January 28, 2016

My Life as a Teen with Chronic Pain

January 28, 2016/ Pat Anson

By Stacy Depew Ellis, Guest Columnist

School, sports, music, catching up on the latest gossip. That is what I wish I could say my teenage years were filled with.

Don’t get me wrong, I had a great life. However, I was more concerned with being at school, when my last dose of medicine was, and how I was going to get up the stairs.

When I was in eighth grade, I had a traumatic accident in my dance class. After being misdiagnosed and put in a cast for almost three months, I was diagnosed with a chronic pain syndrome called Reflex Sympathetic Disorder (RSD) or CRPS.

I was sent to yet another doctor to see about treatment. It was decided that I would continue taking pain medication and start receiving lumbar injections. Little did I know that sleepless nights and several emergency room trips would also be included. I would be given more than the recommended amount of painkillers and would still be screaming in pain. Every trip back there offered more questions about a teenager being addicted to prescription drugs. Every doctor in town had seen me.

I started high school as a homebound student. I was going to school for my elective classes and seeing a teacher at my house for core classes. A lot of kids my age got hurt, most of them had a cast at some point. But my illness wasn’t visible; you couldn’t see anything wrong with me. I began losing friends and rumors spread like wildfire throughout my community and school. The worse my pain was, the worse the rumors were. It was tough, but I got through school.

After my 33rd spinal injection, I put a stop to the poking and prodding. The doctor hit a nerve and I was paralyzed from my shoulder to my finger tips for two days. Forty-eight hours of not moving an arm. Even more doctors came to see me and I started what would become the first of many steroid treatments.

Time went by and nothing got better. I had headaches, achiness, and started having trouble putting my thoughts into sentences. I saw a neurologist who once again started a smorgasbord of tests. Using my body as a human cushion was normal. What seemed like years of MRIs, spinal taps, and some things I have never heard of, led to the diagnosis of multiple sclerosis.

MS? Really? I was 21 years old. My first round of treatment was a huge dose of steroids. I took 150 Prednisone pills followed by three days of IV steroids. My flare ups were bad, leaving me in the hospital for weeks at a time. I was a guinea pig for these pharmaceutical companies, injecting myself with a different medicine every month to see which worked best.

It was relieving to finally have a diagnosis and know what was wrong, but having MS is almost worse than not knowing. Heaven forbid I get sick and need to see a doctor. No one wants to treat someone with something like MS. Doctors immediately go to “it’s just the MS” and real problems get overlooked and never fixed. Honestly, the dentist even has trouble being your doctor.

I have been on medicine almost my whole life. I have been seen for depression and spent my paychecks on medical bills. There may never be a cure for multiple sclerosis and I may always be popping pills and injecting things into my stomach, but I am happy to say that I do my hardest to not let my disability hinder me. I try to not let it even be a part of me and I live my life to the fullest.

I will be on anti-anxiety medicine forever but I also believe that I can do anything that I desire. That is something that no doctor can ever take from me.

Stacy Depew Ellis lives in Alabama with her husband. Stacy proudly supports the Alabama-Mississippi National Multiple Sclerosis Society and the Ronald McDonald House Charity, which provided housing for Stacy and her mother when she was in a treatment program in Philadelphia.

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

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

January 27, 2016

Does Chronic Pain Define Us?

January 27, 2016/ Pat Anson

By Crystal Lindell, Columnist

The strangest part about having mental health issues is that it makes you wonder who you really are as a person — in your core.

Like if you’re feeling insanely anxious because of morphine withdrawal, does that make you an anxious person? Does that become part of who you are? Is that suddenly one of the many personality traits people will associate with your character?

Or, when you’re on morphine, and it changes you from a Type A person into a Type B person, is that who you are now? Is that your personality?

Or what about when you’re in so much pain that your patience is gone, and you realize that you are being a total bitch to everyone within striking distance. Does that make you a bitch? Is that who I am now?

I honestly don’t know who I am now.

I’ve been feeling especially unsteady lately as I try to navigate a new-found glimpse of health where I have actual pain-free days, and as I also simultaneously try to go off morphine completely. It turns out long-term morphine withdrawal is so much more emotional than anyone ever tells you.

And it turns out that I actually have no idea who I am as a person anymore.

I’m working with a psychologist and a psychiatrist, and I’m trying to figure everything out. But it’s almost like I spent the last three years of my life so completely consumed with my health issues, that I lost my identity.

Back when my parents got divorced, I remember being in a “kids from divorced families” support group about two years after everything first went down, and the woman leading the group asked me to tell everyone a little bit about myself. And I suddenly realized I didn’t know myself well enough to answer that question.

I remember lying and saying I was involved in things I used to be involved in, like theater. I realized in that moment that I had been walking through life with my head down, with my eyes on the ground for years, and I was trying to look up and see the world around me again. I’d been so consumed by my family’s issues that it literally hurt my eyes to look up.

These days, the setting is different but the realization has been the same. I’m on a date, or writing a Twitter bio, or talking to my therapist, and I suddenly find myself unable to answer basic questions, like “What are you interested in?” “What do you like to do for fun?” or “How would you describe yourself?”

And it hits me, that for the second time in my life, I have no idea who I am.

I know what I’m not. I’m not a youth leader anymore. I’m not Type A anymore. I’m not independent anymore. I’m not even drug free, or a practicing Christian, or living in my own place.

But if I’m not any of those things, who am I?

They say that going through hard times makes you realize who you really are as a person. If that’s true, it turns out that this whole time I was an atheist, Type B, bitch.

But I’d like to believe something else. I’d like to think that hard times are like a fire, a hurricane and maybe a bomb -- all at once — and they just destroy everything in their path. Picking up the pieces means finding lots of damaged things. It means that for a while, everything is burned, and blown up and underwater. And that’s okay. It’s okay to be damaged.

The important thing is figuring out how rebuild, and creating something new from the wreckage. It’s about figuring out what I want my soul to look like now that it’s endured an explosion. I’m not sure yet who I will be when everything gets redone — I’m not sure who I want to be.

When 2016 started, I posted a quote on my Instagram, “What is coming is better than what has gone.”

And I have to believe that whatever I choose to rebuild, it will be better than what the pain destroyed.

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.”

January 26, 2016

#PatientsNotAddicts Campaign Launched on Twitter

January 26, 2016/ Pat Anson

By Ken McKim, Guest Columnist

There’s a hashtag coming to a screen near you: #PatientsNotAddicts. Its importance to the millions of people who suffer from chronic illness cannot be overstated.

Words matter. Words are powerful. They can educate, but they can also blind. They can sway the opinions of millions of otherwise thoughtful and intelligent people through nothing more than simple repetition, even if the information they repeat is patently false.

In a 1992 study by McMaster University researchers, it was shown that people give more weight to something they hear repeated over and over again, than something they have only heard once. People will do this even if the person repeating the information has proven untrustworthy in the past on multiple occasions. Repeat it often enough, and a lie becomes the truth.

We see this all the time in life. It’s why advertising exists, and why politicians will never completely stop using negative campaign ads. Its how one discredited doctor was able to scare the daylights out of millions of Americans about the so-called dangers of vaccines, thus leading to a resurgence of diseases that had previously been all but eradicated, like measles and whooping cough.

This same tactic is now being used against medications that give relief to millions of people who are fighting cancer and chronic illness: opioid-based painkillers.

There’s no better way to ascertain public opinion on a subject than by Googling it. In this modern century of seemingly unlimited information, Google serves as society's mirror, reflecting back to us the truth of how we feel about any given subject. It’s not hyperbole to say that as Google goes so does the world, and this is especially true when it comes to the subject of opioids.

A recent search of Google using just the word “opioids” found that 50% of the search results had to do with addiction and abuse. Only 4% of the results dealt solely with the proper use of opioid pain medication.

It’s plain to see that media coverage on the subject of opioids skews overwhelmingly negative, and the average person researching the topic will come away with an equally negative (and unknowingly distorted) opinion of them.

It’s this negative societal view that the CDC was probably counting on to divert attention from their covert attempt to issue new prescribing guidelines to severely limit the prescribing of opioids. The webinar they held on the subject last September was an invitation only affair. No press releases were issued, and the period of time allotted for public comment was a paltry 48 hours (which was laughable considering most of the public had no idea this was taking place).

If not for the vocal pushback from the chronic illness community and organizations like the Washington Legal Foundation, these new guidelines would already be a fact of life for all United States citizens. Sadly, these guidelines are now the law of the land for our wounded veterans, as part of the $1.1 trillion spending bill passed and signed into law by President Obama last December.

Taking opioids for pain does not automatically turn you into an addict, any more than eating M&Ms turns you into chocolate.

Chronic illness may be invisible, but the chronically ill can no longer afford to be. That’s why #PatientsNotAddicts is important. Words are powerful and repetition can be a tool for the truth as well as for lies.

Using this hashtag can help remind everyone that pain patients are ordinary people. They are your loved ones, friends, neighbors and co-workers. What they want more than anything (except for a cure, of course) is to recapture just a small piece of the life they had before their illness took hold, before the never-ending pain of their condition destroyed the lives they had built for themselves -- lives that included careers, birthday parties, graduations, playing with their kids and being intimate with their spouses or significant others.

For hundreds of millions of people, opioids help them do just that. To deprive them of that small ray of hope in the name of “protecting them” is nothing short of inhumane. I believe we are better than that, America. Prove me right.

Ken McKim is an advocate for anyone with a chronic illness, and has made more than 43 videos on topics such as Crohn’s disease, lupus, depression, Ehlers-Danlos Syndrome, Complex Regional Pain Syndrome and much more. You can see his videos at Don’t Punish Pain and on his YouTube channel.

Ken began advocating for pain patients when his wife was diagnosed with Crohn’s – and he came to realize that the chronically ill were often stigmatized by society. That realization led him to make a 32-minute video called "The Slow Death of Compassion for the Chronically Ill."

January 25, 2016

If I Had Cancer

January 25, 2016/ Pat Anson

By Vikki Towsey, Guest Columnist

I am not a junkie. I am not a pill seeker. I am not a doctor shopper. I am a chronic pain patient. I am a mother, a wife and a friend. I am a social worker. I work with offenders being released from prison who have HIV or AIDS. I am their advocate. I help navigate the healthcare system for my clients.

I find it odd that for my own healthcare needs I am often left on my own to mediate between my three treating physicians. No one advocates for me or helps me navigate through the labyrinth-like healthcare system. My doctors do not communicate nor do they collaborate with each other to make sure I am provided the best care possible.

I have Ankylosing Spondylitis (AS), a chronic autoimmune disorder that has wreaked havoc on my body. I went undiagnosed for 20 years, but it was not from a lack of trying to find answers to the severe back and hip pain that left me bedridden for months on end.

To say I have suffered is an understatement. My children suffer, my husband suffers, and my career suffers. This is largely due to the belief within the medical community that women do not contract AS or they have no idea what AS is.

My diagnosis came too late to prevent the damage done to my joints, which is not repairable. Ankylosing Spondylitis has also increased my chances of early mortality.

The treatment prescribed doesn't work well. I am on a biologic, sulfasalazine, and a commonly prescribed NSAID. While inflammation has decreased due to the joint damage, my pain is still severe. It disrupts my life and causes widespread fatigue.

People with disorders like mine are often fighting not only our conditions but a system that has become adversarial for many of us. Our pain has become a scarlet letter that identifies us as junkies, pill seekers, and criminals. The CDC's proposed opioid guidelines will ensure that this continues. We are imprisoned by our suffering and endure a sentence of constantly fighting a system that is set up to deprive us of treatment that provides some quality of life.

If I had cancer, there would be widespread acceptance of any treatment that would provide improvement to my condition and quality of life. No one would think twice about writing me a prescription for opioids. In fact, not prescribing opiates would be considered malpractice. If I had cancer, I would also not be put in a federal database and I would not be looked at with suspicion by my pharmacist.

It almost creates a sense of envy for the chronic pain patient. Aside from the fact that cancer sucks, life might get a little easier for us. Before you argue that no one should wish for cancer, you are right! Cancer is horrible. So is living every day with pain so severe that it leaves a wake of victims in its path.

I didn't ask for this. I didn't choose this life. I didn't ask to be dependent on pain medications that give me the ability to take my children to a movie on a Saturday afternoon. My husband didn't ask to marry someone who cannot participate in household chores without the assistance of a pill.

I relate to the fear of asking for pain medication that will label me an addict, pill seeker, or junkie. We are let down every day by a system that is supposed to provide care for us. We are failed by doctors who took an oath to do no harm. All I want is a pain free day. Is that too much to ask?

My life is worth more than haphazard and limited care. I demand better. We all should demand better. Our doctors should demand better. If we don't demand these things, then we just create more victims. Write to your doctor, write your representative, senators, and please write the CDC and tell them enough is enough!

Vikki Towsey lives in Virginia with her family. Vikki is a social worker, professional life coach, and co-administrator of the Ankylosing Spondylitis Project, an advocacy group for people with Ankylosing Spondylitis and other chronic illnesses.

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

January 21, 2016

Miss Understood: How Arthritis Has Changed Me

January 21, 2016/ Pat Anson

By: Arlene Grau, Columnist

I've been noticing several changes in myself since turning 30 this past August, most of which are physical and have more to do with my lupus and rheumatoid arthritis (RA). I've never been the type of person who cares about her looks or what people think about me. However, when I began noticing large nodules forming on my fingers and persistent swelling around my wrists and knuckles I became more self-conscious.

It became especially embarrassing one day when I went to share how I had noticed certain nodules getting bigger and a friend said, "Wow that looks gross." I guess in a way I expected her to be more sympathetic about my situation, but some people may never understand.

I have some fingers that I can hardly bend and others that remain stiff for hours. Most of my fingers have become swollen and tender to the touch. I'd say my hands have suffered the most due to my RA and it makes life that much more difficult.

Just a few weeks ago I woke up unable to walk, so I ended up in the hospital. After having x-rays and an MRI, they ended up finding a labral tear and severe arthritis damage in my right hip, hence the reason why I couldn't walk.

I saw an orthopedic surgeon who said I can either have surgery now to repair it or get a cortisone injection to see if it helps temporarily, but based on the amount of damage my hip has I'm going to need a hip replacement in a few years. That news hit me like a ton of bricks.

I'm only thirty years old and I already have to mentally prepare myself for a future hip replacement? Not because I fell or because I broke it, but because my arthritis is so advanced that it ate away at my hip. It's a lot to take it. I feel like every time I've gotten tests done, whether its blood work or an MRI, they always find something that I don't want to hear about.

All of this and people still tell me that I don't look sick, they question my illness, or the severity of it. They question why I no longer work or what I do all day. They assume I must be having a wonderful time while my kids are at school. All assumptions because they either enjoy gossiping or they don't want to bother sitting down and getting the facts from me.

At a glance I may look like any other person. But up close you can see that I'm not your average mom or housewife.

My diseases have caused so much to my body. I have so many battle wounds and stories. Some untold, some I've cried about, and some I'm proud I've overcome.

My diseases have changed me. I'm not the same person I was when I was first diagnosed and I don't just mean that in the physical sense. In some ways I'm stronger because I've overcome so much and I'm going to continue fighting. But I also feel like I've aged and I'm tired of all the changes it's brought upon me.

They say change is good, but I don't think they were referring to the type of changes caused by autoimmune diseases.

Arlene Grau lives in southern California with her family. Arlene suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

January 20, 2016

CDC Guideline: A Good Start that Needs Improvement

January 20, 2016/ Pat Anson

By Stefan Kertesz, MD, Guest Columnist

President Obama began his 2016 State of the Union address by referencing an American epidemic of opioid overdoses. He was right to do so. The Centers for Disease Control report that 2014 saw a record of 18,893 deaths related to opioid overdose, a category that includes both medications and heroin. Given a rising tide of deaths, it is only sensible to look closely at how opioids come into distribution. There is more than one path. Doctors write prescriptions, and the pills may be consumed properly or improperly. Or they can be sold, given to friends, or stolen. Heroin is incredibly cheap and potent these days. It’s often laced with other drugs and can cause overdose in ways that users can’t predict.

A major portion of the public health response has focused on doctors and their prescriptions (disclosure: I’m a primary care doctor trained in internal medicine and addictions). Most public health authorities believe a major contributor to the rising tide of overdoses has something to do with the prescriptions for opioids we write. Our tendency to write prescriptions for pills like hydrocodone or morphine rose precipitously from 2000 to 2011.

Everyone knows a story of someone who wheedles pills out of credulous physicians. Barring a few so-called pill mills (which alone cannot account for the rise in prescriptions), most doctors writing prescriptions for opioid pills do so in response to a patient with severe chronic pain. There are an estimated 100 million Americans with chronic pain, and between 5 and 8 million take opioids for that pain.

It stands to reason that among the patients who have received opioid prescriptions, surely some (or many) should not have received them. Many doctors have decided to prescribe less, starting in 2012, according to national data.

If prescribing went down while overdoses went up these past few years, it’s fair to say that there is room for argument about precisely how doctor’s prescriptions relate to overdoses. But few would argue there is no relationship at all. Thus, great hopes are pinned on the notion that getting doctors to prescribe differently (and less) for their patients with pain will be key.

Last year the Centers for Disease Control, after consulting an extensive array of experts and interest groups, prepared a draft guideline for doctors on prescribing opioids. In December they placed notice in the Federal Register seeking public commentary. By deadline on January 13, over 4,300 comments were received.

There is a reason this document excites so much passion. In part, organizations such as the American Cancer Society project this guideline will not be voluntary, but will carry force of law.

The hope is to prevent development of addiction and overdose that devastates countless families. Yet, there are those 5 to 8 million patients who receive opioids, some of whom believe that they are at risk of losing access to a crucial medication that is helping manage their pain, improve their quality of life and overall function. As medical boards, insurers and government agencies enforce this guideline, prescribing differently from the topline recommendations is likely to become onerous, leaving many patients in the lurch.

If you listen to this conversation between this 70-year old coal miner who suffered 18 major injuries, and a chief advocate (addiction specialist Dr. Andrew Kolodny) for the reduction of opioid prescribing, you feel the tension. You will hear the distress of a man who fears being confined to bed from his pain, and the concern of an addiction doctor who believes opioid pills have done harm, not good, even perhaps to the man to whom he is speaking.

The experts convened by the CDC include many I know and respect. They have taken a fairly strong stand. They conclude that the literature shows no evidence of enduring benefit from opioids, and that measurable harms are tied closely to dose. They urge careful assessment of risk and benefit. They urge aggressive use of urine drug testing to identify patients who take opioid medication differently from intended or use illicit drugs.

In 56 pages, they say a lot more. My primary care patients include several with chronic pain, and my practice lines up pretty closely with precisely what the guideline recommends. And despite that, I feel this guideline is not yet ready, not given the power we project it to have.

For reasons I shared with the CDC, I think it reaches a bit beyond the available science in some places, neglects it in others, and misconstrues how best to translate it in the care of our patients. It risks making opioids less available to patients who are benefiting from them. It is not far from where it needs to be, but it needs improvement.

Friends, some of them national leaders in primary care, addiction and pain medicine, have urged me to publish this concern broadly.

For people interested in learning more about these concerns, I offer them in linked piece at Medium.com. I offer it to show that one can take a different stand without rejecting the science or the underlying public health commitment that I fully share with the honorable drafters of the CDC’s draft Guideline. For the readers who believe I am right, or perhaps have also misconstrued the science, I welcome your thoughts.

Stefan Kertesz, MD, is an Associate Professor at the University of Alabama at Birmingham School of Medicine. Opinions expressed are solely his own and do not represent positions of any agency of the U.S. Federal Government or the State of Alabama.

This column is republished with permission by the author. It originally appeared in Medium.com, along with the comments submitted by Dr. Kertesz to the CDC about the guideline.

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.

January 20, 2016

CDC Needs to Obey the Law

January 20, 2016/ Pat Anson

By Mary Maston, Guest Columnist

I am a chronic pain patient. I do not hold a law degree, and quite frankly with the pain I am always in, reading complicated law jargon makes my head ache. That being said, I was blessed with common sense.

The way that the CDC is holding secret meetings about the agency's proposed opioid guideline is a direct violation of federal law. This has been pointed out by Mark Chenoweth of the Washington Legal Foundation, as well as other professionals that are better versed than I.

The real question here is how long are they going to be allowed to get away with it?

“Workgroup meetings are not open to the public,” a CDC spokesperson told Pain News Network, referring to two meetings recently held in secret by a newly appointed advisory group.

The Federal Advisory Committee Act (FACA) says differently:

(1) Each advisory committee meeting shall be open to the public.

(2) Except when the President determines otherwise for reasons of national security, timely notice of each such meeting shall be published in the Federal Register, and the Administrator shall prescribe regulations to provide for other types of public notice to insure that all interested persons are notified of such meeting prior thereto.

(3) Interested persons shall be permitted to attend, appear before, or file statements with any advisory committee, subject to such reasonable rules or regulations as the Administrator may prescribe.

I have yet to see President Obama, CDC director Tom Frieden or anyone else claim “national security” is the reason these meetings are not open to the public. But I know why they want to do this behind closed doors. They know that the guidelines are wrong and have upset millions of people with hundreds of incurable diseases and conditions that are already struggling under heavy scrutiny. They don’t care about that and continuously turn a deaf ear to those who are pleading for them to stop what they are doing.

Are they even going to read and take to heart over 4,300 comments left mostly by actual patients and caregivers of chronic pain patients on regulations.gov? Do you want to know why more comments weren’t left and why many were written anonymously? It’s because many people are terrified to go against the government and they are afraid of retaliation. They already have such a difficult time finding a doctor that is willing to prescribe opioids that they don’t want to do anything to further rock the boat.

If you join any support group for any chronic illness – just pick one – there are hundreds of them, it won’t take long to realize that overprescribing is not the issue. Join my group, where pain is grossly undertreated, if treated at all, and it’s a daily discussion by a multitude of people from all sorts of backgrounds. Overprescribing may have been an issue in the past, but not anymore. The DEA made sure of that.

The CDC and the addiction specialists that helped draft the guidelines don’t care that in their efforts to save thousands of people from addiction they are sentencing millions of pain patients to a life of agony. They’ve admitted that the overdose numbers that they spout off as validation for their actions aren’t correct, but they continue to use them as a scare tactic to advance their agenda. You can’t lump heroin users in with legitimate patients who take their medications responsibly. This is flat out lying and it is fraud.

“We have heard some concerns about the process. We’ve done a lot, but want to be sure there will be no concern about the final guidelines when released,” said Debra Houry, MD, director of the CDC's National Center for Injury Prevention and Control, who is the administrator who oversaw development of the guidelines.

Some concerns? Is this woman for real!?! They obviously had the intent to release the guideline in its original form with no thought of the millions of people it would impact so drastically. They intended to just roll with it and to hell with the consequences to people in pain. The Veterans Administration is already being required to follow the guidelines. How many post war veterans do we have that have sustained life altering injuries in battle? “Just take a Tylenol or Aleve. You’ll be fine.”

Some members of Congress think this entire covert process by the CDC is dirty, that’s why they are opening an investigation into their practices and the process by which they appointed the initial advisory panel.

It’s about time, but it isn’t enough. I hope Congress also addresses how the CDC continues to conduct itself. It’s obvious to me and many others that have voiced “some concerns” that legal action needs to be taken against those who have intentions to knowingly and willingly hurt more people than they help, and breaking the law while doing it.

Tom Frieden and Debra Houry are allowing this circus to continue. They need to be held accountable and replaced. Enough is enough.

Mary Maston suffers from a rare congenital kidney disease called Medullary Sponge Kidney (MSK), along with Renal Tubular Acidosis (RTA) and chronic cystitis. She is an advocate for MSK and other chronic pain patients, and helps administer a Facebook support group for MSK patients.

January 19, 2016

Power of Pain: How to Boost Your Mental Health

January 19, 2016/ Pat Anson

Barby Ingle, Columnist

Let’s face it. Living with any chronic illness is very difficult. When it also involves pain, we are bound to experience changes in our personality, mood, and mental health.

It is hard to admit that we are depressed, snap at others, and take our physical pain out on them. My husband and I spend a lot of time helping others in pain. He has said to me that if I dealt with my pain like some other people do, we would never make it.

When I first met my husband, I had just come out of a 10 year marriage to someone else. I knew what I wanted -- to figure out what my pain was and get a cure to fix it. I had no intention of dating, let alone getting remarried.

I have a degree in social psychology and was able to keep in mind that no matter how horrible I felt, it was not the person I was with who was at fault. It wasn’t my fault either. Sometimes things are just because they are. I made a conscious effort to go above and beyond, be thankful, and to never snap at anyone helping me or choosing not to help me, as was the case with my ex-husband.

I also realized that I needed some tools to cope with my new life. I needed professional help and guidance. Anyone facing the challenges of chronic pain will have “situational depression.” It is normal and common. Who would not be depressed after going from healthy to disabled?

Not only that, but chronic pain affects the limbic system in our brain, where mood is processed. I found that my anxiety and depression rose along with all the other things I was losing. It was very easy to snap at others around me or blame my situation on others.

The tools I learned through cognitive behavior therapy helped get all of those feelings under control. I saw a few counselors as well as going to group counseling with others who were facing similar situations. I looked at it as an attitude tune-up to remind me of the life tools we need for our mental capacities to function to their best ability.

Tools that I found most helpful were setting goals, getting organized, spending time outside, meditating, not to sweat the small stuff, and finding my purpose. The “Who am I?” question was where I started. One of the best exercises a counselor had me do was write down who I was.

I had lost everything, my job, my husband, my house, and my driving privileges. I had trained my whole life to be a cheerleader. I was head coach of a division IA university and owner of a cheer/dance training company. It was my dream and it was all shattered.

I had the hardest time starting the assignment. What I was since I could remember was a cheerleader. That was all I was, all I knew, all I wanted to be. I couldn’t go back into the counselor’s office with nothing on my paper. But I felt as if I was nothing. I had lost my purpose and doctors were telling me I would never get it back, even though they couldn’t give me a proper diagnosis.

I called my psychologist and said, “I am failing again, I don’t know where to start, I am nothing anymore.”

He said, “Let’s start with your faith.”

“I am Catholic,” I told him. “Okay, write that down,” he said. “What do you like most about yourself?”

“My teeth” I replied. He said, “Write down, I have good teeth.”

I began to see where this was going. I began to look at all the things in my life that I am.

I am more than this pain I am in. I am more than one thing. I realized that all my life, I had one goal and one dream, but I was so much more. When I was done, I ended up with 78 things on my list of who I am.

I learned that I am not just a pain patient, I am well rounded and I am unique. We are all unique. Most importantly, I learned I was still a cheerleader. I was just going to have to change how I achieved and continued my purpose. Who I am and what my purpose is are two separate things that intertwine, but my purpose doesn’t define me.

I encourage people who are having trouble after developing pain to write down their goals. Write down your purpose. Write down who you are. Use it as a reminder to yourself in your toughest moment that you still are! You are important. You count. You matter.

You can accomplish your goals. The how, when, why, and who will help are yet to be determined, but you now have something to work for.

Take on the smaller tasks first. Whatever boulder gets in your way is passable. Don’t think I have to go through this, but how can I get past this. Over, under, around, walk, bus, train, plane, there is a way. If it is too big in the moment, break it down even more.

You don’t have to change your dreams and goals, but you have to find a new way to accomplish them that is not necessarily the easy path. We will all have personal failures, but it’s not over until you give up. That is just part of the path you are taking.

Let go of the worry and stress of not accomplishing what you want in a specific time frame. Just getting parts done is an accomplishment in itself. No one is perfect, even the healthiest person on earth. Live for the positivity of life and for your own mental health.

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

More information about Barby can be found at her website.

January 18, 2016

Why I’m Afraid to Go to My Pain Clinic

January 18, 2016/ Pat Anson

By Staci Dangerfield, Guest Columnist

I have an appointment to see my pain management clinic today and I am afraid.

I am always afraid before these appointments. I am afraid I'll once again be told that I am ineligible for pain medication. I am afraid that I'll again be pressed to do trigger point injections, despite their proven inefficiencies.

I am afraid that I'll be taken off one or more antidepressants and placed on others. Though I admit I am depressed, my depression has little to do with actual hormonal or emotional imbalances and a whole lot more to do with being in constant and relentless pain.

I am afraid that I will once again be passed on to a nurse practitioner or, as happens usually, a student nurse. I have yet to meet with a doctor.

I am worried that my attempts to convey my symptoms will be met with skepticism and just as often absolute negation. I feel like I am taunted by the school yard bully: "Lose weight, exercise, use positive thinking, rest more, sleep less, be more social” and so on and so on. My tears and sobs scoffed at, to the point I am distraught, giving credence to the antidepressant regime.

I am afraid that asking once again for narcotic and opioid pain relief, a proven and effective treatment for me, will lead to the “drug seeker” label. I am afraid that the moment the treatment room door closes, I will once again face dehumanization and my legitimate diagnosis becomes a game of Russian roulette.

How much more pain can I accept before I really do lose my mind and those antidepressants that I now do not need will become my lifeline to sanity, as I force my body to endure the radically painful sub-existence the doctors took an oath to prevent? Up, up, and up those dosages go until I am no longer capable of articulating my physical pain. Not that the pain goes away, mind you, because I am emotionally too numb to fight the pain.

I once read that pain is your body's way of telling you something is wrong. So why is my body being ignored in favor of shutting down my pain receptors and as a byproduct my entire emotional spectrum?

I am afraid of having to tell the pain center that my dentist ordered me 15 Norco pills because I have a massive abscess in my tooth. Today is my pain clinic appointment and tomorrow I will have three teeth extracted. Will I be punished for accepting the precious pain relief the dentist offered?

I didn't ask my dentist for pain relief. He saw my pain. He assessed how badly I needed relief and he ordered a minimal amount of medication to last the week of antibiotics, until the extraction could be done. I am afraid of the response from the pain clinic. Like a bad girl who knows she'll be severely punished.

More than anything, I am afraid of going back to the pain clinic with hope. Hope that this time there will be time to hear me. Hope that this time I will be treated humanely and with compassion. Hope that there will be a dialog of options that includes treatment of my physical pain. Hope that I will leave that clinic with a sense of peace, with a prescription for my pain. Hope that tomorrow I can wake up with a little less pain and a bit of anticipation for a better day. Hope that government stays out of my doctor’s office.

More than anything else, I want to not be afraid. I want to believe that hope is an option again.

Staci Dangerfield suffers from fibromyalgia, neuropathy, chronic fatigue, post-traumatic stress syndrome, severe anxiety, degenerative disc disease and chronic migraines. Staci lives in Alabama with her family.

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

January 16, 2016

A Pained Life: Accepting Help is Not a Weakness

January 16, 2016/ Pat Anson

By Carol Levy, Columnist

A few days ago I was walking with my friend, Jean. She had her cane in one hand and a wheeled bag in the other. As we approached the stairs going down to the walkway I asked, "Can I take the bag?"

"Oh, no. I'm fine," Jean said.

No, she wasn't. It was an additional burden to manage the bag, as well as the cane. How silly of her, I thought. It would be so much simpler if she'd let me help her.

It did not immediately occur to me that I had done the exact same thing only a few days earlier, when someone offered to help me.

I have neck and back problems. As a result, I should not be lifting anything heavy, which definitely includes the two 42-pound bags of cat litter I had bought.

I put on my neck brace. Grunting and groaning under my breath in case, heaven forbid, someone should come by and acknowledge my struggle, I pulled the bags out of the car.

Then I took the wheeled little platform I have for moving something heavy or unwieldy, put one bag on it, got on my knees and pushed it to the door. I went back to the car, got out the second bag and repeated my performance. Next I lifted them to get them up and over the door jam. Breathing heavily and already in pain, I readied myself to start rolling them end-over-end, like a Slinky, but going up stairs instead of down, to my third floor apartment.

I rarely see my neighbors but suddenly, out of nowhere, a man appeared. Without a word he picked up one of the bags and hefted it up onto his shoulder.

"Oh no," I said. "That's okay. I'm fine. I can get it upstairs. Thanks anyway."

Luck and kindness were with me, since logic and intelligence were not. He just looked at me and continued to carry it up the stairs to my front door. He then got the other bag and carried that up to my door.

After lifting or carrying something heavy, which sometimes can be merely five pounds or so, I am exhausted. Often I end up having to lie down, sometimes for hours, to get over it. But accept help? Say "Yes, thank you." when someone offers? Oh no. That is a fate worse than death.

What is it about accepting help? Is it an admission of weakness, of giving up control? Is saying, “Yes, I need help” a ceding of independence?

For me, and for my friend Jean, once we talked about it, we realized, at least for us, that is exactly what it is. We prefer to struggle, hurt and harm ourselves rather than accept help. Rather than swallow our false pride.

It is said pride goes before the fall.

We both were silly, preferring to take the chance of a literal fall. We blinded ourselves, unable to see the offering of a hand, and the acceptance of it as a gift -- a gift to the person who offers help when we acknowledge their kindness by saying, “Yes. Thank you.”

It can also be a gift to ourselves, if we see the “Yes. Thank you” not as a weakness or giving up control, but as a strength.

It takes courage to say, “Thank you. I can use your help.”

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.

January 13, 2016

The Danger of Treating ER Patients as Drug Seekers

January 13, 2016/ Pat Anson

By Emily Ullrich, Columnist

Recently the news has been covering the story of Barbara Dawson, a Florida woman who was arrested after she refused to leave a hospital that would not treat her for abdominal pain. While being escorted from the hospital in handcuffs, she collapsed in the parking lot and later died.

For many of us who are chronic pain patients, this kind of treatment is all too familiar. More often than not, when doctors see that we are on pain medications, they automatically assume that we are drug addicts and that we are “drug-seeking” just by going to the hospital.

Personally, I have so many of these experiences, that I couldn't possibly list them all. Last year, I was hospitalized for upper abdominal pain. I had been to the emergency room earlier that week for the same issue, so the doctor told me he was admitting me, “Because otherwise you'll just keep coming back.”

On my first day after being admitted, I was given no pain control and was taken off of my muscle relaxers. I got no sleep. I was told there was absolutely nothing wrong, and they couldn't find any reason to keep me. I overheard my nurse speaking to another nurse, saying that my liver enzymes were in the thousands.

I questioned the doctor, who was in the process of discharging me, about my liver enzymes. He asked how I knew about this. I claimed that I had asked the nurse, because I could tell he was angry and I didn't want to get her in trouble, although I had every right to know this potentially life threatening information. At that point, he felt pressured to keep me and try to figure out what was wrong.

Because they weren't treating my pain, my blood pressure was high and I was at risk of heart attack or stroke. Instead of treating my pain, they put me on two different blood pressure medications.

At one point, I was taken to another floor for an abdominal scan. I was in so much pain I was trembling. A nurse said, “So, you're an addict. When's the last time you used?”

I was dumbfounded. I replied that I was absolutely not an addict and asked why she said this.

“Oh, maybe I used the wrong terminology,” the nurse said. “You've been on pain meds for a long time, right?”

I said yes and she said, “Well, okay. You can't deny that, then. I just used the wrong word, sorry.”

I was suddenly acutely aware of the frequent misuse of the term “LTDU” (long term drug user), which is applied to many of us who take pain medications.

Upon transfer from my room to the exam room, I was given my medical records to hold. I opened and read them. Not surprisingly, I saw multiple remarks about “drug seeking behavior.” The nurse told me I was not allowed to read my own records. I said, “I'm allowed to hold them, but not read them? They're mine!”

“Yes. Well, it's hospital policy,” she replied.

I was hospitalized a second time last year, for the same issue, plus bradycardia. The admitting doctor was nasty to me, saying, “I am admitting you, but you will not be given one drop of pain medication other than Tylenol.”

Eventually, I was given a small dose of pain medication, but I was still trembling and vomiting the pain was so bad; yet the doctors refused to raise my dosage. I called the nurse, who got me a patient controlled pain pump. This was slightly more helpful, but when I let them know that the dosage was not controlling my pain, they took it away entirely. The gastrointestinal team came in and talked to me, but never came back.

I was discharged within three days, with no answers. Over those three days, I was told by one nurse, “If you call me every time it's time for your medication, you are called a ‘clock watcher,’ which we consider a form of drug-seeking.”

I was again gobsmacked. Later, another doctor came in and said, “We have no reason to believe you're in pain.”

I said, “Why would I go through all of this just to get a mediocre amount of pain medicine?! I'm not drug-seeking, I'm relief-seeking!”

The doctor said, “Well, there's not much difference.”

During this second stay, I had to call the charge nurse and often the patient advocate, just to get minimal pain control. Every time, I pointed out their sign, which said “If your pain is not relieved within 30 minutes, please tell your nurse. Our goal is to treat patients with respect and dignity.”

I pointed this out so many times that instead of heading their own policies, they literally changed the sign! They came in and screwed a new sign to the wall, which mentioned nothing about pain care or patient rights.

In August of 2014, before the two events described above, I had my gallbladder removed. I was already on pain medications for chronic pain and I expressed concern to the doctor that my pain after surgery would not be adequately controlled. He said, “Don't worry. You'll get your precious Percocet. One prescription, that's it!”

I was hurt and offended that he was treating me this way, as though I would have an organ removed just to get pain medicine! But, it got worse. As I was waking up from surgery, my eyes were not yet open, and I heard one nurse say to another, “The doctor said she's going to claim she's in pain, but just get her out of here.”

I opened my eyes and declared, “I heard you!” They both grew silent, and pretended that never happened.

This past August, on my 40th birthday, I landed in the ER again. Again, I had severe upper abdominal pain and was told that, “Nothing is wrong, and you will not be given narcotic medication.”

I asked the doctor to look at my liver enzymes. He saw that they were extremely elevated, and gave me a dose of pain medicine. The next thing I knew, the admitting doctor was in the room, telling me that I was “getting what I wanted” and I was going to be admitted. She introduced herself, and then proceeded to verbally steam roll me, telling me that I would not receive pain medications while I was in “her hospital.” She told me that I was already “unnecessarily on pain medicines.”

I questioned her, but she curtly cut me off. “I see that you have a bunch of 'garbage pail diagnoses,'” she said.

I was furious. I asked if she even knew what some of them where, and if she knew better than the doctors from “her” hospital who had made those diagnoses. She rolled her eyes, and continued with her speech on the lack of treatment I would receive while admitted.

I said, “So, I'm being admitted for pain control and further testing, but I won't receive pain control beyond the medications I currently take?”

“That is correct,” she said, her snide attitude seething. I told her that it was my 40th birthday and the last place I wanted to be was in the hospital, but I really wanted some answers. She just stared at me. I decided that I would take my chances, and go home. If this was any indication of the abusive treatment I was in for if I stayed, I wanted no part of it.

I was discharged with a diagnosis of intractable abdominal pain. Three weeks later, I looked at my online medical records, and noticed that my diagnosis had been changed to “narcotic withdrawal.”

Four years ago, I developed a severe kidney infection. I was deemed a drug-seeker by numerous ER's, without any testing for my symptoms. Eventually, a doctor took me seriously, but by then, I was developing sepsis, and my life was in danger. You can read the full story here.

Even during this horrible incident, I was taken off my regular pain medication and was given a tiny dose of IV pain medicine, equivalent to about half of my home medications. The nurses watched me writhe and cry in pain all day and night, until I spent two days in and out of consciousness. They argued with the doctor on my behalf and I argued with him, but nothing changed. I was still supposedly “drug seeking.”

I could go on and on, but I think by now you get the point. Our lives are in danger, on the off chance that doctors may accidentally give medicine to someone who is trying to get high. This is absolutely unacceptable.

Also, I'm not sure how much validity is behind their theory. It seems to me that if someone wanted to get high, buying drugs off the street would be much easier and cheaper. Like most of us who take pain medication to treat our pain, I do not feel any euphoria, just a little relief.

How is this kind of behavior in line with a doctor's Hippocratic oath to “First, do no harm?” It seems the oath is now “First, judge and abuse.”

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS/RSD), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, Endometriosis, chronic gastritis, Interstitial Cystitis, Migraines, Fibromyalgia, Osteoarthritis, Periodic Limb Movement Disorder, Restless Leg Syndrome, Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and Irritable Bowel Syndrome.

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

January 08, 2016

My Life with CRPS

January 08, 2016/ Pat Anson

By Chrystal Weaver, Guest Columnist

I have been suffering from Complex Regional Pain Syndrome (CRPS) Type 2 for nearly six years. I first got this disease as a result of a botched back surgery called a kyphoplasty.

The bone cement they used was too thin in consistency, which allowed it to travel to my epidural space and kill off most of the axons in my nerves; which in turn caused my left foot and ankle to be paralyzed with indescribable burning pain, electric shock pain, bone crushing pain, and pins and needles pain.

It’s been nearly six years of living hell.

I was 46 when this happened and I was working as a CPA in Florida. At the time, we had pain management clinics in abundance and doctors were not afraid to prescribe opiates. They worked with you to get your dose to the point where it was effective for your individual needs, without causing side effects like over sedation.

The dose of medication I was on took my pain down from a 9 or 10 to a bearable 3 or 4 level. I was able not only to continue to work, but to attend my son’s baseball games, go to the beach with him, take him on vacations and be an active mom.

Then when Florida got all the bad press due to pill mills, and the DEA and state law enforcement cleared out the bad operators, good doctors also got caught up in the net. This had a profound effect on doctors who were using pain medication in good faith and a “chilling effect” occurred. Pain management doctors left the field in droves. Those who remained were unwilling to maintain me on the regime I was taking and that was working for me.

CRPS has the nickname “the suicide disease” for a very good reason. It is not curable and there is no effective treatment for the disease. Any medication, narcotic or non narcotic, is prescribed “off label” because there is not one medication approved for CRPS by the FDA. I tried spinal cord stimulation, nerve blocks, Prialt, antidepressants, anti-seizure medication, and acupuncture. I couldn’t bear for my foot or lower leg to be touched, so massage was not an option. I even had high dose ketamine infusion treatment at the University of Miami. All to no avail.

Because of the aggressive law enforcement tactics that shut down the bad operators, the pendulum has swung the other way to the extreme. There were huge unintended consequences in Florida’s efforts to shut down the pill mills. I was taken down to about 30% of the old dosage I was on, which allowed me to work and be a great mom. The new dosage never gets my pain below a level 6.

I ended up losing my job due to poor performance and had to apply for Social Security disability after a 25 year career in the accounting field. I stopped going to baseball games, that my son wants desperately me to see, but I just cannot go. I am now home-bound and cannot perform the activities of daily living. If I did not have a 12 year old son, the pain has been so unbearable I would have taken my life by now.

I do not exaggerate when I say this pain is like being a prisoner of war. It can take the most mentally sound, happy and stable person, and make that person wish that they would not wake up. This should not be happening in the most advanced country in the world.

The saddest part of all is that the government actions did not even solve the problem of people abusing drugs and overdosing. The people that were abusing narcotics have switched to the much easier to obtain and much cheaper heroin. The population that has been greatly harmed by what the government has done is the legitimate chronic pain patients in Florida and indeed all over the United States.

The heavy handed tactics used by our government gained nothing. The people who want to abuse drugs have turned to a much more dangerous substitute, where they have no clue regarding the potency of what they are putting in their bodies, nor do they have any idea of the contaminants they are ingesting. We have traded a decrease in prescription opiate abuse for increased heroin abuse, while leaving legitimate chronic pain patients severely undertreated and in many cases untreated for their pain.

Every person is unique. Cookie cutter recommended dosages do not work for human beings. There will always be outliers on both sides of the bell curve. Some people do well with small doses of opiates and some people require higher doses to bring their pain down to a manageable level.

I understand that the CDC’s prescribing guidelines are meant for primary care physicians. However, it is highly likely that pain management doctors will follow the guidelines as well. Even if a pain specialist were to prescribe doses above the guidelines for patients with diseases that are debilitating painful, it would be impossible to find a pharmacy willing to fill the prescription. We already are having a very real problem being able to fill prescriptions now.

I cannot imagine how much more difficulty chronic pain patients will have accessing their medication should these guidelines go into effect. I cannot even count how many times I have been forced into withdrawal after spending over $150 on taxi fare going from pharmacy to pharmacy, only to be told that they do not have the medication in stock or that they no longer carry that medication. I am a single mother. I have no family living that can help me take care of my son when I lay on the couch in level 10 pain from CRPS and the pain of withdrawal. No one should be made to suffer like this. No one.

I don’t enjoy taking narcotics. I purposely had my baby at home with midwives and no pain medication or epidural because I did not want unnecessary medical interference with what is a natural occurrence. I can take pain. It was my first and only child.

I explored the possibility of getting my left leg amputated below the knee if that would free me from the pain of this disease. But it does not take away the pain and CRPS does spread. It is now in my right foot and lower leg.

So there is nothing more that I can do medically to treat the pain effectively, except for taking opiates at the dose and combination that was effective for me. But I have no way of obtaining that same dose and combination of short and long acting opiate medications that allowed me to live at a level 3 or 4 on the pain scale. My son needs his mother and for the last 5 years I am still breathing, but I certainly am not living.

I also want to emphasize that there are numerous diseases and conditions that are not malignant, but are just as painful if not more painful than cancer pain. CRPS is listed as a rare condition by the National Institutes of Health, but there are many more orphan and rare diseases whose primary feature is severe debilitating pain with no cure and no real effective treatment.

Alarmists cite an increase in opiate prescriptions without putting it in the proper context. Most baby boomers are in their fifties or sixties now and people are living longer due to medical advances. Sun Belt states like Florida have a higher retirement population than northern states do. Pain was undertreated in the early 1990s before pain was classified as the fifth vital sign.

Alarmists also point to the number of deaths from opiates being over 16,000 annually. But they have no way of knowing if that person intended to take their life or if the death was accidental. 16,000 deaths does not an epidemic make. I shudder to think of the real epidemic that will occur if these arbitrary guidelines are adopted by the CDC. Wounded veteran suicides will dramatically increase, along with suicides from 100 million chronic pain patients in this country. Some will begin to abuse alcohol to try to get relief. I’m certain that some will be willing to break the law and turn to the streets for heroin if they happen to know where they can obtain it.

Pain should be managed as we manage diabetes in this country. You are prescribed the number of units you need to get your blood sugar as close to 100 as possible without causing your blood sugar to drop too low. Pain has been subjective until the advent of the functional MRI. Pain doctors can verify that you are in pain using fMRI.

We would never lock up 100 people in prison if one of them were guilty of murder just to punish the one murderer. But this is precisely what has happened in the treatment of chronic debilitating intractable and incurable chronic pain. In order to protect a small portion of the population from themselves, our government has cast 99 innocent people in prison in order to punish the one murderer.

Drug addicts will always be able to obtain their drug of choice, while chronic pain patients languish in their homes unable to participate in life; waiting and wanting to never wake up because the pain is going to be the same as the day before, just like the movie Groundhog Day.

I was very active and enjoying my life, my career and my son until one medical procedure changed my life forever. Your life can change in a blink of an eye. A loved ones’ life can change in the blink of an eye. Every human being deserves to have their pain managed appropriately. Anything else amounts to torture.

Chrystal Weaver has submitted these comments to the CDC. The public comment period on the CDC's opioid prescribing guideline continues until January 13th.

You can make a comment by clicking here. The draft guidelines and the reasoning behind them can be found in a 56-page report you can see by clicking here.

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

January 07, 2016

My Journey From Doctor to Chronic Pain Patient

January 07, 2016/ Pat Anson

By Lisa Kehrberg, MD, Guest Columnist

I'm a 41-year old family practice physician living in the Chicago area. I worked in private practice directly after residency and then worked for the Veterans Administration in an outpatient clinic the remainder of my short career.

Much of my work involved treating patients with chronic, non-cancer pain. Little did I know at the time, this was more of a training course for me to become the very patient I was treating.

In 2011, my 39-year old big brother died suddenly and unexpectedly at home. He was a criminal defense attorney living in our home state of Oklahoma at the time. His death was shocking since I was unaware he had any serious medical conditions. Getting his medical records was even more shocking. His physical symptoms were attributed to psychological causes.

His death was the worst life situation I had experienced. I'd never felt such emotional pain. I also began to have physical symptoms. I had bouts of severe abdominal pain, headaches, vomiting, dark urine, numbness in my hands, and fatigue.

In 2013, when I was the same age my brother died, I had very severe abdominal pain with vomiting and foot drop. This time the pain was too intense to tolerate and I went to an emergency room. I was admitted and had a CT scan, endoscopy, and a colonoscopy. All of these tests were unremarkable, yet I was getting sicker each day.

Initially, when speaking to the hospital doctors involved with my care, I assumed the diagnosis would be found and I'd receive appropriate care. The first surprise was, after admission, they refused to treat my excruciating pain. I was doubled over, rocking, vomiting, and crying with the worst pain of my life. Worse than labor, appendicitis, or anything else I'd experienced. It was a hot, burning pressure that was like lava and hot razor blades filling up my abdomen. My stomach distended to appear 9 months pregnant.

Doctor after doctor walked in and witnessed this and continued to refuse ordering opioids. After all the tests were complete and normal, the doctors were very rude to me and implied this was all a psychological problem.

I was shocked and in disbelief. How could my colleagues not believe me? Did they think I was lying? And why would I lie? I had a busy life with two young children, a husband and worked full time as a physician. I had rarely gone to doctors in my life and only taken opioids after the few surgeries I had.

Clearly the doctors didn't listen or believe me, because on day 3 of the first hospital stay, I was discharged home, doubled over in the most excruciating pain ever. I was unable to tolerate even liquids and vomited continuously. At home I never even made it upstairs. I lay on my couch getting sicker and sicker. I was getting short of breath and having palpitations. My pulse was very rapid and blood pressure high.

I went to a different hospital emergency room within 24 hours of discharge from the first hospital. After about a week of tests, the doctors were able to diagnose me with a rare genetic metabolic disease called acute intermittent porphyria.

Before figuring out the cause of my pain, doctors at this second hospital not only listened to me, but believed me. My pain was very aggressively treated the entire time I was there. I was believed, as all patients should be. Time wasn't wasted on judging and all energy went towards helping me.

Eventually I received hemin, which is an infusion used to treat porphyria. I was diagnosed and received treatment just in time and fortunately I survived, unlike my brother.

Learning to Live with Porphyria

Because the disease had became so severe before being diagnosed and treated, I have permanent nerve damage. I have severe abdominal pain from visceral neuropathy every day. I have also had back-to-back porphyria attacks since 2013. Porphyria attacks are known to be excruciating and a patient experiencing one will normally be hospitalized and get IV morphine.

What happens to patients like me who have back-to-back attacks without a break ever? Do I live in a hospital? I spent the first 3 months of this ordeal hospitalized the majority of the time. I began to wonder if I would spend the rest of my life as an inpatient. But I wanted to live and go back to my life somehow.

The only way to stay out of the hospital is palliative care; treating the symptoms at home. I've been unable to work and spend most of my time too sick to leave my house or do much. The disease is very unpredictable, so it's impossible to plan much. At least I can see my children every day. I survive by putting my energy into loving my children and taking things hour by hour. Just making it through one day is a challenge.

One of the most common causes of death from porphyria is suicide. This isn't surprising. I always wonder how people who are sick like me keep surviving. To live in continuous excruciating pain every minute of every day with no end in sight is quite the challenge. Now imagine living this way with no pain medication. I will tell you that it's not possible. The pain from this disease if left untreated is not compatible with life.

At that first hospital, I tried to find a window I could open and jump from. I felt like I was on fire. I wasn't depressed. I was in pain. How would someone like me exist in life without pain medication? I couldn't. Impossible. It would be like performing abdominal surgeries on patients without anesthesia. It's so beyond my comprehension how the medical community can have such little empathy for those who are sick, in pain, and disabled.

My palliative care doctor is wonderful. He has compassion and listens to me. He believes me and doesn't judge. He has saved my life and the reason I'm able to attempt living life and not continuously be readmitted to the hospital.

Last summer I went to a new doctor who specializes in pain and is a physiatrist. I was hoping he may have some ideas. He listened to my story, then said he couldn't help me since I took opioids. He told me my pain must be "emotional.” He said patients without cancer should not be taking opioids chronically.

I asked him what someone like me can do. I explained it’s like having a blow torch in your colon all of the time and how do you exist that way? He shook his head and rolled his eyes. I left crying.

I still cry when I think of that interaction. How could a physician, a person supposedly trained to offer healing and compassion, treat any human being this way? If I was healthy and was working in the same hospital as this doctor, he would be inviting me to lunch. But because I met him while sick and disabled, I'm judged. No compassion, much less treatment.

Now that I've entered the world of chronic pain, I've had the opportunity to talk to hundreds of patients suffering like me. The majority have uncontrolled pain. They are forced to jump through many hoops each month just to get the medication needed to offer a little relief. I've talked to many who plan suicide someday, because they are unable to get appropriate pain management. This isn't depression. It's pure physical torture. I can't imagine people needlessly dying because they are unable to get medication to ease their suffering. Medication that's available. These people have children, are someone's child, have siblings, friends, etc.

Physicians see a patient for 10-15 minute appointments and don't understand that the person’s pain continues after that office visit. Physicians who think opioids shouldn't be prescribed for chronic non-cancer pain are wrong. Ask these same doctors how they plan to treat the pain and you learn there is no plan.

I suspect these doctors don't understand the concept of continuous pain. If a doctor refuses to treat a patient’s chronic pain and that patient commits suicide from pain, then somebody should be held accountable. This is criminal and completely preventable.

I'm saddened to see what's happening with the CDC's opioid prescribing guidelines. I would really like the CDC to suggest how to treat my severe back-to-back porphyria attacks. Too many doctors are being investigated for opioid prescribing. This is meant to scare doctors not to prescribe. Doctors should be receiving training on how to prescribe opioids and treat chronic pain patients. Doctors who treat chronic pain patients are saving lives everyday. They should receive only praise.

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

Lisa is also featured in this report on Acute Intermittent Porphyria:

January 06, 2016

8 Tips for Living with Chronic Pain

January 06, 2016/ Pat Anson

By Ellen Lenox Smith, Columnist

Getting a diagnosis of chronic pain or any condition that will be with you for the rest of your life is heartbreaking and overwhelming. But when the dust has settled, you have mourned your old way of life and begun to accept the new life you will have to adjust to, there are things you need to think about to make the rest of your journey more productive and peaceful.

1. End anger and redirect

It is so easy to get stuck feeling, “Why me?” or “What did I do to deserve this?” It takes courage and strength to turn this around, put a smile on your face, and instead learn how to cope with what you have been given.

Awhile back, a doctor’s letter was posted online on what it is like to deal with a patient who has a chronic problem that will never get better. It was an amazing insight into what goes through a doctor’s mind. They go into medicine to help others and people like us come to them that don’t fit into that box.

Remember, they are human and it will bother them not to be able to fix you. Their compassion is what we need. When a doctor shows through his words and actions they’re trying to find solutions for me, I come home grateful that they care. We can't expect the medical field to fix the impossible - but we also have to live with hope and not give up.

2. Prepare for appointments

When you go to a doctor’s appointment, we all know there is usually very limited time and if you are not careful, you’ll forget to ask things that are important. Trying to call the office after and asking for an answer to those questions later can be an annoyance for them and is preventable.

Try to go to the appointment prepared. Living with a complicated condition, you owe it to yourself to be prepared so you stay on point with what needs to be accomplished. To help get ready:

Keep a list at home before the appointment and jot down things that pop into your mind that you want to address and then take that list with you.
If you have a lot to cover, consider making a second appointment to cover the rest.
Arrive with your medical cards and co-pays.
Have a list of your current medications, dosages and supplements.
Have a list of any medications you have reacted to.
Have contact information of other doctors treating you.
Have a list of past surgeries and important tests and the date and location of where they took place.

I keep my medical records on file so I can refresh it with information such as new medications, tests, surgeries, etc. and make sure I keep a copy in the car in case of emergencies.

3. Be willing to think out of the box for solutions

As you accept a long term health issue, another thing you want to consider is keeping an open mind. New ideas, tests, treatments are always happening. Try to think out of the box and if something can’t hurt you but just may help you, consider giving it a try!

4. Learn to put things to rest that are out of your control

You are already fighting with your emotions coping with a chronic condition. At some point, it is helpful to learn to let things go that are just out of your control. You didn’t ask for this condition, so why remain angry?

Your life will never be the same, so try to find peace and redirect towards more reasonable and productive activities. Maybe you had to step away from your career, but there could be something new you can take on to supplement your income. Or maybe you can find a good opportunity to advocate to help others coping with a similar condition.

5. Patience and more education

We have to learn to accept, although it is frustrating, that not all doctors can possibly know how to address all of our difficult conditions. Take this issue and help to make the changes needed. Consider speaking out by educating those that are trying to help you and those that have no knowledge. Possible suggestions:

Take copies of helpful information to hand to them and ask them to read
Ask to speak to staff, young medical students, nursing students, or physical therapy students
Set up awareness tables at local events
Write letters to the editor at local and national newspapers
Call your congressman for suggestions
Set up a pain awareness event to help educate others and bring in a guest speaker or panel forum

Be proactive and help with the much needed education, so the next person in line with what you are facing has an easier road to follow!

6. Start a support group to help others – not to just sit and complain

Along with educating the medical field, you also need to think about a support system that can help others like you in the community. We have set up a site where we list willing doctors that will take our difficult cases, brought speakers into our support group, and shared with each other to try to soften the journey we are on.

Try to prevent the group from using it as a format to complain and whine, but instead use it to educate and help direct each other.

7. Prepare for a hospital emergency

This topic was approached by Barby Ingle in a recent column, Power of Pain: Making a Hospital Stay Easier. I encourage you to read it. There were many helpful tips suggested to prepare for the possibility of an emergency visit and also for a planned surgery.

We are responsible to know about us and share our information, so think to prepare this while you are alert and able to be as complete as possible. And share with someone where you keep this list. I always keep a copy in the car to be safe!

8. Be grateful to those that reach out and try to help

A person living with chronic pain becomes a host of many issues and that can be overwhelming for others too. So when someone reaches out and cares about you and tries to help in any capacity, remember to count your blessings.

We have all experienced some close friends, family and even medical personnel that have chosen to step away instead of embracing us. It is painful to experience. So when you meet anyone who is kind to you, remember to focus on that and try to let go of the hurt from the others.

We don’t need to add any more stress to our lives, feeling let down and disappointed by those others. And believe me, it is easy to write this and harder to follow. Look and treasure those that come into your life due to your circumstances and try to not look back!

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.

January 05, 2016

Communication is Key with Chronic Pain and Illness

January 05, 2016/ Pat Anson

By Jennifer Martin, PsyD, Columnist

Have you ever felt like the people in your life have no idea what you are going through? Like they just don’t get it?

Your friends keep asking you to go out with them for a late night, even after you have told them a thousand times you can’t do things like that anymore.

Your husband doesn’t understand why some nights you just don’t want to be touched.

Your parents don’t get why you can’t do 10 things per day like you used to.

The truth is, unless it happens to them, your loved ones will never fully understand what you are going through. And you can’t expect them to. There are some things you can do however to try and ease some of your frustrations. In my opinion, communication is key. And if you are thinking right now, “All I do is communicate and they still don’t get it,” then maybe it is time to try a new tactic.

It is essential to find a way to communicate with your loved ones about your wants and needs. This is so essential because everyone’s wants and needs are different and we as humans are not mind readers.

Your loved one may think he is helping you when he does the laundry so you don’t have to, but for you that may not be something you want help with. It may be the one activity you can do without pain and it may help with your sense of purpose.

Or you may want your very active family to slow down a little because you can’t keep up anymore without pain and exhaustion. But you haven’t told them yet because you don’t want to change their way of life on account of you.

How are the people in your life supposed to know these things unless you tell them?

Or maybe you have tried to communicate these things and they just don’t get it. What do you do then?

The first step is to find the right time to communicate. Over drinks in a loud bar or right before bed when everyone is tired may not be the best time. Find a time to have a sit-down conversation in a quiet room with your loved ones, whether it is one person at a time or all together. Think about what you want to say beforehand and write down some notes, so you make sure to talk about everything you want to.

Next, if needed, educate them a little on your condition and how it affects you. You may be surprised by how little people know about chronic illnesses, even those closest to you. They may understand the basics about your condition, but not enough to help you in the way you need them to. They may not understand how dramatically life has changed for you or how much you struggle.

Finally, talk to them about how they can support you. Tell them what you want from them and what you need from them. Mention some of the things they are doing that are very helpful and that you would like them to continue and then help them understand what you need them to do differently.

For example: “It is really nice of you to help me with the laundry but that is something I would like to do on my own. It gives me a sense of purpose and makes me feel like I am accomplishing something. Instead, I would really like for you to help more with the dishes. That is more difficult for me to do and it really hurts.”

It may take more than one conversation for your friends and loved ones to really begin making the changes you would like. But if you keep gently reminding them what you want and need, it is likely that you will see some changes.

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.

Latest Stories