Is Fibromyalgia Like a Software Problem?

By Lana Barhum

Earlier this year, the British Pain Society released an interesting study on the development of a new method to help doctors better communicate with fibromyalgia patients about their pain and symptoms. 

That narrative, which takes the unusual approach of comparing fibromyalgia to a software problem in a computer, is geared towards motivating patients to focus on exercise and other lifestyle changes, as opposed to pain medication.

"This study provides evidence that a framework incorporating a computer based analogy provides an acceptable story that helps FM (fibromyalgia) patients understand their illness and motivates them to engage in evidence based lifestyle adaptations that enhance recovery," wrote lead author Michael Hyland, PhD, a professor of Health Psychology at Plymouth University in the UK.

Fibromyalgia is a poorly understood disorder characterized by deep tissue pain, fatigue, depression, mood swings and insomnia. The exact cause of fibromyalgia is unknown.

Because the diagnosis of fibromyalgia is difficult and sometimes controversial, many patients struggle to communicate with doctors about their symptoms, pain and treatment. Studies have shown exercise and psychological intervention can improve fibromyalgia symptoms, but many patients feel their pain is best treated with medication. They are often surprised when their doctors suggest non-medicinal treatment options. 

The fibromyalgia narrative developed at Plymouth University is designed to minimize that misunderstanding and assist in communication between patients and their doctors.  It encourages doctors to present the body as “as ‘a very, very clever computer’ where fibromyalgia is caused by a software rather than a hardware problem.”

If there are issues in the software, the computer (the body) can be reprogrammed to correct them.  Essentially, patients are offered an explanation for why they are ill, why the doctor cannot find anything wrong, and what can be done to intervene. 

The narrative was developed with the help of 15 fibromyalgia patients.  The patients said the initial model created by researchers “worked poorly” and was ambiguous, so the researchers modified the narrative to make it more understandable. 

"Under certain identifiable conditions, the body creates ‘stop signals’ that prevent damage and promote recovery. These stop signals include pain, fatigue, nausea and dizziness. If, for whatever reason, the person is unable to respond to those stop signals – that is, they do not stop what they are doing – then over time the stop signals increase and become fixed, and the body is sensitized to anything that creates a stop signal,” wrote Hyland.  

The narrative also provided a basis for exercise and psychological help as ways to correct the body's software.

A second group of 25 fibromyalgia patients evaluated the new model during a 7 week “body reprogramming intervention,” in which they were taught about relaxation techniques, mood enhancement, exercise, diet and lifestyle changes. Only patients willing not to take medication were included.   

Most patients said the intervention was very useful, calling it believable, informative and hopeful. Many also said they had implemented lifestyle changes once they knew the benefits.

“Very informative and so refreshing to find answers to problems I’ve had for over 14 years and wonderful to be able to self believe ‘It’s not in my head’ as I’ve self-doubted so many times,” wrote one patient.

“This has been a revelation and has given our family ‘hope’ where we thought there was none,” wrote the mother of another patient. “This illness has not only affected my daughter but the whole of our family. We have spent years trying self help, but it felt like we were just stabbing in the dark.”

Hyland says hope is an important facet in finding solutions to chronic pain. 

"When patients have no explanation of their illness, they do not have a conceptual model of how and whether they will ever get better. Thus, providing patients with an illness narrative provides information not only about the route into the illness but also the route out,” he wrote.

Lana Barhum lives and works in northeast Ohio. She 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.

Few Differences in Fibromyalgia Between Men & Women

By Lana Barhum

Fibromyalgia is remarkably more common in women than it is in men, but when it comes to feeling its effects, there is little difference between the sexes, according to results of a new study published in the journal Pain Research and Management.

Fibromyalgia is a poorly understood disorder characterized by deep tissue pain, fatigue, depression and insomnia. As many as 90 percent of fibromyalgia cases are diagnosed in women.

The Al-Andalus Project consisted of 405 fibromyalgia patients and 247 non-fibromyalgia participants from southern Spain, the vast majority of them women. A significant limitation of the study is that only 73 men participated.

The researchers followed the groups for two years to see if gender-specific symptoms in the fibromyalgia patients existed. Participants were evaluated in several ways, including pain, lifestyle impact, fatigue, sleep issues, mental and emotional health, and cognitive performance.

In the fibromyalgia group, the men showed better working memory than women, whereas sleep latency (the length of time that it takes to go from full wakefulness to the lightest non-REM sleep state) was lower in the female participants. In the non-fibromyalgia group, the male participants showed higher pain thresholds in some areas, but not in others. 

The researchers found that some symptoms, including pain, in fibromyalgia men were worse than their non-fibromyalgia male peers. They believe the findings show that fibromyalgia might affect men more severely than women in tender point tenderness, mental health, and sleep latency, which contradicts earlier research on gender differences.

“Previous research has shown that fibromyalgia men present more severe limitations in physical functioning, social functioning, and health perception. However, we failed to find these differences between fibromyalgia women and men in the present study. Our results are consistent with other studies finding no gender differences in clinical key features in fibromyalgia," they wrote. 

It does still seem that the worst fibromyalgia symptoms, especially pain, affect females more severely than they do males, but the Al-Andalus researchers do not feel that is unique to fibromyalgia. 

"In the general population, women usually present greater pain sensitivity and lower pain threshold than men, which is in agreement with the results found in the nonfibromyalgia group of the present study," they wrote, noting that there is a difference in the way genders perceive and handle pain.

"It has been speculated that both peripheral and central nervous systems pathways might be involved in pain experiences; however, the mechanism underlying gender differences in pain remains misunderstood."

While the findings of the Al-Andalus Project do not support any significant gender differences in fibromyalgia and only offer some indication that fibromyalgia might affect men more severely with some symptoms, the researchers believe there’s a need to further understand why men and women perceive fibromyalgia pain and symptoms differently.

"Our results, then, suggest that fibromyalgia pain might be aggravated in men and, consequently, there might be gender-specific pain mechanisms in fibromyalgia," they said.

The Al-Andalus researchers believe further studies are needed that look at male and female fibromyalgia patients separately

“Given the low sample size of our sample, our findings should be interpreted as preliminary and future studies with a larger sample size of men might confirm or contrast the cut-off scores suggested in the present study," they wrote.

Lana Barhum lives and works in northeast Ohio. She 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.

Can You Color Away Pain?

By Pat Anson, Editor

You might call Mary Hayes a pioneer in adult coloring. Millions of people like her have discovered that coloring a complex floral or geometric design is a great stress reliever.

But Hayes also colors to relieve her pain.

“I can't do a lot of activities, so I wanted something to do that would keep my mind active,” says Hayes, who has suffered most of her life from fibromyalgia, migraines, fatigue and other chronic illnesses.

“I played video games and worked puzzles, but I got tired of that.  I realized I was losing part of my physical self when my mind was engaged. So I started coloring.”

Hayes says she got strange looks when she first started asking for adult coloring books in book stores. That was before the “coloring craze” took off – first in Europe and then the United States.

Today, many craft, hobby and book stores keep a wide selection of adult coloring books. One colorist has sold more than 20 million of her books worldwide.

“I think of coloring as my therapy.  I've been able to express the way my pain makes me feel inside in a way that I cannot express in words,” says Hayes. “It not only engages the mind, it engages the body by adding some movement that could be compared to a yoga-like experience.

“When I'm sitting there and coloring, I'm thinking about what colors I want to use and what medium I want to use.  Time moves past so quickly.  I look up at the time and realize I haven't taken a pain pill in hours and that is an amazing feeling.  I think in a way it ties the brain up so tightly, it stops all those pain signals from breaking through.” 

Coloring not only provides pain relief, it’s turned Hayes into artist. Beautiful and complex designs – like the one she colored below – can often take days to complete.

Hayes started connecting with other colorists on Facebook, which is where Jack Plaxe discovered her. Plaxe retired from the world of finance several years ago, formed a company called Color 4 Fun, and started publishing adult coloring books as an avocation.  

“I’m having a good time working with artists around the world creating these books,” Plaxe told PNN. “I don’t have pain, but I color and it’s very, very relaxing. It’s stress relieving.”

Plaxe noticed that many of the colorists he met online suffer from chronic pain, which gave him the idea of publishing his latest book, Color Away the Pain. It features the artistry and personal stories of Hayes and four other colorists who suffer from chronic pain and illness.

“Many of them use coloring as a form of therapy for distraction from their pain. So I’m well aware of the benefit of coloring for people who are pain sufferers,” says Plaxe.

“We color our soul onto those pages.  We can run and be active in colors.  We can express our spirit and self with our personal style.  We are defined by our coloring style and not our disability,” says Hayes. 

“It feels so good to have someone tell someone about my artistry and not my disability.  I can show my work and not have to talk about my latest treatment.  Those things don't disappear, but they are not what defines me anymore.  I found out I have a real talent that I never knew existed.”

To see more of that talent and those of other artists, click here, here or here.

To find the hidden artist in yourself, you can buy a copy of Color Away the Pain from Amazon for $7.95. All royalties from sales of the book will go to the Chronic Pain Research Alliance.

Plaxe also has a Facebook page that offers free advice and instructional videos for beginners.

Color Away the Pain is featured along with several other pain-related books in PNN’s new “Suggested Reading” section.

Daughter Says Untreated Pain Led to Mother’s Suicide

By Pat Anson, Editor

Suicides are never easy to accept. Especially if they involve a loved one. Even more so if they could have been prevented.

Lacy Stewart says her mother never would have killed herself if she’d been given proper medical care for her chronic fibromyalgia pain.

“I feel angry about the way she was treated,” says Stewart, a registered nurse who believes the healthcare system not only failed to treat her mother, but drove Marsha Reid to suicide at age 59.

“Her life was taken from her is the way I feel,” says Stewart. “I know it was. A person can only handle so much pain for so long. It takes its toll on every area -- your mind, your body, everything. And she just couldn’t do it anymore. She’d had enough. Because nobody would help her. Nobody.” 

Stewart says her mother was fit and physically active – handling all the chores at her 10-acre farm in north Texas -- until she slipped on ice and landed hard on her face in 2009. Reid broke a few teeth and sustained nerve damage in the fall -- injuries that evolved into the classic symptoms of fibromyalgia: chronic widespread pain, anxiety, fatigue, insomnia and depression.

“Of course she sought out help. Searching for doctors that would take her on, she encountered road block after road block. Many doctor’s offices would just flat out say, ‘We don’t take fibromyalgia patients,’” recalls Stewart.

“So you take that and couple it with the fact that pain medication is often required for these patients and now the CDC has regulations that deter a physician from wanting to prescribe pain medication at all and you end up here. Zero help for a woman suffering day in and day out for all these years. She lost her job, her home, her independence.”

MARSHA REID AND DAUGHTER LACY

In January, Reid checked into a hotel room and tried to kill herself by taking a full bottle of Xanax. The failed suicide attempt left Reid even more depressed and her health deteriorated further. She started having hallucinations, hearing voices and seeing dead people.

In July, Stewart drove her mother for five hours to see a pain management doctor.

“I was appalled at the treatment from the physician. We explained the pain and the issues with her mind, and he said he could only treat one or the other. Not both! Not the whole patient! When I brought up pain medication you would have thought I had asked him for heroin,” says Stewart.

“I'll never forget the conversation I had with him in the hall on the way out. I looked him in the eye and said the pain is so severe she will kill herself! It’s only a matter of time. He basically said his hands were tied because of the regulations and what I was asking was for him to lose his license! I was furious and felt betrayed by the field I loved, medicine.”

One treatment was suggested for her mother.

“They wanted her to go to water aerobics,” said Stewart. “The woman could barely take a bath and they wanted her to go to water aerobics! I read in the CDC (opioid) prescribing guidelines that they wanted doctors to use alternative measures for pain relief such as water aerobics and physical therapy. They never spent a day in pain in their lives, obviously. Because then they would know that is ridiculous. It’s almost a joke to me, the guidelines that I have read.”

Crisis in Pain Care

In recent months, Pain News Network has been contacted by dozens of pain patients who say they are contemplating suicide. It’s not just the difficulty in getting opioid pain medication. The growing crisis in pain care has reached a point where many patients are unable even to get a doctor’s appointment.

“I have been on a wait list for pain treatment for a year now. I am suffering needlessly and am questioning my ability to be able to live like this much longer,” said Isabel Etkind, a Connecticut woman who suffers from severe arthritis pain.

“I don't want to die but I can't live like this either. I know that many other people are experiencing the same thing, but knowing that does not really help! It is inhumane and cruel to treat people this way. If I were a dog, cat or horse, the animal rights people would be all over it, but torturing humans is OK. As is usually the case, the elderly, the military and the poor are suffering the most.”

Another woman, who suffers from chronic back pain, asked that we not use her name. She works in the emergency room of a hospital in southern California that recently adopted a policy of not prescribing opioids unless all other pain treatments have failed.

“Since November 1, we have seen a huge increase in overdoses from street drugs. Nearly all of these patients are chronic pain sufferers who are now getting their medications off the streets. A 33-year old fibromyalgia patient died from fentanyl overdose this week,” she wrote to PNN. “I understand the desperation these patients feel and try to educate the ER doctors about chronic pain from a layman's point of view. This new effort to stigmatize and demonize chronic pain sufferers has got to stop!

“We have full time jobs, pay mortgages, raise families. All this, while in levels of pain that normal people couldn't handle. We hate having to be chained to pill bottles and doctors and pharmacists. What other choice do we have? Curl up and die? I hope the new Trump administration will appoint people to DEA and CDC who will think of us as humans and help us instead of hurting us.”

Suicides Increasing

According to the CDC,  suicides increased by 24 percent from 1999 to 2014, and are now the 10th leading cause of death in the United States.  

In 2014, nearly 43,000 Americans killed themselves, three times the number of deaths that have been linked to prescription opioid overdoses.  

Marsha Reid died of a self-inflicted gunshot wound on November 2, leaving behind a grief stricken daughter who will always wonder if things would have turned out differently if her mother had gotten the pain treatment she needed

“She talked about this a lot, about suicide. That was her plan. She couldn’t deal with this much longer. And that’s what breaks my heart the most is that I was unable to help,” says Lacy Stewart.

“Just mention the heartache she has left behind. Because if another fibromyalgia patient is out there contemplating this and they come across this story, I want it noted that I lost my mom forever and I’m 32 years old. And I’ll never have her back.”

MARSHA REID

Researchers Discover ‘Brain Signature’ for Fibromyalgia

By Pat Anson, Editor

Researchers at the University of Colorado Boulder have discovered a “brain signature” that identifies fibromyalgia with 93 percent accuracy, a potential breakthrough in the diagnosis and treatment of a chronic pain condition that five million Americans suffer from.

Fibromyalgia is a poorly understood disorder characterized by deep tissue pain, headaches, fatigue, anxiety, depression and insomnia. The cause of fibromyalgia is unknown and there is no universally accepted way to diagnose or treat it.

The CU Boulder researchers used MRI scans to study brain activity in a group of 37 fibromyalgia patients and 35 control patients, who were exposed to a series of painful and non-painful sensations.

The researchers were able to identify three neurological patterns in the brain that correlated with the pain hypersensitivity typically experienced with fibromyalgia.

UNIVERSITY OF COLORADO BOULDER

"The potential for brain measures like the ones we developed here is that they can tell us something about the particular brain abnormalities that drive an individual's suffering. That can help us both recognize fibromyalgia for what it is - a disorder of the central nervous system - and treat it more effectively," said Tor Wager, director of CU Boulder’s Cognitive and Affective Control Laboratory.

If replicated in future studies, the findings could lead to a new method to diagnosis fibromyalgia with MRI brain scans. Patients who suffer from fibromyalgia have long complained that they are not taken seriously and have to visit multiple doctors to get a diagnosis.

"The novelty of this study is that it provides potential neuroimaging-based tools that can be used with new patients to inform about the degree of certain neural pathology underlying their pain symptoms," said Marina López-Solà, a post-doctoral researcher at CU Boulder and lead author of a study published in the journal Pain. "This is a helpful first step that builds off of other important previous work and is a natural step in the evolution of our understanding of fibromyalgia as a brain disorder."

One patient advocate calls the use of MRI brain scans a breakthrough in fibromyalgia research.

"New cutting-edge neurological imaging used by CU Boulder researchers advances fibromyalgia research by light years," said Jan Chambers, founder of the National Fibromyalgia & Chronic Pain Association. "It allows scientists to see in real time what is happening in the brains of people with fibromyalgia. 

"In fibromyalgia, the misfiring and irregular engagement of different parts of the brain to process normal sensory stimuli like light, sound, pressure, temperature and odor, results in pain, flu-like sensations or other symptoms.  Research also shows that irregular activity in the peripheral nervous system may be ramping up the central nervous system (brain and spinal cord).  So the effect is like a loop of maladjustment going back and forth while the brain is trying to find a balance.  This extra brain work can be exhausting." 

The theory that fibromyalgia is a neurological disorder in the brain is not accepted by all. Other experts contend it is an autoimmune disorder or even a “symptom cluster” caused by multiple chronic pain conditions. And some doctors still refuse to accept fibromyalgia as a disease.

One company has already developed a diagnostic test for fibromyalgia – and it’s not a brain scan. EpicGenetics has a blood test that looks for protein molecules produced by white blood cells. Fibromyalgia patients have fewer of these molecules than healthy people and have weaker immune systems, according to the founder of EpicGenetics. But critics have called the blood test “junk science” that is backed up by little research.

Is Fibromyalgia Caused by Childhood Trauma?

By Pat Anson, Editor

An article in a peer-reviewed medical journal that promotes a “new way of thinking” about chronic pain – and its possible ties to childhood trauma -- is stirring some controversy in the fibromyalgia community.

In the article, published in The Journal of Family Practice, co-authors Bennet Davis, MD, and Todd Vanderah, PhD,  say there may be “psychological reasons” for chronic pain that is not caused by tissue injuries or damage to the nervous system – what they call a “third type of pain.”

“We hypothesize that this pain may be the consequence of changes in nervous system function that arise from developmental trauma, other traumatic experiences in a patient’s life, or mental health disorders. It is this third type of pain that may offer us insights into conditions such as fibromyalgia,” they wrote

Davis and Vanderah say the third type of pain can be recognized when a patient makes an “emotionally charged presentation” that they are in severe pain when there is no physical evidence of tissue injury or pathology.

Where then does the pain come from? Davis and Vanderah say childhood accidents, trauma and abuse are so emotionally upsetting that they can lead to long-term changes in the central nervous system that amplify pain.

“We believe that these changes lead to a bias toward hyperactivation of emotional pain circuits, which leads to the emotionally laden pain behaviors that often seem out of proportion to tissue pathology,” they said.

“Perhaps this will explain what is happening with some of our patients who complain of pain ‘all over’ and who are often classified as having fibromyalgia.”

Fibromyalgia is a poorly understood disorder that is characterized by deep tissue pain, fatigue, depression, mood swings and insomnia. The exact cause of fibromyalgia is unknown.

Article Called "Dangerous"

Are Davis and Vanderah onto something? Or is their theory simply a new variation of the “it’s all in your head” explanation that many patients get from doctors?

“This article is dangerous,” says Jan Chambers, President of the National Fibromyalgia and Chronic Pain Association. “The slippery slope created by this article for a quick shove-off of patients with fibromyalgia generally to a psychiatrist or psychologist for talk therapy is very concerning.

“Singling out childhood psychological trauma without rigorous research as a ‘third type of pain’ and potential cause of fibromyalgia is dangerous because this could become an easy reason for medical doctors to further dismiss pain patients with challenging treatments from their care or withhold needed medical treatments or prescriptions. Additionally, other medical conditions could go undiagnosed with their symptoms attributed to being a psychological aspect of childhood trauma.”

Chambers says research has found that about 70 percent of people with fibromyalgia have neck pain – and many also have a history of whiplash-type injuries – indicating there is a physical explanation for fibromyalgia.

“When people receive appropriate care and spinal rehabilitation for their cervical spine, their fibromyalgia symptoms significantly reduce,” Chambers said in an email to PNN. “Several prominent fibromyalgia researchers have known this for years but have not convinced medical doctors to recruit chiropractors to help alleviate the suffering of their patients with fibromyalgia who have significant neck or low back pain.”

Another patient advocate disputes the notion that chronic pain is linked to childhood trauma and abuse.

“We would be hard pressed to find anyone who hasn't experienced psychological trauma at some point in their life,” says Celeste Cooper, a retired nurse and fibromyalgia sufferer.

“So, are we to assume they will all have multiple sclerosis, nerve impingement, Ehler's Danlos, CRPS, fibromyalgia, myofascial pain syndrome, Crohn's disease, chronic fatigue, cancer, etc.? Childhood trauma is a horse of a different color and should be left to those who specialize in this type of care. I cannot connect the dots on that one. Mental illness should be addressed by a trained psychiatrist and psychologist, not someone treating adult chronic pain.” 

Davis is a pain management specialist at the Integrative Pain Center of Arizona in Tucson, while Vanderah is a Professor of Pharmacology at the University of Arizona.

Davis said he developed his theory about the connection between childhood trauma and fibromyalgia after listening to thousands of patients’ stories. He believes there is a connection between emotional and physical pain that every doctor needs to understand.

“The nervous system is the connector between tissues and mind/consciousness, and every health provider needs to understand the nervous system to do their job, especially primary care providers,” Davis wrote in an email to PNN. “The artificial separation of mind and body represents a paradigm that has led the American health care system to multiple dead ends (including a dead end in understanding fibromyalgia), to misdiagnoses, to unnecessary surgeries and tests, to accusing patients that ‘it’s in your head’ when it most definitely is not, and has contributed to nearly bankrupting our health care system.”

How would Davis and Vanderah evaluate and treat fibromyalgia? If a physical cause of the pain cannot be found, they recommend doctors look for signs of “psychologically traumatic experiences” in patients, and assess them for anxiety and depression.

Recommended treatments include counseling, cognitive behavioral therapy, hypnotherapy, post-traumatic stress disorder therapies and anti-depressant medications such as Cymbalta (duloxetine) and Effexor (venlafaxine). Interestingly, they do not recommend any type of pain medication – either opioids or over-the-counter pain relievers.

“Above all, when you are caring for someone who has pain without clear tissue pathology or who has recognized intensified emotional pain processing, reassure the person that the pain experience is not in his or her head, but rather in his or her nervous system,” they said. “Such discussions go a long way toward helping patients understand their experience, as well as feel validated. And that can lead to improved compliance with therapy going forward.”

The Journal of Family Practice is delivered to nearly 100,000 family physicians, general practitioners and osteopaths in primary care.

Many Multiple Sclerosis Patients Misdiagnosed

By Pat Anson, Editor

Multiple Sclerosis (MS) is a chronic disease that attacks the body’s central nervous system, causing pain, numbness, difficulty walking, paralysis, loss of vision, and fatigue. Patients diagnosed with MS face enormous physical, emotional and financial challenges coping with a disease that cannot be cured.

Many also discover that they don’t actually have MS.

A new study published in the journal Neurology looks at 110 patients who were incorrectly diagnosed with MS when they actually suffered from more common and treatable conditions such as migraine and fibromyalgia.   

One third of the patients were misdiagnosed for a decade or longer, most took unnecessary and potentially harmful medication to treat a disease they didn't have, and some even participated in clinical trials for experimental MS therapies.

About a third suffered from “unnecessary morbidity” – morbid thoughts of death.

"Misdiagnosis of MS is common; patients may experience common MS symptoms, such as numbness and weakness with a variety of different conditions, many that are more common and less serious than multiple sclerosis," says the study's senior author Brian Weinshenker, MD, a neurologist at Mayo Clinic.

"With the advent of treatments for MS, many physicians feel pushed to reach an early diagnosis, and may be less strict than they should in requiring more specific symptoms or objective neurological findings before making a diagnosis of MS.”

Unlike other chronic illnesses, there is no specific biomarker or blood test for MS. The nerve damage caused by MS is also associated with a wide range of symptoms, many of which are also caused by other conditions such as Lyme disease, lupus, fibromyalgia, and Vitamin B12 deficiency.

Some diagnostic tests for MS, such as magnetic resonance imaging (MRI), can also be misinterpreted.

“Nonspecific MRI abnormalities that can mimic those of MS are very common in healthy individuals, and widespread use of MRI as a diagnostic tool increases the rate of misdiagnosis," said Weinshenker.

The 110 patients included in the study were identified by MS subspecialist neurologists at Mayo Clinic, University of Vermont, Washington University and Oregon Health & Science University.

Twenty two percent of the misdiagnosed patients actually had migraine; 15% had fibromyalgia; 12% had a nonspecific condition flagged by an abnormal MRI; 11% had a conversion or psychogenic disorder; and 6% had neuromyelitis optica spectrum disorder.

"This study suggests significant and long-term unnecessary risks for these patients," said lead author Andrew Solomon, MD, a neurologist at the University of Vermont College of Medicine. "While there may be different reasons for misdiagnoses by subspecialists and nonspecialists, this study suggests that we all make mistakes, and I think we can all do better.”

A previous survey of MS specialists found that more than 95% had seen at least one patient in the past year that was misdiagnosed with MS by another provider.

Some treatments for MS carry serious side effects. One drug, taken by 13 percent of the misdiagnosed patients in the current study, can cause a potentially fatal brain infection. Other patients suffered from the discomfort and inconvenience of daily injections; others experienced side effects from medications or lacked treatment for the conditions they actually had.

There are also enormous financial costs involved. The cost of medications to treat MS in the United States now exceeds $50,000 a year.

"Premature diagnosis of MS should be avoided," says Weinshenker. "When in doubt, physicians often can defer a diagnosis if it is not clear that there is a serious neurological problem or if a patient is stable. Physicians should request a second opinion when they are unsure but concerned that it might be harmful to delay a definitive diagnosis of MS."

Weinshenker and Solomon hope their study will encourage better education of clinicians on the proper use of MS diagnostic criteria and to further studies on how to recognize patients incorrectly diagnosed with MS.

‘Wakeup Call’ for Neurontin Abuse

By Pat Anson, Editor

A drug that is often prescribed as an alternative to opioid pain medication is increasingly being abused by patients, according to a small study that found one out of five patients taking the drug illicitly.

Gabapentin – which is sold by Pfizer under the brand name Neurontin -- is approved by the Food and Drug Administration to treat epilepsy and neuropathic pain caused by shingles.

It is also prescribed “off-label” for a variety of other conditions, including depression, migraine, fibromyalgia and bipolar disorder.

In a study of urine samples from 323 patients being treated at pain clinics and addiction treatment centers, 70 patients were found to be taking gabapentin without a prescription.

“The high rate of misuse of this medication is surprising and it is also a wakeup call for prescribers. Doctors don’t usually screen for gabapentin abuse when making sure patients are taking medications, such as opioids, as prescribed. These findings reveal that there is a growing risk of abuse and a need for more robust testing,” said Poluru Reddy, PhD, medical director of ARIA Diagnostics in Indianapolis, IN. Reddy presented his study at the annual meeting of the American Association for Clinical Chemistry in Philadelphia.

Researchers found that of those patients taking gabapentin illicitly, over half (56%) were taking it with an opioid, about a quarter (27%) with an opioid and muscle relaxant or anxiety medication, and the rest with other substances. The urine samples came primarily from pain clinics in Indiana, Arizona, and Massachusetts.

“Little information exists regarding the significance of Gabapentin abuse among clinical patients. Until recently, it was considered to have little potential for abuse however this review has shown that a significant amount of patients are taking Gabapentin without physician consent. This could be due to the fact that recent studies have revealed that Gabapentin may potentiate the ‘high’ obtained from other central nervous system acting drugs,” wrote Reddy.

"Patient safety is Pfizer’s utmost priority.  We strongly support and recommend the need for appropriate prescribing and use of all our medicines," a spokesperson for Pfizer said in an email to Pain News Network.

Gabapentin is not scheduled as a controlled substance and when taken alone there is little potential for abuse. But when taken with other drugs, such as opioids, muscle relaxants, and anxiety medications like Valium and Xanax, researchers say gabapentin can have a euphoric effect.

Between 2008 and 2011 the number of emergency room visits for misuse or abuse of gabapentin increased by nearly five times, according to the Drug Abuse Warning Network. Side effects from gabapentin include weight gain, dizziness, ataxia, somnolence, nervousness and fatigue.

Increased Prescribing of Gabapentin

A report by IMS Health found that 57 million prescriptions for gabapentin were written in the U.S. in 2015, a 42% increase since 2011.

Gabapentin is one of several medications being promoted by the Centers for Disease Control and Prevention as a "safer"  alternative to opioids.  The American Pain Society recently recommended that gabapentin be considered for post-operative pain relief.

But the growth in gabapentin prescribing is drawing scrutiny in the UK, where the Advisory Council on the Misuse of Drugs (ACMD) recommended earlier this year that gabapentin and pregabalin (Lyrica) be reclassified as Class C controlled substances, which would make them harder to obtain.

“Both pregabalin and gabapentin are increasingly being reported as possessing a potential for misuse. When used in combination with other depressants, they can cause drowsiness, sedation, respiratory failure and death,” said Professor Les Iverson, ACMD chairman, in a letter to Home Office ministers.

“Pregabalin causes a ‘high’ or elevated mood in users; the side effects may include chest pain, wheezing, vision changes and less commonly, hallucinations. Gabapentin can produce feelings of relaxation, calmness and euphoria. Some users have reported that the ‘high’ from snorted gabapentin can be similar to taking a stimulant.”

Gabapentin is "one of the most abused and diverted drugs” in the U.S. prison system, according to Jeffrey Keller, MD,  the chief medical officer of Centurian, a private company that provides prison healthcare services.

“Inmates show up at my jails all the time with gabapentin on their current medication list,” Keller wrote in Corrections.com. “It produces euphoria, a marijuana-like high, sedation, and, at high enough doses, dissociative/psychedelic effects. It works so well that it is used in the drug community to mellow out methamphetamine tweaking and to cut heroin. Since drug abusers know about these illicit uses of gabapentin on the streets, once they get to jail they often view gabapentin as an obtainable ‘jail substitute’ for their preferred drugs.

“Unfortunately, the abuse potential of gabapentin is not recognized much outside of jails and prisons. Community prescribers are generally unaware that gabapentin can be misused and (in my experience) are often incredulous and even disbelieving when told about ‘the dark side’ of gabapentin.”

Gabapentin (Neurontin) has a checkered history. Originally developed as a nerve drug, Pfizer agreed to pay $430 million in fines to resolve criminal and civil charges for illegally marketing Neurontin to treat conditions it was not approved for. According to some estimates, over 90% of Neurontin sales are for off-label uses.

In 1999, a Pfizer executive was so mystified by Neurontin’s popularity he called it the “snake oil of the twentieth century.”  

Two Drug Combo More Effective for Fibromylagia

By Pat Anson, Editor

Two drugs commonly prescribed for fibromyalgia – Lyrica and Cymbalta – are more effective in treating the disorder when used together, according to a new study by Canadian researchers.

Lyrica (pregabalin) is an anti-seizure nerve drug, while Cymbalta (duloxetine) works primarily as an anti-depressant. Both have been used for years to treat fibromyalgia -- a poorly understood disorder characterized by deep tissue pain, fatigue, insomnia, and mood swings. Until now no one has studied how effective the two drugs could be when used in combination.

"We are very excited to present the first evidence demonstrating superiority of a duloxetine-pregabalin combination over either drug alone," said lead author Ian Gilron, MD, Director of Clinical Pain Research at Queen’s University in Kingston, Ontario.

“The results of this trial suggest that combining pregabalin with duloxetine can safely improve outcomes in fibromyalgia including pain relief, physical function and overall quality of life.”

This was a small study – only 41 fibromyalgia patients participated – and the researchers admit that larger trials are needed to see if the results can be replicated. The new research was published in the journal Pain.

The study is the latest in a series of clinical trials -- funded by the Canadian Institutes of Health Research -- which Gilron and his colleagues have conducted on combination therapies for chronic pain conditions. By studying promising drug combinations, they hope to show physicians how to make the best use of current treatments.

"The value of such combination approaches is they typically involve drugs that have been extensively studied and are well known to health-care providers," says Gilron.

Patients in the study were divided into three groups that either took pregabalin alone, duloxetine alone or a combination of the two for six weeks. Doses were gradually increased in the study to the maximum tolerated dose. When used in combination, patients could only tolerate relatively low doses of pregabalin and duloxetine, suggesting the drugs have an overlap effect when used together.

“The pharmacological diversity of a pregabalin-duloxetine combination is a mechanistically appealing feature that increases the likelihood of additive analgesic actions although there could similarly be some additive adverse effects with this combination. Even at significantly lower doses during combination therapy, superior global pain relief during combination therapy would suggest a greater additive effect for pain reduction than for side effects,” said Gilron.

The biggest side effect of the pregabalin-duloxetine combination was drowsiness, and the researchers admit that reduced physical activity caused by drowsiness could have contributed to pain reduction. 

Patients have long complained of other side effects from pregabalin and duloxetine when used separately, such as weight gain, nervousness, and brain fogginess. Many have also reported severe withdrawal symptoms and “brain zaps” when trying to get off the drugs. The study apparently didn’t address those issues. 

Lyrica (pregabalin) is one of Pfizer’s top selling drugs and generates over $5 billion in revenue annually. In addition to fibromyalgia, Lyrica is approved by the Food and Drug Administration to treat chronic pain associated with epilepsy, shingles, diabetic peripheral neuropathy, and spinal cord injury. The drug is also prescribed “off label” to treat lumbar spinal stenosis, the most common type of lower back pain in older adults.

Cymbalta (duloxetine) generated sales of $5 billion for Eli Lilly until its patent expired in 2013 and cheaper generic versions of duloxetine became available. Cymbalta is approved for fibromyalgia, neuropathy, osteoarthritis, depression and anxiety.

Only one other medication – Savella – is approved by the FDA for fibromyalgia, but it is not as widely used as the other drugs.

Fibromyalgia was initially thought to be a musculoskeletal disorder, but research now suggests it's a disorder of the central nervous system - the brain and spinal cord. Researchers believe that fibromyalgia amplifies painful sensations by affecting the level and activity of brain chemicals responsible for processing pain signals. It affects twice as many women as men.

My 50 Years with Chronic Pain

By Carol Hansen, Guest Columnist

I am a 71 year old woman living with chronic pain.  When I was in my 20’s I started having severe migraine headaches, at least two per month.  It was hard to do anything. They lasted at least 3 days, leaving me wiped out!

I also cared for my grandparents in my home until they died. My grandmother also had migraines when she was younger.  She shared with me that when I got older my headaches would go away and she was correct.

I had some aunts that had fibromyalgia, which at that time no one knew what it was.  I knew my grandmother’s pain level was high, because she was on opiates.  Her doctor gave her a high dose so she was hooked on these medications. 

Doctors used to prescribe a lot of pain medication, thinking that was all they could do for pain patients. Even then they did not want to deal with us. I was always afraid of pain medication because I observed my grandmother’s life.  After my grandparents passed away our lives naturally changed.

We enjoyed time with our young family.  Still my migraines were very hard on me and fibromyalgia slowed me down.  Yet I still had bluebirds and was a Sunday school teacher, along with a full schedule helping teachers and caring for my children.

In 1981, I was trying to start the heater in our camper when the camper blew up, leaving me with third degree burns. The company that repaired our camper had left all the gas lines disconnected.  More stress, and we filed a lawsuit.  This added to my migraines and my fibromyalgia was very painful.

In 1983, my wonderful husband died leaving me with teenagers.  My body reacted in what I thought was an unusual way.  I felt as if I couldn’t stay still. I had to be moving all the time and at night sleep didn’t come.  This went on for at least two years, while increasing fibromyalgia pain. 

After my husband died I felt that if I had a business it might help me through the grief.   After much thought I started a small business, it is now 30 years old with multi-layered experiences.  Because of my unique business I was asked by two magazines to write a monthly article which I did. 

My church asked me to lead a group and host a family of 7 immigrants (boat people from Vietnam). I was in charge of them for several years.  As much as I loved the family, I had to use tough love and slowly stopped helping them to let me go and begin their own lives, as families should.  Knowing this family is a wonderful story that added happiness to our lives. I did all this through my pain.

My neck was so bad I was losing the use of my left arm. There was more pain and it was getting harder to deal with my business.  During this time I met a second wonderful man.  We saw each other for 6 years before we married. 

I saw a doctor about my neck pain.  When the camper exploded, I hit the back of my neck on the counter edge.  I didn’t know at first that I had hurt my neck because the burns were so bad.  My neck had a dent in the vertebrae’s and was collecting calcium deposits. Over time I ended up having three surgeries on my neck.  They couldn’t get all the calcium out because it was too close to the spinal cord and I could have been paralyzed.

Right after one of the surgeries I ended up back in the hospital with mononucleosis and hepatitis.  It made healing much harder and the pain became chronic along with fibromyalgia.  I saw a rheumatologist in Seattle.  We tried Lyrica and Cymbalta, but I had terrible side effects. 

I was asked to take part in a University of Washington fibromyalgia study that lasted several months.  I roller skated 4 miles around Green Lake every day. I was in great shape and was doing this through all the pain. I tried biofeedback and swimming twice a week.  I also have a TENS machine, but that only helps while you’re on it. 

I tried everything to help the pain.  My rheumatologist recommended I take oxycodone three times a day.  They helped me but it was not a time release so it would not decrease pain evenly.  When OxyContin became available, my doctor suggested I try it. I now take OxyContin three times a day.  He also gave me the oxycodone for breakthrough pain.  I started this program in the early 1990’s and have been on the same dose ever since, never asking for more or stronger medication.  It helps control about 75% of my pain.  Sometimes I forget to take the medication and I hurt a lot.  This medication is not addicting like the pills my grandmother took.  I am not addicted, I am dependent!

I have had several other surgeries, including two that failed.  One surgery was on my left foot and the doctor left my foot deformed; he is no longer practicing.  In 2013 I had a total knee replacement and it was a complete failure. I have problems going up and down stairs, and it is now my biggest pain area.  I am also diabetic and have osteoarthritis in my hands and hips. 

My pain is very chronic, there is no way to exercise or do other things recommended by the CDC. I’ve already tried them. The pain medication is the only relief I will ever have.

In 2001, we moved from Seattle to northern Idaho.  No doctor there wanted to deal with a new pain patient, so we were traveling 800 miles round trip back to Seattle every 3 months. Then my doctor retired. The doctor that replaced him left for another clinic because he didn’t want to deal with my doctor’s patients.  The doctor that took his place said she would not prescribe pain medication.  I got a letter saying they did not want me as a patient – even though I was a great patient staying with the same doctor for many years. In fact, they kicked out ALL pain patients from that clinic!

I did eventually find a pain clinic near us. So far they are keeping me on the same program as my retired doctor had me on.

The CDC, FDA and the Obama administration are telling doctors to take pain medication away from us. They are lumping pain patients in with addicts and causing horrible problems.  Doctors don't want to deal with us. Whatever happened to "Do No Harm"? 

Carol Hansen lived in Idaho. She invites people to learn more about chronic pain by reading "Opioid Epidemic Myths" and this Petition2Congress.

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

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.

Lasers Work for Fibromyalgia, But Why So Pricey?

By Ryan Baker, Guest Columnist

I’ve had severe fibromyalgia for 14 years, and I’ve been disabled as long. Without a doubt, the pain is certainly a central issue, along with the severe fatigue, flare ups, and crashes.

It’s an absolutely miserable disease that’s intrusive and destructive. I broke commitments that really shouldn’t be broken, which put a strain on personal relationships. The pain is a level of suffering that can easily push one to insanity or worse.

I found laser therapy last October at my chiropractor’s office, where they have a $25,000 K-Laser. While it worked great, I could not get enough coverage all over my body as often as I needed, and it was just too expensive for office visits.

I was getting good results, so I dove into trying to find a laser I could use at home, and settled on a very effective unit for $2,500. Pricey, but worth the convenience of having one I could use whenever I wanted.

Since receiving the TQ Solo laser in late January, I have not taken any prescription pain pills. My hydrocodone, methocarbamol, and Klonopin, which I had whittled down long before the laser to “emergency use only” (once every 3-7 days), have gone untouched since I’ve had the laser.

I have taken 2 ibuprofens for a dehydration headache, but no other OTC meds, aside from vitamins. I take a sleep aide and blood pressure medication, that’s it.  

TQ SOLO LASER

It still astonishes me how well laser therapy works. I still suffer from fibro fog, low energy, and all of the other problems associated with fibromyalgia, but my pain levels have dropped from a constant 7-9 out of 10, to a much more tolerable 2-4. I use the laser between 20 minutes to an hour or more a day, and rather than become resistant, my body seems to respond better after getting used to treatment.

Some areas are completely free of pain at times, which hasn’t happened in 14 years, but if I stop treatment the pain returns. It’s not a cure, my fibro is still terribly limiting, but it’s an amazing treatment for the pain. The decrease in my personal suffering has been outstanding.

The laser is like an alarm clock for under active mitochondria, only stimulating the cells in need. Properly functioning tissue (not in pain) have little to no response, while damaged or inflamed tissue “wake up” and begin healing. Some areas need daily treatment, like my calves and back, while other areas can go days between treatments.

If you’re a fan of science fiction, this is the coolest thing since the smartphone made Captain Kirk’s communicator look silly.

I find the 5 hertz setting, the deepest setting, to be the most beneficial. It’s like a massage, but deeper, and there’s no pain from working tender tissue. In fact, there is very little sensation during treatment. If I can feel the treatment at all, it’s usually a mild tingle or twitch, which I consider a signal to treat more intensely.

The laser does not hurt or burn. It’s very comfortable and soothing, and treating before bed is fantastic for sleep. I don’t wake up with that stiff, poisonous feeling ache anymore.  

I began researching all sorts of red light therapy. I’ve tried several, along with some LED only therapies. I even tried a heat lamp. While the heat lamp and LED therapies felt okay, they were no match for the laser.

While searching for other light therapy devices, I found the Handy Cure. It has a striking resemblance to the TQ Solo I had purchased, but it was selling for under $600. Same frequency settings, same power, same everything. Only the handle was different, as far as I could tell.

I looked it up, and it was made by the same company that makes the TQ Solo. But why so much cheaper? Was it a knock off? Was it less potent, or somehow lower quality? I put an order in.

After using the Handy Cure side by side for weeks with the TQ Solo laser, I can’t tell any difference. It’s just as effective. I’d overpaid by $2,000. I’m not wealthy, and I assume most fibro patients aren’t either, so that hurt.

I started looking into other lasers and found the Game Day laser. It looks exactly like the Handy Cure, no doubt about it, only the labels were different. Instead of variable, 50 hertz, and 5 hertz, the menu is a simple 1, 2, and 3. It appears to me that the Game Day is simply a rebadged Handy Cure.

handy cure laser (left) and TQ solo laser(right)

You’d think the Game Day would be priced more like the Handy Cure, but it’s listed for $2,995! My jaw dropped when I saw that, but the picture became crystal clear. All of these lasers had the same manufacturer and, except for subtle differences, appear to be essentially the same products.

But one sells for under $600 and the other is marked up to nearly $3,000. Why?

I’m not against the profit motive, but I am when people are suffering and treatment is unnecessarily kept out of reach.   

One month later, I have become a distributor for the Handy Cure, making YouTube videos to bring laser therapy to the attention of fellow fibromyalgia patients. It’s been a big adjustment, but a meaningful one. I have no idea what I’m doing, I just know lasers work, and they take some of the “crazy” out of fibromyalgia.

Fibromyalgia pain is real and physical, not some form of hypochondria or mental illness. If it was, the laser would have no physical effect. But it works reliably for my pain, even when I’m particularly depressed.  

I feel vindicated, because something finally works for the pain when powerful opiates barely made a dent. It’s not in my head. 

(Editor's note: Since this article was first published, Pain News Network has been contacted by Max Kanarsky, President and CEO of Multi Radiance Medical, the maker of the Handy Cure laser. Mr. Kanarsky maintains that the "Handy Cure" featured in this article is a counterfeit reproduction of his product, is not FDA cleared, and "might present a hazard to users.")

Ryan Baker lives near Sacramento, California. You can learn more about laser therapy by visiting his website, Chronic Pain Laser.

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

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.

Lyrica Linked to Birth Defects

By Pat Anson, Editor

A drug widely prescribed to treat fibromyalgia, neuropathy and other chronic pain conditions increases the risk of major birth defects, according to a new study published in Neurology, the medical journal of the American Academy of Neurology.

Women taking pregabalin were six times more likely to have a pregnancy with a major defect than women who were not taking the drug, the study found. The birth defects included heart defects and structural problems with the central nervous system (CNS) or other organs. Birth defects due to chromosomal abnormalities were not included in the results.

Pregabalin is the generic name of Lyrica, which is approved by the FDA to treat diabetic nerve pain, fibromyalgia, epilepsy, post-herpetic neuralgia caused by shingles and spinal cord injury. It is also prescribed “off label” to treat a variety of other conditions. Lyrica is Pfizer’s top selling drug, generates over $5 billion in annual sales, and is currently approved for use in over 130 countries.

The international study involved nearly 700 pregnant women in seven different countries. Four of the 125 women who took pregabalin during pregnancy had children with central nervous system defects, or 3.2 percent. That compares to a birth defect rate of just 0.5% in the 570 women who did not take pregabalin.

Of the women taking pregabalin, 115 were taking it to treat neuropathic pain, 39 were taking it for psychiatric disorders, including depression and anxiety, five were taking it for epilepsy, and one for restless leg syndrome.

Most of the women started taking pregabalin before they became pregnant. All of them stopped taking the drug at an average of six weeks into their pregnancies.

A small number of women also took another anti-seizure drug during their pregnancy. Women in that group had a 6 percent chance of a major birth defect, compared to 2 percent of the women who did not take another anti-seizure medication.

“We can’t draw any definitive conclusions from this study, since many of the women were taking other drugs that could have played a role in the birth defects and because the study was small and the results need to be confirmed with larger studies, but these results do signal that there may be an increased risk for major birth defects after taking pregabalin during the first trimester of pregnancy,” said study author Ursula Winterfeld, PhD, of the Swiss Teratogen Information Service and Lausanne University Hospital in Lausanne, Switzerland.

“Pregabalin should be prescribed for women of child-bearing age only after making sure that the benefits of the drug outweigh the risks and after counseling them about using effective birth control. In cases where women have taken pregabalin during pregnancy, extra fetal monitoring may be warranted.”

A spokesman for Pfizer said the study was small and the findings could have been influenced by other factors.

"As the authors agree, the study has significant limitations and cannot be used to draw definitive conclusions," Steven Danehy said in an email to Pain News Network. "The study was small, did not account for other medical conditions or medications, and the women taking Lyrica had higher rates of smoking and diabetes, all of which can negatively affect pregnancy outcomes."  

Because women are more likely than men to have a chronic pain condition such as fibromyalgia, they are the biggest consumers of Lyrica.

The FDA warning label for Lyrica does not specifically warn pregnant women not to take the drug. But it does caution them to consult with a doctor if they are pregnant or plan to become pregnant.

“It is not known if Lyrica will harm your unborn baby. You and your healthcare provider will have to decide if you should take Lyrica while you are pregnant. If you become pregnant while taking Lyrica, talk to your healthcare provider about registering with the North American Antiepileptic Drug Pregnancy Registry,” the label says.

The label also cautions men to see a doctor if they plan to father a child while taking Lyrica. 

“Animal studies have shown that pregabalin, the active ingredient in Lyrica, made male animals less fertile and caused sperm to change. Also, in animal studies, birth defects were seen in the offspring (babies) of male animals treated with pregabalin. It is not known if these problems can happen in people who take Lyrica,” the warning label states.

Changing Attitudes about Doctors

By Emily Ullrich, Columnist

Over the six years I've dealt with chronic pain, doctors' attitudes toward me have changed. My attitude toward them has also changed, unfortunately, for the worse.

It changed because my experiences with doctors changed. Those of you who have been dealing with chronic illness for a significant time will likely know exactly what I mean. At first, we are a challenge. They want to see if they can figure out what the last doctor could not. They want to help us.

But, when they see that we are not getting better and that the only thing that they can do is manage our symptoms, their attitude changes. This is particularly true for those of us with multiple diagnoses.

I started with pelvic pain. I had a compassionate primary care doctor and, at the time, there was not such hysteria surrounding opioid pain medicine. He did his best to manage my pain and sent me to a pelvic pain specialist.

The pelvic pain specialist gave me hope. He let me know that it was not all in my head and that he felt we could make progress. He was honest and told me that we may not be able to eliminate the pain, but he was confident that we could get it down to a level with which I could live.

He tried many different treatments over the years and things only got worse. Finally, I suggested something. And it worked. He isn't happy to see me anymore.

As time progressed, I began to develop more symptoms and more potential diagnoses. I read about six books on fibromyalgia and knew that I had it. I brought this information to my primary care doctor, who laughed at me. He told me he “did not believe in fibro.” I argued that clearly it was something that affected enough people that it was worth considering.

Reluctantly, he referred me to a neurologist, who confirmed my suspicions. I later read in my primary care doctor's notes that “she is convinced she has 'fibromyalgia.'” This made me furious. I could feel his condescending tone.

Almost every visit with my doctor, he would prescribe some new medicine (which I now know he was getting kickbacks from, because they were always the meds he had samples of). I was on a constant roller coaster of side effects, systemic agitation, and withdrawal. He changed or suddenly took me off different antidepressants, benzodiazepines, and other meds regularly. When I complained that the meds where making things worse, he became increasingly frustrated with me.

As my new ailments continued to pile up, the help I was getting began to taper down. I was angry, depressed, confused, and losing hope by the minute. Then, I read this letter from a doctor and this article by another doctor, both expressing frustration in dealing with pain patients. They made sense. Although they weren’t helpful to my health, they did explain what was happening to me with doctors.

I am a very strong-willed woman. I have a booming voice, I am confident in my intelligence and research. I come to doctor's appointments prepared and I ask questions until I get an answer I am satisfied with. I thought that most of these things were characteristics of a “good patient.” It turns out, they're not. They are things that intimidate and annoy doctors.

So, I tried to tone it down a bit. I still came prepared and well-informed about my ailments, but tried to soften by voice and approach. Instead of forging forward with my thoughts, I started to try to make doctors feel they were the ones who came up with ideas for treatment.

I felt like a phony. And it really wasn't helping in the overall picture. Doctors “liked” me better, but I didn't get what I wanted out of them.

My multitude of ailments has continued to accumulate for years. All of it seems to have been kicked off by episodes of malaria, amoebiasis (a parasite infection) and typhoid fever when I was in Kenya. I returned to the U.S. and my health hasn't been the same since. I and many of my healthcare providers suspected a connection, but I've never been able to get too far with that theory.

What I have realized is that fighting to get diagnosed with fibromyalgia was not the answer I had hoped for. In fact, it was an excuse for doctors who can't find an answer of their own. Lately, no matter what I'm suffering from, there are three possible diagnoses: fibromyalgia, irritable bowel syndrome or the fact that I take opioids.

I can almost count on it. After a doctor tries one or two treatment approaches, and I don't respond in the way they hoped or within a time frame that is considered “normal” (which, by the way, I NEVER do), it's because I take pain medicine, have IBS or fibromyalgia.

Most recently, after multiple hospital admissions with acute upper abdominal pain and vomiting (and even after a test showed ampullary stenosis, scarring of the pancreas, and reoccurring episodes of pancreatitis) the doctor still did not want to “label” me with chronic pancreatitis. Instead, he decided it is because I have IBS or fibromyalgia. After I argued about those diagnoses, the doctor settled on “narcotic bowel syndrome.”

Once you reach a certain number of diagnoses, it's like they check out. I can feel it. When they see me coming, they begin to put off a vibe of annoyance and distrust. It's heartbreaking. I need them. I need to be given a fair shot. But they don't want to deal with me. I'm too complicated.

On top of it all, I’m told I read too much. More than one doctor has said, “Stop reading.”

It’s as though they want me to just trust everything they say and never challenge it. That would be nice. I wish I could. But how can I, when they use my need for pain medicine or my pre-existing diagnoses as a crutch?

Emily Ullrich suffers from CRPS/RSD, Sphincter of Oddi Dysfunction/Papillary stenosis, carpal tunnel syndrome, endometriosis, chronic gastritis, Interstitial Cystitis, uterine fibroid tumors, migraines, fibromyalgia, osteoarthritis, Periodic Limb Movement Disorder (PLMD), Restless Leg Syndrome (RLS), Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and IBS.

Emily is a writer, artist, filmmaker, activist, and has even been an occasional stand-up comedian. She now focuses mainly on pain patient advocacy as a delegate for the International Pain Foundation, as she is able.

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.

Sherri’s Story: A Final Plea for Help

By Pat Anson, Editor

“I’ve been thinking about ending my life if I don’t get the help I need.”

Those are chilling words for anyone to hear. And in the last two years of her life, Sherri Little said them often to family, friends and doctors.  After decades of struggling with chronic pain from fibromyalgia, inflammatory bowel disease, severe colitis and other conditions, the 53-year old California woman was desperate and depressed when she checked into the emergency room at Cedars-Sinai Medical Center in Los Angeles on July 3, 2015.

What happened over the next four days is not entirely clear, but we know that Sherri took her own life. Her body was found in the bathtub of a hotel room across the street from Cedars-Sinai on the morning of July 7, with several prescription bottles and an empty bottle of wine nearby. Sherri had been sober for many years.

“I attest this is the first drink of alcohol in 16 years -- just to give me the courage to end my life alone,” Sherri wrote in a suicide note found in her hotel room.

“Several documents found inside the location underscored her pain, suffering and suicidal ideations,” reads the coroner’s report. “A check of the decedent’s laptop also contained a pictured document written by the decedent titled ‘Why I Killed Myself’ by Sherri Little.”

We’re telling Sherri’s story --- with the help of her mother, friends and patient advocate – not in a ghoulish attempt to recreate her final days, but to lend a name, a face and a voice to the untold number of chronic pain sufferers who have also been overwhelmed by pain, depression and loss of hope.  Like Sherri, many felt abandoned by a healthcare system that was unwilling or simply unable to treat them.

sherri little

Over 42,000 Americans killed themselves in 2014 according to the CDC, but experts believe the actual number is higher. Many suicides go unreported or are misclassified as accidental, covered up by grieving family members or accommodating medical examiners.

Sherri’s death was no accident, but it’s taken several months for her mother to come to terms with it.

“I’ve got to get her story out there,” said Lynda Mannion, Sherri’s mother. “She got to the point in the last year or so she could hardly eat solid food at all. She was just drinking her nutrition. I guess she must have lost 20 to 30 pounds in the last year.

“She would say, ‘I can’t go on living like this. If I can’t get some help, if somebody doesn’t believe me, I just can’t go on living like this.’ She didn’t seem to be extremely afraid of dying, considering the alternative, living with the pain she was in. But I never expected her to do it.”

A few months before she died, Sherri gave an interview to Tina Petrova in Toronto for a soon-to-be released documentary called Pain Warriors. 

“Sherri Little and I first became 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 I was producing on chronic pain and said, ‘Do I have a story for you!’ And indeed, she did,” says Petrova.

In this short clip, Sherri doesn’t talk about suicide and appears hopeful about her future.

But just weeks later, Sherri wrote the following in an email to Petrova:

“I was acutely suicidal last night after being verbally abused by a doctor who can't even get me any pain relief anymore,” said Sherri. “In a last ditch effort to save my life I am going to Cedar Sinai ER in LA with my patient advocate.”

Sherri was referring to Lisa Blackstock, a professional advocate who founded Soul Sherpa to help guide patients through the healthcare system. Blackstock had been a volunteer at Cedars-Sinai for several years and knew her way around one of the most respected hospitals in Los Angeles. 

The day before she went to the hospital, Sherri was still having suicidal thoughts.

“I woke at 3am today, ready to give up the fight and end my life. This is not dramatic or blaming of you, but just a statement of fact: my life has not been worth living for 2 years,” Sherri wrote in an email to Blackstock.

The two women went to Cedars-Sinai together and were in the emergency room for 11 hours before Sherri was finally admitted as a patient with severe abdominal pain on the evening of July 3rd.

Over the next two days, Sherri was examined by doctors and a psychiatrist, who concluded she was a “moderate” suicide risk because she had never actually tried to take her own life.

“Patient is at moderate risk of harm to self, but does not meet criteria for involuntary psychiatric treatment at this time,” the psychiatrist wrote in Sherri’s medical records, which were provided to Pain News Network by her mother.

cedars-sinai medical center

Sherri was scheduled for a colonoscopy on July 6, but never had the procedure.  For reasons that are not clear, she became frustrated with her treatment and left the hospital the night before.

“She left against medical advice,” Sherri’s discharge notes say. “Efforts were made to talk to her about the seriousness of her decision. She explained that she understood but, however, would like to leave against medical advice.”

Lisa Blackstock didn’t learn about Sherri’s release until it was too late.

“Despite a HIPAA release (patient release form) on file naming me as Sherri's contact, the doctor did not contact me and decided there was no reason to place her on a 72-hour involuntary hold,” Blackstock wrote in a letter to the coroner’s investigator. “Sherri was allowed to leave the hospital, in pain and suicidal, and the physicians responsible for her care failed miserably.

“I am a long-term volunteer at Cedars, and, until this incident, had great respect for them.  Changes in healthcare law have resulted in substandard care for many patients depending upon their insurance coverage types, as well as hospital administrators dictating care for patients rather than skilled physicians.”

A spokeswoman for Cedars-Sinai said the hospital was unable to comment and wouldn’t even confirm Sherri had been a patient there.

“State and federal privacy laws prevent hospitals from releasing information about patients without their consent, including whether an individual may or may not be a current or former patient,” wrote Sally Stewart in an email to PNN.

Cocktail of Medications

Long before she was admitted to Cedars-Sinai, Sherri was prescribed a potent cocktail of medications for her pain and depression; including the opioids tramadol and hydrocodone, as well as Lyrica (pregabalin), Ambien (zolpidem), and Klonopin (clonazepam).    

Lyrica, Ambien and Klonopin have all been linked to increased risk of suicide.  

Lyrica has an FDA warning label that states the drug “may cause suicidal thoughts or actions” and Ambien’s label warns that “depression or suicidal thinking may occur.”

Klonopin belongs to a class of sedatives known as benzodiazepines, which are increasingly being linked to overdoses, especially when combined with opioids. Klonopin’s label also warns of “suicidal behavior and ideation.”

Why were doctors prescribing these drugs to someone who was suicidal? And why did Cedars-Sinai release Sherri with the drugs in her possession?

“They discharged her with all of them at Cedars, which I found just incredibly irresponsible,” says Blackstock.

According to the autopsy report, the coroner found only trace amounts of opioids and Ambien in Sherri’s system, but apparently never looked for the other drugs. Her official cause of death is listed vaguely as “combined effects of medications.”

Were the same drugs that Sherri took for her pain and depression – which were ineffective in helping either – used as instruments in her death? 

We may never know the answer.

“I have fought to get help for the disease I am dying of – pseudomembranous colitis – for years without help from anyone,” Sherri wrote in her suicide note. “I do not want to be resuscitated. There is nothing left for me but to be tied to a hospital bed in great pain.” 

Sherri was divorced and did not have any children. But a close circle of friends and loved ones are anxious to have her story told and her memory preserved.

“She was beautiful from the time she was little. She was beautiful up to the day she died.  She looked 20 years younger than she was,” recalls Sherri’s mother, Lynda.

“She loved to help people. She wanted to help people and she couldn’t understand why nobody would help her. She would have been there for anybody.”

“Sherri was one of those rare people that could light up the room upon entering,” recalls her friend, Tina Petrova. “During the all too short time I knew Sherri, her key focus above all was advocating for pain patients, speaking up, getting involved. Her search for treatments for her own painful conditions took a back seat to her passion to help others.

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

Sherri’s advocacy will continue, thanks to a website Petrova created to honor Sherri's memory and the documentary that she’s producing on chronic pain in North America.

What can the rest of us learn from Sherri’s struggle?

Perhaps those lessons are best learned through her own words -- and the advice that Sherri gave to other pain sufferers:

Acupuncture Lessens Fibromyalgia Pain

By Pat Anson, Editor

Nine weekly sessions of individualized acupuncture significantly lessened pain intensity and improved function and quality of life in people with fibromyalgia, according to researchers in Spain. Their placebo controlled study, published in Acupuncture in Medicine, also found the beneficial effects of acupuncture often continued a year later.

Fibromyalgia is a poorly understood disorder characterized by deep tissue pain, headaches, fatigue, depression and insomnia. It affects about one in 20 people.  The cause is unknown and there is no cure.

About 90% of people who have fibromyalgia try some form of alternative therapy such as massage, hydrotherapy, and acupuncture. But most of the data on the effectiveness of acupuncture have been based on clinical trials of standard, rather than individually tailored, treatment.

To find out if a more personalized approach would be more effective, researchers compared individually tailored acupuncture therapy with sham treatment in 153 adults, all of whom had been diagnosed with fibromyalgia, according to diagnostic criteria set out by the American College of Rheumatology.

Patients continued to take whatever drugs they had been prescribed to alleviate symptoms during the course of the study.

Both the real and simulated treatments were provided in nine weekly sessions, each lasting 20 minutes. Participants were asked about their perceived levels of pain, depression, and health related quality of life (physical and mental) before treatment began; and then again at 10 weeks, 6 months, and 12 months afterwards. The overall impact of their condition was measured by the Fibromyalgia Impact Questionnaire (FIQ).

After 10 weeks, perceived pain intensity was lower among those given real acupuncture. Their pain scores had dropped by an average of 41%, compared with an average of 27% for those given the placebo treatment. Significant differences persisted after a year, with an average fall of 20% in the pain score among those treated with acupuncture compared to about 6% for those given the simulated treatment.

Participants who were given the real treatment also had fewer tender points, and had less fatigue, anxiety and depression. FIQ scores also differed significantly between the two groups.

“Individualized acupuncture treatment in primary care in patients with fibromyalgia proved efficacious in terms of pain relief, compared with placebo treatment. The effect persisted at one year, and its side effects were mild and infrequent. Therefore, the use of individualized acupuncture in patients with fibromyalgia is recommended,” wrote lead author Dr. Jorge Vas, Doña Mercedes Primary Health Centre, in Dos Hermanas, Spain.

Acupuncture was originally developed as part of traditional Chinese medicine and is one of the most widely practiced forms of alternative medicine. As many as 3 million Americans receive acupuncture treatments, most often for relief of chronic pain. While there is little consensus in the medical community about acupuncture’s value, a large study in the Archives of Internal Medicine found that  “acupuncture is effective for the treatment of chronic pain and is therefore a reasonable referral option.”