Pain Companion: Losing Your Smarts to Pain

By Sarah Anne Shockley, Columnist

In my last column, When Pain Hijacks Your Brain, we looked at a couple of ways that living with chronic pain affects cognitive ability; specifically, blank spaces and brain freeze.

This month we’ll look at memory loss and overall loss of brain power, and share some tips I’ve learned about mitigating their impact.

What to Do About Memory Loss            

Can’t remember what you did yesterday or even two minutes ago? Short-term memory loss is common for people in pain. I believe it is because the body and brain are simply overloaded having to deal with compromised health, and the overall stress and exhaustion that pain creates in the system.                   

Sure, forgetting things happens to everyone. But for those of us living with chronic pain, it seems to happen more often and it takes longer for our brains to come back online.                 

Write yourself notes and stick them everywhere. Write the note immediately or you will forget not only what was supposed to go on the note, but that you were writing a note at all. (No kidding)                               

I keep the smallest size of Post-it Notes in my car and stick notes on the dashboard so I don’t forget where I’m supposed to be later or what I need to do when I get home. I leave these little pads all over the house with pens nearby.                   

I have Post-its all over my computer, my desk and my kitchen, and I just throw them out when I’m finished with them. I have gotten into the habit of writing EVERYTHING down the minute it comes into my head and sticking it immediately where I will find it later.                   

What about the problem of walking over to the Post-it pad and forgetting what you’re supposed to write there on the way? (You’re only laughing because something similar has happened to you, I’m sure!)

Go back to the physical spot where you were when the thought came to you and put yourself in the exact same position and wait a moment. Somehow, the body and brain sort of coordinate in resetting yourself back in time, and then your brain often sends you the same message again.                   

Oh, and don’t forget to have the Post-its and pen already in hand.        

What to Do About Loss of Brain Power                   

My brain in pain can barely make sense of how to balance my bank accounts. Truly. It scares me to look at a row of numbers. Not because numbers are scary to me or I’m terrible at math – I aced all my graduate finance and economics courses – it scares me because, when in pain, I can’t make heads or tails of them. It’s like looking at Egyptian hieroglyphs.                   

It is incredibly disconcerting to lose your smarts to pain. Focusing on anything becomes nearly impossible. I remember having a vocational aptitude test done after I was injured and not being able to read a high school level paragraph or answer the questions appropriately.

I sat there and reread the same three-sentence paragraph about four times and simply couldn’t make any sense of what they were asking me to do with it. If you’ve had an experience like this, you know how frightening it can be to realize you just don’t have access to your normal cognitive functioning. It’s like someone turned the lights off upstairs.

Your brain in pain is simply not firing on all cylinders or most of its energy is going to dealing with the pain you’re in and healing your body. There just isn’t much brainpower available to you for normal cognitive processes.                   

This was true for me during the most acute part of my pain and it went on for quite some time. Thankfully, I have been able to recover much more access to my cognitive processes since then. So, please know that if you are going through the worst of this kind of side effect right now, it can get better as you move out of the most acute pain. You can get your brain back.             

For the purpose of regaining a modicum of brainpower, and for using some of my unused mental energy, I started doing extremely easy Sudoku puzzles, a popular Japanese number game.                   

At first, doing Sudoku worked like a sleeping pill because I quickly wore my brain out just trying to make sense of the very easiest puzzles and basically knocked myself out. I kept at it as a nightly sleep aid and eventually I was able to complete the easy puzzles. I usually had to erase what I’d already filled in and start over about 3 or 4 times in order to finish one small puzzle.                

I found that, in addition to acting like a benign sleeping pill, Sudoku helped bring my brain back online over time. I was able to progress from Easy to Medium to Hard. (I have not graduated to the Evil level yet.)

This tells me that even if the brain is hijacked by pain, it is possible to bring it back by starting small. Simple crossword puzzles can work too, but initially I found that even these were too demanding and frustrating. I could come up with a number from 1 to 10 more easily than a specific word.      

There are other ways to bring the brain back online as well: Scrabble, Monopoly, cribbage, backgammon or any other game requiring some counting, but are not overwhelmingly complex.

Jigsaw puzzles, origami, scrapbooks, photo collections; anything that requires organizing visually can also be useful. If you have enough mental energy for it, small amounts of foreign language study can also do the trick. Many public library systems have easy and free courses you can use online.

These ideas seem really simple, I know, but that’s exactly where to start. Really easy and really simple.

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.

CNN Gets It Wrong About Pain Patients

By Sarah Daniels, Guest Columnist

You may have seen last night’s CNN town hall meeting on “Prescription Addiction: Made in the USA.”

I couldn’t believe it when Dr. Drew Pinsky said that real compliant pain patients are “a very tiny minority” of prescription opioid users.

I’m so sick of being grouped in with addicts! Because of all the new CDC regulations, I had to go weeks without my medication after being on high doses of opiates for a long time.

No one would give me my medication. Every pharmacy I went to said they were out. One pharmacy had the medication and was getting ready to fill it when the head pharmacist came over and told me unfortunately they wouldn't be able to give me the script. When I asked why she said they didn’t have it. I explained I was told they did and it was being filled. She said it wasn’t enough.

I asked if my doctor could write a different script for a temporary amount, would they be able to fill it and she just handed it back to me saying, "Like I said, I’m sorry, I can’t help you."

Then I went to a hospital pharmacy that did have the medication and they actually told me they needed to save it for patients who had short-term pain like surgeries for broken ankles. When I asked how someone's broken ankle pain was more important than my chronic pain from my genetic illness they asked me to quiet down and leave. If I didn't they would have to call security.

I was being polite and respectful, because I know as a pain patient you have to be the best advocate you can be, especially with all the stigma attached to opiates. I was also being quiet because I am never loud when discussing my pain meds, as you never know who is listening.

I never fight or argue or really raise my voice with anyone. I am a happy person despite my illness. I am grateful and thankful for each day I wake up and am able to spend with the people I love.

I did not appreciate someone making me out to be a completely different person than I am. It was like they actually felt threatened by me. Give me a break. I was in a wheelchair.

Now I’m not able to find the medication. My doctor wrote me a script for the medication because we have both decided it is the only thing and best thing for me to be on. It gets me out of bed and still, I can’t get it.

Now I am forced to go to a new pain clinic with new meds, where they're making me stop medical marijuana, which is the only thing keeping me from a feeding tube. They are making me come in for a visit once a week and each week I have to get drug tested and get labs drawn which costs $16. The visit itself costs $35.

SARAH DANIELS

They also want me to see a pain psychologist twice a week (who I already saw with my previous pain specialist and was cleared by). God only knows what that costs.

I’m on disability. It barely covers my insurance and yet I have to do all of these things to be compliant. I have to come up with the money for all of these appointments and procedures, find someone who will be able to drive me, as I am disabled and cannot do so on my own, and also be  well enough to even leave my house to make these appointments, just so that I am considered compliant. So that I can take a medication that I’m not sure will even work.

I am just disgusted by what is going on. As pain patients we are left in the dust. Nobody stands up for us. We try to stand up for ourselves, we are pretty strong, but we need bigger louder forces on our side.

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

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.

Wear, Tear & Care: Media Hysteria and the Opioid Crisis

By J.W. Kain, Columnist

I recently received this email from a family member:

Hi Jen,

I was listening to a thing on pain medication and why prescription meds are so dangerous. They turn the receptors off in the brain and the person forgets to breathe.  That part is a totally separate thing from the pain. Dr. Sanjay Gupta was on talking about it. I think that is a very valid argument about overuse of pain meds.

For example, Prince had very valid issues to use the meds and also lived a very clean life style. If he overused, it goes to follow that someone who doesn't lead a clean lifestyle is in more danger. It's not the meds as much as the brain receptors. The breathing part is scary. So I'm not such an advocate anymore.....unless you can tell me this isn't true and why he would say that.

I love you and don't want anything to happen to you. Xoxoxox

I got mad after reading that, even though I knew she was coming from a place of love and fear. It didn't take long for me to calm down because I saw the bigger issue.

First off? Yes, those claims are true. They are also massively simplified. Heavy pain medications slow down or impair bodily functions. You’ve seen those opioid-induced constipation commercials. That is why only a select few of the chronic pain club gets high-voltage pills for daily life as opposed to post-surgical pain.

Here’s a great quote from WBUR’s interview with Dr. Howard Fields that explains the difference between addiction and dependence, the latter being what most chronic pain patients experience:

“Addiction really gets to the issue of compulsive overuse of a drug so that it becomes the dominant thing in your life. If you are going to your physician once a month and getting your prescription refilled and you are able to lead a normal life by taking a pill maybe three or four times a day, you’re not addicted.

But if you’re spending all your time in the search of a drug, or trying to get the money to buy that drug, or stealing from your friends, or going around in other people’s medicine cabinets looking for opioids, then you’re addicted.”

My view of this increasingly volatile situation is that opioids — which the majority of pain patients use responsibly — cannot be banned without another medical intervention in place. Yet some pain management clinics are declining to prescribe opioids.

So what’s fueling this explosion of insanity?

Welcome to the opioid crisis media extravaganza. There is currently a media blitz surrounding the national opioid crisis:

• A doctor in Buffalo was indicted and closed his practice, leaving thousands of his patients without access to pain medication.
• A California doctor was convicted of murder for writing too many prescriptions (and to be fair, that case was pretty shady).
• The late pop icon Prince died after allegedly overdosing on opioids (though few talk about his chronic and debilitating pain, a condition that is “criminally under-treated”).

Many, many people have overdosed and/or died. That is undeniable and is certainly a problem. But the national reaction has not been the appropriate response. The CDC guidelines that discourage doctors from prescribing opioids gloss over pain patients like we don’t exist and only add to our desperation. A former FDA commissioner even slanders us.

So many patients are doing everything right — exercise, strength training, meditation, deep breathing, over-the-counter pills, medical marijuana, aqua therapy, physical therapy, chiropractic work, Reiki, crystals, and anything they see that makes a vague promise to help.

Pain can drive sufferers to extreme lengths, be it suicide or illegal drugs like heroin. Patients are far more likely to turn to street drugs if there is no access to proper pain medication. Or, you know, when pharmaceutical companies outright lie about the addictive natures of their pills.

It's coming out in the news more steadily now, but the rumblings have been around for several years. The opioid crisis may have started partly because OxyContin, “a chemical cousin of heroin,” had addictive qualities and yet was prescribed with abandon.

Purdue Pharma reps went to doctors and told them their pill wasn’t addictive and lasted for twelve straight hours!

In reality, OxyContin presents a serious end-of-dose failure. This is when a drug says it will quiet pain for twelve hours, but in reality only works for eight. This causes patients to take additional pills or stronger ones, which can lead to overdose and addiction.

A four-hour gap? What did Purdue expect to happen?

The knee-jerk reaction to the crisis is to limit the prescriptions of opioids. What does this do to pain patients? It leaves many of us without access to pain management methods that the majority of us have not abused.

Doctors tell sobbing patients that long-term opioids are usually not the answer. But they are the answer for many patients who literally have no other options beside being bed-bound or dead. Those patients are now in grave danger of being driven to extremes. Like that one awful guy who ruins things for everyone else, there have been patients who’ve abused their health care regimens. Sometimes they can’t even help it, like so many of those OxyContin patients who were lied to.

Many of us have to sign pain contracts before we can even dream of receiving opioid prescriptions. These state that our pills are doled out in certain quantities over a set period of time and that they cannot be replaced, supplanted, or in any way refilled for one month. If we lose them, if they get stolen or if the world explodes, we cannot get more.

We have to get new prescriptions in writing every month. The hard copies have to be delivered to the pharmacy. Our driver's licenses must be presented to the pharmacist so they can track our pill usage. Then, and only then, do we receive our prescriptions.

Tell me: Why on earth would we jeopardize that? Most of us are responsible. We don't overuse what we have. We know we can't, or we’re cut off.

A lot of people say, “You’ll end up hooked." The medication will change our brains to make us need, need, need, and we will do anything to fill that need.

And yet, both I and other patients in my support groups, online chats, and frequent fliers at the doctor’s office time our prescriptions and take them exactly when due. We pair that with every other over-the-counter intervention we can think of, like wearables, pain patches, creams, and braces. We can’t rely on opioids because they might disappear at any moment.

The current approach to battling the opioid crisis lumps pain patients with true addicts, and it skews the statistics. I’m not naïve enough to say that some addicts didn’t start as pain patients. I know some did. But in my entire decade-plus in the medical system, I personally know of only one person who started on pain medication and ended up in rehab. I know a few more online, but I can count them on one hand.

My fundamental message here is that unless the proper education is provided, even your biggest supporters — your family, your friends, your colleagues — might react to the media hysteria without doing research that contextualizes the data. They might read a tweet or a headline and react out of fear. Stories will keep being conflated.

They might even send an email like the one sent to me. They only mean the best, but it adds to the collective national fear that is leaving thousands upon thousands of pain patients without the treatment we need.

Prohibition didn’t work in the 1920s. This version of Prohibition isn’t going to work either. The sooner we as a society come to that conclusion, the better.

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

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

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

Seeing Both Sides of the Opioid Debate

By Crystal Lindell, Columnist

I have suddenly found myself on both sides of the opioid issue.

I’m a chronic pain patient who is among the lucky few to have gotten better, or at least mostly better. And now, I’m so “lucky” that I get to take myself off opioids. It’s been hell.

I had this idea in my head that it would be like in the movies — 72 hours of feeling like death and then I would go on with my life. But it turns out even after your physical body adjusts to life without the drugs, your brain aches for them and begs you to take them.

I have it on good authority — a psychiatrist at a university hospital who specializes in this sort of thing — that I was never classically addicted to the morphine and hydrocodone that I took on a daily basis for my intercostal neuralgia. I never took more than the prescribed dose. I never took them to get that “high” that can come from the drugs. I never bought any off the streets.

I took them for pain. As prescribed. And I passed every stupid urine test they ever gave me. If they gave out grades for taking opioids correctly, I’m not saying I would definitely have an A+, I’m just saying I probably would. 

But when you’re on morphine 24 hours a day/ seven days a week for three years straight, your brain doesn’t much care why or how you took them, it just wants to know why the heck you stopped.

And so even after the initial diarrhea and the sweating and the body aches subsided, my brain was left in shambles. And I was hit with horrific, lingering crippling anxiety and insomnia.

It turns out there’s this thing called post-acute withdrawal syndrome, or PAWS. And first it should be noted that they really didn’t take things typically associated with puppies and use them to name ugly, terrible withdrawal-related issues. But whatever.

Anyway, as you go off certain drugs, like opioids, “Post-acute withdrawal occurs because your brain chemistry is gradually returning to normal. As your brain improves the levels of your brain chemicals fluctuate as they approach the new equilibrium causing post-acute withdrawal symptoms,” according to an article on Addictions and Recovery.org.

“Most people experience some post-acute withdrawal symptoms. Whereas in the acute stage of withdrawal every person is different, in post-acute withdrawal most people have the same symptoms.”

And the symptoms can last for two years.

Here’s is a list of symptoms from that article:

• Mood swings
• Anxiety
• Irritability
• Tiredness
• Variable energy
• Low enthusiasm
• Variable concentration
• Disturbed sleep

I have all of them, if you were wondering.

The anxiety and insomnia are a special kind of hell, because they don’t even let you escape with sleep for a few hours a day. You’re just awake, all the time, wondering if the world is actually going to end right then.

And you know in your mind that the anxiety isn’t logical. You know that just because the guy you’re seeing has read your text message but he hasn’t immediately responded to it doesn’t mean he’s met someone else and gotten married to her in the last seven minutes.

But anxiety doesn’t give an eff about logic. So your heart rate ramps up and you feel sick to your stomach and you convince that if he would just TEXT YOU BACK it would all be fine. And then he does, but it’s still not fine. Because it’s never fine.

Possibly most depressingly of all, I’m struggling to write. The anxiety convinces me that I have nothing important to say and nobody would want to read it anyway, and that anything I type has probably already been said better by someone else. It paralyzes me, and takes away the one thing in life I have always been able to count on. And getting this very column out has been an exercise in sheer will.

So yeah, it’s been awful. And most of the doctors I’ve been working with truly believe that since the drugs are technically out of my system and I wasn’t an “addict,” that I should be super awesome and totally good to go. Except I’m the completely opposite of that, and I’m really struggling with all this.

The worst part might be that dealing with withdrawal has so many ties to morality in our culture, so every time I have an anxiety attack and I reach for half a hydrocodone to calm me down, I feel like I failed at life. I feel like I went from A+ to F-.

The thing is, even with all this hell, I still don’t regret going on morphine three years ago. Back then I was in so much pain that I was genuinely planning ways to kill myself and the opioids were the only thing that helped me. They not only saved my life, they helped me keep my job and stay somewhat social.

But now, as I try to get my brain back to normal, I’m struggling. Like I mentioned, I’m working with a psychiatrist and psychologist and I have also recently made the decision to go on anxiety medication and try sleeping pills.

I still wake up in a state of panic more days than not though. I feel like something horrible is going to happen at any moment, and feel lucky if I get five hours of sleep in one night. So it’s not like I’ve found a magic cure.

The bottom line is it’s time we all admit how incredibly complicated opioids really are.

On one side, people in pain deserve access to them. Quality of life is important and nobody should have to suffer because of mass hysteria about hydrocodone. 

But we can’t ignore the fact that no matter how responsibly we take these drugs, our brains get addicted to them over time. And stopping them isn’t as easy as a 72-hour withdrawal weekend.

Doctors need to know these things, and then they need to relay them to their patients. And only when we have an honest conversation about the benefits AND the risks associated with these drugs can we begin to move forward in a productive way.

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.

Making Everyday Life Less Painful

By Barby Ingle, Columnist

Every day is a challenge to remain independent when living with chronic pain. Normal activities such as walking, taking the stairs, squatting, sitting for long periods, and getting in and out of vehicles can be quite challenging and painful.

To get more out of life, I had to learn how to minimize disruptions in my daily routine and how to be a time and energy saver. That meant making some changes around the house.

Every pain patient and their family should assess their surroundings, perhaps with the help of professionals, and prioritize the modifications needed. This can help the patient maintain their independence and function.

Some of the lifestyle modifications you may wish to consider include: 

 Clothing

•  Flat shoes instead of heels for patients with lower extremity issues
•  Slip-on shoes
•  Velcro or zipper closures for shirts or sweaters
•  Velcro or zippers for shoes instead of shoelaces

 Bathroom

•  Elevated toilet seat
•  Grab bars in the bathtub, shower, and next to the toilet
•  Long-handled comb or brush so the patient does not have to raise his or her arm high
• Tub or shower bench 

Bedroom

• Blanket support frame so that blankets or sheets do not rest directly on the feet of a patient
• Nightlights in the bedroom and other rooms where the patient may walk if they awaken during the night

 Automobile

•  Car doors that are easy to open and close
•  Handicapped parking stickers
• Modified controls to facilitate driving
•  Seat positions that are easy to manipulate

Kitchen

• Easy grab handles for cabinets
• Large knobs on appliances requiring manipulation (stove, dishwasher, washing machine)
• Lightweight appliances (vacuum cleaner)
• Lightweight dishes and pots
•  Lightweight flatware with long handles
• Long handled cleaning appliances (brooms, dustpans, sponges)
• Long-handled "grabbers" for removing items on high shelves or picking up items from the floor
• Sliding shelves or turntables on kitchen shelves so the patient does not have to reach into cabinets to access items in the back 

Miscellaneous

• A note from your doctor recommending special accommodations, such as an aisle seat in airplanes
• Electric wheelchair to avoid upper body strain or injury
• Medical support professionals or accountants to budget medications, special appliances, home-nursing care, and other medical-related supplies and expenses
•  Nursing or home health care
• Use of wheelchairs in airports, train stations, or malls
• Voice activated lights, appliances, or computer
• Wheelchair-access modifications at home

Undoubtedly, there has been progress made in recent years by healthcare professionals and patients towards understanding and properly managing pain. Unfortunately, pain still poses a problem for patients who are under-diagnosed, over-diagnosed or misdiagnosed.

Controlling the pain you are in is essential to quality of life. Knowing the characteristics of pain and why it is happening give you an advantage in dealing and controlling aspects of pain. Taking control of your life and being responsible for yourself will assist you in lowering your pain.

I see these life changes as a way to improve my daily living -- not as defeats. Using tools in life help those with disabilities from pain have a better life. If a tool can help us accomplish more and increase independence, we should not be ashamed of using 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.

Stop Attacking Chronic Pain Patients

By Jaymie Reed, Guest Columnist

Last week I had one of the most horrifying experiences ever. I was called and told to be in my new pain doctor’s office within 4 hours for a pill count.

You see, my own body is attacking itself, eating away the covering from the peripheral nerves in my arms and legs. I have Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and it is very painful. I need opioid pain medication to treat that pain.

It was humiliating to sit in the doctor’s office waiting for my pills to be counted and my urine screened for the second time since I became a patient there. I felt my blood pressure rising and asked the nurse what it was. I was told it was 193/108.

Shakily, I asked, “What did I do wrong? Why did I have to come in here?”

The answer: “The DEA is breathing down our necks, so we have to do this!”

To myself I was thinking, “Why do I have to trade my dignity for healthcare so I don’t have to live in pain? Why are they making me feel worse and adding to my stress?” 

What ensued that day has prompted me to try and turn up the volume for chronic pain patients and what they have to deal with every month. Having to choose between pain, dignity or quality of life, such as being able to cook a meal, go to your child’s school event, or even making it to work, is a choice that none of us ever dreamed we’d have to make.

JAYMIE REED

The DEA, CDC, Congress and the lobbyists’ war against opioids has intimidated most all medical professionals to the point that many are choosing to avoid treating their patient’s pain because of the scrutiny they face. Just the additional record keeping the DEA requires for opioid prescribing makes it unprofitable, so some doctors simply jump ship and refer patients to the pill counting and urine screening protocol of a pain management specialist. The next stop after that is often an addiction recovery center.

Your own doctor should be the one person you can count on, but when we ask why and get the stock DEA answer, you feel lost. There has to be a better way because the war on opioids only adds an insurmountable amount of stress and worsens our pain levels, not to mention the added financial cost.

As the days go by, watching the war against opioids get nearly as much media coverage as Donald Trump, it’s become increasingly clear someone has an agenda. One possibility might be the lobbyists’ interests, which are often focused on increased funding for addiction treatment.

Will sending chronic pain patients to addiction centers be a solution or will it be responsible for a rise in the death toll? Any doctor will tell you a person in REAL pain won’t be helped by 30 days of counseling.  But, we are told the government requires it, all because of the witch hunt a few congressmen and lobbyists have created.

According to the CDC, the top 10 leading causes of death in the United States are

1. Heart disease: 614,348
2. Cancer: 591,699
3. Chronic lower respiratory diseases: 147,101
4. Accidents: 136,053
5. Stroke: 133,103
6. Alzheimer's disease: 93,541
7. Diabetes: 76,488
8. Influenza and pneumonia: 55,227
9. Nephritis (kidney disease): 48,146
10. Suicide: 42,773.

So the 18,893 overdose deaths in 2014 related to opioid pain medication don’t even make the top ten leading causes of death. Neither does the 10,574 overdose deaths related to heroin and other illegal drugs. Those numbers are concerning, but the real picture isn’t being painted.

Why do the mainstream media keep saying that opioids are a leading cause of death? Why are chronic pain patients made to feel like having an opioid prescription is equal to owning an assault rifle? No one in the media asks to hear from actual pain patients. And no one wants to know that thousands of chronically ill people like me are being treated like criminals by their own doctors.

The life of a chronic pain patient today is dreadfully frightening. Try visiting a pain management clinic and see if you could live your life that way. Searching the streets for drugs or finding a burial plot has never been a thought for me, but for some of us in pain they become an option when the only alternative is being treated like a prisoner in a recovery center. 

When the pain sets in with little or no medication, then the streets (if you can get there) or that burial plot start looking pretty good.  The news media needs to hear our voices and help end the attack on pain patients. 

Is anyone listening?

Jaymie Reed lives in Texas.

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.

How I Learned to Handle Chronic Pain

By Emily Ullrich, Columnist

It occurred to me the other day that I’ve come a long way since my initial chronic illness set in. It has been a rough journey, but overall, I feel myself to be “improved.”

I have more self-esteem. I am more positive emotionally and spiritually. And I am far better at handling my multitude of symptoms than I was.

I went through complete and utter Hell, but came out of it, and I think it is really important for people who are new to chronic pain and for those who are really struggling to know that it will get better.

Let me be clear. I am not saying, “Don’t worry, it’ll all straighten itself out and you’ll be back to your old self in no time.” I am absolutely not saying that. But, I am saying if you work, learn, and lean into it, it will get better—at least you will get better at handling it.

I think every so often it is important to assess yourself, your goals, your progress, your changes, your heart, where you are, and where you need to go. When you develop chronic pain, these goals and dreams have to be adjusted.

In 2011, I returned to the United States a shell of a woman. My overly ambitious goal to start a film school and a new life in Kenya had not worked out the way I had imagined. Worst of all, I kept getting sick, and finally I had to put my tail between my legs and go home to momma, in Kentucky.

I woke up on my very first morning back on American soil screaming in pain. I had a kidney stone. It was some kind of divine intervention that this pain held off over the 25 hour flight, and the days before I left Kenya, because there’s no way I could have handled it or found help.

EMILY UlLRICH

This was just the beginning of a slew of chronic illnesses, diagnoses, misdiagnoses, doctor and hospital visits -- so many that they flow into one another and overlap in my mind -- and an ambush of tumultuous emotions, all of which would be a nightmare for me and my poor mother, for the next three years or so.

From the time the kidney stone stirred a commotion in my body, the pain changed, and it never really went away. It became chronic pelvic pain, then fibromyalgia, migraines, and a flare up of malaria returned after I had one of many endometriosis surgeries.

At the time, I did not have health insurance, and in Kentucky, a single woman without children could not get Medicaid. The main suggestion for my condition was the Lupron shot, which cost $700 over the internet through a Canadian pharmacy, the only possible way I could afford it.

It would put me into early menopause, which I really did not want. The shot would only last six months, and then I would have to come up with another solution.

All of this was overwhelming. Worst of all, I had to see about 15 gynecologists and make endless ER visits with uncontrolled pain, before finally someone suggested a pelvic pain specialist to me. He was the first person to tell me that this was not normal. Most every doctor before him had told me it was normal to have some degree of “female pain.”

In the days and months that passed, I tried to hold onto my job as a professor in Cincinnati, which was not a short commute. I was put on so many different medications (hormones, steroids, tricyclic antidepressants, fibro medications, antidepressants, benzodiazepines, pain meds, NSAIDs, the list goes on) that I found out the hard way that I am allergic to a lot of them!

My own doctor told me to lie to the government and say I was pregnant, so I could get Medicaid, and then say I had a miscarriage and get the Lupron shot. He also told me it was time to stop working. I cried to him. I cried to my mother. I cried to myself.

Meanwhile, I was having so many different reactions from the medications, I would be up all night, muscles twitching, grinding my teeth, restless legs kicking out of control. Every day, I woke up expecting to feel better, only to be disappointed. I would be so tired I could sleep for days. My entire body and mind were highly agitated to the extreme.

I did not yet grasp the concept of chronic. I knew the word by definition, but had no idea what it meant as it applied to my life.

Now, after endless doctor visits and hospitalizations, I am doing better. I am not better physically, in fact I have FAR more problems and diagnoses than I did. But, I’ve become a medical research specialist, and have been lucky enough to be affiliated with numerous pain organizations, support and information groups. I’ve started speaking out and advocating, which gives me strength. I’ve married a kind, supportive, understanding, empathetic, and wonderful man.

I have a handful of doctors I trust, and one -- my pain doctor, who I’ve only been with for a few months -- is an absolute angel who actually cares about my pain.

I am a work in progress, but I know I am making progress, and that’s what counts.

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis,  Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, anxiety, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the International Pain Foundation, as she is able.

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.

Will CDC Opioid Guidelines Help Reduce Overdoses?

By Lynn Webster, MD, Guest Columnist

Politicians and some government officials tell us that the new CDC opioid guidelines will reduce deaths due to overdoses. But, based on the evidence we’ve seen so far, that is unlikely.

The latest CDC report shows a continual increase in opioid-related overdose deaths despite about a 25% decrease in the number of opioids prescribed.  This data demonstrates that an absolute reduction in opioid prescribing hasn’t resulted in the intended outcome – so far, at least. It may be counter-intuitive, but I think you’ll understand why in a moment.

The problem is more complex than the lawmakers, CDC, and regulators would have us believe. Simply reducing the amount of opioids prescribed will not necessarily affect overdose death rates as you might expect. In fact, it might do just the opposite.

What happens is that, when we reduce the amount of opioids that are prescribed, we force many of those with opioid addictions to switch to illegal opioids such as heroin and synthetic fentanyl, which are far more dangerous than prescription opioids.

If the amount of opioid prescribing were reduced dramatically, it would likely reduce the number of deaths from prescription opioids. But there would almost certainly be a significant increase in abuse of other drugs. That could result in more overdoses than we’re seeing now. We’ve already seen more deaths due to the increased use of heroin, but heroin is only one of many illegal drugs that can be abused.

Reducing the supply side of the addiction problem does not address the demand for opioids, nor does it help address the needs of people with the disease of addiction.

Of course, additional “collateral harm” can occur with people in pain who benefit from opioids, and it is unacceptable to any person with compassion. Denying prescriptions to people who have been benefiting from opioids is a misguided attempt to save the lives of people with opioid addictions at the expense of people with pain.

People with pain will suffer, and that suffering won’t save the lives of people with addictions who turn to illegal substances. Additionally, in all likelihood, we will see an increase in suicides from people who just cannot live with their level of pain.

There are about 104 suicides per day (compared to 44 opioid-related overdoses per day). In my opinion, intractable pain is a contributing factor in many of these suicides. I suspect that, as we see more and more people denied opioids for their pain, we will see an increase in the number of suicides. I base this on my experience of seeing many patients commit suicide in my practice despite having access to all of the available treatments.

Severe pain is not always compatible with choosing to live.

Reducing deaths related to over-prescribing opioids would be a good thing and must be a priority. But, if we want to reduce the amount of opioids prescribed for people in pain, then we must provide them another, safer way to handle their pain.

Trading opioid-related deaths for either death related to illegal drugs or to suicides because of pain, is not an acceptable solution. We need something better to offer people in pain, and we need it soon.

Lynn R. Webster, MD, is past President of the American Academy of Pain Medicine, Vice President of scientific affairs at PRA Health Sciences, and the author of “The Painful Truth.”

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

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.

Don't Flinch From Prescribing Pain Medications

By Forest Tennant, MD, Guest Columnist

By now chronic pain patients and practitioners are well aware of the new Center for Disease Control and Prevention (CDC) “Guidelines for Opioids for Chronic Pain” released on March 15, 2016. Although these guidelines have been, and will continue to be, strongly criticized for the process by which they were created, they are now published.

One of the often stated goals of CDC, despite widespread skepticism from many pain specialists, is that they did not want to limit access to pain care. Let’s take them at their word.

A major “bone of contention” regarding the guidelines is the recommendation that a daily dose of opioid should seldom go over 90 mg equivalents of morphine a day. In the CDC’s words:

“Clinicians should use caution when prescribing opioids at any dosage, should carefully reassess evidence of individual benefits and risks when increasing dosage to 50 morphine milligram equivalents (MME) or more per day, and should avoid increasing dosage to 90 MME or more per day or carefully justify a decision to titrate dosage to 90 MME or more per day.”

Thankfully, few chronic pain patients require more than 90 MME for pain management. Be alert, however, to the fact that 90 MME in the guidelines is not a maximum ceiling dose but a “trigger” or “call” for a medical-necessity evaluation, including a possible consultation or referral to a pain specialist.

My personal objection about all the new opioid prescribing guidelines, including CDC’s, is that they seem to want all patients on high-dose opioids to be managed by pain specialists rather than primary care physicians (PCPs).

Unfortunately we don’t have enough pain specialists to medically manage these legitimate, suffering patients who can’t function or leave the couch without an opioid dosage above 90 MME.

While the intent of the CDC to have the most serious pain patients managed strictly by pain specialists may be laudable, this won’t solve our nation’s epidemic of untreated and undertreated chronic pain. Incidentally, the new guidelines rightfully mention all the risks of high-dose opioids, such as addiction, diversion, and overdose; but they wrongfully fail to mention all the serious, life-shortening, and physiologic impairments that are the risks of undertreated, severe, chronic pain.

Sadly, without opioids, some of these unfortunate individuals will suffer immense physical dysfunction, endocrine failure (see Hormone Testing and Replacement), cardiovascular collapse, immune dysfunction, dementia, and premature death.

This memo is a plea to not discharge severe pain patients who are currently taking over 90 MME or avoid and deny patients who may need this level of opioid in the future. Be aware that the CDC guidelines do not prohibit dosages over 90 MME—what they rightly recommend is that physicians do an assessment and document medical necessity for dosages above that level.

Here are my personal practice policies and recommendations for dealing with past, current, and future patients who require over 90 MME:

The pain practitioner has to clearly state, in the patient’s chart, that the patient has severe chronic pain due to a specific underlying cause. For a patient to receive high-dosages of opioids, the physician must obtain and document the history, relevant physical exam, laboratory data, informed consent, and past records of treatments that have been tried.

Opioids should not be prescribed in isolation. Rather than just continuing to increase the dose, the physician needs to revisit what other modalities are being used or have been tried. These include: non-opioid medications such as an anticonvulsant if the pain has neuropathic elements, (being certain to titrate up to an effective dose); a topical medication such as Lidoderm patch, Voltaren gel, etc.; a physical therapist-guided home exercise program and other physical activities, including massage; consultation with an interventionist if appropriate; assessment and treatment of co-occurring anxiety or depression.

The new guidelines, in my opinion, could worsen a growing problem of access to medication. Already, in some locales, patients can’t obtain prescriptions and insurance companies don’t want to pay for opioids (or much else!!). If patients need a high, costly opioid dosage, they must personally determine the limits of their insurance coverage and identify pharmacies that will supply opioid medications.

We physicians can help but none of us has the time or influence to help every pain patient with his or her personal supply of medication and insurance issues. Simply stated, a patient must be an active rather than traditional, passive patient: pain patients must now join advocacy groups and begin to lobby for their right to obtain opioids and avoid an agonizing existence and premature death.

Millions of chronic pain patients now take opioids responsibly and constructively. While opioids aren’t for everybody, many pain patients who are taking high-dose opioids have enhanced their overall health, achieved a decent quality of life, and have likely extended their life span. These patients don’t abuse, divert, or overdose on their opioids, and they don’t develop hyperalgesia or the need to continually escalate their dosage. Isn’t it time we pay as much attention to these worthy folks as those who non-comply, abuse, and overdose?

Dr. Forest Tennant is pain management specialist in West Covina, California who has treated chronic pain patients for over 40 years. He has authored over 300 scientific articles and books, and is Editor Emeritus of Practical Pain Management.

This column is republished with permission by Practical Pain Management, which featured the opinions of several other practitioners on the CDC guidelines this month. You can see them all by clicking here.

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.

Pain and Addiction Should Be Treated Separately

By Emily Ullrich, Columnist

Once again, the lack of humanity, honesty, and desire to provide quality pain care to patients on the part of doctors, hospitals, and medical and government organizations has astounded me.

Andrew Kolodny, MD, the founder and Executive Director of Physicians for Responsible Opioid Prescribing (PROP), whose name seems to be six degrees of separation from all movements to thwart proper pain care, has submitted a petition asking Medicare to stop requiring hospitals to survey patients about the quality of their pain management.

A group of U.S. senators has gone even further, introducing the PROP Act in Congress, which would prevent Medicare by law from making "any assessments" of pain in hospitalized patients.

As I and others have written, pain is not merely discomfort. It is unhealthy and can even be life-threatening. If a patient is left in severe, unattended pain during a hospital stay, their acute pain can become chronic, triggering a host of other medical problems, such as high blood pressure, impaired immune function, ulcers, rashes, anxiety and depression. So, reporting one’s pain care while hospitalized is essential to the outcome of healing.

But, according to Kolodny and others who signed his petition, asking patients about their pain care leads to “dangerous pain control practices” and “aggressive opioid use.”

My question is, since patient surveys have contained pain evaluating questions for years, where is the evidence that doctors have over-medicated patients so their hospitals will have satisfactory survey ratings?

My guess is there is none. I have been hospitalized and suffered untreated or undertreated pain many times. I not only filled out surveys, but called hospital administrators, wrote the Joint Commission for hospital accreditation, and more, and STILL received sub-par pain care from doctors.

I am not alone. A recent survey of over 1,200 patients by Pain News Network and the International Pain Foundation found that over half rated the quality of their pain care in hospitals as either poor or very poor.

My next question is why doesn’t Kolodny want people to know about our pain? I suspect I know the answer.

As mentioned earlier, Kolodny can be traced back to nearly every movement to intervene in the proper medication of pain patients. In addition to running PROP, he is chief medical officer for the addiction treatment chain Phoenix House, and seemingly has an elaborate plan to have every patient on opioids be treated as an “addict.”  

This brings me to one final question. Why doesn’t any major American media outlet look into the conspicuous ulterior motives of Kolodny, PROP and Phoenix House? I am not much on conspiracy theories, but at this point I am compelled to say there might be something there, but our government and society are already so brainwashed to associate pain with addiction that no media outlet will touch it. Not to mention the political funding and special interest groups that also have a stake in this.

It all boils down to money. Healthcare in this country is treating pain on a financial hierarchy. The Obama administration has bought into the CDC guidelines on opioid prescribing, and the passing of the PROP Act will only further the notion that pain and addiction are one in the same.

Despite what we are being told, pain and addiction are two different issues, which need to be addressed separately. If this havoc wreaking discrimination continues, there will be no such thing as pain care left in this country.

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, Endometriosis,  Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, anxiety, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the International Pain Foundation, as she is able.

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.

Learning Mindfulness and a Positive Attitude

By Barby Ingle, Columnist

Mental health can be disrupted when living with chronic pain. Anxiety, depression, isolation, and feelings of hopelessness and helplessness can increase to dangerous levels. Life can become overwhelming -- particularly for people who have been suffering with chronic pain for a long period of time. The idea of living with this horrible disease with no cure is astounding.

When my chronic pain started doctors often told me, “Just do this and you will be okay.” I would build up my hopes and follow their directions. But when I did not get better, I came crashing down and so did life around me.

When I finally realized there was no cure for my chronic pain and that my future would include pain on a daily basis, I began to have dark thoughts. I went through a grieving process in the course of coming to grips with my new reality. It is hard for many pain sufferers to accept their changing life, and the loss of independence and function.

It is very important for you and your family to recognize the symptoms of diminished emotional well-being and take action or you may end up at risk of suicide. There are going to be good and bad days, and if this is a bad day for you, remember to focus on the good days, good feelings and positive past and future experiences.

It was when I began looking for solutions, and displayed a positive attitude, self-esteem and confidence, that I began to attract other people who wanted to help me accomplish my needs and goals. Be sure to surround yourself with a team that is on your side, or you will be in a fight in which you will have trouble winning.

Creating a positive attitude starts with being inspired. You can begin by finding new interests and hobbies you can enjoy. A few suggestions are joining a non-profit cause, solving puzzles, writing a journal, joining or starting a support group, or even starting a blog. Creating a purpose can assist with your self-esteem and confidence.

I have learned that every person has a value no matter how big or small they seem. Believing in yourself and in your abilities, choosing happiness and thinking creatively is good motivation when it comes to accomplishing your goals. Learn to expect success when you are going through your daily activities. It might take you longer or you may need to use more constructive thinking to achieve success, but it is possible. 

There are great benefits to having a positive attitude, especially when things are not going your way. Staying optimistic will give you more energy, happiness and lower your pain levels. Success is achieved faster and more easily through positive thinking, and it will inspire and motivate you and others. I have found that when I am letting the pain get the better of me, it comes across to others as disrespect and brings those around me down.

No matter the challenges of today, they will pass, and will not seem as bad as time moves on. Challenges often turn out to be a bump that looked like a mountain at the time. You can be mentally positive and happy even when there are large obstacles to overcome.

No person or thing can make you happy and positive. Choosing to be happy starts with mindfulness.  

You can learn about mindfulness and moving beyond psychological suffering in a free two-part webinar I’ll be hosting, featuring Dr. Melissa Geraghty on April 28 and Dr. Karen Cassiday on May 13.  You can register for the webinars and learn more about treatments for anxiety and depression by clicking here.

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 (iPain). 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.

Pain Companion: When Pain Hijacks Your Brain

By Sarah Anne Shockley, Columnist

I had a great inspiration for this article a couple of weeks ago and immediately forgot what it was. I exhausted myself, uselessly racking my brain for the idea I’d had. What was it I thought was so perfect to write for Pain News Network?

Several days went by with me trying to find the elusive idea. I couldn’t even figure out what it related to. It was as if it had completely left the universe and was utterly irretrievable. Gone without a trace.

Ever feel like that?

Studies have shown that chronic pain affects the brain, but most of us living with chronic pain don’t need researchers to tell us that. We live with brains that don’t seem to be firing on all cylinders every day. I don’t know if there is an official term for it, so I’m just calling it “Pain Brain.”

In this and my next column, I’ll discuss some of the ways in which Pain Brain affects our ability to cogitate -- and some practical ways I’ve found to live with it a little more gracefully and even to coax the brain back online.

Dealing with Blank Spaces        

Do you find yourself in the middle of a sentence and can’t remember what you were talking about? Sometimes can’t come up with the words for even the most common items like chair, book, pen? 

We worry that we might be getting Alzheimer’s and sometimes find ourselves very embarrassed when, in the midst of telling someone something important, our brains simply turn off.

We’re left with our mouths hanging open in mid-sentence, whatever we were just talking about an utter mystery to us. We draw a complete blank. Sometimes it’s just a word, but often it’s the whole concept. Just gone. This can be extremely disconcerting.                                    

I find, particularly when I’m tired, that I’m creating sentences with a whole lot of blank spaces in them. “Can you hand me the... the... the... the... you know, I mean, uh... the… the... the.....” You’ve probably done this too.            

Stop. Breathe. Relax. Laugh. Choose another word. Or just let it go and carry on without that word or even that idea. It’s not that your brain is dying, you’re in pain.            

I’ve found that it’s usually not all that helpful to exert a lot of energy to try and recapture the word I lost. I’ve found that my efforts usually don’t make a bit of difference. I can’t conjure up that exact word or thought no matter how hard I try - and I just wear myself out and get flustered.                   

Pushing your brain to get back into gear creates tension, and you don’t need any more of that. Trying to find the exact word leaves a longer silence in your conversation, and you get the deer-in-the-headlights look, and that’s when you begin to feel uncomfortable and embarrassed. You want to say, I’m not really stupid or senile or easily distracted, I used to be able to converse with the best of them!                   

Instead, just move on with the conversation. Usually, sooner or later, the words you need pop back in. Sometimes much later. Sometimes in the middle of the night. But that’s okay. If we can just be easy with it, it’s not that big of a deal. It’s usually more disconcerting for us than the person we’re talking with.

Dealing with Brain Freeze

There are times, however, when it’s more than a particular word that’s missing. For me, it’s often a total brain freeze. Everything comes to a screeching halt, usually in mid-sentence. I have no idea what I was just saying, what the topic of the conversation was, or what direction I was headed in.                  

It’s pretty strange, because you don’t lose the power of speech, you just have no idea what you’re talking about anymore. It’s like the part of your brain dealing with that specific subject goes on a coffee break in the middle of a sentence, leaving you kind of stunned by its complete lack of presence.

For friends and family members, you can make up a code word or phrase for when you’re feeling disconnected from your own brain. I often just say, Sorry, my brain just stopped. It’s short and to the point, and they’ve learned what it means. They either remind me of what we were talking about, or we move onto something else.                   

For other people who don’t know your situation, and if you find yourself embarrassed by your own stupefaction, you might try just changing the topic. It’s really strange, but the brain seems to be able to go somewhere else and work relatively well, just not where you wanted it to go at the moment.

You can also distract other people’s attention from your sudden silence by asking them a direct question such as, What were you saying a moment ago? Or simply, What do you think? If they have something they have to respond to, it usually diverts their attention from your blank stare.

If you refer to what they were saying indirectly, without having to remember exactly what it was they actually said, they will often fill in the blanks for you and help you back on track -- without you having to explain that your brain just stopped.

Living with Pain Brain can be challenging, but in my experience, those of us who struggle with it notice the blank spaces and lost words much more than anyone we’re conversing with.    

In my next column, we’ll talk about memory loss and lowered capacity to cogitate. I’ll have some suggestions for working with them as well.                                

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.

Maddening Advice: When the Dots Don’t Connect

By Pat Akerberg, Columnist

If I didn’t have a neurological pain disorder that defies resolution, I would scream out loud in frustration.  But talking and screaming are huge pain triggers, so I avoid them. 

You might be thinking that I want to scream because of the hundreds of horrific electrical pain spikes I endure all over my skull every day.  But that’s not actually why -- uninvited and uninformed advice are what makes me want to scream!

Not a day goes by that I don’t read some comment, hear of some off-the-mark advice offered, or field some intrusive advice myself.  You know the kind. 

It’s advice that’s given as if it holds the illumination of the brightest sage on the planet; and ought to be surrounded by a glowing halo.  Forget that it doesn’t fit the whole picture – the complexity of my medical disorder, pain, history or my own experience.

Oftentimes the suggestions and advice come in the form of simplistic, sweeping generalizations, with a hint of judgment laced with a black and white attitude.  If it worked for my aunt, then it will work for you – an improbable dot.

Sometimes it even comes with a hurled platitude or two for extra measure.

My personal non-favorite is the one that implies that we’re not given more than we can handle. The implication being that we just handle it then. 

“Just” is another pesky diminishing, misguided dot.

What if the reality is that some days we can and others we can’t, hard as we try?  Sometimes the right action in response to Yoda’s, “there’s no try, only do” is to not do.  

And I marvel at the pull yourself up by your bootstraps, take charge, buck up, get happy, and do something to help yourself variety of advice. Chances are some version of that is usually offered by someone who either never has or only temporarily had to live with pain, and not of the disabling kind. It’s the kind of “tough love” pep talk more fitting for enablers to deliver to an addict. 

But we’re not addicts; nor are we malingerers. 

These one-way, one-size-fits-all approaches are not motivational, considerate, or even pertinent in most situations. 

Is it so hard to believe that there are various physical activities, like exercise, cardio, yoga, bike riding, etc.,  that are simply too demanding to bear for some people with debilitating illnesses?

Contrary to the no-pain, no-gain notion, sometimes those very activities actually thwart improvement. I can personally attest to experiencing those setbacks, causing me to regretfully cancel my Y-membership.

To some, that translates to I am not trying hard enough and don’t want wellness bad enough.  Or that I am weak, succumbing to defeat. I can’t imagine anyone thinking that a person would prefer to live an impaired life voluntarily.  If I could get back to work, I’d be out the door in a heartbeat.

What if instead I know my own body, limitations, and my history better than someone else does?  What if I’ve learned from a disastrous, damaging brain surgery how to pay keen attention to my gut instincts about potential harm?

A friend of mine calls that honing skill his “Spidey” sense.  The best part is that you don’t have to be a super hero to have it either.  I suspect a few of us have developed it the hard way.

Growth and development comes in many forms -- not always external in nature.  Though we may not be exercising or running; there’s plenty of internal growth going on in will, courage and fortitude.

It’s how we carry on. 

Then there are the obvious suggestions that test anemic up against the unrelenting pain wallops that resist much of what’s out there to abate them. 

It might surprise some advice givers to learn that serious chronic pain sufferers laugh silly at the notion that Tylenol, Advil, a good vitamin complex, bottled water (yes, I was offered that one), a certain diet, or doing _______(fill in the blank) will relieve our pain. 

You’ve probably heard others just as ill-fitting or absurd.  None of those dots that plop can stop the neuropathic pain strikes relayed through my faulty central nervous system.

Once I heard a man tell other pain sufferers that they could not have possibly tried all of the potential pain treatment options out there, that no one could in their lifetime. 

Some sufferers have researched and lived with their chronic conditions for years, have seen dozens of specialists in multiple states, had multiple surgical procedures, and/or have taken an untold morass of medications – all factors the advice giver couldn’t have known or considered.

I do realize that sometimes people, even well intentioned, just don’t know what to say to someone who is suffering endlessly. 

But there’s actually no requirement that advice or suggestions be given, is there?  Support, the kind that connects, can be conveyed in so many practical, helpful ways based on the person’s actual needs.

Often self and other awareness can go a long way during difficult circumstances. I mean the pause of “until you’ve walked a mile in my shoes” kind of other awareness.  And the restraint of “err on the side of doing no harm” self awareness if you aren’t sure.   

People in pain are often misunderstood, maligned, barely listened to, or believed.  One of the greatest gifts someone can give to a chronic pain sufferer is their supportive presence.  A caring friend or family member simply willing to listen is balm for the spirit.

In the end, self care trumps unsolicited, disconnected advice.  Apparently today that involves tuning my Spidey advice radar up yet another notch.

Along with that comes the personal responsibility to do my best not to inflict the same unwanted practice on others.

Pat Akerberg lives in Florida. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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

Pain Pacifist: A Poem About Pain

"Pain Pacifist"

By Angelika Byczkowski

Pain warrior no longer,

I surrender,

give up the fight,

become a pacifist.

Pain is far too big,

too strong for me

to stand against,

curb or contain.

It spills over

the edge of my meds,

trampling barriers

of mind eroded

by long-sustained

assault, it gives

no pause, no rest,

no redemption.

I'm worn down,

too exhausted

to continue this

unending battle,

fighting my own

invisible torment,

running wild in

this broken body.

Dreams for the future

lie shattered, love

of life destroyed,

lost to pain, and

the way ahead

looks even worse,

I change my route,

try something new.

I declare a truce,

one-sided, still

it brings me moments

of gentle calm,

when a window

opens briefly,

gives me a glimpse

of possible peace.

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome and fibromyalgia. Until she was disabled by progressive pain and fatigue, Angelika was a high tech IT maven at Apple and Yahoo. She lives in California’s Santa Cruz Mountains with her husband and various 4-legged kids.

When pain isn't keeping her flat on her back, she spends her limited energy researching and blogging about chronic pain, EDS, and fibromyalgia at EDS Info.

Pain News Network invites other readers to share their stories (and poems) with us. 

Send them to:  editor@PainNewsNetwork.org. 

Pain and Parenting

By Barby Ingle, Columnist

A little over a year ago my brother and I published a book for children who have people in their life living with chronic pain. We both live in pain and he has children.

In preparing the book we did a lot of research on the language that children understand. For instance, using the word “hurt” instead of “pain” for children under six years of age helps them better comprehend chronic pain. Saying “Aunt Barby hurts” works better than “Aunt Barby has a migraine.”

When speaking with your child about chronic pain, try to create an open dialog that is age appropriate. Children need to be reassured about what is happening, especially when the child is the patient. For school-aged children, keep their teachers and counselors involved and offer them additional counseling and resources.

Young children have very active imaginations and when left to their own thoughts can make a situation much worse. I remember a time when I was young and a friend in school passed away. I had a cold the week before and went to school anyway. The teacher explained to the class that Chris had passed away after getting sick. For years afterward I thought I made him sick and that is why he died.

School-aged children think in black and white terms, so give realistic and honest answers like: “I don’t know when Christy will get better, but we can help make it easier for her if we do this.” 

Dealing with an adolescent child is a roller coaster for many parents and chronic pain makes that roller coaster ride even scarier. Many patients who are diagnosed in their teenage or early adult years will stop or slow development mentally and emotionally unless they are guided in managing their pain properly. They need understanding, support and encouragement from others, and to be engaged in social activities as much as possible.

It is best to answer their questions honestly and treat them with the ability to understand.  Get them professional help if they are acting out or asking questions you feel will be better answered by someone qualified in chronic pain and psychology.  

A big part of parenting and interacting with younger people with pain is our own guilt about their limitations. Instead of beating ourselves up, read them a bedtime story, watch a movie, or just spend time together. You may be surprised how proud your child is of how you are handling such a difficult situation as their caregiver. 

For parents in pain, the birth of a child is a wonderful and joyful event, but it raises a whole new set of concerns. For those who develop a pain condition after their child is used to life with fewer limitations and restrictions, this can bring on even more challenges and adjustments.

Some important questions to ask yourself are what if the pain grows worse? How will my child understand? How can I still parent them appropriately? And is there a difference if it’s mom or dad in pain? 

Have an open dialogue and communication that helps your children, grandchildren, nephews and nieces understand limitations and why a family member or parent is different. Children need to know they cannot catch your pain!

Children function better with a routine and knowing how things will get done – as in how they get to school or who will make their lunch. Make plans and stay organized. Get the family involved so that they know it will all be okay if mom or dad can’t manage things that day. Children of all ages need to be reassured about what is happening and that it will all work itself out. By planning, preparing, and helping, you can make it go that much smoother for the whole family.  

The bigger part of parenting with pain is our own guilt that we are short changing them somehow because of our limitations. With my older nephews, I didn’t have as close of a relationship with them for years due to not being able to manage expectations. Once I was able to set the expectation, it helped tremendously.

Yes, we may have to do things differently and maybe a few less things, but pick what matters and make it count.

And check out "Aunt Barby’s Invisible, Endless Owie" by Tim Ingle and Barby Ingle.

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.