‘Radical Shift’ Predicted in Fibromyalgia Diagnosis and Treatment  

By Pat Anson, PNN Editor

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

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

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

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

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

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

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

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

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

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

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

Shades of Grey

By Mia Maysack, PNN Columnist

A blonde walks into the mall, minding her own business, and sits down at a table in the food court.

A random dude calls out, "Don't you know it's rude to keep sunglasses on in here?"

That line felt like a punch to me.

"Well good sir, what can I say? My migraine lacks proper manners."

Yes, I wear sunglasses indoors because I'm cool like that. But it's also because after living with persistent and debilitating head pain for almost two decades, I need to wear sunglasses as a shield against the brutal assault of fluorescent lighting.

And sunglasses are one of the few ways I can make my seemingly non-existent illness visible to the rest of the world.  

There are specially designated migraine glasses that provide relief by strategically dimming light. Brightness levels on cell phones and other devices can also be turned down by a special app that filters blue light.   

Despite these helpful tools, walking under the bulbs in any public place feels as though light is raining down on me and, like a sponge, absorbing all of my energy.

That is why a trip to the grocery store could go well, but afterwards I'm out for the count and barely able to make it up the stairs.

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Within the last couple years, my mobility has continued to be compromised -- especially when it comes to either sitting (driving) or shifting positions (sitting to standing). At a conference recently, after noticing my navigation or lack thereof, a dear colleague suggested what I had been silently dreading: the possibility of using a cane. There's nothing wrong with canes, I'm grateful for all medical devices, but suffice to say they aren’t exactly what I had pictured at the ripe old age of 29.  

I've become accustomed to losing a lot as a result of chronic pain and illness, but confronting a limited physical future is my newest anguish.

The combination of chronic cluster headaches, daily intractable migraines and now fibromyalgia not only heighten the pain scale number, it hinders even the simplest of daily tasks. It impacts the few things I am still able to do that bring me joy, such as participate in creative body movement through yoga or dance.

I smirk thinking back to the days I could go out and dance for hours on end. There's a certain spark that comes alive in me when bass throbs its way through a loudspeaker. I'm quite aware that is contradictory to head pain, yet somehow, I cannot live without it. My soul begins to vibrate in the most calming way as I am enticed by the rhythm and it takes over.

Fast forward to today and I'm fortunate to get a couple minutes of dancing in before symptoms worsen. I cannot go as hard or as long as I used to, but it has caused an evolution in my movement, leading me to a whole-body present moment acceptance.  

Last week at an appointment, I mentioned that a cane will likely be needed daily in the near future. Initially the provider skipped over the remark entirely, but when I brought the conversation back around to ensure we were on the same page, she reacted with “Oh yes, your question about a cane.” 

I don’t recall needing an answer so much as an acknowledgement, as I do not feel the need to ask for permission to do what’s going to be best for myself. 

It’s never too far from my mind that I walked away from bacterial meningitis. If it is now catching up to me, there’s never an ideal time for that to happen and I am fortunate to have had moments with an abundance of blessings. No matter how dark life can get, it’s imperative we make the absolute most of every breath and make a conscious commitment for the sake of ourselves to never give up. 

Whether we live inflicted with physical ailments or not, none of us know what the future holds, nor when our number may be up. All it takes is a slight change in circumstance to alter our lives forever, so we must take time to appreciate and find ways to enjoy the gifts we have. 

The blonde kept the shades on and walked out with her cane like the bad ass that she is!      

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

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.

Why I’m Fed Up with the Healthcare System

By Nyesha Brooks, Guest Columnist

I'm so fed up with the healthcare system. I was diagnosed a year ago with a chronic invisible illness known as fibromyalgia. I also have depression and anxiety. I was relieved to finally have a name for what I was going through.

My journey with this illness has been pure hell. I live with chronic pain every day of my life. I had to resign from my employment of 8 years because I could not bear the pain any longer.

Suicide is a BIG concern when people have fibromyalgia. I had to reach out to the crisis hotline due to feeling like nobody understood. The pain is so unbearable, constant fatigue, numbness in your body parts, and crippling back pain at times. You also get brain fog that can cause memory loss and mood swings. It’s all isolating.

While there is no cure for fibromyalgia, doctors say it’s not fatal. But if you live your life in pain every day, it will cause all kinds of health problems that can lead to death.

My issue with the doctors today is they don't listen anymore and they stereotype everyone as opioid abusers. I’ve never done drugs or abused medications in my life. Even when I'm in severe pain, I still take only what is prescribed for me. It's almost like they want you to go home and suffer.

The problem with fibromyalgia is there's no detection or extensive research on it. There’s not a lot of information out there. To the naked eye I look fine and healthy. However, that’s not my reality. I have nerve damage. When I'm home I wear something very comfortable and I'm in bed most of my day. We are very sensitive to loud sounds and light. I listen to a lot of relaxing sounds on Youtube such as the rain falling.

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I have big help from my family that assist me throughout the day because I have limitations. I take all kinds of medications that I keep in a bag. The medication doesn't work at all. It just makes you very drowsy and increases the pain that you’re already in. Due to the opioid epidemic, we're restricted from getting the right medications.

I’ve been to the ER so many times because I get flare ups that can last all day or weeks. I'm on high blood pressure medicine due to being in severe pain. I'm telling you I don’t wish this on my worst enemy.

I have been fighting for my social security disability for a year now. I was rejected the first time and now I’m waiting on my appeal decision. It’s very upsetting because I'm a mother and I just want to take care my children.

Plan B is not even an option for me because I can't handle a day-to-day job. One task burns me out or takes me hours to do. My therapist says because I'm always stressing, I'm not going to be here to see my benefits. Today my doctor looked at me and suggested because of my age I should go back to the work world. I'm fed up. My doctor bases my reality on his research. How is research more accurate than my truth?

I met so many fibro warriors from a support group on Instagram and we all have similar stories with the healthcare system. I need help getting this awareness out because fibromyalgia matters and is real. The doctors need to take our illnesses seriously and listen. One rejection can cost a person their life. We need love, support and understanding.

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Nyesha Brooks lives in South Philadelphia.

Do you have a story you want to share on PNN? Send it 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.

1 in 5 Multiple Sclerosis Patients Misdiagnosed

By Pat Anson, PNN Editor

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

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

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

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

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

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

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

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

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

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

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

Men Needed for Fibromyalgia Vaccine Study

By Pat Anson, PNN Editor

The start of a potentially groundbreaking study of a vaccine to treat fibromyalgia has been delayed because not enough men have volunteered to participate.

Massachusetts General Hospital and EpicGenetics – a Los Angeles-based  biomedical company  – received FDA approval last year to enroll 300 fibromyalgia patients in a placebo controlled Phase 2 study to see if the bacillus Calmette-Guérin (BCG) vaccine can be an effective treatment for fibromyalgia. Volunteers must first test positive for fibromyalgia after taking a diagnostic blood test developed by EpicGenetics.  

Half the volunteers will receive injections of the BCG vaccine every 12 months, while the other half will receive placebo injections. The 3-year study was initially projected to begin January first, but has yet to get underway.

“One of the problems we’re having is that the vast majority of the people who have taken the blood test are women aged 50 and above,” said Bruce Gillis, MD, the CEO and founder of EpicGenetics. “We really need more diversity. So we are pushing hard to find more men and more younger people to test.

“We’re still hoping to start this year. But we’re hoping for more diversity in the patients.”

Fibromyalgia is a poorly understood disorder that causes widespread body pain, fatigue, insomnia, headaches and mood swings. The cause is unknown, there is no cure and the symptoms are difficult to manage. Between 75 and 90 percent of the people who have fibromyalgia are women.

The BCG vaccine has been used for over 80 years to prevent tuberculosis and meningitis in children. Gillis believes the same vaccine can be used in adults to stimulate the immune system and reverse symptoms of fibromyalgia.

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“When BCG has been administered in other chronic illnesses, it has triggered the immune system’s stem cells to change their behavior. And in our case, we believe that should allow for the production of healthier peripheral blood mono-nuclear cells -- the white blood cells that we find to be impacted in fibromyalgia,” Gillis told PNN.

“The expectation is that when the patient receives the BCG there is a stimulus to change stem cells and white blood cell production to produce healthier cells.  And as a consequence, their fibromyalgia should be reversible.”

EpicGenetics’ FM/a blood test for fibromyalgia was first introduced in 2012 and is now covered by Medicare and most insurance companies. The cash cost for patients without insurance is $1,080. If the BCG vaccine proves effective, Gillis says the vaccine will be provided at no cost to patients who test positive for fibromyalgia.

Anyone interested in participating in the study at Massachusetts General Hospital should send an email to fmtest@epicgtx.com.

“We need patients from age 18 to 80 plus. And we need more men. I don’t think I’ll ever get an equivalent number of men as I will women, but I need more than just a handful of men,” says Gillis.

Study: Alcohol Relieves Fibromyalgia Pain

By Pat Anson, PNN Editor

Another study is adding to a growing body of evidence that alcohol is an effective – yet risky – way to treat chronic pain.

Researchers at the University of Michigan surveyed over 2,500 patients being treated at a university pain clinic about their drinking habits, pain severity and physical function. Participants were also assessed for signs of depression and anxiety. About a third of the patients were diagnosed with fibromyalgia (FM), a poorly understood disorder characterized by widespread body pain, fatigue, insomnia, headaches and mood swings.

Researchers, who recently published their study in the journal Pain Medicine, found that patients who were moderate drinkers had less pain and other symptoms than those who did not drink alcohol.

“Female and male chronic pain patients who drink no more than 7 and 14 alcoholic drinks per week, respectively, reported significantly lower FM symptoms, pain severity, pain-related interference in activities, depression, anxiety and catastrophizing, and higher physical function,” said lead author Ryan Scott, MPH, of UM’s Chronic Pain and Fatigue Research Center.

“These findings suggest that chronic pain patients with a lesser degree of pain centralization may benefit most from low-risk, moderate alcohol consumption.”

According to the Mayo Clinic, moderate alcohol consumption for healthy adults means up to one drink a day for women of all ages and men older than age 65, and up to two drinks a day for men age 65 and younger.

Of the study participants, over half reported use of opioid medication, which carries serious risks when combined with alcohol. Perhaps for that reason, participants in the UM study drank less alcohol than the general population.

“People with chronic pain may drink less due to the stigma and because they are being told not to drink while on pain medication,” says Scott.

Moderate drinkers with chronic pain were more likely to be white, have an advanced degree and were less likely to use opioids. They reported less pain, lower anxiety and depression, and higher physical function.

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Researchers found that fibromyalgia patients who drank moderately reported decreased pain severity and depression, but alcohol had no effect on how widespread their pain was or other symptoms such as cramps, headache, fatigue, poor sleep and cognitive dysfunction.

Scott believes alcohol may stimulate the production of gamma-aminobutyric acid (GABA), a neurotransmitter in the central nervous system that reduces nerve activity. Alcohol and drugs such as gabapentin (Neurontin) that act on GABA typically have relaxing effects.

“Alcohol increases gamma-aminobutyric acid in the brain, which is why we could be seeing some of the psychiatric effects. Even though alcohol helped some fibromyalgia patients, it didn’t have the same level of effect,” said Scott. “You probably need much more GABA to block pain signals and that may be why we’re not seeing as high an effect in these patients.”

Over a dozen previous studies have also found that alcohol is an effective pain reliever. In a 2017 review published in the Journal of Pain, British researchers found “robust evidence” that alcohol acts as an analgesic.

“It could be a stepping stone to increased quality of life, leading to more social interactions,” says Scott. “Fibromyalgia patients in particular have a lot of psychological trauma, anxiety and catastrophizing, and allowing for the occasional drink might increase social habits and overall health.”

Ambroxol: A Potential New Treatment for Chronic Pain

By A Rahman Ford, PNN Columnist

Researchers say a drug long used in cough syrup and cold medicines shows potential for treating some types of neuropathic pain.

A small study recently published in the journal Headache found that topical administration of ambroxol in a cream could significantly decrease pain in patients with trigeminal neuralgia, a chronic facial condition that can make even routine tasks such as brushing one’s teeth excruciatingly painful. 

In their review of the medical records of five trigeminal neuralgia patients, German researchers reported that all five patients experienced pain reduction with ambroxol 20% cream being applied within 30 minutes of a pain flare, with pain relief lasting from 4 to 6 hours.  In one case, pain was eliminated completely in one week.  

The results were similar to those of previous German studies and were so significant that researchers recommended that ambroxol “should be investigated further as a matter of urgency.”

Similarly, a recent study in the journal Pain Management found that application of topical ambroxol reduced spontaneous pain in several patients with complex regional pain syndrome (CRPS), a little understood nerve condition that causes chronic pain after a significant injury or surgery.  Notably, ambroxol therapy improved several other neuropathy-related conditions in CRPS patients, including edema, allodynia, hyperalgesia, skin reddening, motor dysfunction and skin temperature.

An Old Drug with a New Purpose

With a pharmacological history that can be traced back to Indian ayurvedic medicine, ambroxol was initially approved in 1978 as a medication to break down mucus and make it easier to eliminate by coughing.  It is generally administered in tablet or syrup form. 

Ambroxol is also used to treat a sore throat associated with pharyngitis, thus its potential role as a potent local anesthetic.  The drug’s anesthetic properties stem from its ability to block sodium and calcium channels that transmit pain signals.

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Although the idea that ambroxol can treat a sore throat is widely accepted, its application to other forms of pain is more recent.  

Previous studies using animal models of neuropathic pain have been promising.  In a 2005 study, researchers effectively reduced – and in some cases eliminated – chronic neuropathic and inflammatory pain in rats. Indian researchers also found ambroxol effective in treating neuropathic pain in rats, attributing its success to its antioxidative and anti-inflammatory properties.  Unfortunately, human studies are few at this point.

Ambroxol and Fibromyalgia

A 2017 Clinical Rheumatology study showed that ambroxol can play a key role in treating chronic pain associated with fibromyalgia.  As reported by Fibromyalgia News Today, researchers from Mexico added ambroxol to the treatment regimens of 25 fibromyalgia patients, three times a day for one month.  At the end of the study, pain scores decreased significantly and there was also noticeable improvement in sleep disturbances, stiffness and autonomic nervous system dysfunction.  No major adverse events were reported. 

Another 2017 study supported these findings, with the authors concluding that “fibromyalgia treatment with ambroxol should be systematically investigated” because the drug “is the only treatment option used thus far that has the potential to address not just individual but all of the aforementioned aspects of pain.”

Although data on its effectiveness in humans are limited, ambroxol shows great potential in treating painful conditions for which there are currently few safe and effective options.  It is particularly attractive because it has few significant side effects, is not addictive and can be administered topically in some instances.

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A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food.

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.

Study Finds Naltrexone Has No Serious Side Effects

By Pat Anson, PNN Editor

A generic drug increasingly used off-label to treat fibromyalgia and other chronic pain conditions is safe to use and more clinical studies are needed on its potential uses, according to British researchers.

Naltrexone is primarily used to treat alcoholism and opioid addiction, but many patients have discovered that low doses of naltrexone (LDN) are effective in relieving pain and other symptoms.

Many doctors won’t prescribe naltrexone, often citing liver toxicity as a reason. But when researchers at The University of Manchester reviewed 89 placebo-controlled studies of naltrexone involving over 11,000 patients, they found no evidence of any serious side effects.

"Though naltrexone is licensed for the treatment of alcohol addiction, it remains underutilized,” says lead author Monica Bolton, PhD, who reported her findings in the journal BMC Medicine. "And that has devastating consequences for individuals, health and social services in the UK and around the world.

"It is cost effective and could reduce deaths."

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“Our review also shows that fears over side-effects are unfounded," said co-author Alex Hodkinson, Phd. "Like all drugs for alcohol addiction, the chaotic nature of being an addict means this drug is simply not prescribed as much as it should be,”

Naltrexone does cause minor side effects in some patients, such as nausea and dizziness, and because it is an opioid antagonist the drug should not be taken with opioid medication.

The fact that naltrexone is generic and inexpensive is one reason the drug is not more widely prescribed. There is little incentive for pharmaceutical companies to market naltrexone or to conduct expensive clinical trials to prove its effectiveness in treating pain.

"As it is safe, cheap and long out of patent, naltrexone would seem an excellent candidate for repurposing for a whole range of conditions,” says Bolton. "That is why it is imperative to find ways to fund clinical trials to test if it might one day be possible to license it.

"The problem is, it is extremely difficult to repurpose existing drugs - and naltrexone is just one example of many wasted opportunities to treat people and save the NHS money."

Of the 89 naltrexone trials included in the Manchester University study, only 3 dealt with chronic pain conditions.

Anecdotal evidence suggests that at very low doses of 5 mg or less, naltrexone may be able to treat a range of immune-modulated conditions including Crohn's disease, HIV, multiple sclerosis, fibromyalgia and Chronic Fatigue Syndrome (ME/CFS).

In a PNN guest column, Marelle Reid shared her experience using LDN to treat Interstitial Cystitis, while Janice Hollander said LDN “completely changed my life” when she started taking it for fibromyalgia.

Patients interested in trying LDN often encounter doctors who refuse to prescribe it. The LDN Research Trust includes a list of LDN-friendly doctors and pharmacies on its website.

 

Climbing Mountains Together

By Mia Maysack, PNN Columnist

Just about every time I'm in the bathtub, I contemplate slipping my head under water for a tad bit too long.  I do not consider myself suicidal, nor do I really want to die in the literal sense. But sometimes I reach a point when I'd do almost anything to kill this pain.   

Current situation: At least 30 cluster headache attacks thus far this week. Constant migraine going strong for about two weeks. Ongoing fibromyalgia flares. Working to pass kidney stones induced by stress and dehydration. Nausea, dizziness, fatigue and exhaustion have latched onto my soul like draining parasites. None of my go-to treatments have eased any of the discomfort.   

Despite my own battles, I consistently make myself available to others in the thick of their own private storms. The world needs more light and I can always use a distraction from my own body self-destructing. Win/win.  

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Recently I did what I could to talk a loved one off the ledge. This person is also unwell but in a very different way. Their infliction is not physical, but boils down to their own personal choices.  

You might imagine the frustration I feel when surrounded by others who could save themselves from drowning simply by standing up.

All the while, I've been standing strong for years but consistently get swept away by overwhelming undercurrents that are entirely out of my control. 

It can be difficult to encourage others to live when you're barely hanging onto a shred of hope for yourself. But I consider myself honored for the opportunity to try.  

I cannot keep track of how many times I've had to “die" in a figurative sense so that I could grieve the losses of countless aspirations, ideas, goals and dreams.  I've always been known as a positive person and that's most definitely who I am.  It is not an act, but people tend to think it’s easy for me and they couldn't be more wrong. 

It takes absolutely everything I have to lay my head down at night, knowing I'll awaken to the same demons I spent the previous day slaying. And that it'll likely remain this way, forever.  

My positivity began out of necessity and is a method of survival. Relentless pain every single day for 20 years straight is enough for anyone to question their sanity or possibly even lose it. As a matter of fact, we're currently mourning the medically assisted suicide of a fellow Pain Warrior, who endured similar pain for the same amount of time.   

I felt the need to write this so that others do not think they are crazy. Under our circumstances, it's understandable we might fantasize about no longer feeling this way. The mantras, positive quotes and clichés can only get us so far, and it can be downright devastating to not have adequate support, acknowledgment, validation or pain relief.  

I also had to write this because I want to convey that you are all the main reason why I still hold on. Knowing there's a community of others who truly get it, provides me with a purpose and reason to get myself out of bed in the morning.

It has become my mission to demonstrate that these mountains of misfortune aren't meant to be carried, but they can be climbed. They might even be moved if we all work together.   

No one can give us quality of life or the will to live outside of ourselves, but we can lean on one another during our deepest and darkest moments of despair. It's okay to have bad days, to be in a negative headspace, to question the purpose of all this, to feel angry, hurt or sad.  

As I envision the water calming my ailments and swirling its way down the drain, I think about the possibility of someone reading this at a time they needed it most. That thought gives me the strength I need. 

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

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.

Can Gabapentin Improve Your Sex Life?

By Pat Anson, PNN Editor

Over the years the nerve drug gabapentin (Neurontin) has been used to treat a cornucopia of chronic pain conditions, from fibromyalgia and diabetic neuropathy to hot flashes and shingles.

Gabapentin is so widely prescribed that a Pfizer executive once called the drug “the snake oil of the twentieth century” because researchers found it successful in treating just about everything they studied.

Add sexual function to the list.

In a small study, researchers at Rutgers University found that gabapentin improved sexual desire, arousal and satisfaction in 89 women with provoked vulvodynia, a chronic condition characterized by stinging, burning and itching at the entry to the vagina. Vulvar pain often occurs during intercourse, which leads to loss of interest in sex.

The improvements in desire, arousal and sexual satisfaction were small, but considered “statistically significant” in research parlance. Gabapentin did not improve lubrication or orgasm.

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"Our theory was that reducing pelvic floor muscle pain might reduce vulvodynia pain overall and thus improve sexual function," said Gloria Bachmann, MD, director of the Women's Health Institute at Rutgers and lead author of the study published in the Journal of Obstetrics and Gynecology.

"We found that women with greater muscle pain responded better in terms of pain and improved arousal than those with less pain, which suggests that Gabapentin be considered for treatment in women who have significant muscle tightness and spasm in the pelvic region.”

Does this mean gabapentin is a female version of Viagra? Not necessarily, says Bachmann, who stressed that the study only focused on women with vulvodynia.

“We didn't research the question of gabapentin enhancing sexual function in all women,” Bachmann wrote in an email to PNN. “The decision to give gabapentin to a woman who reports chronic vulvar pain and sexual dysfunction would have to be made on an individual basis, depending on her medical history and the results of her physical and pelvic examination.

“From the data, it appears that women with increased muscle tenderness of the pelvic floor may be the group who benefit most from gabapentin.”

Sales of gabapentin have soared in recent years — not because it improves sexual satisfaction — but because it is seen as a safer pain reliever than opioid medication.

Patients prescribed gabapentin often complain of side effects such as mood swings, depression, dizziness, fatigue and drowsiness.  Drug abusers have also discovered that gabapentin can heighten the effects of heroin, cocaine and other illicit substances, and it is increasingly being abused.

Lyrica Not Effective for Treating Traumatic Nerve Pain

By Pat Anson, Editor

Pregabalin is not effective in relieving chronic pain caused by traumatic nerve injury, but it may be useful as an analgesic in treating pain after surgery, according to a new study published in the Journal of Neurology.

The placebo-controlled study followed 539 patients in North America, Europe, Africa and Asia for three months. About half had nerve pain after surgery, while the rest had nerve pain after an accident or trauma.

Researchers found that pregabalin was not an effective pain reliever for the patients with traumatic nerve injuries, but the drug did provide better pain relief than placebo for the surgery patients.

"While these finding show that pregabalin is not effective in controlling the long-term pain for traumatic injury, it may provide relief for patients (that) experience post-surgical pain," said lead author John Markman, MD, director of the Translational Pain Research Program in the University of Rochester Department of Neurosurgery.

"The possibility that there was pain relief for those patients who had a hernia repair, or breast surgery for cancer, or a joint replacement lays the groundwork for future studies in these post-surgical syndromes where there is so much need for non-opioid treatments."

Pregabalin, which is sold by Pfizer under the brand name Lyrica, is FDA-approved for the treatment of chronic pain associated with shingles, spinal cord injury, fibromyalgia, and diabetic peripheral neuropathy.

It is also commonly prescribed as an "off label" treatment for other types of chronic pain and as an alternative to opioid medication.

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A major challenge for doctors is that biological changes in nerves and other tissues while healing from surgery or trauma vary from one patient to the next. There is also no diagnostic method that allows doctors to identify which patients will respond to a particular type of pain treatment.

"Given the rising rates of surgery and shrinking reliance on opioids, it is critical that we understand how to study new drugs that work differently in patients like the ones included in this study," Markman added.

While critics often say there is little or no evidence to support the long-term use of opioids, the same is true for other types of pain medication, including pregabalin. Nevertheless, in its guideline for opioids, the Centers for Disease Control and Prevention recommends pregabalin and its chemical cousin gabapentin as alternatives for treating chronic pain – without even mentioning their side effects or potential for abuse.

Pregabalin and gabapentin belong to a class of nerve medication called gabapentinoids, which were originally developed to treat epilepsy, not pain. In recent, deaths involving gabapentinoids have increased in the UK, Australia and Canada, where some addicts have learned the drugs can heighten the euphoric effect of heroin and other opioids.

The use of pregabalin and gabapentin has tripled in the U.S. over the past decade, but health officials have only recently started looking into their misuse and abuse. While gabapentin has a warning label cautioning users who take the drug with opioids, there is no similar warning for pregabalin.

Fibromyalgia and the High Risk of Suicide

By Pat Anson, PNN Editor

Studies have shown that fibromyalgia patients are 10 times more likely to die by suicide than the general population, and about three times more likely than other chronic pain patients.

What can be done to reduce that alarmingly high risk?

One possible solution is for fibromyalgia patients to visit a doctor more often, according to a new study published in the journal Arthritis Care & Research.

Researchers at Vanderbilt University Medical Center analyzed health data for nearly 8,900 fibromyalgia patients, finding 34 known suicide attempts and 96 documented cases of suicidal thoughts – also known as suicide ideation. Then they looked at how often the patients saw a doctor.

On average, patients who had suicidal thoughts spent 1.7 hours seeing a doctor per year, while those who did not have suicide ideation visited a doctor an average of 5.9 hours per year.

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The difference was even more substantial for those who tried to commit suicide. Fibromyalgia patients who attempted suicide saw a doctor for less than an hour a year, compared to over 50 hours per year for those who did not try to kill themselves.

“Fifty hours versus one hour – that’s a staggering difference,” said lead author Lindsey McKernan, PhD, a professor of Psychiatry & Behavioral Sciences at Vanderbilt University Medical Center. “They might have been at one appointment in a year and this disorder, fibromyalgia, takes a lot to manage. It takes a lot of engagement.”

Fibromyalgia is characterized by deep tissue pain, fatigue, depression, insomnia and mood swings. Because fibromyalgia is difficult to diagnose and treat, there is a fair amount of stigma associated with it and patients often feel like they are not believed or taken seriously by their family, friends and doctors.

Self-isolation could be one reason fibromyalgia patients don’t visit a physician as often as they should.

“If you really break it down the people who were having suicidal thoughts weren’t going into the doctor as much. I think about the people who might be falling through the cracks. Chronic pain in and of itself is very isolating over time,” said McKernan.

“Perhaps we can connect those individuals to an outpatient provider, or providers, to improve their care and reduce their suicide risk. We also might see patients at-risk establish meaningful relationships with providers whom they can contact in times of crisis,” said senior author Colin Walsh, MD, a professor of Biomedical Informatics at Vanderbilt.

In addition to seeing a primary care provider or rheumatologist, researchers say fibromyalgia patients should be getting regular exercise and physical therapy, and working with a psychologist or mental health provider.

“We looked at thousands of people in this study and not one who received mental health services of some kind went on to attempt suicide,” McKernan said.

“Often, when you are hurting, your body tells you to stay in bed. Moving is the last thing that you want to do. And when you are tired, when your mood is low, when your body aches, you don’t want to see anybody, but that is exactly what you need to do — contact your doctors, stay in touch with them, and move. It really can make a difference.”

One in 10 Suicides Linked to Chronic Pain

By Pat Anson, PNN Editor

The nation’s suicide rate has been climbing steadily for over a decade and so have the number of suicides associated with chronic pain, according to a groundbreaking study by researchers at the Centers for Disease Control and Prevention.

The researchers looked at over 123,000 suicides in 18 states from 2003 to 2014 and found that about 10 percent of those who died either had chronic pain in their medical records or mentioned it in suicide notes. The percentage of suicides linked to pain grew from 7.4% in 2003 to 10.2% in 2014 – a 27 percent increase in just over a decade.  

“Our results highlight the importance of pain in quality of life and premature death, and contribute to the growing body of evidence indicating that chronic pain might be an important risk factor for suicide,” said lead author Emiko Petrosky, MD, CDC National Center for Injury Prevention and Control.

“The results probably underrepresent the true percentage of suicide decedents who had chronic pain, given the nature of the data and how they were captured.”

The study, published in the Annals of Internal Medicine, is one of the first of its kind to explore the connection between pain and suicide – which is now the 10th leading cause of death in the United States.

Nearly 45,000 Americans took their own lives in 2016, more than the number of poisoning deaths from illicit and prescription opioids.

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Back pain was the most common condition involved in pain suicides, followed by cancer pain, arthritis, migraine and fibromyalgia. Anxiety and depression were also more likely to be diagnosed in pain suicides than in those without pain.

More than a quarter of the suicide victims with chronic pain (27.1%) had served in the military. Over half died from firearm injuries and 16.2% by opioid overdose.

“Although opioid prescribing to treat chronic pain has increased in recent years, we found that the percentage of decedents with chronic pain who died by opioid overdose did not change over time. This finding suggests that increases in opioid availability are not associated with greater suicide risk from opioid overdose among patients with chronic pain.” Petrosky said.

It’s worth noting that the 2003-2014 study period was before the CDC released its controversial guideline on opioid prescribing in 2016, a sea change event that many in the pain community blame for lack of access to opioid medication and growing number of patient suicides.

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“I know that I could not stand my pain if my morphine is taken away,” one reader told us. “I will be a suicide statistic. Make sure the CDC gets blamed for my death.”

“I can only speak for myself how the CDC guidelines and the FORCED reduction of my pain medicine has brought my life to a near standstill. I get up in the mornings now and I think 5 out of those 7 mornings I sit here and cry,” said another.

“A few years ago I would've thought that the idea of deliberately driving people to suicide was a crazy conspiracy theory. Now I have almost no problem believing it,” wrote another reader.

As PNN has reported, the CDC is making no concerted effort to evaluate or track the impact of its opioid guideline on patients or on the quality of pain care. When asked if lack of access to opioid medication may be contributing to patient suicides, CDC officials would only say they were tracking opioid prescribing rates and “working on comprehensive pain management strategies.”

Lady Gaga: ‘Chronic Pain Is No Joke’

By Pat Anson, PNN Editor

One of the few celebrities brave enough to speak openly about their battle with chronic pain is talking about it again – in a fashion magazine.

"Chronic pain is no joke. And it's every day waking up not knowing how you're going to feel," Lada Gaga told Vogue in a cover story.

Last year, Lady Gaga revealed that she suffers from fibromyalgia, a poorly understood disorder characterized by deep tissue pain, fatigue, depression and insomnia.

A pain flare up forced her to cancel several concert appearances, which led some skeptics to complain that it was a publicity stunt to promote “Gaga: Five Foot Two,” a Netflix documentary that shows the singer being treated for chronic pain.

Lady Gaga says her fibromyalgia is very real – along with the post-traumatic stress disorder (PTSD) she has from being sexually assaulted as a teenager.

"I get so irritated with people who don't believe fibromyalgia is real," she told Vogue. "For me, and I think for many others, it's really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder - all of which sends the nervous system into overdrive, and then you have nerve pain as a result.

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“You know that feeling when you’re on a roller coaster and you’re just about to go down the really steep slope? That fear and the drop in your stomach? My diaphragm seizes up. Then I have a hard time breathing, and my whole body goes into a spasm. And I begin to cry. That’s what it feels like for trauma victims every day, and it’s… miserable. I always say that trauma has a brain. And it works its way into everything that you do.”

The 32-year old singer said it took years for her to open up about the sexual assault.

“No one else knew. It was almost like I tried to erase it from my brain. And when it finally came out, it was like a big, ugly monster. And you have to face the monster to heal,” she said. “I felt like I was lying to the world because I was feeling so much pain but nobody knew. So that’s why I came out and said that I have PTSD, because I don’t want to hide — any more than I already have to.”

In addition to fibromyalgia and PTSD, Lady Gaga also lives with synovitis, a chronic inflammation in her hip caused by overuse and injury.  Like many pain sufferers, the singer has tried a variety of different treatments to ease her discomfort – from massage to hot saunas to Epsom salt baths. In 2016, she posted on Instagram an image of herself sitting in a sauna wrapped in an emergency blanket.

Lady Gaga’s battle with chronic pain is only a small part of her interview with Vogue. She’s helping to promote A Star is Born – her new film with Brad Cooper that premiers next month.

How Low Dose Naltrexone Relieved My Chronic Pain

By Marelle Reid, Guest Columnist

For the past eight years I've been dealing with Interstitial Cystitis (IC), a chronic pain condition that feels like a bladder infection that never ends. No one really knows what causes IC and there is no cure.

I've tried everything from surgery and homeopathy to narcotics and antidepressants, but nothing seemed to work until I discovered Low Dose Naltrexone (LDN). A hormone specialist suggested I use LDN as a way to combat the nerve pain that had plagued me for years. I figured I might as well try it since the only side effects from LDN are trouble sleeping and vivid dreams.

MARELLE REID

MARELLE REID

After a couple of weeks I found the strange dreams stopped, and a few months later I realized I was able to eat foods I normally would avoid because they made my IC pain worse. In fact, I was able to resume a completely normal diet, including foods and drinks that would have previously sent me into terrible flare.

For the past year I've been taking 4.5mg naltrexone at night just before bed. Although it has not cured me, I've been thrilled to find that it has reduced my pain to the point where I no longer feel held back from doing anything I would have done before I was diagnosed with IC. 

Naltrexone is the same drug used to treat alcoholism and opioid addiction. In larger doses (50mg) it blocks opioid receptors in the brain and decreases the desire to take opiates or alcohol.  It's believed that taking naltrexone in smaller doses stimulates the immune system and the production of endorphins, the body's natural painkiller.

LDN is prescribed "off label" for many conditions, but it isn't well known as a treatment for chronic pain because it's not marketed by any drug company for that purpose. The patent on naltrexone expired years ago and there's little money to be made from it or to conduct clinical trials.

However, a review of anecdotal information online and in social media suggests many people suffering from Crohn's disease, multiple sclerosis, fibromyalgia and other chronic illnesses believe they have benefited from taking LDN. (See "Naltrexone Changed Life of Fibromyalgia Patient").

I hope others can find the same relief that I have. 

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Marelle Reid lives in Vancouver, British Columbia.

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.

Grieving a Former Life

By Pamela Jessen, Guest Columnist

Once upon a time, there was a woman named Pamela. She was a strong, vibrant woman who worked as an operations administrative assistant for a company called FGL Sports, which operated a chain of sporting goods stores in Canada. Pamela took care of the administrative needs of the director and senior management team. 

Unknown to these people, Pamela lived with fibromyalgia and osteoarthritis. She did her job so well that she was able to keep these illnesses hidden for a long time, but they gradually started to get in the way of her work. Pamela eventually had to leave her job and go on permanent disability.

That was really devastating for Pamela because work was her life! She loved everything she did, from organizing training meetings and corporate functions to keeping her boss’s life on track. 

Once she was no longer working, a lot of negative feelings started to dwell up inside Pamela. She started feeling depressed, angry, sad and lonely. These were natural responses to having a chronic illness, but it was also frustrating to have to deal with them on top of not actually having a job to go to.

Pamela felt herself getting more depressed and sometimes it was easier to just stay in bed and sleep rather than get up and face life. She knew this wasn't good, but there really wasn't any reason to get up anymore.

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Well, of course, that woman was me. It was a difficult phase of my life, as work had always been my passion. I was an administrative specialist in retail support for most of my career and I loved what I did. Every day was a treat. Unfortunately, my body just couldn’t keep up with me. The pain and exhaustion that goes along with fibromyalgia and osteoarthritis took over my body and I had to surrender to it. There simply was no other choice. 

After some time, I took a chronic pain management course and started feeling better mentally. This course explored the various stages of grief we go through when you experience a job loss because of illness and disability, and I realized that was exactly what had happened to me. I had been grieving. 

There are five stages of grief: denial, anger, bargaining, depression and acceptance. The instructor asked us what we had to give up in our lives because of chronic illness. He had us make a list and to really think about what was on that list. Mine, of course, was my job and the volunteering that I loved to do. 

I knew going back to work wasn't going to happen again, but I was sure there must be a way I could use my volunteer skills on my terms. Then one day I noticed an advertisement in my local paper for an organization called Patient Voices Network in British Columbia and it looked perfect for me. The group was looking for volunteers who could be the voice of the patient when health care providers needed that voice in their engagements. I attended an orientation session and before I knew it, was attending my first assignment! I loved it from the start and have been an active participant ever since. 

Currently, I am the co-chair of the Oversight & Advisory Committee for Patient Voices Network. I also sit on the Clinical Resources Committee for the BC Emergency Physicians Network. 

It’s amazing how getting involved again in something you love can bring the grieving process full circle to acceptance. I realized that I had given up a lot because of fibromyalgia and osteoarthritis. But by accepting my new limitations, I actually gained a whole lot more.

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Pamela Jessen lives in Langford, British Columbia. She has a blog called There Is Always Hope, where she writes about living with invisible illness.

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.

Growing Abuse of Gabapentin

By Christine Vestal, Stateline

Doctors who are cutting back on prescribing opioids increasingly are opting for gabapentin, a safer, non-narcotic drug recommended by the Centers for Disease Control and Prevention.

By doing so, they may be putting their opioid-using patients at even greater risk.

Recently, gabapentin has started showing up in a substantial number of overdose deaths in hard-hit Appalachian states. The neuropathic (nerve-related) pain reliever was involved in more than a third of Kentucky overdose deaths last year.

Drug users say gabapentin pills, known as “johnnies” or “gabbies,” which often sell for less than a dollar each, enhance the euphoric effects of heroin and when taken alone in high doses can produce a marijuana-like high.

Medical researchers stress that more study is needed to determine the role gabapentin may have played in recent overdose deaths. However, a study of heroin users in England and Wales published last fall concluded that combining opioids and gabapentin “potentially increases the risk of acute overdose death” by hampering breathing and reversing users’ tolerance to heroin and other powerful opioids.

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Kentucky last year classified gabapentin as a controlled substance, making it harder for doctors to prescribe it in copious quantities and for long durations. The new classification also allows police to arrest anyone who illicitly sells the drug, although the state’s drug control chief, Van Ingram, said that was not the intent of the new law.

In the last two years, Illinois, Ohio, Massachusetts, Minnesota, Tennessee, Virginia and Wyoming also have moved to control the flow of gabapentin by requiring doctors and pharmacists to check a prescription drug database before prescribing it to patients to make sure they aren’t already receiving gabapentin, or some other medication that interacts with it, from another physician.

In a statement to Stateline, Pfizer communications director Steven Danehy said, “Reports of misuse and abuse with this class of medicines are limited and typically involve patients with a prior history of substance abuse, including opioids.”

The drugmaker also pledged to “continue working with regulatory authorities and health officials to evaluate and monitor the safety of these medicines.”

Prescribed for Many Conditions

Approved by the FDA in 1993 for the treatment of epilepsy and the nerve pain associated with shingles, gabapentin is sold by Pfizer under the brand name Neurontin. A generic form of the drug has been available since 2004 and is now sold by several other companies as well.

Gabapentin is now one of the most popular prescription drugs in the United States, according to the New England Journal of Medicine. It was the 10th-most-prescribed medication in 2016. Its more expensive cousin, pregabalin, sold as Lyrica and also made by Pfizer, was the eighth best-selling.

Many doctors recommend gabapentin to patients for a long list of disorders, including hot flashes, migraines, restless leg syndrome, fibromyalgia, and neuropathic pain associated with diabetes and spinal injuries. Some doctors also prescribe it for anxiety and insomnia.

Now, research is underway to determine whether gabapentin may be effective as a treatment for alcoholism.

Already, it is widely used to ease the symptoms of drug and alcohol detoxification. And addiction specialists routinely use gabapentin to manage pain in people who are either addicted or at risk of addiction to opioids and other substances.

Alone, high doses of gabapentin have not been found to affect breathing. The vast majority of gabapentin deaths, about 4 in 5, also involved opioids, according to the journal Addiction.

People who stop taking the medication abruptly, however, can suffer withdrawal symptoms such as trembling, sweats and agitation.

In February, Food and Drug Administration director Scott Gottlieb said the agency was reviewing the misuse of gabapentin and, for now, had determined no action was necessary. Similarly, the CDC has not issued a warning about gabapentin, nor has the Drug Enforcement Administration.

(Editor's note: the CDC opioid guidelines recommend gabapentin without any mention of the risk of abuse or overdose associated with the drug, or of possible side effects such as weight gain, anxiety and mood disorders.)

Early Signs of Abuse

In Kentucky, Ingram said it has been clear to police and pharmacists for the last three or four years that gabapentin was becoming an increasingly popular street drug. “People were seeking early refills, claiming they lost their prescriptions and openly conducting transactions in parking lots outside of drug stores,” he said.

But since it wasn’t a controlled substance, nothing was done about it. That’s likely to start changing with the new law, he said.

“Misuse of gabapentin is just one more collateral effect of the opioid epidemic,” said Caleb Alexander, an epidemiologist at Johns Hopkins University who has been studying the heroin and prescription drug epidemic. When one drug becomes less available, drug users historically seek out alternatives, he said. “What is most surprising is the sheer magnitude of its use.”

The share of Appalachian drug users who reported using gabapentin to get high increased nearly 30-fold from 2008 to 2014, according to a 2015 study in the American Journal of Psychiatry.

Paul Earley, an addiction doctor practicing in Georgia and a board member of the American Society of Addiction Medicine, said, “We knew that a small subset of our addiction patients would abuse gabapentin.” But he said it wasn’t until 2016, when Ohio sounded an alarm about the drug’s association with overdose deaths, that addiction doctors started taking the problem more seriously.

“For years, we considered gabapentin to be ‘good for what ails you,’” Earley said. “But I’m much more cautious than I used to be. If there’s anything we’ve learned from the opioid epidemic, it’s that we need to rethink how we prescribe drugs we once assumed were safe.”

This is story is republished with permission by Stateline, an initiative of The Pew Charitable Trusts.

Breakthrough Blood Test Shows the ‘Color of Pain’

By Steve Weakley

A revolutionary new blood test developed by Australian researchers could give doctors instant insight into the severity of chronic pain by identifying colored biomarkers in the blood.  The “painHS” test uses advanced light spectrum analysis to identify the molecular structure of pain in immune cells.

“We are literally quantifying the color of pain,” explains neuroscientist Mark Hutchinson, PhD, a professor at the University of Adelaide Medical School in Australia.  “We’ve now discovered that we can use the natural color of biology to predict the severity of pain. What we’ve found is that persistent chronic pain has a different natural color in immune cells than in a situation where there isn’t persistent pain.”

Hutchinson and his colleagues discovered molecular changes in the immune cells of chronic pain patients. These pain biomarkers can be instantly identified through hyperspectral imaging, giving doctors the ability to measure a patient’s pain tolerance and sensitivity.

The test could potentially provide physicians with the first biology-based test to measure pain as the “5th vital sign” and to justify prescribing pain medication or other therapies.

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Hutchinson was quick to point out that the test is not intended replace a patient’s description of pain to their physician.  Pain is subjective and varies from patient to patient, depending on their medical condition and many other factors.  Current tests used to measure pain in adults, such as the sad and smiley faces of the Wong-Baker pain scale, are so simple they were initially developed for young children.

“Self-reporting (by patients) is still going to be key but what this does mean is that those ‘forgotten people’ who are unable to communicate their pain conditions such as babies or people with dementia can now have their condition diagnosed and treated,” said Hutchinson, who believes the test could also revolutionize pain treatment in animals.

“Animals can’t tell us if they’re in pain but here we have a Dr. Doolittle type test that enables us to ‘talk’ to the animals so we can find out if they are experiencing pain and then we can help them."

Hutchinson says the test could also help speed the development of new drugs that could target particular kinds of chronic pain, and could eliminate the need for placebos in clinical trials by giving an instant indicator of a treatment’s effectiveness.

“We now know there is a peripheral cell signal, so we could start designing new types of drugs for new types of cellular therapies that target the peripheral immune system to tackle central nervous system pain,” he explained.

Hutchinson thinks the “painHS” test could be widely available to pain specialists and general practitioners in as little as 18 months and could provide a cost-effective tool to measure the severity of pain in patients with back problems, cancer, fibromyalgia, migraines and other conditions.

Several other blood tests have already been developed to diagnose patients with specific chronic pain conditions such as fibromyalgia.

IQuity Labs recently introduced a blood test that can identify fibromyalgia by analyzing ribonucleic acid (RNA) in blood molecules. EpicGenetics launched the first fibromyalgia blood test in 2013. That test looks for chemokines and cytokines, which are protein molecules produced by white blood cells.

New Blood Test Launched for Fibromyalgia

By Pat Anson, Editor

A Tennessee laboratory has launched an innovative new blood test that uses RNA analysis to diagnose patients with fibromyalgia. IQuityLabs says its test – called IsolateFibromyalgia – can identify fibromyalgia within a week and with over 90 percent accuracy. The test costs $599.

Ribonucleic acid (RNA) is a molecule that plays an essential role in sensing and communicating responses to cellular signals. Unlike DNA tests, which can only predict the likelihood of someone having a disease, RNA tests show what is actually happening at a cellular level. 

IMAGE COURTESY OF IQUITY

IMAGE COURTESY OF IQUITY

“When we look at RNA in blood, we’re looking at a snapshot of what’s actually taking place at that moment inside the patient’s blood cells,” explained Chase Spurlock, CEO of IQuity. “Using that information, we can decipher those molecular communication patterns, those RNA signals that are taking place, and figure out does it look like fibromyalgia syndrome or does it look like something else?

“In the case of fibromyalgia, we completed our clinical validation studies and our accuracy is at 94 percent and the sensitivity and specificity are greater than 90 percent as well. So, it’s a highly actionable test.” 

The National Institutes of Health estimates that about 5 million Americans suffer from fibromyalgia, a poorly understood disorder characterized by deep tissue pain, fatigue, headaches, mood swings and insomnia. It often takes years for a patient to be diagnosed with fibromyalgia and some doctors still refuse to recognize it as a disease.

In 2013, California-based EpicGenetics launched the first fibromyalgia blood test. The FM/a test looks for chemokines and cytokines, which are protein molecules produced by white blood cells. Fibromyalgia patients have fewer chemokines and cytokines than healthy people, according to EpicGenetics, and have weaker immune systems as a result. Critics say the FM/a test is unreliable and the same molecule levels can be found in people with other disorders, such as rheumatoid arthritis.

Spurlock says RNA testing is more specific and accurate than DNA or other blood tests used to diagnose autoimmune conditions. 

“I think what this test will do is allow for clarity and efficiency in the provider-patient relationship,” he said. “Once we receive the blood samples here, our lab technicians process the sample and we report the result back within a week.” 

Last year IQuity launched blood tests to diagnose multiple sclerosis and irritable bowel syndrome (IBS). It hopes to further develop the science to diagnose other autoimmune disorders.

Study Finds Little Evidence Shock Therapy Works

By Pat Anson, Editor

There is little evidence that electric shock therapy is an effective treatment for fibromyalgia, headache, degenerative joint pain and other chronic pain conditions, according to a new study by researchers at the Department of Veterans Affairs.

Cranial electric stimulation (CES) uses electrodes placed on the head to send small electric shocks to the brain to stimulate neurotransmitters.  Consumer interest in the therapy is increasing and several manufacturers make portable CES devices for home use -- such as the Fisher Wallace stimulator and Alpha-Stim AID -- marketing them as a treatment for pain, depression, anxiety and insomnia.

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But in a review of 26 clinical trials published in the Annals of Internal Medicine, researchers found “limited evidence” to support the use of CES to treat these medical conditions. Many of the studies were small, had questionable validity and the reported results were often inconsistent. Some studies suggested that CES therapy could help patients with depression and anxiety, but the VA researchers say better studies were needed to prove it.

“The evidence for the effectiveness and safety of CES is sparse. Low-strength evidence suggests a beneficial association in patients with anxiety and depression. The intervention is probably safe, but strength of evidence is low,” wrote lead author Paul Shekelle, MD, of the West Los Angeles Veterans Affairs Medical Center.

In an editorial also published in the journal, a physician who uses CES therapy on his patients called the study findings “disappointing,” but said he and his colleagues would probably keep using the devices.

“I am not sure what my hospital will do with the information from this review. I know I will be less enthusiastic about recommending CES; however, I doubt that we will stop using it,” wrote Wayne Jonas, MD, of Samueli Integrative Health Programs in Alexandria, VA.

“When one of my patients, who had chronic pain, depression, and insomnia, finished her first CES treatment, she said she loved it. ‘I felt really relaxed,’ she said. ‘Can I have one of these at home?’ Our policy is to have patients try the treatment in the clinic at least 3 times. If it improves pain, depression, or insomnia, the patient can apply to get a home machine.”

The Food and Drug Administration first approved the use of CES in 1978 to treat depression, anxiety and insomnia. Because of that initial approval, the CES devices on the market today have not been required to prove their safety and effectiveness. The devices can be easily purchased online, but a prescription is required in the U.S.