Where Is the Hurry to Help People With Chronic Pain?

By Carol Levy, PNN Columnist

Why is the United States and the rest of the world in such a hurry to get a vaccine against Covid-19?

Easy to answer: The virus is a killer. As of the writing of this column, the number of American deaths stands at over 237,000 and is rising daily. The number of infected is nearing 10 million. The effect on the economy has been tremendous. The use of medical resources is stretching a fragile system even thinner.

Why aren’t we in such a hurry to develop new treatments and drugs -- specifically non-opioid medications -- for chronic pain?

Hard to answer, given the similarities. Chronic pain is a killer. Some studies have shown that those who live with moderate to severe chronic pain have higher mortality rates than those who do not have painful disorders. Studies have also shown we have higher rates of suicide.

The economic costs of chronic pain in the U.S. are enormous. In 2010, estimates of lost productivity due to pain ranged from $299 to $335 billion. The total cost to the country was estimated to be up to $635 billion, more than the annual costs of heart disease, cancer and diabetes.

Treating chronic pain is also a burden on the health care system. Pain is one of the main reasons for medical appointments. We are often bounced from specialist to specialist to specialist – who often have difficulty diagnosing us or don’t want to be bothered treating us, especially in the face of the “opioid crisis.” The stress of untreated pain often leads to other health issues and diseases, which result in the use of even more medical resources.

Covid is contagious. That makes it more dangerous than chronic pain.

But it seems pain patients are also viewed as contagious. We’re often blamed as the major cause of the opioid epidemic. We allegedly abuse our prescribed opioids or give or sell them to others. We are so careless that others steal them from us. We are the “superspreaders.”

If Covid requires a quick answer due to its deadliness and economic and societal costs, then so too does the epidemic of chronic pain.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.”

Study Shows Cannabis Oil Improves Fibromyalgia Symptoms

By Pat Anson, PNN Editor

A small placebo-controlled trial shows that daily doses of cannabis oil rich in THC (tetrahydrocannabinol) significantly improves pain, fatigue and quality of life in people with fibromyalgia.

The study findings, recently published in the journal Pain Medicine, involved 17 women with fibromyalgia living in Florianopolis, Brazil. Participants were given drops of cannabis oil or a placebo for eight weeks, starting with an initial dose of one drop a day orally and then titrating to an average of 3-4 drops a day.

The cannabis oil used in the study contained 1.22 mg of THC and 0.02 mg of CBD (cannabidiol) per drop. THC is the psychoactive ingredient in marijuana.

The women self-reported their symptoms on a questionnaire every 10 days. Few changes were noted in the placebo group, but the women receiving cannabis oil reported significant improvement on a wide range of symptoms, including pain, depression, anxiety and fatigue. They were also more likely to “feel good” and not miss work compared to the placebo group.

“To our knowledge, this is the first randomized controlled trial to demonstrate the benefit of cannabis oil -- a THC-rich whole plant extract -- on symptoms and on quality of life of people with fibromyalgia,” researchers said. “During the intervention, the impact of the intervention on quality of life in the cannabis group participants was evident, resulting in reports of well-being and more energy for activities of daily living. Pain attacks were also reduced, albeit subjectively, in frequency and intensity.”

The researchers concluded that cannabinoids can be a low-cost and well-tolerated therapy for fibromyalgia patients, and recommended that it be included as an herbal medicine option in Brazil’s public health system.

“The demonstration of safety and efficacy in this gold-standard model is significant. Millions of Americans suffer with FM (fibromyalgia) – a condition that tends to be poorly controlled by standard medicines. These clinical findings indicate that for many of these patients, plant-derived cannabis preparations may be a safe and effective alternative,” said Paul Armentano, Deputy Director of NORML, a pro-marijuana advocacy group.

A major weakness of the Brazilian study is its small size. Participants also continued to self-medicate with analgesics and anti-inflammatory medications during the study, which could have affected the findings.

A larger 2019 study in Israel also found that cannabis reduces pain and improves quality of life for fibromyalgia patients. The cannabis used in that study was ingested by tincture, oil or vaporizer.

How to Appeal a Denied Health Insurance Claim

By Barby Ingle, PNN columnist

Most pain patients rely on their healthcare providers to appeal insurance company denial of care decisions for them. Some providers are now charging fees to do the appeal paperwork for a patient.

I have found that when I handled the appeal myself, I am often able to get coverage for what I needed and in a timelier manner. I get that this is a daunting process. Many insurers seem to deny coverage and then wait for the appeal. Only about 20% of us follow through on the appeals for a variety of reasons. But it can be done.

At the end of this article is a sample of the letter I send to my insurance company when I run into a situation where the prior authorization has either taken too long (more than a few days) or has been denied.

I start by including copies of my medical records that pertain to why I need a procedure, durable medical equipment or medication. I have kept all of my medical records going back to 2002 in 3-inch binders. I now have 10 binders full, and have them organized by provider and date of service. Keeping good medical records is key to filing an appeal, so you don’t have to start from scratch.  

It can be very helpful if you also attach 3-5 clinical studies that show the effectiveness of what you are requesting working for others with your condition. Try to use studies completed within the past 5 years and with an N of at least 500 (number of participants). Two places where you can look up studies are ClinicalTrials.gov and MediFind.

I know that finding a study can be quite tough for those with ultra-rare and rare medical conditions. If you fall into that category, mention in your letter that the treatment may still be worth a shot and save you from future medical bills and procedures – and help the insurance company as well.

Here’s a sample letter to use when appealing:

Date

Name

Insurance Company Name

Address

City, State ZIP

Re: Patient's Name, Type of Coverage, Group number/Policy number

Dear (contact person at insurance company),

Please accept this letter as my appeal to (insurer’s name) decision to deny coverage for (state the name of the specific procedure denied). It is my understanding based on your letter of denial dated (insert date) that this procedure has been denied because:

(Quote the specific reason for the denial stated in denial letter)

I was diagnosed with (disease) on (date). Currently Dr. (name) believes that I will significantly benefit from (state procedure name). Please see the enclosed letter from Dr. (name) that discusses my medical history in more detail.

I believe that I am attaching additional information that you did not have at the time of your initial review. I have also included with this letter, a letter from Dr. (name) from (name of treating facility). Dr. (name) is a specialist in (name of specialty). (His/her) letter discusses the procedure in more detail. Also included are additional medical records and several journal articles explaining the procedure and the expected results.

Based on this information, I am asking that you reconsider your previous decision and allow coverage for the procedure Dr. (name) outlines in his letter. The treatment is scheduled to begin on (date). Should you require additional information, please do not hesitate to contact me at (phone number). I look forward to hearing from you in the near future.

Sincerely,

Your name

I want you to have more concrete chances to get the care you need covered. I know that it will take work and won’t always be easy. It will take energy, which most of us already have challenges with.

I like to think about my future when I am in the middle of the appeal process. What would getting this insurance coverage mean to me? More life? A better life? Then it is worth it for me.  

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.  

Scanxiety: My Fear of Cancer Recurrence

By Cynthia Toussaint, PNN Columnist

Several months back, For Grace’s conference planning committee invited our webcaster, Rich, to join the call to talk logistics about our upcoming virtual “Pain-Cancer Connection” event. Rich is a long-time cancer survivor who’s dealt with decades of chronic pain as a result of his aggressive treatment.

It soothed me to talk with him because I was in the midst of brutal chemotherapy. I could relate when Rich shared his nightmare of getting one infusion too many and lying on the floor weeping after losing much of this tongue. I also understood Rich bungie jumping off a Las Vegas building after his treatment in a quest to find something scarier than chemo.

But that ease turned to discomfort when Rich warned me, “Oh Cynthia, you don’t know yet. There’s so much anxiety that comes with cancer.”

While I’ve long been aware that if triple-negative breast cancer returns, it tends to do so more aggressively in the first year or two, Rich was my introduction to “scanxiety.” We cancer survivors live in often paralyzing fear of a recurrence, one that will likely end us. In fact, I was recently stunned to hear a breast cancer survivor speak publicly of her relief when the cancer returned. She preferred to battle the disease again rather than the anxiety.

Now after sweating bullets through my first post-remission imaging, I can’t help but wonder how much scanxiety is reinforced by our broken healthcare system’s reliance on an endless stream of patients whose wellness would pose a threat to their business model.

I’ve said it before and I’ll say it again: the cancer industry thrives on a culture of fear, intentional or not. I’m certain that’s why patients gratefully say “yes” to every treatment offered without blinking. And that’s why I was looked at like I had two heads when I questioned every proposed therapy, relied on my own research, did everything integratively and said “no” to most of my provider’s drugs, scans and (over) treatments.

Sadly, my scanxiety began the moment I attained remission. My oncology surgeon -- who’s still terrified because I didn’t go with her standard-of-care surgery, even though studies support that as a complete responder I had a better chance at surviving without it – told me to do twice weekly breast exams. She then attempted to comfort me by assuring we’d do surgery after the cancer grew back. Those hyper-vigilant exams made me so tender my coordinating nurse told me to back off.

As my initial every-three-month imaging neared, scanxiety reared its ugly head and seriously messed with my health. I stopped sleeping restoratively and was plagued by nightmares. Obsessing on the worst outcome, I started getting severe headaches while my IBS went through the roof.

My terror went into hyper-drive when I found an inflamed lymph node in my neck, the same side as my former tumor. This fright didn’t just infect the patient.  John developed body-wide hives that looked like eczema on steroids, and my close girlfriends felt like they were having nervous breakdowns.

After my breast scan was clean, I rejoiced with John about how we deliberately made all the right choices. My surgeon broke up the party when she entered the examining room voicing her concern about my neck lymph node. Due to its location being a few inches higher than my breast area and healthcare being its dysfunctional self (every department can only scan a small area of the body), I had to wait another WEEK to find out if the cancer had metastasized.

During that soul-rattling scan the imaging technician said the node was abnormal and that I’d hear from my doctor soon. While John wheeled me to the car, I lost my shit and began screaming in the parking garage. I knew “abnormal” meant I was going to die and that six grueling months of chemotherapy hadn’t helped me in the least. How could I have been so wrong?!

I continued screaming in the car until my screamer gave out, while my stomach knotted and head throbbed. Mercifully, my doctor’s call late the next day told me all was clear. That both relieved and angered me; relief because I was assured another three months on the planet, but deeply pissed off because this healthcare-induced trauma was majorly messing with my cancer-fighting terrain. I make it my priority to practice healthy life-style choices to keep my body and mind well and in harmony.

Toxic Medicine

But the body keeps the score. After that last scan, I got a chemo-induced bladder infection from hell, one that’s still knocking me out despite a week on Cipro. With this infection that appears to be moving into my kidneys, multiple chemo side effects have re-roosted; fatigue, heavy heart throbbing, tinnitus and labored breathing. I find myself in the midst of my most recent outcome of fear-based medicine, and I remain snared in their illness-inducing, money making system.    

Deeper reflection leads me to believe that even my “innocuous” port flushes are part of this web of toxic medicine. Every seven weeks (though they push for four), I visit the infusion center where the nurses honestly seem put off, even hostile, that I’m doing well, smiling and in good spirits.

Apparently my role is to be fearful, inferior and vulnerable, and my upbeat, empowered demeanor rattles them. Rather than celebrating winning my life back or chiming in about simple pleasures like fashion and hair color, they drill me about how my post-treatment is going (what post-treatment?!) and what horrors my next scan might bring. My medical oncologist there is so buried in the fear culture, I schedule my appointments to avoid him.

Breathe.

Thankfully, I saw my saint of an integrative doctor last week who set me straight. Dr. Taw was visibly disturbed when I shared my run-ins with these healthcare providers, and was concerned that their behavior might stir things up and create cancer sparking “stagnation” in my body. Several times, he gave me his full support to stay away from these toxic people as much as possible to hold wellness. I couldn’t agree more.

Still, I am wary of my next scan. Despite every logical indicator telling me I’ll likely be A-ok, these people and their diet of fear embed me with dread. I see more than ever that this doesn’t just apply to my last year plus of cancer care; it also applies to my 38-year wrangling with high-impact pain. These western medicine devotees, while they claim to be healers, are the polar opposite for me. And their negative energy creates illness, rather than mitigating it.

Let’s not have to take a bungie jump off a building to overcome our latest medically-induced trauma. I implore you to stay away from these healthcare providers and their dysfunctional, money-based system as much as possible. To be fair, they do some good – but by a long measure, they hurt us beyond repair, again and again.  And again.

Please seek out integrative healing that is non-invasive and wellness (rather than fear) based. Your body and mind will thank you.  

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

One in Five U.S. Adults Have Chronic Pain

By Pat Anson, PNN Editor

Female, white and older Americans are more likely to have physical pain that limits their daily activities, according to a new CDC analysis that estimates about one in five adults have chronic pain.

The study, based on the 2019 National Health Interview Survey (NHIS), adds further insight into the demographic characteristics of chronic pain, a health condition that is more common than diabetes, heart disease and cancer combined.

The survey found that 20.4% of American adults had chronic pain “every day” or “most days” in the previous three months. Of those, a little over a third said they had pain that limited their life or work activities – what the CDC calls “high-impact” chronic pain.  Women (8.5%) were more likely than men (6.3%) to report this kind of high-impact pain.

The likelihood of having chronic pain varied considerably by age, race and whether Americans live in a rural or urban area. For example, only 8.5% of younger adults reported have chronic pain, compared to 30.8% of Americans aged 65 and over.

2019 NHIS SURVEY

The survey found that whites (23.6%) were significantly more likely to have chronic pain compared to Black (19.3%), Hispanic (13.0%), and Asian (6.8%) adults.

Living in rural areas also raised the likelihood of having chronic pain. Over 28% of Americans living in rural areas said they had chronic pain, compared to 16.4% of those living in big cities.

A previous NHIS survey also estimated that 20.4% of Americans adults – about 50 million people -- have chronic pain. Of those, 20 million have high impact chronic pain.

Due to the multidimensional nature of pain and different definitions of its severity and prevalence, estimates can vary widely.  In 2011, the Institute of Medicine released a landmark report claiming at least 116 million Americans have chronic pain.

A recent study warned that middle-aged Americans are experiencing more pain than the elderly, a surprising shift in pain demographics. Researchers at Princeton University and the University of Southern California say acute and chronic pain is rising in working class and less-educated Americans under the age of 60. The findings run counter to long held assumptions that the elderly are more likely to feel pain due to arthritis and other conditions associated with old age.

“This is the mystery of American pain,” researchers reported in the Proceedings of the National Academy of Sciences (PNAS). “If these patterns continue, pain prevalence will continue to increase for adults; importantly, tomorrow’s elderly will be sicker than today’s elderly, with potentially serious implications for healthcare.”

I Deserve To Have My Chronic Pain Managed

By Marguerite Morgan, Guest Columnist

I have lived with chronic pain the majority of my 53 years of life. It’s hard to make the people that cross my path understand that I cannot do things I used to take for granted. Things like attending concerts and other venues, or keeping my home up and my appearance up are the things that I miss and bother me the most. 

Those I love have seen my decline and know that I am truly suffering. The only reason I am suffering is because of the lies told by the CDC. They admitted that their statistics were off regarding overdoses because they combined deaths caused by illegal drugs with those that were prescribed.

These so-called experts turned on those of us who take our opioid medication responsibly and have blamed us for the addiction issues in this country. Laws were made and bills were passed on this false information and now there are millions suffering. 

It's not right that our government continues to uphold the CDC opioid guideline, knowing that we are suffering and medications that will help are denied to us. We are treated like garbage for illnesses, diseases and injuries that doctors can't treat without fear of being raided by the DEA. Their medical licenses are way more important than our quality of life.

Nothing seems to be changing either and it probably won't in my lifetime. But I will continue to fight for those who need advocacy because there are a few good doctors willing to take a chance. 

MARGUERITE MORGAN

We are dying every day either by suicide or from being cut off from pain medication. Our hearts quit because they just can't take the pain that causes.

I just want to know why those that die from abusing drugs intentionally are more important than those of us who take our prescribed medication as directed. It seems life has truly turned upside down and nothing seems right anymore.

I suffer from intractable pain caused by an injury to my spine. I also have inflammatory rheumatoid arthritis, osteoarthritis, Addison’s disease, fibromyalgia and degenerative disc disease, to name just a few of my painful conditions.

I deserve to have this pain managed. I deserve to enjoy and take part in life, instead of just seeing it pass me by through my living room window. 

Marguerite Morgan lives in Washington state.

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

Study Launched to Look at Suicides of Chronic Pain Patients

By Pat Anson, PNN Editor

One of the more unrecognized and under-reported aspects of the opioid crisis is what happened to millions of chronic pain patients in the U.S. who were tapered or cut off from opioid medication in the name of preventing addiction and overdoses.

We know a lot about opioid prescribing. The number of prescriptions has fallen by about a third since their peak. And the supply of opioid pain relievers, according to the DEA, is at its lowest level since 2006.  We can literally count them down to the last pill.

But we don’t know what happened to the patients. How many were abandoned by their doctors? How many became disabled or lost their jobs? How many died from strokes or heart attacks? How many surrendered to despair by taking their own lives? We simply don’t know.

Critics say pain patients have fallen through the wide cracks of a cruel and willfully blind public health experiment.

“I’ve seen patients destabilized and nearly die by suicide after prescription opioids were stopped. I’ve been receiving notice of these for several years now. And I’ve never really been in a situation where a large number of patients were dying and health systems do not systematically study it and try to stop it,” says Stefan Kertesz, MD, a professor of medicine at University of Alabama at Birmingham (UAB).

“We have setup systems that insist on measuring prescription opioid doses and incentivizing reduction, but which are not measuring the outcomes of that change in care. Hospitals and clinics are not even asked to check what happened to the patient.”

In one of the first efforts to find out, Kertesz and co-investigator Allyson Varley, PhD, are recruiting family members and close friends of pain patients who died by suicide for a study to see what happened to their loved ones after changes were made in their opioid medication.

“What we’re trying to do is marry what patients are telling us is needed with scientific rigor, so that the appropriate people will listen to us when we say there is a problem,” said Varley, who works in the UAB Center for Addiction and Pain Prevention and Intervention.

“We are very committed to this. As long as people are having unsuccessful tapers, we’re interested in studying what’s happening and how to make it better, by increasing access to the care that you need when you have chronic pain, whether that’s opioids or not.”

Reaching Out to Survivors

The dead can no longer speak for themselves, which is why the survey is focused on reaching surviving loved ones who witnessed the pain and despair of their deceased spouse, child, parent, partner or friend.  

“We have to reach survivors who believe that is what they saw, and who can provide some preliminary information to hint that is really what happened,” Kertesz explained.

No one knows with any certainty how many pain patients have died by suicide in recent years, but it probably runs in the thousands. We’ve shared some of their stories on PNN, including that of Meredith Lawrence, who witnessed the suicide of her husband, Jay.

“I lost my husband in 2017 by suicide after his medications were taken away,” Lawrence said. “At that point, I wrote about our experience for the public, and it drew attention nationally. To see Dr. Kertesz and his colleagues take this seriously matters to me because nobody should lose a loved one over something treatable.”  

Much of the groundwork for the UAB survey was laid by patient advocate Anne Fuqua, who began compiling information about patient suicides several years ago. Her list has grown to over 100 well-documented suicides.

“This is truly a dream come true that these deaths are being taken seriously. When a dear friend died of a heart attack in 2014, the only way I could cope was finding and memorializing these deaths,” said Fuqua. “I could never have imagined this would come to fruition.”

Suicides Rising

The suicide rate in the U.S. has risen by about a third since the turn of the century, but there is no easy explanation for the increase. Suicides usually involve multiple factors, such as inadequate healthcare, mental health issues, drug and alcohol abuse, social isolation and economic inequality – what has been called “deaths of despair.” Throw in poorly treated or untreated pain and you have a recipe for suicidal thoughts.

Kertesz and Varley are hoping to get at least 200 family members and friends to participate in their survey. More would be better, because it could lead to larger studies that will help them document what is happening in the pain community.

“If we can convince people that this is a tragedy that needs to stop and we are passionately committed to it, and some people come forward, maybe we can get external funding to allow us to do the research that’s really needed,” says Kertesz. “It’s very hard to make the case when you don’t have pilot data to show that these families are willing to come forward.

“If one outcome of starting the study is that policymakers begin to realize that there is a serious risk to having physicians flee their patients, that would be a helpful outcome. It might change the dialogue a bit.”  

To participate in the online survey, click here. Or call 1-866-283-7223. The survey will take about 25 minutes. Respondents will be asked a series of questions about the loved one who died, their healthcare and life situation at the time of death.

Healthcare Is a Human Right That We Deserve

By Jennifer Kain Kilgore, PNN columnist

I shouldn’t have to write this. But here I am because of headlines like these:

“FTC Refunds Almost $3.9 Million to Purchasers of Deceptively Advertised Quell Wearable Pain-Relief Device”

My body went numb after reading that. The Quell, which I wore for four years, that I blogged about, that I recommended to friends and family? That Quell?

The Federal Trade Commission slapped parent company NeuroMetrix for deceptive advertising. Specifically, the company was cited for claiming the Quell works throughout the whole body and not just where it’s worn.

“NeuroMetrix settled the case – without admitting or denying the allegations – for $4 million. The company also agreed to stop claiming that Quell provides relief for chronic or severe pain beyond the knee area where the device is worn,” PNN reported.

Soon enough I was receiving texts -- “Is this true?” “Does it not work?”

It worked for me, but that’s not why I’m writing this. My testimonial is still and will remain on NeuroMetrix’s website. The company didn’t ask me to come to their defense. Despite the bad press, that gadget worked for me.

NEUROMETRIX IMAGE

Getting a $50 refund from NeuroMetrix in my PayPal account, though? The company’s silence and tacit admission made a helpless rage boil inside where anger has been simmering for weeks and months and years.

It made me as angry as when desperate pain patients called my law office, asking if I would draft legislation or talk sense to their doctors. Or when a genuinely good product came on the market but took advantage of customers. Or when the Sackler family didn’t go to prison after their pharmaceuticals created the conditions for the national opioid epidemic to truly explode. That bubbling anger began to rise.

Where should I direct this rage? At the callers? At the makers of the SpineGym, who took their crowdsourced money and failed to deliver on their promises? At the Sacklers? No, of course not. It’s not about them. My anger is bigger than that.

I shouldn’t have to write a reaction piece about the FTC’s decision. I shouldn’t have to draft laws to change a healthcare system in which pain patients are discounted, dismissed, and even overlooked.  Sometimes our limitations and physical pain prevent us from seeking the help we need.  

I shouldn’t have had to write for Pain News Network in the first place, though I’m thankful for the opportunity to do so. I became a columnist in order to try all the gadgets claiming to cure back and neck pain. If my doctors wouldn’t help me, I would help myself.

And there it is.

A record-breaking number of citizens have already voted. Despite their overwhelming voices, a Supreme Court justice was just appointed whose legal interpretation could dismantle the Affordable Care Act, which is on the Supreme Court Docket on November 10, just seven days after the most important election in history.

If you’re reading this, health insurance is crucially important to you or someone you love. Right now, our president’s legal team is in court attempting to kill the ACA without any kind of replacement during a global pandemic that has killed over 231,000 Americans.

But that’s not why I’m writing this.

I used to blog about my journey through the healthcare system. By the time I’d graduated from the Quell to an implanted spinal cord stimulator (which also works), I’d exhausted myself. It was time to focus on finally, finally healing. You know, being a normal person again.

The spinal cord stimulator -- controversial for sure, and not a surefire bet -- ended up working beyond my wildest dreams. Even though I’ve pulled on wires and scar tissue, my life has been partially restored. My doctor said the Quell was a good indicator as to whether a SCS would even work. If the Quell helped, so would a spinal cord stimulator.  

Before the SCS, I wasn’t able to consistently work as an attorney; I could barely leave my house. I was dependent on my husband for everything from insurance to carrying bags of groceries.

After the SCS, I can do yoga and pilates. I can lift laundry baskets. I can go to work and sit through a two-hour deposition. I can be an actual person again.

But that’s not why I’m writing this.

I shouldn’t have spent sixteen years of my life begging for help. I shouldn’t have to become a patient advocate and a writer for an online publication because I couldn’t otherwise afford pain-relief devices.

I shouldn’t have to write this.

I shouldn’t have to fight my insurance company to get my treatments covered. I shouldn’t have to stagger bill payments to various hospitals so as not to overdraft my account. I shouldn’t be paying for my spinal cord stimulator more than a year after its implantation.

I shouldn’t -- we shouldn’t -- have to do these things. We shouldn’t have to fight so hard to live in what’s supposedly the greatest country on earth.  What’s so great about living in fear? Fear of the unknown, the future, access to healthcare resources, and effective treatments? I’ve lived in fear for long enough, and so have you.

I shouldn’t be here. You shouldn’t be here, reading this. This website shouldn’t exist, and we shouldn’t have to fight so hard. But one in five Americans adults has chronic pain, and something must be done.

Healthcare is a human right, and we deserve it.  So VOTE.  Protect your loved ones by protecting healthcare.

Jennifer Kain Kilgore is an associate attorney at MALIS|LAW, working in civil litigation. She has chronic back and neck pain after two car accidents. 

Survey Finds Over Half of MS Patients Abused by Caregivers

By Pat Anson, PNN Editor

People with multiple sclerosis already have enough problems living with a progressive disease and sky-high medical bills. But now there’s word that many of them are being abused by their own caregivers.   

Researchers at the University of California, Riverside surveyed 206 patients with advanced MS and found that over half of them were being abused in some way by an unpaid caregiver who was often a member of their own family. The mistreatment ranged from psychological (44%) and financial abuse (25%) to neglect (16.5%) and physical abuse (11%). Over 8 percent of patients said they were abused sexually.   

"We knew we would find some level of abuse and neglect, but we were surprised by how prevalent it is," said Elizabeth Morrison-Banks, MD, a health sciences clinical professor at the UC Riverside School of Medicine, who led the study. "The findings of this study represent a collective cry for help from so many families affected by multiple sclerosis across the United States."

MS is a chronic and disabling autoimmune disease that attacks the body’s central nervous system, causing pain, numbness, difficulty walking, paralysis, loss of vision and fatigue.

"Some people live with MS for many years but with milder symptoms, and they may remain completely self-sufficient and never require a caregiver,” Morrison-Banks explained. “Others are less fortunate and develop neurological disability that can make them vulnerable to abuse and neglect if they are unable to move around independently, take care of their own finances, or get away from the situation when family conflict escalates. These problems are compounded if the person with MS and family lack financial resources."

A recent study found over 75% of American adults with MS face financial hardship that has forced them to cut spending on food, clothing and housing. Many have gone into debt or filed for bankruptcy, and over a third have delayed or stopped filling prescriptions because they can’t afford them. The average cost of disease-modifying MS drugs is about $76,000 a year.

For MS patients who are struggling financially, hiring a professional caregiver is not an option, so many have to rely on family caregivers.

"Some family caregivers are also working full time, caring for children or other family members, and sometimes dealing with health issues of their own," explained Morrison-Banks. "I want to emphasize that the majority of family caregivers do not mistreat those they care for, even in situations that can be very challenging. Nonetheless, it is important to recognize the risk factors for mistreatment of people with disabilities, and do what we can to identify, mitigate, and prevent abuse and neglect."

Other risk factors for mistreatment include MS patients with higher levels of cognitive impairment, caregivers having a mental health problem, alcohol use by the caregiver or patient, and low levels of social support within the family.

"Being a full-time family caregiver for someone with substantial neurological disability often presents significant challenges," Morrison-Banks said. "Many families take these challenges in stride, but others end up in situations of abuse and/or neglect."

The survey findings have been published in the journal Multiple Sclerosis and Related Disorders. The research paper is believed to be the first to document the nature and extent of caregiver mistreatment of MS patients in the United States.

The survey did not include patients who had paid caregivers or trained clinicians. A study of paid caregivers is an important next step for the research team. The National Multiple Sclerosis Society funded the UC Riverside study.

U.S. in ‘Fragile State’ as Election Nears

By Roger Chriss, PNN Columnist

The United States is about to have its national election. And for the first time in American history, the election will happen amid a pandemic.

The country is deeply divided, unsure about how to address the coronavirus, what to do about health insurance or drug overdoses, and which way to move forward on social justice, racial inequality and socioeconomic divisions.

In the realm of public health, the coronavirus predominates as the country faces another surge in infections, with a record count of nearly 100,000 new cases Friday. Hospitalizations and deaths are rising across the nation.

“As we enter the coming months, which include a national election and many holidays, our country is in a fragile state. Many people are understandably worried about the days and weeks ahead,” Children’s Hospital of Philadelphia warned in a blog post.

“Wearing masks and resisting the temptation to take part in medium to large gatherings that include people who are not members of your immediate family/small bubble are things we can and must do to protect ourselves and our loved ones. We encourage all to be safe out there, and to get out and vote safely, if you have not done so already.”

In addition to the pandemic, overdose deaths are rising again, largely due to illicit fentanyl and other street drugs. The United Nations reports that synthetic cannabinoids are also a rising threat. And if all this weren’t enough, Washington state is seeing an invasion of murder hornets.

“Whatever the outcome of the election, the coming winter will be difficult. And whoever occupies the White House on January 21 will probably have to deal with another major epidemic before his term is over,” journalist Ed Yong writes in the Atlantic. “The U.S. has now clearly seen what happens when a pandemic occurs under Trump. It is an experiment that no one should ever want to rerun.”

The election process itself is fraught this year. NPR is reporting that hundreds of polling places in Iowa will be closed on Election Day due to the coronavirus. Voting for people quarantined or newly diagnosed with Covid-19 could also be difficult if they can’t vote by mail.

The election outcome is uncomfortably uncertain. Politico assembled a day-by-day guide to all the possible outcomes from November 3 to January 20, from recounts to Supreme Court intervention. If President Trump loses, Politico also put together a list of what he might do during his remaining days in office, from mass pardons to a revenge campaign against the “Deep State.”

Election Pain

This is the stuff that nightmares are made of. Some people are abandoning social media, going off Twitter or internet discussion forums, or deleting news apps and silencing their phones. Others are engaging in “radical self-care” by playing video games or binging on old TV shows all day long, or hibernating their way to November 4. There is no end of online discussion about how to get offline and avoid discussion of the pandemic, politics and election outcomes.

But after the election, some things will not change. People with chronic disorders will still have the same diagnoses, the same treatment options, and the same prognoses as they did before. Election outcomes matter, but not for some things.  

Most people with chronic painful disorders have already survived far worse than the coronavirus or this election. Election pain may lead to a sleepless night or two for some people, but chronic pain can lead to sleepless nights for years. Insomnia is a routine part of small fiber neuropathy, complex regional pain syndrome and ankylosing spondylitis.

Election pain may create digestive problems like GERD or IBS for some people, but chronic painful disorders can include a lifetime of gastrointestinal distress. The ability to eat comfortably and digest reliably is not something that people with Ehlers-Danlos syndrome, pancreatitis or inflammatory bowel disease enjoy.

Election pain may make the time after November 3 seem uncertain, but for people with disorders like epilepsy, multiple sclerosis or sickle cell disease, that uncertainty is normal. Life is never stable when your body may misfire at any time.

Election pain may make life even harder for people with these disorders. The best we can do is stick to our routines and stay focused on our health. Come the results of the election, we can be gracious. And if all else fails and everything is hellish, just keep going.

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. 

New Screening Tool Identifies 80% of Patients at High Risk of Rx Opioid Abuse

By Pat Anson, PNN Editor

A new opioid screening tool is being introduced that claims to predict – with 80% accuracy – which patients receiving an opioid prescription are likely to have an overdose or get an opioid abuse diagnosis within the next six months.

Geneia, a healthcare data firm based in Pennsylvania, is integrating the opioid screening tool into its analytics platform, which is used by hospitals, insurers, employers and physician groups providing healthcare to over 7 million patients.

Contrary to popular belief, abuse is relatively rare in patients prescribed opioids, so it’s a bit like finding a needle in a haystack. Less than one percent (0.7%) of patients on opioids suffer an overdose or abuse their medication, according to Geneia.

But the consequences of opioid abuse are so serious medically, legally and financially to both patients and providers that healthcare organizations are eager to identify patients who are most at risk.

"An ounce of prevention is worth a pound of cure," said Fred Rahmanian, Geneia’s chief analytics and technology officer. "Knowing in advance who is at high-risk for an opioid abuse diagnosis or overdose enables physicians to choose alternative pain management strategies."

For example, a hospital using Geneia’s screening tool might give a surgery patient deemed to be “high-risk” a non-opioid pain reliever like acetaminophen for post-operative pain.

‘It’s All Data Driven’

Opioid screening tools have been used for years to help providers identify high-risk patients. Usually they involve questionnaires in which a patient’s medical history is assessed, along with their personal and family history of alcohol and drug use. The risk assessment might also include genetic testing or asking if a patient suffered sexual abuse as a minor.   

Geneia’s screening tool is different. It only looks at the diagnostic codes used in a patient’s medical and pharmacy claims – known as ICD-10 codes – without getting any direct input from providers about patient history. The company’s algorithms search the diagnostic codes for 22 different variables that may indicate a patient may be prone to opioid abuse.

“It’s all data driven,” says Geneia CEO Heather Lavoie, who downplays the importance of questionnaires about patient history.

“Oftentimes you don’t get accurate information. Even about family history of substance use and abuse,” she told PNN. “People are not good historians. There’s often a lot of misinformation, so you’re not always getting an accurate response to questionnaires. Obviously, sometimes you do, but not universally. And so, the benefit is that we can, with very little information, be highly predictive.”

“Glad to see there are efforts to help identify people at increased risks of abuse.  We need accurate and easy to use predictive criteria for those at increased risk of abuse and overdose,” says PNN columnist Dr. Lynn Webster, a pain management expert who developed the first “opioid risk tool” about 15 years ago.  

“Much of the accuracy of tools depends on definitions.  Unfortunately, there are multiple definitions of abuse, misuse and addiction. This makes it difficult to understand what is actually being assessed and predicted with any tool, including this one.” 

Webster is puzzled why Geneia’s screening tool omits a patient’s personal history and genetic testing, and says it may rely too heavily on diagnostic codes.    

“Unfortunately, few physicians know how to diagnose abuse from misuse and addiction. For example, many providers still believe that if someone experiences withdrawal they are addicted, which is not necessarily true,” said Webster. “The bottom line is that if the tool is based on ICD-10 diagnoses it relies on the clinician’s ability to make accurate diagnoses, most of whom have never been trained to make such diagnoses.  

“I am surprised that genetic evaluation is not considered in their tool since the vulnerability of opioid addiction is mostly genetic. The balance of the vulnerability to addiction comes from environmental factors like social-economic despair and mental health disorders.”  

Another thing that makes Geneia’s screening tool unique is that it can be used with children and adolescents. Opioid risk tools are typically only used for patients 18 years of age or older.

High False Positive Rate

Geneia tested its screening tool against a database of several million insurance claims, and says it accurately identified 80 to 88 percent of patients who are likely to have an opioid abuse diagnosis or an overdose.

But analytics are not foolproof. Geneia’s screening tool has a false positive rate of nine percent – meaning about one in every ten patients will be flagged inappropriately as high-risk.

“The false positive rate, depending on the data-set, is pretty high because it’s a very rare event rate. It’s really hard to pick the needle out of the haystack,” explained Jasmine McCammon, a data scientist who designed Geneia’s screening tool.  

On the flip side of opioid abuse, the screening tool also identifies patients who are at not high risk, giving reassurance to doctors who are uncertain about whether a patient should be given opioids.

Regardless of what the screening tool finds, CEO Lavoie says the company’s analytics should never be used as a diagnostic device.

“Predictive models shouldn’t be used in place of strong medical practice. They really are to help advise and to provide contextual information, so they (doctors) can work with the patient more directly. It’s in no way a surrogate for good care, but it does help provide additional caution,” Lavoie said.

Growing Number of Seniors Discovering Medical Benefits of Cannabis

By Pat Anson, PNN Editor

A new survey shows that medical marijuana is increasingly being used by California seniors to treat pain, insomnia, depression and other conditions associated with old age. Many began using cannabis for the first time as older adults.

Researchers at the University of California at San Diego surveyed 568 seniors at a geriatric clinic in southern California. All were at least 65 years of age, and most were older than 75.

Fifteen percent of the seniors said they have used cannabis products within the past three years, with the method of consumption evenly split between lotions (35%), tinctures (35%) and smoking (30%). Over three‐quarters reported cannabis “somewhat” or “extremely” helpful in managing their symptoms, with few adverse effects.

Although medical marijuana has been legal in California since 1996, sixty-one percent of respondents said they used cannabis for the first time as older adults. Recreational use in California was legalized in 2016.

“Most older adults in the sample initiated cannabis use after the age of 60 years and used it primarily for medical purposes to treat pain, sleep disturbance, anxiety, and/or depression. Cannabis use by older adults is likely to increase due to medical need, favorable legalization, and attitudes,” researchers reported in the Journal of the American Geriatric Society.

Over half of respondents (53%) reported using cannabis on a daily or weekly basis. The majority (78%) used cannabis for medical purposes only, with the most common conditions being pain/arthritis (73%), sleep disturbance (29%), anxiety (24%), and depression (17%).

“It is not surprising that a rising percentage of seniors consider cannabis to be a viable therapeutic option in their later years. Many seniors struggle with pain, anxiety, restless sleep, and other conditions for which cannabis products may help mitigate,” said Paul Armentano, Deputy Director of NORML, a marijuana advocacy group.

“Moreover, many seniors are well aware of the litany of serious adverse side-effects associated with available prescription drugs, like opioids or sleep aids, and they perceive medical cannabis to be a practical and potentially safer alternative.”

Most respondents said their family and friends knew of their cannabis use, but less than half (41%) reported their healthcare provider was aware.

Previous studies have found that cannabis is growing in popularity among older adults, primarily due to changes in public attitudes.

Nationwide survey findings recently published in the Annals of Internal Medicine found that about 5% of adults aged 55 and older said they'd used marijuana or hashish in the previous month. Use was almost twice as high among men, with 6.7% reporting cannabis use compared to 3.5% of women.

Although interest in medical marijuana is growing, there is limited research in the U.S. on its effectiveness in treating pain and other symptoms, especially among seniors.

A large study in Israeli found medical marijuana can significantly reduce chronic pain in elderly patients without adverse effects. Many patients were also able stop or reduce their use of opioid medication.    

Nearly 60 percent who originally reported "bad" or "very bad" quality of life said their lives had improved to "good" or "very good." And over 70 percent reported moderate to significant improvement in their symptoms. About one in four Israeli adults use cannabis, one of the highest rates in the world.

What I Learned About Meditation and Acceptance

By Mia Maysack, PNN Columnist

Recently I was asked how I've managed to deal with agonizing pain every day for over 20 years. The answer is far from simple, as it has been an extraordinarily long road that I'll continue to travel for the rest of my life.  

After over a decade of attempting mainstream remedies such as pills, injections, procedures and other therapies, I reached a point of hopelessness that led to contemplating the possibility of giving up. I had become tired and sick of being sick and tired. 

I still am! 

At the beginning of my holistic journey, I felt as though all my options were exhausted. Enough already with the corporate approach to medicine, along with being treated as either a drug seeker or experimental lab rat. 

To be clear, I'm tremendously grateful for all the avenues I've been able to travel, as well as the providers who did what they could to help me along the way. I am even thankful for the doctor who initially misdiagnosed my ear infection as “swimmer’s ear” -- even though it almost cost my life and led to a permanent state of discomfort. 

I wouldn't be who I am without those experiences, nor would I now be in this position to assist others in the treacherous journey that is chronic illness. 

Acknowledging grief, as real a symptom as the hurt itself, was a first step for me. I had to come to terms with knowing what I experienced was not a personal punishment, and also develop a relationship or coexistence with it that was mandatory for my survival.  

After growing in affirmation of those truths, I was then able to wrap my mind around acceptance. That didn't mean I liked the situation and I still don't! My illness doesn't define who I am as a person or where I'm able to go from here -- based on the things that I can control.  

This would be about the time some of you may question the merit of what I'm speaking about. So let me take this moment to break it down.  

Is an altered state of mind going to address or correct all my problems?  No.

Am I suggesting the idea that "positivity" cures?  Also no.  

I am reminded of a medical professional who endured a traumatic spinal injury and was told they'd never walk again. This began a four month long meditative process for this individual, who envisioned having surgery to the point of feeling its physical effects. Needless to say, they are not only walking again, but still practicing medicine.

Of course, there are things that cannot be "fixed." But shifting gears in how we think about a problem cultivates space for an opportunity to no longer dwell on what we're unable to change. Instead, we can invest and focus on what we can change.  

Dwelling isn't the same as grieving, so give yourself permission for having thoughts of "screw this!"  

Exploring new territory is what it means to be human. When we decide our experiences are opportunities for evolution, there's always a chance of merging onto an “on-ramp” that leads to personal growth and acceptance. 

That's another benefit of meditation that I encourage you to study for yourselves. When our bodily systems are more relaxed and we're breathing adequately, there's often improvement in how we’re feeling. Each moment consists of evolution because things are always changing, 

It took a while, but I've come to embody that same sort of energy. There's a lot throughout the world I can’t do very much about. But there are small things I can handle with great love, which includes coexisting with the different aspects of my life. Compassionate nurturing is a monumental and radical task, but it's vital and necessary.  

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.

Weather App Provides Personalized Pain Forecast

By Pat Anson, PNN Editor

Like many people who live with arthritis, Dave Richtor noticed that cold and wet weather made his joints ache more than usual.

“I’ve always just been stiffer and slower on grey days,” says Richtor, who lives in the seaside city of Brighton, south of London. “I’m in bed for ten hours a day. When I’m waking up and stiff, there’s obviously been in the night a temperature change.

“My grandma used to know when a storm was coming 20 minutes before it happened. She’d say, ‘Oh, a storm is coming. I’m getting a headache.’”

Feeling “under the weather” is more than just family folklore. Richtor was intrigued by a recent University of Manchester study called Cloudy With a Chance of Pain, which analyzed data from over 10,000 UK residents who recorded their daily pain levels on a smartphone app. The GPS location of their phones was then compared to local weather conditions.

The study found a modest association between weather and pain, with people more likely to feel muscle aches and joint pain on days with low barometric pressure – and the wet and windy weather that usually comes with it.

The study not only gave credibility to a link between weather and pain, it gave Richtor an idea. Why not create an app that gives users a personalized pain forecast? Many apps track the weather and some keep track of pain levels, but there were no apps that married the two.  

“I’ve done extensive research into it, and can’t see those two things matching up,” Richtor told PNN. “Most people I know in this field have been like, ‘Why hasn’t anyone done this before?’”

That’s the inspiration behind Weather Flare, a free health app designed to help people with chronic pain anticipate changes in the weather and their pain levels. Users create a personal profile of their conditions, medications and symptoms, which are then compared to weather conditions provided by AccuWeather. The app “learns” from user input and develops a customized forecast to help people prepare for changes in their symptoms. 

Richtor is currently holding a Crowdfunding campaign to raise money for further upgrades to the Weather Flare app.

Weather Flare is not just for pain sufferers. Richtor says people with asthma, allergies and other health conditions can benefit from knowing about weather conditions such as air quality and pollen counts.

He’s also working with a professor at the University of Sussex to develop a database to warn of drug interactions caused by the weather. For example, people with psoriasis who take methotrexate can be sensitive to prolonged sunlight.

“We’re incredibly excited to have the University of Sussex onboard to assist us with further developments for our app, making Weather Flare even more supportive for sufferers,” says Richtor. “The positive thing about me just having this crazy idea in my head, is that I can help other people manage their own conditions. If it just makes 1% of difference to someone’s day, then I’ve achieved what I set out to do.” 

The app is still in beta stage – meaning the developers are still working out some technical issues. When I downloaded the app, it was unable to recognize my location despite repeated attempts.

Weather Flare is not just for people in the UK. Because AccuWeather provides forecasts and weather conditions around the world, it can be used anywhere. To download the app, click here.

Study Finds ‘Evidence Lacking’ for Most Fibromyalgia Treatments

By Pat Anson, PNN Editor

A new analysis has found little evidence to support the long-term use of any medication or therapy to treat fibromyalgia, a poorly understood disorder characterized by widespread body pain, fatigue, poor sleep and depression.

An international team of researchers from Brazil and Australia reviewed 224 clinical trials of fibromyalgia treatments and found many of them small and of poor quality. High quality evidence was found for cognitive behavioral therapy (CBT), anti-depressants, and central nervous system (CNS) depressants as short and medium-term treatments for fibromyalgia. No treatment was found to be effective long term.

“In this systematic review, the effectiveness of most therapies for fibromyalgia was not supported. Strong evidence supported only cognitive behavioral therapy for pain, as well as antidepressants and central nervous system depressants for pain and quality of life, but these associations were small,” wrote lead author Vinícius Cunha Oliveira, PhD, an adjunct professor at Federal University of the Valleys of Jequitinhonha and Mucuri in Brazil.

“Some therapies may be associated with small reductions in pain and improvements in quality of life in people with fibromyalgia; however, current evidence is lacking for most therapies.”

The study findings, published in JAMA Internal Medicine, reflect what many fibromyalgia sufferers already know; many treatments are ineffective in improving their symptoms.

The Food and Drug Administration has approved only three drugs for fibromyalgia; the antidepressants duloxetine (Cymbalta) and milnacipran (Savella), and the anti-seizure medication pregabalin (Lyrica). All three drugs were originally developed for other medical conditions and are being repurposed as treatments for fibromyalgia.

A large 2014 survey of fibromyalgia patients by the National Pain Foundation found that most people who tried the three FDA-approved drugs did not feel they were effective.

Exercise, acupuncture, massage, electrotherapy, myofascial release, and several other non-pharmaceutical treatments are also commonly recommended for fibromyalgia pain. Researchers found only “moderate” evidence to support their short-term use. High quality evidence was only found for CBT, a form of meditation in which a therapist works with a patient to reduce unhelpful thinking and behavior.

“Clinicians should be aware that current evidence for most of the available therapies for the management of fibromyalgia is limited to small trials of low methodological quality,” researchers concluded. “Clinicians and patients should choose therapies by considering other important outcomes in addition to those presented in this review, such as adverse effects, out-of-pocket costs, and patient preferences.”

The National Institutes of Health estimates about 5 million Americans have fibromyalgia. Most people diagnosed with fibromyalgia are women, although men and children also can be affected.