Researchers Question Value of Brain Imaging

By Pat Anson, Editor

An international team of researchers is recommending against the use of brain imaging as a diagnostic test for chronic pain, saying the tests are “inappropriate and unethical.”

"It's not possible at this point in time to say with any degree of certainty that a person does or does not have chronic pain based on brain imaging," said Karen Davis, PhD, senior scientist at the Krembil Research Institute and a professor at the University of Toronto.

"The only way to truly know if someone is in pain is if they tell you because pain is subjective and it is a complex experience. No brain scan can do that."

In recent years, technological advances in brain imaging have led to an increased use of functional magnetic resonance imaging (fMRI) to search for brain-based biomarkers for chronic pain.

Demand for brain imaging is also growing for legal purposes, including the development of a potential “lie detector” test for chronic pain.

"Use of such tools would be inappropriate and unethical," said Davis. "This technology is not foolproof. There are vast issues of variability between people and even within a person at different times. As a result, brain imaging must not be used as a lie detector for chronic pain."

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Davis and her colleagues say brain-based biomarkers should only be used to supplement -- not replace -- a patient’s own reports of pain, even if testing is improved and valid protocols developed. Their recommendations were published in the journal Nature Review: Neurology.

"We are working towards biomarkers for chronic pain, but the goal is not as a lie detector test but rather to help provide personalized pain treatment options for patients," Davis. “People outside of the field of imaging might be disappointed, but the fact of the matter is the technology cannot be used to support or dispute a claim of chronic pain."

According to a 2015 study at the University of Michigan, one in eight visits to a doctor for a headache or migraine end up with the patient going for a brain scan. Often a doctor will order an fMRI to ease a patient’s fear that they may have a brain tumor or some other serious health problem. Doctors may also order a test to protect themselves in case of a lawsuit. About 1 to 3 percent of brain scans of patients with repeated headaches identify a cancerous growth or aneurysm.

University of Michigan researcher Brian Callaghan, MD, identified 74 neurological tests and procedures that are often unnecessary. Many involve the use of imaging.

“The two biggest areas that might be done more than they should are imaging for low back pain and imaging for headaches,” Callaghan said. “It’s a big problem and it costs a lot of money – we’re talking a billion dollars a year on just headache imaging.”

Other researchers believe brain imaging can be used as a valuable diagnostic tool. In a small study at the University of Colorado Boulder, researchers used fMRIs to discover a “brain signature” that identifies fibromyalgia with 93 percent accuracy. They found three neurological patterns in the brain that correlate with the pain hypersensitivity typically experienced with fibromyalgia.

Lady Gaga: Chronic Pain Patients Shouldn’t Feel Alone

By Pat Anson, Editor

It’s rare for a celebrity to talk openly their health problems, but Lady Gaga is speaking up about her battle with fibromyalgia and chronic hip pain. 

During a news conference at the Toronto Film Festival promoting her Netflix documentary Gaga: Five Foot Two, Lady Gaga fought back tears as she described how “liberating” it was for the film to cover her decade-long struggle with chronic pain.

“There is an element and a very strong piece of me that believes pain is a microphone. My pain does me no good unless I transform it into something that is. So I hope people watching it who do struggle with chronic pain know that they're not alone. It's freeing for me ... and I want people that struggle with it to hear me,” the 31-year old entertainer said.

“There is a degree of self-deprecation and shame with feeling in pain a lot. And I want people that watch it — that think there's no way I live (with chronic pain) because they see me dance and sing and don't think that could possibly be — to know I struggle with things like them. I work through it and it can be done. We have to stick together. I don't have to hide it because I'm afraid it's weak.”

In a teaser for the film, there are shots of Lada Gaga wincing in pain as she receives injections on a surgical table. 

"It was incredibly hard, on a basic fundamental human level, to be near someone experiencing pain like that. There's nothing you can do, beyond filming," said director Chris Moukarbel.

"I felt I needed to continue to roll. She was very aware of people struggling with similar chronic pain. She's not even sure how to deal with it.”

a scene from "GAGA: Five FOOT TWO"

a scene from "GAGA: Five FOOT TWO"

“It's a part of me, and I'm grateful to Chris for caring. The compassion is overwhelming. That's why it makes me emotional. It's very touching,” Lady Gaga said.

The singer’s struggle with chronic pain reportedly began with physical and emotional trauma from a sexual assault. She later suffered a hip injury, but hid her pain from fans and her own staff until she required surgery in 2013. The singer now reportedly suffers from synovitis, an inflammation of the joint that can be caused by overuse or injury.

“I hid my injury until I couldn’t walk,” Lady Gaga told Arthritis Magazine in March. “I had a tear on the inside of my joint and huge breakage.

Lady Gaga also recently acknowledged that she has pain from fibromyalgia.

"I wish to help raise awareness & connect people who have it," she wrote in a Tweet.

"Thought ice helped #Fibromyalgia. I was wrong & making it worse. Warm/Heat is better. Electric Heated Blanket, Infrared Sauna, Epsom Baths."

Lady Gaga fibro.png

Last November, Lady Gaga posted on Instagram an image of herself sitting in a sauna wrapped in an emergency blanket. Months later, she set aside her pain and soared around a stadium during a spectacular halftime show at theSuper Bowl.  

The singer told reporters in Toronto she was going to take a break from performing and  “slow down for a moment, for some healing.”  That prediction came true days later when she cancelled plans for a concert in Brazil because of severe pain.

"I was taken to the hospital its not simply hip pain or wear & tear from tour, I'm in severe pain. I'm in good hands w/ the very best doctors," she wrote on Twitter. "Brazil, I'm devastated that I'm not well enough 2 come to Rock In Rio. I would do anything 4 u but I have to take care of my body right now."

Lyrica and Neurontin Face More Scrutiny

By Pat Anson, Editor

The safety and effectiveness of Lyrica (pregabalin) and Neurontin (gabapentin) – two non-opioid drugs widely used to treat chronic pain – are drawing new scrutiny from researchers and doctors who believe the medications are over-prescribed.

In a study published in PLOS Medicine, Canadian researchers say there is little evidence that gabapentinoids – a class of nerve medication that includes Neurontin and Lyrica – are effective in treating chronic low back pain. In their review of 8 clinical studies, the researchers also found the drugs have a “significant risk of adverse effects.”

Lyrica and Neurontin are commonly prescribed for fibromyalgia and neuropathic pain, but the researchers say the drugs are increasingly prescribed for chronic back pain, even though there is “no clear rationale” for it.

"Despite their widespread use, our systematic review with meta-analysis found that there are very few randomized controlled trials that have attempted to assess the benefit of using gabapentin or pregabalin in patients of chronic low back pain," wrote lead author Harsha Shanthanna, MD, an assistant professor at McMaster University in Hamilton, Ontario.

"They necessitate prolonged use and are associated with adverse effects and increased costs. Recent guidelines from the National Health Service (NHS), England, expressed concerns on their off-label use, in addition to the risk of misuse.”

Shanthanna and his colleagues found that gabapentin showed “minimal improvement” in back pain compared to a placebo and pregabalin was “inferior” compared to other analgesics. There were no deaths or hospitalizations reported in any of the studies, but both drugs were associated with increased risk of dizziness, fatigue, visual disturbances, and diminished mental activity.

Lyrica and Neurontin are both made by Pfizer and are two of the company’s top selling drugs, generating billions of dollars in sales annually. Lyrica is approved by the FDA to treat diabetic nerve pain, fibromyalgia, post-herpetic neuralgia caused by shingles, and spinal cord injuries. It is also prescribed off-label to treat other chronic pain conditions, including lower back pain.

Neurontin is only approved by the FDA to treat epilepsy and neuropathic pain caused by shingles, but is widely prescribed off label to treat depression, ADHD, migraine, fibromyalgia and bipolar disorder. According to one estimate, over 90% of Neurontin sales are for off-label uses. Pfizer has paid $945 million in fines to resolve criminal and civil charges that it marketed Neurontin off-label to treat conditions it was not approved for.

Sales of pregabalin and gabapentin have risen steadily in recent years, in part because of CDC prescribing guidelines that recommend the two drugs as alternatives to opioid pain medication. About 64 million prescriptions were written for gabapentin in the U.S. last year, a 49% increase since 2011.

“We believe… that gabapentinoids are being prescribed excessively — partly in response to the opioid epidemic,” Christopher Goodman, MD, and Allan Brett, MD, recently wrote in a commentary published in The New England Journal of Medicine. “We suspect that clinicians who are desperate for alternatives to opioids have lowered their threshold for prescribing gabapentinoids to patients with various types of acute, subacute, and chronic noncancer pain.

“Patients who are in pain deserve empathy, understanding, time, and attention. We believe some of them may benefit from a therapeutic trial of gabapentin or pregabalin for off-label indications, and we support robust efforts to limit opioid prescribing. Nevertheless, clinicians shouldn’t assume that gabapentinoids are an effective approach for most pain syndromes or a routinely appropriate substitute for opioids.”

FDA Seeks Public Comment on Abuse of Lyrica

The U.S. Food and Drug Administration announced last week that it was seeking public comment on reports that pregabalin is being abused. The FDA action was in response to a formal notification from the World Health Organization (WHO) that it may place international restrictions on pregabalin to reduce the risk of abuse and diversion. The FDA has until September 30 to respond to WHO.

Reports indicate that patients are self-administering higher than recommended doses to achieve euphoria, especially patients who have a history of substance abuse, particularly opioids, and psychiatric illness. While effects of excessively high doses are generally non-lethal, gabapentinoids such as pregabalin are increasingly being identified in post-mortem toxicology analyses,” the FDA said in a notice published in the Federal Register.

Pregabalin is already classified as Schedule V controlled substance in the U.S. under the Controlled Substances Act, which means the DEA considers it to have a low potential for abuse.

The idea that Lyrica and Neurontin are being abused is surprising to many patients and doctors, but there are growing signs the drugs are being used recreationally.

Both Lyrica and Neurontin have been linked to heroin overdoses in England and Wales, where prescriptions for both drugs have soared in recent years.  Addicts have apparently found the medications enhance the effects of heroin and other opioids.

A small study of urine samples from patients being treated at U.S. pain clinics and addiction treatment centers found that one in five patients were taking gabapentin without a prescription.

Gabapentin and pregabalin are also being abused by prison inmates, according to Jeffrey Keller, MD, chief medical officer of Centurion, a private corrections company. 

“Gabapentin is the single biggest problem drug of abuse in many correctional systems,” Keller recently wrote in Corrections.com. “There is little difference (in my opinion) between Lyrica and gabapentin in both use for neuropathic pain or for abuse potential.”

Pfizer did not respond to a request for comment.

Brain Scans Link Fibromyalgia and Pelvic Pain

By Pat Anson, Editor

Fibromylagia and urological pelvic pain would seem to have little in common. The former causes widespread body pain, while the latter is marked by chronic inflammatory pain in the bladder or prostate.

But researchers at the University of Michigan have stumbled upon something that both conditions share – besides being difficult to treat.

While examining MRI brain scans of over 1,000 participants enrolled in the Multidisciplinary Approach to the Study of Chronic Pelvic Pain Research Network  -- also known as the MAPP study – they found that people with fibromyalgia or chronic urological pelvic pain both have increased “gray matter” in their brains. Gray matter is tissue in the brain that helps transfer signals between nerves.

"Interestingly, when we put these individuals into the brain imaging scanner, we found that those who had widespread pain had increased gray matter and brain connectivity within sensory and motor cortical areas, when compared to pain-free controls," says Richard Harris, PhD, an associate professor of anesthesiology and rheumatology at Michigan Medicine.

Harris and colleagues want to know if widespread pain, thought to be a marker of centralization in the nervous system, actually originates in the brain. So it was a bit of a surprise to find additional gray matter in the brains of people with urological pelvic pain, a condition that can be caused by interstitial cystitis or chronic prostatitis.

"What was surprising was these individuals with widespread pain, although they had the diagnosis of urological chronic pelvic pain, were actually identical to another chronic pain disorder: fibromyalgia," said Harris.

In addition to the MRI scans, study participants were also asked to draw on a body map where they were experiencing pain. Many of those with pelvic pain indicated they had widespread body pain.

"This study represents the fact that pelvic pain patients, a subset of them, have characteristics of fibromyalgia," Harris says. "Not only do they have widespread pain, but also they have brain markers indistinguishable from fibromyalgia patients."

Harris hopes the study will lead to new ways of treating chronic pain -- as there might be similarities across pain conditions if both show widespread pain.

"We think that this type of study will help treat these patients because if they have a central nerve biological component to their disorder, they're much more likely to benefit from targets that affect the central nervous system rather than from treatments that are aimed at the pelvic region," Harris said.

Insurance Claims Climb for Lyme Disease

By Pat Anson, Editor

Private insurance claims with a diagnosis of Lyme disease have soared in the U.S. over the past decade, according to a new report by FAIR Health, a nonprofit that tracks healthcare costs and insurance trends.

Lyme disease is a bacterial illness spread by ticks. It can also lead to other chronic pain conditions such as joint and back pain, chronic fatigue, fibromyalgia and neuropathy.

Fair Health analyzed a database of 23 billion private insurance claims from 2007 to 2016, and found that claims with a diagnosis of Lyme disease increased by 185 percent in rural areas and 40 percent in urban areas.

A recent CDC study also found the number of Lyme disease cases increasing, with nearly 40,000 confirmed and probable cases in 2015.

"Lyme disease is growing as a public health concern,” said FAIR Health President Robin Gelburd

Although Lyme disease historically has been concentrated in the Northeast and upper Midwest, the FAIR Health study suggests that it is spreading geographically. In 2007, insurance claims with diagnoses of Lyme disease were highest in New Jersey, Rhode Island, Connecticut, Massachusetts and New York.

By 2016, the top states were Rhode Island, New Jersey, Connecticut, North Carolina and New York -- with the emergence of North Carolina suggesting significant expansion to a new region.

Summer is the peak season for Lyme disease, with insurance claims more common in rural than in urban settings, according to the FAIR Health report. In the winter and early spring (December through April), claims involving Lyme disease were reported more often in urban than rural settings.

Age is also a differing factor in rural and urban environments. In rural settings, claims with Lyme disease diagnoses were more common for middle-aged and older people. Patients aged 41 years and older accounted for nearly two-thirds of the rural diagnoses. In urban populations, younger individuals with Lyme disease accounted for a higher percentage of claims.

Lyme disease is usually treated with antibiotics, but some patients experience complications that lead to Lyme disease syndrome (PTLDS), with long-term symptoms such as fatigue, muscle and joint pain and cognitive issues. Autoimmune diseases have also been associated with chronic Lyme disease.

Left untreated, Lyme disease can lead to serious chronic conditions, as Sarah Elizabeth Hirschle shared with us recently.

For patients with a Lyme disease diagnosis, FAIR Health reported the most common subsequent diagnoses were:

  • Joint pain (dorsalgia, low back pain, hip and knee pain)
  • Chronic fatigue  
  • Soft tissue disorders (myalgia, neuralgia, fibromyalgia)
  • Hypothyroidism
lyme disease rash

lyme disease rash

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

To see some tips from the CDC on how to avoid tick bites, click here.

The Link Between Chronic Pain and Depression

By Lana Barhum, Columnist

There are nearly 40 million American adults living with severe or significant chronic pain, according to the National Institutes of Health. Chronic pain affects more people than cancer, diabetes and heart disease combined.   

Chronic pain is devastating and can be a challenge to treat. Pain also causes depression and depression leads to decreased function, poor treatment outcomes and further healthcare costs. About half of people with chronic pain are also depressed, according to a recent study in the Journal of Affective Disorders.

"The dual burden of chronic physical conditions and mood and anxiety disorders is a significant and growing problem," wrote senior author Silvia Martins, MD, associate professor of Epidemiology at the Mailman School of Public Health.

Pain experiences are different for each person and your response to chronic pain depends on how you feel pain, and thoughts and behaviors related to your underlying pain conditions.  

When pain invades every aspect of your life and leaves you uncertain of the future, anxiety, sadness, anger and grief are imminent. For many, the burden is so difficult, it leads to major depressive disorder, also known as clinical depression.

Research shows the highest rates of clinical depression are in people with fibromyalgia. According to a study in Pain Research and Treatment, people with fibromyalgia have a 90% chance for depressed symptoms and up to 86% risk for major depressive disorder. 

What is Clinical Depression?

Clinical depression is more complicated than dealing with sadness and grief. This type of depression leaves you unable to focus on work, get good quality sleep, eat well, or enjoy time with friends and loved ones.  Some people experience clinical depression once, but many have experienced it several times during their life.

Some symptoms of clinical depression are:

  • Fatigue and loss of energy
  • Feelings of guilt and worthlessness
  • Struggles with concentration and decision making
  • Sleep problems, including insomnia or excessive sleeping
  • Disinterest in almost all activities
  • Constant thoughts of dying and suicide
  • Significant weight loss or gain

My Experience with Clinical Depression

Depression has been a frequent visitor to my chronically painful life, but the first time I was formally diagnosed with clinical depression was 2011.  It had been 3 years since I was diagnosed with rheumatoid arthritis and fibromyalgia, two painful and life-altering conditions.  Not only was pain dominating my life, there was so much more happening because of pain, that I couldn’t handle it all. 

I knew I was struggling, but I didn’t know the extent.  I was crying for no reason, not sleeping, and my mind was constantly racing.  And I thought about death – not contemplating suicide but that death had to be better than living with real physical and emotional pain.

It was my rheumatologist who recognized the extent of my depression, prescribed an anti-depressant and referred me to a therapist. Talk therapy helped me better handle my feelings about living with pain and other obstacles, and the medication managed the chemical part of depression. Eventually and with time, I found some clarity.

There have been other times in more than nine years of living with illness and pain that depression has gotten its clutches on me. But it was not until last summer that I had another episode of clinical depression.  I unexpectedly lost my mother in late August and that loss shook me to my very core and brought back my old friend depression with it.

Preventing Recurrent Depression

Anyone who has suffered from at least one episode of depression is at risk for another, and the risk is higher in people who have been diagnosed with clinical depression. According to a 2104 report from the University Medical Center Groningen in The Netherlands, recurrent depression is more common in people who live with pain.

The best way to treat and prevent recurrent depression, according to a discussion in the Primary Care Companion to The Journal of Clinical Psychiatry, is through maintenance therapy that includes talk therapy and medication, and where medication is decreased as the depression lessens.

Depression does not have to last forever and it doesn’t have to consume your life. But when you are dealing with the sadness, anger, grief and pain, relief seems unimaginable.  My experience with clinical recurrent depression and pain has taught me that there is always hope.  It won’t be easy, but it’s not impossible.

If you want to manage your depression and prevent it from coming back, it is important to take a proactive approach.  Here’s how:

Early Recognition. If you have been clinically depressed before, you know that depression comes and goes.  If you find you are feeling exhausted, hopeless, distressed and struggling to be productive daily, reach out to your doctor or therapist to find ways to keep symptoms from worsening.  

Learn Your Triggers. For most of us, pain is a stressor and increases the chance being depressed.  But depressed feelings and anxiety also worsen pain. Therefore, it’s important to focus on minimizing things that exacerbate pain.

Communication.  Many people with chronic pain do not reach out to their doctors because they don’t think there is anything that can be done or they feel that if their pain levels are managed, then their depression will go away. But depression doesn’t just go away and it only worsens your pain levels.  Getting treatment is the only way to a full recovery and to prevent depression from returning.

Please know you are not alone.  There are millions of people with chronic pain and clinical recurrent depression. Reach out and seek support, whether it is online, in a local community support group or from others – a pastor, a mental health professional, a friend or loved one.   Your mental health is just as important as your physical and it is important to treat it as such.

Lana Barhum lives 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.

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.

Can Vitamin D and Good Sleep Reduce Pain?

By Pat Anson, Editor

Vitamin D supplements, along with good sleeping habits, could help manage chronic pain from fibromyalgia, rheumatoid arthritis, back pain and other conditions, according to a new study.

The importance of vitamin D – the “sunshine vitamin” – in maintaining bone strength and overall health has long been known.  But recent research has focused on the role it plays in inflammation, musculoskeletal pain and sleep disorders.

“Vitamin D status seems to have an important role in the bidirectional relationship observed between sleep and pain,” said senior author Dr. Monica Levy Andersen in the Journal of Endocrinology. “We can hypothesize that suitable vitamin D supplementation combined with sleep hygiene may optimize the therapeutic management of pain-related diseases, such as fibromyalgia."

Andersen and her colleagues at Universidade Federal de Sao Paulo in Brazil reviewed 35 clinical studies of vitamin D, and concluded that vitamin D supplements could increase the effectiveness of pain treatments by stimulating an anti-inflammatory response.

"This research is very exciting and novel. We are unraveling the possible mechanisms of how vitamin D is involved in many complex processes, including what this review shows - that a good night's sleep and normal levels of vitamin D could be an effective way to manage pain," said Sof Andrikopoulos, assistant professor at the University of Melbourne and Editor of the Journal of Endocrinology.

Sources of Vitamin D include oily fish and eggs, but it can be difficult to get enough through diet alone. Ultraviolet rays in sunlight are a principal source of Vitamin D for most people.

Several recent studies have found an association between chronic pain and low levels of Vitamin D in the blood.  Researchers at National Taiwan University Hospital found low levels of serum vitamin D in over 1,800 fibromyalgia patients. Danish researchers have also found an association between lack of sunlight and multiple sclerosis.

But some question quality of the studies and whether Vitamin D supplements do any good.

“Evidence does not support vitamin D supplementation for the treatment of multiple sclerosis and rheumatoid arthritis or for improving depression/mental well-being,” wrote Michael Allan, a professor of Family Medicine and director of Evidence Based Medicine at the University of Alberta in the Journal of General Internal Medicine.

Allan says much of the research is of low quality. He doesn’t dispute the overall health benefits of Vitamin D – such as building strong bones and teeth -- but thinks taking supplements is unnecessary and could even be harmful in large doses.

"The 40 year old person is highly unlikely to benefit from vitamin D," said Allan. "And when I say highly unlikely, I mean it's not measurable in present science."

Readers Sound Off on Fibromyalgia Drugs

By Lana Barhum, Columnist

In my previous column, “Lyrica, Cymbalta and Savella: Do They Work?” I shared research studies and my own experience with the three medications approved for use in treating fibromyalgia.

Clinical studies on all three drugs don’t seem to offer enough creditable evidence that they are effective in managing fibromyalgia symptoms.  Moreover, they carry very harsh side effects, including weight gain, edema, nausea, headaches, vertigo, sleep issues, and changes in blood pressure.

My experience was similar. Lyrica, Cymbalta and Savella were ineffective for me, and had some tough and life-altering side effects.

It makes me wonder why doctors are still prescribing these medications and why the Food and Drug Administration continues to allow them to stay on the market. 

In 2012, German researchers aimed to assess the benefits and harms of Cymbalta and Savella in treating fibromyalgia.  Ten studies with over 6,000 fibromyalgia patients were reviewed. 

The results were that 22 percent of patients reported substantial relief and 21 percent had to quit treatment due to unpleasant side effects.

In reader comments on our website and Facebook page, many of you had comparable experiences:

“Tried all 3…nothing but weight gain and dizziness. No pain relief. Still haven't found anything that works.”

“I've had multiple spinal surgeries and fusions, and have severe nerve damage. And severe chronic pain. So, I've taken all three of these meds. Without success.”

I will not discount the fact that Lyrica, Cymbalta and Savella work for some people, but they appear to help only about 20 to 30 percent of patients who try them:

“I take one 60mg (of) Cymbalta a day, and it doesn't take away all the pain, but it does make it a bit more bearable.”

“I am using all three. There is relief but in moderation.”

“I have been on Lyrica since 2007 and do have relief of my Fibro pain. I am also on Cymbalta, a muscle relaxant and pain med that really (does) make a difference with my Fibro, arthritis and osteo pain.”

“Tried Savella, no good. Lyrica did not decrease pain enough to continue. I've used Cymbalta and had good results. Best results have been from using Gabapentin (Neurontin) since 1996, up to 3600 mg daily.”

“I'm back on Lyrica and Cymbalta. I know of the side effects with this medicine but it is the only option that remotely helps.”

The effectiveness of Lyrica and Cymbalta, in particular, has been hyped up with aggressive advertising by their manufacturers. And while research and patient experience show improvement on any of the medications is spotty at best, doctors continue to prescribe them.  This is yet another example where the medical field, in general, has not done a good job in treating, understanding or advocating for fibromyalgia patients.          

Side effects reported by readers to the three drugs include dizziness, mood changes, cognitive issues, swelling, sleep issues, weight gain, increased blood pressure, blackouts and more.  Many of these side effects have a detrimental effect on the daily lives of fibromyalgia sufferers – as if our lives were not difficult enough.

“Lyrica was the worst! I became a sleep-walking zombie. I was so out of it at night that I rarely made it to bed laying down. I would find myself in weird places asleep, such as with my head resting on the faucet in the bathroom sink. Or, I would sleepwalk and fall, like down the stairs. Certainly not good for helping my pain!”

“Lyrica did nothing for me. Cymbalta changed my personality completely. I became mean and hateful. When I asked the (doctor) about it, he's like, yeah that can happen.”

“I have taken Neurontin, Lyrica, Savella, and currently take Cymbalta. Neurontin gave me bad nausea, and the feeling of bugs crawling all over my body. Lyrica made me gain a lot of weight, and didn't help my pain at all. The Savella was the worst for me, it gave me very bad suicidal thoughts, so bad I had to stop taking it, it also never helped with pain.”

If only there was an ideal treatment for fibromyalgia -- one that would offer real relief from the worst symptoms and with few side effects.  But such a treatment could only come with a real understanding about the causes and symptoms of fibromyalgia, and I don’t feel medical research has gotten there yet.

The worst part of my experience with fibromyalgia is trying countless treatments to no avail. And there is nothing worse than being told, as I was, by a medical provider that if you expect real relief, you should also expect side effects and learn to cope with them. That statement shows what little understanding and empathy the medical community has about fibromyalgia, its process, and its difficulties.

I wish I had some good treatment advice to offer, but the fact is, like so many of you, I am exhausted. Years of trying medication after medication has left me weary of the medical community and the companies that manufacture fibromyalgia drugs. 

I have accepted defeat and refuse to try anything new.  Neurontin, Cymbalta, and muscle relaxers offer me some relief from nerve pain, depression, and muscle spasms, so I continue to take them.   Even so, I still live with widespread muscle and tissue pain, and a whole host of other symptoms fibromyalgia brings in its wake.

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

To learn more about Lana, visit her website.

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

Lyrica, Cymbalta and Savella: Do They Work?

By Lana Barhum, Columnist

If you have fibromyalgia, chances are your doctor has prescribed one or more of the three drugs approved for fibromyalgia by the U.S. Food and Drug Administration (FDA).   It is also likely you have been disappointed when they didn’t work and by the side effects they caused.

I have tried Lyrica (pregabalin), Cymbalta (duloxetine) and Savella (milnacipran). My experience is they don’t work well and clinical research doesn’t offer up enough credible evidence that they do.

Patient feedback on these medications is actually more telling than recent studies.  Just check any fibromyalgia online forum and you will find your unpleasant experiences with these medications aren’t unique and shared by many.

Lyrica

Lyrica was developed by Pfizer as a treatment for epilepsy, but it is now widely prescribed for many different types of pain. Lyrica was approved by the FDA in 2007 as the first drug specifically for the treatment of fibromyalgia. Pfizer notes on its website that Lyrica “significantly relieves fibromyalgia pain and improves physical function” in fibromyalgia patients.  But does it really?

An initial study from 2005, with results published in Arthritis & Rheumatology, found Lyrica to be effective at relieving pain in only 29% of the 529 fibromyalgia patients in the study group. 

A major shortcoming of the study was that weight gain affected 10% of the study participants.

What was also interesting about the Arthritis & Rheumatology study is that a large number of participants dropped out due to Lyrica's side effects, which included edema, dry mouth, weight gain, infection, increased appetite and constipation.

A 2014 study of out of the University of Calgary, with results published in the journal Therapeutic Advances in Drug Safety,  also found that Lyrica causes edema and weight gain in some patients. 

Those side effects, especially the weight gain, aren’t worth it for a drug that doesn’t seem to work well for most people. You would get more benefit from dietary changes for fibromyalgia than with Lyrica - at least that was my experience. 

All I got from taking Lyrica was a 40 pound weight gain that took me two years to take off. I made the mistake of staying on it for too long, believing that it would one day work for me.

Cymbalta

Cymbalta was originally developed and marketed by Eli Lilly as a treatment for depression. You may even remember some of the commercials for it. In 2008, Cymbalta become the second drug approved by the FDA to treat fibromyalgia.

While Cymbalta doesn’t have stellar ratings amongst fibromyalgia patients, it does outperform Lyrica in my opinion. Initial trials, with results published in The Primary Care Companion to The Journal of Clinical Psychiatry, show that over a third (36%) of study participants reported at least a 50% reduction in pain, based on a dosage of 60 mg once or twice per day.

A report published in the journal Expert Review of Clinical Immunology found that many participants dropped out of Phase I, II, and III trials of Cymbalta due to side effects, including nausea, headache, and sleep issues. 

Cymbalta has given me some pain relief over the years, but I have also made changes to my diet and lifestyle which may have helped as well.  If Cymbalta has helped me with anything, it is managing the depressed feelings fibromyalgia often leaves in its wake.

Savella

My Savella experience was far worse than my experiences with Lyrica and Cymbalta.  I could only stay on it for two weeks because the side effects were more than I could handle. Dizziness, vertigo, nausea, fatigue, and severe headache were a few of the side effects that stood out.  And I didn’t get any fibromyalgia pain or symptom relief.

Savella was developed by Forest Laboratories specifically for fibromyalgia and was approved by the FDA in 2009.

Like Lyrica and Cymbalta, studies confirm Savella’s poor performance. One double-blind study, reported in the journal Pharmacy & Therapeutics, found that only about one in four fibromyalgia patients (26%) were getting pain relief. 

The rate of discontinuation due to Savella’s side effects and treatment failure was also high -- nearly 43 percent.

In 2010, the consumer advocacy group Public Citizen petitioned the FDA to remove Savella from the market because it increased blood pressure in patients who didn’t have high blood pressure to start with. The group also argued Savella posed an increased risk for suicidal thoughts.

The FDA responded last year and denied Public Citizen’s petition, but said it would continue to monitor the safety of Savella.

My Thoughts

The only medication that I have seen that offers real improvement is Pfizer’s Neurontin (gabapentin), which is prescribed “off label” because it is not specifically approved to treat fibromyalgia by the FDA. Neurontin has helped my nerve pain and I also take muscle relaxers as needed, as I am frequent sufferer of muscle cramps and spasms. 

Studies have confirmed Neurontin’s effectiveness in treating fibromyalgia pain and improving sleep and fatigue. One double-blind study, with results published in Arthritis & Rheumatism, found that over half (51%) of fibromyalgia patients were finding relief with Neurontin.   

That’s not bad for a medication that was originally developed to manage seizures and whose formula has been the same since 1993. While it has helped me, I certainly understand Neurontin hasn’t helped everyone. There are even reports of Neurontin being abused by addicts. 

I am not sure why the makers of Lyrica, Cymbalta and Savella continue to market medications that don’t offer most people real results.  Yet, these medications remain available and doctors are still prescribing them to treat fibromyalgia. 

Let's just hope there are new fibromyalgia drugs on the horizon that actually work and give us real and reliable symptom and pain relief.

What has been your experience with Lyrica, Cymbalta and Savella?

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

To learn more about Lana, visit her website.

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

9 Lessons From 9 Years of Living with Chronic Pain

By Lana Barhum, Columnist

In September 2008, I was 32 years old, married, with a newborn and a nine year old, when I learned I had fibromyalgia and rheumatoid arthritis. Chronic pain and illness suddenly dominated my world.

That was almost nine years ago and I have learned a lot from this often unfair experience. It seems chronic pain and illness have much to teach us. Here are 9 lessons I’ve learned:

1) I am Stronger than I Ever Imagined

There was a time when I didn’t think I could ever meet the challenges imposed by pain and illness. But you don’t know how strong you are until your world comes crashing down and you are left to deal with the aftermath.

The human spirit and body have a high tolerance for pain.  Just when you think you cannot possibly live with it, you find you can.  I have had some pretty painful experiences – some so bad I wished for death.

But I am still here – alive and well. Because no matter what, I am stronger than this. And guess what? So are you.

2) Acceptance is Vital

I spent the first few years of being sick and in pain living in denial.  That choice took its toll on my physical and emotional health.  It was not until I truly accepted my health challenges that I was able to move past them and focus on having a somewhat normal life.

Acceptance also means you are an active participant in your health.  Take your medications and your doctor's advice, keep moving, and focus on bettering your mental and physical health.

I still have days where acceptance is a struggle, but I choose to remind myself what I am feeling isn't permanent.  

3) Don't Take Life So Seriously

As it turns out, there is more to life than being healthy.  You can still have a good, happy life even though you hurt and feel awful. 

There will be good days, bad ones, and even downright ugly ones. But you can still experience moments of happiness, enjoy life, and have meaningful relationships.  Illness and pain don’t define you or dictate your life.

Even at my sickest, I managed fill my life and my children's lives with joy and laughter.  Focusing on the good stuff, not taking life so seriously, and letting go of what you cannot control keeps you from shedding unnecessary tears.

4) Give Grief a Limit

The grief we often feel from chronic illness comes and goes. Like many of you, I have endured plenty of grief-filled moments.  I have been angry, sad, and even clinically depressed.

Grief is normal and natural, especially when your life is continually dominated by pain, sickness, and losses.  Give yourself permission to be angry about your pain, but don’t let those emotions take on a life of their own.

5) Life Can Be Unfair – Let Go

I know all too well that chronic illness and pain are unfair. If I could I have protected my health, I would have, but I couldn't.  And I couldn’t control the snowball effect that continued for several years after my diagnosis. All of it just simply goes back to life being unfair. It has nothing to do with health challenges.

I am learning to let go of what I wanted my life to be and to just focus on what it is now.  Things just happen – like a permanent injury or a chronic disease – that don’t have an explanation.   You can either focus your energy on dwelling on the unfairness or you can move on, let go and learn.

6) People Sometimes Let Us Down

I used to think chronic pain and illness were the worst things that happened to me, but it turns out they weren't.  Finding out that people don’t stick around when the going gets tough is far worse.

Some of my friends walked away.  My family didn’t understand.  And my marriage ended.  Before I got sick, I loved sharing my life with others.  But now that I am not sick and in pain daily, I don’t. People don’t always get that.  That makes maintaining relationships harder.

These days, I place my focus on creating a positive family life for my children and giving us the best life possible.  I don’t have a lot of time and energy to worry about others who don’t understand.   After all, this is MY life – pain, sickness and all - and I get to decide who is in it and who isn't.

7) This is Your Journey – No One Else's

After nine years, I am finally confident in my ability to manage this roller coaster ride alone.  Yes, I can sometimes rely on others to help and provide support, but at the end of the day, I decide the kind of person this life with pain and illness makes of me.

You may have all the support in the world, but you are the only one who can decide the direction this journey goes. Chronic pain can take so much if you let it.

Choose to make the best experience of this journey even when it hurts, and even it feels like you have got nothing left in you. Trust me when I say, “You have got this.”

8) Let Go of Your Fears

I was once afraid of what my life would become, but here I am nine years later and my fears were nothing but wasted time.  Interestingly, my health challenges took my life in directions I never anticipated and most of them have been good.

Don't miss out on the blessings of the present and future because you are dwelling on the past.  Stop being afraid because you can still have a bright future.

9) Never Give Up on Your Health and Happiness

My life changed the day my doctor said, "You have rheumatoid arthritis and fibromyalgia."  I went from being a healthy young mother to someone with an uncertain future.  I don’t take anything in my life for granted anymore and I treasure each day as the gift it truly is.

And the things that I thought I had to give up on – my dreams, watching my children succeed and grow into amazing human beings, and even finding love again – I was so wrong about.  All these things were possible despite chronic pain and illness. And they continue to be.

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

To learn more about Lana, visit her website.

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