Do You Know How To Say No?

By Ann Marie Gaudon, PNN Columnist

Such a tiny word. Such a powerful one. For toddlers and teenagers, saying “No” comes easily. Then something changes. Some of us as adults would rather stick pins in our eyes than say no to anyone. That’s a problem. An even bigger problem if you suffer from chronic pain

You likely know the drill. Your body is screaming in flared pain -- red flags for rest and self-care. But you don’t say no to your neighbour who needs help with a chore. You don’t say no to babysitting your nieces at the last minute. You don’t say no to that extra job your boss asks you to stay late for. 

The inability to say no is directly linked to our need for approval from others. Why do we crave their positive opinion? There are many reasons, but for our purposes let’s just talk about chronic pain patients and some of the reasons we can’t say no.

The consequences of unrelieved pain can include but are not limited to:  depression, anxiety, impaired function, financial distress, sleep and appetite disturbances, identity erosion, social isolation, relationship conflict, demoralization, and feelings of helplessness and hopelessness. They can all disconnect you from your family, friends, work and social life.

In a herculean attempt not to relinquish “who we were” before the pain, we don’t say no. Our hearts scream out: “I’m still a son/daughter! I’m still a partner! I’m still a parent! I’m still a good friend! I’m still a valued employee!”  We instinctively try to stay in the group in order to survive. We must be accepted and approved at all costs!

What are the personal costs of not saying no?

Anxiety

We only have so much time and energy, and yours is steadily eroded by other people’s demands. You may begin to experience anxiety attacks. Constant worrying and catastrophizing can lead to heart palpitations, sweating, headaches and other physical manifestations.

Depression

Constantly giving in to the demands of others and consistently falling behind in your own life can lead to feelings of low self-esteem, a major contributor to depression. If you spend your time catering to others without focusing on your owns needs, you can lose track of what you want and who you really are. This loss of identity feeds into anxiety and depression.

Relationship Breakdown

In the beginning, saying yes all the time may be appealing to you and to others. But as time goes by hidden resentments may surface or you may feel manipulated.

If you cannot say no, you’re not being honest about your feelings for fear of hurting someone else’s. You may not even be honest about how much pain you are in.

Honesty is a cornerstone of healthy relationships. Saying yes when you truly want to say no isn’t being honest – to yourself or anyone else.

Stress

Too much stress isn’t healthy and can be devastating to pained bodies. It’s exhausting trying to please everyone all of the time. Exhausted bodies are stressed bodies. You’re more likely to experience low grade colds or illness, have trouble sleeping, and feel more pain.

The inability to say no is problematic to your mental and physical well-being. It serves no one – not you or others – to be consistently saying yes when your body says no. You are not being true to yourself or to them.

Others cannot see your pain or understand what your needs are, so they are not given a chance to respect them. It’s really a lose-lose situation.

How does a pain sufferer get themselves out of this unrelenting pattern? Here are four tips I’ve learned:

1. Make Your Pain Visible

If you were in a wheelchair, your disability and limitations would be obvious. But when your pain is invisible, others may need to be educated. It’s time to fess up about what you are capable of and what you are not. Your health demands it.

You’ve likely heard this before: If you don’t take care of yourself first, you will never be able to take care of others. Think of the flight attendant teaching us how to use our oxygen masks in case of emergency. You always put your own mask on first to get the oxygen you’ll need to help others. It’s just like that with pain. When your body says no, it becomes you first.

Some people feel shame in telling others that they suffer from chronic pain. They feel broken or weak and don’t want others to know. This is an erroneous self-belief. It creates an invisible boundary between yourself and the rest of the world.

You = bad, broken. Everyone else = good, whole.

This is emphatically untrue. You are not different from the rest of the world. Everyone suffers in some way, shape or form. It may not be from physical pain, but it will be from something else.

It may not be the easiest conversation you ever have, but it’s one of the most important ones.  Some folks provide educational material about their pain condition to help explain how debilitating it can be. You might be pleasantly surprised when you give people a chance to understand. They may embrace you with compassion, respect your limitations and treat you accordingly – just as you would for a loved one.

If you don’t say no and make your pain visible, they’ll never see the authentic you. They only see a façade: You wearing a “yes” mask. Is that fair to either of you? 

2. Create Boundaries  

When you’re learning how to say no, it’s easy to get caught off guard so be prepared. Sometimes well-meaning loved ones will try to coax or guilt you into doing something you really don’t want to do. Have a narrative ready. It could be something like, “I know I look fine, but my joints are hurting so much it’s getting hard to move. I’m just exhausted and I need your support right now.”

Or perhaps something like: “Sorry, I cannot help with that because I’m in a pain flare today and need to take care of myself. I’d really like to help when I am able to, so next time around, ask me again.”

Boundaries for support from other people need to be firm. If not, you risk no one taking you or your pain seriously.

3. Simplify Your Social Life, But Don’t Abandon It  

What about social occasions? How do you handle an impromptu invitation from a friend when your body is telling you to stay put? Living as well as possible with chronic pain is all about constant adaptations.

Perhaps there is something you could attend if someone else did all of the driving?

Maybe you can go to a potluck dinner, but your contribution is store-bought?

Loved ones want to get together for a meal? Dining out is a terrific choice because there’s no cooking or clean up involved.

Can’t keep up with your friends at the gym? Let them run on their treadmills or go to cardio class while you walk around the track. You can all meet up later for a stretch and a green tea.

Family wants to go bowling, which is something you’re not physically capable of? No need to miss out. Let them bowl as you sit and chat with them as they take their turns. You might be pleasantly surprised your inner circle is just happy to have you there and that they’ve come to understand your limits

4. Yes, But…

How do you RSVP to an invitation when you have no idea how you will feel at that time?

How about this: “Thanks, I would love to come but there is a chance that it may be a flared pain day for me. Can I confirm with you the day of, if that’s okay?” This is a regular of mine.

It may turn out to be a low pain day, in which case I’m attending.  If it’s a medium pain day, I’ll put my psychotherapy tools to work and go. If it’s a very high pain day, I am staying home.  

Framing it this way makes it much easier for me to bow out at the last minute. I do this both socially and with work-related meetings. If I’m not able to make it, we re-book so they know I really do want to attend, I just need to be well enough to do it.

There are some very special and rare occasions where I will say yes even if my body says no, such as a wedding or special birthday event. In that case, I will not book myself for anything or anyone for a couple of days after so that I can fully recover.

Say no when necessary. Simplify and adapt to your needs when necessary. You first. It’s not selfish, it’s self-compassion. Chronic pain patients could all use more of that. Seek help if you need some.  Most therapists are well-versed in self-compassion.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit 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.

Epidural Steroid Injections Won’t Solve Your Back Pain

By David Hanscom, MD, PNN Columnist

A lawsuit was in the news recently about a Kentucky doctor who refused to give his patients pain medication unless they had epidural steroid injections.

Really? I have run across this scenario many times throughout my 32 years of performing complex spine surgery. It is a huge problem from several perspectives.

First of all, epidural steroid injections don’t provide lasting relief for any indication. This is particularly true when they are recommended for neck or back pain. There is not any research paper indicating a significant benefit. Yet they continue to be administered at a high rate.

I prescribed them sparingly for acute ruptured discs, where the natural history is for them to resolve without surgery most of the time. The steroids do knock down the inflammatory response that occurs around the disc material, so it buys some time and sanity while the body heals.

I also used them occasionally for spinal stenosis (constriction of the nerves). Pain in the arms and legs would usually improve for a short period of time.

What was unexpected was that many patients that I had on the schedule for surgery would cancel because their pain would disappear when they utilized other tools to calm down the body’s stress hormones. The more favorable hormone levels changed their pain threshold.

Epidural steroid injections as a stand-alone treatment might be of some benefit, but they aren’t going to definitively solve your chronic pain. Whatever benefit that a patient may feel probably comes from the systemic effects of the drug. Steroids make everything feel better, but it’s unfortunate that there are so many severe side effects.

Let me share what happened to one patient.

Ralph was one of my favorite patients. I worked with him for over 20 years. I haven’t met a more well-intentioned human being. By the time I first met him, he had undergone over ten surgeries and was fused from his neck to his pelvis. He never had relief from his chronic back pain. I had to perform a couple of major surgeries just to get him standing up straight.

I worked hard with Ralph on a structured rehab approach with some modest success. I lost track of the number of phone calls. He had a lot of stress at home and was helping to raise a grandchild. In spite of his pain, he kept moving forward.

Then he broke through and had a dramatic decrease in his pain and better function. Ralph wasn’t pain free and his function was permanently limited because his spine was fused. But he was stable on a relatively low dose of opioids. We were both pleased.

I didn’t hear from Ralph for many years until he called me from his local hospital. He was quite ill. His entire spine was severely infected. His primary care physician, who took care of his meds, had retired. No one else would take care of his needs and he was referred to a local pain clinic, which performed a high volume of spinal injections. They would only prescribe opioids if Ralph agreed to the injections.

Not only are injections ineffective for back pain, they really don’t work in the presence of 12 prior surgeries. Ralph’s back was a mass of scar tissue, rods and bone without much of a nerve supply. There is also less blood supply in scar tissue and a much higher chance of infection. Where would you even place a needle if the whole back is fused?

We admitted Ralph and had to open up his whole spine, which was infected with several hundred milliliters of gross pus. It took another two operations to wash him out and get the wound closed. He eventually did well, and we continue to stay in touch.

Ralph had to undergo a proven ineffective procedure in a high-risk setting in order to obtain pain medications that were effective. He became seriously ill, underwent three additional surgeries with the attendant pain and misery, and the cost to society was over a hundred thousand dollars. I rest my case. 

Dr. David Hanscom is a spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

In his book Back in Control, Hanscom shares the latest developments in neuroscience research and his own personal history with pain.

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

A Pained Life: Accepting the Unacceptable

By Carol Levy, PNN Columnist

I was recently talking with a friend who has chronic pain and, like me, has had to deal with many bad side effects on top of the pain.

Helene has a facial pain disorder. Unfortunately, as a consequence of her last surgery, she developed problems speaking and swallowing. She has repeated injections to help with her voice, but the swallowing problem Helene says “is permanent." 

I can't believe that. “Have you had a third or fourth opinion?” I asked.

“Yes, and a fifth and sixth opinion. There is nothing more to be done,” Helene explained. “But I have adjusted to it and accept it.”

Her last statement felt almost like a punch to my gut. I am happy for her. But truth is, even after 40 years, I do not accept the pain, disabilities and disfigurement the many procedures and surgery have wrought in my life.

It is hard to adjust to change, especially when it affects our natural abilities and body functions. Even harder still when it is the result of medical or surgical mistakes. Or a surgery or treatment that went fine but caused more damage.

Acceptance certainly makes life more bearable. And yet, I have never been able to reach that state.

My pain started in 1976. By now I should be well over having to accept and adjust, but instead I am still angry, frustrated and upset when the pain strikes. When I try to read or write, it exacerbates my eye and facial pain and becomes more then I can bear. The facial paralysis, a side effect of a surgery in 1979, is a hateful reminder of the terrible surgery that caused it.

Children sometimes look at me strangely and stare. I get it. I look different. If I was a child I would also probably look and wonder, “What happened to that lady?”

But It is the adults who feel a need to point me out or comment about me, within earshot, that hurt the most.

My cervical spine was severely injured during one operation. As a result, I have 12 screws and 2 clamps placed in my neck to literally hold it up. When I saw a man look at me, tap his companion's shoulder, point me out and make a slashing motion across his neck -- appearing to indicate to his buddy that I tried to slash my throat -- I wanted to crawl under a table.

Then the question becomes, “How do you adjust?” Or for people like me, “Why haven't you adjusted and accepted?”

As I think about the people I know who have chronic pain, I realize the difference between those who have accepted, adjusted and accommodated versus those of us who have not is a simple one: They have been accepted, and their pain and disabilities have been incorporated not only into their lives, but the lives of those around them. They are believed.

What do those of us who do not have that kind of outside affirmation do? We need to find a way to self-solace, whether it’s by therapy, a support group or meditation. It may seem simplistic, but we are our own best healers. By self-healing we can throw off the hurt and disbelief heaped upon us by others and instead nurture ourselves.

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.

Pain Patient’s Death Was ‘State-Sanctioned Torture’

By Richard “Red” Lawhern, Guest Columnist

Dawn Anderson was 53 years old and a former registered nurse. Her family has granted permission to share the story of her last days. Dawn’s story is both horrifying and highly representative of many people in pain. These are patients who – in effect, if not from deliberate intent – have died in entirely avoidable agony because of the CDC’s 2016 opioid prescribing guideline. 

Dawn was diabetic.  She also suffered from kidney disease.  She had lost both legs and one eye, resulting in severe pain for many years, which until recently was managed with opioid pain relievers.  Her pain management physician – Dr. Paul Madison -- is no longer practicing medicine. Madison was recently convicted of healthcare fraud and awaits sentencing for billing insurance companies $3.5 million for services he didn’t deliver. Madison reportedly had “pill mills” in 11 states, from which he dispensed very high volumes of opioids. 

When Dr. Madison was barred from further treating patients, Dawn sought help from multiple pain management doctors in her area.  She found that many were no longer accepting new patients.  Among the few who would see her, none would treat her with opioids at the dose levels that had been effective for her in the past. Several were transitioning their patients to addiction treatment with Suboxone or recommending steroid shots. 

DAWN ANDERSON

Dawn’s most recent pain management doctor refused to prescribe above 90 morphine milligram equivalents (MME) per day, citing the CDC guideline as a de facto maximum allowable dose level.      

Like many patients with chronic pain, Dawn’s medical situation was complex and involved several interacting medical disorders and issues.  She had a history of MRSA – a highly aggressive antibiotic-resistant staph infection.  Dawn had also personally observed many patients in whom spinal injections had led to worsening pain.  She refused both Suboxone and the steroid shots

On March 4, 2019, a family friend spoke with Dawn.  She was very tired and not feeling well. Her husband was calling from work throughout the day.  When she did not answer, he called the police department and asked for a wellness check. When police arrived, they found Dawn had fallen out of her wheelchair and was unconscious on her living room floor. She was transported to a hospital.  When she regained consciousness, she was very confused.

Hospital physicians determined Dawn had a severe urinary tract infection and her kidneys were failing. She was admitted to ICU and a doctor ordered a dialysis tube. Staff also forcibly started her on Thorazine injections, as she was refusing dialysis.  They asserted that she was mentally incompetent.   Family members observed that she was covered in bruises due to the force used when pinning her down to administer the injections.

On March 10th, Dawn was moved from intensive care to a regular hospital room. Her daughter called a family friend so that Dawn could talk to someone she liked and trusted.  The conversation was very difficult.  The friend asked why Dawn was refusing dialysis.  Dawn replied, “I just can't take it anymore.”  She anticipated having new issues with the dialysis, but most important was her unbearable pain.  Hospital staff had again refused to provide adequate treatment with opioid pain relievers.  

Both Dawn and her friend were in tears, but Dawn was adamant: “Honey, I love you, but I can’t suffer any more. The pain is unbearable and I just can’t fight any more. If you keep begging me to, I will hang up.” 

Dawn’s friend and her family had talked with her about entering hospice care, where she would at least be treated for her pain.  She was released from the hospital that day to go home.  Her friend spoke with Dawn an hour later.  She was tired, but had at last been placed on comfort care.

Dawn died a day later, on March 11, 2019. 

What can we learn from this deeply disturbing narrative?  Would Dawn have lived longer if she had been treated adequately with opioid pain relievers?  That is impossible to say with confidence.  But what is clear is that this woman died in needless agony.  Dawn should never have been forced to see a pill mill doctor in the first place. And she should never have been forced to taper from effective dose levels because legitimate doctors were intimidated by CDC and state regulators into refusing effective — and largely safe — opioid therapy. 

By any other name, this was state-sanctioned torture.  

It is not accidental that the American Medical Association recently repudiated the CDC guideline.  But the government dinosaur’s bureaucratic brain is in its tail and it hasn’t gotten the message yet. CDC has merely doubled down on the mythology that doctor over-prescribing caused our “opioid crisis.” They are running away from their own overdose data, which demonstrates the falsity of their assertion.

There is very little relationship between physician prescribing and either opioid addiction or overdose deaths. But the only metric CDC seems willing to use to measure the success of the war against drugs is reduced prescribing to Dawn Anderson and other people in pain.

It is time for this madness to stop!  Opioid prescribing guidelines need to be taken away from the CDC and rewritten from the ground up by more competent agencies or by professional groups within medicine itself.  And this time, multiple patient advocates need to be voting members of the writers’ group.

Richard “Red” Lawhern, PhD, has for over 20 years volunteered as a patient advocate in online pain communities and a subject matter expert on public policy for medical opioids.  Red is co-founder and Director of Research for The Alliance for the Treatment of Intractable Pain.

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 Complexity of Rx Opioid Misuse

By Roger Chriss, PNN Columnist

The misuse of prescription opioids is a complex phenomenon. Recent research has found that non-medical opioid use almost always involves a variety of other substances -- not just exposure in the course of routine medical care.

The risks of non-medical prescription opioid use developing into addiction need to be better understood to develop more effective measures to prevent misuse and to ensure that patients who use opioids responsibly are not wrongly targeted.

A new study in The American Journal on Addictions looked closely at the 2016 National Survey on Drug Use and Health, which found that that about 2.5% of respondents had misused prescription opioids in the previous 30 days. Almost half (43.9%) obtained opioid analgesics from a friend or relative for free and most were using other substances, such as cigarettes, alcohol, marijuana or street drugs.

“So much of the public discussion focuses on the opioid epidemic as though it is happening in a vacuum when, in fact, so many people misusing prescription opioids are also engaging in other substance use,” says lead author Timothy Grigsby, PhD, an assistant professor at The University of Texas at San Antonio.

“If we want to end the opioid epidemic, and stop another similar one from taking its place, then we need to consider the entire clinical picture of the patient including their use of other substances.”

Grigsby and his colleagues found that prescription opioid and polydrug users were also more likely to engage in stealing, selling drugs, have suicidal thoughts, suffer from major depression and need substance use treatment.

A similar study recently published in the journal Pediatrics examined non-medical prescription opioid use by parents and teenagers. The study found that parental misuse of opioid analgesics was associated with teenagers doing the same, with mothers’ use having a stronger association than fathers’ use.

Parental smoking, low parental monitoring and parent-adolescent conflict were also associated with teenage prescription opioid misuse, as were adolescent smoking, marijuana use, depression, delinquency and schoolmates’ drug use.

Despite what you may have heard, non-medical prescription opioid use does not usually lead to heroin. The National Institute on Drug Abuse reports that only 4 to 6 percent of people who misuse prescription opioids transition to heroin.

But trends in this transition have been shifting. A new study in PLOS One found that people who injected illicit drugs who were born after 1980 were more likely to initiate drug use with prescription opioids and non-opioids, and had higher levels of polydrug use. This study was limited to Baltimore, but similar findings have been reported for other parts of the U.S.

Importantly, most non-medical prescription opioid use occurs in the context of more general substance use. U.S. News recently reported that most patients treated in emergency rooms for misuse of prescription medications get into trouble because they mixed different substances.

"Most of the time there may have been only one pharmaceutical involved, but there were other non-pharmaceutical substances or psychoactive drugs or alcohol involved as well. When people get into trouble with misusing medicines, they're usually taking more than one substance," Dr. Andrew Geller of the CDC told U.S. News.

This is a long-standing trend in the opioid crisis. The 2014 Overdose Fatality Report in Kentucky found that the top five drugs in drug-related deaths were morphine, cannabis, heroin, alcohol and alprazolam (Xanax), with more than one drug present in many overdoses.

Moreover, a new study in the Journal of Substance Abuse Treatment compared 2013 and 2017 data on patients seeking opioid addiction treatment. Researchers found that many patients had employment, psychiatric, alcohol and drug problems, and were more likely to have depression, anxiety, hallucinations and suicidal thoughts. In other words, the overdose crisis is far more complex and dangerous than just opioids alone.

Fortunately, these long-standing trends are now starting to be appreciated. Public and private health officials in Ohio have started looking at data from multiple sources to better address mental health and substance abuse. 

The overdose crisis is a fast-moving target that is rapidly evolving. Overdoses now more than ever involve multiple drugs, and may not even occur among people who use opioids non-medically or people who have a substance use disorder. Understanding these features of the crisis is essential for developing better responses.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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

My Daily Persistent Headache

By Warren Cereghino, Guest Columnist

Waking up from my pre-work noontime nap one October day in 2007, I had a headache.  I still have it.

Thinking little of it at the time, I took two acetaminophen capsules (maybe Tylenol; maybe the generic from CVS or Costco) and headed off to work. 

I toiled nightly in a Los Angeles television station’s news department, where I was a news editor contributing to the nightly 10pm newscast.  I liked the work and didn’t mind the night schedule because it kept me out of mischief and off the streets.

That first night, the headache persisted.  And it just never stopped.  Over the next few weeks, I was gobbling pain relievers of one form or another every four hours, all the while trying to find the cause and a cure with all sorts of practitioners.

A little research taught me that this was known as “New Daily Persistent Headache.”  It sure as hell was persistent.

My journey took me to the offices of two different chiropractors who had successfully treated the persistent headaches of two referring friends (one was my daughter-in-law, who is a RN).  Both doctors tried, and both were unable to make it go away. 

Next, I tried acupuncture. That didn’t work, either. 

WARREN CEREGHINO

Meanwhile, I kept gobbling acetaminophen and ibuprofen like they were candy.  Determined to find the cause, I turned to neurologists. Two doctors who were with separate practices in Santa Monica evaluated me, had me undergo a scan and tried to figure it out, but to no avail.

By year’s end, I was still struggling with the debilitating effects of the headache and despairing of ever finding the elusive cause and cure. I had to face the fact that the only avenue open to me appeared to be pain management.  

In January 2008, I went to see David Kudrow, MD, whose neurology practice in Santa Monica specializes in pain management.  He treats patients and conducts research.  Dr. Kudrow gave me a thorough interview and then prescribed a nightly dose of 10mg of Elavil, an anti-depressant.

I cannot remember what he predicted in regard to when it would take effect, but a few weeks later I encountered a young man who’d grown up across the street from me and was now a practicing pediatric neurosurgeon.  He said he agreed with the prescription and told me it would take about a month to take effect.  He was right. 

Over the years, the dosage of Elavil (or its generic amitriptyline) has had to be increased, first from 10mg nightly and then to 20mg.  A couple of years ago Dr. Kudrow bumped it up again to 30mg nightly.

Recently he suggested I try to scale back to 20mg nightly. I tried, but it didn’t work. The 20mg dosage didn’t offer enough pharmacological firepower and I went back to 30mg after about ten days. 

Dr. Kudrow saved my life.  I have other health issues, but without his help in pain management I wouldn’t even be able to address the other issues of hypertension, diabetes and pre-clinical heart disease. I’m two months shy of turning 82 as of this writing.  Without Elavil, I would be dead.

Warren Cereghino is a retired TV news producer, writer and editor who spent 55 years at TV stations in Phoenix, Sacramento, San Francisco-Oakland and Los Angeles.  Warren is a graduate of Arizona State and a military veteran who served during the Berlin Crisis of 1961. 

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

My Constant Daily Companion

By Mia Maysack, PNN Columnist

I've got a companion everywhere I go. The wants and needs of this little bugger consistently require that I prioritize it before myself. It tests my boundaries, my patience, as well as my sanity.

I cannot eat, sleep or even use the restroom uninterrupted. This results in a consistent flow of tailored accommodations to make life easier for all involved. Temper tantrums are not only a daily occurrence, but a humble reminder that I am operating on a clock outside of my control.

I'm not discussing a child. I am referring to my chronic illness.

Migraines and my other ailments wake me up throughout the night, demanding attention. We all know how this works. No one gets any rest until the situation settles down. Pain is a constant companion who must be catered to.

Today, for example, I woke up to what felt like a pitchfork making its way through my cheek and out through my left eyeball.  Grabbing my face out of reflex -- as if somehow that'll ease the discomfort -- I rocked myself back and forth until the severity lessened.

My entire body still feels the aftershock of that attack, but it's only the first of many that'll transpire throughout the day. I know enough to recognize this as a warning.  My brain injury is now triggered, turning an everyday 5/6 on the migraine scale into a solid 8/9.

The impact on my physical body is severe due to the heightened sensitivity of my nerves. Getting up from a sitting position gets harder by the day. At times it is not possible for me to stand up straight or navigate stairs. Sometimes I can barely walk.

There is overwhelming nausea to the point that even breathing seems to aggravate it, so no food or drink remains inside. This causes further complications, as malnourishment and dehydration only worsen things. The dizziness gets so severe it hinders my eyesight.

Despite the fact I am on no drugs whatsoever, I feel “out of it” to the point that all I can do is write because I'm unable to verbally speak.  

If you're so sick, how can you type?  Lowest brightness. Special glasses. I document this so the world can understand and because I am currently on bed rest.

It doesn't take long for the darkness to creep in, with special guests anxiety, grief, stress and panic. Despite how much it hurts, keeping my mind busy is imperative. So I write.  

What I'd really love to do is rest, but it hurts to close my eyes. And even though quality sleep is what my body needs most, it further heightens my head pain.  In other words, the self-care that has been my saving grace actually worsens things.

I'm not a violent person, but if someone suggested a Tylenol or something like it, I'd have to fight the urge to use my last ounce of energy to punch them in the face.

No work was done today, meetings were cancelled, my dog didn't get a walk and I am barricaded in a blacked-out room. Another rescheduled dinner date with the girls, unable to answer phone calls or messages, couldn't run errands or get any chores done. The world continues to spin without me.

Missing out on life and feeling the weight of disappoint is a crippling side effect of all these symptoms. With broken hearts we mourn the lives we've lived and who we once were.

I have always been the one to take care of everybody -- the nanny, teacher, nurse. Now I struggle just to keep up with what's going on internally. As if that’s not difficult enough, we have to fight to be taken seriously or even believed. That is unacceptable.

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

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

A Recap of Rare Disease Week on Capitol Hill

By Barby Ingle, PNN Columnist

Last week was Rare Disease Week on Capitol Hill, and I was excited to join hundreds of patients, advocates and caregivers in Washington, DC to raise awareness about rare diseases.

I was once again chosen as the Arizona “team leader” by the EveryLife Foundation, and led our group in meetings with our Senators and Representatives. I handled logistics for the legislative conference, helped organize the strategy for the meetings and kept the group on task during our discussions.

The EveryLife Foundation is a science-based advocacy organization that works to bring lifesaving treatments to 30 million Americans with rare diseases. There are more than 7,000 rare diseases. The foundation’s focus is on educating and advocating for rare disease patients to ensure they are heard by policy makers in government and by healthcare organizations.

The week kicked off on Sunday with a cocktail reception and Rare Disease documentary screening at the Ronald Reagan Building. We spent Monday at a legislative conference, where we heard from industry lobbyists about important federal bills and learned how the National Institutes of Health (NIH) is researching new treatments for rare diseases.

On Tuesday we split up and went to scheduled meetings with our members of the House and Senate on Capitol Hill. This day of lobbying was for patients, caregivers, and patient advocacy groups only.

Patient and fellow advocate Mike Heil joined me and my husband Ken as we visited the offices of Sen. Kyrsten Sinema (D-AZ), Sen. Martha McSally (R-AZ) and Rep. Paul Gosar (R-AZ).

One of my favorite parts of the week was Wednesday, when there was a briefing by the Rare Disease Congressional Caucus at the Dirksen Senate Office Building. The caucus is a bipartisan group of over 100 senators and representatives that meets to pursue common legislative objectives to help rare disease patients. You don’t hear much about bipartisanship these days on Capitol Hill, but this group has been active since 2010.

The caucus meeting was followed by a reception that featured a collection of art from across the rare disease community. This event was designed to help educate Congress about rare diseases and to empower patients to express their pain through artwork.

Thursday was full of action as we gathered at the NIH headquarters in Bethesda, MD to mark the global observance of Rare Disease Day. The day featured multiple interactive panel discussions on rare disease research, patient registries and cancer research initiatives, with the theme being "no disease left behind, no patient left behind."

Other highlights included posters and exhibits by rare disease groups and researchers as well as artwork, videos and campus tours. Global Genes participants were encouraged to wear their favorite pair of jeans and to use the social media tag, #RDDNIH to help raise awareness.

This was my second time participating in Rare Disease Week on Capitol Hill. I hope you join me in person or online next year for Rare Disease Week 2020. For more information on the next event, visit the website of Rare Disease Legislative Advocates (RDLA).

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy 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.

How Has CDC Opioid Guideline Affected You?

By Lynn Webster, MD, PNN Colomunist

The controversial CDC Guideline for Prescribing Opioids for Chronic Pain was released on March 15, 2016 in an effort to curb the opioid crisis. While “largely supportive” of the guideline at the time, the American Medical Association had concerns about how it would be implemented.

“We remain concerned about the evidence base informing some of the recommendations; conflicts with existing state laws and product labeling; and possible unintended consequences associated with implementation, which includes access and insurance coverage limitations for non-pharmacologic treatments, especially comprehensive care; and the potential effects of strict dosage and duration limits on patient care,” said Patrice Harris, MD, then board chair-elect of the AMA.

Dr. Harris proved to be prescient. In the last three years, insurance companies, healthcare systems and dozens of states have imposed limits – based on the CDC guideline -- on the quantity and dose of opioids dispensed to people with pain.

Oregon has even drafted a plan to stop opioid prescribing for many Medicaid patients and require that they use alternative treatments. Here was my response to Oregon's plan, in which I warned that “forcing opioid tapers is not an appropriate or compassionate solution” and could drive some patients to suicide.

Pharmacies are also imposing limits. In 2017, CVS announced it would limit the number of pills for new patients with acute pain to 7 days’ supply, saying “the CDC Guideline should become the default approach to prescribing opiates.”

That same year, the giant prescription benefits manager Express Scripts also started limiting new opioid prescriptions and set a dosage limit “based on CDC prescribing guidelines.” 

This January, the Centers for Medicare and Medicaid Services made it more difficult for over a million Medicare patients to receive doses above 90 MME (morphine milligram equivalent) which they consider a high dose. CMS also imposed a seven-day limit on all patients receiving a new opioid prescription. The CMS rules are based on evidence “cited in the CDC Guideline.”  

‘Revisit This Guideline’

When it first published its recommendations, CDC pledged to “revisit this guideline as new evidence becomes available” and said it was “committed to evaluating the guideline to identify the impact of the recommendations on clinician and patient outcomes, both intended and unintended, and revising the recommendations in future updates when warranted.” 

In a recent statement to PNN, the CDC said there are “several studies underway with external researchers” evaluating the impact of its guideline on opioid prescribing and patient outcomes. The agency also said it recently commissioned a review by Agency for Healthcare Research & Quality (AHRQ) “to determine what new scientific evidence has been released” on the effectiveness of opioid and non-opioid pain relievers.

In the meantime, no revision of the guideline is being planned.    

The CDC guideline was well-intentioned and included many wise principles of opioid prescribing. But it appears to be more about limiting the supply of opioids than improving clinical care for pain patients. Limiting opioid access may be good for some patients, but for many it means more pain and a worsened quality of life.  

There is little evidence that limiting supply reduces opioid addiction and overdoses. Opioid prescribing in the United States has significantly declined since 2012, yet opioid overdoses continue rising – primarily due to illicit fentanyl, heroin and counterfeit drugs, not prescription opioids. The CDC's reevaluation of the guideline should take this into consideration.  

In 2018, the National Institutes of Health’s Interagency Pain Research Coordinating Committee recommended that the CDC "engage with advocates and patients, who have been negatively impacted by the unintended consequences of the CDC guideline." It also called on the FDA and the CDC to work together to "update and improve" the guideline.  

Rather than seeing the CDC guideline as a resource or helpful tool, many prescribers live in fear of it. The DEA now routinely monitors prescription drug databases, looking for “red flags” that indicate a doctor is prescribing opioids at doses above those recommended by the CDC. The AMA last year took a stand against this “inappropriate use” of the guideline, and passed a resolution stating that doctors should not be subject to criminal prosecution or other penalties solely for prescribing opioids at higher dosages.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine and the author of “The Painful Truth.”

You can find Lynn on Twitter: @LynnRWebsterMD. 

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.

3 Advances in Hormonal Pain Care

By Forest Tennant, MD, Guest Columnist

There are three new discoveries or innovations in hormonal pain care that I dearly love. I believe they are real trend-setters, but keep in mind that the “next big thing” may not endure.  Nevertheless, I’m so excited about these three newcomers to the hormone and pain care movement, that I wish to share them.

Hormone Derivative Treatment

Some really smart scientists know how to make derivatives or analogues out of the “real McCoy.” Why do this? Because the derivative can boost the potency of the basic hormone several fold. 

There are two hormonal derivatives that, in my hands, have been extremely beneficial to sub-groups of chronic pain patients.  The first is medroxyprogesterone, which is a derivative of progesterone.  In my experience, medroxyprogesterone is far more potent in treating intractable pain patients than is plain progesterone. 

I have administered medroxyprogesterone to intractable pain patients and most found that it reduced their pain and their need for opioids.  The causes of intractable pain in these patients were multiple and included Lyme disease, post-traumatic headache, post-stroke and arachnoiditis. We have often made a topical medroxyprogesterone (skin massage) cream for use over arthritic joints and over the lumbar spine of adhesive arachnoiditis patients.

The second hormone is nandrolone, which is a derivative of testosterone.  When a derivative is made from testosterone, it is often called an “anabolic steroid” because it grows tissue.

Anabolic steroids have a generally pejorative or negative view since they have been used to grow the muscles and nerves in athletes that wish to gain athletic advantage.  Don’t be too offended by the term.  After all, the pain patient needs to grow some nerves and muscle to relieve pain. 

The U.S. Food and Drug Administration has approved nandrolone for use in “wasting” or “catabolic” conditions that cause tissue degeneration.  Many severe pain patients qualify.  A big problem today in pain practice is the Ehlers-Danlos syndrome (EDS) patient whose nerves, muscles and connective tissue genetically and progressively degenerate. Nandrolone is proving to be a Godsend to some of these suffering individuals. 

One really good thing about the derivatives medroxyprogesterone and nandrolone is that patients can safely try these hormonal agents for only a month to see if they get a positive response.    

Medrol Test

Medrol is the commercial and best-known name for the cortisone derivative methylprednisolone. It’s an old drug, but ranks as a top-notch newbie because it is the cortisone derivative that best crosses the blood brain barrier and suppresses neuroinflammation. 

To date, we don’t yet have a reliable blood test to determine if there is neuroinflammation in the brain or spinal cord, but it is essential to know if active neuroinflammation is in the central nervous system (CNS). 

Step one on the mending road is to suppress and hopefully eliminate neuroinflammation.  A Medrol test is, in my experience, your best bet to know if you have active neuroinflammation.  There are 2 ways to take the Medrol test.  One is to take an injection of Medrol for 2 consecutive days.  The other is to obtain what is a 6-day dose pack.  You take a declining dose of Medrol over a 6-day period.  All MD’s, nurse practitioners and physician assistants are familiar with the Medrol dose pack. So ask for it.   

Here’s the payoff.  If you feel better with less pain and better physical function, appetite and sleep, you have just determined that you have active neuroinflammation that is not only causing pain today but will worsen your condition in future days. 

If you have active neuroinflammation, you will need to start medicinal agents that are known to suppress neuroinflammation.  If your Medrol test is negative -- meaning it didn’t reduce your pain or improve other symptoms -- it means you don’t have much neuroinflammation and that your pain is due to nerve damage and scarring.  In this case you will have to rely on symptomatic pain relievers and perhaps try some long-term neuro-regenerative anabolic hormones to hopefully regrow or revitalize some nerve tissue.  

Hormonal Extracts

Years ago, including the days of the medicine man and shaman, extracts of whole glands, particularly the adrenals, gonads, pancreas and thyroid, were given to the sick.  In the early part of the last century, this practice was known as “glandular medicine” and whole gland extracts were administered by practicing physicians. Many a person today still finds that an extract of thyroid (made by the Armour Company) is superior to a single component of the thyroid gland or a synthetic thyroid. 

Some commercial companies have brought back whole adrenal and gonadal extracts.  These extracts are non-prescription and are starting to be used by chronic pain patients.  To date, they appear to be essentially void of complications or side-effects. Some chronic pain patients are reporting positive results for pain reduction and improvement in energy, appetite and sleep.  They are a safe, inexpensive way for patients and physicians who don’t like steroids or cortisone.

Hormonal treatments for chronic pain patients are fundamentally essential if a chronic pain patient wants some curative effects. 

Although hormones are a great advance, with more progress to come, they will never be a total replacement for symptomatic care with opioids, neuropathic agents and medical devices. Many long-term intractable pain patients have damaged and scarred nervous systems that neither hormones nor other known treatment can cure. 

“Hormone treatments should be initiated as early as possible if a person develops chronic pain.  I recommend hormone blood testing at least twice a year.”

— Dr. Forest Tennant

Hormone treatments should be initiated as early as possible if a person develops chronic pain.  I recommend hormone blood testing at least twice a year with a six-hormone panel.  You should replenish any hormone that is low in the blood stream. 

The hormone oxytocin has, as one of its natural functions, pain relief.  It is an excellent short-term pain reliever that can be taken with other symptomatic pain relievers to avoid an opioid.  There are other hormones made in the CNS that protect nerve cells by suppressing neuroinflammation and then regenerating them. To download a full copy of my latest report on hormones and pain care, click here.

Hormones and their derivatives are beginning to be used by chronic pain patients.  All chronic pain patients can and should ask their medical practitioners for a short-term therapeutic trial to find one that fits them.  While one size doesn’t fit all, all can find one size that does fit.  It’s the way forward.  

Forest Tennant, MD, MPH, DrPH, recently retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis.

The Tennant Foundation has updated its free handbook for patients and families living with adhesive arachnoiditis and intractable pain. The handbook features the latest groundbreaking research on hormones and pain care. To see and download a copy, click here.

This report is provided as a public service by the Arachnoiditis Research and Education Project of the Tennant Foundation and is republished with permission. Correspondence should be sent to veractinc@msn.com

Future Pain Pills

By Roger Chriss, PNN Columnist

The Food and Drug Administration announced this week that it would require drug makers to conduct new studies on the effectiveness of opioid pain medication and whether long-term use of the drugs lead to addiction. The FDA’s unprecedented action was due in no small part to a 60 Minutes report that said the agency “opened the floodgates” to the opioid crisis by approving the use of opioids for chronic pain. 

With opioid medication coming under scrutiny again – and perhaps more regulatory action – this is a good time to assess where we stand with development of newer and safer painkillers.  

Many analgesics already on the market have too many risks or too few benefits. A recent meta-analysis in JAMA concluded that opioids “may provide benefit for chronic noncancer pain, but the magnitude is likely to be small.”

And a new Cochrane review on acetaminophen (Tylenol) for hip or knee osteoarthritis found “only minimal improvements in pain and function.”

So new analgesics, whether safer opioids or non-opioid drugs, are urgently needed. Fortunately, there has been significant progress.

NKTR-181, from Nektar Therapeutics, is a new kind of opioid under “fast track” FDA review. It was designed with safety in mind, because it enters the nervous system slowly as a result of its unique chemical structure. NKTR-181 is the only abuse-deterrent opioid in the drug development pipeline designed to reduce the “high” and “drug liking” that can lead to addiction. Practical Pain Management recently gave it four out of five stars as a future analgesic.

Desmetramadol, from Syntrix Pharmaceuticals, is another opioid in early testing. Developed with support from the National Institute on Drug Abuse, desmetramadol is designed as a safer version of tramadol, a Schedule IV opioid. Researchers are looking at the results of a recent clinical trial to see whether the new drug “provides the safety and pain relief of tramadol without its metabolic issues.”

VX-150, from Vertex Pharmaceuticals, is a sodium channel inhibitor that late last year finished a “proof-of-concept” Phase II trial successfully. It acts specifically on sodium channels to block the pain caused by small fiber neuropathy. Because these channels are not expressed in the brain, VX-150 should have few if any cognitive side effects. Phase III clinical trials are expected to start later this year.

Tanezumab, from Pfizer and Eli Lilly, just completed a Phase III clinical study for chronic low back pain. The results showed that tanezumab injections were associated with a statistically significant improvement in low back pain compared with placebo. Tanezumab is also being studied as a treatment for osteoarthritis, although there are some lingering concerns about its side-effects.

Finally, the novel compound AT-121 from Astraea Therapeutics is showing promise as a non-addictive opioid analgesic. Researchers created AT-121 to bind to both the mu opioid receptor and the FQ peptide receptor, a combination that blocks the unwanted side effects of current opioid analgesics. Preclinical testing of AT-121 in animals found that it was more potent than morphine, but did not produce physical dependence or tolerance at high doses. The National Institute on Drug Abuse recently called AT-121 a “promising alternative to opioid pain medications.”

Improved understanding of the nervous system and of chronic painful disorders is also contributing to drug development. A recent review in Frontiers in Pharmacology looks at emerging “safer opioids” that provide effective pain relief with fewer side effects. The review explains that the new goal of drug developers is to target opioid receptors in injured or diseased tissues, while avoiding the brain to reduce cognitive side effects and minimize risk of abuse, addiction and overdose.

And new genetic research is identifying genes involved in painful neuropathies. For instance, a recent case report found that a variant in the gene PMP22 is linked to painful peripheral neuropathy in Charcot-Marie-Tooth Disease.

With the prevalence of chronic pain increasing as the population ages, the development of safer, more effective analgesics is critical. Advances in drug development techniques and better understanding of painful disorders should accelerate the process.  

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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 Impact of Chronic Pain on Family

By David Hanscom, MD, PNN Columnist

I have long asked the spouses and partners of my chronic pain patients to participate in the “Direct Your Own Care” project — my step-by-step method that allows patients to take control of their treatment plan.

One reason is that partners of chronic pain patients also experience suffering. They have their own broken dreams, disappointments and often just feel bad -- because their partner is feeling bad. This is not primarily psychological. The human brain has “mirror neurons” that are stimulated by others’ behavior. If one partner is having a bad day, there is a good chance that the other’s day is not going to be great, either.

So, when the patient’s partner is snippy, critical or hostile, the patient tends to feel worse, too. The region of the brain that elicits a bad mood is stimulated. Conversely, if one partner is in a great mood, the other tends to be happier.

That is why— indirectly for my patients’ sake and directly for that of their partners — I believe it is vital that both partners learn tools such as expressive writing and adding more play into their lives to restore a joyful life.

Unfortunately, it is often remarkably difficult to convince other members of the household to engage in these tools. If you care for your family member, why would you not try to do as much as possible to help him or her heal?

I ran across a study in the journal Pain that partially explains why. Researchers had 105 patients with chronic back pain and their spouses keep an electronic diary for two weeks on their interaction with each other. Spouses were asked to observe and record the patient’s pain behavior (such as complaining or grimacing), while patients were asked about any criticism or hostility they received from their spouse.   

The following observations were made:

• Patient’s pain increased for over three hours when they felt hostility or were criticized

• Patient’s pain behavior consistently created a negative reaction from their partner

• These interactions were consistent. The conclusion was that long-term negative interactions not only cause more pain, they erode relationships and quality of life

This finding is similar to what has been found in depression research. Depressed patients act in ways that cause rejection from others, which in turn exacerbates the depression.

There is no question that chronic pain is a family issue. The couples’ study doesn’t even take into account the damage an angry person in chronic pain can inflict on his close relationships. The family unit can become a living hell and seem like a hopeless situation.

Fortunately, like the patient’s condition, the family dynamic can get better with the right tools. It did with me.

Anger and Relationships

In addition to stimulating the nervous systems of those close to you through the mirror neuron effect, there are additional problems created by chronic pain in the household. Most of them stem from the understandable problem that when someone is trapped by pain, he or she is chronically angry and upset. Members of the family become targets in many ways. 

First, there is often a lot of complaining about the pain, medical care and the frequent mistreatment that patients in pain experience. We have found that many, if not most patients in pain, discuss their problems daily. Family members become worn-down by this, but the patient usually doesn’t understand the depth of their despair. Although the family is concerned and upset that their loved one is suffering, they are frustrated by their inability to help. In medicine, the term we use for this is “compassion fatigue.”

Secondly, peace, love and joy are crushed and replaced with an angry energy. Family members are often targets of sharp orders and criticism. The patient may demand that their physical needs be met by the family. At the same time, the person in pain may emotionally withdraw and become isolated even while being in the middle of a lot of bustling activity. Family life just isn’t as much fun.

Third, the essence of successful relationships is being aware of the needs of those around you. This is true in any arena, but especially critical in the family. Lack of awareness is the essence of abuse and anger is the ultimate manifestation of it. You can’t see the needs of others because you are blinded by your own angry energy.

So, instead of the home being a place of safety, it can become dangerous. When a family member is triggered by an angry patient and becomes hostile or critical, then the patient becomes more upset and it all becomes like a giant ping-pong game. This the opposite of what you would want, where a happy person creates the opposite contagious reaction. And where is the end point?

Since anxiety and anger are unconscious survival reactions that are much stronger than the conscious brain, they aren’t subject to rational control. How many of us have ever solved a disagreement in the middle of an argument? It never happens.

Healing Energy

We have discovered that family dynamics are such a powerful force in keeping people in pain, that medical interventions may have a limited effect. Conversely, we have also found out that the family can be a remarkably healing energy for everyone involved – and it happens quickly.

The path to this healing energy is the topic for another article. But the starting point goes like this:

The first thing I ask is that every adult family member living at home immerse themselves in the healing process. That means actively engaging in the exercises that calm down the nervous system. You can see them outlined on my website.

Second, I tell patients never to discuss their pain – ever -- except with their medical team. Talking about pain reinforces the pain circuits and is frustrating to those who care about you, but can’t help. I also tell patients that they can’t complain about anything.

Third, I want the family to reminisce about the most enjoyable times in their relationships. What were the fun times? Discuss them in detail and stick with the conversation. Try to feel it.

The final and most challenging step is not bringing the pain home with you. I tell patients, “When you walk through the door, you’ll make a commitment to never bring pain back into the house.”

The intention is not to ignore pain or pretend it doesn’t exist, but to create a safe haven in your living space. I want patients to take the positive energy generated by the conversation about the best times in their relationship into the home and keep it there.

If you have to argue or fight – take it outside. Every person in the household has the right to relax and feel safe in the confines of their home.

Dr. David Hanscom is a spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

In his book Back in Control, Hanscom shares the latest developments in neuroscience research and his own personal history with pain.

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

A New Psychological Treatment for Chronic Pain

By Ann Marie Gaudon, PNN Columnist

Cognitive behavioural therapy (CBT) has dominated the field of psychological treatment for chronic pain for the last three decades. Studies have shown that it is effective, yet some researchers say CBT also has its limits and could be improved upon.

As CBT treatment approaches continue to evolve, what is noteworthy is a departure from the logic of everyday thinking. “Suffering” is not seen as pathology, but rather as inherent in the human condition. We don’t want it and we don’t like it, but suffering is inescapable.

Following this principle, the utility of “normal thinking, analyzing, and problem-solving” is called into question. Our brains have evolved into powerful problem-solvers that serve very well with things are external to us. For example:

Problem: your car malfunctions and no longer starts. If you have the knowledge and skills, you find the problem and repair the car. Problem solved. If you do not have the skills, you find someone who does and repairs it for you. Problem solved.

But chronic pain is an internal problem that cannot be easily solved. No matter the effort from our powerful problem-solving brains, doctors and patients often cannot work it out. For a sufferer to spend a lifetime attempting to analyze and logically think their way to being pain-free can be a lifetime spent in futility.

Acceptance and Commitment Therapy

Newer psychological approaches such as Acceptance and Commitment Therapy (ACT) are guided by the premise that we cannot change the pain we’re left with, so let’s change our response to that pain. ACT was outlined in a 2014 article in the journal American Psychologist.

ACT differs notably from traditional CBT in method. Rather than challenging and changing thoughts, ACT seeks to reduce their influence over our behaviour. This core treatment process is called “psychological flexibility,” which is the ability to contact the present moment fully and consciously, based on what the situation affords.

In other words, we act on our long-term values rather than short term impulses, thoughts and feelings. I have a personal example of this:

“Knowing that I love to dine out and see live theatre, my partner reserved an evening of these as a surprise birthday present for me. After the reservations were made, I endured a serious back injury, which makes sitting for long periods particularly painful. He offered to cancel immediately, but I stopped him.

My thoughts told me, ‘Don’t go! You’ll be in more pain. Stay home and protect yourself!’

I applied a few of the many skills I have learned through ACT and was able to hold these thoughts lightly, and essentially not buy into them. I committed to continue with the dinner and theatre plans, and accept the pain in the service of my value of nurturing a social life. Result: my pain was not in charge -- I was.”

Why would one choose these strategies? It’s because thoughts and emotions tend to be unreliable indicators of long-term value. They ebb and flow constantly and we have little control over them. If we act based solely on them, we can lose out on experiences that bring true meaning and vitality to our lives.

In my case, I could have held onto my thoughts tightly and isolated myself at home with my pain, but instead I chose not to buy into those thoughts, to be willing to have the pain (acceptance), and commit to an experience which brought richness to my life. I knew my evening out would not reduce or eliminate my pain. I chose to do something of value to me -- the pain came along for the ride.

The catch is that unhelpful thoughts and emotions can dominate without a person even being aware of them. This results in “psychological inflexibility,” which leads to rigid, ineffective behaviour. If I let my thoughts run the show, the result would have been that I isolated myself at home with my pain and likely more suffering. Other positive behaviours and experiences would have been essentially blocked from me. No thank you.

Evidence to support ACT for chronic pain continues to grow, and its efficacy is about the same as CBT at this point. This is no small feat, considering CBT has been the gold standard for decades.

There are at least six randomized controlled trials which support the use of ACT for chronic pain. Most show ACT increases the acceptance of pain, along with improvements in anxiety, depression, and reductions in disability. This psychological flexibility significantly improves life satisfaction, disability, emotional distress and fear of movement.

It will be interesting to see future studies as ACT continues to advance and helps us find new and different ways “to act successfully in the world.”

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit 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.

Advocating for Migraine and Headache Research

By Mia Maysack, PNN Columnist

This week I had the privilege of attending the 12th annual “Headache on the Hill” lobbying event in Washington, DC, which is organized by the Alliance for Headache Disorders Advocacy (AHDA). This was my second time being involved and I plan to attend for as many years as possible.

Headache on the Hill is a two-day engagement that began with a briefing for over 160 advocates who traveled to Washington from around the country. This is when we heard from experts and learned how to strategize, focus on what we want to achieve, and get an opportunity to engage and ask questions.  

Early the next morning we had a headache policy forum breakfast and heard from Rep. Andy Harris, MD (R-Maryland), who lives with cluster headaches and is passionate about our cause.

“If we have to drag the federal government kicking and screaming into a modern age on treatment of pain syndromes, including headache pain syndromes, migraine, cluster headaches - we'll do it and I'll be there with you every step of the way," Harris said.

After breakfast, we all joined together to venture as a group to Congress to meet with our representatives and shares our stories on the struggles we face as migraine and headache sufferers.

ALLIANCE FOR HEADACHE DISORDERS ADVOCACY

Most important is the need of more funding for research on headache disorders. Only through research do we possess a chance at ever understanding all the layers of this complex medical problem.

Headache disorders affect more than 90% of Americans and cost the economy $31 billion every year in lost productivity, yet less than 1% of the budget for the National Institutes of Health (NIH) is spent on headache and migraine research.

We are not attempting to suggest that our cause is more worthwhile than others. We're merely pointing out that we are on severely unequal ground. How is it that so many millions of Americans are enduring migraines and headaches, yet it is the least funded field of medical research? 

We know that chronic migraine is the second leading cause of global disability and cluster headache has the deserved reputation of being "the most severe pain that humans can experience." I have endured both in some form every day for almost 20 years straight.

Is there a logical reason why 59% of Americans impacted by chronic migraine who seek refuge in emergency departments receive opioid medication? Opioids can worsen the severity and frequency of migraines. Meanwhile, we have to fight for other treatments such as oxygen therapy, which has been proven to assist in decreasing cerebral blood flow and lessen the pain of cluster headaches. Oxygen is natural, has no side-effects and is non-habit forming, which are the approaches the NIH should be investing in.

Breath work and mindfulness meditation have also changed the game for me personally and I am grateful to declare that discipline in those practices has led to an overall heightened sense of awareness, which actually helps me with coping.

We've recently been fortunate enough to have several injections introduced as preventative treatments for migraine. That’s a great start -- though many of us are unable to gain proper access to these expensive treatments due to our circumstances.

The bottom line is that by showing up in D.C. and by advocating every chance we get in regular everyday life, we can make progress in raising awareness and funding for more research. Our efforts during Headache on the Hill were well received. Advocates from over 40 states attended, our meetings were empowering and there was empathy for our stories.

I am extraordinarily grateful to the members of Congress that made time to meet with us, the advocates who were alongside me for this adventure, and everyone who has or will participate in Headache of the Hill. 

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

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.

Health Is the Wealth We Need

By Barby Ingle, PNN Columnist

I recently came across an interesting quote on Instagram about the four types of wealth. The quote goes like this:

“There are 4 types of wealth:

1. Financial wealth (money)

2. Social wealth (status)

3. Time wealth (freedom)

4. Physical wealth (health)

Be wary of jobs that lure you in with 1 and 2, but rob you of 3 and 4.”

The quote is meant as advice for people looking for employment and the types of jobs they should seek. But I look at it from the health perspective, since that is my biggest challenge in life.  I want health wealth. Financial, social and time wealth are often dependent on our health wealth. Without health we are limited in what we can do.  

People planning to have a child wish for a healthy baby. We also wish for long and healthy lives. We don’t always get to choose our health or even learn how to achieve it. I believe one way to help this would be putting more emphasis on health education in school.

It is hard to have good social wealth when your health is poor. You can’t participate in as many social outings or events, and you may have a poorer attitude about your living situation if you have a chronic pain condition. Belonging to a social group, maintaining friendships, being actively engaged in a positive productive way, and even being married all raise your social wealth.

Maintaining financial wealth is more straightforward. You either have money or you don’t. But even when you have money, you are often working on making, getting or winning more. Most of us would love to be millionaires, but even on relatively modest incomes of $75,000, studies show that people are happier.

Now take the average income of someone disabled by pain. Our households typically bring in less than $30,000 and many single disabled people are living on less than $15,000 a year. It is difficult to climb out of a financial rut with poor health and medical bills needing to be paid.

I know chronic pain patients who work, but due to poor health they are not able to take jobs that are high paying or sustainable long-term. Missing work due to illness, brain fog due to pain, depression, anxiety and painsomnia all affect our ability to be productive in a standard work environment. And it is often more difficult for a company hire you due to extra liability or disability costs made to accommodate you.

Even when your own health is good and you are taking care of someone who is disabled, it affects your finances through the type of jobs you take, health insurance, medical bills and supporting the rest of the family.

My husband has lost multiple jobs because my health care and insurance costs were too high for his employers. They found or invented reasons to let him go, such as missing too much work because he had to take time off to drive me to appointments. One company fired him for entering the parking lot without scanning his badge at the guard gate on the way in, a common practice in the mornings when the line to enter the lot was long.

For all of the reasons above, I believe that health wealth is the most important when it comes to living life to the fullest. It takes the most effort and action of all four types of wealth.

We strive to improve our health wealth so that we can live better lives. We don’t have the luxury of waiting for retirement to enjoy ourselves, so we must find and create moments when we can use our time and social wealth. They are the two most easily obtainable when living with chronic illness and striving for health wealth.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy 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.