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.

Does Chronic Pain Affect Memory?

By Ann Marie Gaudon, PNN Columnist

Pain is a complex experience. It not only affects us biologically, but we also experience it cognitively and emotionally. Does it affect our memory? You bet it does.

Chronic pain patients often complain of memory problems and there are numerous studies which confirm these challenges are indeed a reality.

Twenty-four studies evaluating working memory (WM) and/or long-term memory (LTM) in chronic pain groups and control groups were reviewed last year by French researchers. WM was defined as the processing and manipulation of information within a short period of time (a few seconds), while LTM involved the “storage” of knowledge and memories over a long period of time.

Concentration and memory deficits on a daily basis were the most frequently reported cognitive difficulties. Memory complaints included forgetfulness and problems performing everyday tasks and conversations.

Emotional distress common to pain patients, such as depression, anxiety and rumination (the inability to divert attention away from pain), was also found to play an important role in memory difficulties.

One study compared two groups of pain patients who had minor or major memory complaints. Between the two, no significant differences were found with regard to age, gender, education level, marital status, medication use, long-term pain or pain intensity.

However, patients in the major memory complaint group suffered from emotional distress to a significantly greater degree. They also reported a lack of family support and discontent with their social and sexual lives. These were noted as additional daily sources of suffering for this group.

Adding to potential negative effects on memory were comorbidities which many pain syndromes share. Conditions such as depression, anxiety, sleep disturbances, and chronic fatigue could alone or combined affect memory. A major concern expressed was the need to disentangle pain-related cognitive effects from those resulting from these comorbidities.

Medications and Memory

The review really became interesting when it came to medication, because researchers found contradictory results. One European study reported that opioids exerted a negative effect on working memory -- finding a clear association between higher levels of analgesics and perceived memory dysfunction in chronic back pain patients. Some studies confirmed that medication can have a negative effect on memory, but others showed improvements in memory following analgesic treatment. That suggests that effective pain relief may also reverse pain-induced memory impairment.

The researchers concluded it was unclear whether analgesic medications are beneficial or detrimental, because both scenarios were reported.

Age was also identified as an important factor in the relationship between chronic pain and memory, but not in the way you may think. Surprisingly, it was shown that an increase in age did not additionally affect memory performance.

One study reported that gender and age significantly affected memory decline in those suffering from chronic migraine headaches. Cognitive decline in migraineurs was greater among younger individuals, and females showed greater decline during headache intervals than males. It was acknowledged that gender as a factor in pain-related experience is poorly investigated.

Like all reviews, this one has its limitations. There was a “large heterogeneity” of tests within the 24 studies. This diversity of tests did not allow for a suggestion of which memory processes were altered by chronic pain itself. The study populations were also heterogeneous regarding pain etiologies and an assessment of the intensity of pain was not performed.

Studies which included a mix of chronic pain disorders did not provide data on whether specific memory impairments were more frequently observed in specific disorders. The authors suggest there is a need for comparative studies across pain-related disorders in order to determine whether impairments are pain-related or a consequence of other pathophysiological features.

These numerous studies confirmed the memory decline that is often reported by chronic pain patients. Even if these effects are mild, the impact on quality of life could be substantial as they may indeed worsen suffering including depression, anxiety, and limitations on activity.

Researchers suggested that examining memory function should be part of the clinical assessment of chronic pain patients. The spectrum of cognitive difficulties must become acknowledged and understood in order to find ways to overcome them.

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

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

How to Fight Step Therapy

By Barby Ingle, Columnist

With opioid medication becoming harder and harder to obtain, I want to put out some reminders of other access to care issues that we have had for many years. These challenges can’t be overlooked as we combat the fake news media on the opioid crisis and the lack of news coverage of the chronic pain epidemic.

Health insurance companies often find ways to delay or deny pain care, using step therapy, prior authorization, medication claw back, and poorly run clinical trials to keep their own costs down.

Step therapy is a tool that insurers use to control spending by requiring patients to try certain medications first before using more expensive drugs to treat whatever ails them. These “fail first” requirements mostly affect the care of chronically ill patients. Studies show that nearly 60% of commercial insurance companies use some form of step therapy. And three out of four large companies offer employees insurance plans that use step therapy practices.

Requiring patients to try less effective medication delays access to the best treatment and allows some diseases to progress. This lack of proper and timely care denies patients the drugs they need when they need them, and allows insurance companies to practice medicine without a license.

Many patients can’t afford to wait or forgo needed medications. As these patients physically deteriorate, it only adds to future healthcare costs and increases the risk of non-compliance and self-medication.

Currently there are laws protecting patients from step therapy in over a dozen states, including California, Connecticut, Iowa, Illinois, Indiana, Kentucky, Louisiana, Maryland, Missouri, Mississippi, New York, Washington and West Virginia. But even in these states, there are often holes in the law that need to be addressed. In California, for example, the law only relates to fail first exceptions and uniform prior authorization forms.

Various groups such as the New Mexico Fail First Awareness Coalition, Minnesota Coalition on Step Therapy, Illinois Pain Alliance, Indiana Pain Alliance, International Pain Foundation, Kansas Affordable Access to Medication Coalition and others are working on pending legislation to stop step therapy practices in Florida, Georgia, Massachusetts, Maine, Minnesota, New Mexico, Ohio, Oregon, Rhode Island, Texas, Utah and Virginia.

There is also a step therapy bill in Congress sponsored by Rep. Brad Wenstrup of Ohio called the “Restoring the Patient’s Voice Act of 2017.” It requires insurers to have a clear and speedy process for patients to request an exception to the step therapy protocol.  In cases where the life and health of a patient are jeopardized by step therapy, the request must be granted no later than 24 hours after it is received.

For all of these state and federal efforts, the pain community needs patients to share their stories of how insurance practices have harmed them or denied them medication that is helpful.

What can you do? If you have already experienced step therapy and found it delayed your care, I suggest you speak out about the impact it has had on you. Talk to your congressional representatives and let them know how it has affected you.

An easy way to do this advocacy work is to call 1-844-872-0234 and wait for the automated message. Press 1 and enter your 5-digit zip-code. This will connect you to the office of a U.S. senator for your state. After the call concludes, it will automatically connect you to your other senator and then your representative in the House. Sometimes a live person will answer or you could be instructed to leave a message.

Craft a personalized message, such as “Good morning. My name is (name), and I am a constituent from (city, state). I am a chronic pain (patient, caregiver, family member or provider). I am asking for your support to help the pain community by supporting step therapy legislation for people in pain living in our state. Thank you.”

It is a simple way to become an advocate and make a difference. I hope that you will find it in you to be a cheerleader of hope, and fight for access to proper and timely care for yourself and others in the pain community.

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

More information about Barby can be found at her website. 

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

How the DEA Changed the Overdose Numbers

By Pat Anson, Editor

The Drug Enforcement Administration has released its annual report on the threat posed to the U.S. by drug trafficking and the abuse of illicit drugs.

The 2017 National Drug Threat Assessment (NDTA) has both good and bad news about the nation’s worsening overdose crisis. But like other federal agencies, the DEA has a disturbing tendency to massage statistics to make the role of opioid pain medication more significant than it actually is.

“The threat posed by controlled prescription drug (CPD) abuse is prevalent. Every year since 2001, CPDs, specifically opioid analgesics have been linked to the largest number of overdose deaths of any illicit drug class, outpacing those for cocaine and heroin combined,” the report declares.

That sure makes it sound like opioid pain medication is killing more people than ever before, doesn’t it? A closer look at the numbers and methodology used by the DEA suggests otherwise.

"Controlled prescription drugs" is a very broad category that includes not only opioid pain relievers, but anti-anxiety drugs (Valium, Xanax), stimulants (Adderall, Ritalin), and anabolic steroids. And there's plenty of evidence people are dying from those drugs as well.

This is not the first time the DEA has lumped opioid pain relievers with other drugs. In the 2016 NDTA, the DEA combined opioids with anti-anxiety drugs, but not stimulants or steroids.

A year earlier, in the 2015 NDTA, prescription opioids were in a category all to themselves.

The effect of these changing and broadening definitions is significant. Every year the overdose crisis appears to be getting worse and worse. It certainly is for deaths linked to illicit drugs like heroin, cocaine and fentanyl, but not necessarily for prescription drugs and definitely not for opioid pain medication.

One has to wonder why these definitions keep changing and distorting the true nature of the overdose crisis. Don’t take my word for it. Look at how the overdose numbers for "Selected Illicit Drugs" in 2013 have grown over the years.

In the 2015 NDTA, the DEA reported that an “opioid analgesic” was involved in the deaths of 16,235 Americans in 2013.

In the 2016 NDTA, the DEA reported that “prescription drugs” were involved in the deaths of 22,767 Americans in 2013.

And in the 2017 NTDA, the DEA reported that “medications” were involved in the deaths of 24,536 Americans in 2013. The "medications" category includes not only controlled prescription drugs, but over-the-counter drugs as well.

Simply by changing the way they counted overdoses, the DEA and other federal agencies raised the death toll for 2013 by over 8,300 people.  We’re only using 2013 as an example.  From one report to the next, overdoses grew for every other year as well.

This isn’t the first time the federal government has played around with the overdose numbers. As PNN reported, last December the CDC and the White House Office of National Drug Control Policy released three different estimates of how many Americans died in 2015 from overdoses linked to prescription opioids.  

Within one week, the overdose numbers evolved from 17,536 deaths, down to 12,700, and then back up to 15,281 deaths. To use a football metaphor, that is known as moving the goalposts.

Pain Medication Abuse Declining

A closer reading of the 2017 NDTA shows that heroin, illicit fentanyl and other illegal drugs are now driving the overdose crisis, not opioid pain medication. Less than one percent of legally prescribed opioids are being diverted to the black market. 

A recent survey of law enforcement agencies, known as the National Drug Threat Survey, found that less than 10 percent of respondents nationwide believed controlled prescription drugs were the greatest drug threat in their jurisdiction -- down considerably from 2014 when over 21.5 percent reported the same

The abuse of prescription opioids is also declining. Fewer Americans are testing positive for hydrocodone, oxycodone and other painkillers in workplace drug tests. And the number of people seeking treatment for abusing pain medication has fallen significantly. From 2011 to 2014, admissions to publicly-funded treatment facilities for prescription opioid abuse fell by nearly a third. 

“This decline can in part be attributed to CPD (controlled prescription drugs) abusers switching to heroin or other illicit opioids. Some CPD abusers, when unable to obtain or afford CPDs, begin using heroin as a cheaper alternative offering similar opioid-like effects,” said the DEA.

“Expansion of the counterfeit pill market, to include pills containing fentanyl, threatens to circumvent efforts by law enforcement and public health officials to reduce the abuse of opioid medications; the arrival of large amounts of counterfeit prescription drugs containing fentanyl on the market replaces opioid medications taken off of the street.”

Curiously, the DEA report doesn’t even list kratom as a drug threat – even though the agency considers the herbal supplement a “drug of concern” and tried to ban it last year. 

“I think that all of us in the kratom community have a hard time reconciling the lack of a threat listing for kratom and yet still being considered a drug of concern,” said Dave Herman, chairman of the American Kratom Association, a pro-kratom consumer group.  “The science tells us that kratom has a low potential for either abuse or addiction and we hope to see that reflected in all DEA materials.”

Whether its kratom or pain medication, the DEA and other federal agencies have a responsibility to be consistent and to get their facts right.  Inflating the overdose numbers and blaming opioid medication may make for good headlines, but it diverts funding, resources and policymakers away from other drug problems that truly need more attention. We'll never get a handle on the overdose crisis if we keep moving the goalposts.

A recent editorial in the Journal of Pain Research took the CDC to task for doing just that.

"Transparency, freedom from bias, and accountability are, in principle, hallmarks of taxpayer-funded institutions. Unfortunately, it seems that at least one institution, the Centers for Disease Control and Prevention, continues to struggle with all three," wrote researchers Michael Schatman, PhD, and Stephen Ziegler, PhD.

"What began with a prescribing guideline created in secrecy has now evolved to the use of statistical data and public statements that fail to capture not only the complexity of the problem but also the distinction between licit and illicit opioids and their relationship to the alarming increase in unintentional overdose. This is unfortunately consistent with Mark Twain’s assertion that 'there are lies, there are damn lies, and then there are statistics.'"

Tips for Managing Your Meds

By Barby Ingle, Columnist

When it comes to managing medication, the more you know about your medical condition the better equipped you’ll be to understand which drugs to take, the side effects to watch for, and when to take them. It is also a great idea for your caregiver to know.

There are many times when I am not doing well and my husband will say, “You seem dizzy. Have you taken XXX yet? When was the last time you took it?”

Or he’ll say, “We are going to go out later to get groceries, so take your pill now so you won’t be sleepy when we go and you will be more comfortable.”

Having someone there to help me is great, because sometimes I feel so awful that I cannot remember to take my medication or even what I have taken. I have overdosed on different medications a few times because I forgot I had already taken a dose.

Here are some tips I’ve learned to manage my medications safely:

1)  Use a pill organizer to keep track of your medications. I have a pill box for a two week supply separated into morning and night pills.

2)  Keep medications without childproof caps away from children or lock them up, especially if you have opioid pain medications.

3)  Take your pills at the same time each day, especially when medications are time-released versions. This helps to keep the level of medication consistent in your body.

4)  Know why you are taking each medication, how best to take them (before or after eating), and any side effects that you may experience. Find out what your doctor wants you to do for each medication and verify it with your pharmacist.

5)  Be sure to never break or split time-release pills. Breaking the seal can be very dangerous as your body can receive the dose of the whole pill too quickly and it can become deadly.

6)  Carry a list of your medications and doses at all times in your purse or wallet. You should also update your pharmacy records to include all of the drugs that you take, including any over-the-counter medications. I use Walgreen's and they have a great online site that allows me to update it from home.

7)  Do not drive under the influence of medication that affects your cognitive thinking. It is also a good idea not to drive while taking medications that cause drowsiness or when you are distracted by pain.

8)  If a medication is making you sick or causing side effects that you cannot tolerate, talk to your physician about adjusting the dose or changing the medication. If side effects include trouble breathing, a rash or more severe symptoms, head to a local emergency room for immediate assistance.

9)  Read prescription labels and inserts carefully. They contain important information such as the medication’s name, dosage, prescribing doctor, and expiration dates. This can help you avoid taking a medication for too long or having adverse effects from long-term use.

10)  If you are a drinker, be sure to discuss with your provider or pharmacist if it is safe to drink with any of the prescriptions or over-the-counter medications you are taking.

11)  If you have more than one doctor prescribing medications, be sure to tell all of them what you are taking, so they can be alert to possible interactions and complications. I had to do this for myself and have not had these issues since.

12)  If you decide you no longer want to continue a medication, get your provider’s guidance before you stop taking it. Some medications can be stopped immediately, but many require you to titrate or taper off them.

13)  If you discontinue a medication, be sure to dispose of it properly and immediately. You should also dispose of medication once the expiration date has passed. The FDA has a list of disposal recommendations you can see by clicking here.

Some medications such as inhalants have hazardous material disposal requirements. Follow the specific disposal instructions on the drug label. If no instructions are given, you can crush and mix medications with coffee grounds, cat litter, or food scraps. Then seal them in a bag or a container (such as a margarine tub or jar) and discard them in the regular trash.

Many pharmacies and law enforcement agencies have “Drug Take Back” events that you can participate in. Find out more from your local pharmacist or police station.

Following these tips will keep you, your loved ones and your community safer.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

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