Abuse Deterrent Pain Medications Deserve Support

Barby Ingle, Columnist

It's no secret that the abuse of pain medication and illegal opioids has led to a growing public health problem across the country. The numbers are alarming and they are growing.

Also alarming is the number of people who suffer with chronic pain. According to the Institute of Medicine, one in three Americans – about 100 million people – have been affected with a condition that causes pain.

Since 2002, I have been battling Reflex Sympathetic Dystrophy (RSD), a progressive neuro-autoimmune condition that affects multiple systems in the body. The worst symptom for me is the constant burning fire pain. It feels like someone put lighter fluid in me, lit it, and I can’t put the fire out. I know firsthand how difficult the journey for pain relief can be, particularly the sidelong glances and disbelief from medical professionals.

The challenges are complex and multi-layered, and I always applaud solutions that help to balance pain management with the cost that prescription drug abuse has on society. Promising technological advancements in recent years are proving to be an important part of the battle.

Among these are so-called "abuse deterrent formulas" (ADFs) of commonly prescribed opioid pain medications that are being developed to prevent some of the deadliest forms of opioid abuse. The formulas generally make it harder to crush or liquefy pills for snorting or injecting.

These tamper deterring formulas of pain medications provide patients with the same pain relief as conventional opioids, but incorporate breakthrough technology designed to protect against tampering and abuse.

Since Purdue Pharma introduced a reformulated abuse deterrent version of OxyContin (oxycodone ER) in 2010, the “nonmedical” or recreational use of OxyContin has fallen dramatically.  

source: radars system

Several states are considering legislation in 2017 to improve patient access to these new abuse deterrent formulas of painkillers. As bills are introduced and updated, the International Pain Foundation and other pain organizations track them on our websites, put out action alerts and ask for the pain patient community to get involved by sharing their stories.

ADFs have received widespread support as part of a comprehensive effort to combat prescription drug abuse and promote appropriate pain management, including from the Office of National Drug Control Policy, the Community Anti-Drug Coalitions of America, members of Congress, and the National Association of Attorneys General — including California Attorney General Kamala Harris, who was recently elected to the U.S. Senate.

Abuse of pain medications has led to a growing public health problem nationwide. Each year approximately 4.5 million Americans use prescription pain medications for non-medical purposes, contributing to more than 14,000 overdose deaths annually.

To date, the Food and Drug Administration has approved abuse-deterrent labeling for seven drugs (OxyContin, Targiniq, Embeda, Hysingla, Morphabond, Xtampaza, and Troxyca), with two other abuse-deterrent opioids under review.

This technology is only part of the solution, but it is a solution nonetheless. Patients that have struggled with addiction or substance abuse in the past, those who live with others who are current or recovering addicts, and those who live with teens or young adults who may seek opioids for recreational use can all benefit from ADFs.

For the sake of those with legitimate, life-altering pain and for the safety of those prone to abuse these medications, I urge our lawmakers to stand up for policies that preserve and improve patient access to ADF technology.

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.

Don’t Let Them Stop the Stem Cell Movement

By A. Rahman Ford, Columnist

Somewhat lost in Donald Trump’s presidential victory was the resounding statement made by voters that medical marijuana is here to stay.  Those people-driven victories were monumental for millions suffering from painful and debilitating illnesses -- people who could achieve a life-saving benefit from marijuana or its derivatives. 

It’s only a matter of time before the DEA changes its ridiculous classification of marijuana as a Schedule I controlled substance. 

I believe that one of the next challenges in the wellness movement is the FDA’s control over your own stem cells, or as I call them, personal stem cells.  Quite frankly, the DEA’s position on marijuana is about as misplaced as the FDA’s position on you using the cells God gave you to heal yourself. 

Some scientists have been pushing quite a bit of manufactured controversy around the issue.  Those same scientists tried the same thing with marijuana.  But now the people know the truth.

Personal stem cells are simple to understand.  I’m not talking about embryos, umbilical cords or artificial cells grown by some scientist in a lab.  When I talk about personal stem cells, I’m talking about master cells cultivated from your own bone marrow or fat. 

Yes, you have stem cells in your own body that can heal you.  

In marijuana terms, it’s like you’re your own stem cell “grow house.”  Your own cells can be used to heal any number of physical ailments, including orthopedic issues.  Orthopedists have been using the procedure for years, and there is also evidence that stem cells can be used to heal autoimmune diseases. 

Like marijuana, we really have no idea how many ailments can be improved or even cured with personal stem cells.

If you’re wondering whether personal stem cells can actually heal, look no further than professional sports.  Recently, Bartolo Colon, currently the oldest major league baseball player at 43 years of age, signed a $12.5 million pitching contract with the Atlanta Braves.  How in the world is he able to be so productive at an age where most players are long retired?  You guessed it – his own stem cells.

What about NFL Hall of Famer and two-time Super Bowl winner Peyton Manning, who literally broke his neck playing the game he loved?  Yes, his own stem cells.  International athletes like tennis champion Rafael Nadal have benefitted as well.  In fact, hundreds of professional athletes have healed from serious injuries by using their own stem cells. 

Personal stem cells can work.

Unfortunately, many athletes have to go overseas to use their own God-given healing potential, because the FDA doesn’t allow certain techniques to expand your really strong (mesenchymal) stem cells.  But these wealthy, well-connected athletes who earn their living by being fit -- often enduring severe injuries and pain -- know the truth.  Your own stem cells can heal you.

Just think how many wounded combat veterans could benefit from their own cells!  A 2014 University of Michigan study found that 60 percent of U.S. Army soldiers who were unable to return to a military career after an Iraq deployment couldn’t do so because of a muscle, bone or joint injury. The strongest predictors of inability to serve were fractures and chronic knee, shoulder, spine and back pain. 

But it’s not just musculoskeletal conditions.  Our troops also have crippling brain injuries from IED and other bomb blasts.  According to the Pittsburgh Tribune Review, tens of thousands of combat veterans returning from Iraq and Afghanistan with undiagnosed brain injuries “often were ‘thrown into a canyon’ – falling deeper into despair and sometimes flirting with suicide or addiction.”

It gets worse.  To cope with the pain and depression of injury, many wounded warriors turn to addictive pharmaceutical painkillers or illegal street drugs.  A 2011 American Public Health Association report found that the overdose rate for veterans on opioid painkillers was twice the national average, and that they are more likely to become addicted to heroin. 

Opioid abuse is such an epidemic that, in a recent letter to physicians, the Surgeon General called it a crisis and launched the “Turn the Tide” campaign to raise awareness about the issue. 

Fortunately, many wounded warriors have already begun turning the tide by replacing their toxic pills with medical marijuana.  Now, we owe it to our troops to help them turn the tide even further, by giving them another option – personal stem cells.

We celebrate our troops with parades and salutes on Veteran’s Day, Memorial Day and during just about every major sporting event, and justifiably so.  But maybe the best way to celebrate them is to allow them to heal themselves with their own cells so that they can once again be the parents, siblings and children we love.  Our government has a moral and ethical obligation to do so, and we the people have an ethical and moral obligation to make them do it.

Stem Cell Therapy Not FDA Approved

I want to be clear: clinical use of adult, embryonic and umbilical cord stem cells are not FDA approved, and any determination as to their safety or efficacy requires further research (although, in the interest of full disclosure, I have had umbilical cord stem cells in China and the therapy helped me greatly with no negative effects). These stem cells are properly under the domain of the FDA because they are biological agents that are taken from one person and injected into another person and intended to treat a disease. 

What I’m talking about are cells that go from YOU into YOU.  Personal stem cells are as natural as marijuana, and the federal government should acknowledge that your use of your own cells should be a transaction between you and a licensed physician, and regulated at the state level.

States like Colorado and Washington have already proven how safe and healing – not to mention lucrative – marijuana can be, despite what all of the “experts” were saying.  Your own stem cells are no different.

Right now, personal stem cells are technically legal, but the future regulatory landscape is so uncertain that few physicians offer it and few Americans can afford it.  Rather than expanding access to personal stem cells, the FDA has recently tried to restrict their use.

The proposed action by the FDA is wrong.  Unfortunately, it seems like the agency is refusing to hear the cries of persons with disabilities (like myself) and wounded warriors who come home crippled after serving abroad -- so that the children of federal agency bureaucrats can be safe here at home.

I believe marijuana legalization gives personal stem cell advocates hope.  The legalization movement succeeded despite federal intransigence because of the success of direct democracy. People voted at the state level in referendums, without elected officials operating as self-interested intermediaries. 

Given the important nature of this issue, and the apparent ineffectiveness of federal government lobbying and litigation alone, the personal stem cell movement may need to add a referendum component as well.  It may be difficult, but it can be done. 

Educate yourself, and then educate others.  Human beings are not drugs.  We need to keep it that way.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor in Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Dr. Ford is not affiliated with any stem cell treatment provider. He suffers from chronic inflammation in his digestive tract and is unable to eat solid food.

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.

I Miss the Person I Used to Be

By Deanna Singleton, Guest Columnist

I'm not the same person I was 8 years ago. It's not because I went through a tragic life experience or that I finally figured out the point of life.

It was that one day, all of a sudden, I opened my eyes in the morning and both my legs were in pain. And over the course of the last 8 years it keeps getting worse. I have advanced spinal stenosis, three bulging discs and degenerative disc disease.

It’s now to the point that at the age of 36, it takes everything I have to get in the shower or to just make a dinner for my kids and hubby. And if I actually do take a shower or do dishes, I'm usually in tears from the pain. I can't move the rest of the day from that small activity. Some days, just the water hitting or running over my skin is enough to make the average person want to die.

I want my life back. I didn't ask for this daily pain.

The first thing I think about when I open my eyes in the morning is where are my medications. I have to take pain medication just to walk through my house or to play with my children.

DEANNA SINGLETON

I used to have a very clean home. Now, not so much. Now it’s normal to walk into my home and see a mountain of clothes filling one whole couch. I loved to clean my house and make it a beautiful home for my family. I used to be out in my garden or flower beds, because that's my happy place. But I can no longer go there.

I used to be able to take my three girls on a walk to the park. Or walk the mall. Now I'm just lucky to be able to walk the grocery store, using the cart as a walker just long enough to get stuff for dinner.

Last but not least, I used to be a great wife. Smiling, happy and at the door to greet my husband after working a long hard day, with makeup and hair done. To make sure he remembers why he comes home every day. 

It's hard to feel pretty when you hurt so bad. Now I'm probably on the couch or in bed with my pajamas still on. With no makeup and hair in a messy bun. No more greetings at the door. And a smile no where to be found.

I used to be a great partner who was loving and affectionate. Who made sure my husband was happy in every way. Now it hurts so bad that we both just feel terrible afterwards.  Me because of the pain level, and him because he feels bad and that it's his fault now.

I used to work at two jobs, until I lost my pain meds due to my doctor not being comfortable any longer prescribing opioids because of the CDC guidelines and our local DEA. I was told by the doctor that he could no longer prescribe my medication.  And just like that, I went from 190 mg of oxycodone a day down to zero. No tapering.  My body then went into massive withdrawal.  I thought I was going to die. And since then I can no longer work.

In the state of Oregon we find no relief or sympathetic doctors who are willing to prescribe these life saving opiates that have been proven to give me my life back. And it's all because doctors are too scared of the CDC and the DEA to treat us patients, who rely on these meds to have any function or quality of life.

I have never wanted someone to cut into my body so bad. But no surgeon will do my surgery till I turn 40. My primary care provider will barely give me tramadol.  I've been to every specialist possible. And gone through countless medications, physical therapies and injections.

I'm just asking our medical doctors to do the job they once probably loved and not be so afraid to treat their patients as they know best. And let me be the mom and wife I used to be, and know I can be once again.

I just want my life back. For my kids, my marriage and for a somewhat active life.  I will start my life at 40.  I will probably be the happiest woman ever to return 40.

Deanna Singleton lives in Oregon with her family.  She is a proud supporter of #PatientsNotAddicts on Facebook and on Twitter.

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.

Choose the Green Door

By Barby Ingle, Columnist 

When there is a hallway full of doors and you don’t know which one contains the cure, where do you start? Which door do you choose?

I go with the green one. The one that makes the most sense to me personally. The door is a place to start finding answers and access to care. If what we need is not behind that door, remember there are other doors down each corridor of life.  

Patients all over America have been struggling to get good healthcare for chronic conditions since I can remember. These patients, along with their loved ones, healthcare providers, and millions of taxpayers, are suffering the pitfalls of a healthcare system that too often doesn’t work.  

In most chronic care situations, we are not taught self-advocacy skills. As a result, we often don’t know our rights or responsibilities as patients. 

For this terrible situation to stop, it is going to take a combined effort on the part of many people. But it starts with us becoming better informed, proactive, and organized as patients.  

Better organization, prevention programs, access to care, and learning the tools to take care of ourselves between appointments will go a long way towards ending this crisis in our society.

I talk a lot about being prepared and organized as a patient to receive the best healthcare possible (see “What to do Before Seeing a Doctor”). Starting a journal and keeping a checklist of things to talk about with your doctor will help guide you through the minefield of the healthcare system. It takes work in the beginning, but gets easier as you go. You’ll save yourself more pain and challenges in the future.

Finding the Right Fit

When it comes to living the best life you can, every person has choices. There are even more choices for those who have chronic pain or illness. It is important to find the right fit for you. Patients can either let the disease run them or sort through the system and take control of their disease.

Your first goal should be getting a correct diagnosis. If you need to go to multiple doctors, take the time to do it now to prevent your health from deteriorating further.

Each doctor has their specialty and treatment options that they are comfortable with. This does not always mean that they are the right doctor for you or that another treatment will not work. If you are not comfortable with the treatment offered by your current provider, find a doctor who you trust to try different options. 

It can be very aggravating to deal with a kidney stone or torn ligament, but at least there is an end in sight. You can get back to a “normal life” once the stone passes or the bone break heals. Other conditions such as high blood pressure, heart failure, diabetes, Lyme disease, multiple sclerosis, RSD, arthritis, osteoporosis, neuropathy and other chronic conditions can be more of a challenge for patients and usually last a lifetime.

Coping with a chronic condition takes hope and self-awareness. Take charge of your disease instead of letting it rule you. Some doctors, friends, and even family will say, “Just live with it” or “Get used to it.” But you are the one who lives with a chronic condition. You can learn to live with it and how to manage life around the symptoms and problems without losing yourself. 

Staying Positive

Being positive and hopeful in what you can make of your future is a big factor in determining whether you have a successful outcome. We need positive attitudes to make lifestyle changes. Some will be easier, such as changing your diet or beginning a physical therapy routine. Others will be more difficult, like having to sever ties with a family member or friend who is hindering your recovery. We also need the support from our healthcare providers.

Most of all, we need to recognize that we are responsible for ourselves and that a successful treatment may require changes that only we can provide to ourselves.

We all deserve to have our pain taken seriously. To have the pain managed well instead of under-treated, untreated, or over-treated is important. Pain must be managed effectively and in a timely manner, with the underlying condition being addressed while the pain is being managed.

Do not assume that your doctor knows how to treat your pain. Every patient is different and doctors only know what they have been exposed to in their practices, schooling and continuing education classes. We must keep going until we find the door that is right for us. 

Don’t forget your lifelines. There are prescription programs to help cover co-pays, ways to appeal insurance decisions, and ways to negotiate with your providers to get the care needed. The goal is to receive effective relief and be able to organize and manage all aspects of life.

Finding good healthcare and support systems will lower the number of hospital visits, time spent in the hospital, unnecessary trips to the emergency room, repeated tests, and inadequate treatments. All of which contribute to the high costs of healthcare. On average, living with chronic pain costs $32,000 per patient per year.

Staying organized, keeping good records, and communicating with your pain care team will help you get access to proper and timely care.

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 Addict is Not Our Enemy

By Fred Kaeser, Guest Columnist

A number of people in chronic pain support the plight of those with addiction. Yet, over the past year and a half, I have read any number of derogatory statements and comments here on Pain News Network and on its corresponding Facebook page about people who are dealing and struggling with addiction.

Even a cursory review of the comment section on different articles will reveal rather quickly any number of folks who are dismissive of those dealing with addiction. Some express a real hatred.

One person actually suggested letting “all the druggies overdose, one by one.”

Another laments that “addicts can't die quick enough for me.”

Some express a sort of jealousy over addicts getting better treatment than they: “It's good to be an addict" and "Maybe I'd be better off being an addict.”

And then there are those who got all shook up over Prince's overdose, not so much from his death, but because it was linked to an opioid and that it might make it harder for them to obtain their own opioid medications.

And to think these comments come from the same people who beg others to better understand and accept their own need for better pain care!

It wasn't very long ago that the "drug addict" was scorned and forgotten: the druggie on the dark-lit street corner or the drunk in the back-alley. Pretty much neglected and left to fend for themselves.

But that started to change in the '70s and '80s, and nowadays the person suffering from addiction is recognized as someone who suffers from a very complex disease, is quite sick, and struggles to access the necessary care in order to recover. Societal attitudes towards those with an addiction now reflect empathy and a desire to help, as opposed to denunciation and dismissiveness.

We chronic pain patients are looking for the same acceptance and understanding that addicts were desperately seeking just a few short years ago. And that struggle took many, many decades, one might say centuries, to achieve. Our struggle is similar, and my guess is if we keep our eyes and focus on reasonable and rational argument, we too will achieve success in our struggle to obtain acceptable pain care and understanding.

But if some of us continue to see the enemy as the person who has an addiction, our fight for justice will suffer and be delayed.

Why? Because the addict is not very different from us.  Irrespective of the reason why a drug or substance user becomes addicted, the addict just wants to feel better, just like us. The addict is sick, just like us. The addict wants relief from pain, just like us. Perhaps not from physical pain, but emotional and psychic pain. The addict wants proper medication, just like us. The addict needs help and assistance, just like us.

And sometimes the pain patient is the addict. Sometimes we are one in the same. A recent review of 38 research reports pegs the addiction rate among chronic pain patients at 10 percent. From a genetic predisposition standpoint, we must presume that some addicts have become addicted just because of their genes, just like some of us.

No one with an addiction started out wanting to become addicted, just like none of us wanted chronic pain. And while our government is trying to figure out how to minimize the spread of opioid addiction, it is not the addict's fault as to how it has decided to that.

In many ways those suffering from addiction are not very different from us who suffer from chronic pain. We both struggle for acceptance, we both require empathy and understanding from the world around us, and we both require treatment and proper care to lead better and more productive lives.

But, I firmly believe that as long as there are those of us in chronic pain who feel compelled to ridicule and demean those who are addicted, that we will only delay our own quest to receive the empathy we so justly deserve in our journey towards adequate pain care.

Empathy breeds empathy, and if we expect it for ourselves, we must be willing to extend it to others. And that includes the addict. 

Fred Kaeser, Ed.D, is the former Director of Health for the NYC Public Schools. He suffers from osteoarthritis, stenosis, spondylosis and other chronic spinal problems.

Fred taught at New York University and is the author of What Your Child Needs to Know About Sex (and When): A Straight Talking Guide for Parents.

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

How to Give Back on #GivingTuesday

Pat Anson, Editor

Most of us know all about Black Friday – the annual post-Thanksgiving shopping frenzy – that marks the day many retailers finally begin to turn a profit for the year. There’s also Small Business Saturday and Cyber Monday – also aimed at getting us to shop, shop, and shop some more.

But are you ready for Giving Tuesday on November 29?

That’s the day that kicks off the charitable giving season, when many people begin to focus on their holiday and year-end donations to charity. Now in its fifth year, #GivingTuesday relies primarily on social media (note the Twitter hashtag) to spread the word about giving and philanthropy – as opposed to the constant drumbeat about holiday shopping.

This year Pain News Network is partnering with other non-profits, civic organizations and charities to promote #GivingTuesday and other small acts of kindness.

I know kindness is something that pain sufferers could use more of. Many of you are no longer able to obtain pain medication or have seen your doses cutback.  Others are struggling to find new doctors and treatments, or pay rising insurance premiums and deductibles. It’s been a difficult year, and there’s a lot of uncertainty about what 2017 will bring to the pain community when a new administration takes office.

Whatever happens, I want you to know that Pain News Network will be there to cover it and keep you informed. So far this year, we’ve reached well over a million people around the world with PNN's unique blend of news, investigative reporting and commentary on issues affecting the pain community. We provide an independent voice – and go out of our way to include the patient perspective -- which you just don’t see in the mainstream media. This reader-supported journalism is only possible through donations from people like you.  

Please consider a donation to PNN today by clicking here. We’ve partnered with PayPal to provide a safe and secure environment for donations by credit or debit card.

If you prefer donating to another pain organization or advocacy group, please consider one of our affiliates – a list of which can be found by clicking here.  Non-profits such as For Grace and the International Pain Foundation do a remarkable job spreading awareness about chronic pain and are deserving of your support.

If you prefer an organization in your own community, #GivingTuesday has a web page that can help you connect with a local non-profit or school near you. If money is an issue, many charities are in need of volunteers willing to donate their time, goods or services.

As the name implies, #GivingTuesday is all about “giving back.”

How will you give back this Tuesday? 

Wear, Tear & Care: Needling Away Pain

By Jennifer Kain Kilgore, Columnist

One would think that encouraging inflammation is a bad idea, right?

“Let’s stick you with needles, inject a dextrose solution, and create some new tissue. It’ll be great!”

That’s what my dad has been saying since 2004. He had prolotherapy done for his low back in college, and it did wonders for him. I was extremely dubious. It sounded far too strange – injecting a sugar solution? Into my neck?

I have very extensive injuries from two separate car accidents. To sum it up quickly, I have badly-healed thoracic fractures, bulging lumbar discs hitting nerves, and two cervical fusions that cause a lot of post-surgical pain. The idea of purposefully creating more inflammation sounded insane. But after my second fusion, when the pain started increasing no matter how dutifully it was treated, I decided to give it a try.

Prolotherapy, or sclerosing injections, is still considered a bit radical, even though it’s been around since the 1930’s. The reason for the mystery is because there haven’t been enough double-blind studies conducted yet.

It’s a non-surgical ligament and tendon reconstruction injection designed to stimulate the body’s natural healing processes. By creating inflammation, you prod the body to create new collagen tissue and help weak connective tissue become stronger.

Because I live in the Boston area, that meant the drive to the doctor’s office was an hour each way. Most people do each area (lumbar, thoracic, cervical) separately, and each area takes approximately five rounds of shots. For me, that would’ve meant an eternity of needles.

I chose the insane route: five weeks of intense pain, meaning five weeks of all three areas at the same time.

It’s not supposed to hurt that much – people can take an aspirin and go to work after the appointment, grumbling about their aching knee. My pain response has become far more sensitive in my back and neck since the accidents, so what’s like a bee sting for other people is like thick surgical needles for me.

As such, it was hellishly difficult. Each appointment was on a Wednesday and took about fifteen minutes. The doctor injected my low back and then let me rest with an ice pack down the back of my pants. Then he injected my neck, loading me with more ice packs. Then, very gingerly, he approached the mid-back, which was the most damaged of all. He had to consult my MRIs for that one because the bones are not quite where they’re supposed to be.

For me, it took about an hour for the real pain to kick in, which gave me just enough time to drive home. The doctor numbed me with a topical anesthetic as well, so I sat on five ice packs and made the drive back to my house, where I collected all the ice packs in the freezer and arranged them on the recliner. Then I wouldn’t move for about two days. Sleeping was almost impossible without ice packs stuffed into my pajamas; I still can’t sleep on my back, two months later. Sitting like a normal human being was out of the question.

For five weeks, I spent the two or three days after shots recovering from absurd amounts of pain, and then by the time I’d recovered, it was almost time for the next round. My level of pain was far more than what other people online have reported. I also did a lot more shots at once than other people do. My experience was very much abnormal. But, most importantly: Did it work?

Well, yes. It did. Amazingly so. I’d told myself at the beginning that if this procedure controlled even 25 percent of the pain, that would be worth it. That would be worth the driving, the pain, and the out-of-pocket cost that isn’t covered by insurance.

My cervical fusions caused my arms not to work a lot of the time. Typing, writing, and using my hands for general tasks was very difficult and tiring. Additionally, my shoulder blades had what felt like black holes filled with electric fire. Nothing helped it. Nothing worked.

Two weeks into the prolotherapy regimen, my arms were fine and the black holes had disappeared.

I still have a lot of my daily low-grade, all-body pain. I still have massive headaches and neck pain. But my sciatica is also better, I’ve noticed – I was able to go to a rock park called Purgatory Chasm and clamber all over humongous boulders, and afterward I was only sore, not in agony.

So do I think it works? Absolutely. The other great part is that it’s supposed to last for at least a few years. Steroid injections only last a few months. I very much prefer this schedule.

If you can get past the “alternative therapy” label and can scrounge up the money to pay for it, I’d highly recommend prolotherapy. It worked for me, and I’m still waiting to see more of its effects. I hope that it works as well for you.

Jennifer Kain Kilgore 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 Jennifer 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.

Why I'm Thankful to Be Alive

By Crystal Lindell, Columnist

There were lots of times over the last year where I was not at all thankful to be alive. Where just the idea of being alive made me want to die.

Like that time almost exactly a year ago now when I was sitting on the toilet, sweating, with my elbows on my knees and my face in my hands, barely about to endure the physical withdrawal of morphine that I was going through.

I would have given anything to die right in that moment.

And there was the time back in the spring when I had a really bad reaction to a medication called Buspar (buspirone) that led to a days-long anxiety attack and the most vivid suicidal thoughts I’ve ever experienced.

I really wanted to die then as well.

But despite my pleas, I did not get to die. I kept living. And now, this year on Thanksgiving, I have the perspective to see why that’s a good thing.

Because during the past 12 months I’ve also gotten to go to Ecuador and France for work. I’ve met my friend’s new baby and watched her toddler learn to walk. I saw my sister’s basketball team win a state championship, dyed my hair blue, and had the best escargot and creme brulee in a French town just 30 minutes from the German border.

I got a promotion at work, and saw the sunset from the top of the Eiffel Tower. I saw the impossible become possible when the Cubs won the World Series, and I ate seafood while overlooking an infinity pool in Guayaquil, Ecuador.

There so many good things I would have missed. 

The episode with the Buspar was especially traumatizing. I had started taking it because of the intense, daily anxiety I was having after going off opioids. But I was one of the rare people who had an inverse reaction to it, leading to unbearable anxiety and suicidal ideation.

If you have never had a medication cause suicidal ideation, the best way to describe it is that your inner voice suddenly changes. And all you can think is, “Just do it. Just kill yourself. Nobody would miss you anyway. You don’t have to be in pain anymore. Your heart doesn’t have to break anymore. Just do it.”

I was wearing my favorite blue dress that day, and I can’t even look at it now without flashing back to the moment I had locked myself in the bathroom stall at work and decided to take all the pills in my purse.

Suicide isn’t very logical, so on some level it makes sense that I didn’t really come up with a logical reason to not do it. In the moment, I wasn’t able to convince myself that there were better days ahead or that anyone would miss me.

In the end, what stopped me was the very thing that has saved me so many times: My writing. I realized that if I killed myself in that moment I wouldn’t be leaving behind a suicide note. And I couldn’t very well die without a goodbye letter. So I stopped what I was doing, and found the strength in my wobbly legs to get myself out to my car and drive home.

Looking back and knowing how serious it was, I realize now that I should have gone the ER right then, but it would be days before I went in for a psych evaluation. In the meantime, I took lots of deep breaths and a hot bath and convinced myself to give this whole life thing a go again the next day.

That happened on May 17, and not a month goes by where I don’t mark that day. Where I don’t give myself permission to be a little more loving to my soul than I usually am. And where I don’t think back about all the things I could have so easily missed.

It’s been a long year, and most of what I’ve endured can be traced back to my physical pain and my attempts to break free from opioids. I did not see any of it coming, and was woefully unprepared to endure it.

But endure it I did. And it turns out, there were so many lights at the end of the tunnel. So many things I would have missed.

If you’re struggling, please don’t hesitate to get professional help. I promise, with my whole heart, there are so many lights at the end of your tunnel too.

For help, call the National Suicide Prevention Lifeline, 800-273-8255.

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.

Pain Companion: How to Survive the Holidays

By Sarah Anne Shockley, Columnist

The holiday season is upon us. For many it’s a time meant for joyful festivities, but for those of us in chronic pain, planning and participating in gatherings with coworkers, friends and family can pose significant challenges and stresses.
 
The demands on our energy, time and patience are likely going to become much higher than normal, and we’ll need to make wise choices about what we can and can’t do.

How do we find ways to participate enjoyably and not send our pain levels skyrocketing?

You Don't Have To Do It All

Learn to say no. Nicely, kindly, but firmly.

You don't have to be the person you were before you were struggling with pain, and you shouldn't try to be.

Yes, people have expectations of you and they forget that you're in pain. It's no fun, but you're going to have to gently remind others that you can't be everywhere and do everything they expect of you this holiday season.

Tell them that it's also hard on you, not be able to be as involved as you have been in the past, but that it is very necessary for your healing.

Let them know that the best way they can support your healing is to allow you to make the choices you need to make -- the choices that may keep you home a little more and out a little (or a lot) less often.

Give yourself permission to ask others to do more than usual so you can attend gatherings without wearing yourself out, and give yourself permission to stay home if you need to.

Let coworkers, friends, and family know that it's nothing personal about them. It's personal about you. You're taking care of yourself.

Give Yourself a Free Pass

Give yourself a free pass to say yes or no at the last minute, and decide you’re going to be okay with that. That means that you're going to reply with a firm "maybe" when you're invited anywhere. It means that you can leave the decision about whether you're up for something or not right up to the moment you're heading out the door. And it means preparing others to accept that.

Tell friends and family that you may need to cancel your attendance at the last minute, or that you may need to leave early, and ask for their understanding ahead of time. Let them know that you really want to be able to be with them, and your absence has nothing to do with how much you care about them. It has everything to do with taking care of yourself.

Then do what you need to do in that regard, and do it without guilt. Your priority is to find a way to take care of your need for rest and low stress, even in the midst of this demanding season.

Don't Cut Yourself Off

With that said, don't completely cut yourself off from friends and family either. Being with loved ones for special occasions can be one of the most joyful aspects of being alive, so you don't want to miss out entirely if you can help it.

So, here's my formula: Choose a small number, say 3 to 5 celebrations for the wholeholiday season that you feel are the most important to you personally. I don't mean the ones you used to think were important based on obligations to work, family and friends. I mean the ones you truly enjoy, the ones that feed your spirit, the ones you would really miss if you couldn't go.

If at all possible, find a way to get to those and only those. Go for only a brief period, if need be. Attend without contributing to food or preparations. Again, give yourself a guilt-free pass.

Let yourself have the times that are important to YOU, and say no to the rest.

This may sound selfish, but if you're in pain, you need to be a little more selfish. It isn't doing anyone any good for you to wear yourself out trying to do everything you used to do and go everywhere you used to go, if you will be raising your pain levels and not enjoying yourself.

So, instead of being exhausted and grumpy at too many functions, pick a few choice ones you can attend with enjoyment. Above all, be kind to yourself and take care of yourself first.

Find an Ally

Recruit a holiday ally -- a friend or family member who understands your situation -- who will do the explaining for you, drive you over to functions, pick up the slack in terms of bringing food or making arrangements, and agree to leave early with you if it's necessary.

You might find someone for the whole season or you might want to ask a different person for each function. Remind yourself: You need more help. You need to do less.

Don’t hide away this holiday season if you can help it, but also give yourself the gift of attending fewer functions, say yes only to the ones you really enjoy, find an ally or two who will support you, and giving yourself a free pass to say no so that you can fully enjoy the celebrations you do attend.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom 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.

Time to Fight for Our Rights as Pain Patients

By Carol Levy, Columnist

Where exactly do the Drug Enforcement Administration and the Centers for Disease Control and Prevention stand on working with and helping those with chronic pain, as opposed to ignoring our voices and pleas?

At the Rally Against Pain in Washington, DC on October 22, the CDC was invited to come but no representatives attended.

The DEA notifies all that they will be banning kratom because it is “an imminent public health hazard.” But after a major hue and cry from the kratom community, a decision was made to conduct a new analysis of the herbal supplement and have a public comment period.

Why is it that kratom and medical marijuana, which many patients say are effective in relieving chronic pain, are poison to the powers that be in Washington?

Is it just the result of lobbying by the pharmaceutical industry in an effort to protect profits?

Is it another jab at us because they can't see our “invisible” illnesses and disorders?

Is it a result of the media and the public not knowing or caring about our plight?

October 7 was Trigeminal Neuralgia Awareness Day. Many of us tweeted and posted on Facebook about it, but the news media for the most part gave it a ho-hum. Do they have a policy of not reporting on a disorder if they don’t think enough people have it?  

Instead, the media seems content to repeat the hysteria laden stories and recycle articles about opioid medication abuse, while mostly ignoring those who may benefit from opioids or have them as their only treatment option.

While it is scary to see headlines about banning kratom and other substances many of us use for pain relief, it is worth remembering that an FDA advisory panel in 2009 voted to ban Vicodin and Percocet, because of their effects on the liver. No such ban was adopted, but they did change the amount permitted and how you can get them.

We need to be concerned about the “slippery slope” that comes with threatened bans. Instead of reacting with fear and wasting our emotional energy, we need to respond proactively. Better to get out paper and pen, and start sending letters and emails to your representatives in Congress and the FDA, DEA and CDC.

Kratom supporters won their battle, at least temporarily. Why can’t we?

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.

Can Trump Make Healthcare Great Again?

By Barby Ingle, Columnist

As a chronic pain patient, I know that the Affordable Care Act (ACA) has not been so affordable for some people. Here in Arizona, monthly insurance premiums are going up 75 percent and the national average is seeing a double digit increase.

Running a foundation for the past decade, I have heard many stories of patients unable to afford proper and timely healthcare. Since the enactment of Obamacare in 2010, I've heard even more stories of regret, loss of care and rising costs. Premiums have gone up so much that many would rather pay the penalty for not having insurance, instead of getting it.

I am not sure if President-elect Donald Trump can "repeal and replace" the ACA in a timely manner. It will take an act of Congress to completely repeal ACA and eliminate the individual mandate.

We need to broaden healthcare access for all Americans, especially those of us living with chronic illnesses. Let’s look at the 7 steps proposed by Trump during the presidential campaign.

1. Completely repeal Obamacare and eliminate the individual mandate. No person should be required to buy insurance unless he or she wants to.

I agree with not mandating the purchase of insurance, but I also see why it was put into the plan. It was thought if we force everyone to pay into the system, it will be easier to bear the costs of caring for the elderly and disabled. 

Current enrollment for Obamacare shows that less than 12.7 million of the 40 million without insurance are now covered. That's progress, but even with subsidies, many people in pain (not on disability) are unable to afford coverage. Also, many with insurance were cut from their long-time providers as their plans were no longer accepted by the provider.

2. Modify existing law that prohibits the sale of health insurance across state lines. As long as the plan purchased complies with state requirements, any vendor ought to be able to offer insurance in any state. By allowing full competition in the market, insurance costs will go down and consumer satisfaction will go up.

This is one provision I would like to see. I travel currently for my pain management care. I would like to see the sale of health insurance across state lines, as I believe it will offer me better in-plan coverage. Paying out of network is very costly for patients like myself.

As we allow the free market to play a bigger role, we must also make sure that no one slips through the cracks simply because they cannot afford insurance. We must review basic options for Medicaid and work with states to ensure that those who want healthcare coverage can have it. I don’t believe that basic Medicaid covers enough treatments for chronic pain patients.

I would also want multiple patient representatives and caregivers to play a role on boards and advisory committees that make these decisions. There is no plan in place for the involvement of the patient voice that I am aware of.

3. Allow individuals to fully deduct health insurance premium payments on their tax returns.

I would like the ability to fully deduct my health insurance premiums. Businesses are allowed to take these deductions, so why wouldn’t Congress allow individuals the same exemptions?

4.  Allow more individuals to use Health Savings Accounts (HSAs). Contributions to HSAs should be tax-free and should be allowed to accumulate from year to year. These accounts could become part of the estate of the individual and could be passed on to heirs. HSA funds could then be used by any member of a family without penalty. 

As someone who has participated in an HSA in past years, I found that they were not a benefit for me as a chronic pain patient. I spent everything in my HSA account as fast as it went in from my husband’s paychecks.

But for others who don't have to worry about paying for long-term chronic care needs, I have seen the HSA system work and help spread out costs throughout the year. HSA accounts would be particularly attractive to healthy young people with high-deductible insurance plans.  

5. Require price transparency from all healthcare providers, especially doctors and healthcare organizations like clinics and hospitals. Individuals should be able to shop to find the best prices for procedures, exams or any other medical-related procedure.

I believe in 100% price transparency from all providers, insurance companies, pharmacies and hospitals. We should be able to easily see the costs of our care.

6. Give Medicaid block grants directly to the states. Nearly every state already offers benefits beyond what is required in the current Medicaid structure. The state governments know their people best and can manage the administration of Medicaid far better without federal oversight. States will have the incentives to seek out and eliminate fraud, waste and abuse.

I like this as well. Giving each state the ability to fund and provide their own Medicaid benefits will be beneficial. We have to cut down on fraud and get proper and timely access of care to those who need it most.

7. Remove barriers that prevent foreign drug makers from offering safe, reliable and cheaper products. Congress will need the courage to step away from the special interests and do what is right for America. Allowing consumers access to imported and cheaper drugs will save money.

We need more abuse resistant medications, along with drugs that are more affordable. I agree that allowing consumers access to imported drugs will give us more options and help cut prices.

These seven steps are just the start of what we need to make the system work better. The process will take years to figure out. Let’s keep our voices loud as patients and advocates, so that we keep the good parts of our healthcare system and increase access for those who need it by lowering costs and opening access to alternative treatments. We also need to address the abuse of opioid medication, while maintaining access for those that truly need it. 

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.

CDC Satire Gets Taken Seriously

By Pat Anson, Editor

Everyone likes to be in on a good joke, but an article recently published online as medical satire is being taken seriously by some pain patients and healthcare professionals.

The article, published by Gomer Blog, claims the Centers for Disease Control and Prevention has released new recommendations urging doctors to ignore patients who have a pain score greater than 4. Pain levels are commonly measured on a scale of 1 to 10.

The Gomer Blog story even has a purported quote from the CDC's director:

“Look, here’s the deal.  When you say your pain is 1, 2, 3, or 4, that’s actually believable to health care providers, so we’ll give you Tylenol, maybe even an NSAID,” explained the Director of the CDC Dr. Thomas Frieden.  “When you start getting into that 5 through 9 territory, it starts getting a little suspicious.  And we all know that pain of 10 or greater than 10 is, well, honestly, just bullsh*t.  So greater than 4?  Ignore.”

That would be funny, except for the fact I can actually see Frieden saying that.

Another quote from the story is from a fictitious doctor:

“In today’s health care climate half of my day is spent arguing with patients about opioids,” said primary care physician Jamela Wilson.  “The other half of my day?  Arguing with patients’ significant others about opioids.”

I could see an actual doctor saying that, too.

Not a word of the Gomer Blog story is true. But in the current Bizarro World of pain care -- where Medicare is afraid to ask patients about their pain treatment, the CDC hires a PR company to improve its image, and the DEA declares kratom an "imminent public health hazard" and then decides maybe its not -- well, some people have trouble sorting fact from fiction. And who can blame them?

“Is this true? I'd love to see you guys write something about this,” asked one PNN reader, who included a link to a nurse’s training center in Florida that republished the Gomer Blog story on its website.  

The FTC Training Center, which says that its mission is “to support the lifelong education of nurses,” never mentions that the Gomer Blog story is meant as satire. The post was made by Florvilus Nessley, a program director at FTC, who offers training and certification for nurses on hepatitis, dementia, the Zika virus, urinary tract infections and therapeutic hypothormia. Interesting curriculum, Florvilus. 

Calls and emails to the FTC Training Center were not immediately returned, as they say.

Gomer Blog describes itself as a “satirical medical news website created by a bunch of wannabe stand up comedians who ended up in healthcare.”

Recent Gomer Blog posts include articles about an infectious disease clinic handing out free chastity belts and hospitals blocking TV coverage of the presidential election to promote healing.

I can see that happening, too.

Safety Tips for Living with Ehlers-Danlos Syndrome

By Ellen Lenox Smith, Columnist

Living with Ehlers-Danlos syndrome (EDS) is a lifelong process that requires constant monitoring on how to remain active, yet also physically secure and safe.

EDS is a condition that leads to deformed connective tissue, the “glue” that holds the body together. Any sudden move or jolt, and your muscles and joints may come apart.

There is no cure for EDS, so living life with this condition means accepting a certain level of chronic pain.

I want to share some safety tips that I have learned that I hope will help others, like myself, who have EDS.

Car Safety

To prevent your sacrum from shifting out of place while getting into and out of a car, it is best to find a car seat where you do not have to either dip down or lift yourself up when getting into the seat. If you can just slide into the seat, you have the best chance of staying in position.

We ended up with a Prius recently and I realized I had to have the seat changed. Although the height was correct, I had to lift myself into the seat due to the design that sinks in from a lip on the side. We were able to find a person that could reconstruct the seat, making the entire surface flat.

To get into the car with the least chance of slipping out of position, I sit down on the seat, turn towards the front of the car and then I swing my legs into the car.

Check and see where your legs are when you sit down. It is best if they are at a ninety degree angle, not above your waist or below. The best way to judge may be to focus on your knees. If they are higher than your hips, you are probably in trouble.

Reaching

If you are sitting in a chair and something drops to either side, for many of us with EDS, the most damaging thing we can do is lean over to the side and reach down to pick it up.

That will cause what is called an "up-slip," where the femur jams up into your hip. It does not hurt at first, but tends to show up the next day and is very uncomfortable. To check if you have created this problem, lie on a bed, arch up and then gently put your legs down. Have someone check to see if your ankle bones meet. If there is an upslip, there will be a difference in the leg lengths. Get it corrected as soon as you can before it creates significant pain.

Opening Cans

Using downward pressure while attempting to open a can with a can opener can cause you to potentially sub lux your hand, fingers, elbow and/or shoulder. A simple fix to this is to purchase a product called the Handy Can-Opener. All you do is set it on the top on the can, press a button and let it do the magic of opening the can for you!

Sleeping Safely with POTS

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a condition that causes light-headedness, fainting, unstable blood pressure, abnormal heart rates, and sometimes even death.  I learned I had it in my 60’s.

I was instructed to sleep at a 30 degree angle by raising the entire frame of the bed at the head. At home, this is a simple process to do by putting boards under the frame. But what about traveling and staying in hotels?

We found out from a physical therapist that there are bed raisers sold that college students use to raise their dorms beds up to be able to store items underneath. We purchased four plastic bed raisers and found that if we use two on each of the head corners, we are able to raise hotel beds up for me to simulate some of the height we have at home.

It is not as high as my bed, but certainly better than sleeping flat with POTS. You might want to check with the hotel or motel to ensure access to a bed which can be adjusted in this manner.

Greeting Friends and Family

If you are like me, when others see you, they assume you are fine and don’t understand that a simple hug can cause subluxations. Many times, when my husband is with me, he will warn others to not touch me.

The hardest thing is when I am by myself and someone throws me off and suddenly is greeting me with a hug. I almost wish I could wear a sign that says, “Do Not Touch.”

Try to stay vigilant and ward off the damage that comes when someone who means well greets you, only end up hurting you my mistake.

Twisting

I was taught in physical therapy that when you twist, you must move from the hips. I made the mistake of twisting just from the waist and proceeded to sublux my back out. With EDS, when you throw something out of place, it can take weeks for it to settle down and hold properly again.

When sitting, It is also important to not cross your legs, for this can throw your sacrum out of place.  

Shoes

If you have flat feet, getting good arch support is a must. Also, if you are having problems with your legs and/or feet subluxing, then wearing sneakers with the arch support inside them is the best bet. Also find sandals that have a good arch when you are not able to wear sneakers.

Trachea and Neck Stability

I have spent many years dealing with a trachea and sternum that shifts out of place. Despite sleeping with a bi-pap breathing machine,I have had many episodes in which my breathing was cut off. My lifeline at night for many years has been my service dog alerting me when the air flow has decreased or cut off.

I am now a proud owner of a new pillow another EDSer discovered that is holding the neck and head in the correct position and not allowing the trachea to collapse. I would encourage you to give it a try. It is called Therapeutica sleeping pillow and mine came from Core Products International.

Be sure to get the correct size. I had to exchange mine down to a child’s size to correctly stabilize the head.

Carrying Objects

For most of us, as we progress with EDS, holding items in our arms is painful and can cause more issues. While I was still teaching, I finally resorted to buying a luggage with wheels, like you see in the airport.

I don’t know why I hadn’t thought of that sooner. I used to carry 125 students essays and my books up to the second floor of a large school. I would ache for days after doing it. But once I switched to pulling the bag, life had a positive change. Today, I pull my swim items into the pool and can be more self-sufficient this way.

I hope these tips will be of help and hope you will comment and leave tips you have discovered. We need to help educate each other for a safer and less painful life.

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.

How to Improve Self-Care and Coping at Home

By Barby Ingle, Columnist

Whether you are in pain or caring for someone in pain, it often seems the weight of the world is on your shoulders.

Want to know some ways to lighten that load?

The Chronic Care in America survey was conducted by Harris Interactive in 2002, but still holds some valuable lessons.

The survey of over 3,000 chronically ill patients found that those who were who were organized and made lifestyle changes at home were more likely to be free of depression and to live healthier lives.

They were proactive and knowledgeable, and firmly believed their lives still had value and purpose.

I have my own list of things that I’ve done at home to improve my self-care and coping skills over nearly 20 years of living with chronic pain diseases.

The Bedroom

In the bedroom, the most used room in the house, I created a blanket support frame so that the weight of blankets or sheets does not rest directly on my feet.  I used a body pillow for $7 from Walmart and put it at the bottom of my bed. The sheets and blankets go up and over and keep me warm, but without physical contact with my feet.

You can also install blackout curtains in your bedroom so you have a quiet and dark place where you can retreat during breakthrough pain, migraines, etc. I did this throughout my entire house, which has helped so much on my severe migraine days. For safety, I added nightlights throughout the house so I can still walk around.

Keep commonly used items close to the bed for easy reach (remote control, medications, cup of water, reading materials, etc). Keep the floor from being cluttered to avoid tripping and falls. I even removed area rugs after a few trips and falls myself.

We all know how important sleep is. Keep your bedroom ventilated. Being too hot or too cold can interfere with quality sleep. Make sure your mattress is comfortable and use pillows that provide support as needed.

The Bathroom

The second most used room in the house is the bathroom. I found that drying with smaller towels so the weight of the towel doesn’t wear me out or drag across painful areas is extremely helpful. I also put small towels between me and the shower water when taking a shower, as the water drops can feel like thousands of needles poking me.

We also installed grab bars in the bathtub, shower and next to the toilet for when I am off balance and or having a migraine that has me seeing double. We also put a shower bench into the tub. I love it and so does my husband. This helps save energy pennies. Showers and baths can be one of the most draining activities we face.

My husband got me a hairdryer stand as a Christmas present a few years back. It is great -- no more having to try to hold my arms above my head. I can just sit in front of it and dry my hair with no effort. My dentist also suggested an electric toothbrush which has helped me improve my dental hygiene. And for the worst of worst days, I soak in Epsom salt baths to relax

The Kitchen

The third most used room of the house is the kitchen. I suggest you come up with easy to make recipes that are good for you and that you like. I found crock pot cooking is a great way to have a good meal and they’re easy to prepare.

Keep commonly used items at waist height so you don’t have to reach, which can increase pain and use up energy pennies. We switched out our smaller kitchen knobs for large knobs on the appliances and cabinet doors so they’re easy to open and close. Lightweight dishes and pots, as well as paper and plastic plates and cups, are also easier to use and inexpensive. They also have the bonus of when you drop them there is no glass to clean up.

Long handled brooms, dustpans and sponges make cleaning easier, and long-handled "grabbers" make it easier to reach items on high shelves or picking them up from the floor. Turntables on kitchen shelves make it easier to reach items in the back. My husband helps me split larger food items or food needing to be prepared in Tupperware. And my favorite kitchen tools are the electric can and jar openers.

I hope you find my tips helpful and that it sparks some ideas of your own so you can organize your own home. The goal is to have better daily living, spend less energy pennies, and have more time to do things that you actually want to do.  

You are worth the investment in yourself! It’s easy to put these steps on the backburner, but taking the time and energy now can help you feel better and may even help you live longer.

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.

Miss Understood: The Oska Pulse Trial

(Editor’s note:  Several weeks ago we were contacted by a representative for Oska Wellness, a San Diego company that makes the Oska Pulse, a wearable device that uses Pulsed Electromagnetic Field technology (PEMF) to treat pain. According to the company, the device dilates blood vessels and releases the body’s natural endorphins, which “has been shown to reduce joint and muscle pain by reducing inflammation.” It sells online for $399.

The company was invited and agreed to provide an Oska Pulse at no cost to PNN columnist Arlene Grau for a test run.)

oska wellness image

By Arlene Grau, Columnist

As many of my fellow pain sufferers know, when it comes to finding relief most of us are willing to try anything. In order to relieve my pain I go through a long list of pain relieving strategies, including a TENS unit, opioids and pain patches. So adding the Oska Pulse wasn’t anything new, especially since the directions were so easy to follow.

In the first weeks of treatment, it’s recommended that you use the device 4-6 times a day for half an hour. Although I don't work due to my being on disability, I'm still a busy mother of two, so this seemed a bit much for me. But I followed the guidelines to get the most out of my experience.

The Oska Pulse is very easy to use. You simply wrap it over the area you want to target, push the button, ensure it beeps and lights up, and the device does the rest. You don't feel or hear anything while it's on, except for when it shuts off, which is kind of nice because you can either relax while you wear it or go about your business. I used it for both my lower back and right hip.

After about a week, I was able to get some pain relief from the Oska Pulse. I wouldn't necessarily compare it to the relief I get from opioids, but it was enough to make me feel like I didn't need to take prescription drugs every 4 hours (which is a triumph). I only took them at bedtime or once or twice for breakthrough pain during the day.

I found that wearing the device 2-3 times in the morning when my back pain and hip are usually at their worst gave me the best results. Then I would wait a few hours and wear it again for one interval. At bedtime I would lay in bed and wear it another 2-3 times.

With the exception of how often I needed to use the device, which is what I think some people may be turned off by, I think the Oska Pulse really helps.

For those of you who work, you can actually wear the Oska Pulse over your clothing and still feel the effects of it. The benefits outweigh the inconvenience of wearing it.

I originally thought the Oska Pulse was not going to work for me, since I'm used to the TENS unit shocking my body and actually feeling something happening. You don’t really “feel” anything when the Oska Pulse is on, but I felt a difference after every use.

In my personal opinion, I think the Oska Pulse did a great job at temporarily relieving my pain and minimizing my inflammation.

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

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.