Meet the Chronic Pain Patient Running for Arizona Legislature

By Barby Ingle, PNN Columnist

As a rare disease and chronic pain patient, I have spent over 20 years advocating for others and myself in the pain community. I’ve worked on legislation to help patients in more than 30 states, including my home state of Arizona, where two of the bills I supported have become law.

I am now running for the Arizona House of Representatives from District 7, which includes Pinal, Gila, Coconino and Navajo counties, as well as the cities of Flagstaff and Apache Junction, where I live.

My campaign focuses on healthcare access, pain management and disability rights. I believe that everyone should have access to individualized healthcare and proper pain management. This can get people working again and participating in society, which would ultimately save taxpayers money.  

In a recent interview with the Arizona Liberty Podcast, I shared my experiences running for office as a chronic pain patient. I explained that I was running to help make a difference in my community and to create positive change for those often overlooked by the political system. 

As a patient with algoneurodystrophy, a severe nerve disease also known as Complex Regional Pain Syndrome (CRPS), running for office is not an easy task. I have faced many challenges during my campaign, including physical limitations and the need for frequent breaks. Sometimes I have to sit down while everyone around me is standing.  

I am determined to push through these challenges to make a difference. I believe my unique perspective as a chronic pain patient can inspire others to engage in the political process and advocate for their needs. 

In addition to my campaign work, I am a motivational speaker, author, and the immediate past president of the International Pain Foundation. Over the years, I have used my platform to raise awareness about chronic pain and to advocate for better treatment options. Education and awareness are crucial to improving the lives of those with chronic pain. 

My campaign has made waves in my district and garnered attention from the pain community, with financial support and endorsements from patients and providers. Volunteers are also helping me get the word out about my candidacy.

I want laws that restore the patient-provider relationship and give pain management providers the ability to treat each patient individually.

I want to change Arizona’s “red cap” law, which requires all Schedule II opioids dispensed by a pharmacist to have a red cap, in addition to a warning label about potential addiction. The label is fine, but the red cap stigmatizes pain patients and the medications they need. 

We are also currently short about 5,000 healthcare providers in Arizona, a state that attracts many senior citizens and patients with chronic or rare diseases who need specialized care. We must address that so all Arizonans can get the healthcare they deserve.

I hope my dedication and perseverance will inspire others to fight for their communities and better healthcare options. Despite the adversity we all face, positive change is possible.

You can learn more about me and my campaign at barbyingle.com.  I hope to get your vote in the Republican primary on July 30, 2024. 

Why I Am Stepping Back from Patient Advocacy

By Barby Ingle, PNN Columnist

Each year at Thanksgiving, our family has a tradition of choosing a community project to support. Every year we do something different: caroling, feeding the homeless, or spending time at the local nursing home. But 2006 was different. The year before, I was diagnosed with Reflex Sympathetic Dystrophy (RSD), a chronic nerve disease that my late stepsister also developed.

We had much trouble getting help and care, so at our Thanksgiving dinner in 2006, we decided to start a 501c3 nonprofit to support the RSD community. Although we had joined other support groups and worked with other nonprofits, it was not what we expected. We wanted to be something different. We wanted to be inclusive of patients, caregivers, providers, legislators and providers treating RSD specifically.

But after the first year, we saw that the same challenges we were working to overcome with prevention, diagnostics, treatment and long-term care were happening to many patients dealing with other chronic pain conditions.

BARBY INGLE

Since helping to start the Power of Pain Foundation – also known as the International Pain Foundation (iPain) -- I learned a lot. I went to classes to learn more about RSD, as well as over 150 other chronic and rare disease conditions.

I would say I became an RSD expert, and over the years taught many healthcare professionals, patients, caregivers and industry leaders about treatments, long-term outcomes, and how to navigate the system from the patient point of view.

I have learned that not every patient wants help, not every patient needs help, and not every patient wants the help that you can give. Having a degree in social psychology was helpful. I understood why there are haters, naysayers and pessimists in the pain community. They are in all of society, why would they not be in our community? 

I remember when I was coaching Deb, our marketing director, she would tell me: “Everyone needs a break sometimes. Take your vacations, take your days off, and leave the job behind.”

Well, when you have a chronic illness, you can’t just leave it behind. I have tried. However, you can take time for yourself. It is not your job to help everyone, even if you want to. It is even more necessary to take care of yourself first.

Therefore, I am following Deb’s advice and stepping back. Mostly it’s because I grew tired of the negativity and hate that comes from being in the leadership position that I was in. Whenever we did an iPain project or chose a “Hero of Hope” recipient, I was thanked and would tell people that I only had one vote. But some did not understand that I literally had just one vote.

Today, I have no vote. As of January 1, 2023, I am no longer President of the iPain Foundation. I still love iPain, and I am still going to volunteer for projects and events. But I am going to take the next two years to do other projects and things for me as a patient, wife, sister and human.

The amount of hate I received over the years for doing something that I have passion for became just too much. I was often told, “You only get to do this because of your position” and “If I was in charge, I’d do it differently.”

To those who said that, watch what I do next. You can do many things, whether you have a position of leadership or not. You can take classes (there are many great ones online) and learn how to do the things you think are important. I have done that and will continue to do it. I will show the pain community that you can do big things without a leadership position. Yes, you can be a leader in action, without the title.  

I wish the 2023-24 leadership of iPain all the best, and hope they succeed everywhere with all they take on, create and produce for the pain community. I am glad to have the stress of the job off my shoulders. Am I done? Yes, I am out!

We will see if I join another board of directors in the future, but for now I will do what I have always done as a pain patient: go into the world to make a difference. I am excited to get back to writing columns for Pain News Network and iPain Living Magazine. I am working on a few more books to publish, some additional presenting, and working on legislation in the coming years.

I have a few of my bucket list items to check off, and I will go on more life adventures with my husband, Ken. Most of all, I will be excited to say more and do more of what I want to do, and not out of obligation for a position I was voted into.  

To the pain community: Be good to each other. Remember you get the help you can be given, not always the help you need. The anger, frustration and negative feelings you face are yours. They are normal feelings for a person in pain, but please also remember the person you reach out to for help may not be able to provide the help you want.

Keep going forward. The help you need is available, how you get there is optional. Taking out those negative feelings on others, especially the ones closest to you, is the ultimate way to drive others away. It is your choice. I choose to get out of the negativity and to work on making a difference. To be a little bit more concise, “You be the best you, I will be the best me, too.”

It can be a win-win situation for us both, which is always good. 

You can find me on my personal social media, you will see more articles from me at PNN and other outlets, and you can always check out my personal website to find out what I am up to next. There will be much more to come, and I promise to continue to make a difference and help in ways that I can. I hope I motivate you to do the same for yourself.  

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts over the years. You can follow her at www.barbyingle.com 

How Has the Coronavirus Affected You? Take Our Survey

By Pat Anson, PNN Editor

Are you worried about becoming infected with the coronavirus? Are you self-isolating at home? When you go out, do you wear face masks and gloves? Can you even find face masks and gloves?

Those are some of the questions we’re asking in a survey designed to measure the impact of the coronavirus on people living with chronic pain and/or chronic illness. PNN is partnering with the International Pain Foundation (iPain) and the Chronic Pain Association of Canada (CPAC) to see how people who are most vulnerable to COVID-19 are coping with a life-altering pandemic.

“We are all aware of the coronavirus and the effect it is having on our society as a whole. However, many don’t realize the negative effects it has on people living with chronic pain. Chronic pain sufferers often have conditions that render them more vulnerable to this virus than the general public. And we are concerned about access to vital medical services and medications that patients require on an on-going basis,” says Barry Ulmer, Executive Director of CPAC.

“It is important that as many people as possible take the survey. That will allow us to measure the impact of COVID-19 on people with chronic pain or chronic illness and then address those problems with our policymakers and regulators. This is important so please take a few minutes to participate.”

“People with chronic conditions are more vulnerable to catching a cold, viruses and other communicable diseases,” says Barby Ingle, the founder and president of iPain. “Many are isolated at home, have little contact with the outside world, and are unable to get protective gear such as masks. That increases their anxiety and stress, which can worsen their underlying condition.

“More personally, as a pain patient who is at high risk for the coronavirus, I would love to connect and evoke discussions with people who are dealing with a dehumanizing experience.”

Vulnerable Populations

Who is most vulnerable to COVID-19? A study of people infected in China found that those over the age of 80 have the highest fatality rate of any age group -- nearly 15 percent -- followed by people in their seventies (8%) and sixties (3.6%).  The study found that cardiovascular disease, diabetes, chronic respiratory disease, hypertension and cancer also raise the risk of death.

The CDC goes a bit further, warning that obesity, smoking, poorly controlled HIV or AIDS, and prolonged use of corticosteroids, prednisone and other immune weakening medications also increase the risk.

In a recent column, Dr. Lynn Webster suggested that chronic pain may weaken immune systems.

“People with chronic pain may be more susceptible to viruses in general, because chronic pain can change the way our immune systems work. McGill University researchers found that chronic pain changes the DNA in T-cells, a type of white blood cell essential for immunity. Researchers were surprised by the number of genes affected by chronic pain,” Webster wrote.

Our survey should only take a few minutes. You’ll be asked a series of multiple-choice questions. Select the answer that best describes your situation or leave it blank if no answer applies to you. You'll have an opportunity at the end of the survey to provide more detail or discuss other issues and concerns.

To take the survey, click here. Your feedback is important!

Valley Fever Spreading in U.S. Southwest

By Barbara Feder Ostrov and Harriet Blair Rowan, California Healthline

Valley fever cases are on the rise in California and across the arid Southwest, and scientists point to climate change and population shifts as possible reasons.

California public health officials documented 7,768 reports of confirmed, suspected and probable new cases of the fungal disease as of Nov. 30, 2019, up 12% from 6,929 in the first 11 months of 2018.

The increase is part of a recent trend in the nation’s Southwest dating to 2014, with outbreaks most prevalent in California and Arizona. Nationally, public health officials reported 14,364 confirmed cases of valley fever in 2017, more than six times the number reported in 1998, according to the U.S. Centers for Disease Control and Prevention.

Valley fever is caused by a Coccidioides fungus that lives in the soil of California’s Central Valley, Arizona and areas of other Southwestern states prone to desert-type conditions.

Animals and people can contract the infection by breathing in dust that contains the microscopic fungus spores. The infection is not transmitted from person to person.

Symptoms can include fatigue, cough, fever, headache, muscle aches or rash. While the majority of people infected experience mild flu-like symptoms or no symptoms at all, as many as 10% develop serious, sometimes long-term lung problems, including pneumonia.

‘I Am So Tired’

PNN columnist and iPain founder Barby Ingle – who lives in Arizona -- came down with valley fever last month. It was originally diagnosed as bacterial pneumonia, but when Barby’s fever, coughing, headache and joint pain persisted for weeks, her doctors ordered another round of tests.

“A CT scan was ordered that showed that it was actually valley fever pneumonia and that it had spread from the right lung to both lungs and lymph nodes,” Barby explained in an email. “I am told it will be up to a year of treatment and that they will do x-rays, CT scans and blood tests monthly, that there will be permanent scars on my lungs, and that it can turn to meningitis and/or can cause death if not treated.

“I am so tired. I feel like someone really big is sitting on my chest. I have learned that when breathing is compromised, the pain I deal with daily has becomes secondary. The brain concentrates on just breathing.”

BARBY INGLE

Barby has been on oxygen therapy since early November and recently started taking anti-fungal medication. Her immune system was already compromised by Reflex Sympathetic Dystrophy (RSD) and other chronic illnesses.  

“I asked my pulmonologist if I should move and she said if you go to another region, you will just get what they have there. It may not be valley fever, but every region has something like this that people with poor immune systems are more susceptible to,” said Barby. “She told me to ride with my car on recirculated air instead of outside fresh air setting. That is most likely where I was exposed.”   

About 200 Americans die from valley fever every year, according to the CDC. Researchers are working to develop a vaccine for both humans and animals.

Federal health officials say the infections likely are underreported because not every state requires public disease reporting for valley fever and because some infected people never develop symptoms or seek medical care.

Dr. Royce Johnson, a valley fever expert, recalls treating about 250 to 300 cases a year when he arrived in rural Kern County in the 1970s. As of Nov. 30 this year, Kern County — now a hot spot for the disease — reported more than 2,700 confirmed, suspected or probable cases, according to the California Department of Public Health.

“This is a major, major health problem, and it’s growing,” said Johnson, medical director of the Valley Fever Institute at Kern Medical in Bakersfield. “The extent of the endemic area is increasing, and the number of cases in the whole Southwest is going up.”

A University of California study examining the financial toll of valley fever on California estimated the direct and indirect lifetime costs of 2017 cases at about $700 million, when considering treatment expenses, lost productivity and mortality.

Researchers attribute the spike in cases to a number of factors. There’s more awareness of the disease because of media coverage and public health campaigns. California has earmarked $2 million for a public awareness campaign, and employers in regions of the state where workers are at higher risk for the disease will be required to educate them about the disease.

Population growth in the American Southwest, where the fungus is endemic, also plays a role, both because of the increased pool of patients and development that disturbs the soil. In Kern County, which reports the majority of California’s cases, the population has grown 65% since 1990.

But the most significant factor may prove to be climate change, which expands the ecosystems where the fungus can flourish. Using climate models, UC-Irvine researchers projected that by 2100 the expanse of areas with hot, dry conditions favored by the fungus could double and the number of valley fever cases could grow by 50%.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. Additional content was added by PNN.

Learning How to Live with Chronic Pain

By Barby Ingle, Columnist

When I became so debilitated by chronic pain and doctors could not figure out what was going on, I could no longer hold my life together. It was a minor auto accident that triggered crazy symptoms that didn’t make sense to me or my doctors.

When the first symptoms of Reflex Sympathetic Dystrophy (RSD) began, I thought I was being ridiculous. The pain was overwhelming. It took all of my attention and energy just to be able to focus. It felt a burning fire in my face, neck and shoulder, and my skin became discolored. I also started having balance issues and falling.

I remember at a practice I was working with a male cheerleader and we did a stunt. Everyone around us was yelling, “Coach, stand up straight. What are you doing?”

I kept saying I was straight, but then I looked down. I didn’t even know how he was holding me up in the air. I was in the weirdest position; legs bent, leaning forward, arms not in the right place. Until I saw what my body was doing I had no idea what everyone was so upset about. 

I was coaching, heading to counseling appointments, chiropractors and neurologists, and sleeping in my office or wherever I could find a place to sleep. It wasn’t solid sleep. It was for 20 to 45 minutes at a time. I was overwhelmed physically and emotionally, not being able to coach like I wanted, but still trying not to let my team members down.

I wish I could go back and help them understand what I was going through. I wish I had let go of my job sooner so that they could have had a better year. I didn’t know that what I was dealing with was not going to be as easily overcome as endometriosis was. That was a struggle that made me believe everything was just a challenge that I could get past. Not this time. It was going to take years, financial strain, and learning new life skills. I just didn’t know it. 

I was no longer able to handle my dream job of coaching cheer and dance at a Division I-A university. My business started to crumble and eventually closed. My husband stopped supporting me emotionally and physically. I didn’t have the energy to take care of me and him any longer. One good thing that came from it was that after our separation he found God, and was baptized into the Catholic Church the next Easter.

The biggest reason our marriage fell apart was he had me feeling that it was all in my head, and tried to convince my family and our friends of the same. My psychologist and psychiatrist both told me he was wrong. What I had was situational depression and they assured me what I was going through was normal. They had faith in me and helped me get faith back in myself. 

We began marriage counseling before the accident because of our struggling relationship, but that was no longer an issue because the relationship was over. We were divorced within 3 months of filing for separation. Now I needed help getting my new life in order and to continue counseling, until I felt I had the life tools I needed to be the best me I could be.  

I rated the physical pain I had from the accident in the beginning as a level ten. I did not think I could take anything worse. But as each surgery or procedure was performed and the pain only worsened, I wanted sometimes to have that first pain back.

As our bodies get “used to the pain,” it sometimes gets easier to manage and deal with. With each additional trauma and spread of RSD, the pain I thought was unbearable becomes a livable level. But I wasn’t living.

“Reflex” is any process in your body that automatically goes haywire. “Sympathetic” is your sympathetic nervous system, which makes you feel like you are on fire and you can’t put it out. “Dystrophy” is the loss of muscle and bone, which left me in a wheelchair for many years.

As an athlete, it was difficult to understand how working out and pushing myself were making me worse, but it was. Pushing myself too far taught me that it can cause damage. I realized that doing this was creating further damage to my body and pain pathways. I learned that trying smarter is more important than trying harder.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy 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.

When Life Doesn't Turn Out Like We Planned

By Barby Ingle, Columnist

Most of my conscious thoughts start when I was 4 years old. I knew then who I was going to be when I was an adult, or at least thought I did.

My parents thought I would change my mind. My dad even told me, “No, you can’t be a cheerleader the rest of your life.”

They were sure I would have children that would pester me, like I did them. They were sure that we all grow up and become the adult that society makes us into. I am over-simplifying life, but that is what we do to stay happy, positive and lighthearted.

I knew I was made to motivate and inspire others for as long as I can remember. I knew I would be a cheerleader for life, that I wouldn’t have children of my own, and that I would be organized and hardworking. Those beliefs I held as a child, I still hold today, for the most part. I knew all of this at age 4 and all of it came true and more.

The “more” is the life I live in the present, at age 44. The road of life that brings changes, roadblocks, boulders, mountains, and stoplights is constantly changing and unpredictable. I didn’t know what tomorrow will bring.

One day, all the roadblocks hit at once. I was 29 and never imagined anything like the life I have now. It was devastating for a while. I eventually realized that this is just life. I have the power and choice to make mine happy and productive. Things are going to happen that are great, devastating, happy, sad, and every level in between.

It shouldn’t take 3 years and 43 providers to get a proper diagnosis. But it did. Everyone should be able to live the life that they want. But most of us can’t. According to one survey, only 1 in 11 people are working in their childhood dream job.

So, what do we make of life when chronic illness strikes? Is life over?  I think not. I found a way to change my new realities so that -- even in pain -- I was living my dreams.

I think it would be even easier if you are among the 10 of 11 people who didn’t realize your destiny. Maybe you have been doing it all along. No matter if you know your destiny or are making it up as you choose, in each moment the core of you is the same.

Let’s face the challenges of living with chronic pain with more positivity, optimism and motivation. When the world gives us lemonade, we make margaritas. When it takes away the chocolate, we find new ways to make dessert.

I know my message may be hard to hear if you are a pain patient. So I will share a few tips on how I keep myself moving, keep being ME, and hopefully inspire you to look at life in a new way, when it’s not turning out as planned.

First, I realized that I can’t control all the things that happen to me, but I can decide how I will react to what happens. I can plan and counter-plan, and then make the best of the new reality.

We all have our stories. That is what we are creating here on earth. Stories should be shared. Sharing them can be a decisive action. Some are mere ripples and others can be tsunamis, meant to teach us and those with whom we share a new life lesson.

No one story is sadder or happier than anyone else’s. Life and how we react to it is what matters. You can choose your path, make a new one, or follow others. It really is up to you.

Developing a chronic illness changes how we see life. Pain changes everything about life. When a roadblock comes your way, take a step back, look around to explore the whole picture, and decide how you’d like to respond.

We must learn to be brave facing our new reality. When something does shake us to our core, we must take the time to face it, understand the emotions of the situation, and realize that tomorrow can be a better day. Being honest with myself, especially when things don’t go my way, reminds me to hold on for one more day. Things will change, even in the darkest of moments. Hold on and you can make it through.

Take the time to understand yourself, learn your new boundaries, test those boundaries, and know that it’s not your fault. Life just is what it is. What can you do to make it better for yourself?

It is important to be open to new treatment options, new health discoveries, and new life experiences (or old ones being done in a new way). Hanging on to what could have been would make me bitter and resentful.

Finally, remind yourself constantly that pain won’t get you down forever. It takes work to create the life that you want, and you may fail at times. It doesn’t mean that you are worth less, that you are not going to be successful, or that you can’t change the outcome to something more positive.

How you choose to respond is what matters and that is what life’s all about.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy 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.

How Have the CDC Opioid Guidelines Affected You?

By Pat Anson, Editor

Next month will mark the one year anniversary of opioid guidelines released by the Centers for Disease Control and Prevention – guidelines that discourage primary care physicians from prescribing opioids for chronic non-cancer pain.

At the time of their release, the CDC estimated that as many as 11.5 million Americans were using opioid medication daily for pain relief. Many of those patients now say their doses have been abruptly lowered or they are unable to obtain opioids at all.

That could be a good thing, depending on your point of view about the nation’s so-called “opioid epidemic.” Former CDC director Thomas Frieden, MD, has called the guidelines an “excellent starting point” to stop an epidemic fueled by “decades of prescribing too many opioids for too many conditions where they provide minimal benefit.”

Many pain patients disagree, saying they’ve used opioids safely and effectively for years. They say the guidelines have had a chilling effect on many of their doctors and are being implemented in ways that go far beyond what the CDC intended.  

“Last year, when the CDC ‘recommendations’ came out, the entire building of the only doctor's office I can go to decided they were rules, and cut me from 210 mg/day morphine to 90 mg. Now they say they can only give me 60 mg/day,” wrote Eli, one of hundreds of patients we’ve heard from in the past year.

“I'm in so much pain I can't properly care for myself, nor get to town for supplies when I need them. I've become increasingly more disabled and dependent on others.”

“My pain management doctor told me that the CDC required that all morphine be taken away from all Americans,” wrote a California woman who suffers from severe back pain. “He even stated that surgeons were sending home their post-surgery patients with Motrin, nothing else.

“What are you people in the CDC doing? Don't you realize how paranoid doctors can get? You may think using the term ‘guideline’ will help them understand what you are trying to do, but you have created a bunch of neurotic paranoids. Stop it. Do something before you kill all of us.”

“I am a 76 year old intelligent woman who is not an addict or an abuser, yet I am denied relief from unremitting pain even after 20 years of trying every drug and treatment modality available,” wrote Roberta Glick. “I am at a total loss as to what to do, how to fight, etc.  My physician is a strong supporter.  He is not the problem. He also is a victim of misguided CDC attempts to curb drug addiction.”

Are the CDC guidelines voluntary or mandatory? Have they improved the quality of pain care? Are patients being treated with safer and better alternatives? Most importantly, are soaring rates of opioid abuse and addiction finally being brought under control?

Those are some of the questions Pain News Network and the International Pain Foundation (iPain) are asking in an online survey of patients, doctors and other healthcare providers.

“I strongly believe that as these guidelines are implemented by doctors and hospitals around the country there are important lessons to learn from those who are affected by them,” says Barby Ingle, president of iPain and a PNN columnist.

“I hope that pain patients and providers participate in this survey so that we can begin to show how deep the impact actually is to the chronic pain community one year later.” 

The online survey consists of less than a dozen multiple choice questions, which should take only a few minutes to complete. Please take time out of your busy day and complete the survey by clicking here.

The survey findings will be released on March 15th, the first anniversary of the CDC guidelines. By taking the survey, you can also sign up to have the results emailed to you.

What to do Before Seeing a Doctor

By Barby Ingle, Columnist

When I first started having chronic pain issues, I would go into the doctor’s office and expect them to fix me. But we were talking two different languages and I was getting nowhere fast.

Learning to communicate with your doctors is important in your treatment plan. To do this most effectively, it is important to prepare. Improving your communication skills will lead to better treatment and pain relief.

Before seeing a doctor, try to put your thoughts in order so that you can accurately describe what you are experiencing. On days like the past few weeks, when I am in a full body flare and my pain is very high, my brain starts to mess up my words and even normal conversations become difficult.

Times like these made me realize that I had to get organized and prepare a checklist for my doctor visits. It’s part of becoming your own best advocate.

You can start by answering questions, such as “What did I do since I last saw this doctor?” Review past treatments and ask yourself, “Are they working and what makes the pain better or worse?”

It is good to keep a journal of your activities and pain levels so that you can reflect on these questions. Keeping a journal helps me organize my thoughts and answer these questions more precisely and accurately.

When you keep track of your pain, you gain a better understanding of what causes it, and what activities help or hurt. Prepare a personal history, be brief, and stick to the needed information on your checklist. If there are any concerns about your medications or if you would like to try a different medication you have researched, be able to explain why to your doctor.

Another important step is getting your emotions under control. I have found that if you go into the office showing frustration, anger, anxiety or other negatively perceived emotions, the doctor will be less likely to provide you with useful tools. Providers will focus on your mental status first.

I experienced this phenomenon a lot in the beginning of my search for proper treatment and diagnosis. So many doctors said, “Do you want to get better?” or “It is all in your head, so I can’t help you.” One physician even told me, “Try a different doctor. I am stumped and these symptoms don’t make sense.”

Letting your emotions get the best of you at the doctor’s office will create trouble. If you prepare ahead of time, you may still have these emotions, but you will be better able to keep them under control. You will also have a more productive doctor visit by staying on track and progressing forward with a treatment plan.

Go into the appointment having evaluated yourself and your symptoms. Keep yourself in check, stay calm and positive, and assist the doctor with finding the answers so that the outcome will be more beneficial for you.

Every provider is not the same. One of the most important decisions confronting patients who have been diagnosed with a serious medical condition is choosing a qualified physician who will deliver a high level and quality of medical care. Finding the "best" doctor to manage your condition, however, can be frustrating and time-consuming unless you know what you are looking for and how to go about finding it.

In the beginning of my ordeal, I followed what the doctors told me to the letter, even when I had doubts about their recommendations. My focus was on getting better and I was brought up to believe that doctors knew better and had all the answers. It took me almost three years after my accident to realize that this was a complete myth. Healthcare providers are human too, and they can make mistakes.

When preparing to see a provider it’s important to know your needs so you can be assertive and ready to listen to their instructions while in their office. Try to find a close friend or family member who can attend with you or record the exam on your smartphone so you can refer back to it between appointments.

The day before or on the morning of an appointment, write your questions out. I create a one page checklist that includes my medications/dosages, what I need a refill on, current issues, ongoing issues, past procedures, and questions. I use this checklist to guide my appointment so I cover everything important. I put my thoughts in order so that I get the best care possible.

Another time this comes in handy is in an emergency situation. About a month ago, I had to head to the emergency room after breaking my foot. I was simply walking in my house and walked into a wheel of a suitcase. My bones are fragile and I knew instantly from the sound and the pain that my foot was broken. I grabbed a copy of my latest checklist and headed out the door.

When the nurse came in to take my history and vitals, the pain was overwhelming, but my checklist answered most of her questions. I didn’t have to concentrate on making sure she got the right information, as my brain was clouded with severe pain at the time. That helped her help me. Being prepared is an essential element for proper diagnosis and treatment.

In my next column, I’ll have some tips on what to do during the actual visit to a doctor.

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.

Power of Pain: Tools for Today and Tomorrow

By Barby Ingle, Columnist

Taking each challenge one step at a time can help you gain perspective on your future. There are multiple aspects to pain management to be considered, such as physical and mental health, trends in the healthcare industry, and personal injury liability. Learning about them and putting life into perspective can help us deal with behavioral changes, social isolation and spiritual concerns. 

Understanding that pain causes depression, not the other way around, can be a good place to start. Realize that you have control over your actions, and feeling bad is not a proper excuse for treating others poorly. Doing so can lead to social isolation.

You may not feel like having others around or it may make you self-conscious about losing the ability to do simple activities with them. But creating a support network and staying socially involved can increase your quality of life as a chronic pain patient, as well as increase the human connection that we all need.

Once again, I need to emphasize proper communication for better treatment, attitude, and comfort. Working with your social network, finding out about future trends, and what your doctor has learned can help you keep the pain perspective.

Have hope that a cure will develop. If a new procedure becomes available, you will be prepared and have the support of those around you. When you hear of positive news like a new treatment, ask your doctor about it and if they are willing to give it a try. Find out if it is just another gimmick or if there is real science behind it. Be sure to do your own research and be comfortable with your choices. 

With chronic pain diseases, you have to be your own advocate and motivate others to advocate for you. If you were injured through someone else’s negligence, find out the legal consequences and if any action can be taken. Speak with a personal injury attorney to find out if you have a case. If you do, he can instruct you on how to arrange payments for medical treatments and how the lawyer will be paid. Question if the defendant is responsible for your bills now or if you have to find a way to cover your medical bills and be paid back when and if you win your case.

It is also important to know what happens if you don’t win your case. Ask if you will have to pay charges your lawyer paid to prepare the case or if you have to pay liens. Liens are holds or rights to property or monetary gain on property. Many doctors’ offices will put liens on your case. This means that they get paid before you receive any awards.

Becoming prepared for these new life changes will keep the perspective to your new life on a positive track. Use your community resources such as food banks, church support groups, and non-profits to get the help you need. Help is there, you just have to be willing to take it and put in as much as you can to keep your life on track.

Because chronic pain and bad health in general weakens the immune system, your ability to heal and fight diseases is also compromised. I often can catch someone's cold by being near them through physical contact, such as hugs or sharing candy out of the same dish with a child who has dirty hands.

Often as a pain patient I do not want others to touch me, both for my health and because -- unless they really know me -- they don’t know where it hurts. So I usually ask people not to touch me without asking.

Be prepared to face the pain and have a plan.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of 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.