Hoping to Survive the Weekend

By Sarah Daniels, Guest Columnist

How are chronic illness sufferers with life threatening problems supposed to be safe when the people working for the insurance companies, making life and death decisions about their medical care, have no medical training or background whatsoever?

Why is it up to some high school graduate whether or not I can get oxycodone? The same medication that a pain management specialist, primary care provider, neurologist, Ehlers-Danlos syndrome specialist, and 10 other doctors all agree I need to be on.

The is the same medication I was finally given permission to use after YEARS of suffering terrible pain every second of every day, being forced into physical therapy five different times, actually worsening my condition (it can be extremely dangerous for someone with Ehlers-Danlos to participate in physical therapy if the therapist has no knowledge of the illness), paying $8,000 for laser therapy with absolutely no results, and being forced to trial endless medications that are far more dangerous but cheaper for the insurance company -- just so I could be on a medication that we already knew was safe and worked with great results.

You know what is on my mind today? Whether or not I’ll be able to make it through the weekend without having a seizure and dying. NOT because I get seizures, NOT because my condition progressed so much that there is no hope, and NOT because the doctors don't know what is wrong with me or how to help me.

No, it is because a few people in some office working for a money hungry insurance company that has made a monopoly out of the health of our fellow citizens couldn't get their act together and figure out what was wrong on their end by 5 o clock Friday.

I was on the phone with Blue Care Network (Blue Cross-Blue Shield of Michigan) for hours Friday. HOURS! They couldn't tell me why I can't get my medication, just that I can't get it. They also wouldn't tell me if any of their rules or regulations changed.

They would only tell me that just because I never had a problem filling my meds before doesn't mean there isn't a problem now. They couldn't even tell me what the problem was!

I have the pharmacy, my primary care physician and my specialists all on my side, telling them I need the medication. Telling them how dangerous it will be if they don’t get this figured out. Telling them my life will be in jeopardy. And what is their response?

SARAH DANIELS

"Ma’am, I have no medical background so I can’t discern if that’s true or not.”  

Try Googling Ehlers-Danlos syndrome. Open your eyes, your heart and have some compassion!

I have done everything right. I have all the authorizations I need and have taken my meds as prescribed, no matter what the circumstances have been. This is why people all over the United States are dying. This is why suicide rates have jumped since the new CDC opioid guidelines have been put in place.

If I could pay for the medication out of pocket I would, but I am on disability like a lot of other people. My money can either go toward my rent and utilities or my medical bills, but it doesn’t pay for both. Most of the time I am struggling to have food on the table and gas in the car. I suppose on the bright side, with gastroparesis and a severe mobility disability, at least my need for both of those things is less.

You want to crack down on the heroin epidemic? How about allocating some funds for substance abuse and mental illness? How about counseling instead of jail time? Heroin addicts could care less about a rule or regulation. They will find a way to get high no matter what.

The war on opiates is killing chronic pain patients like me, who, if it weren’t for their medicine, would be bed ridden. We are the ones suffering. We are the ones paying for others’ choices and mistakes.

This isn’t right. Something has to be done. It’s 2016. There is no reason on earth that a 29-year old woman, a U.S. citizen, should have to worry about dying because they cannot get the medical care they need.

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.

How Two Toddlers Saved My Life

By Crystal Lindell, Columnist

I wish I could say it’s been a rough couple months for me, but that’s not exactly true. It’s actually been more like a rough couple years.

I spent three years battling debilitating rib pain that nobody seemed to be able to cure. And then, when I discovered that my obscenely low vitamin D levels were likely to blame and I started to feel better, I faced an entirely new version of hell — opioid withdrawal.

I had been on morphine for three years, 24 hours a day, 7 days a week, and I honestly thought that when the rib pain subsided I could just endure 72 hours of physical hell and move on with my life.

But morphine is like an abusive boyfriend, it lingers. It hurts you and then offers you the cure, and then it hurts you again. And you always pay for the highs with desperate lows.

Studies have shown that it can take two years for your brain to adjust after withdrawing from opioids. And it turns out it doesn’t much matter if you were buying them off the street or getting them via a legitimate prescription from a legitimate doctor. Your brain doesn’t care.

And yes, I know, there are people out there who have an easy breezy time with it. They just decide to stop and then they stop.

I am not one of those people. I hate those people.

I have spent the last few months suffering from a potent mix of suicidal thoughts and anxiety attacks. And navigating the whole mess is especially hard because for some reason people think that if you are just a strong enough person, you’ll be fine. Let me tell you the truth, opioids don’t care if you are Wonder Woman herself, they will ravage you.

In the midst of all this, my best friend since childhood was pregnant with her third child. She and I are like sisters, having both endured crazy families, growing up poor and our 20’s together.

And so when she was put on strict bed rest about 27 weeks in, I said I would come stay with her during weekdays to help with her other two kids, who are both just toddlers themselves at 1 and 3 years old.

I work from home, so I have the luxury of volunteering for such things. And I confess I was pretty pleased with myself at the thought of playing a small role in making sure the newest member of their family was born healthy.

But if we’re being honest, she could have said no. She could have said that she didn’t want an opioid addict around her kids. She could have easily pointed to my debilitating anxiety attacks and said I was unfit to supervise toddlers.

Maybe she was too desperate to say anything like that to me. But I honestly don’t think she ever even thought it.

So, in late May, I basically moved in with her, her husband and two toddlers. I went from the cool chick who comes over and plays bubbles to the cool chick who has to give the kids baths, feed them, change diapers, clean up spit up, watch Sesame Street on repeat for 16 hours a day, AND play bubbles.

And somewhere along the way, I forgot that I was having a really rough couple of years.

Kids have a way of forcing you to be in the present. There’s no time to anxiously contemplate the meaning of life and whether or not you’ll ever find true love, when the meaning of life and true love are staring up at you calling you “Bistol” because the C sound is hard, and asking for another pack of gummy bears.

And I don’t care who you are, watching a child literally learn to do the most fundamental of human movements, walking, over a period of about three weeks is breathtaking and jaw dropping and mid-afternoon Taylor Swift dance party worthy.

And so, that is how one of the worst times in my life was transformed by two toddlers. Two boys who had no idea they were helping me navigate opioid withdrawal when they were screaming for teddy bears at 1 a.m., and spitting up all over the carpet, and eating rocks, and begging for ketchup, and laughing and crying and cuddling and loving.

Because that’s actually how it works, isn’t it? You think you’re saving someone, but then you realize that this whole time they were saving you.

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.

Listen to the Voices Silenced by Overdoses

By Judy Rummler, Guest Columnist

In reply to the recent article in Pain News Network about the Steve Rummler Hope Foundation, I want first of all to say that I have great compassion for those with chronic pain. 

My son Steve suffered from back pain for 15 years and many of the staff and volunteers of the Steve Rummler Hope Foundation have family members who have also suffered with chronic pain.  Sadly, many of us have lost our loved ones to opioid overdoses and we are working to prevent this from happening to other families. 

Had more cautious and responsible opioid prescribing practices been implemented before Steve died of an accidental overdose, he would have been terrified at the thought of losing access to his opioid pain medication.  He had developed the disease of addiction and had come to believe that his pills were the only solution for his chronic pain. 

Steve was a dean’s list student, all-conference soccer player and a gifted musician. He had many friends and a loving fiancée and family, yet he lost interest in almost everything that had once been important to him. 

He experienced the dilemma facing those who need treatment for both chronic pain and addiction.  Among his belongings we found a note describing his pills that said, “At first they were a lifeline; now they are a noose around my neck.” 

JUDY RUMMLER

It is important to remember that, while we can all hear the calls for relief from those who are suffering with chronic pain, we can no longer hear the 200,000 plus silenced voices of those who have died from opioid overdoses.  These people did not want to die and many of them would have lived if physicians had practiced more cautious and responsible prescribing.  Like most doctors, Steve’s doctor was well-intentioned but had received little training on the prescribing of opioids for pain.  

In an effort to provide this much-needed training, the Steve Rummler Hope Foundation has created a lecture series on “Pain, Opioids and Addiction” in partnership with the Minnesota Medical Association (MMA) and the University of Minnesota Medical School.  

These lectures are presented to medical students, videotaped and made available for continuing medical education (CME) at no cost on the MMA website.  The hope of the series is to create a medical curriculum on pain, opioids and addiction as it should be in a medical school setting: balanced, practical, evidence-based information free of commercial bias.

The mission of the Steve Rummler Hope Foundation is to heighten awareness of the dilemma of chronic pain and the disease of addiction, and to improve the associated care process.  We provide hope for those with chronic pain and addiction through our three programs: Overdose Prevention, Prescriber Education and Advocacy.  More information is available on our website.

Judy Rummler is a co-founder of the Steve Rummler Hope Foundation, a 501 (c) (3) non-profit organization based in Minnesota. The foundation recently became the fiscal sponsor of Physicians for Responsible Opioid Prescribing (PROP).

 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.

13 Tips for Living with Gastroparesis

By Ellen Lenox Smith, Columnist

Few people understand what it’s like to live with gastroparesis – a digestive disorder that slows or stops the movement of food from the stomach to the intestine. Not being able to digest food and eliminate waste properly causes abdominal pain and bloating.

Gastroparesis can develop when the vagus nerve is damaged by an injury or illness and the stomach muscles stop working properly. In my case, it was triggered by Ehlers-Danlos syndrome.

The most extreme cases of gastroparesis lead to severe nausea, vomiting, and dehydration, when urgent care may be required at a medical facility so IV fluids can be given.

You can’t allow partially digested food to ferment and become toxic in your body. There are cases where death has resulted from not being treated.

I have been searching for answers for two years now. I had times when things seemed semi-normal. But for the past three months, I have been having on and off luck with elimination and wanted to share some tips I’ve learned that may help if you also suffer from gastroparesis.

1. Changing eating habits can sometimes help control the severity of gastroparesis symptoms. It is suggested to eat six small meals a day instead of three large ones. Less food makes it easier for the stomach to empty.

2. Chew food slowly and thoroughly while drinking at least 8-ounces of non-carbonated, sugar-free, caffeine-free fluid with each meal.

3. Walking or sitting for 2 hours after a meal -- instead of lying down -- may assist with gastric emptying.

4. Avoid eating high-fat foods, because fat slows digestion. Red meat, pork and fowl should be ground.

5. Avoid raw vegetables and fruits. They are more difficult to digest and the undigested parts may remain in the stomach too long. Oranges and broccoli, in particular, contain fibrous parts that do not digest well. Acceptable vegetables might include avocado, summer squash, zucchini, or mashed pumpkin.

6. A person with severe symptoms may have to turn to liquid or puréed food, which empty more quickly from the stomach. Puréed fresh or cooked fruits and vegetables can be incorporated into shakes and soups.

7. Some doctors recommend a gluten free diet. Even mild gluten intolerance can result in the development of thyroid imbalance, which could worsen gastroparesis.

8. Fermented food rich in lacto-fermented foods such as sauerkraut, kimchi, black garlic, and kefir can also improve digestion. Bone broth is very nutritious and healing for your gut, as it contains calcium, magnesium, phosphorus, sodium, potassium, glucosamine, chondroitin, and glycine to ease digestion and soothe inflammation.

9. Believe it or not, chewing gum can make a big difference too. The act of chewing produces saliva, which not only contains digestive enzymes but also stimulates muscular activity in the stomach and relaxes the pylorus, the lower part of the stomach. Chewing gum for at least 1 hour after meals is a very effective treatment of gastroparesis.

10.  High-fiber laxatives such as Metamucil that contain psyllium should be avoided.

11.  You might want to considering giving acupuncture a try. Needles are believed to restore healthy immune and neurological function while removing blocks in your life-force energy called ‘chi’.

12.  Colonics is also something to consider and what I have had to turn to weekly to eliminate waste. A colonic is the infusion of water into the rectum to cleanse and flush out the colon.

13.  There are medications that can help. I had amazing and quick results using metoclopramide, but unfortunately ended up reacting to it and had to stop. That was heartbreaking!

Living with gastroparesis is not easy and most people connected to you have no idea the sensations it is creating in your body. Remember that eliminating is a natural and necessary process. You must rid your body of those toxins and not allow them to ferment inside you.

I hope that one or more of these suggestions will help to improve the quality of your 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.

Pain is Inevitable, But Suffering is Optional

By Rebecca May, Guest Columnist

Being a mom suffering with a chronic pain disorder is not for the faint of heart.  We need our own superhero: Super Sufferer. Able to clean up pain in a single bound!

The name might need some work.  I honestly am my own cheerleader, although I am a shadow of my former bad-ass self. But they say what doesn’t kill you makes you stronger.

I was lucky in the beginning, ten years ago. The pain started in my right arm. I could still run and dance.  Whoop it up and cause some harmless trouble.

Now, I fantasize about the thread count in my Egyptian cotton sheets. Netflix is my bestie, and I have been known to shake my pill bottles in the middle of the night just to make sure they are still there. 

The fear of withdrawal is intense. They say I am not addicted to the morphine, merely dependent. Well then, that should make me feel better, right? I am afraid that if people find out I need scary drugs to survive, they will think I am a fraud.

REBECCA MAY

What I have found is that these are my issues. Most people I share this personal information with have stories of their own. In fact, I end up knowing too much about their affected loved ones.

As chronic pain sufferers, we want to be understood. Doesn’t everyone? We will seek approval anywhere. If I catch the glance of a kind grocery clerk, they instantly become my new BFF. I have the routine and story down, including the long pauses for appropriate reactions. I turn to strangers because I don’t want to burden my family, especially my teenage kids.

I think all of us Super Sufferers have found ourselves in desperate situations. Like the 3:00 am online conversations with support group friends who also can’t sleep because of the never-ending pain.

Yet, after all the frustration, pain, and isolation, we are still here. It’s difficult to get any accurate number of suicides related to chronic pain, as many are from drug overdoses. People who seek me out either through articles or support groups are looking for someone who understands. Isolation and fear drive people to choose permanent choices.

Now that I am approaching mid-life as a chronic pain sufferer, I have to make some very difficult choices.

Do I continue to work?

The answer for me is as long as I am able. I tried staying at home. I watched Netflix until my eyes were sore. I gained weight and developed depression. I missed adult time and fresh air. After my permanent diagnosis, I thought the party was over. The truth is I just have to modify it. I installed hand bars, bought a cool cane and now I take my time.

What about exercise?

To be honest, I am not able to swing my arms and kick my knees to my chin anymore while African dancing. I can swim and do light cardio. I took up walking around the track with a friend. She knows that I may need to slow down.

What do I do for fun now?

There are people who are going to think you are faking -- that is all of them. They are not your problem. I still do most of the things I did before, with the exception of dancing and running. I love going to the movies, swimming, museums, and grabbing coffee with friends.

Set your own pace. It is okay to cancel plans. Just remind your friends that today it isn’t the best day for you. 

Rebbeca May suffers from Kienbock's disease, Complex Regional Pain Syndrome, adrenal fatigue, fibromyalgia, sleep apnea, and reproductive issues. She lives in the Pacific Northwest with her family.

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.

A Pained Life: The Insidiousness of Pain

By Carol Levy, Columnist

Nineteen years ago this November a major portion of my trigeminal neuralgia pain spontaneously disappeared.

Unfortunately, it is not the part that keeps me disabled (the eye usage and eye movement pain), but it was the worst of the pain – constant, spontaneous and the most feared. Pain that was triggered by the slightest touch; even the wisp of one hair brushing against the affected part of my face.

Every day since that wonderful moment in time I am thankful. I can stand under a shower. I can walk in the breeze. I can do all of the things that previously necessitated fear and constant surveillance.

Is it going to rain? Is there a breeze? Am I standing too close to someone and they can touch my face and trigger the pain?

Thousands of worries pummeled me, my attention focused on only one goal: to not be in a situation where the pain could be triggered by someone or something.

It is wonderful that the worry is gone. It is freeing that the conditions no longer exist.

And yet the fear repeatedly rears its ugly head.

Pain is insidious.

We know the enemy that we feel each day, every time we have to use the part of our body that creates and causes the pain.

The harm it secretly causes is not so easy to know. It is often quiet, a monster stealthily and underhandedly stalking us.

It wends its way thought our mind and brain, creating troughs of sensation memory, reminders of fear and worry. What set it off before might set it off again. What will set it off now?

It is easy to go there, even when we don't want to. It is not so easy to figure out how to reduce what fills it, much less empty it out.

Even after nearly two decades, I am repeatedly surprised by these fears. A breeze comes up and I freeze in place, someone brushes by me and I wince, gritting my teeth in anticipation of the pain.

And then. Whoosh. Oh, right. I don't have it anymore. I no longer need to be afraid.

It is a part of the effect of chronic pain that is rarely talked about. Researchers and lay people talk about the psychological implications or the emotional causes of chronic pain. They truly do not understand the long term effects of the pain on the parts of us that are hidden, maybe even from ourselves.

It does not have to be a spontaneous remission. It may be that a small portion of the pain is gone or maybe you find that you can do something you thought you physically could not, but now realize you can.

And yet the warning signal goes off in your head: Danger! Danger! Pain coming!

Stopping the alarm is hard to do. I know that for sure.

But looking inside ourselves -- searching, finding and destroying, if we can, that little voice that says, “Uh oh, pain ahead.”

Silencing that false alarm can go a long way towards removing one more obstacle in our search for a freer way of living with pain.

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.

4 Tips to Avoid Chronic Pain’s Anxiety Trap

By Jennifer Martin, PsyD, Columnist

Am I ever going to get better?  Am I going to get worse?

What is in store for me next?

Is there anything I can do to make the pain go away?

How am I going to deal with this for the rest of my life?

How am I going to take care of my family?

Am I ever going to be able to be physically active again?

Am I going to be able to work or finish school?

These are just some of the questions that run through the minds of those with chronic pain.  For a lot of us, racing thoughts and anxiety are an unwelcome companion.  The fear and anxiety come at the most inopportune times and they envelope us.  Just when we think we have put the negative thoughts out of our mind, here they come again, like a wave crashing down and trapping us.

It is so important to take control of anxiety when you have chronic pain because anxiety can actually increase pain.  It is a vicious cycle that can spin out of control if not treated. 

Anxiety often times leads to poor sleep -- and poor sleep often leads to more pain the following day. 

Anxiety also leads to negative thoughts – and negative thoughts may lead to feelings of depression, isolation, and hopelessness. 

These feelings can lead to noncompliance in treatment or inactivity, which may increase pain.  Anxiety can cause muscle tension and an inability to relax, which also has the ability to increase pain. 

Do you see where I am going with this?  Anxiety and pain are closely related.

So, if you are suffering from anxiety and a chronic condition, what can you do?  Here are four tips to avoid or diminish anxiety:

1) Distract yourself as much as you can:  When you begin to notice anxious thoughts, tell yourself “STOP” and then focus your attention on something you enjoy.  Whether it is relaxing thoughts of the beach or an activity such as painting, talking with a friend, or watching TV, distraction will get your attention away from your anxious thoughts and onto something else.

2) Exercise:  Exercise does not have to be physically strenuous.  Take a 10 or 15-minute walk while listening to an iPod or book on tape.  Stretch for fifteen minutes.  Research some gentle yoga poses.  Anything you can find that works for you that does not increase your pain is great.  Exercise can do amazing things for your state of mind and those tense, anxious muscles.

3) Find help and support:  Support groups are wonderful places.  I always tell people, “You cannot really understand what it is like to have chronic pain or a chronic illness unless you have one.”

Having a chronic condition can feel extremely lonely, even in the most crowded places.  Support groups offer a non-judgmental atmosphere filled with people who have some understanding of what you are going through.

Individual therapy is also a great option, particularly if you don’t want to talk about what you are going through with friends, family or in a group of people.  It is a great place to learn additional tools and coping techniques to help deal with chronic pain and anxiety.

4) Breathe: Research different breathing techniques.  Learning to slow your breathing when you are experiencing anxiety will not only calm your mind, it will calm your body too, thus helping your pain.

If you have chronic pain and anxiety, start today and help yourself get help.  Even if it only helps your pain a little bit, isn’t it worth it?

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness. 

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, colitis and other digestive diseases.

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

How Going Gluten-Free Changed My Life

By Lisa Ayres, Guest Columnist

I would like to share with readers my life-changing experience after eliminating gluten from my diet.

I had spinal implant surgery for spondylolisthesis about 24 years ago. For those who don’t know, spondylolisthesis is a defect in the spine that causes vertebra to slip to one side of the body. You can have spondylolisthesis without even knowing it. Someone may experience little to no pain and not know they have a “back issue.”

In my case, it got progressively worse as time went on.

After the surgery, I had physical therapy and even became certified in personal training to learn how to care for myself. I also took hydrocodone for pain, up to 3 tablets a day depending on my activities.

About 10 years ago, I also started having arthritis in my hands. They would throb after a few hours of gardening or similar use. I was told it was erosive arthritis. My toes also were affected and caused me a great deal of pain when I was on my feet without thick soled shoes.

My 24-year old daughter suffered from intestinal problems most of her life. After having pizza with friends one day, she came home with stomach cramps and was basically ill. I do a lot of research on issues that crop up in our lives and gluten intolerance kept popping up online as a clear possibility.

As a declaration of solidarity, and to make meals and shopping easier, I joined my daughter in going gluten and casein free. I found out that if one has gluten intolerance, they almost always have casein intolerance also. Casein is found in dairy products. 

LISA AYRES

It wasn’t easy for us to rid our diets of both gluten and casein, but to find out if my daughter’s illness was caused by them we had to start somewhere. On April 21, 2015, we cleared our diets and house of all gluten and casein products.

The first initial change was that my daughter appeared to get sicker. Stopping gluten is similar to stopping opioids for some people -- you go through a type of withdrawal. There are many websites, such as MentalHealthDaily.com, where you can learn more about gluten intolerance, withdrawal, and what you can and cannot eat. 

For 8 days she had severe joint pain and flu like symptoms. She said her joints felt worse than the pain she experienced when she broke her foot years before. But, her stomach discomfort began to subside almost immediately after giving up gluten and casein. By the ninth day the withdrawal symptoms vanished and she was feeling wonderful.

I didn’t have stomach problems caused by gluten, but my daughter and I live together and it would be not only unkind to eat restricted foods in front of her, it would be difficult to prepare separate meals, separate work areas, etc. So I changed my diet when she did. 

I had an unanticipated reaction. I had no withdrawal symptoms, but within 48 hours I had what can only be described as miraculous changes.

Due to the arthritis, my hands had a limited range of motion. My fingers were thick with swelling and I hadn’t been able to make a fist with my left hand in at least two years. My right hand also was swollen. The throbbing at night, sometimes without any particularly heavy use, was not only painful but depressing. Activities I had enjoyed were quickly running from my life. I was only 58-years old but felt decades older. The ongoing ache in my back was like an unwelcome guest that I could only get to leave with hydrocodone. 

But 48 hours after going gluten and casein free, I awoke, stretched, and moved my hands freely. My ring felt loose on my finger, the clench of my hands strong and flexible. 

This dietary change is a game changer for me. Plans I had put aside and tried to forget are now possible again. The pain in my back is now mainly managed with Tylenol and then only a couple of times a month. I have only taken hydrocodone twice since dropping gluten from my diet. My depression also has lessened. 

The systemic inflammation caused by the allergic reaction to gluten should not be ignored. A two week elimination diet is the best and only way to see if gluten really is the culprit. Tests currently are not accurate. 

My daughter had an emergency appendectomy and bowel re-section. It was advised by a gastroenterologist that she also get tested for celiac disease. Mind you, this is an experienced doctor.  They did an endoscopy on my daughter and the results were negative. However, the test results page included a disclaimer that if the patient had already cleared their system of gluten and there was no inflammation, the test wouldn’t be accurate for celiac or gluten sensitivity. 

The doctor didn’t tell us that eliminating gluten would “hide” her sensitivity. We only happened to have read the results ourselves. So the test wasn’t needed for her to know to avoid gluten!

Eliminating gluten and casein from your diet is the most accurate way to find out if you have an allergy or sensitivity to them.  I think many people aren’t aware that gluten and casein can cause such reactions. They hear how people are getting tested and clearing them from their diets, but when the results are negative, it feeds into the belief that being gluten-free is just a fad. 

If you are in pain, remember that gluten causes systemic inflammation which is pressing on sore joints and everything else in your body. You owe it to yourself to be as pain free as possible.

Lisa Ayres lives in South Florida. She suffers from spondylolisthesis, arthritis, and is gluten and casein intolerant.

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.

How to Connect When You Have No Connection

By Barby Ingle, Columnist

A friend of mine who is going through a rough time physically and financially has shared a thought about the people who get left behind.

We often assume that everyone is online. The truth is about 16% of American adults do not use the internet and most of them are elderly, disabled and in households with incomes of less than $30,000, according to a study by Pew Research.

What can those who have limited or no access to the online world do to stay e-connected? I did a little research and found some ways that may be helpful.

As an Extreme Time Cheater, I like to save time, effort, and energy. Although I have internet access at home, living with chronic pain still limits my life and resources. For instance, if my internet service were to go down, I don’t have a vehicle to get to a library and I’d be out of luck. My living situation is very rural and isolated.  

One of the things I would miss immediately is the ability to Google a location, fact or a phone number. When phone books come to the house from our phone company, I typically put them in the recycle bin, but I will keep my next phone book for the time when I may actually need it.

When it comes to groceries, I typically order them online to save time. Some delivery services have a fee, so I use Safeway because they offer free delivery on orders over $100. When there is a charge it is typically $5 to $10, which is very reasonable. They also let customers call in their orders if they don’t have internet access, and they don’t allow their delivery drivers to accept tips. I have my driver bring the groceries right into my kitchen. 

Next time you are at a doctor’s office or hospital, check to see if they have any support groups for people with your condition or chronic pain in general. Even if you can’t keep up with the group online, you can see them at local meetings. Having someone to connect with on an emotional level that is going through similar life challenges is really important when you are isolated most of the time. 

You can keep a hand written calendar to keep track of doctor appointments and life events on paper. Back before the internet I would take blank paper and a straight edge and make my own calendars to stay organized.  

When it comes to phone numbers, who memorizes them these days? But if you lose your cell phone service, what can you do? I keep a written notebook of all of the phone numbers and addresses in my cell phone so that if I ever lose it, I have a backup in writing and can still make a call to family or friends when needed.

Finally, advocacy. We often ask, “Where are all of the pain patients?” Why aren’t more people involved in advocacy efforts? I would venture to say that a large number are physically and financially limited, and many do not have that e-connection we all covet. How do we reach them and how can they help spread the word about chronic pain and its effects on society?

People with internet access should speak up for those who can’t be heard, recognizing the commonalities that we all share. Offline advocates can look at more traditional strategies, such as setting up a meeting at your legislator’s office or speaking to a local support group. Offline advocating is just as important as sharing a tweet or blog, or posting a comment online. 

Remember that not everyone is plugged into the chronic pain community online. Those who are not still need support, education, and assistance. They also need to have their voices heard. Let’s pay more attention and start listening to those who are currently e-voiceless.  

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.

Why IQ Isn’t Enough for Pain Care

By Pat Akerberg, Columnist

Our once patient-centric healthcare system has been upended and turned into a profit-over-people financial equation. 

Consequently, patients feel their concerns are intentionally disregarded while medical practitioners are ham strung by compromised standards. I wonder if they are as disillusioned as we are with timed, cookie-cutter treatment approaches that reinforce unsettling disconnects.

One such disconnect involves an underrated, often missing link – empathy – considered one of the most effective aspects of an outstanding healthcare practitioner. 

Empathy is compassion for the chronic illness, pain and impairments their patients endure. 

In his 2005 groundbreaking book, “Emotional Intelligence: Why It Can Matter More Than IQ,” Daniel Goleman made the case for empathy to be recognized as an essential component for emotional intelligence.

Differing from the intellectual focus of IQ, empathy is one of the 5 essential dimensions that make up ones’ emotional quotient or emotional intelligence – “EQ” for short. 

• Emotional self-awareness: Knowing what one is feeling at any given time and understanding the impact those moods have on others
• Self-regulation: Controlling or redirecting one’s emotions; anticipating consequences before acting on impulse
• Internal Motivation: Utilizing emotional factors to achieve goals, enjoy the learning process and persevere in the face of obstacles
• Empathy: Sensing and responding effectively to the emotions of others
• Social skills: Managing relationships, inspiring others and creating connections

The key point behind EQ is that it can often matter more than IQ or technical training alone.  While IQ may typically get someone hired or gain them entry, the EQ factor is what gets them promoted, predicts excellence and professional success.

Possessing both IQ and EQ is considered a winning combination in any role or field. But not everyone acquires that golden pair without awareness and training -- unless they are uniquely and naturally skilled at both. 

Our medical practitioners (regulators and stakeholders) are no exception to this.  In fact, the widespread distortions and neglect surrounding our side of the pain care equation and story clearly demonstrate the kind of harm pervasive EQ blind spots can do.

We’ve all experienced those rare physicians and practitioners who are both competent and capable of conveying a caring approach and empathetic style.  Even if medications and various treatments fall short in addressing our chronic illnesses, their support and desire to help us never falters.

It helps immeasurably to know they’re in our corner.  Physical healing may not always be possible given our circumstances, but that’s not the only kind of healing that matters. The presence of such EQ far outweighs the deficits of an approach without it.  Numerous studies confirm that such human consideration and concern delivers a positive placebo effect that can’t be underestimated. 

Pain patients already endure more than most will ever face.  We suffer even further when our practitioners and administrators lack or devalue the human understanding EQ brings.

So how effective are our practitioners at delivering that kind of humanistic medical care in our current system?

Using the 5 factors for EQ, I did a personal rating of all of the practitioners I’ve seen since the start of my trigeminal neuralgia.  It turns out that 30% on my list are high in EQ.  Unfortunately, that means that 70% fall short.

The stand out characteristics that I look for made those 30% rank far above the 70% include:

• Being personable
• Making eye contact with me (not a computer screen)
• Showing true interest in my level of pain
• Patiently and intently listening to my answers
• Being open to my questions
• Offering tailored options
• Expressing empathy or gestures of concern
• Thinking outside the box for solutions
• Collaborating
• Treating me like an important partner and a helpful staff

The reasons that some practitioners or institutions may or may not possess or demonstrate empathy vary as much as our illnesses do.  The good news is that once a person becomes self aware and motivated, EQ and empathy can be learned thanks to plasticity, our brains’ ability to change.

There’s no formal assessment that I know of that measures the damaging, stressful effects of chronic pain and illness when coupled with the double whammy of marginalized or impersonal healthcare.

However, like an IQ test, there is a formal assessment that determines a persons’ EQ status on all five dimensions.  For a better tomorrow, there’s no reason that this assessment couldn’t be required at the start of medical training programs (doctors, nurses, physical therapists) to identify a students’ strengths and needs.

Taking it further, educational institutions can also borrow from a virtual reality learning tool developed by Embodied Labs founder Carrie Shaw, which she used to increase her understanding about her mother’s experience with dementia.    

With the intention of bridging the life experience-understanding-empathy gap for young medical students, John’s Hopkins recently experimented with this technology. The project, “We Are Alfred,” gave students hands-on experience of what it’s like to be a 74- year old dealing with impairments in sight, hearing, and memory.  The simulation demonstrated that you can develop EQ skills and foster understanding between practitioners and patients by giving students a slice of what their patients have to deal with.   

Many times I’ve wished that the severe face pain that I experience could be simulated so that practitioners (and others) could experience what it feels like. I bet you have too. 

Wouldn’t it be great, even fitting, for our government to sponsor an initiative to simulate pain?  Maybe then the reality of debilitating pain would finally trump the punitive intellectual biases blocking the balanced approach EQ brings about.

Meanwhile, I’m all for efforts that aim to reinforce the message to our medical practitioners and facilities, educational institutions, government regulators, insurance companies, Big Pharma and other stakeholders that no one cares what you might know (IQ) until they know that you care (EQ).

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

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.

Fed Up With Media Coverage of Opioids

By Janice Reynolds, Guest Columnist

I got fed-up the other day with another article in the newspaper that lacks veracity and is truly not in the interests of the “people’s right to know,” as it is untrue, biased, and does not include any input from true experts.  

Where has integrity and veracity gone when it comes to the press?  I speak particularly of the Portland Press Herald, but many of the other news media also confuse opinion with fact and sensationalism with truth.

100 million people in the U.S. suffer from chronic pain related to many different causes, including cancer, yet no politician seems to care.  They are very uncompromising that an addict’s life is much more important. 

When the media is asked to show the evidence for the oft repeated claim that “studies have shown conclusively opioids don’t help chronic pain, in fact they make it worse,” requests are denied.  This is likely because there are no such studies on humans.

The one study which claimed opioids made pain worse was done on rats who had essentially been tortured – which is not evidence at all. 

Pain is pain, and chronic non-cancer pain does not differ physiologically from other pain.  With some types of pain, another medication may work better than an opioid, but most severe pain is relieved best by an opioid. 

A recent Associated Press article republished in the Portland Press Herald is an example of half-baked reporting:

“At least 43 states’ governors signed on to the Compact to Fight Opioid Addiction, committing to fight the epidemic fueled by the overprescribing of prescription pain relievers.”

There is no evidence to support this statement what-so-ever.  If you look at the history of the current epidemic, it has nothing to do with people with chronic pain.  There are many problems people want to apply to the epidemic’s cause, including the advent of OxyContin, but that is a correlation rather than a causation. Most overdoses now are heroin and illegal fentanyl related.  Blaming the overdoses on prescription drugs is pure conjecture. 

The “overprescribing” of opioids is pure opinion -- unlike the overprescribing of antibiotics, which is based on evidence and is a justifiable use of the word. 

One of the worst references in the article is the use of Andrew Kolodny.  The man is an addiction treatment doctor who his chief medical officer of Phoenix House, which operates a chain of addiction recovery centers (which the article fails to point out). He knows nothing about pain management and is a known opiophobic, yet is considered an expert on pain by the AP:

“Until recently, many policymakers believed the epidemic was fueled by drug abusers and that limiting prescriptions would hurt legitimate pain patients, Kolodny said. But now there is growing awareness that doctors and dentists are prescribing too many painkillers, which are addictive and hurting many otherwise good people, he said.”

Other “real” pain experts such as Dr. Forest Tennant, Dr. Lynn Webster, Chris Pasero and many others who are acknowledged internationally should have been quoted or allowed to give a counterpoint. 

The sin of omitting the opposition’s opinion is greater than lying outright.  When the media stacks the deck to reflect their opinion only, how can they be trusted? 

Meanwhile, people with pain suffer, many cannot even find a provider and suicides are increasing.  Insurance and Medicaid will not pay for many of the non-opioids and non-pharmaceutical interventions, and very dangerous drugs such as NSAIDs (ibuprofen, naproxen, diclofenac, etc.) are pushed. Some estimate there are 20,000 deaths a year from NSAIDs, but you don’t see that in the media. 

People with pain have become marginalized, and subjected to prejudice and bias, much of it due to media coverage of chronic pain and opioids.  Everyone should be concerned, as they are going after acute pain next.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

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

Pain Companion: Rediscovering Yourself in Pain

By Sarah Anne Shockley, Columnist

Pain is so pervasive and so enmeshed with our daily experience that we can forget what life was like without it. We may lose a sense of who we were before pain entered the picture.

When I began to return from the most intense part of my own journey with pain, I realized that I was going to have to find a way to disentangle myself from it, to disengage my sense of who I was, my identity, from pain.

At the time, I couldn’t find a sensation of body-without-pain, even in my imagination, and I couldn’t envision a future without pain, though I desperately desired it. I had forgotten who I was without pain, and I wasn’t sure who I had become from the experience.

I certainly knew I had changed irrevocably, but I wasn’t quite sure in which direction all the changes lay.

Pain had become so embedded in my body, my daily routines, and my awareness, that this constant companion had become too familiar, like a terrorist and his hostage. Perhaps this is a familiar feeling for you.

The difficulty doesn’t lie in wanting to keep pain around like an old pal, far from it. It lies in the fact that pain has been with us for so long that we aren’t sure what will be left of us when it finally departs.

Will it take most of us with it? What does it mean about who we are if pain never leaves? Maybe we’re not even sure we have an identity beyond the pain anymore.

This merging of the sense of self-identity with the self-in-pain is really important to recognize.

I found that, in order to find myself again and to re-engage with the inner me (as opposed to seeing myself only as the-one-in-pain), I had to disengage my self-image and feelings of self-worth from my experience of pain and my body’s limitations.

I worried that my injury, my pain, and my being in need of assistance had turned me into a weak and needy person. I had to realize that just because my body felt weak, didn’t mean I was weak as a person. Just because my body was in pain, didn’t mean I was being a pain. Because my pain created new needs which I had to learn to communicate, didn’t mean I had turned into a needy person.

Many of us who have been in pain for a long time have been living in reaction to pain. We have allowed pain to become the organizing principle in our lives. s the only real power in life. We might shift all our choice making onto pain’s shoulders. After all, it seems to rule everything.

This seems like the only choice there is, but there is a subtle but important shift that seems to be necessary during the healing process, and that is to move the responsibility, power, and decision-making back onto our own shoulders. This is part of dis-identifying with pain and disentangling ourselves from it.

While pain is certainly the reason we can’t do many things, we need to be careful not to allow ourselves to think that it is the director of our lives. We can make the small but vital shift in our perception of who we are in pain, as we begin to find a way out of living utterly beholden to pain and connected to it on an identity level.

As far as I can tell, this process has the potential of gradually unfolding something like these five steps:

1. Pain Arrives: We resist, we do all the “right” things, including therapies and medications. Pain doesn’t leave, so we try harder to get rid of it, adding alternative therapies, prayer, more willpower, more and different medications, etc.

2. Pain Stays: It still won’t leave. It may even get worse. The longer we live with pain, the more difficult it becomes to see ourselves beyond or through it.

3. We Learn to Work with Pain: We come to a place of honoring pain’s presence and its unusual gifts. We stop fighting against pain and begin to work with it and through it, regaining a sense of self that is not utterly beholden to pain as dictator and director. We recognize pain as something that is trying to heal itself in and through us.

4. We Realize Pain is One Aspect of our Lives, Not the Totality: Pain represents a very demanding part of our experience, but it is not who we are. It is a landscape we are walking through. Our inner selves are still intact. We learn to work with pain differently, seeing both it and ourselves from a different perspective.

5. Pain Begins to Relax, reduce, and dissolve.

Ultimately, whether pain completely leaves, or it stays for some time longer, we can let go of identifying with the pain as us, and ask ourselves who we want to become from and through the incredibly challenging experience of living with pain.

When we reconnect with our inner selves beyond the pain, we can find renewal. We can accept all of our experience with pain as part of a greater path, putting ourselves at the center (rather than pain), and live with more ease, grace, well-being, and inner peace.

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: The Art of Pain

By Carol Levy, Columnist

There was a gigantic painting in the dining room of my parents house. My mother was the artist. It was beautiful, captivating and very, very unsettling.

Dead center she had painted a person crouched down in a tight position. It has been many years since I last saw it, but as I recall one hand was held outstretched towards the viewer. This person was surrounded by triangles, each one a different color, all pointing downward towards the person in the middle.

I did not like to look at it, but I never thought through what bothered me so much about it -- until I became involved with Susanne Main's research into creative depictions of life with chronic pain.

Susanne is an associate lecturer and PhD candidate at the Open University in the United Kingdom. Using online platforms, she is exhibiting artistic renderings by chronic pain patients.

Some are in your face: this is my pain, my life. LISTEN TO ME!

Some are explanatory: this is what arthritis does to my body. Some show the emotional effects of living with daily pain.

The goal of the Exhibiting Pain project is to find new ways of communicating to each other and the medical community what our pain is, how it feels, how it effects and affects us.

The meaning behind the picture I contributed, Trigeminal Neuralgia Strikes, was obvious, even the double meaning of the title: the lightning-like strike of pain and the fact that trigeminal neuralgia strikes out of the blue.

I was very surprised by the response. One commenter felt using red for the pain made it seem “superficial," the picture not indicative of how painful the disorder can be.

But the picture also got my point across. He said it made him want to know more about a condition of which he had been unaware.

"trigeminal neurlagia strikes"

So it was successful. To me.

We often lament how people don't “get” our pain no matter how many times and ways we try to explain it. We know what we are saying. We assume that that is what is being heard.

I drew the picture some time back to denote the pain for both Trigeminal Neuralgia Awareness Day and for Women in Pain Awareness month. It never occurred to me that what I drew was not  what people were seeing. 

So often we say, "They refuse to understand." I explain and explain until I'm blue in the face and they still say, “It's not so bad” or “I had a headache like that once.” 

The one thing I rarely hear, or to be honest even thought, is maybe I am not explaining it in a way they can understand. Instead of getting frustrated or angry, maybe I need to ask, “What exactly is it you don't understand?”

Sometimes we think we are speaking the same language, but the language of pain is often so very person specific. It's like the old break- up line: “It's not you, It's me.”

I regret never talking with my mother about what she had painted. I knew her life had been hard, and that she retained a disability from her bout with polio. I did not want to truly know her sadness and suffering. I now realize her picture spoke, very clearly and with no doubt, of her own pain.

But when it does not speak, like with my picture, it may just be me. And I may need to learn the language of the listener, so what I say is what is being heard.

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 Won't Doctors Come to My State?

By Ellen Lenox Smith, Columnist

The other day at a medical exam, I was asked if I would consider helping to raise awareness about a serious issue we face in Rhode Island: doctors are rarely willing to come practice here.

My doctor’s medical practice wants to hire new physicians, but they have trouble finding a doctor even willing to be interviewed.  Many doctors in the practice are in their 50’s and will be difficult to replace when they retire.

Why is it so difficult to find their replacements?

I looked up an article written by John Kiernan called “2016’s Best & Worst States for Doctors” and began to find some answers.

To my surprise and dismay, Rhode Island is listed as the 50th worse state for opportunity and competition, and it is rated 46th for medical quality.

Overall, Rhode Island was ranked as the 49th worst state for doctors, only beating New York and the District of Columbia.

Learning this, I called the Rhode Island Medical Society to get a better understanding of  why we rank so poorly. I spoke with Steve DeToy, the Director of Government and Public Affairs. He offered to explain what was happening, not only in our state, but around the country.

According to DeToy, about 20 percent of Rhode Island’s population is eligible for Medicare. Reimbursement fees for Medicare are established by a formula and presently are equivalent to those in Massachusetts.

DeToy told me the problem is not Medicare, but the reimbursement rates set by commercial insurers, which are deterring doctors from wanting to practice here. Health plans like Tufts, United, Blue Cross Blue Shield, etc. have for years established very low reimbursement rates and there is no regulatory agency telling them what they should pay a doctor for.

These insurers may be saving costs to keep rates lower, but we are losing the chance for more medical help in Rhode Island. Why would a doctor choose to come here with huge debt from medical school knowing they could go to another state and be paid for the same services at much more reasonable rates?

The only positive aspect I found in this inexcusable and perhaps avoidable mess is that Rhode Island participates in federal and state funded health professional loan program that helps pay the exorbitant costs many doctors face for medical school loans. On average, medical school students end their education about $180,000 in debt.

In return for the loan payments, primary care, dentistry, and mental health professionals make a two year commitment to practice in communities where there is a shortage of physicians. Part-time employment requires a commitment of four years. This year, 24 such awards were given out. Last year, due to financial issues, only 14 were awarded.

Many patients in Rhode Island who live with complicated conditions are having trouble finding a doctor willing to treat them. Doctor shortages are a serious problem, not only here, but in other small and rural states where reimbursement rates are set too low. As doctors reach the age of retirement, imagine what it’s like to have trouble finding a qualified replacement to keep treating your patients.

Who can blame these practitioners? Why would you want to have less reimbursement for the same job that can be done in another state where you can get adequate compensation?

Medical professionals should earn enough to pay off their loans, support their families, and live the lives they deserve.

Where does your state stand? Do you know? We need to write our congressmen and make sure they are focused on this issue and are coming up with reasonable solutions to address this problem.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

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

How Curcumin Helped My Chronic Pain

By Judie Plumley, Guest Columnist

In 2013 I had a spinal fusion, 7 months after I had transvaginal mesh removal and reconstruction surgery.  During the operation, I contracted a severe bacterial infection in my spine called methicillin-resistant Staphylococcus aureus (MRSA). 

To make a long, painful story short, I ended up having 5 more spinal surgeries in the next year.  They did not get rid of the infection until it had liquefied 2 vertebrae and surrounding tissue. It almost killed me. 

There is extensive nerve damage, and my back is filled with rods and screws. 

During the worst of it I was on fentanyl, Dilaudid, Demerol, gabapentin (Neurontin) and oxycodone.  I spent 2015 weaning myself off the narcotics.  I was losing my insurance and I knew if I didn't, I would be in a withdrawal from hell.

I did go to two pain clinics, but just simply refused to be treated like a criminal.  I started exploring other options to deal with my pain.

Judie Plumley's spine

Since my son is a massage therapist, the first thing I started as soon as I was able was to get weekly massages while I healed.  Joseph stretched the forming scar tissue in order to allow me to move.

Next, I started using kratom, a half teaspoon twice a day.  I was amazed by the effect.  It knocked out a considerable amount of pain, but I was still spending 12 to 14 hours in bed each day.

About 2 months ago, my sister told me to try a supplement that combined curcumin – a yellow spice -- with black pepper oil. I bought it from Amazon, $15 for 120 caps. 

I am amazed with the results!  My pain is now bearable.  I can do about twice as much as I could before, and I am spending much less time in bed.

I am now in the process of getting off the gabapentin, but it is much harder than any of the narcotics.  The withdrawal is horrible.  As soon as this devil is off my back, I am done with doctors and hospitals.

curcumin

I refuse to be treated like a drug addict or a criminal.  I believe pain clinics are nothing more than a scam and that drug companies intentionally add things to their drugs to make people addicted. The antidepressants that are taking the place of opiates are even worse! Ever heard of a brain zap?

I swear, they are trying to kill us, or drive us to kill ourselves.  I don't understand why they are attacking people in chronic pain.  It's a terrible way to live.  I am lucky I have my son, a good support system, and have found something that works.  Life is hard enough as it is.

I have kept a journal since 2014.  I plan to write a book about my experience with MRSA.  Unless you’ve had it, you have no idea how dangerous and painful it is.

Judie Tucker Plumley lives in Georgia.

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.