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?”

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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.

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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 FoundationShe 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 FoundationShe 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.