10 years in a wheelchair

Jane, a woman in her early 60s, was exactly such a patient. She’d lived with severe scoliosis all her life. Then, in 2001, she was rear-ended while driving, and the following year, she had a bad fall while grocery shopping. By the time she came to see me, she had severe pain everywhere. She’d been using an electric wheelchair for nearly a decade. She was taking over 200 mg of morphine per day and high doses of anti-anxiety drugs.

When I examined her, she was tilted forward and to the left, barely able to stand. Her spinal curve was severe enough that I recommended surgery but I warned her that the treatment had a high rate of complication.  Because of this, it was unsafe to do the operation until her medications were stabilized, her pain significantly diminished, and she was more mobile. The term we use is “prehab” or rehabilitation before surgery to optimize the outcome.

I gave her my book, Back in Control and referred her to a colleague to coordinate her care. She was not that interested and they mutually agreed to not continue care. Eight months passed and I saw her on my schedule. I was curious because I knew the size of her curve and the severity of her pain. High-dose narcotics makes it all the more difficult because they sensitize the nervous system. I did not have high expectations…

Out of the wheelchair

I was shocked when I walked into the room and there was no wheelchair, walker, or cane. She was standing up to greet me. She was off all of her medications, had no pain, and was working out in the gym three times per week. She was animated, smiling, and engaging. I ended up an hour behind in schedule, as I wanted to find out what had turned her life around.

Jane admitted that she had spent the last 10 years sitting alone in her house stewing over all the wrongs that had been done to her. She only went out when necessary. After understanding the linkage between anger and the pain pathways, she decided to forgive. She forgave her ex-husband, the person driving the car that had hit her, the people involved in her legal battle, and the medical system that had not helped her. This process took several months to work through – but within weeks of doing so, her pain began to abate.  She still had scoliosis but as her pain diminished, she stopped stooping over protectively to guard her back. She now could stand up straight and tall.

Reconnecting through forgiveness

Forgiveness researchers, such as Dr. Fred Luskin, have shown how rumination and anger influence central and autonomic nervous system function and impair functioning of the hypothalamic-pituitary adrenal cortical axis (stress system). While forgiveness is seen as a coping mechanism that helps to relieve the stress of anger, it also has direct and indirect effects on health and nervous and endocrine function.

It has been my position that anxiety-induced anger is the driver of chronic pain. The manifestations of unrelenting anger are profound and one of them is becoming socially isolated. Now you have all the time in the world to think about your pain and all the ways you have been treated badly. You body is full of adrenaline, which decreases the blood supply to the frontal lobe (thinking area) of your brain. Indeed, it is well-documented that patients’ brains shrink in the presence of chronic pain. Between the adrenaline and not using the creative part of your brain, that would make sense. Fortunately, your brain will re-expand with resolution of the pain. (2) Anxiety, anger and adrenaline

Social isolation

Besides moving too fast, our modern societal structure does not encourage us to interact with each other in a meaningful way. I read a US News & World Report article several years ago, which reported that the average number of close friends that person in the US had was 2.2. That means that many people have essentially no close friends.

I am a pretty social person but when I was in the midst of my own burnout I became isolated. It wasn’t that there weren’t people around. I had so many intensely negative thoughts about myself whirling around in my head that I couldn’t believe that anyone would want to hang out with me. The loneliness was crushing. When I arrived back in Seattle in 2003, a close friend invited me over for a barbeque and I was shocked. I have not forgotten that day and it was the beginning of my re-entering life.

People being with people

We have held three five-day Omega workshops and this year we will be putting on a weekend seminar with Dr. Bernie Siegel, author of Love, Medicine, and Miracles. My priority was to create a safe environment where people could be with other people and share experiences. One of the most effective ways to re-connect is play and as people began to relax and laugh their pain would disappear. Of course it, returned when they returned to the real world and their triggers. But most of the participants learned the skills to consistently remain out of pain. The more satisfying aspect of the process though was that as the pain abated many re-engaged with their lives in a much more powerful way. Play

As we presented our material throughout the week, I realized that we did not have to do much. It was the participants being with other people that created healing. It was remarkable. Dr. Louis Cozolino wrote an exhaustive review in his book, The Neuroscience of Human Relationships. (3) He points out that humans evolved by interacting with other humans. Therefore, the consequences of becoming isolated are consistent and often severe. Studies out of Australia have shown that there are damaging mental health effects when workers become disabled and out of the workflow of the day. Sitting around the house without a sense of purpose is not a great way to thrive. (4)

One of the first Omega participants sent me this video link. She experienced profound healing after being in pain for over 35 years and has been a true inspiration. TED talk: Our lonely society makes it hard to come home from war

This Fox segment was filmed with another one of our Omega participants. She has a great story amongst many others. We never anticipated the power of people healing people.  Video: Write your way out of pain

Jane was in a wheelchair for over 10 years and on high dose narcotics with a severe spinal deformity. It was by her working past her anger, getting out of the house and re-connecting with her friends did she heal. No medical treatment can replicate the power of the body to heal itself. Anger disconnects – play connects.

1. Eisenberger N. “The neural bases of social pain: Evidence for shared representations with physical pain.” Psychosom Med (2012); 74: 126-135.
2. Seminowicz DA, et al. “Effective treatment of chronic low back pain in humans reverses abnormal brain anatomy and function.” The Journal of Neurosci­ence (2011); 31: 7540-7550.
3. Cozolino, Louis. The Neuroscience of Human Relationships. Norton and Co. New York, NY, 2014.
4. Waddell, G and Kim Burton. Is Work Good for Your Health and Well-Being? TSO. London, England, 2006.

Listen to the Back in Control Radio podcast Social Isolation and Chronic Pain

The taste of freedom – Omega 2017

Social Isolation and Chronic Pain

The post The Pain of Social Isolation first appeared on Back in Control.

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• Understanding the nature of chronic disease and the principles behind the solutions, allows you to fully engage in your care.
• Characteristics that keep us alive are what also create disease states.
• Chronic pain is a neurological diagnosis that has profound effects on your body’s physiological state. Existing in flight or fight breaks down your body.
• Survival depends on the protection of anxiety and anger. Letting go of trying to fight or change them releases energy to live your life.
• The essence of chronic illness is living in sustained threat and the solution lies in finding safety.

Here is a review of some characteristics of staying alive, which are the same ones that cause illness and disease.

Your health is dependent on the amount of time your body is in a physiological state of threat compared to feeling safe. Life is dependent on feeling safe in order to regenerate and also dealing with threats in order to survive. But, when you are exposed to sustained threat physiology, your body will break down.¹

Physical and mental symptoms are the result of each organ system in your body uniquely responding to your body’s chemical makeup.² In addition to the multiple physical symptoms, the sensations created by the flight or fight inflammatory state are called anxiety and anger. They are the result of threats, not the cause. They are also powerful, uncontrolable, amoral, destructive, and necessary to maintain life.

The starting point

Picture a complex circuit board that has trillions of etched-in circuits that represent your lifetime of programming. These circuits are not alterable for several reasons. First, they are memorized, similar to riding a bicycle.³ Second, any time you spend trying to analyze and figure them out is counterproductive. The more attention you pay to these patterns of activity, the more they are reinforced. Finally, as the powerful unconscious brain is estimated to process 20 million bits of information per second⁴ (compared to your conscious brain only processing 40 bits per second), rational interventions alone, such as talk therapy, cannot hope to make a dent in these circuits. It is like trying to move a high mountain peak with a shovel. It is not going to happen and much of your life’s energy is consumed in the process of trying.

It sounds discouraging. You have these permanently embedded pain circuits in your brain and the harder to try to fix them, the more they are reinforced. They are also necessary and much more powerful than your conscious brain. So, what do you do?

Solving the unsolvable

Understanding that you cannot solve or improve these unpleasant circuits is the first and necessary principle behind the solution. You must put down your shovel and move on. Instead of trying to “fix yourself,” new strategies are needed to create fresh circuits in your brain. Most of these approaches utilize methods that connect with the unconscious part of your brain with repetition. It’s similar to diverting a river into a different channel. You begin with small steps to create these new channels, but eventually the water’s flow will aid the process.

So why would we ever take anxiety or anger personally? They are inherent for survival but have little, if anything, to do with who we are. By letting go of trying to solve an unchangeable situation, you’ll experience a huge energy surge that allows you to move forward.

The second principle is that since it is impossible to fix your pain circuits, you must develop or shift onto a new set of circuits that aren’t painful. There are many ways of stimulating these changes, and the process is called, “neuroplasticity.” It is similar to installing a new virtual computer on your desktop. With repetition, it is remarkable how quickly these changes happen. Since your brain will develop wherever you place your attention, you must move towards your vision instead of continually trying to fix yourself. As you embrace wellness, you’ll crowd out pain.

Third, you cannot move forward until you have let go of the past. This is difficult because when you are trapped by a chronic disease, you are legitimately angry. However, you are also stuck. There are ways to effectively process anger and there are tremendous benefits to learning these tools.

Fourth, The DOC Journey is simply a framework that organizes your thinking and presents tools in a way that you can apply them in a focused manner. The steps in healing are:

• Awareness – you have to understand a problem before you can solve it.
• Treating all aspects of pain simultaneously – it is similar to fighting a forest fire. Every treatment can contribute to a good outcome, but nothing will work in isolation.
• You take control of your care. Since chronic pain is complex and you are a unique individual, each person’s situation is incredibly complicated. You are the only person that can possibly solve it with guidance. If you are not in charge, nothing can happen.

Fifth, a core concept of The Journey is awareness. It includes awareness of:

• Your emotions
  • Suppressed emotions are especially problematic
• The impact of your actions on others and theirs on you
• The nature of chronic pain
• The principles behind the solutions to chronic disease
• Your specific diagnosis
• Your vision of what you want your life to look like

Finally, since your sense of well-being and health is dependent on the composition of your body’s physiological state, all of your efforts are intended to stimulate it directly or indirectly into a safety state. There are three areas of focus:

• Input – how you process your stresses
• The state of your nervous system – calm or hypervigilant
• Output – it is desirable to remain in balance or safety and minimize the amount of time you are in a threat state.

The desired safety state allows you to feel content and secure, have a slower metabolic rate (rate you burn fuel), less inflammation, and lower levels of stress hormones. Optimizing your body’s physiological state from threat to safety has a profound effect on your health and quality of life.

Recap

The solutions to solving and preventing chronic disease lie in understanding the principles behind them. Embedding these of concepts allows you to continually practice them. This is in contrast to randomly learning techniques to fix yourself. The process gives you control of regulating your body’s physiology from one of threat state to safety.

Questions and considerations

1. Consider that it is your whole body that responds to your immediate set of circumstances in order to optimize your chances of survival. Your nervous system is the processing center for sensory input and an integral part of the reaction. There is absolutely no separation of the mind and body and why even the use of the term, “Mind Body” is inaccurate.
2. Why would you take your powerful survival reaction personally? It is intended to feel so unpleasant so as to force you to act. It is what you possess and not who you are.
3. You’ll be taken on a journey that will allow you to depersonalize this flight or flight reaction. It is just a part of your daily life.
4. Take some time to review the above principles of solving chronic disease. They will eventually enter every aspect of your life and become automatic. As you spend a lesser amount of time in a threat state, you will be able to move forward into a new life and thrive.
5. You can’t fix chronic disease. You must let go and move into wellness.

References:

1. Torrance N, et al. Severe chronic pain is associated with increased 10-year mortality: a cohort record linkage study. Eur J Pain (2010);14:380-386.
2. Schubiner H and M Betzold. Unlearn Your Pain, 3^rdMind Body Publishing, Pleasant Ridge, MI, 2016.
3. Hashmi, JA et al. Shape shifting pain: Chronification of back pain shifts brain representation from nociceptive to emotional circuits. Brain (2013); 136: 2751 – 2768.

4. Trincker, Dietrich. 1965 lecture at the University of Kiel. German physiologist

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ACE’s

It is clear from data produced from the ACE (Adverse Childhood Experiences) study that we, as a culture are not parenting very well. The list of ACE’s is the following:

Household dysfunction

• Substance abuse
• Parental separation/ divorce
• Criminal behavior
• Mental illness
• Battered mother

Abuse

• Psychological
• Sexual
• Physical

Neglect

• Emotional
• Physical

The higher the ACE score, the greater the chances of the children experiencing depression addiction, extreme obesity, anxiety, suicide, partner violence, etc. The list is long. (1)

What is striking is that only 30% of children had an ACE score of zero. Over 35% had an ACE score of 3 or higher. It is ironic and unfortunate that the people you care for the most are also the ignition for strong unpleasant reactions. Why is this the case?

Our programming

We are programmed from birth by our environment. It matters little what you “teach” your child. It is how you behave. So each of us have patterns of behavior that are imbedded in our nervous systems that are a result of witnessing the actions of our parents. Whether you adopt or reject the patterns, the patterns are still running your life. The behaviors play out the most strongly in our new families regardless of the makeup. They originate in the unconscious part of your brain and are not solvable – especially when you are not aware of their magnitude or existence. Hoffman process

So as you begin to engage in the DOC principles with some success, it is difficult to move forward when you are continually being triggered at home. We do know that pain and anger are linked pathways. Additionally, these reactions are so powerful, none of us want to give them up, even though we know better. The family unit may be the most critical aspect of keeping you stuck in the Abyss of pain. The crab bucket  It may also be the most influential in pulling you out of it. A promising sequence involving the whole family is beginning to emerge. Here is how I finish a typical office visit after I have done my evaluation and explained the relevant issues.

Beginning the family healing

I hand them a copy of my book and show them this website, www.backincontrol.com. I ask all members of the household to go “all in”, whether or not they have pain. Everyone has anxiety, which is the pain. After I have suggested that they begin the expressive writing combined with active meditation, I jump to the final step of Stage 1 – Do not share your pain.

Here are the guidelines:

• When you walk out the door of this office you are never to discuss your pain with anyone – especially your family. BTW, no complaining about anything – period.
• On the way home you are to spend the time reminiscing about era of your relationship when you had the most fun. Remember your dreams, friends, adventures, conversations and shared suffering in detail.
• When you walk through the door of your house that same energy will be brought into the home and nurtured – without exception and indefinitely. If you must argue – take it outside. My nurse pointed out to me that you cannot have a bar fight in a bar. Why do you want your home to be a no-holds-barred fighting arena?
• They must make a commitment to honor this part on not engaging with each other when they are upset and I ask them both to verbally affirm it.
• I show them the link to “Protect Your Family from Your Pain.” Each of them has permission to withdraw from any unpleasant interaction – without reprisal. Each party also has permission to ask the other to person stop discussing his or her pain.

It has been eye-opening for me to see how much time people spend talking about their pain or what is wrong with their lives. It is not that interesting. It is incredibly frustrating for family and friends to constantly hear about it. There is nothing they can do to help. It is also interesting how responsible family members feel to help the other person solve the pain and also how the person in pain can hold the family’s feet to the fire to help. It is a deadly cycle. Your pain is yours and yours alone. It’s your responsibility to own and solve it.

I’ve had patients blurt out, “Well what can I talk about?” Almost anything is more interesting than pain. The alternatives are infinite. You have to first unhook from your pain before you can re-experience these wonders.

Not sharing the pain

I have been heading towards this conversation for a while and have taken it up several notches over this last year. It has been encouraging and change can occur quickly. I had a woman who had been in pain for over 30 years, in addition to some other significant neurological problems. She had a strong right to complain and be upset. The problem was that her husband was simply worn out. The tension in the room was high and uncomfortable. When I introduced the rule of not talking about pain, he immediately had a smile emerge and both of them relaxed a bit. I said, “I want you both to fully engage but separately. Imagine a 10-foot steel-reinforced concrete wall between the two of you regarding the topic of pain.” I then went on to explain the above-mentioned rules.

I was shocked when they returned a month later. They were animated and laughing. Her pain was down by about 60% and both of their moods were dramatically improved. They had re-discovered how to have a good time. Remember that although pain pathways are permanent, so are play pathways. You just have to re-connect with them. It is a powerful way to move forward. Interestingly, some of her neurological symptoms had improved. They could hardly contain their excitement about the possibilities. The only negative of the day was that I was so interested in what had transpired that I got hopelessly behind in clinic.

Safe

It has also struck me that one of the core concepts of healing is feeling safe, which is hard to do in this world amongst fellow workers, classmates, bosses, and most importantly from yourself. We endure an endless barrage of negative self-talk. However, you do have a choice about what you want to create at home. I think that by constructing a “safe house” that you are more able to do the same in other areas of life.

I have decided that the focus of my next book will be on both protecting the family from chronic pain and using that same energy to connect to the body’s capacity to heal. I am looking forward to seeing where this might go.

Happy Mother’s Day!!

Listen to the Back in Control Radio podcast Parenting – Creating Your Own Triggers

1. Anda RF, Felitti VJ, Bremner JD, Walker JD, Whitfield C, Perry BD, et al. The enduring effects of abuse and related adverse experiences in childhood. A convergence of evidence from neurobiology and epidemiology. Eur Arch Psychiatry Clin Neurosci 2006;256:174–86.

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There were three ground rules: 1) you could not complain about your pain or let the other participants know where you were hurting 2) medical care could not be discussed 3) no complaining – period. Most participants were initially thrown off by not being able to discuss their pain but quickly realized how important it was in contributing to his or her healing. What I had not realized prior to conducting these workshops is how much people do complain – not only about their pain, but also about life in general. How can you enjoy your life when you are continually upset?

Directing your attention

Your nervous system will rewire in whatever direction you place your attention. How much time do you spend thinking (obsessing) about your pain? How aware are you of others needs? What percent of your conversations are spent discussing some aspect of your suffering? Do you really enjoy discussing your pain? Don’t you become tired of it?

Georgia

One of the most dramatic turnarounds I have witnessed was a patient who came to me to have her scoliosis fixed. Her curve was about 60 degrees and she was suffering from chronic back pain. There is little evidence linking scoliosis to chronic pain. Since her spine was still balanced I was not inclined to consider a surgical procedure. It would have involved at least 8 hours of surgery with a complication rate of over 50%. She had been wheelchair-bound for about 10 years and was taking a lot of narcotics. I told her that I would consider surgery only if she engaged in the rehab process as outlined in my book, Back in Control. One of my pain specialist colleagues was remarkably effective in helping my patients through the process. However, within a couple of months we both had to let go in that she was not taking any responsibility for her condition and not willing to put forth any significant effort.

About a year later she re-appeared on my schedule. I have to confess that I was dreading walking into the room since I had already given her so many admonitions to engage. I opened the door and she was standing there with no wheelchair in sight, without any brace support, was off all of her narcotics, and did not have any pain. She was working out in the gym and getting back to re-engaging with her friends. I was stunned.

Of course, I was a little more than curious about what had happened. She confessed that she had been sitting in her house every day obsessing about everything that had gone wrong in her life. Essentially, all of her conversations were focused on her problems that were created by her pain. She had been in a couple of car accidents and had gone through a bitter divorce. She resonated with the forgiveness section of the DOC project, and quit talking about her miseries. She decided to let go and move on. Within six weeks the pain began to abate and by 4 months it was gone. I still see her around the hospital, as she did have another fall; but she is still living the life she has always wanted to live. She radiates energy and joy.

Stop it

Stop discussing your pain, medical care, or even any of your troubles with the world – NOW. There are no shortcuts. You are not going to move forward while hanging on to your grievances. Every day is an opportunity to begin anew. Behavioral patterns are so deep that changing your conversation to enjoyable topics may be difficult. Just do it. It will initially be challenging but you will be surprised at the effectiveness of this simple strategy. Can’t do it? Really? How badly do you want to heal?

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You cannot discuss your pain

I didn’t realize how much people routinely discussed their pain with anyone who would listen. I first became aware of this pattern during a five-day workshop I conducted in New York at the Omega Institute with Dr. Fred Luskin, author of Forgive for Good; my wife, Babs Yohai, a professional tap dancer; and my daughter Jasmine Yohai-Rifkin, who is an expressive arts therapist as well as a dancer. My intent of the structured workshop was to re-introduce the participants to people, since those in chronic pain tend to socially isolate themselves. One of the ground rules during the workshop was that the participants could not discuss their pain or medical care. I was surprised how much this caught people off guard, and how much they tried to discuss it anyway.

Not surprisingly, there are papers that show how just belonging to a fibromyalgia support group where people routinely complain about pain predicts a poor prognosis for healing or even improvement. (1) Keeping a detailed diary of your pain also is detrimental to your improvement. (2)

Sharing pain

A friend of mine is helping me with social media to publicize the concepts in my book, Back in Control. While reviewing other websites dedicated to chronic pain, he was appalled to find chat rooms that consisted mainly of people complaining about their pain, their doctors and other health providers, the cause of their pain, and the pain itself. What was most striking was that there was essentially no conversation around possible solutions.

Pain is addictive. Most people do not want to give it up, and that includes me. The biggest obstacle to healing is the sufferer’s willingness to learn about chronic pain and proceed with a plan to overcome it. There are too many benefits to being in pain, the main one being that it feels so powerful. It lets you expect less of yourself, and causes others to demand less from you. On many levels, it is a strong manipulative force within the family unit.

My broken ribs

About a month ago I was skiing in Utah. It was the first time I had been able to ski in almost two years. I have arthritis in both knees and had been working hard to regain full function of them without undergoing surgery for knee replacements. I had to apply every strategy I have been teaching my patients, but I finally I broke through. I was with my son and daughter and thrilled to be outside on the slopes again. I was even able to navigate some moguls. It was a landmark day – until it wasn’t.

Wearing my ski boots, I walked off the hill into a restaurant. About 10 feet from my wife, who was meeting us for after-ski drinks, my left ski boot skidded on the slippery floor and took my right boot out from under me. I hit the floor hard, landing on my left rib cage. I could feel multiple ribs break. As I could not talk or move for almost five minutes, everyone thought I had experienced a heart attack. Finally I was able to get off of the floor and have a light meal with my family. I refused the ski patrol’s urging to get checked out, and I was even planning on going out for dinner later that evening. My wife asked if I was going to order spare ribs.

My pain at impact was as severe as I have ever experienced, but it was nothing compared to the next five days. Every time I went from lying down to sitting up, or vice versa, my left chest went into muscle spasm and I could not move. Each spasm was sustained and worse than the fall. I could not turn over in bed. I became claustrophobic. After calling Seattle to have a chest surgeon immediately put plates on my ribs, it took three colleagues and my wife saying, “Are you out of your mind?” to think better of that idea. Interestingly, the day I was to have had the surgery, my pain dramatically improved.

I could talk about this for a while

I could easily write another three pages about how terrible my pain was. But my point is that I wanted to talk about it to anyone who would listen. The intense experience was naturally the most prominent thing on my mind. People were sympathetic, and many told stories about their own injuries and suffering. It was my sole topic of conversation for a week. Then it hit me how much “benefit” I was receiving from discussing my pain. It was all about me, and people really did sympathize. Now, none of this was bad – except that I was getting stuck; and frankly it was becoming a little tedious re-telling the same story. So I was even resorting to embellishing it.

I became aware of several things during this ordeal:

• I enjoyed talking about my pain.
• I was “impressive” to return to work so fast after the accident.
• I more fully understood why patients become so frustrated when I cannot offer them a surgical solution for their pain.
• When I knew a certain move was going to cause extreme pain and I had no choice, my mind began to do funny things. (This will be the topic of anther post.)
• Although I knew my ribs would heal, I kept wondering what it would be like if I had to live with any degree of this level of pain and feeling there was no end in sight.

Life is full of humbling experiences, and this was one of them. It is never a bad thing for a physician to experience at least some of their patients’ suffering. A support system is wonderful, as is being able to share your suffering with those close to you – for a while.

Just keep reminding yourself that constantly discussing your pain will lock your nervous system into those pain circuits. You will also eventually drive people away, encouraging the social isolation common in chronic pain patients. Your pain is just not that interesting to others. They have their own suffering to deal with.

It is critical to move on – with or without your pain.

1. Gill KM, et al. Social support and pain behavior. Pain (1987); 29: 209-217.
2. Ferrar, Robert. Effect of a pain diary use on recovery from acute low back pain. Rheumatol Int (2014); DOI 10.1007/s00296-014-3082-3

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