functionally” worse, not incapacitated. As long as we do nothing, the phosphates will continue to accumulate throughout the body, causing fibromyalgia symptoms to continually worsen.

The Guaifenesin Protocol will clear the offending phosphates from our kidneys at a rate of approximately​ ​1 year of symptoms in just 2 months. I was symptomatic for 10 years before starting the protocol and had reversed all of my symptoms within 20 months. By the first year on the protocol, I was off of all pain medication. 

My Awakening

The 13 years that I spent bed-bound seem like a bad dream. It was quite an adjustment getting my health back after so much time. It felt as if I’d been existing in a semi-comatose state. While I’d been so ill, my mother passed from pancreatic cancer and both daughters moved out, graduated from college and started their adult lives. 

I had physically been there for all of that, but with such severe fatigue and brain fog, it all had a feeling of unreality to me. Upon “awakening” I was shocked by my appearance, as I’d been only 38 when I got sick and had “awakened” at age 51. My husband and I had to get to know each other all over again. Luckily, we fell in love all over again. 

After the brain fog and severe fatigue had cleared, I wanted to go back to work, but I knew that I could not be a social worker again. Many fibromyalgia symptoms are brought on by physical or emotional trauma. The stress of being a social worker ruled that out, so I decided to do something quite different. I put my years of watching HGTV while bedbound to use by becoming certified in home staging and redesign.  I enjoyed a successful home staging business for 3 years before retiring.

I now spend my days educating others on the Guaifenesin Protocol, helping those still suffering from fibromyalgia get their lives back, too.

(Editor’s note: For a contrarian view on the Guaifenesin Protocol, click here.)

Lynn Phipps lives in northern California. Lynn has created a website called Living with Fibromyalgia to assist beginners in getting started on the Guaifenesin Protocol.

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

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.

Why Does Treating Chronic Pain Cost So Much?

By Carol Levy, PNN Columnist

Five weeks ago, I had a deep brain stimulator implanted in a last-ditch effort to relieve my trigeminal neuralgia pain or at least make it more acceptable.

Prior to the surgery, I was required by Medicare to be evaluated by a neuropsychologist. His personal conclusions about me, plus some standardized cognitive testing, would decide if I have the cognitive ability to understand the surgical risks and the procedure itself. He also decides if I am mentally sound enough to tolerate the operation and all that goes with it.

I have not yet received a bill from him, but based on other costs I would expect the 2 to 3 hours I spent with him to cost around $300-$500.

Why is this? Why waste the insurance company's money, my time, the doctor's time, and if I have a copay, my personal money? My neurosurgeon should be aware enough and savvy enough to make such determinations.

I have had other brain implants in 1986, 1987 and 1991. At the time, they were a relatively new procedure and the risks probably worse given their newness.

But my neurosurgeon was fully able to make his own decisions as to my ability to understand and emotionally tolerate the uncertainty and risk.  It was required then, as it is now, that the patient have a trial period of 7 to 10 days between temporarily implanting the device and putting it in permanently. If the patient doesn’t see a benefit, then the implant is determined to have failed and not worth a permanent implantation.

That is all well and good, except for the fact that some patients do not see any benefit or change in the pain for two, three or sometimes up to 6 months.

By having to endure a trial, the patient has to go through 2 surgeries, 2 general anesthesia, and at least 10–14 days in the hospital. The cost to insurance is gigantic. The cost to the patient potentially even higher:

My first implant had no benefit at trial, but my surgeon went ahead with the permanent implantation anyway. After about a month I told him I was having no benefit. We agreed he should remove it. But until I made a date to do so, for some reason, maybe because it never occurred to me to turn it off, I left the implant on.

My trigeminal neuralgia at that point was so bad I had to get my face washed under general anesthesia every few months, as any touch to the affected area of my face was torturous.

One morning, three months after the implant, I stepped into the shower, a drop of water hit my face and there was no pain! I could touch that area of my face and the spontaneous pain and the background constant pain were all gone. Had the implant been removed because of the failed trial, I would never had had the opportunity to have that relief.

How many times have we been told by a doctor to try a treatment, medication or therapy that we have already tried to no avail? How often has insurance required us to try the cheaper drug first, by virtue of "step therapy" also known as "fail first"?

Chronic pain has been estimated to cost the U.S. over $635 billion annually in medical expenses and lost productivity, which is more than the cost for cancer, heart disease and diabetes.

Why is it that chronic pain costs the country so much? Maybe if we got rid of some of these “requirements” and just let doctors and patients do the deciding, the costs would go down.

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.

This column is for informational purposes only and should not be considered as professional medical advice, diagnosis or treatment. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Tell the Truth About the Opioid Crisis

By Kathleen Harrington, Guest Columnist

There are so many untruths being reported about this false opioid crisis. I never read the truth about the REAL problem.

I’ve been a chronic pain patient for over 25 years, living with chronic cervical pain, degenerative disc disease, cervical lordosis, stenosis, lumbar scoliosis and bone spurs. Like so many thousands of others, I had my pain medication and quality of life ripped from me.

None of my questions were answered and I was never given a reason why I was losing my meds. I was ignored as the doctor turned and walked out of the room.

I had great pain control for 25 years. I followed all the rules, passed all the drug screens, never tried to refill my scripts early and never claimed they were “stolen” to get more. Now I am the patient that no one wants. As soon as it is known that I need pain meds, a wall goes up.

The medical profession tossed us all in the garbage. The persecution of people with chronic pain is everywhere in this country. Prescription meds are not the problem and never were.

Now I see there are doctors asking for donations from us in their fight against being prosecuted by the DEA simply because they write a high number of valid opioid prescriptions for their patients.  

Where were they when the CDC Guidelines came out in 2016 and most doctors took them as new laws? They certainly didn’t have our backs then.

KATHLEEN HARRINGTON

And what about the threatening letters the DEA sends to physicians about prescribing controlled substances? ILLEGAL drugs are the drugs killing people! Instead of fighting the real fight, chronic pain patients, the disabled and our vets have been the scapegoats. We have been denied the medications that allowed us to have productive lives, raise our kids, work and take care of our homes, just have a nice life with our pain controlled. Who will tell the truth finally? 

We have followed the rules with our meds and this country is catering to the addicts with compassion because they have an addiction. Are you kidding me? Chronic pain patients don't get high off their meds. We take them to live without pain as much as we can.

The medical profession and the rule makers in this country are despicable. The overdose deaths are not from patients who have been taking these meds the way they have been prescribed for years and decades in some cases. Tell the truth!

Heroin is hitting the streets at an alarming rate and this country is okay with that. Something very wrong here. Very wrong. Could it be that the opioid epidemic that started with local news showing junkies nodding off (or dead) in their cars with little kids in the back seat was blamed on pain patients because we can be found with the click of a mouse?

My God, in Pennsylvania there will soon be a “safe injecting site” where addicts who have purchased their illegal heroin can go and shoot up!  Just in case they overdose on too much or tainted heroin, they can be revived. All the sympathy is for the poor addict who CHOOSES to do a drug that they know is addicting or could kill them in seconds.

We did not choose to have conditions that cause us pain. We just want to enjoy our lives, family and contribute to society. If a chronic pain patient goes to the ER with intractable pain, we are turned away and literally labeled drug seekers and addicts in the system. The addict who goes to the same ER is treated with compassion and offered treatment.

For myself, I am not confident that things will change. The insurance companies and the doctors’ malpractice insurance are now dictating what patients can have and how much. The state licensing agencies are also advising what meds can and cannot be prescribed.  

I found a medication that worked very well on my neck pain and constant muscle spasms, but I am not allowed to have it any longer. The reason is that this medication is, along with many others, abused on the street. That is exactly what I was told. Way too many people are deciding what is best for me, and it is not my doctor. She really has no say in what she can prescribe to me.  

I really don’t have any hope of enjoying this stage of my life with proper pain control. After working all my life, I am looking at years of suffering. This treatment is against our human and civil rights, but no one seems to care. Seems we are nothing but a burden on this country and the healthcare system.  

How many more chronic pain patients who have had their meds yanked from them with no warning or explanation have to commit suicide from uncontrolled pain? 

Kathleen Harrington lives in Michigan.

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

This column 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.

WWE Superstars Use Stem Cells to Smackdown Pain

By A. Rahman Ford, PNN Columnist

As a child, I was a big fan of professional wrestling. While I don’t follow it as religiously as I used to, I have noticed a rather interesting trend. Several former wrestlers are opting for stem cell therapy to heal painful injuries. And some travel to foreign countries to get stem cell treatments they can’t get in the U.S.

Many people consider professional wrestling a fake sport, but to wrestlers their injuries are very real. Bleacher Report’s Ryan Dilbert has reported on the toll wrestling can take on the body.  He recalled how Diamond Dallas Page was “power bombed” by Kevin Nash, rupturing two vertebrae in his back.  Page was injured so badly he couldn’t finish the match.

"I was in excruciating pain," Page said. "I was on my back, and I crawled to the corner. I didn't go back in the ring."

Three-time World Wrestling Entertainment (WWE) women’s champion Beth Phoenix once finished a match with a broken jaw.

"Fans may see us once or twice a year," said Phoenix, who is now retired. "They don't realize that we go on these grueling tours. We're on the road 300 days a year. There's no recovery time. It's a test of your physical and mental endurance."

A 2014 study in the journal PLOS One found that professional wrestlers had “an alarmingly high premature mortality rate.” Wrestlers were 4.5 times more likely to die than the general population. The authors cited chronic pain and drug addiction as likely culprits.

“It is reasonable to assume chronic musculoskeletal injuries resulting in abuse of pain-relieving prescription drugs play a role in the premature drug-related deaths and possibly suicide among some wrestlers. It is also plausible that the painful injuries are self-treated with high doses of non-steroidal anti-inflammatory drugs (NSAIDs),” they said.

Consider what happened to these three professional wrestlers:

Former Olympic gold medalist Kurt Angle became addicted to painkillers after he fractured his back. At his worst, Angle was taking 65 extra-strength Vicodin a day.

Former WWE Superstar Lance Cade became addicted to hydrocodone after suffering a shoulder injury. He died six months after completing a drug rehab program, with hydrocodone found in his system at the autopsy.

Former WWE Superstar Ashley Massaro committed suicide in May of this year. The 39-year old suffered from migraines and bouts of depression, which she maintained were a result of wrestling injuries.

“WWE used narcotics as a tool to allow me and other wrestlers to perform through our injuries. If we took enough pills the pain went away (temporarily) and we were able to wrestle. Obviously, this worsened our injuries and required us to take more pain medication the next time,” Massaro said in an affidavit for a recently-dismissed federal lawsuit.

‘Substantial Benefit’ From Stem Cells

Some professional wrestlers are turning to stem cell therapy as an alternative to pain relievers. WWE Superstar Ronda Rousey received stem cells to treat an ACL injury to her knee.  In a documentary, Rousey said the damage to her knee was so severe that for several years she could not even comfortably step backwards. Rousey says stem cell therapy “really helped a lot.”

IMPACT Wrestling World Champion Brian Cage recently traveled to Colombia for stem cell treatment for a back injury.

“The injury was awful. One of the most painful moments of my career. I literally thought my career might be over,” Page told the Lords of Pain. “I was doing everything under the sun to try and recover from that, including going to Columbia and getting the stem cells, and I do believe it did have a substantial benefit to it.”

Wrestlers Melissa Santos, Rey Mysterio, Ryback and Angle also made the trip to Colombia for stem cell treatments. Ryback says he is now 100% healed. And Angle recently told fans on Facebook that he’s doing better.

“My shoulders feel great. My neck and back are struggling a bit but I’m optimistic about them getting better just like my shoulders. It usually takes 3-6 months to feel improvement. It’s been 2 months,” Angle said.

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.

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

This column is not intended as medical advice and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

My Healing Journey With Chronic Pain

By Mia Maysack, PNN Columnist

The first time people told me that pain begins and ends in our minds, I was just thankful there wasn't a comic book bubble over my head -- demonstrating my thought of punching them in the face.  

But I sat there to humor them, hooked up to a machine that measured my heart and other vital signs. The irony in that moment is that the provider told me to purposefully think of something upsetting to see how I’d respond. 

I could see on the screen that my blood pressure increased. I remained polite while shoving the thought aside as to how draining this office visit was and whether it was a complete waste of time. It’s so disheartening to live like we do in the first place, but then to have an appointment that makes you feel even worse than you did on arrival.

After the Doc realized I was upset, it was brought to my attention that if I'm in need of "that sort" of help I should see another type of doctor. It got even better with the suggestion on my way out the door that I should “be positive and try visualizing an ocean -- that helps!"

That’s when I made the decision to incorporate my medical background with my passion for healing and began venturing into holistic health.

Part of the training to become a “certified life coach”' is to get one for yourself. It felt awkward initially, preparing to connect with a stranger.

But between being fed up with the traditional route and reaching a point of desperation where I'd do just about anything, this connection would serve to be one of the most important contacts of my life.

My career plans had experienced multiple screeching halts over the years, whether I attempted nursing or teaching. I went back and forth quite a bit, trying to find a way to make either of them work in any capacity. But the outcome remained the same because of my physical pain, chronic fatigue and persistent illness.

Even though I am no longer able to run the hospital floor for multiple shifts or teach a classroom of 30 students, I do still possess my course work in medicine and years of work experience, not to mention firsthand experience as a patient with the healthcare system.

It was during the first phone call with my coach that the concept of energy was shaped in a new way. It was explained how our bodies not only feel and respond to experiences, but also essentially tracks them. They get stored in our physical beings and we carry them with us, for better or worse.

I began reflecting on everything I'd planned on telling this person. How I got sick at a young age and almost died. How I went through years of rehabilitation while losing the ability to pursue my passions in life. How I’ve had relentless pain no one could possibly begin to fathom. And that I'm still mourning identities that once made up who I am. 

It struck me that none of that mattered anymore because what I chose from that moment forward is what really counts.  

At a meeting recently, I was asked about my healing journey. I explained that we must first reach our lowest point of being sick and tired of being tired and sick, and then consciously move forward — making the decision to do whatever is necessary for our own sake no matter what.

I showed them what this looked like for me: bawling my eyes out in a fetal position on the cold hard floor, begging the universe for relief, and not knowing how or if I'd be able to go on. 

We're enduring a personal hell on a continuous basis that most regular folk wouldn't be able to handle.  As far as emotions getting the best of me, they don’t anymore because I've grown to be more self-aware through the inner work that I've committed myself to.

It hasn't fixed or cured anything, and it'll continue to be a pursuit for the rest of my days. But I feel safe within my body and mind for probably the first time ever. Security is another thing we can lose as part of the pain experience. 

Nothing is nor will it ever be perfect, but I have come an extraordinary long way. I'm proud of that and believe in these concepts. I've never had more physical discomfort than I do these days but with these tools, I've also never been able to manage so well until now.

We must re-shape our perception of healing and recovery on the other side of fear. And when we're able to make it through the darkness, it then becomes our responsibility to light the way for others. It doesn't make it any easier, but we are stronger together.   

Mia Maysack lives with chronic migraine, cluster disease, fibromyalgia and arthritis. Mia is a patient advocate, the founder of Keepin’ Our Heads Up, an advocacy and support network, and Peace & Love, a wellness practice for the chronically ill and those otherwise lost or hurting.

The information in this column 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.

Consumer DNA Tests Do Not Accurately Predict Disease

By Dr. Lynn Webster, PNN Columnist

Three years ago, I gave my family members DNA kits as Christmas gifts. I thought the genetic health aspects of the test would be an entertaining exercise -- a bit like visiting a psychic who would read tarot cards to predict the future. I didn’t think of it as a serious medical test, and I made sure my family understood that.

These kits have become very popular. More than 26 million people have taken an at-home genetics test, hoping to learn more about their ancestral background, along with their risks of developing certain diseases. But the tests may not live up to either of those expectations.

The U.S. Government Accountability Office (GAO) sent a report to Congress in 2010 alleging that some DNA testing companies used deceptive marketing and other questionable practices. 

The GAO stated that results from DNA tests were “misleading and of little or no practical use.” Their investigation also uncovered the fact that different DNA testing companies provided different results from the same sample. 

Not only were the test results dubious, but the companies made some deceptive claims. One company alleged the results from their testing could help cure diseases. Another claimed the data could predict at which sports a child would excel.

Admittedly, the accuracy of the tests has improved since 2010, but the tests still are, at best, imperfect.

Our genome (the whole of our hereditary information, encoded in our DNA) contains about three billion genes. Of those, only about 20,000 are responsible for disease. But we are more than our genes. Whether or not we will get most diseases depends on a combination of our genes and environment. This interaction of environment and genes is what we call a phenotype.

Of course, there are genetic mutations that are responsible for specific diseases. Single-gene mutations are responsible for about 10,000 diseases, the majority of which are considered rare. Some of the more common single-gene disorders include sickle cell anemia, cystic fibrosis, phenylketonuria, and Huntington's disease.

However, there is no guarantee that direct-to-consumer DNA kits are capable of detecting all common single genetic mutations. Moreover, the absence of a reported mutation from these kits does not mean the mutation does not exist.

Testing may uncover some benign and interesting traits, though. For example, some genetic kits (but not all) can tell you if you have a gene associated with how your earlobes are shaped, whether your urine has an offensive odor after you eat asparagus, or if you are inclined to dislike cilantro.

The accuracy of the health-related portion of the tests is improving. It is now possible to test for genes that predict a person's risk for certain types of breast and prostate cancers. However, placing too much weight on the results of those tests can be dangerous. For example, the tests do not screen for all types of breast cancer, which can lead consumers to falsely conclude their risk of all breast cancers is low if their test results do not indicate a gene mutation associated with breast cancer.

At best, the types of DNA tests that provide information on single-mutation diseases should be accompanied by appropriate genetic counseling. Since most diseases are based on multiple genes and environment, a genetics counselor can help put the test results into perspective.

Deciding how to use the information may be more important than knowing the results of the test. In medicine, we never order a test unless it will help us provide better care for our patient. This may be an important principle to apply here as well.

Privacy Is a Big Concern

We should also be very concerned about how our DNA data will be stored and used. The testing companies' DNA databases can be hacked by people with nefarious motives, or shared with insurance companies or law enforcement. Laws protecting consumers are evolving, but clearly, at-home DNA tests expose consumers to unknown and, perhaps, unintended consequences.

DNA tests were first pitched to consumers as a way in which they could learn about their ancestry. However, the reference data sets were largely European and less accurate in showing lineages in other areas of the world. If your roots were Asian or African, the reports were less likely to accurately reflect where your ancestors lived.

Over time, the data sets have improved and expanded, so consumers with non-European ancestry may get more accurate information about their heritages now than they would have previously. That trend will likely continue.

Whether DNA kits are mostly a gimmick, I cannot say. But it is important to recognize their limitations in providing trustworthy information about our health or ancestry. Certainly, we should not base health decisions on their results, and I would think twice about paying for the privilege of delivering my DNA profile to a for-profit company.

Maybe this year I’ll just give everyone tarot decks.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is the author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.”

You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences or Pain News Network.