5 Real-Life Tips for Traveling with Chronic Pain

By Crystal Lindell

One of the best things about my job is that after I got sick I got to switch over to a work-from-home arrangement. Honestly, if it wasn’t for this, I probably wouldn’t have a job right now.

However, there is one caveat. I have to travel. A lot. And while normal people probably think of business trips as a glamorous affair involving lots of great Instagram shots, anyone with chronic pain will tell you that they’d pick a day on the couch watching Netflix over a two-day business trip to North Carolina any day of the week.

But all of us have to go places sometimes, whether it’s a vacation to Mexico or a flight to the Mayo Clinic, so dealing with airports and the TSA isn’t always something we can avoid.

There are a few things I’ve learned on all those business trips that help me cope with it all.

So here’s some tips for navigating swollen feet, the medications in your carry-on, and window seats.

1.  Check your bag

This is definitely the most important tip I can give you.

Yes, on most airlines it costs a little more, but that’s why God invented Southwest and it’s free checked-bag policy.

And yes, sometimes you get to your hotel only to discover that the mirror in your $32 Urban Decay Naked Flushed compact somehow broke in transit. But there are other mirrors.

And not having to deal with luggage can be the difference between arriving in Phoenix feeling like you’ve just been involved in a plane crash, and arriving in Phoenix feeling like you just got up from a really great nap.

From a practical standpoint, checking your bag means you don’t have to drag it to your terminal or deal with lifting it up into the overhead bin while desperately looking around for help from the other travelers, hoping one of them has the magical ability to see your invisible illness. 

And it also means that you’re free to be one of those carefree people boarding the plane holding just a purse and a cell phone. Trust me, it’s the only way to fly.

2.  Put all your medications in your carry on.

No, seriously, all of them. Even that one you only take right before bed that you don’t think you’ll possibly need before you arrive. And that other one that you definitely don’t think you’ll need because you only take it on Wednesdays and today is Thursday.  

While regular people with regular health may think it’s a no brainer to carry-on all your pills, that’s not the case for us. People who deal with chronic pain have a legit chance of needing  23 different prescription bottles daily, so downsizing a carry-on bag by putting a couple of them in the checked luggage doesn’t seem so crazy. Unfortunately, there are so many things that can go wrong.

They could lose your luggage. Or you could miss your connecting flight. Or zombies could attack. So it’s just better to have that hydrocodone in your purse just in case.

And if any of the TSA agents try to give you crap about all that morphine you carry around, just show them your name on the prescription bottle and say, “No, yeah, these are mine. Sorry about that. Thanks for asking though. And also you’re doing a really great job here.”

Because you don’t want to be rude to a TSA agent — those guys have power over the terrorist watch list.   

3.  Buy the huge Fiji water bottle and drink all of it

The thing is, if you have chronic pain, all those warnings about drinking water to stay hydrated in the sky are even more pertinent.

Sleeping pills, nerve medications and opioids all have the fun side effect of dehydrating you all by themselves, so when you add in recycled air and cabin pressure suddenly you’re so thirsty even a caffeine-free, diet, generic Coke sounds good.

And, here’s what nobody tells you about that — all that dehydration and sitting on a plane in seats too small to bend your ankles makes your feet swell up. It’s a real thing. And it sucks.

So yeah, water, it’s important — especially if you’re planning to wear flip-flops on your trip.

But, as anyone who’s ever had to go through security at the airport will tell you, it’s impossible to get a bottle of any kind of water through the X-ray machine. So if you want to stay hydrated you have to buy something after the checkpoint. And personally, I like to use it as an excuse to splurge on one of those completely impractical square bottles of Fiji.

Hey, if you have to buy a bottle of water, you may as well buy the one that tastes like it came from the Garden of Eden.

4.  Pack dry shampoo and skip the showers

When you do finally get to L.A., the Mayo Clinic, or your grandma’s house, the very best thing you can do is skip the shower and just spray a crap ton of dry shampoo on your bangs. Seriously, this has been the BIGGEST lifesaver for me when traveling.

Chronic pain has this way of turning simple showers into some sort of extreme marathon mud run through the Amazon. And while normal people might think they should be fresh and clean when they have a business meeting, people with chronic pain know that it’s more important to actually show up to said business meeting.

Skipping the shower can preserve precious energy that will help you endure the trip, or, you know, maybe even have some fun later on — assuming your sleeping pill hasn’t kicked in yet.

5.  Go for the window seat

Even with the pain and the pills and the swollen feet and the missed connections, travel is still travel, and getting to ride on a plane is still pretty cool.

Honestly, window seats aren’t actually practical at all. It’s just that much harder to get up and use the bathroom after downing all that Fiji water, and you have nowhere to run when the old dude sitting next to you starts hitting on you hard core 5,000 feet in the air.  

But, window seats are something more important than practical — they’re fun. All you have to do is glance out the window and you’ll get a view most people in human history have never had the chance to experience — whether it’s a blanket of pure white clouds, a bird’s eye look at the people who call this planet home, or just a great play-by-play of the machine you’re riding in gliding toward the heavens.

It’s pretty incredible when you think about it.  

And sometimes, every once in a while, something almost magical happens, and you end up in a window seat, in an exit row, AND nobody sits next to you. It’s not quite first class, but it’s close enough.

And when you finally get to wherever you’re going, you can toss that empty bottle of Fiji into the recycling bin, grab your checked-luggage off the carrousel, throw on some sunglasses, and tackle your trip like the chronic pain warrior you are.

Bon Voyage!

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

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

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

The Painful Truth: How Patients Are Treated Shamefully

Lynn Webster, MD, is past President of the American Academy of Pain Medicine, vice president of scientific affairs at PRA Health Sciences, and one the world’s leading experts on pain management. He treated people with chronic pain for more than 30 years in the Salt Lake City, Utah area.

Dr. Webster’s new book, “The Painful Truth,” is a collection of stories involving several of his former patients, who struggled with the physical, emotional and financial toll that many chronic pain sufferers experience.  

Pain News Network editor Pat Anson recently spoke with Dr. Webster about his book.

The interview has been edited for content and clarity.

Dr. Lynn webster

Anson: Dr. Webster, you’re no longer practicing medicine, but you’re still very involved in the pain community and in research. Why write this book now at this stage of your career?

Webster: It takes a lot of time to write a book, as you can imagine, and it’s taken me four years to get to this point.  I think that at this stage in my career I can look back and put together a story about the people who I’ve taken care of for most of my career that I’m not sure I could’ve done in the middle of it. I think that’s given me the ability to look back and reflect and feel the heartache that patients have, and my inability to deliver to them everything that I wanted to deliver to them, because of all of the barriers and obstacles in healthcare.

I’m hoping that my book is going to be a seed that will contribute to a cultural change, a social movement that will bring some dignity and humanity to a large population of our country.

Anson: In your book you said the painful truth is that people in pain are treated shamefully. What did you mean by that?

Webster: When I was growing up on a farm I observed something as a young boy that always puzzled me and that was watching the injured or sick animals. We had all sorts of animals; cows, pigs, sheep, and chickens, and I could see that the injured somehow were always separated from the healthy ones. It wasn’t that the sick separated themselves from the healthy, but the healthy separated themselves from the injured or the ill.

I see that to some degree in people and I wonder if this hasn’t been a biological aspect of survival for man from the beginning. We as humans are better than that; we’re better than we may have been thousands of years ago.

Today, I think that it is shameful that people are stigmatized because they have pain, they’re isolated, and they’re denigrated often. Because of our healthcare system, at least in this country, they’re viewed as addicts, lowlife’s, and druggies. That’s rarely true and it absolutely prevents, it really contributes to the harm that pain sufferers feel towards themselves and their inability to get the type of care they need. I think that it hurts our society in so many different ways, but most importantly the people in pain.

Anson: A lot of your book is dedicated to telling the stories of some of the pain patients that you treated. Virtually every one went through what you just described, where they had trouble getting proper treatment, they had trouble with their jobs, with their families, and with their friends. Is that why you write the book in this way, so that their stories get across the point you’re trying to make?

Webster: Absolutely. It’s less important that a physician tells a story than a patient tells their story. I wanted this book to be felt by the readers, to understand what people in pain experience and the struggles they have.

Anson: You wrote that, “People in pain need to be both treated by medical professionals and supported by all the important people in their lives.” Is that happening?

Webster: No, of course not. There are some patients that have pain who have great support structures in their personal life. For example Alison, she is an individual who had what I thought was the quintessential family support. Were it not for her mother, father and sister, she could’ve gone down the path that too many others take, which would be resignation rather than resilience. It’s one where drugs are used to cope and to escape the pain, physical but also the emotional.

Too many people are separated and too few have the structure of the support system that Alison had.  Our healthcare system is abominable. It shamelessly abandons them with limited resources, limited access and actually a labeling of the individual as if they’re a leper; they have a disease that is contagious.

Anson: Is the average physician in U.S. prepared to treat chronic pain?

Webster: No. I think it’s been reported that medical schools average less than 10 hours of education on pain and even less for addiction. Yet this is the number one public health problem in America and it’s not recognized by the CDC like many other disease states have been.

And so very few physicians understand what pain is. In fact, many think that it’s just a symptom and you never die from pain which is categorically wrong. As I write in my book, pain can be as malignant as any cancer and it can be just as devastating. It can take the soul but it also takes the life of some individuals when we ignore it and when we’re unable to provide them the relief that they deserve.

Anson: If you were a young man again in medical school and trying to decide what specialty to go into, knowing what you know today, would you go into pain medicine?

Webster: Without a doubt, there is no hesitancy in this response; I love the field that I’ve been in. As an anesthesiologist I could’ve stayed in the operating room and honestly the compensation of doing that would have been far better than the path that I chose. But the rewards I’ve received from trying to make a difference and the thank you’s that I’ve received will never be matched by any kind of financial or professional recognition in any other areas.

The most rewarding part of life is really to be able to make a difference in someone else’s life. And I think I’ve been able to do that with hundreds, if not thousands of individuals. That actually is the reason for the book. I’m hoping the book is going to make a difference for more people than I could physically touch in my clinic.

Most of the people that I saw as patients were already experiencing a large amount of pain, they’ve been through the mill and many had their chronic pain for years before they came to see me. We are basically going to be taking care of them the rest of their life. We do get to know them, much like a primary care person does to a family they’ve been caring for, and so we get to know them well. They get to know us. We also begin to see the struggles that they have in the system and with the rejection of their families sometimes, their friends, the isolation. And we become the only source that’s grounded, that gives them potential hope. I took that very seriously and I think that’s why it was so rewarding for me.

Anson: You wrote that you’re neither pro-opioid or anti-opioid. What do you mean by that?

Webster: My focus has never been about making opioids available or that they should be used. In fact ten years ago I started the first national campaign about the risk of opioids. My campaign was called Zero Unintentional Overdose Deaths and you can still find that on the Internet. I did a lot of work at trying to understand the potential risks and mitigate those risks so we can prevent people from harm because I knew one day that if we couldn’t prevent people from being harmed from opioids that there would be political response to this that could be very harmful to a large number of people who are not harmed by opioids.

I think the focus should always be about what’s best for a patient and not about whether a drug or a certain treatment is good or bad. All treatments have potential risks and complications, and we need to evaluate whether or not the potential benefit outweighs the potential risk or harm and it has to be patient centered. So my focus has never been about really any treatment, but it’s always been about what’s best for the patient. I’m more anti-pain than I am pro or anti-opioid.

Anson: You prefer a multi-disciplinary approach to pain treatment?

Webster: Yes, it’s been demonstrated that for people with moderate to severe chronic pain, the type that’s not likely to be resolved, it is best managed in a multi-disciplinary, integrative approach. I see the need for more cognitive behavioral therapy. We should always tap into the different treatments that have low risk associated with them before we ever tap into something that has more risk, for example opioids or even interventional treatments we as anesthesiologists and some of the other pain specialists can provide.

Much about pain is really learning how to cope, how to deal with it from day to day and how to manage the stress that’s associated with it because stress augments all pain. And so it’s really important that we use all of the resources that we have to manage the pain and not just a single modality, certainly not opioids or spinal cord stimulators, but look at how we can manage this in a more mindful way, even as clinicians. I use that word intentionally because mindfulness is really what the doctor needs to use as much as the patient in order to optimize the treatment with the lowest risk.

Anson: Has the pendulum swung too far against use of opioids?

Webster: I think there’s too much focus on opioids by almost everyone. And what it has done is it’s forgotten about people. Opioids can cause a great deal of harm, we see way too many people harmed from opioids. But certainly a vast majority of people who have been exposed to opioids are not harmed by them and there are countless number of people, a huge number of individuals who have been on opioids for decades, that believe very strongly that they’ve improved their lives and they could not live without them.

I think the focus is in the wrong place. Our focus should not be on opioids and whether they should or should not be prescribed, but what is the best treatment for the patient? And if opioids are inappropriate as a pain treatment, then I say all of the anti-opioid people as well as the individuals who are interested in helping people with pain should come together and demand that we have more money invested in research so we can replace opioids entirely.

We cannot always know who’s going to have an addiction triggered by exposure. As I pointed out in my book, Rachel just went in for an appendectomy and that initial opioid that she received lead her down a serious, dreadful path because she didn’t have the social support to keep her from taking that path.

I think that the anti-opioid people and those of us who are interested in bringing some dignity and humanity to a large population of people in pain need to come together and insist that we have a Manhattan Project basically and to discover safer and more effective therapies that are not addictive.

Anson: The final version of National Pain Strategy will soon be released, with the goal of advancing pain research, healthcare and education in the U.S.  From what you’ve seen and heard so far about it, are they on the right track?

Webster: Yes, I think it’s an important step forward. I think that it brings most importantly the government into the picture, recognizing the need that we do something on a national scale and that alone is a big step forward.

It’s kind of like in my book there are three important words, “I believe you.” This is really the way the government can say, “I believe you.”  There is a problem in this country with the way in which we treat pain and the National Pain Strategy is about how they’re going to address that. Having the federal government say I believe you, there is a problem, let’s see if we can change the way pain is treated in this country is a huge step forward.

Anson: Thank you, Doctor Webster.

You can follow Dr. Webster on his blog, and on Twitter @LynnRWebsterMD, Facebook and LinkedIn.

Life in the Waiting Room

By Pat Akerberg, Columnist

I wonder how much of our lives we spend standing in lines or sitting in rooms waiting.  Thanks to the intractable pain of trigeminal neuralgia and severe surgical complications, it seems that my life has morphed into one big waiting room.  

For the last few years I’ve had lots of cause and reason to speculate about what purpose waiting might serve, besides trying ones’ patience in a world where everything is measured by speed, action, progress and the like. 

Usually waiting brings those things to a halt temporarily.  In fact, Webster describes waiting as a form of being “temporarily undone.”  We consider that kind of short interruption typical.   However, when being temporarily undone turns into becoming permanently undone, how one lives and copes presents a major challenge.

Normally, when we wait we stay in a place of readiness or anticipation until something expected happens or someone arrives.  Things that fit this kind of waiting are sitting in doctor’s offices waiting to be seen, waiting for our reservation at a restaurant, or waiting to advance to the front of a line.  

So expectation, anticipation, and hopefulness are typically attached to our investment in waiting. But those very hopes also have the capacity to backfire if the outcomes we desire have been thwarted or become unattainable.     

It occurs to me that the combination of chronic pain and waiting then becomes a form of “endurance” training.  Note the root word “endure." Much like the “blue plate special,” it involves accepting everything on your plate with no substitutions.  You get what you get; or as those of us who have been physically compromised phrase it, “It is what it is.” 

I wait and hope for sleep to come, real sleep without pain strikes.  I wait for my next Rx to be filled, wait for my medication to take hold, and wait to be able to speak or get nutrition in me without triggering facial pain.  I wait to schedule an appointment or test, and then wait until the day comes.  Then there’s waiting to actually see the doctor and get the test results.

Always I wait in the hopes of discovering something that might provide relief, give some encouragement, or suggest a possible new option.  

There are extra long waits for the neuropathy in my arms to calm down enough for me to type.  It takes days of waiting to be well enough to leave the house for a medical appointment or have a friend visit, along with artful calendar management. Afterwards, I often wait until the high price that those exacted subsides.   

It seems I’m always waiting, watching, and wondering all the while how I will continue to carry out this vigil of unrelenting pain day after day, after week, after month.   Scary thoughts like that can produce anxiety in even the most peaceful person.  And just like riding a wave, I wait for those thoughts to recede.

Some say that life is a school full of learning lessons.  Deep down I’ve always disliked that theory.  Having to experience what didn’t go well so you can learn more for “later” seems so backwards in benefit at times. 

That’s because in retrospect I’m aware that some things we learn don’t always offer a mulligan, a do-over, or an apparent way to benefit from the learning.  But despite that hard reality, I still suspect that our pain and waiting must have something to offer or teach us.

Time spent waiting can be repurposed into a personal workout regimen that involves active, conscious heavy lifting of a different kind.  Let’s face it – self care doesn’t just happen; it takes work!

We can learn to make our lessons learned work for us, instead of lying in wait feeling frustrated and held captive by them.  We can resolve to better prepare and focus on what we need from appointments, figure out how to better advocate for our needs, establish some boundaries, and take the hard actions that will best serve us going forward.

Remember the old question, “So, what are you waiting for?”  That question implied a sense of urgency to act and get on with it, whatever “it” represented.  Maybe our particular “getting on with it” is about learning how to step up and master a new set of skills that will strengthen our internal core to better cope with waiting in pain. 

Instead of being permanently undone by waiting, we can turn that time into honoring non-action as a selective way to wisely conserve energy.  Occasional pity parties can be replaced with reflection about what really matters to us.  We can tenderize the resistance that keeps us blocked and willingly open up, allowing ourselves to be nudged toward flexibility and tolerance.  Or use deep breaths and time-outs to relax enough to go with what is for now.     

We can apply all of this while still fervently holding on and searching for better pain relief, waiting for something hopeful to make itself known. 

In the meantime, to quote the famous Austrian poet, Rainer Maria Rilke: “The point is to live everything. Live the questions now.  Perhaps you will, gradually, without noticing it, live along some distant day into the answer.”    

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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

Power of Pain: Check Your Medical Bills for Errors

By Barby Ingle, Columnist

According to a study from The American Journal of Medicine, nearly two out of three bankruptcies stem from some sort of medical debt. How much of this debt is due to errors in medical bills?

According to a recent report by ABC News, one expert claimed to be finding errors on between 80–85% of the medical bills they reviewed. The Joint Commission on Accreditation of Healthcare Organizations and Medical Billing Advocates of America, national associations that check bills for consumers, say 8 out of 10 hospital bills its members scrutinize contain errors.

We tend to budget and work to slash our grocery, clothing, entertainment, and other spending, but forget to cut out-of-pocket medical costs. You can start saving money by checking your medical bills for errors and correct overcharges. Overcharges are fairly common, and correcting them can save you thousands of dollars.

While you may have no control over increases in premiums, co-payments, and deductibles, there's no reason to pay more than you should because of billing errors. Bills from doctors' offices and labs tend to have fewer mistakes, but they do happen. Mistakes can result from typos or deliberate overcharges. 

The National Health Care Anti-Fraud Association, a Washington, D.C.-based group of health insurers and state and federal law-enforcement officials, estimates that at least 3 percent of all health-care spending -- or $68 billion – is lost to fraud.

With a little time and perseverance, you may be able uncover overcharges by keeping a treatment log and reviewing bills as they arrive. Create a log of every test, treatment, and medication you receive. If you don't feel well enough to keep your own record, ask a relative or friend to do it. Even a limited list will make it easier to decipher your billing statements. 

There's no single list of fees you can check as to what your share of the cost is for insurance coverage. Insurers have a separate contract with each of your providers that determines how much they will pay. Therefore, after you schedule a procedure, test, or lab work, phone the providers to ask what they will charge and which Common Procedural Terminology (CPT) codes they will be submitting to your insurer.  

The next step is to call your insurance company to ask for an estimate of the amount your plan will cover and what you'll be responsible for paying. It’s good to get it in writing as verification or, at the minimum, ask the name of the representative and note the date and time of the phone call.  

The first statement you are likely to get is an explanation of benefits (EOB) from your insurance company or Medicare. The EOB statement will tell you the total amount being charged for your procedures, the amount your insurer is paying, and the amount you owe in deductibles and co-payments.

When bills begin to arrive from your doctors, compare the list of procedures with your notes. If you have a question about an item on a bill, phone that provider's office directly for an explanation. If charges are grouped together in broad categories—for example, all lab tests are lumped under one charge -- ask for an itemized bill if further clarification is needed.

If you find a mistake, first call your provider, explain the error, and ask someone in the billing department to make the correction. For each call you make, keep a record of the time, the name of the person you spoke with, and what you were told.

Those may be the only steps you have to take to get the matter settled. If that doesn't work, call an account representative or the fraud department of your insurance company. Next, I would suggest based on personal experience an appeal to your state consumer-protection agency or your state attorney general's office.  

If you can't get the problem resolved before the bill is due, you should pay the part of the bill not in dispute. If you find the disputed bills on your reports as unpaid accounts, write to the credit bureaus to explain the ongoing dispute. Also provide them copies of the EOB, doctor statement and any payments you did make on non-disputed charges. The bureaus must review your complaint and correct your report when proper documentation is provided.

Help protect yourself and your pocketbook so that you can help prevent the dreaded medical bankruptcy situation. So many times people just don’t get the treatment they need because they do not understand our medical billing system, or they get the treatment and overpay or get swamped with medical bills leading to bankruptcy.

Take the steps to protect yourself. A little work today will give you a more stable financial tomorrow and help you get proper and timely access to care as needed.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. She is a chronic pain educator, patient advocate, motivational speaker, best-selling author, and president of the Power of Pain Foundation.

More information about Barby can be found by clicking here.

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

A Pained Life: The Power of the Coat

By Carol Levy, Columnist

I have what I call a "chronic emergency" when, because of the paralysis and lack of sensation in my left eye, it turns bright red and needs to be seen immediately.

The diagnosis is always the same, a dry eye with little punctates throughout. Sometimes in a bad state, sometimes not so bad. It has nothing whatsoever to do with my eye pain -- the trigeminal neuralgia pain that keeps me disabled.

Yet no matter how good the appointment ("Your eye is doing okay," the doctor will say), I find myself always upset, even angry, when I leave the office.

If the diagnosis was bad, the cornea eroded or ulcerated, which can mean having to let them sew it closed temporarily, my anxiety would make sense. The conundrum is, even when the eye is doing fine, I become distraught.

It finally occurred to me there is, in the recesses of my mind, an explanation for the emotional upheaval: I saw a doctor for my eye. Since he examined it, he should have cured my eye pain, right?

The thought is really senseless, but given the power that doctors have, or the power with which we invest them, it seems logical.

When I was in college I had pretensions of going to medical school. Our local hospital had a program for students like me, so we could see what life might be like as a physician.

I was given a long white coat – that usually marked one as a resident or attending. On my lapel was pinned a very prominent name pin. Underneath my name, the words: "Volunteer College Student, Pre-med".

Despite my lowly position, as soon as I put the coat on I felt different, more secure. I stood straighter. I felt powerful. And why not? The coat is a symbol.

As soon as someone walks into an exam or hospital room we make an immediate survey of them. To ourselves we pose the question, "Can I trust this person? Will they help me?" The coat answers the question. This is a doctor, he or she is here to help me.

One afternoon I was in the hospital’s ER when a woman with worsening kidney disease arrived. Her condition was tenuous at best.

Her husband cornered me, "How is my wife doing?"

I pointed to the name badge. "I'm sorry I'm just a college student. You need to talk with the doctor."

As I walked outside he ran after me. "Please. Please. Can't you just tell me? What is going to happen with my wife?"

His eyes tearing, his voice tremulous; the visible, tangible need for me to help him, to save him, was terrifying. Especially because I could be of no help.

Why couldn't, or wouldn't, he hear me? “I can't help. I am not a doctor.”

I truly believed then, as I do now, that the white coat blinded him to my words and repeated denials.  The coat means something. To many patients and their families it is a message of hope; this person will help, will make it better.

My ophthalmologist has the power of the white coat and the title. As a result, I keep expecting the impossible of him -- that he could and should fix my neurological pain.

Power is a scary thing. We have to make sure that when we give someone our trust, because they wear the coat or the title "Doctor," that we leave ourselves room to not expect the impossible or miraculous.

Like it or not, accept it or not, underneath the coat is just another human being. Just like you or I.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

Wear, Tear & Care: The Biomat

By Jennifer Kain Kilgore, Columnist

Some pain relief modalities are unusual to the point that they’re out in the stratosphere. It’s also true that some products only work for some people. Just because a device doesn’t offer visible results the first, second, or even third time doesn’t mean it isn’t working.

That is why I have to keep an open mind and not make snap judgments based on concepts, websites, or promotional material.

Like, for instance, today’s topic: thermotherapy and the Amethyst Richway Biomat.

Amethysts?

Yes, amethysts -- February’s birthstone -- can also be beneficial in thermotherapy.

When speaking specifically about the Biomat, I should warn you that Richway’s website isn’t slick. The idea of amethysts being associated with anything health-related is out of most people’s comfort zone.

But hey, I’ve used the Biomat for upward of five years and fall onto it whenever I have sore muscles, which is constantly. It’s such a fixture in my life that at first I didn’t even think to discuss it. So here we go!

The Biomat. Behold:

This version is the full-body mat covered with a sheet. Underneath my head is the Biomat pillow. Each session can last for five minutes or twelve hours, depending on how much time you have available. The heat can reach temperatures of 158 F° degrees. Read on to find out why that number means absolutely nothing when it comes to treating pain.

The FDA has approved the marketing of the Biomat for a whole host of things: relaxation of muscles, improvement of circulation, temporary relief of muscle pain and/or spasms, and much more. There are specific range settings for certain medical conditions, though it is generally safe.

The science involved came to being when Drs. Erwin Neher and Bert Sakmann discovered how ions flow in and out of cells, which they called the “ion channel theory.” The two scientists revolutionized the field of cell biology and won the Nobel Prize in 1991 for their shared research.

If you’re like me, you have no idea what this means. However, this ion channel theory is put into play by the Biomat’s use of negative ions, which is then complemented by far infrared spectrum therapy (or thermotherapy, like what is found in saunas) and the amethysts embedded in the outer layer of the mat. These stones have been used for thousands of years for everything from fighting the evils of drunkenness to helping with meditation.

In modern times, researchers discovered that amethysts can carry an electrical charge. (Readers, are you still with me? Hang on, we’re almost there!) So, the infrared rays pass through the amethyst layer of the mat and then become “long wavelengths capable of safely penetrating the body as deeply as seven inches.” This heats up your core body temperature, encouraging your body to detoxify.

To put all of this in English: The Biomat creates an environment in which the patient can safely enjoy negative ion therapy and infrared therapy.

What does this mean for the person actually flopped onto the mat? It means a yummy, delicious, low-grade heat. And low-grade does mean low-grade, even if it can reach 158 F° degrees.

One time, my husband wanted to use a heating pad on a strained muscle and cranked it all the way up to eleven: “Honey, I don’t think this is working. I’ve maxed it out and it’s still not warm enough.”

That’s because it doesn’t generate heat the same way a traditional heating pad does. It gets toasty, sure, but you couldn’t cook meat on top of it. At its price point, you certainly wouldn’t want to cook any sort of food on it.

I mean, look at the controls. It’s like the cockpit of an airplane.

For me, the Biomat doesn’t present a dramatic “Before and After” picture. It’s not like Tiny Tim could throw away his crutches after using this product. I can’t think of things I couldn’t do before that, with the Biomat, I can do afterward. Even so, I would never stop using it.

This product is just better than a heating pad. When you hurt all over, you want something that reaches all over. Those of us with chronic pain, we use a plethora of heating devices and creams and patches in order to soothe sore muscles. The Biomat, while extremely expensive, is a full-body restoration and relaxation device. Even the mini mat fits into a chair and covers a lot of real estate.

At the end of a long day, I look forward to sitting on the Biomat. I sleep better when I use it; in the summer, for instance, even a low-grade heat is too much for me, and I go to bed feeling stiffer and more rickety, like a broken marionette. Those are the days I truly notice a difference. Studies have been conducted regarding thermotherapy and resulted in pain decreasing significantly (concurrently with anger and depression). It has even been used to treat cancer.

So does one recline upon the Biomat and come forth as a new person? No, not after one session, two sessions, twelve sessions, or fifty sessions, but you absolutely do feel better. Your muscles are soothed. Your knots unwind, even just a little bit. Your pain is quieted for a time. And that’s enough for me.

J. W. Kain is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

You can read more about J.W. on her blog, Wear, Tear, & Care.  

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.

What Pain Patients Can Learn from JFK

By Crystal Lindell, Columnist

I’ve recently become kind of obsessed with the fact John F. Kennedy had health issues. Like major health issues. Like Addison’s disease, ulcers, colitis, and back pain issues, among others.

It’s one of the few things most people don’t seem to know about JFK. He was sick. Really sick. And he was often dealing with his health while running the country.

The Atlantic detailed some of Kennedy’s health issues in “The Medical Ordeals of JFK” back in 2013. They talked about how while JFK was in the White House he routinely saw an allergist, an endocrinologist, a gastroenterologist, an orthopedist and an urologist. JFK also regularly took amphetamines and had painkillers injected into his back.

In other words, he went through the same things a lot of us with chronic pain go through. Except, you know, he managed to run the Free World between steroid injections.

There’s a part of me that wishes he hadn’t hid his aliments. The article details how his campaign flat-out denied he had Addison’s disease. The day after his election, in response to a reporter’s question, JFK “declared himself in ‘excellent’ shape and dismissed the rumors of Addison’s disease as false.”

Personally, I had no idea that JFK struggled with so many health issues until I stumbled upon the information while researching chronic pain. And from what I can tell, most people in America don’t realize just how sick he was either.

I can’t help but wonder what he may have been able to do for the stigma associated with chronic illness if he had ever admitted to his aliments publicly though. Imagine if the stereotype of someone with chronic illness was JFK.  Sure, it’s a lot to live up to, but it’s better than what we face now, which is usually something along the lines of, “a lazy, druggie who probably brought it on themselves.”

And maybe he could have even helped people understand that cancer isn’t the only bad thing that can happen to you. And that sometimes, you don’t get better and you don’t die — you just stay sick.

But, there’s probably a good chance he would have never been elected if the American public knew he was seeing Max Jacobson, an émigré doctor from Germany who had made a reputation treating celebrities with “pep pills” (amphetamines).

The thing that really strikes me though is just how much JFK was able to accomplish despite his health. Most days, I’m in too much pain to drive to the grocery store, much less run for president.

From what I’ve read, it seems as though JKF was totally cool with popping as many pills as he needed to in order to keep going. As The Atlantic details, “[He didn’t] believe that the many medications he took would reduce his ability to work effectively; on the contrary, he saw them as ensuring his competence to deal with the demands of the office.”

In other words, he was all for medication if it meant he would be able to endure a press conference.

And I’m also guessing he was the type of sick person who had access to any and all medications that he thought would help him. Something most of us can only dream of.

There was definitely a point in my life when I would have loved taking hundreds of Norco each month so that I could have kept pace with my previous lifestyle. I mean, I probably wouldn’t have a liver anymore, but at least I’d still have my own apartment.

Even on my current doses, my main reason for taking drugs is so that I can do as much as possible. Sometimes that means a work trip to Arizona, and other times it means having the strength to sit up on the couch and type out a column.

So I can completely understand why JFK felt like he did about the pills. But I don’t think most people would.

Heck, the number one comment I get from anyone who finds out how many drugs I take on the daily is, “You need to get off all those medications.” I usually explain that if I “got off all those medications” then I also wouldn’t be able to get off the couch. 

I also assume that when JFK said he was in pain, at least one of the like 23 specialists he was seeing believed him and responded accordingly. Again, something most of us can only dream of.

He also probably had no issues paying for his medications or getting to doctors’ appointments. And I’m sure he was able to see the very best doctors in the country whenever he wanted.

Even knowing that he had all sorts of advantages as a sick person though, there’s still a huge part of me that feels really inadequate thinking about how much JFK got done. I mean, I have literally had to scale back every aspect of my life since getting sick. I quit my side job as a youth leader, which I loved with all my heart. I moved in with my mom. I started working from home. And I even stopped going to the mall as much as I used to.

For me, a big part of being sick has been losing so many of the things I love, and then figuring out how to cope with those losses.

But then, there’s another part of me that thinks of JFK and is kind of inspired. Maybe there is hope for me yet. Maybe I can still live in Brazil one day, or become a best-selling author, or heck, run for office just like JFK did. 

I just need to find that German doctor and get some of those “pep pills.”

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

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

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

Dealing with Fatigue, Frustration and Fear

By Jennifer Martin, Columnist

Sometimes it just gets to be too much; the pain, the fatigue, the frustration and the fear. 

Wondering if things are ever going to get better. 

Wondering if there will ever be a day without pain.

I have always thought of myself as a stubborn and determined person.  When I was four years old I had to wear a cast on my right leg to help stabilize my arthritic ankle.  Even at four, I didn’t let that stop me from keeping up with my twin brother on the playground.

While I was in the middle of my j-pouch surgeries I was determined to finish my doctorate degree.  I finished my dissertation and two weeks after my second surgery, while in pain and out of it because of the pain meds, my mom drove me to L.A. so I could defend my dissertation and get that “doctor” title that I had worked so hard for.

Three months ago I hurt my right knee.  After two rounds of prednisone, physical therapy, rest (sort of) and X-rays, my rheumatologist still doesn’t know what’s wrong and I still have pain every day.  Since the injury, and against the wishes of my husband to stay home and rest, I have continued to go to the gym so I can at least get a kick ass arm workout. 

Why have I done all of these things?  Because I’m stubborn.  And I’m determined.  I try my hardest not to let the pain stop me from doing the things I want to do.  I try to be as normal as possible, because I hate feeling like I can’t do something and I hate for others to think that I am weak, even though I know that I am not.  I also try to take advantage of each day as much as I can because I never know when or if I will be in the hospital again, when or if I will have to have another surgery, or if my arthritis will get worse.

But sometimes it just gets to be too much.  Dealing with pain every day is tiring!  And dealing with the fatigue that comes along with the pain is tiring!  In addition to that, the frustration and fear that things will never get better and that they could possibly get worse can be incredibly overwhelming.

So here is what I do when things get to be too much.  I hope some of these tips will help those of you reading this:

• I take a little time for myself, even if it’s just five minutes.  If I am at work, my favorite thing to do is close my office door, open YouTube on my computer and put on some yoga music.  Then I sit back, close my eyes and take deep breaths.  This does amazing things for my mind and my body.
• I try to remember what is good and positive in my life: my son, my husband, my family, my friends.  While I still have pain, there is still so much I can do.  It helps to focus on what I can do instead of what I can’t do.
• Get outside.  I love the beach.  It does something for me that no other place can.  But I can’t always get there, especially with family and work demands.  If I can, that’s my preference, but if I can’t, even just sitting in my backyard can do the trick.  Fresh air and vitamin D are proven mood elevators.
• I write.  Writing about the pain, the frustration and the fears can be very therapeutic.  Have you ever wanted to vent so badly about the way you are feeling but don’t want to bother anyone with it?  Writing down exactly what you would say to someone else is a great alternative.
• I focus on a goal and plan on how I am going to reach it.  This helps me to focus on something other than my pain and fears.  It can be a big goal (passing my final licensing exam) or a small one  (doing as much as I can this weekend with my son despite my knee pain).
• Sometimes I just have to take a rest and realize that it is okay.  This is really hard for me to do but sometimes it is necessary.  Those of us with chronic pain can’t be expected to do everything and we can’t expect ourselves to do everything. 

Balance in life is key and part of that is taking care of ourselves and letting go of the guilt that comes along with it.

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness. 

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases, as well as other types of chronic pain.

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

Media Coverage of Pain Meds Often Unfair

By Emily Ullrich, Guest Columnist

As a chronic pain patient, I see a number of damaging political and social obstacles being added to the already desperate, often isolated and depressed lives of chronic pain patients.

Those of us who live with constant pain are too often disregarded by friends and family, who become frustrated that we haven’t gotten better, and/or begin to suspect that we are feigning or exaggerating our illness. In addition, doctors often label chronic pain patients as “drug seekers” and “malingerers.” Patients who need their help the most are often thrown by the wayside.

On top of these devastating blows, chronic pain patients face political, medical, social, and media scrutiny, and are often shamed out of seeking or pressing for the help they so desperately need. Some glaring mistakes are being reported in the media about drug use, overdose, and abuse. These mistakes are being repeated on a national level, and have created a culture of misinformation and stigma.

There is no doubt that addiction and overdose are serious issues which deserve our attention, but the media is manipulating the minds of consumers about the origin and nature of these issues, beginning with the subtle engineering and general processing of words. By that I mean the simple diction and placement of words used in articles regarding pain medication and illegal drugs.

For example, while an article discussing diabetes or blood pressure medication will refer to them as “medicine,” an article about pain medications will often refer to them as “drugs.” That places a negative connotation on the reader's perception of ALL pain medications as being categorically the same as street drugs.

I also read articles on a daily basis which pair pain medications and illegal drugs together in broad general statements, implying that the two are synonymous. In addition, the terms and implications about the use and abuse of pain medications are being used interchangeably; again reiterating in the minds of readers that if one takes pain medications, he or she is an addict, and that by simply taking pain medications he or she is abusing them.

These implications are untrue, unfair, and misrepresent chronic pain patients, misinform the public, and create unnecessary fear and sensationalism.

Like thousands of other chronically ill, legitimate pain patients in Kentucky and throughout the United States, I have been taking pain medication for many years. Without it, I cannot get out of bed and function. I have never once been "high" on them, and I've NEVER considered heroin use.

The real correlation between the two is that pain patients are being forced to fend for themselves and find relief on the streets with drugs like heroin. The government has scared doctors out of doing their jobs when it comes to addressing pain, and because of the media's continued manipulation and sensationalism in regard to pain medication, society now shames pain patients out of seeking medications they need.

There is an essential truth being conveniently omitted from most current articles regarding pain medication, street drugs and overdose, and that is that there is a direct correlation to the increase in heroin use and the implementation of growing numbers of laws that restrict prescription pain medications.

People are suffering, but instead of being treated with compassion, they are being treated like criminals and worthless members of society. Legitimate pain patients deserve access to the medications which allow them to operate, and doctors should not be afraid to help them. Patients should also not be made to feel they are illicit members of society for seeking a remedy to their medical conditions.

It is time that the media clearly differentiate between addicts who abuse pain medication and legitimate pain patients who use their medications as directed. Also, lines between pain medication use and the use of street drugs must be drawn.

Most importantly, politicians across the country must accept their role in the influx of heroin usage, and its direct correlation to the “War on Drugs.” Laws that limit the availability of pain medication are not based on truth (according to the U.S. National Library of Medicine, the real rate of addiction among chronic pain patients is a mere 3.27%), but are adjusted to fit the motives of politicians and scare the public.

Lastly, as chronic pain patients we must ensure that our voices are heard. We must educate and inform others and, most of all, demand our human right to adequate pain control.

Emily Ullrich suffers from CRPS/RSD, Sphincter of Oddi Dysfunction/Papillary stenosis, carpal tunnel syndrome, endometriosis, chronic gastritis, Interstitial Cystitis, uterine fibroid tumors, migraines, fibromyalgia, osteoarthritis, Periodic Limb Movement Disorder (PLMD), Restless Leg Syndrome (RLS), Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and IBS.

Emily is a writer, artist, filmmaker, activist, and has even been an occasional stand-up comedian. She now focuses mainly on pain patient advocacy as a delegate for Power of Pain Foundation, as she is able.

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.

Power of Pain: Tools for Today and Tomorrow

By Barby Ingle, Columnist

Taking each challenge one step at a time can help you gain perspective on your future. There are multiple aspects to pain management to be considered, such as physical and mental health, trends in the healthcare industry, and personal injury liability. Learning about them and putting life into perspective can help us deal with behavioral changes, social isolation and spiritual concerns. 

Understanding that pain causes depression, not the other way around, can be a good place to start. Realize that you have control over your actions, and feeling bad is not a proper excuse for treating others poorly. Doing so can lead to social isolation.

You may not feel like having others around or it may make you self-conscious about losing the ability to do simple activities with them. But creating a support network and staying socially involved can increase your quality of life as a chronic pain patient, as well as increase the human connection that we all need.

Once again, I need to emphasize proper communication for better treatment, attitude, and comfort. Working with your social network, finding out about future trends, and what your doctor has learned can help you keep the pain perspective.

Have hope that a cure will develop. If a new procedure becomes available, you will be prepared and have the support of those around you. When you hear of positive news like a new treatment, ask your doctor about it and if they are willing to give it a try. Find out if it is just another gimmick or if there is real science behind it. Be sure to do your own research and be comfortable with your choices. 

With chronic pain diseases, you have to be your own advocate and motivate others to advocate for you. If you were injured through someone else’s negligence, find out the legal consequences and if any action can be taken. Speak with a personal injury attorney to find out if you have a case. If you do, he can instruct you on how to arrange payments for medical treatments and how the lawyer will be paid. Question if the defendant is responsible for your bills now or if you have to find a way to cover your medical bills and be paid back when and if you win your case.

It is also important to know what happens if you don’t win your case. Ask if you will have to pay charges your lawyer paid to prepare the case or if you have to pay liens. Liens are holds or rights to property or monetary gain on property. Many doctors’ offices will put liens on your case. This means that they get paid before you receive any awards.

Becoming prepared for these new life changes will keep the perspective to your new life on a positive track. Use your community resources such as food banks, church support groups, and non-profits to get the help you need. Help is there, you just have to be willing to take it and put in as much as you can to keep your life on track.

Because chronic pain and bad health in general weakens the immune system, your ability to heal and fight diseases is also compromised. I often can catch someone's cold by being near them through physical contact, such as hugs or sharing candy out of the same dish with a child who has dirty hands.

Often as a pain patient I do not want others to touch me, both for my health and because -- unless they really know me -- they don’t know where it hurts. So I usually ask people not to touch me without asking.

Be prepared to face the pain and have a plan.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of 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.

Success Stories of Real Medical Marijuana Patients

By Ellen Lenox Smith, Columnist

My husband and I have been licensed medical marijuana caregivers in the state of Rhode Island for over five years. Our lives have been touched by the many people who have been sent our way by doctors for education about medical marijuana. Some of the people below are either our present or past patients, along with some from other states we met and have kept in touch with.

We hope their stories will help you gain the courage to give this safe, non-invasive pain medication a try.

Bob - Paraplegic

Bob arrived at our house in his handicap equipped van and we met him in the driveway. It was difficult to understand Bob’s speech at first due to his intense level of pain. He seemed overwhelmed and lost.

The doctor who saved Bob’s life when he fell off a roof and was impaled and paralyzed, warned him when he awoke from surgery that he would experience intense pain for the rest of his life.  

However, things changed when Bob tried medical marijuana. He vaporized marijuana right there in the driveway, proceeded to tell us that he felt no change, and before he knew it was having a conversation with us. At times, the effects of marijuana are so gentle you don’t realize what is changing.

Bob became an advocate for medical marijuana and almost daily would call on the phone to make sure we were doing okay. He became a gentleman that was able to share, care and feel again.

Bob has since passed and is missed, but we know that his dignity was restored by cannabis relieving his pain. Vaporizing medical marijuana allowed Bob to have a peaceful ending.

image courtesy drug policy alliance

Scott -- Multiple Sclerosis

42-year old Scott, who has a severe case of multiple sclerosis, told me that turning to medical marijuana saved his life. The former customer service representative was thrilled when he found an alternative to using Avonex for his condition. He did not like using the drug because it caused flu like symptoms and a high fever.

By smoking cannabis, Scott is able to control his pain and is thrilled how he is able to move his stiff legs. He also says it relieves his neuropathic pain too.

School Teacher - Ehlers Danlos Syndrome

An elementary school teacher, who asked that we not use her name, was diagnosed with Ehlers Danlos Syndrome (EDS). She was not sleeping and had a terrible time functioning in her job. Then she decided to try medical marijuana. She began taking an indica oil at night before going to bed and a sativa tincture during the day after work. Just 10 minutes after each dose, her pain levels are diminished or completely relieved.  

She finds the night time dose carries into the following day, but doesn't hinder her either mentally or physically.  It allows her to function and be the teacher she was before --- vibrant and focused.

“Without this gift of oils, I would be in continuous pain 24 hours a day, 365 days out of the year,” she told me.  “This does not change who I am. It just changes how I am, functioning and living each day, which should be to its fullest.”

Lori - Spinal Injury

57-year old Lori had been employed as a medical coding technician at a local hospital. In 2007, she had an injury to her spine. Unfortunately, back surgery led to epidural fibrosis. After months of failed alternative treatments and medications, Lori's doctor suggested she try medical marijuana.

She found immense relief using a portable vaporizer (PAX) two to three times a day. Lori no longer has to rely on narcotics for pain relief and her entire lifestyle has changed.

“I have at least half of my life back,” she says. “I am not severely depressed, I get out alone more often, and the pain is there but not ruling my life!”

Stryder - Ehlers-Danlos Syndrome and Epilepsy

We met 5-year old Stryder at an EDS conference in 2013. A pain clinic doctor got in touch with us after meeting with his mother, Angela.

Our hearts broke to see a gorgeous young man crippled from the joys of life by severe medical issues. Stryder barely noticed us and was not conversing. He was pale and exhausted.

We talked with Angela, gave her a donation of our night indica oil (not made from any high CBD plants) and carefully gave directions on how to use it.

They were sharing a room with a woman, and Angela told us Stryder had driven the woman crazy with the seizures he had during the night. But, after the second night of trying the oil, she asked Angela in the morning what she had done differently. When she told her the truth, the woman was amazed with the changes.

Stryder was a different boy. He was talking and interacting like he hadn’t before. Angela believes this was caused by a combination of sleep and brain rest from the seizures. Stryder was alert, smiling, walking, and even went off to play with other children at the conference.

Today, Angela says Stryder is a legal marijuana patient in his state, takes his oil based medication in a dropper and sometime uses cannabis candy to suck on. He is sleeping better at night and is happier.

Angela advocates for medical marijuana to help others get educated with correct facts. When someone said they were against putting cannabis in candy, here is how she responded:

“Would you rather a child smoke it? The drugs that these kids are put on for seizures are devastating, have a lot of side effects and are addicting,” Angela said. “Children are often told to just suck it up when it comes to pain management and that's just not fair. Stryder's success has been unmatched and I will always be an advocate for something that is natural and less harmful as well as effective.”

Maureen - Postural Orthostatic Tachycardia Syndrome (POTS)

The day Maureen arrived to our house, we wondered how she even made it driving to us. Her POTS (a syndrome that causes an abnormally high blood pressure and heart rate) was so severe, she was shaky and extremely pale. Her cardiologist had wanted her try marijuana since he had observed other POTS patients get relief from it.

Maureen’s POTS was diagnosed at age 54, where she was working as an ER technician.  She chose to use the oil and the tincture as needed, until she was put into an experimental cardiac rehab program and began getting saline infusions.  After several months, she found that this helped to keep her blood pressure at a normal level and made her symptoms less severe.

“When you're sick every day for a long period of time, anything that helps is worth it; not just for the physical symptoms but for your mental state as well,” Maureen told me.  

Today, at age 57, she no longer has to use marijuana at all. She keeps her symptoms under control with exercise and saline infusions. However, if the need arrives again, Maureen says she wouldn’t hesitate to use marijuana again.   

Bonnie - Pudendal Neuralgia and Post-Fusion Pain

At 75, retired college professor Bonnie arrived at our home in severe pain. After much education and consideration, she decided to give medical marijuana a try.

In time, as she gained her confidence, Bonnie found that eating brownies with marijuana, along with taking indica oil at night, provided her relief from unrelenting pain.  It also provided some hope, thus improving her outlook on life.

"The only real relief I have had from my pain has been with medical marijuana.  My medicine allows me to enjoy life again," Bonnie says.

Elizabeth - Chronic Regional Pain Syndrome, EDS and Chiari Malformation

29-year old Elizabeth was sent to us by a pain clinic doctor. This beautiful, terribly thin, and discouraged young lady and her mother arrived at our home and it broke our heart. Elizabeth’s CRSP was so severe on her head that she was no longer able to touch it, let alone consider running a comb or brush through her hair.

Elizabeth was a former piano teacher and a recording artist, struggling to hold onto her career.  She clearly wanted to get back control of her life. While in our home, she started to rub our topical on her scalp and we were startled when she said she felt some immediate relief. So began her magical way to help get some quality of her life back.

Elizabeth now administers her medical marijuana in a variety of ways. She eats it with edibles, drinks it, massages her joints with it, vaporizes it, and occasionally smokes it.  She enjoys using a Magical Butter machine that it makes potent tinctures and oils, and appreciates the "no heat" option, which she uses to make CannaMilk.  

Elizabeth found she requires high doses of THC, because she doesn’t absorb it at a normal rate.  As a slow absorber, she doesn't get a big peak in relief, followed by a sharp drop-off. Instead it gives her a pretty consistent relief and doesn’t make her feel “stoned."

drug policy alliance

With medical marijuana, she feels her muscles are not as rigid. She can relax, sleep better, and can touch areas of her skin that used to be too sensitive to touch.

“It has changed my life for the better,” Elizabeth says.

Melvin - Renal Failure, Degenerative Lumbar Disc, PTSD, Headaches

43-year old Melvin is employed as an agricultural-inspector. We met this very intelligent, kind man at our home a few years ago and hoped that using medical marijuana would provide the relief he needed to be able to function better in life.

Melvin did a lot of research about how to use marijuana, what strains to consider, and in time found the best way for him to administer it was with vaporizing and using extracts.

He found that his PTSD was mostly relieved by using the higher CBD strains. Melvin’s PTSD causes unwanted and uncontrollable visions and thoughts. Marijuana slows them down, without triggering emotional responses. Its’ not a cure for his PTSD, but has made it more manageable.

There are two damaged discs causing nerve pain which radiate down Melvin’s legs – making them feel numb, burning and painful. He alleviates this pain using marijuana strains like Bubble Gum, Lucy and Pineapple Express. Without them, Melvin says his back would be in constant pain and he would have to lie in bed for most of the day. With marijuana, he is a functioning employed worker.

“With a huge help from my caregiver I was able to find the correct THC to CBD ratio that works for my PTSD and disc/nerve degeneration. Medical marijuana is my freedom!” Melvin says.

Bill - Cardiac Issues

We met Bill and his wife, Joan, a few years ago. Despite his failing health, the love and commitment between them was so clear. We hoped that medical marijuana would provide the relief needed to allow Bill dignity with the time left in his life.

A former firefighter for 30 years, Bill was diagnosed with just 20% cardiac output. This caused him severe pain while breathing.

Bill found that administering the marijuana in an oil night and using the tincture during the day gave him relief. He was able to sleep again for more than one or two hours. For the severe pain in the center of his ribcage, due to an unhealed fracture, the topical cream gave Bill relief that lasted for hours.

Bill used this form of medication for about a year and wished he had been able to use it even sooner, so that he could have had a better quality of life.  

Sadly, Bill recently passed away at the age of 73.

drug policy alliance

Diana - Ehlers-Danlos Syndrome

53-year old Diana was a national award-winning composer, pianist, singer, violinist, dancer, and actress. She had to turn down a Master's fellowship because of her recurrent back, shoulder, and elbow/wrist pain.  Instead, she worked as lab technician.

Cortisone shots and bed rest were the "treatment" for her pain. For five long years, she wore hard braces from her wrists to her elbows, yet also managed to perform lead roles in musicals (with braces hidden beneath costumes).  

After she was finally diagnosed with EDS, she turned to medical marijuana two years ago. Now, every night, Diana uses an indica oil. Without it, she would sweat throughout the night profusely.  Medical marijuana has also reduced her pain from EDS.

Sally - Stage IV Cancer

Courageous 71-year old Sally has been successfully using medical marijuana for over five years. She began using it after being diagnosed with Stage IV uterine cancer.

Sally has defied all odds by remaining active and engaged in life. She found that using the oil at night gave her much needed quality sleep and lowered her pain. For daytime relief, she found vaporizing controlled her nausea.

“Marijuana has few, if no side effects. It is benign in terms of overall functioning,” she says.

Sally, who was recently told by her doctors that she doesn’t have much time left.

Sally, who was recently told by her doctors that she doesn’t have much time left, is a role model to us all; determined, positive and caring. She touches lives in a positive way and will always be in the hearts of those that have had the honor to know her.

These are just a few of the amazing success stories that I have experienced with patients using medical marijuana. Most people that try marijuana are able to find relief from the different conditions they are striving to live a better life with. 

We look forward to the future when more research is allowed in our country.  This, in turn, would provide the needed support and education for those in the medical field, so they could understand and encourage their patients to try marijuana. Not as a last resort, but as the first choice.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis.

Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical marijuana, visit their website. 

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

Medical marijuana is legal in 23 U.S. states and the District of Columbia, but is still technically illegal under federal law. Even in states where it is legal, doctors may frown upon marijuana and drop patients from their practice for using it.

AMA Needs to Get Facts Right About Opioids

By Pat Anson, Editor

This week the American Medical Association launched a new effort to combat prescription drug abuse in the U.S. The AMA is working with over two dozen state and national medical organizations to address what it calls the “opioid public health epidemic.”

While the effort and its goals are laudable, it was disappointing to see the AMA – the nation’s largest medical group -- announce them in a news release full of cliches and half-truths. 

The news release began with this:

“With 44 people dying each day in the United States from an overdose of opioids, we physicians see people affected by this epidemic on a regular basis.”

The “44 people dying each day” figure comes from a CDC study of prescription drug overdoses, which found that in 2010 “opioid analgesics were involved in 16,651 deaths – far exceeding deaths from any other drug or drug class, licit or illicit.”

The CDC study is cited in virtually every press release, news conference and news story that relates to the issue of prescription drug abuse. Over 16,000 people dying from any cause is a serious problem and an attention getter. At face value, the numbers are frightening.

If only they were true.

As longtime patient advocate Janice Reynolds pointed out in a recent column for Pain News Network, the CDC’s numbers are seriously flawed.

“Unfortunately this study is quoted by many.  If you say a tale often enough, it becomes a version of the truth,” Janice wrote. “The CDC study is based on a review of death certificates and didn’t sort out legitimate opioid prescriptions, illegal use of opioids, suicide, deaths caused by alcohol or other medications, or even if the death was truly from opioids and not from some other disease process.

“Did the patient die from lung cancer or opioid toxicity?  Sometimes the latter is entered as the cause of death when it is not the case.”

A close reading of the CDC study also turns up something else. Other medications, particularly anti-depressants, sedatives, anti-anxiety and other mental health drugs, often were involved in the overdoses -- not just opioids.

To quote from the study:  

“Opioids were frequently implicated in overdose deaths involving other pharmaceuticals. They were involved in the majority of deaths involving benzodiazepines (77.2%), anti-epileptic and anti-parkinsonism drugs (65.5%), anti-psychotic and neuroleptic drugs (58%), anti-depressants (57.6%), other analgesics, anti-pyretics, and anti-rheumatics (56.5%), and other psychotropic drugs (54.2%).

Why do we never hear about an “epidemic” of deaths from anti-depressants or sedatives? Because in all of the deaths involving multiple drugs, only opioids are singled out as the cause of death.

The CDC’s research is obviously flawed, yet --- like a bad zombie movie -- this five year old data has taken on a life of its own.

The Washington Post repeated the opioids “killed more than 16,000 people” mantra a few weeks ago. So did Drugwatch.com, The New York Times, Los Angeles Times and Forbes.   

What about the 44 people dying every day? That zombie factoid was easy to find online in Deadline Detroit, the Magnolia Reporter and the Livingston Daily.

Like Janice Reynolds says, “If you say a tale often enough, it becomes a version of the truth.”

The tale would go away rather quickly if the CDC and other government organizations stopped repeating it or simply conducted a new overdose study with a better methodology. But the CDC seems more interested in keeping the zombie story alive.

Dr. Lynn Webster, a prominent pain physician, pointed out in a column last week that the CDC continues to use “fuzzy reporting” about opioids – raising questions about the agency’s impartiality.

“Given the concerns with accuracy of scientific reporting, is it reasonable to increase federal funding to the CDC to battle prescription opioid abuse, as requested? Only with an understanding of the real reasons for the current opioid problem can we solve the problem. Perhaps more dollars should instead go to the National Institutes of Health, which is in desperate need of more funding for pain research and to develop safer alternatives to opioids,” Webster wrote.

Opioid abuse, overdoses and overprescribing are serious problems. So is underprescribing and making opioids unavailable to people who truly need them.

How far has opioid hysteria gone? In a recent survey of pharmacists and drug wholesalers by the General Accounting Office (GAO), over half said DEA enforcement actions had limited their ability to supply drugs to legitimate patients.  Many said they were fearful of being fined or having their licenses revoked. You won't see that story being reported in The New York Times or Los Angeles Times because the CDC and DEA aren't churning out press releases about it.

As Dr. Webster points out, if we’re truly going to address these complex problems, we better get our facts straight.

So should the American Medical Association.

A Pained Life: When There is No Cure

By Carol Levy, Columnist

There tends to be a misunderstanding in the minds of many, including doctors, that people who take opioids for their chronic pain believe it will “cure" their pain.

The idea behind a narcotic is the dulling of pain, or if you're lucky, stopping it in its tracks. It is not designed to “cure” anything.

Patients with kidney stones, as an example, are often given morphine, not because it will dissolve the stone, but because it will help reduce the pain.

When there is no cure, when the ultimate biological mechanism behind the pain is unknown, and when the patient is in pain, what is a doctor to do? What is a patient to do?

To me the answer is simple. They work together to find a drug(s) that will help relieve the pain. Often that means an opioid..

Trigeminal neuralgia (TN) is a good example.

Although theories abound as to the cause of TN, even the most long lived school of thought; that a blood vessel is pressing against the nerve, is not accepted by many in the neurosurgical community.

Some patients are helped by surgery, but a large portion do not and get little or no relief. In addition, many develop phantom pain -- called Anesthesia Dolorosa -- which is truly awful and life destroying in its own way. Does that mean a doctor should offer nothing to try and help? Or is this the time to offer an opioid?

Sometimes my Anesthesia Dolorosa pain is helped when I take my prescribed narcotic (codeine). On a really good day, which is very rare, it even helps my eye movement and usage pain.

Is it enough to make me "able"? No. The pain is still there.

Then how can I say it is helping?

It encases me in a layer of numbness, the pain somewhat outside of me.

Do I enjoy it? (A question asked by way too many) Absolutely not. The codeine swathes me in a net of sticky cotton, a sensation of suffocation and a loss of boundary. But the pain is farther away from me and I can breathe.

We have chronic pain. We know, for most of us, there is no cure.

But too many are trying to take away the one thing that helps some of us get freedom from the pain, even if only a fingertip full.

Please, those who say since there is no cure in a narcotic they should not be given; please, please understand. Even a soupcon of relief is acceptable when that is all there is.

And often, all there is is a narcotic.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

When Your Friends Disappear

By Pat Akerberg, Columnist

Has this happened to you?

You get a medical diagnosis that is upsetting and life altering.  Soon it becomes clear that you won’t likely return to your previous life or be your old self again.

Now, more than ever, you look to your closest friends or family to stand by you and catch you before you fall and break, like Humpty Dumpty.   

But like a “trust-fall” exercise gone wrong – right when you need their safety net the most – they aren’t there!  And you fall hard.

Painful, isn’t it?  The pain of betrayal cuts through you like a knife.  It’s a blindsiding blow that you never saw coming.

Since my chronic illness struck, I have been very hurt by the unpredictable disappearance of a number of friendships along the way that I truly thought were solid.

Initially, I reacted the way most who are rejected and took it personally, adding insult to my injury. 

There were also elusive questions, plagued with doubt and recrimination: 

Is it my fault somehow?

Was it something I did or said, or didn’t do or say?

How did I not see this coming?   

These trap questions never have any real answers and just kept me spinning in an unresolved circular loop.

That began to shift when I learned that these undeserved desertions were happening to my trigeminal neuralgia friends too.

We realized that many times the ones who left were the very people we believed we could count on the most.  Some of the neediest ones were also the first to flee.

I reasoned it was about some deficiency in them – a lack of compassion, willingness to be uncomfortable, depth of character, or sincere caring.

I once read that “expectations are resentments waiting to happen.”  Deep down, yes, I had unconsciously assumed they would “be there” for me too.

Instead they purposely made a choice to not be there (a choice I didn’t have).  And when they weren’t, those unmet expectations became a source of my resentment. 

Maybe they excused themselves by rationalizing that they are “too busy”?

Or, maybe for some, it’s because they are still able to hold onto the illusion that they maintain a level of control – something I had clearly lost.  No cold, hard reality had come along to shatter that for them yet.

Who really knows why they chose to leave?

Eventually my questions about them gave way to more pertinent ruminations about friendships. I wondered if it’s realistic to think we can really know or count on the staying power of our friends until we encounter and work through adversity together.   

Things that we believe are shared between us – unique connection, loyalty, understanding, tolerance, mutuality, honesty, trust, humor, etc. – are much easier when they aren’t put to any serious test.

Even a union like marriage filled with vows attesting to honor that sacred relationship may not always last through the toughest of times.

Since there are no friendship vows, I’ve had to get clear about my boundaries and the friendship qualities that matter the most.  

At my lowest point, a long term “friend” judged my condition as “karma” and actually told me, “Everyone is going to die; you’re ‘just’ going to do it sooner.”

The karma notion blames the person and the word “just” implies “no big deal.” 

We were talking about my life!    

The cruelty of her words formed a boundary against that kind of harmful friendship.

Learning Self Care

Once I got past the sting of some friendships fading into obscurity and those that needed to, I began to explore some of those friendships and myself.  I hadn’t really assessed what was or wasn’t there.   

I took relationships seriously and was quite prone to meeting others needs.  Focusing on helping them often trumped my inner voice that warned of my limits, nudged me to ask for what I needed too, and let me know when that was missing.

Unwittingly, I had lost touch with my own self care.

Like many of you, pain limits my energy, capacities, and resources; and Self Care 101 means spending them wisely. 

Holding on trying to make inadequate friendships work takes too much energy. As my illness progresses and my needs shift, I’ve had to learn to loosen my hold and let go of so much that was or might have been.  That applies to some friends too.

It’s easier and wiser to see those departures as a welcome favor now.

That’s okay, because the friends that are left fit better.  The loss makes way for something better to show up.   

Free from dwelling on having been unfriended, I can focus instead on ways to best befriend myself these days. I am also free to fully feel my gratitude for those who are present (vs. missing).

The good news is that so often when disappointments and adversity strike, and while some friends and family run from the problem post-haste, there are also others who show up unexpectedly, and in more authentic ways.

Seemingly out of nowhere, their entrance shifts the whole equation from an exercise in subtraction to one of addition.

And thankfully, there are those bonafide friends who have been there for us all along.  Like my spouse/partner, they are a healing balm that can renew my weary spirit.   

These wonderful souls in our lives show us that there are still many compassionate people out there who truly understand how to care. Finding ways to be there for them too is energy well spent.

Friendships lost are an experience that I didn’t ask for and didn’t want, yet it woke me up to myself again.  It has urged me to treat myself like my own best friend -- a win-win worth cultivating.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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

Pain Patients Should Come First

By Janice Reynolds, Guest Columnist

In the media, the persistent pain patient should always come first -- before the stories of addiction, overdoses and the inferences of poorly done studies linking the two with pain treatment. 

Most important is the professional relationship between provider and pain patient.  There needs to be therapeutic discussion between the two as to the nature of the pain, how it affects the person’s life, as well as what’s been tried and worked, and what has not worked. The goal should be a multimodal pain plan which works for the patient as well as being affordable.

The risk of addiction should be a concern, but not at the forefront.  Those seeing addiction as an “epidemic” linked with pain management have no valid research on which to base their concerns, only the media and addiction specialist hysteria. 

Unfortunately, many professionals as well as the general public are not only influenced by the media but learn from it as well. The yellow press of today is comprised of articles full of lies, half-truths, and prejudice.  This behavior is seen in professional articles as well.  Many times the basis for an article is some piece of research which is interpreted by the authors to conform to their point of view.

Not all research gives us proof or even a good indication of the truth.  Some studies are flawed and others are inherently bad.  An example of this is the CDC’s opioid overdose study, which is often cited to make the claim that over 16,000 American die every year from opioid overdoses. 

The CDC study is based on a review of death certificates and didn’t sort out legitimate opioid prescriptions, illegal use of opioids, suicide, deaths caused by alcohol or other medications, or even if the death was truly from opioids and not from some other disease process. Did the patient die from lung cancer or opioid toxicity?  Sometimes the latter is entered as the cause of death when it is not the case.  

Unfortunately this study is quoted by many.  If you say a tale often enough, it becomes a version of the truth.

Many times reporters get their information from questionable sources.  Their experts are frequently addiction doctors and occasionally others who are experts in their own minds.  Someone who is expert in pain management is seldom interviewed or quoted and when they are, their message is greatly outweighed by the others or taken out of context.  Selectively presenting “expert” testimony is at best a half truth. 

Reporters need to learn how to read and understand studies, especially if they are going to quote them. In order to know how valid a study is, the size, method, and strength of evidence all needs to be evaluated as well as any weaknesses.  Is this ever done by the media?

There are many fictions. Sometimes pharmaceutical companies are charged with trying to increase their sales by marketing pain medication.  One article said the Institute of Medicine’s report on chronic pain was influenced by the pharmaceutical companies. Another article claimed “our pain was greatly exaggerated” and severe pain really not that common. An article even stated hydromorphone was a long acting form of morphine, an outright untruth but never corrected. There are way too many fabrications to repeat.

One of the biggest challenges for people with persistent pain is the linking of addiction with treatment for pain. Not only the media does it, but even medical organizations geared towards pain such as PainWeek do it.  Yet a Cochrane Review on the available research shows only 4 to 5 percent of people taking opioids for pain become addicted, much less than the 17% in the general population who have addictive personalities. 

I realize there is an irrational fear of addiction (e.g. as a nurse, it was not unusual to have family members of a dying patient worried the patient would become addicted!), but the media should be educating more about pain, pain management, and the true reality of addiction rather than the dangers of addiction and the so-called “epidemic.”

In 1968 Margo McCaffery wrote, “Pain is what the person says it is, existing when he says it does.”  She was heavily ridiculed at the time.  Where Margo once said she would rather be fooled by ten people than let even one person suffer with pain, so many now would rather have 1,000 people suffer with pain than let one person fool them. 

In so many places now, the quality of pain care is measured by the number of prescriptions for opioids written (less is better). Compassion is a forgotten term. I heard a physician recently say only patients dying with cancer should be allowed opioids.

We need to see more accountability by providers and the media for understanding pain, learning about persistent pain syndromes, and about interventions both pharmaceutical and non-pharmaceutical.  There has to be education that not all interventions work the same for everyone; some work better, others may not work at all.

They need to learn if an intervention is affordable or doable. Some medications and many non-pharmacological interventions are not covered by insurance or covered minimally (6 physical therapy treatments a year won’t cut it), making effective therapies too expensive to pay out of pocket. 

Providers continue to get minimal education on persistent pain and treatment options in school.  But when it comes to continuing education they are required to get education on Risk Evaluation and Mitigation Strategies (REMS) for opioids, as well as identifying the addict, yet little about pain treatment.  This lack of edification hinders providers’ ability to care for patients and makes the provider more susceptible to the myths related to addiction.

Providers and the media need to realize the person with persistent pain “owns” their pain. They alone know what it is like, how severe it is, what it prevents them from doing, and most importantly, what works for them and what doesn’t. 

Ethics demand that persistent pain be treated. It is a human right.

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

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

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