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."

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"

“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."

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

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.

Common Medical Conditions Linked to Fibromyalgia

By Lana Barhum, Columnist

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Living with Fibromyalgia and Co-Existing Conditions                 

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

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

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

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

To learn more about Lana, visit her website.

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

Does Changing Your Diet Help With Fibromyalgia?

By Lana Barhum, Columnist

Having lived with fibromyalgia most of my adult life, I know my diet may worsen or improve my pain and other fibromyalgia symptoms. I am not alone in this belief, but the research disagrees. 

Most studies have not shown any specific evidence that fibromyalgia patients should avoid certain foods or add any to their diets to manage symptoms.  Nonetheless, it is still a good idea to take a look at how some foods influence how you feel.

MSG, Gluten and Vitamin D

At least 42% of fibromyalgia patients have reported worsening symptoms after eating certain foods, according to a study in Clinical Rheumatology.  Other studies on fibromyalgia and diet have focused on food additives, gluten, and vitamin D, and found some evidence that they may affect fibromyalgia pain.  

A 2012 study published in Clinical Experimental Rheumatology, assessed fibromyalgia and irritable bowel syndrome (IBS) patients who had excluded monosodium glutamate (MSG) and aspartame from their diets.  After four weeks, 84% of the study participants reported their symptoms had improved by about a third.  Adding MSG back into their diets resulted in a return of symptoms.

The researchers concluded that MSG did, in fact, have an adverse effect on some fibromyalgia patients and removing it from their diets was an easy solution.

"This novel research implicates glutamate as a major adverse excitotoxin in some FM (fibromyalgia) patients. Dietary manipulation is a relatively simple and low cost non-pharmacological intervention that warrants further exploration," reported lead author Kathleen  Holton, PhD.

But another study, published in Rheumatology International, found no relationship between MSG and fibromyalgia pain and symptoms.  The researchers reported no symptom improvement in the group that removed MSG and aspartame from their diets and the group that did not.

While there has been little specific evidence pointing to gluten as a fibromyalgia trigger, some research shows patients respond well when they avoid eating gluten.  Spanish researchers reported in Rheumatology International that fibromyalgia patients who removed gluten from their diets showed notable improvements in pain and symptoms.                                                           

There may also be a link between fibromyalgia pain and low levels of vitamin D, according to a 2014 study out of Austria. That research, reported in the journal Pain, found that study participants who took vitamin D supplements experienced less pain and morning fatigue.   

A 2015 report from the journal Pain and Therapy, also makes a case for a link between Vitamin D deficiency and pain. "Significant improvements in assessment of sleep, mood, pain levels, well-being, and various aspects of quality of life with vitamin D supplementation have been shown,” said researchers Elspeth and Edward Shipton.

More research is needed to further determine if diet and fibromyalgia are actually related.  But doctors do agree eating healthy foods can help patients to feel better and tweaking your diet may improve symptoms.

Making Diet Changes

Here are some ways to help you figure out which foods help and which ones hurt.

Keep a Food Journal.  Many people with fibromyalgia have food sensitivities, but specific “trigger” foods will vary from person to person.  A good way to identify which foods worsen fibromyalgia symptoms and pain is to keep a food journal.  If you find your symptoms consistently worsen after eating certain foods, try eliminating those foods from your diet and see if your symptoms improve.

Eat Healthy. It makes sense for everyone to eat healthy, not just people with fibromyalgia.  Eat a diet that is rich in fruits and vegetables, whole grains, and lean proteins. 

A balanced diet will also give you more energy and improve overall health.

Pick the Right Foods. There are certain foods that may help improve fibromyalgia symptoms and minimize flares.  Vitamin D is one, as studies show deficiency can cause joint and muscle pain.

Vitamin D is one, as studies show deficiency can cause joint and muscle pain. Foods rich in vitamin D include fatty fish (tuna and salmon), dairy products fortified with vitamin D (orange juice, milk, and cereal), beef liver, and egg yolks. Foods containing omega 3 fatty acids, which are found in fatty fish, walnuts and flax seed, may also ease fibromyalgia symptoms by reducing soreness and inflammation.  

My Take

I am strong believer in taking your health into your own hands and experimenting with alternative treatments, including a healthy diet.  Through trial and error, I have figured out which foods help and which foods hurt as I continue to learn how to successfully cope with fibromyalgia. 

Aspartame (Nutrasweet), food additives (especially MSG), sugar, fructose, simple carbohydrates, caffeine, gluten, fried and junk food, dairy and nightshades (tomatoes, peppers, and potatoes) are all foods that I have either eliminated or minimized from my diet.  Cutting them out of my diet has made fibromyalgia flares less frequent. 

In addition, I take vitamin D supplements, since my levels are often low, and eat foods rich in omega 3 fatty acids, such as fish, walnuts, and eggs, to manage inflammation, as I also suffer from rheumatoid arthritis.

While I don’t know for certain if my diet is the reason for fewer flare-ups, I do know that avoiding certain foods and eating healthy ones benefits my overall health.  And when my body feels healthier, I am better able to cope with fibromyalgia pain and symptoms.

The specific foods that help and hurt will be different for you, but a healthy diet can help you manage fibromyalgia symptoms and pain and improve your health overall.  And, it is definitely worth a try to find out. 

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.

How to Cope With Fibromyalgia Fog

By Lana Barhum, Columnist

My day job in the legal field can be pretty demanding, involving numerous phone calls, emails, deadlines, and other verbal and written communications. Some days, fibromyalgia fog makes my job a whole lot harder. 

Whether it is memory issues, trying to find the right words, misplacing things, or transcribing phone numbers correctly, fibro fog can affect the quality of my work.

It also affects my personal life, sometimes leaving me forgetful, confused, flustered carrying on conversations, and even lost trying get to destinations often traveled.

Fibro fog is the term used to describe the cognitive difficulties associated with fibromyalgia. According to a 2015 review in Rheumatology International, some fibromyalgia patients reported that fibro fog is even more difficult to manage than their pain and fatigue.

At least half fibromyalgia patients “experience distressing subjective cognitive impairment,” according to a 2015 report in Arthritis Care and Research.  

Fibro fog can cause short term memory loss, distraction, forgetfulness, difficulty in carrying on conversations, inability to process new information and occasional disorientation.  In most cases, fibro fog is a mild symptom, but for some people it can be quite scary, especially for those used to functioning at very high levels.

Fibro fog can leave me temporally disorientated and unable connect my thoughts. My thoughts come in, but they are not being processed correctly, or in a way I can properly put into words. And that can be stressful and frightening.

Causes of Fibro Fog

The reasons for fibro fog are not well understood.  But doctors speculate fibro fog is a result of fibromyalgia patients' inability to get restorative sleep.

"Therefore they're chronically fatigued," says Corey Walker, MD, a rheumatologist at the Intermountain Health Care System in Logan, Utah. "Their minds aren't rested." 

Non-restorative sleep is the number one sleep issue among fibromyalgia patients. Even after getting a full night's sleep, you may still wake up feeling exhausted, or as if you have not slept at all. Up to 90% of fibromyalgia patients experience non-restorative sleep, according to a 2016 report in the Journal of Pain and Relief by researchers at Luigi Sacco University Hospital in Milan, Italy. These sleep problems can contribute to pain, daytime fatigue, and fibro fog.

"A large percentage of FM patients report sleep disturbance, including difficulties in falling or staying asleep, early morning awakenings and non-restorative sleep," says Maurizio Rizzi, MD, and colleagues. The researchers conclude managing sleep disorders could actually reduce fibromyalgia symptoms, including fibro fog.

Other theories blame pain levels for fibromyalgia fog. When people experience fibromyalgia pain, the belief is that some parts of their brains do not receive enough oxygen, causing confusion and disorientation. Pain also stimulates areas of the brain involved in cognitive tasks. Quite simply, it is just hard to concentrate when you are in pain.

Overexertion, extreme fatigue, stress and side effects of fibromyalgia medications are also blamed for fibro fog.  My fibro fog is worst when I am exhausted, and as a single parent, I have been known to push myself to the point of cloudiness. Overstimulation, such as background noise and fluorescent lights, is also a fibro fog trigger, along with not getting a good night's sleep.  All of these things can make it harder to focus on the things I need to do.

Coping With Fibro Fog

While there are no specific treatments for fibro fog, you can alleviate fibro fog by following your doctor's treatment plan. Your doctor may also prescribe medications to manage specific symptoms.  For example, he or she may prescribe a sleep aid to help improve sleep, and if sleep quality is better, you’ll feel more alert and focused. 

Here are some other strategies for coping with fibro fog.

Get Quality Sleep. Because lack of sleep is a big reason for fibro fog, improving sleep habits may provide relief. For example, try going to bed at the same time every night and get up in the morning at the same time every day. 

Stay Active. Even though you struggle with pain, you should still keep moving. Low impact activities, such as walking, are easy to do. Try to stay active throughout the day by sitting less, taking stairs more often, and parking further away.

Maintain a healthy diet. Cognitive functions do improve when you eat real food. This includes fruits and vegetables, whole grains, lean meat, and low-fat dairy.

Avoid caffeine. Most people think caffeine helps with alertness and awareness. But, caffeine makes symptoms worse for fibromyalgia patients, and contributes to sleep issues. Moreover, it is a stimulant that gives you energy and forces you to crash once it wears off.

Stop stressing. Stress triggers and worsens fibro fog.  Do your best to avoid stressful situations. Try relaxation breathing when you are feeling overwhelmed.

Keep a calendar. A calendar is a lifesaver when you can't think straight.  Keep track of appointments and events on a paper calendar or computer program.  Set timers and alarms as appointment reminders.

Have routines. Having routines for simple tasks helps, too.  For example, you may want to keep your purse, coat, and keys in the same place, so you are less likely to be searching when you need them and fibro fog is making it difficult to think straight.

Don’t Take Life So Seriously

Like most other fibromyalgia symptoms, there is no magic, one-size-fits-all solution to combat fibro fog. It usually requires a combination of strategies and habits to reduce cognitive issues. You will need to try and practice coping strategies until you find what works for you.

Remember to be kind to yourself when you struggle with mental unclarity.  Slow down if you are feeling frustrated and regain focus.  Lastly and most importantly, stop pushing yourself to adjust and just take care of yourself.

I have learned to not take life so seriously and to have a tongue-in-cheek attitude about my cognitive struggles. There are plenty of foggy -- yet funny – moments, like when I put my keys in the fridge and the milk in the cabinet.  I can either get depressed or laugh at these silly mishaps.  Taking yourself lightly will give you an emotional boost and put a smile on your face, and there are plenty of good health benefits when you are happier.

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.

Finding the Right Doctor to Treat Fibromyalgia

By Lana Barhum, Columnist

Numerous studies show patients have better health outcomes when they have a doctor they trust and who listens to their health concerns.  Further, patients who trust their doctor are more likely listen to their advice and be compliant with treatment.

According to a 2014 breakdown of 13 clinical studies, a good doctor-patient relationship can have significant effects on positive health outcomes. The research, published in the PLOS One online journal, looked at studies where doctors were randomly assigned to either practice their normal care methods or take additional training to provide more empathy and patient focused care. The health benefits of patient focused care showed measurable results towards better patient outcomes. 

"The patient-clinician relationship has a small, but statistically significant effect on healthcare outcomes,” the researchers found.  

If you think you might have fibromyalgia, you will need to work closely with your doctor to diagnose and treat it.  You want a doctor who is knowledgeable about fibromyalgia and treatment options, including medicinal and non-medicinal therapies. 

In addition, your doctor should be someone you can confide in when you have concerns about treatments, symptoms, pain and lifestyle.

What Doctors Treat Fibromyalgia?

The American College of Rheumatology’s (ACR) updated fibromyalgia diagnostic criteria has made it easier for medical professionals to learn about the diagnosis and management of fibromyalgia. Still, not every doctor understands fibromyalgia, so it is important to find one who is up-to-date on the latest treatment and research. 

The following doctors can treat fibromyalgia:

Rheumatologists. Rheumatologists treat arthritis and other diseases of the bones, joints and muscles. This includes fibromyalgia, osteoarthritis and autoimmune arthritis, such as rheumatoid arthritis and lupus. 

Neurologists. A neurologist diagnoses and treats patients with nervous system disorders. Researchers have long speculated fibromyalgia is the result of a pain processing disorder, which causes amplified pain that shoots through the bodies of sufferers. 

"Because pain pathways throughout the body are amplified in fibromyalgia patients, pain can occur anywhere, so chronic headaches, visceral pain and sensory hyper-responsiveness are common in people with this painful condition," said Daniel Clauw, MD, a professor of anesthesiology at the University of Michigan.

Neurologists might be in the best position to treat fibromyalgia, as they are able to narrow down pain and symptoms and treat them more specifically. 

Pain Specialists.  Pain specialists are experts in diagnosis and treatment of chronic pain.  They offer a variety of treatments that include both medical and psychological therapies.  They generally work in private pain management clinics or as part of pain treatment centers in hospitals and university medical centers.

Family Practice Doctors and Internists. Traditionally, fibromyalgia fell under the scope of rheumatologists. These days, however, family practice doctors and general internists are seeing more patients with fibromyalgia.

Finding the Right Doctor

Here are a few tips to find the right doctor to treat your fibromyalgia:

Support Groups. Local fibromyalgia or arthritis support groups are great places for referrals to someone who treats fibromyalgia. 

Don’t limit yourself to rheumatologists.  While the ACR's rheumatologist search is a great resource, there is no reason to limit yourself.  Rheumatologists generally have demanding patient loads and it could take months to get in for an appointment. 

Check with pain clinics. Pain clinics may treat fibromyalgia patients separately from pain management.  They also provide referrals to fibromyalgia specialists.

Call your insurance company. Your insurance company may have a list of health care providers   covered by your policy that will also include doctors who treat fibromyalgia.

Your family practice doctor. Your family doctor likely knows someone who specializes in fibromyalgia treatment. He or she may also be qualified to treat you.

Ask around. Someone you trust, such as a loved one or co-worker, may know a fibromyalgia doctor.  You may also find someone else who is living with fibromyalgia.

Hospital websites. Hospital websites offer directories of medical providers on their websites.  They share doctor resumes and expertise, which may include experience in treating fibromyalgia.

My Experience Finding the Right Doctor

Because fibromyalgia is still controversial in the medical community, finding an informed doctor can help you to get the best control of your situation, the medical help you need, and relief for pain and symptoms. 

My current treating doctor -- a rheumatologist -- understands that our doctor-patient relationship is a partnership.  She respects my time, never makes me feel rushed and answers my questions.  Moreover, she is knowledgeable about my diagnosis, treatment plan and lifestyle, and doesn’t rely on my chart for answers.   But I didn’t always have a doctor I trusted, who listened and addressed my concerns.

In 2009, I didn’t know what a successful doctor-patient relationship looked like. I had a doctor who dismissed my worries, felt fibromyalgia could only be treated with diet, exercise, and anxiety medications, and did not want to hear how fibromyalgia affected my life as a young mother in my early 30s.  After that first miserable year with fibromyalgia, I came to the conclusion that if I wanted a healthy and thriving life, I would first have to find the right person to treat me.

Experience has taught me the relationship I have with my fibromyalgia doctor is the main determinant of how successful my treatments will be.   That first fibromyalgia doctor told me I'd be disabled within four years, but it has been over eight years and I am not disabled and still able to work and care for my family.  I know this couldn’t be possible if I continued to see that doctor. 

Finding a doctor who understands fibromyalgia may take time, but don’t get discouraged. Look for a doctor who is knowledgeable about fibromyalgia, believes in team work, is empathetic and who listens. 

And if you find yourself with one that isn't a good fit, as I did, it is okay to look for someone else. But keep the current one until you find someone new.

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.

Diagnosing Fibromyalgia Can Be Long, Difficult Process

By Lana Barhum

Because of newer, comprehensive methods for treating fibromyalgia, including lifestyle approaches and medication, the prognosis for fibromyalgia patients is slowly improving.  But first a doctor needs to make an accurate diagnosis, which isn’t easy. 

On average, it takes 2 to 3 years to get a diagnosis, and research shows that people with fibromyalgia typically see many doctors before getting one.  Even with a doctor who is knowledgeable about fibromyalgia, it still takes time.

While much research has been devoted to fibromyalgia, a syndrome defined by debilitating widespread muscle pain, cognitive impairment, lack of restorative sleep and extreme fatigue, it is still contested by some in the medical community.  Moreover, there remains considerable disagreement about fibromyalgia's cause, whether it is psychological or physical, and how to treat it. 

That lack of conformity is unfair to the millions living with the real pain and sickness fibromyalgia brings in its wake. Fibromyalgia takes a toll on mental and physical health, relationships and quality of life.

“People with fibromyalgia suffer from severe, daily pain that is widespread throughout the body,” says Dr. Leslie J. Crofford, an NIH-supported researcher at Vanderbilt University. “Their pain is typically accompanied by debilitating fatigue, sleep that does not refresh them, and problems with thinking and memory.”

Why Does a Diagnosis Take So Long?

The one thing the medical community does agree on, is that fibromyalgia is difficult to diagnose. But why does it take so long?  Here are some possible explanations. 

Fibromyalgia is not considered a disease.  It is a syndrome, which means a cluster of signs and symptoms that occur together, and create an abnormality or condition. 

Fibromyalgia symptoms often don’t make much sense.  Sleep issues, extreme fatigue, anxiety, headaches, widespread pain and so much more could be attributed to any number of health conditions or bad habits, such as insomnia, stress, not drinking enough water, or smoking.  Additionally, symptoms vary from person-to-person and their severity is constantly changing. 

There are also no universally accepted labs or diagnostic tests for fibromyalgia, so doctors must rely on symptoms to make a diagnosis. Physicians also have to make sure the symptoms are not caused by another health condition.

Criteria for Diagnosing Fibromyalgia

In 1990, the American College of Rheumatology’s (ACR) diagnostic criteria involved physical examination of specific tender points on the bodies of fibromyalgia patients. If patients had at least 11 or 18 tender points, they were given a diagnosis of fibromyalgia.  It was the only method available at the time for diagnosing fibromyalgia, but studies would later point out the limitations of this method.   

The 2010 ACR diagnostic criteria, updated in 2011, utilizes a widespread pain index criteria and a symptom severity score.  In 2016, researchers updated the criteria yet again, reporting their revisions at the ACR's annual meeting in September. 

They determined that a doctor who is knowledgeable about fibromyalgia can make a diagnosis based on symptoms that include widespread pain lasting more than 3 months, as well as other symptoms, such as debilitating fatigue.  Moreover, the doctor must consider the number of areas on the body where the patient has had pain over the past few days and the severity. Lastly, he or she must rule out other potential causes of the patient's pain and symptoms.

It wasn’t until late 2015 that fibromyalgia was finally recognized as an official diagnosis and given a new ICD-10 code (10th revision to International Statistical Classification of Diseases and Related Health Problems, a medical classification list by the World Health Organization). This came as a result of many medical advances over the last decade in understanding and acknowledging fibromyalgia.  

Regardless of how far we have come in research and awareness, until there are conventional methods for testing fibromyalgia, it will continue to remain a diagnosis of exclusion.   Doctors will continue to rely on a description of symptoms and pain from patients, which can be difficult to articulate for most people. 

Patients' Responsibility

In late 2008, I was finally diagnosed with fibromyalgia based on the 1990 criteria.  I know firsthand that living with a cluster of deliberating symptoms and unexplained pain can be frustrating. 

I don’t recall the exact date I was diagnosed, the onset of my symptoms, or what triggered my illness.  What I do recall is that for ten very long years, I visited countless doctors as my pain worsened and the list of symptoms continued to grow.  I would inform doctors I was hurting and extremely exhausted. Some mornings, I couldn’t even get out of bed.  Some treated my symptoms as psychosomatic and others tried treating my physical symptoms. And of course, there were the ones who viewed me as drug-seeking.

Despite my difficult and frustrating experiences, I took responsibility for my health and finding answers.  All I ever wanted during that ten year period was to be believed, but it took a lot of physical and emotional pain to get that.

I know anyone struggling to find answers feels the pain and sentiment in my saying that a diagnosis finally gave me my life back.  It truly did, and even though finding successful treatments has proved challenging, having an actual diagnosis has made life a whole lot easier.

Medicine has come a long ways in diagnosing fibromyalgia, but doctors still need to rely on descriptions of symptoms and pain from patients, which is challenging.   As a patient, it's up to you to keep track of all your symptoms.  Write them down. Note what causes them or worsens them or decreases their intensity.  Most importantly, be aware of how symptoms and pain affect your life.  This will assist your doctor in determining what is wrong and how best to treat it.  

Remember to trust your instincts, stand up for yourself, keep looking for answers and don’t be deterred. 

Lana Barhum lives and works in northeast Ohio. She is a freelance medical writer, patient advocate, legal assistant and mother.

Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.