A Pain Poem: Configurations of Mourning

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“Configurations of Mourning”

By Angelika Byczkowski

I mourn

Passion confined,

Freedom now curtailed,

Crammed into an angry knot.

No regrets for having lived to excess.

Desire's wide and glorious arc,

Stunted and diminished,

Trapped inside

My pain.
 

I mourn Desire's wide and glorious arc,

Passion confined, Stunted and diminished,

Freedom now curtailed, Trapped inside

My pain. Crammed into an angry knot.

No regrets for having lived to excess.
 

I mourn My pain.

Passion confined, Trapped inside,

Freedom now curtailed, Stunted and diminished

Desire's wide and glorious arc, Crammed into an angry knot.

No regrets for having lived to excess.
 

My pain,

I mourn

Trapped inside

Passion confined,

Stunted and diminished,

Freedom now curtailed,

Desire's wide and glorious arc,

Crammed into an angry knot.

No regrets for having lived to excess.

 

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome (EDS) 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 writing about chronic pain, EDS, and fibromyalgia at EDS Info. Angelika’s essays and poems have been published in The New York Times and several healthcare blogs.

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

AMA Defends Dropping Pain as Vital Sign

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(Editor’s note: Last week we published a story on the American Medical Association’s decision to support the removal of pain as a “fifth vital sign” in professional medical standards – a move that some believe will make it harder for pain patients to be properly diagnosed and treated. Patrice Harris, MD, Chair of the AMA’s Board of Trustees, sent us the following letter objecting to how the AMA’s vital sign policy was characterized by PNN.)

By Patrice A. Harris, MD, Guest Columnist

The American Medical Association (AMA) unequivocally supports a patient’s right to receive the highest level of compassionate, comprehensive care for his or her pain.  It is unfortunate that the recent actions at the AMA House of Delegates were painted as anti-patient (“AMA Drops Pain as Vital Sign”), when the actual debate was focused entirely on how to ensure physicians have the necessary tools to deliver optimal care to our patients. 

Reducing the stigma of pain and advocating for comprehensive pain care are key recommendations from the AMA Task Force to Reduce Opioid Abuse – part of our multifactorial plan to ensure that balanced policies are in place to ensure patient’s access to care and promote the best evidence-based pain management practices, while reversing the nation’s opioid misuse, diversion, overdose and death epidemic.

When called for by a physician’s clinical judgment, this includes the use of opioid analgesics as a potential component of individual treatment plans.

Contrary to the claims in the article, however, our new policies complement and further our longstanding advocacy that emphasize the importance of treating each patient as an individual and tailoring care for that individual.

PATRICE HARRIS, MD

Pain satisfaction surveys, physician satisfaction surveys, even the Joint Commission’s Pain Care standards have not been shown to result in comprehensive improvements in pain treatment or protocols, or improved outcomes, but are clearly motivating forces for opioid prescribing. 

Patients with chronic pain deserve to benefit from the research and scientific approaches as envisioned by the National Pain Strategy, which the AMA strongly supports.  Not a single physician said, suggested, or hinted that anyone should “stop asking patients about their pain” as your recent article suggested.  Perpetrating this baseless, stigmatizing claim does your readers a tremendous disservice and does not reflect the opinions or practice of the nation’s physicians. 

We are well-aware that efforts to reduce the supply of opioids in the United States, without due consideration for unintended consequences and impact on chronic pain patients, have taken firm hold, and that many such patients have experienced disruption in their care and suffered. Many physicians at the AMA meeting decried the stigma that their patients experience. Others highlighted the audits and investigations by law enforcement among their colleagues.  And many noted the importance of treating all physical, psychosocial and behavioral aspects of pain. 

Furthermore, all discussed the importance of effective, evidence-based care, including the fact that vital signs are those that can be objectively measured and quantified. Identifying, treating and managing pain is central to medical practice, but it is not a readily quantifiable physiologic vital sign.  

We recognize that the pendulum has clearly swung too far. We know that the stigma of pain and opioid use has become pervasive, and we believe physicians and patient advocates must work together to restore balance.  But we can’t ignore the fear and stigma that pervades our society – and affects physicians and other health care professionals. We see (and experience) the increased scrutiny by law enforcement and government regulators.

In response, some physicians no longer treat chronic pain or prescribe opioids. But there are committed physicians in every city, town and state who provide the type of compassionate care that our patients need and deserve.  There are many examples of physicians doing all that is necessary to provide the type of complex, thoughtful care that chronic pain patients need. That is the vision we have for pain care in the United States.

We will, always stand up and speak out in support of patients who are in pain. We have done this countless times in Congress, with our state and specialty society colleagues, in front of the National Association of Counties, National Conference of Insurance Legislators, National Governors Association and many other leading organizations. 

We know all too well that pain is the number one reason patients come to us. We will continue to seek all avenues to provide the care our patients need – whether pharmacologic or non-pharmacologic – and insist that insurers cover the multimodal therapies required for effective management of chronic pain. 

The nation’s opioid misuse, overdose and death epidemic has harmed far too many, and the AMA is committed to working to ensure that patients with pain are not among those who must now become innocent bystanders in the regulatory response to this public health epidemic. To suggest anything less is to ignore the body of our advocacy and the mission that is central to our proud history.

Patrice A. Harris, MD, is Chair of the AMA Board of Trustees and Chair of the AMA’s Task Force to Reduce Opioid Abuse. A practicing psychiatrist based in Atlanta, Dr. Harris has served on the board of the American Psychiatric Association, as President of the Georgia Psychiatric Physicians Association and as Director of Health Services for Fulton County, GA.

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

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

Pain Protestors: 5 Simple Ways to Stand Up

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By Pat Akerberg, Columnist

It frustrates me that there’s such a huge gap between what I’d like to do and what I can actually do to protest how pain care has gone amok. 

The truth is I can’t talk without triggering unmerciful pain.  I can’t make lots of phone calls or present to audiences or groups anymore.  I can’t march, run or walk for any distance now.  Thanks to debilitating chronic pain, I can’t reliably commit my energies to much more than the daily challenges I face. 

Maybe you’re in the same place too? 

As discouraged underdogs, we want to change the lopsided fervor that’s trumping our critical need for safe and humane advancements in pain care.

I wish we could lead the charge, but in reality our compromised bodies often can’t keep up with what that requires. Starting from scratch is tempting, but that’s at cross-purposes with our limited capacities.    

Then I remember “the butterfly effect,” born out of physics and chaos theory.  It refers to a cumulatively large effect that a very small force may produce in a larger system over a period of time.  It postulates how the fluttering of a butterfly's wings in one part of the world may set off currents that will grow into a hurricane in another part of it.

We can’t predict or know when there will be enough pressure, conspiring events or cumulative conditions to bring about the butterfly effect for us.  But progress requires active involvement.

We have strength in numbers, but some patient advocates have called out pain sufferers, questioning where our support and voices of protest have been thus far.  That’s a fairly untapped opportunity.

If we want pain reform, it will take a critical mass of us calling for it.  Pragmatically, we can help build momentum and heighten the pressure for change quicker by supporting and working with current pain advocacy groups.

We have literally dozens of advocacy organizations, but ironically they lack organization.  Each represents a piece of the broader issue -- yet their efforts haven’t coalesced enough around a single goal or goals to gain substantial traction.

If you’re wondering what part you can play or where to put your limited energies, let’s look at some current opportunities.

Step #1

The oldest patient advocacy group, the American Chronic Pain Association, had a seat on a CDC advisory committee when the opioid prescribing guidelines were created.  But somehow that opportunity for active influence was reduced to a complicit check the box activity.

What can we do to call for better representation from such pain advocacy groups?  The well articulated comments that we write among ourselves could be leveraged to that end.  Copy, paste and send them to all national pain advocacy groups, starting with ACPA. Many of these organizations and their e-mail addresses are available by clicking here.  

Get involved.  Raise your concerns.  Urge all of their leaders to rally behind one unifying message for impact.  Ask them to recruit a spokesperson to give pain a face/voice (celebrity, athlete, or public/professional figure), devise ramped-up media and funding strategies, and enlist savvy lobbyists and lawyers.

If each of us would send out 5 letters, e-mails, or make 5 phone calls a week to a different advocacy group each week, we’d reach them all in just 8 weeks. 

Step #2

Have you heard of the LifeBOAT Act? Its legislation that would tax opioid pain medications, introduced by Sen. Joe Manchin (D) of West Virginia, and co-sponsored by Democratic Senators Amy Klobuchar of Minnesota, Jeanne Shaheen of New Hampshire, Heidi Heitkamp of North Dakota, and Tammy Baldwin of Wisconsin, along with one independent, Angus King of Maine.

The legislation is a reverse Robin Hood version of robbery.  Lacking conscience, the LifeBOAT Act would take money from pain patients by punishing them for their medical misfortune.  In turn, an estimated $2 billion of our tax dollars would be given to favored addiction treatment centers to treat opioid addicts.

If you feel strongly about the injustice of this tax, email or call the senators’ offices with your reasoned, opposing comments:

Step #3

The American Medical Association (AMA) recently decided to pass the hot potato by voting in favor of efforts to remove pain as a vital sign in professional medical standards, as well as disconnecting patient satisfaction scores from questions involving pain care in hospitals.

If this setback for pain sufferers pushes your buttons, you can call the AMA at (800) 621-8335 and let them know how you fell.

Step #4

September is National Pain Month, a good time to contact your local media and get them to cover our side of the pain story.  Press kits are readily available from some advocacy groups for this purpose.

Step #5

Our small efforts can quicken the overall cumulative effect, while giving us a personal and purposeful outlet.  A few more examples include:

  • Join advocacy and social media groups (like Facebook) to understand their missions and volunteer for their initiatives
  • Urge advocacy groups to get more media coverage of our side of the pain/opioid story
  • Endorsing petitions sent out on our behalf
  • Spreading the word and soliciting the help of family and friends

The Scottish writer W. H. Murray wrote this about the power of commitment: 

“Until one is committed, there is hesitancy, the chance to draw back, always ineffectiveness. Concerning all acts of initiative (and creation) there is one elementary truth, the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then Providence moves too. All sorts of things occur to help one that would never otherwise have occurred.”

By making a personal commitment on some level, each of us can contribute in ways that our physical limitations will allow. 

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

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

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

Pain Care Shouldn’t Be Political Theater

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By Richard Oberg, MD, Guest Columnist

The current hysteria over opioid pain medication is, without a doubt, the most unbelievable and difficult situation for patients I've ever seen in my 30 years of practice. With an increasing number of deaths due to overdose, the message has become that opioid medication is the problem. 

Healthy people, including healthy physicians, don't seem to believe chronic pain really exists to the degree that it does. Add in media hysteria with gross misrepresentation of the facts, often-cited CDC propaganda, and you have a recipe for disaster: addiction models applied to chronic pain patients.

Everyone's favorite defense mechanism – projection -- is overused constantly and many healthy people really think if they had chronic pain they'd somehow handle it differently or “beat it” which is nonsense.

Empathy is not a learned skill, nor is it widely prevalent in the population, including the majority of physicians. You feel it every time you see that look of disbelief from anyone, including physicians, regarding your chronic painful illness. Skepticism overrides compassion.  This attitude in the current climate has led to a crisis for patients.

At age 39, before I was diagnosed with psoriatic arthritis and eventually late stage complications of spondylitis and neuropathy, I was a multi-mile runner and very active member of our large hospital staff. Then suddenly every step was like walking on broken glass, aching everywhere with flu-like symptoms, and getting maybe two hours of sleep per night.

I saw multiple colleagues who'd give me a pat on the back and tell me to “hang in there” as I was heading for a meltdown.  Instead of a rheumatologist, I was sent to a psychiatrist.  Even after I got a definitive diagnosis, everyone still just chose to ignore it.

Sound familiar?

RICHARD OBERG, MD

I finally found an “old school” internist, one of the few in our area willing to treat chronic pain, who convinced me to try opioid medication cautiously, despite my reservations.  Like many people, I thought they'd make me fuzzy headed (bad for a diagnostic pathologist spending 8 hours under a microscope), but the opposite happened. Suddenly I was back at a tolerable pain level and able to sleep at night again. I’ll never forget how compassionate he was.

Biologic drugs such as Enbrel, which were new then, helped a lot for maybe 12 years. Over time they can become less effective for many patients. I became severely allergic to Remicade (anaphylactic reaction) and all other biologic/systemic medications also ceased to do anything, including Rituxan, which is for rheumatoid arthritis and B-cell lymphoma. I was desperate to continue working and was only able to with opioid medication.

Opioid Propaganda

So here's our dilemma as pain patients: we have a major federal agency (CDC) peddling “addictionologist” propaganda on a massive scale and investigative journalism no longer exists. The news media is no longer the fourth branch of government, but merely a vehicle for their propaganda.

Our physicians, despite being the highest paid in the world in the most expensive healthcare system in the world, have signed onto this -- not wanting any scrutiny whatsoever from state or federal regulators. They won't script in these “militarized” situations, and are either risk averse or co-dependent (the latter is why they want to drop the pain scale). Most are going along with the CDC because they don't want the extra trouble and have abandoned patient responsibility entirely, going for the low hanging fruit of more routine healthcare issues instead.

We have a supply and demand situation working against us with too few providers, an abundance of chronic pain patients, and pills that aren't as profitable as procedures. This varies from state to state and even within states, but is rapidly spreading. Physicians obviously caused part of the problem by over-prescribing, but they have the money and power, and are now just walking away from it all. There is a deafening silence from physicians, even when they know their patients are being abused.

In many states, like Tennessee where I live, physicians run everything. State officials passed tort reform, so lawyers won't take medical cases anymore (we tried and know firsthand).  Physicians own our state malpractice insurer, State Volunteer Mutual, which brags every year about malpractice premium refunds due to a decreased numbers of lawsuits. It's not because our state has a phenomenal group of physicians, it's just that the bar for a lawsuit is so high (like death of someone young) there are very few of them.

Within relatively few years (partly due to addictionologists like Dr. Andrew Kolodny having an outsized voice at the CDC) the conversation went from the “epidemic” of overdose deaths (which it never really was) to “opioids don't work for chronic pain” -- despite the fact that there are no good studies to support that because they really haven't been done.

They just say it and the news media repeats it, much like Dr. Sanjay Gupta, who stated on CNN’s “Prescription Addiction: Made in the USA” that overdoses were the #1 cause of preventable deaths in the Unites States. 

Sorry Sanjay, not even close. The CDC’s own statistics state that smoking and alcohol are the leading causes, with about 480,000 people dying every year – 25 times higher than the alleged 19,000 dying from prescription opioid medications.

How does this blatant propaganda get on CNN and what makes Sanjay Gupta an expert?

The ridiculous Consumer Reports cover story, The Dangers of Painkillers, also misused information supplied by the CDC. I've had a running email conversation with someone there for over a year asking why the bogus misuse of data - and got no answers of course.

Perhaps one of the most abominable statistical misuses by the CDC is confirmation bias, where they cherry pick data to “confirm” what they want to peddle, while ignoring other data, like the vast majority of pain patients doing well with opioid medication and most not having addiction issues.

Their argument simply doesn't work. In the 1990’s, the first decade of “massive” opioid prescribing that media outlets love to cite, there was no similar increase in complications caused by the number of “highly addictive” pills being prescribed. Then we had the 2008 financial meltdown, society changed, drug addiction became a prominent issue, and suddenly people were dying from too many pills.

Finally, the artificial breakdown of “cancer” pain vs. “non-cancer” pain is complete nonsense and always has been. The final common denominator of pain is pain, and cancer is merely one of many etiologies that can cause it.

Incidentally, the word “cancer” is pretty meaningless, especially to a pathologist like me. Large numbers of physicians and virtually all lay people have little understanding of the pathophysiologic processes pathologists are trained to understand.  Most things called “cancer” aren’t chronically painful and many autoimmune diseases can be much more painful than cancer.

Ironically, as cancer treatments have become better (such as those for breast cancer) and with longer survival times, many cancer patients are developing chronic pain conditions that have nothing to do with their cancer.

Do they get special treatment even if they have a good long-term prognosis?

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

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

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

Tips on Living with POTS

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By Ellen Lenox Smith, Columnist

I suddenly had my life come to a halt when “POTS” hit me in my sixties. Some of you may not be familiar with what that is.

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a condition that affects the nervous system, causing light-headedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and sometimes even death.

According to Dysautonomia International,  between as many as three million Americans have some form of dysautonomia, and over 70 million around the world.

I had always lived with low blood pressure, but as the instability of my neck, due to Ehlers-Danlos syndrome progressed, I suddenly felt that standing or even just sitting up in bed might cause me to faint.

I reported the symptoms to my cardiologist, who worked with me on finding treatments, but that journey was not a simple one.

The first thing he encouraged me to do was to salt my food, to keep my blood pressure elevated. When that was not enough, he prescribed salt tablets.

Suddenly, I started gaining weight. There was no evidence of swelling in the extremities, the weight retention for me landed in my chest. However, I continued to faint and feel horrible.  

I reported back to the doctor and was encouraged to add more salt. I got scared when I gained another nine pounds and decided to stop taking salt, assuming that was the culprit. Soon after, I passed out, was sent to the hospital, and diagnosed with congestive heart failure.

I came home after three days in the hospital and proceeded to melt out of my husband’s arms, hearing both legs snap as I fell to the ground. I woke up with terrible leg pain and now had to face two micro-fractures from the fall.  

When my cardiologist was contacted, he mentioned a medication that he thought he had prescribed for me, but I was certain he not ordered anything besides the salt. I admired his honesty in when he later admitted his mistake. He had confused me with another patient. Once I started the medication he intended for me to take, life started to return to me.

I wanted to share my story in hopes that a reader with POTS might find these tips helpful. It’s such a debilitating condition that I hate to think of anyone else suffering unnecessarily.

Here is what has helped to get my life back and blood pressure to almost normal:

1)  Sleep elevated at a 30 degree angle. You want to elevate the head of your bed under the frame, not just sleep with pillows to elevate. If you need to travel, you can take plastic containers often used by college students to elevate their beds to create storage. I use two containers on each side of the head.

2)  Keep hydrated. Drink plenty of water daily.

3)  Exercise to keep your circulation strong.

4)  My magic medication turned out to be Midodrine HCL, 5 MG tablets. Once I started taking them three times a day, I started to live with normal blood pressure! This specific medication may not be suitable for you, but there are other medications that may help. You should consult with a doctor before trying any of them.

I hope this might provide you with useful strategies to cope with POTS.  Don’t settle with being stuck in bed. Although finding the correct combination of medication takes time, I hope that it will bring some normalcy to your life.

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.

We Are Not Mad Junkies

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By Christopher Horton, Guest Columnist

I'm 57, Australian, and a member of the chronically persecuted pain sufferer's club.

My membership came with an accident during a sea rescue. I was a rescue captain for 15 years, got smashed up at sea and have had 6 laminectomies. My legs were paralyzed at first, but after several surgeries I am able to walk again, but tough going. I've had enough surgery to be frightened of anymore.

Once upon a time I thought I was immortal. I have surfed 20 foot high waves and could hold my breath for nearly 5 minutes. I was also a truck and heavy machinery mechanic, trawler fisherman, logging engineer, and rode motor bikes. Now some days my motivation is very low.

I was well known for what I did by my local doctor, but time goes by and inevitably he moved on and new doctors had to be found.

At one time I took Physeptone (methadone) with morphine, but one day due to the refusal of yet another new doctor because of me moving town, the morphine was stopped. 

It’s a crazy world where you hear the doctors say do no harm and are afraid to help us, but bend over backwards for substance abuse patients. The same problems exist over and over, even with pain specialists I have needed to see to get approval for continued supplies of medications. I just deal with more than usual pain and no problem with addiction issues.

CHRISTOPHER HORTON

My neck gets this locked up sensation, a click and then I feel faint, headache, back ache and blood pressure sky rockets so high my doctor gets this strange look on his face. Dreadful medications that have other physical effects. All these things and if another surgery could help, I don't know if I could, it scares me. I shudder at the thought of it and getting older.

I don't talk about this much it's been a long road. I'm lucky. I’ve been married for 40 years to a registered nurse. She's seen everything in her career and comes with me when I see doctors. She knows how to tell them what to do for me.

I agree 100% about abstaining from addiction but with chronic pain it becomes part of the dilemma. For the record I take no more medication now than I ever have, choosing to put up with some discomfort. I have no choice if I want to do things and not suffer too much.  I hope the medical profession can get over the stigma other people prescribe upon us. 

We are not mad junkies, just people trying to survive.

Christopher Horton lives in New South Wales, Australia.

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

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

Pain Companion: How to Release Pain

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By Sarah Anne Shockley, Columnist

In all the discussions about pain medications, various approaches to healing and alternative treatments, we don’t want to overlook a key aspect of the nature of pain.

Chronic pain is a messenger. It is here because it has something to say.

Giving pain a voice helps it, in incremental stages, to complete, release and move on.

What does it mean to give pain a voice? You may already be familiar with journaling and finding someone to tell your pain story as ways to relieve the emotional ramifications of living with chronic pain. They are excellent and I highly recommend them, but that’s not what I’m talking about here.

Rather than expressing how you feel about pain, I recommend finding ways to let pain express itself. Think of it as allowing the part of you that is experiencing physical pain to express from within the pain and as the pain.

For example: the next time you decide to journal, instead of writing about your feelings and experiences, try taking a deep breath and stepping into the pain.

I know, at first you may think, yuck, why would I step into my pain? It’s already hard enough to live with it. But bear with me.

From the experience of being within the pain, begin to write what pain wants to say. Write as if you are the pain speaking. Write about what pain feels like to be in your body, what pain wants, and what pain is trying to accomplish by being there. Don’t try to figure this out in your head. Just go into a slightly altered state of consciousness and let the words flow, even if they seem like nonsense at first.

Ask your pain questions, and let it respond. Who are you? What are you? What are you doing in my body? What do you really want? How can I help? How can I soothe? How can I heal?

If it’s difficult to step out of your thinking mind and you find yourself trying too hard to come up with answers for pain, try writing with your non-dominant hand.

The first time you express yourself as pain may feel a little strange or silly, and you may come up blank at first. Just be patient. Pain isn’t used to being listened to in this way. It might take a moment for it to register that you actually want to hear what it has to say.

Experiment with other ways to let pain express too.  Instead of journaling, you can try speaking for pain. Designate a chair in the room as pain’s chair for a moment. Then go sit in it and speak into the room as pain (or do this from bed if you aren’t mobile right now). Just let the words flow.

Pain may surprise you. It may express as very angry about being stifled all the time. Or very tender. Or confused. Or incredibly sad.

Don’t try to analyze it while it’s happening. Just let pain express as pain wants to, however that is. Right now, even though pain feels like a nasty invader, it’s living in your body and it’s a part of your experience that needs to be heard. It’s part of you expressing as pain.

Another way to express pain is to use your voice to express pain as a sound. You might want to wait until you’re alone for this one.

Again, take a breath and go into the experience of pain in your body, and then begin to hum from that place. Experiment with very high and very low pitches. Let the hum express the sound of pain. Then, if you’re feeling adventurous, let the humming morph into other sounds: moans, groans, high pitched whines, sobs, sighs -- whatever sound wants to come from the pain in your body.

It’s most freeing to just let the sounds come out in whatever form they want to take, whether loud or soft. If you’re self conscious or there are others in the house you don’t want to disturb, you can make the sounds into a pillow. Just make sure you’re listening. You are the most important person to hear the sounds of your own pain. It is a way of witnessing, validating, and releasing the pain you’re in.

Do this for as long as you want (or until the dog starts howling). If you’re musically inclined, you might want to make up a song of lament or a song of freedom. Give pain the stage for a few moments.

This may strike you as naively over simplified, but I have found throughout my pain journey that the most potent remedies for ongoing pain are very straightforward and simple. Rest often. Reduce stress and stay as calm as possible. Release held or restricted breath and allow its life-giving and healing force to move more freely through you body. And give pain a voice.

Remember, probably no single thing you do to heal, soothe, express or release your pain is going to be the whole story of your healing. Chronic pain is multi-leveled and complex. Yet all of the simple, yet profound practices we put into effect on a daily basis have a positive cumulative effect. I can testify to that.

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.

The Media’s Biased Reporting on Opioids

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By Lynn Webster, MD, Guest Columnist

Have you heard the news about hyperalgesia? “This is the idea that opioid medication, instead of calming pain, might actually make pain worse,” says Stephen Martin, MD, EdM, an Associate Professor of Family Medicine and Community Health at the University of Massachusetts Medical School, who wrote a guest post for HealthNewsReview.

In his post, he points out that media stories such as these greatly worry him:

Dr. Martin agonizes over such biased media reporting because, like me, his greatest concern is the well-being of patients. He worries that reports like these about opioids could adversely affect patients.

In conjunction with the new CDC Guidelines, these reports may increase anxiety among some patients who are able to function with their medications but now, with good reason, they may fear that their access to painkillers will be tapered or discontinued “for their own good,” because the medication might “cause addiction,” or — and this is a twist the media has recently picked up on — because the opioids could “increase pain.”

As Dr. Martin points out, “The study [the media is referencing] involved rats that had sutures tied around their sciatic nerves. The sciatic nerve was tied and the animals were left in pain for 10 days. Then, the researchers administered morphine directly to spinal cords of these rodents for 5 days.”

He concludes, “The next time a patient of mine becomes a rat, has its sciatic nerve constricted with sutures, and asks for 5 days of morphine near its spinal cord 10 days later, maybe I’ll take another look at this study. In the meantime, I’ll tell my patients to ignore the unbalanced news coverage that the research spawned. I am not saying that hyperalgesia doesn’t occur, but I don’t think it is as evident as suggested by this rat study.”

“Urgent Opioid Public Announcement!” ~ Dr. Drew Pinsky  

Then there’s Dr. Drew Pinsky‘s “urgent” public service announcement,” addressing the effects of rampant opioid addiction that has already claimed the lives of countless people across the world.” You can see it here.

The real shame is that you probably already have seen it because, as a TV personality, Dr. Drew has name recognition that encourages viewers and fans to tune in to hear his latest messages. They see him on television shows that feature his name as part of the title, and they trust him.

So when he makes a statement such as, “The United States represents 5% of the world’s population, and yet we consume 80% of the pain medication – medicine that was not designed to be used for longer than 2 weeks,” viewers tend to think that there must be something wrong with the fact that the U.S. prescribes such a high percentage of the medication.

What viewers must consider is this: there are many reasons why the U.S. has 5% of world population and consumes 80% of the opioids. The chief reason among them is people in most other areas of the world do not have access to opioids and die in tremendous pain:

  • There are billions of humans outside the U.S. who are in daily agonizing pain, many of whom can’t get any opioids to ease the pain from their cancers.
  • Even if other parts of world would provide opioids for only hospice and cancer patients, and for no other reasons, the U.S. would not consume anything close to 80% of the world’s opioids.

U.S.-based physicians may overprescribe opioids to some people, but clearly, most people in the world do not receive the benefit of opioid therapy to mitigate their suffering when they’re dying. Providing relief from intractable non cancer-related pain is not even a consideration in many other countries for economic reasons.

I hope Dr. Drew is not suggesting we move toward that position in the U.S. I refuse to believe he feels it is acceptable for hospice and cancer patients to die in excruciating pain. Dr Drew must believe that unbearable pain needs to be treated, even with opioids if no other treatment is effective.

As a celebrity journalist as well as a medical doctor, Dr. Drew has more responsibility to show leadership than others. This requires that he not promulgate spurious theories and fuel hysteria. I’d say his “urgent public service announcement” is particularly damaging  because a trusted public figure should know better than to record a message of hyperbole that could do harm.

Biased Opioid Reporting Makes for Compelling Headlines

Since media consumers already fear opioids (with good reason, especially in the wake of the opioid-related death of pop star Prince and other high profile individuals), it’s tempting for journalists to tell viewers and readers what it expects to hear, wants to hear, or most fears hearing.

So media outlets’ ratings and advertising rates increase as they feed half-truths and out-of-context headlines to the public.

Sometimes, I wonder whether the media understands the harm that its actions can cause. I am sure Dr. Pinsky, as a physician, would never want to inadvertently contribute to misinformation. Unfortunately, his public service announcement may do just that. It could hurt, rather than help, the cause that we share: to help patients.

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.

Why Doctors Don’t Do What Works

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By Barby Ingle, Columnist

Let’s examine infusion therapies. There are multiple types, including intravenous ketamine, plasma, stem cell, immunoglobulin and lidocaine.

I have tried many of these and know from personal experience that they can work. I have also been by the side of friends who have undergone infusions with great success, including some who have gone into remission.

Infusion therapy is being performed for patients with all kinds of neuropathy conditions and it helps many recipients. It is just hard to find a doctor who will perform infusions for anything outside of IV-chemotherapy for cancer patients. Why?

Right off the bat, let’s consider costs. In the case of intravenous immunoglobulin, it is very expensive to make, so insurance companies fight it a lot and that discourages doctors from offering it.

IV-lidocaine offers some relief, but is short lasting. In the case of IV-ketamine, it is an inexpensive drug and insurance companies are covering it in many cases, depending on documentation and the protocol being used.

I know that many doctors are underpaid. They are getting cutback by insurance companies and on treatment reimbursements with Medicare. Malpractice insurance rates are very high and many doctors still have thousands of dollars in student loans to pay. Those that have their own practice make less because of the overhead costs of location and staffing.

As a former business owner, I see the valid points the doctors are making. As a patient, I wish I could fix these reasons so that more patients could be helped.

Since learning about IV therapies myself back in 2007, I started asking around for names of doctors who are performing them as viable treatment option for chronic pain diseases. What I found was that the list was very small. I started asking questions of pain doctors specifically. I did not do this as “patient Barby,” but as director of the International Pain Foundation.

Some of these doctors have seen me over the past 10 years go from “wheels to heels.” They cannot believe their eyes when they see me now. Yet they still give reasons and obstacles for not wanting to offer infusion treatments.

Many have very small offices. Even at pain management and surgical facilities, the patient takes up a spot in the recovery room or infusion room for half a day. That becomes prohibitive for doctors to deal with because it cuts down the number of patients they can treat and the amount of money they can make.

In medical school, doctors have to choose a specialty. They get general studies that include a little info on this and a little on that, but unless a doctor is interested in studying the specialty that includes your condition, they may not have ever heard of it. Even if they did study your particular condition, they may have gotten only four hours of training on it.

Looking at it from the other side, doctors do have little time for treating patients, and they have required continuing education hours that they also have to fit in. Some tend to stick to classes that reflect their area of interest, so they are not getting a wide variety of knowledge that, as patients, we tend to believe occurs. I learned the hard way that doctors are not created equal. If an illness or condition is not their specialty, they do not invest in it.

When you have an IV-ketamine infusion, a certified nurse needs to be present and monitor you the entire time. He or she can’t just come and go. Taking one staff member away for four hours at a time increases a doctor’s overhead expenses. Most doctors could not survive this type of set up. They need to see more patients.

Not only are you taking vital staff away when getting an IV infusion, you are using space. If you are taking up a chair in the recovery room at a doctor’s facility for hours, the doctor is unable to fill that chair with other paying patients. Not just paying patients, but patients who also need help, just as much as you do.

When insurance companies start to compensate doctors appropriately for IV therapies, it will resolve many of these issues and more doctors will offer infusions. I pray that it becomes widespread as an option.

In 2007, I was at a medical conference where Dr. Robert Schwartzman was speaking on infusion therapy and he said, “It will soon be the standard treatment for RSD patients.”

“Soon” in medical terms can often be 8 to 10 years. It is about time that we get better access to proper and timely care.

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.

Pain Patients Need a Champion

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By Pat Akerberg, Columnist

As the national debate shines a spotlight on the opiate addiction and overdose problem, the divide widens between how the CDC/FDA/DEA and chronic pain sufferers see it. 

Is it an opiate problem alone that can be regulated or a pain management problem that needs to be addressed? The government and pain patients are both fighting to preserve life, but their vantage points on the risks and benefits of opioids are very different. 

As protectionists, our Goliath-like government agencies are reacting to tragic deaths caused by opioid overdoses with a "War on Drugs" approach. They have mobilized around a clear direction, ownership, and action plan – stringent prescribing guidelines that force physicians and pharmacists to curtail and deter patient access to these medications. 

But for millions of chronic pain sufferers, protective of their own survival, those guidelines now put them at risk of their pain being undertreated or untreated.  

Already marginalized by chronic pain, they can’t afford to lose more quality of life or the will to press on if the benefits of those medications are abruptly taken away. The human right of self-preservation and the oath to do no harm are at issue.  

Even though pain sufferers are unified in their opposition to many of these measures, without a clear direction or representation they haven't had any influence. Their input has been largely excluded by the government’s closed process, a top-down stance many view as misguided and cruel. 

With sporadic grassroots efforts, pain patients are pushing back -- sporadic because many are already overwhelmed trying to cope with their medical challenges.

When people who are affected by a blanket change push back, it’s because something was sorely missed by the change drivers.  The guidelines weren't communicated well, didn’t include input from the people affected, and minimized issues that could have many serious unintended consequences. Many in the pain community feel betrayed and abandoned.

While the David-like courage and bravery of patients moves me, I’m also one of many frustrated chronic pain sufferers concerned about making headway without a proactive approach. 

Maybe it’s time we borrow from the best change management practices used successfully in business.  These practices effectively mobilize the energies of those needed to make change happen.  Progress occurs only when several key factors are fully defined to get from “current reality” to “future state." Those critical factors involve:

  1. A clear definition of our unmet pain management needs
  2. A realistic assessment of our current pain management reality
  3. A compelling vision for future pain care  
  4. A transition plan to get there

When any one of these critical success factors falls short, no amount of reactionary rhetoric or emotional expressions from us will substitute for our own proactive pain management platform.  Our efforts to fight back will sputter up against a bureaucratic wall. 

The deficiencies in the change approach our regulators took frustrated our expectations that we’d be heard and understood, with empathy and dignity.

Expectations can backfire if they’re unrealistic.  When they operate unchecked, it means that we have assumptions, predictions, and underlying beliefs that something will happen or play out the way we hope and need them to. We’re attached to an outcome when we hold onto those expectations. 

But life isn’t perfect and systemic change doesn’t happen overnight.  Eventually we are bound to have an experience like this one in which the gap between our expectations and reality results in a disappointing thud.  A self-help quote describes that occurrence well: “expectations are the partner of disappointment.”

Trying to change their hearts and minds about us, we’ve worked to convince the regulatory, profit-seeking, and career promoting stakeholders that we’re credible and responsible, not addicts or malingerers.

But the more dramatic our attempts have been, the more we’re viewed skeptically. Taking that personally, we feel misunderstood, thrown to the wolves and without impact.  In self-defense, sufferers continue to dial up reactionary and passionate protests, hoping regulators will someday see that their guidelines don’t solve our pain management needs.  

Since hope alone isn’t a strategy, we should redirect our energies and stop giving our power away while emotionally bargaining over the legitimacy of our pain management concerns. We also need to stop seeking compassionate understanding and consideration from entities ill equipped and unlikely to offer them. 

The “recovery” community sums up that advice as, “you don’t go to a hardware store expecting to buy bread.”  Better to save our hopes for our families, friends, and support groups where the odds favor us. 

Likewise, in the context of systemic change regarding chronic pain management, our expectations have a better shot of being met by a credible coalition that represents us.  

First and foremost, a strong change initiative needs a champion who owns the challenge and drives a clear and comprehensive change management platform that sets the conditions for success.  Without that credible representation, we have no seat at the table, nor any accountability.

Our very real pain management needs present a clear role for advocacy groups to step up and represent.  There’s no shortage of would-be sponsors for us to recruit.  Pain Pathways estimates there are 21 pain advocacy groups, along with 39 other disease related advocacy groups. 

The arrow of purposeful action and accountability points to an urgent unmet need – a coalition willing to champion a change agenda that best represents our interests, including ways we can champion and support it. 

The regulatory agencies have their plan with solid representation.  Let’s face it, without our own platform we sit in pain, frustratingly sidelined.

Let’s regroup and start shopping elsewhere for bread.

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

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

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

The High Cost of Anxiety Drugs Gives Me Anxiety

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By Crystal Lindell, Columnist

I recently got a new prescription for a drug that’s supposed to help with my anxiety — which is a debilitating mix caused by opioid withdrawal and what I would call a base level of anxiety that runs through my bones.

The ironic thing about what happened is that when I went to pick up the anxiety medication, the cost of the prescription nearly gave me an anxiety attack — right there at the pharmacy.

The co-pay was $65.

It gets worse. My doctor wanted to gradually move me up on the dose, so he had ordered some 10 mg pills and some 20 mg pills. The insurance company wanted me to pay $65 for EACH dose! That’s $130. 

We need to talk about co-pays. There’s this misconception in America that if you have health insurance, then you don’t have to really worry about medical bills.

But that’s so incredibly not true. 

Listen, I wish a $65 co-pay for medication was no big deal for me. I wish I could just whip out some hundos every time I stopped in the pharmacy and throw them around like confetti, but alas, I am not a rapper or a Kardashian. 

So when my insurance company tells me that the medication I am taking is “not preferred” and thus comes with a $65 co-pay, I cry a little inside. Especially since it’s a monthly prescription.

Add in a couple other meds ($25/month) and I’m looking at $90 a month for prescriptions. That’s literally an electric bill, or four tanks of gas, or about 10 percent of my rent. 

I asked the insurance company if I could appeal the fact that it’s not their preferred medication, seeing as how I had what I thought were very valid reasons. 

1)  I had a horrific reaction to the one that is preferred, and ended up in the ER.

2)  As a response to the horrific reaction to the other drug, my doctor ran genetic testing to see which meds would work best for me, and after a lot of consideration we decided on this one.

3)  This is the medication my doctor chose.

But the insurance company was basically like, “Umm, yeah, no you can’t appeal.” Something about how they do technically cover it, so there’s nothing to appeal.

They literally tried to tell me that my doctor should just prescribe one of the preferred meds, completely ignoring the fact that my psychiatrist had literally spent hours with me talking about all the pros and cons before he decided on this one.

And then they had the audacity to act like it was no big deal. But if it’s no big deal, why don’t they pay the $65 then?

My $65 co-pay is just one small example of all the ways people with insurance can still find themselves with mountains of medical bills. There’s also the $30 co-pay for every single doctor’s appointment, and the $2,500 deductibles you run into every time you’re in the ER.

I live paycheck to paycheck, and all the medicals bills can make it hard to breathe. In fact, it’s enough to give a girl an anxiety attack.

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.

Living My Retirement in Pain

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By Marleina Hampton, Guest Columnist

At the age of 66, I never thought I would be living my retirement life in pain.

At age 13 I was diagnosed with scoliosis, a curvature of the spine. The choice was made that I would wear a cast from my collarbone to my pelvis in order to "hold" the spine straight. Surgery was not an option.

During my late 20's, my back started to bother me and by the time my 30's arrived, I was in pain after standing or sitting. When I moved to California in 1990, I started looking for ways to treat this pain that was getting steadily worse. I did physical therapy, epidurals, prolotherapy and every other office procedure known to man, without success.

In 2003 when the pain was so bad I wanted to die, I had my first back surgery, which gave me some relief. But it wasn't long before I was suffering again.

Fast forward to 2012, I relented and had spinal fusion surgery at Cedars-Sinai Medical Center. My back is now fused from T10 to S1, with two titanium rods and 20 screws.

My doctor told me that I would be on some type of pain medication for the remainder of my life. I saw several pain management doctors and finally asked my primary care provider if he would take over my pain management.

MARLEINA HAMPTON

In 2015, my husband retired and we moved to Prescott, Arizona. Little did I know that my nightmare was just beginning! I couldn't find a doctor who would accept me as a patient!  Prescott has a high number of addiction recovery homes and the pain management doctors refuse to accept appointments without a referral.

I spent weeks trying to find a doctor and was told by medical professionals that they are not comfortable having me as a patient! Just recently, I drove almost 2 hours through rain, ice, and snow to see a pain management doctor in Phoenix. I thought I would receive a higher level of care in a larger city. But when he found out that I was not a candidate for epidurals, he said he wasn't comfortable having me as a patient. That his practice did not prescribe drugs!

In tears, I called my doctors in California and they too were appalled that I was being treated this way. Never in my life did I have a problem receiving medication.

I finally found a doctor who agreed to prescribe pain medication for me. Now I go in every month to pick up my prescriptions. I was told that my doctor continues to receive emails asking him to cut down on the number of opioid prescriptions he writes. He knows what my life would be like with pain medication and said he would fight for me.

If I should be denied pain medication, I will probably join the ranks of many before me who have taken their lives because they no longer can cope with the pain. Every month I wonder if this is the month that my doctor will get tired of the battle. This is not the retirement life I had imagined.

Marleina Hampton lives in Prescott, Arizona.

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.

5 Tips on Leaving Your Career Due to Health Issues

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By Ellen Lenox Smith, Columnist

Leaving your career due to chronic pain and illness can be heartbreaking, but for some of us it’s a necessary step.

There was never a day in my life as a teacher that I didn’t love getting up and going to work, yet that career had to end due to the progression of Ehlers Danlos syndrome and sarcoidosis. I felt so lost and not sure who I would be without the career I had.

So, one day before retiring, I went for a walk at the Scituate Reservoir in Rhode Island with my dogs at the time, Corey and Carmel. I made the decision to not think about all the emotions entering my mind -- trying to push those negative thoughts away so I could de-stress. I only allowed myself to look and listen to nature.

Within minutes, I started to have words and thoughts come into my head. Before I knew it, I had to come home, sit at the computer and start writing. The first of what turned out to be over a hundred poems poured out of me. I always laugh when I share this experience, for I am not particularly into poetry.

This was the first of my eventual one hundred poems, which helped cleanse my emotions and prepare for announcing my need for retirement and a life with two progressive conditions:    

ELLEN LENOX SMITH

I Attended a Concert This Morning

It was that time to escape, to go for an adventure. We were attending a concert. All ten of our legs got into the car to begin the trip. No clues had been provided to us to prepare for what an impact this performance would have on the rest of our day.

We arrived, opened the door and got out, some of us more easily than others, and then shut the door off from life as we knew it…

It seems that we were late for the concert. It was already in progression. We knew when we arrived that we would have to follow the rules. We had to turn off everything from our lives; the cell, the TV, the radio, computer and most importantly, “the mind”.

We began to walk and quickly heard the concert. It felt loud and overwhelming at first. It felt crowded listening to it despite a lot of space provided. It was too much to hear, too much to absorb. And “the mind”, it wanted to come on, even though it knew it wasn’t invited. But it seemed to finally learn how to respect the rule.

As it cooperated, the concert began to take on a new dimension of sounds and feelings. It became soft, clearer, calmer and incredibly comforting. This concert became exceptional, being absorbed in every space of the mind and body.

And all that was needed to feel this was to just turn off everything else.

The concert never came to a close, but it was time we return to the car and journey back to home as we know and love it. But, we knew we had had an experience that gave us strength and renewal to our lives.

Corey, Carmel and Mom all took a moment to enjoy nature and listen to the truth of life. It was a concert that will never be forgotten. A lesson was learned, “turn it all off”, attend the concert of nature. It’s there for us all and is open at all times.

Looking back, I learned that writing about my emotions helped me face the changes that were happening to my life. It was a very cleansing process that I entered and I continue to do it.

Here are some tips if you are also dealing with the loss of your career:

  1. Try writing down emotions that are swirling in your head. You will gain more than you might realize with this process. Many write to the US Pain Foundation for help and I respond to them, but often I do not hear back from them. I believe this is because they’ve cleansed their emotions by just writing down their story and frustrations.
  2. Accept that you will have to redefine who you are. I was a teacher by profession, but have discovered I am still teaching, just in a different way.
  3. Remember you are not alone for many have also had to face the loss of their career. Try to find comfort in knowing this. I talk to myself and say that if they can do this, so can I!
  4. Mourn your losses. You are human and allowed to do this, but remember to move on from this loss too. You are more than your career. There are others things in life that will make you feel worthwhile and productive. It will take work to figure out what you will do next, but it is a worthwhile effort.
  5. Try to not get stuck on “Why me?” Instead, try to find a way to move on with acceptance and grace for others to learn from. I always remind myself that although my four sons are now adults, they are still observing how I handle my life, including this process of letting go and redefining. I want to be remembered by them for trying, fighting and not giving up.

I know it is heartbreaking to have to step away from a career, especially if it is one you love. But you also have to remind yourself that you have one life to live, and you need to redefine yourself and find things that will bring meaning, joy and happiness back, despite the loss.

I know this is hard to do, but the effort will pay off in the end. Despite illness, you can discover new things about yourself and have a positive impact in life. Be strong, reach out for support and may you, too, discover there is life despite your huge loss.

Ellen Lenox Smith 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.

Ellen recently published her new book, “It Hurts Like Hell!: I live with pain -- and have a good life, anyway.”

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.

Lasers Work for Fibromyalgia, But Why So Pricey?

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By Ryan Baker, Guest Columnist

I’ve had severe fibromyalgia for 14 years, and I’ve been disabled as long. Without a doubt, the pain is certainly a central issue, along with the severe fatigue, flare ups, and crashes.

It’s an absolutely miserable disease that’s intrusive and destructive. I broke commitments that really shouldn’t be broken, which put a strain on personal relationships. The pain is a level of suffering that can easily push one to insanity or worse.

I found laser therapy last October at my chiropractor’s office, where they have a $25,000 K-Laser. While it worked great, I could not get enough coverage all over my body as often as I needed, and it was just too expensive for office visits.

I was getting good results, so I dove into trying to find a laser I could use at home, and settled on a very effective unit for $2,500. Pricey, but worth the convenience of having one I could use whenever I wanted.

Since receiving the TQ Solo laser in late January, I have not taken any prescription pain pills. My hydrocodone, methocarbamol, and Klonopin, which I had whittled down long before the laser to “emergency use only” (once every 3-7 days), have gone untouched since I’ve had the laser.

I have taken 2 ibuprofens for a dehydration headache, but no other OTC meds, aside from vitamins. I take a sleep aide and blood pressure medication, that’s it.  

TQ SOLO LASER

It still astonishes me how well laser therapy works. I still suffer from fibro fog, low energy, and all of the other problems associated with fibromyalgia, but my pain levels have dropped from a constant 7-9 out of 10, to a much more tolerable 2-4. I use the laser between 20 minutes to an hour or more a day, and rather than become resistant, my body seems to respond better after getting used to treatment.

Some areas are completely free of pain at times, which hasn’t happened in 14 years, but if I stop treatment the pain returns. It’s not a cure, my fibro is still terribly limiting, but it’s an amazing treatment for the pain. The decrease in my personal suffering has been outstanding.

The laser is like an alarm clock for under active mitochondria, only stimulating the cells in need. Properly functioning tissue (not in pain) have little to no response, while damaged or inflamed tissue “wake up” and begin healing. Some areas need daily treatment, like my calves and back, while other areas can go days between treatments.

If you’re a fan of science fiction, this is the coolest thing since the smartphone made Captain Kirk’s communicator look silly.

I find the 5 hertz setting, the deepest setting, to be the most beneficial. It’s like a massage, but deeper, and there’s no pain from working tender tissue. In fact, there is very little sensation during treatment. If I can feel the treatment at all, it’s usually a mild tingle or twitch, which I consider a signal to treat more intensely.

The laser does not hurt or burn. It’s very comfortable and soothing, and treating before bed is fantastic for sleep. I don’t wake up with that stiff, poisonous feeling ache anymore.  

I began researching all sorts of red light therapy. I’ve tried several, along with some LED only therapies. I even tried a heat lamp. While the heat lamp and LED therapies felt okay, they were no match for the laser.

While searching for other light therapy devices, I found the Handy Cure. It has a striking resemblance to the TQ Solo I had purchased, but it was selling for under $600. Same frequency settings, same power, same everything. Only the handle was different, as far as I could tell.

I looked it up, and it was made by the same company that makes the TQ Solo. But why so much cheaper? Was it a knock off? Was it less potent, or somehow lower quality? I put an order in.

After using the Handy Cure side by side for weeks with the TQ Solo laser, I can’t tell any difference. It’s just as effective. I’d overpaid by $2,000. I’m not wealthy, and I assume most fibro patients aren’t either, so that hurt.

I started looking into other lasers and found the Game Day laser. It looks exactly like the Handy Cure, no doubt about it, only the labels were different. Instead of variable, 50 hertz, and 5 hertz, the menu is a simple 1, 2, and 3. It appears to me that the Game Day is simply a rebadged Handy Cure.

handy cure laser (left) and TQ solo laser(right)

You’d think the Game Day would be priced more like the Handy Cure, but it’s listed for $2,995! My jaw dropped when I saw that, but the picture became crystal clear. All of these lasers had the same manufacturer and, except for subtle differences, appear to be essentially the same products.

But one sells for under $600 and the other is marked up to nearly $3,000. Why?

I’m not against the profit motive, but I am when people are suffering and treatment is unnecessarily kept out of reach.   

One month later, I have become a distributor for the Handy Cure, making YouTube videos to bring laser therapy to the attention of fellow fibromyalgia patients. It’s been a big adjustment, but a meaningful one. I have no idea what I’m doing, I just know lasers work, and they take some of the “crazy” out of fibromyalgia.

Fibromyalgia pain is real and physical, not some form of hypochondria or mental illness. If it was, the laser would have no physical effect. But it works reliably for my pain, even when I’m particularly depressed.  

I feel vindicated, because something finally works for the pain when powerful opiates barely made a dent. It’s not in my head. 

(Editor's note: Since this article was first published, Pain News Network has been contacted by Max Kanarsky, President and CEO of Multi Radiance Medical, the maker of the Handy Cure laser. Mr. Kanarsky maintains that the "Handy Cure" featured in this article is a counterfeit reproduction of his product, is not FDA cleared, and "might present a hazard to users.")

Ryan Baker lives near Sacramento, California. You can learn more about laser therapy by visiting his website, Chronic Pain Laser.

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.

Let’s Go Crazy: Lessons Learned From Prince

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By Emily Ullrich, Columnist

As many call for Prince’s death to be a “wake up call” to America about the dangers of prescription drugs, I propose a different wake up call.

If the allegations are true, and Prince did die of an overdose, I propose that we use the messages that Prince preached and lived: messages of understanding and compassion. America needs to “wake up” to the oppression and depression that keep many chronic pain patients quiet about their conditions, and the reprehensible stigma with which this country punishes pain patients.

By now, many of us have read Lorraine Berry’s insightful piece, “Prince did not die from pain pills -- he died from chronic pain.” Perhaps the most poignant statement Berry made was, “Chronic pain kills. It killed Prince. It’s time to talk about it.”

We love to find flaws in celebrities, particularly those of a scandalous nature. Instead of finding compassion for a beloved icon, we are quick to turn our backs and make the pain of loss easier by falling prey to the judgmental “celebrity druggie” stereotype.

I propose that we pay tribute to Prince in a way I think he would have appreciated, by using this tragedy to start a conversation about the differences between addiction and dependence, about the commonality of chronic pain, and the deeply rooted prejudice associated with the disease of chronic pain.

But, I also propose we take it one step further, and affect change. We need not complain to each other endlessly about “us” (those who suffer chronic pain) and “them” (the healthy), and the great rift between. We have been doing that for years, and although it’s nice to know that someone else “gets it,” it is not other chronic pain sufferers who we need to understand our plight.

As much as we may not like to admit it, there are some similarities between addicts and chronic pain patients -- neither of us get the treatment or respect we need and deserve. We tend to be equally as judgmental of addicts, deeming them lower on the social hierarchy than us, in the same way as healthy people think of us to them.

I am not suggesting we continue to blur the lines between addiction and dependence, but I am suggesting we consider fighting this battle together.

There was a time when white people who sympathized with black civil rights activists were considered “almost as bad” as the “uppity blacks,” who demanded their well-deserved, long overdue rights to equality. Eventually, most people began to understand that treating people differently, as though they were not entitled to the same liberties, was intrinsically wrong. Many didn’t like it, but they had to abide by it. Understanding would only came later.

The same can be said about the lesbian, gay, bisexual and transgender community, and other groups that differ from what society considers “normal.” On many levels, these groups still struggle with inequities, just as we do, but they are making strides. And we must, too.

As it stands, the current political and social climate surrounding pain medication and chronic pain itself, not to mention addiction, have become civil rights issues. We no longer need to worry about gaining understanding, as much as we do defending our basic human rights. Although understanding is a part of the answer and a desirable outcome, sometimes people must be pressed to follow rules against discrimination. 

I was an outsider long before I was a chronic pain patient. I am a long–time artist, activist, outspoken woman, and all-around “weirdo” in many circles. But, I’ve never been ashamed of that. In fact, I’ve always taken pride in my one-of-a-kindness, having been voted “Most Unique” in my class of ‘93 at a conservative, rural high school.

To me, Prince always seemed a kindred spirit—emotional, passionate, creative, misunderstood. Now that I know he suffered chronic pain, and that he may have had double hip replacement, I find myself even more drawn to his spirit of individuality and strength. I find myself respecting him and relating to him on an entirely different level now.

His elusive, gentle, humane, kind, pained soul was not merely the cliché tortured soul of an artist, but also the tortured soul of a human being who must present a strong face, while holding back the physical and emotional pain, loneliness, and often hopelessness that all chronic pain patients can relate to.

In the name of Prince, I propose a revolution. The play on words is not accidental. Prince revolutionized music, fashion, art, gender and sexual perceptions, and more. He was for many of us the embodiment of our coming of age and understanding. Let us memorialize him in a way he would appreciate—by standing up for who we are, and by not being afraid or embarrassed of what people will think or say.

And like his band, The Revolution, let us stand with him, and make the world see that we will not be shamed, shunned, or disenfranchised, and that we will stand up for our rights and be prepared to explain and defend our cause -- life.

“Dearly beloved: We are gathered here today to get through this thing called life. Electric word, life. It means forever and that's a mighty long time.”

In Prince’s honor, let’s go crazy and do something unheard of. Understand each other and learn from this.

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.