May 19, 2015

A Pained Life: Where Can I Get Help?

May 19, 2015/ Pat Anson

By Carol Levy, Columnist

Pain News Network recently featured a story about a California woman with chronic pain who is in such dire financial straits that she resorted to asking for help through the crowdfunding site GoFundMe.

After reading the article I realized how many of us are in the same or a similar situation. I often read and hear the laments:

"There is no one I can go to for help."

"I am alone in this and have nowhere to turn."

"Where do I go for help?"

I have been there myself.

But there are help resources out there once you know where to turn. Here are some of them:

Meals on Wheels provides meals, companionship and safety checks to seniors and others with mobility issues.

Dental Lifeline Network provides donated dental services. They will connect you with a dentist who will make up a treatment plan for you and complete all the work he feels you need. The downside is you can only use this service once.

1-800-Charity Cars provides donated vehicles for free to a wide array of individuals. Their list of those they help include the "medically needy."

The National Association of Free & Charitable Clinics provides a range of medical, dental, pharmacy, vision and behavioral health services to economically disadvantaged Americans. Their website can help you find a free or charitable clinic near you.

Social Security’s Ticket to Work program provides work opportunities to people on disability.

This Google search page has information on dozens of programs that offer free lifeline cell phones.

PsychCentral has a list of hotlines available 24 hours a day that can help you with whatever assistance you need from substance abuse to domestic violence issues.

Suicide Prevention Lifeline links crisis centers across the United States into one national chat network that provides emotional support, crisis intervention, and suicide prevention services.

Suicide.org has a listing of suicide hotlines by state.

The Samaritans is a hotline that offers emotional support to people dealing with every kind of problem, including illness, trauma and loss.

The National Health Information Center has an extensive list of toll free hotlines for health information.

In addition, you can call your state capitol or local township to find out about local social services, which may include counseling, food, setting you up with an aide, and other in-house help.

Often a local senior center will provide services. At mine there are professionals who come in every so often to offer free assistance, such as a lawyer who deals with legal issues, accountants who help with taxes, and insurance agents who can help sort out what is the best plan for you. They may also have members who are willing to provide transportation at low or no cost, or other services like cleaning and making meals.

Also, if you live near a major university, often their professional schools (legal, dental, business, etc.) will offer reduced cost services where faculty will double check the work they do for you.

Our lives are hard enough as it is. These various numbers, services and people can help to make them a little easier.

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.

May 14, 2015

Hillary Clinton: Please Be Responsible for Opioids

May 14, 2015/ Pat Anson

By Lynn R. Webster, MD

While Presidential candidate Hillary Clinton only recently announced her bid for office in 2016, she has already declared a few important issues on her presidential agenda, including the ever-important opioid crisis in the United States.

Many are chiming in to offer their best solutions to curbing the opioid abuse epidemic; sadly, many of the proposed solutions fail to promote and fund safer alternative therapies for people suffering from chronic pain who rely on opioids to live a semblance of a normal life.

I applaud Clinton’s desire to work toward a safer, opioid-free world. It’s a goal we should all aspire to. In order to realize it, however, we must not forget those people who rely on opioids to get through the day in the absence of alternative treatments.

Here is what Hillary Clinton must consider as she seeks to curb opioid abuse:

Redefine the prescription opioid problem as the chronic pain problem

Prescription opioids have garnered a great deal of attention for the possible health risks involved in taking the drug. While it is easy to get caught up in the whirlwind of bad press, it is still important to remember why opioids are such a prominent treatment form in the first place.

More than 100 million people in the United States suffer from chronic pain, meaning a third of the entire country may rely on some form of medication to make their lives better. Pain ranges in severity, with many suffering from severe pain that makes it difficult to live a normal life.

While no medical professional advocates that opioids should be the first line of defense, in some cases, they happen to be the only thing that works for a patient. Trying to end opioid abuse without addressing the needs of those who rely on the drug may make the problem of chronic pain worse.

Understand why prescription opioids have risen in popularity

In 2007, Americans spent $34 billion in out of pocket expenses to cover the cost of alternative forms chronic pain treatment. To be clear, opioids are not the only means of treating chronic pain. Alternative therapies exist, but are woefully underfunded by payers. As a result, many patients with severe chronic pain, those who struggle to get out of bed, who sometimes lose their jobs, must rely only on what their insurance covers – in most cases, that form of treatment is opioids.

The chronic pain community needs access to safer alternative therapies. We need to invest in research to bring even more alternative therapies to the market, and crucially, insurance companies must then cover those alternative forms of care.

In 2012 the National Institutes of Health (NIH) spent only about 400 million dollars on chronic pain conditions but more than 2.5 billion dollars was spent on drug and other substance research. We certainly need to find safer and more effective therapies for addiction but some of the current cost associated with substance abuse it due to the limited options to treat the number one public health problem in America: pain.

Stop stigmatizing patients who currently rely on opioids

Alternative forms of medication that could potentially help chronic pain patients and decrease the demand for opioids remain underfunded and under-researched. Despite being one of the largest health researchers and sponsored by the U.S. Department of Health and Human Services (HHS), the NIH continues to operate on a shoestring budget.

Despite the lack of options for alternative therapies for chronic pain, the topic of opioid abuse has become a popular topic in the media, and sadly, caused an increase in stigmatization of patients who use opioids for pain management. Patients have reported reluctant doctors and pharmacists unwilling to prescribe necessary medications.

The DEA has rescheduled hydrocodone as a Schedule II drug, leading to a series of unintended consequences with which patients today are left to suffer. Many patients report feeling like drug addicts for simply trying to fill their legally obtained prescriptions.

Require all opioids to be abuse-deterrent

Abuse deterrent formulations (ADF) have been shown to curb some forms of opioid abuse, while maintaining the benefits for patients that need the drug. Unfortunately payers have priced these safer formulations so that there is little incentive for market adoption. HHS should lead the way and negotiate deals with manufactures to make ADFs no more expensive than generic alternatives to patients.

Remove methadone as a “preferred” drug

While the use of methadone as an analgesic for chronic pain has expanded in recent years, it shows up in mortality reports with a higher frequency than other opioids. Despite the evident risk associated with this drug, many states have listed it as a “preferred” analgesic in treating severe chronic pain, largely due to its low cost and savings for publicly funded health plans.

The American Academy of Pain Medicine holds that methadone should not be a preferred drug unless special education is provided, and that it should never be the first choice in treating chronic pain.

The opioid crisis is not a black and white issue. Until we stop treating it as such, we will not be able to tackle the problem at its root. Eliminating opioids does not alleviate the problem, end patient suffering or acknowledge what the true issue is. Millions of Americans suffer from chronic pain, but very few have access to multiple options to manage their pain.

Through an increase in funding and research of alternative therapies, implementation of ADF’s and greater coverage by payers, we can finally begin to treat the opioid epidemic in a safe and responsible way – a way that does not hurt the millions of Americans who rely on opioids to get out of bed, to play with their children, to get through the day.

Lynn R. Webster, MD, is Past President of the American Academy of Pain Medicine, and vice president of scientific affairs at PRA Health Sciences. He is a Pain Medicine News editorial board member and author of a forthcoming book, “The Painful Truth.” He lives in Salt Lake City. Follow him on Twitter @LynnRWebsterMD, Facebook and LinkedIn.

This column is republished with permission from Dr. Webster’s blog.

May 11, 2015

My Life with Trigeminal Neuralgia

May 11, 2015/ Pat Anson

By Pat Akerberg

Most of us don’t focus on the idea of pain until we find ourselves in it for one reason or another. We just know that we’re glad when it’s gone.

But what if it doesn’t go away?

Challenging conditions occur for some of us that catapult us into a life of chronic, intractable pain. You know you are one of the unlucky ones when meetings with doctors end with statements like:

“There is nothing we can do.”

“You’ll just have to live with it.”

“It’s all in your head.”

That last statement is the one that literally began my life-altering journey with pain. An outgoing, upbeat owner of a thriving consulting practice, I was on a business trip enjoying dinner with a favorite client six years ago. My meal started with a typical salad. By the second bite, I was writhing through volleys of shocking pain shooting through the roots of my teeth on my left side.

I later learned that this neurological disorder of the 5th cranial nerve was trigeminal neuralgia -- also known as the “suicide disease” or “worst pain known to mankind.” I had to cut my trip short and fly home to see my dentist, pronto. Little did I know then that this event would mark the end my of work life, one of the growing list of ongoing losses for me to grieve.

I was both unfortunate and fortunate during my short search to find a proper diagnosis, one that often takes many months or years to receive. Unfortunate in that trigeminal neuralgia (TN) is so rare, the cause is unknown, treatments do not offer a permanent cure, and sometimes create more pain issues. Fortunate in that I escaped the needless root canals or extractions that most are subjected to prior to an accurate diagnosis.

Research became my middle name as I sought to learn everything that I could to get my problem “fixed.” I was driven to get back to my career and serve my clients. Research collectively pointed to an invasive brain surgery done by a neurosurgeon. It seemed to have the best odds for a cure, with the least chance of further damage to the nerve.

Unfortunately, permanent nerve damage is exactly what occurred. Imagine my concern when I awoke from surgery with my face immovable; frozen like a block of concrete, numb with pulling sensations, and the stabbing pain in my teeth now constant.

The neurosurgeon who held out a sure cure quickly distanced himself -- perceiving me as “too anxious” about the devastating impairments and pain frequency. With dispatch and without explanation, my case was closed.

Left on my own to seek out answers and help, I pursued consultations with several other leading TN experts. With honesty and compassion, each one delivered the same bad news: medicine and science have not caught up with how to effectively treat a damaged trigeminal nerve. Advising against further procedures, my lifetime membership into the intractable pain club was validated.

“Invisible” Pain

Being a co-habitant with an intrusive bully like intractable pain has been all consuming. Any illusions I had of control have been shattered.

There’s also an invisible aspect to my pain that can create issues with believability.

Most people are unaware of orphan diseases like trigeminal neuralgia, and have little understanding and compassion towards those who have them.

Family members, who are turned into caregivers overnight, scramble to figure out how to relate to a frightening pain condition. Many close friends eventually drift away when you don’t get better, are unable to keep up, or cancel plans too often. And busy medical professionals can skeptically question what they cannot see or touch.

That’s partly because we are so often judged by how we look versus what we say. If we don’t look sick or in pain, then the erroneous assumption follows that we can’t be that bad. But we can be!

When I report that I am unable to chew solid food (eat out), talk, smile, laugh (socialize), move my face or have anything touch it (brush teeth, take walks, exercise) without triggering unbearable facial pain; most people can’t square such an unthinkable loss of natural life functions with how I appear to them.

I agree. It is hard to fathom, yet with neuropathic pain disorders like TN, simple things that normally don’t cause pain now do. Combine those quality of life diminishments and misconceptions with disabling pain and the ingredients for a lonely, isolated existence can’t be denied.

Often I feel as if I am living in an inescapable bubble, missing out while the rest of the world goes by without me. It takes tremendous fortitude daily for me to counter those negative effects in my life with meaningful ones. Some days are more successful than others.

Like most who suffer with chronic pain, the search for any kind of relief becomes a way to keep hope alive. In the meantime, I do find it helpful to post, blog, and reach out to connect with people like myself whenever I can. It reminds me that I am not alone in this often debilitating journey.

Pat Akerberg lives in Florida. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum.

Pat is also a supporter of the Trigeminal Neuralgia Research Foundation.

Pain News Network invites other readers to share their stories with us.

Send them to: editor@PainNewsNetwork.org.

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

May 05, 2015

My Life with Spinal Stenosis

May 05, 2015/ Pat Anson

By Brandis Standridge

I was a young, 16-year old track athlete the first time I experienced my back “going out.” The spasms, the pain and the sciatica were horrible.

My family physician did everything right and I learned how to manage my symptoms for the next twenty years, although each time by back went out it was a little worse than the last.

At 37, my back went out again. I found out that I had severe spinal stenosis on multiple levels due to facet and ligament hypertrophy. Basically, osteoarthritis had overgrown the ligaments and joints in my spine so badly that it was crushing my spinal cord on 10 levels.

I was referred to several pain management specialists. All of them were horrible. I had to fill out lengthy questionnaires and they refused to give me pain medication unless I consented to their procedures.

They pushed for spinal injections and for fusion surgery, even while admitting the surgery had only a 50/50 success rate. I refused.

Never in my entire life have I felt as segregated, helpless, victimized, and scared as I have dealing with these specialized "professionals.” After the last one, I returned to my family physician in tears and told her I would rather live in agony than be forced into procedures and treated as if I were some local street addict before they even knew me.

Two years ago I had to move. My doctor gave me a letter of reference, medical and MRI records, and a report from my state pharmacy board. All of this was to help the new doctor with the vetting process to help get me treatment. But, it started all over again; the assumptions, ultimatums, and power plays: "If you don't do this, you won't get medication.”

Once again I refused to be without choices or a voice of my own.

I am a former social worker. I know how to advocate and refuse to be pushed into procedures that will more than likely hurt me more in the long and short term. I refuse to let doctors push me into places where I have no voice, where I am not able to be a member of my medical treatment team.

I did eventually find a doctor. Our relationship is a bit tense at times but I am receiving the care that I choose.

We have a right to choose our medical procedures without fear of punishment. We have a right to be active in our treatment and to live as pain free as possible.

Never lose faith in yourself. Never stop having hope. We are chronic pain warriors, not victims!

Brandis Standridge lives in Idaho.

Pain News Network invites other readers to share their stories with us.

Send them to: editor@PainNewsNetwork.org.

May 04, 2015

A Pained Life: The Balancing Act

May 04, 2015/ Pat Anson

By Carol Levy, Columnist

It is time for a renewal for my pain meds but I have a number of pills left. I was excited for a few seconds. Maybe the pain has been better so I need fewer pills!

And then I thought about it a little bit more.

It is not because the pain has lessened.

I realized I have stopped doing a lot of what I used to do. It was not the pain that had backed off. It was a reduction in my willingness to do things that trigger pain.

I had been working on a line of greeting cards that I both wrote and illustrated. I had also created a doll and made pins of the character that had her jogging, playing the trumpet, skating and more. I had hoped to learn to sew and bring the doll to market.

Looking back, I realized I stopped working on all of it a few months after my brain implant stopped working. I had not realized it had been helping reduce the pain.

I still had the eye usage and movement pain that caused me to be unable to do any consistent eye work for more then 15 - 20 minutes -- before the severe and often unrelenting pain started.

Apparently, the stimulator had reduced the anesthesia dolorosa (phantom pain) in the left side of my face. And now that it had failed, the weight of small plastic glasses or the use of facial muscles (tight as a result of facial paralysis) set off pain again.

I had moved from my house to a small apartment. Well heck, that‘s why I’m not doing things. No room to do my crafts and art.

That made sense, except I had stopped before I sold the house, when I had an entire room devoted solely to my art and crafts work.

So what stops me?

The pain, of course. But it is also the fear of pain.

The thought occurs: I need to work on the doll, the cards, even this column, and immediately the next thought comes: But then it will set off the pain, or make it worse if it is already in play.

It is a game of balance and juggling.

Do I give up on the things that make me happy, give me a sense of accomplishment and purpose, because the pain will be bad, even unrelentingly bad?

Or do I give up?

Lately my choice has been the latter, maybe not consciously, but a choice nevertheless.

At what point and how do we make the choices balance out?

I wish I knew.

I only know that right now, for me, the pain is doing the choosing for me.

It is a decision most of have to make at some point. Can we master the pain or does pain become the master of us?

Maybe, as long as we do not make it a permanent decision, it is okay now and then to give in to the pain and the fear. Maybe it is a healthy way of taking care of ourselves. Not a capitulation, but a short term concession.

And that is not always such a terrible thing.

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.

May 01, 2015

Why You Should Consider Medical Marijuana

May 01, 2015/ Pat Anson

(Editor’s note: Pain News Network is pleased to welcome Ellen Lenox Smith as our newest columnist. Ellen has suffered from chronic pain all of her life, but it wasn’t until a few years ago that she discovered the pain relieving benefits of medical marijuana. In future columns, Ellen will focus on marijuana and how it can be used as pain medication. Medical marijuana is legal in 23 U.S. states and the District of Columbia. But even in states where it is legal, doctors may frown upon marijuana and drop patients from their practice for using it.)

By Ellen Lenox Smith, Columnist

Why -- at the age of 57 -- would one ever consider turning to medical marijuana?

I wondered the same thing after being sent to a pain doctor just before another surgery in 2006. After reviewing my records and seeing that I was unresponsive to pain medication, the doctor clearly had no idea what to suggest, except trying medical marijuana.

I was born with Ehlers Danlos syndrome and later also added sarcoidosis to my life. I was living with chronic pain that was preventing me from sleeping, thinking straight, and functioning.

From birth, I had one issue after another reacting to medications. And after 22 surgeries, you can imagine the horror of all I had to endure and the added pain of never knowing the proper relief my body could have from pain medication. Eventually, a DNA drug sensitivity test was ordered and it confirmed I could not metabolize most drugs. This meant no aspirin, Tylenol, or any opiates.

I took the advice to try medical marijuana with tremendous trepidation. At that time in Rhode Island, you either had to grow your own or buy it on the black market. Since growing takes about three months, I decided the only way to find out what marijuana would do for me was to find a source and give it a try.

When I was able to find some marijuana, I ground it up, heated up some olive oil and let it release the medicine into the oil. I had no choice, since I was told by a pulmonologist that smoking marijuana with sarcoidosis in the chest would be fatal. I wanted to try a different way to administer it.

That night, I measured out one teaspoon of the infused oil. I mixed it with some applesauce and one hour before bedtime, I swallowed it down. I remember being scared -- for I am not one that likes to be out of control of my body. Having smoked marijuana once in college, I hated that sensation.

As soon as I took the dose, I went to my husband and warned him that I had taken marijuana and to keep an eye out for me. I was convinced this was a stupid thing to be doing and I would be stoned all night.

One hour later, we got in bed, I closed my eyes and before I knew it, it was morning. I had slept the whole night, never waking up once!

I woke up refreshed, not groggy, and ready to take on life again. I had no “high” or stoned sensation like you would guess would happen.

I learned quickly that someone in pain does not react the same way to cannabis as someone who uses it for recreational reasons. The brain receptors connect with the THC and cannabinoids (the active ingredients in marijuana), and provide safe and gentle pain relief.

I was shocked and thrilled with the result. My husband and I quickly got to work setting up a legal way to grow marijuana. I realized that life was directing us to new topic we just had to advocate for.

If I was scared to try marijuana, there is no question that others felt the same way -- and we had to let them know how amazing it really is. Society brought us up to be negative about marijuana, yet it was used in our country many years ago and even sold in pharmacies. The success of this medication was squashed, and we were all led to believe that it was bad and dangerous.

What we learned is that no one dies from using marijuana, no one develops organ damage, and with a body in chronic pain -- you can regain your life back.

Are my conditions cured? No, they are both incurable. But I have been able to advocate, think, feel and live again thanks to using medical marijuana.

Don’t be scared. Consider how much safer this medication is than all the other pain relief choices out there. Turn your body and your life with pain around. You won’t regret it.

Ellen Lenox Smith 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.

If you have a question for Ellen about medical marijuana, leave a comment below or send it to editor@PainNewsNetwork.org.

April 30, 2015

When Nobody Believes You

April 30, 2015/ Pat Anson

By Jennifer Martin, Columnist

“It’s all in your head.”

“Your doctors are wrong.”

“You don’t really feel as bad as you say you do.”

“You must not really be in that much pain because you look fine.”

These words are far too common in the ears of chronic pain patients. They can make one feel isolated, alone, and as if nobody cares.

One of my patients told me the other day, “My husband doesn’t believe I’m in as much pain as I say I am. He thinks it’s all psychological.”

A week earlier, a friend told me, “No matter how many doctors and specialists I have been to, my family still does not believe my diagnosis. They think it is wrong. I feel like I have to hide my pain around them.”

I listen to story after story from patients and friends with chronic pain stating the same thing: that family members, friends, doctors, co-workers, teachers, etc. do not believe they are in as much pain as they say they are. Often it’s because they look fine on the outside.

They have told me they feel like they are whining about their pain, that people just brush them off or that they feel guilty for even talking about their pain.

They ask me, “What’s the point? I feel like nobody believes me anyway.”

No matter how many times I hear these stories, it still angers me. Chronic pain is not something that anyone should feel like they have to convince another person of. It is not something to feel guilty about and it is not something anyone should feel like they have to hide -- especially from those closest to them.

Unlike having diabetes, cancer or a broken arm, most people do not understand chronic pain and the effects it has. And many who think they understand are misinformed.

What they often don't understand is that chronic pain sufferers don’t always look sick. Because their pain is chronic, they have learned to go on and live their daily lives to the best of their ability. Just because you can’t physically see someone’s pain, that doesn’t mean it is all in their head and it doesn’t mean they are fine.

And being told that their doctor must be wrong or that they should hide their pain only makes things worse.

When someone is diagnosed with chronic pain, they want more than anything for that diagnosis to be wrong. However, more times than not, the diagnosis they receive, especially if they have been to multiple doctors, is correct. After the shock and denial has worn off, that patient, more than anything, is going to need support and acceptance, not criticism and disbelief.

Being diagnosed with a chronic condition is life changing, even for the strongest individuals. It means finding a new normal, contending with things that are unimaginable and going through life feeling like those closest to you will never understand.

It means trying to make sense of this new person they have been forced to become and the new reality they are now living. All of these things could be managed just a little easier by hearing the simple words, “I believe you.”

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness.

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases, as well as other types of chronic pain.

April 29, 2015

National Pain Strategy: A Rough Beast?

April 29, 2015/ Pat Anson

(Editor’s Note: Earlier this month, The National Institutes of Health (NIH) released a draft copy of its National Pain Strategy, a long awaited report designed to advance pain research and healthcare in the U.S. The report identifies several areas where the healthcare system is failing pain sufferers and how it can be improved

A coalition of 17 chronic pain organizations called the Consumer Pain Advocacy Task Force was quick to endorse the National Pain Strategy, and is now lobbying the NIH to create an oversight body to implement the plan and provide funding for it

David Becker is a social worker, patient advocate and political activist who believes the needs and concerns of pain sufferers are not adequately addressed by the National Pain Strategy.)

By David Becker

The Consumer Pain Advocacy Task Force started promoting the National Pain Strategy (NPS) less than a week after it was made public. Obviously they didn't wait to hear from their members or people in pain -- as they are intent on seeing that rough beast of a plan be born no matter what people in pain think or want. The NPS is not "urgently needed" as they claim.

The NPS did not put a price tag on any of its plans or estimate how much their plan might save in costs; or how much the prevalence of painful conditions might be lowered or how much incidents of healthcare disparities might be reduced.

It is clear the government didn't want to include clear performance measures in the NPS. They do not wish to be held accountable to Americans or people in pain if the plan doesn’t work.

I do not support this thinly veiled occupational strategy that serves special interest groups without regard to the public good. Like a box of chocolates -- you don't know what you’re getting with this plan.

It is a big lie to say that the biopsychosocial model or interdisciplinary care meets the evidence based pyramid standards. Not enough research on their paradigm has ever been done and what little there is does not provide strong evidence for their paradigm over treatment as usual.

This plan has failed to learn from the mistakes of the past. A decade of pain control and research was a failure. It based its efforts on the “experts” -- as does the NPS. The more things change in pain care the more they remain the same. And people in pain remain condemned to the failed strategies of the past. The NPS, essentially, is nothing new.

It is clear that the 80 people who created the NPS don't have "the right stuff.” They have left too much to the imagination with their plan and leave out any plan for multi-morbidity or for treatment burden, and don't allow for an ongoing dialogue with people in pain.

To paraphrase Immanuel Kant, “We can think what we want, as long as we obey.”

The NPS was not a conversation with people in pain. It is a top down reductionist strategy by special interest groups to maintain their power and prestige. It will do very little for people in pain or address the ever rising economic burden of poor pain care.

As Helen Keller wrote, it is a terrible thing to see with no vision. The NPS fails to see much of the problems in pain care, failed to listen to the dried voices of people in pain, and offers no inspiring vision to address the many problems in pain care. The NPS is one rough beast that slouches toward Bethlehem and should never be born.

It is tragic that America can’t get it right when it comes to pain care. The politicos are anti-democratic and too ignorant of the real problems to create a sophisticated model or plan for dealing with pain.

My official comments to the NPS will excoriate their claims to expertise and their claims that they care about pain in America. But no article or comments will stop this rough beast from being born – too many organizations have been working hard to make it a reality.

What do you think? You can read the National Pain Strategy for yourself, by clicking here.

The NIH is accepting comments on the NPS until May 20, 2015.

Written comments can be emailed to NPSPublicComments@NIH.gov. They can also be addressed by snail mail to Linda Porter, NINDS/NIH, 31 Center Drive, Room 8A31, Bethesda, MD 20892.

April 27, 2015

Miss Understood: Surgery is a Big Deal

April 27, 2015/ Pat Anson

By Arlene Grau, Columnist

A few weeks ago I had my first scheduled surgery, a synovectomy of the right wrist, to repair some of the damage caused by rheumatoid arthritis to my wrist joint.

I've had numerous surgeries in the past, but none before were the result of my auto immune diseases. I was first diagnosed 7 years ago, at the age of 22.

It wasn't until I met with my orthopedic surgeon that I realized this may be the first of many surgeries I may need. I just didn't expect to need one when I was still in my 20's.

I guess you could say that there are many misconceptions when it comes to what pain sufferers have to endure and what the timeline is for everything because no two people are alike.

When I told people about the procedure I would be having, some of them were compassionate and offered help if I needed it during recovery. Others assumed I would be on my feet and back to normal within the first week. I only knew what I was being told by my surgeon -- and to me it was a big deal.

The type of surgery itself isn't dangerous, but I was more concerned with the fact that I would only have the use of my left arm while I recovered. Not only that, I had a nerve block to help me deal with the pain. This meant that for the first week I wouldn't be able to feel my right arm and I would have no control over it.

I had asked several friends for help with dinner, since I was unable to cook, and to my surprise the people who were the busiest and I hadn't seen in some time came to my aid.

Still, I felt like most people thought the surgery wasn’t very invasive and I probably had very small incisions, which meant I shouldn't be in much pain. Maybe they thought I was trying to milk my situation and get sympathy, but that was never the case.

I decided to post a picture of my wrist after my first cast was removed, something I regularly do when I have procedures done, because I want people to understand what I go through and get it through their heads that I'm not making up the fact that I'm in pain all the time.

It's easy for others to say, "Don't worry about what they think" or "Turn the other cheek." But it's hard to do when you're constantly being judged. The worst part is that at times it's by the people you love the most.

To say that surgery for someone who has chronic pain is no big deal is far from the truth. My fibromyalgia is a magnet for pain and as soon as I woke up from surgery, I began to scream in agony. Yes, the nerve block numbed the pain in my arm, but the rest of my body went crazy.

I felt like I had been in a terrible accident. Any type of procedure or even a regular checkup is painful when it involves another person pressing on the areas where you feel the most amount of pain.

To assume everyone heals the same way is ignorant. Some people would rather believe that though, because it excuses them from having to show compassion towards those of us who suffer on a day-to-day basis.

Arlene Grau lives in southern California with her family. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

April 24, 2015

Chronic Pain: Nobody Tells You How Hard It Is

April 24, 2015/ Pat Anson

By Crystal Lindell, Columnist

Some days, I feel like I can finally lift my head above water. Like I can finally take a breath. Or better yet, a couple of deep breaths.

I feel like maybe I finally have this whole chronically sick thing figured out. And, finally, after being in pain for more than two years, I can focus on living the life I want to live. Like just maybe, this whole chronic pain thing isn’t going to win after all.

And then other days, like today, I wish I was dead.

Days when I wake up with an insane amount of pain in my ribs, and a migraine and I have to work because I’m genuinely afraid I’ll lose my job if I call in sick one more time.

Days when I hate my body so much, because it’s like a jail keeping me prisoner and holding me back from the life I once thought I was born to live. And days when I want to push myself, because that’s what I do, I push things, to the limits, and that’s how I have always lived my life.

But then I do that, I push myself, and I do something crazy like go for a walk, or stay up late, or take a shower two days in a row, and then I literally end up spending the next week on the couch in too much pain to function.

Days when all I want to want in the whole world is to lose weight, but instead, because of my stupid body, the only thing I’m allowed to want is relief from the pain. So rather than putting all my resources into losing some of the 50 pounds I’ve gained since getting sick, I have to use all my resources to just sit on the couch and check my email.

I want so bad to worry about regular things, like whether or not my boyfriend is ever going to propose, or whether or not I’ll get that promotion. I want to think about going for a long walk, and just worry about the weather.

But my body won’t let me. Instead, I have to worry about whether my boyfriend will, or should, stick it out with someone who is so radically different than the healthy, much thinner girl he first met almost 5 years ago. I have to worry about just keeping my job. I have to worry about whether my body has had enough time to recuperate from the walk I took three days ago to allow me to blow dry my hair.

Being sick every day of your life is so much worse than anyone ever tells you. It’s so much harder than anyone can ever explain.

That’s the thing, really. There’s no “talk” with the doctor when you have chronic pain. A medical professional doesn’t pull you into his office, hand you a box of tissues and say, “I’m so sorry to tell you this, but you have chronic pain.” That conversation never happens.

Instead, they scan your test results, say something about sending you to a pain specialist and then they go on with their life, while you’re left holding the pieces. Or worse, they say, “At least you don’t have cancer.”

Everything is suddenly different, but nobody has the decency to tell you that. They just ship you off to another doctor and hand you some opioids.

But your life has been changed forever.

There’s the constant, daily battle with the pain, and the insane side effects from the drugs you use as weapons. There’s the loneliness and the feeling of failure that comes from being stuck on the couch in pajamas all day, every day, even on Easter. There’s the assault on your faith, and the outright attack on your ability to hope. And there’s the way your brain goes crazy just trying to understand how you’ll ever endure like this forever.

There are other days though. And on those days, for a second, you almost feel like you’ve got a handle on the situation, like you’ve got your head above water.

Today just wasn’t one of those days.

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.”

April 09, 2015

A Pained Life: Hey Handicap!

April 09, 2015/ Pat Anson

By Carol Levy, Columnist

You may have seen a story in the news a few weeks ago about an Ohio woman with a prosthetic leg who left a note on the windshield of a car parked in a handicapped spot. The car had no handicapped ID, placard or license plate, so it appeared it was parked illegally, taking a place someone with a handicap (and proper ID) might have needed.

The owner of the car responded to the note in a very, very nasty way – leaving a note of her own:

“Hey handicap! First, never place your hands on my car again! Second, honey you ain’t the only one with ‘struggles.’ You want pity go to a one leg support group!” the note said.

There was no excuse for what she wrote. When a picture of the note was posted on Facebook, it went viral.

I abhor it when I see someone without proper ID parking in a handicapped spot. I have a handicapped license plate which allows me to park in the designated spots. Why should or would someone who does not need it take a space reserved for the handicapped, absent being lazy and self-centered? Does it not occur to them they are possibly making life much harder for someone truly in need?

There is nothing about me that looks disabled (at least not until I take off my sunglasses because of a facial paralysis). As a result, I get "the look" sometimes when someone watches as I exit my car.

Only once did someone actually accost me. She came flying towards me, nostrils flaring, her voice shaking with rage.

"How dare you park there? There's nothing wrong with you!" she said.

I was ready to respond in kind. I could feel the blood rushing to my face. My body tensed, ready to engage.

I should not have to defend myself, especially to a stranger. My pain is none of her business.

And then a calm came over me.

This can be a perfect teaching moment.

“You know, not everyone has a visible disability,” I told her. “I don't need to be on crutches, use a cane or be in a wheelchair to be disabled. I could have lung disease, heart disease, cancer, any number of things that makes me physically fragile and yet look fine to the outside world."

I watched as her face registered a variety of reactions. She went from indignation, to surprise, to maybe even a scintilla of understanding. As upset as I had been by her remarks, a sense of relief replaced my anger. Maybe one more person now “gets it.”

What bothers me about the story of the disabled person leaving the note on the windshield was that she did not consider the possibility that maybe the person who parked there was invisibly disabled.

It is possible that she forgot to put her handicapped placard on the mirror or dashboard. It is possible she was parked legally and legitimately needed the spot.

I see that in myself at times. How dare she park there? Look how healthy she looks!

And then I catch myself. My disability is invisible. How dare I not give others the same consideration without having to prove it.

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.

April 02, 2015

When Your Body Betrays You

April 02, 2015/ Pat Anson

By Jennifer Martin, Columnist

I remember very vividly the day I first began thinking about how much my body has betrayed me. It wasn’t too long after I got home from spending nearly six weeks in the hospital. I was recovering from my first j-pouch surgery.

I was sitting on the couch at my mother and stepfather’s house, feeling depressed, weak and hopeless. I couldn’t see the light at the end of the tunnel. These were emotions I had not experienced to this extent before; even after the years of ups and downs I had had living with rheumatoid arthritis and ulcerative colitis.

I remember my mom telling me, “You need to work through these feelings of depression. We need to get you out of the house. Staying inside all day isn’t going to help. Let’s go to the harbor so you can at least sit outside and be around people.”

My husband told me, “You need to fight. I can’t fight for you if you are going to give up.”

My stepdad said to me, “You are strong. I know you can get through this. We are all here for you.”

While I appreciated all of these sentiments, all I wanted to do was scream at them, “You have no idea what I need! I am not strong! I don’t want to do this anymore!”

And I wanted to scream at my body, “How could you do this to me? Why are you doing this to me?”

I had never felt so lost and confused. And I had never felt so betrayed by my own body, which at the time struck me as odd, seeing as I had been living with chronic illness and pain my whole life.

What I eventually learned from that horrible day was that my family was right. The only way you can begin to resolve these feelings of body betrayal is to do something about it; to learn to cope with your chronic pain or chronic illness, even if you don’t want to.

Trust me, the last thing I wanted to do that day was to go out in public looking as sick as I did and feeling like I was about to collapse. I had no idea how I was even supposed to make it from the car to the nearest bench to sit down. But I did, and while I’m not going to claim that it fixed everything, it did help my mood somewhat.

At that time I was angry at my husband because I felt like he was putting a lot of pressure on me. I felt like in order to fight I had to put on a happy face all of the time and that I was not allowed to experience my pain or sorrow in front of him.

After giving what he said some thought however, I realized what he meant. He didn’t mean that I was never allowed to feel sorry for myself and he didn’t mean that I was never allowed to complain or cry.

What he meant was that I was the only one who had control over how I dealt with my situation and the upcoming struggles I was still to have. I could either give in and give up or I could find a way to work through what I was going through. He couldn’t do that for me.

I remember wanting to tell my stepdad that I felt the complete opposite of strong. I also remember feeling guilty for the support my family was giving me. I felt like a burden and I didn’t want them to give up so much just for me. It didn’t feel fair and it didn’t feel right that just because I was going through something so terrible they had to go through it with me.

Looking back on my experience, I realize how lucky I was and still am to have that kind of support. It is so important for those experiencing chronic pain or chronic illness to have a support system, whether it is one friend, a support group or a whole clan of people.

I have learned that all you can do in those moments when you feel your body has betrayed you is do what you can. We don’t have control over the chronicity of our conditions. However, as much as it doesn’t seem like it at times, we do have control over how we choose to approach our condition.

We can learn to cope by:

participating in enjoyable activities when we feel well
advocating for our health
taking our medications
getting help when we feel depressed or anxious
exercising when we have the energy and aren’t in too much pain
making sure we aren’t isolating ourselves from friends and family
resting when we do not feel well
focusing on the positive things in our lives
learning to manage the guilt we may feel

We can give in to all of the negative thoughts, or we can learn how to combat negative thinking.

We can let our pain or illness define us or we can learn how not to let that happen.

We can give in and give up, or we can fight.

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases, as well as other types of chronic pain.

March 27, 2015

A Pained Life: Depression is Allowed

March 27, 2015/ Pat Anson

By Carol Levy, Columnist

"You're depressed."

Friends say it. Family may say it. Sometimes doctors say it.

Well, duh. We live with pain for much of the day or all day long. It is hard not to be depressed!

Our lives have been changed in ways we never could have imagined. Pain is the boundary by which we live. Can I do this, go there, be with people, or work?

Pain is often the arbiter. I want to do something, but the pain tells me I can't.

How depressing. How sad.

Does that then mean we are psychiatrically ill? Does it mean that the pain is, as many of us have been told, "All in your head?"

I won't deny that for some patients the pain is psychosomatic or has a large psychological and emotional component. But for most of us the diagnosis is firm, the pain real and physical.

Interestingly and sadly however, MedicineNet.com and many other sources include this in their definition and description of what causes depression: “Chronic pain that does not respond to treatment.”

And yet when you click the link for "chronic pain" they do not refer to it being psychosomatic or having psychosomatic causes.

How many of us continue with treatments, procedures, and surgeries despite a lack of benefit? Does that automatically translate into psychogenic origin?

The questions arise. Did depression cause my pain? Would my illness not have appeared if I wasn’t depressed? Is that answerable? Would an answer matter?

What I do know is that depression carries with it not only a feeling of persistent sadness, but feelings of hopelessness and helplessness.

And how can we not feel hopeless, and helpless, when at one time or another most of us hear these kinds of statements from our doctors:

"There is no cure. You’ll have to learn to live with it.”

“I don't have an answer for why you have the pain you do.”

“There is nothing left to try.”

I remember being upset the first time I was prescribed an antidepressant. My doctor had to reassure me, "No, Carol. These drugs can work on the pain. I am not giving it to you because I doubt your pain is real."

Whether we have depression arising from pain or depression causing our pain to appear, it is worth trying to deal with it, through counseling and maybe medication too.

I often hear people with chronic pain ask if their shortness of breath, weakness, insomnia, etc. could be related to the fibromyalgia, back pain, neuropathy or whatever condition they suffer from. It is easy to think that all our physical changes and complaints come from our diagnosed illnesses. It is harder to see past what we know we have.

I think the same is true for depression. Even if we get relief from pain, the depression may still be there.

It is incumbent on doctors -- and us -- to accept that a psychological issue and diagnosis may exist separate and distinct from our chronic pain.

It is important that our psychological state be seen as equally important, worthy, and possibly separate from our chronic pain. And we need to allow ourselves the acceptance of a dual diagnosis, even if it is a psychological one.

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.

March 25, 2015

Accepting Chronic Pain: Is it Necessary?

March 25, 2015/ Pat Anson

By Jennifer Martin, Columnist

A patient of mine told me the other day, “I don’t think I will ever be able to accept my chronic pain. It has completely changed my life.”

I think this is something that most people with chronic pain contend with at some point in time; wanting to hold onto hope that their diagnosis isn’t chronic or not wanting to come to the realization that they will have to live with the pain forever.

When most people hear the word “acceptance” they equate it with the notion that they should feel that it’s okay or it’s alright to have a chronic condition. Many people don’t ever feel okay about having to live with pain or an illness for the rest of their lives. It is not something that is easy to get used to and it’s not fair.

Accepting chronic pain does not mean giving into it and it doesn’t mean that you stop looking for treatment.
Accepting chronic pain does not mean accepting a lifetime of suffering.
Accepting chronic pain does not mean you are never allowed to feel angry or sad.
Accepting chronic pain does not mean that you have to give up hope for the future.

When I use the word “acceptance,” I mean accepting the reality of your situation and recognizing that this new reality could be permanent. Those of us with chronic conditions may never like this reality and it may never be okay, but eventually it is necessary to accept it and learn to live life with it. It is the new norm with which we must learn to live.

Acceptance also involves making adaptations and alterations to our lives. We must find new things that bring us joy and we must have hope for the future.

Accepting chronic pain means learning to live again.
Accepting chronic pain means advocating for ourselves and our health so that we can be as healthy as possible.
Accepting chronic pain means learning our limits and learning to cope with feelings of guilt when we have to say “no.”
Accepting chronic pain means being able to look at your diagnosis as something you have, not who you are. Your condition does not define you.
Accepting chronic pain means re-evaluating your role as a husband/wife, mother/father, etc. as well as your life’s goals -- and figuring out how you can maintain these roles and attain your goals with your chronic condition.

For many of us, learning to accept our chronic condition isn’t easy. It is a learning process with a lot of ups and downs. It is something we may resist and something we may think impossible. It is difficult to accept something that has completely changed our lives and possibly the direction we thought our life was going to take.

Why is it necessary to accept your chronic condition?

Once you are diagnosed with a chronic condition, it will be always be with you. The sooner you are able to begin the process of acceptance, the sooner you will be able to learn exactly how to live with it. It is also how you will learn to cope.

Accepting chronic pain means learning to live life in a different way than before your diagnosis. It means learning to pace your activities, educating yourself, taking your medications, advocating for yourself, and surrounding yourself with support. It also means accepting that some aspects of your condition are out of your control.

Chronic pain can be unpredictable. There may be days when you feel in control of your pain and you are able to accomplish everything you would like to. There may also be days when your pain is unbearable, you feel angry about your situation, and all you can do is rest. Accepting your chronic pain means adjusting and adapting to the ways in which your life is different now that you may be living with this kind of unpredictability.

Your life may never go back to what it was prior to your chronic pain. But that doesn’t mean you can’t live a happy, successful, hopeful life with pain. Learning to accept your chronic pain can help you get there.

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness.

March 23, 2015

My Life with Arachnoiditis

March 23, 2015/ Pat Anson

By Tom Bresnahan, Guest Columnist

Let me tell you briefly about my past before I describe the hell I live with every day.

Before moving to Florida in 2000, I owned and operated a 6 store Domino's Pizza franchise in Tacoma, Washington. I served as an elected fire commissioner, belonged to two search and rescue groups, and was trained and certified as a swift water rescue technician. As you can see, I'm no couch potato.

After selling my business and moving to Florida I decided to pursue a career in healthcare, something I had wanted to do for many years. I went back to school and received a degree in Radiological Technology.

While attending school I fell off of a roof, damaged my back, and required surgery. In 2003, I had a triple fusion of my lumbar region performed by a local orthopedic surgeon. Everything went well and I went on to work as cardiac catheter technician, a fast paced, adrenaline junkie’s dream job! I took a lot of calls and enjoyed the challenge of working with a team trying to save the life of someone having a heart attack.

In 2009, I started to have sciatica pain in my right leg. It was interfering with my work, so I went back to the doctor who had performed my surgery. He suggested a series of epidural steroid injections. He said they were extremely safe and could eliminate my pain.

When I arrived for my first injection, I reminded the nurse to tell the doctor of the “outpouching” I had on my spinal cord. This is known as a pseudomeningoceale. It was caused when the doctor doing my first back surgery performed a laminectomy and didn't take the right steps to keep the pouch from forming. When I discovered this on an MRI and asked him about it, I was told that it was completely normal and that I shouldn't be concerned.

The image on the right shows the pouch as a white mass on my spine.

The first steroid injection had no effect, so a few months later I went in for a second. Again I reminded the nurse about the outpouching. This message was never shared with the doctor, although he should have looked at my chart prior to the procedure. The injection was given and within hours my pain became elevated. I called the doctor and was told this is normal and not to be concerned.

Over the next several days my pain increased, and it was difficult to concentrate and perform my job. I was seen again by the doctor and he scheduled a discogram, a test is to see if a disk is ruptured or torn. It is a very painful test. The results came back stating I had a torn disk above the level of my first surgery. The doctor said I would need another fusion.

I went in for surgery on September 8, 2009. By then the pain was quite bad and I was looking for anything to give me some relief. After I was partially sedated the doctor came in and told my wife that this surgery would most likely not help with my pain. I was nearly out and she didn't know what to do, so in I went for what would be a totally unnecessary procedure.

As the pain medication from surgery wore off, the pain was so bad it made me scream out loud. This went on for months! My wife took me to the ER and back to the doctor’s office, where I was told, “We don't know what’s wrong."

I couldn't work and after being out for 90 days I was terminated. I was devastated that I was losing a job I loved and spending every moment in horrific pain. I finally went to see a neurosurgeon who ordered a myelogram, an image of my spine that was performed at the hospital where I had worked.

The neurosuregon, who I had worked with on several occasions, did the test. Afterward he came into the recovery room and said, "Tom, you're screwed!"

I laughed thinking he was joking.

“You have a condition known as Adhesive Arachnoiditis,” the doctor told me. “You're going to be in pain the rest of your life!"

I was shocked and couldn't believe this was happening. He told me the nerves within my spine were all clumped together. He said over time scar tissue would form and probably make the pain worse and cause things like bladder and bowel dysfunction. And there was no cure.

The test was done and I learned my fate on Dec 31, 2009. Happy New Year!

Over the next few months I went through many medications, trying to get the pain under control. The drugs did very little to help. I also ordered copies of the dictations from all of the procedures I had done by my surgeon. On the dictation done for my last injection the surgeon stated, "I did get withdrawal so I repositioned the needle and did 4 injections.”

The "withdrawal" was spinal fluid. He had punctured my spinal cord, yet continued to inject the steroid Depo-Medrol into my spine. When I confronted him at what was to be my last appointment, he told me, "You would have a hard time proving it!"

Since that time I've been through the 5 stages of grief, with anger being the hardest to overcome. I was determined to find a fix, but eventually realized there was none.

I came close to ending my life on two occasions. My wife of 3 years told me, "I didn't sign up for this!" We divorced shortly after that.

I have spent the last 2 years trying to effect a change and educating people on the dangers of epidural steroid injections. I have tried to help others with Arachnoiditis find medications, support and the faith to continue on each day.

I have a phrase that I tell those who feel the desire to end their pain and their life, "As long as we are breathing there is hope!"

The pain has gotten worse over the last 2 years. I have had episodes of not being able to move my legs when I wake up in the morning. This alone will scare a person terribly! My legs go numb if I sit for more than 15 minutes. The pain now extends into my arms and hands.

Because this condition affects the nervous system I have developed an internal thermostat problem. I will feel cold and actually shiver in a room that is 76 degrees. At other times I will break into a sweat that's so bad I'm drenched within a few minutes, to the point that I have to change shirts. I can't tell you how many times I've lain in bed screaming because the pain is so bad.

I have never in my life been one to take it easy, yet I've had people actually tell me, "It couldn't be that bad!"

This is demoralizing, frustrating and depressing. Steroid injections are a band aid at best and the destroyer of life at worst. Please help us put a stop to these injections that are causing so many to suffer so much!

I want to thank you for taking the time to read my story. I pray every night that if we can stop anyone else from ending up with this hellish pain then I will feel that I have made a difference.

Tom Bresnahan lives in Florida. He is a patient advocate and activist with the Arachnoiditis Society for Awareness and Prevention.

Pain News Network invites other readers to share their stories with us.

Send them to: editor@PainNewsNetwork.org.

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