Sacroiliac Joints: An Overlooked Cause of Back Pain

By Victoria Reed, PNN Columnist

I’ve suffered from low back pain for a long time, beginning in my 20’s. I would have terrible spasms, pain, stiffness and leg numbness, which left me unable to walk or function at all.

I went through the usual testing to determine the cause and was asked if I had had some kind of accident or injury. The answer was always no. The only thing I could think of that may have contributed to the back pain was the fact that I ran track throughout my elementary and high school years. I figured all that running might have taken a toll on my spine.

An MRI revealed a bulging disk at the lumbar level. I was offered a nerve block, which helped relieve the pain for a while. But when I had children, the pain returned -- probably because the strain and added weight from pregnancy put extra pressure on my spine. 

A doctor offered a series of epidural spinal injections in which a steroid would be injected to try and shrink the bulging disk. The first shot didn’t work at all, but I was encouraged to try another one. The second didn’t work either. I was then put on pain and nerve medications, which did help somewhat.

Because I was using a prescription opioid, I had to go back periodically for regular exams to see if the meds were helping and still necessary. During one of those routine exams, the doctor asked me to point specifically to where the pain was coming from. I had been doing my own research online and thought the majority of the pain wasn’t coming from the bulging disk, but from my sacroiliac (SI) joints.

The SI joints are made up of the sacrum and the ilium of your pelvis, and are located on the right and left sides of your lower back. They are held in place by strong ligaments. Rheumatoid arthritis (RA) might increase the risk of having trouble with these joints. Though it’s commonly said that RA primarily affects the hands and feet, any joint can be affected.

I mentioned that to my doctor, but he wanted me to have more epidural steroid injections. I refused, partly because they didn’t help before and partly because I’m diabetic, and high-dose steroids cause the blood sugar to go up.

From there, I was sent to physical therapy. The therapy sessions were centered around strengthening my core abdominal muscles, and they did help reduce the number of times my back went out. However, the SI joint pain was still consistently there. During subsequent doctor appointments, and finally after some convincing, the doctor agreed that the SI joints were causing my pain.

SI joint pain is an often-overlooked cause of back pain, and can be confused with disk pain. It’s important to find any and all causes of persistent back pain because the treatments can be different.

Some years later, I agreed to try steroid injections into the SI joints, despite the effect I knew it would have on my blood sugar. Steroids can also make your body resistant to insulin.  I figured it was worth the risk if there was a chance at pain reduction. However, I knew that it would not be something that I could do regularly, and while not 100% helpful, there was some temporary modest relief. 

Since then, I’ve been able to identify what triggers the SI joint pain, and I use several different modalities for relief, including ice, low-dose oral steroids, stretches, and prescription pain medication.

How to Tell the Difference

Pain that is from a bulging or herniated disk can radiate down one leg and cause numbness or tingling. This pain is usually centered in the lower back, whereas pain from the SI joints can be pinpointed to one side or both. Pain from a bad disk can travel all the way down to the feet or toes, while SI joint pain usually stays above the knee.

Leg weakness can be very severe in a disk rupture, even to the point where you are dragging your foot. If you lose bowel or bladder control, that may be a sign of a serious condition called cauda equina syndrome and is considered a medical emergency!

Weakness in a leg from SI joint dysfunction usually isn’t prominent, but you can have numbness and tingling. SI joint pain can be triggered by going from a sitting to a standing position or by sleeping on one side. A trip or a stumble can also set off SI joint pain, and sitting for long periods of time can make either condition worse. Bending or twisting can aggravate a bulging or herniated disk.

While it’s always helpful to pay close attention to your symptoms, imaging is usually necessary. MRI is a valuable tool to get a good look at bulging or herniated disks. I would also keep a pain diary to make a note of what your pain triggers are and where the pain occurs. Make a note also of what relieves the pain (if anything).

All of these things can be helpful with assisting your doctor in making a proper diagnosis. Only until you get the correct diagnosis can you take steps to begin treatment and possibly achieve some lasting relief.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

A Pained Life: Living Unseen

By Carol Levy, PNN Columnist

AARP Magazine recently had an interview with Michael J. Fox, the actor who has Parkinson's disease. Fox spends much of his time working to teach others about the disease.

“I am a motivator and someone who tries to demystify and normalize Parkinson's - to take away any shame or sense that it should be hidden. Because unfortunately, it will inevitably reveal itself,” Fox said.

I read those words and thought, how can the pain community do this? Is there any way we can demystify and reveal what chronic pain is like? My answer is invariably, no.

Pain does not reveal itself easily to others, absent people in pain grimacing, making painful sounds (“Ouch, that hurts!”) or being vocal about their pain (“I can't go, because of my pain.”) Often those behaviors are seen as dramatizing, being lazy or a hypochondriac.

I contrasted this with a recent cooking competition I watched on TV. Prior to entering the studio cooking area, the contestant chef said, “I recently hurt my shoulder.” He added that he hoped the pain would not affect his performance. And it didn't.  He won.  

Afterwards the contestant said, “I didn't notice the pain in my shoulder until after the round was concluded, although the pain was there the entire time.”

No host or judge was there to comment, but I wondered. When he said he had pain, it was just accepted. There was no one in the wings asking, “How can it be you had the pain but could still function in the kitchen?” or “If your pain is so bad, how were able to get past it?”

Or, had he lost the contest, someone might have asked, “Did you intend to use your shoulder pain as an excuse if you lost?”

I come back to this issue -- the invisibility of our pain -- because other disorders like Parkinson’s have visibility. You can see how they impact the lives of Michael J. Fox and others.  

I wrote in a recent column about my experience of being “mask shamed” for not wearing a mask at a hospital. The week after that incident, I was mask shamed again by a conductor on a train into Philadelphia for refusing to mask.

While masks are mandated on public transportation, there are exemptions for certain groups of disabled. Because I have trigeminal neuralgia, I fall into one of those groups.  I bring this up because, when I talked with a manager, I found myself in a small debate with him.

“Had I had an oxygen tank with me, there would have been no issue. The conductor would not have done what she did,” I said.

The manager responded, “Well that is a very different situation.”

“Why is that? That person can’t wear a mask and I can’t mask either.”

“But you can see the reason for why she can't mask,” he replied.

I found myself having to educate him in the only way we can.

“If I had cancer, diabetes or heart disease, you can see none of those but that doesn’t mean I don’t have them.”

He was quiet for a moment. “Oh yeah, I see your point.”

“I am invisible, understand, simply because people refuse to see me,” wrote Ralph Ellison in the Invisible Man. “When they approach me they see only my surroundings, themselves or figments of their imagination, indeed, everything and anything except me.”  

Ellison was writing about being unseen as a person of color, but the description defines pain sufferers as well. 

Maybe, when we try to explain our invisible illness, we need to point out the obvious, as Akiko Busch did in her book, How to Disappear: “The entire world is shining with things we cannot see.”

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.

Endometriosis: My Long Road to Diagnosis and Treatment

By Victoria Reed, PNN Columnist 

My first experience with chronic pain occurred early in life. As a teen, I often had unexplained bouts of pelvic pain and very severe menstrual pain, which left me vomiting and incapable of functioning for at least a full day every month.  

Although Advil (ibuprofen) is a common treatment for menstrual pain, I didn’t discover its use for menstrual cramps until I was over the age of 20. Before then, I tried other over-the-counter pain relievers, but they were all ineffective at controlling the pain.  

In between the painful periods, a dull pelvic ache settled in. It was always there, and after a while it just seemed like a normal part of life for me. But one day I came to the realization that it wasn’t normal to have near constant pelvic pain and decided to seek the help of a doctor.  

I first consulted with a doctor who was in my HMO medical plan. He decided to perform a diagnostic laparoscopy. That’s a surgical procedure in which a scope is used to view the abdominal and pelvic organs. I was told that nothing abnormal was seen.  

Not convinced that everything was normal, I sought the help of another doctor about a year later. The new doctor performed another laparoscopy and found evidence of endometriosis. However, he ended the procedure without doing anything to fix it. At the time, I didn’t really know what endometriosis was and the doctor said that the treatment for it was outside of his skill set. I knew I had to keep looking for a doctor that could actually help. 

After some time passed, I saw a third doctor who did weekly ultrasound “treatments” on my pelvis. I’m not exactly sure how that was supposed to work for pain relief, because it didn’t improve anything. I thought it was a little strange, but was willing to try anything. That doctor would later be convicted of gross sexual imposition for his inappropriate conduct with female patients.  

By the time I was in my mid 20’s, I once again decided to seek help for the unrelenting menstrual and pelvic pain. The fourth (and final) doctor I chose was a reproductive endocrinologist and OB/GYN. Little did I know, I hit the jackpot with this one! Not only was he kind and compassionate, but he was skilled at restoring fertility. At the time, I was convinced that I was going to be unable to have babies, as I had read that endometriosis could cause infertility.  

After our initial consult, the doctor came up with a plan to give the pelvic organs a “rest” by inducing a menopause-like condition with a hormone treatment called Lupron. Lupron has been used to treat endometriosis since 1990 and was found to reduce pain in the pelvis and abdomen. It works by suppressing the amount of estrogen in the body and essentially stops the menstrual periods.  

I had two Lupron injections over a period of six months and felt great! However, I wasn’t allowed to stay on the medication indefinitely due to potentially damaging side effects.  

Unfortunately, after some time off the medication, my symptoms gradually returned. In another year or two, I went ahead with another 6-month course of Lupron. Again, during the time I was on it, I felt no pain. It is believed that the endometrial lesions respond directly to circulating estrogen, so pain intensity can fluctuate with the changes throughout the menstrual cycle. The lesions can land anywhere inside the body, including the colon, bladder, lungs or other internal organs and can cause pain that’s not confined to just the pelvic area.  

After my second course of Lupron, I was told that if the symptoms returned, I could consider yet another laparoscopy. As expected, the pain returned again and I consented to a third surgery. However, this laparoscopy would be different. My doctor performed a lysis of adhesions -- a procedure that destroys the misplaced endometrial tissue that cause pain.

He was also able to free up pelvic adhesions and use a procedure to unblock a fallopian tube, thereby restoring my fertility. This surgery was life-changing. Finally!  

The chronic pelvic pain improved, and I went on to have four pregnancies and three successful births. Unfortunately, the menstrual periods continued to be quite painful.  

It’s been a long road, but I was lucky and feel very grateful to find a doctor who was willing and capable of doing what was necessary to help relieve my pain. I recommend that anyone with a diagnosis of endometriosis seek out a reproductive endocrinologist for the best possible treatment. I also advise anyone with this diagnosis to never give up. There is help and hope!

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

Lobbying for Better Access to Migraine Care

By Mia Maysack, PNN Columnist

Last week the Alliance for Headache Disorders Advocacy held its 15th annual Headache on the Hill, with over 200 patients and advocates from 48 states visiting close to 300 congressional offices to lobby and raise awareness about migraine and headache disorders. Like last year, most of the participants attended virtually online due to the pandemic. 

As a person living with never-ending head pain from a traumatic brain injury for over two decades, it has been an honor to participate in this event for multiple years. During that time, we've continued to make progress, such as more funding for migraine research, expanding options for symptom management, obtaining access to oxygen therapy, and helping to launch the VA’s Headache Centers of Excellence — which are all meaningful strides towards healthcare reform.

However, I have never been prouder to be a part of this year’s Headache on the Hill (HOH), which had two major “Asks” for our congressional representatives:

Ask #1

Support investment in Headache Centers of Excellence for Indigenous Communities, with $5 million per year in additional appropriations. The goal is to have the Health & Human Services Secretary designate 6 new headache centers in mostly rural reservations, with an emphasis on expanding options for telehealth, so that Native Americans and Alaskan Natives living in isolated areas will be able to connect with and consult with medical professionals online.

Ask #2

Have the General Accountability Office (GAO) issue a report on funding priorities for the National Institutes of Health (NIH), specifically as it relates to headache disorders. Although migraine impacts roughly 40 million Americans and is the main cause of disability for women under 50, migraine research still receives some of the least funding from NIH, even though it has a strategic plan to consider the "burden of individual diseases” when making funding decisions.   

There is a pressing need for more migraine research if we are to find new treatments, invest in viable solutions and alleviate the need for more providers who specialize in treating head pain. Headache and migraine disorders need to be prioritized at NIH -- not above or before any other health condition, but alongside them. 

Government accountability is a part of public service. We need to know in what ways are we moving forward and how our money is being spent.   

Navigating the healthcare system can be challenging. I cannot begin to keep track of the countless hours I've devoted to sitting in waiting rooms at clinics, fighting for insurance coverage, begging for referrals, convincing providers that my ailments are real, and attempting many treatments in desperation for relief.

But as horrendous as my experiences have been at times, nothing compares to the malpractice and neglect that is experienced by patients in marginalized communities. 

It has been documented that Native Americans and Alaskan Natives have the highest rates of disabling headache disorders. They are 40% higher than other races, with a particularly high impact on men. Despite this, Indigenous communities on average have only one neurologist for every 125,000 people!   

Health resources that are caring, regardless of cause or condition, are investments in people. We have huge disparities in equitable care. Why is it that communities with the biggest needs have the fewest resources?

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia 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. 

I Was Mask Shamed for Having Invisible Illness

By Carol Levy, PNN Columnist

For years I have worn shirts on which I write my political position. I love wearing them. And I wear them proudly. But since the onset of covid and masking, I have worn a different shirt that reads:

“Can’t mask due to medical issue. Trigeminal neuralgia. I have a doctor's note. I am fully vaccinated and boosted.”

This shirt I do not wear proudly. My medical situation is no one's business but my own. But to keep people from yelling at me, I wear the shirt. And it works. People are usually nice about it.

That was not the case when I went to my local hospital for a blood test. Since covid, if I needed to go to the hospital, I called first to tell them, “I can't mask due to a medical issue. Will this be a problem?”

I was told I had to get permission from administrators, but ultimately got the go-ahead to come in.  I’ve been to the hospital a few more times for tests. Each time they let me in with no or little fuss, so when I had to go the last time, I did not call first.

The welcome desk receptionist signed me in, no issue. The registrar signed me in, no issue. I sat for about 20 minutes, noticed by employees and ignored by them, while waiting for my name to be called.

Then a woman dressed in medical scrubs came over to me with a mask in her hand. She did not take me aside. She confronted me right in front of other patients: “You have to wear a mask or leave.”

“No, I can't wear a mask for medical reasons,” I told her. “In fact, I have been in here two or three times with no problem.”

She reiterated: “You have to put on a mask.”

“No, I can't mask. I have a facial pain disorder and can't wear a mask. That why I wear this shirt,” I said, pointing to my shirt.

Another woman joined the fray: “You have to leave if you won’t mask.”

I was getting angry. “I have trigeminal neuralgia. Do you know what that is? Are you nurses?” I asked. “If not, go look it up. I can't wear a mask. And I have come here a few times since covid with no problem about my not being able to mask. Do you think I like wearing this shirt?  You shouldn’t be talking to me like this in a public setting.”

The two women walked away, only to call me back a few minutes later, into a room that was still within earshot and view of other patients. A man in lab clothes had joined them. The woman in purple scrubs (I found out later neither she nor the other woman were nurses or medical people) held out a plastic shield, “You can wear this.”  

I felt defeated, but no one was going to force me to set off the pain by wearing a shield. “No, I told you. I can't have anything on my face.” 

She pushed the plastic shield towards me. “You have to wear one of these then.”

I was trying to remain calm. “Do you know what trigeminal neuralgia is? There is a reason they call it the worst pain known to man and the suicide disease.”  

She continued to insist, “You have to mask.” Then the man spoke up.  "I'm the lab tech.  I won't let you in the lab or take your blood unless you mask.”   

Finally, for some unbeknownst reason, they capitulated. Immediately after registration I was told to walk to the lab. The technician who stated unequivocally that he wouldn't let me into the lab or take my blood did both. 

It was a horrid experience, humiliating because it was done publicly. Mortifying in that I had to defend having pain from an invisible illness. Despicable in that I was forced to fight to stop them from demanding I make the pain worse. Just one more unanticipated horror of being a chronic pain patient.  

Had I said, “I can't mask. I have a lung issue,” and they saw an oxygen tank, chances are good I would have been left alone or quickly taken care of. 

But I said I had something they couldn't see and had never heard of. To them it seemed bizarre. “You can’t touch your face without pain?” That must be made up. 

In the world of covid, how much extra do we have to endure?   I ask myself, often, will there ever be a time, covid or not, when I won't have to explain myself?

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.

Revised CDC Opioid Guideline a ‘Band Aid for a Stab Wound’

By Emily Ullrich, Guest Columnist

After years of state sanctioned torture, people in pain have finally received a small reprieve from the Centers for Disease Control and Prevention, in the form of a revised draft of the agency’s opioid prescribing guideline.

In the new draft, the CDC acknowledges some of the harm inflicted by its 2016 guideline, by adding language that gives doctors more flexibility in prescribing opioids and encourages them to practice “individualized patient centered care.”

While this perspective is a welcome departure from the original guideline, we need to go further. As a disabled chronically ill patient, I have personally experienced the stigma and misinformation that comes with being prescribed opioids. As a patient advocate, I’ve also watched in horror as an untold number of suffering patients deprived of opioids committed suicide.

There are four main issues that still need to be addressed by the CDC. The first is that many patients on long-term opioid therapy have rare diseases such as Complex Regional Pain Syndrome (CRPS) and Ehlers-Danlos syndrome. Because these and other incurable illnesses aren’t even mentioned in the guideline, it is assumed that most pain patients have treatable conditions such as low back pain or acute injuries that will improve with time. This is not the case. There is a large segment of the patient population that cannot be cured. For them, symptom management with opioid medication is their only option.

Second, it’s important to emphasize that all patients are different. Individual factors like genetics, metabolism, tolerance and more can determine how opioids affect a patient.  A dose that may be “a lot” for one patient might be very ineffective and too low a dose for others.

Third, because of the harms that have been imposed upon pain patients, it is extremely important that providers be advised to treat them with compassion and respect.  Stigma, shame and puritanical morals-based thinking that paints people with pain as having “character flaws” only inflicts more harm and makes it more difficult for them to get help.

Finally, although the CDC has abandoned its previous recommendation that daily opioid doses not exceed 90 morphine milligram equivalents (MME), I can't help but notice new language in the guideline draft that cautions doctors about exceeding 50 MME, a dose that is low for many patients. I fear that 50 MME will be taken above all the other verbiage of the 2022 guideline and be enforced as the new hard limit.

The revised guideline is a small step in the right direction, but patients need more than a band aid for a stab wound.

Emily Ullrich lives with CRPS, Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis, Interstitial Cystitis, migraine, fibromyalgia, osteoarthritis and chronic pancreatitis.

A Painful Shift in News Coverage

By Roger Chriss, PNN Columnist

Chronic pain has not gone away. But media coverage of it has dropped off. Not only are there fewer news stories about chronic pain, but the focus has shifted. Most stories about opioids these days deal with lawsuits and overdoses, not how they are helpful in treating pain.

U.S. media coverage and public interest in chronic appears to be trending downward. According to Google Trends, the number of web searches using the term “chronic pain” peaked in 2018 and have dropped to levels of a decade ago.

Google searches for “opioids” also peaked in 2018 and are now trending downward.

Searches for “medical cannabis” are likewise trending downward. The focus of news coverage is also changing. Stories today about medical cannabis tend to look at legislation and business, not whether cannabis is useful for medical conditions.

Even the opioid crisis turns out not be so interesting anymore. Google Trends shows searches for “opioid crisis” peaking in 2017 and a steep decline ever since.

There is, fortunately, some ongoing interest in pain management. Google Trends shows only a slight decline in searches for “pain management” in recent years.

Americans are losing interest in not only opioids and pain, but also addiction and public health. In 2018, according to Pew Research, 42% of U.S. adults said drug addiction was a major problem in their community. By October 2021, only 35% said that.  

It would be easy to attribute this to the pandemic. But Americans are losing interest in that, too. Surveys taken as the Omicron variant crested early this year across the U.S. showed that more Americans now believe we should “learn to live” with the pandemic and “get back to normal,” rather than treat it as an ongoing public health emergency.  

“The findings come at a possible turning point in the pandemic, as several Democratic governors announced intentions to ease some mask mandates over the next month. The growing frustration with pandemic restrictions may help explain some of those early announcements — even as cases reach record levels,” Press News Agency reported. 

But the prevalence of chronic painful disorders has not changed. In fact, the problem is getting worse because long Covid is fast becoming a new painful long-term illness for millions of people  And the pain of cancer, trauma and life-limiting chronic illness remains the same. But there is, sadly, less and less interest in the subject. 

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. 

Patients Shouldn't Have to Choose Between Opioids and Mental Health Drugs

By Victoria Reed, PNN Columnist

I belong to several online chronic pain support groups. One thing I often notice is that many people say that they’ve been forced to choose between their psychiatric meds and their pain relievers.

Depression is a serious condition that affects many people in the pain community and is often accompanied by anxiety and insomnia. Anxiety is often treated with a class of medication known as benzodiazepines. It is primarily “benzos” that patients are being told to give up in order to continue receiving opioids.

The reason for this is that opioids and benzos depress the central nervous system and raise the risk of respiratory depression – which is slow and ineffective breathing. Mild cases can result in tiredness, daytime sleepiness and shortness of breath. More serious cases can lead to seizures, headaches and even death.

In 2016, the CDC told doctors to “avoid prescribing opioid pain medication and benzodiazepines concurrently whenever possible” and the FDA updated drug labels to warn about the “serious risks” of taking the medications concurrently.

This issue hits home for me because a close relative of mine is on psychiatric medication and also suffers from chronic pain. Currently, she only uses over-the-counter meds for the pain of fibromyalgia, but there may come a time when she might need a stronger opioid pain reliever, as fibromyalgia is progressive and tends to worsen over time.

Will she be able to get a prescription pain medication without having to give up her psychiatric meds? Doctors are already reluctant to prescribe opioids, especially if a patient is being treated with a benzodiazepine or another psychiatric drug, such as those used to treat ADHD.

As mental health conditions worsen due to the stress of the pandemic, many are going to need to stay on their medications. Doctors forcing people to choose between their pain meds and psychiatric meds is only going to worsen the problem of illicit drug use. Sadly, the number of suicides will increase as well.

Being in a situation of having to choose one med over another when you need both, is obviously never good. I hope that my relative never finds herself in this situation.

Many pain sufferers have taken opioids and benzos safely and responsibly for years. They should not be forced to choose between the two drugs, as long they are medically necessary and appropriate.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

Does Opioid Medication Make You Euphoric?

By Carol Levy, PNN Columnist

“Dose escalation, dose reduction or discontinuation of long term opioid analgesics, have potential to harm or put patients at risk if not made in a thoughtful, deliberative, collaborative, and measured manner.

Clinicians have a responsibility to provide or arrange for coordinated management of patient's pain and opioid-related problems, and they should never abandon patients.”

That was written in a tapering guideline put out by the U.S. Department of Health & Human Services (HHS) in 2019. In some respects, it was an attempt to undo some of the damage caused by the release of the CDC opioid guideline three years earlier, which led to many patients being rapidly tapered and/or abandoned by their doctors.

Out of curiosity, I went back to the CDC guideline. A Google search took me to a 2016 New England Journal of Medicine article, co-authored by then-CDC Director Thomas Frieden, who explained the rationale for the guideline this way:

“Whereas the benefits of opioids for chronic pain remain uncertain, the risks of addiction and overdose are clear…. nearly all the products on the market… are no less addictive than heroin.”

How can patients fight against this kind of propaganda? The purpose seems clear: opioid medication and heroin are basically the same. And when chronic pain patients take them, they get addicted. Not only that, we are told, they enjoy it!

“Heroin and prescription opioid pain relievers both belong to the opioid class of drugs, and their euphoric effects are produced by their binding with mu opioid receptors in the brain,” reads information from the National Institute on Drug Abuse.

In other words, we enjoy our opioids because they make us feel “euphoric.”

I could not find any articles or research that asked people in chronic pain, “Do you feel euphoric when you take opioids? Do you enjoy the opioids you are on? Would you take them if you didn't have chronic pain?”  

No one in the online chronic pain group I administer or the others to which I belong has ever said or written, “Dilaudid makes me feel wonderful, it makes me feel high. I love it.”

But they have said or written, “Demerol makes me feel cloudy-headed and my mouth feels like cotton. But I can do more with my life now that I am on it.”

I cannot find research that asked us if our doctors have made us partners with them when tapering or ending our opioid prescriptions. Where are the papers that use us as the experts about the side effects we have when the reduction or withdrawal of opioids is forced on us?

HHS is right. It has to be a collaborative effort when doctors reduce or end opioid prescriptions. But it seems that most doctors are too afraid or unable to act as partners, instead seeing themselves as the ultimate authority.

Changes in opioid prescribing policy should have input from all of us: researchers, policy makers, doctors and patients. It should be thoughtful, deliberative and collaborative -- just as tapering should be a collaboration between our docs and 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.

Saving My Soul From a Real-Life Dopesick

By Cynthia Toussaint, PNN Columnist

While watching Dopesick, the Hulu series that dramatizes Purdue Pharma’s driving of the opioid crisis through their cash-cow OxyContin, I was traumatized to the point of hitting the pause button at least half a dozen times.

The filmmakers were so spot-on with their story telling, I anticipated and said names and organizations out loud before the actors did. You see, I was in the middle of this evil. And I was asked to be a part of the killings for money.

Watching Dopesick reminded me of those god-awful times. Recounting the untold number of people who got addicted to OxyContin and overdosed made me sick. Knowing Purdue and its accomplices nearly got away with it made me sick. How close I was to it all turned my stomach.

In 2003, about a year after I founded For Grace, I was deep in the planning of a California Senate hearing that would shed light on gender care bias toward women with high-impact pain. I loved every crazy-busy moment of this endeavor to give voice to women dismissed by the words, “It’s all in your head.” I was ecstatic to have three female state senators co-sponsoring my hearing that, to this day, remains the most requested event video in Capitol history.     

Out of the blue, Purdue Pharma’s Director of Community Outreach phoned. I’d never heard of Purdue before, but upon overhearing the call, my partner John handed me a note, telling me they were a pharmaceutical company that funded nonprofit pain organizations.

I was flattered that Brenda (not her real name) loved the work I was doing with the hearing, but more than a bit miffed when she recommended her own advocacy people be able to testify. As a start-up nonprofit, For Grace sure as hell needed underwriting, so I agreed to call and get to know her folk. What could it hurt?

I was pleasantly surprised when they were friendly and knowledgeable and, in the end, I chose to go with half my people and half Brenda’s that I and the senators’ staff vetted.

Things went sideways the morning of the hearing when Purdue and those who would testify met with us at the Capitol. After brief intros, Brenda asked for my written testimony and quickly edited it in red pen. I was infuriated by this unwelcomed intrusion.

Still fuming, I arrived late to my own senate hearing as I’d been yelling at John that they had no right to change my testimony just because they’d paid to fly some people in. Who the hell do these creeps think they are?                  

After the successful, standing room only hearing, I was beyond stoked and let the bad energy of the morning pass over dinner with legislators and staffers I adored.

Also in attendance were Purdue and their speakers. That night, at Purdue’s suggestion, we began laying the groundwork for a “Women In Pain” coalition. I was in heaven with the prospects of giving my movement a bigger platform.   

cynthia toussaint (right) testifying at 2004 hearing

Women In Pain (WIP for short) was For Grace’s exciting new project and the cause I wanted most to lead. Springing from a 2001 medical study entitled “The Girl Who Cried Pain” and a follow-up article in The New York Times on the neglect women face in getting their pain treated, I couldn’t wait for the world to learn about WIP. To have a coalition of nonprofit pain leaders and a deep funder behind our movement was a dream.

A dream that would slowly erode into the ugliest kind of nightmare.

When the coalition and Purdue began meeting, the first order of business was to establish an understanding that everyone would be working under For Grace’s umbrella, as we initiated the WIP concept and felt a deep ownership. In fact, we were strongly considering expanding our mission from CRPS awareness to the plight of all women in pain.

Though I’m known for my work ethic, I soon felt overwhelmed by my load. To keep up with For Grace’s everyday activities and the coalition’s needs, John and I were grinding through long hours, seven days a week.

Almost out of the gates, we were getting pushback from coalition members about seemingly everything. Jealousies erupted as I was getting the lion’s share of media attention due to my hustle and drive. Per their demands, I generated media coverage for all members, but that wasn’t enough. Some of them wanted me to script out their answers for interviews. I was beginning to feel beaten.  

‘The Correct Response’

One day I received a call from Purdue inviting me to give the keynote address for pain advocacy conferences they were underwriting in Denver and Philadelphia. The purpose of these events – or so I was told – was to train and inspire pain leaders to effectively interface with media and policy makers.

The person who’d be overlooking this affair was Dr. Richard Sackler, the grand dragon of the family-owned Purdue empire. At the event, Purdue minions were twisted like pretzels in their desire to please this unimpressive man, who struck me as distant and cold.

I was insulted when Purdue insisted that I take a media training class. In a taped, mock interview with their crisis management consultant, I was asked, “What treatment do you advise when a person gets a CRPS diagnosis?”

“Well, there’s a whole range of options out there, including alternative ones,” I answered, spreading my hands a yard wide. “Remember, what works for one person may not work for the next.”

Purdue’s consultant chided me. “As the up-and-coming pain star, you should rethink your answer. The correct response is to take OxyContin,” she said.

Stunned, I responded, “But that would kill people. There’s nothing to rethink.” I felt trapped in a queasy Twilight Zone episode, as not a soul in the crowded room of pain advocacy leaders and healthcare professionals backed me up.

That night, ensconced in our five-star hotel room, it dawned on John and me that everyone in this scheme was training to be a de facto sales force for OxyContin. We were the only schmucks not in on it, though Purdue was actively grooming me to be their #1 patient sales person.           

This bizarre, shady gathering left me with a rancid taste and my enthusiasm curbed for the coalition. But I forged on, at the behest of my advisors, to give Purdue a fair chance to find common ground, a notion I now laugh at.

Next, Purdue offered me an extraordinary opportunity to make WIP fly in an influential, national arena. I was invited to bring our project to “Women In Government”, a powerful organization comprised of female state legislators throughout the country. Thrilled, I introduced my cause at their western regional meeting in Honolulu, then prepared to close the deal at their annual conference in Tucson.

I must admit, I was enjoying Purdue’s lavish courtship – travel, the chauffeur-driven town cars, the choicest suites and the finest meals. After all, I’d earned these perks, I told myself. I was working damn hard and was extremely effective with my message. I knew I was good at what I was doing and it was gratifying to be recognized.

But Purdue continued their insidious attempts to control me. Before my speech, Brenda chided that I’d better knock it out of the park as they were spending a small mint. Further, I was not to go one nanosecond over my 20 minute speaking limit, or else! Hmmm, not the good luck pat on the back I’d hoped for.

Fuming, I made a beeline for the event coordinator, telling her of Brenda’s abuse. Her face turned beet red, angrily telling me that Purdue didn’t run their show. This kind woman reassured me to take a deep breath, then go out and do my thing. So I did.

During my standing ovation, the director came over and hugged me with eyes welling. Joy confided with the room her ongoing bout with chronic pain, along with her ringing endorsement of the WIP movement. Then I was circled by legislators, shaking my hand and thanking me. Most important, they said they’d do whatever I asked.

Later that day, Brenda showed me first-hand what my advocacy future would look like if I played nice with Purdue. During a special session, I watched a Broadway-level singer/actor/cancer survivor entertain the audience, giving them an update about her cause to promote a cervical vaccine. She was living my advocacy dream job – traveling the world, performing, making great money, all the while helping people. That afternoon, she captivated the room.

I had stars in my eyes. For the first time since losing my performance career at 21 due to CRPS, I was being offered a job that would completely feed me. And it was a more noble pursuit than entertaining, as I’d be helping, even saving, many people. But could I get Purdue to come around? They wouldn’t want my services solely to peddle OxyContin, right?

There’s much bigger fish to fry with our shared mission (or so I thought) to put chronic pain and gender care bias on the map. This was my great passion, and I was determined more than ever to thread that needle.

Purdue Wants More

But my naïve hope didn’t float for long. When we restarted our coalition meetings, the women were stone cold toward me, and I felt punished. Their jealousies were amping, and managing all the egos and expectations added to my overload.  I began feeling itchy that the coalition was grinding me to dust in an attempt to heist the project, leaving For Grace behind. The walls were closing in.

I called Brenda and voiced my concern. Oddly, she was warm and reassuring, voicing that, per our agreement, the project would never be taken away from For Grace. To the contrary, she said we were approaching a tipping point where the WIP movement would explode.

I was calm, for about a minute.

On the next call, the gates of hell broke open. The women were backing unethical suggestions from Purdue, including supplying a prominent link from our WIP website to Purdue’s OxyContin marketing page.

John went nuts, sternly stating that was a “slippery slope.” He exploded, “If we give them that link for their money, they’ll want more. And more!"

The women yelled him down, saying For Grace didn’t know how business worked. The back and forth warring finally ended when I pronounced, knowing full well Purdue was on the call, “I won’t be a whore for a pharmaceutical company.” The sounds of phones hanging up followed.

Soon after, I saw in a coalition member’s nonprofit newsletter that she and the others were launching a new organization. It was called “Women With Pain” and parroted our mission. Around that same time, I was abruptly dropped from planned media stories and speaking engagements. Clearly, Purdue’s tentacles ran far and wide. When I threatened to speak to the media about their dirty deeds, Purdue called with a bevy of their attorneys in tow, telling us thuggishly to put a cork in it.

I cried, I yelled, I screamed, I even begged God for mercy. What I’d given birth to had been heisted, and was going to be used to kill people. John and I got deeply ill with what I thought was an epic flu, but looking back, I see it was despair. I became despondent and we were convinced there was no path forward with the good work. Worse, I started thinking deeply about ending my life. I didn’t want to live in a world this soulless.

Saving My Soul

But the fire within hadn’t burned out, and after ample time to grieve, I was able to get out of bed. I was further lifted by For Grace board members who prodded me to not let the bad guys win. Ultimately, I saw that good things could be possible again.

While formally expanding our mission to Women In Pain, I used my persuasiveness to get the pro-bono services of a top-end intellectual property attorney. He sent every coalition member a cease-and-desist letter, advising them not to use the name and idea inspired by For Grace.

I was elated that the letter hit its mark. In fact, the rival organization’s name and announcement were taken down the very next day. Shortly after, I was informed the new coalition was dead on arrival and I knew I’d gotten Purdue, a multi-billion dollar corporation, to buckle.

That’s how I saved my soul from the Sackler family and their savage empire. And I’ve never looked back. Until now.

Those terrible years of trauma surged back while watching the evil dramatized in Dopesick. I was reminded that everything Purdue touched turned to rot. Worse, with few exceptions, everyone enabled them. Without hesitation, they all lapped up Purdue’s dirty money. To make this level of killing possible, Purdue bought support from a wide range of villains: the FDA, policy makers, healthcare professionals and, yes, pain patient advocates. You know who you are.

For years, I’ve watched bad people with bad organizations take bad money to do bad things. And the opioid crisis that Purdue spearheaded has made collateral damage of all of us with pain. Many who need opioids to functionally survive no longer have access.  Many good doctors who responsibly prescribed have been indicted. And for ethical pain organizations who still want to do good work, funding has dried up. I think it’s fair to emphatically state that everyone with pain is suffering in the wake of Purdue’s and their enablers’ sins.               

With apologies, I don’t have my usual up-beat take-away, no words of comfort. Just tears, and a plea. Watch Dopesick, study it, commit this atrocity to memory. Take my word, the pharmaceutical industry is doing just that, and there’s another Purdue in the making that will attempt to make billions off the suffering and murdering of millions. All in the name of pain care. 

I was this close to being one of Purdue’s statistics. But I lived to tell my story. Perhaps it’s not foolish to hope next time more souls will be saved.

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 nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Constant Pain Can Lead to Diabetes, High Cholesterol and Heart Problems

By Dr. Forest Tennant, PNN Columnist

Intractable Pain Syndrome (IPS) is constant pain with cardiovascular, metabolic and hormonal complications. Constant pain is a severe stressor that causes the adrenal hormones cortisol and adrenalin to rise in the blood as the body attempts to reduce stress.

These hormonal elevations can lead to serious metabolic consequences that need to be well known to persons who have IPS, as well as their family and medical practitioners. High levels of adrenalin cause blood pressure and the pulse rate to rise. When cortisol is elevated, it causes the hormone insulin and blood sugar (glucose) to rise in the blood.

If blood sugar remains too high for too long, a person can develop diabetes or pre-diabetes, which is often called “insulin resistance.” Most persons believe that diabetes is a metabolic disease and is unrelated to hormones. The fact is that insulin, cortisol and adrenaline are hormones.

In addition to diabetes, a person with constant pain is also at high risk of developing or experiencing any or all of the following: 

• Heart Attack

• Heart Pain (Angina)

• Stroke

• Dementia

• Arteriosclerosis

Some persons with IPS have died suddenly and unexpectedly, sometimes while asleep. Often these cases are falsely labelled as a drug overdose.

There are three reasons for sudden, unexpected death in persons with IPS who are undertreated and have cardiovascular, metabolic and hormonal complications.

• Cardiac Arrythmia

• Adrenal Failure          

• Hypoglycemia (Excess Insulin)

Every person with IPS needs to be evaluated for diabetes, pre-diabetes, hypertension, tachycardia and excess cholesterol. Steps must be taken to eliminate or reduce any or all of these IPS complications. Consult your medical practitioner at your earliest opportunity for an evaluation of these complications. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here. The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.     

What’s Missing in ‘Opioids: The Big Picture’

By Roger Chriss, PNN Columnist

Canadian family physicians Mark Dubé and Henry Chapeskie recently created a video called “Opioids: The Big Picture” to give what they describe as a “short history of how we got into trouble with opioids, how even a small number of opioid pills can lead to addiction, and why they should not be used in non-cancer chronic pain.”

Drs. Dubé and Chapeskie spend the first third of their hour-long video on the history of opioids, mostly the 19th century Opium War in China, and the remaining time on modern prescription opioids. They refer to opioids as a “global environmental toxin” which cause “narcotic neurotoxicity.”

They also claim that opioid-induced hyperalgesia is common, that no studies show any benefit to opioids for pain management, and that opioids cause permanent brain damage. They argue that the current opioid crisis is driven by the steadily increasing supply of prescription opioids and should be addressed the way we handle air pollution. They conclude by saying that “opioids are neurotoxic, cause pain, and are toxic to the individual and society.”

None of this holds up well to close scrutiny. The Opium War was about more than a “state-sponsored monopoly with an illicit drug.” In fact, there were two Opium Wars, with the first being about trading rights, open trade and especially diplomatic status, and the second war directed at expanding trade, including opium, between Europe and China.

The notion that opioids are a “global environmental toxin” comparable to air pollution assumes exposure is passive and inevitable. But opioids are not like mercury or asbestos, emitted as a contaminant from industrial processes that could be cleaned up. Their claims about neurotoxicity are also problematic. Although small-scale imaging studies do show changes to some brain structures upon opioid exposure, the significance of this is unclear.

Their emphasis on opioid-induced hyperalgesia (OIH) – the theory that prolonged use of opioids leads to greater pain sensitivity -- is also greatly overstated. A 2021 review of published studies found only 72 patient cases of OIH, all of which were easily diagnosed and managed by opioid rotation, opioid cessation or switching to non-opioid pain medications.

Last and most important, Dubé and Chapeskie claim that “there is no evidence (zero!) to support use of opioids” for chronic non-cancer pain. They cite the 2018 SPACE trial as their major source of evidence, although that study showed opioids were no better or worse than non-opioids for pain relief. More importantly, the SPACE study didn’t find any evidence of abuse, misuse, addiction or overdose among the 108 people on opioids for a whole year, which argues against the very risks that Dubé and Chapeskie describe as inevitable.

Dubé and Chapeskie point to a single study on opioid tapering that showed good outcomes. That 2020 study found only minor improvement in cognitive function after opioid tapering. Multiple other studies show the risks and harms of tapering often outweigh its benefits, especially when tapering is rapid.

Moreover, there are clinical studies showing that opioids are effective and safe when used appropriately. A 2021 German study, for example, found that tapentadol relieves chronic low back pain, and a 2017 review found tapentadol was effective and well-tolerated by patients with moderate to severe pain for up to two years.

The video “Opioids: The Big Picture” could have been a useful introduction to opioid pharmacology, chronic non-cancer pain, and clinical practice. It could have introduced current best practices for opioid initiation and tapering. And if the focus was to be on the public health risks and harms of opioids, then it should have followed the fine work of David Courtwright's book "Dark Paradise”, Sam Quinones's "Dreamland”, or Chris MacGreal's "American Overdose".

It is unfortunate that even in the 2020s we are still struggling to get basic information about opioids right. This is arguably part of why we have a worsening opioid crisis and deteriorating pain management situation.

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.  

Why Patient Advocacy for Rare Diseases Is Important

By Joanna Mechlinski, Guest Columnist

If you’ve been relatively healthy throughout your life, you tend to have a lot of faith in doctors. You believe that when a person gets sick, they simply go see a doctor and soon everything is better.

Movies and television only serve to bolster that impression, as characters frequently show up in hospitals with a baffling array of symptoms, only to have a doctor dedicated to the case quickly diagnose them.

Even if it’s a rare disease or condition which the doctor has never seen outside of a textbook, they will piece it all together successfully -- often continuing to puzzle it out after their work day has ended. The patient then receives medication or therapy from specialists. It’s understood that while recovery might take a while, it’s generally always possible.

Unfortunately, in real life, things often don’t work out this way. You might explain your symptoms to the doctor, who orders blood tests and other diagnostics. When the results come back, they’ll shrug and tell you they simply don’t know what’s the matter. As your symptoms increase, so does your desperation for relief, so you try other doctors and medical facilities, often with the same outcome.

In the U.S. we use the term “rare” to describe a disease that affects fewer than 200,000 individuals (in the EU it’s fewer than 1 in 2,000 people). But the reality is many of these diseases aren’t all that rare. They simply aren’t as common as things like breast cancer or diabetes. The National Institutes of Health’s Genetic and Rare Diseases Information Center says there are approximately 7,000 rare diseases.

In 2005, I was diagnosed with polymyositis, a rare disease that causes muscle inflammation and atrophy. I had never heard of it, nor had any of my family or friends. Go ahead and Google it -- you will quickly see just how little information exists, aside from basic definitions and the occasional patient GoFundMe. Yet per The Myositis Association, there are an estimated 50,000-75,000 people affected by a form of the polymyositis in the U.S.

Following my diagnosis, I made appointments with many specialists, some in world-renowned facilities. They seemed to know little more than I did, and I often found myself explaining various elements of the disease to them.

It would have been easy to simply give up. If much of the world didn’t even know my disease existed, then how could I hope for understanding from family and friends, much less treatment or a cure?

I learned a few lessons quickly about being a patient advocate, which I still follow today:

1. Tell your story: Yes, sometimes it’s hard to reveal personal details. But in this instance, I believe I need to use my life to educate others. What if someone else has a form of myositis, but is still undiagnosed? Both doctors and patients need to keep the condition in mind when viewing certain symptoms. I have written many freelance articles about polymyositis for various publications, and I am now writing a book.

2. Contact lawmakers: Yes, people often grumble politicians don’t do anything for them. But how can they even consider getting help for a problem they don’t know exists? Reach out to lawmakers at the local, state and federal level. Tell them about your disease and how it affects your life. Tell them what you and others with the condition need.

3. Connect with others: Thanks to the Internet, it is now easy to find people sharing an illness, regardless of how rare it is. It’s also easier to keep in touch when in-person visits may be difficult due to pain, fatigue, travel costs, etc. Making friends with people who have similar conditions can be very beneficial, particularly when sharing information about medications and treatments. It can also be a godsend to simply vent and gain support from a person who truly understands what you’re going through.

Under the guidance of the National Organization for Rare Disorders (NORD), the first Rare Disease Advisory Council (RDAC) was created in North Carolina in 2015. The goal was to strengthen the rare disease community’s voice in the state legislature.  

Patients and their families, caregivers and medical providers then banded together in other states. By the end of 2021, NORD reports that legislation creating more RDACs had been signed into law in Florida, Louisiana, Massachusetts, New Jersey, Ohio, South Carolina and Virginia. In all, Project RDAC contacted 254 legislators and introduce 11 RDAC bills.  

Being diagnosed with a rare disease while in my 20’s was not exactly among my childhood dreams for the future, but I’m far from resigned. I recall how diabetes - today usually considered a fairly manageable condition - was a death sentence until well into the 20th century, when insulin was discovered.  

Who’s to say that polymyositis and other rare diseases might not veer onto a similar path at any time? Until then, I will do my best to advocate and educate. 

Joanna Mechlinski is a former journalist who currently works in school transportation. She lives with lupus, polymyositis and fibromyalgia, and is passionate about advocacy. 

Pain News Network invites other readers to share their stories with us. 

Send them to:  editor@PainNewsNetwork.org. 

How to Overcome Suicidal Thoughts and Find Hope

By Ann Marie Gaudon, PNN Columnist

Over the course of our lives, every single one of us will have painful thoughts and emotions in response to adversities and challenges. A sense of hope that we will either cope with or overcome the adversity helps to keep us going.

But when all hope is gone, this can lead to the desire to leave life itself. Hopelessness and helplessness are key factors in the decision to escape a life that is seen as unbearable.

Globally, we lose over 700,000 people to suicide every year. That tells us millions of people are suffering, both mentally and physically, struggling and searching for relief which too often does not come.

Suicide causes heartache and grief for those left behind, affecting families and entire communities. If that weren’t enough, knowing someone who died by suicide is linked to an increased risk for suicide and other mental health challenges.

Suicidologists have developed various theories in an attempt to identify common factors across suicidal experiences. Here are three:

Interpersonal Theory of Suicide

The person no longer feels they belong in a healthy sense, but rather feels like a burden to others. They see their situation as never changing, and therefore hopeless.

Three-Step Theory of Suicide

Step 1: The combination of pain and hopelessness causes suicidal desire.

Step 2: Suicidal desire intensifies when pain exceeds or overwhelms connectedness.

Step 3: Strong suicidal desire progresses to suicide attempts if a capability for suicide is present.

Although this theory differs in certain ways, it similarly advises that psychological or physical pain must be accompanied by hopelessness to cause suicidal desire.

The Integrated Motivational-Volitional Model

This model’s hypothesis is that “entrapment” or feeling there is no escape from the adversity drives the suicidal behaviour. Entrapment refers to a specific sense of being stuck, whereas hopelessness refers to a sense of pessimism. Hope appears to “weaken the relationship between entrapment and suicidal desire.”

The aim of these researchers is to identify the factors which shift suicidal thoughts into suicidal behaviour, in order to reduce or eradicate these factors and save lives. They all posit that hope is necessary even in the face of intolerable pain, whether physical or emotional.

One thing I have learned as a therapist is that people have a choice only if they believe they have a choice. Hope must ring true to a person’s reality.

Seek Social Support

Research shows us that social isolation is associated with increased risk of suicide, while social support is related to a decreased risk. Who in your life’s circle has the headspace to support you, listen to you, and help you when needed? Your spouse, family, friends, neighbours, colleagues, and clergy – can you count on their support?

Sometimes, a person’s only support is their therapist.  Support is a protective factor and necessary as an antidote to social isolation.

Attend to Your Emotions

Trying to avoid or distract yourself from your emotions will only have them rebound back to you and be even more invasive. As emotional pain is one driver of suicidal thoughts, get some help to process what you are feeling.

Can you notice and name what you are feeling? Can you accept what you are feeling without being overwhelmed by it? Do you recognize the message within the emotion? Are you aware of, and capable of self-compassion directed toward your pain?

Quite often I see the need for self-compassion and the need for support from others simultaneously. Once you can let your emotions be just as they are, are you able to shift yourself into soothing your psychological pain? Are you capable of moving into a more valued direction? 

If you have answered “no” to any or all of these questions, a trained therapist can help you.

Broaden Your Perspective

The hopelessness theory of depression tells us that most people who feel hopeless believe their struggles are unique to them (internal) or about them (global struggles), and that these struggles are unchangeable.

Therapeutic work can help to unravel why a person might believe that they themselves are hopeless. Talk and other techniques can reveal where these beliefs began and why. When the origins of erroneous, negative beliefs are understood, they can be replaced with beliefs that are based in reality and not a product of emotional reasoning (e.g. “I feel like I have no worth, therefore it must be true”).

Global struggles can often be tamed with the support of a group. Support groups offer a multitude of protective factors such as encouragement, friendship and guidance. You can be with people who can truly empathize with you and comfort you as an antidote to your own disappointment, frustration and confusion. Peer support can be powerfully protective and also help to dissipate any stigma you may be feeling toward yourself or situation.

Gain a Purpose

The antidote to feeling powerless is to feel empowered. Again, peer support from a support group can contribute to a sense of empowerment and purpose. Reduced isolation, empathy from others, and an increase of information and awareness are all threads in the fabric of assertion, better life choices, and a sense of hope that the situation can be changed. If it can’t, then your perspective about the situation can be improved.

Support groups are effective because they bring together people who all share something in common. This creates a support system. With most gatherings now online, you can find a support group for virtually any issue.

For example, I am a person in pain, so I can find these similarities, support and empowerment from an organization in my country: The Chronic Pain Association of Canada. I also belong to a smaller support group with a very specific ailment in common. One of my diagnoses is interstitial cystitis/painful bladder syndrome, so I also belong to The Happy Pelvis for the same benefits.

The Takeaway Message

No one can make it alone. Life is a collaboration and we often need help and support. There is no shame in this, it is the human condition. Suffering is what unites us -- it does not separate us from the crowd.

Whatever your challenge, you are not alone. Get the help you deserve and surround yourself with supportive allies. When you are feeling more empowered and stronger in general, you can be a part of change. That change may be within yourself or it may be a part of the outside world. Where there is help, there is hope.

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. 

If you are in crisis and live in Canada, help is available by calling the Canada Suicide Prevention Service at 833-456-4566. If you live in the US, help is available by calling the National Suicide Prevention Lifeline at 1-800-273-8255 (TALK). You can also call 911 for immediate help..

The Pros and Cons of Medical Marijuana

By Joanna Mechlinski, Guest Columnist

If you live with chronic pain, chances are someone has mentioned medical marijuana to you. And why shouldn’t they? It’s constantly being discussed in the media.

So far, 36 states have legalized medical marijuana, and many have extended the qualifying illnesses to include some chronic pain conditions. A 2021 Pew Research Center survey found that 91% of American adults approve of the use of cannabis for medicinal purposes. And a recent Gallup poll found that over two-thirds of adults believe marijuana should be legal for both medical and recreational use.

So to the average person, trying to be helpful, it might seem that cannabis is a simple and obvious answer to a pain patient’s prayers. Unfortunately, it doesn’t work that way for everyone.

In 2019, my rheumatologist suggested I try medical marijuana. Considering that I’d been living with chronic pain for over fifteen years, thanks to lupus and polymyositis, and tried all sorts of medications and treatments to no avail, I was understandably excited.

Although I’d had my hopes dashed numerous times already, I still continued to feel a tiny bit of hope whenever a doctor suggested something new. Maybe, just maybe, this would be the thing that would help alleviate my life of never-ending pain and fatigue. If so many other people were turning to medical marijuana, surely it had to be a good thing?

Like many other pain patients, I was tired of the constant battle to prove I “deserved” opioid painkillers. I was also tired of never daring to mention the fact that opioids were the main reason I was still a productive member of society. Many people choose to ignore that fact and focus instead on the potential for addiction.

Unfortunately, it’s not as if you can just walk into a marijuana dispensary and be handed a life-altering concoction. There’s a lot more to it, much of which no one ever seems to mention.

For starters, not every medical professional is legally permitted to certify a patient for cannabis, which is required in many states. You need to find a doctor or APRN (advanced practical registered nurse) who is --- and it’s usually not cheap.

Here in Connecticut, the practitioner I saw charged $175 for new patients and $125 for a renewal. Then, along with your application, you need to send the state $100. This gets you a medical marijuana certificate, good for only one year, if you have a “debilitating medical condition” recognized by the state.

Different states charge different prices and your certificate or license can last longer, depending on where you live. There are also some discounts - again, not everywhere - for veterans and low-income individuals. Still, the various costs can add up quickly, and they are not covered by insurance.

Your first visit is a consultation, at which you and a staff member discuss your condition and symptoms. Unfortunately, it’s not a one-size-fits-all kind of thing. Your body may react differently to a particular marijuana strain or product than another person suffering from similar symptoms.

So, if you’re like me, you may have to try a wide variety of tinctures, oils, vapes and other products. Each will cost, on average, between $50-$100 for a few weeks’ dosage. You can only pay with cash or a debit card.

Over two years, I returned to the dispensary numerous times, hoping the next product might be the one. But at best, there was just a slight improvement. I was wanting so badly for cannabis to work that it might have solely been in my imagination.  

At any rate, I wasn’t willing to keep paying large amounts of money for something that was causing me about 5% improvement at best.  More realistically, it was probably closer to zero.

Does all this mean you shouldn’t give medical marijuana a try? Of course not. If you and your doctor feel it may alleviate your pain and is a good option, you should definitely give it a try. Just keep in mind there are a lot of factors to consider, and patience is definitely key to the process.

Joanna Mechlinski is a former journalist who currently works in school transportation. She lives with lupus, polymyositis and fibromyalgia, and is passionate about advocacy. 

Pain News Network invites other readers to share their stories with us. 

Send them to: editor@PainNewsNetwork.org.