“Our beliefs control our bodies, our minds, and thus our lives…”― Bruce H. Lipton, The Biology of Belief: Unleashing the Power of Consciousness, Matter, and Miracles
In 1997, I was suffering from crippling, all-over body pain, feeling sick and fatigued most days. My arm muscles ached so deeply, I could barely lift the bed covers or climb from the bed in the morning.
My primary physician scheduled many tests to rule out other diseases. Eventually, I was referred to a rheumatologist in Grand Rapids, MI who diagnosed fibromyalgia. It was a disorder characterized by chronic musculoskeletal pain, fatigue, tenderness, and stiffness in specified areas. Ironically, the medical profession could not agree that the syndrome existed.
Recently, the Center for Disease Control and Prevention gave this condition a new name – myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Now, it is considered a serious, long-term illness that affects many-body systems. According to the CDC, it is caused by a change in the person’s immune system and occurs through connections among the hypothalamus, pituitary, and adrenal glands.
Cortisol, also called “the stress hormone,” helps to lower inflammation and calm down the immune system. Low levels of cortisol in ME/CFS may lead to an increase in inflammation and chronic activation of the immune system. (This might explain my ongoing red, swollen feet, and legs since two back fusions in 2014). Other symptoms can include problems with thinking and concentrating, pain, and dizziness. To read the full CDC report, Click Here
To make things even more confusing, Complex Regional Pain Syndrome expert, Dr. Philip Getson, DO insists that fibromyalgia is really CRPS.
His definition of the disorder is “a chronic progressive disease characterized by severe pain, swelling, and changes in the skin.” His website is filled with vital information about this affliction: CRPS Website and this YouTube video gives a detailed account of the syndrome. Click here to watch.
Dr. Getson has treated thousands of patients with this illness since the mid-1990s. He has attended lectures across the country and continues to work with other experts in this field to search for new ways to help patients. Two of his family members suffer from it.
It certainly pinpointed the pain I’ve been fighting and trying to explain. My mind body physician, Dr. Howard Schubiner said CRPS may very well fit as a diagnosis for me. “It’s a matter of semantics,” explains Schubiner. “I call it mind body, Getson calls it CRPS.”
Dr. Getson suggests that you see a neurologist who specializes in CRPS to get an accurate diagnosis. Otherwise, you may be misdiagnosed with the wrong pain, which could cause even more harm.
I found last week that even getting my primary physician to acknowledge the disorder can be a hurdle. You need a referral to see a neurologist, but mine disputed the diagnosis, insisting I didn’t have it, that it only affected one limb (not true), and then proceeded to set up an appointment with a vein specialist. I do have varicose veins, but I find it hard to believe that varicose veins could cause the intensity of pain and dystonia-like symptoms I’ve been suffering for weeks. Unfortunately, this is often the upward battle, folks. And it tends to make our brains & journey feel very unsafe.
An accurate diagnosis in the mind-body field is crucial.
I will never forget the extensive fibromyalgia appointment in 1997. I was there for almost 3 hours as he reviewed all my medical and family history while completing a thorough physical examination. I remember howling in pain when he pushed on a spot at the top of my shoulder, one of 11-18 tender points that are more sensitive to touch for fibromyalgia patients.
On the emotional side, I felt forced to quit my job due to an emotionally abusive boss in August 1995. I had no idea my current physical condition, triggering muscle pain and general malaise had anything to do with my anger from two years prior until I talked with the rheumatologist in 1997.
I believed in him. Someone was taking my pain and symptoms seriously. I finally had hope that I would receive help for the hellish pain and fatigue.
At that time, the antidepressant Prozac was one of the first lines of defense used to control both the pain and sleep disturbance of fibromyalgia. The rheumatologist told me it would probably take the antidepressant 4-6 weeks before I would notice a reduction in muscular pain.
Interestingly, within 10 days after starting the drug, I noticed dramatic results. As my knee pain abated, I ditched my cane.
Another line of defense was to keep the muscles warm. I made an exciting and drastic decision to move to Phoenix, Arizona where I lived a happy, active life, walking one mile every morning in the sun that shines 300 days a year in that state. “You must keep moving,” the rheumatologist suggested, offering a third important management strategy. As I felt better, I eventually stopped taking an antidepressant altogether.
Interestingly, recent research from the University of Sydney in January 2021 has concluded that antidepressants offer little to no help for people suffering chronic back pain and osteoarthritis. Read here.
Say what? Seriously?
The lead author Dr. Giovanni Ferreira, a postdoctoral research fellow at the Institute for Musculoskeletal Health at the University of Sydney reviewed all randomized clinical trials, evaluated the efficacy of antidepressants for people with back pain or knee osteoarthritis and found that these medications were either ineffective or provided such a small effect, it was unlikely that patients received any relief from them.
Why, then, did Prozac help my back, knee and muscular pain within 10 days in 1997 and seemingly help more the longer I took it? Why?
The Power Of The Mind
Dan Ratner, a psychologist and former Tension Myoneural Syndrome sufferer, who has specialized in the treatment of TMS patients for the last decade, created a YouTube video regarding the idea that thoughts held in mind produce after their kind. (Placebo Effect as Proof of Mind-Body, Crushing Doubt, Published on May 25, 2021.) Watch here.
He explains that the mind can change what occurs in the body. “Even when the believer is completely wrong, it still comes true simply because the person believes it,” says Ratner.
Ratner’s explanation reminds me of the Disney story about the flying circus elephant, Dumbo, who believed he could fly if he held a ‘magic feather.’ When Dumbo dropped the feather in mid-air, he began to fall to the ground. His mouse friend, Timothy, quickly reminded Dumbo that there was nothing special about the feather and that he could fly on his own due to his huge ears. Once Dumbo believed it, he soared through the air without the feather.
The same might be said about my experience, regarding Prozac. I believed what the rheumatologist was telling me. I believed Prozac would cure my pain. I wanted the pain gone, and I made it happen within 10 days. I was not waiting 4-6 weeks to feel better.
Now in 2021, I learn that Prozac and other antidepressants aren’t helpful for the back and knee pain I was suffering. But in 1997 I believed the medication could help and that’s what happened.
Explains Ratner, “Even if we have faulty beliefs, they become reality if we believe them strongly enough.” He continues, “What happens in our bodies is not necessarily what is happening in the body. It is based on what you believe is happening. When the mind controls the body, physiology follows suit. When the mind believes it, the body makes it so”
We all have the opportunity to change from moment to moment. All of which shows how powerful our mind is if we choose to believe.
Most mind-body physicians insist that you must believe that you have no structural problem before the pain will disappear or subside. Otherwise, the brain lives in fear, both protecting you and preventing you from moving forward.
If a structural problem has been misdiagnosed, undiagnosed, or needs further medical attention, unequivocally, do that first.
If there is no structural problem, but you still cannot discard your pain, you might want to ask: What thought(s) are keeping me from feeling powerful enough to be rid of this pain? How might I fly without a magic feather? What would it take to feel that powerful? Am I delaying a pain-free life?
It might come down to feelings of worthiness. It’s amazing how powerful you might become if you believe you deserve to have what you want.
If you do not believe that you have that much power, then you might be convinced on a subconscious level that you deserve to be unhappy? The latter might require some sessions with a TMS or mind-body therapist to be reassured of your merit.
Here are some wonderful suggestions that Philip Getson DO offers his CRPS pain patients:
- Tell yourself: I am a human being. My life has value.
- Get angry, mad as hell. Tell your pain, “I won’t take this anymore.”
- Refuse to own this disease. Give it away. Give it to someone you do not like. Do not keep it.
- Be smart. Pace yourself. Don’t try to run a marathon before you can saunter 2 blocks.
- Take as little medicine as possible.
- Eat healthily.
- Explore and consider Ketamine infusions. They jumpstart the brain, helping many.
- Get outside. Vitamin D from the sun is a powerful antidote to pain.
- Surround yourself with others who want to be better.
- Join the Facebook group Positivity rsd-crps.org where they discuss how to support each other rather than brood about the disorder.
- Find a doctor who will listen.
- Educate yourself and others.
- Have a dream (or a Bucket List) and work toward it.
Remember, thoughts held in mind produce after their kind.