Obama Rejects Limits on Opioid Prescribing

By Pat Anson, Editor

President Barack Obama declined to endorse a sweeping proposal by some governors to put limits on the number of opioid painkillers that doctors can prescribe, saying such a policy would be unfair to rural Americans who don’t have easy access to pain medication or addiction treatment programs.

"If we go to the doctors right now and say 'Don't overprescribe' without providing some mechanisms for people in these communities to deal with the pain that they have or the issues that they have, then we're not going to solve the problem,” Obama said. "Because the pain is real. The mental illness is real. In some cases, addiction is already out there. In some cases these are underserved communities when it comes to the number of doctors and nurses and practitioners."

Over the weekend, a committee of the National Governors Association unanimously voted to develop treatment guidelines that could include limits on opioid prescribing. The proposed guidelines could be voted on by the governors at their next meeting in August.

Although no specific figure was put on the number of opioid doses that could be prescribed at one time, Vermont Gov. Peter Shumlin (D) said it should be no more than 10 pills for treatment of acute pain. Shumlin has complained in the past that opioids “are passed out like candy in America.”

Shumlin’s proposal was quickly endorsed by Republican Gov. Matt Bevin of Kentucky, a sign that the guidelines would have bipartisan support among the nation’s governors.

President Obama met with the governors Monday at the White House and endorsed their bipartisan approach to addressing the so-called opioid epidemic.

"This is an area where I can get agreement from Bernie Sanders and Mitch McConnell. That doesn't happen that often," Obama said.

The president of the American Medical Association said Obama was right to question the potential consequences of putting additional restrictions on doctors and patients.

"The complexity of the problem makes it difficult to create a successful one-size-fits-all approach," Dr. Steven Stack said in a statement to the Associated Press.

WHITE HOUSE PHOTO

The proposed guidelines could also include policies similar to those adopted by insurer Blue Cross Blue Shield of Massachusetts, which requires prior authorization for opioid prescriptions. Some patients are also required to use a single pharmacy for their opioid prescriptions. The policies have resulted in a 50 percent reduction in claims for long acting opioids such as OxyContin, and a 25 percent reduction in claims for short-acting opioids, according to Blue Cross Blue Shield.

According to the Centers for Disease Control and Prevention (CDC), heroin and opioid overdoses are killing as many as 78 American a day, although the agency admits its numbers may not be accurate.

Vermont’s Shumlin has emerged as one of the nation’s most vocal critics of opioid prescribing practices. His state and others in the Northeast have been have been hit hard by opioid and heroin overdoses.

“As long as opioid medications remain the default mainstay therapies for chronic pain, these drugs will constitute an ever-present risk for diversion and addiction. We need to address the prescription opioid crisis at its source: opioid medications, as we know them, must be made obsolete,” Shumlin wrote in a recent letter to U.S. senators who are drafting legislation to reform the Food and Drug Administration and the National Institutes of Health (NIH).     

Shumlin urged the senators to provide additional funding to NIH for clinical research into affordable and non-addictive alternatives to opioids.

Take Our Survey About Hospital Pain Treatment

By Pat Anson, Editor

Over the last few months, we’ve received hundreds of reader comments about the poor quality of their pain care in hospitals and emergency rooms. Many said they their pain was not treated or undertreated, while others said they were misdiagnosed or labelled as addicts if they asked for pain medication.

In an effort to keep the dialogue going and see just how common these problems are, Pain News Network and the International Pain Foundation (IPain) are conducting a survey of pain sufferers about their treatment in hospitals. The survey, which you can take by clicking here, should only take a few minutes to complete.

One reason we’re doing the survey is because a group of U.S. senators recently proposed that Medicare no longer require hospitals to ask patients about the quality of their pain care. The senators believe questioning patients about their pain leads to over-prescribing "because physicians may feel compelled to prescribe opioid pain relievers" to improve their hospital's ranking in patient satisfaction surveys.

“Why would we want to reduce pain care or stop asking about a person’s comfort and pain levels?” asked Barby Ingle, president of IPain, who knows from experience what it’s like to go untreated or undertreated in a hospital. Barby recently wrote a column about ways to make your hospital stay easier.

“The International Pain Foundation has been hearing increasing stories of undertreated pain care in ER and hospital settings over the past few years,” she said. “With such a large outcry from pain patients across the country saying ‘don’t go the hospital for pain, they don’t know how to treat pain,’ we know there is a problem. How can it be addressed? Surveying the pain community will help put a spotlight on this issue and show lawmakers, providers, insurance companies, and the pain community that we need more focus on our pain care needs, not less.”

A recent development that will affect future pain care in hospitals is the release of new guidelines for post-surgical pain management. The American Pain Society is encouraging physicians to use opioids alongside “multimodal therapies” such as acetaminophen, non-steroidal anti-inflammatory drugs (NSAIDs), Lyrica, Neurontin, and cognitive behavioral therapy to treat patients in post-operative pain.

“Cognitive behavioral therapy? Really? So you cut into my nerves and tissue and muscles for 6 hours, and the pain is all in my head?” is what Janet Lynn wrote about that idea.

“So when the NSAIDs shut down a person’s kidneys or cause massive stomach irritation and bleeding is it time to give a patient a narcotic pain med?” asked Sharon Storck

Even doctors aren’t immune from poor treatment in hospitals. Family practice physician Lisa Kehrberg, who has severe abdominal pain from visceral neuropathy, recently wrote about one of her experiences in a hospital (see “My Journey From Doctor to Chronic Pain Patient”)

“The first surprise was, after admission, they refused to treat my excruciating pain. I was doubled over, rocking, vomiting, and crying with the worst pain of my life. Worse than labor, appendicitis, or anything else I'd experienced,” wrote Dr. Kerhberg. “Doctor after doctor walked in and witnessed this and continued to refuse ordering opioids. After all the tests were complete and normal, the doctors were very rude to me and implied this was all a psychological problem.”

Has this ever happened to you? Are you satisfied with the quality of your pain care in hospitals? Take our survey and let us know, by clicking here.

Let’s Talk About Sex, Baby — and Chronic Pain

By Crystal Lindell, Columnist

The thing that nobody tells you about Cymbalta is that it takes a machine gun to your sex drive. Seriously. When I was on it, I was so repulsed by sex that I started to think maybe I was legitimately asexual. 

I mean, when the doctor hands you the prescription, it would be nice if they threw in something like, “BTW, you’re never going to want to make passionate love while you’re on this medicine.”

But of course, doctors never tell you stuff like that. And God forbid they give you a handout of some sort that maybe mentions it. No, they just leave you to Google “asexual” at 1 a.m. on a Tuesday night when you realize you’re identifying a little too much with Sheldon on the Big Bang Theory.

Don’t get me wrong, I have definitely been in such tragic levels of pain, that if someone had asked me if I wanted to give up sex so I could feel better, I wouldn’t have even thought twice about cutting off my own vagina and handing it over. 

But the thing is nobody asked me. They didn’t tell me I might have to make that sacrifice when they put me on Cymbalta. So I didn’t even know it was happening. And that’s when you get to some pretty dark places. 

Thankfully, I’ve since gone off Cymbalta, and my sex drive came back like a freight train. 

But that doesn’t mean there aren’t other issues related to sex and chronic pain.

Like when you have stabbing rib pain on your right side, so you can only tolerate sports bras, and then he goes to unhook the back, and it kills the mood because there is no hook in the back of a sports bra. And he’s mad that you’re dressed like someone planning to run a 5K, and then you’re mad that he’s mad that you’re dressed like someone planning to run a 5K, and so you just leave.

Or when he wants to cuddle, and you have to explain that, “Sorry, I can’t lay on my right side because when I do it feels like someone is jack hammering into my bones through the mattress. Hope that’s not a deal breaker!”

Not to mention the fact that when you’re in physical pain, the last thing you feel is sexy. And you most certainly don’t feel like having anyone touch you ever. 

First, there’s just the literal pain that can come from someone passionately throwing you against the wall, or even a pillow top mattress for that matter. When you feel like you always have a broken rib, even passionate love making can make you wince. 

Then, there’s the fact that the pain probably keeps you from showering as often as most Americans believe is normal, which means you probably smell, which means you’re probably not feeling very romantic. 

And of course, there’s the side effects from the medications, which make you gain weight, sleep all day, and zone out in front of YouTube videos about makeup while you simultaneously lose the ability to actually wear makeup. 

Not to mention the fact that it’s just really hard to make love to someone, while you yell things like, “OH GOD! OH GOD! OH GOD!  IF YOU TOUCH MY RIGHT SIDE AGAIN I’M GOING TO STAB YOU TO DEATH!’ or “YES! YES! YES! I NEED YOU TO AVOID MY CHEST AREA AT ALL COSTS!”

That’s the kind of stuff that can turn an evening of “Netflix and Chill” into an evening where you actually watch Netflix and chill. 

But even with so many things working against the sex lives of those with chronic pain, that doesn’t mean people should give up. 

For one, that old saying about how, “You can have great sex without having a great relationship, but you can’t have a great relationship without great sex,” is actually pretty true in my experience. Having sex is an important part of being a healthy couple. Of course, that doesn’t mean partners shouldn’t be understanding of the situation, and our pain levels. What it does mean is that avoiding sex, regardless of how legitimate the reasons for doing so are, will likely put a strain on your love life. 

Also, sex is just a good thing to have in general. It helps your mood, it can be a great pain reliever and stress reducer. And, you know, it’s fun.

So I don’t think patients should just resign themselves to the idea that having chronic pain means giving up good sex for the rest of their lives.

Unfortunately, I don’t have magical solutions to offer people with chronic pain struggling to work sex back into their daily life. But there are a couple things you can at least try.

Frist, there’s always the obvious “talk to your doctor” advice. Yes, I know that conversation can be awkward — both for the patient and the physician. If you’re up for the conversation though, I definitely recommend it. Your doctor might be able to recommend other medications that don’t kill your sex drive, some less painful positions or other techniques to help you out.

In the end though, I honestly think the best thing you can do is be open about the issues without whomever you’re making love to. Just like with anything, talking about what’s going on usually does the most good.

And if you both decide that maybe you can try to get a wire-free bra with a hook in that back because that’s what he’s into, as long as he promises to never touch your right boob, then great! Or, if you decide that having sex just isn’t worth the pain, then that’s great too.

After all, there’s always Better-than-Sex cake in a pinch.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

From Bad to Worse for Pain Patients?

By Pat Anson, Editor

Has the pendulum swung too far against pain patients?

The answer is "Yes" according to some leading pain management experts at the annual meeting of the American Academy of Pain Medicine (AAPM) in Palm Springs.  The AAPM represents 2,400 physicians and health care providers, including some who have stopped prescribing opioid pain medication because they fear prosecution or sanctions if they prescribe to patients who might abuse the drugs.

"There are a variety of primary care doctors that are dropping out altogether (from prescribing opioids). They will not allow it. They're saying everybody has to go to a pain management expert or you don't get anything. And its abrupt," said Bill McCarberg, MD, President of the AAPM. "For that group of patients, you're cutting everybody off inappropriately. There are some of those patients who probably need those medications, who do better with medications."

McCarberg, who volunteers at a health clinic in San Diego, says even opioids with abuse deterrent properties are difficult to prescribe because they are expensive and usually not covered by insurance. He is not optimistic about the continued use of opioids in pain management.

"In my experience over the last year its gotten worse and I think a year from now it will be even worse," McCarberg said. "When you come back here in five years, in ten years, we'll be having the discussion about the pendulum being over here, patients suffering.  About you getting shoulder surgery and getting nothing but acetaminophen to treat your shoulder because nobody is willing to give you more (opioids). That's what I worry about."

"I think that's right. I think the pendulum has swung in the direction of things being worse for patients very rapidly and very dramatically. And I don't think its finished swinging yet," says Bob Twillman, PhD, Executive Director of the American Academy of Pain Management.

"I think its the general atmosphere, the whole focus on opioid overdoses and all of that stuff.  That's what is driving the CDC's actions and every bit of the press that's out there is about that problem. And until we get the other side of the story out there and point out that not treating pain has negative consequences too, including people dying, until we can get that story out there and get some traction with it, patients are in a bad place."

PROP President Speaks to AAPM

Although the AAPM has "very significant concerns" about the quality of evidence and "negative bias" in some of the CDC's proposed opioid prescribing guidelines, it invited a controversial figure who helped draft them to its annual meeting. Jane Ballantyne, MD, who is president of Physicians for Responsible Opioid Prescribing (PROP), served on a CDC advisory panel known the "Core Expert Group." The CDC guidelines discourage primary care physicians from prescribing opioids for chronic pain.

Ballantyne, who gave a talk at the AAPM meeting on "Pain Curriculum Development for Primary Care Practitioners," recently come under fire for co-authoring an article in the New England Journal of Medicine that said reducing pain intensity should not be the primary goal of doctors that treat chronic pain. 

Several patient advocates asked AAPM to remove Ballantyne from the program.

"How, in good conscience, can you include someone with her views about pain teach other physicians, or influence future curriculum for physicians, on how to effectively treat pain? It is clear from her writings that she doesn’t understand pain, or painful disease processes. Should someone with views like this be influencing our present and future doctors?" wrote Ingrid Hollis of Families for Intractable Pain Relief in a letter to the AAPM.

"While I appreciate your concerns about including Dr. Ballantyne as a member of the faculty, the Academy will not comply with your request that it remove her from the program," responded Phil Saigh, Jr., Executive Director of AAPM. "The Academy is committed to the free exchange of information and perspectives among pain physicians and other clinicians.  It is this commitment that ensures that diverse perspectives are examined rather than creating a one-size-fits-all approach to education. To remove Dr. Ballantyne from the program would not be true to that commitment."

Ballantyne's presentation was low key and did not focus on opioid use. She spoke about improving pain curriculum in medical schools, an area where there is broad agreement that change is needed. 

"Pain education has been really, really bad. And a large part of the problem, in terms of primary care, is actually managing those with chronic pain and not having received any education on how to do that," said Ballantyne, who explained that her own education and training in the 1970's focused on pain medication and injections, and did not include other disciplines such as psychology.

"The evidence suggests strongly that entry level pain management training is widely inadequate across all disciplines in the United States. Only a few medical schools in Canada and the U.S. offer courses on pain," she said. "The young primary care physicians that I work with are suddenly faced with this extremely complex disease, chronic pain, and they have only been taught to see it in a unitary way. That's what leads to a very simple treatment goal, which is simply to reduce pain intensity.

JANE BALLANTYNE, MD

"When we treat chronic pain we do an awful lot more or want to achieve an awful lot more than simply reducing pain intensity. We want to improve people's lives. We want to help them function better. We want to improve their state of mind and their mood, and have to pay attention to all the other factors that contribute to the disease. Chronic pain is a complex disease that is not simply a focus on pain intensity. And that's one thing we can really help in our teaching."  

Spreading Awareness and Hoping for a Cure

By Sarah Daniels, Guest Columnist

When I was 25 I decided to reclaim my life. I left an abusive relationship and worked very hard on my physical and mental health. With diet and exercise, I went from 240 pounds to 180 pounds in about 5 months.

I thought losing weight would make me feel better, but as soon as I dropped weight I began to have debilitating pain. It got so bad I could no longer walk. Not only was it painful, I literally couldn’t move my leg. There were days I couldn’t get out of bed.

Most of the pain was in my hips; radiating down my legs into my feet. My doctor had no idea what to make of this so she sent me to a specialist. I waited months for the referral. Finally, my prayers would be answered. The specialist would be able to help me!

Instead they laughed and told me I should join the circus because I was so flexible. I am double jointed in every part of my body. I should have known then that this was just the beginning and it was going to be a long ride.

Four doctors, two physical therapists, and $8,000 worth of useless therapies later, I finally found a specialist who diagnosed me with Congenital Hip Dysplasia. They told me I had a torn labrum, severe tendonitis of the hip, and a shallow socket that permitted my hips to dislocate with even the slightest movement. In order to “fix” me they would do a surgery called a peri-acetabular osteotomy (PAO).

SARAH DANIELS

At the time, this surgeon was one of only two in the U.S. that performed PAOs. It was fairly new but had promising results. It had been three years since the onset of my symptoms, so I was desperate.

An incision was made into the skin, through the muscle, through the nerve, and into the bone. The pelvic bone was then cut in four spots, making it freely mobile and the head of the femur bone was reshaped. Lastly, the pelvic bone was tilted forward, and the femur is fit into the head of the joint. Three huge screws held everything together.

A PAO is one of the biggest major orthopedic surgeries in existence. The recovery was supposed to be 3 months and then I would have my right side done.

It took about 3 months for me to even move my leg on my own. It took 6 months to learn to walk again. Finally, after a year of recovery, I would continue on with my new normal: constant pain.

I had complication after complication from my hip surgery. Two years went by as I told my doctors I was continuing to have excruciating pain. They ignored me and told me it would go away.

I ended up going to a chiropractor when I herniated a disc in my back. After he took the x-rays he came racing into the room. Did I know my pelvic bone was broken in three different spots?

My bones had broken around each of the screws that were holding my hip together. No wonder I was in hideous pain.

I had surgeries to remove the screws, but my health continued to deteriorate. Emergency room visits became a usual thing for me. All of my joints began to fail.

Some days I have to use a wheelchair to get around because the multiple dislocations in my knees, hips, shoulders, and wrists prevent me from using a cane or even crutches.

I finally went to a geneticist and was diagnosed with Ehlers Danlos Syndrome (EDS). It is a group of hereditable connective tissue disorders with a mutation in the collagen, the glue that holds your body together. Symptoms range from easily bruised skin, broken bones and torn ligaments to digestive disorders and life threatening cardiac issues.

This diagnosis was my saving grace. It finally connected everything. On the same token, being diagnosed with an incurable chronic illness is an entire grieving process in its own. It is important to be responsible about recognizing signs and symptoms, but you also can’t let it consume you. You have to stay positive even though there is no end at the light of the tunnel. I began to find different ways of dealing with the pain, deep breathing, meditation, and listening to music. It was tough but I was getting by.

Then another problem developed. I was constantly sick to my stomach and couldn't keep anything down. I spent most of my days throwing up and didn’t know why. I lost 70 pounds. No longer was I only dealing with pain, I had no energy or nutrients to keep me going. I went to a gastrointestinal specialist, who diagnosed me with Gastroparesis.

Ordinarily, muscles propel food through your digestive tract but with Gastroparesis, your stomach's motility works poorly or not at all.  My digestive tract was almost 100% paralyzed. I had to do something or a feeding tube would be in my near future. I had always been overweight my whole life and never thought for a second, I would literally be starving to death.

On top of everything my illnesses had already taken from me, they was now taking my body. I stopped getting my period and couldn’t stop the weight from coming off. I went from a size 12 to a size 0 in a matter of months. Friends would tell me I was lucky I was thin. Lucky? I feared for my life!

I spent most of my days with my head in the toilet, praying I wouldn’t aspirate and die. When I was too weak to sit up on my own, my boyfriend would sit with me, watching to make sure I was safe. I would give anything to be able to eat again, to be able to look in the mirror and see my vivacious frame, instead of the sunken skeletal figure that was there now, but this is a distant reality for me.

Like Ehlers Danlos Syndrome, there is no cure for Gastroparesis. With medication, a new eating plan, and a daily shot to the stomach, I have been able to get somewhat of a handle on my illness.  

In the beginning of this story I was a happy, healthy, outspoken young woman with a great job, and the world on my shoulders. I had infinite possibilities ahead of me. I am writing to you now as a 29-year-old female with the body of an 80-year old.

I completely exhausted my savings due to my numerous surgeries, office visits, and medications. I had to quit my dream job that I loved. I am no longer able to work and had to file for disability at the age of 28.

I was let go from my most recent job after two years because they thought I needed to "focus on my health." I tried to keep my job for as long as I could. It was the last thing that kept me connected to the normal world. They provided my full dental health and vision insurance, which is obviously essential to my life. I’m now stuck with an almost $600 monthly Cobra insurance bill with no idea how to pay it.

I have thousands of dollars of medical debt, I am months behind on my rent and utilities, and at the time of writing, I have no groceries or gas. My illness has taken everything from me. My body, money, job, my positive outlook, independence, and friendships!

I am lucky to have a family that loves me. I have been blessed with an amazing boyfriend that does everything in the world for me, whom I love insurmountably. But even they are overwhelmed. Loving someone with a chronic illness is not always easy and definitely not always fair.

I’m writing this not to get sympathy. Sympathy won't help me. It won't cure me or make me better. I write to you because I want people to know that this horrible illness exists.

About 1 in 5,000 people are affected by Ehlers-Danlos Syndrome and the varying comorbidities associated with it. I want people to know that there are hundreds of thousands of our fellow human beings that are suffering from this rare illness.

Most doctors think if you have EDS it just means you are flexible. I have even had doctors tell me I should join the circus. If I have to, I will single handedly wipe out all of the ignorance surrounding Ehlers-Danlos Syndrome. It has now become my goal to create and spread awareness.

I don't spend a lot of time these days wishing for my old life back. It only depresses me. However, I do take time to think about the future. With medical technology advancing every day, and with the help of others, there is no reason we should not be able to find a cure!

I know this has been a long story to read. It hasn't been the happiest story or the most positive story, but it is my story. I will do whatever it takes to spread awareness. I only ask that you can join me in fighting for this cause!

Sarah Daniels lives in the Detroit, Michigan area. Sarah is a proud supporter of the Ehlers Danlos National Foundation and the Gastroparesis Patient Association for Cures and Treatments (G-Pact).

Sarah would also like you to know that that February 29 marks Rare Disease Day, which seeks to raise awareness about rare diseases such as EDS.

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

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

Post-Surgical Pain Guidelines Reduce Use of Opioids

By Pat Anson, Editor

The American Pain Society (APS) has released new guidelines for post-surgical pain management that encourage physicians to limit the use of opioids and offer “multimodal therapies” to patients suffering from postoperative pain.

According to studies, more than half of patients who undergo surgery receive inadequate pain relief, which can heighten the risk of developing chronic pain, mood disorders and disability.

The 32 recommendations were developed by a panel of nearly two dozen experts that reviewed over 6,500 scientific studies. Most of the recommendations were adopted unanimously.

“The intent of the guideline is to provide evidence-based recommendations for better management of postoperative pain, and the target audience is all clinicians who manage pain resulting from surgery,” said lead author Roger Chou, MD, a prominent researcher who also co-authored the proposed opioid prescribing guidelines developed by Centers for Disease Control and Prevention.

Like the CDC guidelines, the APS guidelines encourage the use of non-pharmacological therapies and non-opioid medications, such as acetaminophen, non-steroidal anti-inflammatory drugs (NSAIDs), gabapentin (Neurotin) and pregabalin (Lyrica). Those treatments would be used along with opioids for post-operative pain.

“Because of the availability of effective non-opioid analgesics and non-pharmacologic therapies for postoperative pain management, the panel suggests that clinicians routinely incorporate around the clock non-opioid analgesics and non-pharmacologic therapies into multimodal analgesia regimens,” the guideline states.

“Systemic opioids might not be required in all patients. One study suggests that it should be avoided when not needed, because limited evidence suggests that perioperative opioid therapy might be associated with increased likelihood of long-term opioid use, with its attendant risks.”

Chou says using multiple approaches to pain management provides better pain relief than a single analgesic.

“Randomized trials have shown that multimodal anesthesia involving simultaneous use of combinations of several medications -- acting on different pain receptors or administered through different techniques -- are associated with superior pain relief and decreased opioid consumption compared with use of a single medication administered by one technique,” Chou said.

The APS panel also recommends that non-pharmacological therapies, such as cognitive behavioral therapy and transcutaneous elective nerve stimulation (TENS), can be used as effective adjuncts to pain medication.

Other recommendations in the APS guidelines include:

• Adults and children can be given acetaminophen and/or NSAIDs for postoperative pain management
• Oral administration of opioids is preferred over intravenous (IV) administration
• Spinal analgesia (epidurals) is appropriate for major thoracic and abdominal procedures
• Use of benzodiazepines, tramadol and ketamine is not recommended for postoperative pain.
• Clinicians should consider giving preoperative doses of celecoxib (Celebrex) to adult patients
• Gabapentin (Neurotin) and pregabalin (Lyrica) can be considered for postoperative pain relief.  The drugs are associated with lower opioid requirements after surgery.

The guidelines recommend the physicians consult with a pain management specialist when a patient has a tolerance for opioids, or a history of substance abuse or addiction.

“Adequate pain treatment should not be withheld from patients with active or previous opioid addiction because of fears of worsening addiction or precipitation of relapse. In addition to the ethical requirement to address postoperative pain, poorly treated pain can be a trigger for relapse,” the guidelines say. “An interdisciplinary approach using pharmacologic and nonpharmacologic interventions might be required to achieve successful postoperative outcomes and should be considered as part of the perioperative management plan in these patients.”

The APS post-operative pain guidelines, which are being published in the Journal of Pain, was endorsed by the American Society for Regional Anesthesia. A link to the guidelines can be found here.

Patients Betrayed in Pain Management Debate

By Pat Akerberg, Columnist

I’ve often wondered whether the term “pain management” qualifies as an oxymoron.  It’s no secret that the use of opiates for management of chronic pain is a treatment strategy currently under siege – sparking polarizing debate, government intervention, and pushback by legitimate pain patients.

This is my 7th year of dealing with the intractable pain of trigeminal neuralgia (TN) in spite of many failed pain management attempts.  While interacting with hundreds of my counterparts, pleas are constant for alternative ways to effectively treat this notoriously painful disorder. 

Not one of them relishes the potential of being dependent on any medications that they take to manage pain and rightly fear the long-term negative effects that some medications have on our bodies. 

Others whose pain is tamped down to some extent with opiate medication are placed in an untenable Catch-22. They are surrounded by volatile uncertainty and shameful character judgments.

When leading neurological experts and research scientists I saw also shared their own frustrations about the lack of alternatives to or efficacy of most pain medications, my concern heightened.

Will I be left to needlessly suffer indefinitely while this controversy stalls solutions?

From my vantage point the pain management issue seems to involve at least four different issues:

1. Some abuse of opiates

2. Reactionary guidelines that further limit or curtail availability to legitimate patients

3. Multiple competing agendas thwarting progressive strides for pain management alternatives

4. Ethical imbalance placing profits, careers, and CYA (cover your ass) strategies over patient care

Unfortunately the current proposed CDC and FDA backed prescribing guidelines are an ill fated attempt to solve the first problem of opiate abuse (by some) by worsening a second problem for many legitimate patients already living severely hampered lives. This one-size-fits-all, closed regulatory approach upsets me (even though I’m not taking an opiate) because it excludes the input of those afflicted and prolongs suffering, adding more stressful setbacks to pain relief.

Ironically, the very agencies deemed to protect us from harm seem to be intent on a stance that inflicts it in varied ways.

Until we have acceptable options to abate pain (that don’t triangulate pain patients with their doctors/the medical system and the government) or put us at risk; we’ve been involuntarily forced into some part of this fight. 

This issue has been turned into such an embattled political conflict that even patient advocacy groups (with something of their own to protect) seem to be sitting on the sidelines avoiding the crossfire. Patients have become sitting ducks while others who share a stake in the chronic pain pandemic still gain by our plight. 

The third problem is about the forces that work against new research, medical institutions and companies stepping up the pace and availability of affordable new pain treatment alternatives. 

Haven’t they positioned themselves as stakeholders with missions to cure or improve the impact of diseases, disorders, and health threats that result in chronic pain and other debilitating effects?

One of the many forces in play is that rare diseases (known as orphan diseases/disorders) don’t impact enough people to make it financially appealing for drug companies to come up with targeted, affordable medications or institutions to fund research. 

As the lusty price-hiking grab of Big Pharma continues, insurance companies will keep upping their premiums and deductibles to protect their profit objectives.  While for us affordability is our burden.

Yes, the fourth problem is all about return on investment and profits weighted against some deemed acceptable number of us who will die sooner or suffer longer while living.

If you suffer from an orphan disease (like TN) you’re likely taking some off-label medication that wasn’t intended to even address your issue.

The National Institute of Health could overcome that lag to progress by applying its’ considerable leverage. It could require that research grants be granted based on collaborative initiatives, findings be openly shared across science/medical institutions, and research dollars pooled, so that discoveries and treatment innovations are accelerated for a win-win.

Why isn’t any of that happening now?  Political power and financial collusions, along with competition among stakeholders, are the short answers.  There’s no political, financial, academic, career, or ethically motivated profit incentive for open, unbiased collaboration to occur. 

As long as our disease centered (versus patient-centered), profit over patientmodel continues, collaboration is a direct threat to all special interests since they currently measure the success of their stake in advancing medical health by their own bottom lines, career progressions, and investor return.  

Until they can otherwise be held accountable to exemplary medical and just ethical standards, there’s no incentive to coalesce and dedicate their collective resources to resolving the pain management needs of millions of pain sufferers.   

It’s the medical/scientific version of our political underbelly, with pain patients involuntarily caught in its’ snare while progress sputters. The result is that effective pain management has been hijacked and diminished medically into a political football playing brinksmanship with the quality of our lives.

There’s so much wrong with how the whole “pain management” situation is evolving for us.  The real blow in all of this for me is the realization that pain patients seem to be left with no representation or clout.

Without representation, I’m concerned that while we’re the ones least able to deal with it; we’ll be left holding the bag to gain more attention, commitment, and reform for real pain management answers.   

I worry about precious time toward new alternatives wasted while the powerful lobby agendas, the government over reaches, our representation retreats, the AMA debates, and the profitable jockey to vindicate their approach.

Until then, it’s hard not to feel betrayed by the downward spiral in societal values, a slippery slope of collusion allowed to operate among some interests convincingly indifferent towards human suffering.

I really want to be proven wrong about pain management becoming an oxymoron.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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

Why Smoking is a Pain in the Neck

By Pat Anson, Editor

Need another reason to stop smoking? What if you knew it was causing that pain in your neck?

That’s the conclusion of a new study being presented this week at the annual meeting of the Association of Academic Physiatrists. In a study of 182 patients who were given CT scans,  researchers found that smokers were more likely to have cervical degenerative disc disease.

“This is another example of the detrimental effects of smoking. Tobacco abuse is associated with a variety of diseases and death, and there are lifestyle factors associated with chronic neck pain,” says lead investigator Mitchel Leavitt, MD, resident physician at Emory University’s Department of Physical Medicine and Rehabilitation.

“Pain and spine clinics are filled with patients who suffer chronic neck and back pain, and this study provides the physician with more ammunition to use when educating them about their need to quit smoking.”

The cervical spine is located in the neck and is made up of bones called vertebrae. Between these bones are cervical discs that absorb shock to the spine. Through the normal aging process, these discs slowly degenerate, which means they become dehydrated and shrink.

In some cases, the drying of the disc may cause cracks and tears, through which some of the jelly-like central portion of the disc may spill out and irritate local nerves. That can result in pain in the shoulders, arms, hands and fingers.

It isn’t only wear and tear that can damage these discs. Some unhealthy habits, such as smoking, can add to cervical disc degeneration.

“Smoking is not healthy for a person’s intervertebral discs given the risk of developing microvascular disease – a disease of the small blood vessels – due to nicotine abuse,” says Leavitt. “Intervertebral discs receive their nourishment from the microvasculature that line the endplates on either side of each disc; when these blood vessels are damaged, the discs do not receive nourishment and this may speed up the degenerative process.”

While smoking has been associated with degeneration in the lumbar spine, this was one of the first studies to make the association with the cervical spine.  The patients evaluated by Leavitt and his colleagues were mostly female (57 percent), and about a third were smokers. A radiologist and a physiatrist – a physician who specializes in physical medicine and rehabilitation – reviewed their CT scans for signs of cervical degenerative disc disease. The amount of damage was rated on a scale of zero to 15.

Current smokers were found to have more cervical degenerative disc disease and were given a "damage score" that was about one point higher, on average. Not surprisingly, researchers also found that aging was associated with worsening cervical degenerative disc disease, but diabetes, hypertension, high cholesterol and high BMI were not.

Leavitt believes more research is needed on other lifestyle factors, such as high fat diets, alcohol use and obesity to see how they relate to chronic back and neck pain.

“Virtually everyone knows that moderate exercise somewhere around four to five times per week is beneficial, plus other lifestyle factors like avoidance of smoking and a proper diet are equally important. However, these topics are usually geared towards heart health, lowering blood pressure, managing diabetes, or controlling other medical conditions, and not specific to the spine,” Leavitt said. “It is one thing to live to the age of 95, and it is another to live to 95 while retaining one's mobility and being free of pain. Lifestyle medicine will likely play a large role in the future of healthcare, and having plenty of data to support lifestyle management is critical.”

Previous studies have found that smoking increases your chances of having several types of chronic pain conditions.

A study of over 6,000 Kentucky women found that those who smoked had a greater chance of having fibromyalgia, sciatica, chronic neck pain, chronic back pain and joint pain than non-smokers. Women in the study who smoked daily more than doubled their odds of having chronic pain.

A large study in Norway found that smokers and former smokers were more sensitive to pain than non-smokers. Smokers had the lowest tolerance to pain, while men and women who had never smoked had the highest pain tolerance.

In a recent study published in JAMA Neurology, Swedish researchers reported that continuing to smoke after a diagnosis of multiple sclerosis significantly accelerates progression of the disease.

Staying Positive But Still Needing Support

By Ellen Lenox Smith, Columnist

It took over 50 years for me to be diagnosed correctly and to finally understand what I have been suffering from for so many years – sarcoidosis and Ehlers Danlos syndrome. The latter is actually something that I was born with.

Every day of my life, I have to work to get through the day in as positive way as I can muster. Yet, it is clear people still don’t understand how brave I am trying to be.  I am still in need of support. I live with two incurable, painful conditions that will keep progressing.

Despite these diagnoses, last month I was discharged by a nurse from a support organization called Vital Decisions. After taking me on as a client on their own initiative last April, it was stated that their requirements had changed to continue with a client.

Since they believe I am doing a good job, with my husband managing my health and making the necessary decisions one has to face, I no longer qualify for their support.  

ellen lenox smith

Believe me, I knew where this conversation was going, for this was not the first time this has happened to me. You put on a smile, adopt a positive attitude, take on your health conditions, work hard to live life with them; and then someone assumes you must be all set and you are sent off on your own. Something is just wrong with this process.

With long term chronic pain, others need to understand that even those of us presenting positively still need their support. It takes a lot of work to keep the spirits up, act pleasant around you, and act like life is normal. Don’t think we aren’t at times scared, overtired, and overwhelmed from living with pain.

And believe me, even on our good days, you would not want to climb into our bodies. So, we still need you to care about us!

I have had friends disappear since my story is too sad to be around. I have also had to live with judgement due to my smile -- which is seen as a sign that I must be doing just fine. But would you rather have me be that miserable person that is angry, lashing out at others, and giving up on finding purpose and meaning to my life?

And, how is it that in that same week I got discharged from Vital Decisions, another doctor sent me a note that his practice is putting me in their new program called the Specialty Care Center, which will help support me with my cardiac issues? Am I the same person that just got let go by my support nurse?

If you see someone you know coping with a difficult medical issue, please don’t assume that they are just fine if they have a smile on their face. Ask them how they are doing, let them vent, care about them, and be proud of them for trying to get through a difficult journey while being pleasant.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

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.

Acupuncture Lessens Fibromyalgia Pain

By Pat Anson, Editor

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

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

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

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

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

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

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

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

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

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

Shocked by Senators’ Letter on Patient Surveys

By Janice Reynolds, Guest Columnist

Last week I felt like my world had shattered.  Sounds extreme, I know, but someone who I believed in had turned on me both as a professional and someone living with persistent pain. It was not only me that Sen. Susan Collins (R-Maine) denied, but the pain community as a whole. 

An article and editorial in the Portland Press Herald told how Collins and 25 other senators had written a letter to the Secretary of Health and Human Services questioning whether patients should be asked about their pain control in hospital satisfaction surveys. After reading it, I felt sucker punched.  I have always supported and believed in Susan Collins, but how can I now? 

“I believe the pendulum has swung too far in favor of controlling pain, although I am not suggesting that the pain people experience is not real,” Collins said, although the rest of her letter certainly suggests that she does just that. (See “Senators Seek to Silence Pain Patients”)

The comment that I find truly disturbing is, “Currently, there is no objective diagnostic method that can validate or quantify pain. Development of such a measure would surely be a worthwhile endeavor.” 

The pain community has battled this notion forever. In 1968 Margo McCaffery wrote that pain is what the person says it is and exists when the patient says it does.  She was heavily ridiculed for that, although the World Health Organization included it in both their position statements on cancer pain and on chronic pain, and considers pain treatment a human right.

SEN. SUSAN COLLINS (R-MAINE)

So much of what Collins said appears to be from the Centers for Disease Control and Prevention (CDC) and Physicians for Responsible Opioid Prescribing (PROP). The comments rather prove my belief that the CDC’s attack on opioids and addiction is really more of an attack on people with pain, no matter the reason. To see the letter and the list of senators who signed it, click here.

The next day the Press Herald had an editorial which proved even worse. “Collins and the other senators question whether it’s wise to put such a high premium on these subjective judgments. Prompt pain relief is appropriate for some patients, but overuse of painkillers can cause harm, and a person in pain will not always be the best judge of whether the care was appropriate,” the paper said.

Please note they are no longer distinguishing between acute pain, pain in a cancer setting, pain in a non-cancer setting, or end of life pain.  They also ignore the fact that “no prompt treatment of pain” causes harm as well (that is why they call it torture). Both articles claim opioids are gateway drugs for heroin. Of course, no acknowledged expert in pain management was even consulted for the articles (because they are all in the pockets of the evil pharmaceutical companies mu-ha-ha-ha).  Interestingly, nobody seems to care that non-opioid pain medication is also brought to us by pharmaceutical companies.

What about these patient satisfaction surveys?  Are they really a problem or is this more hype to discredit people with pain?

As a hospital nurse for over 20 years I cannot think of one time where a provider wrote a prescription for opioid pain medication just to avoid getting a bad patient satisfaction score.  In reality the problem is the exact opposite; doctors and nurses who are bad at pain management, who don’t believe a patient’s report of pain, and who lack the knowledge to effectively relieve pain really don’t give a darn about a bad evaluation. 

There are, unfortunately, still many providers who fit into those categories.  I can’t tell you the number of times I got in trouble with a physician for advocating for a patient. But there are many providers who are good at pain management, knowledgeable, and compassionate as well.  I imagine these are the ones the senators really have a problem with.

Could someone please give me a definition of overprescribe?  It seems, in this case, it would mean prescribing any opioid or making a legitimate effort to manage a patient’s pain. 

In a hospital setting there are many reasons for opioids to be used, as it is the only medication shown to be effective for severe pain.  People can be in pain due to surgical procedures, trauma, intractable pain (pain was out of control at home), broken bones, pain flares, post stoke pain, shingles, gallstones, kidney stones, cellulitis, deep vein thrombosis, myocardial infarctions, cancer metastasis, organ impingement by a tumor, and many more reasons including comorbidities when someone is dying. 

Most times there is a combination of opioids, non-opioids, and non-pharmaceutical interventions (such as warmth or cold, physical therapy; some hospitals even have therapeutic touch and Reiki available).  Many patients’ may have opioids ordered but never need them all. There are also times when opioids are ordered, correctly, for reasons other than pain (gasp).  One thing we know is that untreated or undertreated pain in surgical or trauma cases can lead to persistent chronic pain

The person experiencing the pain knows it best.  Managing it should be a partnership between patient and provider.  There will never be an objective test for most types of pain, partially because it occurs for many different reasons. Someone may have multiple reasons for pain as well, which complicates it even further. 

Pain has a long history of stigma, prejudice and bias.  It may be the stoic nature of many cultures, and partly the bully syndrome that perceives someone in pain as weaker.  People in pain have been seen as malingers, drug seekers, liars, tricksters, and worse.  In women it has been called anxiety or worse. 

The senators want to eliminate two questions used in patient satisfaction surveys: “How often was your pain well-controlled?” and “How often did the hospital staff do everything they could to help you with your pain?”

To say the person experiencing pain is not the best judge of those questions is ludicrous.

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.

PNN Gains Non-Profit Status

By Pat Anson, Editor

This past month marked a couple of important milestones for Pain News Network that I’d like to share with you.

We reached nearly 115,000 readers in January -- our largest monthly audience to date -- and the U.S. Internal Revenue Service approved our application as a 501 (c) (3) non-profit organization. It's always good to see that we're reaching more and more people, but the designation as a non-profit is a significant development that moves PNN closer to financial viability.

When we started PNN almost one year ago, our goal was to raise awareness about the many issues and challenges faced by chronic pain sufferers. We do that through original reporting and commentary about chronic pain and pain management, and our growing network of affiliates has helped spread this reader supported journalism.

None of this would be possible without the work of volunteers, especially the PNN columnists who share their personal stories of struggle and the valuable lessons they’ve learned about living with chronic pain.

I want PNN to continue to grow as a forum where pain sufferers know they can get reliable news and information about their conditions and treatments; not the tidal wave of misinformation and stigmatization pain patients often get from other news sources.

It is your donations, small and large, that will make this possible. All contributions are 100% tax deductible for U.S. taxpayers. Every dollar you donate will be used to support PNN’s mission.

We have partnered with PayPal to provide a safe and secure environment for donations made either by credit or debit card, or directly from your bank. Click on the donate button below to make a contribution.

If you prefer to make a donation by check or money order, please send it to this address:

Pain News Network, Box 261, La Crescenta, California 91214

Thank you for your continued support of independent, balanced reporting about chronic pain and pain management. It was here at PNN that you first read about the CDC’s covert development of opioid prescribing guidelines, Pfizer’s “quiet” recall of Lyrica, how pain patients are often mistreated in hospitals, and many other important stories that are ignored by other media outlets.  

With your help, we can change the dialogue and raise awareness about the real issues and challenges faced by pain sufferers.

How Going Gluten-Free Helps with Fibromyalgia

By Donna Gregory Burch, Columnist

I know some of you probably rolled your eyes when you read the headline of this story. I know that because I used to do the same thing.

Since being diagnosed with fibromyalgia, I've heard countless people talk about how going gluten-free improved their symptoms.

Whenever I'd hear that, I'd always think the same thing: "Fibro can be a living hell of pain and fatigue and everything else. I've already given up part of my life because of this horrible condition. You want me to give up donuts and cake and yeast rolls too? Are you kidding me? My sweet treats are one of the only things that make life bearable!"

But then my new fibromyalgia doctor ordered me to go on a strict anti-inflammatory, gluten-free diet. During the first two months of the diet, I allowed myself one "cheat" meal a week, which usually involved emptying out the complimentary bread basket at my favorite restaurant or shoving half of a pizza down my throat.

My doctor wasn't happy. He said I was just holding up my progress - that by reintroducing gluten every few days, my body didn't have the opportunity to properly cleanse and heal - and that I would never feel the full effects of the anti-inflammatory diet until I cut out gluten for good.

In my gut, I knew he was right. I'd paid good money for his expertise, and here I was not following his protocol. So, on Thanksgiving, I concluded my meal with a slice of pumpkin pie, and I've been gluten free ever since.

After three weeks of no gluten, my daily pain levels had decreased. I was having more low pain days than usual, with my levels falling between 1-3 on the pain scale.

And then I messed up.

I was really tired one night and didn't feel like cooking dinner. I asked my hubby if we could go out to eat at a new restaurant in town. It was the first time I'd dined out since becoming serious about going gluten free. I chose the salmon and veggies with a tarragon sauce. I thought I was making a good choice.

On the way home, I began having stomach cramps. I felt dizzy and nauseous. I knew I'd been exposed to gluten because I'd had these same gastrointestinal symptoms when I'd enjoyed my "cheat" meals previously.

The human body is so incredibly amazing to me. My doctor explained that when someone eats gluten every day, the body compensates as best it can. You may feel bloated or have acid reflux or feel extremely tired, but you'd never connect that to gluten exposure because it's just part of your day-to-day existence. But when you detox from gluten for several weeks, and then reintroduce it, the body will often react strongly to gluten if you have sensitivity to it.

My reaction to that gluten-laden meal reminded me of when I quit smoking years ago. I quit several times before I was finally successful. Sometimes I'd go days without a cigarette, and when I'd resume my bad habit, those first couple of cigarettes would make me sick-as-a-dog nauseous. I recognized that it was my body's way of telling me, "Stop it! I don't like what you're putting in me!"

And here I was, years later, with my body telling me again, "Stop it! I don't like when you eat gluten!"

As a gluten-free newbie, it took me a few minutes to realize the tarragon sauce on the salmon must have been thickened with flour. I figured I would go to bed with a queasy stomach, sleep it off and that would be the end of it.

But two hours after eating that meal, I started to feel a humming, vibrating pain come over my entire body. My arms, back, legs, hips - everything - ached. It was that same old achy fibro pain that I'd been living with on and off for years, and I was completely miserable.

For the first time, I connected what I ate to how I felt, and I was shocked. Logically, I know eating breads, cookies, pastas and other gluten-laden foods aren't good for me. They give me an energy boost, but then I crash, and I feel worse than before. I know they spike my blood sugar and that I shouldn't eat them because I have a family history of diabetes. I know they make me fat and lethargic.

But I didn't know they were increasing my pain. It was a wake-up call for me.

It turns out all of those fibromites who talk up the benefits of going gluten free might be right. Three small Spanish studies support anecdotal accounts from patients that gluten may increase fibromyalgia pain:

• A 2014 study involving 20 fibromyalgia patients who followed a gluten-free diet for 16 months found that "the level of widespread chronic pain improved dramatically for all patients; for 15 patients, chronic widespread pain was no longer present, indicating remission of fibromyalgia. Fifteen patients returned to work or normal life. In three patients who had been previously treated in pain units with opioids, these drugs were discontinued. Fatigue, gastrointestinal symptoms, migraine and depression also improved together with pain."
• A larger 2014 study involving 97 fibromyalgia patients with comorbid irritable bowel syndrome had a "slight but significant improvement in all symptoms" after following a gluten-free diet for one year. "Our findings suggest that further studies of this subject are warranted," reads the study.
• A 2013 study involving seven fibromyalgia patients with comorbid celiac disease found a gluten-free diet "can simultaneously improve celiac disease and irritable bowel disease/fibromyalgia symptoms, and indicate the merit of further research on a larger cohort."

Yes, I know these are small studies, and none of them are double-blind with control groups. But what if? What if giving up cupcakes could reduce your pain, even just by one-third or one-half? That could be life-changing for many of us with fibro!

I've had one other episode where I was accidentally "glutened" at a restaurant. As with the salmon, I again felt gastrointestinal symptoms on the way home, and again, my pain levels increased for a day or two afterwards. I don't think it was a coincidence.

I am a believer now in the benefits of going gluten free, and from here forward, I will be one of those annoying people on Facebook and in the online support groups who, when someone asks if anything helps with fibromyalgia symptoms, will chime in and say, "My pain is much better since going gluten-free."

No one wants to hear that, and I get it! Giving up gluten is really hard. It seems like it's in almost everything! And who wants to envision a life without birthday cake ... without a juicy hamburger on a bun ... without a slice of gooey cheese pizza ... without Grandma's homemade bread? I hate that my body has betrayed me like this - that it now identifies all of my favorite foods as the enemy and makes me pay for it.

But what I hate worse is living every day in increased pain. Knowing that I'm sensitive to gluten gives me a choice. It gives me power, to some degree, over my fibro symptoms. I can still have that slice of pumpkin pie at Thanksgiving, but I know it comes with a price.

Whenever I'm tempted to cheat on my diet, I ask myself, "Is it worth it?" And so far, the answer is no.

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained symptoms. Donna writes about fibromyalgia research, treatments and other topics in her blog Fed Up with Fatigue, including a related post entitled “10 Great Websites for Going Gluten Free When You Have Fibromyalgia.”.

Donna is an award-winning journalist whose work has appeared online and in local newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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.

Wear, Tear & Care: Dressing for Comfort and Success

By Jennifer Kain Kilgore, Columnist

Comedian Patton Oswalt once apologized for all the times he made fun of sweatpants. 

“I thought the pinnacle of mankind would be Mars colony or teleportation. Nope! Sweatpants! That was it. Sweatpants!” he said. “We started with fire and the wheel and writing, agriculture, penicillin, sweatpants. Everything else, we’re just on the downward slope. We did it. We’re all done.”

Oswalt went on to say how one never puts sweatpants on after showering; they’re always worn over “deodorized flesh,” with which I disagree. Why? Because I just took a shower and then put my sweatpants back on. (That’s not the point of this post.)

If you are one of the approximately 60 million people in the world with chronic pain, you know that regular clothes can just hurt. It becomes a burden to wear something as regular as jeans. We operate by feel alone.

What is comfortable? What doesn’t compound our pain? What feels good against our tortured skin?

Sweatpants!

This obviously was a problem for me when I was in the working force. An attorney cannot wear sweatpants to court or when meeting with clients……. or can she?

Behold:

That’s me. This outfit was actually remarkably comfortable. Want to know why? Those are Clarks Kearns Blush boots (literally one of three pairs of shoes I can wear that provide support for my back) and Betabrand’s Dress Pant Yoga Pants.

They work better than, say, black sweatpants or regular yoga pants, because they have fake buttons and pockets. They look like real pants. They are deceptive. It’s a genius idea that fools both court officials and other attorneys into thinking that I am appropriately dressed.

They’re a bit pricey, but they are totally worth it. I own three pairs because regular pants just hurt when my sciatica runs down my legs or my low back starts firing off. I want to be as comfortable as possible, and even well-worn jeans cannot make that happen.

Bonus point for the Dress Pant Yoga Pants: They are one of very few styles that can hide the Quell device.

The jacket is also the same kind of sweatshirt-ish material and was found at H&M.

Betabrand makes a number of products designed for office comfort like the Work-It Skort and the Travel Dress Suit, as well as a zip-up suit "onesie" for men. Not quite sure what I think about that one, but you have to admit it looks pretty convincing.

These can be lifesavers for people who choose clothes by comfort level instead of presentability, as they allow us to achieve both objectives instead of them being mutually exclusive.  

The bottom line is that chronic pain patients no longer have to make concessions when it comes to fashion. We don’t need to go outside looking like hobos just because we feel terrible.

It’s common knowledge that by looking good, we can fool ourselves into feeling good. It’s difficult to face the world when you are only armed with sweatpants and no makeup. That’s why I try to wear even just base makeup on a daily basis; you never know who might knock on the door or who you might run into while outside the house, but more importantly, I like feeling pretty.

Sometimes it’s hard to get the motivation even to put on the Betabrand pants, because I associate those with work now. However, I know that when I wear them, I look like I belong in the professional world… and that feels great. 

J. W. Kain is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

You can read more about J.W. on her blog, Wear, Tear, & Care.  

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.

Facebook Pain Groups Attacked by Spammers

By Pat Anson, Editor

The websites all have innocent sounding names, like Personal Medical Treatments, Personal Health, and Health Care Solutions Plus.

Their articles also sound interesting, with titles like “7 Ways to Relieve Fibromyalgia Pain” and “Alternatives Treatments: The Rx for Chronic Pain is Changing.”

But when you dig a little deeper things don’t add up. The websites have no advertising, so how are they funded? Why do they all seem to be based in Pakistan or Panama?  Did “Zafar Iqbal” really write that article about alternative pain treatments in Duluth, Minnesota?

And why are all of their articles apparently stolen from other websites – a clear violation of copyright laws?

Those are some of the questions being asked by administrators and members of chronic pain support groups on Facebook, who have been deluged with thousands of links to these bogus websites for the last few months.

The links are usually posted by new group members who only recently joined Facebook and have very little information in their profiles. As fast as the bogus links and the suspicious posters are deleted, they return under new names with new links to articles such as the following:

"To a Friend With a Chronic Illness Who’s Feeling Hopeless" was apparently stolen from The Mighty.com. 

“How Painkillers Make Headaches and Chronic Pain Worse Over Time" was taken from TheHeartySoul.com.

“In the Shadow of an Opioid Crisis, Super Bowl Ad Spotlights Chronic Pain Patients” (allegedly written by the mysterious Zafar Iqbal) was copied and pasted from StatNews (the real author is Rebecca Robbins).

Pain News Network has been victimized in this scam too. Columnist Ellen Lenox Smith emailed me this week asking why her column “8 Tips for Patients Newly Diagnosed with Ehlers-Danlos” reappeared without permission in CaringCare.Info.

“Is this appropriate?” Ellen wanted to know.

No Ellen, it is not. It’s fraud and copyright theft.

The problem has become so acute that the administrators of a large Facebook support group recently closed it to new members.

“Due to an attack by plagiaristic & duplicate posters we are putting a temporary moratorium on new members,” wrote Barbara Mills, who made the move reluctantly because she knows many pain sufferers are looking for friendship and support in Facebook groups such as hers.

Barbara told me in the recent past she was offered money to post the links herself, but declined.

More is at stake here than plagiarism, copyright laws and unhappy editors like me who hate seeing their articles stolen. I think the ultimate goal of these con artists is to hack into our computers and smartphones. Click on one of their links, and you could pick up an unwanted cookie, computer virus, or even a “keylogger” that can be used to record your internet activity, usernames and passwords.

People who sign up for their newsletters by providing their email address are also putting themselves at risk, not just for a deluge of spam, but for malicious programs such as a "trojan horse" they could download without even knowing it.

If you’re a Facebook member and you see these suspicious posts, what should you do?

• If you’re not familiar with the website, don’t share or “like” it. That only spreads the post like a virus to your friends and other groups. It’s also precisely what the spammers want you to do.

• If you see someone constantly sharing links to bogus websites, check the poster’s profile. If they have only a few photos, no friends and just recently joined Facebook, chances are they are fake.

• If you’re an administrator and you see these bogus posts appearing in your closed Facebook group, you may have to start deleting offenders and close your group to new members until the problem stops.

• Report suspicious posts and posters to Facebook by clicking here.

• Keep your anti-virus software up-to-date and your firewall on.

If you’re feeling really adventurous, you can visit HypeStat, which I use to see how legit a website is.  Enter the website’s URL, click search and scroll down the page. You’ll see what country a website is registered in and how long they’ve been around. 

You might even run into the prolific Zafar Iqbal, who has apparently abandoned Duluth and is now writing articles about British Airways crews making peanut allergy announcements and how cannabis kills 30,000 people a year.  

Facebook has been a godsend for pain sufferers around the world seeking support, friendship, and solutions to their chronic pain issues. It’s a shame that others are taking advantage of the pain community -- which is already under attack in so many ways, not just online.