How I Learned to Handle Chronic Pain

By Emily Ullrich, Columnist

It occurred to me the other day that I’ve come a long way since my initial chronic illness set in. It has been a rough journey, but overall, I feel myself to be “improved.”

I have more self-esteem. I am more positive emotionally and spiritually. And I am far better at handling my multitude of symptoms than I was.

I went through complete and utter Hell, but came out of it, and I think it is really important for people who are new to chronic pain and for those who are really struggling to know that it will get better.

Let me be clear. I am not saying, “Don’t worry, it’ll all straighten itself out and you’ll be back to your old self in no time.” I am absolutely not saying that. But, I am saying if you work, learn, and lean into it, it will get better—at least you will get better at handling it.

I think every so often it is important to assess yourself, your goals, your progress, your changes, your heart, where you are, and where you need to go. When you develop chronic pain, these goals and dreams have to be adjusted.

In 2011, I returned to the United States a shell of a woman. My overly ambitious goal to start a film school and a new life in Kenya had not worked out the way I had imagined. Worst of all, I kept getting sick, and finally I had to put my tail between my legs and go home to momma, in Kentucky.

I woke up on my very first morning back on American soil screaming in pain. I had a kidney stone. It was some kind of divine intervention that this pain held off over the 25 hour flight, and the days before I left Kenya, because there’s no way I could have handled it or found help.

EMILY UlLRICH

This was just the beginning of a slew of chronic illnesses, diagnoses, misdiagnoses, doctor and hospital visits -- so many that they flow into one another and overlap in my mind -- and an ambush of tumultuous emotions, all of which would be a nightmare for me and my poor mother, for the next three years or so.

From the time the kidney stone stirred a commotion in my body, the pain changed, and it never really went away. It became chronic pelvic pain, then fibromyalgia, migraines, and a flare up of malaria returned after I had one of many endometriosis surgeries.

At the time, I did not have health insurance, and in Kentucky, a single woman without children could not get Medicaid. The main suggestion for my condition was the Lupron shot, which cost $700 over the internet through a Canadian pharmacy, the only possible way I could afford it.

It would put me into early menopause, which I really did not want. The shot would only last six months, and then I would have to come up with another solution.

All of this was overwhelming. Worst of all, I had to see about 15 gynecologists and make endless ER visits with uncontrolled pain, before finally someone suggested a pelvic pain specialist to me. He was the first person to tell me that this was not normal. Most every doctor before him had told me it was normal to have some degree of “female pain.”

In the days and months that passed, I tried to hold onto my job as a professor in Cincinnati, which was not a short commute. I was put on so many different medications (hormones, steroids, tricyclic antidepressants, fibro medications, antidepressants, benzodiazepines, pain meds, NSAIDs, the list goes on) that I found out the hard way that I am allergic to a lot of them!

My own doctor told me to lie to the government and say I was pregnant, so I could get Medicaid, and then say I had a miscarriage and get the Lupron shot. He also told me it was time to stop working. I cried to him. I cried to my mother. I cried to myself.

Meanwhile, I was having so many different reactions from the medications, I would be up all night, muscles twitching, grinding my teeth, restless legs kicking out of control. Every day, I woke up expecting to feel better, only to be disappointed. I would be so tired I could sleep for days. My entire body and mind were highly agitated to the extreme.

I did not yet grasp the concept of chronic. I knew the word by definition, but had no idea what it meant as it applied to my life.

Now, after endless doctor visits and hospitalizations, I am doing better. I am not better physically, in fact I have FAR more problems and diagnoses than I did. But, I’ve become a medical research specialist, and have been lucky enough to be affiliated with numerous pain organizations, support and information groups. I’ve started speaking out and advocating, which gives me strength. I’ve married a kind, supportive, understanding, empathetic, and wonderful man.

I have a handful of doctors I trust, and one -- my pain doctor, who I’ve only been with for a few months -- is an absolute angel who actually cares about my pain.

I am a work in progress, but I know I am making progress, and that’s what counts.

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.

Will CDC Opioid Guidelines Help Reduce Overdoses?

By Lynn Webster, MD, Guest Columnist

Politicians and some government officials tell us that the new CDC opioid guidelines will reduce deaths due to overdoses. But, based on the evidence we’ve seen so far, that is unlikely.

The latest CDC report shows a continual increase in opioid-related overdose deaths despite about a 25% decrease in the number of opioids prescribed.  This data demonstrates that an absolute reduction in opioid prescribing hasn’t resulted in the intended outcome – so far, at least. It may be counter-intuitive, but I think you’ll understand why in a moment.

The problem is more complex than the lawmakers, CDC, and regulators would have us believe. Simply reducing the amount of opioids prescribed will not necessarily affect overdose death rates as you might expect. In fact, it might do just the opposite.

What happens is that, when we reduce the amount of opioids that are prescribed, we force many of those with opioid addictions to switch to illegal opioids such as heroin and synthetic fentanyl, which are far more dangerous than prescription opioids.

If the amount of opioid prescribing were reduced dramatically, it would likely reduce the number of deaths from prescription opioids. But there would almost certainly be a significant increase in abuse of other drugs. That could result in more overdoses than we’re seeing now. We’ve already seen more deaths due to the increased use of heroin, but heroin is only one of many illegal drugs that can be abused.

Reducing the supply side of the addiction problem does not address the demand for opioids, nor does it help address the needs of people with the disease of addiction.

Of course, additional “collateral harm” can occur with people in pain who benefit from opioids, and it is unacceptable to any person with compassion. Denying prescriptions to people who have been benefiting from opioids is a misguided attempt to save the lives of people with opioid addictions at the expense of people with pain.

People with pain will suffer, and that suffering won’t save the lives of people with addictions who turn to illegal substances. Additionally, in all likelihood, we will see an increase in suicides from people who just cannot live with their level of pain.

There are about 104 suicides per day (compared to 44 opioid-related overdoses per day). In my opinion, intractable pain is a contributing factor in many of these suicides. I suspect that, as we see more and more people denied opioids for their pain, we will see an increase in the number of suicides. I base this on my experience of seeing many patients commit suicide in my practice despite having access to all of the available treatments.

Severe pain is not always compatible with choosing to live.

Reducing deaths related to over-prescribing opioids would be a good thing and must be a priority. But, if we want to reduce the amount of opioids prescribed for people in pain, then we must provide them another, safer way to handle their pain.

Trading opioid-related deaths for either death related to illegal drugs or to suicides because of pain, is not an acceptable solution. We need something better to offer people in pain, and we need it soon.

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.

Don't Flinch From Prescribing Pain Medications

By Forest Tennant, MD, Guest Columnist

By now chronic pain patients and practitioners are well aware of the new Center for Disease Control and Prevention (CDC) “Guidelines for Opioids for Chronic Pain” released on March 15, 2016. Although these guidelines have been, and will continue to be, strongly criticized for the process by which they were created, they are now published.

One of the often stated goals of CDC, despite widespread skepticism from many pain specialists, is that they did not want to limit access to pain care. Let’s take them at their word.

A major “bone of contention” regarding the guidelines is the recommendation that a daily dose of opioid should seldom go over 90 mg equivalents of morphine a day. In the CDC’s words:

“Clinicians should use caution when prescribing opioids at any dosage, should carefully reassess evidence of individual benefits and risks when increasing dosage to 50 morphine milligram equivalents (MME) or more per day, and should avoid increasing dosage to 90 MME or more per day or carefully justify a decision to titrate dosage to 90 MME or more per day.”

Thankfully, few chronic pain patients require more than 90 MME for pain management. Be alert, however, to the fact that 90 MME in the guidelines is not a maximum ceiling dose but a “trigger” or “call” for a medical-necessity evaluation, including a possible consultation or referral to a pain specialist.

My personal objection about all the new opioid prescribing guidelines, including CDC’s, is that they seem to want all patients on high-dose opioids to be managed by pain specialists rather than primary care physicians (PCPs).

Unfortunately we don’t have enough pain specialists to medically manage these legitimate, suffering patients who can’t function or leave the couch without an opioid dosage above 90 MME.

While the intent of the CDC to have the most serious pain patients managed strictly by pain specialists may be laudable, this won’t solve our nation’s epidemic of untreated and undertreated chronic pain. Incidentally, the new guidelines rightfully mention all the risks of high-dose opioids, such as addiction, diversion, and overdose; but they wrongfully fail to mention all the serious, life-shortening, and physiologic impairments that are the risks of undertreated, severe, chronic pain.

Sadly, without opioids, some of these unfortunate individuals will suffer immense physical dysfunction, endocrine failure (see Hormone Testing and Replacement), cardiovascular collapse, immune dysfunction, dementia, and premature death.

This memo is a plea to not discharge severe pain patients who are currently taking over 90 MME or avoid and deny patients who may need this level of opioid in the future. Be aware that the CDC guidelines do not prohibit dosages over 90 MME—what they rightly recommend is that physicians do an assessment and document medical necessity for dosages above that level.

Here are my personal practice policies and recommendations for dealing with past, current, and future patients who require over 90 MME:

The pain practitioner has to clearly state, in the patient’s chart, that the patient has severe chronic pain due to a specific underlying cause. For a patient to receive high-dosages of opioids, the physician must obtain and document the history, relevant physical exam, laboratory data, informed consent, and past records of treatments that have been tried.

Opioids should not be prescribed in isolation. Rather than just continuing to increase the dose, the physician needs to revisit what other modalities are being used or have been tried. These include: non-opioid medications such as an anticonvulsant if the pain has neuropathic elements, (being certain to titrate up to an effective dose); a topical medication such as Lidoderm patch, Voltaren gel, etc.; a physical therapist-guided home exercise program and other physical activities, including massage; consultation with an interventionist if appropriate; assessment and treatment of co-occurring anxiety or depression.

The new guidelines, in my opinion, could worsen a growing problem of access to medication. Already, in some locales, patients can’t obtain prescriptions and insurance companies don’t want to pay for opioids (or much else!!). If patients need a high, costly opioid dosage, they must personally determine the limits of their insurance coverage and identify pharmacies that will supply opioid medications.

We physicians can help but none of us has the time or influence to help every pain patient with his or her personal supply of medication and insurance issues. Simply stated, a patient must be an active rather than traditional, passive patient: pain patients must now join advocacy groups and begin to lobby for their right to obtain opioids and avoid an agonizing existence and premature death.

Millions of chronic pain patients now take opioids responsibly and constructively. While opioids aren’t for everybody, many pain patients who are taking high-dose opioids have enhanced their overall health, achieved a decent quality of life, and have likely extended their life span. These patients don’t abuse, divert, or overdose on their opioids, and they don’t develop hyperalgesia or the need to continually escalate their dosage. Isn’t it time we pay as much attention to these worthy folks as those who non-comply, abuse, and overdose?

Dr. Forest Tennant is pain management specialist in West Covina, California who has treated chronic pain patients for over 40 years. He has authored over 300 scientific articles and books, and is Editor Emeritus of Practical Pain Management.

This column is republished with permission by Practical Pain Management, which featured the opinions of several other practitioners on the CDC guidelines this month. You can see them all 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.

Pain and Addiction Should Be Treated Separately

By Emily Ullrich, Columnist

Once again, the lack of humanity, honesty, and desire to provide quality pain care to patients on the part of doctors, hospitals, and medical and government organizations has astounded me.

Andrew Kolodny, MD, the founder and Executive Director of Physicians for Responsible Opioid Prescribing (PROP), whose name seems to be six degrees of separation from all movements to thwart proper pain care, has submitted a petition asking Medicare to stop requiring hospitals to survey patients about the quality of their pain management.

A group of U.S. senators has gone even further, introducing the PROP Act in Congress, which would prevent Medicare by law from making "any assessments" of pain in hospitalized patients.

As I and others have written, pain is not merely discomfort. It is unhealthy and can even be life-threatening. If a patient is left in severe, unattended pain during a hospital stay, their acute pain can become chronic, triggering a host of other medical problems, such as high blood pressure, impaired immune function, ulcers, rashes, anxiety and depression. So, reporting one’s pain care while hospitalized is essential to the outcome of healing.

But, according to Kolodny and others who signed his petition, asking patients about their pain care leads to “dangerous pain control practices” and “aggressive opioid use.”

My question is, since patient surveys have contained pain evaluating questions for years, where is the evidence that doctors have over-medicated patients so their hospitals will have satisfactory survey ratings?

My guess is there is none. I have been hospitalized and suffered untreated or undertreated pain many times. I not only filled out surveys, but called hospital administrators, wrote the Joint Commission for hospital accreditation, and more, and STILL received sub-par pain care from doctors.

I am not alone. A recent survey of over 1,200 patients by Pain News Network and the International Pain Foundation found that over half rated the quality of their pain care in hospitals as either poor or very poor.

My next question is why doesn’t Kolodny want people to know about our pain? I suspect I know the answer.

As mentioned earlier, Kolodny can be traced back to nearly every movement to intervene in the proper medication of pain patients. In addition to running PROP, he is chief medical officer for the addiction treatment chain Phoenix House, and seemingly has an elaborate plan to have every patient on opioids be treated as an “addict.”  

This brings me to one final question. Why doesn’t any major American media outlet look into the conspicuous ulterior motives of Kolodny, PROP and Phoenix House? I am not much on conspiracy theories, but at this point I am compelled to say there might be something there, but our government and society are already so brainwashed to associate pain with addiction that no media outlet will touch it. Not to mention the political funding and special interest groups that also have a stake in this.

It all boils down to money. Healthcare in this country is treating pain on a financial hierarchy. The Obama administration has bought into the CDC guidelines on opioid prescribing, and the passing of the PROP Act will only further the notion that pain and addiction are one in the same.

Despite what we are being told, pain and addiction are two different issues, which need to be addressed separately. If this havoc wreaking discrimination continues, there will be no such thing as pain care left in this country.

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.

Learning Mindfulness and a Positive Attitude

By Barby Ingle, Columnist

Mental health can be disrupted when living with chronic pain. Anxiety, depression, isolation, and feelings of hopelessness and helplessness can increase to dangerous levels. Life can become overwhelming -- particularly for people who have been suffering with chronic pain for a long period of time. The idea of living with this horrible disease with no cure is astounding.

When my chronic pain started doctors often told me, “Just do this and you will be okay.” I would build up my hopes and follow their directions. But when I did not get better, I came crashing down and so did life around me.

When I finally realized there was no cure for my chronic pain and that my future would include pain on a daily basis, I began to have dark thoughts. I went through a grieving process in the course of coming to grips with my new reality. It is hard for many pain sufferers to accept their changing life, and the loss of independence and function.

It is very important for you and your family to recognize the symptoms of diminished emotional well-being and take action or you may end up at risk of suicide. There are going to be good and bad days, and if this is a bad day for you, remember to focus on the good days, good feelings and positive past and future experiences.

It was when I began looking for solutions, and displayed a positive attitude, self-esteem and confidence, that I began to attract other people who wanted to help me accomplish my needs and goals. Be sure to surround yourself with a team that is on your side, or you will be in a fight in which you will have trouble winning.

Creating a positive attitude starts with being inspired. You can begin by finding new interests and hobbies you can enjoy. A few suggestions are joining a non-profit cause, solving puzzles, writing a journal, joining or starting a support group, or even starting a blog. Creating a purpose can assist with your self-esteem and confidence.

I have learned that every person has a value no matter how big or small they seem. Believing in yourself and in your abilities, choosing happiness and thinking creatively is good motivation when it comes to accomplishing your goals. Learn to expect success when you are going through your daily activities. It might take you longer or you may need to use more constructive thinking to achieve success, but it is possible. 

There are great benefits to having a positive attitude, especially when things are not going your way. Staying optimistic will give you more energy, happiness and lower your pain levels. Success is achieved faster and more easily through positive thinking, and it will inspire and motivate you and others. I have found that when I am letting the pain get the better of me, it comes across to others as disrespect and brings those around me down.

No matter the challenges of today, they will pass, and will not seem as bad as time moves on. Challenges often turn out to be a bump that looked like a mountain at the time. You can be mentally positive and happy even when there are large obstacles to overcome.

No person or thing can make you happy and positive. Choosing to be happy starts with mindfulness.  

You can learn about mindfulness and moving beyond psychological suffering in a free two-part webinar I’ll be hosting, featuring Dr. Melissa Geraghty on April 28 and Dr. Karen Cassiday on May 13.  You can register for the webinars and learn more about treatments for anxiety and depression by clicking here.

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 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.

Pain Companion: When Pain Hijacks Your Brain

By Sarah Anne Shockley, Columnist

I had a great inspiration for this article a couple of weeks ago and immediately forgot what it was. I exhausted myself, uselessly racking my brain for the idea I’d had. What was it I thought was so perfect to write for Pain News Network?

Several days went by with me trying to find the elusive idea. I couldn’t even figure out what it related to. It was as if it had completely left the universe and was utterly irretrievable. Gone without a trace.

Ever feel like that?

Studies have shown that chronic pain affects the brain, but most of us living with chronic pain don’t need researchers to tell us that. We live with brains that don’t seem to be firing on all cylinders every day. I don’t know if there is an official term for it, so I’m just calling it “Pain Brain.”

In this and my next column, I’ll discuss some of the ways in which Pain Brain affects our ability to cogitate -- and some practical ways I’ve found to live with it a little more gracefully and even to coax the brain back online.

Dealing with Blank Spaces        

Do you find yourself in the middle of a sentence and can’t remember what you were talking about? Sometimes can’t come up with the words for even the most common items like chair, book, pen? 

We worry that we might be getting Alzheimer’s and sometimes find ourselves very embarrassed when, in the midst of telling someone something important, our brains simply turn off.

We’re left with our mouths hanging open in mid-sentence, whatever we were just talking about an utter mystery to us. We draw a complete blank. Sometimes it’s just a word, but often it’s the whole concept. Just gone. This can be extremely disconcerting.                                    

I find, particularly when I’m tired, that I’m creating sentences with a whole lot of blank spaces in them. “Can you hand me the... the... the... the... you know, I mean, uh... the… the... the.....” You’ve probably done this too.            

Stop. Breathe. Relax. Laugh. Choose another word. Or just let it go and carry on without that word or even that idea. It’s not that your brain is dying, you’re in pain.            

I’ve found that it’s usually not all that helpful to exert a lot of energy to try and recapture the word I lost. I’ve found that my efforts usually don’t make a bit of difference. I can’t conjure up that exact word or thought no matter how hard I try - and I just wear myself out and get flustered.                   

Pushing your brain to get back into gear creates tension, and you don’t need any more of that. Trying to find the exact word leaves a longer silence in your conversation, and you get the deer-in-the-headlights look, and that’s when you begin to feel uncomfortable and embarrassed. You want to say, I’m not really stupid or senile or easily distracted, I used to be able to converse with the best of them!                   

Instead, just move on with the conversation. Usually, sooner or later, the words you need pop back in. Sometimes much later. Sometimes in the middle of the night. But that’s okay. If we can just be easy with it, it’s not that big of a deal. It’s usually more disconcerting for us than the person we’re talking with.

Dealing with Brain Freeze

There are times, however, when it’s more than a particular word that’s missing. For me, it’s often a total brain freeze. Everything comes to a screeching halt, usually in mid-sentence. I have no idea what I was just saying, what the topic of the conversation was, or what direction I was headed in.                  

It’s pretty strange, because you don’t lose the power of speech, you just have no idea what you’re talking about anymore. It’s like the part of your brain dealing with that specific subject goes on a coffee break in the middle of a sentence, leaving you kind of stunned by its complete lack of presence.

For friends and family members, you can make up a code word or phrase for when you’re feeling disconnected from your own brain. I often just say, Sorry, my brain just stopped. It’s short and to the point, and they’ve learned what it means. They either remind me of what we were talking about, or we move onto something else.                   

For other people who don’t know your situation, and if you find yourself embarrassed by your own stupefaction, you might try just changing the topic. It’s really strange, but the brain seems to be able to go somewhere else and work relatively well, just not where you wanted it to go at the moment.

You can also distract other people’s attention from your sudden silence by asking them a direct question such as, What were you saying a moment ago? Or simply, What do you think? If they have something they have to respond to, it usually diverts their attention from your blank stare.

If you refer to what they were saying indirectly, without having to remember exactly what it was they actually said, they will often fill in the blanks for you and help you back on track -- without you having to explain that your brain just stopped.

Living with Pain Brain can be challenging, but in my experience, those of us who struggle with it notice the blank spaces and lost words much more than anyone we’re conversing with.    

In my next column, we’ll talk about memory loss and lowered capacity to cogitate. I’ll have some suggestions for working with them as well.                                

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.

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.