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.

Pain Companion: Overcoming Victimization

By Sarah Anne Shockley, Columnist

One of the most challenging things about being in chronic pain is the powerlessness we often feel because we are unable to heal our bodies and stop the constant pain.

We may feel victimized by our conditions, pharmaceuticals, invasive procedures, the impersonal nature of most institutions, and even our own bodies.

We may feel we are at the mercy of an interlocking system of agencies and organizations, one or all of which may not present a caring or compassionate face. Medical and insurance forms, appointments, tests, procedures, and legal hearings don’t take into account that we are not at our best physically, mentally and emotionally.

Yet we may blame ourselves if we are not on top of the situation or able to answer questions clearly and accurately.

Sometimes, being ill or injured feels like a crime committed by us!

Take Responsibility

Believing that others are responsible (or guilty) places them in a position of power – leaving you to become the victim. To leave that feeling of powerlessness behind, I decided that, regardless of the circumstances of my injury, I was responsible for my situation from that point forward.

I declared myself at the center of my own emotional and physical well-being and recovery. I decided not to accept an outside source as the final authority, no matter how credible. I knew that I was the one who would ultimately heal myself anyway, regardless of the method used.

That decision alone, while not bringing with it an instantaneous and miraculous cure, at least afforded a measure of relief and a feeling of having more access to different choices, rather than living entirely at the mercy of outside authorities and systems.

Notice What You Can Control

In an effort to feel less at the mercy of outside forces and more in control of my life, I started noticing what aspects of my life were still under my control.

I noticed the decisions I was already making and congratulated myself for them. I also looked at the ones I could take back -- that I had handed over to others because I didn’t know I could make them for myself or felt I didn’t have the knowledge or strength to make on my own.

Instead of following along with everything suggested by medical practitioners without question, I took authority back for myself and became part of the decisions about medications and treatments.

Choose Your Own Path

I decided that I was in charge of my own healing path. I became as knowledgeable as I could about my condition and what modalities were available, so that I could make informed decisions about my treatment.

I researched alternative therapies, natural healing, recent studies and the latest medical breakthroughs. I read blogs and stories about how other people were coping with my condition, and how some had made improvements or found ways to cure themselves.

I looked into what I could can do for myself: How improving my diet could help healing, how I could think more positively, what herbs and supplements might be beneficial, how I could reduce the amount of stress I was under, and how I could get more restful sleep.

Some of these things made only small changes in the amount of pain I was in, but doing them gave me a greater sense of direction in terms of finding ways to live with and ease my pain. It felt empowering to make my own choices, instead of putting my condition and my pain at the helm all the time.

Living with constant pain can make you feel powerless. It’s easy to feel that you have lost control over your own destiny. But thinking of yourself as a victim of pain or a victim of circumstances does very little to help you move toward whatever healing is possible for you.

Deciding to take control of whatever is in your power, taking responsibility for your own healing path, and making conscious choices toward increased well-being on a daily basis can help relieve feelings of victimization and powerlessness. And it allows us to be more fully available to new possibilities that may come our way.

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.

How Positive Thinking Helps Me Cope with Chronic Illness

By Ellen Lenox Smith

Recently, I had a column published on tips for coping with gastroparesis – a digestive disorder that interferes with the movement of food through the intestine.

Despite my research and best efforts to try all the advice I gave, I continued to have no success with elimination. My life was weekly colonics, along with home enemas on the other days.

After six months of my gut essentially being shut down, I finally went to a new doctor, to find out that the diagnosis of gastroparesis was incorrect. I was dealing instead with “motility issues” caused by Ehlers-Danlos syndrome.

Feeling frustrated and discouraged, but also determined, I decided to try one more alternative treatment to see if I could find some relief.  

I found my old DVD of the “The Secret” and forced myself to once again listen carefully to what was being described, to see if this could turn things around. I had used this process before when I first had to retire, as I was experiencing excessive stress relative to our financial situation. I was so concerned how we would survive financially without my income.

Watching the DVD, I learned to understand that energy flows where attention goes, and that life is a product of our thoughts and feelings. It seemed nuts to me at the time, but I had nothing to lose and everything to gain if the process worked.

ellen lenox smith

I began to focus on wanting to have enough money to pay our bills. And strangely enough, within a month, that stress over money seemed to leave me and I began to trust that things would fall into place.

Today, ten years later, I have remained calm about money, which still shocks me! This was not who I was before.

Now I was back to the drawing board to see if this could turn my motility issues around. Since energy flows to what you focus and think about, you have to train yourself not to focus on what you don’t want, but on what you are grateful for andwant in life.

To give this a try, I was to wake up each morning and spend a few minutes in bed thinking about what I am grateful for and then visualize what I want in life. Since it seems harmless and I needed help, I decided to try this process again.

About three weeks ago, I started doing this visualization, remembering what it was like to feel the sensation of having to eliminate and also the process of feeling the release. I know this sounds somewhat irrational, but after six months of nothing working, I was game for anything.

Within three weeks of trying it, I began to not only feel the sensation, but actually began to have success with elimination. All seems to be “on go” unless I eat foods that I react to or I’m under stress, both of which cause the GI system to shut down.  

My system has only shut down three times in the past three weeks. Something is changing and the results are thrilling and fill me with new hope.

Focusing on the positive and pushing negative situations out of the mind is not easy. Just look at the evening news! We wait until the end of the national news for one piece called “Making a Difference” that ends the broadcast with one positive report. Why don’t we sit and watch all positive things that have happened that day?

“The Secret” states: “Everything we think and feel is creating our future. If you’re worried or in fear, then you’re bringing more of that into your life throughout the day.”

What do you have to lose to give this a try? I now no longer stress about money and have added a successful movement of my gut again after six months of no success. I love how much more positive and hopeful I am feeling by practicing this simple process. Future goals to try will be imaging a walk on sand and in my yard,. along with driving again.  

Over the past eight years, I have utilized many conventional treatment modalities. Not all have proven successful, but I feel that I owe it to myself and my family to explore any treatment which might enhance the quality of my 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.

A Pained Life: Show and Tell

By Carol Levy, Columnist

I’ve written before about Susanne Main’s Exhibiting Pain research project --- which looked at creative ways to express the chronic pain experience. I was happy to contribute a picture that conveys how quickly pain from trigeminal neuralgia can strike.

The Exhibiting Pain project recently ended, but before closing participants were asked if they had ideas for more research or collections.

My thoughts on the question turned to my own experience trying to get a diagnosis and help for my facial and eye pain.

Because of an insurance issue I had to go to a hospital clinic for over a year. Every visit was the same. I saw a medical resident, sometimes the same person, sometimes not. Regardless, the visit always followed the same script.

“I have terrible pain in my face,” I would say, while pointing a finger towards my face and drawing a circle around the painful area. Because of the horrendous pain triggered by any touch, I made sure not to come in contact with the skin.

The resident would look at me. Then he would shrug his shoulders or shake his head.

“I don't know what you have,” he’d say. “Maybe it's psychological.”

Other residents were dumbfounded and would send me home with a verbal pat on the head. I literally had to cry during a phone call with one resident before I was finally prescribed pain medication.

As many times as I showed up for my appointments, at least once a month, sometimes more, I would always say the same thing: “This is where the pain is.”

My finger never varied from the circle I drew the first time they saw me, and their answer never varied: “I don't know what you have.”

One evening I finally got a diagnosis. The only problem was it came while I was on a date with one of the ophthalmology residents. We were touching. My date lifted his hand and brought it up towards the left side of my face.

I yelled out: “Don't touch me there! You’ll set off the pain.”

He looked at me with a strange expression. “Exactly where is the pain?” he asked.

I mapped out the same area for him that I had at the clinic, for him and all the other doctors I had seen.

He sat up and stared at me.

"I know what you have. You have trigeminal neuralgia.”

It was surreal. His diagnosis was horrendous and scary. And we were on a date for goodness sakes. Why now? Why not tell me that in the clinic?

I never varied in the area I indicated and described, no matter how many times and how many doctors I saw.  For some unknown reason, it was apparently ignored. I would later learn the area I showed them was the exact anatomical map of 2 parts of the trigeminal nerve. In fact, I was a textbook case.  So why did they ignore me?

That I can't answer. But Susanne Main's work has led me to a conclusion: What if doctors asked to see a drawing of where the pain is located and how it feels? Would they be so quick to dismiss it, to not hear what we are trying to tell them?

Maybe the visual is what is necessary to open their eyes. And their ears.

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.

Tips for Managing Your Meds

By Barby Ingle, Columnist

When it comes to managing medication, the more you know about your medical condition the better equipped you’ll be to understand which drugs to take, the side effects to watch for, and when to take them. It is also a great idea for your caregiver to know.

There are many times when I am not doing well and my husband will say, “You seem dizzy. Have you taken XXX yet? When was the last time you took it?”

Or he’ll say, “We are going to go out later to get groceries, so take your pill now so you won’t be sleepy when we go and you will be more comfortable.”

Having someone there to help me is great, because sometimes I feel so awful that I cannot remember to take my medication or even what I have taken. I have overdosed on different medications a few times because I forgot I had already taken a dose.

Here are some tips I’ve learned to manage my medications safely:

1)  Use a pill organizer to keep track of your medications. I have a pill box for a two week supply separated into morning and night pills.

2)  Keep medications without childproof caps away from children or lock them up, especially if you have opioid pain medications.

3)  Take your pills at the same time each day, especially when medications are time-released versions. This helps to keep the level of medication consistent in your body.

4)  Know why you are taking each medication, how best to take them (before or after eating), and any side effects that you may experience. Find out what your doctor wants you to do for each medication and verify it with your pharmacist.

5)  Be sure to never break or split time-release pills. Breaking the seal can be very dangerous as your body can receive the dose of the whole pill too quickly and it can become deadly.

6)  Carry a list of your medications and doses at all times in your purse or wallet. You should also update your pharmacy records to include all of the drugs that you take, including any over-the-counter medications. I use Walgreen's and they have a great online site that allows me to update it from home.

7)  Do not drive under the influence of medication that affects your cognitive thinking. It is also a good idea not to drive while taking medications that cause drowsiness or when you are distracted by pain.

8)  If a medication is making you sick or causing side effects that you cannot tolerate, talk to your physician about adjusting the dose or changing the medication. If side effects include trouble breathing, a rash or more severe symptoms, head to a local emergency room for immediate assistance.

9)  Read prescription labels and inserts carefully. They contain important information such as the medication’s name, dosage, prescribing doctor, and expiration dates. This can help you avoid taking a medication for too long or having adverse effects from long-term use.

10)  If you are a drinker, be sure to discuss with your provider or pharmacist if it is safe to drink with any of the prescriptions or over-the-counter medications you are taking.

11)  If you have more than one doctor prescribing medications, be sure to tell all of them what you are taking, so they can be alert to possible interactions and complications. I had to do this for myself and have not had these issues since.

12)  If you decide you no longer want to continue a medication, get your provider’s guidance before you stop taking it. Some medications can be stopped immediately, but many require you to titrate or taper off them.

13)  If you discontinue a medication, be sure to dispose of it properly and immediately. You should also dispose of medication once the expiration date has passed. The FDA has a list of disposal recommendations you can see by clicking here.

Some medications such as inhalants have hazardous material disposal requirements. Follow the specific disposal instructions on the drug label. If no instructions are given, you can crush and mix medications with coffee grounds, cat litter, or food scraps. Then seal them in a bag or a container (such as a margarine tub or jar) and discard them in the regular trash.

Many pharmacies and law enforcement agencies have “Drug Take Back” events that you can participate in. Find out more from your local pharmacist or police station.

Following these tips will keep you, your loved ones and your community safer.

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.