5 Million U.S. Cancer Survivors Live with Chronic Pain

By Pat Anson, PNN Editor

Over five million cancer survivors in the United States live with chronic pain, a fast-growing population that is expected to double by 2040 due to the aging of the population, early cancer detection and advances in treatment, according to a new study by the American Cancer Society.

Chronic pain is one of the most common side effects of chemotherapy and other forms of cancer treatment, but until now there has been little information on its prevalence among cancer survivors.

Researchers looked at data from the National Health Interview Survey from 2016-2017 and found that about a third of cancer survivors (34.6%) have chronic pain. About one in six (16.1%) have “high impact” chronic pain (HICP) – defined as pain that limits life or work activities on most days.

Based on that survey data, researchers estimate the total number of cancers survivors in the U.S. at 15.5 million. About 5.39 million of them have chronic pain and 2.51 million have high impact chronic pain.

“We found the prevalence of chronic pain and HICP among cancer survivors to be almost double that in the general U.S. population. Chronic pain and HICP were more prevalent in survivors who were unemployed and who had low socioeconomic status, inadequate insurance, and had some specific types of cancer,” researchers reported in JAMA Oncology.

“The patterns of chronic pain that we observed in cancer survivors may be explained by barriers to cancer care and pain management as well as by the type and extent of cancer treatment received.”

One barrier to pain management stems from efforts to rein in opioid prescribing to prevent abuse and addiction. While the 2016 CDC opioid guideline is intended for “noncancer” patients, it is also applies to patients “who have completed cancer treatment, are in clinical remission, and are under cancer surveillance only.”

Two experts in oncology and palliative care at the University of Pennsylvania say the CDC’s inclusion of cancer survivors was a mistake because it is not uncommon for cancer pain to persist long after a cancer is treated.  

“Unfortunately, this arbitrary distinction is not consistent with the evidence of pain trajectory in cancer survivors,” Neha Vapiwala, MD, and Salimah Meghani, PhD, wrote in an op/ed also published in JAMA Oncology. “Similar levels of pain were reported in survivors who were still receiving cancer treatment and those who had completed active cancer treatment.”

It’s not uncommon for cancer patients undergoing active treatment to be denied pain medication. Many doctors are reluctant to prescribe opioids, regardless of the diagnosis.

“My cancer doctor will no longer prescribe pain meds for me because I now see a pain doctor. The pain doctor doesn't understand the new cancer drug I'm on and that the side effects of this drug are pain, so he is very reluctant to manage my cancer pain,” a patient with lymphoma told us. “Many days I wonder if it would just be better to let the cancer take its course than to be scrutinized and treated like a criminal.”

April Doyle is being treated for Stage 4 terminal breast cancer, but a Rite Aid pharmacist refused to fill her prescription for Norco because he was worried about being fined or even losing his job. April’s video about the experience went viral.

“I have to take 20 pills a day just to stay alive,” she explains in the video. “Every time I take my pain pill prescription there, they give me the runaround. They don’t have enough in stock or they need me to come back tomorrow because they can’t fill it today. Or something stupid. It’s always something and it’s always some stupid excuse.”

The American Cancer Society study found that chronic pain was most common among cancer survivors treated for bone, kidney, throat-pharynx and uterine cancers.  About half still had pain after their cancer treatment ended.

A Gut Feeling About Fibromyalgia

By Pat Anson, PNN Editor

Over the years there’s been a lot of speculation about what causes fibromyalgia – everything from gluten and genetics to childhood trauma, spinal fractures and a weakened immune system.

About 5 million Americans suffer from fibromyalgia, a poorly understood disorder characterized by deep tissue pain, fatigue, mood swings and insomnia. It can take years for a patient to be diagnosed and treatments are often ineffective – in part because of uncertainty about what actually causes fibromyalgia.

For the first time, researchers at McGill University Health Centre in Montreal have found an association between gut bacteria and fibromyalgia. It’s not clear whether the microbes cause fibromyalgia or if they are a symptom, but the discovery opens the door to new forms of treatment and diagnosis. The findings are being reported in the journal Pain.

"We found that fibromyalgia and the symptoms of fibromyalgia — pain, fatigue and cognitive difficulties — contribute more than any of the other factors to the variations we see in the microbiomes of those with the disease,” said lead author Amir Minerbi, MD, of the Alan Edwards Pain Management Unit at McGill University Health Centre. 

“We also saw that the severity of a patient's symptoms was directly correlated with an increased presence or a more pronounced absence of certain bacteria - something which has never been reported before."

Minerbi and his colleagues enrolled 156 women in their study – about half had fibromyalgia and the rest were a healthy control group. Participants were interviewed and gave stool, blood, saliva and urine samples, which were then compared.

Researchers found that the two groups had strikingly different types and amounts of gut bacteria. Nineteen different species of bacteria were found in either greater or lesser quantities in the gut microbiomes of fibromyalgia patients than in the healthy control group.

For example, Faecalibacterium prausnitzii, one of the most abundant and well-studied bacteria in the human gut, was found to be depleted in fibromyalgia patients. It is believed to block pain and inflammation in the intestines.

Other bacteria associated with irritable bowel syndrome, chronic fatigue syndrome and interstitial cystitis were found to be abundant in the fibromyalgia patients, but not in the healthy control group.  

The bacterial differences don’t appear to be related to diets, lifestyles or genetics, since some of the healthy participants lived in the same house as the fibromyalgia patients or were their parents, offspring or siblings.

"We used a range of techniques, including Artificial Intelligence, to confirm that the changes we saw in the microbiomes of fibromyalgia patients were not caused by factors such as diet, medication, physical activity, age, and so on, which are known to affect the microbiome," says Minerbi.

Researchers say it's not clear whether the changes in gut bacteria seen in fibromyalgia patients are simply markers of the disease or whether they play a role in causing it. Because fibromyalgia involves a cluster of symptoms, the next step will be to investigate whether there are similar changes in the gut microbiome of patients with other types of chronic pain, such as back pain, headaches and neuropathic pain.

“This is the first evidence, at least in humans, that the microbiome could have an effect on diffuse pain, and we really need new ways to look at chronic pain." said senior author Yoram Shir, MD, Director of the Alan Edwards Pain Management Unit

If their findings are confirmed, researchers think their discovery could speed up the process of diagnosing fibromyalgia.

"By using machine learning, our computer was able to make a diagnosis of fibromyalgia, based only on the composition of the microbiome, with an accuracy of 87 per cent. As we build on this first discovery with more research, we hope to improve upon this accuracy, potentially creating a step-change in diagnosis," says Emmanuel Gonzalez, PhD, Canadian Center for Computational Genomics and the Department of Human Genetics at McGill University.

Several previous studies have suggested an association between diet and fibromyalgia. Donna Gregory Burch says her fibromyalgia symptoms improved when she went on a gluten-free diet. Studies show that consuming food additives such as monosodium glutamate (MSG) can worsen symptoms, while foods rich in Vitamin D can help reduce joint and muscle pain.

16 Key Findings about Arachnoiditis

By Forest Tennant, MD, PNN Columnist

We initiated the “Arachnoiditis Research Project” about 6 months ago. Our first goal was to pull together what we have learned to this point. While we continue to gather new information, this short report is an interim attempt to get our findings into the patient and practitioner communities.  

This report is not intended to be a formal protocol or guideline, but a way to pass on what we have found and determined during the course of our learnings.  Please keep in mind that research is neither static nor absolute.  In the future, newer findings will likely both clarify and expand upon our initial findings as presented in this report.    

Frankly, the response to the Arachnoiditis Research Project has been overwhelming. Each day we receive inquiries from patients and practitioners. Patients want help. Practitioners want to know what to do.

We have now reviewed over 300 MRI’s of Adhesive Arachnoiditis (AA) cases. We have received inquiries from 5 continents and over 17 countries. One thing is clear. The need to research and identify treatment for AA is here.  

The goal of our research is to bring AA treatment to every community worldwide. How? By developing both diagnostic and treatment protocols that can be implemented by any medical practitioner in every community. Here is what we have learned so far:

16 Findings about Adhesive Arachnoiditis  

1. Treatment efficacy is best achieved by the simultaneous administration of a three component medication program to suppress neuroinflammation, promote neuro-regeneration (nerve regrowth), and provide pain control to function. Medication for these three categories can be competently prescribed by any primary medical practitioner.  

2. The most common cause of lumbar sacral AA is no longer dural puncture or trauma but intervertebral disc deterioration and spinal stenosis, which has forced cauda equina nerve roots to rub together causing friction, inflammation and adhesion formation.  

3. Although there is no single symptom that uniquely identifies AA, there are a few symptoms that the majority of AA patients will usually have.  A simple 7-question screening questionnaire has been developed to help in identifying potential AA. If a patient answers “yes” to at least four of the seven questions in the test, they should immediately be evaluated by a physician to confirm the diagnosis.  

4. A contrast MRI or high-resolution TESLA-3 or higher MRI can be used to visualize the cauda equina nerve roots and show abnormal swelling, displacement, clumping, and adhesions between clumps and the arachnoid layer of the spinal canal covering.  A greater number and larger size of clumps is generally associated with the most severe pain and neurologic impairments.  

5. Some MRI’s are inconclusive or equivocal even though typical symptoms may be present.  In these cases, therapeutic trials of anti-neuroinflammatory drugs and pain control are warranted.  

6. Spinal fluid flow impairment is common in AA patients and appears to be a cause of headache, blurred vision, nausea, and dizziness.  Obstruction or back-up of fluid can often be seen on an MRI.   

7. Spinal fluid “seepage” throughout the damaged arachnoid layer and wall of the lumbar sacral spine covering is common and can be a cause of pain, tissue destruction and severe contraction that causes restriction of extension of arms and legs.  A physical sign of chronic seepage is indentation of tissues around the lumbar spine.  

8. Pain due to AA appears to be a combination of two types: inflammatory and neuropathic (nerve damage).  It may also be centralized with what is called “descending” pain.  Proper pain control may require medicinal agents for all types.  

9. There is currently no reliable laboratory test for the presence of active neuroinflammation, although certain markers (by-products of inflammation) such as C-Reactive Protein and myeloperoxidase may sometimes show in the blood.  Neuroinflammation may go into remission, but it may also act silently to cause progressive nerve root destruction.  

10. Basic science and animal studies show the neuro-steroids (hormones made inside the spinal cord) have the basic functions of neuroinflammation suppression and neuro-regeneration stimulation.  Our observations clearly indicate that the patients who have improved the most have taken one or more of the hormones reported to reduce neuroinflammation and promote and support neuro-regeneration.  

11. Patients who have had AA for longer than 5 years must rely on aggressive pain control to function and achieve recovery.  After a long period of untreated neuroinflammation, scarring of nerve roots is too severe for much regeneration to occur.  

12. The drugs and hormones required for suppression of neuroinflammation and promotion of neuro-regeneration do not need to be taken daily to be effective and prevent side effects.  Medical practitioners have a choice of agents, and they can be competently prescribed by primary care practitioners.  We have found that three times a week dosing is usually quite sufficient.

13. Persons who have developed AA without warning, trauma or chronic disc disease have often been found to have a genetic connective tissue disorder of which the most common are Ehlers-Danlos syndromes.  

14. Cervical neck arachnoiditis is primarily a clinical and presumed diagnosis as there are no nerve roots to clump and observe on MRI.  The key MRI finding is spinal fluid flow obstruction and the major clinical symptom is extreme pain on neck flexing.  

15. Only ketorolac among the anti-inflammatories, and methylprednisolone among the corticoids are routinely effective in AA.  Other anti-inflammatories and corticoids either do not cross the blood brain barrier or therapeutically attach to glial cell receptors.  

16. Some seemingly unrelated compounds found to suppress microglial inflammation in animal and invitro studies also appear to have therapeutic benefit as neuroinflammatory suppressors in AA patients.  These include pentoxifylline, acetazolamide, minocycline and metformin.

The Tennant Foundation has also released an enhanced protocol for primary care physicians who treat AA patients. You can find the protocols and research reports on our website.

Forest Tennant, MD, MPH, DrPH, has retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis.

This report is provided as a public service by the Arachnoiditis Research and Education Project of the Tennant Foundation and is republished with permission. Correspondence should be sent to veractinc@msn.com

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.

WHO Recognizes Chronic Pain as Disease With New Coding System

By Pat Anson, PNN Editor

The World Health Organization has adopted a new classification system for chronic pain, assigning it the code ICD-11 in a revision of the International Classification of Diseases (ICD). It’s the first time the ICD will include a specific diagnostic code for chronic pain, along with sub-codes for several common chronic pain conditions. 

The new classification system is important because it treats chronic pain as a distinct health condition and as a symptom to an underlying disease. It also takes into account the intensity of pain, pain-related disability, and psychosocial factors that contribute to pain.

“The inclusion of the new classification system for chronic pain in ICD-11 is an important milestone for the pain field,” says Lars Arendt-Nielsen, MD, President of the International Association for the Study of Pain (IASP), which headed a task force that developed ICD-11.

The new coding system will make it easier for physicians to diagnose, classify and get treatment for chronic pain patients. Insurers will use the new codes to authorize payments and researchers can use them to more easily track and measure the effectiveness of therapies. That’s the good news. 

The bad news is that the ICD changes won’t formally take effect until January 1, 2022. 

Under the current system, chronic pain conditions are poorly categorized under the code ICD-10, which makes it difficult for complex conditions such as fibromyalgia and Complex Regional Pain Syndrome (CRPS) to be classified. That led some physicians to diagnose patients with unexplained pain as having a somatic symptom disorder. 

“A diagnosis of somatic symptom disorder implies that the pain is caused by a behavioral, that is, mental condition. However, it is not appropriate to diagnose individuals with a mental disorder solely because an alternative medical cause cannot be established,” Jaochim Scholtz, MD, an IASP task force member, explained in Practical Pain Management.  

Under the new coding system, patients with fibromyalgia or CRPS could be classified as having a “primary pain” disorder, one of seven new sub-codes for chronic pain conditions:

1. Chronic primary pain

2. Chronic cancer-related pain

3. Chronic post-surgical or post-traumatic pain

4. Chronic neuropathic pain

5. Chronic secondary headache or orofacial pain

6. Chronic secondary visceral pain

7. Chronic secondary musculoskeletal pain.

There is some overlap between the different diagnostic codes. For example, neuropathic pain can be a symptom of cancer or chemotherapy, while trigeminal neuralgia could fall under neuropathic or orofacial pain. The idea is to give physicians a range of codes to choose from instead of the limited choices they have today.

“The integration of chronic pain in ICD-11 sends a strong signal that pain will achieve appropriate representation in this international standard for reporting diseases and health conditions,” said Scholtz. “The coding system also provides fundamental information for the identification of health trends and healthcare planning. It is widely hoped that the new systematic classification of chronic pain in the ICD-11 will support epidemiological, and other research that is essential for the development of future health policies.”

The classification system was outlined in a free online article published in the January 2019 issue of PAIN.

American Pain Society Likely to File for Bankruptcy

By Pat Anson, PNN Editor

The board of directors of the American Pain Society (APS) is recommending to its members that the organization cease operations and file for bankruptcy, PNN has learned.

The APS is a non-profit, research-based organization that focuses on the causes and treatment of acute and chronic pain. Although many of its members are researchers and academics who are investigating non-opioid treatments for pain, the APS has been named as a defendant in numerous “spurious lawsuits” involving opioid prescriptions.

“Despite our best efforts, APS was unsuccessful in its attempts to resolve these lawsuits without the need for what will no doubt be lengthy and expensive litigation. The anticipated time-consuming and costly litigation combined with the declining membership and meeting attendance has created the perfect storm placing APS in a precarious financial position,” the board said in a letter sent to its members yesterday.

“Constrained by these unfortunate circumstances, we do not believe APS can continue to fulfill its mission and meet the needs and expectations of our members and community.”   

In order to proceed with a Chapter 7 bankruptcy filing, only 10% of the organization’s 1,173 active members need to approve the board’s recommendation. Assuming there are sufficient votes, an independent third party trustee would then be appointed by a bankruptcy judge and all lawsuits pending against APS will be subject to an automatic stay.

“This will allow APS to minimize legal expenses and maximize recoveries for its creditors, as opposed to future dissipation of assets in defending the lawsuits which have no end in sight,” the board wrote.

The APS membership vote will be tallied May 29th.

“Sad day for U.S. pain research, education, advocacy and patient care,” APS member and Stanford University psychologist Beth Darnall, PhD, tweeted to her followers.

In recent years, thousands of lawsuits have been filed by states, cities and counties seeking to recover billions of dollars in damages caused by the “overprescribing” of opioid pain medication. The lawsuits initially focused on Purdue Pharma and other opioid manufacturers, but have recently expanded to include opioid distributors, wholesalers, pharmacies and professional medical organizations like the APS as defendants.

If the APS files for bankruptcy, it would be the second pain management organization to cease operations in recent months. In February, the Academy of Integrative Pain Management (AIPM) shutdown, largely due to financial problems.  

“It's really sad that pain organizations are failing,” said Bob Twillman, PhD, the former Executive Director of AIPM. “I'm not clear about the extent to which this was an anticipated or desired outcome of the lawsuits against opioid manufacturers, but it strikes me that an effort to say that we've been harming people by treating pain the wrong way has now eliminated two organizations focused on treating pain the way every guideline now says it should be treated, and on discovering new treatments that might obviate the need for opioids.”

Twillman says the shutdown of APS and AIPM will cause “significant gaps in the field” of pain management.

“The unintended consequences here may end up being quite ironic," he added.

Guilt by Association 

Like other professional medical organizations, APS relied on corporate donors to help pay for its annual meetings and widely respected publication, The Journal of Pain. That meant accepting nearly $1 million in donations from Purdue Pharma, Janssen, Depomed and other opioid manufacturers.

It also meant being targeted by lawyers and politicians in a campaign of guilt by association.

In 2018, APS was one of the medical societies and patient advocacy groups singled out by Missouri Sen. Claire McCaskill (D) in a Senate report that accused the organizations of being mouthpieces for opioid manufacturers. 

“Initiatives from the groups in this report often echoed and amplified messages favorable to increased opioid use — and ultimately, the financial interests of opioid manufacturers,” the report found.

McCaskill’s report failed to mention that she accepted nearly $500,000 in campaign donations since 2005 from the national law firm of Simmons Hanly Conroy, which represents many of the plaintiffs involved in opioid litigation. It has named the APS as a defendant in several of those lawsuits, along with American Academy of Pain Medicine and American Geriatric Society “for working with the manufacturing defendants in promoting opioids to doctors and patients.”

Simmons Hanly Conroy was the third largest contributor to McKaskill during her losing bid for re-election last year, donating over $400,000, an amount seven times larger than it gave to another candidate in 2018, according to OpenSecrets.org.

According to its website, Simmons Hanly Conroy currently represents governmental entities in Illinois, Louisiana, Texas, and eight New York counties in opioid lawsuits. The law firm reportedly stands to collect one-third of the proceeds from opioid settlements, which could potentially reach $50 billion, according to a Bloomberg analyst.

‘Corrupting Influence’

APS is also mentioned in a congressional report released this week by Reps. Katherine Clark (D-MA) and Hal Rogers (R-KY). The “Corrupting Influence: Purdue and the WHO” report accuses the World Health Organization of being unduly influenced by Purdue Pharma and other opioid makers when it developed guidelines in 2011 and 2012 to treat pain in adults and children.

“The web of influence we uncovered, combined with the WHO’s recommendations, paints a picture of a public health organization that has been manipulated by the opioid industry,” the report said. “The investigation revealed that multiple organizations that claimed to be independent patient advocacy groups, including the American Pain Society, received significant payments from opioid manufacturers.”

The report does not mention that Rep. Clark has also accepted significant payments from drug makers. According to OpenSecrets.com, Clark has received over $522,000 in campaign donations from the healthcare industry since 2013, including donations from Pfizer, Celgene, Takeda, Biogen, Vertex, AstraZeneca and Sanofi.

Rep. Rogers has received over $581,000 in campaign donations from the healthcare industry during his 30 years in Congress.

Chronic Pain Causes Brains to Age More Rapidly

By Pat Anson, PNN Editor

Poorly treated or untreated chronic pain can lead to a number of other health problems, from high blood pressure and insomnia to depression and anxiety.

Now there is evidence that chronic pain also causes brains to age more rapidly, raising the risk of developing Alzheimer’s disease and other neurological problems associated with aging.

“Our findings highlight the need to address chronic pain, not just in older individuals but in potentially everyone, as pain may have unintended consequences in the brain that we don’t yet fully understand,” said lead author Yenisel Cruz-Almeida, PhD, a researcher at the University of Florida Institute on Aging.

Over a three-year period, Cruz-Almeida and her colleagues used magnetic resonance imaging (MRI) to measure the volume of gray and white matter in the brains of 47 older adults, ages 60 to 83.  The volunteers were free of neurological disorders and in generally good health, although 33 of them had some type of chronic pain.

Volunteers who did not have chronic pain had brains that appeared four years younger than their actual age.

Chronic pain sufferers had brains that appeared an average of two years older. They were also more likely to have greater pain intensity, have a “less agreeable personality” and be less emotionally stable, according to researchers.

The University of Florida produced this video on the study, which was recently published online in the journal Pain.

“Not everybody ages the same way,” said Cruz-Almeida. “I don’t want people to think, ‘Oh, I have chronic pain. I’m doomed.’ This is not the case. That is not the message we want to get out. There is more nuance than that.”

Interestingly, the volunteers who reported getting pain treatment in the last three months had younger-appearing brains compared to those that did not, suggesting that pain relief slows brain aging. Pain sufferers who had a happier outlook on life and were generally more upbeat also had younger-appearing brains.

“The pain experience is not just in your brain,” said Cruz-Almeida. “There appear to be avenues or things that could be done to change brain age.

“Our findings also suggest that both pain treatments and psychological traits may significantly mitigate the effect of pain on the aging brain and could further decrease the risk of age-related deterioration and death.”

Cruz-Almeida is planning additional research with a larger sample of older adults that will look at ways to alleviate accelerated brain aging.

‘Radical Shift’ Predicted in Fibromyalgia Diagnosis and Treatment

By Pat Anson, PNN Editor

New research has uncovered a previously unknown connection between fibromyalgia and the early stages of diabetes, which could dramatically change the way the chronic pain condition is diagnosed and treated.

In a small study of 23 fibromyalgia patients and two control groups, researchers at The University of Texas Medical Branch at Galveston (UTMB) were able to separate patients with fibromyalgia (FM) from healthy individuals using a common blood test for insulin resistance, or pre-diabetes. They then treated the fibromyalgia patients with a medication targeting insulin resistance (IR), which dramatically reduced their pain levels.

“Although preliminary, these findings suggest a pathogenetic relationship between FM and IR,  which may lead to a radical paradigm shift in the management of this disorder,” researchers reported in the online journal PlosOne.

Fibromyalgia is a poorly understood disorder that causes widespread body pain, fatigue, insomnia, headaches and mood swings. The cause is unknown, the symptoms are difficult to treat and there is no universally accepted way to diagnose it.

"Earlier studies discovered that insulin resistance causes dysfunction within the brain's small blood vessels. Since this issue is also present in fibromyalgia, we investigated whether insulin resistance is the missing link in this disorder," said Miguel Pappolla, MD, a professor of neurology at UTMB.

Pappolla and his colleagues found that patients with fibromyalgia can be identified by their hemoglobin A1c levels, a protein in red blood cells that reflects blood sugar levels. A1c tests are widely used to diagnose type 2 diabetes and pre-diabetes, and are routinely used in diabetes management.

Researchers say pre-diabetics with slightly elevated A1c levels carry a higher risk of developing widespread body pain, a hallmark of fibromyalgia and other chronic pain conditions.

"Considering the extensive research on fibromyalgia, we were puzzled that prior studies had overlooked this simple connection," said Pappolla. "The main reason for this oversight is that about half of fibromyalgia patients have A1c values currently considered within the normal range.

“However, this is the first study to analyze these levels normalized for the person's age, as optimal A1c levels do vary throughout life. Adjustment for the patients' age was critical in highlighting the differences between patients and control subjects."

After identifying the fibromyalgia patients with elevated A1c levels, researchers treated them with metformin, an oral medication that manages insulin resistance by restoring normal blood sugar levels. The patients showed dramatic reductions in their pain levels, with half (8 of 16 patients) having a complete resolution of pain.

“Our data provides preliminary evidence suggesting that IR may be a pathological substratum in FM and sets the stage for future studies to confirm these initial observations. If confirmed, our findings may translate not only into a radical paradigm shift for the management of FM but may also save billions of dollars to healthcare systems around the world,” researchers reported.

Social Support Key to Recovery from Suicidal Thoughts

By Pat Anson, PNN Editor

Hardly a day goes by that I don’t get an email or a comment left on this website about suicide.

Recently a young military veteran named “Joe” reached out. Joe is depressed and unable to work because he has chronic back and leg pain

“The thing is, I’m just about to turn 28 and can’t fathom how I’m supposed to go on like this for another year or two let alone trying to live my life for the next 60-70 years,” Joe wrote. “I’m not going to do anything yet but I have been seriously looking into euthanasia. I haven’t been able to have a real conversation with anybody about it, not even one of my 5 therapists or my wife, because I already know their reactions.”

Joe said he felt very rational about his decision but was anxious to talk about it “without being thrown into a straightjacket.”

Joe’s instinctive urge to talk with someone could be the key to working through this difficult time in his life, according to a new study by researchers at the University of Toronto. They analyzed a survey of 635 Canadians with chronic pain who had seriously thought about suicide to find out what qualities made those thoughts go away. Suicide “ideation” disappeared in about two-thirds of them.

Having a social support network – someone to talk to – was the key.

“The biggest factor in recovery from suicidal thoughts was having a confidant, defined as having at least one close relationship that provide the person in chronic pain a sense of emotional security and well-being,” said lead author Esme Fuller-Thomson, PhD, a Professor of Social Work, Medicine and Nursing and Director of the Institute for Life Course & Aging.

“Even when a wide range of other characteristics such as age, gender and mental health history were taken into account, those with a confidant had 87 percent higher odds of being in remission from suicidal thoughts compared to those with no close relationships."

People with pain who stopped having suicidal thoughts were also significantly more likely to be older, female, white, better educated, and more likely to use prayer and spirituality to cope with daily problems.

Living in poverty and struggling to pay basic living expenses were barriers to recovery from suicide ideation. Poverty can severely limit access to healthcare, transportation and social activity.

"Clearly we need targeted efforts to decrease social isolation and loneliness among those experiencing chronic pain. These participants reported that pain prevented some or most of their activities, so they were particularly vulnerable to social isolation,” said Fuller-Thomson. “More awareness by the general public that mobility limitations associated with chronic pain can make it difficult for individuals to socialize outside the household, could encourage friends and family to visit and phone more and thereby decrease loneliness."

PNN’s recent survey of over 6,000 patients and healthcare providers shows how pervasive suicide is in the pain community. Nearly half the patients said they have considered suicide, while nearly one in four practitioners said they have lost a patient to suicide.

The good news is that public health agencies are finally starting to pay attention to these issues. Last week the U.S. Food and Drug Administration warned doctors not to abruptly discontinue or rapidly taper patients on opioid pain medication because of the risk of suicide.

“(FDA) has received reports of serious harm in patients who are physically dependent on opioid pain medicines suddenly having these medicines discontinued or the dose rapidly decreased. These include serious withdrawal symptoms, uncontrolled pain, psychological distress, and suicide,” the agency said.

If you or a loved one are having suicidal thoughts, support is just a phone call away. The Suicide Prevention Lifeline has trained counselors on duty 24/7 at 1-800-273-TALK.

1 in 5 Multiple Sclerosis Patients Misdiagnosed

By Pat Anson, PNN Editor

Nearly one in five patients who are told they have multiple sclerosis are misdiagnosed with the autoimmune disease, according to a new study of patients referred to two MS treatment centers in Los Angeles. The patients spent an average of four years being treated for MS before receiving a correct diagnosis.

MS is a chronic disease that attacks the body’s central nervous system, causing pain, numbness, difficulty walking, paralysis, loss of vision, and fatigue. The symptoms are similar to those of several other chronic conditions – including neuropathy, migraine and fibromyalgia – which often leads to a misdiagnosis.

Researchers at the Cedars-Sinai Multiple Sclerosis and Neuroimmunology Center analyzed the cases of 241 patients who had been diagnosed by other physicians and then referred to the Cedars-Sinai or UCLA MS clinics.

Their findings, published in the journal Multiple Sclerosis and Related Disorders, indicate that 43 of the 241 patients (18%) with a previous diagnosis of MS did not meet the criteria for the disease.

"The diagnosis of MS is tricky. Both the symptoms and MRI testing results can look like other conditions, such as stroke, migraines and vitamin B12 deficiency," said lead author Marwa Kaisey, MD. "You have to rule out any other diagnoses, and it's not a perfect science."

The most common correct diagnoses was migraine (16%), radiologically isolated syndrome (RIS) (9%), spondylopathy (7%), and neuropathy (7%). RIS is a condition in which patients do not experience symptoms of MS even though their imaging tests look similar to those of MS patients.

The misdiagnosed patients received approximately 110 patient-years of unnecessary MS disease modifying drugs. Nearly half received medications that carry a known risk of developing progressive multifocal leukoencephalopathy, a potentially fatal brain infection.

"I've seen patients suffering side effects from the medication they were taking for a disease they didn't have," Kaisey said. "Meanwhile, they weren't getting treatment for what they did have. The cost to the patient is huge — medically, psychologically, financially."

The cost of disease modifying medications for an MS patient in the U.S. exceeds $50,000 a year. Investigators estimated that the unnecessary treatments identified in this study alone cost almost $10 million. 

Researchers hope the results of the study will lead to new biomarkers and improved imaging techniques to help prevent future MS misdiagnoses.

A similar study in 2016 also found that MS patients were often misdiagnosed. One third of the patients were misdiagnosed for a decade or longer, most took unnecessary and potentially harmful medication to treat a disease they didn't have, and some even participated in clinical trials for experimental MS therapies. About a third suffered from morbid thoughts of death.

Menopause Linked to Chronic Pain

By Pat Anson, PNN Editor

It’s no secret that middle-aged women are far more likely than men to have chronic pain and to feel its effects more severely. A large new study tells us some of the reasons why.

VA researchers analyzed the health data of over 200,000 female veterans between the ages of 45 and 64 and found that women with menopause symptoms were nearly twice as likely to have chronic pain and multiple chronic pain diagnoses.

"Changing levels of hormones around menopause have complex interactions with pain modulation and pain sensitivity, which may be associated with vulnerability to either the development or exacerbation of pain conditions," says JoAnn Pinkerton, MD, Executive Director of the North American Menopause Society (NAMS). "This study suggests that menopause symptom burden may also be related to chronic pain experience."

Hormonal change alone wasn’t the only thing many of the women had in common. Those who were overweight, obese or had a mental health diagnosis were also more likely to have chronic pain. Eighteen percent of the female veterans had been diagnosed with post-traumatic stress disorder (PTSD), 13 percent suffered from depression and 15 percent had anxiety.

Common changes related to menopause and aging include weight gain, decreased physical activity, impaired sleep and negative mood, which can contribute to chronic pain and are also known to affect pain sensitivity and tolerance.

“Both chronic pain and menopause symptoms are strongly and consistently associated with psychosocial factors and health risk behaviors prevalent in and after the menopause transition,” said lead author Carolyn Gibson, PhD, San Francisco VA Health Care System. “Consideration should be given to integrated approaches to comprehensive care for midlife and older women with chronic pain, such as targeted cognitive behavioral therapy coordinated with interdisciplinary care providers.”    

The study findings are published in the journal Menopause.

A large 2018 study also found a strong association between menopause and symptoms of rheumatoid arthritis (RA). Researchers at the University of Nebraska Medical Center found that post-menopausal women with RA had a significant increase in functional physical decline. Menopause was also associated with worsening progression of the disease.