What Is End-of-Life Care?

By Dr. Forest Tennant and Kristen Ogden

The Medical Board of California’s new Guidelines for Prescribing Controlled Substances for Pain are futuristic and practical.  They recognize that persons who need intractable pain or “end-of-life” care may often require a non-standard medical program, so the board made these two conditions exempt from any limitations on dosage or treatment.

In our recent column on the guidelines, we clarified the meaning of intractable pain and suggested criteria for identification of the intractable pain patient who requires non-standard drugs and dosages. This column does the same for “end-of-life” care. 

The California guidelines define end-of-life care as “for persons with a terminal illness or at risk of dying in the near future whether in hospice care, hospitals, long-term care or at home.”  Note that this definition does not include palliative care, whose definition is frankly now in limbo, because medical textbooks define it as “symptomatic rather than curative care.” Third party payers only recognize palliative care as being in the last few months of life.

How does one identify a person who needs “end-of-life” care?  California actually has a law which helps identify the person who needs end-of-life care.  Such a person “is suffering from an incurable and irreversible illness that will bring about death within one year if the illness takes its normal course and the treatment is for pain control and/or symptom management rather than to cure the illness.” 

In effect, this definition includes intractable pain patients who are not expected to live more than a year without treatment.  Severe intractable pain, regardless of cause, if left untreated will result in malnutrition, immune deficiency, cardiac or adrenal failure, and a shorter life. 

To our knowledge there are no formal criteria published for clinicians to determine when there exists high risk of death within a year.  Here are criteria used and suggested by us: 

1. Patient has a known disease that may shorten life, such as cancer, adhesive arachnoiditis, head trauma, and Ehlers-Danlos syndromes.

2. Pain is constant and interferes with activities of daily living as reported by a close family member.  Examples are inability to eat, toileting, mobility, hygiene, and dressing.

3. Bed bound and immobile for many hours of each day.

4. Malnutrition, evidence of tissue loss, poor skin turgor (rigidity), and/or weight loss.

5. Family reports inability to normally read, answer questions, or socially respond.

6. Some alterations in normal physiologic functions such as blood pressure, pulse, and hormone levels.

We encourage clinicians to use our criteria for “end-of-life” care or develop some specific alternative criteria.  Too many seriously ill intractable pain patients have been denied care until it was too late.  An “end-of-life” case may begin at any age, be it 14, 40 or 80 years old. 

Many, if not most “end-of-life” patients meet terminus within a year. But some persons turn things around with adequate intractable pain care and live much longer.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain. The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

Kristen Ogden is a patient advocate from Virginia. Kristen and her husband Louis travel regularly to California for his intractable pain treatment and prescriptions, which are not available in their home state.

The Way Forward: California’s New Opioid Guidelines

By Dr. Forest Tennant and Kristen Ogden

The Medical Board of California recently published new guidelines for prescribing opioids and other controlled substances for pain, which emphasize “individualized care” that is customized for each patient. 

The guidelines are a remarkable, positive and practical way forward in pain care. All persons concerned about chronic pain treatment with opioids, benzodiazepines and other controlled drugs need to know the basic concepts embedded in them.    

As the medical board was updating its guidelines, we had great concern that they would bury California’s Pain Patient's Bill of Rights and Intractable Pain Treatment Act. When these laws were passed in the 1990’s, they were a godsend to patients with chronic intractable pain, who were given the right to “request or reject the use of any or all modalities in order to relieve his or her pain.”

That means patients, with the support of their doctors, could get opiate medication without first having to submit to surgery, medical devices and other forms of pain treatment.  

To our great pleasure, the medical board’s new guidelines recognize, define and support these worthy laws.  Importantly, the guidelines also state that they are “not in any way intended to limit treatment” of patients in hospice or palliative care. And they allow for doctors to prescribe high dose opioids, provided they keep good medical records that document a need for them.

Defining Intractable Pain

The California guidelines provide a classic definition of intractable pain as “a state in which the cause cannot be removed or otherwise treated and no relief or cure has been found after reasonable efforts.” 

The problem with this definition is that intractable pain may be mild or intermittent and not curable, but may still be treated with non-opioid modalities. To require and receive treatment with opioids and other controlled drugs, one really needs a specific causative diagnosis of the unremitting “high impact” pain that produces physiologic complications such as hypertension, tachycardia, and endocrine deficiencies. 

Put another way, is intractable pain an incurable but treatable problem? Or is it constant and incurable with potentially life-threatening complications? 

Physicians, as a group, are often mystified, confused and unaware of how to determine which patients have an incurable, but readily treatable problem, and which patients have the constant and incurable pain that causes complications and require opioid therapy.

Physicians need help to make sound, defensible treatment decisions in the face of this quandary.  Some patients with complex intractable pain are greatly impacted and require non-standard treatment, which may include high-dose opioids, benzodiazepines and stimulant drugs. 

Here are the recommended criteria to identify such patients and support non-standard treatment plans.

1. A specific medical cause of intractable pain has been identified.

2. Constant pain has impacted some physiological and/or mental functions such as sleep, eating, hygiene, reading, concentration, and mobility.

3. Trials of standard medications and dosages with such agents as anti-depressants, muscle relaxants, anti-inflammatories, stimulants, anti-seizure medications, and low-dose opioids have not controlled pain or normalized functions.

4. There is objective physical evidence of the causative disease or complications of the pain, such as hypertension, tachycardia, neurologic deficits, or anatomic structural abnormalities.

5. There is an objective, diagnostic test result that documents an abnormality of the cause of pain or its complications, such as a magnetic resonance imaging (MRI), hormone deficiency, elevated autoimmune or inflammatory marker, or an abnormal electrodiagnostic test.

It is the lack of adequate treatment of complex intractable pain that is really the crux of the suffering and deaths that have emerged due to overzealous and misinformed opioid regulations and guidelines.  These legitimate, complex patients comprise about 3 to 5% of chronic pain patients.

The California medical board’s new guidelines provide clinicians the opportunity to implement individualized and effective treatments for these unfortunate and deserving intractable pain patients. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain. Dr. Tennant was the lead physician in crafting California’s Intractable Pain Law and Pain Patient Bill of Rights, and worked with the legislature to get them passed. 

Kristen Ogden is a patient advocate from Virginia. Kristen and her husband Louis travel regularly to California for his intractable pain treatment and prescriptions, which are not available in their home state. Kristen testified during public hearings on the California guidelines and closely followed their development. 

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

A Pained Life: Let the Words Flow

By Carol Levy, PNN Columnist

I ended my last column with my favorite saying: “You don't know what you don't know. And if you don't know what you don't know, you don't know what to ask. Our doctors need to ask.”

A couple of days later, I thought about the column and my second appointment with a neuro ophthalmologist, a specialist in nerve disorders that affect the eye.

I didn’t know that my parents were still carrying insurance on me, so I was going to a low-fee clinic in New York City, where I lived at the time.  It took almost a year, but finally one of the residents there decided I had trigeminal neuralgia. Even with a name for my condition, they still didn't have a clue what to do for it. Or with me.

When I realized that I could afford to see a private doctor, I returned to one I had seen years ago.  He referred me to the specialist.

The first appointment did not go well. He told me the disabling, horrendous facial and eye pain I had were caused by anxiety. At the end of the appointment, he patted me on the head, handed me a prescription for an anti-anxiety drug, and sent me home.

I was mad. Another "I dunno" exam that ends with a doctor saying, "It's psychosomatic." I debated if I even wanted to keep the second appointment, but what else could I do?  A feeling I think many of us have.

At the next appointment, I repeated my story of how the pain started, what it felt like, and what it was doing to me.  Again, he was unimpressed. He turned away from me, saying nothing.

Then, just to fill the silence, I said "You know, the other day, for a few seconds, I thought the pain was done and gone."

He abruptly turned back towards me. “What made you think that?” he said, the vehemence in his voice surprising me.

“Well, a lady on the bus inadvertently touched the left side of my face, where the pain is,” I explained. “And the pain didn't start. I was so, so happy. Until about 20 seconds later, when the lightning bolts came.”

The doctor walked over to me, and without missing a beat said, “I think it's time we brought you into the hospital.” I was startled and dumbfounded. In the span of a minute, he went from nonchalant to alarmed. I didn't think to ask why.

I was in the hospital for 52 days. After many tests and workups, they decided I should have brain surgery. The surgeon would cut away the numerous tiny little blood vessels that were wrapped around the part of my trigeminal nerve that gives sensation. The surgery only worked for three months, but it was a glorious three months.

Sometimes, it's the minor things: a change in the way pain feels, a new area of pain, or a change in how and when it happens. We may think, why bother the doctor with this? He won't care anyway. It's unimportant. If I tell him, he may think I'm a dolt or making things up. I’ll keep it to myself.

Which brings me to my second favorite saying: “You don't know what you don't know. And if you don't know what you don't know, how will you know if it matters?” 

Sometimes our deciding what a doctor doesn't need to know may be the one thing he needs to know the most. It may really matter. So let the words flow.

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.

My Story: A Bone Cancer Survivor’s Search for Pain Relief

By Kristen Hernandez

The past three weeks have been the most challenging since my cancer diagnosis 20 years ago. Shortages of opioid pain medication have taken their toll, costing me weeks of productivity, mental and physical anguish, and a negative bank account.

When I was 25, I had a different life -- a career as a corporate travel consultant for RCA Records in New York City. I clawed my way out the ghettos of the Bronx and into corporate America, and purchased my first home in the suburbs of Long Island.

But everything changed when I was diagnosed with an insidious and rare form of bone cancer called Chordoma. It’s a literal one-in-a-million disease, with just one in every million individuals diagnosed with it each year.

The type of Chordoma that chose me is extremely rare, due to the tumor’s location: it was housed inside the L3 vertebra of my lumbar spine. And it was extraordinarily painful.

KRISTEN HERNANDEZ

Because Chordoma doesn't respond to chemotherapy or radiation, surgery is the only treatment. To save my life, surgeons reconstructed my spine, replacing a vertebra with a titanium cage and filling it with bone graft from my hip.

They also replaced a spinal disc with two more titanium cages, adding 16 rods and 20 screws for reinforcement.

My spine today resembles a nightmarish ladder that Tim Burton might have created.

After eight reconstructive spinal surgeries, I was given a miraculous drug called OxyContin. Doctors did not think I’d ever walk again because they needed to sever the nerves to my legs so that they could remove the cancer-infected bone.

Because of OxyContin, I was able to take my first step and eventually walk. This was in 2005, at the beginning of the so-called opioid crisis.

Once I relocated to Florida, pain management doctors refused to prescribe OxyContin to me, fearing lawsuits and scrutiny from law enforcement. Regardless of how much I protested, I was dismissed as if I was the problem, instead of having a problem.

At the time, pill mills were everywhere in Florida. They were places where if you had cash, you could get any medication. It’s also why there’s a such stigma today against chronic pain sufferers.

Eventually, I found a legitimate pain management doctor in Fort Lauderdale. Instead of OxyContin, he changed my regimen to a fentanyl patch, along with oxycodone/acetaminophen tablets (Percocet) for breakthrough pain, essentially replacing one opioid with two. That was my pain management routine for the past twelve years, until recently.

When I went to a Walgreens pharmacy this past June, I was shocked to hear, “Sorry, oxycodone is on back order, and we have no idea if or when it’s coming back.”

Opioid Shortages

Shortages of oxcodone, hydrocodone and other opioids are increasing around the country. And there is zero advance notice from pharmacies about when a prescribed medication will be available. Patients like me who suffer from severe pain are forced to go through withdrawal until the pharmacy restocks.

It’s a nightmare to deal with. Pain patients are usually not prepared for the sudden halt in medical care. Even the smallest disruption can have devastating effects, such as loss of productivity, reduced quality of life, and a diminished social life. Even smiling takes an effort.

Patients are always the last to know when there’s a problem with a prescription. Like thousands of others, I made frantic phone calls to my doctor, who scrambled to find an alternative medication. Without consulting me, he wrote a script for hydrocodone/acetaminophen (Vicodin), a medication I had never taken before. That’s when my three-week nightmare began. Because I wasn’t prepared to handle the ineffectiveness of hydrocodone for bone pain, my condition quickly began to decline.

Each morning, the first sensation I get feels like someone dug their elbow into my lower back all night long. It’s so fierce, it takes my breath away. Then, when I stand and all the titanium in my spine settles, the nerves hum in my legs and a crawling sensation shoots up and down, vibrating constantly.

As the morning coffee brews, I get the “poke” sensation. Due to a 200-pound weight loss, there’s a rod that sticks out of my thoracic spine area that rubs up against everything -- the bed, couch, office chair, car seat, everything. It’s miserable because it’s there forever.

Hydrocodone/acetaminophen tablets seem to exacerbate those symptoms, causing my body to swell and tighten into a ball of pressure, while the pain intensified. My productivity stopped and the bills began to pile up. Working while experiencing severe spinal and bone pain is nearly impossible.

After a recent candid discussion with my pain management doctor, we formed a “Plan B.” We’re trying oxycodone without acetaminophen to see if that works better. Having a backup plan with an alternate list of medications is essential with the shortages and fear-based drug culture we’ve found ourselves dumped into.

Government regulators and health policies have failed the people who suffer the most in this country, who often live with medical conditions they cannot control, like cancer. They’ve failed us time after time, filing lawsuits and adopting guidelines that make it harder for us to get prescription opioids – even though over 82% of opioid overdoses are caused by illicit fentanyl and other street drugs.

Patients who suffer from chronic pain all have one common goal: relief. When that relief is interrupted, and access to crucial therapies and drugs is denied, you leave us with few choices. We can either live our lives without pain relief or seek out riskier alternatives. Those are not good choices.

Kristen Hernandez is a freelance journalist and creative nonfiction writer living in South Florida. 

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org.

Why Being ‘Strong Enough’ Isn’t Good Enough

By Mia Maysack, PNN Columnist

"It takes so much to be able to get this treatment for myself," I told the nurse, as I was being hooked up for a life-giving infusion.

After answering an inquiry about my arm preference for "a poke," we laugh about needle sticks being the least of my worries, because I am covered in tattoos -- pain I had the privilege of choosing.

A moment of comfortable silence passed and then I proceeded to express my gratitude for being there in that moment. And for still being here on this planet, period.

"You're just so positive! Wow, what amazing energy you have!" the nurse told me.

Me to Me: “I barely made it here today.”

The moments when I feel unable to go on are plentiful. I'm still unsure how to live this life, but as the saying goes, I am "strong enough" and “tough enough” to endure. 

I don't know about that…

I've decided it's perfectly okay to have moments when I'm absolutely not strong enough. Strength of will isn't measurable. Neither is the resilient fortitude that continually gets tested on a daily basis when you have unmanaged and permanent pain.

Me to Her: "Thank you. That’s very kind. There are no words to express how hard I try."

I close my eyes as I feel the tears ascending. I breathe deeply and reflect on a reason, any reason, every reason, to smile.

The first thing I'd tell anybody about “being positive” is that it’s not where strength comes from.  It sounds ideal to seek out bright sides, silver linings and rainbows, but positivity can also be inauthentic and inadequate. At least it has been in my experience.

There’s a difference between pushing through pain, as opposed to masking it. The “fake it until we make it” mentality only takes us so far, and doesn’t actually work when it comes to dealing with pain.

Pain of any kind, I’ve come to believe, is a message that something needs addressing. It’s the body’s way of communicating. Many different issues can arise as a result of this, especially when pain is untreated or its fundamental causes and symptoms are overlooked. Pain will then intensify and worsen, leading to a severely diminished or low quality of life, if not the ultimate decision to put an end to it.

I've had enough years when my ailments would throw occasional tantrums and demand my attention. But that did not change the pain’s existence or ease the constant requirements for attending to it.

I’ve learned that approaching things with a mind-frame of coexistence, as opposed to constantly battling them, works better. There’s less emotion and mental torment, if nothing else. That right there can make a major and empowering shift.

Another thing I’ve decided is that since this is the hand I’ve been dealt, I’m going to play it as absolutely best I can, with a ferocity to make the most of each moment to whatever extent that may be possible. Sometimes this means doing what would appear to be nothing, when in actuality things are healing and restoring.

This realization also means accepting that the pain is going to exist anyway. And things are going to hurt anyway. I no longer reflect upon that as a reason to be strong, but rather as an excuse for celebrating each small victory.  

It takes everything within me to continue existing from one day into another. To function in a meaningful way and contribute somehow to our world.  My life is not as painless as it looks. You may see me living, but miss what it takes for me to live.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

My Story: Riding the Merry-Go-Round of Pain Care

By Christopher Matthews, Guest Columnist

About two and a half years ago, I began to feel a tight painful knot on the side of my neck. Any movement would trigger an intense shock up the back of my skull to the top of my head. Ultrasound, MRI and X-ray scans all came back negative, so we tried anti-inflammatory medications, ice, deep tissue message, chiropractic, and some lifestyle changes.

Over the next few months, the pain began radiating to my cervical spine and intensified. No OTC pain medication was touching this pain.  It felt like a hot steak knife was lodged in my back. The constant, unbearable pain and symptoms of neuropathy seemed to indicate that some minor disc bulging in my spine may be more severe than we thought.

It took 4 months to get an appointment with a specialist in neurosurgery at a prominent hospital in Massachusetts. The surgeon looked at me for 5 minutes and ordered more tests. They found some abnormalities in my arms and legs, but the imaging didn’t warrant surgery. They recommended that I see a neurologist, which meant waiting another 5 months for an appointment.

During the interim, my primary care doctor wanted to be proactive. She was the only one taking me seriously. I did physical therapy 3 days a week and about a dozen courses of oral steroids. I was hopped up on cortisone for months. I also had a series of injections into my spine. None of it seemed to help.

I finally saw the neurologist, who ordered another MRI, which showed the bulging discs in my back were getting worse. But I was still not a candidate for surgery.

I’ve now been hospitalized 4 times due to loss of function, pain flares or passing out from pain in public places. The pain is that bad. Some days I can’t even get out bed because my knees won’t work. Some days I have close to no use of my arms, because my elbows are on fire. I’ve been getting more and more bacterial infections.          

My primary care doctor is the only one who believes my pain is real. She showed mercy and set up a pain management contract with me. We started with 5mg hydrocodone/acetaminophen 3 times a day. I had never touched an opiate before in my life. What a relief! I was so happy I could cry, just for a few hours of pain relief.  

I got a second opinion from another neurologist, who ordered more imaging and blood tests. The images came back as they have in the past, but the blood tests also showed there was severe inflammation – a possible sign of autoimmune disease. So off to rheumatology I go. 

After another 5-month wait for an appointment, the rheumatologist orders more blood tests and an in-depth panel for autoimmune disease. Eight of those tests come back elevated and 4 of them are so high they’re alarming. I think to myself, “This may be terrible news or it may be good news. Either way, I’m finally getting a diagnosis.” 

Not even close. I get all these test results sent to me in an app, with a message from the doctor saying everything “looks fine.” He suggests aspirin and ibuprofen, and that I get off the hydrocodone.  

I lost my temper at that point. How dare you insinuate I’m drug seeking! Like I didn’t try every other option first. All those needles driven into my spine, the steroids, and off-label antidepressants. The months of physical therapy, chiropractic and emotional therapy, all before finally resorting to actual pain medication. 

Some of these doctors and pharmacists with their discriminatory attitudes and actions are disgusting. If it was about the drugs, I’d drive 10 minutes into town and buy them at a fraction of the price I pay at the pharmacy.  

This whole ordeal between deductibles and loss of wages has easily cost me over $100,000. I could have done so much with that money. My wife would have her student debt paid off by now. Instead, it all goes into the for-profit healthcare system. We’re not patients, we’re profits.  

Being on opioid medication now for 2 years, I cannot function without them. Without my pain medication, I feel like someone with industrial grade tools is trying to physically remove my head from my neck. 

CVS is a nightmare and the other pharmacies aren’t any better. They give you that look when you walk in or call to check on a prescription: “Oh, it’s you again. We spoke last month. You’re too early. We know why you people do that.” 

Excuse me, but I’m allowed to pick up my medication the day before I am out, so that I have medication available when I wake up the next day. So that I don’t have call you at 9am when you get in and then have to wait until 3 in the afternoon to pick it up. 

For a while, CVS was taking GoodRx coupons, which cut my insurance price in half. Recently, they told me there’s a new state law that prescription coupons were no longer valid for opioids. I checked with the state and no such law exists. The pharmacist does have the right to turn coupons away, but they flat out lied to me and said it was someone else making them do it.   

The number of days I’ve gone into withdrawal with brutal pain I wouldn’t wish on my worst enemy. All because CVS can’t find the prior authorization or they don’t tell me they are out of stock until I’m at the window to pick it up. Or some other excuse they can drum up. Just so they don’t have to give this “junkie” his drugs. It’s sickening.   

Now, all of a sudden, I can’t get hydrocodone of any dosage at any pharmacy within 50 miles of me. And none of them know when it’ll be back in stock. I found one pharmacy that had a three-week supply of hydrocodone, but by the time I got it called in and got there they said they only had two weeks supply for me because another patient needed a week.  

I’m officially up shirts creek without a paddle and don’t know what to do. I’m in the most pain I’ve ever felt in my life. It is 24/7 and unrelenting. It’s destroying my life, my marriage, my chance at children, my business, and my finances. I get sent from one specialist to another, and at each stop on the merry-go-round they extract $5 to $10 thousand from me in out-of-pocket tests.   

I’m not sure how much longer I can take it.  

Christopher Matthews is a pseudonym for the author, who asked that his full name not be used. He is 35 years old and played 3 years of professional soccer after graduating from college.

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org.

What Doctors Should Ask Patients in Pain

By Carol Levy, PNN Columnist

I learned in childhood to keep my mouth shut if I had pain or was feeling sick. My siblings would say, "Stop your whining. Just go to your room if you're feeling so bad, so we don't have to hear about it!"

I learned to say nothing, no matter how bad I felt.

That is how I still handle it today. When I see a doctor about my trigeminal neuralgia pain or some other pain, they’ll often say, “Your pain can't be as bad as you say. You don't act like you're in pain.”

I was at the neurosurgeon's office. One of his residents wanted to touch the left side of my face and I wasn't sure why. Maybe to see what I would do? He knew any touch to the affected area would set off horrible, terrible pain.

“Are you ready?” he asked before touching me. His finger hit the mark and I instinctively jumped back, but didn't make a sound. The resident looked at me; like he was waiting for a cry, scream, wail, or any normal vocalization of pain. Instead, I was silent.

“Are you okay?” he asked, somewhat warily. He didn't realize I was literally unable to answer. My childhood lesson not to speak about pain had morphed into mute silence as an adult. I was speechless; my larynx unable to produce a sound.

I cleared my throat a few times in an effort to speak, while raising a finger in the universal sign of “wait.” After a few minutes, I was finally able to speak, but my words would not come out clearly.  Once triggered, the pain takes its own sweet time before it settles down.

My words were interspersed with more throat-clearing: “I can't, hahahem, speak when the, hahahem, pain is triggered.” 

Others who have chronic pain usually say the opposite: “When a doctor sets off my pain or I am in pain, I have no choice. I scream, I cry or I curse. I make faces and grimace.”

It is an automatic response. And often the doctor's reply in words or facial expression is, ”I don't believe this act you're putting on."

So what's a pain patient to do? What's a doctor to do?

For us, it's simple. If the doctor says, “It really isn't necessary to be so loud and to use profanity, or to wail and scream. In fact, it makes me think you're being overly dramatic.”

We need to reply in a way that says, “Doctor, this is what I do to express my pain. It may be unusual to you, too loud, or too unpleasant. But it is the only way I know how to express it.”

The doctor on the other hand? He doesn't know unless he asks a key question: “How do you let others know if you are in pain or what your level of pain is? Do you express it by crying or with grimaces? Or do you become silent?”

It comes down to one of my favorite sayings: You don't know what you don't know. And if you don't know what you don't know, you don't know what to ask. Our doctors need to ask.

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.

‘Take Care of Maya’: The High Cost of a Mother’s Love

By Cynthia Toussaint, PNN Columnist

Netflix’s top-notch documentary, Take Care of Maya, was excruciatingly painful for me to watch because it hit so close to home. I related on many levels: the disease, maltreatment from healthcare professionals, being labeled crazy, the family breakdown, and the pursuit of justice. But the dagger to my heart was the price paid for a mother’s love.

Like me, the protagonist, Maya Kowalski, has Complex Regional Pain Syndrome (CRPS), but the over-riding message of the film is about something far more insidious. It lays out the abusive extremes some health and social care systems take to make a buck at the cost of patients and their families. Sometimes that price can be unimaginable.

In Maya’s case, her parents were falsely accused of child abuse, specifically making their daughter ill for their own gain, a disorder known as Munchausen by Proxy. This misguided allegation led to Maya being kidnapped by hospital administrators, who then barred her from seeing her family, all while the 10-year-old’s physical and emotional pain became increasingly worse.

It was horrifying to watch Maya’s family unravel under the strain of this prolonged nightmare, in particular her bold and unflinching mother Beata’s relentless confrontations with the powers that be.

After multiple failed attempts to reverse matters in the courts, Beata, the focus of the abuse allegations and the target of the hospital’s ire (***spoiler alert***), became increasingly despondent to the point that she hanged herself to give her daughter the best chance of getting back home.

‘They’re Killing My Daughter’

I’m guessing that many who watched the documentary found its facts too fantastic to be true – and there was a time when I might have agreed with them. But I’ve lived too much of this story to question it now.

In my early 20’s, when it was clear that my still unnamed disease wasn’t going away, my mother became progressively distraught over watching my life slip down the rabbit hole. It’s fair to say my recovery came to be her over-riding obsession.

Mom wrote 200+ searing letters, sometimes demanding, at other times begging my HMO to diagnose and treat me. She spent large swaths of those years on the phone in desperate attempts to get me, as she coined them, “no-care” appointments, all in the hope that a compassionate physician or administrator would at last hear her pleas and change my course.

My poor mother became more and more unglued and unwell from the abuse, aimed first at me and then toward her, from this evil empire. She developed life-threatening heart problems and her legs, addled by aching varicose veins, went from bad to worse from constantly lifting me. Perhaps my most distressing memory of those dark days was when I’d hear her full-volume moans emanating from out-of-control sadness.  

One day after my HMO dropped the ball on an appointment we’d driven miles to attend, Mom snapped with rage. With super human strength, she hoisted my 50-pound wheelchair in the parking lot and smashed it into her car. As I cried in fear, she repeatedly bashed away.

“They don’t care about my daughter!” she screamed. “She’s dying! They’re killing my daughter!”

During this time, I was terrified for my mother’s life. Though it never crossed my mind she would take her own, I was hounded incessantly with the thought that she would succumb to a stroke or heart attack.

Maya’s mother made the ultimate sacrifice by taking her own life to save her daughter’s. Some might say that was tragically misguided, but I’m certain Beata’s intentions were true and real. My mother said to me on more occasions than I care to remember, “If cutting off my arm would make you well, I’d do it.” I never doubted her.

After fighting my HMO for nearly a decade with no tangible results, not even a diagnosis, my mom pulled up stakes, but in a different way than Beata. Mom moved to New York to pursue her long-delayed acting career. When I confronted her about feeling abandoned, she explained her reasoning. “Maybe if I go, you’ll get better by doing more for yourself,” she told me. It didn’t have to be logical.

In Beata and my mother’s desperation to somehow, someway fix impossibly tragic situations for their daughters, both made questionable choices out of love. It’s true, the path to hell is paved with good intentions, especially where chaos and heartbreak intersect.

Like Maya, I couldn’t just fold tent and walk away from the institution that did me wrong. Sure, I wanted justice for me, but also for my mom. I became a spokesperson and a whistle-blower for HMO reform in California, hell bent on exposing all of their atrocities. I did get a number of licks in, multiple high-profile media stories that helped change public opinion, which helped pave the way to sweeping legislative reform.

In retrospect, something I think of quite a bit these days, the cost was too high. I’m harassed by this entity to this day and they were successful in killing much of my most important work. In short, the fallout from my justice-seeking made me sicker and sadder over the decades, taking away more than it gave.

When I see Maya seeking justice in her mother’s name, I have great respect for her, but also concern. This young woman is now in remission and, going forward, my prayer is that she puts her health front and center. After poignantly telling her story on a world stage and prevailing in the courts (which I believe will mercifully happen soon), I hope Maya will step away with the knowledge that she’s done enough, and never looks back. It’s time to save herself.     

It’s also time to grieve, maybe more than anything, the loss of a mother’s love.    

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

5 Lessons I’ve Learned About Chronic Pain

By Barby Ingle, PNN Columnist

Do you ever feel like your time, energy and hope are running out due to chronic pain or illness? That you aren’t living life to the fullest and may never be able to?

Many people who live with painful disabling conditions have that kind of fear and self-doubt. If you are struggling with similar thoughts, read along while I dive into the five most meaningful lessons I’ve learned about chronic pain.

I wish I had known these things when my journey through the American healthcare system began. I strive to be healthier and wonder if my wellness would be further along if I had known better from the start.

The good news is that changing today can affect your tomorrow. It is never too late to make improvements in your life. Whether you are a longtime chronic pain patient or just starting on your pain journey, these five insights may help save you some heartache and frustration. 

1.  Keep good medical records 

I have long been a proponent of keeping and updating your medical records.  Use technology to your advantage. Advances in health information technology make it easy to store and retrieve data, and facilitates the rapid exchange of patient information. This can help you file insurance appeals and when seeking prior authorizations.

When a provider closes down unexpectedly, having medical records from your patient portal either printed or downloaded in PDF form can also help you find a new provider. This is something I faced this year when my ketamine provider abruptly shut down.  

2.  Not all providers are equal 

Learn everything you can about your illness and keep learning. It is also essential to seek specialists who know about your complex medical condition.

People often look up to their doctors and put total faith in them. However, most doctors are educated and trained in only one specialty in the practice of medicine. Just because a doctor is a neurologist doesn’t mean they can treat diabetic neuropathy, multiple sclerosis or Lyme disease. 

Providers may have expertise in treating one or two conditions, and know only a little about others. With thousands of diseases, conditions and treatments, no provider can know them all in-depth. Learn about your provider's experience and limitations, and encourage them to seek additional knowledge from their peers to help you. Communication is the key to improving trust and faith in your treating doctors.

3.  Your diagnosis does not define you 

In medicine, a diagnosis refers to a specific disease or illness, but not the characteristics of each patient. A condition may present itself and progress differently, depending on the patient’s genetics, lifestyle and environment.

I was once given a diagnosis of thoracic outlet syndrome (TOS) when I was exhausted, over-treated, and scared. It turned out that was an incorrect diagnosis and that the TOS-like symptoms I was having were secondary to the real cause: Reflex Sympathetic Dystrophy (RSD).  

We need to be careful not to jump to easy conclusions. I also realized I had to stop comparing my symptoms and outcomes to others with the same condition. I turned my focus on creating the best me I could be. 

4.  If something is too challenging, break it into smaller pieces 

Do the more manageable actions first, and then see what is left to conquer.

Tackling one problem – like organizing medical records from a single provider -- can give you the positive momentum to take on the more challenging ones. If you find yourself having difficulty -- stop, take a break and work on something else. Get that feeling of success (and the endorphins that come with it), and return to the challenge when you are ready for it. 

5.  Share your journey 

Each of our journeys are unique, but hearing someone else’s experience can offer us hope, options, and ideas that we can use to improve our own lives.

For example, I’ve found that hydration is super essential for coping with RSD. My primary care doctor said I should drink water regularly to help regulate my body temperature, keep my joints lubricated, prevent infections, replace nutrients in my cells, and to keep my organs functioning correctly.

He was right. I learned that when I consistently drink 60-70 oz. of water daily, take my medications on time, and do light stretching, my sleep, cognition and mood also improve.

Continue to share and cultivate habits that support your long-term health and happiness. The more we know, the better our decisions will be. I’ve dedicated my life to helping people with chronic conditions have happier and more meaningful lives. The key is to believe in yourself while building the life that you want. After helping thousands of people worldwide and reading countless success stories, I am confident that you can do that.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com.    

Why You Shouldn’t Be Afraid to Ask for Help

By Barby Ingle, PNN Columnist

We all have lives to lead and sometimes we must focus on ourselves before we can help others. There's nothing wrong with that.

But what if your health (or lack thereof) prevents you from accomplishing something good for yourself and others? What can we do to become more independent and productive while living with a chronic pain condition or disease? 

Here are three things to consider:

1. Social isolation is not healthy

2. Independence can be healthy

3. It's okay to ask for help  

One of the people in my life is the most independent person I know. “Em” only asks for help when she needs it, but often fails to recognize when the need arises. If Em asked for help more often, things might have gone differently in her life and been much easier.

I've been thinking about this recently. I've been balancing my need for independence as a person in pain with my desire to be more open with people. We all want to feel more independent from our caregivers, family and friends. But we also want to stay connected. Seeing some of the challenges in Em’s life reminds me to ask for help more often.

In my books and columns, I have freely shared my life experiences, tips, tools and resources to help others. That helps me feel open and transparent, but it's usually about things I have been through and already found solutions for. When faced with a new challenge, I recognize that I isolate more than I should.

Like my friend Em, I need to find more ways to connect and ask for help when needed. We all need support from others, even if it's just someone listening or offering advice on handling a situation.

When I’ve asked for help, it didn't always go how I envisioned. I may have asked the wrong person for support or had expectations I put on that person that they could not live up to. I had to learn to be okay with the service they offered, rather than be upset and sad when they could not provide what I expected.

The more I learned about their strengths and what they could do, the better I felt asking for their assistance. Asking for help shows that I trust them enough to let them into my world. When you ask for help, you are not weak. You are human.

Asking is not always easy. You have to stop pretending that you can handle everything yourself and that everything is fine. You need to accept the support of your friends and family without feeling like you’re burdening them or making them feel bad about themselves. Asking shows them how much they mean to you.

Here is an excellent example of a recent conversation I had with Em about a friend who wanted to be more social and live life more fully. Em recognized her own limitations. 

"She asked me to meet with her more regularly. Saying she needs people in her life at this difficult time. I am unable to 'be there' for people. I am okay with hanging out occasionally, but I barely have the energy to do basic things each day," Em told me.

My response to Em was this:

"I get it. Explain that you are a chronically ill patient and enjoy connecting when you are up to it, but physically hanging out or texting, talking and engaging cognitively takes a toll on your energy and health. You understand her desire to remain social and the life challenges it takes to follow through. You do best by text, when you have the flexibility and health to answer. You understand her need to be flexible too. She will be in your prayers. Tell her not to be upset if you have to turn down an invite. It doesn't mean you don't want to connect, just that you will participate when you can." 

We must learn how to manage our emotions better so that they don't rule our lives. That means taking a step back so that we don't make decisions while in the middle of a panic attack or depressive episode. And sometimes we just need to hear the answer and decide what to do with it.

Asking for help is complex and we won’t always get what we want. At the same time, we have to step out of our discomfort to make social connections, take down our protective walls, and connect with humanity. Being your best advocate, having others in your life, and maintaining boundaries will help you live life to the fullest. 

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com.   

Painfully Stepping Over the Line

By Cynthia Toussaint, PNN Columnist

For decades, people have described me as indefatigable, super-human strong and the ultimate survivor. Or the one filled with surprises and miracles. Well-intended compliments that have moved me and, during dark times, spurred me on. But now these tributes vex me because I don’t know if I can live up to them.

Maybe I’m just tired of fighting the impossible.

My latest cascade of battles began in 2019, after getting a breast cancer diagnosis and not knowing whether I’d choose treatment due to Complex Regional Pain Syndrome (CRPS). While pushing back on my oncologist’s recommendations, she pulled out all stops in an effort to convince me to fight for my life. She asked, “Can you imagine yourself not doing treatment and regretting it?”

I furrowed my brow and replied, “I’m more concerned that I’ll do treatment and regret living with the damage afterward.”

I was terrified that cancer care, in all its cutting, burning and poisoning glory, would ignite a red-hot mess of CRPS, sending me back to my bedridden days and zeroing out any quality of life I’d clawed back over the decades.

I drew the line. To move forward with treatment, I had to have a life worth living at the other end.

I chose to only do chemo and miraculously lucked out, cancer and pain-wise. When my cancer returned a year and a half later, it appeared I’d skated by again, until I didn’t. While the immunotherapy knocked the tumor out in short order, little did I know that with each infusion my immune system was amping up to push me over the line, but in a way far worse than I could have imagined.

By mid-March, my lap swimming, my go-to for health and freedom, became a painful hell. I couldn’t push off during flip-turns, one leg barely kicked and my neck screamed in agony each time I turned for a breath. I had no choice but to quit.

Soon walking was near impossible: slow, labored and almost shuffling. My knees swelled to the point they wouldn’t allow me to get up from a chair or couch. Frantically, my partner, John, got a raised seat so I could use the toilet. I started losing weight because the pain in my jaw made eating torturous.

Screaming often through the days and nights, I felt hatchets and icepicks throughout my body, grinding glass replaced my joints. When I could sleep, I woke often with fever and chills.                   

After scads of labs, internet research and clinical assessments, I’ve learned that I’m the proud owner of a brand, spankin’ new disease: Reactive Inflammatory Arthritis. I’m now living the experience I feared most, the place where I told myself I couldn’t, wouldn’t go. I’ve stepped over the line, terrified it’s a one way ticket.      

To dampen the inflammation and stabbing pain, hell, just to get me moving, my doctors put me on low-dose naltrexone and prednisone (the latter I swore up and down I’d never revisit.) For that blessed comfort, the cost is mighty. I’m zonked out and joyless while insomnia, constant dizziness and the constipation-diarrhea seesaw zap my quality of life.

With the drug relief, I’m mercifully dipping into a warm therapy pool where I can move, walk and swim some, offering vague hope of recovery. But I see the troubled look in the eyes of my Y friends, the wish that their feisty, frothy friend would reemerge. I can’t help but wonder if they’re playing witness to my slow down and out.         

In my darkest hours, when the arthritic pain makes me question whether I can survive another five minutes, I rock with anger that my tumor’s gone. That was my ticket out. The jokes on me as I live the cancer-free dream. Cue the laugh track. I’m not living and free is nowhere to be found.

When my better angels reappear, I remember why I fought twice, tooth and nail, to see another day. I want to live, to love, and to see the beauty all around me. I want to continue to be a force for good.

Ahh, but that pesky line. I’ve got to get back over it. Or do I? When I got sick 40 years ago, I swore I wouldn’t live on if I couldn’t continue my showbiz career. I was utterly convinced life wouldn’t be worth a damn without it. Yet, here I am, staring down that line again. Maybe, MAYBE there’s some wiggle room one more time.     

I imagine all of us who’ve lived with high-impact pain over the long haul have drawn that line. Then later, took out an eraser and drew it again, renegotiating the terms. At another time, when we drop below, we grasp and beg as we slowly, savagely eek back over. Or not. It’s ever changing, tied to the whims of fate and will.

Maybe the line just gives us an illusion of control. Maybe it’s a frenemy, something that keeps us company whether we’re above or below.

This I know. I’m scared and tired while I stare down my new mountain. I’ve lost cherished independence, that may or may not return, requiring John to be on call at all times. We’re two generations removed since the last time I had to fudge the line, and what if my cancer returns? How many more comebacks can I stage?

Last night, I spewed anger with a close girlfriend, bristling that my impossibles never quell, despite being a good person. At that moment, something awoke in me. I was surprised to feel that old spark in my belly – which has me thinking that anger is serving me well right now.

It was so powerful when Heather commented, “I wouldn’t bet against you.”

I’ve learned that the best way to predict the future is by looking at the past. By that yardstick, I’ve always toed the line, come hell or high water. But like every other climb, I’ll decide what’s good enough, in my time, in my space.

Maybe I can live with that. 

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome and 19 comorbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

I’m Already Well Aware

By Mia Maysack, PNN Columnist

If I did not cling to my optimism for dear life, I'd scoff at the concept of an awareness month such as June being nationally recognized as Migraine & Headache Awareness Month.

That’s due to the fact I am someone who has lived with a daily reminder of intractable pain for over two decades. It isn’t those of us who can directly relate to the pain experience that are in need of awareness.

I feel many “awareness” efforts are limited or fall short in terms of gaining recognition for a specific cause or reason. People typically don’t concern themselves with issues that don’t directly affect or impact them.

Someone who hasn’t ever had a migraine couldn’t possibly understand how it differs from a regular stress headache. Furthermore, somebody who does experience an occasional migraine still cannot fathom what it would be like to have one on a more constant basis.

What transpires within and throughout our individual lenses of the world is real to us and valid, though different from others. That doesn’t lessen the next person’s experience as being anything less than our own.    

There have been some who have thought of my claims about illness are disingenuous. But the reality is that I actually learned to “fake” wellness, in an effort to create a sense of fulfillment and meaning in my life, despite the hand I’ve been dealt.

Others claim those of us who live with pain should be able to “fix” ourselves, once we acknowledge things like a childhood trauma; or that if we adopt “sufficient water intake” and “sleep hygiene” for example, all will be well.

Although I believe there’s some merit to those suggestions, and that they come from a decent, well-meaning place --- if it were that simple, I would be healed by now, along with millions of others who endure similar circumstances.

For a lot of us, we’ve had to come to terms with the fact that there may not be anything out there to give us back the life we once had or wanted. That’s because we’ve already attempted and tried just about everything in search of pain management or relief.

Often, we’re unable to obtain access to options that might ease our suffering because that process can be a grueling one and often has a ripple effect of further complications, along with a multitude of hoop jumping. That’s why I’ve mostly refrained from making it a habit to ask for professional help. Instead, I have worked on acceptance, as there are not many things that anyone else can do for me.   

Relentless and untreatable ailments in any form are going to take a toll, but I hold steady to the concept of “pain” being a worldwide experience that each and every one of us can relate to in some way or another. Each of us have had moments when we’d do just about anything to have the discomfort end.

But instead of embracing the potential for common ground, we as a society tend to label people, when the cure is to be found in seeing and treating one another as fellow human beings. We never truly know where a person may be in regards to their mental health or quality of life, and need not make this already challenging existence any more difficult for ourselves or each other.

Given the extent I’ve witnessed how our healthcare system fails us, I had to choose to not identify with the victim mentality or wait any longer for answers elsewhere.  Ultimately, I stumbled upon empowerment in owning my situation, by tending to myself in ways that I am able. That was my education in self-awareness.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

What If Pain Had a Color?

By Carol Levy, PNN Columnist

What if your pain had a color? Not a color picked to honor an awareness day or month, but an actual color?

I could walk into the doctor's office. “I understand you have pain. Where is it located?” he’d ask. I’d point to the area. It was a bright chartreuse, as blinding as a neon sign.

“Oh yes. You definitely have pain. Let's see what we can do about that,” the doctor would say.

Wouldn’t that be simpler, easier? Unfortunately, it isn’t.

After the trigeminal neuralgia pain started near my eye, I was referred to a neuro-ophthalmologist. Our first meeting did not go well. The level of pain, the resulting disability, and its effect on me made it hard to tell my story in a calm and thoughtful way.

Stopping to collect my emotions, gather my thoughts and make sense of what made no sense, I started and stopped, my words coming in fits and starts. I struggled to control my emotions and not cry.

After a few minutes he stopped me. “Stop being so schizophrenic in how you're telling me your story,” he said. “Your pain is the result of anxiety.”

I didn't understand what he meant. No pain like mine could just be the result of nerves. He wrote a prescription for an anti-anxiety drug, but that only increased my stress, and the anger I felt towards the pain and medical profession.

Undaunted and with hope unfettered, I kept the next appointment. Again, he listened. He still seemed unimpressed with my pain and my story. But his interest was piqued by a birthmark on my forehead directly over the area of the pain. He noticed it would turn a brighter shade of red during various times of the appointment.

I was prissy back then. I hated cursing and embarrassed easily. He was not averse to using profanity, and just one or two words was too much for me. When he cursed, the birthmark would turn bright red. That changing of color and in the way my pain was triggered changed his feeling about my pain. He seemed more interested in it.

“I think it's time we bring you into the hospital,” he told me.

In those days, a doctor at a teaching hospital would be trailed by medical students, interns and residents. Like goslings imprinting on their mother, they followed the doctor everywhere.

When the group came to my room, the doctor wanted them to see how and when the birthmark changed color. He explained to them it was an outward sign of a neurovascular birth defect that he believed was the cause of my pain.

It was a teachable moment and the doctor liked milking it. He knew how easily I was embarrassed and how that would change the coloring of the birthmark. To get it to turn bright red, he jokingly threatened to expose himself (this was in the 1970’s). Immediately it changed color. I was so embarrassed.

It got to the point where all he had to say was, “I'm going to…” And like Pavlov’s dog, the birthmark turned bright red. He did that trick for his lot of ducklings, who were amazed.

My pain still did not have a color, but the changing color of the birthmark showed a visible, anatomic reason for it. It made my pain more real to others. If not for the birthmark and the trick of turning it off and on, the correct treatments might not have been tried.

Cancer patients have lumps or growths. Jaundice turns you yellow. Us? We have nothing but our word. Until pain has a color, our word has to be enough.

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.

Let’s Talk About Chronic Pain and Sex

By Ann Marie Gaudon, PNN Columnist

Do you remember that catchy song from the early 90’s by the hip hop group Salt-N-Pepa called “Let’s Talk About Sex”? I sure do and I still think it’s fun!

For many people, sexual activity and intimacy are incredibly important factors of living well, being happy, and feeling close to one another. But when chronic pain enters a life, those factors may take a big hit. People don’t talk enough – or at all – about living in pain and sexual intimacy.

Let’s talk now baby!

In my many years of being with people in pain, I’ve seen sex become a taboo subject. It can be denied not only to another, but to oneself as well. It gets complicated when the person in pain worries about their physical performance or if they can even engage in sexual activity without increasing their pain.

This most certainly affects self-esteem and confidence in the bedroom. Then we have a situation where everybody stops talking -- when they should be doing just that.

Why does sex matter if you have chronic pain?

It matters and can have a significant impact on your quality of life. Something amazing happens when you are the recipient of wanted sexual touching and intimacy. Your body will release endorphins, which are the body's natural pain reducers. You will feel better and happier, not to mention all those other good feelings you may experience.

The name endorphin comes from “endogenous morphine,” which means they come from inside the body and mimic the effects of morphine. For that reason alone, I tell my clients to have more sex if possible. And if they are single, to get busy masturbating. An orgasm is an orgasm, and your body doesn’t care how it gets there. Just get there.

In 2017 a functional MRI study was conducted measuring brain activity in women during orgasm. “Brain activity gradually increased leading up to orgasm, peaked at orgasm, and then decreased,” researchers found. This activation included many regions of the brain, including those that process rewarding experiences such as food and sex. 

Another study from 2013 shows that orgasm may have the ability to decrease or alleviate headache pain. Want better sleep? Have regular orgasms. Yet another study in 2015 showed the mediating effect of sexual activity on pain and depression for those suffering from low back pain.  

How are you going to have sex if you have back pain?

I found out that the clinical community was in contact regularly with Canadian Dr. Stuart McGill, Chief Scientific Officer for Backfitpro and a distinguished professor emeritus at Waterloo University. McGill is asked repeatedly by clinicians about couples who are celibate because of back pain. Are there any guidelines on sexual technique that can reduce the risk of more pain?

The challenge was on! Professor McGill and graduate student N. Sidorkewicz conducted the only study in the world that took real couples and measured their spine postures and muscle activity while engaged in various sexual positions. This was no small feat, considering the challenges of recruitment, instrumentation and developing an experimental protocol that satisfied the ethics research committee and requests from the medical community. 

The study measured muscle activity and 3D spine and body movements, using the very same technology that was used in the making of Avatar. The object was to create an atlas of sexual positions that did not trigger back pain.

Professor McGill has a short version of a sexual atlas in his book "Back Mechanic," which includes spine-sparing positions that enable sex for people with back problems. The book guides the reader through a self-assessment of their pain triggers. Then, based on the specific trigger, positions and movements are shown to consider and to avoid.

I am super impressed with this work and I only wish that we had guidelines for virtually every source of pain.

Are there other pain conditions that defy sexual activity?

You bet there are! One that comes to mind is pelvic floor dysfunction or PFD. I have known many people with this diagnosis. We all have a pelvic floor, whether you were born with a penis or vagina, and so no one is immune to PFD.

One female patient with this diagnosis -- more specifically “hypertonic pelvic floor muscles” -- told me that just a light touch and/or engorgement from arousal can be enough to create excruciating muscle spasms.

“Spasms beget spasms,” she said. “It is very, very painful and truly sad that we avoid intimacy. I have a Pavlovian response developed over many years of severe pain and flares that lasted for days.”

The forceful, rhythmic contractions that occur for anyone having an orgasm can set off a cascade of painful symptoms. Here are links two simple videos to explain male and female pelvic pain.

PFD is currently treated by specialized physical therapists and yes – there are success stories, thankfully.

How do I get busy?

As a person with any type of pain, you may need to get creative. You may need to adjust positions for yourself or your partner, as well as the time, day and even the environment. If you require minimum body movement, consider self-stimulation while lying beside your partner. Sex toys and lubricants also work wonders, whether you have a partner or are alone.

If being spontaneous is not in the plan, consider making intimate dates either with a partner or yourself. Above all, keep the communication open with your partner. It’s crucial that you understand each other and have realistic expectations without judgment.

If you’re wondering if you can share intimacy without the orgasm, the answer is yes! Orgasm is only one aspect of sexual intimacy, and you can connect and feel great in plenty of other ways.

There comes a time in many couple relationships when sexual intercourse isn’t an option, due to physical, emotional or mental health. When this occurs, there are many alternatives to consider. Make a list for yourself, considering your unique needs, which will support and care for your pained body no matter what stage in life you are in. 

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. 

Studying Natural Opioids Could Lead to New Non-Addictive Analgesics

By Dr. John Streicher, University of Arizona

Opioid drugs such as morphine and fentanyl are like the two-faced Roman god Janus: The kindly face delivers pain relief to millions of sufferers, while the grim face drives an opioid abuse and overdose crisis that claimed nearly 70,000 lives in the U.S. in 2020 alone.

Scientists like me who study pain and opioids have been seeking a way to separate these two seemingly inseparable faces of opioids. Researchers are trying to design drugs that deliver effective pain relief without the risk of side effects, including addiction and overdose.

One possible path to achieving that goal lies in understanding the molecular pathways opioids use to carry out their effects in your body.

What Are Natural Opioids?

The opioid system in your body is a set of neurotransmitters your brain naturally produces that enable communication between neurons and activate protein receptors. These neurotransmitters include small protein-like molecules like enkephalins and endorphins. These molecules regulate a tremendous number of functions in your body, including pain, pleasure, memory, the movements of your digestive system, and more.

Opioid neurotransmitters activate receptors that are located in a lot of places in your body, including pain centers in your spinal cord and brain, reward and pleasure centers in your brain, and throughout the neurons in your gut. Normally, opioid neurotransmitters are released in only small quantities in these exact locations, so your body can use this system in a balanced way to regulate itself.

The problem comes when you take an opioid drug like morphine or fentanyl, especially at high doses, for a long time. These drugs travel through the bloodstream and can activate every opioid receptor in your body. You’ll get pain relief through the pain centers in your spinal cord and brain. But you’ll also get a euphoric high when those drugs hit your brain’s reward and pleasure centers, and that could lead to addiction with repeated use. When the drug hits your gut, you may develop constipation, along with other common opioid side effects.

Targeting Opioid Signals

How can scientists design opioid drugs that won’t cause side effects?

One approach my research team and I take is to understand how cells respond when they receive a message from an opioid neurotransmitter. Neuroscientists call this process opioid receptor signal transduction. Just as neurotransmitters are a communication network within your brain, each neuron also has a communication network that connects receptors to proteins within the neuron.

When these connections are made, they trigger specific effects like pain relief. So, after a natural opioid neurotransmitter or a synthetic opioid drug activates an opioid receptor, it activates proteins within the cell that carry out the effects of the neurotransmitter or the drug.

Opioid signal transduction is complex, and scientists are just starting to figure out how it works. However, one thing is clear: Not every protein involved in this process does the same thing. Some are more important for pain relief, while some are more important for side effects like respiratory depression or the decrease in breathing rate that makes overdoses fatal.

So what if we target the “good” signals like pain relief and avoid the “bad” signals that lead to addiction and death? Researchers are tackling this idea in different ways. In fact, in 2020, the U.S. Food and Drug Administration approved the first opioid drug based on this idea, oliceridine, as a painkiller with fewer respiratory side effects.

However, relying on just one drug has downsides. That drug might not work well for all people or for all types of pain. It could also have other side effects that show up only later on. Plenty of options are needed to treat all patients in need.

Inhibiting a Protein Relieves Pain

My research team is targeting a protein called Heat shock protein 90, or Hsp90, which has many functions inside each cell. Hsp90 has been a hot target in the cancer field for years, with researchers developing Hsp90 inhibitors as a treatment for many cancer types.

We’ve found that Hsp90 is also really important in regulating opioid signal transduction. Blocking Hsp90 in the brain blocked opioid pain relief. However, blocking Hsp90 in the spinal cord increased opioid pain relief. Our recently published work uncovered more details on exactly how inhibiting Hsp90 leads to increased pain relief in the spinal cord.

Our work shows that manipulating opioid signaling through Hsp90 offers a path forward to improve opioid drugs. Taking an Hsp90 inhibitor that targets the spinal cord along with an opioid drug could improve the pain relief the opioid provides while decreasing its side effects. With improved pain relief, you can take fewer opioids and reduce your risk of addiction. We are currently developing a new generation of Hsp90 inhibitors that could help realize this goal.

There may be many paths to developing an improved opioid drug without the burdensome side effects of current drugs like morphine and fentanyl. Separating the kindly and grim faces of the opioid Janus could help provide the pain relief we need without addiction and overdose. 

John Streicher, PhD, is an Associate Professor in the Department of Pharmacology at the University of Arizona. Dr. Streicher has published over 70 peer-reviewed articles and is engaged in numerous drug discovery campaigns to create new analgesics. He receives funding from the National Institutes of Health, the Arizona Biomedical Research Commission, the Flinn Foundation, and the University of Arizona.

This article originally appeared in The Conversation and is republished with permission.