Don’t Put All Chronic Pain Patients in the Same Basket

By Carol Levy, PNN Columnist

I recently read an article in KevinMD. The author, a family doctor in Maine, wrote about the need for more behavioral (mental) health treatment in primary care settings:

“We are doing that with chronic pain. Any patient who needs ongoing pain medication is required to attend four individual sessions to learn about what pain is, how the brain is the center of the pain experience, and how our pain experience can be altered by internal and external factors. We don’t use ‘pain scales’ for the simple reason that pain is never objective.”

As I read that, my blood boiled. I am sick of this concept that those of us with chronic pain need to be educated on how pain works, how our brains work, and how our pain can be mediated or controlled by mental health therapy.

Does a patient with cancer or arthritis need to be “educated” on how their brain works? Are they taught that the brain is the center of their health problems? Are they instructed with mumbo-jumbo about how their conditions can be “altered by internal and external factors”?

Or are they told what treatments are available for cancer or arthritis and how to deal with the symptoms?

It is not that I think education is unnecessary. The more we know and can understand about how our pain works, the better. It is important for patients with all diseases, not just ours, to know what we can and cannot do, what will make it worse, and what might help make it better.

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But, once again, chronic pain patients are treated differently.  We can assist in our treatment only if we learn to change how we think and react to the symptoms.  

After I took a few deep breaths I calmed down. And gave it some further thought.

It occurs to me that the medical community often puts chronic pain conditions into one basket. But chronic back pain is not the same as pain from CRPS or trigeminal neuralgia. And rheumatoid arthritis and Ehlers-Danlos syndrome are not on the same level physiologically or psychologically as tension headaches.

It’s as though all cancers were considered as one. As though basal cell carcinoma - the least dangerous of cancers -- requires chemotherapy and radiation just like breast or lung cancer.

Many of us already have to fight not being accepted or believed by families, friends and colleagues. I wonder if it is time to put some of that energy into working with medical providers so they will accept that not all pain is the same.  And our needs should be treated as any other chronic medical condition.

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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.

Fibromyalgia and the High Risk of Suicide

By Pat Anson, PNN Editor

Studies have shown that fibromyalgia patients are 10 times more likely to die by suicide than the general population, and about three times more likely than other chronic pain patients.

What can be done to reduce that alarmingly high risk?

One possible solution is for fibromyalgia patients to visit a doctor more often, according to a new study published in the journal Arthritis Care & Research.

Researchers at Vanderbilt University Medical Center analyzed health data for nearly 8,900 fibromyalgia patients, finding 34 known suicide attempts and 96 documented cases of suicidal thoughts – also known as suicide ideation. Then they looked at how often the patients saw a doctor.

On average, patients who had suicidal thoughts spent 1.7 hours seeing a doctor per year, while those who did not have suicide ideation visited a doctor an average of 5.9 hours per year.

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The difference was even more substantial for those who tried to commit suicide. Fibromyalgia patients who attempted suicide saw a doctor for less than an hour a year, compared to over 50 hours per year for those who did not try to kill themselves.

“Fifty hours versus one hour – that’s a staggering difference,” said lead author Lindsey McKernan, PhD, a professor of Psychiatry & Behavioral Sciences at Vanderbilt University Medical Center. “They might have been at one appointment in a year and this disorder, fibromyalgia, takes a lot to manage. It takes a lot of engagement.”

Fibromyalgia is characterized by deep tissue pain, fatigue, depression, insomnia and mood swings. Because fibromyalgia is difficult to diagnose and treat, there is a fair amount of stigma associated with it and patients often feel like they are not believed or taken seriously by their family, friends and doctors.

Self-isolation could be one reason fibromyalgia patients don’t visit a physician as often as they should.

“If you really break it down the people who were having suicidal thoughts weren’t going into the doctor as much. I think about the people who might be falling through the cracks. Chronic pain in and of itself is very isolating over time,” said McKernan.

“Perhaps we can connect those individuals to an outpatient provider, or providers, to improve their care and reduce their suicide risk. We also might see patients at-risk establish meaningful relationships with providers whom they can contact in times of crisis,” said senior author Colin Walsh, MD, a professor of Biomedical Informatics at Vanderbilt.

In addition to seeing a primary care provider or rheumatologist, researchers say fibromyalgia patients should be getting regular exercise and physical therapy, and working with a psychologist or mental health provider.

“We looked at thousands of people in this study and not one who received mental health services of some kind went on to attempt suicide,” McKernan said.

“Often, when you are hurting, your body tells you to stay in bed. Moving is the last thing that you want to do. And when you are tired, when your mood is low, when your body aches, you don’t want to see anybody, but that is exactly what you need to do — contact your doctors, stay in touch with them, and move. It really can make a difference.”

Back Pain Raises Risk of Mental Health Problems

By Pat Anson, Editor

Back pain is the world’s leading cause of disability, but a new international study has documented the toll it also takes on mental health.

British researchers analyzed data for nearly 200,000 people in 43 countries and found that back pain sufferers were three times more likely to be depressed and over twice as likely to experience psychosis.

“Our data shows that both back pain and chronic back pain are associated with an increased likelihood of depression, psychosis, anxiety, stress and sleep disturbances,” said Dr. Brendon Stubbs of Anglia Ruskin University.

“This suggests that back pain has important mental health implications which may make recovery from back pain more challenging. The exact reasons for this are yet to be established.”

Stubbs and his colleagues say their findings, published in the journal General Hospital Psychiatry,  were broadly similar across all 43 countries. The research team studied data from the World Health Survey from 2002 to 2004.

About 80 percent of adults worldwide experience back pain at some point in their lives. A previous study also found that about one in five low back pain patients suffer from depression.

“Further research is required to find out more about the links between these problems, and to ensure effective treatments can be developed. It is also important that healthcare professionals are made aware of this link to refer patients to other services if necessary,” said Stubbs.

Although the association between back pain and mental health problems was similar around the world, the incidence of back pain itself varied widely – from 13.7% in China’s population to 57% in Nepal and 53% in Bangladesh.

A large 2015 study in the United States linked back pain to a wide variety of other health issues, including obesity, nicotine dependence and alcohol abuse.

People with chronic lower back pain are more likely to use illicit drugs -- including marijuana, cocaine, heroin and methamphetamine -- according to a recent study published in the journal Spine.

Power of Pain: How to Boost Your Mental Health

Barby Ingle, Columnist

Let’s face it. Living with any chronic illness is very difficult. When it also involves pain, we are bound to experience changes in our personality, mood, and mental health.

It is hard to admit that we are depressed, snap at others, and take our physical pain out on them. My husband and I spend a lot of time helping others in pain. He has said to me that if I dealt with my pain like some other people do, we would never make it. 

When I first met my husband, I had just come out of a 10 year marriage to someone else. I knew what I wanted -- to figure out what my pain was and get a cure to fix it. I had no intention of dating, let alone getting remarried. 

I have a degree in social psychology and was able to keep in mind that no matter how horrible I felt, it was not the person I was with who was at fault. It wasn’t my fault either. Sometimes things are just because they are. I made a conscious effort to go above and beyond, be thankful, and to never snap at anyone helping me or choosing not to help me, as was the case with my ex-husband. 

I also realized that I needed some tools to cope with my new life. I needed professional help and guidance. Anyone facing the challenges of chronic pain will have “situational depression.” It is normal and common. Who would not be depressed after going from healthy to disabled?

Not only that, but chronic pain affects the limbic system in our brain, where mood is processed. I found that my anxiety and depression rose along with all the other things I was losing. It was very easy to snap at others around me or blame my situation on others. 

The tools I learned through cognitive behavior therapy helped get all of those feelings under control. I saw a few counselors as well as going to group counseling with others who were facing similar situations. I looked at it as an attitude tune-up to remind me of the life tools we need for our mental capacities to function to their best ability. 

Tools that I found most helpful were setting goals, getting organized, spending time outside, meditating, not to sweat the small stuff, and finding my purpose. The “Who am I?” question was where I started. One of the best exercises a counselor had me do was write down who I was. 

I had lost everything, my job, my husband, my house, and my driving privileges. I had trained my whole life to be a cheerleader. I was head coach of a division IA university and owner of a cheer/dance training company. It was my dream and it was all shattered. 

I had the hardest time starting the assignment. What I was since I could remember was a cheerleader. That was all I was, all I knew, all I wanted to be. I couldn’t go back into the counselor’s office with nothing on my paper. But I felt as if I was nothing. I had lost my purpose and doctors were telling me I would never get it back, even though they couldn’t give me a proper diagnosis. 

I called my psychologist and said, “I am failing again, I don’t know where to start, I am nothing anymore.”

He said, “Let’s start with your faith.” 

“I am Catholic,” I told him. “Okay, write that down,” he said. “What do you like most about yourself?” 

“My teeth” I replied. He said, “Write down, I have good teeth.”

I began to see where this was going. I began to look at all the things in my life that I am. 

I am more than this pain I am in. I am more than one thing. I realized that all my life, I had one goal and one dream, but I was so much more. When I was done, I ended up with 78 things on my list of who I am. 

I learned that I am not just a pain patient, I am well rounded and I am unique. We are all unique. Most importantly, I learned I was still a cheerleader. I was just going to have to change how I achieved and continued my purpose. Who I am and what my purpose is are two separate things that intertwine, but my purpose doesn’t define me. 

I encourage people who are having trouble after developing pain to write down their goals. Write down your purpose. Write down who you are. Use it as a reminder to yourself in your toughest moment that you still are! You are important. You count. You matter. 

You can accomplish your goals. The how, when, why, and who will help are yet to be determined, but you now have something to work for. 

Take on the smaller tasks first. Whatever boulder gets in your way is passable. Don’t think I have to go through this, but how can I get past this. Over, under, around, walk, bus, train, plane, there is a way. If it is too big in the moment, break it down even more. 

You don’t have to change your dreams and goals, but you have to find a new way to accomplish them that is not necessarily the easy path. We will all have personal failures, but it’s not over until you give up. That is just part of the path you are taking. 

Let go of the worry and stress of not accomplishing what you want in a specific time frame. Just getting parts done is an accomplishment in itself. No one is perfect, even the healthiest person on earth. Live for the positivity of life and for your own mental health.

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.