Pain Companion: The Stories We Tell Ourselves

By Sarah Anne Shockley, Columnist

Coming to grips with the fact that we’re living in chronic pain can be incredibly challenging and distressing. To help us get through, we tell ourselves stories – reasons, excuses and rationales – to cope with and explain a difficult situation.

That isn’t necessarily a bad thing. But sometimes we get stuck in a particular story which may impede us from getting to the next step or level in healing. Getting stuck in a story can make us think there isn’t really a next anything.

I’ll describe a few of the common stories, not to make anyone feel bad, but to remind us  that there are a variety of ways we can hold our situation in our minds and our emotions, and that some stories may be more useful than others. By knowing there are different perspectives, maybe we will be less apt to get stuck in any one of them.

It’s Only a Flesh Wound

This is often the first story we tell ourselves, sometimes even when we’re in pretty dire straits. It’s extremely hard to accept a severe illness or injury as a reality, and we may feel that if we let that truth in, it’s letting the pain win.

But we can’t stay in denial forever if we want to move on in life. We have to face our situation head on, even if it means accepting the fact that moving forward means we are moving forward with pain for a time. Maybe a long time.

Keep My Seat, I’ll Be Right Back

This is another flavor of denial that we often adopt once we’ve accepted that we’re dealing with more than a flesh wound. We tell ourselves that it may look bad, but it will be over soon. Not a terrible thing to believe, if it helps us get through the day.

On the other hand, if we sit in this story overly long, we may be avoiding some things we really need to deal with: That life has changed, that we need to make some accommodations, and that we may have to look at how pain is affecting our work life and relationships.

We may also be ignoring medical or alternative approaches that could really help us. We’re choosing the story that we’re not going to be doing this for long, so why initiate a long-term pain management protocol?

The Answer is Just Around the Corner

This story is about the belief that there is one miracle cure to find and then everything will be all right. There may be, but when we tell ourselves this tale, we could be missing out on all the little, but important things we can do right now to increase our well-being: like resting, drinking a lot of water, eating healthfully, laughing more, staying as stress free as possible, and staying connected with friends.

There is No Answer

This is the story we tell ourselves when we’re discouraged. When we don’t find an answer after months and years of searching, we might decide that there really isn’t any answer at all for us, and that we are lost in our pain forever.

We might then conclude that we just have to live with the pain in a state of resignation. We lose hope and stop moving toward answers and start to dig in for the long haul.

Pain is Bigger than Me

Another common tale is that pain is bigger than we are. It is so all encompassing, so demanding, and so ever-present that it can begin to feel like it has taken over our whole world.

Yes, it may be everywhere we go right now, but it is not the totality of who we are. Pain is an unpleasant experience we’re having, but it is within our experience of life, and it is not all of life or all of us. We need to be careful not to confuse ourselves with our pain, and to remember to find ways to experience pleasures and joys alongside of it wherever we can.

Sometimes the stories we tell ourselves are the only way to get up in the morning or to make it through the day. But sometimes the story is what’s keeping us stuck. I guess the question to ask is, how is my pain story serving me? Is there something I can change in it that will lead to a greater sense of hope, well-being and renewal? Then we can choose to create a different tale to tell ourselves.

Maybe it becomes the story of how healing isn’t some unknown point in the future, dependent upon one right answer, but what we do every day. It becomes the story of finding ourselves again when we thought we were lost, and the story of allowing our healing to take the time it needs while maintaining a balance between acceptance of our current limitations and positive action toward a less painful future.

It becomes a story that focuses more on where we’re headed than what’s wrong right now. And it’s a story we’re free to modify, enlarge or swap out for a new one as soon as it becomes outdated or restrictive.  

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

 Sarah also writes for her blog, The Pain Companion.

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.

A Pained Life: Swim at Your Own Risk

By Carol Levy, Columnist

I swim at my local YMCA. A new pool just opened and there are no flags or indicators showing when a swimmer is close to the end of the pool.

I can only do a backstroke. Not knowing where the wall is can be dangerous. I had already hit my head once miscalculating where I thought the wall was.

“I wish they had something as a warning that we are close to the wall,” I said to Jennifer, one of the lifeguards.

“Well, don't swim on your back. Then you can see it yourself,” she replied.

“I would love to, but because of my neck situation I can't swim on my stomach,” I explained.

Jennifer responded strangely: “Wah, wah, wah.”

I looked at her in surprise. Usually she is sweet and kind.

“My neck is held together with 12 pins and 2 clamps,” I told her. “I can't swim on my stomach. The posture and head movements for breathing are impossible for me.”

“Wah, wah, wah.”

“Jennifer, my entire neck is held together with metal. That's all that holds it up,” I said, starting to feel angry and frustrated.

“Wah wah wah. Wait! What if you used a snorkel?”

Her suggestion ignored what I had said about why I couldn't swim on my stomach.

There is another reason I can’t use a snorkel: I have a phantom touch-induced discomfort in my face. But that was more then I wanted to explain. And the explanation would require more explanation to explain what I was trying to explain.

On the other hand, my facial paralysis is very visible. The left eyelid is almost always swollen. As soon as someone sees me they know something is wrong.

“I can't keep my head in the water,” I said. “My eye doctor told me I shouldn't even be in the pool.”

Jennifer's response was quick and easy: “Oh I'm sorry. I didn't realize. That definitely would be a bad idea.”

I was flabbergasted. She dismissed my neck issues even after I explained the situation. But I was astounded by how quickly she capitulated when I said my eye is the problem.

Oh, I get it. The eye she can see. It is not something she needs to understand. All that matters is that it is visible and obvious. My neck, on the other hand, is not.

The conversation with Jennifer was the perfect embodiment of the visibility/invisibility issue we all face. At what point do we decide it is not worth the explanation, the struggle to let ourselves and our truth be heard?

Too often I feel like my integrity is being questioned by two people.

The first person is the one who refuses to listen and accept.

The second person is me, because I am too often forced to lie.

I don't want to lie. I don't like to lie. I like to think my word is my bond. But, sometimes it is just easier to break that bond with yourself then struggle to explain and be heard.

Add one more pain to the list.

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.

Why I Prefer Kratom Over Pharmaceutical Drugs

By William Johnson, Guest columnist

I've experienced much of what's wrong with our healthcare system and can think of only one possible solution people can do for themselves when it comes to pain management, which leads to another matter as well.

Kratom works well for pain and you don't need a prescription to buy this centuries old remedy from Southeast Asia. Did I say buy? Yes I did, which leads to the other matter. The Drug Enforcement Administration is currently in the process of classifying the leaf from this tree into a Schedule I drug, meaning no one will be able to prescribe it, much less buy it inside the United States.

At this very moment, thousands are telling and retelling their stories about kratom, trying to save it from the axe of the DEA; how it saved their lives or helped them stop taking pharmaceutical drugs that have horrible side effects, such as Xanax, OxyContin, Klonopin, Paxil and many others.

I was unaware of this plant until three months ago, when I first began taking kratom. I was fed up with pain clinics, tired of being treated like a criminal, and tired of waiting for hours each month just to have a prescription renewed.

I was also tired of the adverse side effects from long term opiate use. Those include, but are not limited to, depression, lack of motivation, liver damage, and severe constipation. Sound familiar to anyone?

I've made some other discoveries along the way as well. My recent annual blood work to test liver function returned to normal for the first time in over a decade, after I contracted Hepatitis C at a dentist’s office.

william johnson

Not only that, while it relieved most of my pain from several conditions of the spine, ones I was told would require long term opiate use for the rest of my life, it also adequately treated the symptoms of Hepatitis C, like chronic fatigue, joint pain and a host of others common to those with this virus.

My doctor was amazed when he found out I was consuming kratom, a botanical he'd never heard of. He began to research it and concluded the same thing as I. Kratom is the most likely cause that my liver functions are normal. He's never seen this with any patient with such a high viral load, not to mention the Hepatitis-C, which also managed to give me stage three Cirrhosis.

Unheard of, you say? Needs more study, right?

Every kratom researcher to date has recommended more study on its potential benefits, but now the DEA comes along saying kratom presents an imminent danger to public health -- even though it cannot identify a single death associated with kratom use alone.

One of the points I'm hoping to make is that there are viable alternatives for pain sufferers that don't include dealing with the healthcare system. And because more patients are learning about kratom, costing the industry million upon millions of dollars, DEA has stepped in to ban kratom for its pharmaceutical buddies, using outright false information in the process.

For more on that, click here to see a letter to the DEA from the Center for Regulatory Effectiveness.

And if you haven’t already, sign the petition to the White House opposing the DEA action.

While we're not going to fix the influence money has on the healthcare industry in a day, a week or even years, one thing we can do is remove as much of our business from that industry as possible. If herbal remedies work as well or better, I strongly suggest we work to keep them legal. Western medicine doesn't have all the answers and it might serve the public interests if we begin to realize this.

William Johnson lives in Virginia. He is a retired urban planner, who advocates for organic farming and gardening.

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.

‘Hope Is True’ Primed to be Pain Community Anthem

By Barby Ingle, Columnist

Even the tiniest spark of hope can get someone through the toughest moments in life – whether the challenges are physical, emotional or spiritual. Sometimes, all it takes is a song to help us feel better about ourselves.

Chronic pain affects one in seven globally, so it’s bound to affect you or someone you know. We need a way to have the voice of pain patients be heard so society will better understand our challenges and provide better support. That’s why the International Pain Foundation (iPain) developed the Music Moves Awareness project.

This month we released a new song and music video to shed some light on the daily challenges faced by the pain community. “Hope Is True” was created in collaboration with some of the brightest talent in the entertainment industry, including Ryan Young, William J. Fuller, The Silhouettes, Lynne Waggoner-Patton, Who is Emileigh Productions, Alex Geringas and Intellectric Media.

All funds raised from iTunes and other outlets through sales of “Hope Is True” will benefit iPain programs and the pain community. iPain is dedicated to shining a light on chronic pain, funding research and helping patients get better access to pain care. As we move forward, iPain will be using music -- particularly this new song -- to educate the world about chronic pain issues and their social, cognitive, physical, emotional, and developmental impact.

The International Pain Foundation recently celebrated its tenth anniversary and the Music Moves Awareness program by hosting a premiere party for “Hope Is True” in downtown Los Angeles. Celebrities who came out in support included Christina Milian, Ally Hilfiger, Rachel Reenstra, After Romeo, Bret Lockett, Chris Caldovino, Gillian Larson, Billy Blanks Jr., Dre Davis, and many others.

It’s all about raising awareness. We have celebrities come to events like this to tweet about it and talk about it -- and then we turn the spotlight on patients and share their stories.

The Music Moves Awareness project is centered on empowering chronic pain patients to live the very best lives they can. We believe music has the power to make lives better and inspire those living with chronic pain to become engaged by being their own best advocate.

All of our educational events are free for the patients to attend. My dad started the foundation because it took three years to get a proper diagnosis for me. We figured if it happened to me, it’s probably happened to other people.

What started as a family project turned into a non-profit foundation. We’ve done pain expos, symposiums, and currently have a webinar series as a part of the Music Moves Awareness initiative. We also get the word out by distributing printed materials and recently launched our new magazine, iPain Living.

iPain supports the idea that chronic pain is a real and complex disease that exists either by itself or can be linked with other medical conditions. As a charity, we campaign for effective pain care through an array of treatment options, many of which are widely inaccessible. Chronic pain is an unrecognized public health crisis with devastating personal and economic impacts. Most importantly, we operate under the belief that allowing people to suffer with unmanaged pain is immoral and unethical.

Over the next 18 months, we’ll be releasing features about chronic pain patients, sharing their stories and putting the spotlight on them. Each patient has a different pain condition, different treatment options that they’re pursuing, and things that are going on in their lives. 

This will help the world learn more about chronic pain and give us all new hope. 

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 on her website.

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

Waiting for Santa in the ER

By Emily Ullrich, Columnist

Some of you may have noticed I’ve been silent for a while. I’ve been shirking my duties to the pain community because I am so fed up that it all seems futile.

I’ve been struggling with feelings of defeat and guilt at my unusual inability to muster the courage to continue. I have been deeply introspective and, for once, I’ve had no words for the profound emotional disenchantment that one experiences when they realize that most doctors really don’t care.

My mother tells the following story about me when I was a little girl, and it struck me that this feeling I have today is the same one I had when I realized there was no Santa Claus.

She says that I essentially disassembled the entire house of cards that kids are brought up believing in. She says I was lying in bed when I asked her if Santa was real. She attempted an explanation that Santa was the spirit of Christmas and that he wasn’t an actual person, but that his essence was within all of us. According to her, I went on to ask if there was an Easter bunny, a tooth fairy, or even a God.

A few years later, I left the sheltered life of Montessori school, where creativity was valued, analytical thinking promoted, and social interactions remained innocent. I entered public school in the midst of puberty. Despite my many futile attempts at preppy mall fashion, and rehearsed and repetitive social coolness, I could not blend in.

To my dismay, my quirky, outside-of-the-box thinking betrayed me daily. I became the weird, socially awkward, politically and culturally over-saturated smart girl, wearing the body of a 6-foot tall woman.  As a writer, these experiences have given me a unique lens through which to view life and are now the things I pride myself in.

As a chronically ill patient, I have been thrown right back into the post-traumatic stress of that time, my intellect and strong personality are not seen as behaviors of a good patient. I feel l have to be a fake to get the care that I need. I feel this sensation washing over me every time I have a doctor’s appointment, surgery, procedure or hospital stay.

I’ve written before about the inhumanity and cold, cruel treatment I have received more times than I care to remember. I am aware that there are doctors and nurses who do care and actually want to help, and I have been blessed more than a few times with having these amazing people as my caregivers.

But if I am truly honest, more often than not, these gems of humanity are not the ones we patients get.

I understand that they’re at work, doing a job, and they have to do more for us than the usual patient. Some are also jaded, uninformed, insensitive and, frankly, shouldn’t be in this line of work.

When a patient’s life, health, and attitude are psychologically and sometimes physically neglected, disrespected, and infused with negativity, it’s scarring. It plays over and over in your head. Although it’s really hard to control my temper and emotions in this situation, I do my best. It’s not natural for me. I am opinionated and strong-willed.

I’ve learned the hard way that when I act how I feel like acting, my care gets even worse. I always wonder what I could have or should have done differently to make the situation better.

I know that I am probably coming across as very negative, but there is one thing that I know about myself -- when I am at my worst, I am often at my best. What I mean is, I want to make others around me comfortable, and the more serious a situation is, the more I try to bring levity and positivity. I try to make people feel at ease, to laugh, and to know that I am grateful for their help. I make a point of being very polite to my caregivers, even when I’m frustrated with them, and I make a point to ask how their day is, even if they haven’t asked about mine. This leads me to my most recent hospital stay.

My Latest Trip to the ER

I went to the emergency room because my home healthcare nurse demanded it after noticing that my arm with a PICC catheter line was very red and inflamed. As usual, the ER doctor treated me like I was there for fun. Because waiting for 6 hours in a room full of sick people and being treated like crap is everybody's idea of a good time!

It turned out that I had pulmonary embolisms -- blood clots in my lungs -- a life-threatening condition which frequently causes stroke or heart attack. The doctor scolded me that I should "take this seriously," as though I got the clots from doing some sort of illicit behavior and was obviously careless about my health. I wonder if it ever occurred to him that maybe I was taking it seriously -- by going to the damned ER!

He then launched into a lecture about the evils of pain medications, and even alluded to the doctor’s oath to "first do no harm," insinuating that the doctor who prescribed my pain medicines (who happens to be the kindest, most compassionate and knowledgeable doctor I’ve ever had) was not helping me, but harming me.

He assessed all of this in two minutes of talking at me, not to me, and without any idea of the myriad health conditions I live with. Sick, and even sicker of dealing with this re-run of the C+ med student-come-doctor with a God complex, I mustered the energy to stand up for myself. I argued that this was probably not the best time for a discussion about changing or completely discontinuing my medications, seeing as I had pulmonary embolisms to worry about, and a pain doctor whose specialty it is to deal with that was not present.

God forbid, I had challenged his almighty ER doctor knowledge and here's where it got good.

He decided to un-diagnose my Reflex Sympathetic Dystrophy (RSD) -- an extremely painful and complicated condition I was finally diagnosed with after two years of surgery, doctors’ visits, and being told there was nothing wrong with me that a knee joint replacement and antidepressants wouldn’t fix.  

Then I spent three days in a hospital being run through a battery of tests and a whole team of doctors had agreed on my diagnosis of RSD.  It’s an illness that I take medications for, have physical therapy for, use a cane for, and which you can tell I have just by looking at my knee -- which he never did.

"You don't have RSD," he said. Based on what? Maybe the fact that I wasn't screaming and writhing in pain, as he thought I should be?  

"Did a neurologist diagnose you?" he asked. I explained that I spent days in the hospital having a battery of tests and a number of different specialists all agreed that I have RSD. Again, he asserted his disbelief, without ever looking at my knee!

Begrudgingly, he admitted me to the hospital, as though I intentionally manifested blood clots in my lungs just so I could hang out with his charming self. He also lectured me further about the gravity with which I should treat this situation.

I wonder since if he has ever thought about this interaction with me, and in any small way realized the hypocritical irony that his entire discussion was loaded with.  

I can't stop thinking about what happened. Or where Santa went to.

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis,  Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, anxiety, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the International 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.

Don’t Let the Media and Medical Profession Fool You

By Richard Oberg, MD, Guest Columnist

Chronic pain patients, like my wife, myself and others with abominable mistreatment, continue to lose the care they need while nothing is being done to address the real issues.

Drug abuse is up, young people are dying and the main culprits aren't prescription drugs, but something much more difficult to control. Heroin and illicit fentanyl, major causes of the increasing deaths, are becoming more widely available and, unfortunately, both of them are opioids.

The media routinely spouts about these “opioid deaths” while implying that prescription pain medication is what caused healthy people to take these illegal drugs. Why? Because they say so, that's why.

As with the recent 60 Minutes nonsense, they embellish the death of some high school quarterback, have a room full of grieving parents who say they had no idea their kids were drug addicts, add the fear that this can happen to you, and we the patients get to bear the brunt of this misdirected insanity.

The CDC addictionologist lobby and other federal agencies seem to have hoodwinked everyone into blaming chronic pain patients for this national problem. This is obvious and evident from countless stories of patient abuse no one seems to want to hear. The word is “scapegoat” and not a single person in power is responsible for anything – only we the patients are.

The CDC, government agencies and, quite frankly, the majority of physicians are NOT well-intended on this issue. They created this patient crisis that could have been avoided.

Don't let the medical profession that I was a part of for nearly four decades fool you. Physician sub-specialty organizations now exist for the benefit of physicians, not patients, and are mostly about maintaining control and money. Had these organizations stood up to defend patients against the CDC, and the ridiculous addictionology cohort of psychiatrists and anesthesiologists grooming their financial turf, we wouldn't be here right now. But they didn't, and a majority of physicians say they actually support the guidelines.

Don't buy the “they made me do it” line. It is misdirected nonsense, just as eliminating the pain scale to prevent any accountability is. Physicians don’t like accountability.

Inevitably, doctors still willing to write prescriptions for pain meds will attract greater numbers of chronic pain patients – and become easy prey for the DEA or their physician colleagues who don’t approve. Some of these doctors will become outliers in medical associations whose members tell them to stop because they don’t want to see or treat patients like us.

Why doesn't anyone ask where all the patients of physician practices that are being shut down go to? It's because no one in power cares, that's why. And then there’s the sheer ignorance or bigotry of many physicians who profess to be “pain management experts.”

The American Medical Association (AMA) once represented 75% of all licensed physicians and supported the best care for patients. 

Today, membership in the AMA has declined to just 15-20% of physicians, as subspecialty organizations gained power and patient care became driven by those isolated subspecialties. 

These organizations support the flow of wealth to their specialties better than the AMA ever could.  With increasing specialization, patient care became highly fragmented for those with complex diseases, yet there was no attempt or incentive to coordinate care. It became every patient for himself.

It is extremely rare to non-existent for a physician specialist to actually speak to another physician about your care, nor is much if any time spent reading another doctor’s evaluations. It’s just not fiscally expedient with current healthcare models. That is why you’re “re-evaluated” by every new specialist you see and have to reprove your illness over and over, often to skeptical stares.

The major problem with this is that subspecialties often “evaluate” you beyond their competence. For example, a rheumatologist is vastly superior to a psychiatrist if you have an autoimmune disease, but if you’re depressed and miserable because of an undiagnosed autoimmune disease and enter the care of a psychiatrist, the odds of ever getting an appropriate diagnosis are nil. Worse, they can make your life hell.

It’s just not what they do -- they make you fit their model – not the other way around. Whenever you get into the care of some subspecialist unlikely to have any idea what’s wrong with you, it inevitably leads to biases against you because physicians are just as bigoted about what they don’t understand as anyone else.

The attitude of most that my wife and I have encountered (despite both of us being physicians) suggests that most subspecialists get their information from the nightly news rather than medical journals outside of their specialty. Neurosurgeons think opioids are bad because that’s what they’ve heard. And they’d rather believe that than have you tell them otherwise.

From our point of view, it’s would almost be comical if it wasn't so infuriating.

Often, chronic pain patients are not sick enough to warrant hospital care (following acute care protocols), yet are too ill to be seen by outpatient physicians who aren’t reimbursed enough to spend additional time figuring you out or interacting with your other physicians.

And there are plenty of “well patient” visits providing better income – so why bother?

If this sounds bad, it’s because it is. For those who like their anesthesiologist pain care person, good for you. Many of us aren’t so fortunate. And someday you might not be either.

I’m not sure how much worse this will get, with patients losing access to opioids or seeing their doses cut, while overdose death rates continue to rise -- refuting CDC wisdom. Taking meds from chronic pain patients isn’t going to fix a problem caused by healthy people with illegal intentions.

Maybe some powerful mainstream media source will actually ask someone in power what's going on and not settle for anything other than a straight answer. But I wouldn’t hold my breath.

Take the unfortunate demise of Prince and how it has been reported. Whenever someone with career-induced injuries attempts to defeat aging by taking illicit opioid pain medication to continue performing 20 year old moves on a 57-year old body, bad things will result. It shouldn’t be rocket science to figure that out, yet I don’t recall a single media source saying that.

Instead, Prince has become another idiotic reason legitimate patients shouldn’t get opioid pain care – all because he intentionally misused it to extend his career. Because of the actions of a few, the vast majority will suffer. Not exactly stellar for the most expensive healthcare system in the world, is it?

Richard Oberg, MD, is disabled by psoriatic arthritis and no longer practices medicine. Dr. Oberg receives no funding from pharmaceutical companies. 

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.

Miss Understood: A Mother’s Greatest Fear

By Arlene Grau, Columnist

As a mother your main goals are to raise your children to lead happy lives, to always love them, and to keep them safe. I want to see my children excel and get a lot further in life than anything I've ever dreamed of.

Although I have many hopes and aspirations for my two daughters, my worst fear is always lingering in the back of my head.

What if I cursed one of my daughters with a genetic predisposition for an autoimmune disease? What if they develop arthritis or lupus? I could never forgive myself if I knew they were meant to endure the suffering I've lived through.

I would give anything if they would never have to worry about seeing a medical specialist, or needing infusions, blood draws and painkillers just to get by. They already see a pain sufferer’s life through a child’s point of view and that alone is very difficult to handle for a 5 and 9-year old. But burdening them with this lifestyle would be cruel in and of itself.

I'd like to think that I could handle any amount of pain you throw at me. I'll shed some tears and break down a bit, but I think of myself as a genuinely strong individual. However, if you involve my children, then all bets are off and I become vulnerable.

When my oldest daughter was born I suffered from preeclampsia (high blood pressure) and she was born prematurely. She weighed just 4.6 lbs. at birth and was in the neonatal intensive care unit for two weeks.

The day after I was discharged, I was back at her bedside from the time visiting hours began until it was time to go home. She ended up needing surgery at 8 weeks and it was the worst experience I've ever been through.

I can remember how much I wanted both my girls to come home from the hospital with me so I can just love and protect them. My desire for children was always about how much I wanted a family, but I never stopped to think about the possibility of passing down an autoimmune  disease. Now anytime my kids tell me their back or hands hurt, I subconsciously think that it might be arthritis.

I think I may always feel that way. Not only because I'm blaming myself for any pain they may be feeling, but because I know that these diseases do not discriminate against any age group.

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.

Make the Life that You Want

By Barby Ingle, Columnist

Lately I have been living my dreams, but at the same time realizing how much I have gone through over the years, especially the last two.

Before I got sick I was active, a go-getter, never quit and efficient. Nowadays, I am still as active as I can be, still setting goals and working towards accomplishing them, and trying to keep a positive attitude. But I am not efficient anymore. It’s a large change.

I find that many people who develop an autoimmune condition were overachievers prior to their illness. Did we run ourselves down? Did something in our past prevent us from healing? Or did we just draw the short straw of life?

At this point it doesn’t really matter to me. A life with chronic pain management is my reality. I didn’t do it so well in the beginning and looked for others to fix me. I didn’t take responsibility for creating my own oasis. It was too much just trying to get to the doctor’s office for appointments when not being able to drive.

It took a lot of years, but I got reorganized and also gave myself permission to not be perfect. I came to understand that I will be managing my chronic diseases until I pass away. I can still accomplish many things; it is just going to take me longer.

I was living my dream and it turned into a nightmare. Sound familiar? I began a battle of life and death literally and mentally. 

For those reading that are not familiar with my story, I have been battling chronic pain since 1997, first with endometriosis -- which resulted in a full hysterectomy and left oophorectomy.

Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), a progressive neuro-autoimmune condition that affects multiple systems in the body. Then came temporomandibular joint syndrome (TMJ), hypothyroidism, hypoglycemia, arthritis, gastroparesis and ischemia -- not to forget a loss of balance and coordination that seems to lead to falls and bone breaks. Because my immune system is weakened, if anyone around me is sick, I will soon be as well.  

I lost my physical abilities and was bed bound for years. I spent many years using a wheelchair just to get out of bed and leave the house. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. I know firsthand how hard it is to continue looking for relief and answers; and then coming up against healthcare professionals who blow you off or do not believe what you are telling them.

I have learned the hard way that the healthcare system is not always what we are led to believe. I think that from childhood, we should be taught prevention, health responsibilities and health rights. With 1 in 3 Americans living with at least one disease that causes chronic pain, these are important life lessons. 

People look up to their doctors and put total faith in them. But it is important to remember that doctors study a particular practice of medicine. Just because they are a neurologist doesn’t mean they can treat diabetic neuropathy, multiple sclerosis, Lyme disease, or RSD. Each doctor gets a small variety of a medical field and finds a specialty that they love and work on with research and education.

Knowing this will help you get better healthcare. Don’t be afraid to ask questions about your doctor’s education and background. What is their specialty?

I know that there are far too many pain patients who experience something similar to my story. Although each of us is unique and living with our own variations of a chronic disease, having a shared knowledge of overcoming the challenges that we face can be helpful and encouraging.

I had to learn the hard way -- and now share my story to give hope and answers to patients, caregivers and healthcare professionals. I hope by speaking out about my journey it prevents it from happening to others. I enjoy hearing other patient’s stories as well, because it helps me see that I am not alone.

I have had many twists and turns through the medical system, and now encourage the importance of  positive thinking, standing up for ourselves, and improving our knowledge even in the worst of times. Let’s get back to dreaming about big, positive and happy lives.

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 on her website.

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

A Pained Life: Pennsylvania’s Opioid Law Ignores Us

By Carol Levy, Columnist

Recently I received an email update from my state senator. He wanted to let me know about  efforts in the Pennsylvania legislature to address the "opiate crisis.”

I have written before that I believe some of what has been proposed throughout the country makes sense, a prescription monitoring database, for instance. Much of what is being considered in Pennsylvania also makes sense to me:

• Labels on opioid prescription bottles warning of their addictive nature
• Written consent from parents in order for their children to receive prescription opioids
• A safe opioid prescribing curriculum in Pennsylvania’s medical schools to better educate future doctors about proper opioid prescribing practices
• Insurance plans to provide access and share the cost of abuse-deterrent opioids
• Mandatory reporting of all heroin and opioid overdoses where naloxone was administered
• Implementation of opioid prescribing guidelines developed by a state task force
• Healthcare providers to discuss the risks of opioid addiction and overdose with patients and to receive written consent from a patient before prescribing them

But there are two provisions of the law I find very concerning, one being a requirement that coroners and medical examiners report the death of any person resulting from a drug overdose.

One of the issues surrounding the reporting of deaths arising from opioids is that other medical conditions, such as the use of alcohol or illegal drugs, are often ignored and the death is counted as an opioid overdose.

That is not only poor research, but gives a false picture of what is the effectual cause of the death. Ignoring those other factors means ignoring other issues that the law needs to be addressing.

The second issue I have with the law is alarming: limiting the prescription of opioids to seven days. This ignores chronic pain sufferers and the long-term need for opioid medication, which is often our only or last available treatment.

The change we saw, in many states, was requiring a visit to the doctor for a new prescription every 6 months to needing one every 3 months. That was bad enough.  I recall needing to go only once a year, but that was in the 1970's and 80's.

If you have trouble moving, tolerating the weather or other issues, being forced to go see the doctor every three months is an issue. In addition, co-pays rise, insurance companies pay more for extra visits and may raise your rates as a result, and the cost to the state and federal government through increased Medicaid/Medicare billing soars.

I decided to research this. I found that New York State has imposed a 7-day limit on prescriptions, but the law contains exceptions for those with chronic pain or who are receiving hospice or palliative care for life threatening illnesses. Unfortunately, Pennsylvania legislators have decided to ignore those in chronic pain. The bill includes exceptions only for hospice and patients receiving palliative care.

The government has acted as doctor in many other instances; such as women's health care, declaring some drugs illegal, and allowing certain medications and procedures while denying others. I understand that. There needs to be limitations and oversight.

But this is not oversight or limitation.  This is a frenzied and illogical response to an “epidemic” that is not caused or perpetuated by those of us with chronic pain, but is nevertheless being taken out on us.

Politicians who point at us and claim they are handling the crisis are ignoring the real culprits, which is those who abuse drugs illegally.

The question has to be asked. 

How in the world does this law address the opioid epidemic, as opposed to merely blaming and punishing those with chronic pain?

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.

Freedom: A Pain Patient’s Lost and Found

By Pat Akerberg, Columnist

Chronic pain takes away many things: our health, wealth, mobility, relationships and careers, to name a few. It’s not a stretch to consider our personal freedom as another major loss. 

Freedom is defined (according to Google) as the power to act, speak, or think as one wants without hindrance or restraint. And unrelenting pain is definitely a hindrance or restraint! 

Despite that harsh reality, there’s an implication that we still have some freedom of choice in how we react. But on those really bad days when it’s all a pain patient can do to get out of bed, the notions of freedom, choice, or power seem wholly non-applicable to us. 

Compared to being autonomous and independent, the setbacks or functional losses we experience threaten any determination or self rule we have left.  You would think that more than ever we’d err on the side of self care and triage. 

Instead, we can be unduly hard on ourselves.  Why?  We still desire to be productive in some way yet can’t be, causing guilt, frustration and even doubts about our purpose.

Even the NFL knows enough to sideline their injured players to PUP (physically unable to perform) status without shame or recrimination until they can function better.

To be kinder to ourselves, there’s an important freedom we can exercise.  We hold the power to choose how we look at freedom altogether. A more lenient twist would be to view it through the lens of the medically compromised.

That twist of perception provides us with 2 types of modified freedom.  One of them involves those things we are now “free from” and can do less of.  The other involves those that we are now “free to” do more of.   

Here are a few freedoms from certain things I have come to appreciate in my particular form of captivity with trigeminal neuralgia:

Type 1: Freedom From

• Attending obligatory, unappealing outings
• Taking all phone calls (talking is a huge pain trigger)
• Trying everything suggested as my cure-in-waiting
• Superficial small talk
• Grocery shopping, laundry, heavy cleaning or distance driving
• Strenuous physical exercise
• People who choose to judge my misfortune as an inferiority and their good fortune as superiority
• Unfulfilling, needy relationships
• Noisy, crowded places and boisterous people
• Educating people about my rare neurological condition, pain, etc.
• Being the initiator, mediator or helper at large

Here are some of my freedoms to. They’re permissions that I grant to myself:

Type 2: Freedom to

• Say no to outings, places, and activities that exact a painful price physically
• Avoid invasive treatments and lab rat experiments
• Express my views about the injustices surrounding inadequate pain care
• Avoid anything that demands my energy after 4 pm
• Not judge myself because mindfulness meditation, exercise, and other touted pain management strategies fell short for me
• Ask for what I need and want when help is offered
• Receive gratefully without guilt or the pressure to reciprocate if I can’t
• Cancel appointments/plans if I am unable to keep them
• Stay in my pajamas if I’m unable to do otherwise
• Practice comforting self-care: baths, massage, good books, TV binging, adult coloring books, sending note cards, and an occasional indulgent dessert
• Make an effort to look my best occasionally, even if it will work against me

It’s helpful to add to and review my list during my worst times to remind myself what freedoms I’m not missing or can give myself. 

Hopefully you’ll consider your particular Type 1 and Type 2 freedoms too and share some with us.  When we do that with each other, it expands our viewpoints and learning. 

After all, we’re each other’s “people,” the group we belong to now. And it takes our own to honestly understand the kind of work-a-rounds that we’re forced to come up with and the life quality compromises we endure.  We know how we can isolate or shield our loved ones when we’re plagued by fears, misgivings or unsettling worries.

I am telling both a lost and a found story about my modified version of freedom now.  It acknowledges that the freedoms I’ve lost have also given way to some new found gains. It’s not meant to suggest that any of this can reduce our pain or restore our undeniable losses, but at least it helps us see the glass isn’t rendered totally empty.

Sometimes it can take a revolution of sorts to hold onto to our freedom or mitigate our losses.  Mine started with giving myself permission to revolt against standardized one-size (that don’t fit all) ways of looking at important things like freedom. 

We can choose to replace any ill fitting lens with one that accounts for the unique and complex anomalies that happen to people just like us.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

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.

Miss Understood: How I Won My Disability Case

By Arlene Grau, Columnist

Early March of this year my second hearing was set with Social Security regarding my disability claim. I had previously been denied and we appealed.

The judge wanted one of their rheumatologists to come in and read my blood tests, doctors’ notes and other medical records, because he said he couldn't decipher them.

Two weeks before our hearing date we got word that the specialist they selected was actually a kidney doctor.

My lawyer wrote the judge informing him that we wanted someone else because we felt that the doctor wasn't qualified for my case. We never heard back from the judge, but the doctor excused herself.

The day of the hearing the judge was as harsh as ever and upset because no one in his office told him about the doctor. He wanted to reschedule my hearing until they got another specialist.

But my lawyer wasn't ready to give up and I was so frustrated at that point that I begged him to let us say our peace. Reluctantly he did.

I suffer from rheumatoid arthritis, lupus and other autoimmune diseases. We were able to prove that I had missed numerous days from work due to hospitalization, surgeries or illness based on time sheets and hospital records. I also have numerous doctors’ appointments every month and had the medical records to prove it. Basically everything the judge had a question for, we had supporting documentation.

I had walked in thinking the judge was going to deny me again, because he had stated that rheumatoid arthritis and lupus aren't disabling diseases. I had plenty to tell him about that, but he just brushed off everything we had to say.

The second time around, he was very different.

I honestly believe that prayer works. That and being prepared. Having all your bases covered and making sure you have all your paperwork squared away. I got a print up of all my doctors’ visits and built a graph of them by month and year. Then I did the same thing for my hospitalizations. I also got a print up of my work time sheets and graphed the days I missed by month and year. For some reason the judge liked the graphs more than the print ups themselves.

In the end, the judge awarded me close to three years of disability that I was owed in retro pay. I’m also now receiving Medicare. Although it took 3 years, I'm glad I didn't give up and that I had so much positive support from friends and family. My family and I are finally able to put this behind us.

Arlene Grau lives in southern California. She 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.

Why Opioid Addiction Treatment Often Fails

By Percy Menzies, Guest Columnist

The two most contagious factors linked to addiction are accessibility of the drug and price. If there is easy access to the drug (and this includes alcohol), the number of people exposed is going to increase and a higher number will become addicted.

Every single epidemic has followed this principle. Let’s look at the present problem in the U.S. with the abuse and addiction to prescription opioids.

For decades access to prescription opioids was restricted to patients in acute pain and the only exception was terminal cancer pain. We did not have a major health crisis with opioids in the 1980’s and early 1990’s. 

Then in the mid 1990’s, articles and papers started appearing in the media and medical journals about the under-treatment of chronic pain. Respected clinicians and researchers made a strong case for using opioids to treat chronic pain. They insisted that opioid medication had little or no potential for abuse.  Clinicians were expected to treat chronic pain as the “fifth vital sign” and use opioids as a first-line treatment. The access door was thrown wide open and, for most patients, insurance covered the prescription cost.

When the alarm bells sounded years later and physicians cut back on prescribing, some patients who use opioids medically and many others who use them to get "high" found an alternative: heroin.  This illegal drug was relatively easy to obtain and the price was substantially lower than prescription opioids. 

Now heroin is becoming the gateway drug.  The potency of street heroin is increasing and there are many reports of heroin being laced with the very potent opioid fentanyl to increase the high. The DEA also tells us that hundreds of thousands of counterfeit pain medications made with illicit fentanyl are on the black market.

How do we fight this? Look at how we've reduced access to alcohol and cigarettes.

Access to alcohol is restricted by age, taxes on alcoholic beverages, licensing restrictions, campaigns against drunk driving and other measures. Policies to reduce smoking have also had dramatic results. The smoking rate in the U.S. has dropped from 50% to about 19% in the last twenty years. How was this achieved? By tightening access: no cigarette vending machines, no sale of single cigarettes, limits on places where people can smoke, and substantially higher taxes on tobacco products.

Look at addiction to cocaine. Cocaine was once glamorized as a drug that was only psychologically addicting. The abuse of cocaine and later crack cocaine skyrocketed in the 1980’s. In response, very harsh and discriminatory criminal measures were instituted, but with little effect. Some groups even advocated legalization.

The government promised effective treatments for cocaine addiction, including vaccines, but to date we have neither the treatments or vaccines. Yet addiction to cocaine is way down. Why? Because of reduced access. The countries growing coca came under increased international pressure and destroyed coca crops by spraying them with herbicides.  What would have happened if cocaine was legalized?

Legalization of a drug greatly increases accessibility and increases the number of people exposed to it.  The increased legalization of marijuana has made cannabis accessible to millions of people who never would have considered using it before. There are projections of marijuana becoming a $70 billion plus product in the next 5 to 10 years!

Accessibility undermines recovery.  The conventional treatment approach is to send patients away to residential programs for weeks and months.  The thinking is that behavioral and life skills learned during “rehab” will protect patients from relapsing when they return home. Does this really happen? Can patients successfully navigate the plethora of cues and triggers greeting them when they return home?  Will they be able to resist or ignore the ringing of the bell of Pavlovian conditioning?

It is not likely to work because of a well-researched phenomenon called Conditioned Abstinence or the Deprivation Effect. When a patient is sent away and deprived of access to a drug or alcohol, the addiction goes into an internal “incubator” where it is nourished by anxiety, exchange of war stories with other patients, and ruminating about drug use.

When the patient returns home to the familiar environment of past drug use, the fortified addiction powerfully reemerges from the incubator, leading the patient into relapse.

Repeated attempts at incarceration and long-term residential treatment have failed to curb high relapse rates, especially for opioid addiction.  This led to a wrong and highly controversial conclusion that addiction is a brain disease and the only approach is palliative treatment with other opioids, often for life.

The common and inappropriate analogy is to diabetes. Rather than looking at access as the contributing factor to relapse, patients are told they need opioids like methadone and buprenorphine to ease their withdrawal pains, much like diabetic patient needs insulin.  A clever but unproven theory called the “metabolic syndrome” was put forward to explain this. Patients are left feeling hopeless, helpless and resigned to their fate.

We need look no further than the U.S. soldiers that got addicted to heroin in Vietnam to debunk this theory. The addiction of some soldiers was spawned by cheap and easy access to heroin in villages and hamlets. Our country was in a state of panic about these soldiers continuing their heroin use when they returned home. There was even fear that their weapons training would be used to obtain the drug.

To everyone’s surprise, less than five percent of the soldiers continued using heroin when they returned home. Did these soldiers not suffer from the metabolic syndrome?  They did not continue their heroin habit because they had no easy access to heroin when they came back. If they had been sent back to Vietnam, many would have relapsed because they would have easy access again to heroin.

Compare this to the soldiers returning from Iraq and Afghanistan. Many have been able to continue the addiction because they have easy access to opioids and heroin in the U.S.

Palliation or substitution with methadone or buprenorphine has done little to blunt the heroin epidemic. We have not found a way to reduce access and indeed it is growing. A record quantity of potent heroin is flowing into this country from Mexico. The other two major producer countries, Afghanistan and Burma, are politically unstable and their poppy acreage has grown at alarming rates. It is only a matter of time before the heroin from these countries will start trickling in.

There are no easy answers. Unlike cocaine, products made from the opium poppy are essential for the treatment of pain. There is little we can do to reduce access to heroin. We need to seriously relook at the present treatment infrastructure. Addiction treatment often is episodic, non-medical, punitive, expensive and ineffective. Few patients are sent home on medications like naltrexone to protect them from relapsing in the first days and weeks after rehab. Medications like naltrexone and Vivitrol that give patient a fighting chance of long-term recovery are rarely used.  

We are woefully unprepared to deal with the present situation and the bigger problems to come. One thing is certain: legalization of heroin is not the answer. Decriminalization and standardized treatment with non-opioid drugs can be.

Percy Menzies is the president of the Assisted Recovery Centers of America, a treatment center based in St Louis, Missouri. He is a passionate advocate of evidence-based medical treatment for addictive disorders.

He can be reached at: percymenzies@arcamidwest.com

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 Wife Had Ehlers-Danlos and Didn’t Know It

By John Ferman, Guest Columnist

We were married for 41 years.  You’d think after all of that time you would know everything there was to know about a person.

I knew Carol as a loving wife who would do anything she could for the kids and the family. She was a social worker and very concerned about the comfort of others. She didn’t complain and didn’t want others to worry about her.

Carol’s symptoms started shortly after we were married in 1967.  Carol was very energetic, had just graduated with a master’s degree in guidance and counseling, and was anxious to start her new career. She also was somewhat of a “perfectionist” who wanted to keep the house clean and organized, but started to develop some pains as a result.

I remember attending Lamaze classes in 1969, when she was pregnant with our first daughter. The instructor commented on how “flexible” Carol seemed to be during the exercises. Our first daughter Deborah was 4 weeks premature and the second daughter Deanna was 7 weeks premature. We joked that if she got pregnant again we would have to carry around a basket to be ready for the next one.

CAROL FERMAN

Carol’s joint pain got more severe in the 1980’s. She was the first director of a new crisis hotline in the Cleveland, Ohio area and was working unusually long hours.  With all of the mental and physical stresses she was going to a chiropractor monthly and then weekly.  She was also getting massages on a regular basis.

Initially, Carol’s neck, back and shoulders were the major issues. The doctors did not seem to understand her pain and could only recommend ointments and pain medication.  It did not seem to help. She was diagnosed with Thoracic Outlet Syndrome, TMJ and maybe fibromyalgia, but they were not sure. 

I was taking over the household tasks of cleaning, doing the dishes and the laundry.  Some family members commented that they thought Carol “looked perfectly okay” but was weak, lazy and taking advantage of my help. I knew there was a problem with her pain but I did not know what it was or what else to do to help.  

In addition, Carol had severe allergies, IBS symptoms and an extremely sensitive stomach, so she avoided certain foods, spices, and medications. Her allergies often limited where we went for social activities and even restricted purchasing certain items if they had chemical smells, dust, or cigarette odors.

She had flat feet and was prescribed orthotics. Her feet always hurt and finding comfortable shoes was challenging.  She had very sensitive hearing and was a very light sleeper. The slightest noise would wake her.  Pain and disturbed sleep meant she always woke up exhausted!

Carol would describe affected parts of her body as shifted, twisted, crooked, and her favorite word "discombobulated" (meaning everything was zig-zag and out-of-whack). Her pain was achy and throbbing, and she also had episodes of radiating pain, stabbing, pinched nerves and numbness. She would say things like, "I will hurt myself if I reach or stretch for that item, or if I bend that way or if I twist my body."

She had a lot of extra pain if she tried to carry something that was awkward or too heavy. My daughters could carry heavier items than my wife, and the kids and I did a lot of the fetching, carrying and cleaning for her. I made most of the meals and got the kids off to school.

As a result of her non-restorative sleep and pain, Carol was often in bed until the kids got off the bus from school. The girls would run upstairs to the bedroom, eager to spend some quality time with mom, as she was getting out of bed in the middle of the day. The girls remember it as a special time. Moments like these with her girls gave her some comfort and support, but the girls were sometimes embarrassed. They could not tell anyone that their mother was in bed all day.

Carol’s muscles were always tight, and she often described her pain as if "one part of her body was pulling at another.” The only exercise she could tolerate was very slow walking. She loved walking at sunset in the park.

She had pain driving a car and searched extensively to find the most comfortable car so she could remain independent. It was very stressful for her to be a passenger in a car. She would try to brace herself for the starts, stops, bumps, and turns.  If I was driving, she would request alternate routes for straighter roads. We would sometimes go 3 or 4 miles out of our way to find a smooth straight road for her to travel on.

We didn’t know at the time that these were telltale symptoms of Ehlers-Danlos Syndrome (EDS).

Carol was very discouraged that the doctors did not believe her and she stopped telling them about her pain because the tests came back “normal” and there was no treatment or even a reason for her pain. They just told her she was overly-sensitive, exaggerating, or “it’s all in your head.” 

It really bothered her that her medical records said all those bad things about her "mental state.”  She tried at times, in vain, to get the records changed. She knew that when she was depressed, it was due to fatigue, lack of sleep and pain. Not because she was making up things to be sad about.

She could only sustain working for a few more years part time, and then it got to be too much for her physically.

We continued to play out that very difficult lifestyle until Carol was diagnosed with breast cancer in 2002. The continuing pains, surgeries and chemotherapy took their toll on her and she had a major struggle with clinical depression.  She was on so many medications that they masked many of the symptoms.

Carol passed away in 2008 of breast cancer as a result of some prescribed medication, the same year my daughter Deanna was diagnosed with EDS.  In her early 20’s, Deanna developed many of the same symptoms and pain as her mom. They often talked about the similarities and offered each other comfort and understanding.

EDS is a genetic defect in collagen protein -- the “glue” that supports and holds the body together. It causes chronic pain, joint hyper-mobility (double-jointedness and fragile joints) and affects multiple other body systems. There is no fix -- no medicine or surgery -- that resolves this condition. However, it is important that EDS be diagnosed and managed, so that symptoms can be controlled and appropriate preventive measures can be taken.

If only someone had told Carol about EDS. It would have saved both mother and daughter much suffering, loneliness and judgment.  I don't have room in this article for all the details about how undiagnosed EDS harmed my wife and daughter's lives.  Just believe me when I say emphatically that if they had known about EDS, their lives would have been dramatically different!

DEANNA HAMM

Ehlers-Danlos Syndrome is not rare. It is rarely diagnosed.  It is estimated that EDS affects more than 1 in 5,000 people worldwide, but only 5% are correctly diagnosed with one of the 6 major forms of EDS.  In the United States alone, 650,000 sufferers go undiagnosed every year due to physician mistakes or lack of knowledge about the condition.

Many afflicted with EDS - and the people who care for them – don’t know where to turn for information, advice and help with issues such as treatments, therapies, practitioners and products to assist in managing the symptoms. The majority of those who are undiagnosed do not know this disorder exists and are left on their own, struggling to find a reason and a name for the pain and suffering they are experiencing. They suffer for many years and die – never knowing why they had the pain.

Tell someone about EDS today and every day. I do! You could improve a life or even save one!

John Ferman and his daughter Deanna Hamm are co–founders of EDS Awareness, a non-profit online resource for the Ehlers Danlos Syndrome community. John is a full time volunteer managing the program. Deanna is a pre-med graduate with Hypermobile EDS. She leads the Cleveland Ohio EDS Support Group.

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.

Pain Companion: How to Live Better With Nerve Pain

By Sarah Anne Shockley, Columnist

I’ve lived with severe nerve pain for the past eight years and have, through trial and error, found simple ways to help reduce and quiet it down on a daily basis. 

Some of these methods may be obvious if you already live with nerve pain. I include them all here because I know that it certainly would have served me well to have had this information early on, instead of having to work it all out for myself.

The first thing I learned was to think about my situation differently. For a long time, I thought about my nerve pain as its own thing, separate from me. It was something I didn’t want to have around, as if it was its own entity. It was me against the pain.

I’ve come to understand that my nerve pain is an aspect of my body, and possibly myself, that is so raw, so irritated, so sensitive and so volatile that it does not serve to try to make it get better.

My nerves in pain don’t want to be poked or prodded or touched or manipulated into wellness. Even alternative treatments seem like too much to handle. I am a strong believer in acupuncture, but the idea of needles when my nerves are already screaming is not something I want to contemplate. Sometimes even light massage is too much.

When I began to accept the pain as part of my whole life experience, not something that could be extracted or aimed at and annihilated, I began to see that my approach to easing it was going to have to be much more holistic.

I found the best way to do that was to work with creating more well-being in the body around the nerve pain. 

Often, I found that trying to deal directly with my nerve pain actually made it worse, but this indirect approach, over time, was much more effective in helping to ease it.

Here are some methods to help the body feel the best it can around the pain:

Relax and de-stress as much as possible. Limit interaction with things that would normally “get on your nerves,” such as stressful situations, toxic people, crowded stores, and rush hour traffic.

Stay on an anti-inflammatory diet and try to avoid inflammatory situations that activate fright, tension, or adrenaline rushes, such as argumentative people or being argumentative yourself.

Get more rest and sleep by staying calm. Make doing less a priority. You might use herbal teas, such as chamomile, to help with sleep or read yourself to sleep while listen to relaxing music. Avoid staying up late on the internet.

Choose activities that not only suit your physical limitations, but also soothe the mind and soul, such as meditation, listening to beautiful music, singing, walking in nature, talking with loved ones, and reading inspiring words.

Spend time every day in nature walking and focusing your attention on the soothing feeling of the air on the skin, the breeze, the sunlight, and the sound of birds. Bare feet on the ground or in sand can be exquisitely soothing to the nerves.

Take long soaks in bath salts or products using aromatherapy. Let your body relax into the warmth and the delicious smells.

Keep moving in any way you can that doesn’t exacerbate the pain. It’s important to keep the blood and oxygen flowing to keep your muscles from stiffening up and adding to the pain. Stagnant blood and stagnant energy do not help you heal.

Aside from helping your body feel better physically, I also recommend taking care of yourself emotionally.  Here are some pointers:

Find the little pleasures and things you enjoy and appreciate. Don’t wait for the pain to leave before you enjoy yourself and your life. Find the places that don’t hurt and revel in them. If there aren’t any, look beyond your body and find the things you can take pleasure in around you, including nature, the creative arts, the community, and your family.

Don’t try to turn your life off to avoid feeling pain. Don’t close down your ability to laugh or have fun. This is still your life. It is the only one you have. Make the most of it, even if you have to include pain in the equation. Just let it be there. Even invite it along.

Be kinder to yourself. Create a self-love routine around taking care of your body and your emotions. Wash yourself with soothing hands. Buy things that have soothing smells, not sharp chemical odors. Indulge your need for more softness and kindness in your life. Wear clothes that feel soft against your skin. Talk to yourself using soothing words. Give yourself a break more often.

Finally, consider making friends with your painful nerves. Talk to them kindly. Tell them it’s safe to calm down.  Tell them that you’re paying attention to your body and you’re doing the best you can to heal.

Let them know that you hear them, you honor them and you respect what they have to say to you through the pain. Understand that they are in alarm mode right now, but you have heard them, and it’s okay to tone it down a little. It’s okay to let their message be carried to you a little more softly, a little more quietly.

I think one of the tricks to working with nerve pain is to understand that we have one central nervous system that lives throughout the body. Even if we are feeling nerve pain mostly in the face, neck or hands, it relates to and affects the entire nervous system and therefore the entire body.

I believe we can positively affect nerve pain in any part of the body by treating the whole body with calming, soothing, relaxing, and restoring activities and approaches. I’ve found that they work.  And anything we can do to bring the pain down a notch or two is well worth it.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

 Sarah also writes for her blog, The Pain Companion.

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.

Disability Resources You May Not Know About

By Barby Ingle, Columnist

Over the past 20 years I have had many ups and downs with my health and my finances. After losing my job and company, I had to rely on food stamps, church food banks, and county mental health support groups.

While speaking with others in the support group, I found out that there are a wide variety of disability benefits that come from federal, state and private sources, such as worker’s compensation for people injured on the job and military benefits for soldiers and veterans.

We need to invest time to make sure that the resources available to us are being utilized. There are Social Security programs, Medicare, Medicaid, state assistance programs, utility company programs, handicapped bus passes and car licenses, to name some of them.

Too many of my friends either didn’t know about them or felt embarrassed to ask for assistance.

Knowing what each one is and how it can be used is important. For instance, Supplemental Security Income (SSI) comes from general tax revenues, not social security tax funds.

SSI is designed to help aged, blind, and disabled people who have little or no income. It provides cash to meet basic needs for food, clothing, and shelter. Typically, you quality if you have a medical condition that has prevented you from working or is expected to prevent you from working for at least 12 months.

Social Security Disability (SSD) comes from federal social security taxes that people pay into in case of long-term disability. You must have worked and paid Social Security taxes long enough to qualify. Depending on the state you live in, you can complete the application through the mail, over the phone, or even online.

If you receive SSD, you can quality for Medicare 24 months after becoming eligible for disability.  In my case, I became eligible for Medicare almost immediately, as it was a few years into my disability and they retroactively changed my disability date.

For others who apply sooner, you typically will receive your information several months before you are eligible to start Medicare coverage. I highly suggest that you fill out your papers immediately and return them. There are different requirements in each state for financial and disability levels. Medicaid services can included preventive care, immunization, screening, treatment, doctor visits, hospital visits, and vision and dental care.

Many states offer specific programs that can help you through daily living. It is important for chronic care patients to maintain independence to sustain their full range of experiences, rights and desires. Programs that provide training and support appropriate to the needs of each disabled person can be found in every state.

People disabled by pain may not realize at first that they are eligible for many of these services. They don’t think that their condition is debilitating enough to require handicapped parking, and underestimate the benefit of closer parking or how much energy it saves.

We should always be mindful of our energy penny bank. Handicapped permits and passes allow a disabled person to run errands, shop, go to doctor appointments, travel, and participate in other activities without wearing themselves out within the first few minutes of arriving at a destination.

If you have a disabling pain condition which may allow you to have a handicapped parking permit, talk to your doctor about it. Do not wait for your doctor to bring it up. Doctors are very busy and it is unlikely that this is foremost on their minds. Your doctor should not hesitate to sign the paperwork for you to get a handicapped parking placard if you are eligible under your state regulations.

Also be sure to get a bus pass for disabled riders. They are available in most states and typically give you free or discounted rides.

I used to take the bus often. If you find yourself in a city needing to take the bus, be sure to learn the schedule and let the bus driver know if you have any disabilities or need assistance. Ask him to remind you to get off the bus at your final destination or transfer location. I would forget my stop far too often. You learn to speak up when this happens and you miss a doctor’s appointment.

Patient transportation services are also available for some Medicaid and Worker’s Compensation patients. These companies ensure that patients are transported with the right level of medical expertise in the most appropriate vehicle, such as specialty vans that accommodate wheelchairs. Other modes of transport include ambulatory, wheelchair, stretcher, and air ambulance.

The insurance company is directly billed with a detailed invoice as to miles driven, time of transport, and drop off locations. Services are typically available every day of the year. You can set up this service with your claims adjuster or care manager. I know many who already use this service and love it. One of the iPain board members actually owns a company in Kansas and Missouri that operates this service. If you quality, ask for the help.  

No matter what resource you need, don’t hesitate to ask for them. Get the help you need to become the most active person you can be. Not treating pain is unethical and immoral. When you qualify for assistance, it means you have earned it and it is there to help you help yourself.

For a list of other free or low cost services available to you, checkout the Patient Resources section of Pain News Network. We all pray it is short term assistance, but if long term or life assistance is needed, be the best you can be and take advantage of the help that is available to you.

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 (iPain). She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found by clicking here.

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