“With trips in and out of the hospital and no answers as to why my health had suddenly deteriorated, I more often than not remained in bed, wondering what could possibly be going on with me.”
Recovery talks with Nicole Sachs.
Listen here to my discussion with the wonderful Nicole Sachs on The Cure for Chronic Pain podcast, where I discuss my symptoms and recovery in addition to taking a deep dive into what it means to reconcile new neuro-scientific concepts with the current Western Medical Model.
“I was diagnosed with Ehlers Danlos Syndrome, PoTS, Fibromyalgia, Chronic Fatigue, Nausea, TMJ, Neuropathy, Rosacea, and Interstitial Cystitis.
The list just felt
endless.”
“According to every specialist…I would just have to learn to live with the pain".”
At the age of 16 I was diagnosed with Ehlers Danlos Syndrome Type III and Postural Orthostatic Tachychardia Syndrome (PoTS). Whilst initially able to continue with my life, my symptoms progressed, resulting in flares of extreme dizziness, heart palpitations, difficulty swallowing and low blood pressure. With trips in and out of the hospital and no answers as to why my health had suddenly deteriorated, I more often than not remained in bed, wondering what could possibly be going on with me.
As the years went on, my health failed to improve. Diagnoses of fibromyalgia and chronic fatigue were added to the list due to the development of chronic joint, chest and lower back pain in addition to an inability to muster the energy to walk even small distances. Blood tests, MRIs, CT scans revealed no abnormalities. According to every specialist I visited, I was perfectly healthy; my conditions were all just caused by my ‘harmless’ Ehlers Danlos and I would just have to learn to live with the pain. I was also told to consider the difficulties I was putting my family through by continuously searching for answers.
“I grew accustomed to trying to pretend as though I was normal. In fact, after years and no answers, I also began to question whether these symptoms were in my head.”
Nearly a decade after my first symptoms, the most difficult chapter of my life to date was about to begin. My pelvic symptoms started insidiously. A lingering pressure and urgency remained in my bladder after urination. Not concerned and thinking I may have developed a UTI, I took D-Mannose and drank cranberry juice. After no symptom resolution, I decided to organise a trip to the GP which, unsatisfactorily, was concluded with both a negative dipstick and culture. With no answers as to what was going on, my concern began to grow. Cultures were repeated and continued to reveal nothing. Eventually, during a trip to the urologist, a diagnosis of interstitial cystitis was made accompanied with an explanation that IC was incurable condition that I would suffer from for the rest of my life. Unable to accept this fate, I read scientific paper after paper, desperately searching for the cause of this condition. Having heard about a theory of a constant embedded infection, I began antibiotics. My symptoms, however, continued to rapidly escalate, resulting in excruciating and unrelenting pain which prevented me from sleeping and engaging with life. Unable to look after myself properly, I couldn’t work and relied on family to support me.
After a decade of trying osteopathy, chiropractic treatment, hypnotherapy, naturopathy, prescribed and herbal medications, diets, special mattresses, TENS machines, infra-red- and red-light therapy and a number of other gadgets that promised a pain free life, I discovered the work of Howard Schubiner and Dr John Sarno and the study of neural circuit disorders. For the first time, I was told that neuroscience has progressed and there was an explanation for what was going on with me. The pain I was feeling was real and even though I’d been suffering for years, it could be cured. Encouraged, and failing to have any other options left, I began to do the work.
The road to recovery is never linear, but over time my improvements became undeniable. Now, having fully recovered and re-trained under Prof Schubiner and Hal Greenham, I help others achieve their dreams of a pain free life. My decade long journey for answers finally ended. I look forward to helping you achieve the same.