How Chronic Pain Can Lead to Autoimmunity Problems

By Forest Tennant, PNN Columnist

Every chronic pain patient must know and understand autoimmunity and how to combat it. Research on chronic pain has unequivocally determined that the chronic inflammation and tissue destruction caused by a painful disease or injury will produce autoimmunity.

Autoimmunity is a biologic phenomenon in which certain antibodies in the blood -- called autoantibodies -- turn against the body and attack one’s own tissues. Autoantibody means “self-attack.” This is in stark contrast to “immunity” which means antibodies only attack an invading virus, bacteria, poison or contaminant to protect the body.

Chronic pain that causes inflammation and tissue degeneration generates cellular destruction that can shed tissue particles into the blood stream. These tissue particles are considered foreign and unwanted by the body’s immune system, so it makes autoantibodies against them. Unfortunately, these autoantibodies may then attack normal tissue, giving the patient unexpected symptoms and more pain.

The symptoms and sequelae of autoimmunity can be mysterious and overwhelming. Such disorders as traumatic brain injury, Ehlers-Danlos Syndrome, adhesive arachnoiditis, post-viral, and stroke are particularly prone to the development of autoimmunity.

Although antibodies may attack any tissue in the body, autoantibodies seem to attack the soft tissues such as membranes around organs, ligaments, cartilage, small nerves and intervertebral discs. Another common target is the body’s natural immune protection system, including lymph nodes, thymus gland, mast cells and spleen.

The complications of autoimmunity usually begin without warning. Common clinical manifestations of autoimmunity and the presence of autoantibodies include allergies, skin rash, fibromyalgia, psoriasis, thyroiditis, carpal tunnel syndrome, and arthritis of the joints including the temporal mandibular, elbow and hand joints.

Serious painful and life-threatening autoimmune conditions may also occur, which include the kidney (glomerulonephritis), liver (hepatitis), nerves (neuropathy), spinal canal (arachnoiditis), adrenal gland and the pituitary gland. We now believe that autoimmunity, along with excess neuroelectric stimulation, to be the cause of Intractable Pain Syndrome (IPS).

How To Tell If You Have Autoimmunity

Every chronic pain patient needs to do a self-assessment to determine if their basic pain problem has caused autoimmunity. A failure to control autoimmunity will likely result in progressive complications, misery and probably an early death. As with most other medical conditions, the earlier the recognition, the better the control, suppression and outcome.

Patients should review the following list of some common autoimmune symptoms or conditions. If you have two or more, an assumption can be made that you have autoimmunity and must take actions to control and suppress it:

• Joint pain

• Carpal tunnel

• Histamine episodes or mast cell stimulation

• Cold hands (Raynaud’s)

• Allergies

• Mild recurring fever

• Neuropathy

• Medications stop working

• Irritable Bowel Syndrome (IBS)

• Food or Medication Sensitivity

• Hashimotos Thyroiditis

• Brain Fog

• Fibromyalgia

• Diarrhea, gastric upset, heartburn

• Periodic flushing and itching

• Herniated disc

• Constipation

• Psoriasis

• Exhaustion and Weakness

If you have two or more of these conditions, a laboratory blood test can help confirm it. Autoimmunity and its close association with chronic inflammation, immune suppression and allergy will almost always result in elevations of one or more of the following blood tests:

• C-reactive protein (CRP)

• Lymphocytes or eosinophiles

• Anti-nuclear antibody (ANA)

• Erythrocyte sedimentation rate (ESR)

• Interleukins-cytokines       

• Thyroid peroxidase antibodies (TPO)

• ASO Titer

• Tumor necrosis factor

Automimmunity may also result in decreased immunoglobulins and an altered albumin-globulin ratio.

At this time there is no specific, published treatment for chronic pain-induced autoimmunity. Based on our early investigations, we recommend patients take vitamins, supplements, low dose corticosteroids, low dose naltrexone (LDN) and hormone therapy to control and suppress autoimmunity. Further details can be found here.  

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up here.

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

Experimental Brain Implant Automatically Relieves Pain

By Pat Anson, PNN Editor

An experimental brain implant that automatically detects and relieves pain in laboratory animals has the potential to be adapted for human use, according to researchers at NYU Grossman School of Medicine. The computerized device is the first of its kind to target both acute and chronic pain, and may also be effective in treating anxiety, depression, panic attacks and other brain-based disorders.

“Our findings show that this implant offers an effective strategy for pain therapy, even in cases where symptoms are traditionally difficult to pinpoint or manage,” said senior author Jing Wang, MD, an Associate Professor of Anesthesiology at NYU Langone Health.

The technology, known as a closed-loop brain-machine interface, detects brain activity in the anterior cingulate cortex, a region of the brain that is critical for pain processing. A computer linked to the device identifies pain signals in real-time, triggering a therapeutic stimulation of another region of the brain, the prefrontal cortex, to ease pain sensations.  

Wang and his colleagues installed the tiny electrodes in the brains of dozens of rats and then exposed them to carefully measured amounts of pain. The animals were closely monitored to see how quickly they moved away from a source of acute pain.

The study findings, published in the journal Nature Biomedical Engineering, showed that rats withdrew their paws 40 percent more slowly from the pain source when the device was turn on. In addition, animals in acute or chronic pain spent about two-thirds more time in a chamber where the device was turned on than in another chamber where it was not.

Researchers say the implant accurately detected pain up to 80 percent of the time. Since the device is only activated in the presence of pain, it lessens the risk of overuse, tolerance and addiction.

“Our results demonstrate that this device may help researchers better understand how pain works in the brain,” says lead investigator Qiaosheng Zhang, PhD, a doctoral fellow in the Department of Anesthesiology, Perioperative Care and Pain at NYU Langone. “Moreover, it may allow us to find non-drug therapies for other neuropsychiatric disorders, such as anxiety, depression, and post-traumatic stress.”

Zhang says the implant’s pain-detection properties could be improved by installing electrodes in other regions of the brain besides the anterior cingulate cortex. He cautions, however, that the technology is not yet suitable for use in people. Researchers are investigating whether less-invasive forms of the implant can be adapted for human use.

Brain implants – also known as deep brain stimulators -- are currently used to prevent seizures and tremors in people with Parkinson’s disease and epilepsy.

Are NSAIDs Really Better Than Opioids for Post-Operative Pain?

By Pat Anson, PNN Editor

There have been a rash of recent studies promoting the use acetaminophen and non-steroidal anti-inflammatory drugs (NSAIDs) over opioids for post-operative pain.

One such study at a Houston hospital led surgeons to conclude that patients were better off with Tylenol. "This study provides us with a strategy to successfully manage pain after surgery using over-the-counter pain medication,” said Min Kim, MD, head of thoracic surgery at Houston Methodist Hospital.  

But critics point out that most of the studies never examine how patients feel about the effectiveness of their pain treatment — focusing instead on the number of opioid pills and smaller opioid doses being prescribed. Pain relief was a secondary consideration, if it was considered at all.

A rare exception to that is a study recently published in the Canadian Medical Association Journal (CMAJ), which found that ibuprofen and other NSAIDs gave better post-operative pain relief than the opioid codeine. In a systematic review of 40 clinical trials involving over 5,000 patients who had outpatient procedures, researchers said patients who took NSAIDs had lower pain scores 6 and 12 hours after surgery than patients taking low doses of codeine.

"In all surgery types, subgroups and outcome time points, NSAIDs were equal or superior to codeine for postoperative pain," wrote lead author Matthew Choi, MD, Associate Professor of Surgery at McMaster University in Ontario. "We found that patients randomized to NSAIDs following outpatient surgical procedures reported better pain scores, better global assessment scores, fewer adverse effects and no difference in bleeding events, compared with those receiving codeine.

“These findings are of general importance to any clinician performing painful medical procedures. The various trials in our meta-analysis evaluated a range of procedures, different NSAID types and various degrees of acetaminophen coadministration.”

But critics say the McMaster study also has flaws. The claim that “all surgery types” and “a range of procedures” were included in the analysis is misleading at best. Most of the studies — 28 of the 40 that were analyzed — involved dental surgery, a fact that is not sufficiently disclosed. The rest of the outpatient procedures were for plastic surgery and orthopedic corrections – which can hardly be compared to more serious surgeries that require more pain relief and days or weeks of recovery, not just 6 to 12 hours.      

Another issue is the use of codeine as a research subject. Stefan Franzen, PhD, a chemistry professor at North Carolina State who has an extensive background in biomedical research, questions whether low doses of codeine should even be compared to NSAIDs.

“I question the premise that codeine is the drug that is or should be used by dentists,” said Franzen, author of “Patient Z,” a book the examines the criminalization of pain care. “I read a few papers not cited by this report and they too do not find a great efficacy for codeine. Part of this may be dose. Most commonly they are using 30-60 mg of codeine, which is 5-10 mg of morphine. Not very much if you have severe pain.

“Codeine may be a poor choice, but it may also be a straw man. Why not use tramadol, for example?”

‘Manipulated Data’

Patient advocate Bill Murphy also has doubts about the selection criteria used in studies touting the benefits of non-opioid pain relievers. He believes some researchers cherry-pick evidence to support a conclusion they’ve already reached.

“Opioid sparing post-op surgery programs are nothing more than an attempt to solve a non-problem and in doing so, patients suffer needlessly. The data produced from such programs are very often manipulated by those who designed the program in an obvious attempt to skew the results in favor of a program they endorsed,” said Murphy, who helped get legislation passed in New Hampshire to ensure that pain patients have access to opioid medication.

Murphy has advocated on behalf of patients at Portsmouth Regional Hospital, which has an “Enhanced Surgical Recovery” program that significantly reduced the use of opioids. Instead of Vicodin, patients get Neurontin or nerve blocks for pain relief.

“I was personally called in to advocate on behalf of several patients who were left to suffer in pain following surgery only to have staff assure them their pain was being well managed,” Murphy explained in an email. “Surgeons and nurses reported they were doing very well with Portsmouth Regional’s new protocol for managing post-op pain when in fact, they were not doing ‘very well’ at all.

“These patients were in horrible pain. Of the three I spoke with, none were ever provided any relief. I was with one patient as she was discharged. She was in tears and moved at a glacial pace due to pain as her son and I helped her into his vehicle outside. It was heartbreaking to watch. Her adult son was furious. I stayed in touch with each patient for several weeks afterwards. Each suffered greatly, one was not making any gains in physical therapy due to her lasting pain.”

In 2019, only 11% of patients were prescribed an opioid while at the Portsmouth hospital, and less than 6% were discharged with an opioid prescription. Murphy says the hospital’s policy inevitably leads to some patients with poorly treated pain.  

“What Portsmouth Regional Hospital’s ‘Enhanced Surgical Recovery’ program was doing is akin to making patients bite down on a piece of wood, grind it out, and then convince them the whole experience was for their own good,” says Murphy.    

Doctors Required to Provide Patient Health Records at No Cost and On Demand

By Sarah Kwon, Kaiser Health News

A new federal regulation makes it easy to get test results and see what your doctor is recording about your health. One downside: You might not understand what you read.

Last summer, Anna Ramsey suffered a flare-up of juvenile dermatomyositis, a rare autoimmune condition, posing a terrifying prospect for the Los Angeles resident: She might have to undergo chemotherapy, further compromising her immune system during a pandemic.

After an agonizing three-day wait, the results of a blood test came back in her online patient portal — but she didn’t understand them. As hours passed, Ramsey bit her nails and paced. The next day, she gave in and emailed her doctor, who responded with an explanation and a plan.

For Ramsey, now 24, instant access to her test results had been a mixed blessing. “If there’s something I’m really nervous about,” she said, “then I want interpretations and answers with the result. Even if it takes a few days longer.”

On April 5, a federal rule went into effect that requires health care providers to give patients like Ramsey electronic access to their health information without delay upon request, at no cost. Many patients may now find their doctors’ clinical notes, test results and other medical data posted to their electronic portal as soon as they are available.

Advocates herald the rule as a long-awaited opportunity for patients to control their data and health.

“This levels the playing field,” said Jan Walker, co-founder of OpenNotes, a group that has pushed for providers to share notes with patients. “A decade ago, the medical record belonged to the physician.”

But the rollout of the rule has hit bumps, as doctors learn that patients might see information before they do. Like Ramsey, some patients have felt distressed when seeing test results dropped into their portal without a physician’s explanation. And doctors’ groups say they are confused and concerned about whether the notes of adolescent patients who don’t want their parents to see sensitive information can be exempt — or if they will have to breach their patients’ trust.

Barriers Removed

Patients have long had a legal right to their medical records but often have had to pay fees, wait weeks or sift through reams of paper to see them.

The rule aims not only to remove these barriers, but also to enable patients to access their health records through smartphone apps, and prevent health care providers from withholding information from other providers and health IT companies when a patient wants it to be shared.

Privacy rules under the Health Insurance Portability and Accountability Act, which limit sharing of personal health information outside a clinic, remain in place, although privacy advocates have warned that patients who choose to share their data with consumer apps will put their data at risk.

Studies have shown numerous benefits of note sharing. Patients who read their notes understand more about their health, better remember their treatment plan and are more likely to stick to their medication regimen. Non-white, older or less educated patients report even greater benefits than others.

For Sarah Ford, 34, of Pittsburgh, who has multiple sclerosis, reading her doctor’s notes helps her make the most of each visit and feel informed.

“I don’t like going into the office and feeling like I don’t know what’s going to happen,” she said. If she wants to try a new medication or treatment, reading previous notes helps her prepare to discuss it with her doctor, she said.

The new rule will have less impact on Ford and the more than 50 million patients in the U.S. whose doctors had already made their notes available to patients before the rule kicked in. However, only about a third of patients with access to secure online health portals were using them.

While most doctors who have shared notes with patients think it’s a good idea, the policy has drawbacks. One recent study found that half of doctors reported writing their notes less candidly after they were opened to patients.

Another study, published in February, found that 1 in 10 patients had ever felt offended or judged after reading a note. The study’s lead author, Dr. Leonor Fernandez, of Beth Israel Deaconess Medical Center, said there is a “legacy of certain ways of expressing things in medicine that didn’t really take into account how it reads when you’re a patient.”

“Maybe we can rethink some of these,” she said, citing the phrase “patient admits to drinking two glasses of wine a day” as an example. “Why not just write ‘two glasses of wine a day’?”

UC San Diego Health started phasing in open notes to patients in 2018 and removed a delay in the release of lab results last year. Overall, said Dr. Brian Clay, chief medical information officer, both have been uneventful. “Most patients are agnostic, some are super-jazzed, and a few are distressed or have lots of questions and are communicating with us a lot,” he said.

Some Records Withheld

There are exceptions to the requirement to release patient data, such as psychotherapy notes and notes that could harm a patient or someone else if released.

Dr. David Bell, president of the Society for Adolescent Health and Medicine, believes it’s unclear exactly what qualifies as “substantial harm” to a patient — the standard that must be met for doctors to withhold an adolescent patient’s notes from a parent. Clarity, he said, is especially important to protect teenagers living in states with less restrictive laws on parental access to medical records.

Most electronic medical records are not equipped to segregate sensitive pieces from other information that might be useful for a parent in managing their child’s health, he added.

Some doctors say receiving devastating test results without counseling can traumatize patients. Dr. James Kenealy, an ear, nose and throat doctor in central Massachusetts, said a positive cancer biopsy result for one of his patients was automatically pushed to his portal over the weekend, blindsiding both. “You can give bad news, but if you have a plan and explain, they’re much better off,” he said.

Such incidents aren’t affecting the majority of patients, but they’re not rare, said Dr. Jack Resneck Jr., an American Medical Association board trustee. The AMA is advocating for “tweaks” to the rule, he said, like allowing brief delays in releasing results for a few of the highest-stakes tests, like those diagnosing cancer, and more clarity on whether the harm exception applies to adolescent patients who might face emotional distress if their doctor breached their trust by sharing sensitive information with their parents.

The Office of the National Coordinator for Health Information Technology, the federal agency overseeing the rule, responded in an email that it has heard these concerns, but has also heard from clinicians that patients value receiving this information in a timely fashion, and that patients can decide whether they want to look at results once they receive them or wait until they can review them with their doctor. It added that the rule does not require giving parents access to protected health information if they did not already have that right under HIPAA.

Patient advocate Cynthia Fisher believes there should be no exceptions to immediately releasing results, noting that many patients want and need test results as soon as possible, and that delays can lead to worse health outcomes. Instead of facing long wait times to discuss diagnoses with their doctors, she said, patients can now take their results elsewhere. “We can’t assume the consumer is ignorant and unresourceful,” she said.

In the meantime, hospitals and doctors are finding ways to adapt, and their tactics could have lasting implications for patient knowledge and physician workload. At Massachusetts General Hospital, a guide for patients on how to interpret medical terminology in radiology reports is being developed, said Dr. William Mehan, a neuroradiologist.

An internal survey run after radiology results became immediately available to patients found that some doctors were monitoring their inbox after hours in case results arrived. “Burnout has come up in this conversation,” Mehan said.

Some electronic health records enable doctors to withhold test results at the time they are ordered, said Jodi Daniel, a partner at the law firm Crowell & Moring. Doctors who can do this could ask patients whether they want their results released immediately or if they want their doctor to communicate the result, assuming they meet certain criteria for exceptions under the rule, she said.

Chantal Worzala, a health technology policy consultant, said more is to come. “There will be a lot more conversation about the tools that individuals want and need in order to access and understand their health information,” she said.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Americans Reporting More Chronic Pain

By Pat Anson, PNN Editor

A startling new study has concluded that the prevalence of chronic pain has grown substantially in the United States since 2002, affecting virtually every age group, sex, ethnicity and demographic. By 2018, over half of American adults (54%) reported having pain, with each birth group in greater pain than the one that came before it.

“You might think that with medical advances we’d be getting healthier and experiencing less pain, but the data strongly suggest the exact opposite,” said co-author Hanna Grol-Prokopczyk, PhD, an associate professor of sociology in the University at Buffalo College of Arts and Sciences.

“We looked at the data from every available perspective including age, gender, race, ethnicity, education, and income, but the results were always the same: There was an increase in pain no matter how we classified the population.”

Grol-Prokopczyk and her colleagues analyzed responses from over 441,000 people who participated in the National Health Interview Survey (NHIS) from 2002 to 2018. While research on pain trends usually focuses on people over age 50, they look at adults aged 25-84. The data was analyzed for reports of joint, low back, neck, face or jaw pain, along with headaches and migraines.

The research findings, published in the journal Demography, show that pain increased for each body site during the study period, especially for joint, low back and neck pain. Reports of pain in at least one site increased by 10%, representing an additional 10.5 million adults experiencing pain.

SOURCE: DEMOGRAPHY

Not surprisingly, pain was most common in the oldest age group (65-84), with health problems such as high body mass index (BMI), hypertension, diabetes and kidney conditions correlating with increases in pain. Obesity was also associated with more pain in young and middle-aged adults, along with more stress and alcohol consumption.

“What we’re seeing in the younger age groups demonstrates how pain in some ways functions as much as a mental health problem as it does a physical health problem,” said Grol-Prokopczyk. “Pain can be exacerbated by stress, and stress can bring about alcohol use.”

Socioeconomic disparities are also involved. While pain increased for people in every income and education level, it rose faster for low-income Americans and those who never attended college.

“This study has documented steep, sustained, and pervasive increases in chronic pain among Americans across the adult life span. This is a concerning finding that should stimulate new research in demography and other social sciences. We found that key correlates of the rise in pain prevalence include not only specific diagnoses, such as arthritis, but also psychological distress, increased body weight, and heavier alcohol use -- factors that highlight the psychosocial roots of pain in populations,” researchers concluded.

Are Americans experiencing more pain or just reporting it more often? And what role, if any, did the opioid crisis play? The researchers found no definitive answers to either question, but they speculated that increased opioid use and awareness about pain may have led Americans to report pain more readily in the hope of getting it treated.

“Our findings in this study are not an argument for increased opioid use; in contrast, we posit that opioids may have contributed to the rise of pain prevalence in the United States,” they said.

That statement is puzzling, because opioid prescribing peaked in 2011 and has steadily declined ever since. The researchers apparently did not consider that more pain is being reported because it is often poorly treated or untreated.

A recent PNN survey of nearly 3,700 patients found that over 92% believe their pain levels and quality of life have grown worse. Over a third said they were unable to find a doctor to treat their pain and 58% said they were taken off opioids or tapered to a lower dose against their wishes.  

Chronic Pain Linked to Memory Loss in Some Older Adults

By Pat Anson, PNN Editor

A new study suggests that people who live with chronic pain may be at higher risk of memory loss and cognitive decline if they have lower levels of education, income and access to healthcare.

The study by researchers at the University of Florida, published in the Journal of Alzheimer’s Disease, involved 147 adults between the ages of 45 and 85 who had mild to moderate knee pain. Participants enrolled in the study were asked to provide sociodemographic information, complete an assessment of their cognitive function, and have MRI brain scans.

People with higher pain levels who had low levels of income and education, and less access to health insurance had about 4% less gray matter in the temporal lobe of their brains (the area shaded in blue) compared to people with low pain levels who had more income and education, and greater access to healthcare.

“As we get older, typically starting around our mid-50s to mid-60s, we lose about half a percent of our gray matter per year,” said lead author Jared Tanner, PhD, an assistant professor of clinical and health psychology in the UF College of Public Health and Health Professions. “So a 3-4% difference could be thought of as an additional six to eight years of aging in the brain.”

The thinning of gray matter is predictive of future cognitive decline and greater risk of developing dementia or Alzheimer’s disease.

Tanner and his colleagues have been investigating how chronic pain acts as a stressor that causes physiological changes in humans. Other researchers have found that Black adults are up to twice as likely as White adults to develop Alzheimer’s disease. The new findings indicate a variety of environmental factors might be involved, including access to healthcare.

“This study helps us begin to identify an additional factor to explore that may contribute to health disparities in rates of dementia and Alzheimer’s disease in some underrepresented ethnic/race groups. In this case, it looks like stage of chronic pain, along with other life experiences, may be playing a role,” said Tanner.

“The body and the brain are adaptive to stress to a certain point,” said senior author Kimberly Sibille, PhD, an associate professor of aging & geriatric research and pain medicine in the UF College of Medicine. “But with persistent stressors that are more intense and longer duration, eventually the body’s response is no longer adaptive and changes start occurring in the other direction, a process known as allostatic overload. 

“People with low pain stage — intermittent, low intensity, shorter duration and minimal sites of pain — differ from the groups with higher stages of chronic pain. Further, in combination with lower protective factors, including lower income, education and health insurance access, those individuals with higher chronic pain stage show less gray matter in cortical areas of the brain.”

A large 2017 study found that people aged 60 and older with chronic pain had faster declines in memory and cognitive ability than those who were not troubled by pain.

The brain may be able to regain some of its ability to function normally. A 2009 study of osteoarthritis patients showed a reversal in brain changes when their pain was adequately treated. 

Ideology Is Guiding Pain Care, Not Science

By Roger Chriss, PNN Columnist

An overarching question in pain management and the opioid crisis is whether or not prescription opioids have any value in treating chronic non-cancer pain. 

Some say that the answer is a resounding “No.” Studies to date on the effectiveness of opioids are often too small, methodologically weak or too short-term to be convincing. But these same studies are often used to claim lack of efficacy, and for the same reasons they cannot do that.

At present, we don’t know if or how well opioids work for chronic pain. To establish efficacy, we’d need major studies or clinical trials that run for years, using many hundreds or even thousands of patients. Opioids would need to be compared to placebo or other treatments for various forms of chronic non-cancer pain, from inflammatory and autoimmune conditions to neuropathies and genetic disorders.

Such studies have not been done. A U.S. government website that tracks clinical studies lists 685 trials for “opioids and chronic pain,” with several terminated or withdrawn, others just now recruiting, and only a handful completed. Many of these studies look at substance use disorders, tapering or de-prescribing, or are small-scale efforts at comparing two opioids.

There are no large-scale studies of opioids for chronic non-cancer pain getting started or underway at present.

There are over 14,500 studies on “opioids and chronic pain” listed in PubMed, a database maintained by the National Institutes of Health. One of the few that looked at long-term use of opioids is the 2018 SPACE study, which found that opioids were not superior to non-opioid medications over 12 months.

But the SPACE study has important limitations: It only looked at patients with chronic back pain or osteoarthritis of the hip and knee. Researchers also put the opioid tramadol in the non-opioid group and let some patients switch from the non-opioid to the opioid arm in order to achieve good analgesia.

Another study found that only one in five patients benefited from long-term opioid therapy, with young and middle-aged women showing the least improvement in pain and function. But this was a telephone survey that relied on a pain scale to assess outcomes, with no mention of diagnoses and no randomization or placebo control.

Similar studies with more positive outcomes can be found. According to a Cochrane review, the opioid tapentadol (Nucynta) worked better than oxycodone and a placebo in treating chronic musculoskeletal pain. But the clinical significance of this finding is uncertain.

In other words, we don’t have the kinds of studies we need to figure out if opioids work for chronic pain. This means that when people claim there is no good evidence for opioids in long-term pain management, they have a point. But for the same reason, there is no good evidence against opioid efficacy, either.

Of course, there is good evidence about opioid risks. As PNN reported, an Australian study found that people on long-term opioids do sometimes engage in risky behavior such as filling a prescription early. But this study didn’t find major risks of dose escalation, diversion or overdose that are often claimed to be common.

The solution would be to do major trials. But there seems to be little incentive to do this. The opioid crisis and associated ideological debate about drug legalization have combined with lawsuits and public health policy to remove any motivation to find out more about efficacy. The results of such a study could sway outcomes in the ongoing opioid litigation or ignite new lawsuits, or could even cripple advocacy groups on either side of the opioid divide.

There are, arguably, subtle incentives not to pursue high-quality clinical trials on opioids for long-term pain management. Instead, we’re seeing lots of meta-analyses, reviews, and retrospective studies, none of which is particularly convincing because summarizing old studies with known weaknesses generally cannot answer big questions.

For the foreseeable future, we may be stuck with ideology instead of science guiding clinical pain care.

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. 

Genetics May Explain Why Women Are More Likely to Have Chronic Pain

By Pat Anson, PNN Editor

It’s no secret that women are far more likely than men to experience fibromyalgia, migraine, osteoarthritis and other chronic pain conditions. Why that is has been linked to everything from gender bias in healthcare to childhood trauma to women “catastrophizing” about their pain.  

A new study published by UK researchers in PLOS Genetics suggests that part of the reason is genetic differences between men and women.

In the largest genetic study of its kind, researchers at the University of Glasgow looked for genetic variants associated with chronic pain in over 209,000 women and 178,000 men who donated their medical and genetic data to the UK Biobank.

The researchers also investigated whether the activity of those genes was turned up or down in tissues commonly involved with chronic pain.

They found that 37 genes in men and 30 genes in women were active in the dorsal root ganglion, a cluster of nerves in the spinal cord that transmit pain signals from the body to the brain.

The findings support previous work by the same research team, which found that chronic pain originates to a large extent in the brain, and to a lesser degree in parts of the body where people “feel” pain. The study also suggests genetic differences between men and women may affect the immune system and how the two sexes respond to medication.

“Overall, our findings indicate the existence of potential sex differences in chronic pain at multiple levels… and the results support theories of strong nervous system and immune involvement in chronic pain in both sexes,” wrote lead author Keira Johnston of the University of Glasgow. "Our study highlights the importance of considering sex as a biological variable and showed subtle but interesting sex differences in the genetics of chronic pain."

Gender Bias

While genetic differences may partially explain why women are more likely to feel pain than men, gender biases may explain why they are treated differently, according to another study recently published in the Journal of Pain.

Researchers at the University of Miami found that when volunteers observed male and female patients expressing the same amount of pain, they had a tendency to view female patients' pain as less intense and more likely to benefit from psychotherapy.

The study consisted of two experiments in which adult volunteers were asked to view videos of men and women who suffered from shoulder pain. The videos came from a database of real patients experiencing different degrees of pain, and included their self-reported pain levels when moving their shoulders in a series of exercises.

The volunteer observers were asked to gauge the amount of pain they thought the patients in the videos experienced. They were also asked how much pain medication and psychotherapy they would prescribe to each patient, and which of the treatments they thought would be more effective.

The study found that female patients were perceived to be in less pain than the male patients — even when they reported and exhibited the same pain levels. Researchers believe those perceptions were partially explained by gender-based stereotypes.

"If the stereotype is to think women are more expressive than men, perhaps 'overly' expressive, then the tendency will be to discount women's pain behaviors," said co-author Elizabeth Losin, PhD, assistant professor of psychology at the University of Miami.

"The flip side of this stereotype is that men are perceived to be stoic, so when a man makes an intense pain facial expression, you think, 'Oh my, he must be dying!' The result of this gender stereotype about pain expression is that each unit of increased pain expression from a man is thought to represent a higher increase in his pain experience than that same increase in pain expression by a woman."

The volunteer observers were also more likely to choose psychotherapy as a treatment than pain medication for the female patients.

Interestingly, the gender of the observers did not influence pain estimation. Both men and women interpreted women's pain to be less intense.

"I think one critical piece of information that could be conveyed in medical curricula is that people, even those with medical training in other studies, have been found to have consistent demographic biases in how they assess the pain of male and female patients and that these biases impact treatment decisions," said Losin.

"Critically, our results demonstrate that these gender biases are not necessarily accurate. Women are not necessarily more expressive than men, and thus their pain expression should not be discounted."

Study Finds Placebos Disrupt Pain Signals in Brain

By Pat Anson, PNN Editor

Much of the pain relief that a person gets from taking an analgesic medication is due to individual mindset, not the drug itself, according to new research that looks at how the human brain responds to a placebo.

The placebo effect is a well-documented but poorly understood condition in which a patient responds to a drug or treatment that is designed to have no therapeutic value. A 2018 study, for example, found that about half of patients who took a sugar pill they thought was an analgesic had a 30% reduction in pain – a level considered effective for an actual painkiller.    

To better understand how that is possible, researchers at Dartmouth University conducted a meta-analysis of 20 neuroimaging studies involving 603 healthy people who participated in placebo studies. Their findings, recently published in Nature Communications, showed that placebo treatments reduced pain-related activity in multiple areas of the brain.

"Our findings demonstrate that the participants who showed the most pain reduction with the placebo also showed the largest reductions in brain areas associated with pain construction," explains co-author Tor Wager, PhD, a Neuroscience Professor who is principal investigator of the Cognitive and Affective Neuroscience Lab at Dartmouth.

"We are still learning how the brain constructs pain experiences, but we know it's a mix of brain areas that process input from the body and those involved in motivation and decision-making. Placebo treatment reduced activity in areas involved in early pain signaling from the body, as well as motivational circuits not tied specifically to pain."

By examining brain images, researchers were able to identify the placebo effect in regions of the brain that process pain signals (nociception) and generate pain sensations.

They found that placebos strongly affect the thalamus, which processes sights, sounds and other types of sensory input; as well as the basal ganglia, which is important for motivation and pain-related activities.

Placebo treatments also reduced activity in the brain’s posterior insula, which is one of the areas involved in creating pain sensations. This suggests that placebos change the pathway for how pain is processed in the brain. 

"The placebo can affect what you do with the pain and how it motivates you, which could be a larger part of what's happening here," says Wager. "It's changing the circuitry that's important for motivation."

Previous research has found that placebos activate the brain’s prefrontal cortex, which triggers the release of natural, pain-relieving hormones that can block pain signals from being processed.

Researchers say placebo effects likely involve a combination of different brain reactions, depending on the placebo and people's predispositions. In other words, there is no uniformity in the placebo response because everyone is different.

"Our results suggest that placebo effects are not restricted solely to either sensory/nociceptive or cognitive/affective processes, but likely involves a combination of mechanisms that may differ depending on the placebo paradigm and other individual factors," said co-author Ulrike Bingel, PhD, a professor at the Center for Translational Neuro- and Behavioral Sciences at University Hospital Essen.

A 2016 study that looked at brain images of osteoarthritis patients found that about half had mid-frontal brain regions that had more connectivity with other parts of the brain, making them more likely to respond to the placebo effect. That could help could explain why some respond well to pain medication, while others do not.

Who Develops Intractable Pain Syndrome?

By Forest Tennant, PNN Columnist

It is clear that a small percentage of chronic pain patients can develop Intractable Pain Syndrome (IPS), which is constant, incurable pain that has cardiovascular and endocrine complications. But which unfortunate chronic pain patients will succumb to this fate?

To this end, we have been surveying persons with IPS to understand who they are and how they developed the syndrome. Without knowledge as to “who” and “how” IPS occurs, it will be impossible to either prevent the condition, identify it in early stages or stop its progression.

In a survey of persons with IPS, we found that many were older and primarily female. Out of 28 patients surveyed, 20 were female and 8 were male, and their ages ranged from 34 to 77 years. The average age was 56 years.

In addition, these individuals had been ill and experienced chronic pain for many years. Only two of the 28 patients surveyed reported pain of less than five years duration. The majority could actually recall the day, month and year that their chronic pain shifted to IPS. 

Almost all reported three major manifestations:

• 100% Physical function declined

• 86% Needed medication to sleep

• 82% Mental functions declined

Key laboratory tests were frequently abnormal:

• 71% Hormone abnormality

• 53% High inflammatory markers 

• 32% High glucose levels 

The 28 patients surveyed were asked what medical conditions caused their IPS. Surprisingly, the majority said they had multiple diagnoses, which are listed below by condition:

• 20 Adhesive Arachnoiditis

• 9 Ehlers-Danlos Syndrome

• 7 Cervical Neck Neuropathy

• 5 Osteoarthritis

• 2 Reflex Sympathetic Dystrophy (CRPS)

• 2 Interstitial Cystitis

• 2 Traumatic Brain Injury

• 1 Rheumatoid Arthritis

• 1 Stroke

These findings show that IPS can develop from a relatively small number of painful conditions, with Adhesive Arachnoiditis and Ehlers-Danlos Syndrome the most common ones reported. Persons with IPS almost all report severe insomnia and declines in their physical and mental abilities. And laboratory tests validate the abnormal physiological impact of their non-stop constant pain.

In a separate clinical analysis of 40 persons with IPS, we found that over 60% had symptomatic characteristics in common, from constant pain and difficulty sleeping to sugar cravings and cold hands and feet. For a list of over two dozen IPS symptoms, click here.

Our mission forward as the IPS Research and Education Project is to bring recognition and treatment of IPS to every community across the globe. This presents a great challenge for us; to instruct and inform all concerned parties in acknowledging that IPS is a serious syndrome, and that it is exceedingly different from what is commonly known as chronic pain.

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

New Society Launched to Advance Pain Research

By Gregory Carbonetti, Guest Columnist

“I live with layers of chronic pain,” writes Dr. Richard Hovey, a professor of dentistry at McGill University. Diagnosed with psoriatic arthritis and enduring lower back pain from a bicycling accident, Hovey also faces painful chemotherapy for advanced metastasized prostate cancer.

“The combination of these pain-inducing events presented significant life-changing challenges to retaining my sense of personhood,” Hovey wrote in a personal essay in the Journal of Patient Experience.

Many Americans may relate. Chronic pain is more prevalent in the U.S. than diabetes, coronary heart disease, stroke and cancer combined. It costs our economy some $635 billion a year in direct treatments and lost productivity.

These problems are exacerbated by the ongoing opioid epidemic, which claimed approximately 450,000 lives over the last two decades and stigmatized people who take prescription pain medication. The nation, and the world, lacks efficient and safe pharmaceutical treatments for pain.  

Thus, one might think a scientific and professional society comprising scientists, clinicians, healthcare providers and policymakers exists, working to reduce the burden of pain. There was such a group, the American Pain Society, but it filed for bankruptcy in 2019. This absence was rectified only this past December with the inaugural meeting of the United States Association for the Study of Pain (USASP).

The circumstances leading to the formation of this new organization underlie the importance of pain research in the United States, which scientific societies play a fundamental role in. They foster interdisciplinary collaboration among members; attract young investigators through early-career grants; work to increase policy impact and address social issues; and promote members’ personal and research integrity.

Scientific societies bring together diverse perspectives and translate knowledge into directives for action. The death of the old pain society and the birth of a new one illustrates the importance of transparency for societies of every discipline.

The now-defunct American Pain Society did some good work. It provided clinical guidelines for pain treatments, increased funding for research, and advocated for multidisciplinary care. But it became a victim of toxic philanthropy, tarnished by its connection to opioid manufacturers such as Purdue Pharma, which settled criminal and civil charges last year by agreeing to pay $8.3 billion for its role in the opioid crisis.

Purdue and other opioid manufacturers accounted for nearly $1 million of the American Pain Society’s $6.5 million in contributions between 2012 and 2017, according to a U.S. Senate committee report, and covered over 5% of the society’s expenses during those years.  

The American Pain Society wasn’t the only professional society accepting donations from opioid manufacturers. The Academy of Integrative Pain Management, which accepted approximately $1.3 million between 2012 and 2017, also dissolved in 2019 due to financial problems. While its focus was different, both societies shared members, and its loss was another setback.

For many pain researchers, clinicians and advocates, the American Pain Society’s demise meant losing important support for their work. These professionals soon had difficulty meeting with pain management leaders and experts in other sub-specialties and disciplines.

More Transparency Needed

Many members were stunned by what had transpired, unaware of the American Pain Society’s dependence on opioid manufacturers. According to the Pacific Standard, when the society’s contributions from opioid manufacturers began to dwindle, leaders never directly told members that fewer industry donations were contributing to their financial problems. 

The dissolution of the American Pain Society created a vacuum, and strategies to organize the USASP began. Forming the new society included a GoFundMe campaign to purchase the old society’s Journal of Pain through auction.

While membership in the USASP is similar to the American Pain Society, its leaders stress that they have learned valuable lessons, making the new constitution and expectations of leadership more transparent and talking with members about the role industry will hold. The USASP is committed to “values-based” decision-making.  

Creating a new society will not instantly end either the chronic pain crisis or the opioid crisis. Nor will it absolve certain players of their past errors. Nonetheless, this history should push other scientific societies to strive toward full transparency and remain in service to those they seek to help.

Dr. Hovey wrote of the transformation “that occurs as patients become people again and are awakened by the multitude of challenges that [lie] ahead of them.”

The formation of the United States Association for the Study of Pain is a significant moment for chronic pain research and for sufferers like Dr. Hovey. The work of rebuilding vital infrastructure for understanding and managing chronic pain, the invisible epidemic, begins anew.

Gregory Carbonetti, PhD, is a Civic Science Fellow at the Alan Alda Center for Communicating Science, working to more meaningfully connect science and research with diverse communities and our shared civic life.

This column 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.

Insurance Claims Show Lyme Disease More Widespread

By Pat Anson, PNN Editor

A new analysis of insurance claims by the Centers for Disease Control and Prevention suggests that Lyme disease may be far more widespread in the United States than current estimates.

CDC researchers looked at data from MarketScan, a large commercial insurance claims database, and found that Lyme disease diagnoses from 2010 to 2018 were six to eight times higher than the number of cases reported to a federal disease surveillance program.

Lyme disease is a bacterial illness spread by ticks. When left untreated, it can lead to chronic disorders such as fatigue, muscle and joint pain, cognitive issues and other symptoms that are often diagnosed as fibromyalgia, neuropathy and autoimmune disorders.

Most reported cases of Lyme disease occur in 14 states in the Northeast, mid-Atlantic and upper Midwest, especially during the summer months when more people spend time outdoors. Recent studies show Lyme is spreading to neighboring states and is no longer just a seasonal disease, possibly do to the effects of climate change.

The CDC analysis of insurance claims filed by nearly 23 million Americans identified over 140,000 people who were diagnosed with Lyme disease during the study period. That works out to a nationwide rate of 73 cases for every 100,000 people, a rate substantially higher than the 9 cases per 100,000 reported by the surveillance program.

“Age and sex distributions among Lyme disease diagnoses in MarketScan were similar to those of cases reported through surveillance, but proportionally more diagnoses occurred outside of peak summer months, among female enrollees, and outside high-incidence states,” wrote lead author Amy Schwartz, an epidemiologist in the CDC’s Bacterial Diseases Branch.

Schwartz and her colleagues say the larger number of Lyme cases reported by MarketScan may be the result of misdiagnoses, but the volume of claims warrant further investigation.

“Although Lyme disease diagnoses identified from claims data are not supported by the robust evidence of infection required for surveillance reporting, they are a consistent indicator of trends in the healthcare system. In addition, the sheer volume of data available through MarketScan provides potential for new insights into the epidemiology of Lyme disease diagnoses in the United States,” they said.

The CDC findings are similar to a 2017 analysis of insurance claims by the non-profit FAIR Health, which found an unexpected surge in Lyme disease cases during the winter and early spring.

Early symptoms of Lyme disease include fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes. A delayed rash often appears at the site of the tick bite. The rash grows in size and sometimes resembles a bulls-eye. Lyme disease is usually treated with antibiotics.

About 30,000 cases of Lyme disease are reported annually by state and local health departments to the surveillance program. The CDC acknowledges, however, that the actual number of cases is probably much higher and that about 300,000 Americans may become infected every year.

Serious Complications Caused By Poorly Treated Pain

By Forest Tennant, PNN Columnist

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

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

• High Blood Pressure (Hypertension)               

• Elevated Pulse Rate (Tachycardia)                             

• Elevated Cholesterol (Lipids)                       

• Arteriosclerosis  

• Angina Pectoris

• Cardiac Arrythmias

• Heart Attack

• Sudden Death

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

Calcium Complications

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

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

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

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

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

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

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

Does Chronic Pain Lead to Hoarding?

By Pat Anson, PNN Editor

People living with chronic pain often face stigmas in their daily lives. In addition to being unfairly labeled as drug seekers, pain sufferers are often perceived as lazy malingerers who use their pain as an excuse to stay home, avoid social activities and not work.

Unfair or not, there is some truth to the notion that people in pain are less active physically – and for some that’s led to compulsive hoarding, according to a new study at the University of Florida.

Researchers surveyed over 20,000 people about their hoarding habits and identified over 2,600 cases of “hoarding disorder,” a condition characterized by difficulty in parting with possessions because of a compulsive need to save them. These extreme hoarders were more likely to have chronic pain and other potentially life-shortening medical conditions such as obesity, diabetes, heart problems, high cholesterol and sleep apnea.

On average, compulsive hoarders were about 17 pounds heavier than people without the disorder. They were also more likely to be women, less likely to have a college degree, less likely to see a doctor, and more likely to suffer falls in their home. 

“Hoarding behaviors are associated with limited activity involvement, an increased risk of falls and difficulties with self-care — all of which likely contribute to substantial functional impairment and reduced physical well-being,” lead author Sara Nutley, a data analyst at University of Florida Health, reported in the Journal of Psychiatric Research. 

Hoarding disorder is more than just collecting or being unwilling to part with a few cherished mementos. The American Psychiatric Association says compulsive hoarders save everyday items that most people consider worthless and become emotional at the thought of getting rid of them. Hoarded items are often stored haphazardly, leading to clutter that causes health and safety issues and disrupts hoarders’ lives and living space.

Hoarding not only contributes to health issues, Nutley and her colleagues say medical problems like chronic pain can lead to even more hoarding.

“First, it is possible that profound functional impairment and low levels of health care utilization contribute to the progression of medical comorbidity among individuals with hoarding disorder,” they wrote. “Second, it is possible that individuals with existing medical conditions experience increased impairment in daily self-care activities that lead to the build-up of clutter.

“Medical conditions may worsen hoarding behavior and the underlying causes of hoarding behavior may be a risk factor for both hoarding disorder and medical morbidity.”

The Mayo Clinic says the treatment of hoarding disorder is difficult because many people don’t recognize the impact of hoarding on their lives. If hoarded items are removed, people become frustrated and angry, and start collecting again. The main treatment for hoarding disorder is cognitive behavioral therapy and medications to treat anxiety and depression.  

7 Ways to Treat Intractable Pain Syndrome

By Forest Tennant, PNN Columnist

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

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

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

1) Suppression of Inflammation

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

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

2) Sleep Restoration

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

3) Control of Electric Currents

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

4) Pain Control

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

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

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

5) Hormone and Neurotransmitter Supplementation

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

Hormones: DHEA, pregnenolone, testosterone, progesterone.

Neurotransmitters: dopamine-noradrenaline, serotonin, GABA.

6) Anabolic Measures (Tissue Building)

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

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

7) Disease Specific Exercise

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

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

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

Forest Tennant is retired from clinical practice but continues his groundbreaking research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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