Public Health Experts Cautious About Reopening

By Julie Appleby, Kaiser Health News

As many states begin to reopen — most without meeting the thresholds recommended by the White House — a new level of COVID-19 risk analysis begins for Americans.

Should I go to the beach? What about the hair salon? A sit-down restaurant meal? Visit Mom on Mother’s Day?

States are responding to the tremendous economic cost of the pandemic and people’s pent-up desire to be “normal” again. But public health experts remain cautious. In many areas, they note, COVID cases — and deaths — are still on the rise, and some fear new surges will follow the easing of restrictions.

“Reopening is not back to normal. It is trying to find ways to allow people to get back out to do things they want to do, and business to do business,” said Dr. Marcus Plescia, chief medical officer at the Association of State and Territorial Health Officials. “We can’t pretend the virus has gone away. The vast majority of the population is still susceptible.”

So far, state rules vary. But they involve a basic theme.

“They are making assumptions that people will use common sense and good public health practice when they go out,” said Dr. Georges Benjamin, executive director with the American Public Health Association.

As states start to reopen, people will have to weigh the risk versus benefit of getting out more, along with their own tolerance for uncertainty. The bottom line, health experts say, is people should continue to be vigilant: Maintain distance, wear masks, wash your hands — and take responsibility for your own health and that of those around you.

“It’s clearly too early, in my mind, in many places to pull the stay-at-home rules,” said Benjamin. “But, to the extent that is going to happen, we have to give people advice to do it safely. No one should interpret my comments as being overly supportive of doing it, but if you’re going to do it, you have to be careful.”

An added caveat: All advice applies to people at normal risk of weathering the disease. Those 60 or older and people with underlying health conditions or compromised immune systems should continue staying home.

“Folks who are at higher risk of having a more severe reaction have to continue to be very careful and limit contact with other people,” Plescia said.

Should I go to the beach?

There’s nothing inherently risky about the beach, said Benjamin. But, again, “if you can, avoid crowds,” he said. “Have as few people around you as possible.”

Maintain that 6-foot distance, even in the water.

“If you are standing close and interacting, there is a chance they could be sick and they may not know it and you could catch it,” Plescia said. “The whole 6-foot distance is a good thing to remember going forward.”

Still, “one thing about the beach or anywhere outside is that there is a lot of good air movement, which is very different than standing in a crowded subway car,” he said.

Even so, recent images of packed beaches and parks raise questions about whether people are able or willing to continue heeding distancing directives.

Do I really need to stay 6 feet away if I have a mask?

Yes, for two reasons. First, while masks can reduce the amount of droplets expelled from the mouth and nose, they aren’t perfect.

Droplets from sneezing, coughing or possibly even talking are considered the main way the coronavirus is transmitted, from landing either on another person or surface. Those who touch that surface may be at risk of infection if they then touch their face, especially the eyes or mouth. “By wearing a mask, I reduce the amount of particles I express out of my mouth,” said Benjamin. “I try to protect you from me, but it also protects me from you.”

And, second, masks don’t protect your eyes. Since the virus can enter the body through the eyes, standing further apart also reduces that risk.

Should I visit Mom on Mother’s Day?

This is a complex choice for many families. Obviously, if Mom is in a nursing home or assisted living, the answer is clearly no, as most care facilities are closed to visitors because the virus has been devastating that population.

There’s still risk beyond such venues. Data from the Centers for Disease Control and Prevention shows 8 out of 10 reported deaths from the coronavirus are among those 65 or older. Underlying conditions, such as heart or lung disease and diabetes, appear to play a role, and older adults are more likely to have such conditions.

So, what if Mom is healthy? There’s no easy answer, public health experts say, because how the virus affects any individual is unpredictable. And visitors may be infected and not know it. An estimated 25% of people show no or few symptoms.

“A virtual gathering is a much safer alternative this year,” said Benjamin.

But if your family insists on an in-person Mother’s Day after weighing Mom’s health (and Dad’s, too, if he’s there), “everyone in the family should do a health check before gathering,” he said. “No one with any COVID symptoms or a fever should participate.”

How prevalent COVID is in your region is also a consideration, experts say, as is how much contact you and your other family members have had with other people.

If you do visit Mom, wear masks and refrain from hugging, kissing or other close contact, Benjamin said.

What about going to a hair salon?

Again, no clear answer. As salons and barbershops reopen in some states, they are taking precautions.

States and professional associations are recommending requiring reservations, limiting the number of customers inside the shop at a given time, installing Plexiglas barriers between stations, cleaning the chairs, sinks and other surfaces often, and having stylists and customers wear masks. Ask what steps your salon is taking.

“Employees should stay home if they are sick or in contact with someone who is sick,” said Dr. Amanda Castel, professor of epidemiology at Milken Institute School of Public Health at the George Washington University. “Also, employers should make sure they don’t have everyone congregating in the kitchen or break room.”

Some salons or barbers are cutting hair outside, she noted, which may reduce the risk because of better ventilation. Salons should also keep track of the customers they see, just in case they need to contact them later, should there be a reason to suspect a client or stylist had become infected, Castel said.

Consider limiting chitchat during the cut, said Plescia, as talking in close proximity may increase your risk, although “it feels a little rude,” he admitted.

What if your stylist is coughing and sneezing?

“I would leave immediately,” he said.

What about dining at a restaurant?

Many states and the CDC have recommendations for restaurants that limit capacity — some states say 25% — in addition to setting tables well apart, using disposable menus and single-serve condiments, and requiring wait staff to wear masks.

“That’s the kind of thing that does help reduce the chance of spread of infection,” Plescia said.

If your favorite eatery is opening, call to ask what precautions are in place. Make a reservation and “be thoughtful about who you are having dinner with,” said Plescia. Household members are one thing, but “getting into closer physical contact with friends is something people should be cautious about.”

Overall, decide how comfortable you are with the concept.

“If you’re going to go to a restaurant just to sit around and worry, then you might as well do takeout,” he said.

And travel?

Consider your options and whether you really need to go, say experts.

Driving and staying in a hotel may be an option for some people.

If hotels are adequately cleaned between guests, “you could make that work,” said Plescia. Bring cleaning wipes and even your own pillows. Again, though, “if you’re going to see an elderly parent, you don’t want to contract something on the way and give it to them.”

Regarding air travel — airlines are taking steps, such as doing deep cleaning between flights. Fresh and recirculated air goes through special HEPA filters. While there is little specific research yet on the coronavirus and air travel, studies on other respiratory and infectious diseases have generally concluded the overall risk is low, except for people within two rows of the infected person. But a case involving an earlier type of coronavirus seemed to indicate wider possible spread across several rows.

Maintaining distance on the plane and in the boarding process is key.

“Wear a mask on the plane,” said Benjamin.

And plan ahead. How prevalent is the coronavirus in the areas you are traveling to and from? Are there any requirements that you self-isolate upon arrival? How will you get to and from the airport while minimizing your proximity to others?

But if it’s not essential, you might want to think twice right now.

“People who absolutely don’t have to travel should avoid doing it,” said Plescia.

What about attending religious services?

The distance rule applies as houses of worship consider reopening.

“As much as you can within religious rules, try to avoid contact,” said Benjamin.

He is not giving any advice on Holy Communion, saying that is up to religious leaders. But, he noted, “drinking from the same cup raises the risk if a person is sick or items are touched by anyone who is sick.”

Finally, keep in mind that much is being learned about the virus every day, from treatments to side effects to how it spreads.

“My own personal approach is, try to play it on the cautious side a bit longer,” said Plescia.

Castel agreed.

“We need a little more time to fully understand how COVID-19 works and more time to ramp up our testing, find treatments and hopefully a vaccine,” she said. “We all have social distancing fatigue. But we can continue to save lives by doing this.”

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

The Other Side of Cannabis

By Madora Pennington, PNN Columnist

I knew from my friend Nick’s Facebook feed that he was a cannabis enthusiast. His posts preached how it cures pretty much everything and will lead us to world peace.

Nick never tired of encouraging me to try it for my pain from Ehlers-Danlos Syndrome, even as I explained repeatedly that since my mother was psychotic, I avoid all drugs which may cause psychosis. Theoretically, I am at higher risk for that adverse reaction.

Psychosis is a disconnection from reality. A person may have delusions, hallucinations, talk incoherently and experience agitation. Since the 1970s, researchers have been investigating whether cannabis can trigger a psychotic break or full-blown schizophrenia. Daily users of highly potent cannabis are five times more likely to develop psychosis. The risk comes not only from genetic factors, but also from early-life neglect or abuse and even being born in the winter.

Having a rare and complicated medical condition, I get a lot of advice. I took Nick’s insistence I go on cannabis as kindness, as I take all unsolicited health tips. Our social media friendship grew. When my husband and I took a trip to his part of the world, he invited us to stay with him.

Nick picked us up at the train station in the English countryside looking like a dashing movie star. Slim and trim in a crisp Oxford shirt and Ray Bans, spryly maneuvering our luggage, he was still attractive in his 70s. Speaking English like Prince Charles, he confessed, “I am actually a cannabis farmer. I expect no trouble from the local police, but would you prefer to get a hotel room in town?”

My husband and I once risked our lives in the back alleys of Hong Kong to get me a fake Hermes bag. We did not need to consult with each other. We opt for adventure. I would not miss my chance to live a Jane Austen fantasy.

We ate off Nick’s three centuries-old family silver, the forks worn down from hundreds of years of scooting food across the plate. We sat beneath the Regency era portraits of his ancestors. Nick had a room devoted to his cannabis crop, growing fast underneath sun simulating lamps. The odor from the plants permeated his entire country home.

In real life, just as on Facebook, Nick’s favorite subject was the virtues of cannabis. He had been using it since he was a young man. Decades ago, he had spent a couple of years in prison for distribution. Recently his wife had left him over his devotion to marijuana. It was clear from Nick’s stories and life choices that cannabis had created tremendous tension with his family.

We talked of him coming to stay with us in Los Angeles, how we could all go to San Francisco to visit the Haight, as Nick was a genuine 1960s hippie. But leaving home to travel was a problem for him. When he does, he has to ask a friend to tend to his plants, which also means asking the friend to break the law.

Our days with Nick at his charming cottage were governed by his need to partake. Our visits to local sites were cut short, so he could be done driving and functioning for the day, and get home to get high. He did not seem to enjoy the excursions and seemed overwhelmed by being out and about, his anxiety growing, urging us to wrap up and get back home.

Cannabis Side Effects

Like Nick, many people are certain that marijuana helps them get by. On it, life is tolerable and pleasant. Anxiety is calmed. They are out of pain and able to sleep. But are they really benefiting?

At first, marijuana has a calming effect, but over time it negatively changes the way the brain works, causing anxiety, depression and impaired social functioning. With regular use, memory, learning, attention, decision-making, coordination, emotions, and reaction time are impaired. Heavy cannabis use lowers IQ

This damage can persist, even after use stops. Teenage users are more likely to experience anxiety, depression and suicidality in young adulthood. According to the CDC, about 1 in 10 marijuana users will become addicted. For people who begin using younger than age 18, 1 in 6 become addicted.

As is the case with other mood-altering substances, cannabis withdrawal symptoms — which include irritability, nervousness, anxiety, depression, insomnia, loss of appetite, abdominal pain, shakiness, sweating, fever, chills and headache — provokes the desire to use.

If someone is using cannabis to escape emotional distress, they never get the chance to deal with underlying problems. Psychiatrist Dr. David Puder recommends to his patients on cannabis that they stop in order to benefit from therapy.

“When they are off of marijuana, they have the ability to be present and really process what they will need to process in therapy in order to get over anxiety and depression,” Puder says, noting that users will often experience a flood of emotions and memories once they stop.

Medical marijuana has been approved for chronic pain and over 50 other health conditions by various states. Whether it actually helps with pain is uncertain. The U.S. Surgeon General warns the potency of marijuana has changed over time and what is available today is much stronger than previous versions. Higher doses of THC (the psychoactive chemical in cannabis) are more likely to produce anxiety, agitation, paranoia and psychosis. Consumers are not adequately warned about these potential harms.

House Guests

Our friend Nick was sure his marijuana use was his choice and that he was not addicted. He insisted my husband and I get high with him.

What is a polite house guest to do? Go along, of course, although we prefer whiskey and a steak. Nick promised we would love it, and that we were free to go upstairs and have sex and open up about anything. We giggled awkwardly. I ingested the smallest possible dose.

Nick then got higher than we had seen him during our entire visit, wolfing down his dinner in minutes. Then, after promising we’d have a tremendous evening of emotional openness and transcendent sharing, he burst into tears recounting how he was the victim of violence in his youth.

I felt for him, it was a horrifying event. Was this unresolved trauma the cause of a lifetime of drug use, denial and self-isolation? We had to wonder. It was truly awkward and uncomfortable, but Nick didn’t seem to remember his outburst. When we returned home, he continued to hound me to take up cannabis.

Madora Pennington writes about Ehlers-Danlos Syndrome and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

The opinions expressed in this column are those of the author alone and do not inherently reflect the views, opinions and/or positions of Pain News Network.

How to Cope with Anxiety During the Pandemic

By Ann Marie Gaudon, PNN Columnist

Some folks do not cope well when anxiety comes for a visit. They don’t consider anxiety a normal emotion or call to action, but rather as something bad that must be gotten rid of.

There is no fault here, we live in a “feel good” society bombarded by messages that if we feel distress of any kind, we must do or take or buy something to get rid of it.

I explained how emotions contain a message in my column about loneliness during the coronavirus lockdown. The message is that you must make an effort to end your loneliness by changing your behaviour. Expand your world. Talk with people, laugh with people and cry with people. Find ways to interact.

Anxiety is another emotion. The research is very clear. If you try to deny, dismiss, avoid or overreact to anxiety, it is very likely to get worse. This in turn, can wreak havoc on your overall health.

Consider for a moment that you have a “struggle switch” for anxiety (or any emotion). If you overreact to anxiety or try to avoid it, your struggle switch is flipped “ON.” 

The message during a pandemic is loud and clear: There is something serious going on and we must take action to protect ourselves and others. That anxious feeling you have is trying to protect you, not harm you. It’s a very old evolutionary response. Very good copers have learned how to make peace with their anxiety, realizing it is there in an attempt to keep them safe.

Here are ways to flip that struggle switch to “OFF.”

Pay attention on purpose. Slow down, notice and name what you are feeling. For example, “I am feeling anxious. My heart is pounding fast, and my stomach has knots in it.”

Let these bodily sensations be just as they are, without judging or evaluating them. Just breathe, slow down, and let go of the urge to do anything at all with this feeling of anxiety.

Again, this is a normal response to an abnormal situation and your body is wise to this, so just be still and observe. If you need help with this, there are endless mindfulness activities online that allow you to have your experience without trying to escape from it. Here is one you can try.

Make an intention. Ask yourself, “What will I do with this feeling of anxiety? My mind sees this as something that makes me weak and vulnerable, however I choose not to get hooked by this. I accept this anxiety as mine. What will I do with it now that it is here?”

How you respond will be clear if you remember what is important to you. Even in a world that is fearful, you can be in touch with your values. Ask yourself, “What do I want to stand for in the face of this pandemic?”

You can hold this anxiety gently, as you would a nervous puppy, and change your behaviour -- with puppy in tow.

Expand your experience. Rather than running away from anxiety, learn from it. Anxiety tells us that we are alive and there is work to be done to protect ourselves. Even in times of fear and uncertainty, there is opportunity. Necessary life changes are not all negative. You can use this anxiety as a wake up call.

In addition to protective measures such as social distancing, are there other behaviours you can take that reflect how you want to be in this world? Can you commit to actions that improve the way you treat yourself and others?

Infectious disease, like any life stressor, presents a major challenge to our coping skills. I speak about this on my website. Binge eating and zoning out on Netflix will not improve your coping skills. They are just ways to try to escape from anxiety. Hoarding toilet paper or panic buying will also not accomplish this. They are signs of over-reacting to anxiety.

Instead, focus on what you can do in this moment. Worry is normal and natural, and can help us to eliminate threat. However, worry cannot get all of our troubles to take a hike. Once we have taken our protective actions, we can focus on how to make our lives better and to nurture and enjoy our relationships and all that is important to us.

Once that struggle switch is turned “OFF,” you will see that you can commit to your values – even with anxiety coming along for the ride. 

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.

Should Children Be Prescribed Cymbalta?

By Pat Anson, PNN Editor

The Food and Drug Administration has quietly expanded the use of an antidepressant to treat fibromyalgia in pediatric patients between 13 to 17 years of age – despite the known risk of suicidal behavior by children on antidepressant drugs.  

Cymbalta (also known by its generic name, duloxetine) is a serotonin and norepinephrine reuptake inhibitor (SNRI) made by Eli Lilly that was first approved by the FDA as a treatment for depression in 2004.

In the years that followed, Cymbalta’s use greatly expanded as it was also approved as a treatment for anxiety, diabetic neuropathy, chronic musculoskeletal pain and fibromyalgia in adults.

The approvals came with a major caveat: a black box warning label that specifically cautioned patients and providers that “Cymbalta is not approved for use in pediatric patients” because it could increase the risk of suicidal thinking and behavior in children.

2007 Cymbalta warning label

So why is the FDA now approving the use of Cymbalta by children?  

The federal agency issued no press release when it sent a letter to Eli Lilly on April 20 notifying the company that it was approving its longstanding request to allow Cymbalta to be prescribed for juvenile fibromyalgia. Lilly itself has made no public announcement about the approval.

Health and Human Services Secretary Alex Azar, who oversees the FDA, was President of the U.S. division of Eli Lilly from 2012 to 2017, a period when the cost of Cymbalta doubled.

‘No New Safety Concerns’

The FDA’s approval of Cymbalta for pediatric cases appears to be based on a single placebo-controlled study -- sponsored by Eli Lilly -- in which 184 children with juvenile fibromyalgia were given duloxetine, placebo or a combination of the two over the course of 39 weeks.

Eli Lilly not only funded the study, but its employees designed it, collected data, conducted the analysis, and wrote the article that reported on its findings, which was published last year in the journal of Pediatric Rheumatology.

While the study did not show that duloxetine was significantly better than placebo, patients taking the drug did show a modest improvement in pain severity. Notably, Eli Lilly researchers also said they found “no new safety concerns” about duloxetine.

Which doesn’t mean there were no safety concerns, it just means they didn’t find any new ones. Duloxetine is well known to have side effects in adults, such as fatigue, nausea, mood swings and weight gain.

“The safety profile of duloxetine observed in this study was similar to that observed in previous pediatric duloxetine trials of other indications, as well as in duloxetine trials in adults with FM (fibromyalgia). Nausea, headache, vomiting, and decreased appetite were the most frequently reported AEs (adverse events) in the present study, which are similar to those reported previously in adult population with FM,” wrote lead author Himanshu Upadhyaya, Global Lead Physician in Psychiatry at Eli Lilly.

But a closer look at the study findings – which anyone can see for themselves at clinicaltrials.gov – shows that 6 children taking duloxetine exhibited alarming signs of self-harm. There were two attempted suicides and one intentional drug overdose. One child intentionally injured himself and two had suicidal thoughts. Three other children on duloxetine experienced depression, hallucinations and a seizure.

Granted, nine children in total isn’t that many – but in a small study with 184 participants, it’s concerning – especially when no one in the placebo group had the same behavior or symptoms, according to study results posted on the government-run website.

However, in their published findings in Pediatric Rheumatology, Eli Lilly researchers downplayed the suicidal thinking and other side effects associated with duloxetine, saying they were “not significantly different” than those of children on placebo. The two attempted suicides aren’t even mentioned.

“In the present study, the suicidal ideation events reported with duloxetine were not significantly different from placebo-treated patients. Similar results were reported previously, including the exposure-adjusted analysis of suicidal ideation events, which have not shown any significant difference between duloxetine and placebo,” researchers said.

“None of the SAEs (serious adverse events) reported were considered to be study drug-related and none have led to study discontinuation. There were no deaths reported during the study. There were no significant differences between groups in suicide-related behaviors or ideation.”

Eli Lilly went to great lengths to conduct the study. Its researchers said it took almost 7 years and significant recruitment efforts to find enough children to participate with parental approval. Most of the participants were in the United States, but some were recruited as far away as India and Argentina.

Suicide has long been associated with duloxetine, going back to its earliest clinical trials. A 19-year college student participating in one study killed herself in 2004, four days after being taken off the drug. Four other patients who took duloxetine during clinical trials also committed suicide, although Eli Lilly said at the time there was no evidence directly linking those deaths to the drug.

Withdrawal ‘Brain Zaps’

A common complaint of patients who take duloxetine is how quickly they become addicted and what happens when they stop taking the drug. Many complain of severe withdrawal symptoms such as mood swings, nausea, fatigue and electric-like sensations called “brain zaps.”

PNN columnist Crystal Lindell went through withdrawal when she started weaning herself off Cymbalta in 2015. Her column on that experience (see “How I took Myself Off Cymbalta”) has become a reference point for hundreds of patients trying to get off the drug.

Crystal thinks expanding the use of Cymbalta to include pediatric patients is not a good idea.

“I would urge extraordinary caution when it comes to giving Cymbalta to teenagers,” Crystal says. “When I was first given Cymbalta about seven years ago, I was 29. At that time, the doctor told me I may be too young to take it because it was known to cause suicidal thoughts in young people. He advised me to be in touch with him if that starts to happen. And I was much older than the age group they just approved to take this drug.  

“I hope doctors will be more cautious about giving Cymbalta to teenagers than they have been about giving it to adults. I always advise readers to listen to their doctor first and foremost, but don't be shy about pressing them on which medications they prescribe you. Ask them about side effects and withdrawal so that you can feel comfortable about what you’re taking.”

The FDA’s new warning label for Cymbalta still cautions about suicidal thinking and behavior in children, but no longer warns that the drug is not approved for use by pediatric patients.

NEW CYMBALTA WARNING LABEL

Duloxetine’s checkered history is well known at the FDA. The agency’s adverse events reporting system has recorded over 33,500 serious cases involving duloxetine since 2007, most of them classified as psychiatric disorders. Over 3,900 of those adverse events resulted in death.

Although Eli Lilly’s patent on duloxetine expired years ago, Cymbalta remains a top money-maker for the company. Cymbalta sales during the first quarter of 2020 were up 28% from a year ago to more than $210 million.

In addition to treating juvenile fibromyalgia, Cymbalta could be repurposed in other ways to boost sales for Eli Lilly. Over 300 clinical studies are underway to explore the use of duloxetine to treat a smorgasbord of other conditions, including shingles pain, cancer pain, surgical pain, post-traumatic stress disorder, attention deficit disorder, and cocaine addiction.

In short, a drug with risky side effects that was originally developed to treat depression is being used for health conditions it was never intended to treat. And more could be added to the list.

Take Your Shot (Or Not)

By Mia Maysack, PNN Columnist

Modern day pandemics aside, we’re fortunate to live in an age when there are continual advances in medicine. More forward momentum in the pursuit of migraine and headache treatment has occurred within the past two years than we’ve seen in decades. New injectable drugs help prevent migraine and others promise relief during migraine attacks.

Injections for migraine are not new to me. I received about 30 Botox shots every 90 days for longer than most people even had their headaches. Let's just say, it was for an extraordinarily long time.

A few years ago, I was awaiting another round of shots to the head and noticed my tummy was in knots for some reason. The nurse came in and told me they were trying a new brand of Botox, which basically means they found a cheaper version. This meant you sometimes get a batch of the medicine you've become accustomed to and sometimes it was a mystery combo, mixed with “similar” fillers containing the "same" active ingredient of botulinum toxin.

At the last session, I'd gone in for my regularly scheduled shots and got one of the worst migraines ever instantaneously. This was out of the normal for me and it led to almost a yearlong cluster that forced me to pause my med school pursuit and nursing career. I still have yet to bounce back from it.

They claimed I could have possibly received a “bad batch,” which I accepted due to how many times I've gotten this treatment with little to no adverse effects. Things cannot always be perfect, right? 

I wonder, however, still living with the repercussions to this day, if it was an adverse or allergic reaction to something.

Adding to my doubts is that I had been waiting on the doctor for over 45 minutes. Don't mind me! I don’t have anything else happening in my life, not like they even bothered asking. 

While waiting, I looked over at all the syringes full of who-knows-what and realized it just didn't align with me, my purpose or path anymore. 

I have nothing but good things to say about Botox, as it sincerely helped me for many years. It's one of the only things that ever has. But as we all must understand, no one knows the long-term repercussions of consistent use of any treatment option. 

Honoring the fact that we would all do just about anything to lessen our pain, I willingly took well over a thousand shots out of desperation for even a small fraction of relief. But what it often boils down to is trading one problem for another, even without being aware of it at the time.

Regarding a lot of the options out today, we are the guinea pigs and lab rats. There's no way of knowing how they could interfere with our well-being over time.

Earlier that same week, I was at a different appointment and they were inquiring about medications I take. By then, I had phased myself off nearly everything and Botox was the last traditional path I hung onto.

I told the nurse that, she replied and I quote: "That's probably for the best, I cannot tell you how many have come through with liver issues and kidney failure from their exposure to consistent prescription drug use." 

I’m proud to say my approach to healthcare is entirely holistic these days. Most providers are not extensively trained on how to treat pain, that's why they call it practicing medicine. They're only human as well and everyone is different -- thereby resulting in different outcomes for everybody -- hence the one-size-fits-all approach not working.

I share my Botox experience not to suggest anything or to instill fear, but to show that we don't always know what we are doing and it's no one else's responsibility to inform us. It is your body and your life. I urge you all to take control and remain curious, ask important questions, and don't eat everything that's fed to you. 

Unfortunately, we are living in a time where our best interest comes only after a check has been written. But by that point, as in my case, the damage may have already been done. I left that office and don't plan on ever going back.

Remember that every patient cured is a customer lost. Look out for and protect yourself!

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.

Why Coronavirus Is a Modern-Day Titanic

By Dr. Lynn Webster, PNN Columnist 

The Titanic carried 20 lifeboats. Only about half of the fabled ship's 2,207 passengers and crew members could fit in them. Anyone who didn’t get a seat on a lifeboat almost certainly would not survive the icy waters of the North Atlantic.  

Women and children were saved before the men, but there was social and economic stratification, too. The policy aboard the Titanic was to look after the first-class and standard-class passengers first.  

Even when the ship was sinking and all passengers were in equally imminent danger, the highest-ranking passengers were given priority during the lifesaving efforts. Third-class passengers, who were situated farthest away from the lifeboats, were left to find their own way to safety.  

The outcome was sadly inevitable. Of the first-class Titanic passengers, 61 percent survived. Of standard-class passengers, 42 percent lived. Only 24 percent of third-class passengers made their way to safety.

Your survival depended on who you were, and on the value others placed on your life. 

Some People Are Still Marginalized

Today, we are undergoing a very different disaster, but the same disparities are still in play. Our socioeconomic status, as defined by our education, income and occupation, is an important factor in the opportunities we are given. It also determines the quality of our lives and our ability to cope with setbacks.

The fate of the Titanic passengers is a metaphor for the trajectory of the coronavirus victims today. Socioeconomic status partially determines which cities and towns get hit the hardest, which populations face the greatest risk, and who endures the highest sickness and death rates from COVID-19.

Business Insider reports that "many wealthy families are having their private chefs and housekeepers procure and sanitize their groceries." The wealthy may not worry as much about coming into contact with the virus, because they can afford to hire people to take nearly all the risk for them.

The Wall Street Journal reports that nearly one-fifth of the population in some states have lost their jobs due to the pandemic. Lower-income workers are most affected.

Essential workers, including healthcare workers, first responders, law enforcement, grocery clerks, delivery workers and others, are seen as the heroes of the pandemic. They are keeping the gears of our society running so we can all survive.

However, just like the cooks, cleaning staff and maintenance personnel on the Titanic, the humblest workers today face the greatest risk of being left behind or most exposed to the danger.

Some of these heroes have inadequate health insurance, or none at all. Less than half of the bottom 25 percent of wage earners have sick leave, and only 24 percent of them have personal leave.

Everyone Deserves a Fighting Chance

There are racial and ethnic disparities related to the pandemic as well as socioeconomic injustices. That is partly due to the inequities of our healthcare system and living conditions.

According to the Washington Post, more than 5 million native Americans are especially vulnerable to the virus because they have high rates of diabetes, cancer, heart disease and asthma -- all of which put them at a greater risk from COVID-19.  

The New York Times reports that African Americans and Latinos suffer disproportionately from poverty, poor healthcare and chronic diseases like diabetes, hypertension and asthma. They have higher rates of becoming ill and dying from COVID-19 in New York City, Chicago, Boston, and other cities.  

These minority members are less likely to have primary care physicians and access to hospitals with life-saving equipment. They may have been inadequately informed about how they can protect themselves from infection, especially if English is not their primary language. They may live with multiple generations in crowded quarters, making it more difficult to maintain social distancing and self-quarantine protocols, and increasing the likelihood of spreading the virus to parents and grandparents.  

It may not be possible for everyone to be treated with equanimity, but the magnitude of the disparity we observe now will only exacerbate the inequality we see after the pandemic. The haves will continue to prosper, while the have-nots will find themselves in a deeper hole. As this occurs, the seeds for further social unrest are being sown.   

The pandemic is exposing many challenges for our society. But there is probably no greater need than to ensure that everyone has access to a lifeboat.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Experimental Treatment Targets Neuropathic Pain

By Pat Anson, PNN Editor

Researchers in Denmark have developed a promising new compound to treat neuropathy that targets the hyper-sensitized nerves that cause chronic pain. The experimental compound – a peptide called Tat-P4-(C5)2 -- has only been tested in mice, but researchers hope to begin clinical trials on humans soon.

"We have developed a new way to treat chronic pain. It is a targeted treatment. That is, it does not affect the general neuronal signaling, but only affects the nerve changes that are caused by the disease," says Kenneth Lindegaard Madsen, PhD, Associate Professor at the University of Copenhagen.

"We have been working on this for more than ten years. We have taken the process all the way from understanding the biology, inventing and designing the compound to describing how it works in animals, affects their behaviour and removes the pain.”

Madsen and his colleagues recently published their findings in the journal EMBO Molecular Medicine .

The image below shows the compound Tat-P4-(C5)2 after it is injected into the spinal cord. The compound (purple) penetrates the nerve cells of the spinal cord (yellow), but not the surrounding cells (the cell nuclei are blue). The compound blocks neuropathic pain signals – the kind associated with diabetic neuropathy, shingles, phantom limb pain and chemotherapy-induced pain — from being sent to the brain.

UNIVERSITY OF COPENHAGEN

In a previous study, the researchers showed in an animal model that use of the compound can also reduce tolerance and the risk of addiction. They believe the compound will be more effective and safer than the anti‐convulsants, antidepressants and opioid medications now used to treat neuropathy.

"The compound works very efficiently, and we do not see any side effects. We can administer this peptide and obtain complete pain relief in the mouse model we have used, without the lethargic effect that characterises existing pain-relieving drugs," said Madsen.

"Now, our next step is to work towards testing the treatment on people. The goal, for us, is to develop a drug, therefore the plan is to establish a biotech company as soon as possible so we can focus on this."

Is Your Pain Tolerable?

By Pat Anson, PNN Editor

There has long been controversy over the way pain is measured by healthcare providers. Critics say the two most widely used methods, the numeric 0 to 10 pain scale and the Wong Baker Pain Scale, are too subjective because they rely on patients to self-report their pain levels.

Some even claimed that asking patients about their pain encourages excess opioid prescribing. There was never any evidence to support that argument, but in 2017 the Centers for Medicare and Medicaid Services (CMS) caved into political pressure and dropped three survey questions that asked Medicare patients about the quality of pain care they received in hospitals.   

A new method of measuring pain is now being proposed, one that is designed to reduce opioid prescribing and other pain treatments. It hinges on a simple question:

“Is your pain tolerable?”

In a new study published in JAMA Network Open, researchers say asking patients that question could help doctors decide whether opioids and other treatments are really necessary.

"Because of concerns about overtreatment of pain with opioids there has been an enormous effort to rethink how we ask patients about pain," says lead author John Markman, MD, director of the Translational Pain Research Program at the University of Rochester Medical Center.

"Knowing that patients consider their pain to be tolerable, physicians wouldn't necessarily prescribe a medication with serious risks or expose them to surgery.”

Markman and his colleagues asked 537 primary care patients if their pain was tolerable, and then had them rate the intensity of their pain on the 0 to 10 scale.

Most patients who had mild pain (a score of 1 to 3) or moderate pain (4 to 6) said their pain was tolerable. Even with a severe pain score of 7, nearly 40% said their pain was tolerable. But after that, at level 8 or higher, severe pain becomes less and less tolerable.

JAMA NETWORK OPEN

“Our findings confirmed the intuitive assumption that most patients with low pain intensity find their pain tolerable,” Markman wrote. “In contrast, the tolerability of pain rated between 4 and 6 varies substantially among patients. In this middle range, if a patient describes pain as tolerable, this might decrease the clinician’s inclination to initiate higher-risk treatments.  A substantial subgroup of patients with severe pain reported their symptoms as tolerable.”

One weakness of the tolerable question is that it measures pain at a single point in time – and chronic pain patients often experience flares that can make their pain intolerable. It also assumes that every patient is alike and has the same level of tolerance.

Markman says numeric pain scales have "very little relevance" when patients who have lived with chronic pain for several years visit their doctors.

"If, instead, a patient could say 'my pain is tolerable when I'm doing this but intolerable when I'm doing that,' and it's in the context of that patient's life, I frankly think that's much more useful, and is what doctors really want to know," Markman said.

"In order to transform how we treat pain to make treatments safer and more effective, we need to start with a reformation in how we ask patients about pain."

Study Finds Limited Evidence to Support Use of Non-Opioid Drugs for Chronic Pain

By Pat Anson, PNN Editor

A new study by federal researchers has found limited evidence to support the use of non-opioid medications in treating chronic pain conditions such as fibromyalgia, neuropathy, rheumatoid arthritis and low back pain.

Only small improvements in pain and function were found in the use of anti-convulsants and non-steroidal anti-inflammatory drugs (NSAIDs), while moderate improvement was found in the use of some antidepressants.

Researchers noted that evidence was “too limited to draw conclusions” on long-term use of non-opioid drugs, and “no treatment achieved a large improvement in pain or function.” They also cautioned that “careful consideration of patient characteristics is needed in selecting nonopioid drug treatments” because of the risk of side effects.

The report was prepared for the Agency for Healthcare Research and Quality (AHRQ) by the Pacific Northwest Evidence-based Practice Center (EPC) at Oregon Health & Science University. The EPC has recently finalized two other studies on the use of opioids and nonpharmacological treatments for chronic pain.

Unlike their report on opioids, EPC researchers did not consult with technical experts and peer reviewers associated with Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group.

The researchers analyzed nearly 200 clinical studies and systematic reviews of non-opioid medication. Only 25 of the studies were rated as good quality and only 8 lasted a year or more. The pharamceutical industry funded 82 percent of them.

The EPC report is more cautious than other federal studies on the use of non-opioids such as pregabalin (Lyrica) and gabapentin (Neurontin).  Side effects from those drugs were often so severe that some patients stopped taking them and dropped out of clinical studies.

“Large increases in risk of adverse events were seen with pregabalin (blurred vision, cognitive effects, dizziness, peripheral edema, sedation, and weight gain), gabapentin (blurred vision, cognitive effects, sedation, weight gain), and cannabis (nausea, dizziness),” EPC researchers found. “Dose reductions reduced the risk of some adverse events with SNRI antidepressants. In the short term small increases in risk of major coronary events and moderate increases in serious gastrointestinal events (both short and long term) were found with NSAIDs.”

The EPC study is in marked contrast to the 2016 CDC opioid guideline, which recommends pregabalin, gabapentin and NSAIDs as alternatives to opioids with little to no mention of their side effects.

Other researchers have also warned that the effectiveness of gabapentin and pregabalin, which belong to a class of anti-convulsant drugs known as gabapentinoids, is often exaggerated in prescribing guidelines.

“Gabapentinoids have become frequent first-line alternatives in patients with chronic pain from whom opioids are being withheld or withdrawn, as well as in patients with acute pain who traditionally received short courses of low-dose opioid,” researchers at the University of South Carolina School of Medicine warned in a 2019 study.

“The evidence to support off-label gabapentinoid use for most painful clinical conditions is limited. For some conditions, no well-performed controlled trials exist.”

The EPC’s trio of studies on opioids, non-opioid drugs and non-pharmacological treatments are expected to help guide the CDC as it prepares an update and expansion of its 2016 opioid guideline, which is expected in late 2021. The update is likely to include new guidelines for treating short term, acute pain.  

How will CDC interpret the EPC findings on opioids and non-opioids? One outcome is suggested in the opioid study.

“Findings support the recommendation in the 2016 CDC guideline that opioids are not first-line therapy and to preferentially use nonopioid alternatives,” researchers said.

Long Term Risks of COVID-19

By Roger Chriss, PNN Columnist

The novel coronavirus SARS-CoV-2 is still mysterious. Although some people experience severe or even life-threatening illness, others only have a mild course and may even be asymptomatic. But emerging evidence is showing that recovery from Covid-19 may be more complicated and include long-term health consequences.

The CDC recently expanded its list of Covid-19 symptoms to include chills, repeated shaking with chills, muscle pain, headache, sore throat, and the loss of taste or smell. These symptoms generally start within five days of infection and may last for several weeks before resolution.

Long, Slow Recovery for Some

WebMD reports that for people with severe or critical cases “recovery can take up to six weeks.” Symptoms during that time can include severe fatigue and shortness of breath, making everyday activities like taking a walk or doing laundry a struggle.

Coronavirus patients who were hospitalized describe poor memory and extreme muscle weakness, often needing supplemental oxygen and physical assistance to perform basic daily tasks such as using a bathroom or getting dressed.

For people who require ICU care, recovery can take even longer. NPR reports that some COVID-19 survivors never recover completely and suffer from a condition known as post-intensive-care-unit syndrome, which can cause muscle wasting, organ damage, memory loss and post-traumatic stress syndrome.

"Unfortunately, oftentimes when they're coming off the ventilator, it's not the same person who went on the ventilator," one doctor explained.

All of this is exacerbated for people who are older and have preexisting health conditions. Recovery from any viral illness can be much harder for such people. One mathematical model predicts up to 94,000 Americans aged 65 and older who have hypertension, cardiovascular problems or lung disease could be hospitalized with Covid-19 from April to June, 2020.

Neurological and Cardiac Damage

As often happens with acute viral illness, there are long term consequences with Covid-19. Already there are reports of a link between the coronavirus and Guillain-Barré syndrome, a disorder involving rapid-onset muscle weakness caused by the immune system damaging the peripheral nervous system.

There are also concerns that Covid-19 may cause a wave of neurological illness. Gizmodo reports that on rare occasion, Covid-19 patients have developed brain swelling, strokes and seizures.

Researchers are scrambling to understand the effects of Covid-19 on the brain. Cases of the rare disorder necrotizing hemorrhagic encephalopathy have been reported, according to Wired. Some patients are experiencing loss of smell or taste, though why and for how long remains unclear. Anxiety, insomnia, and possibly even PTSD are being seen as well.

And there is emerging evidence that Covid-19 can also impact heart health. According to Kaiser Health News, a study found cardiac damage in as many as 1 in 5 patients, leading to heart failure and death even for those who have no respiratory problems.

It is clear at this point that Covid-19 is far more serious than a seasonal cold or flu. To date, the pandemic has led to over 55,000 deaths and nearly one million confirmed cases in the U.S.

Hospitals are trying to use artificial intelligence to predict patient outcomes, and researchers are struggling to better understand the full course of the illness. But there is a lot about the coronavirus that remains unknown.

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.

Prescriptions for Anti-Anxiety Meds Surge Due to Coronavirus

By Pat Anson, PNN Editor

After weeks of isolation and the uncertainty of dealing with the coronavirus outbreak, it’s no surprise that many Americans are feeling depressed, anxious and not sleeping well.

“The trauma of a loved one being in the ICU, alone and not knowing if you'll ever see them again is horrific. It also adds to personal health anxiety,” one patient told us in our recent survey on the coronavirus.

“This is an extremely scary time. My anxiety is through the roof for many reasons,” another patient said. “I’m extremely worried I won’t pull through this or my husband and daughter won’t pull through this if they contract the virus! We’ve already lost my aunt and best friend both to coronavirus. One was 34, the other 62.”

“I feel more depressed and find my anxiety level is up. I worry most about getting my medications,” said another. 

New research from pharmacy benefit manager Express Scripts shows the stress is having a significant impact on the nation’s mental health. 

From February 16 to March 15, the number of prescriptions filled in the U.S. for anti-anxiety medications rose by a third (34.1%), along with antidepressants (18.6%) and anti-insomnia drugs (14.8%).

More than three quarters (78%) of the prescriptions were new – meaning they weren’t refills.

“As COVID-19 began to significantly impact the U.S., we observed an increase in the use of prescription drugs that treat mental health conditions, particularly commonly used anti-anxiety medications known as benzodiazepines,” Express Script said in a new report called “America’s State of Mind.”

SOURCE: EXPRESS SCRIPTS

The increased use of benzodiazepines such as Xanax and Valium is striking, because the drugs had fallen out of favor in recent years in large part due to fears that they raise the risk of respiratory depression and overdose when used with opioids.

Prescriptions for anti-anxiety medication rose more for women (39.6%) than men (22.7%) between February 16 and March 15, according to Express Scripts.

Hydroxychloroquine Shortages

Some patients with rheumatoid arthritis, lupus and other autoimmune diseases say their stress levels are up because they worry about losing access hydroxychloroquine (Plaquenil), a drug repeatedly touted by President Trump as a possible treatment for COVID-19.

“I am currently on Plaquenil for lupus and having Trump declare it is the cure for COVID-19 has limited my access to my medication. I am worried there won’t be enough,” a patient said.  

“No chronic pain patient should have to sit and have the anxiety from concerns on being able to have access to medication needed to treat their illness,” a rheumatoid arthritis sufferer said. “I am in a horrible RA flare at this moment. I have no doubt that the stress of being concerned about getting my needed medication has helped to bring this flare on. I am really concerned about being able to get my much-needed hydroxychloroquine. There is no reasonable explanation for drug shortages in this country other than ignorance.” 

“I have been on hydroxychloroquine for five years for my autoimmune disease and had never had an issue getting the medication until the virus. In March, I had to check 3 different pharmacies before I found one that had any in stock,” another patient said. “My usual pharmacy said that not a single one of their local chains had it in stock and that they were back-ordered. The pharmacy that did have it, was only able to do a partial refill.” 

When she told her doctor what happened, he agreed to write a 3-month prescription for hydroxychloroquine to make sure she’d have an adequate supply. Her insurance company, however, refused to pay for more than a month’s supply. 

“Not only do I worry about running out of medication, but each time I have to go to the pharmacy for various medications, I am exposing myself to others which could cause me to get the virus. As someone who has a compromised immune system, I want to leave the house as little as possible to avoid exposure,” the patient said.

On Friday, the Food and Drug Administration warned against using hydroxychloroquine or chloroquine as a treatment for COVID-19 outside a hospital or clinical study because of “serious and potentially life-threatening heart rhythm problems.” Patients with heart and kidney disease are especially at risk.

The FDA said patients taking the drugs for approved reasons, including malaria and autoimmune conditions like lupus, should continue taking them as prescribed.

‘Sound Healing’ With Crystal Singing Bowls

By Madora Pennington, PNN Columnist

It’s 6 in the evening, on day 31 of "Safer at Home" quarantine in Los Angeles.

I am logging into a Zoom call for sound healing. The invite said:

“The great sleeping prophet Edgar Cayce noted "Sound will be the medicine of the future.” Well the future is now.

Share this link with anyone you know that is experiencing physical pain in the body. In about a half an hour that pain will be substantially reduced or eliminated. This works every time.”

The invite is from Jeff Klein, who uses "Crystal Singing Bowls" to make harmonic tones and vibrations. Jeff says his "sound therapy" helps people relax, rejuvenate and feel less pain. You can watch one of his singing bowl concerts below.

I am not in pain, but I am rather stressed out. And curious. Plus, I do love sound. Why not?

I get Zoomed in.

We have trouble getting started as our host, Jackie, isn’t close enough to the microphone and there is a strong background hum. No one can hear what she is saying, various attendees’ blast into their microphones.

Eventually Jackie figures it out and welcomes us. She’s the “surrogate,” the person Jeff will be working on, while about 30 of us watch and listen.

Jackie tells us to, “Sit into energy of gratitude and allow that into our system.”

I am not a spiritual person, but I do my best.

I have newspapers opened on the side of my screen I’d rather be reading. I am a news junkie. But Jackie convinces me to close my eyes and let go for now, and just be grateful.

This probably is a good idea.

“I am grateful,” Jackie says, with authority.

She encourages us to feel our breath, feel the warmth and experience openness.

Okay then, I can do this.

In comes Jeff, a portly man in his 60’s, who does live singing bowl concerts where he lives in Colorado, although not during coronavirus lockdown.

Jeff explains how his sound concert cured a woman’s hearing deficit, and how another man with neck pain had it permanently relieved from sound healing.

I am skeptical, but Jeff is ready to address this.

Jeff says placebos work because the heart and mind connect and healing occurs. Not a theory I had heard of.

“We are here to raise consciousness and vibration,” Jeff tells us. “Physical mental and emotional healing can happen, just like that,” as he snaps his fingers.

He instructs us to sit back, close our eyes, relax and be ready to receive.

Nothing I object to yet, except for his description of placebo effect.

And the sound quality. Zoom is not the best for a sound healing demonstration, with the chronic, scratchy, feedback audio. It’s so abrasive, I have to turn my volume down.

Jeff is fun to watch as he maneuvers the bowl like a master pastry chef. Swirling the rod around the rim to make sound, also swirling the bowl over Jackie’s body. I wish I were her right now. I’ll bet that feels good. At times, Jackie twitches on the table.

But I can multitask. Peeking out from behind my Zoom screen is the world map of coronavirus outbreaks from the New York Times. There’s a relaxation killer.

Jeff gets a bigger bowl, this one of stainless steel. I haven’t seen bowls like this before. Jeff has strong arms. Jackie twitches a lot with this one.

I stop watching. I let the sound play. It’s beautiful, layers of reverberations without a melody or structure. It makes it easy to let go.

I read about the failure of hydroxychloraquine on the side of my screen. Who didn’t see that coming? Then on to other headlines:

Italy’s poorer south suffers under lockdown, and fears a second blow from the virus.

The number facing acute hunger could double this year, the World Food Program says.

A port city in Ecuador has become an epicenter of the outbreak in Latin America.

Yet, I feel relief in my head and body from listening to these bowls, even over dreadful sound quality.

I must hunt down music like this on Sonos. I do a search for “Tibetan Singing Bowl.” Oh good, a playlist exists.

Then I remember: Don’t I own a Tibetan singing bowl myself? Got it in Santa Monica years ago. Oh yes, it’s in my living room. I should bang it daily. Since it has mercury in it (or is it lead?), I don’t like to touch it. It’s made of seven metals, some toxic.

I read all the news during the Zoom sound healing: The Los Angeles Times, New York Times and Washington Post. Yet, I feel relaxed. I was not in pain, but if I had been, I think I would feel better.

Managing pandemic anxiety has been a challenge. My technique has been to cognitively challenge distorted thoughts. I question what I am thinking and if it is valid, since it’s making me uneasy. At the end of quarantine, I think I will emerge a saner human. But this bowl stuff was really relaxing and requires way less effort.

When it ends, Jeff invites us to share. I want to tell him this was much better than I thought and I might attend again, but I’m not really a joiner.

Other participants chime in. They talk about the mystical (or are they hallucinatory?) experiences they had: tingling sensations, warmth, visions of light. They sound happy and relaxed, like I feel. I didn’t have those phenomena happen, but I wasn’t really trying.

I will definitely add this music to my day. I’m convinced this will help me get through the pandemic, and it has less calories than wine.

I have to think relaxing and letting go probably would help pain, at least temporarily. This is an easy way to do it.

More soothed than I have been in weeks, I’m hungry for the chicken and dumplings a friend made for us. I’ll steam some green beans, too.

Madora Pennington writes about Ehlers-Danlos Syndrome and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

Pain Patients Give Trump Poor Ratings for Handling of Coronavirus

By Pat Anson, PNN Editor

Is it time for the coronavirus lockdown to end? Should states, schools and non-essential businesses re-open? Like everything else in a sharply divided nation, the answers to those questions are often riven with politics, misinformation and distrust.

“The president is wrong about opening up our economy! Yes, it has to be done but it's way too soon, the active cases and deaths are steadily going up and he wants to throw people out into public? It's not the right time and he is fixing to kill a lot more people,” one person told us.

“They are in too big of a hurry to re-open everything and we will all suffer for that decision. My wife is an essential worker and I worry a great deal for her,” said another.

“I'm stunned how much of this country is not taking this seriously, from the top down. I am 59 years old, and extremely ill already from chronic Lyme and many co-infections. I am terrified of this virus because I am sure I will die from it,” one patient said.

Those are some of the responses we received from over 1,700 people in the United States to our coronavirus survey. The online survey was conducted April 6-20 by Pain News Network, the International Pain Foundation and the Chronic Pain Association of Canada from April 6-20. Over 2,200 people responded worldwide, the largest survey of its kind.

‘The Country is Overreacting’

All of the respondents indicated they have chronic pain or chronic illness. Many are also elderly and have compromised immune systems, which puts them at higher risk of severe symptoms and death if they become infected with COVID-19. Like many healthcare workers, many are still unable to get simple protective gear such as face masks.

If you think that would make everyone cautious about reopening the U.S. economy, you’d be wrong.

“The country is overreacting, and this is going to destroy this country financially and make it difficult to continue to get good healthcare if providers go bankrupt,” one person told us.

“People have to go back to work, life will be worse off if people lose their jobs,” said another.

“I think for the most part it is overblown and they are inflating the numbers on purpose. We should be opening businesses on a slow but steady basis, not based on the governors’ poll numbers,” another person said.

Asked how they would rate the U.S. federal government’s response to the coronavirus, over 55% rated it poor or very poor, while only 29% said it was good or very good.

How Would You Rate the U.S. Federal Government's Response to Coronavirus?

That dim assessment by U.S. residents is in marked contrast to how residents of other English speaking countries view their governments’ response to the pandemic.

Although the number of survey respondents in Canada (391), United Kingdom (51) and Australia (26) is far less than our U.S. sample — and not as meaningful statistically — they are much more likely to have a positive rating for their own governments. Canada’s response to the pandemic was rated good or very good by 55% of Canadians.

Governments Rated "Good" or "Very Good" for Coronavirus Response

State and Local Governments Rated Better

In contrast to the federal response, chronic pain patients in the U.S. have more favorable opinions about how their state and local governments are handling the pandemic. Nearly 48% said the response was good or very good, compared to 27% who rated it poor or very poor.

How Would Rate Your State or Local Governments' Response?

“It stuns me, the level of gross incompetence and general apathy of the federal government toward average Americans. Thank God for independent governors,” one person said.

“Trump and his administration have failed this country in every possible way. They wasted months of time they should have been preparing,” said another.

“The lack of preparation is disheartening! I know that these plans were available when this administration got into office and then all that went right out the window. This lead to many unnecessary deaths while they screamed it was nothing but a Democratic hoax,” wrote another patient.

“If our federal government was on top of this, we wouldn’t have as many people dying around the country. If we had Medicare for All, then we would have an adequate supply of PPE. My state governor did a good job of early lockdown, but the local response and local people did not,” said another.

“We have all been left to die of COVID-19 because the current administration refused to step up and behave like real leaders should. And I believe that many lives could have been saved had Trump done his job in the earlier months instead of lying about it and pretending it didn't exist,” another patient wrote.

“While bad, the media has once again blown it out of proportion. Another attempt to discredit our president. This year’s flu has killed more!” said a Trump supporter.

“Thank goodness Trump cut off flights to China when he did! Good job POTUS,” said another.

Conspiracy Theories

We didn’t ask people what they thought was the source of the virus, but many offered an opinion anyway. Some believe the coronavirus was engineered in a laboratory or is part of a larger conspiracy.

“The Wuhan Chinese worldwide pandemic is germ warfare started by China for economic reasons,” one patient said.

“I personally really believe that this pandemic was deliberately done by the government of China to bring the U.S., Canada, and other strategic countries down for a very easy takeover. I also believe that the Chinese already have the vaccine for this virus,” said another.

“I fear that this outbreak is being used as a way to destroy the American Constitution and Bill of Rights and allow the government to take over every aspect of our lives. I fear that people, in their terror, will allow the government to do anything it wants,” another patient warned.

“I strongly believe and feel that there is something much more sinister going on behind the scenes that is able to be carried out freely while everyone is shut/locked away in their homes,” warned another patient. “I just really believe that this is the absolute best scenario for them to setup extensive 5G systems networks. And there's got to be something else that they are planning for a new regime of control, greed and power over the world.”

“Conspiracy type stuff is intriguing but detrimental to my health. I've stopped exposing myself to it as well as to most news,” said another patient.

“I don't know what or who to believe!” was the opinion shared by several people.

And so it goes. Thanks to everyone who participated in our survey. If you’d like to see some of the other survey findings, click here. Stay safe and be kind to one another.

Chronic Pain Patients ‘Hanging on by a Thread’ During Coronavirus Lockdown

By Pat Anson, PNN Editor

People with chronic pain and chronic illness are staying at home, practicing social distancing and wearing masks to protect themselves from the coronavirus. But after weeks of isolation, many chronically ill patients are feeling anxious and lonely, and worried about issues that healthy people are less concerned about, like losing access to medication and healthcare.

“Some medications have been unavailable or on back order. Doctors have been unavailable; everything has been unavailable. I'm hanging on by a thread,” one patient told us.  

“It’s very difficult for a single, senior person living alone. Can go days without talking or seeing anyone. I suffer with depression anyway, but this has really increased it so much. It’s scary to think that people in this group could be sick or dead for days before being found. It’s incredibly lonely,” another person said.

“It has only exacerbated my anxiety and pain to a breaking point. I don’t know how long before I completely break down mentally,” said another.

“Not only do I worry about running out of medication, but each time I have to go to the pharmacy for various medications, I am exposing myself to others which could cause me to get the virus,” a patient said.

“I am amazed at how many people just blow off social distancing and even the seriousness of coronavirus itself,” another person said. “On the other hand, I've been heartened by the amazing compassion by others for those who cannot go out, are front line workers, and for those who have the virus.” 

Those are some of the responses we received in an online survey of 2,221 people with chronic pain or chronic illness conducted by Pain News Network, the International Pain Foundation and the Chronic Pain Association of Canada from April 6-20. The vast majority of respondents live in the United States or Canada.

Over half (58%) say they are extremely or very worried about the coronavirus, while less than 5% are not worried and believe the crisis is overblown.

The vast majority report they are self-isolating at home or under quarantine (89%), practicing social distancing (98%) and wearing protective gear like masks (73%).

There’s good reason for their caution. One in four are age 65 or older, and over half (57%) have been diagnosed with a weakened immune system. Both groups are at high risk for severe symptoms and death if they become infected with COVID-19.

HOW WORRIED ARE YOU ABOUT THE CORONAVIRUS?

“Severe untreated pain has demolished my immunity; it shows on a blood test. I'm bedridden in assisted living and I am severely immuno-compromised,” one patient told us. “I am supposed to have a biopsy, they think I have uterine cancer, but I won't get treatment because I can't have pain meds. Everyone in nursing homes is vulnerable.” 

“I’ve had COVID symptoms since March 16 and still unable to get tested. My greatest fear is whether or not it compromised my immune system even more, and that I might not be able to return to work part time when this is over,” another patient said. “Since I live alone, disability is not enough to cover my payments so I will be at risk for losing my home.”

“If I get this virus, it’s a death sentence. So I stay worried, my sleep is compromised, and my pain levels are higher,” said another.

What specifically are people worried about?  It runs the gamut from from financial problems to running out of food to not knowing when the crisis will end. Their top concern is a loved one catching the virus.

What Do You Worry About?

  • 71% A loved one becoming infected

  • 69% Going to a hospital or doctor’s office

  • 67% Catching the virus

  • 64% Not knowing when this will end

  • 62% Losing access to medications

  • 50% Not being able to see family and friends

  • 49% Not being able to see my doctor

  • 49% Visiting locations where I might become infected

  • 42% Mental health

  • 42% Running out of food or essential supplies

  • 37% Financial problems

One reason financial problems may rank low as a concern is that nearly 80 percent of respondents are retired, disabled or were no longer working. Their financial situation hasn’t changed much due to the lockdown. About 15% are still working, while only 5% have been furloughed or laid off.

‘Stuck at Home Without Pain Relief’

One of the biggest worries of respondents is having a health problem and needing to go to a hospital or doctor’s office, where they risk exposure to people who may be infected with COVID-19. As a result, over 70 percent say they have cancelled or postponed a medical appointment. About the same number are using telehealth to connect with their providers remotely.

Some patients are having problems getting their prescriptions refilled. And many healthcare services deemed non-essential, such as physical therapy, massage, chiropractic care and elective surgeries, have been cancelled.

“I am very upset to have had my shoulder surgery delayed again. I have already waited over 2 years and now this! My pain level is something terrible,” one patient told us.  

“I've lost non-pharmaceutical pain management; the essential physical therapies and procedures have been postponed. It is called ‘non-life saving’ but I've already lost my life due to disability from severe chronic immobilizing spinal nerve damage,” said another.

“Lupus medication Plaquenil is being used to treat Covid-19. A bit scary for those of us needing access to this medication daily for lupus,” said a patient, one of several with lupus who have that concern.

“I'm very worried about not being able to get ANY of my medications. Already last week, a non-pain related prescription wasn't available at my regular pharmacy. I had to go to another pharmacy to have it filled because my regular pharmacy doesn't know when they'd get the medicine again.”  

“My physician decided to stop prescribing my anxiety and muscle spasm medication now. I’m really having a terrible time functioning. My chiropractor will not see me as I had a fever at my last appointment,” a woman said. “I’m stuck at home without adequate pain relief and have a special needs daughter. None of my doctors understands my situation here and it’s beyond frustrating.”  

Testing and PPE

Another frustration is the lack of testing and shortages of protective gear such as face masks and gloves. Like many healthcare workers, nearly two-thirds (64%) of chronically ill patients say it is difficult or very difficult to get personal protective equipment, commonly known as PPE. And only about 3.5% of this highly vulnerable population has even been tested for the virus.

“Due to the fact that I have an autoimmune disorder, rheumatoid arthritis, I am trying especially hard to stay home,” said a patient. “There are no face masks, hand sanitizer or gloves available for sale in this area.”

“It is despicable to me that we do not have enough PPE and testing. We all knew there would be a pandemic, just a matter of when. From the feds down to local healthcare, that did not stockpile PPE or plan how they would do testing. It is a horrific failure of epic proportion,” another patient said.

Testing for coronavirus antibodies is less off a concern than PPE. A large majority (72%) don’t feel a need to be tested. Only about one in four are worried they may be infected (24%) and would like to take a test to confirm it (25%).

‘The Plague of Many Generations’

IS IT EASY OR DIFFICULT TO GET PPE?

Among our survey population, only 16 people say they’ve actually been diagnosed with COVID-19. It’s been a difficult, life-changing experience for those who have.

“I've been stigmatized on social media for being outside (no one was around) for having COVID-19. I've been shamed and treated like a leper,” said one coronavirus survivor.

“I had it in January before the news broke. My mom, who was very ill, got it and passed away from it. My dad and sister also had it and survived. I am on my second bout, which compared to the first is nothing,” said another survivor.

“I believe this virus has been here since December. My husband and both sons were very ill at Christmastime into January and I took ill in February,” said a woman who tested positive for COVID-19.

“It’s been absolutely terrorizing to experience such a thing! It’s difficult to understand how this could happen or where this virus came from. It’s the plague of many generations!” said another coronavirus survivor.

Tomorrow we’ll look at how people feel about the government’s handling of the coronavirus outbreak and whether now is a good time to start ending the lockdown.

Low Dose Naltrexone Saved Me from a Lifetime of Pain

By Madora Pennington, PNN Columnist

The first place I felt a ripping pain in my body was in my feet, when I was 14 and growing fast. But that’s only because I don’t remember the severe abdominal hernias I was born with. They probably felt the same. After I screamed for the first two months of life, a surgeon repaired them. I still have the scars.

In adolescence, very soon after my feet began to fail me, I was distracted by the snapping of my kneecaps. More trouble walking. Next came the low back aching. Carrying my schoolbooks and sitting in class became unbearable.

My merry-go-round of symptoms could have driven me mad, I suppose, but I was overtaken with such debilitating fatigue, I did not have the energy for big emotional reactions. My clique of junior high friends were agony, isolation and loneliness that I was too tired to accept or reject.

Then my abdomen herniated again. That pain was drowned out by everything else, to be repaired years later when surrounding tissue got caught in it, requiring an emergency operation.

In spite of exhaustive doctor visits throughout my life, no one gave a me a name for what was wrong with me until I was 33: Ehlers-Danlos Syndrome (EDS). Ah, so that’s what the other kids had that I lacked: stable collagen. My life began to make sense.

EDS was named for the doctors who first noted it in the medical literature. If it had been assigned a descriptive name, it would be called Contortionist Syndrome.

If I had joined the circus, my job would have been freaky back bender. My spine is impressively loose and a particular source of torture. I spent the last half of my 20’s begging for a guillotine to make the pain in my neck and head stop. No one obliged. Rib dislocations have been another problem. Is this what it feels like to get stabbed in prison? I am in prison in my body, so that would be consistent.

Before you feel too sorry for me, or recoil in horror that a human could be born so flimsy, note that my story has a happy ending. By the end of my 30’s, I got experimental treatment that made my body produce better collagen, strong enough to end my life of disability and begin a new one, functioning in the world.

Pain Changes the Brain

It was one thing to have a more stable body, but I still had a problem. Pain creates a disease state of its own. I had been in chronic pain for about 25 years.

Pain signals danger to the body: Do something because you are getting hurt! But what happens when the pain never stops or cannot be adequately relieved? The more a brain experiences pain, the better it gets at experiencing it. That is how brains are. They get good at what they practice.

Ongoing, unrelieved pain causes a downward spiral of maladaptive changes. Chronic pain triggers fatigue and depression. Sufferers tend to avoid activity, often quite legitimately, out of fear of injury or pain aggravation. Chronic pain also seems to induce troublesome changes in learning, memory, and body perception that are similar to emotional disorders. As pain changes the brain, sufferers are likely to feel less motivated and become less able to initiate or complete goals.

These brain changes are real. Researchers have noted widespread abnormalities in the brain, such as “grey matter density, in the connectivity of the white matter, as well as in glutamate, opioid and dopamine neurotransmission.”

How Naltrexone Works

One promising treatment for disrupting and rehabilitating the vicious cycle of chronic pain is an off-label use of an old drug: Naltrexone. Naltrexone treats opioid addiction by blocking the opioid receptors so drugs like heroin cannot take effect.

However, given at much smaller doses, naltrexone blocks the opioid receptors only slightly. This creates a stimulating, re-regulating effect The result: relief and even healing. Even better news, naltrexone is one of the safest drugs around.

How does low dose naltrexone (LDN) have such a profound effect? Opioid receptors are not just in the brain, they are spread throughout the body in the guts, blood, joints, skin and nerves. The hypothalamus and adrenal glands produce hormones with opioid-like effects, creating a complex hormonal feedback system that governs everything from immunity, pleasure and pain, to how connected we feel to others. Naltrexone in low doses gently interrupts these inter-body communications, which can cause a cascade of healing.

Dr. Linda Bluestein is a pain doctor at Wisconsin Integrative Pain Specialists and host of the Bendy Bodies podcast. She often prescribes low dose naltrexone for her chronic pain patients.

“LDN acts on microglial cells and is a novel CNS anti-inflammatory agent,” says Dr. Bluestein, adding that LDN works well not only on persistent pain (fibromyalgia, complex regional pain syndrome, migraine, irritable bowel syndrome, etc.), but also for autoimmune diseases, inflammatory conditions, neuropathic pain, chronic fatigue syndrome and myalgic encephalomyelitis.

“Results are very positive. Many patients get outstanding pain relief. The remainder get moderate pain relief,” said Bluestein. “Some don't really observe much pain relief but want to continue taking the medication because the incidence of infections is lowered. This is because naltrexone given in low doses (1.5 to 4.5 mg) can act as an immunomodulator benefiting both autoimmune diseases and immune function.”

As for side-effects, Dr. Bluestein notes that a patient must be off opioids to take LDN.

“The most common side-effect is vivid dreams. Occasionally a patient will have GI issues, abdominal pain, or even more rarely, loose stools. Cost is sometimes a barrier as insurance rarely covers LDN. Access is another occasional barrier as it must be obtained from a compounding pharmacy,” she explained.

Back to my story, my life of pain interrupted. I have been taking low dose naltrexone for years now. In spite of healthier connective tissue, pain had ravaged me. LDN went far to undo that. Results took time, but were well worth the wait. I would say LDN gave me my personality back, which chronic pain (and also long-term opioids) had altered.

As someone with Ehlers-Danlos, my body is overly-sensitive and overly-perceptive. Activity that is moderate, normal, and completely safe can cause alarm bells of injury and trauma to my brain, even though I am not actually injured.

Why this happens with EDS is not understood, but in my experience, LDN keeps this phenomena from becoming a downward spiral of more pain, depression, fatigue and dysfunction.

Madora Pennington writes about Ehlers-Danlos and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.