Maddening Advice: When the Dots Don’t Connect

By Pat Akerberg, Columnist

If I didn’t have a neurological pain disorder that defies resolution, I would scream out loud in frustration.  But talking and screaming are huge pain triggers, so I avoid them. 

You might be thinking that I want to scream because of the hundreds of horrific electrical pain spikes I endure all over my skull every day.  But that’s not actually why -- uninvited and uninformed advice are what makes me want to scream!

Not a day goes by that I don’t read some comment, hear of some off-the-mark advice offered, or field some intrusive advice myself.  You know the kind. 

It’s advice that’s given as if it holds the illumination of the brightest sage on the planet; and ought to be surrounded by a glowing halo.  Forget that it doesn’t fit the whole picture – the complexity of my medical disorder, pain, history or my own experience.

Oftentimes the suggestions and advice come in the form of simplistic, sweeping generalizations, with a hint of judgment laced with a black and white attitude.  If it worked for my aunt, then it will work for you – an improbable dot.

Sometimes it even comes with a hurled platitude or two for extra measure.

My personal non-favorite is the one that implies that we’re not given more than we can handle. The implication being that we just handle it then. 

“Just” is another pesky diminishing, misguided dot.

What if the reality is that some days we can and others we can’t, hard as we try?  Sometimes the right action in response to Yoda’s, “there’s no try, only do” is to not do.  

And I marvel at the pull yourself up by your bootstraps, take charge, buck up, get happy, and do something to help yourself variety of advice. Chances are some version of that is usually offered by someone who either never has or only temporarily had to live with pain, and not of the disabling kind. It’s the kind of “tough love” pep talk more fitting for enablers to deliver to an addict. 

But we’re not addicts; nor are we malingerers. 

These one-way, one-size-fits-all approaches are not motivational, considerate, or even pertinent in most situations. 

Is it so hard to believe that there are various physical activities, like exercise, cardio, yoga, bike riding, etc.,  that are simply too demanding to bear for some people with debilitating illnesses?

Contrary to the no-pain, no-gain notion, sometimes those very activities actually thwart improvement. I can personally attest to experiencing those setbacks, causing me to regretfully cancel my Y-membership.

To some, that translates to I am not trying hard enough and don’t want wellness bad enough.  Or that I am weak, succumbing to defeat. I can’t imagine anyone thinking that a person would prefer to live an impaired life voluntarily.  If I could get back to work, I’d be out the door in a heartbeat.

What if instead I know my own body, limitations, and my history better than someone else does?  What if I’ve learned from a disastrous, damaging brain surgery how to pay keen attention to my gut instincts about potential harm?

A friend of mine calls that honing skill his “Spidey” sense.  The best part is that you don’t have to be a super hero to have it either.  I suspect a few of us have developed it the hard way.

Growth and development comes in many forms -- not always external in nature.  Though we may not be exercising or running; there’s plenty of internal growth going on in will, courage and fortitude.

It’s how we carry on. 

Then there are the obvious suggestions that test anemic up against the unrelenting pain wallops that resist much of what’s out there to abate them. 

It might surprise some advice givers to learn that serious chronic pain sufferers laugh silly at the notion that Tylenol, Advil, a good vitamin complex, bottled water (yes, I was offered that one), a certain diet, or doing _______(fill in the blank) will relieve our pain. 

You’ve probably heard others just as ill-fitting or absurd.  None of those dots that plop can stop the neuropathic pain strikes relayed through my faulty central nervous system.

Once I heard a man tell other pain sufferers that they could not have possibly tried all of the potential pain treatment options out there, that no one could in their lifetime. 

Some sufferers have researched and lived with their chronic conditions for years, have seen dozens of specialists in multiple states, had multiple surgical procedures, and/or have taken an untold morass of medications – all factors the advice giver couldn’t have known or considered.

I do realize that sometimes people, even well intentioned, just don’t know what to say to someone who is suffering endlessly. 

But there’s actually no requirement that advice or suggestions be given, is there?  Support, the kind that connects, can be conveyed in so many practical, helpful ways based on the person’s actual needs.

Often self and other awareness can go a long way during difficult circumstances. I mean the pause of “until you’ve walked a mile in my shoes” kind of other awareness.  And the restraint of “err on the side of doing no harm” self awareness if you aren’t sure.   

People in pain are often misunderstood, maligned, barely listened to, or believed.  One of the greatest gifts someone can give to a chronic pain sufferer is their supportive presence.  A caring friend or family member simply willing to listen is balm for the spirit.

In the end, self care trumps unsolicited, disconnected advice.  Apparently today that involves tuning my Spidey advice radar up yet another notch.

Along with that comes the personal responsibility to do my best not to inflict the same unwanted practice on others.

Pat Akerberg lives in Florida. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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

Pain Pacifist: A Poem About Pain

"Pain Pacifist"

By Angelika Byczkowski

Pain warrior no longer,

I surrender,

give up the fight,

become a pacifist.

Pain is far too big,

too strong for me

to stand against,

curb or contain.

It spills over

the edge of my meds,

trampling barriers

of mind eroded

by long-sustained

assault, it gives

no pause, no rest,

no redemption.

I'm worn down,

too exhausted

to continue this

unending battle,

fighting my own

invisible torment,

running wild in

this broken body.

Dreams for the future

lie shattered, love

of life destroyed,

lost to pain, and

the way ahead

looks even worse,

I change my route,

try something new.

I declare a truce,

one-sided, still

it brings me moments

of gentle calm,

when a window

opens briefly,

gives me a glimpse

of possible peace.

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome and fibromyalgia. Until she was disabled by progressive pain and fatigue, Angelika was a high tech IT maven at Apple and Yahoo. She lives in California’s Santa Cruz Mountains with her husband and various 4-legged kids.

When pain isn't keeping her flat on her back, she spends her limited energy researching and blogging about chronic pain, EDS, and fibromyalgia at EDS Info.

Pain News Network invites other readers to share their stories (and poems) with us. 

Send them to:  editor@PainNewsNetwork.org. 

Pain and Parenting

By Barby Ingle, Columnist

A little over a year ago my brother and I published a book for children who have people in their life living with chronic pain. We both live in pain and he has children.

In preparing the book we did a lot of research on the language that children understand. For instance, using the word “hurt” instead of “pain” for children under six years of age helps them better comprehend chronic pain. Saying “Aunt Barby hurts” works better than “Aunt Barby has a migraine.”

When speaking with your child about chronic pain, try to create an open dialog that is age appropriate. Children need to be reassured about what is happening, especially when the child is the patient. For school-aged children, keep their teachers and counselors involved and offer them additional counseling and resources.

Young children have very active imaginations and when left to their own thoughts can make a situation much worse. I remember a time when I was young and a friend in school passed away. I had a cold the week before and went to school anyway. The teacher explained to the class that Chris had passed away after getting sick. For years afterward I thought I made him sick and that is why he died.

School-aged children think in black and white terms, so give realistic and honest answers like: “I don’t know when Christy will get better, but we can help make it easier for her if we do this.” 

Dealing with an adolescent child is a roller coaster for many parents and chronic pain makes that roller coaster ride even scarier. Many patients who are diagnosed in their teenage or early adult years will stop or slow development mentally and emotionally unless they are guided in managing their pain properly. They need understanding, support and encouragement from others, and to be engaged in social activities as much as possible.

It is best to answer their questions honestly and treat them with the ability to understand.  Get them professional help if they are acting out or asking questions you feel will be better answered by someone qualified in chronic pain and psychology.  

A big part of parenting and interacting with younger people with pain is our own guilt about their limitations. Instead of beating ourselves up, read them a bedtime story, watch a movie, or just spend time together. You may be surprised how proud your child is of how you are handling such a difficult situation as their caregiver. 

For parents in pain, the birth of a child is a wonderful and joyful event, but it raises a whole new set of concerns. For those who develop a pain condition after their child is used to life with fewer limitations and restrictions, this can bring on even more challenges and adjustments.

Some important questions to ask yourself are what if the pain grows worse? How will my child understand? How can I still parent them appropriately? And is there a difference if it’s mom or dad in pain? 

Have an open dialogue and communication that helps your children, grandchildren, nephews and nieces understand limitations and why a family member or parent is different. Children need to know they cannot catch your pain!

Children function better with a routine and knowing how things will get done – as in how they get to school or who will make their lunch. Make plans and stay organized. Get the family involved so that they know it will all be okay if mom or dad can’t manage things that day. Children of all ages need to be reassured about what is happening and that it will all work itself out. By planning, preparing, and helping, you can make it go that much smoother for the whole family.  

The bigger part of parenting with pain is our own guilt that we are short changing them somehow because of our limitations. With my older nephews, I didn’t have as close of a relationship with them for years due to not being able to manage expectations. Once I was able to set the expectation, it helped tremendously.

Yes, we may have to do things differently and maybe a few less things, but pick what matters and make it count.

And check out "Aunt Barby’s Invisible, Endless Owie" by Tim Ingle and Barby Ingle.

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 represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Advantages of Having a Service Dog

By Ellen Lenox Smith, Columnist

I chose to apply for a service dog after meeting someone else with Ehlers Danlos syndrome (EDS) who had been given one by the National Education for Assistance Dog Services (NEADS), also known as Dogs for Deaf and Disabled Americans.

At first, I was nervous that I would not be able to handle the responsibility, afford the cost, and that I would not qualify for a service dog. But the decision to apply and later bring “Maggie” into our lives was one of the best I’ve ever made.

Six days after coming home from a two week training program, Maggie saved my life. To this day, she senses when I have my breathing cut off and alerts me.

Maggie can somehow tell in the morning that I am headed for a bad night. She will look me in the eyes, nudge against me, lick my legs and not leave me alone. She was not trained to know this, but we somehow bonded so well in the first few weeks that she can sense when my oxygen levels are too low.

At night when she senses this, Maggie wakes me -- first by pacing on the bed, then whining, and if that does not work, she licks or nudges me until I awake.

I met Maggie when I was barely able to walk. She quickly helped me learn to live life in a wheelchair.

Imagine what it is like to drop an object and not be able to get down and pick it up. Maggie will pick up whatever she finds on the ground and bring it to me. She can retrieve the phone and pick up paper, pens, and almost any size object. She can even be sound asleep and hear me drop something and come right over to get it for me.

I also find her support with balance. Although NEADS does not train dogs to wear harnesses for balance, they do help you to utilize the dog for simple tasks, like getting up safely from a chair, out of a car and even off the toilet seat.

Maggie provides amazing pain relief and comfort, too. The heat from her body when she spoons against me, provides soothing comfort that goes way beyond any medication. To have her by my side helps me to gain confidence with my constantly slipping body.

I am always loved, cared for and never alone. As a service dog, Maggie can be by my side wherever I go -- whether it is the hospital, airport, train, pool, store, car, hotel, restaurant, and even the White House. She is welcome all places except a military base or private home. Those are the only places I must get permission for her to be with me.

Caring for Your Service Dog

I was concerned that I would not be able to care for my dog. But NEADS will train you to learn how to take care of the dog you are matched with no matter what your physical challenges might me. Do not stress about that - they will guide you and your dog through the process.

You will be taught how to care for the dog, how to feed, groom and exercise them, despite your obstacles.

Can You Afford a Service Dog?

An average NEADS dog costs over $42,000, but they only ask clients to raise a minimum of $8,000. I was so concerned I would never be able to raise the money for my dog, but NEADS put my mind at ease, explaining that they set up an online fundraising page for you to send out that tells your story and asks for support.

I sent the link to friends and also posted the story in local stores. In three months, all the money for Maggie was donated by people, many of whom I didn’t even know. Do not stress about the cost. NEADS will work that out if you qualify for a dog. They just ask that you help them defer the cost.

To apply for a dog, go to the NEADS website, fill out the application and then expect a call for an interview. Always feel free to contact their office to be sure the request has come through and to get an update on the status of your application.

I always encourage those that are considering a service dog to go ahead and apply, even if they have reservations, to get on the waiting list. The worst that can happen if you change your mind is that someone else gets the dog selected for you.

The wait can take from a few weeks to up to a year and a half. So why not get in line?

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.

How Opioid Prescribing Guidelines Use Pseudoscience

By Michael Schatman and Jeffrey Fudin, Guest Columnists

Recently, we (along with our colleague, Dr. Jacqueline Pratt Cleary) published an open access article in the Journal of Pain Research, entitled “The MEDD Myth: The Impact of Pseudoscience on Pain Research and Prescribing Guideline Development.”

In this work, we address the issue of how governmental and managed care opioid guideline prescribing committees use the flawed concept of morphine-equivalent daily dose (MEDD or MME) to arbitrarily place limits on the amount of opioids that a clinician “should” prescribe to any patient with chronic pain -- as if all patients were identical. 

The article cites excellent research that exposes the invalid concept of MEDD – and while guideline authors are fully aware of that lack of evidence, they are hypocritically fine with using MEDD as a device to thwart chronic opioid use. In the case of opioids for chronic non-cancer pain, there is at least some evidence.  But for MEDD, there is no evidence.   

One reason the MEDD concept is not legitimate is pharmacogenomic differences – that is, due to each of our unique genetic compositions, various individuals and geographical groups metabolize some opioid analgesics differently.  These differences are often enormous. 

For example, it may require Person “A” 20 milligrams of hydrocodone to achieve adequate pain relief, while Person “B” (of the same gender and weight) may require 60 milligrams of the same drug for the same type of chronic pain condition.  Does this make Person “B” an addict?  Of course not.

We believe that by arbitrarily limiting the “appropriate” amount of an opioid that a physician should prescribe to a patient (which all recent guidelines – including the CDC’s guideline – call for), physicians feel compelled to limit the amount of opioid analgesic therapy that they prescribe – irrespective of the amount of relief that a patient with chronic pain receives. 

Is this good pain medicine practice?  Hardly.  However, in the eyes of the anti-opioid zealots who have dominated recent opioid prescribing guideline committees, their agenda of taking opioids out of the picture altogether for patients with chronic pain is evidently more important than is patient well-being.

Aside from the pharmacogentic issues, we also have conversion issues because of simple mathematics.  We cite data that clearly shows there are no universally accepted opioid equivalents.  Even if there were no issues with genetic variability, there is still no consensus on how to mathematically convert one opioid to another. For example, the state of Washington may decide on a different MEDD equivalent than the one New York state chooses.

Will the anti-opioid zealots admit that they have a non-scientifically-based agenda to take opioids out of the American chronic pain management discussion?  No – because if they were to do so, they would be seen as cruel or uncaring.  Rather, they emphasize that their concerns are for the well-being of patients and society.  Their logic suggests that if clinicians stop prescribing opioid analgesics altogether, then the unfortunate number of opioid-related overdoses and deaths will decrease dramatically. 

Not surprisingly, they lack the data that supports this assertion, yet the data are clear that when this happens, heroin use increases proportionally. 

As scientists and practitioners who work with patients with chronic pain every day, we see the damage in which these guidelines result.  For example, while the guidelines are described as “voluntary” by the committees that write them, that is clearly not the case.  Although the zealots deny the existence of a chilling effect on prescribing, there are data that suggest that progressively fewer physicians are willing to prescribe opioids since these non-evidence-based guidelines have surfaced.  Despite being touted as voluntary, physicians fear regulatory sanction should they disobey them, and accordingly are taking opioids out of their treatment armamentaria. 

Are we suggesting that opioid therapy be considered the first-line treatment for chronic pain?  Certainly not.  Chronic opioid therapy should be considered only when other available treatments have proven ineffective. However, given the for-profit health insurance industry’s business ethic of cost-containment and profitability, insurance access to many treatments that may be superior to opioid therapy are out of reach for the vast majority of Americans. We also have to remember that 20% of Americans live in underserved areas in which more sophisticated and safer treatment options are completely inaccessible.

We are concerned about this ethical imbroglio, as it is extremely damaging to our patients who suffer from the disease of chronic pain.  To quote from our article, opioid prescribing guideline committees’ continued utilization of the antiquated and invalid concept of MEDD is “scientifically, ethically, and morally inexplicable.”

As a result of this highly unethical practice, “impressionist lawmakers and anti-opioid zealots are basing clinical policy decisions on flawed concepts that ultimately could adversely affect positive outcomes for legitimate pain patients.”

It’s difficult enough to suffer from chronic pain under the best circumstances.  What patients with pain and society in general certainly don’t need is a group of smug inexperienced pain policymakers, politicians, and managed care administrators impacting public policy by evoking pseudoscience. There is sufficient good science being published that demonstrates that their reliance upon the MEDD myth is highly disingenuous.

Michael E. Schatman, PhD, is a clinical psychologist who has spent the past 30 years working in multidisciplinary chronic pain management. Until recently, he served as the Executive Director of the Foundation for Ethics in Pain Care in Bellevue, WA.

Dr. Schatman is Editor-in-Chief of the Journal of Pain Research and Director of Research for the U.S. Pain Foundation.

Jeffrey Fudin, PharmD, is a Clinical Pharmacy Specialist and Director at the Pharmacy Pain Residency Programs at the Stratton Veterans Administration Medical Center in Albany, NY.  

Dr. Fudin is Diplomate to the American Academy of Pain Management and a Fellow of both the American College of Clinical Pharmacy and the American Society of Health-system Pharmacists. 

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: The Good and Bad about CDC Guidelines

By Carol Levy, Columnist

The Centers for Disease Control and Prevention begins the summary of its new opioid guidelines by stating: “This guideline provides recommendations for primary care providers who are prescribing opioids for chronic pain outside of active cancer treatment, palliative care, and end-of-life care.”

I have issue with some of the guidelines. Other parts I think are common sense, although I know many will disagree with me.

That being said, the guidelines negate themselves when they state they are not aimed at those receiving palliative care, which is described as: “Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.”

That definition clearly includes those with chronic pain illnesses and disorders. As such it does not make sense to go after us as the main culprits of the alleged opioid epidemic.  I write alleged because there seems to be much controversy whether the epidemic exists, its cause, and the medications involved, some of which are either gotten illegally or are themselves illegal, such as heroin.

These are the guidelines:

1) Non-pharmacologic therapy and non-opioid medication are preferred for chronic pain. If opioids are used, they should be combined with non-opioid drugs and therapy as appropriate.

2) Before starting opioids for chronic pain, clinicians should establish treatment goals, including realistic goals for pain and function, and consider how opioid therapy will be discontinued if benefits do not outweigh risks.

3) Before starting and periodically during opioid therapy, clinicians should discuss known risks and realistic benefits of opioid therapy.

4) When starting opioid therapy for chronic pain, clinicians should prescribe immediate-release opioids instead of extended-release/long-acting opioids.

5) When opioids are started, clinicians should prescribe the lowest effective dosage.

6) Long-term opioid use often begins with treatment of acute pain. Clinicians should prescribe the lowest effective dose of immediate-release opioids and no greater quantity than needed for the expected duration of severe pain. Three days or less will often be sufficient; more than seven days will rarely be needed.

7) Clinicians should evaluate benefits and harms within 1 to 4 weeks of starting opioids or dose escalation, and should evaluate benefits and harms every 3 months. If harm outweighs benefits clinician should work with patients to taper opioids to lower dosages or discontinue.

8) Before starting and periodically during continuation of opioid therapy, clinicians should evaluate risk factors for opioid-related harms.

9) Clinicians should review the patient’s history of controlled substance prescriptions.

10) When prescribing opioids for chronic pain, clinicians should use urine drug testing before starting opioid therapy and consider urine drug testing at least annually.

11) Clinicians should avoid prescribing opioid pain medication and benzodiazepines concurrently.

12) Clinicians should offer or arrange evidence-based treatment.

Most of these guidelines seem to be to be based on common sense; however I take great umbrage at the recommendation about urine drug testing. I do not know of any other patient group where a patient is presumed guilty or felonious. It casts cast a black mark on every person who has a chronic pain disorder and for whom opiates are prescribed.

The guidelines also miss the mark by not differentiating between patients for whom physical and alternative therapies can help and those they cannot. For instance, trigeminal neuralgia and other cranial neuropathies will get no benefit whatsoever from those kinds of therapies. Lupus, multiple sclerosis, chronic regional pain syndrome (CRPS/RSD), and many other conditions are also not responsive or greatly responsive to physical therapy, targeted injections and other types of nonopiod therapies.

Suggesting other forms of therapy for a population that is not helped by them is not palliative, in any sense of the word.

However, I think we hurt ourselves when we jump on a bandwagon and say the whole idea of guidelines are hurtful to our community. We need to look at them clearly.

It should be pro forma that the doctor talk to his patient about the harms and benefits of any prescribed treatment. It should be standard practice for a doctor to evaluate if the treatment is helping or not, and make any necessary changes.

It is only logical that the medical community treat the chronic pain community as they would any other; with professionalism, common sense, decency, and thoughtful 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.

Wear, Tear & Care: Recovering from Spinal Surgery

By J.W. Kain, Columnist

For those of you playing the home game (i.e. following my blog), I’ve been recuperating from a cervical discectomy and fusion of C4-C5. That was February 19. I’ve been recovering in an amazing fashion, much faster than my first fusion of C5-C6.

Just north of a month later, I also had thoracic injections at T-11 through L-1. I was far more scared of this procedure than the fusion -- and I’ve had injections before, so it was nothing new. I knew exactly what was going to happen, but I didn’t know how my body would react. Why? Read on.

My Abbreviated Back Story

My injuries have followed a strange road. When my mom’s car was stopped in traffic in 2004, we were rear-ended at 65 miles per hour. I was seventeen. I broke my spine in four places: T-11 through L-1, but also a facet joint that wasn’t found until a year later when it had calcified over a cluster of nerves. That’s why every movement in my midsection causes pain.

Nine years later, my car was rear-ended again. This led to my cervical and lumbar issues, the two fusions, and a frightful double-injury to my thoracic region. We haven’t touched that area since before the second accident because every procedure known to man (shy of surgery) had been attempted, and they generally don’t do surgery there unless you can’t walk. Plus, my neck was being very loud, so I had to deal with that before opening another can of worms. My doc decided to start at my head and work our way down from there.

My pain management doctor is incredible, amazing. Sympathetic, and smart as hell. Even so, in this current political climate and with the CDC’s asinine new guidelines, I have become afraid of the medical system in which I am firmly entrenched. Let’s discuss why.

This was taken mid-February. We’ve come quite a long way in a short amount of time. Now the hair is basically a pixie cut instead of the Furiosa.

The CDC Is Actively Harming Chronic Pain Patients

Normally I don’t write about the government. I don’t write about controversial issues because I don’t like arguing with people in the comments section. I didn’t write about the CDC releasing its opioid guidelines and how they glossed over chronic pain patients like we don’t exist. Before I get back to my thoracic injection story, here’s a blurb about why the CDC is so far off the mark that it hurts my heart.

One of my readers and I have been corresponding. After ages of complaining to doctors about intense, all-consuming pain, they discovered she had a tethered spinal cord -- as in, her head is essentially falling off her neck, according to the MRI report. Not only that, but those MRIs she’d fought to get, that her pain management doctor had said were “unnecessary,” revealed a host of other problems that will likely all merit surgery at multiple levels of her spine. The level of pain in which she lives is unholy. And now she -- and we -- have to fight for pain medication? We know our bodies. We know what works. And sometimes we have no other options.

The CDC should not have the power to take away a method of pain control upon which so many people rely without providing appropriate alternatives. You can’t tell someone who’s had to rely on Percocet for 30 years, “Oh, well, we’re taking those away now. We’ll wean you off those, refer you to physical therapy, and really get you into meditation.”

Meditation is great. Mindfulness is great. Yoga is great. Those alternative medicines are great. I use them all. However, they are great as a complement to medication. Sometimes medication is all we can use in order to actually thrive in this world and not just sit in a chair all day, every day, watching television and not able to function. We don’t want to have to apply for SSDI. We want to live. We want to contribute to society.

We don’t take opioids to get high. We take opioids to feel normal.

Back to Spinal Injections

Anyway. Rant aside, the fact that I have been in two car accidents, have literally thousands of pages of medical history to back me up, and have countless doctors who can verify structural damage, I am still afraid of not being believed. Pain is subjective. People are prone to exaggeration. We have to fend for ourselves unless we find that one-in-a-million doctor who can help and is not afraid of prescribing legitimate medication.

Look at the California doctor who was recently convicted of murder for overprescribing painkillers for clients. She was actually reckless in her actions, but her conviction echoed throughout the medical community. Many other doctors will now prefer to be hands-off entirely, leaving patients in the lurch.

my C4-C6 fusion

Thankfully, I have found the best pain management doctor at Beth Israel Deaconess Medical Center in Boston. He understands that I am not just one big injury; I am a cluster of injuries at three different levels of my spine that were brought on by two separate car accidents. It doesn’t seem like it’d be difficult to grasp, but so many doctors didn’t believe that the second car accident -- much less drastic than the first -- could cause so much pain.

It wasn’t just the accident; it was the compounding of pain. I was already in pain and had been for nine years. This second accident created more pain. It’s a simple equation that many pain clinics somehow failed to grasp. Thankfully, my spine surgeon and my pain management doctor got me. They understood. They cared.

Which is why the thoracic injections were so horrifying. My brother was my designated ride, and after the procedure the nurses had to bring him back into the holding area because I was sobbing and on the brink of hysteria. (Naturally, in his haste he left my purse and coat in the waiting room, but he remembered all of his important stuff. Even in that state, I could see the humor of the situation.)

The pain of those thoracic injections -- an area that hasn’t been touched for probably eight years -- was so intense that I was literally screaming. These were diagnostic injections and a bit of steroid to see if the area was responsive after all this time. The doctormopoulos instructed the tech to give me a stress ball to squeeze and lots of tissues to drench. It took fewer than 10 minutes, but those 10 minutes were agony I have not felt before or since.

What if that had happened in front of a doctor I’d never met before? Somehow this was the same exact resident team that had done my lumbar injections a few months ago. Sometimes doctors switch up their accompanying residents, but nope -- we recognized one another. They saw the stark before-and-after versions of me.

What if that travesty were my first procedure? The new doctor would’ve stopped everything. We might not even have gotten to injections, because he might’ve glanced over my voluminous medical chart and said, “There’s nothing new to try, and they already did so much. This might be the best it gets for you.” And so many of us are told this!

Nobody sits you down after an accident and says, “You’re going to have chronic pain for the rest of your life.” It’s not like a cancer diagnosis when you only have so long to live. It’s always, “Well, at least you didn’t die!” We all think that we deserve to feel like we did before. We put our lives on hold because we think “I am going to get back to what I was. I’ll do the things I dreamed of doing... when I feel better.”

When I feel better. It’s always that thought in the back of our minds.

I finally realized that there might come a threshold where this is the best I get, and it won’t be close to what I used to be. Sometimes it’s not physically possible to be 100 percent again. If I can live a life that doesn’t just feel like “functioning,” like an automaton whirring my way through the day until I power down at night, then I will have succeeded. If I can do my job and contribute to society, I will have won. Then I think of all the patients who don’t have doctors they trust, who aren’t listened to, who aren’t taken seriously, and who aren’t believed.

In this new world of medical uncertainty, chronic illness patients need to form networks and advocacy groups. We need to share experiences with doctors. Was he understanding? Was she ready to help? Is their clinic’s position “deep breathing” instead of proper medication?

We need to participate, no matter how terrible we feel. In any capacity, in any way we can, we need to be our own advocates.

that's me. Makeup and non-pajamas for the first time in almost a month.

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

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

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

Pain Isn’t Enough for a Good Healthcare Relationship

By Barby Ingle, Columnist

We often hear that love is not enough to sustain a relationship. That’s true not only in our personal relationships, but in our medical ones – the relationship between the patient and provider. That relationship needs to work for better daily living, better health, and can even be the difference between life and death. 

Take the marriage advice many of us are given before we walk down the aisle. We hear a good relationship does not just happen; you have to give it time and patience, and there needs to be two people who truly want to be together. You need more than just love to make the relationship work.

Now let’s look at it in terms of a healthcare relationship. A good relationship with your provider doesn’t just happen. You have to give it time, patience, and two people (the provider and patient) who truly want to be working towards the same goal. Pain alone is not enough to sustain the relationship. It takes much more.  

When I am going through a really hard challenging time, in a pain flare or bad cycle of pain, it is a pivotal time in my care and I have to make sure my dance partner is on the same count, dance floor, and routine as me. It helps that I have a strong husband who advocates for me, but he can’t order the tests, procedures, equipment or medications that I need. In the pain relationship, your provider matters.  

With provider appointments getting shorter and shorter, how are we going to make our quality time better? How do I bring up that I am having trouble with opioid induced constipation, anxiety, depression, self-esteem, or sex life as a result of living with pain? Do I even bring these things up? Is there anything that my pain partner can do for me anyway? What if I have to go to the dreaded emergency room? Is the ER doctor going to tell everyone I am a ‘bad date’ drug seeker?  

Look folks, I am just looking to manage my pain. Life pops up and happens, leading me into another’s hands. The ER doctor doesn’t know me. Heck, some of my other partners don’t know me like they should. I don’t want them making assumptions based on past experiences with other patients. That can be deadly to me and my health. I have to rely on this person to see past the pain and help treat me as a whole person. I don’t want an enemy. I don’t want to be forever fighting, bickering, and whining to get the care I need. 

Sometimes you get the dreaded letter. You have 30 days to find a new partner and pain team mate. Unlike in love, you can’t choose to go it alone. You need that team member, you need that provider, that person that goes into the trenches with you. Love or hate your provider, you can no longer go on like this. You must stop, analyze the situation and communicate. Do you still want to see each other? Can they help you move on? Are they just going to drop you? Has everything changed so much that the partnership can’t be worked out?

If you decide you will stay together and keep working together, how do you work it out so moving forward you can be committed to the same goals and treat each other with respect and dignity?  Hopefully, you begin to do the three things you need to make it work: time, patience and two people who truly want to be together in spite of all the challenges and not because of them. 

You have to appreciate that neither of you wants you to be in pain. There is no reason to resent each other. Without the pain you wouldn’t be in each other’s lives. Focus your communication on the positives and address the negatives in a productive manner. Try to acknowledge the provider by saying, “It must be difficult to see all of us patients who are dealing with hard challenging situations. Thank you for working to help me.” Having the provider hear your thanks can go a long way.

Once you get the communication going, don’t withdraw from talking about those harder issues. Providers really need to hear your adjectives describing the pain, your life, your needs, your goals, and your progress. Unlike a normal relationship, this is one where you need them more than they need you. Since this is so important, make sure to get the right provider for your disease, who can also partner with you to assist your life. After all, either through insurance or cash, you’re paying this person to be involved with you. Pain brings you together, but it is not enough.  

After appreciation and communication comes helping them help you. Help them want to be on your team. Make it easier for them by being organized. Make your time together count, every time. If they are not fulfilling your needs or helping you reach your goals, don’t be afraid to move on or fix it. It is your responsibility. I know it takes work. I am a patient as well. It is work to be a patient.

When an appointment ends, do your homework, make notes, and create a checklist to keep yourself on track at the next one. Quality time can be hampered if you go off track, so make sure to get in your medical and pain care needs before bringing up other items. And always redirect the end of the appointment back to restating the goals, prescriptions and whatever testing is needed before the next appointment.

You can’t assume the provider knows your whole story, even if you have seen them for years. I have had the same primary care physician for 11 years now. He still has to pull my file to find out what medications he has me on and what I have tried before. Sometimes, I still have to remind him.

I know we have a mutual respect for each other and know that he is helping me get better. He is open to hearing my ideas and talking with the other providers in my life so we are all on the same page. He loves getting compliments, but is the first to admit that he doesn’t know everything about Reflex Sympathetic Dystrophy. He has taken the resources I bring to him and learned from them. This has helped me and his other patients.

Practicing these simple techniques can help your pain management. Since you have to live life with a provider in it, make it the best patient-provider relationship it can be. Sharing your pain care with a great provider is something you have to help create. .

It all comes down to showing support, responsibility, time management, and knowing that pain alone is not enough to sustain proper and timely care with your provider.

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 represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Reasons Caregivers are Heroes and Saints

By Lynn Webster, MD, Guest Columnist

Some religions call their holiest people saints. In secular speak, a saint is a person who is pure, honest, and beyond reproach, and who mostly devotes their life to benefit others. In our more common vernacular, we use the word “heroes” to describe those who sacrifice themselves for the good of others.

I have decided that my grandfather was either a saint or a hero. That epiphany came to me recently, long after he passed.

My grandmother had multiple sclerosis. She was in constant pain. Sometimes, her pain was severe enough that she would scream that she wished to die. Grandma could not move from one position to another while she was sitting in a chair without assistance.

From the time I remember, she sat frozen with her knees at a right angle to her hips. Her 90-pound frame – which looked like a skeleton – had to be carried from the living room chair to the toilet to the kitchen table to the bed.

Then, when she was in bed, she had to lie on her side. That was because her legs had developed permanent contractures, preventing her from resting in any other position.

During the eighteen years of my childhood and youth, my grandfather rarely left my grandmother’s side except to work in the fields (we lived on a farm). I never recall my grandfather speaking negatively to her or expressing anger at her dependence. Nor, in my memory, did he ever ask anyone else in the family to help care for her.

roy webster

Caregivers Today

Today, we would call my grandfather a “caregiver,” but that sounds inadequate to me. That level of generosity requires a higher level of attribution: saint or hero. Take your pick.

People with acute pain receive flowers, calls, and visits. That pain, everyone knows, will eventually pass. The inconvenience, too, will end.

But when the pain becomes chronic, those loving tributes and the connections soon fade. That leaves the person with pain isolated. Family and friends drift away because their own schedules make demands or because they don’t know how to make a meaningful contribution.

The caregiver often shares this isolation. It is the daily responsibility that separates the caregiver from others who care about the ill person. The others may sincerely care, but they are not in the foxhole.

Who is a caregiver?

The caregiver is most often an adult child, parent, or spouse. They face innumerable challenges. They deprive themselves of a normal schedule. They forgo pleasures and delegate other responsibilities so they can be there for the one in need. They do this out of love, a sense of duty, or both.

The role of giving care to a person with chronic pain is not a sprint but a marathon. People who have chronic pain may live for years, and so goes the role of the caregiver.

Responsibilities are never-ending. The duties include nursing, banking, cooking, housecleaning, bill paying, and all other activities required to exist in society.

Every day in my practice, as I saw patients with chronic pain, I would also see caregivers. I was always in awe of their spirit and generosity. They, along with my grandfather, are heroes in our society.

We can call them heroes, or we can refer to them as saints. I am not sure I can tell the difference between the two. To me, my grandfather was both.

Lynn R. Webster, MD, is past President of the American Academy of Pain Medicine, Vice President of scientific affairs at PRA Health Sciences, and the author of “The Painful Truth.”

This column is republished with permission from Dr. Webster’s blog.

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 Migraine Sufferer Finds Hope Again

By Paul Hannah, Guest Columnist

On a Sunday morning 33 years ago, I was reading a newspaper in bed and was suddenly struck with a headache. I hadn't really had many headaches before, so I expected that this would pass with some non-prescription medication and an hour or so in bed.

I was very wrong.

I still have that headache today. If it would have stayed at a 1/10 pain level, I probably would not have done much about it. However, it didn't stay that low and that was where the problem lies.

When the headache moves to 4/10 or 5/10 I get concerned, because if I don't stop it at that point, it will rapidly scale up to a full migraine.

I have read other accounts of migraines, but very few accord with mine. My neck gets stiff, the trapezius muscles lock up, and my eyes start to hurt. I become rapidly photophobic and the pain gathers and localizes in the frontal lobe of my brain.

Once it reaches 6/10, I get a syringe from my migraine drawer and inject Maxolon into my arm muscle and immediately lie down. As a result of the photophobia, I have built myself a four poster bed so that I can draw the curtains and be in total darkness. After the Maxolon kicks in, I drink some liquids, often very strong coffee, and take as many of the various painkillers as I dare.

PAUL HANNAH

About fifty percent of the time, that is enough and spending the next five or ten hours in bed gets me well enough to function again. The other fifty percent of the time, it gets worse. Much worse.

It feels like someone is reaching into my skull and squeezing the frontal lobe of my brain with each beat of my heart. At this point, it becomes imperative, as bizarre as it seems, for me to concentrate. This is because the pain momentarily stops when I sub-consciously hold my breath, and then when I do finally breathe, it gets worse.

These migraines happen so frequently and unpredictably that I have given up traveling. I joke and say that I have seen the inside of too many foreign hospitals - but it is no joke, I love traveling. I miss it terribly.

I have a sympathetic doctor who will write scripts for pethidine (Demerol) every six weeks. It took literally years of doctor shopping to find him. If I have any pethidine left, I give myself an injection. The wave of relief that passes through me with that drug is hard to describe. I heard an opium addict describe her relief like this: "The pain is still there, you can still feel its presence, but it doesn't hurt anymore." It is like that for me.

Every migraine sufferer I have discussed this with has resonated with three annoying things that people come up with. Some women (and it always has been women in my experience) place two fingers to their temples and say, "I have a migraine". Anyone that has ever experienced a 10/10 could no more speak and function as 'normally' as that, than fly. They simply have no idea how bad it is. Fingers are regarded as among the most sensitive to pain areas of the body and anyone hitting a thumb with a hammer can attest.

Eighteen months ago I had an accident in my workshop and cut off my left index finger, half of my thumb and mashed up the other fingers in that hand. The pain level was 5/10. I took the painkillers the paramedics offered, but I didn't need them. The painkillers I took in hospital were for my head, not my hand.

The second annoying thing is when we are asked, "Have you looked into the cause?" I am barely able to contain my sarcasm when confronted with this. I desperately want to say something like "Well goodness me! That IS a good idea, why didn't I think of this thirty years ago?" But I don't, I just look away and say something equally inane.

Just as annoying are those that have an aunt who was cured by giving up coffee (tried it for 9 months, no change), going through menopause (strangely enough, not all that helpful to me) or taken some homeopathic/natural or equally nonsense cure (One said a foot massage was sure to fix it).

I am fortunate in that I live in Australia, a place where universal free healthcare is considered a citizen's right and a government's responsibility. So I have had several MRIs, X-rays and even an EEG, nothing has ever shown up as anything but normal.

When Francis Collins finished the Human Genome Project I thought it was marvelous from a human achievement point of view, but nothing more. I had no idea that it was going to change my life. But change it, it did and in all the right ways.

When I heard about this from another genuine migraine sufferer I took a blood test and for the first time in 33 years I had a non-normal result. It seems there is a genetic mutation called MTHFR, and if a person has one of them, it makes it difficult to process vitamin B. I have two of the sods.

I have spent my life being deficient in Vitamin B2, all the while my blood was full of the stuff. Both of those conditions can cause migraines. For the last eight weeks I have been taking a number of supplments and a cream - DHEA/CHYSIN, zinc, B-2, 5-MTHF and D-3. So far, I have had nothing worse than a 4/10 headache and I have every reason to suspect that this improvement will continue.

The Human Genome Project has given me something I thought I would never have again: hope. And hope to the hopeless is a marvelous thing. Truly marvelous.

I urge every migraine sufferer who can afford it to take the test. This isn't foot massage or acupuncture nonsense, it might actually work.

Paul Hannah lives in a small town just north of Brisbane, Australia on a few acres of bush populated with wallabies, koalas and a wide variety of native birds. He is retired and enjoys writing, history, astronomy and woodwork. 

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.

Changing Attitudes about Doctors

By Emily Ullrich, Columnist

Over the six years I've dealt with chronic pain, doctors' attitudes toward me have changed. My attitude toward them has also changed, unfortunately, for the worse.

It changed because my experiences with doctors changed. Those of you who have been dealing with chronic illness for a significant time will likely know exactly what I mean. At first, we are a challenge. They want to see if they can figure out what the last doctor could not. They want to help us.

But, when they see that we are not getting better and that the only thing that they can do is manage our symptoms, their attitude changes. This is particularly true for those of us with multiple diagnoses.

I started with pelvic pain. I had a compassionate primary care doctor and, at the time, there was not such hysteria surrounding opioid pain medicine. He did his best to manage my pain and sent me to a pelvic pain specialist.

The pelvic pain specialist gave me hope. He let me know that it was not all in my head and that he felt we could make progress. He was honest and told me that we may not be able to eliminate the pain, but he was confident that we could get it down to a level with which I could live.

He tried many different treatments over the years and things only got worse. Finally, I suggested something. And it worked. He isn't happy to see me anymore.

As time progressed, I began to develop more symptoms and more potential diagnoses. I read about six books on fibromyalgia and knew that I had it. I brought this information to my primary care doctor, who laughed at me. He told me he “did not believe in fibro.” I argued that clearly it was something that affected enough people that it was worth considering.

Reluctantly, he referred me to a neurologist, who confirmed my suspicions. I later read in my primary care doctor's notes that “she is convinced she has 'fibromyalgia.'” This made me furious. I could feel his condescending tone.

Almost every visit with my doctor, he would prescribe some new medicine (which I now know he was getting kickbacks from, because they were always the meds he had samples of). I was on a constant roller coaster of side effects, systemic agitation, and withdrawal. He changed or suddenly took me off different antidepressants, benzodiazepines, and other meds regularly. When I complained that the meds where making things worse, he became increasingly frustrated with me.

As my new ailments continued to pile up, the help I was getting began to taper down. I was angry, depressed, confused, and losing hope by the minute. Then, I read this letter from a doctor and this article by another doctor, both expressing frustration in dealing with pain patients. They made sense. Although they weren’t helpful to my health, they did explain what was happening to me with doctors.

I am a very strong-willed woman. I have a booming voice, I am confident in my intelligence and research. I come to doctor's appointments prepared and I ask questions until I get an answer I am satisfied with. I thought that most of these things were characteristics of a “good patient.” It turns out, they're not. They are things that intimidate and annoy doctors.

So, I tried to tone it down a bit. I still came prepared and well-informed about my ailments, but tried to soften by voice and approach. Instead of forging forward with my thoughts, I started to try to make doctors feel they were the ones who came up with ideas for treatment.

I felt like a phony. And it really wasn't helping in the overall picture. Doctors “liked” me better, but I didn't get what I wanted out of them.

My multitude of ailments has continued to accumulate for years. All of it seems to have been kicked off by episodes of malaria, amoebiasis (a parasite infection) and typhoid fever when I was in Kenya. I returned to the U.S. and my health hasn't been the same since. I and many of my healthcare providers suspected a connection, but I've never been able to get too far with that theory.

What I have realized is that fighting to get diagnosed with fibromyalgia was not the answer I had hoped for. In fact, it was an excuse for doctors who can't find an answer of their own. Lately, no matter what I'm suffering from, there are three possible diagnoses: fibromyalgia, irritable bowel syndrome or the fact that I take opioids.

I can almost count on it. After a doctor tries one or two treatment approaches, and I don't respond in the way they hoped or within a time frame that is considered “normal” (which, by the way, I NEVER do), it's because I take pain medicine, have IBS or fibromyalgia.

Most recently, after multiple hospital admissions with acute upper abdominal pain and vomiting (and even after a test showed ampullary stenosis, scarring of the pancreas, and reoccurring episodes of pancreatitis) the doctor still did not want to “label” me with chronic pancreatitis. Instead, he decided it is because I have IBS or fibromyalgia. After I argued about those diagnoses, the doctor settled on “narcotic bowel syndrome.”

Once you reach a certain number of diagnoses, it's like they check out. I can feel it. When they see me coming, they begin to put off a vibe of annoyance and distrust. It's heartbreaking. I need them. I need to be given a fair shot. But they don't want to deal with me. I'm too complicated.

On top of it all, I’m told I read too much. More than one doctor has said, “Stop reading.”

It’s as though they want me to just trust everything they say and never challenge it. That would be nice. I wish I could. But how can I, when they use my need for pain medicine or my pre-existing diagnoses as a crutch?

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

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

Pain Companion: Talking About Pain

By Sarah Anne Shockley, Columnist

A lot of us don’t like to talk about our pain, understandably. It often seems easier just to live with it in silence than to discuss it with anyone. Ever.

If others have never experienced long-term pain or are pain-avoidant, it can be nearly impossible for them to understand what we’re talking about. We may be answered with blank stares or outright disbelief.

Or, what often happens is that others feel they must try to fix us. We are offered all kinds of medical advice, given the business card of a favorite massage therapist, or web address for the latest miracle supplement. Or we’re told exactly what we don't need to hear: buck up, carry on, be more positive, grin and bear it. Fending off the well-meaning fixers can be exhausting, so we just keep quiet.

And, when we do talk honestly and openly about our pain, sometimes it feels like we’re walking right into the center of it. We become very present to it, and if it also feels like we’re not really heard or validated, we’ve added another level of emotional pain and disappointment to our physical pain. So why bother?

These are all perfectly understandable reasons for not talking about pain.

So why would we talk about it?

Because the alternative - never fully expressing to anyone what we are going through at the deepest levels - is much harder in the long run.  As you probably know quite well, living with pain can be extremely isolating. We are alone in our unique and deeply intimate experience of pain.

While we have very good reasons not to talk about our pain with everyone, if we never talk about it we can feel increasingly disconnected from others, from life, and from ourselves. And I know from personal experience that this can be a very difficult way to live.

For eight years, the only person who understood the full extent of the pain I was in was my neurologist. For all of the reasons listed above, I simply never told anyone else how bad it really was. And I can say at this point that living with pain doesn't get easier and life doesn’t get better by not talking about it. That choice only increases the feelings of invisibility, isolation, and disconnection.

However, talking openly about pain is a tricky business. Finding someone who can be with us and just listen is challenging because so many think they are being helpful by trying to distract us from our pain, or help us overcome, avoid, or downplay it.

People are so geared toward ending pain that they are not always prepared to just be with us and be a compassionate witness. And some people are living with their own unexpressed pain, whether physical or emotional, and they just don’t have the capacity to hear about ours.

So, I would not advocate talking about your pain to just anyone.  It requires a somewhat selective process. There are friends and family that you would like to be able to share with who will not be willing or able. Think about the people in your life that you consider good listeners and who you can trust to truly have your best interests at heart.

Even if there is no one you know who has experienced physical pain in the way that you have, there will most likely be someone who has experienced a deep loss or had to face very trying circumstances that will give them a deeper sense of compassion for what you are going through. They may have been dealing with their own private pains and you may be surprised to find out that they understand about hiding, isolation and loneliness. If you feel there is no one like that in your life, then a trained therapist can be a good choice.

Once you’ve ascertained that this person is an appropriate choice and they are agreeable, then help them understand that what you need is a pair of receptive ears and a receptive heart, and that talking about your pain won’t make it worse, but will actually help you.

Tell them that what you are going to share may be difficult for them to hear, but that you really need them to just be there and hear it without offering anything back for now. Ask them to please hear you out without trying to change anything, fix anything, offer advice, or console you.

Before you have your talk, see if they are willing to agree to the following ground rules:

• Listen to your story without interrupting
• Be present with you in your pain without pity and without fixing
• To not offer advice, just witness

Let them know that the most supportive thing they can do for you right now is not to try to make it all better or make it all go away, but to just be present with you and let you have your pain and not try to change anything for now.

You may want to tell several people, but you may also find that one trusted person who can see you, hear you, and be with you in it is enough. Then, of course, express your gratitude in whatever way you feel is appropriate and let them know what a great gift they have given to you.

And, perhaps when you are done telling your story to this person, on another day, you can offer receptive ears and a receptive heart to them.

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.

Hummingbirds: A Poem About Pain

"Hummingbirds"

By Connie Dyste Tucker

I have one of my own,

a hummingbird, bright of feather,

light of wing. She fits into my day,

sipping my sugar, hardly hovering, always

sparkling.

Bird dogs, I have one of those, too.

Keen of sight, smart of nose.

He lays at my feet

dreaming of birds, not hummingbirds,

birds of substance – quail, grouse.

Birds he can present to us, his tiny, sad gifts.

And a spooky cat, a small black blanket

who sits in a chair, scared of the world.

For good reason.

So when I see him stroll out the kitchen door,

past the dogs,

boldly, unafraid, to a lovely spot in the garden,

I think, there goes a cat who can pull it off

when he needs to, you know, the confidence

thing.

I can take my pain and put it in my pocket,

walk out the door and say to the scary world,

I am light of feather, swift of wing.

I am not this sad heavy body,

I am dreaming of birds, I can fly away from this,

I can sip sugar. I can eat my words.

Editor’s note: Connie Dyste Tucker is a family friend who passed away last year after a long struggle with lung cancer and chronic pain.

Pain News Network invites other readers to share their stories (and poems) with us. 

Send them to:  editor@PainNewsNetwork.org. 

Sneeze Alert: What It’s Like to Taper off Opioids

By Crystal Lindell, Columnist

As a result of feeling a bit better lately, I have been trying to go off all of my opioid pain medications, which at one point totaled as much as 60 mg a day — three, 8-hour time release 15 mg morphine pills and then as many as three, short-acting, 5 mg hydrocodone as needed.

I worked my way down from 60 mg a day to 15 mg a day over the course of a month, and then tried to drop down to zero. It did not go well. You can read more about that here.

A little over a week after trying to go cold turkey, for various reasons involving a fresh pain flare and horrific withdrawal symptoms, I ended up back on the drugs. And I have spent the last few months working with a team of doctors trying to figure all this out and attempting to slowly taper off those last 15 mg. 

This is what it’s been like:

Withdrawal is sneezing. Every three or four minutes. As soon as the opioids wear off at all — I’m sneezing.

And it’s anxiety. And waking up drenched in sweat. And it’s the kind of diarrhea that you have to learn to accept as a part of your life now. The kind that fills the toilet multiple times a day and leaves your legs weak. 

It’s calling your high school boyfriend at 2 p.m. on a Friday because you’re in Target having an anxiety attack for no reason and you need to talk to someone, anyone, or you might actually die right there between the fitting room and the yoga pants display. It’s immediately regretting that phone call and then having anxiety about why you made it in the first place.

It’s not sleeping. God is withdrawal not sleeping. You’re lucky if you get four hours in one night. And waking up at 3 a.m.   

It’s giving up, and then trying again tomorrow.

It’s realizing that cutting your pills in half and taking them in a different time configuration actually helps a lot. And it’s tracking every dose and every symptom in Google Keep.

It’s deciding that maybe dating isn’t the greatest idea when your fight or flight response is literally kicking in every time it takes a guy more than seven minutes to respond to a text message. It’s giving in and going out with a guy on a Tuesday night anyway because the escape is worth it.  

It’s doing a lot of things you aren’t proud of.

It’s your primary care doctor telling you that other people have no problems at all going off these drugs, then qualifying his statement with, “But, I mean, I believe you,” which somehow implies he doesn’t.

It’s reaching out to your old psychologist and pleading for help, and then getting referred to a psychiatrist who specializes in this sort of thing and finally finding one person on the whole entire Earth who actually has some idea of what you’re going through.

It’s a glass of wine, and a handful of Advil, and lots of sugar candy, as you try to find anything to help manage the symptoms.

It’s slow. Withdrawal is maddeningly slow. It’s going down 1.25 mg in a day and feeling like the world is ending and waking up more anxious than you’ve ever been. And wondering if you can actually do this.

And then it’s a post anxiety-crash four hours later, and being so tired that you can’t even move your arm to check your phone.

Withdrawal is multiple people calling you a drug addict to your face because your body is physically dependent on a medication you were given by a doctor. It’s multiple people saying you just need more willpower and more prayer and more desire to get off the drugs.

It’s wondering if maybe you are a drug addict.

It’s trying to eat Taco Bell because Taco Bell usually solves everything and then realizing that you can’t even stomach a cheesy gordita crunch because the withdrawal has destroyed your appetite. 

It’s working out to help the anxiety, and using the stupid Calm App for meditations that never work, and texting your best friend 72 times an hour so that you know you’re not alone. And then texting her again. And it’s breathing her oxygen for awhile because you don’t seem to have any of your own.

It’s intestinal cramping so severe that you’re literally doubled over in pain on the couch, crying out in pain, wondering if this is the end.

It’s deciding to go back to church because for some reason, for that hour each week, you feel maybe a little bit of peace.

Withdrawal is feeling weak.

It’s wondering if you’ll ever feel normal again. It’s wondering that over and over and over and trying to convince yourself that someday you will get a full night's sleep and you won’t wake up covered in sweat and you won’t have diarrhea first thing in the morning and you won’t have the crushing feeling of anxiety as you greet the day.

Withdrawal is trying to live a normal life while your body goes through hell every day. It’s trying to work and be a good friend and a decent human being when all you want to do is die. It’s trying to figure out how much information, exactly, you should give your boss about your opioid dependence.

It’s having a pain flare and thinking that maybe the drugs were doing more than you thought, and wondering if you’re even doing the right thing.

It’s saying that John Green quote about survival to yourself 59 times a day. The one that goes, “I'm not saying that everything is survivable. Just that everything except the last thing is.” And then it’s reminding yourself that this is probably not the last thing. 

And it’s reaching out to your Facebook friend who has the same chronic pain you have and him telling you that you have to do this — it’s important that you do this — because if you don’t the next best option is in-patient treatment and you don’t want that.

It’s trying to distract yourself with The Hobbit, and Spotlight and Downtown Abbey, and Facebook.

Withdrawal is still happening. It’s ongoing. It’s a long-term goal. A hope that one day you’ll be clean — whatever that means. 

It’s praying, and crying, and giving up, and trying again.

And it’s sneezing.

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.

A Pained Life: Change in Pain Care Policy Overdue

By Carol Levy, Columnist

In 2003, the National Pain Care Policy Act was first introduced in the U.S. Congress, calling for “adequate pain care research, education, and treatment as national public health priorities.”

At the time, information about chronic pain and the effect it has on lost productivity and economy was important enough that Rep. Mike Rogers (R-Michigan) wanted to try and do something about it.

While the House approved his bill, the Senate refused to take any action. Three more times it was introduced. Each time the House passed it and the Senate wouldn’t even consider it.

In the last few years there has been the gigantic hue and cry about the “opioid epidemic.” More often than not, the chronic pain community is named as culprit number one.

Just imagine if the Senate had listened in 2003 when Rogers first introduced his legislation.

Nearly 13 years have passed. How many new drugs? How many new treatments and procedures might have been developed by now? Would opioids still be one of the first weapons doctors arm their patients with? Would they still be telling patients, “You just need to learn to live with it.”

I often hear this from many in the pain community: “My doctor will not continue giving me the narcotic he has had me on for years. He no longer commiserates with me and says he will do all he can to help. Now he says ‘Sorry, I have decided to no longer write those prescriptions.’”

The patient looks at him, beseechingly. “What am I supposed to do? Do you have anything else to give me, to do for me? Please.”

He shakes his head, maybe ruefully, maybe not. “Sorry. Nothing else I can do for you.”

Many of us know the next step personally. We call other physicians’ offices. “Are you accepting new patients?” Too often the answer is no.

If they say yes and you add, “I am looking for a doctor to prescribe medication for my chronic pain,” the door is slammed shut in our ear. “We do not take patients who want narcotics.”

Now we are seen as a drug seeker. All because we want to stop or at the least reduce the pain.

If we were diabetic and said, “I am looking for a doctor to prescribe my insulin,” the reception would most probably be quite different. At worst they’d say, “The doctor will decide if that's right for you or if a different form of treatment is better.”

Patients should not have to search high and low for a doctor to treat them. And a patient saying upfront what they feel they need is not a sign they are fakers, drug seekers or malingerers.

I get it. When a patient says they want oxycodone, hydrocodone or Vicodin, I can understand it being heard as “I want opiates.” Instead of a discussion about working together to figure out what to do, it is easier to dismiss the patient.

When the Affordable Care Act (ACA) passed, it included amendments that were part of the National Pain Care Policy Act of 2003.

President Obama recently said, “If we go to doctors right now and say 'Don't overprescribe' without providing some mechanisms for people in these communities to deal with the pain that they have or the issues that they have, then we're not going to solve the problem.”

It is wonderful that he recognizes this. But it is way past time to see action on the ACA's call to arms against chronic pain.

As it now stands, many in Congress want to become the third person in the consulting room, trying to proscribe what doctors prescribe if it is in the form of an opioid.

Research and development of new treatments -- including non-opioid drugs -- is what we have needed and continue to need. Opioids should be the last “go to” measure, not the first or only one.

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.