A Pained Life: Our Dirty Words

By Carol Levy, PNN Columnist

You may remember the late comedian George Carlin’s monologue: “Seven Words You Can Never Say on Television." I won’t list them here, but they are “dirty” words better off not being said, even off television.

I thought about Carlin’s list the other day when I realized there were some words that I use all the time. They’re not dirty words, but for many of us who have chronic pain, they’re words that often prove to be hurtful. Words that we need to let go of.

For example, a major portion of my trigeminal neuralgia pain comes from eye usage and eye movement. I love to read and whenever I pick up a book I know it’ll cause pain, but I refuse to let the pain take this from me.

As I read, the pain starts to grow and becomes demanding: “Stop! STOP NOW!”  

But the plot is thickening and the killer will be soon be unmasked (I hope) in the next few paragraphs, so I keep reading. And the pain keeps growing.

The voice in my head yells: “You have to stop. You have to stop NOW!”

The other voice, the one that refuses to accept my limitations, answers: “Just one more page. Just one more paragraph. Just one more sentence.”

I can listen to the sensible voice and stop now. Or I can read just a little more. And be in tremendous pain. Most of the time the “just” voice wins. It is a word that is anathema to controlling the level of pain. But I let it win anyway.

Shoulda Woulda Coulda

“Should” is another word that causes us to do so many things we know we shouldn't: “I should make the bed” or “I should make the kids dinner even though the pain is so bad.”

That’s often followed by the self-flagellating counterpoint “I shouldn't have made the bed or read that book. I knew it would make the pain worse.”

“Could” is another one. I find this word to be a favorite of rueful thoughts in the “coulda woulda shoulda” variety. It is also a favorite of others who ironically think it is a compliment: “You could have been a doctor, lawyer or teacher.”

Yes, that’s a nice thing to say. It is usually an effort to compliment us, our intelligence or intrinsic worth. And it is so hurtful. Yes, I know I could have been those things. I may have even tried, but the chronic pain took those options away.

Pretending or refusing to accept our limitations, and knowing when to say when, is often very hard to do. Because we want so much to do more than what the pain allows us to do.

I am sure there are many other words that describe our plight, but in thinking about it they all seem to come under one umbrella word: Denial.

It is hard to do, but we need to learn to accept what we work so hard to deny. When it comes to deciding what we can and cannot do, the pain is king.

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.”

FTC Sues Drug Makers for Oxymorphone Monopoly

By Pat Anson, PNN Editor

It was in 2017 that Endo Pharmaceuticals – under pressure from the Food and Drug Administration -- stopped selling Opana ER, an extended-release version of the opioid painkiller oxymorphone. Opana had been reformulated by Endo to make it harder to abuse, but the FDA maintained the tablets were still being crushed, liquefied and then injected by illicit drug users.

Although Opana has been off the market for nearly four years, a legal battle still rages over sales of generic oxymorphone and whether Endo conspired with another drug maker to control the market for oxymorphone.

This week the Federal Trade Commission sued Endo, Impax Laboratories, and Impax’s owner, Amneal Pharmaceuticals, alleging that a 2017 agreement between Endo and Impax violated antitrust laws by eliminating competition for oxymorphone ER.

It’s the second time the FTC filed complaints against Endo, Impax and Amneal for allegedly creating an oxymorphone monopoly.

“The agreement between Endo and Impax has eliminated the incentive for competition, which drives affordable prices,” Gail Levine, Deputy Director of the FTC’s Bureau of Competition said in a statement. “By keeping competitors off the market, the agreement lets Impax continue to charge monopoly prices while Endo and Impax split the monopoly profits.”

According to the FTC complaint, Opana ER generated nearly $160 million in revenue for Endo in 2016 and was the company’s “highest-grossing branded pain management drug.” Endo explored bringing another oxymorphone drug on the market to replace its lost revenue, but ultimately decided to partner with Impax, which had the only extended-release oxymorphone drug on the market.. Their agreement allowed Endo to share in Impax’s oxymorphone profits, as long as Endo did not bring another generic tablet on the market.

“The purpose and effect of the 2017 Agreement is to ensure that Endo, the gatekeeper to competition in the oxymorphone ER market, has every incentive to preserve Impax’s monopoly. By doing so, it eliminates any potential for oxymorphone ER competition, allowing Endo and Impax to share in the monopoly profits. As a result, patients have been denied the benefits of competition, forcing them and other purchasers to pay millions of dollars a year more for this medication,” the FTC complaint alleges.

The 2017 agreement between Endo and Impax arose from a breach of contract case relating to a patent settlement between the companies over Impax’s generic version of Opana ER, in which Endo paid Impax more than $112 million not to compete. In 2019, the FTC ruled that settlement was an illegal "pay-to-delay" agreement.  

Both Endo and Amneal deny there was any effort to create a monopoly in their 2017 agreement.

“It is Endo’s position that the Agreement had no adverse impact on actual or potential competition.  At the time of the Agreement, the U.S. Food and Drug Administration had asked Endo to withdraw reformulated Opana ER from the market for safety reasons and Endo had publicly announced its intention to comply with the FDA’s request,” Matthew Maletta, Endo’s Executive Vice President and Chief Legal Officer, said in a statement to PNN.

“Significantly, as Endo has explained to the FTC, the Company has not launched or licensed any new opioid product(s) since that time, and the FTC’s theory that Endo would do so in the current litigation environment but for the Agreement is preposterous.”

“Far from being anticompetitive, the 2017 Amendment resolved a dispute between the parties that could have kept Impax's lower-priced generic product off the market entirely,” Amneal said in a statement. “We are confident there is no unlawful restraint in the 2017 Amendment, because nothing in the agreement prevents Endo from competing, and we intend to vigorously defend against the FTC’s claims.”

The FTC decision to sue Endo and Amneal a second time was approved on a split 3 to 2 vote by the agency’s commission. The complaint seeks monetary relief and a permanent injunction to prohibit the companies from engaging in similar conduct.

Extended-released oxymorphone is approved for the treatment of moderate to severe pain.  

Contact Congress to Make Changes in Federal Pain Study

By Richard Lawhern, PNN Contributor

On January 20, I sent a letter by email to the Acting Director and senior staff of the Agency for Healthcare Research and Quality (AHRQ).  The letter requests the federal agency to immediately withdraw its recent review of prescription opioids and other treatments for short-term acute pain. 

Grounds for the request are clear evidence of unjustified anti-opioid bias by the authors and gross fatal errors of methodology – all of which invalidate the review as resource material for efforts to revise and expand the 2016 CDC opioid guideline.

The anti-opioid bias of Roger Chou and his co-authors is revealed by their selective cherry-picking of references that fail to explore the major effects of genetics in patient response to opioid therapy, as well as improperly generalized findings based on trials of weak opioids like tramadol, which were applied to all opioids.

The AHRQ authors also omit any exploration of serious side effects and mortality caused by non-opioid treatments such at acetaminophen.

But the most fundamental error in the methods of the AHRQ Review is improper use of “meta-analysis” to lump together data and outcomes from multiple small-scale studies of opioid therapy for acute pain. A major underlying assumption of meta-analysis is that patient response in each trial is distributed on a Normal (bell-shaped) curve. However, this assumption doesn’t work for patients treated with prescription opioids.

The distribution of patient outcomes is actually “bi-modal.” One group of patients may experience side effects from opioids, but very little short-term pain relief; while a second group may have substantial pain relief from just one dose of opioid medication. This reality invalidates the major findings of the AHRQ review.

A detailed critique of the AHRQ study is available on my website. Feel free to review and share this information with your personal physician.

AHRQ is fully aware of the errors noted above but has no intention of responding to demands for a correction of its malfeasance and fraud.  Thus, it may be necessary for the U.S. House Government Oversight and Reform Committee to direct AHRQ to withdraw or rewrite its review. 

Such an action has precedents.  In 2015, the Oversight Committee reviewed complaints from the Washington Legal Foundation and others concerning inadequate public hearings on the CDC’s proposed opioid guideline. The committee sent a letter to then-CDC Director Thomas Frieden asking him to explain why so much secrecy was involved in the drafting of guideline and why it wasn’t made publicly available.

Faced with a congressional inquiry, CDC reversed course by delaying the guideline’s release and publishing the draft in the Federal Register for a 30-day public comment period. A new advisory committee was also formed to review the guideline, which resulted in some changes to its final recommendations.

Urgent Action Request

A similar effort is urgently needed by pain sufferers and their advocates to bring the AHRQ review to the attention of Congress, specifically to the House Government Oversight and Reform Committee. Those who wish to involve the committee in corrective action should telephone any or all of the Congressional offices of committee members. 

It is very doubtful that the representatives will actually see anything you leave in their contact portals online. But short, focused telephone calls are harder to ignore. The telephone numbers for members of the House Committee can be found here. If you reach a staff member in their office, you might offer the following information:

1) Identify yourself and provide a call-back number. If you are a medical professional, state your qualifications (i.e. “I am a board certified physician” or “I am a former nursing professional now disabled by agonizing pain.”)

2) If you are a resident of the Representative’s district, say so. You don’t have to be a constituent to make your input.

3) Tell the staffer that you want to report fraud and abuse to the Representative and to the House Congressional Oversight and Reform Committee. 

“I want the Committee to demand corrective action from the Agency for Healthcare Research and Quality, in the same way it did in 2015 when it told the CDC to re-open its proposed opioid guideline to extended public review.”

“AHRQ published a review of treatments for acute pain in December 2020. The review is deliberately biased against the only therapies that work, deeply flawed by errors of scientific method, and outright fraudulent in its conclusions. This review must be withdrawn for independent review.”

4)  Thank the staffer for their time.  Ask “May I expect a callback from a member of the Representative’s staff?”

This is an opportunity to be heard, despite the lies being shouted by anti-opioid fringe groups like Physicians for Responsible Opioid Prescribing (PROP) and Shatterproof.

It is time for you to speak up!

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

Finding Grace in Family-Induced Pain and Trauma

By Cynthia Toussaint, PNN Columnist

About 20 years ago, my mother called to share what felt like a disorientating thought.

“Cynthia, of all the members of our family, you’re the together one, the capable one and the successful one,” she said.

Though flattered, my thinking was, “How can that be? I’m the daughter with all the problems. The pain, the wheelchair, the one left childless without her show-biz career.”

I’m guessing now that my mother was intuitively letting me in on a secret -- a generations-long family secret. By telling me I had the right stuff, Mom was revealing that I’d broken the trauma cycle. She potently advised that I never let my family members hold me back, to “never not succeed because of them.”

That day I realized I’d done something exceptional, but I didn’t fully understand what it was. You’d think 38 years of chronic pain would have opened my eyes, but it took a cancer crisis for me to deeply examine what my mother was shedding light on.

I come from a profoundly dysfunctional family (domestic violence, divorce, mental illness, suicide, alcoholism, etc.), one so traumatizing my doctor believes that the toll of trying to fix my family, along with the inflammation of CRPS, was what gave me cancer. To have a chance at survival, I had to walk away from the toxic members of my family, which was the hardest and best decision of my life.

Unfortunately though, walking away might not be enough. Now that I’m in remission, I’m concerned that my inability to unlock from my frequent harmful thoughts about the trauma of past assaults will bring on a swift and more aggressive cancer recurrence.

Trauma Release

Enter EMDR (Eye Movement Desensitization & Repossessing). For the uninitiated, EMDR is a psychotherapy treatment designed to alleviate the distress associated with traumatic memories. For years studies have shown that people with serious adult-onset illnesses – including high-impact pain and cancer – experienced many adverse childhood events (ACE’s), as I did.

I’ve long considered doing EMDR for trauma release, but feared stirring up the debilitating depression that my family often sparks. I won’t lie to you. My EMDR plunge has been god-awful, as it’s brought on a ton of expected grieving and even rage. That being said, I’m sticking with it - and astonished by EMDR’s effectiveness and the insight it evokes.

My phenomenal practitioner, Kathy, has pointed out two major, life changing themes. The first, that family trauma is handed down over many generations, adversely changing our gene expression through what’s termed epigenetics. Sadly, I was born into the thick of this ever-rolling harm.

When I was seven, my dad jumped off a bridge due to severe mental illness. Much dysfunction led to his suicide, but this was the tipping point that my family of origin never recovered from.

After sharing what limited knowledge I had of my dad’s past, Kathy quickly assessed that, like me, he had a traumatic childhood. I was stunned to learn that his parent’s alcoholism, affairs and abandonments, along with all of the denial and covering-up, deeply wounded him. That insight gifted me great empathy for the person who shattered my world.

Mom’s side of the family was equally trauma-inducing. After her parent’s ugly divorce and Grandma having my loving grandfather committed to an institution, she had my mother kidnapped. Legend has it that this broke my aunt Grace’s heart, as her agonizing death from leukemia at age 20 soon followed.

To this day, even with advanced dementia, my mother describes her own grandmother as “a witch, the most evil person I ever met.” It goes on and on.

Healing My Inner Child

I finally understand that I have a family tree evergreen with trauma, the root of all my physical and psychological illness.

The second theme Kathy put forth is that to release my trauma we have to heal my “inner child.” I now understand that even as a fetus I took in the negative chemicals and vibe of my mother’s nightmarish situation – and it’s my inner child who’s carrying the greatest injury. The work is tricky because to reach her, we must maneuver around the many protective, life-preserving mechanisms she’s used for 60 years.

With Kathy’s guidance via Zoom, I’m slowly making friends with my inner child. While I want to protect her from the knowledge of a tragic future, ultimately I have to be vulnerable enough to let her spill the repressed memories of violence and dysfunction that host the lion’s share of our trauma.

My hope is that by healing my inner child I can end the cycle of excruciating harm I endure when I think about my family’s countless trespasses. If I can get to a strong landing point of understanding and release, my depression will turn to just sadness – and from there I can move on with better wellness.  

I want to be free.        

No matter the outcome, Mom was on to something. Thankfully, I’ve cracked the family code by asking why and doing the hard work. As Kathy reminds me, I choose “to think, not drink” - and because I don’t maintain the dysfunctional status quo, I’ve “jumped out of a sinking ship.”

All this time I thought my life had been upended by pain, but I now realize it was family trauma that caused every ounce of my misfortunate.    

This insight lovingly brings me to my aunt Grace who, by breaking the family trauma cycle, saved my mother. While I never met her, I see Grace as an angel and forever feel a deep connection, so much so I named my work for her goodness.

We’ve always been compared, and I now see that our similarity extends beyond looks and personality. A quote I continue to hear in my research about generational trauma is “The first born daughter often carries what remains unresolved in the mother.”

Grace and I were the eldest daughters and gave everything to save our broken families, an impossible task.

GRACE HAeRING

It cost my dear aunt her life – and I think she’s proud watching me fight for mine.

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 15 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.”

Finding Strength in Little Things

By Mia Maysack, PNN Columnist

It’s a New Year, but that doesn’t necessarily mean all that much to those of us who continuously hurt. We are seemingly living in a perpetual state of Bill Murray-like Groundhog Days -- experiencing the same painful occurrences over and over and over.  

Yet there are limitations to becoming accustomed to the inevitable, because the ailments themselves are ever changing and evolving, requiring us to adapt to them.  

As a result of COVID-19, millions of people who couldn't begin to imagine what it's like to be housebound all day, missing out on important gatherings and enjoyable outings, know what it’s like to have a disease threatening their physical and emotional health.  

It's a unique opportunity to bridge a gap with people who were once unable to relate to me. They learned how I've existed for years: shut-in, limited, alone, and cautious of potential harm or consequences.  

Despite the obstacles, I chose to fixate on gifts of other sorts, the “little” things such as life itself. There is always an amount of suffering that plays a role in my everyday existence, but isn’t that just how life goes in general?  

Some moments are better than others, which I am extraordinarily grateful for. Especially after having lived a majority of my years when there was no improvement, almost leading to complete hopelessness. 

If I did not greet another sunrise, it's true there would be no more discomfort. But it would also mean no more beauty either. Rain, for example, is a necessary requirement for anything to prosper. And the individual storms we all experience in unique ways are intended for personal growth. They heighten our empathy, compassion, understanding and acceptance.

Through the trauma of persistent agony, I've learned how to meet others by both respecting and honoring their journeys, despite the differences between us. Incurable and untreatable circumstances can produce a special humbleness that permits clarity in seeing each other as equals, regardless of the circumstances.  

Being faced with so much difficulty in activities of daily living is daunting to say the least. There were times when I have been swept up and consumed by all that I cannot do, hindering the possibility of investing energy and thought into what I can do. Or how to face challenges in more creative ways, as opposed to merely accepting “no” for an answer.  

Honoring my conditions has helped me to surpass them in some regards. This has assisted in strengthening an ability to fully appreciate what I'm able to accomplish, even if it's minor. Because everything we make it through is a victory in its own right.  

When reflecting upon all we've endured, there should be a tremendous amount of pride in our refusal to give up -- despite how tempting it has been and may still be at times. When we're in need of a reminder, bear witness to how far we've come and the power we have to make it through anything. Though be it far from easy, the quality of our lives is the most worthwhile investment.

Had we not been dealt the hand we received, we would not be who we are. Each of us harbors so much value to offer one another and the world through our experiences. There is always something to be learned and taught.

The treachery of pain continues to test me, but knowing I am not alone provides a sense of relief -- not that I'd wish this on anybody. I've gained a lot that I can now turn around and offer back to the world through legislative action, community involvement, public service and educational efforts. None of which would be possible without each and every twist and turn on this road we call life. 

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.

Serious Complications Caused By Poorly Treated Pain

By Forest Tennant, PNN Columnist

Most anyone will tell you that blood pressure goes up due to pain. What is almost unrecognized in medical practice today, however, is that untreated or undertreated pain has such profound and devastating effects on the cardiovascular and endocrine systems that it will inevitably shorten the lifespan of individuals with intractable pain syndrome (IPS).

Constant pain elevates adrenaline and glucose at the same time that it overstimulates the autonomic nervous system, resulting in these cardiovascular (CV) complications:

• High Blood Pressure (Hypertension)               

• Elevated Pulse Rate (Tachycardia)                             

• Elevated Cholesterol (Lipids)                       

• Arteriosclerosis  

• Angina Pectoris

• Cardiac Arrythmias

• Heart Attack

• Sudden Death

The body needs a rest from constant pain to rejuvenate and re-energize the body’s CV and endocrine systems. The first goals of pain treatment must include the attainment of at least some pain free or nearly pain free hours, which enables the body to sleep and let the CV and endocrine system recuperate.

Calcium Complications

For many years, patients, families and doctors were bewildered when a chronic pain patient developed osteoporosis, scoliosis, arthritis, or even their teeth fell out. Now we know why. It is primarily because IPS causes multiple abnormalities in the endocrine system that lower calcium levels. 

Intractable pain is a huge stress that never shuts off, so it causes constant demand on the body’s glands to elevate the “Big 3” hormones: insulin, cortisol and adrenaline. This is made worse if pain is untreated or undertreated. 

Over time, the constant elevation of cortisol causes calcium to dissolve and leave the tissues of the teeth, joints and spine. Vertebrae may become so fragile with osteoporosis that the spine may collapse in places and give you scoliosis. When calcium leaves the joints, you get arthritis. People with IPS frequently have fractured hips and knee joints that have to be replaced. 

When cortisol is raised too long by constant pain, testosterone and estradiol levels may drop, and these two hormones are critical to prevent osteoporosis as they function to build bone, joints and teeth.

When cortisol is too high for too long, glucose and insulin are also raised, causing a nutritional state that may reduce vitamin D, magnesium, and other nutrients critical for tooth and bone maintenance.  

All persons with IPS and their families need to know about the cardiovascular and endocrine complications from untreated or undertreated pain. You may also need to inform your medical and dental practitioners about these health risks. Ask them to test you for high blood pressure, elevated pulse rate, high cholesterol and glucose levels. Most can easily test you for osteopenia (early osteoporosis), endocrine function and vitamin D levels.

Forest Tennant 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 has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

Rare Disease Education: Paget’s Disease

By Barby Ingle, PNN Columnist

One of my personal missions is to educate others on the rare diseases and conditions that cause chronic pain. This year I will be posting a series of monthly articles on 12 different rare and ultra-rare conditions.

According to the National Human Genome Research Institute, a rare condition is generally considered a disease when it affects fewer than 200,000 people in the United States. Just because a person has a rare disease does not mean that they are alone. Altogether, rare disease affects up to 30 million Americans.

There are about 7,000 rare diseases, but less than 5 percent of them have an FDA approved treatment option. I have seen some great improvements over the past few years in recognizing rare diseases and in developing new treatments.  

The first condition being looked at in this series is Paget’s disease of bone. I do not know anyone with this condition personally, but I thought it was a good place to start. My hope is you will recognize some of these symptoms and can pass them on to give someone hope, help and a place to start a conversation with their health providers.

Paget’s disease causes the body to generate new bone tissue faster than normal, resulting in bones that are softer, weaker and more fragile. According to the Mayo Clinic, risk factors for Paget’s disease include being over the age of 40, male, having a family history of the condition, and being of European descent. Researchers suspect a combination of environmental and genetic factors contribute to the disease.

They test for Paget’s disease in three ways to get a diagnosis: x-rays, blood tests and bone scans. In its early stages, most people have no symptoms, so Paget’s disease is sometimes found by accident, such as when one of the tests is done for another reason and they end up with Paget’s as the final diagnosis.

Symptoms of Paget’s disease include difficulty walking, bone deformities, bone fractures, bowlegs, headaches, and joint stiffness. The chronic pain associated with Paget’s disease typically shows up first in the back, hip, legs or skull.

The pain and other symptoms worsen over time. Initially, patients often have a “pins and needles” sensation in their extremities, but the pain can become very unpleasant over time. Bone pain is typically described as extreme tenderness and aching, and is present whether you are moving or not.   

Currently there is no cure for Paget’s disease but there are some treatments that may be helpful, such as bisphosphates and dietary supplements to help strengthen bones. As with many rare and chronic diseases, early intervention is best, but a lifetime of care is important.

There are a few online support groups for patients with Paget’s disease, such as the Facebook page of the Paget's Association. You can also check out this video that helps explain the condition further.

I will be back next month to continue this series with a new rare condition.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.  

Why Water Soaking Works

By Forest Tennant, PNN Columnist

There is no medical treatment older than water soaking. It is legend and still works. Adhesive Arachnoiditis and other Spinal Canal Inflammatory Disorders (SCID’s) are particularly helped by water soaking – so much so that we consider it an essential treatment.

Why water soaking relieves pain has been a mystery until recent times. It is known that damaged or “dead” nerves won’t conduct  the body’s natural electric currents, so electricity backs up and is trapped or retained in body tissues. The result is more inflammation and pain “all over.”

Electricity has a negative charge and water tends to have a positive charge, so it pulls out excess electricity from the body, reducing inflammation and pain. If the water contains a mineral, it will pull out even more electricity. That is why mineral hot baths and Epsom Salts are so effective.

The lumbar-sacral spinal canal is loaded with nerve roots. They constantly conduct electric currents that go from the spinal cord to the legs, feet, bladder, sex organs and intestine.

Any damage, by any cause, to the spinal canal nerve roots causes a backup of electricity which is painful and produces even more inflammation. To prevent disease progression, daily water soaking can be most helpful.

Types of Water Soaking

You don’t have to have a jacuzzi or pool to do water soaking. A bathtub is great, but most of us take showers. When you shower, keep the water as hot as you can stand, and massage and stretch your back muscles as the hot water runs over your back. Soaking for 10 to 15 minutes in a jacuzzi, pool or bathtub is preferable, but hot showers morning and night is about as good.

Don’t forget the Epsom Salts. The body normally excretes its excess electricity into the air, mainly through nerve ends in the hands, head and feet. Foot soaking, particularly with Epsom Salts or other herbal salts, is an age-old remedy that attracts the electric currents that travel down the sciatic and other leg nerves.

Another soaking technique is a warm, water-soaked towel or other wet wrap placed over the lower back for 5-10 minutes. Remember, water soaking isn’t an “all wet” idea.

Forest Tennant is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from bulletins recently issued by the Arachnoiditis Research and Education Project . Readers interested in subscribing to the  bulletins should send an email to tennantfoundation92@gmail.com.

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

Ehlers-Danlos Is Common Cause of Intractable Pain

By Forest Tennant, PNN Columnist

Ehlers-Danlos Syndrome (EDS) is the best known of the hereditary collagen disorders. From birth, persons with EDS are preprogrammed to start dissolving collagen at some location in the body, as it causes a defect in the way collagen is produced or maintained throughout all tissues.

The fine and soft tissues that are the most susceptible to dissolution are found in the joints, ligaments, eyes, spine, gums and intestine. When these tissues deteriorate and begin to dissolve, inflammation, pain and neurologic impairments begin. The tissue may or may not rebuild and usually leaves permanent damage, pain and/or disability.

Collagen deterioration may start in childhood or middle age. An early sign is being double-jointed or extremely flexible.

It is unknown currently what the exact mechanism is, or what precipitating factors such as virus or trauma that initiate this reaction. Regardless, collagen dissolution will move to a new and different locations once the hereditary preprogramming begins.

EDS commonly hits the spinal canal and spine. The first major problem may be a cerebral spinal fluid leak, protrusion of a disc, Tarlov cyst or arachnoiditis. Given its predilection to hit the spine, EDS may produce the complication of Intractable Pain Syndrome (IPS). In fact, it seems to be emerging as the first or second most common cause of IPS.

EDS Screening Test

Our research has found that a high percentage of patients who have EDS don’t know it. If you have developed a spine or pain problem without an injury or other obvious cause, you should be screened for EDS.

This questionnaire was recently published to help screen people for EDS.   

1. Do you have pain in multiple locations?

2. Do you have extreme fatigue?

3. Are you clumsy sometimes and fall or walk into objects?

4. Are some of the joints in your hands, feet, elbow, hips or knees “loose” or quite flexible?

5. Have you had a lot of sprains or joint dislocations?

6. Is your skin thin in places?

7. Are you double-jointed or able to bend your fingers, arms, or ankle backward?

8. Are your hands and feet cold much of the time?

9. Do you bruise easily or have bruises that suddenly occur?

10.  Is your skin “stretchy” in some places?

11.  Are you constipated a lot?

12.  Do you suffer from heart burn or frequent episodes of food regurgitation? 

If you answered “Yes” to 6 or more of the 12 questions, you should see a doctor and have the diagnosis confirmed by a genetic test or skin biopsy.

If you have EDS or a hereditary collagen disorder, there are foods, supplements and hormones you can take to help restore and rebuild lost tissue. Click here to see them. These tissue building recommendations from the IPS Research and Education Project are meant to complement and supplement your treatment program, but are not a substitute for inflammation and pain control.

Forest Tennant 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 has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

A Little Shop of Horrors: VA Opioid Guideline for Veterans

By Richard Lawhern, PNN Contributor

As a volunteer patient advocate and healthcare writer, I read a very large volume of scientific and policy literature. And as a 21-year military veteran myself, I am particularly interested in Veterans Administration policies for treatment of chronic pain. Thus I reviewed with interest the VA’s 2017 Clinical Practice Guideline for Opioid Therapy for Chronic Pain.  

I also checked with a medical professional who practices in the VA hospital system to verify that the “guidance” of this document is still in force. It is. 

In my view, the VA opioid guidance is a “little shop of horrors” guaranteed to drive patients into medical collapse, and in some cases suicide. These direct quotes from the VA guideline should illustrate my concerns:

• “Since [2010], there has been growing recognition of an epidemic of opioid misuse and opioid use disorder (OUD) in America, including among America’s Veterans…. At the same time, there is a mounting body of research detailing the lack of benefit and severe harms of [long-term opioid therapy].”

• “We recommend against initiation of long-term opioid therapy for chronic pain.”

• “We recommend alternatives to opioid therapy such as self-management strategies and other non-pharmacological treatments.”

• “If prescribing opioid therapy for patients with chronic pain, we recommend a short duration… Consideration of opioid therapy beyond 90 days requires re-evaluation and discussion with patient of risks and benefits.”

• “We recommend against long-term opioid therapy for pain in patients with untreated substance use disorder.”

• “If prescribing opioids, we recommend prescribing the lowest dose of opioids as indicated by patient-specific risks and benefits…. There is no absolutely safe dose of opioids.”   

• “As opioid dosage and risk increase, we recommend more frequent monitoring for adverse events including opioid use disorder and overdose… Risks for opioid use disorder start at any dose and increase in a dose dependent manner. Risks for overdose and death significantly increase at a range of 20-50 mg morphine equivalent daily dose.” 

My VA colleague, who asked not to be identified, offers the following observations concerning VA policies in treating pain. This is paraphrased to protect the physician from retaliation:   

“The VA simply does not allow me the flexibility I need to manage my patients’ pain. All that is said about honoring our veterans and all the expressions of pride in the level of care the VA provides veterans thus ring hollow. The VA exhibits far greater pride in the percent reduction in opioid prescriptions it has been able to achieve, even giving out awards to physicians who make particularly large contributions to this effort.”

Let’s also compare these highly restrictive policies with a June 2020 letter from the American Medical Association to the CDC’s Chief Medical Officer on the pending revision of the 2016 CDC guideline:

• “We can no longer afford to view increasing drug-related mortality through a prescription opioid-myopic lens.”

• “Some patients with acute or chronic pain can benefit from taking prescription opioid analgesics at doses that may be greater than guidelines or thresholds put forward by federal agencies.”

• “A CDC Guideline only focused on ‘opioid prescribing’ will perpetuate the fallacy that by restricting access to opioid analgesics, the nation’s overdose and death epidemic will end.”

• “The CDC Guideline has been misapplied as a hard policy threshold by states, health plans, pharmacy chains, and PBMs.”

• “It is clear that the CDC Guideline has harmed many patients — so much so that in 2019, the CDC authors and HHS issued long-overdue … clarifications that states should not use the CDC Guideline to implement an arbitrary threshold.”  

The AMA recommended that the CDC should advocate explicitly for the repeal of all federal and state legislation that places hard limits on opioid prescribing.  Another recommendation is that physicians should treat both chronic pain and opioid addiction among the few patients who deal with both issues.  Discharging these patients or forcibly tapering them should no longer be automatic.

AMA is also on public record with the position that so-called “high prescriber” letters issued by prosecutors and state Prescription Drug Monitoring Programs (PDMPs) constitute a witch hunt against physicians and their sickest patients, and is a violation of legal due process.  

Not addressed by either the AMA or the VA is the reality that there are presently no field-tested tools that reliably evaluate quantitative risk of opioid tolerance, dependence or addiction in individual patients. 

As Nora Volkow, MD, and Thomas McMillan, PhD, of the National Institutes of Health wrote in The New England Journal of Medicine:  

“Unlike tolerance and physical dependence, addiction is not a predictable result of opioid prescribing. Addiction occurs in only a small percentage of persons who are exposed to opioids — even among those with pre-existing vulnerabilities... Older medical texts and several versions of the Diagnostic and Statistical Manual of Mental Disorders (DSM) either overemphasized the role of tolerance and physical dependence in the definition of addiction or equated these processes (DSM-III and DSM-IV).

However, more recent studies have shown that the molecular mechanisms underlying addiction are distinct from those responsible for tolerance and physical dependence, in that they evolve much more slowly, last much longer, and disrupt multiple brain processes.”  

A further complicating factor for the VA is that we now know beyond any reasonable contradiction that their attempt to restrict opioid prescribing is unsupported by science. 

There is no relationship between rates of opioid prescribing versus rates of overdose-related mortality. The demographics simply don’t work:  Although they have the highest rate of opioid prescribing for pain, seniors over age 62 have the lowest rates of overdose-related mortality.  Youths under age 19 receive the fewest number of opioid prescriptions, but have three to six times higher overdose mortality relative to seniors.

It is arguable that the VA guideline is just as fatally flawed as the CDC guideline, and is responsible for significant numbers of patient medical collapses and suicides among veterans.  Both documents fail conclusively on grounds of both medical science and medical ethics and both should be withdrawn immediately.

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

A Pain Poem: Zooming to Christmas

By Carol Levy, PNN Columnist

‘Twas the night after Thanksgiving
And all through the house
No one was stirring,
The only sound was my oww’s

It took all my strength
To bend and to stretch
In hopes of getting
Myself undressed.

Christmas will be at my house,
Said my Aunt Joan.
Don't anyone worry
All you'll need is a phone.

The Zooming will work,
I said with a grin.
To myself I added,
“This year the pain won’t win.”

So many other times
If I groaned or I grimaced
The others round the table
Gave me a look saying, “You're finished.”

Covid is awful,
Zooming a wonderful thing.
I can take my pills or sit silently,
And move the camera away from me.

Santa is giving me
Quite a gift.
Where the pain can’t be seen,
Or called a grift.

This year I expect better,
I know that sounds weird.
But it seems social distancing and masks
Are gifts to be cheered.

I hope you all have
Pain free holidays.
But even if there is pain,
It can be a time for hoorays.

Family and friends together
So close, yet not near.
Can make it a holiday
We don't have to fear.

If the pain starts to get us,
We won’t have to leave the table.
Just turn the webcam away,
And do what we're able

The point of this poem
Is to find a way
To keep the negative people
From making it a bad holiday.

My hope is for none of the negativity
That’s often brought.
It happens too often,
What getting together has wrought.

My wish to you all
Is the same as old Mr. Claus
Merry Christmas to all,
Full of fun and guffaws.

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.”

Potentiation: How to Make Opioid Medication More Effective

By Forest Tennant, PNN Columnist

The oldest measure to either minimize the dosage or make an opioid more effective has been to add a chemical agent that makes the opioid act longer and stronger. This concept is known as “potentiation” and there are many examples of it throughout history.

Various herbs such as Boswellia (frankincense) were used with opium in ancient times to make it more potent. The Greek physicians Dioscorides and Galien recorded the use of opium combined with cannabis for many therapeutic purposes.

Physicians during the American Revolution titrated alcohol with opium for tuberculosis. The legendary gambler and gunslinger John Henry “Doc” Holiday survived many years with this regimen for his tuberculosis or sarcoid.

British physicians combined aspirin with morphine around the turn of the 19th Century. Later they determined that a stimulant-type drug, such as cocaine, made morphine more effective for the person with severe pain. This was called the Brompton Cocktail, named after the Royal Brompton Hospital in London, where it was used to treat cancer patients in the 1920’s.

Beginning around World War II, American pharmacological companies began combining the opioids codeine, hydrocodone and oxycodone with substances such as aspirin, caffeine, acetaminophen, ibuprofen and phenacetin. Today, the most popular potentiating combinations are acetaminophen with codeine, hydrocodone or oxycodone.

An opioid should almost never be taken alone by a person with Intractable Pain Syndrome. Why? First, you don’t get the full effect of the opioid. Second, without a potentiator, you will need to take a higher opioid dose when a lower one would suffice and have fewer risks.

Every IPS patient needs to identify at least two potentiators that won’t bother their stomach or cause headache, drowsiness or dizziness.

Available Potentiators

• Caffeine Tablet

• Mucuna

• Boswellia

• Gabapentin

• Taurine

• CBD Products

• Adderall

• Methylphenidate

• Dextroamphetamine

• Benadryl

• GABA

Consider switching to an opioid with acetaminophen, such as Vicodin or Percocet, or take a potentiator with your opioids. Don’t take alcohol, marijuana or a benzodiazepine (Xanax, Ativan, Valium, Klonopin) at the same time you take an opioid. Separate the two by at least an hour to avoid over-sedation. 

Forest Tennant 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 has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

Health Canada Is Hiding the Truth About Rx Opioids

By Barry Ulmer, Chronic Pain Association of Canada

True or false? Doctors triggered our overdose crisis. Duped by pharma, they overprescribed narcotic pain relievers and turned innocent patients into addicts. Now we have a black market of stolen prescription drugs — they remain the problem — with a little heroin and street fentanyl mixed in.

True, says Health Canada, whose policy since 2016, made behind the backs of doctors and patients, has been to squeeze prescription opiate supply. Never mind that two million Canadians with serious pain can’t get effective treatment anymore, since most don’t need it anyway.

False, says science. Bad pain can need opiates when nothing else works. By choking legal supply in its haste to curb overdose rates and raise its own ratings, government lit a match to an illicit supply (meth, cocaine, heroin, narcotics) on slow boil since at least 1980. Fierce prescribing cuts now drive a robust black market of cheap heroin and street fentanyl, and a parallel crisis of untreated pain and suicide.

Who’s right? Here are the facts: since 2011, opioid prescribing has tanked while deaths still climb. Street drugs kill. Prescribed drugs don’t. Slashing prescriptions to contain addiction is daft.

Why hide the truth? Why torture people with pain and ignore illicit drugs? Doesn’t government want to combat preventable deaths? For years, we’ve asked Health Canada just that.

They dodged us at every turn. (Just listen to our bizarre 2018 call with the Minister's office.) Eventually, they sent us a list of studies they said justified deprescribing. In June 2019, we sent back our evaluation of the list. It didn’t match theirs. They said they’d get an assessment from independent experts. They didn’t. Then they said they had more research, a big batch; they’d send that, too. They didn’t.

Our Freedom of Information Request

In February, we filed a freedom of information request. We asked for specifics — studies, research, correspondence — that back Health Canada’s claim, as of 2016, that prescribing leads to overdose deaths.

Since we know the medical literature, we knew not to expect much. But this past September, we got 2,928 pages — sort of.  About a third were redacted: long series of pages along with almost all study publication dates, bibliographic details, and online links. It was padded with stuff like a 466-page global report from the UN in three languages. Most of it had nothing to do with what we’d asked for.

Most of it was also published long after 2016 — so it can’t have led to the official start of deprescribing. Only a quarter of it was Canadian, mostly an echo chamber of federally-funded agency reports all quoting each other, with some government-funded guidelines thrown in.

There was no correspondence whatever and little independent research. The bulk of it wasn’t research at all, just a circle jerk of commentary and opinion.  Here’s what we got:

• Mostly US/some UK stuff — commentary, media reports, policy, guidelines, limited research

• Papers using CDC drug abuse stats that CDC corrected and downgraded long ago

• Studies using outdated definitions of “opioid use disorder” that make everyone a “substance abuser”

• Duplicated and even triplicated papers

• Foreign-language papers

• Pre-publication “author manuscripts,” some unproofed and incoherent

• Observational rather than experimental studies

• Papers whose data and fine print directly counter their conclusions

• Papers drawing “new” conclusions by cherry-picking old literature

• Researchers quoting their own work as authoritative

• Papers asserting without documenting the dangers of opiates

• Studies drowning in limitations (which their authors often acknowledge)

• Government statements on generalities, synthesizing other government statements on generalities

• Hand-wringing from six Ottawa-funded agencies, and research these agencies funded in turn

• Serial papers from a handful of Health Canada-preferred researchers

• Much heavily-redacted head-scratching on cannabis

• Studies on acute — not chronic — pain

• Papers blaming patients for their pain

 What on-point studies we got often champion opioids.

Those that don’t typically reiterate prevailing anti-opioid claims, downplay the devils in their details, hype their conclusions, and are compromised by their authors’ conflicts of interest. (These conflicts are usually disclosed, since joining the bandwagon is valued over bias risk.)

On-topic items make our case, not Health Canada’s:

• Half of Canadian adults with chronic pain (a third with “very severe” pain) have suffered for 10 years plus

• Five comprehensive studies of studies (Cochrane reviews) plus a large German review endorse opioids    for five types of chronic pain; four more Cochranes didn’t find useable studies on other pain types

• Two Cochranes plus Canadian research say drugs used to combat substance abuse don’t relieve pain

• Newfoundland’s OxyContin Task Force report on six OxyContin-involved deaths in four years concludes that properly-prescribed pain medications are safe and effective

• With doses now “under the recommended thresholds, most US providers are careful in their prescribing”

• British Columbia, Alberta and Ontario coroners find repeatedly that most overdose deaths involve street fentanyl

• Early prescription use does not predict addiction in Vancouver IV drug users, some of whom develop pain after they begin using

• US data can’t predict addiction and death rates in Canada

• “Dental Rx’s addict young people” is a tooth-fairytale, say three studies. In one, just one of 97,462 kids  who got prescribed opioids after wisdom tooth surgery died within a year — cause not specified

• A review of 38 studies pegs “problematic use” at “<1 to 81%” (it’s entirely redacted)

• Claims of “significant increases” in prescription opioid abuse aren’t quantified. One “huge increase” was of low-dose formulations

• Guesstimates and “author consensus” fill data gaps. An Ottawa-funded researcher’s three papers all call for continued prescription slashing while acknowledging a serious lack of data

• Canadian researchers who routinely disparage opiates for pain tend to be just two or three government- funded teams mining a single public Ontario database to write variations on their theme

• Physical dependence is routinely called “opioid use disorder.” Occasionally, the distinction appears in small print. Clarification by the head of the US National Institute on Drug Abuse is here but redacted

• Three Canadian reports plus one from Seattle say “one-size-fits all” dosing is dangerous and “significantly” hikes overdose risk; cuts to legal supply since 2016 risk destabilization of patients; prescription slashing leads to the end of care

• A 2020 Canadian investigation into bias in “pro-opioid” prescribing guidelines conveniently stops just short of investigating bias in the “anti-opioid” American and Canadian guidelines of 2016 and 2017

• A Canadian sociologist tracks 20 years of news to show how “overprescribing” became a hot button. Our top three news outlets didn’t mention “inadequate pain care” until 2016. “Legitimate users” were either “dependent” or had overdosed on their prescriptions

• “Twenty-five years of pain education research — what have we learned?”: All 13 pages redacted

A descriptive list of all the items we got, and the release itself, are available on request.

What we didn’t get are the many large studies that sandbag Health Canada’s deprescribing policy, like these:

• Risks of developing persistent opioid use after major surgery are tiny

• In a huge sample, mortality risk from overdose is just 0.022% annually

• Toxicology and prescribed medication histories among people experiencing fatal illicit drug overdose in BC

• Illegal street drugs, not prescriptions, now powering opioid abuse

• New survey data confirm that opioid deaths don’t correlate with pain pill abuse or addiction rates 

Health Canada has ignored pertinent studies that don’t suit them and misread others. No careful, independent research endorses deprescribing for any reason, and certainly not as a means to contain overdoses.

Health Canada provided its research only after years of hedging, when we finally resorted to an FOI request— and then only after six months. We believe they had no list and compiled one retroactively, especially since they padded it with off-topic items and with items that postdated their policy.

Prescribing practice and regulation in Canada is now based on the low-quality “investigations” of partisan, government-paid researchers. Canadians deserve better. Now that quality research unequivocally endorses their treatments, Canadians with pain must have effective care restored to them NOW. 

Barry Ulmer is Executive Director of the Chronic Pain Association of Canada, a patient advocacy group

7 Ways to Treat Intractable Pain Syndrome

By Forest Tennant, PNN Columnist

Intractable Pain Syndrome (IPS) requires a care program custom-made for each individual person, depending on their underlying painful condition and clinical severity.

There are therapeutic, pharmacologic, dietary and physical measures you can take that specifically target the cause of IPS. Step One in finding relief and recovery is to target the cause of the pain, and not just take the “shotgun” approach with only symptomatic pain relievers. A multi-faceted approach is needed.

The 7-component treatment outlined here is to aid patients, families and medical practitioners in formulating an individualized IPS care program

1) Suppression of Inflammation

Underlying Cause: The injury or disease that originally produced the pain may continuously generate inflammation that requires suppression by a variety of means. Common measures to reduce inflammation include anti-inflammatory agents, electromagnetic therapies, local injections or topical agents.

Central Nerve Inflammation: IPS is caused by central nervous system (CNS) inflammation (neuroinflammation) that destroys or damages neurotransmitter systems. Only some treatment agents cross the blood brain barrier and suppress neuroinflammation. Some common agents: naltrexone, ketorolac, indomethacin, methylprednisolone, acetazolamide and  dexamethasone.

2) Sleep Restoration

It is during sleep that the CNS regenerates the neurotransmitters you need for pain control. Adequate sleep is necessary for this to occur. Some common agents: Ambien, trazadone, temazepam (Restoril), amitriptyline, melatonin and Benadryl.

3) Control of Electric Currents

Some drugs now called “neuropathic” normalize electric current conduction, which is erratic due to nerve damage. Some common agents: gabapentin (Neurontin), pregabalin (Lyrica) and benzodiazepines (Klonopin and Valium).

4) Pain Control

The constant pain of IPS is composed of two types of pain: ascending and descending. IPS control requires agents for both types.

Ascending Pain: Some common agents: cannabinoids, opioids, ketamine, clonidine, kratom and naltrexone (if not already on opioids).

Descending Pain: Some common agents: amphetamine salts (Adderall), phentermine, modafinil, methylphenidate, mucuna. 

5) Hormone and Neurotransmitter Supplementation

Groups of hormones now known as neurosteroids, and biochemical molecules known as neurotransmitters, are made in the brain and spinal cord. Their function includes suppressing inflammation, rebuilding damaged tissue and to provide pain control. Analgesic/pain-relieving drugs will not be effective if any neurosteroid or neurotransmitter is deficient. Neurotransmitter testing is now available.

Hormones: DHEA, pregnenolone, testosterone, progesterone.

Neurotransmitters: dopamine-noradrenaline, serotonin, GABA.

6) Anabolic Measures (Tissue Building)

In IPS, tissue degeneration is constantly present due to inflammation. Some genetic connective tissue/collagen diseases such as Ehlers-Danlos Syndrome (EDS) have a built-in, constant tissue degenerating component (catabolic).

Tissue building (“anabolic”) measures are essential to counteract tissue degeneration, and several agents have been identified that do this: nandrolone, human chorionic gonadotropin (HCG), colostrum, deer antler velvet, and amino acid/collagen supplements are recommended.

7) Disease Specific Exercise

Spinal fluid circulates in and around the brain and spine. It washes out biologic waste products such as inflammation. It also brings nutrients to the inflamed and/or damaged nerves for healing.

Exercises that enhance spinal fluid flow include walking, rocking in a chair, and gently bouncing. Practice exercises and stretches that will prevent tissue shrinkage, paralysis and dysfunction of your extremities or other organs that are specific for your underlying condition. 

All seven of these components should be considered for inclusion in an IPS care program. 

Forest Tennant is retired from clinical practice but continues his groundbreaking 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 has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

Living With Chronic Pain and Finding Happiness During a Pandemic

By Victoria Reed, Guest Columnist

These are trying times. For those of us struggling with chronic pain, we know what it means to be tough. We battle our own bodies, doctors and even unsympathetic family members every day. We know what it’s like to struggle and make sacrifices -- because that’s what we have to do to survive.

With the arrival of Covid-19, it has added another layer to our already complex lives. But how do we learn to live with this virus and find happiness in the face of overwhelming adversity? I don’t have all the answers, but I do know what’s working for me and what brings me joy. 

I have lived with chronic pain for all of my adult life. My first problem began during my teens, when I developed persistent, unexplained pelvic pain. After many doctor visits and three exploratory surgeries, a sympathetic and kind OB/GYN reproductive endocrinologist finally gave me the answer: endometriosis.

Receiving treatment for endometriosis, which included hormone therapy and surgery to remove adhesions, didn’t take all of the pain away, but it did restore my fertility and allow me to eventually have babies.

Then, during my mid 20’s, my back suddenly went out. I had had no falls, accidents or injuries that I could recall. That would set the stage for another type of pain to take over my life, which there really was no cure for. I got a diagnosis of degenerative disc disease at age 27.

I managed the pain with physical therapy to tighten my core muscles, regular use of ice and heat, rest and pain medication. I also had a caudal nerve block. But by age 32, I began having new symptoms of joint swelling in random joints. Back to the doctor I went!

During that visit with a rheumatologist, I had requested to be tested for rheumatoid arthritis (RA) because my twin sister had recently received that diagnosis. Sure enough, blood tests confirmed that I did indeed have antibodies specific to RA. For those of you who have RA, you know that it is.a.beast.

VICTORIA REED

Over time, beating back RA became like a full-time job; take this medication, take that medication, inject this, apply that. Eventually, after trials of several expensive biologic medications and DMARD’s (disease-modifying antirheumatic drugs), we found one that worked. I get it by IV infusion about once a month at the Cleveland Clinic.

Biologics suppress the immune system to help bring down the inflammation that damages the joints, heart and lungs. RA also causes chronic, debilitating fatigue. It’s like you haven’t slept in a month and got run over by a truck, not like the tiredness you feel when you only had a few hours of sleep the night before.

Then a year or two later, during a routine visit with my rheumatologist, she listened to me as I described being sore all over. After a thorough exam, I received the diagnosis of fibromyalgia, another chronic and painful condition.

Here we go again! When will it stop? Some people might just want to give up, but I had three kids to raise, and it was important for me to fight for my health for them. My 18-year marriage had become a casualty and giving up was not an option!

With the diagnosis of fibromyalgia, I had to adapt to the reality that I was never going to be free of pain and fatigue. They had become my constant companions. I managed, and my kids grew up watching my struggle. They are now 16, 19 and 21 and are happy, well-adjusted individuals, but they’ve had to watch me deal with pain their entire lives. 

Since it was obvious that my body hated me, why would it stop assaulting and insulting me? Guess what? It did not. I have since been diagnosed with FOUR more autoimmune and related disorders: Hashimoto’s thyroiditis (thyroid attack), Sjogren’s syndrome (mucous membrane attack), Raynaud’s phenomenon (small artery abnormality) and the loveliest of all: LADA (Latent Autoimmune Diabetes of Adulthood), a form of Type 1 diabetes that is primarily treated with insulin.

Fast forward to 2020. Covid-19 arrives? No problem! I’m used to challenges. I’m used to pills, needles, pain and fatigue. Wearing a mask is the least of my worries, as I’ve been fighting to stay alive and healthy for all of my adult life and a few of my teenage years.

These days, I make time to do the things that please me, such as riding my 2-wheel Italian scooter, gardening, camping and traveling. I even learned how to ride a motorcycle at age 50! I do not dwell on my pain.

Living in northeast Ohio limits year-round sunshine, but when it is warm and sunny outside, that’s where you’ll always find me! Peace comes when I am at one with nature. Happiness is a state of mind. We can choose to be miserable or we can choose to be happy, and despite my health challenges, I am grateful and thankful for the blessings that I do have.

So, to all of you pain warriors, hang in there! Look for and hold onto the positive. Surround yourself with positive people. Cut out those friends and family that are negative energy (I did). Make time to do things you enjoy. It’s not easy, but it is possible to find peace and happiness in the face of overwhelming adversity.

Let’s hope that Covid-19 will someday be a thing of the past. But if not, we’ll be alright. 

Victoria Reed lives in Cleveland, Ohio.

PNN invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.