I Recovered and So Can You!
Written by Rita Labarbera for the RSDSA blog.
“Each patient carries his own doctor inside him.” Norman Cousins “Anatomy of An Illness”
It’s an honor and a privilege to write this article for RSDSA, the intent of which is not to offer false hope or ways to manage this wretched condition, but to inform the world that you can fully recover from RSD/CRPS. It doesn’t matter who you are, how old you are, how your condition started, the severity of your RSD, how many years you have suffered, you or your loved one can get better! My deepest hope is that by sharing my personal story and journey, I can help others to recover as well… FULLY. I was diagnosed with RSD/CRPS and suffered for many years with all its permutations, presentations, infernal symptoms, accompanying depression, despair and hopelessness. I am also a cynical, negative and resistant person by nature. I’m living proof that if I could get better, ANYONE can!
I anticipate skepticism, maybe even anger from some who may read this, and that’s understandable. My deepest hope and dearest wish is that each person who reads my story will keep an open mind and simply read one of the books I recommend as a start. What does one have to lose by reading a book? A few dollars? An hour or two of time? What is that, in comparison to getting your life back?? This article is probably the most meaningful thing I will ever write in my life and I sincerely hope dear reader, that you will continue reading.
I’m a 50 year old mom living in NJ and have 2 sons (14 and 12). My younger son is severely autistic and the demands and challenges of his disability have been great. For many years the stress of care taking took their toll on my emotional as well as my physical health. What I didn’t realize was that the body is an extension of our daily thoughts and emotions. The mind and body are one…inseparable. In order to function and cope, I had to repress a great deal of emotions. One could say that I was in survival mode, and fight or flight for many years. One could also say I’ve been through the mill. My descent into the all-expense paid, trip through the medical mill began with what appeared to be a painful swollen big toe. My son with autism had often stomped on my feet while tantruming, so initially I dismissed it as nothing. A few weeks later my pain had skyrocketed and I made a visit to “Dr. Cheerful” the podiatrist. “Could it be gout?”, “Is it broken?” I mused. After receiving a cortisone shot, I was sent on my merry way. Or so I thought. The pain intensified and spread through my foot like Super Storm Sandy. After informing her about my worsening symptoms, I received a cryptic message from the secretary to “please do not return for your follow up appointment.”
The more I sought clarity in the medical mill, the more confused I grew. An orthopedist, Dr. “How Can I Get Rid Of You As Fast As Possible?”, bestowed upon me a cumbersome medical boot and a script for pain killers. Somehow, the idea of encasing my “engulfed in flames” foot seemed counter intuitive. Not to mention, how was I supposed to drive home? In an alarmingly short time span, the hellish pain had spread to both feet. At rheumatologist #1, Dr. “It’s Nothing!”’ prescribed Epsom salts and time. This was despite the fact that my MRI showed bone marrow edema in each toe. Hobbling in slippers with my son in tow, I went to rheumatologist #2, “Dr. Distracted”. The bizarre sensations in my feet were akin to having my soles blowtorched and my toes stabbed and crushed by a cement truck. My blood work came back negative for RA and I was referred to a neurosurgeon, “Dr. Pompous” who spoke in rapid fire about “radiculopathy”. The second neurologist Dr. “I’ll Keep You Waiting for 3 Hours (yes 3) and Hand You a Brochure That Has the Word Incurable All Over It”, gave me referrals and bid me adieu.
“Dr. Detective”, rheumatologist #3, initially displayed great enthusiasm in uncovering my mysterious condition, but like a woman dating George Clooney I was abruptly dumped as a patient. After visits to 2 more rheumatologists, a misdiagnosis of RA and a nuclear bone scan, I fell down the rabbit hole of Lyme disease. Dr. “Lyme Lady” prescribed anti malaria drugs resembling yellow paint to “eradicate the parasites”. After this bout of nonsense, I entered the word of pain management. A world of waiting rooms and pale, shaking patients waiting for refills. My RSD diagnosis was official and more incredibly costly and unpleasant rabbit holes…ketamine infusions, nerve blocks, Calmare therapy, bisphosphonate infusions, drugs with awful side effects. I was no longer living…just existing. The RSD then spread to both knees and at one point it went full body. I was bedridden and 93 lbs. My family had to enlist help for the house and kids. It was a catastrophic situation and I was at the lowest point of my life.
Then I remembered Dr. Sarno. Dr. John Sarno, the “Back Dr.”, I had heard in a radio interview. I ordered a copy of “Healing Back Pain” from Amazon for $3.99. The day I pulled the book out of my mailbox was the day my life changed. Do not be thrown off by the word “back”. Dr. Sarno refers to a myriad of chronic pain syndromes that cannot be adequately explained or cured by the medical community. I saw myself in every page of this little paperback. Dr. Sarno explained that the brain, in an effort to protect us from threatening or powerful emotions (especially rage and guilt) will create physical pain sensations as a distraction. And a powerful distraction it is!! Those pain signals become super highways in the brain. The good news is that we can override these signals by creating new pathways. By the time I finished devouring the book (in half an hour), I knew that I was going to get better and it was up to me to do so. No doctor, no miracle, no pill, no treatment, was going to save me. This was an inside job. Daunting yes, but also empowering. The key to recovery of any chronic pain syndrome such as RSD is understanding the mind body connection. You could call this knowledge therapy. Once you have read and amassed the knowledge, it becomes a matter of putting it into practice….changing chronic thought patterns. One must shift their focus from the physical to the psychological. This requires no money, but merely patience and persistence.
Stay with me here. We are conditioned in our society to look towards the medical community to fix what ails us. What is woefully neglected however, is the role of the MIND. All chronic pain stems from the brain but the brain is neuroplastic. More and more research is emerging about the science of the brain and its role in our overall wellbeing and healing. There is no “miracle” when you hear about people who have spontaneous remissions of diseases. The miracle lies in their own change of mindset. There is nothing mystical about it. It comes down to understanding the mind body connection and choosing your thoughts. After suffering in the depths of hell for over 6 years, I can say I am fully recovered. I can wear sneakers, sky high heels, I can walk as far as I want, and exercise… live a totally normal life. And you can too.
In closing, Glinda the Good Witch from “The Wizard of Oz” summed up my message best: “You’ve always had the power my dear. You just had to learn it for yourself.” Anyone who is interested in contacting me, please do! I’m more than happy to offer encouragement and assistance in any way I can. My email is RitaLaBarbera@Yahoo.com. I recommend the following books as a starting point, as well as the www.tmswiki.org, a veritable treasure trove of resources and community. I’m MiffyBunny there.
“Healing Back Pain: The Mind-Body Connection” by Dr. John Sarno MD
“Unlearn Your Pain” by Dr. Howard Schubiner MD
“The Hidden Psychology of Pain” by Dr. James Alexander Ph.D
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Thank you so much! It helps to hear other’s stories. I have had similar doctor experiences where they just give me an incurable diagnosis (arthritis) and send me on my way. So unhelpful!!
Great article Rita. Understanding the mind body connection & how it links to so many chronic pain syndromes is so very important & a key element in recovery.
I too think that the http://www.tmswiki.org site is invaluable.