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.

A First Time User Says Kratom Works

By Fred Kaeser, Guest Columnist

Like many of you, I have been following closely all of the kratom related articles here at PNN over the past month.

Prior to these articles, I had heard the name kratom several times in various readers' comments, but quite frankly I had no idea what kratom actually is. But all that has changed and it changed very quickly.

Truthfully, I was dumbstruck by the many comments praising the supposed wonderful pain reducing qualities of kratom. And when I read the results of PNN's kratom survey, I was convinced to explore as much information as I could about this leaf.

Admittedly, the kratom survey was very far from scientifically valid, but the results were astonishing to me. Virtually every one of the 6,000 or so respondents claimed this leaf to be a miracle worker. Not just for pain, but for various emotional and mental illnesses, and for opioid and even alcohol withdrawal. The more I read and researched the kratom leaf the more tempted I was to try it.

I have been in severe, daily pain close to ten years now. Those who have read my previous columns here at PNN, including my comments to others' articles, know that I am prescribed opioids for my pain. They also know that I am concerned about the various risks associated with my opioid use, and also know that I am a huge supporter of complementary and alternative pain therapies. 

I respect and am very appreciative of my opioid prescription. Without question, opioids reduce my level of pain and for that I am thankful. But I am also cognizant of the risks, especially the risk for developing a physical dependence to these medications, and consequently I am always trying to minimize just how often I must take my opioids.

FRED KAESER

So, it was easy for me to segue into trying something new to ameliorate my pain. And kratom seemed to fit the bill.

Even with the risk of a kratom ban, I was able to find an online purveyor who was still selling and who I had heard mentioned was a reliable vendor by many commenters on a number of kratom websites. I bought the Maeng Da strain as that seemed to be the best choice for me. I bought the type that is finely crushed and kind of flour-like in consistency. It wasn't too expensive.

Based upon what I had read, as a novice to the leaf, I started with slightly less than a teaspoon in the morning (about 2 grams). I dumped it into some water, swished it around, and chugged it. Some residue was left, so I added some more water, and down it went. Pretty bitter, gritty and crappy tasting. But, truth be told, it was not much worse than the powdered green vegetable supplement I take every day. Kind of like eating bitter, dried grass.

About 30 minutes later I was feeling some energy, an up-lift, and within fifteen minutes more my pain was reducing. I've been taking kratom for a bit more than a one week now and I have since reworked my dose to about 4 grams. This dose does the job for about 6 hours. My pain is still there but is dramatically reduced, and I feel an increase in energy as well. 

I've read about some of the risks associated with kratom, so I've resisted taking a second dose during the day. And after taking it for 3 days in a row I am now taking it every other day. If I was to do a second dose I would keep it to an additional 2 grams, but haven't gone there yet. 

My take is it works as well as an oxycodone 10mg. Kratom works as a wonderful compliment to the alternative pain therapies I utilize and I have not taken it on any day that I do my opioid medication. I am a little concerned about doing kratom every day, as there are stories about developing dependence.

I still have more to learn about kratom. But I definitely see it being as effective as the opioid medication I take. I have even been able to reduce that medication somewhat in just the time I've been using the kratom. I'll see how things progress and I will continue to research and learn more about this leaf.

I can see though that it does the job. I am tempted to give up the opioids and just do kratom, but I'm not there yet. I know what I'm dealing with when it comes to the opioids and I'm still too ignorant about kratom. 

If you have pain, you might want to give kratom a try. It's still early, but I am pretty impressed by what it is able to do.

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.

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.

The VA’s Opioid Policy Hurts Veterans Like Me

(Editor’s note: In 2015, Congress passed and President Obama signed into law legislation that requires the Veterans Administration to adopt the CDC’s “voluntary” opioid guidelines, which discourage the prescribing of opioids for chronic pain. Over the past year, the VA has implemented the guidelines throughout its healthcare system, which provides medical services to 6 million veterans -- over half of whom suffer from chronic pain. One of them is Ron Pence.)

By Ron Pence, Guest Columnist

I am a Vietnam veteran who turned to the VA health system in 2001, when I started having pain from polymyositis and chronic arthritis, the worst kind of arthritis caused by autoimmune disease. My own body was attacking my joints and muscles. They said CPK enzyme levels in my blood were very high and in danger of shutting down my kidneys.

Back then the VA cared about vets. I was started on pain meds and they moved me up the ladder as the pain increased.

The head of rheumatology started me on morphine because he said it was the only drug he had to offer. He was right. After 3 pain management visits, 3 more doctors agreed I was on the correct needed dose. X rays of the arthritis in my back ruled out chiropractic care.

I was on the same dose of morphine for 9 years. It worked well enough for me to function and to live alone. The VA promised to continue my opiate therapy as long as I did not break their rules.

After 5 years or so they came out with a new contract and forced us to sign it. I was told either sign it or you don’t gets your meds. I was never accused of breaking their rules and never have. I pointed out the new contract was totally in favor of the VA doing as they please and was signed under duress.

RON PENCE

Now out of the clear blue they cut my dose in half over two months and they may cut it completely because I refuse to take terrible and dangerous psychiatric drugs with the worst side effects. Just search the Internet for “Cymbalta side effects” and you’ll see what I mean.

The VA is really pushing these drugs that I would not give to a dog. They are a lobotomy in a pill. I WILL DIE BEFORE TAKING THEM. They take away your ability to think, speak and make decisions; and come with side effects such as permanent blindness, kidney stones and suicide, even in non-depressed people with no mental problems. Even trying to get off this drug under a doctor's care can end in death for some people. Besides that, it’s nothing more than a sugar pill for the pain.

Why start something like that when what I was taking had no side effects for me and was working fine? I am sure the pills they are pushing will end in a lot more deaths and terrible disabilities and suffering.

My companion almost died after taking Enbril. The VA doctors write prescriptions for Enbril, Humira, etc. as if they were candy. Four shots a month cost $2,000. Far more dangerous than opiates, but someone lines their pockets and the drug companies make over $10 billion a year on them. There is more here than meets the eye.

The CDC in Atlanta says their opioid prescribing guidelines are just that, guidelines. Doctors at the VA must not be smart enough to know what a guideline is. They’re pushing very dangerous, expensive and destructive drugs to replace opioids. Pray and try to find a substitute that works. Doctors sit and lie about what the guidelines say. The stress of not knowing if you are going to be cut off completely is as bad as the pain.

Since the big cutback in my pain medication, I am far less functional. Just standing up 30 seconds to snatch my clothes out of the washer puts me in hollering pain and I fall back into my wheelchair. Cutting the meds even makes it hard to get on the toilet. I am 70 and live alone. My family brings me food to keep me from starving most of the time. I have lost over 90 pounds.

This is going to mean the nursing home for a lot of people like me and I cannot stand the thought of living or existing in a nursing home. Karma is going to get a lot of people making these bad decisions.

I don’t take complaints to Washington because I am old and an 8 mile trip to Walmart wipes me out for a couple of days. This is a fight for the younger guys.

We are in one of the most advanced countries in the world medically, yet the doctors and politicians will not use that knowledge to ease pain and suffering. We have to find a solution.

Ron Pence lives in Florida. Ron enlisted in the Air Force in 1963 – at the age of 17 -- and served his country for 6 years.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

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

Keeping Kids Safe from Medical Marijuana

By Ellen Lenox Smith, Columnist

Frequently, someone will mention to me that they want to medicate with cannabis but won’t even consider trying it due to their children living in the house.

I can certainly understand their concern, but feel there are still ways to administer the medication, get control of your pain and also keep your children safe.

What are the biggest concerns a parent has about using marijuana around children?

1. The danger of cannabis getting into the children’s hands.
2. The smell from smoking marijuana alerting children to what you have in the house.
3. The still lingering issues of society’s judgment of it

How can you comfortably still make use of cannabis with children in the house?

As with all medications kept at home, you always have to be alert for the safety of children. Cannabis is no different. For any medication, parents (and grandparents) should consider locking it up to keep it out of the wrong hands. 

To still be able to enjoy the benefits of marijuana, but without the smell, there are ways to administer it that are just as successful as smoking. Many wrongly assume that is the only way you can use it. 

I only take cannabis as an oil. It is kept in a medicine bottle, measured out nightly and mixed with some applesauce. This is not something that children are attracted to. I always make sure it is a secure spot. I sleep through most nights and generally during the day never need to take any other forms of the cannabis, since it continues to offer me benefits from the nightly teaspoon.

Another effective option is to use it topically. The results are soothing and have shown tremendous relief, even for those suffering with Complex Regional Pain Syndrome (CRPS). We make ours with a peppermint oil extract added to mask the smell. The peppermint also helps  open the pores in the skin to allow for absorption.

Tinctures containing cannabis can be made in either a glycerin or alcohol base. They can be stored in a medicine bottle and used as frequently as needed. One simple teaspoon in the cheek or under the tongue allows for absorption and pain relief. You can also take cannabis as a pill or suppository, and many have learned to make it as a drink or steeped as a tea. 

For more on the different ways to use cannabis, see my column: “How to Use Medical Marijuana Without Smoking.”

Finally, as far as societal judgement goes, as your children grow older, it doesn’t hurt to be honest with them about the benefits you have found from using cannabis to improve the quality of your life.  It is no different than any illness you are coping with where there is a need to medicate. As time progresses, this conversation will get easier as society embraces this safe alternative.

If you are one of those people who is putting the benefits of medical cannabis on hold because of your children, you might want to reconsider your options and allow yourself the relief you need. Remember, unless you take too much, you do not experience the high that people associate with marijuana. A body in pain does not react to marijuana like a body using it socially. You get pain relief and the others get the high.

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.

Why You Should See a Psychologist

By Crystal Lindell, Columnist

The weirdest part about getting psychiatric help is that people notice it.

They notice it in the same way they notice when you lose weight, or dye your hair blue. Like the IT guy at work, who says you just seem more confident lately. Or the friend’s husband who says you seem happier these days. Or the old Tinder guy who finds you on Facebook to comment that you seem so different, so much happier — and even your eyes seem brighter somehow.

I didn’t expect that. When I was in the thick of it, in the blackest night, I didn’t think anyone really noticed how bad it was. I don’t think I even noticed how bad it was. But if they’re noticing that things are better, then it’s probably safe to assume that they noticed how bad it was.

The fact is, getting psychiatric help in this country is depressingly difficult. The first time I sought help three years ago, I had just gotten sick and the pain was so horrific that I had been planning on slitting my wrists in the bathtub.

I finally worked up the courage to tell my primary care doctor that I was suicidal. He referred me to a psychologist who he said worked with people in pain.

But the psychologist refused to see me because she only worked with cancer patients in pain. I apparently wasn’t sick enough for her. So she referred me to someone else, and then weeks later I finally got in for an appointment.

To recap: I literally had a plan to kill myself, and it took weeks for me to find any help.

I’m a well-educated white woman with health insurance. If it’s this hard for me, what are other people going through?

Luckily, the doctor I got paired up with was great and helpful and sometimes a little mean, but always very good at helping me figure out how to deal with all the pain I was suddenly enduring.

The sessions weren’t so much about her telling me what to do, but how to do it. For example, we both agreed that I couldn’t work when the pain was 10/10, but instead of letting it get that bad and then ending up hysterically crying in my boss’ office begging to leave, we came up with a different plan. At the beginning of the week, talk to my boss and agree on days I could work from home. This way there was a plan everyone could feel secure with, and my pain wouldn’t reach 10/10 in the first place.

It seems like little things, but when you find yourself sick, it’s like you’re in a new country and having any sort of map can be extremely helpful.

Even if someone can get an appointment with a psychologist though, AND their insurance will cover it, there’s still another hurdle. A lot of psychologists suck. Just like a lot of doctors suck. And a lot of mechanics suck. And a lot of restaurants suck.

I hear all the time from people who say things like, “I don’t even bother seeing a psychologist, because they aren’t any good anyway. They don’t get me. They don’t help. They just want to get me in and out.”

But people don’t just stop going to restaurants because the Mexican place in town gave them food poisoning. And they shouldn’t just give up on therapy because they had some bad experiences.

Of course, even if you get past all that, there’s still the stigma. There is this idea that if you’re getting mental health help that you’re somehow weak. But getting your brain healthy doesn’t make you weak. It makes you strong. Life doesn’t come with an instruction manual, but getting a neutral opinion from an outside party is almost as good.

These days I see a team, a psychiatrist and a psychologist. The psychiatrist works with me on medical options, while the psychologist offers cognitive therapy to help me navigate my life.

And, honestly, my biggest regret is that I didn’t get help for my anxiety sooner. After going through opioid withdrawal over the last year, I’ve realized that I had been struggling with anxiety since at least my teen years.

It was as if all the pain meds I was on masked it just long enough to show me that there was, in fact, a better way to live. That there existed a possibility for a life that didn’t include waking up literally everyday feeling sick to my stomach, with anxiety attacks on the bathroom floor at work, and obsessing over every little thing.

I confess I was extremely resistant to the idea of going on a long-term anxiety medication, but I’m so glad that I worked with my doctor to find one that works on my brain. And aside from easily bruising, the side effects have been very minimal.

People don’t talk enough about the mind-body connection, but it’s there. And when you’re in pain or dealing with something like opioid withdrawal, getting mental health care may not be the first thing people seek. But it turns out, getting your brain healthy is just as important as getting your body healthy.

In the end, the question that psychology asks is simple: Can people actually change? I have to believe the answer is just as simple: Yes.

And if people can change, maybe the world can too.

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.

The Importance of Participating in Pain Research

By Barby Ingle, Columnist

Over the years I have participated in many research studies and potential new treatments. One such study was just published in the Journal of Translational Medicine by Drs. Garabed G. Demerjian, Andre Barkhordarian and Francesco Chiappelli.

So many people over the years meet me and soon realize that I have a device called an oral orthotic in my mouth. This “OO” as I lovingly call it has helped me so much, and now there is published research behind what it is doing for me.

Back in 2002 when I developed Reflex Sympathetic Dystrophy, I lost partial vision in my right eye. I saw many eye doctors and ENT (ear, nose and throat) specialists who were unable to pinpoint where the breakdown in the nerves were. They hypothesized that it was due to inflammation from the RSD cutting off a nerve pathway.

Within 30 seconds of putting in the OO, I had my vision back after 10 years of being told that I would never see properly again. My world is now brighter with the OO, literally.

I also had improvement in pain levels affecting my entire body. I have been able to get my infusion therapy minimized to only 1 or 2 boosters a year and get off all daily pain medication. I also have had improvement in my balance, coordination, dystonia, memory and mood. My migraines and headaches are less frequent, and although weather and pressure changes still affect me, it is not to the extent it was prior to my oral orthotic use.

The research doctors and my treating doctor, Garabed Demerjian, approached their study with an individualized approach that they made measurable for each patient who participated. I underwent multiple MRIs, cat-scans, X-rays, synovial fluid testing, psychological testing, and saliva testing.

These tests were done in an effort to quantify the outcome and show the effectiveness of the oral orthotic. I participated in the study in 2015, about three years after getting my OO. I already knew that the tests were going to show amazing results. That is great for the scientific community and for advancing new treatment options.

Traditional research in the health sciences usually involves control and experimental groups of patients, and descriptive and statistical measurements obtained from samples in each group. The research I was part of used a novel model known as translational medicine, which "translates" research into more effective healthcare -- a "bench-to-bedside" approach. This type of research is increasingly becoming more established in modern contemporary medicine.

I often say that each patient is different. Our biological makeup and life experiences mean disease often affects us in different ways – making a one-size-fits-all approach to medicine impractical. Science is seeing this too. It’s becoming more focused on translational research for the ultimate benefit of each individual patient. This is what we need.

I know and understand that being part of a research study is not for everyone. It doesn’t always go as great as it did for me. But stepping up and trying something that can benefit others is very rewarding.

I thank all of the research doctors and scientists who are making a difference in our lives. It can take years of research before they see actual results, and they are not always recognized for their efforts. I find it hard to express the full gratitude they deserve. Thank you to our researchers in the chronic pain community.

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 on her website.

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

Don’t Take Away My Right to Kratom

By Jennifer Sage, Guest columnist

I'm on Day 5 of a withdrawal from all of my pain and anxiety meds at the moment this is written.

I just took my morning kratom about 30 minutes ago, assisted to the kitchen with my cane, and right now I can not only walk without the cane, but have zero effects of withdrawal. A very slight headache in the first few days, on and off, but that's it.

I would like to mention I'm 35, a multiple sclerosis sufferer, and a prescribed pain med patient for 7 years. I took off my fentanyl patch on Day 1. Haven't touched a hydrocodone since Day 1. Haven't taken anything other than a tapering dose of clonazepam every other day due to the deathly dangers of stopping that cold turkey.

This plant is a miracle. I've gone through the worst of withdrawals from meds that I couldn't function on to a happy, peaceful, pain-free existence without the use of any of them.

I'm a single mom, an author of 7 published novels, a finance industry employee, and I suffered immensely every day, some days even with the meds. I have wonderful doctors and I don't believe the healthcare system has let me down because they were doing all they could to keep me as productive as possible.

I took nearly a year off work 2 years ago because the MS was unmanageable. I only wish I had known about kratom sooner.

Am I going to be a felon now because I can't live in pain and I refuse to go back to that madness of life that kept me sick instead of healing me? A felon for taking a leaf that Mother Earth provided to do this very thing?

I understand the need for regulation. Put an age limit on it. Get the junk out of the smoke shops that real users of kratom don’t use. Go into the forums and you'll see that true users of this plant are buying high quality powders that we mix in water or juice and take it like we would our very dangerous pills.

JENNIFER SAGE

My 10-year old daughter just got her mom back. If you need her testimony of what life was like before kratom and after, I'm sure she would be happy to share with you. Kratom doesn't get you high. It's self-regulating. If you take too much (which I haven't, but I hear it can happen), you just get nauseous.

I've had days where I took 80-100 mg of hydrocodone on top of my fentanyl patch and was still in bed crying. I wanted to take 100 mg more just to stop hurting. But THAT would've killed me.

They've urged me to go on oxycodone and other more powerful drugs, but I get deathly ill when I take them. This is my choice. This plant that has no abuse potential, NONE, has in 5 days changed my life.

I will always be dependent on something to ease my pain. I choose kratom to be dependent on so that I can live my days without pain, and without the fog and stress of consistently wondering when my next meds can be taken. I would give my daughter this herb over the toxic pills for children once there's more research. There are no negative effects, but there are thousands of positive ones.

DEA, your war on drugs is with the meth labs and heroin that riddle our streets. Maybe if so much manpower wasn't being spent on this peaceful, harmless plant, a 10-year old girl in New Mexico would still be alive. Meth killed her and her mother. And you're going to put kratom in the same category?

It is our right to have a voice in this country, and you are trying to take ours away. Listen to the stories. We aren't trying to get high. We're trying to live our lives.

Jennifer Sage is an internationally acclaimed fantasy romance author, mother, advocate for healthy living, active hiker and, more recently, a user of kratom. Jennifer’s most recent book is The Last Valkyrie. You can learn more about her by clicking here.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

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

Pain Companion: The Stories We Tell Ourselves

By Sarah Anne Shockley, Columnist

Coming to grips with the fact that we’re living in chronic pain can be incredibly challenging and distressing. To help us get through, we tell ourselves stories – reasons, excuses and rationales – to cope with and explain a difficult situation.

That isn’t necessarily a bad thing. But sometimes we get stuck in a particular story which may impede us from getting to the next step or level in healing. Getting stuck in a story can make us think there isn’t really a next anything.

I’ll describe a few of the common stories, not to make anyone feel bad, but to remind us  that there are a variety of ways we can hold our situation in our minds and our emotions, and that some stories may be more useful than others. By knowing there are different perspectives, maybe we will be less apt to get stuck in any one of them.

It’s Only a Flesh Wound

This is often the first story we tell ourselves, sometimes even when we’re in pretty dire straits. It’s extremely hard to accept a severe illness or injury as a reality, and we may feel that if we let that truth in, it’s letting the pain win.

But we can’t stay in denial forever if we want to move on in life. We have to face our situation head on, even if it means accepting the fact that moving forward means we are moving forward with pain for a time. Maybe a long time.

Keep My Seat, I’ll Be Right Back

This is another flavor of denial that we often adopt once we’ve accepted that we’re dealing with more than a flesh wound. We tell ourselves that it may look bad, but it will be over soon. Not a terrible thing to believe, if it helps us get through the day.

On the other hand, if we sit in this story overly long, we may be avoiding some things we really need to deal with: That life has changed, that we need to make some accommodations, and that we may have to look at how pain is affecting our work life and relationships.

We may also be ignoring medical or alternative approaches that could really help us. We’re choosing the story that we’re not going to be doing this for long, so why initiate a long-term pain management protocol?

The Answer is Just Around the Corner

This story is about the belief that there is one miracle cure to find and then everything will be all right. There may be, but when we tell ourselves this tale, we could be missing out on all the little, but important things we can do right now to increase our well-being: like resting, drinking a lot of water, eating healthfully, laughing more, staying as stress free as possible, and staying connected with friends.

There is No Answer

This is the story we tell ourselves when we’re discouraged. When we don’t find an answer after months and years of searching, we might decide that there really isn’t any answer at all for us, and that we are lost in our pain forever.

We might then conclude that we just have to live with the pain in a state of resignation. We lose hope and stop moving toward answers and start to dig in for the long haul.

Pain is Bigger than Me

Another common tale is that pain is bigger than we are. It is so all encompassing, so demanding, and so ever-present that it can begin to feel like it has taken over our whole world.

Yes, it may be everywhere we go right now, but it is not the totality of who we are. Pain is an unpleasant experience we’re having, but it is within our experience of life, and it is not all of life or all of us. We need to be careful not to confuse ourselves with our pain, and to remember to find ways to experience pleasures and joys alongside of it wherever we can.

Sometimes the stories we tell ourselves are the only way to get up in the morning or to make it through the day. But sometimes the story is what’s keeping us stuck. I guess the question to ask is, how is my pain story serving me? Is there something I can change in it that will lead to a greater sense of hope, well-being and renewal? Then we can choose to create a different tale to tell ourselves.

Maybe it becomes the story of how healing isn’t some unknown point in the future, dependent upon one right answer, but what we do every day. It becomes the story of finding ourselves again when we thought we were lost, and the story of allowing our healing to take the time it needs while maintaining a balance between acceptance of our current limitations and positive action toward a less painful future.

It becomes a story that focuses more on where we’re headed than what’s wrong right now. And it’s a story we’re free to modify, enlarge or swap out for a new one as soon as it becomes outdated or restrictive.  

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.

A Pained Life: Swim at Your Own Risk

By Carol Levy, Columnist

I swim at my local YMCA. A new pool just opened and there are no flags or indicators showing when a swimmer is close to the end of the pool.

I can only do a backstroke. Not knowing where the wall is can be dangerous. I had already hit my head once miscalculating where I thought the wall was.

“I wish they had something as a warning that we are close to the wall,” I said to Jennifer, one of the lifeguards.

“Well, don't swim on your back. Then you can see it yourself,” she replied.

“I would love to, but because of my neck situation I can't swim on my stomach,” I explained.

Jennifer responded strangely: “Wah, wah, wah.”

I looked at her in surprise. Usually she is sweet and kind.

“My neck is held together with 12 pins and 2 clamps,” I told her. “I can't swim on my stomach. The posture and head movements for breathing are impossible for me.”

“Wah, wah, wah.”

“Jennifer, my entire neck is held together with metal. That's all that holds it up,” I said, starting to feel angry and frustrated.

“Wah wah wah. Wait! What if you used a snorkel?”

Her suggestion ignored what I had said about why I couldn't swim on my stomach.

There is another reason I can’t use a snorkel: I have a phantom touch-induced discomfort in my face. But that was more then I wanted to explain. And the explanation would require more explanation to explain what I was trying to explain.

On the other hand, my facial paralysis is very visible. The left eyelid is almost always swollen. As soon as someone sees me they know something is wrong.

“I can't keep my head in the water,” I said. “My eye doctor told me I shouldn't even be in the pool.”

Jennifer's response was quick and easy: “Oh I'm sorry. I didn't realize. That definitely would be a bad idea.”

I was flabbergasted. She dismissed my neck issues even after I explained the situation. But I was astounded by how quickly she capitulated when I said my eye is the problem.

Oh, I get it. The eye she can see. It is not something she needs to understand. All that matters is that it is visible and obvious. My neck, on the other hand, is not.

The conversation with Jennifer was the perfect embodiment of the visibility/invisibility issue we all face. At what point do we decide it is not worth the explanation, the struggle to let ourselves and our truth be heard?

Too often I feel like my integrity is being questioned by two people.

The first person is the one who refuses to listen and accept.

The second person is me, because I am too often forced to lie.

I don't want to lie. I don't like to lie. I like to think my word is my bond. But, sometimes it is just easier to break that bond with yourself then struggle to explain and be heard.

Add one more pain to the list.

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.

Why I Prefer Kratom Over Pharmaceutical Drugs

By William Johnson, Guest columnist

I've experienced much of what's wrong with our healthcare system and can think of only one possible solution people can do for themselves when it comes to pain management, which leads to another matter as well.

Kratom works well for pain and you don't need a prescription to buy this centuries old remedy from Southeast Asia. Did I say buy? Yes I did, which leads to the other matter. The Drug Enforcement Administration is currently in the process of classifying the leaf from this tree into a Schedule I drug, meaning no one will be able to prescribe it, much less buy it inside the United States.

At this very moment, thousands are telling and retelling their stories about kratom, trying to save it from the axe of the DEA; how it saved their lives or helped them stop taking pharmaceutical drugs that have horrible side effects, such as Xanax, OxyContin, Klonopin, Paxil and many others.

I was unaware of this plant until three months ago, when I first began taking kratom. I was fed up with pain clinics, tired of being treated like a criminal, and tired of waiting for hours each month just to have a prescription renewed.

I was also tired of the adverse side effects from long term opiate use. Those include, but are not limited to, depression, lack of motivation, liver damage, and severe constipation. Sound familiar to anyone?

I've made some other discoveries along the way as well. My recent annual blood work to test liver function returned to normal for the first time in over a decade, after I contracted Hepatitis C at a dentist’s office.

william johnson

Not only that, while it relieved most of my pain from several conditions of the spine, ones I was told would require long term opiate use for the rest of my life, it also adequately treated the symptoms of Hepatitis C, like chronic fatigue, joint pain and a host of others common to those with this virus.

My doctor was amazed when he found out I was consuming kratom, a botanical he'd never heard of. He began to research it and concluded the same thing as I. Kratom is the most likely cause that my liver functions are normal. He's never seen this with any patient with such a high viral load, not to mention the Hepatitis-C, which also managed to give me stage three Cirrhosis.

Unheard of, you say? Needs more study, right?

Every kratom researcher to date has recommended more study on its potential benefits, but now the DEA comes along saying kratom presents an imminent danger to public health -- even though it cannot identify a single death associated with kratom use alone.

One of the points I'm hoping to make is that there are viable alternatives for pain sufferers that don't include dealing with the healthcare system. And because more patients are learning about kratom, costing the industry million upon millions of dollars, DEA has stepped in to ban kratom for its pharmaceutical buddies, using outright false information in the process.

For more on that, click here to see a letter to the DEA from the Center for Regulatory Effectiveness.

And if you haven’t already, sign the petition to the White House opposing the DEA action.

While we're not going to fix the influence money has on the healthcare industry in a day, a week or even years, one thing we can do is remove as much of our business from that industry as possible. If herbal remedies work as well or better, I strongly suggest we work to keep them legal. Western medicine doesn't have all the answers and it might serve the public interests if we begin to realize this.

William Johnson lives in Virginia. He is a retired urban planner, who advocates for organic farming and gardening.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

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

‘Hope Is True’ Primed to be Pain Community Anthem

By Barby Ingle, Columnist

Even the tiniest spark of hope can get someone through the toughest moments in life – whether the challenges are physical, emotional or spiritual. Sometimes, all it takes is a song to help us feel better about ourselves.

Chronic pain affects one in seven globally, so it’s bound to affect you or someone you know. We need a way to have the voice of pain patients be heard so society will better understand our challenges and provide better support. That’s why the International Pain Foundation (iPain) developed the Music Moves Awareness project.

This month we released a new song and music video to shed some light on the daily challenges faced by the pain community. “Hope Is True” was created in collaboration with some of the brightest talent in the entertainment industry, including Ryan Young, William J. Fuller, The Silhouettes, Lynne Waggoner-Patton, Who is Emileigh Productions, Alex Geringas and Intellectric Media.

All funds raised from iTunes and other outlets through sales of “Hope Is True” will benefit iPain programs and the pain community. iPain is dedicated to shining a light on chronic pain, funding research and helping patients get better access to pain care. As we move forward, iPain will be using music -- particularly this new song -- to educate the world about chronic pain issues and their social, cognitive, physical, emotional, and developmental impact.

The International Pain Foundation recently celebrated its tenth anniversary and the Music Moves Awareness program by hosting a premiere party for “Hope Is True” in downtown Los Angeles. Celebrities who came out in support included Christina Milian, Ally Hilfiger, Rachel Reenstra, After Romeo, Bret Lockett, Chris Caldovino, Gillian Larson, Billy Blanks Jr., Dre Davis, and many others.

It’s all about raising awareness. We have celebrities come to events like this to tweet about it and talk about it -- and then we turn the spotlight on patients and share their stories.

The Music Moves Awareness project is centered on empowering chronic pain patients to live the very best lives they can. We believe music has the power to make lives better and inspire those living with chronic pain to become engaged by being their own best advocate.

All of our educational events are free for the patients to attend. My dad started the foundation because it took three years to get a proper diagnosis for me. We figured if it happened to me, it’s probably happened to other people.

What started as a family project turned into a non-profit foundation. We’ve done pain expos, symposiums, and currently have a webinar series as a part of the Music Moves Awareness initiative. We also get the word out by distributing printed materials and recently launched our new magazine, iPain Living.

iPain supports the idea that chronic pain is a real and complex disease that exists either by itself or can be linked with other medical conditions. As a charity, we campaign for effective pain care through an array of treatment options, many of which are widely inaccessible. Chronic pain is an unrecognized public health crisis with devastating personal and economic impacts. Most importantly, we operate under the belief that allowing people to suffer with unmanaged pain is immoral and unethical.

Over the next 18 months, we’ll be releasing features about chronic pain patients, sharing their stories and putting the spotlight on them. Each patient has a different pain condition, different treatment options that they’re pursuing, and things that are going on in their lives. 

This will help the world learn more about chronic pain and give us all new hope. 

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 on 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.

Waiting for Santa in the ER

By Emily Ullrich, Columnist

Some of you may have noticed I’ve been silent for a while. I’ve been shirking my duties to the pain community because I am so fed up that it all seems futile.

I’ve been struggling with feelings of defeat and guilt at my unusual inability to muster the courage to continue. I have been deeply introspective and, for once, I’ve had no words for the profound emotional disenchantment that one experiences when they realize that most doctors really don’t care.

My mother tells the following story about me when I was a little girl, and it struck me that this feeling I have today is the same one I had when I realized there was no Santa Claus.

She says that I essentially disassembled the entire house of cards that kids are brought up believing in. She says I was lying in bed when I asked her if Santa was real. She attempted an explanation that Santa was the spirit of Christmas and that he wasn’t an actual person, but that his essence was within all of us. According to her, I went on to ask if there was an Easter bunny, a tooth fairy, or even a God.

A few years later, I left the sheltered life of Montessori school, where creativity was valued, analytical thinking promoted, and social interactions remained innocent. I entered public school in the midst of puberty. Despite my many futile attempts at preppy mall fashion, and rehearsed and repetitive social coolness, I could not blend in.

To my dismay, my quirky, outside-of-the-box thinking betrayed me daily. I became the weird, socially awkward, politically and culturally over-saturated smart girl, wearing the body of a 6-foot tall woman.  As a writer, these experiences have given me a unique lens through which to view life and are now the things I pride myself in.

As a chronically ill patient, I have been thrown right back into the post-traumatic stress of that time, my intellect and strong personality are not seen as behaviors of a good patient. I feel l have to be a fake to get the care that I need. I feel this sensation washing over me every time I have a doctor’s appointment, surgery, procedure or hospital stay.

I’ve written before about the inhumanity and cold, cruel treatment I have received more times than I care to remember. I am aware that there are doctors and nurses who do care and actually want to help, and I have been blessed more than a few times with having these amazing people as my caregivers.

But if I am truly honest, more often than not, these gems of humanity are not the ones we patients get.

I understand that they’re at work, doing a job, and they have to do more for us than the usual patient. Some are also jaded, uninformed, insensitive and, frankly, shouldn’t be in this line of work.

When a patient’s life, health, and attitude are psychologically and sometimes physically neglected, disrespected, and infused with negativity, it’s scarring. It plays over and over in your head. Although it’s really hard to control my temper and emotions in this situation, I do my best. It’s not natural for me. I am opinionated and strong-willed.

I’ve learned the hard way that when I act how I feel like acting, my care gets even worse. I always wonder what I could have or should have done differently to make the situation better.

I know that I am probably coming across as very negative, but there is one thing that I know about myself -- when I am at my worst, I am often at my best. What I mean is, I want to make others around me comfortable, and the more serious a situation is, the more I try to bring levity and positivity. I try to make people feel at ease, to laugh, and to know that I am grateful for their help. I make a point of being very polite to my caregivers, even when I’m frustrated with them, and I make a point to ask how their day is, even if they haven’t asked about mine. This leads me to my most recent hospital stay.

My Latest Trip to the ER

I went to the emergency room because my home healthcare nurse demanded it after noticing that my arm with a PICC catheter line was very red and inflamed. As usual, the ER doctor treated me like I was there for fun. Because waiting for 6 hours in a room full of sick people and being treated like crap is everybody's idea of a good time!

It turned out that I had pulmonary embolisms -- blood clots in my lungs -- a life-threatening condition which frequently causes stroke or heart attack. The doctor scolded me that I should "take this seriously," as though I got the clots from doing some sort of illicit behavior and was obviously careless about my health. I wonder if it ever occurred to him that maybe I was taking it seriously -- by going to the damned ER!

He then launched into a lecture about the evils of pain medications, and even alluded to the doctor’s oath to "first do no harm," insinuating that the doctor who prescribed my pain medicines (who happens to be the kindest, most compassionate and knowledgeable doctor I’ve ever had) was not helping me, but harming me.

He assessed all of this in two minutes of talking at me, not to me, and without any idea of the myriad health conditions I live with. Sick, and even sicker of dealing with this re-run of the C+ med student-come-doctor with a God complex, I mustered the energy to stand up for myself. I argued that this was probably not the best time for a discussion about changing or completely discontinuing my medications, seeing as I had pulmonary embolisms to worry about, and a pain doctor whose specialty it is to deal with that was not present.

God forbid, I had challenged his almighty ER doctor knowledge and here's where it got good.

He decided to un-diagnose my Reflex Sympathetic Dystrophy (RSD) -- an extremely painful and complicated condition I was finally diagnosed with after two years of surgery, doctors’ visits, and being told there was nothing wrong with me that a knee joint replacement and antidepressants wouldn’t fix.  

Then I spent three days in a hospital being run through a battery of tests and a whole team of doctors had agreed on my diagnosis of RSD.  It’s an illness that I take medications for, have physical therapy for, use a cane for, and which you can tell I have just by looking at my knee -- which he never did.

"You don't have RSD," he said. Based on what? Maybe the fact that I wasn't screaming and writhing in pain, as he thought I should be?  

"Did a neurologist diagnose you?" he asked. I explained that I spent days in the hospital having a battery of tests and a number of different specialists all agreed that I have RSD. Again, he asserted his disbelief, without ever looking at my knee!

Begrudgingly, he admitted me to the hospital, as though I intentionally manifested blood clots in my lungs just so I could hang out with his charming self. He also lectured me further about the gravity with which I should treat this situation.

I wonder since if he has ever thought about this interaction with me, and in any small way realized the hypocritical irony that his entire discussion was loaded with.  

I can't stop thinking about what happened. Or where Santa went to.

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.

Don’t Let the Media and Medical Profession Fool You

By Richard Oberg, MD, Guest Columnist

Chronic pain patients, like my wife, myself and others with abominable mistreatment, continue to lose the care they need while nothing is being done to address the real issues.

Drug abuse is up, young people are dying and the main culprits aren't prescription drugs, but something much more difficult to control. Heroin and illicit fentanyl, major causes of the increasing deaths, are becoming more widely available and, unfortunately, both of them are opioids.

The media routinely spouts about these “opioid deaths” while implying that prescription pain medication is what caused healthy people to take these illegal drugs. Why? Because they say so, that's why.

As with the recent 60 Minutes nonsense, they embellish the death of some high school quarterback, have a room full of grieving parents who say they had no idea their kids were drug addicts, add the fear that this can happen to you, and we the patients get to bear the brunt of this misdirected insanity.

The CDC addictionologist lobby and other federal agencies seem to have hoodwinked everyone into blaming chronic pain patients for this national problem. This is obvious and evident from countless stories of patient abuse no one seems to want to hear. The word is “scapegoat” and not a single person in power is responsible for anything – only we the patients are.

The CDC, government agencies and, quite frankly, the majority of physicians are NOT well-intended on this issue. They created this patient crisis that could have been avoided.

Don't let the medical profession that I was a part of for nearly four decades fool you. Physician sub-specialty organizations now exist for the benefit of physicians, not patients, and are mostly about maintaining control and money. Had these organizations stood up to defend patients against the CDC, and the ridiculous addictionology cohort of psychiatrists and anesthesiologists grooming their financial turf, we wouldn't be here right now. But they didn't, and a majority of physicians say they actually support the guidelines.

Don't buy the “they made me do it” line. It is misdirected nonsense, just as eliminating the pain scale to prevent any accountability is. Physicians don’t like accountability.

Inevitably, doctors still willing to write prescriptions for pain meds will attract greater numbers of chronic pain patients – and become easy prey for the DEA or their physician colleagues who don’t approve. Some of these doctors will become outliers in medical associations whose members tell them to stop because they don’t want to see or treat patients like us.

Why doesn't anyone ask where all the patients of physician practices that are being shut down go to? It's because no one in power cares, that's why. And then there’s the sheer ignorance or bigotry of many physicians who profess to be “pain management experts.”

The American Medical Association (AMA) once represented 75% of all licensed physicians and supported the best care for patients. 

Today, membership in the AMA has declined to just 15-20% of physicians, as subspecialty organizations gained power and patient care became driven by those isolated subspecialties. 

These organizations support the flow of wealth to their specialties better than the AMA ever could.  With increasing specialization, patient care became highly fragmented for those with complex diseases, yet there was no attempt or incentive to coordinate care. It became every patient for himself.

It is extremely rare to non-existent for a physician specialist to actually speak to another physician about your care, nor is much if any time spent reading another doctor’s evaluations. It’s just not fiscally expedient with current healthcare models. That is why you’re “re-evaluated” by every new specialist you see and have to reprove your illness over and over, often to skeptical stares.

The major problem with this is that subspecialties often “evaluate” you beyond their competence. For example, a rheumatologist is vastly superior to a psychiatrist if you have an autoimmune disease, but if you’re depressed and miserable because of an undiagnosed autoimmune disease and enter the care of a psychiatrist, the odds of ever getting an appropriate diagnosis are nil. Worse, they can make your life hell.

It’s just not what they do -- they make you fit their model – not the other way around. Whenever you get into the care of some subspecialist unlikely to have any idea what’s wrong with you, it inevitably leads to biases against you because physicians are just as bigoted about what they don’t understand as anyone else.

The attitude of most that my wife and I have encountered (despite both of us being physicians) suggests that most subspecialists get their information from the nightly news rather than medical journals outside of their specialty. Neurosurgeons think opioids are bad because that’s what they’ve heard. And they’d rather believe that than have you tell them otherwise.

From our point of view, it’s would almost be comical if it wasn't so infuriating.

Often, chronic pain patients are not sick enough to warrant hospital care (following acute care protocols), yet are too ill to be seen by outpatient physicians who aren’t reimbursed enough to spend additional time figuring you out or interacting with your other physicians.

And there are plenty of “well patient” visits providing better income – so why bother?

If this sounds bad, it’s because it is. For those who like their anesthesiologist pain care person, good for you. Many of us aren’t so fortunate. And someday you might not be either.

I’m not sure how much worse this will get, with patients losing access to opioids or seeing their doses cut, while overdose death rates continue to rise -- refuting CDC wisdom. Taking meds from chronic pain patients isn’t going to fix a problem caused by healthy people with illegal intentions.

Maybe some powerful mainstream media source will actually ask someone in power what's going on and not settle for anything other than a straight answer. But I wouldn’t hold my breath.

Take the unfortunate demise of Prince and how it has been reported. Whenever someone with career-induced injuries attempts to defeat aging by taking illicit opioid pain medication to continue performing 20 year old moves on a 57-year old body, bad things will result. It shouldn’t be rocket science to figure that out, yet I don’t recall a single media source saying that.

Instead, Prince has become another idiotic reason legitimate patients shouldn’t get opioid pain care – all because he intentionally misused it to extend his career. Because of the actions of a few, the vast majority will suffer. Not exactly stellar for the most expensive healthcare system in the world, is it?

Richard Oberg, MD, is disabled by psoriatic arthritis and no longer practices medicine. Dr. Oberg receives no funding from pharmaceutical companies. 

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

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