The Importance of Understanding Research

By Janice Reynolds, Guest Columnist

Almost daily we are told that a study shows this or research shows that, a physician makes claims based on research, or the news media blaring “New Study Shows.” 

Even worse, more and more frequently we are seeing providers, government and the media basing their opinions or actions on poor evidence -- or many times the total lack of it.  I have a tee shirt which says: “Show me the evidence and critical thinking.”

It is time for people in pain as well as their advocates to understand research studies and hold accountable those that are cited.

Evaluating research is a little complicated and time consuming, but it is something every medical person needs to do.  More importantly, the media needs to justify their reliance on research and identify that what they are saying is true, rather than something totally lacking in validation and objectivity (which unfortunately is most often the case). 

After all, the media claim to do careful research before doing a story. Politicians should also have accountability for objective truth.

As people living in pain, our arguments and comments are more effective if we show that we know what we're talking about.  It may not change someone's mind if they are opiophobic or dislike and distrust people in pain, but it’s important to try.

I’ve made repeated requests to the Portland Press Herald to give me the citations for their claim that “studies have shown conclusively that opioids not only don’t work for chronic pain but make it worse.” I haven’t changed their minds, but it is ammunition in the battle for actual truth.

These are some of the terms the public and people in pain need to understand:

Correlation and causation: Probably the most important.  Just because something happens at the same time, does not mean one thing “causes” the other.    My husband teaches statistics at a university and the example he uses is when the number of new boat licenses increases the number of manatees being killed. This does not mean boat licenses kill manatees.  This correlation means causation thing is rampant in media stories about pain.

Anecdotes and surveys:  An anecdote is an account not necessarily true or reliable, because it is based on personal experience rather than facts or research.  For every anecdote, there are often many more which tell a totally different story. An example would be: "My son died of an opioid overdose. We have to stop these drugs from killing people." Any death is tragic, but opioids do not in themselves kill people. 

Surveys also rely on someone’s self-reporting.  The one used extensively by the media and politicians is that 3 in every 4 heroin addicts got their start taking prescription opioids. That particular survey relied on addicts to tell the truth, did not not include addicts outside of treatment, and most importunately did not include millions who have taken opioids for pain and never even touched heroin.  Surveys and anecdotes are worthless as evidence.   

Case studies:  These are things that happened to a person, group or situation at a single time and/or place; i.e. a case history.  The CDC makes use of case studies to “prove” in their seminars the correctness of their opioid guidelines.  Case studies are of interest, but are not valid evidence for the same reasons anecdotes are not.

Data mining: This is the process of collecting, searching through, and analyzing a database to discover patterns or relationships. In our case, it usually means they have gone through death certificates, insurance records and the like.  Once again, this is not a source of evidence as there is no way to verify the validity of the data, as well as other confounding factors.  Data mining is the CDC’s favorite method and it has been shown to be highly inaccurate. It does not have a place in medicine, except to develop insights and lead to actual research.

Statistics: These by themselves do not mean much. Researchers need to use the appropriate statistical analyses before publishing them.  Medical providers, media and politicians need to acknowledge what analysis method was used and what the outcomes were.

Qualitative vs quantitative: Qualitative research gathers information that is not in numerical form. For example, diary accounts, questionnaires, case studies and anecdotal accounts are used to gain an understanding of underlying reasons, opinions and motivations. Qualitative data is typically descriptive data and as such is harder to analyze than quantitative data. It can never be “proof.”

Quantitative research looks at numbers, it is the “hard” science. Quantitative research is used to quantify the problem by way of generating numerical data that can be transformed into useable statistics that can be evaluated.

Objectivity: Objectivity means being aware and honest about how one's beliefs, values and biases affect the research process. This also applies to the reviewing, reporting, and selection of research.  The media especially lacks objectivity in their reporting of all issues related to people in pain and the “opioid addiction epidemic”.

Method:  How the study was done; meta-analysis, random controlled trials, non-random controlled trials, survey, cohort or case controlled study, or even expert opinion. The latter is only acceptable when no other research exists on the subject.

Sampling: The number of participants and who they were. A small number has a lower strength of evidence.  My favorite example of a “who” was a study done which claimed to show analgesics caused people to be homicidal.  Their sampling took place in a prison where all the participants were murderers!  Doesn’t take a rocket scientist to figure out this was biased.

Strength of evidence: This is probably the most important term when it comes to research.  There are many different tables used (easy to Google) that show a hierarchy of what is strong evidence, what is weak and what is non-existent.  Even the CDC recognized the evidence for their opioid guidelines was weak to non-existent. Most studies on the opioid epidemic or people in pain are inherently weak because the evidence is so poor.  

Proof:  Research seldom ever provides “proof.”  If multiple studies come up with the same results, then some might call it proof; however it is safer to say “likely.”  When talking about pain, medications, interventions or even addiction, the word “proof” should be off the docket.

Critical thinking: Critical thinking is the identification and evaluation of evidence to guide decision making. Another definition is making reasoned judgments that are logical and well thought out, a way of thinking in which you don't simply accept all arguments and conclusions you are exposed to, but rather question such arguments and conclusions. 

Those who are prejudiced and biased against people in pain or opiophobic rarely use any critical thinking skills at all.  In fact, after a comment I had made on a newspaper article, someone assassinated my character by saying my head was filled with mashed potatoes and I lacked any critical thinking skills whatsoever.  There was more and it was pretty funny.  This unfortunately is characteristic of the media, politicians and general public. No matter what we say or how truthful our comments, they will not hear. 

Evidence based: This means looking at best available clinical evidence from methodical research.  The word term is thrown around lightly and unless you have the actual “evidence” to back it up, it is meaningless. 

Several years ago, I was part of the original Pain PEP (Putting Evidence into Practice) team for the Oncology Nursing Society. We studied pharmaceutical interventions for nociceptor and neuropathic pain in the adult cancer patients. It took us two years to evaluate recent guidelines and research studies, and to write our guidelines based on the strength of the evidence. If you say something is “evidence based,” be prepared to show it.

One last comment on the issue of research and pain management: There are integral difficulties in pain research as people vary in their reaction to pain, the cause of their pain, and how they respond to treatment. Any research that uses the term “chronic pain” is already working with a false premise because there are so many different types of pain that are persistent.  Any research that looks at a “class” of medication such as opioids or antidepressants is also employing a false basis as well.

Pain management is an art and a science, and any attempts to standardize it will only harm people in pain.  

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

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

How Far Will You Go for Pain Relief?

By Carol Levy, Columnist

In 1991, my surgeon ran out of options on how to help me. I’d had most of the procedures available for trigeminal neuralgia. Even the ones that helped were always short lived.

In a last ditch effort, he tried a dorsal column stimulator implant. It was successful in stopping about 85 percent of my pain. I was still disabled by severe eye pain, but I no longer had the spontaneous pain that could be caused by a simple touch.

Unfortunately, I lost the implant to an infection. A second implant did not help at all and also became infected.

The doctor told me there was nothing else he could do. There was so much scar tissue in my neck, where both implants had been placed, that surgically implanting another stimulator was impossible.

I was inconsolable. This was it.

No medications were helping and I dreaded a new neurosurgical attempt. But how could I refuse, if it might relieve the pain? Pain is different than most other symptoms. We are biologically ordained to do almost anything we can to be free of it.

The doctor understood this. To my astonishment, he had not given up. One day he came to me and said, “I have an idea.” It would be another implant, in the sensory cortex area of my brain,

The surgery would be 100% experimental. Only 12 other people in the world had it. Most of those were for pain in a different area of the brain than trigeminal neuralgia.

But I was in pain. Daunting, intolerable and disabling pain. Of course I said, “Yes.”

Recovering from the surgery was horrendous. I was anesthetized, but repeatedly awakened so they could ask, “Where is the pain? Where is it now?”

Over and over again; awake, torture, sleep, awake, torture, sleep. Finally, there was blessed sleep only.

I was not convinced the implant helped, until it failed 20 years later. Then I realized it had slightly reduced the level of my phantom pain. Not much, but enough that once it stopped working, the pain increased.  It did nothing for the eye pain, but any relief is to be celebrated.

I thought the doctor who took over my surgeon’s practice could fix it, but that was not feasible. The implant was so old the replacement parts were no longer available.

In two weeks he will take the implant out so that I can get an MRI, to see if there is anything else he can do to try and help me (I cannot have an MRI because of the implant).

The funny thing is I’ve asked him, more than once: “Can't you use the newer version and just put the implant back?”  

The answer is always no.

It didn’t occur to me that I was asking him to put me through the torture of the procedure all over again.  Worse still, once I realized repeating the surgery meant repeating the torture, I still found myself entertaining the thought: Maybe I could tolerate it if he would do it.

I cannot imagine putting myself through that horror again - when I think about it sensibly. But, when I think about it from a pain standpoint and how I may get some relief, it seems like a sensible idea.

Thankfully, he's refused so the debate within myself is purely hypothetical. I wonder though, what exactly will we do or entertain if it offers the possibility of ending the pain? How far are we willing we go?

That, in its own way, may be as petrifying as the pain itself.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

Study Finds ‘Nocebo Effect’ of Statins Cause Pain

By Pat Anson, Editor

An industry funded study is adding more fuel to a sometimes heated debate over statins – and whether the cholesterol-lowering drugs cause muscle pain and weakness.

Research involving nearly 10,000 patients published in The Lancet medical journal suggests that people taking Lipitor – the brand name for the statin atorvastatin -- are more likely to report muscle aches and other side effects, but only if they knew there were taking the drug.

This is what is called the “nocebo effect” – the opposite of the placebo effect – where people complain of side effects because they expect to have them.

"Just as the placebo effect can be very strong, so too can the nocebo effect. This is not a case of people making up symptoms, or that the symptoms are 'all in their heads'. Patients can experience very real pain as a result of the nocebo effect and the expectation that drugs will cause harm,” said lead author Peter Sever of the National Heart and Lung Institute at Imperial College London.

“What our study shows is that it's precisely the expectation of harm that is likely causing the increase in muscle pain and weakness, rather than the drugs themselves causing them."

Sever said complaints about the side effects overstate how common the problems are and discourage people from taking statins, resulting in "thousands of fatal and disabling heart attacks and strokes, which would otherwise have been avoided."

“These results will help assure both physicians and patients that most AEs (adverse effects) associated with statins are not causally related to use of the drug and should help counter the adverse effect on public health of exaggerated claims about statin-related side-effects,” he said.

The study was funded by Servier Research Group, Leo Laboratories and Pfizer – the maker of Lipitor. Five of the eight co-authors reported potential conflicts of interest, including payments from Pfizer and other drug makers that manufacture statins.  

Only about 2 percent of the patients taking Lipitor in The Lancet study reported having muscle pain, a finding that is substantially at odds with previous research.

For example, in a study at the Cleveland Clinic last year, 42 percent of patients taking Lipitor reported muscle pain and weakness. Other studies have found muscle pain in 5% to 29% of statin users.

The Food and Drug Administration considered the problem serious enough that in 2014 it required warning labels on statins, cautioning that some statins can cause a muscle injury called myopathy, which is characterized by muscle pain or weakness. In rare instances, the FDA says statins can also cause liver injury, diabetes and memory loss.

Another study this week, published in JAMA Internal Medicine, linked statin use to back pain conditions such as spondylosis and intervertebral disc disorders. The study involved over 13,000 military veterans and their families.

“To our knowledge, this study is the first to report greater odds of back disorders among statin users compared with the odds of nonusers in a population with equal access to and the same cost of health care,” said Una Makris, MD,  of the VA North Texas Health Care System in Dallas. “Our results provide additional motivation to further investigate the overall influence of statin therapy on musculoskeletal health, specifically if prescribed for primary prevention in physically active individuals.”

Pain Poem: A Misery Too Great to Bear

"A Misery Too Great to Bear"

By Angelika Byczkowski

People in pain are dying,
a reluctant calculation,  
the only option left to escape
a misery too great to bear.

While we struggle with our pain,  
our government has decided   
to snatch relief from opioids  
away from us for our own good.  

They say one pill begins the end,  
addiction guaranteed.
We say we need a powerful shield
only opioids can provide.  

By policy now unarmed, defenseless,
we are stalked by pain through every moment.  
It hunts us down relentlessly,  
sinks fangs in deep and feasts.

It rips the flesh and breaks the bones,   
cracks the skull and snaps the spine,  
with license to do just as it pleases,  
impunity guaranteed by decree.  

We are sent out naked now  
to battle this rampaging pain  
with methods long disproven, yet  
"believe and it will be" they say.

Denied our armor, medication  
callously denied by guidelines,   
we teeter at the ragged gash  
where soul was ripped from body.  

How much pain and for how long  
can we be asked to bear,  
while experts coin their catchy phrases,  
call our pain "catastrophizing".

A catastrophe indeed is pain:
It traps us in the wreckage,  
wandering the sad remains    
of tortured flesh that cannot heal.

What we know is pain, we feel  
only pain, exploding pain,  
pain so bad it breaks our will
to live like this forever.  

Pain dominates, annihilates,
ruthless in its roaring rage, while  
helpless at the feet of the beast,
we lie sacrificed for overdoses not ours.

People in pain are dying,
a reluctant calculation,  
the only option left to escape
a misery too great to bear.

 

20130620_030043000_iOS-001.jpg

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome and fibromyalgia. Until she was disabled by progressive pain and fatigue, Angelika was a high tech IT maven at Apple and Yahoo. She lives in California’s Santa Cruz Mountains with her husband and various four-legged kids.

When pain isn't keeping her flat on her back, she spends her limited energy researching and blogging about chronic pain, EDS, and fibromyalgia at EDS Info.

Pain News Network invites other readers to share their stories (and poems). Send them to:  editor@PainNewsNetwork.org

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

Pain Patients Prefer Marijuana over Opioids

By Pat Anson, Editor

A small study by Canadian researchers has found that nearly two-thirds of patients who use marijuana medically prefer cannabis over prescription drugs to treat their chronic pain, anxiety and depression.

An online survey by researchers at the University of British Columbia and University of Victoria asked 271 patients about their marijuana use. About half reported having chronic pain, while the remainder suffered from mental health issues, gastrointestinal problems, insomnia or multiple sclerosis.  

Overall, 95 percent of patients said cannabis was very effective at treating their symptoms and 63 percent reported using cannabis as a substitute for opioids, benzodiazepines, anti-depressants and other prescription drugs.

The study, published in International Journal of Drug Policy, was funded by Tilray, a medical marijuana production and research company.

“The finding that patients using cannabis to treat pain-related conditions have a higher rate of substitution for opioids, and that patients self-reporting mental health issues have a higher rate of substitution for benzodiazepines and antidepressants has significant public health implications,” wrote co-author Zach Walsh, PhD, an assistant professor of psychology at the University of British Columbia.

“In light of the growing rate of morbidity and mortality associated with these prescription medications, cannabis could play a significant role in reducing the health burden of problematic prescription drug use.”

Vaporizers were the most common method for using cannabis, followed by smoking, edibles, water pipes, and topical lotions. Most patients reported using 2 grams or less of marijuana. Many said cannabis was safer and had fewer adverse side effects than their medications.

A recent study in Canada found that a significant increase in the use of marijuana coincided with a decline in the use of opioid pain medication and benzodiazepines such as Xanax and Valium.

“The finding that medical cannabis is used primarily to treat chronic pain is consistent with past research. However, the extensive self-reported use to treat mental health conditions and associated symptoms represents a novel and interesting trend, and suggests that the conceptualization of cannabis as deleterious to mental health may not generalize across conditions or populations,” Walsh said.

Medical marijuana has been legal in Canada since 2001, but only to treat certain conditions. Cannabis is currently prescribed to over 65,000 patients.

A small study conducted at the University of Michigan last year also found a significant decline in the use of opioids by pain patients using medical marijuana.  Nearly two-thirds (64%) reported a reduction in their use of pain medications and almost half (45%) said cannabis improved their quality of life.

Previous research also found that opioid overdoses declined by nearly 25 percent in states where medical marijuana was legalized.

Last week, a spokesman for the Trump administration suggested there could be a crackdown in the U.S. on the use of marijuana recreationally.

"There's two distinct issues here, medical marijuana and recreational marijuana," said press secretary Sean Spicer. "I think that when you see something like the opioid addiction crisis blossoming in so many states around this country, the last thing that we should be doing is encouraging people."

Although 28 states have legalized medical marijuana and a handful of states also allow its recreational use, marijuana is still illegal under federal law.  Spicer suggested there could be “greater enforcement” of federal law under Attorney General Jeff Sessions, a longtime opponent of marijuana use.

Active Seniors Have Lower Risk of Chronic Pain

By Pat Anson, Editor

Older adults who are physically active are better able to block pain signals and may have a lower risk of developing chronic pain, according to a small study published in the journal Pain.

Researchers at Indiana University-Purdue University Indianapolis performed a series of experiments on 51 healthy adults, aged 60 to 77, who wore monitoring devices for one week to measure their physical activity. Participants were given heat and pressure tests to measure their “pain modulation” – how the central nervous system interprets and perceives pain.

Both tests found that pain modulation was significantly related to physical activity. Older adults with more frequent moderate-to-vigorous physical activity had lower pain scores, while those who were sedentary were less able to block pain signals. Even light physical activity appeared to lower pain perception.

"This study provides the first objective evidence suggesting that physical activity behavior is related to the functioning of the endogenous pain modulatory systems in older adults," wrote lead author Kelly Naugle, PhD, of the Center for Physical Activity in Wellness and Prevention, Indiana University–Purdue University Indianapolis.

"Our data suggest that low levels of sedentary behavior and greater light physical activity may be critical in maintaining effective endogenous pain inhibitory function in older adults."

Previous studies have shown that pain modulation is poor in patients with chronic pain conditions such as arthritis, back pain and fibromyalgia.

Aging is associated with chronic low-grade inflammation and oxidative stress, which could make the peripheral and central nervous systems more sensitive to pain. Older adults are also more likely to be sedentary and less physically active, which would make them more vulnerable to chronic pain.

Recent studies have documented the benefits of exercise for older adults. Chair yoga reduced pain and improved the quality of life in older adults with osteoarthritis. Another study found that just 45 minutes of moderate exercise a week improved function and reduced pain levels.  

A Pained Life: The Hand of a Stranger

By Carol Levy, Columnist

I went to the Women’s March on Philadelphia Saturday. I am very politically minded.  I love doing these things. And each and every time, I have the same problem

I forget about the pain. I forget about the specifics, logistics and potential for pain.

I have trigeminal neuralgia, which causes severe pain on the left side of my face. It can be set off just by touch. I am also legally blind on that side.

It puts me in a precarious position. It is essential that I not let anyone get close enough to accidentally brush against my face. For me, the innocuous sign of an outstretched hand or arm is dangerous. And since I can't see on that side, I have no idea how close someone might be to touching and triggering the pain.

I did not expect the size of the crowd, which was estimated at 50,000 people. Small rallies are bad enough, but this one was so enormous that as soon as I left the train station and went towards the designated rally area, I was engulfed in a sea of people.

And I was petrified. Thousands of people were bearing in on me.

I tried to make my way through the mass of people. Everyone was very nice. “Excuse me. Excuse me,” I said.  Some moved, but some could not with the press of so many bodies.

image courtesy of philadelphia mayor's office

image courtesy of philadelphia mayor's office

One woman smiled as I explained to her I was trying to reach the borders of the rally, so I would not be in the midst of so many people. For this kind of event it was an odd thing to say. She looked at me quizzically. I figured I had better explain.

I have learned to be hesitant about explaining my condition. My family has been nasty about the pain. Strangers, even friends and acquaintances, can and have been unpleasant about it. As way too many of us know firsthand.

This was a “'talk with the stranger in the next seat” moment. I would never see her again, so there was no risk in explaining and no worry if she didn't understand or could not care less. Plus, my need outweighed my concerns about how she might react.

Her reaction was unexpected. She put her arm around me and held out her hand. Taking mine in hers, she led us through a bastion of folks. When we got to an area less crowded, she let go and I continued on.

What a wonderful experience and for so many reasons, not the least of which was I said what I needed and I was heard.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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.

A Pain Poem: Do You Ever Wonder Why?

"Why"

By Angelika Byczkowski

People sometimes ask:

Do I ever wonder why?
 

When I was still invincible,

my shining star still on the rise,

my future still unscathed and bright,

anything seemed possible.

 

Anything but this.

A cosmic roll of the genetic dice

comes into play and shows its face:

I'll be living in pain the rest of my days. 

 

Do I ever wonder why?


They ask this, not I.

For me, such questions don't apply.

 

I've accepted and adapted,

adjusted to a life with pain,

asking nothing of the future,

giving up my yesterdays.

I've been changed and the world is changed,

my altered view sees everything new.
 

Perhaps there'd been a danger

of complacency, a lazy habit

of ease unearned, a passiveness,

a willingness to go along.
 

Perhaps life was becoming stale,

perilously smooth and tame,

hazardously even-keeled,

and dangerously boring.
 

Perhaps my life would have remained

inadequate, unchallenged,

never having fully grown

to its frightening potential.
 

Why did this fate befall me?

 

Well, it did and that is that.

And when I stopped resisting,

allowed the change,

it changed me.


Why not?

 

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome and fibromyalgia. Until she was disabled by progressive pain and fatigue, Angelika was a high tech IT maven at Apple and Yahoo. She lives in California’s Santa Cruz Mountains with her husband and various four-legged kids.

When pain isn't keeping her flat on her back, she spends her limited energy researching and blogging about chronic pain, EDS, and fibromyalgia at EDS Info.

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

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.

A Pained Life: Accepting Help is Not a Weakness

By Carol Levy, Columnist

A few days ago I was walking with my friend, Jean. She had her cane in one hand and a wheeled bag in the other. As we approached the stairs going down to the walkway I asked, "Can I take the bag?"

"Oh, no. I'm fine," Jean said.

No, she wasn't. It was an additional burden to manage the bag, as well as the cane. How silly of her, I thought. It would be so much simpler if she'd let me help her.

It did not immediately occur to me that I had done the exact same thing only a few days earlier, when someone offered to help me.

I have neck and back problems. As a result, I should not be lifting anything heavy, which definitely includes the two 42-pound bags of cat litter I had bought.

I put on my neck brace. Grunting and groaning under my breath in case, heaven forbid, someone should come by and acknowledge my struggle, I pulled the bags out of the car.

Then I took the wheeled little platform I have for moving something heavy or unwieldy, put one bag on it, got on my knees and pushed it to the door. I went back to the car, got out the second bag and repeated my performance. Next I lifted them to get them up and over the door jam. Breathing heavily and already in pain, I readied myself to start rolling them end-over-end, like a Slinky, but going up stairs instead of down, to my third floor apartment.

I rarely see my neighbors but suddenly, out of nowhere, a man appeared. Without a word he picked up one of the bags and hefted it up onto his shoulder.

"Oh no," I said. "That's okay. I'm fine. I can get it upstairs. Thanks anyway."

Luck and kindness were with me, since logic and intelligence were not. He just looked at me and continued to carry it up the stairs to my front door. He then got the other bag and carried that up to my door.

After lifting or carrying something heavy, which sometimes can be merely five pounds or so, I am exhausted. Often I end up having to lie down, sometimes for hours, to get over it. But accept help? Say "Yes, thank you." when someone offers? Oh no. That is a fate worse than death.

What is it about accepting help? Is it an admission of weakness, of giving up control? Is saying, “Yes, I need help” a ceding of independence?

For me, and for my friend Jean, once we talked about it, we realized, at least for us, that is exactly what it is. We prefer to struggle, hurt and harm ourselves rather than accept help. Rather than swallow our false pride.

It is said pride goes before the fall.

We both were silly, preferring to take the chance of a literal fall. We blinded ourselves, unable to see the offering of a hand, and the acceptance of it as a gift -- a gift to the person who offers help when we acknowledge their kindness by saying, “Yes. Thank you.”

It can also be a gift to ourselves, if we see the “Yes. Thank you” not as a weakness or giving up control, but as a strength.

It takes courage to say, “Thank you. I can use your help.”

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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.

The Link Between Empathy and Pain

Pat Anson, Editor

The Merriam-Webster dictionary defines the word empathy as “understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another.”

Or as former President Bill Clinton famously said, “I feel your pain.”

But new research suggests empathy may be a lot more complicated than we think – at least when it comes to feeling the pain of others.

A team of European researchers has found evidence that empathy may be strongly influenced by neurotransmitters in the brain -- and is not just a form of emotional or social bonding.

Their findings suggest that empathy is dependent – not on feeling the pain of others --- but on experiencing pain yourself.

“Empathy is of major importance for everyday social interaction. Recent neuroscientific models suggest that pain empathy relies on the activation of brain areas that are also engaged during the first-hand experience of pain,” wrote psychologist Clauss Lamm of the University of Vienna, lead author of a study published in Proceedings of the National Academy of Sciences.

Lamm and his colleagues recruited 100 participants for an experimental trick with a placebo. They divided the volunteers into two groups and gave one group a pill they thought was a painkiller but was actually a placebo. The second group received no pill at all.

Both groups were given a small electric shock and asked to rate the degree of pain they felt -- and the degree of pain they saw in others who were also shocked.

The group that received the placebo not only reported less pain than the control group, but they also felt there was less pain experienced by others. That placebo-empathy effect was confirmed by MRI’s – which found there was less activity in brain areas of the placebo group that felt less pain and empathy for others.

Researchers tested the placebo-empathy effect in a second study in which they used the drug naltrexone to block opioid receptors in some of the volunteers. Those given naltrexone reported feeling more pain when shocked and felt that others felt more pain as well.

"This result strongly suggests an involvement of the opioid system in placebo-empathy, which is an important step to a more mechanistic understanding of empathy,” said Lamm.

"The present results show that empathy is strongly and directly grounded in our own experiences – even in their bodily and neural underpinnings. This might be one reason why feelings of others can affect us so immediately – as we literally feel these feelings as if we were to experience them ourselves, at least partially. On the other hand, these findings also explain why empathy can go wrong – as we judge the feelings of others based on our own perspective,” explains Lamm.

Lamm and his colleagues are now working on a follow-up study in which they are investigating the effects of opioids on empathy.