Why I Hate February

By Crystal Lindell, Columnist

I effing hate February. First of all, it should be spelled Feburary. It’s called phonics, people.

And then, everyone who is happy and well-adjusted gets to brag about the fact that they found true love for a whole freaking day. The Bears are never in the stupid Super Bowl. And there are no longer any Christmas lights to get us through the eternally dark days.

Also, it’s the anniversary of when I first got sick.

I guess that’s the real issue. I will forever associate it with the worst thing that has ever happened to me. Sorry, February.

Feb. 4, 2013 was the day I went to the ER, and it means it’s been three years exactly since I first woke up with rib pain. Even though I’ve been doing better lately, I’m still extremely broken — both physically and emotionally. My ribs still hurt if I do too much, or get too stressed, or rain is coming, or Pretty Little Liars gets too intense.

And I’m having the worst anxiety from the long-term morphine withdrawal. 

Like anxiety attacks that leave me crying in the middle of Target on a Friday afternoon for no reason, other than the fact that I have convinced myself that I’m never going to get married or have kids, and that I will likely die broke and alone in an apartment filled with old newspapers and cats. And I’m allergic to cats.

It sucks.

Every day when I wake up I have to constantly tell myself: Today is a new day. The sun is up — again. The sun always comes up. And today you get to start over. Today will be better.

I have been trying to look back over all the progress I’ve made since last year at this time — I lost weight! I feel mostly better! I got out of a relationship that needed to end! But I usually just end up thinking about what my life would have been like if I had never gotten sick.

My painniversary is one of those days that stop me in my tracks. It’s bigger than New Year’s and more stunning than my birthday every year.

It’s one of those days where I woke up three years ago assuming my life was just going to go according to plan, but instead the world ended. It’s the kind of anniversary nobody expects to ever have.  

They say that Virgos are really hard on others, but it’s only because they are hardest on themselves. As a Virgo, I can tell you that it’s true; I’m totally judging you, but it’s only because I think I suck.

I should have lost more weight by now. I should be married with kids by now. I should have finished my freaking book by now. How come I can’t get completely off the morphine? What is wrong with me? These are the thoughts that constant anxiety and horrible pain plant in your head.

I wish it was different. I wish I was a cliché motivational poster or something and I could write about how I’m a better person now — a stronger, more compassionate person. How being sick made my faith stronger and made me amazing. But that’s not real life. Being sick didn’t make me stronger. It made me weaker and it broke me into a bunch of shattered pieces and it’s going to take a long time to put me back together.

I’m using this app called Calm to try to meditate. I even paid $9.99 for a month worth of extended meditations. I’m forcing myself to work out. And I’m trying to write through all my emotions.

But at the end of today, it’s still today. The three-year anniversary since I first woke up with rib pain, went to the ER and everything I ever knew got all effed up. 

Tomorrow is a new day though. The sun will come up — again. The sun always comes up. And tomorrow I get to start over. Tomorrow will be better.

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.

How I Found Hope for Fibromyalgia

By Lynn Phipps, Guest Columnist

The year 2004 began for me a decade-long nightmare. Bedridden with severe body pain and disabled from 3 migraines per week, I lost my career as a social worker, ironically working with people with disabilities. I lived with severe pain and bone crushing fatigue daily.

Before I became ill, I didn’t believe in fibromyalgia. I was so wrong.

My diagnosing physician treated me with the standard medications for fibromyalgia, chronic fatigue, post traumatic stress disorder, migraines, anxiety, depression, and pain. None of the three FDA approved fibromyalgia medications worked. A combination of Norco and Butalbital taken every 4-6 hours managed the pain and migraines, giving me some ability to function.

Over time, I was able to take the pain medications less often, every 6-7 hours. I was taking care of my hygiene, my family and home again. The pain medications allowed me to move more, which is essential for managing fibromyalgia pain. I began exercise again for about ten minutes a day.

I remained his patient for 7 years until he yelled and humiliated me when I asked for a prescription for one migraine pill while out of town. I had forgotten to pack mine. He treated me like a drug addict and called me a liar. I was stunned, as that was the only time I had ever asked him for pain medication. I fired him.

Only one physician out of thirty was willing to take my case because it was so complex. I had to wait eight months for an appointment.

lynn phipps

In the meantime, I was seen by a PAC (physician assistant, certified) at a local clinic. I also tried alternative therapies such as acupuncture, massage, and herbal remedies. I tried hydrotherapy, saw countless physical therapists and chiropractors, all claiming they could cure me. Nothing worked. I was becoming fatigued to the point that I could no longer drive to my appointments. Discouraged, I gave up all hope of getting better.

I was referred to a pain specialist whose specialty was to find the nerves causing the headaches and cauterize them. The theory was that scar tissue would then form on the nerves, blocking the pain. It didn’t work. I was afraid at every appointment that he would stop prescribing Norco because he did not believe in pain medication. One year later, he did.

I couldn’t believe that a pain specialist would take away all of my pain medications. I hadn’t misused or abused them. I took less than prescribed. It was cruel. He helped me titrate off of Norco, because studies indicate they cause rebound headaches. He was right, but I was still in so much pain that I was not functioning. Two years with no pain relief had him referring me to a pain psychologist.

The pain psychologist determined that I was not a meanderer; that, in fact, my pain was legitimate. Vindication! He then changed my life by telling me that if I were ever to get well, I had to go to a larger metropolitan area.

A google search led me to an MD in San Francisco who specializes in treating fibromyalgia. A fibromyalgia patient herself, she understood my diagnosis. She explained that she got her life and career back after two years on something called the Guaifenesin Protocol, which includes taking an expectorant drug to clear airways in the lung. It was not a cure, but followed precisely, would reverse the fibromyalgia symptoms.

The basic principles of the Guaifenesin Protocol include finding the proper clearing dosage, eliminating the use of all salicylates (a natural chemical found in plants, as well as household and hygiene products) and following a low-carbohydrate hypoglycemic diet to combat low blood sugar, which mimics many fibromyalgia symptoms.

The Guaifenesin Protocol helps sluggish kidneys excrete the build up of phosphates, which are believed to be the cause of fibromyalgia symptoms, at a rate of six and a half times faster than without it. Over time, this leads to the reversal of fibromyalgia symptoms.

For the first time in three years, I felt hopeful. The doctor examined me and agreed with the  fibromyalgia diagnosis, stating I was one of the worst cases she had seen. She also reviewed recent lab work, discovering that my blood sugar was slightly elevated. She suggested a hypoglycemic diet. Within 6 weeks of the diet, I had more energy and less pain.

I have been taking Guaifenesin and following a hypoglycemic diet for 14 months. Before I made these changes, I had 62 of the 68 most generally accepted Fibromyalgia symptoms.

I now have only 14 fibromyalgia symptoms. I am taking only four prescription medications instead of thirteen. I am off all pain medications. And I am no longer bedridden.

Lynn Phipps lives in northern California with her family. Lynn has a degree in social work and is currently helping fibromyalgia patients navigate the Guaifenesin Protocol at FibromyalgiaWellness.info.

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.

How to Stop Hospital Horrors

By Ellen Lenox Smith, Columnist

I am guessing many readers will be able to relate to this topic -- the horrors of being in a hospital with a complicated chronic condition like mine, Ehlers Danlos syndrome. Whether it is a planned surgery or an emergency visit, patients who do not fit into a “neat box” often find that staying in a hospital can be insulting, frightening, and at times dangerous.

If you are reading this as a medical professional who works in a hospital, I hope you will think about what it is like to be a patient in this circumstance and consider helping to change the staff’s attitudes and ways.

I will share three short stories to help you to begin to understand the horrors that can happen.

One of the most horrifying things my husband and I faced was when we flew from our home state of Rhode Island to Wisconsin to have my feet reconstructed. My life, after the surgery, was to be five months in a wheelchair, non weight bearing. It was not an easy assignment to face.

After the successful surgery, a hospital social worker was assigned to find a safe rehabilitation center for me until I was strong enough to  travel back home.

She arrived in the room four mornings later to announce that not one place would accept me because I was “too complicated” due to my drug and food reactions. As a result, I was to be discharged to home. We were sent that afternoon to a motel that turned out to be filthy. I had to use a bedpan since I was no longer able to walk and then flew home the next day. It was humiliating and also dangerous to send me home just a few days after major surgeries, but we had nothing we could do to change this.

Lesson Learned: I did, in time, write to the president of the hospital to let him know how unacceptable this treatment was. From that point on, we were given a wonderful team to help make sure this never happened again. We have returned year after year to the same hospital for my surgeries.

Another event was dealing with IV’s. Because of my condition, IV’s were difficult to hold in place and many times became infiltrated, sending medication into the surrounding tissue instead of the blood stream. One night I kept telling the nurse in charge of me that the IV was dislodged. I was told all was just fine, even though as he administered the pain medication into the IV it stung and made the location of the injection swell immediately.  

He said  to “get some rest, you are just tired.”  Well, I was right, the pain medication did not get into the blood. So, I had to suffer with unnecessary pain until an ICU nurse came down and was able to successfully get the IV catheter into a vein and stay there. This all happen in the middle of the night while I was in post op, exhausted and paying the price for a nurse not willing to listen to me and take me seriously.

Lesson Learned: Today, I no longer get an IV. We either use a PIC line or port for surgeries. They hold and work for me!

My next story involves a friend who was admitted to a hospital so sick that she was not able to get out of bed without passing out and going into seizures. Due to her complications, she was not able to get the care needed and was transported to Johns Hopkins Hospital. Within 24 hours, after a standard MRI while laying down, it was declared that she was to sit up, take the neck collar off, and be discharged.

The problem was the only way to get a true answer for what was wrong with her was to have an MRI while standing up.

After much hard work by her mom and husband, my friend was transported to Doctor’s Community Hospital; where it was determined, via the correct neurosurgeon who ordered the correct imaging, that she needed a neck fusion quickly to save her life. Yet, two hospitals wanted to discharge her home and felt she was just fine.

Lesson Learned: Be sure to get to a hospital that your skilled doctor has connections with. Don’t give up until you find the right doctor at the right hospital, for if my friend had listened to the first two places, she would not be alive today.

So what can we all do to change the potential of inappropriate treatment, or even no treatment at all?

1) Try to deal with your difficult issues, as much as you can, at home and with doctors you can trust, instead of running to a hospital. My husband and I have a pact to stay away from hospitals as much as we can to keep me safe, even though we both admit that we would so appreciate knowing we could go there safely for help.

2) If there is no choice but to go to the hospital, come as prepared as you can with files of your medical records, including lists of medications, medications you react to, supplements, diagnosis, previous surgeries, contact info for doctors that treat you, and tests done along with their dates and locations.

3) I have a packet of all this information that we keep in the car “just in case.” I also keep the records on my computer and can easily add new information when needed.

4) Make sure your doctor is part of the hospital you go to or is able to connect with the right people in the one you must get to.

5) If you have a negative experience, write the president of the hospital, not to just vent and complain, but with the intent to share issues of your care and to help educate in any way you can. Remember, if we just bad mouth them, we could potentially not be welcome at all. I had a phone call once from a local doctor who saw a negative Facebook post by a frustrated patient that included the doctor’s and the hospital’s names. The call was to ask me to take down the post, because the hospital staff were reading it and were really upset. The doctor told me we had to be careful how we dealt with this or people would reject taking us at all!

6) Write your congressman and share why being admitted to a hospital in their district is dangerous for you. If we don’t speak out, it continues and we suffer.

Unfortunately, we walk a fine line. We need to share these horror stories, but we have to be cautious how we do this. We want changes to happen, but we don’t want to turn people off by being so aggressive and so angry that they turn away from helping us or others like us in the future.

Education is constantly the theme; teach others what your condition is like, offer to speak out, and even consider a letter to the editor to share your concerns. But again, remember to think how you express these words. When somebody approaches you feeling extremely angry, you feel that vibration and want to back up. The medical team will feel this way too.

We have to be bigger people and put our anger aside to explain what it's like to be in our situation.

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.

My Life as a Teen with Chronic Pain

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.

STACY DEPEW ELLIS

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.

Does Chronic Pain Define Us?

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.”

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.

#PatientsNotAddicts Campaign Launched on Twitter

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."

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.

If I Had Cancer

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.

VIKKI TOWSEY

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. 

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.

Miss Understood: How Arthritis Has Changed Me

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.

ARLENE GRAU

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.

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.

CDC Guideline: A Good Start that Needs Improvement

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.

CDC Needs to Obey the Law

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.

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: How to Boost Your Mental Health

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. 

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.

Why I’m Afraid to Go to My Pain Clinic

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.

STACI DANGERFIELD

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. 

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: Accepting Help is Not a Weakness

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.

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 Danger of Treating ER Patients as Drug Seekers

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.

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.

My Life with CRPS

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.

chrystal weaver

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. 

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.