The 'Nocebo Effect’ and Irritable Bowel Syndrome

By Dr. Caroline Seiler

Many people find that wheat or gluten cause them to react in some way: Some people have a wheat allergy, some have the autoimmune condition celiac disease, but the majority find they have some sort of intolerance or sensitivity to wheat and gluten.

This is challenging to diagnose because there still aren’t any reliable biomarkers to confirm gluten or wheat sensitivity, and clinicians typically rely on patient self-reports.

In irritable bowel syndrome (IBS), patients experience gastrointestinal symptoms without any visible damage to the digestive tract. Many patients with IBS believe that specific foods, like gluten or wheat, trigger their symptoms, prompting them to exclude these foods from their diets without consulting a dietitian or their doctor.

Unsurprisingly, about a third of IBS patients develop disordered eating habits and perceptions about food that may cause symptoms in and of themselves, such as orthorexia, or an unhealthy preoccupation with healthy eating. This may cause a “nocebo effect,” where patients experience symptoms due to their beliefs and expectations about a substance they assume is causing their issues but is actually inert — a “nocebo.”

As a nutrition researcher at McMaster University’s Farncombe Institute, I’m a member of a team that ran a clinical trial to find out whether wheat, gluten or a gluten-free nocebo caused symptoms in IBS. And the results were surprising: even though some patients experienced worse symptoms from gluten or wheat, they weren’t very different from the nocebo, with similar proportions of patients reacting to each.

These results are similar to other published studies. Identifying the true sensitivities for patients with IBS is a controversial research area, with some studies finding gluten avoidance to be beneficial versus others finding it to have no significant effect.

Researchers from the United Kingdom and the Netherlands published an innovative study from the Lancet medical journal. Patients with reported gluten sensitivity were divided into four groups: Two groups were given gluten-free bread, but one of these groups was told it contained gluten and one was told it didn’t. Two other groups were given bread that did contain gluten, with one group believing it was gluten-free and the other believing it contained gluten.

The results showed that the patients who ate gluten and were also told they were eating gluten had significantly worse symptoms than the other three groups.

Gluten Misinformation

Given the controversial evidence that not only gluten, but other wheat components like fermentable carbohydrates or immune-stimulating proteins, may exacerbate IBS symptoms, it’s possible for this hot topic to get blown out of proportion or taken out of context, contributing to nutrition misinformation.

All of these factors — that it is often diagnosed by excluding all other options, the significant psychological component, the division in the scientific community and clinicians who often discount patients’ experiences — make treatment difficult for patients with this disorder.

As a result, patients with IBS are often left to navigate conflicting online resources and test new diets to treat their symptoms. When researchers challenge patients with gluten, wheat or a nocebo, they rarely report the personalized results back to the patients and see how this information impacts patient behaviour.

At McMaster University, we wanted to see how presenting personalized nutrition information would affect our patients. After providing them with personal results about their gluten and wheat reactions, we followed up with patients after six months or more to see how this impacted their beliefs, behaviours and symptoms.

Again, we were in for a surprise! Patients largely kept similar beliefs about gluten, maintained a gluten-free diet and had consistent symptoms even after learning that most of them did not react to gluten or wheat. This begs the question: when people more generally learn new information that conflicts with an existing belief, what may help them to change accordingly?

Psychological Treatment

IBS has been long understood as a disorder of the gut-brain interaction. Psychological treatments are being increasingly investigated to minimize patient fears of foods, or nocebo effects, and to treat IBS symptoms more generally. At Harvard, a recent study found that exposure-based cognitive behavioural therapy (CBT) showed promise to improve IBS symptoms in five sessions with a nurse practitioner.

Similarly, CBT correlated with shifts in brain networks and the gut microbiome, or gut bacteria, that were also correlated with improvements in gastrointestinal symptoms. At the University of Calgary, virtually delivered yoga was highly feasible and helped improve symptoms for patients with IBS.

However, IBS is a complex disorder which may be exacerbated due to many different causes, and psychological treatment will likely be only one component of an effective treatment plan for many patients.

Diet plays an important role in human health, but how it does so — especially among those with gastrointestinal diseases — becomes complicated by the emotional aspects of eating and the real needs for people to have nutritious, well-balanced diets without risking malnutrition. If you have concerns that certain foods, like gluten, trigger your symptoms, it’s a good idea to consult your doctor or a registered dietitian.

Caroline Seiler, PhD, is a clinical researcher who studied at McMaster University in Ontario, Canada. She receives funding from the Canadian Institutes of Health Research.

This article originally appeared in The Conversation and is republished with permission.

Low-Carb Diets More Effective than Medication for IBS

By Pat Anson, PNN Editor

Diets low in carbohydrates are more effective than medication in treating irritable bowel syndrome (IBS), according to a new study that found over 70% patients had significantly reduced symptoms after changing their eating habits.

IBS is an intestinal condition that causes abdominal pain, cramps, bloating, gas and diarrhea. An imbalance in gut bacteria is suspected as a possible cause of IBS, and symptoms can be aggravated by stress or eating a large meal.

Researchers at the University of Gothenburg in Sweden enrolled over 300 people with severe or moderate IBS symptoms in a randomized clinical trial, dividing them into three groups.

The first group was given traditional IBS dietary advice, while also focusing on a low intake of fermentable carbohydrates, known as FODMAPs. Foods such as lactose, legumes, onions and whole grains were avoided because they are poorly digested, tend to ferment in the colon, and cause IBS pain.

The second group also had a diet low in carbohydrates, but high in protein and fat. In the third group, there were no dietary changes and laxatives, antidiarrheals, antibiotics and other medications were given based on the patient's symptoms. The treatment period for all three groups was four weeks.

The study findings, published in The Lancet Gastroenterology & Hepatology, show that 76% of participants in the FODMAP group had significantly reduced IBS symptoms. That compares to 71% of patients in the low-carb/high protein and fat group, and only 58% in the medication-only group. All three groups reported better quality of life, and less anxiety and depression.

Even after six months, when participants partially returned to their previous eating habits, a large proportion still had significant symptom relief: 68% in the FODMAP group and 60% in the low-carb/high protein and fat group.

“Although we found evidence that dietary treatments were more efficacious than medical treatment after 4 weeks, all three treatment options showed significant and clinically meaningful efficacy,” wrote lead author Sanna Nybacka, PhD, a researcher and dietician at the University of Gothenburg.

“The sustained positive effects of dietary interventions suggest their potential as first-line treatments for IBS, although patient preference, compliance, cost-effectiveness, and effects on nutritional status and the gut microbiota would need to be accounted for.”

Dietary advice for IBS typically includes sitting down during meals, chewing foods thoroughly, and avoiding excessive intake of coffee, alcohol, fizzy drinks, and fatty or spicy foods.

Foods low in FODMAPs include rice, potatoes, quinoa, and gluten-free pasta and bread, as well as a variety of vegetables, fruits, fish, beef and chicken.

Red Cabbage Juice Improves Gut Health

A new study by researchers at the University of Missouri found that juice from red cabbage can also improve gut health and ease inflammation in the digestive tract caused by Inflammatory Bowel Disease (IBD).

Symptoms of IBD and IBS are similar, but in IBD they become chronic, causing anemia, bleeding, weight loss and fever. About three million Americans live with IBD, including Crohn’s disease and ulcerative colitis.

In studies on laboratory mice with IBD, red cabbage juice relieved their intestinal inflammation. Mice are often used to study IBD because colitis in mice closely resembles ulcerative colitis in humans.

“Red cabbage juice alters the composition of gut microbiota by increasing the abundance of good bacteria, resulting in increased production of short chain fatty acids and other bacteria derived metabolites ameliorating inflammation,” said lead author Satyanarayana Rachagani, PhD, an Associate Professor of Veterinary Medicine & Surgery at the University of Missouri

“Its ability to modulate gut microbiota, activate anti-inflammatory pathways and enhance immune regulation underscores its potential as a valuable therapeutic agent for IBD and related inflammatory disorders.”

The study is published in the International Journal of Molecular Sciences.

Red cabbage juice is rich in antioxidants and Vitamin C, and has long been used as a natural remedy to reduce inflammation and improve overall health. It is also a good source of dietary fiber.

Patients With Irritable Bowel Syndrome Have High Rates of Fibromyalgia

By Pat Anson, PNN Editor

A large new study has found high rates of fibromyalgia in patients with irritable bowel syndrome (IBS), adding to a growing body of evidence linking gut bacteria to chronic pain disorders. IBS patients were also more likely to have chronic fatigue syndrome (CFS).

The study, recently published in the journal Biomedicines, looked at more than 1.2 million IBS patients hospitalized in the U.S. over a three-year period. They found that the prevalence rate of fibromyalgia in the IBS patients was 10.7 percent, about five times higher than the fibromyalgia rate (1.4%) in the general adult population.

Fibromyalgia is a poorly understood condition characterized by widespread body pain, headaches, fatigue, insomnia and mood disorders; while IBS causes abdominal pain, cramps, bloating, gas and diarrhea. Gut bacteria has been associated with both IBS and fibromyalgia, but the exact mechanism of action remains unclear.

“This is yet another example where ailments in the gut are linked to ailments elsewhere in the body and mind,” said senior author Yezaz Ghouri, MD, an assistant professor of clinical medicine and gastroenterology at the University of Missouri School of Medicine. “As we continue to learn more about how gut health effects health elsewhere it is important that clinicians look for and manage somatic comorbidities in IBS patients.”

Fibromyalgia and CFS are known as “somatic” disorders because patients who have them often experience anxiety and depression – a tendency perhaps explained about the lack of effective treatments for their physical symptoms.

“Because IBS patients have higher prevalence of somatic comorbidities such as fibromyalgia and chronic fatigue syndrome, identifying and treating these disorders can improve their quality of life,” said lead researcher Zahid Ijaz Tarar, MD, a fellow in the division of gastroenterology and hepatology at the University of Missouri School of Medicine.

“Earlier identification of comorbidities is valuable to inform treatment strategies, including consulting other specialties such as rheumatology and psychiatry to improve the overall health outcomes in IBS patients.”

In addition to fibromyalgia, the research team found that hospitalized IBS patients were also significantly more likely to be white and female.  Less than one percent (0.42%) had a CFS diagnosis – a small percentage to be sure, but still higher than CFS rates in the general population (0.06%).

The high rates of fibromyalgia and CFS in IBS patients has led to speculation that poor diets or antibiotics may cause an imbalance of “bad” bacteria in the gastrointestinal system, allowing toxins to leak into the bloodstream and cause other health problems.

A recent study found that Klebsiella aerogenes, a bacterium that causes white blood cells to produce excess amounts of histamine, can trigger a painful immune system response.

Another study found that women with fibromyalgia have strikingly different types and amounts of bacteria than those without fibromyalgia. Faecalibacterium prausnitzii, a “good” bacterium that is normally abundant in the human gut, was found to be depleted in fibromyalgia patients. Other bacteria associated with IBS, CFS and interstitial cystitis were found to be abundant in fibromyalgia patients, but not in the healthy control group.  

Gut Bacteria Identified as Cause of IBS

By Pat Anson, PNN Editor

Canadian researchers have identified one of the primary causes of Irritable Bowel Syndrome (IBS), a frustrating intestinal condition that causes abdominal pain, cramps, bloating, gas and diarrhea.

The culprit appears to be Klebsiella aerogenes, a strain of bacteria that causes white blood cells to produce excess amounts of histamine, a chemical that triggers a painful immune system response. Gut bacteria have long been suspected as a likely cause of IBS, but this is the first time a specific bacterial strain has been identified.  

Researchers at McMaster University and Queen’s University studied stool samples from both Canadian and American IBS patients, and found Klebsiella aerogenes in about 25 percent of them.

“We followed up these patients for several months and found high levels of stool histamine at the time when the patients reported severe pain, and low stool histamine when they were pain-free,” said senior author Premysl Bercik, MD, a gastroenterologist and professor at McMaster’s Michael G. DeGroote School of Medicine.

Further tests on laboratory mice that were colonized with gut microbes from IBS patients showed that several types of bacteria produced histamine, but Klebsiella aerogenes was a “super-producer.” The chemical is produced when histidine, an essential amino acid in animal and plant protein, is converted into histamine, triggering pain and inflammation.

“Now that we know how the histamine is produced in the gut, we can identify and develop therapies that target the histamine producing bacteria,” said first author Giada de Palma, an assistant professor of medicine at McMaster.

Researchers found that when mice colonized with histamine producing bacteria were fed a diet low in carbohydrates, histamine production dramatically decreased. That would explain the benefits of diets low in carbohydrates and high in dietary fiber, which are often recommended to IBS patients. Allergy medications that block histamine production may also be useful in treating IBS.

“Many but not all IBS patients will benefit from therapies targeting this histamine driven pathway,” said co-first author David Reed, assistant professor of medicine at Queen’s University.

The McMaster-Queens study was funded by the Canadian Institutes of Health Research and published in the journal Science Translational Medicine.

FDA Clears Ear Device for IBS Pain

By Pat Anson, PNN Editor

The U.S. Food and Drug Administration has cleared for marketing the first medical device to treat abdominal pain in patients 11-18 years of age with irritable bowel syndrome (IBS).

The IB-Stim device is made by Innovative Health Solutions and is only available by prescription. It uses neuromodulation to stimulate cranial nerves around the ear to provide relief from IBS, a condition affecting the large intestines that causes abdominal pain and discomfort during bowel movements.

The battery powered device is placed behind the patient’s ear — much like a hearing aid — and emits low-frequency electrical pulses that disrupt pain signals. It is intended for use up to three consecutive weeks.  

“This device offers a safe option for treatment of adolescents experiencing pain from IBS through the use of mild nerve stimulation,” said Carlos Peña, PhD, director of the FDA’[s Office of Neurological and Physical Medicine Devices.

The FDA reviewed data from a placebo controlled study published in The Lancet that included 50 adolescent patients with IBS. During the study, patients were allowed to continue using medication to treat their abdominal pain. Most had failed to improve through the use of drugs.

IB-Stim treatment resulted in at least a 30% decrease in pain after three weeks in 52% of the treated patients, compared to 30% of patients who received the placebo. Six patients reported mild ear discomfort and three had an allergic reaction caused by an adhesive at the site of application.

IMAGE COURTESY OF INNOVATIVE HEALTH SOLUTIONS

Innovative Health Solutions is not disclosing any details about the potential cost of an IB-Stim or where it will be available.

“We are still working to finalize our pricing structure,” Ryan Kuhlman, National Director of Innovative Health Solutions, said in an email. “There are many factors that go into the final contract price with a hospital and will likely vary from hospital to hospital. We do want to make this treatment available and affordable as we work towards favorable insurance coverage.”  

The FDA reviewed the IB-Stim through a regulatory pathway for low- to moderate-risk medical devices. Clearance of the device creates a new regulatory classification, which means that similar devices for IBS may be cleared if they are substantially equivalent to an approved device. Similar ear devices have been cleared by the FDA to treat symptoms of opioid withdrawal and for use in acupuncture.

IBS is a group of symptoms that include chronic pain in the abdomen and changes in bowel movements, which may include diarrhea, constipation or both. A 2018 study found that hypnosis relieves pain in about a third of IBS patients.

Can Hypnosis Help Relieve Chronic Pain?

By Pat Anson, PNN Editor

Two new studies suggest that hypnotherapy can relieve pain for some patients with irritable bowel syndrome (IBS), complex regional pain syndrome (CRPS) and other chronic pain conditions.

The first study, published in The Lancet medical journal, involved nearly 500 IBS patients who were recruited from 11 hospitals in the Netherlands. IBS is a common condition characterized by repeated attacks of stomach pain, cramps, diarrhea and constipation.

Study participants were randomly assigned to one of three groups: individual hypnotherapy, group hypnotherapy, or support sessions that included dietary advice and education about IBS.  The hypnotherapy sessions were designed to reduce pain and discomfort from IBS.

After three months, 41% of the people in individual hypnotherapy and 33% of those in group hypnotherapy reported adequate relief, compared to less than 17% of those in education and support sessions.   

The results from group hypnotherapy were even better after 9 months. Nearly half the patients in that group reported relief from IBS symptoms.

“The trial finding that hypnotherapy works better than educational support adds evidence to previous studies showing that hypnotherapy may have a helpful effect,” the UK’s National Health Service said in a review of the Dutch study. “The finding that group hypnotherapy works about as well as individual hypnotherapy is interesting, as this means many people could be treated by the same therapist at the same time, which could reduce waiting times and the cost of treatment.

“It also demonstrates that unfortunately, even with the best care, IBS can still be a difficult condition to treat. Half or more people receiving hypnotherapy still gained no symptom relief.”

Hypnosis and CRPS

Another hypnosis study, recently reported by Japanese researchers at the World Congress of Pain, involved 121 patients with refractory chronic pain – also known as intractable pain – who agreed to hypnotherapy either biweekly or in monthly 60 minute sessions. The patients all had chronic conditions that were difficult to treat, such as CRPS, phantom limb pain, neuropathic pain and cancer pain.

Researchers found that 71% of the patients reported pain relief during the hypnosis sessions. And for many of them, the analgesic effect continued after the session ended.

“These patients have all undergone multidisciplinary pain treatment, including medication, physiotherapy and CBT (cognitive behavioral therapy),” Miyuki Mizutani, PhD, a clinical psychologist at Aichi Medical University, told Pain Medicine News. “And ultimately, they did not respond completely to those treatments. So we believe the untreatable part of the pain can be treated by hypnosis.”

Hypnotherapy even works for patients with CRPS, although they often require more hypnosis sessions before having an analgesic effect.

“I’ve now been performing hypnosis for 18 years, and have found it very effective in those patients, though it can be difficult to administer in chronic pain,” Mizutani said. “It takes time, and complete remission is not very common. However, our experience is that repeated analgesic experiences can lead to long-term improvements in chronic pain.”

Vitamin D Supplements Could Ease Symptoms of IBS

By Pat Anson, Editor

A new study suggests that Vitamin D supplements may help ease stomach cramps, constipation and other painful symptoms of irritable bowel syndrome (IBS).

In a systematic review (a study of studies) involving hundreds of patients around the world, British researchers found that over half the patients with IBS had low levels of Vitamin D in their blood serum. Vitamin D supplements helped improve symptoms for some patients, although the findings were mixed.

"The available evidence suggests that low vitamin D status is common among the IBS population and merits assessment and rectification for general health reasons alone,” said Claire Williams of the University of Sheffield, lead author of the study published in the European Journal of Clinical Nutrition.

"An inverse correlation between serum vitamin D and IBS symptom severity is suggested and vitamin D interventions may benefit symptoms."

Williams and her colleagues cautioned that the evidence was not strong that supplements would help, and said larger studies were needed to build a case for Vitamin D as a treatment for IBS.

Britain’s National Health Service was also cautious about the findings.

“Although this possible link is worth investigating further, the evidence is currently very limited. The results seen in this study are an extremely mixed bag taken from studies of questionable quality," the NHS said in a review.

“The observational studies mainly just show that a number of these people with IBS also had a vitamin D deficiency. But you could select many other samples of people with IBS and find they have sufficient vitamin D levels, or other people who don't have IBS but who are vitamin D deficient.”

Both IBS and vitamin D deficiency are common in the western world. About 20% of adults in the UK are deficient in Vitamin D. Low levels of the “sunshine vitamin” have also been linked to fibromyalgia and multiple sclerosis. 

Most people get all the Vitamin D they need by being exposed to ultraviolet rays in sunlight. You can also get it by eating foods rich in Vitamin D, such as oily fish and eggs. Vitamin D has a wide range of positive health effects, such as strengthening bones and inhibiting the growth of some cancers.

Common Medical Conditions Linked to Fibromyalgia

By Lana Barhum, Columnist

People with fibromyalgia are more likely than others in the general population to have other chronic conditions. But doctors have yet to figure out why fibromyalgia often coexists with other diseases – what’s known as “comorbidity.”

Fibromyalgia sufferers often have migraines, autoimmune diseases, irritable bowel syndrome, depression, anxiety and sleep disturbances. Having multiple overlapping conditions isn’t easy, and increases physical pain and suffering. 

It is important for all of us with fibromyalgia to learn about these conditions and their symptoms.  Being knowledgeable about them will help us and our medical providers better control our symptoms, pain and overall health. 

Here are several common medical conditions faced by people who also have fibromyalgia:

Migraines:  Research indicates migraine sufferers are more likely to have fibromyalgia. One study from 2011, published in The Journal of Headache and Pain, suggests migraine headaches may even trigger fibromyalgia. Researchers believe preventing migraine headaches could potentially stop or slow down the development of fibromyalgia in some people, or minimize symptoms in fibromyalgia sufferers.

"These results suggest different levels of central sensitization in patients with migraine, fibromyalgia or both conditions and a role for migraine as a triggering factor for FMS. Prevention of headache chronification in migraine patients would thus appear crucial also for preventing the development of fibromyalgia in predisposed individuals or its worsening in co-morbid patients,” Italian researchers reported.

Autoimmune Diseases:  In about 25% of cases, fibromyalgia co-exists with an autoimmune condition, according to the Centers for Disease Control and Prevention.  Two serious autoimmune diseases that may accompany fibromyalgia are rheumatoid arthritis (RA) and lupus. 

Other studies show at least 20% of RA patients also have fibromyalgia, but researchers have yet to understand the connection. The pain of RA can trigger fibromyalgia flares, worsen pain and symptoms, and vice versa. 

In 2016, researchers in the UK tried to determine whether RA patients who also had fibromyalgia had lower levels of joint inflammation.  The results of their study, published in BMC Musculoskeletal Disorders, determined RA patients with fibromyalgia had "widespread soft tissue tenderness but fewer clinically inflamed joints, have higher disease activity scores but may have lower levels of synovial [joint] inflammation."

The researchers suggested that different approaches to treatment may benefit these patients.

"These patients are less likely to respond to escalation of inflammation-suppressing therapy and may be more suitable for other forms of treatment including alternative means of pain control and psychological support,” they wrote.

It is also not uncommon for lupus and fibromyalgia to co-occur.  However, fibromyalgia is no more common in lupus than other autoimmune diseases, according to researchers out of the National Data Bank for Rheumatic Diseases. 

Depression and Anxiety: People with fibromyalgia frequently experience depression and anxiety.

According to a 2011 report published in the journal Pain Research and Treatment, 90% of fibromyalgia patients have depressive symptoms at least once, and 86% of those people may suffer from a major depressive disorder. Depression and fibromyalgia occur at the same time in at least 40% cases -- a connection that researchers are still trying to understand.

The prevalence of anxiety symptoms in fibromyalgia patients ranges from 13% to about 71%,  according to Portuguese researchers. 

Irritable Bowel Syndrome: A majority of fibromyalgia patients – up to 70% - also suffer from irritable bowel syndrome (IBS), a digestive disorder characterized by abdominal pain, cramping, bloating, diarrhea and constipation.

Sleep Disturbances:  Most people with fibromyalgia report problems sleeping.  No matter how long they sleep, theyrarely feel rested. Restless leg syndrome, non-restorative sleep, and sleep apnea are all sleep issues associated with fibromyalgia.

People with fibromyalgia are more likely to have restless leg syndrome (RLS) than others in the general population, according to a study from the American Academy of Sleep Medicine (AASM). RLS is a disorder that causes uncomfortable feelings in the legs and/or the urge to keep moving the legs. The AASM study, published in the Journal of Clinical Sleep Medicine, finds 33% of people with fibromyalgia also have RLS.  

Up to 90% of fibromyalgia patients experience non-restorative sleep, a feeling of not getting refreshing sleep, despite appearing to have slept.

A 2013 study published in Clinical and Experimental Rheumatology reports that 61% of men with fibromyalgia suffer from sleep apnea, as well as 32% of women. Sleep apnea is a serious sleep disorder where breathing is interrupted during sleep.  

Living with Fibromyalgia and Co-Existing Conditions                 

In addition to suffering from fibromyalgia, I also suffer from three co-existing conditions -- rheumatoid arthritis, depression, and anxiety.  Having both RA and fibromyalgia, I have struggled with more severe symptoms, including muscle and joint pain and cognitive issues.  I know dealing with this debilitating pain results in both depression and anxiety, and both have been frequent visitors to my life.   

I am aware of the effect multiple conditions have on my well-being, and work hard at improving my overall health. I know I can still have a good quality of life, despite the many obstacles that fibromyalgia and its multiple co-occurring conditions present. 

There are other conditions linked to fibromyalgia that I have not mentioned, but they are still significant. Understanding how fibromyalgia and these conditions coexist may someday help researchers develop better treatments for fibromyalgia. 

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.

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

Pain Warrior: A Tribute to Sherri Little

(Editor’s note: This week marks the first anniversary of the death of Sherri Little, a 53-year old California woman who took her own life, after years of struggle with chronic pain and depression. Suicide is a difficult but important issue to address in the pain community, and our story about Sherri’s final days (“Sherri’s Story: A Final Plea for Help”) touched many readers. Tina Petrova was a friend of Sherri’s and wrote the following tribute to her.)   

By Tina Petrova, Guest Columnist

Sherri L. Little was a stunningly beautiful, diminutive blonde with sparkling, mischievous eyes. We became fast friends on Facebook, united by our common passion of pain patient advocacy.

She initially reached out to me after hearing that I had a film in development on chronic pain, saying, “Do I have a story for you!”

And indeed, she did.

Sherri was one of those rare people who could light up a room upon entering. She possessed charisma in spades and emanated a childlike wonder and joy.

SHERRI LITTLE

During the all too short time I knew Sherri, her key focus was advocating for pain patients, speaking up, and getting involved. Her search for treatments for her own painful conditions (occipital neuralgia, fibromyalgia and complicated IBS) took a back seat to her passion to help others.

I had the pleasure and honor of hosting Sherri in Toronto, Canada in May 2015. She made the long trek from Mexico where she was staying, to New York City to participate in the 2015 Caterpillar Walk for fibromyalgia, travelling onwards to me. 

SHERRI AND TINA PETROVA

I drove her around to my own treating doctors, hoping she could benefit from those who had greatly helped me. We filmed a short interview with her, which is to become a key centerpiece in our upcoming documentary.

It was Sherri’s final wish that we tell her story to the world.

Despite sleep deprived nights and painful days, she took delight in all the small activities I had planned during her stay with me, such as lunching at a vegetarian restaurant.

It surprised me that such small gestures could be so impactful for her, until she explained that her adult relationships thus far had not supported her pained life. She shared with me that she longed for deep, authentic connections.

Sherri was to return to Toronto in September 2015 to continue the interview process. Sadly, this was not to be.  

Sherri was found dead on July 7, 2015, after a July 4th weekend attempt to get medical help at a hospital in Los Angeles. Unable to eat and drink for four weeks, she had taken a solo train trip to L.A. from San Diego, hiring a patient advocate to champion her rights.

Her last ditch hope with faltering health was that she would gain access to the specialists and treatment she so badly needed to live her life with any quality. For reasons her family and I still cannot fathom or piece together, Sherri left the hospital and checked into a hotel room across the street, alone and in pain. We will never know for certain what transpired in those final hours.

Having a previous diagnosis of Clostridium difficile colitis and suffering from severe abdominal pain, she had been unable to keep food down for over a month and was existing solely on raw juices.

Her mom told me she had driven down to San Diego to take her daughter to the hospital on more than one occasion for horrible bowel pain and dehydration. After giving Sherri an IV drip in the ER, they released her home on each occasion.

In honor of Sherri’s courageous battle with chronic pain, we will be dedicating “Pandemic of Denial” to Sherri and her fight for better pain care for our community.

Sherri’s laughter will no longer echo in the halls of life, but I’m sure she’s busy keeping the angels on their toes in heaven with her loving heart and her shining soul of activism.

I can just see her high above us saying, “But you have to DO SOMETHING!”

And with that, we are. Sherri, you are loved and missed dearly.

Tina Petrova is an award winning filmmaker, pain patient and chronic pain activist.

Tina co- founded Give Pain A Voice in 2014 with Bob Schubring, to champion the rights of pain patients everywhere.

“Pandemic of Denial” is currently in production with plans for release in 2017. We have created a website to honor Sherri’s memory, which you can see by clicking here.

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.