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.

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.

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.

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.

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. 

A Pained Life: Does Child Abuse Cause Chronic Pain?

By Carol Levy, Columnist

The idea of childhood trauma or abuse leading to chronic pain in adulthood has always bothered me.

The idea that trauma/abuse can change the neural system sounds intriguing, but has yet to be proven. The studies I have seen do not prove a connection, only a link.

I was abused as a child.  I have almost no memory of my childhood, but I fit the profile. Two siblings also circumstantially validated it.

My trigeminal neuralgia is a symptom of a neurovascular birth defect that I was unaware of until the pain was diagnosed. My pain started as typical trigeminal neuralgia; out of the blue a horrendous, excruciating, world bending pain. It lasted only a few seconds then disappeared.

I have a birthmark in the exact area of the pain which anatomically corresponds to the pained area and trigeminal nerve distribution in the face. It's presence, as well as the fact that it is 'vascularized' (can change color), is a sign of the birth defect.

Growing up my sister would sometimes say, “You're upset.” I’d deny it and she'd smile knowingly, “Yes you are. Your birthmark's out.”

I am lucky in that this birth defect often comes with other terrible consequences; paralysis, blindness, intellectual deficit, and psychiatric disorders. That may be the only time the words “luck” and “trigeminal neuralgia” have gone hand in hand. I could have had some or all of those awful things. Instead it was only trigeminal neuralgia.

My signs and symptoms of abuse are many, among them that I do not like to be touched unexpectedly. I often flinch when it happens. Trigeminal neuralgia can be triggered when something touches the pained area, even something as benign as the slight wisp of a strand of hair.

Circumstantially, one could put those two together; I don't like to be touched and I developed disorder that makes touch horrendously painful.

The negative to that is twofold. I did not know I had the defect, and trigeminal neuralgia in my case has very specific neurosurgical attributes. Although the cause has been theorized, no one is completely sure of what causes trigeminal neuralgiait. In my case though, there is no doubt: dozens and dozens of tiny vessels throughout the affected side of my brain.

I moved to New York City six months before the pain started. I shared a two- room apartment with someone I knew slightly. We never developed chemistry and one day I came home to find a note on the table saying, “I'm going back to Washington.”

I now had the unexpected responsibility of full rent, which I could barely afford. To top it off, I had just been fired. I hated my job but was not aware my employer also knew it until 3 days before Christmas, when he said, without preamble, “You're fired.”

Not surprisingly, I became very depressed. Now, did the depression change my neurochemistry so that the birth defect suddenly became active? I can see that as a possibility. Is there a way to prove it? None of which I am aware.

I think it is too easy to make a connection between two disconnected things, like chronic pain and childhood trauma/abuse, and turn it into an explanation.

Many articles and studies conclude that there is a high prevalence of childhood abuse among those with chronic pain. Often the studies rely on self-reporting, so there is also a question of reliability and constancy as to what constitutes abuse. Too often the authors go on to postulate that there is a connection.

But the presence of one does not mean it causes the other.

Without true studies, such as MRI imaging or other forms of measurement, to compare and contrast the brains of those with chronic pain and childhood abuse histories to those who have chronic pain but suffered no abuse -- we are left with a theory in search of a proof.

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.

Pain Companion: Breathing Exercises for Chronic Pain

By Sarah Anne Shockley, Guest Columnist

Can your breathing patterns actually affect your pain levels?

Over several years, and born from the desperation of having no effective pain remedies, I discovered some simple breath exercises which helped decrease my acute pain levels and increase my overall well being.

In the fall of 2007, I contracted a particularly severe case of Thoracic Outlet Syndrome (TOS). Briefly stated, the area between my collarbones and first ribs collapsed, squeezing the nerve ganglia, muscles, arteries, and veins that have to fit through an already narrow breathing space.

This caused a myriad of symptoms, including burning, aching, shooting pains, and tingling in my hands and neck, and a reduction of mobility and function in my neck, arms and hands.

Over the next several years, I tried various forms of physical therapy and a number of pain medications, none of which improved my TOS and most of which exacerbated the squeeze in the thoracic area, inflamed the nerves, and swelled the tissues even more, causing more pain.

Finally, I was pronounced permanently disabled and left to my own devices.

The only thing I'd found that helped keep my pain levels stable in all that time was walking. So, walking slowly for about 20-30 minutes a day and staying as quiet and calm as I could became the sum total of my pain management protocol.

After several years of stoically putting one foot in front of the other, both figuratively and literally, I thought, there has got to be something else I can do here.

I meditated before my injury and knew that calm meditation was often good for reducing stress as well as increasing overall health, so I thought it might help my nerve pain. It certainly couldn't hurt.

Except that it did.

The meditation forms I was familiar with called for sitting with an erect spine and breathing deeply and evenly.

Unfortunately, sitting in any one position for more than a few minutes increased my pain. Trying to keep my spine straight increased my pain. Breathing deeply increased my pain.

So much for meditation. Every so often, I would try again to see if anything had changed, but got the same results.

Yet something good did come out of it. In the process of trying, I began to pay attention to my breathing, at least for a few moments. Eventually, I noticed something startling.

Every time I began my brief little excursions into meditation, I noticed that I was holding or restricting my breath, as if I was afraid to breathe at all.

So I began watching my breathing patterns and putting my attention on my breath at various times during the day, whenever I thought of it.  I didn’t do anything else at first, I just paid attention.

What I noticed was that I was taking very shallow breaths and then stopping my breath in between them. I don't mean that I was filling my lungs with air and holding my breath. I mean I was barely breathing. Since breathing deeply increased my pain, I was unconsciously trying not to breathe.

This is understandable, and maybe it's something that you do too. If you check in with your breath right now, are you inhibiting its flow in order to try not to feel pain? Just notice that.

The problem with holding back the flow of breath is that it blocked the natural flow of oxygen in the body, and made the body tenser. I realized that I might be inhibiting the body's natural healing process by inhibiting the breath.

So, I started some experiments.  The first thing I did was notice my breath at different times during the day.  Then, I started consciously taking an easy breath and releasing it a few times calmly and freely. I didn't try to breathe deeply since that increased my pain, I just simply released my breath to flow more naturally.

The second thing I did was stop using my breath to push against pain. That meant I had to let pain be where it was without as much resistance from me. It was as if, by withholding breath from the pain - trying not to breathe in the painful area - I could force it to leave, or die, or I wouldn't have to feel it.

The third thing I did was to begin to breathe with the pain. In a sense, I included pain in my breath, rather than trying to stop it by not breathing in the painful area. I first imagined breathing around the pain, and then I imagined breathing through the pain, and then I imagined breathing with the pain, as if pain were breathing with me at the same time.

In short, I allowed pain to have breath.

This seems counterintuitive to most of us. We want to stop our pain, so we stop the flow of our breath. But it doesn't seem to work that well. Pain is already part of our experience, so resisting it doesn’t usually bring good results and it creates more stress and tension in the body.

Accepting pain for what it is and breathing with it helped me create a great deal more relaxation in the body, and thereby began to relieve the acute levels of pain I was in.

It seems like a paradox, but I found that giving pain permission to be where it was, so to speak, and allowing it breath, actually helped it to begin to move on.  I also noticed increased energy in my body overall, and I felt better emotionally.

After having worked with breath for several years now, I can say that, for me, these little breath awareness exercises have made a great deal of difference in my pain levels and overall well-being.

Sarah Anne Shockley is the author of The Pain Companion: Practical Tools for Living With and Moving Beyond Chronic Pain.

Sarah also writes for her blog, The Pain Companion.

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.

Pain Patients Ignored in Reaction to Super Bowl Ad

By Nicole Hemmenway, Guest Columnist

While the issue of pain medication and addiction has been a hot topic in the media and government for quite some time, a TV commercial shown during the Super Bowl seemed to add more fuel to the fire. 

Initially, I thought these conversations would be beneficial to those of us – like myself – who deal with pain. I believed that in 2016 we had come a far way from judging people with disabilities, and that the patient voice would finally be heard for positive, proactive, and bipartisan change to occur.

I was wrong. Sadly, the focus has not been on the patient. Instead, media coverage (and a White House press conference) has chosen to only address the high rate of opioid overdose.

There is scrutiny from the public, those running our nation and the media that such an ad, designed by multiple patient advocacy groups to raise awareness about a serious issue (opioid induced constipation), is seen as a way to further stem the opioid epidemic. The ad became an excuse for politicians and high-profile individuals to push an agenda that only stigmatizes the pain patient more.  To my dismay, the patient voice wasn’t only lost in the rhetoric, it was obsolete.

I am angry. Very angry. We have two very serious problems happening in America right now: addiction and the pandemic of pain. In 2011, the Institute of Medicine reported that over 100 million Americans live with some type of pain brought on from a chronic condition, illness or injury. This is a staggering number that will only grow higher, and not enough is being done to help these Americans.

NICOLE HEMMENWAY

My issue is that it appears most people only want to state how terrible pain medications are, and how they are the reason we have such a high addiction and overdose rate. The only discussion to “fix” the crisis is to limit access to treatment. Repeatedly, I hear the answer is to deny legitimate people living with pain access to the treatments their providers deem beneficial for them. That is not a solution. This doesn’t solve or even curtail the problem. In my mind, I see it as a cop-out; a loosely fit Band-Aid if you will.

Let me be clear. I am not pro-drugs. In fact, the high doses of medications I was prescribed nearly took my life a decade ago. Thankfully, I was able to try countless treatment options and found my answer in a non-invasive electrical stimulation device, as well as diet change, light therapy, acupuncture, upper cervical care and exercise. 

I live in the San Francisco Bay area. Because of where I reside, I have access to every possible complementary therapy. I can try active release technique, reiki, healing touch and hot mineral springs. There are wonderful interdisciplinary programs nearby. Anything that may help me move past my pain is available. Yet the downside is that nearly none of these treatments are covered by insurance.

So while I have access to them – unlike rural areas, where finding a complementary practitioner is impossible – I also have to pay out-of-pocket. And they are not cheap!

The cost of my health insurance – like millions of others who need it – is obscene. For my family, our monthly premium is $827.34 (my husband’s employer contributes an additional $225). Our deductible is $9,000, with an out-of-pocket max of $13,000 for the year. This is the reality for most Americans. With that, how is it feasible for Americans living with pain to afford additional treatments? It is not.

The actual problem is not being addressed, and I would love to be given the opportunity to talk with White House Chief of Staff Denis McDonough, Senator Ron Wyden or Dr. Andrew Kolodny about the real issue. I believe most people taking pain medications want to lower their dose or even not need them. But there has to be other treatment options in place to help control the pain. What are we offering now? Nothing, really. 

That is the problem, and this is where I hoped the discussion surrounding the Super Bowl, pain care in America and addiction would have went this past week. Unfortunately, it did not. As a society, we keep missing opportunities to really advance the issue of healthcare and pain care. There is a serious pandemic called chronic pain that is widely misunderstood and inadequately treated.

Right now, the public persona sees those with pain as “junkies” (thanks Bill Maher for adding to the misperception). I take huge offense to that. We are not junkies or addicts. We are people following legitimate treatments our providers believe will help us. And even with that, many cannot receive the medications or care they need and deserve.

This, in my mind, is injustice. It is time to stop shaming a quarter of our population for having pain. They are just trying to find answers so they can return to a better quality of life.

So I leave you all with these questions to ask yourselves. When will the voices of those with pain be considered a priority to America? How can we make sure those with pain have access to ALL forms of care? What can we do to begin working together so we find a balanced approach to pain management?

There will be a solution, as soon as we start asking the right questions.  To start, America needs to care for those of us with invisible illnesses. Our voices must be part of the discussion, which sadly, they have not been. Let us do our part to change this now.

Nicole Hemmenway is vice-president of U.S. Pain Foundation, a non-profit patient advocacy group. Nicole is also the author of No, It Is NOT In My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon.

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.

Our Search for a New Pain Doctor

By Marlee Hanson, Guest Columnist

I am 31, and my husband Ray is 34.  Ray is disabled.  His biggest daily struggle is chronic pain from  a serious back injury. Adding to our troubles is that we live in Montana, a state where there is an acute shortage of doctors willing to treat chronic pain with pain medication.
 
Ray has undergone multiple surgeries to fuse his spine.  We went into these surgeries knowing he would lose some range of motion, but hopeful that they would lessen his pain, allowing Ray to be the husband and father he desperately wants to be.  Sadly, the surgeries were difficult, the recoveries were long, and his pain has only worsened postoperatively.  The disappointment has been crushing.
 
Interventional pain procedures have sadly failed to help my husband as well.  He has endured diagnostic CT myelograms and developed post-procedure cerebrospinal fluid (CSF) leaks.  One was severe enough to require an epidural blood patch.  A CSF leak causes vomiting and a severe headache commonly known as a spinal headache.  These are not only painful, but can lead to meningitis.  The primary treatment is bed-rest.  When this fails, an epidural blood patch is performed.  Though it relieves the headache in most cases, it puts the patient at further risk of developing meningitis.

On many days my husband is not able to move, get out of bed, prepare food, or even take a simple shower because the pain is so severe.  Thankfully, Ray has found relief through opioids. Oxycodone allows him to function so he can be a husband and father.  It gives him enough relief that he is able to stretch and do physical therapy exercises. 

Exercise has also allowed him to rebuild muscle, improve stamina and helped decrease his pain.  None of this would be possible without the pain relief opioids provide him. Unfortunately, we fear my husband is weeks away from losing access to the one medication that truly gives him relief, as his physician’s license has been suspended.

Once we knew this was a possibility, Ray and I began seeking a new doctor to treat him. I believe my husband is a low risk patient.  He takes his medication as prescribed, does not abuse it, and has never been discharged by a doctor for misusing his medication. He has never overdosed. 

ray and marlee hanson

So far we have scheduled appointments with two doctors. The first one neither examined my husband nor reviewed the X-Rays and MRI’s we brought to the appointment. This physician made his treatment decision based on the prescription monitoring database and gave my disabled husband a prescription for one quarter of what he usually takes in a month, along with a pamphlet on vocational rehabilitation. 

We told the doctor Ray had already consulted vocational rehabilitation when it was suggested by his workers compensation caseworker.  We explained to the doctor how much opioids have reduced his pain and improved his ability to function.  The doctor said it was simply not worth the risk of his license being suspended.

Years ago, workers’ compensation and Social Security deemed that Ray was disabled, based on input from several physicians.  We felt this new doctor was not listening, and we were disappointed when he refused to provide the chronic pain management my husband needs. 
 
We were still hopeful that the second doctor, who was recommended by a friend, would assume responsibility for his care.  Ray waited five months for this appointment.  The day before the appointment, the doctor's office called to cancel, stating she would not see Ray for pain management. She also refused to fill his prescription.  He has taken these medications with good functional benefit for the past eight years.

We used to travel to Missoula for chronic pain management.  The trip was inconvenient and the long drive exacerbated his pain.  Eventually we were fortunate enough to find a physician in Helena near our home.  Unfortunately, we will now be forced to travel for appointments once again and deal with all that this entails.  Our next appointment will be in Great Falls.  If Ray does not receive care there, not only will we be forced to travel out of state, but my husband will also have exhausted his supply of medication. 

Ray is a law abiding citizen with a chronic pain condition that needs to be addressed.  Finding care is nearly impossible in the current regulatory climate.  I fear deeply that one day he will escape his pain by suicide.  Ray is not suicidal at all, but I fear if he is forced to go without medication, he will become bound to bed in pain, and I fear that suicide will be the outcome.

The government is looking at opioid pain relievers as harmful substances.  When these medications are illicitly used and abused there is a problem.  That problem does need to be addressed.  However, as harmful as those medications have been for some, they are just as helpful for others.  We do not need laws restricting or banning opioids; we need a nationwide effort to ease the suffering of those who are in pain.  We need doctors and practitioners who are trained in proper use & dosage of pain medication, as well as alternative pain treatment. 

Physicians need to look at chronic pain patients as individuals, just as they do with other patients.  Each condition varies in severity and everyone metabolizes drugs differently.  Please allow doctors to prescribe the medications Ray needs to survive so can be the husband and father he wants to be.  His children and I deserve that, as does he. 

Marlee and Ray Hanson live in Montana.

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.

What to do Before Seeing a Doctor

By Barby Ingle, Columnist

When I first started having chronic pain issues, I would go into the doctor’s office and expect them to fix me. But we were talking two different languages and I was getting nowhere fast.

Learning to communicate with your doctors is important in your treatment plan. To do this most effectively, it is important to prepare. Improving your communication skills will lead to better treatment and pain relief.

Before seeing a doctor, try to put your thoughts in order so that you can accurately describe what you are experiencing. On days like the past few weeks, when I am in a full body flare and my pain is very high, my brain starts to mess up my words and even normal conversations become difficult.

Times like these made me realize that I had to get organized and prepare a checklist for my doctor visits. It’s part of becoming your own best advocate.

You can start by answering questions, such as “What did I do since I last saw this doctor?” Review past treatments and ask yourself, “Are they working and what makes the pain better or worse?”

It is good to keep a journal of your activities and pain levels so that you can reflect on these questions. Keeping a journal helps me organize my thoughts and answer these questions more precisely and accurately.

When you keep track of your pain, you gain a better understanding of what causes it, and what activities help or hurt. Prepare a personal history, be brief, and stick to the needed information on your checklist. If there are any concerns about your medications or if you would like to try a different medication you have researched, be able to explain why to your doctor.

Another important step is getting your emotions under control. I have found that if you go into the office showing frustration, anger, anxiety or other negatively perceived emotions, the doctor will be less likely to provide you with useful tools. Providers will focus on your mental status first.

I experienced this phenomenon a lot in the beginning of my search for proper treatment and diagnosis. So many doctors said, “Do you want to get better?” or “It is all in your head, so I can’t help you.” One physician even told me, “Try a different doctor. I am stumped and these symptoms don’t make sense.”

Letting your emotions get the best of you at the doctor’s office will create trouble. If you prepare ahead of time, you may still have these emotions, but you will be better able to keep them under control. You will also have a more productive doctor visit by staying on track and progressing forward with a treatment plan.

Go into the appointment having evaluated yourself and your symptoms. Keep yourself in check, stay calm and positive, and assist the doctor with finding the answers so that the outcome will be more beneficial for you.

Every provider is not the same. One of the most important decisions confronting patients who have been diagnosed with a serious medical condition is choosing a qualified physician who will deliver a high level and quality of medical care. Finding the "best" doctor to manage your condition, however, can be frustrating and time-consuming unless you know what you are looking for and how to go about finding it.

In the beginning of my ordeal, I followed what the doctors told me to the letter, even when I had doubts about their recommendations. My focus was on getting better and I was brought up to believe that doctors knew better and had all the answers. It took me almost three years after my accident to realize that this was a complete myth. Healthcare providers are human too, and they can make mistakes.

When preparing to see a provider it’s important to know your needs so you can be assertive and ready to listen to their instructions while in their office. Try to find a close friend or family member who can attend with you or record the exam on your smartphone so you can refer back to it between appointments.

The day before or on the morning of an appointment, write your questions out. I create a one page checklist that includes my medications/dosages, what I need a refill on, current issues, ongoing issues, past procedures, and questions. I use this checklist to guide my appointment so I cover everything important. I put my thoughts in order so that I get the best care possible.

Another time this comes in handy is in an emergency situation. About a month ago, I had to head to the emergency room after breaking my foot. I was simply walking in my house and walked into a wheel of a suitcase. My bones are fragile and I knew instantly from the sound and the pain that my foot was broken. I grabbed a copy of my latest checklist and headed out the door.

When the nurse came in to take my history and vitals, the pain was overwhelming, but my checklist answered most of her questions. I didn’t have to concentrate on making sure she got the right information, as my brain was clouded with severe pain at the time. That helped her help me. Being prepared is an essential element for proper diagnosis and treatment.

In my next column, I’ll have some tips on what to do during the actual visit to a doctor.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

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

The Top 5 Questions Pain Patients Want Answered

By Pat Akerberg, Columnist

I’m sure you recognize them, the questions that invade your mind and take you down rabbit holes digging for real answers.  With our worlds turned upside down by chronic pain and/or illness, we want the kind of answers that make sense of our new reality.  We’re convinced finding those answers will somehow turn us right side up again.

So we ask various versions of why, how, what, where, and who questions.

Perhaps the question that haunts the most is the slippery “Why?” question.  It’s not long after you have a name for the source of your suffering that you ask, “Why me? Why did this happen to me?”  That question makes it very personal, like we were victims purposely targeted. 

It’s as if we believed that we were somehow immune, operating in a protective bubble that shielded us from all potential harm.  And when that bubble burst, an unexpected, unthinkable, and undeserved betrayal was visited upon us.

Why questions are slippery because they hold us captive in the lore that there is an answer that can be known with absolute certainty.  And they presume that having such an answer in hand would create a better outcome or even change it.   More often than not, why questions simply frustrate because most speculations masquerading as answers feel inadequate, unsatisfactory, and leave us wanting something more definitive.

One day I asked myself exactly who was I expecting to give me the answer to my “Why me?” question.  Was there anyone who could tell me with reliable authority whether it was my genetics that set me up for trigeminal neuralgia? Or was it my severe auto accident, a blood vessel pressing on my trigeminal nerve, the hefty amount of stress in my life, or a combination of all of those factors? 

The realization finally dawned that I wasn’t going to get the actual answer to “Why me?”

So with the biggest question unanswered, I moved on to the next questions.

If not why, then how did this happen to me?  How questions beg for specific factors that explain how the chronic illness came about, how the horrible pain started.

Sometimes I still ask myself how it is that I didn’t see or feel this coming, as if I could have.

Without one clear precipitating event, how questions have a tendency to defy real answers too, so they begin to give way to the more practical inquiries.  Once I crossed over into the “what” questions, being more proactive became possible. 

What questions identify potential actions that we can consider taking.  I started by asking, “What now?”  What options do I have?  What kind of specialist do I need to see?  What medications and/or treatments have the best track record?  What kinds of risks might be involved?  I searched for what I could read to help me learn and understand more about my condition.

Each of those what questions laid out paths to pursue for my neurological disorder and I went down all of them.  Some worked better than others and some failed me completely, but that wasn’t from lack of trying.

The what questions that aren’t very helpful are the “What if?” ones.  That’s because in my experience they tend to dredge up fears of worst-case scenarios or self recrimination.  Asking yourself “What if I had only (fill in the blank)” is an example of punishing self doubt for impossible to forecast outcomes.

Certain answers to what questions will automatically cause us to ask “where” questions.  Where questions are those that attempt to pinpoint a location or direction for us to investigate. 

For instance, if there’s a specific treatment or surgery, where are the best medical centers for those?  Or, if medication or treatment didn’t work, it’s time to tale stock and ask “Where do I go from here?”  Sometimes we can benefit by asking where to find support groups (in person or online) to connect with people dealing with the same issue.

When at an impasse, we find ourselves stepping back to process all we’ve been through by asking ourselves where we fit now or where our situation is taking us.

It seems that where questions naturally fold into questions that ask about who.  Who questions have a direct purpose; they are asked to locate an expert with a solid track record that might offer help.    

We ask others with successful outcomes who they were treated by or who operated on them.  We wonder who we will relate to the most when we join a support group or who might offer the best help or resources for assistance.  

Over time, I even came to wonder who among my dwindling friends would stay with me for the long haul. 

However, the most important who question that I continue to ponder now is, “Who am I now that this progressive, painful disorder took over my life?”

I would say that the jury is still out on that answer.  But I’m working on it, as I’m sure many of you are too.  And it’s not surprising that sorting out answers to an internal core question like that would involve asking ourselves those same five questions in search of meaningful answers we can accept:

1)  Why would I think I was immune from harm?

2)  What have I learned that I wouldn’t have otherwise?

3)  Who do I want to be in response to this life change?

4)  Where are these important insights taking me now?

5)  How do I choose to reframe this experience and my purpose?

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.